Roller coasters are fast. Obvious, right? But when people want to give a visual of things having dramatic changes they use the up & down image of the roller coaster. MS has it's ups & downs, but they don't always happen so quickly. Some are gradual and yes, the changes can be as fast as feeling full of energy and promise to take on your day in the morning to hitting a fatigue wall by afternoon. That can seem fast to some, but in the instantaneous, "I have to have it now!" world we live in, changes from morning to afternoon can seem mundane.
The changes are there. I'm learning that if I really want to accomplish anything it must be done first thing in the morning. My head is usually clearer then and my energy is higher and weakness is less since I'm rested & feel stronger. As the day goes on, the thoughts that were so fresh in my mind get lost. The "go get 'em" attitude becomes the "maybe later" pessimist. The words I knew were perfect in the morning seem lacking in the afternoon. It's frustrating.
My biggest problem are my plans. You know the best laid plans... well here is my other issue. My family. You got it. My fondest most hopeful desire my whole life was to be married to an amazing husband and have children & to be the mom I knew I was meant to be in this life. Guess what? It came true! It did and then some. I couldn't be happier with my family. I love them, as my 6 year old son says, "from the top of my heart to the bottom of my soul". It's what I've always wanted.
The thing is, they kinda get in the way. Well in MY way. I lament to people as I arrive late that I used to be in time. That "this isn't like me", but it is. It's the fact that the "me" that I refer to is the "me" before I had a family. Before I held other peoples responsibilities in my hands. That "me" is gone and even though everyone else knew it, I didn't. Nice joke, huh?
This is the "new me" who is late and who means well, but forgets she not only has to figure in the time it'll take her to eat, clean herself up and drive to her destination, but also for the "others". They are the family I wished for that stops me to ask "can you help me real quick" or "where is my shirt" or "where are you going?". If it weren't for the speed bumps I meet on the way out the door, I'd probably be on time to most things.
These little speed bumps even caused me to stop this post. I was working on it & my youngest speed bump needed help on homework. I stopped to help him & he was too frustrated so figuring he needed a break, I sent him out to play. Apparently, this did not register because he argued with me that he just didn't understand it. I repeatedly told him to go outside and he continued to believe it was somehow a trick on him. I couldn't believe it. And he kept crying which, frankly, stomped on my last nerve and I yelled. Yep. "Perfect Mom" (not my words) yelled. He needed a break & so did I. I looked at him and said he was too upset too work and should go play for a while. It seemed so simple and yet it took me 10 minutes to convince him. During this I had to save where I was on this post and come back later; 10 days later. Here I am again with attempt #2.
Back to the ups & downs of MS. The thing with MS is you have to treat your life as if it just began. It isn't like being born again, but you have been given a new label that comes with a new skin and that takes time to get to know the new you. I tell other MSers that MS shouldn't define you and you are still the same person you always were on the inside. That is very true. However, you need to also learn how the inside you relates to the new outside you.
This could be as simple as leaving post it notes to remind yourself of appointments, chores or that you have a pot boiling on the stove. It also could be as elaborate as developing a routine in order to be your best to go to a wedding you're looking forward to by napping early, having someone drive you there and arranging for assistance by the staff or a friend when it comes to parking, wheelchair accessibility and getting your plate from the buffet to the table without dropping bits of your food along the way.
The ups & downs will always be there and come without warning, but as we slowly learn and actually pay attention to the "new me" we have become, we can be proactive. There will be some patterns that can be predictable. On the flip side of that, we need to educate those around us that even the best planning can fail. MS has a mind of it's own, so plans will be cancelled, we will be late and we will be angry that it trumped our efforts. If planning and knowing our patterns were all it took then we would know how to cure this damn disease!
We have to teach ourselves, our families and friends to understand we are along for a ride and we can only control so much of it. Don't give up! Have Plan A, B & C in place for each possibility MS can throw your way. That can help. Be honest with people and yourself. I love my family and I love my life, even with MS. I'm starting to add in that extra time buffer to accommodate those last minute requests from my family. I am noticing I'm on time more often. I'm a firm believer in taking the extra minute or two if your child needs that extra hug as you go out the door. I've said that even before MS came to my attention. If I'm 2 minutes late and I gave the hug my child needed then I feel so much better than if I was on time and blew it off cuz "I didn't have time".
Pick your moments. Live your life. Help people understand and avoid those who refuse to try. Find the joy in little things and make time for the people you love. Personally, I am a person who follows the rules, but I know some rules are made to be broken. I think rules help guide people to do the right thing, but we all need to be willing to bend when circumstances change what the right thing is in the situation. My favorite motto is "Hope for the best, but plan for the worst". For me, I want to know what I will do if the worst happens, but I don't dwell on that because I focus on the best outcome. MS may present each of us with different hurdles to face, but we can learn to jump them as we go along together. Especially when we fall flat on our asses. The best friends will be by your side laughing as hard as you are or share your tears as you cry. Either way you are not alone as MS takes us up & down!
Tuesday, November 6, 2012
Monday, October 8, 2012
MS Stealing My Spotlight
Today, I am lying straight in the middle of happiness & frustration. I am happy that I am getting so many benefits from my physical therapy. I am at that point when I have regained balance and am functioning enough to feel like I can manage walking without being scared I will fall at any moment. Falling is typically in the back of my mind, but after & during a flare the road ahead is much more shaky. So I am better at my walking and my balance is much better, so now my pt moves forward with strength training along with balance training. I can feel my arms and legs getting stronger each time I'm there. It makes me feel hopeful and, well, kind of like a super hero. Really, it does. The control it gives me back makes me feel like I can take on the world and even chase MS around the corner to hide in fear. For a day or two. Not a cure, but a definite help.
So why the frustration part? I'm tired. I'm really tired the past 2 days. My legs have felt rubbery and some pain too. And my face is hot or well... weird. Over the Summer I began to notice this new MS phenomenon occurring on my face. It has been very strange. Typically, in my whole four year MS experience, I would become red on my cheeks if I became overheated. Flushed, but on an advanced level because the red would be darker than an average "blush". If I was in the sun too long, it would show like a sunburn & people would comment about it. This summer this began to change for me.
I could feel the change. I can feel my face become red. It is a weird sensation. My cheeks feel as though they are changing to rubber or something is lying across my face, like a mask. It gets a numbness almost to it, but I'm not touching it & if I do touch my face, the spot I touch loses the "numbness" for that moment. The redness not only is on my cheeks, but also as a circle of redness on my chin & forehead & nose. Yep. The clown image you are now imaging has not escaped my thoughts either. I've had people tell me I need to put on sunscreen, that I'm getting sunburned or asking if I'm ok. The feeling of my face reminds me of that tightness you feel when you use a facial mud mask on your face & it has dried all the way & is time to remove it. Except it's my actual face so it'll be staying in place.
Here's the kicker. This can happen when I'm indoors, in air conditioning & sitting on the couch. It's MS. It's my new sign. The sign that I need to slow down or that my MS is debating a flare. It doesn't always lead to one, but it is a "warning" to myself. It's happening now. Right as I type this and that's why I am frustrated. I've been taking good care of myself. If I need a break, I take one. I don't overdue it and I have been pacing myself. Today, I went to PT at 8:30am and was home by 11am and had lunch with my husband. I put my feet up to watch a show with him & I could feel it starting. the slow creep of redness and tightness across my cheeks. The heat or burn spreading across my cheeks.
The first time I felt it happening I had to stop & think of where I was. I was not moving too much or taking on extra stress. I was sitting in a cool environment and answering an email. I turned to husband and asked "Are my cheeks red?" Husband (H): "Ya, why?" Me (M): "Because I can feel it. Are my forehead and chin red too? Like 2 little circles?" H: "Yes, what's going on?" M: "MS. It's my new tell. My new sign that MS is lurking. It used to only happen if I was overheated from the weather or during some physical exertion. Since this last flare I've felt my face change and it does it at all different times now." When I'm out now & people will say, you need to get out of the sun or you have a bad sunburn. I have to ask them if my chin and forehead are red too? If they respond yes then I have to explain that it is MS and another weird byproduct of it for me.
So today, I feel like a superhero with a face of the villain after he'd had acid thrown on his face. Happy and frustrated. I will relax and take care of myself and hope that it is not the beginning of a flare because MS has taken enough time from me this Summer and as far as I'm concerned it only can have a recurring role the rest of 2012. I will be the star of my show and MS needs to quit trying to steal my spotlight.
So why the frustration part? I'm tired. I'm really tired the past 2 days. My legs have felt rubbery and some pain too. And my face is hot or well... weird. Over the Summer I began to notice this new MS phenomenon occurring on my face. It has been very strange. Typically, in my whole four year MS experience, I would become red on my cheeks if I became overheated. Flushed, but on an advanced level because the red would be darker than an average "blush". If I was in the sun too long, it would show like a sunburn & people would comment about it. This summer this began to change for me.
I could feel the change. I can feel my face become red. It is a weird sensation. My cheeks feel as though they are changing to rubber or something is lying across my face, like a mask. It gets a numbness almost to it, but I'm not touching it & if I do touch my face, the spot I touch loses the "numbness" for that moment. The redness not only is on my cheeks, but also as a circle of redness on my chin & forehead & nose. Yep. The clown image you are now imaging has not escaped my thoughts either. I've had people tell me I need to put on sunscreen, that I'm getting sunburned or asking if I'm ok. The feeling of my face reminds me of that tightness you feel when you use a facial mud mask on your face & it has dried all the way & is time to remove it. Except it's my actual face so it'll be staying in place.
Here's the kicker. This can happen when I'm indoors, in air conditioning & sitting on the couch. It's MS. It's my new sign. The sign that I need to slow down or that my MS is debating a flare. It doesn't always lead to one, but it is a "warning" to myself. It's happening now. Right as I type this and that's why I am frustrated. I've been taking good care of myself. If I need a break, I take one. I don't overdue it and I have been pacing myself. Today, I went to PT at 8:30am and was home by 11am and had lunch with my husband. I put my feet up to watch a show with him & I could feel it starting. the slow creep of redness and tightness across my cheeks. The heat or burn spreading across my cheeks.
The first time I felt it happening I had to stop & think of where I was. I was not moving too much or taking on extra stress. I was sitting in a cool environment and answering an email. I turned to husband and asked "Are my cheeks red?" Husband (H): "Ya, why?" Me (M): "Because I can feel it. Are my forehead and chin red too? Like 2 little circles?" H: "Yes, what's going on?" M: "MS. It's my new tell. My new sign that MS is lurking. It used to only happen if I was overheated from the weather or during some physical exertion. Since this last flare I've felt my face change and it does it at all different times now." When I'm out now & people will say, you need to get out of the sun or you have a bad sunburn. I have to ask them if my chin and forehead are red too? If they respond yes then I have to explain that it is MS and another weird byproduct of it for me.
So today, I feel like a superhero with a face of the villain after he'd had acid thrown on his face. Happy and frustrated. I will relax and take care of myself and hope that it is not the beginning of a flare because MS has taken enough time from me this Summer and as far as I'm concerned it only can have a recurring role the rest of 2012. I will be the star of my show and MS needs to quit trying to steal my spotlight.
Friday, October 5, 2012
My Apology
I want to apologize to anyone who still has attempted to follow my blog, Pick Tammy's Brain. After my hospital stay, I was solely focused on recovering and the Summer heat made that a challenge. I intend to begin adding posts beginning this Monday October 8th. (Yes in 2012!) If you've hung around long enough to read this post then I hope you will stay faithful as I begin anew. Have a happy and healthy weekend! Much Love & Kisses to you all!!!
Tammy
Tammy
Wednesday, August 1, 2012
My Mind Numbing Adventure Part # 2
At some point I fell asleep, hard because next thing I know I wake up in some other part of the hospital and my mom has a blanket on her in the chair next to me. It's 8am and we are STILL in the ER. I still have NOT had an MRI. And I still have NO answers. A new staff has come on duty. I ask what is going on? I'm told that the MRI staff has to "fit me in" around their already scheduled patients. I'm told I'm admitted, but they are waiting on a bed to "open up". I'm told they can't feed me until after I have the MRI with no time in sight.
I lose it for the first time (there will be another time too).
I said "I want to know what's going on?"
Nurse (N): "What do you mean?"
Me: "What do I mean? What do I MEAN? I've been here all night and I still don't have any answers."
N: "Well we can't get you into the MRI until they are ready to get you."
Me: "I don't understand."
N: "What is it you don't understand?"
Me: I don't understand why my neuro tells me to get here asap and to call an ambulance if necessary, but when I get here you do an EKG & stick me in the waiting room for over an hour. I don't understand why I've been here all night and I still don't have my MRI done. I don't understand why nothing is happening when my neuro is the one who said this was an emergency situation, but none of you are treating it like it is!"
N: "What is it that you want us to do? We don't have a room yet and they aren't ready for you in MRI?"
Me: "I want you to get me some answers. Wait, You know what? Get my neuro on the phone. I want to talk to him myself."
N: "Well we can page him and ask your questions."
Me: "No. I want to talk to him myself. After he returns your call, I want to talk to him."
N: "But we'll have to get you out to the front desk and you can't get of bed."
Me: Your problem, not mine. I WANT TO TALK TO MY NEURO!!!! NOW!!!!"
N: "Fine. I'll have him paged."
Me: "Thank you."
Within a half hour, they say he's on the phone and after several attempts to transfer him to the phone near me, they finally wheel my whole stretcher/bed out to the front desk.
Neuro: Hi Tamera, what's going on?"
Me: "I'm still in the ER. I still haven't had my MRI. I haven't been allowed to eat, even though I told them I don't need to fast for an MRI. No one has done anything to treat this like an emergency and I don't know what to do."
Neuro "We have to get you out of that ER. They don't know how to treat you there."
Me: "I know!"
Neuro: "I'll tell them you can eat. And I'll see about getting you into a room faster and find out why your MRI hasn't been ordered. I did that last night."
Me "Thank you"
Neuro: "I'll have to see if your neuro has privileges there, if not I will come. If it's me, I will be coming. It just will be later tonight."
Me"That's fine as long as someone is coming from the practice."
Neuro "I will. Get some rest and hopefully we can have some answers soon. I'll see you later.
Me :"I hope so. Thanks. Bye." Hand phone back to desk nurse.
Me to my nurse "He said I can eat & he's coming later."
Nurse: "Ok I'll see about getting you some food."
Around Noon, my husband has come back to see me for awhile and my kids are in the waiting room. I tell him to take them home, but I want to say goodbye first. Now since I am STILL in the ER there are signs posted stating "No one under 12 yrs old may visit". I get that. However...
I am still in the ER, but "admitted" but they don't have a bed for me yet after 16 hrs. Not really my problem. So a medical assistant comes in, now I know what you'll be thinking, but I did get names of most of the staff that helped me. I missed hers.
She comes in & I tell her I want to see my kids before they leave. She says children aren't allowed back here. I tell her I understand that, but that the hospital doesn't have a room for me yet & if I did I could see them. I'm admitted and they are scared and need to see me before they leave.
She says, "well they can't come back." So I tell her to bring me out to them. She refuses that too. I tell her one way or another, I will see them.
She tells me no and that I'm on an IV and that they can't come in under 12. Foolish girl doesn't know me. I told her I absolutely will see them and that I am still waiting for my food.
She says, "I'm sure someone ordered you a tray."
That was all it took. "Oh, you're sure are you? Are you really sure? Because I'm sure that I've been promised food since 2 in the morning and I'm still waiting. So don't tell me your sure someone ordered one for me. "
She said, "You know, you can leave." I'd love that." She says well it'd be against medical advice." Me: "Honey, I would leave if I could. Unfortunately, I need medical help to figure out why I can't walk, so I'm stuck here. Now let me see my kids!"
She said, "no" and walked out.
I looked at my husband and told him to go stand by the front of my "curtain" and see who he could see. He looks and says no one.
Keep watching. He says he sees a blonde nurse. "Oh that's Diane! Get her."
What do you expect ME to do?"
I don't. Just get her attention. He does.
She comes in.
I say, "Diane, look I know I'm being a pain in the ass..."
D: "no you're not."
Me: " I am, but my husband has to go to work & my mom needs to go home to sleep. The problem is my kids have been waiting to see me & their scared. I just want to tell them good bye and not to worry."
D: "How old are they?"
Me: "Only 10 & 6 years old. I know your sign says 12, but I should be in a room already. Please can they come in or can I go out? I have no IV hook up or anything." (I never did have an IV. The last MA saw the old stand behind me. )
D: "Absolutely, Sweetie! Let me get you a wheelchair."
She wheeled me out & said to let her know when I was done. I visited for about 15 mins and then came back in. The best part was wheeling in right past the girl who said there was "no way I'd see my kids."
Don't underestimate me.
Best part is after they left, my food finally came. As I lifted the lid to reveal some questionable food, my friend arrived with a hamburger & fries plus fresh fruit and homemade soup.
Look at me living it up. :)
I finally got into a room at 3pm on the neuro ward. The staff up there and even any other staff I met through transfers etc. were wonderful, patient and kind. The neuro nurse was really angry when she revealed at 3:00 AM orders were put thru that I needed an MRI STAT. It was 3:00 PM. She definitely got stuff moving then.
Eventually I regained feeling in my arm and both legs. I'm in PT now. My number one lesson I take away from this is I will have my neuro call ahead BEFORE I leave for the ER and have the neuro floor ready for me. Live & learn.
I'm still waiting on food. She says, "I'm sure someone's ordered you a tray.'
I lose it for the first time (there will be another time too).
I said "I want to know what's going on?"
Nurse (N): "What do you mean?"
Me: "What do I mean? What do I MEAN? I've been here all night and I still don't have any answers."
N: "Well we can't get you into the MRI until they are ready to get you."
Me: "I don't understand."
N: "What is it you don't understand?"
Me: I don't understand why my neuro tells me to get here asap and to call an ambulance if necessary, but when I get here you do an EKG & stick me in the waiting room for over an hour. I don't understand why I've been here all night and I still don't have my MRI done. I don't understand why nothing is happening when my neuro is the one who said this was an emergency situation, but none of you are treating it like it is!"
N: "What is it that you want us to do? We don't have a room yet and they aren't ready for you in MRI?"
Me: "I want you to get me some answers. Wait, You know what? Get my neuro on the phone. I want to talk to him myself."
N: "Well we can page him and ask your questions."
Me: "No. I want to talk to him myself. After he returns your call, I want to talk to him."
N: "But we'll have to get you out to the front desk and you can't get of bed."
Me: Your problem, not mine. I WANT TO TALK TO MY NEURO!!!! NOW!!!!"
N: "Fine. I'll have him paged."
Me: "Thank you."
Within a half hour, they say he's on the phone and after several attempts to transfer him to the phone near me, they finally wheel my whole stretcher/bed out to the front desk.
Neuro: Hi Tamera, what's going on?"
Me: "I'm still in the ER. I still haven't had my MRI. I haven't been allowed to eat, even though I told them I don't need to fast for an MRI. No one has done anything to treat this like an emergency and I don't know what to do."
Neuro "We have to get you out of that ER. They don't know how to treat you there."
Me: "I know!"
Neuro: "I'll tell them you can eat. And I'll see about getting you into a room faster and find out why your MRI hasn't been ordered. I did that last night."
Me "Thank you"
Neuro: "I'll have to see if your neuro has privileges there, if not I will come. If it's me, I will be coming. It just will be later tonight."
Me"That's fine as long as someone is coming from the practice."
Neuro "I will. Get some rest and hopefully we can have some answers soon. I'll see you later.
Me :"I hope so. Thanks. Bye." Hand phone back to desk nurse.
Me to my nurse "He said I can eat & he's coming later."
Nurse: "Ok I'll see about getting you some food."
Around Noon, my husband has come back to see me for awhile and my kids are in the waiting room. I tell him to take them home, but I want to say goodbye first. Now since I am STILL in the ER there are signs posted stating "No one under 12 yrs old may visit". I get that. However...
I am still in the ER, but "admitted" but they don't have a bed for me yet after 16 hrs. Not really my problem. So a medical assistant comes in, now I know what you'll be thinking, but I did get names of most of the staff that helped me. I missed hers.
She comes in & I tell her I want to see my kids before they leave. She says children aren't allowed back here. I tell her I understand that, but that the hospital doesn't have a room for me yet & if I did I could see them. I'm admitted and they are scared and need to see me before they leave.
She says, "well they can't come back." So I tell her to bring me out to them. She refuses that too. I tell her one way or another, I will see them.
She tells me no and that I'm on an IV and that they can't come in under 12. Foolish girl doesn't know me. I told her I absolutely will see them and that I am still waiting for my food.
She says, "I'm sure someone ordered you a tray."
That was all it took. "Oh, you're sure are you? Are you really sure? Because I'm sure that I've been promised food since 2 in the morning and I'm still waiting. So don't tell me your sure someone ordered one for me. "
She said, "You know, you can leave." I'd love that." She says well it'd be against medical advice." Me: "Honey, I would leave if I could. Unfortunately, I need medical help to figure out why I can't walk, so I'm stuck here. Now let me see my kids!"
She said, "no" and walked out.
I looked at my husband and told him to go stand by the front of my "curtain" and see who he could see. He looks and says no one.
Keep watching. He says he sees a blonde nurse. "Oh that's Diane! Get her."
What do you expect ME to do?"
I don't. Just get her attention. He does.
She comes in.
I say, "Diane, look I know I'm being a pain in the ass..."
D: "no you're not."
Me: " I am, but my husband has to go to work & my mom needs to go home to sleep. The problem is my kids have been waiting to see me & their scared. I just want to tell them good bye and not to worry."
D: "How old are they?"
Me: "Only 10 & 6 years old. I know your sign says 12, but I should be in a room already. Please can they come in or can I go out? I have no IV hook up or anything." (I never did have an IV. The last MA saw the old stand behind me. )
D: "Absolutely, Sweetie! Let me get you a wheelchair."
She wheeled me out & said to let her know when I was done. I visited for about 15 mins and then came back in. The best part was wheeling in right past the girl who said there was "no way I'd see my kids."
Don't underestimate me.
Best part is after they left, my food finally came. As I lifted the lid to reveal some questionable food, my friend arrived with a hamburger & fries plus fresh fruit and homemade soup.
Look at me living it up. :)
I finally got into a room at 3pm on the neuro ward. The staff up there and even any other staff I met through transfers etc. were wonderful, patient and kind. The neuro nurse was really angry when she revealed at 3:00 AM orders were put thru that I needed an MRI STAT. It was 3:00 PM. She definitely got stuff moving then.
Eventually I regained feeling in my arm and both legs. I'm in PT now. My number one lesson I take away from this is I will have my neuro call ahead BEFORE I leave for the ER and have the neuro floor ready for me. Live & learn.
I'm still waiting on food. She says, "I'm sure someone's ordered you a tray.'
My Mind Numbing Adventure Part #1
Adventure. Adventure? I'm not too sure. Definitely a first for myself. I would count this trip to the hospital my first "adventure" there directly from MS. I did have a 24 hour stay in October 2011, but technically I went because of an allergic reaction to antibiotics meant to keep OUT of the hospital. I had the threat of a urinary tract infection and when you are receiving IV Steroids for a MS Flare they lower your immunity to fight off infections, at that time they wanted me to first get started on some antibiotics so the UTI didn't turn into a more dangerous infection. Ironically, I was allergic to those meds and they are what sent me to the ER, MS kept me overnight for the IV Steroids. But I digress.
This time it was MS that took me there and admitted me for 3 days. Adventure? Hmmmm. It was interesting. It was scary. It was unexpected. It was unpredictable. There was drama. There was suspense. There was fear and even some comedy bits thrown in. I suppose these are elements needed for a great adventure, but to me it felt differently.
As I told you in some of my last posts, I have had lots of drama surrounding my MS with repeated tests for MS diagnosis, including a spinal tap. I also, was in an MS Flare brought on by the stress of all of this, not to mention the Summer heat. So, the spinal tap was Tues. 6/19th followed by 2 days flat, in bed, bored and with every other muscle in my body in pain because of this lack of movements and lying in bed for 48 hrs. This was followed by 2 days of IV Steroids and a blood patch (when they take some of your own blood and inject where the spinal tap was given to encourage your body to clot the hole created by the spinal tap) since the headache was still growing.
All that was completed that Friday 6/22nd, but by Saturday afternoon the headache was returning. I filled the pain prescription originally given to me for the spinal tap, if needed. I needed it since it was the weekend and I wanted to try to hold off to talk to my dr on Monday. The meds helped a little. On Sunday, my family helped me delivering newspapers. My husband & daughter took my regular route to throw papers door-to-door, or really porch-to-porch. My son & myself, sat in the car and put flyers with sample newspapers into bags and eventually headed out to throw them out the window into driveways. Both tasks are time consuming, but the sample throwing was less of a strain on my body.
I came home with my son around 9am and my husband and daughter returned by 10am. Normally, I would not get home until 1 or 2pm on Sunday, so the help was invaluable. Once, I was home and settled, I plopped my butt in our recliner and wrote thank you notes for my MS Walk and Family Game Night donations. I got a really good start, but didn't finish them all. I didn't really get a chance to take a nap before my body decided to rebel against me.
It started with some tension in my neck which isn't unusual as I get tension headaches. While I had received my nerve blockers, I had yet to start physical therapy (PT) to help alleviate them further. So tension in my neck that then seemed to spread down to my right arm and was not only numbing it, but making my arm seem very heavy. I comment to my family about it, but no one seems overly concerned at this point. (I get it. Sometimes my health is so overwhelming that it can cause indifference. With everything I've gone through in the past couple of weeks, this last week took a toll on them too.)
Then the numbness and heaviness starts to go into my right leg as well. I tell my family who want to know what this means. I don't know! I decide to call my neuro on the after hours line. I tell the operator what is going on and she says she will contact the dr on call. 20 mins pass. The recording before the operator did mention that the neuro may not call back if he determines your issue can wait until regular business hours. I find this weird because who would call that if there wasn't a real emergency or at least what the patient feels is NOT normal? However, there are all kinds of people in the world who do create more drama then necessary. I call the answering service again and explain it's my second call and that I had a spinal tap recently including IV Steroids and this is my second message for the neuro.
I decide to call my dear friend, Kelly Q. who not only has MS, but has her pharmacist license. Her boyfriend tells me their about to sit down for dinner, but I say I need to talk to her about my health and it's important. I'm NOT the person to push on petty things so she comes to the phone knowing it must be important. I tell her about my numb arm and into my leg & she asks if it's just numb or is it also heavy? I tell her I just used that exact word, heavy, to describe how it felt. She says that if I don't talk to neuro soon I need to go to the ER because this is one of those things that if let gone too long can determine what nerves do and do NOT come back. Permanently. We speak about other things I should be telling the ER and my other line rings from the neuro. I say good bye and switch lines to tell neuro my story. He says "Go to the ER. Don't mess around with this. Go to the ER now. I don't care if you drive or call an ambulance, but go now." I said ok and thanks. I hang up and tell my husband who immediately thinks the worst. I call my mother to take me so my husband can stay with the kids and I can stay relaxed.
I know what you're thinking. My husband should take me and my mom should stay with the kids, right? No. I'm sure we all know those people who are good in a crisis and who are not. We also know the people who don't do well waiting. My husband does not do well waiting at the hospital. He becomes uncomfortable in the crappy chairs, as we all do, and has no patience waiting for doctors. Basically, his being uncomfortable and being inpatient feed into his fear and then he starts to get angry at what is taking so long. This then causes the effect of me worrying about him and stressing over every little move or groan that may lead to an outburst. Don't get me wrong. I have an amazing husband who is supportive and caring in so many ways. For this, I have learned I need him to stay home until there is a reason he NEEDS to be there. Bringing my mom, I know she's uncomfortable, but she's there for the duration and willingly. As long as I can keep her from going "Terms of Endearment" ala Shirley McClain on the emergency staff, we're good. ;)
My husband helps me to the car and I tell the kids not to worry and off we went. We went to the hospital in the suburbs rather than the city one where I normally go. People always ask why I don't go to the suburb one cuz it's "less busy" and "you'll avoid getting put behind all the gun shot wounds". It's in Detroit, not smack in the middle, but on the Detroit border. A good hospital where I was born as well as both of my children. I decide to buy into all of the pressure from said comments. Mistake. This hospital is in the same group as far as the name, but not all of the privileges given at one hospital transfer to this one. Also, the recent closure of the bi-county hospital has caused their hospital to go into overload. When we arrive, I can't feel the left leg either and can barely lift both now. I'm taking in by wheelchair to sign in. When they take me back to triage, they do a quick EKG and then stick me back into the waiting area.
This confuses me as my neuro made it sound pretty urgent that I get there. After an hour and a half, I'm finally brought to the back am helped/lifted into bed, stripped of my clothing (that was a little humiliating that I couldn't take off my own clothes.) and told they have a call into my neuro. Once they speak with him and have the resident dr see me they order a CT Scan with blood work. After that, back to bed in ER. I fall asleep, mom in chair beside me. Morning comes, nothing has been done. I'm told they spoke with neuro and he ordered me admitted and an MRI at 2 am. Unfortunately, they don't have any beds for me yet. (End Part #1)
This time it was MS that took me there and admitted me for 3 days. Adventure? Hmmmm. It was interesting. It was scary. It was unexpected. It was unpredictable. There was drama. There was suspense. There was fear and even some comedy bits thrown in. I suppose these are elements needed for a great adventure, but to me it felt differently.
As I told you in some of my last posts, I have had lots of drama surrounding my MS with repeated tests for MS diagnosis, including a spinal tap. I also, was in an MS Flare brought on by the stress of all of this, not to mention the Summer heat. So, the spinal tap was Tues. 6/19th followed by 2 days flat, in bed, bored and with every other muscle in my body in pain because of this lack of movements and lying in bed for 48 hrs. This was followed by 2 days of IV Steroids and a blood patch (when they take some of your own blood and inject where the spinal tap was given to encourage your body to clot the hole created by the spinal tap) since the headache was still growing.
All that was completed that Friday 6/22nd, but by Saturday afternoon the headache was returning. I filled the pain prescription originally given to me for the spinal tap, if needed. I needed it since it was the weekend and I wanted to try to hold off to talk to my dr on Monday. The meds helped a little. On Sunday, my family helped me delivering newspapers. My husband & daughter took my regular route to throw papers door-to-door, or really porch-to-porch. My son & myself, sat in the car and put flyers with sample newspapers into bags and eventually headed out to throw them out the window into driveways. Both tasks are time consuming, but the sample throwing was less of a strain on my body.
I came home with my son around 9am and my husband and daughter returned by 10am. Normally, I would not get home until 1 or 2pm on Sunday, so the help was invaluable. Once, I was home and settled, I plopped my butt in our recliner and wrote thank you notes for my MS Walk and Family Game Night donations. I got a really good start, but didn't finish them all. I didn't really get a chance to take a nap before my body decided to rebel against me.
It started with some tension in my neck which isn't unusual as I get tension headaches. While I had received my nerve blockers, I had yet to start physical therapy (PT) to help alleviate them further. So tension in my neck that then seemed to spread down to my right arm and was not only numbing it, but making my arm seem very heavy. I comment to my family about it, but no one seems overly concerned at this point. (I get it. Sometimes my health is so overwhelming that it can cause indifference. With everything I've gone through in the past couple of weeks, this last week took a toll on them too.)
Then the numbness and heaviness starts to go into my right leg as well. I tell my family who want to know what this means. I don't know! I decide to call my neuro on the after hours line. I tell the operator what is going on and she says she will contact the dr on call. 20 mins pass. The recording before the operator did mention that the neuro may not call back if he determines your issue can wait until regular business hours. I find this weird because who would call that if there wasn't a real emergency or at least what the patient feels is NOT normal? However, there are all kinds of people in the world who do create more drama then necessary. I call the answering service again and explain it's my second call and that I had a spinal tap recently including IV Steroids and this is my second message for the neuro.
I decide to call my dear friend, Kelly Q. who not only has MS, but has her pharmacist license. Her boyfriend tells me their about to sit down for dinner, but I say I need to talk to her about my health and it's important. I'm NOT the person to push on petty things so she comes to the phone knowing it must be important. I tell her about my numb arm and into my leg & she asks if it's just numb or is it also heavy? I tell her I just used that exact word, heavy, to describe how it felt. She says that if I don't talk to neuro soon I need to go to the ER because this is one of those things that if let gone too long can determine what nerves do and do NOT come back. Permanently. We speak about other things I should be telling the ER and my other line rings from the neuro. I say good bye and switch lines to tell neuro my story. He says "Go to the ER. Don't mess around with this. Go to the ER now. I don't care if you drive or call an ambulance, but go now." I said ok and thanks. I hang up and tell my husband who immediately thinks the worst. I call my mother to take me so my husband can stay with the kids and I can stay relaxed.
I know what you're thinking. My husband should take me and my mom should stay with the kids, right? No. I'm sure we all know those people who are good in a crisis and who are not. We also know the people who don't do well waiting. My husband does not do well waiting at the hospital. He becomes uncomfortable in the crappy chairs, as we all do, and has no patience waiting for doctors. Basically, his being uncomfortable and being inpatient feed into his fear and then he starts to get angry at what is taking so long. This then causes the effect of me worrying about him and stressing over every little move or groan that may lead to an outburst. Don't get me wrong. I have an amazing husband who is supportive and caring in so many ways. For this, I have learned I need him to stay home until there is a reason he NEEDS to be there. Bringing my mom, I know she's uncomfortable, but she's there for the duration and willingly. As long as I can keep her from going "Terms of Endearment" ala Shirley McClain on the emergency staff, we're good. ;)
My husband helps me to the car and I tell the kids not to worry and off we went. We went to the hospital in the suburbs rather than the city one where I normally go. People always ask why I don't go to the suburb one cuz it's "less busy" and "you'll avoid getting put behind all the gun shot wounds". It's in Detroit, not smack in the middle, but on the Detroit border. A good hospital where I was born as well as both of my children. I decide to buy into all of the pressure from said comments. Mistake. This hospital is in the same group as far as the name, but not all of the privileges given at one hospital transfer to this one. Also, the recent closure of the bi-county hospital has caused their hospital to go into overload. When we arrive, I can't feel the left leg either and can barely lift both now. I'm taking in by wheelchair to sign in. When they take me back to triage, they do a quick EKG and then stick me back into the waiting area.
This confuses me as my neuro made it sound pretty urgent that I get there. After an hour and a half, I'm finally brought to the back am helped/lifted into bed, stripped of my clothing (that was a little humiliating that I couldn't take off my own clothes.) and told they have a call into my neuro. Once they speak with him and have the resident dr see me they order a CT Scan with blood work. After that, back to bed in ER. I fall asleep, mom in chair beside me. Morning comes, nothing has been done. I'm told they spoke with neuro and he ordered me admitted and an MRI at 2 am. Unfortunately, they don't have any beds for me yet. (End Part #1)
Friday, June 22, 2012
On The Mind Mend Again
I had a headache unlike any other I've experienced. However it truly did not live up to the description of my MS Spinal Tap Family & Friends description, so I assumed it could not be that. With mine, sitting up was fine. Staying cool was fine. Walking and getting over heated...not so much. It hurt, made me feverish and sweaty and nauseous.
After some Tylenol and my first IV Steroid infusion it went away. I thought it was still my tension headache. I was wrong. I became hot, clammy and the headache started booming in my head. I wen to the bathroom and grabbed ibuprofen, walked to kitchen took it with water. I looked down and noticed my elbows were sweating. My elbows, at the inside bend. My head was sweating. I opened the freezer and grabbed an ice pack so I could go sit down and cool off. Closed the freezer door, put the ice pack on my neck and my legs buckled and my lights went out and I hit the kitchen floor. I was only out for a second or 2 cause I remember thinking that the a/c just l kicked on and the kitchen vent was now blowing right on me. Good, right?
I hear my daughter, Kristina age 9, say " Mom, did you just fall?" Me "I'm ok." K walks in. "Do you want me to call someone?" Me "Not yet. Can you gt the bigger ice pack and put it on my back , please?" I'm lying face down" K "O..kaay. Sure. I can go get someone too." She puts ice pack on me. Paul age 6 comes in. He rubs my back. "Are you ok?" Me "Yes Sweetie. My head hurts. I need to cool down my body first. Paul "I can run fast." Me "I know, Baby. Just give me a sec."
They leave to go clean up their Legos for a min. She comes back. K "Should I get someone now?" Me. Not yet. Ass long as i am talking to you, we can wait. If I stop talking you can call someone. Wait, if I stop talking then you go get someone. One of the neighbors off our trusted list on the fridge." (They know what I am doing this week so they can help.) She says ok and goes to finish her cleaning.
She comes back. K "Still talking Mom?" Me "Yes. I'm cooler now." I roll over onto my side. I ask Kristina to look in my oven and check the chicken cause the timer is going off. She describes how it looks so I tell her how much longer to put on the timer. I tell her how to finish the dinner. I sit up to stir some potatoes in a bowl on the floor. I lay down. When the chicken is ready to come out, she hands me oven mitts and I pull out the chicken and put in the potatoes. Otherwise, she finishes. I roll onto my back and text my sister, Shelly. She asked 5 mins before all of this happened if she should stop by. I was doing ok then. She calls me and asks what I'm doing. I tell her laying on my kitchen floor. She's mad, but really worried. She comes over and gets me to the couch recliner. Talks to me and gets us all fed and kids bathed. She does the dishes and gets me and the kids to my bed to watch a movie. (Oh in the mist of all of this manages to let my husband know what is going on.) Amazing as always, Shelly! (She has always been my mini-me hero. I try to tell her, to use her gift wisely enough that she doesn't lose herself. At first her balance shifted too far both ways. I think she is starting to find a little more balance. She makes me proud)
Before I go to bed I call my boss to let him know I had a little set back, but I am still going to attempt the paper route. The same thing happens while I'm delivering, except the passing out part. I become hot and nauseous and the headache grows with each step. I finish over half, but I have to stop. I call him to tell him where I will leave my papers for him to finish. I will let him know what the doctor says.
I had IV infusion today and asked to see Pain Mgt Specialist who did my spinal tap. He listens to my symptoms and I tell him I followed his rules: 48 hrs flat, lots of water and add in caffeine. He says sometimes the body doesn't cooperates and apologizes. Nice. I like a doctor who does that, but I told him it isn't his fault either. Both of us did what we were supposed to do. He says, I don't present with a typical spinal headache because sitting up and cool temp, no headache. Standing and walking headache. We both agree to a Blood Patch. A Blood Patch is when the doctor takes my own blood and reinserts the needle where the spinal tap was done. Deep into that tissue. The idea is the body didn't naturally clot, or in my case, clot enough to close the hole so spinal fluid may still be leaking. if my own blood is inserted the theory is my own blood will encourage and begin the clot.
So I had the Blood Patch after my infusion. Doctor said most people feel relief almost instantly. He said if that isn't the case this could be some crazy MS thing and the steroids should help. He said he'd call Monday to check on me, but to call the after hours line if I need him sooner. I didn't have instant relief, but i had mostly. So far, the pain is minimal to none. I'm at the time where it all went horribly wrong yesterday. Hoping I stay far away from that incident. Sitting here is good, but we know that isn't the problem. For you, go with the no news is good news for now.
I have back up plans in place for the weekend work schedule if necessary to stay home and help for the work schedule if I feel ready to try. Either way, health first. Smiling again and ready to get back to my original mantra of "Keep Moving Forward"! So I am with a big hopeful smile on my face :) Try it!
After some Tylenol and my first IV Steroid infusion it went away. I thought it was still my tension headache. I was wrong. I became hot, clammy and the headache started booming in my head. I wen to the bathroom and grabbed ibuprofen, walked to kitchen took it with water. I looked down and noticed my elbows were sweating. My elbows, at the inside bend. My head was sweating. I opened the freezer and grabbed an ice pack so I could go sit down and cool off. Closed the freezer door, put the ice pack on my neck and my legs buckled and my lights went out and I hit the kitchen floor. I was only out for a second or 2 cause I remember thinking that the a/c just l kicked on and the kitchen vent was now blowing right on me. Good, right?
I hear my daughter, Kristina age 9, say " Mom, did you just fall?" Me "I'm ok." K walks in. "Do you want me to call someone?" Me "Not yet. Can you gt the bigger ice pack and put it on my back , please?" I'm lying face down" K "O..kaay. Sure. I can go get someone too." She puts ice pack on me. Paul age 6 comes in. He rubs my back. "Are you ok?" Me "Yes Sweetie. My head hurts. I need to cool down my body first. Paul "I can run fast." Me "I know, Baby. Just give me a sec."
They leave to go clean up their Legos for a min. She comes back. K "Should I get someone now?" Me. Not yet. Ass long as i am talking to you, we can wait. If I stop talking you can call someone. Wait, if I stop talking then you go get someone. One of the neighbors off our trusted list on the fridge." (They know what I am doing this week so they can help.) She says ok and goes to finish her cleaning.
She comes back. K "Still talking Mom?" Me "Yes. I'm cooler now." I roll over onto my side. I ask Kristina to look in my oven and check the chicken cause the timer is going off. She describes how it looks so I tell her how much longer to put on the timer. I tell her how to finish the dinner. I sit up to stir some potatoes in a bowl on the floor. I lay down. When the chicken is ready to come out, she hands me oven mitts and I pull out the chicken and put in the potatoes. Otherwise, she finishes. I roll onto my back and text my sister, Shelly. She asked 5 mins before all of this happened if she should stop by. I was doing ok then. She calls me and asks what I'm doing. I tell her laying on my kitchen floor. She's mad, but really worried. She comes over and gets me to the couch recliner. Talks to me and gets us all fed and kids bathed. She does the dishes and gets me and the kids to my bed to watch a movie. (Oh in the mist of all of this manages to let my husband know what is going on.) Amazing as always, Shelly! (She has always been my mini-me hero. I try to tell her, to use her gift wisely enough that she doesn't lose herself. At first her balance shifted too far both ways. I think she is starting to find a little more balance. She makes me proud)
Before I go to bed I call my boss to let him know I had a little set back, but I am still going to attempt the paper route. The same thing happens while I'm delivering, except the passing out part. I become hot and nauseous and the headache grows with each step. I finish over half, but I have to stop. I call him to tell him where I will leave my papers for him to finish. I will let him know what the doctor says.
I had IV infusion today and asked to see Pain Mgt Specialist who did my spinal tap. He listens to my symptoms and I tell him I followed his rules: 48 hrs flat, lots of water and add in caffeine. He says sometimes the body doesn't cooperates and apologizes. Nice. I like a doctor who does that, but I told him it isn't his fault either. Both of us did what we were supposed to do. He says, I don't present with a typical spinal headache because sitting up and cool temp, no headache. Standing and walking headache. We both agree to a Blood Patch. A Blood Patch is when the doctor takes my own blood and reinserts the needle where the spinal tap was done. Deep into that tissue. The idea is the body didn't naturally clot, or in my case, clot enough to close the hole so spinal fluid may still be leaking. if my own blood is inserted the theory is my own blood will encourage and begin the clot.
So I had the Blood Patch after my infusion. Doctor said most people feel relief almost instantly. He said if that isn't the case this could be some crazy MS thing and the steroids should help. He said he'd call Monday to check on me, but to call the after hours line if I need him sooner. I didn't have instant relief, but i had mostly. So far, the pain is minimal to none. I'm at the time where it all went horribly wrong yesterday. Hoping I stay far away from that incident. Sitting here is good, but we know that isn't the problem. For you, go with the no news is good news for now.
I have back up plans in place for the weekend work schedule if necessary to stay home and help for the work schedule if I feel ready to try. Either way, health first. Smiling again and ready to get back to my original mantra of "Keep Moving Forward"! So I am with a big hopeful smile on my face :) Try it!
Tuesday, June 19, 2012
My Brain & I Flat On Our Back
Here I am flat on my back, which frankly is worse than it sounds. I can't really tilt my head. Flat is just that. Flat. So I have the laptop at a weird angle so I can type and see what I'm doing. Which is mostly misspelling and using the backspace bar. This will be a short entry, as you can imagine.
I had my spinal tap today. Hence the lying on my back. Dr wants me this way for 48 hours. I know! I thought 24 hrs was bad enough. I'm not sure why 48 hrs vs 24 hrs. I did ask and he explained all the reasons for being flat. Basically, imagine punching a hole in a can of pop, but a pin hole size so it would drain slowly. That's what would be a visual for the spinal fluid and my body. Upright the fluid would continually drain slowly and eventually cause the dreaded spinal headache, which I hear is excruciatingly painful. If you turn, said pop can on it's side or flat the fluid would not drain out as quickly, if at all. ( I know I'm visualizing the pop coming out either way, but work with me here.) The idea is that gravity will work against my body's ability to not only replenish the spinal fluid it lost, but hinder the clotting process as well.
The longer I remain rested the quicker it can heal. As far as the longer time frame I can only conclude that because I am in a MS flare, that I would need more time to heal. Either way, I was not given a choice and was taken off work for 2 days. Not happy because as you can imagine, paper carriers do not get sick days. In fact, not only will my pay be lost, but a surcharge will probably be given. It's the nature of the business. Just would have planned ahead had I known. Anyways, health is a priority, so I will do as I am told. Well, for this anyway.
Tomorrow I am supposed to start IV Steroids, which I suppose will require me to not be completely flat for an hour or so. Who knows? The faster I can get the Flare healing the better. So I am straining my neck trying to see what I a writing so have to go. With that please remember my brain & I flat on our back working to find my smile a little more each day. It isn't hard right now. The humor of my predicament is quite amusing. :)
I had my spinal tap today. Hence the lying on my back. Dr wants me this way for 48 hours. I know! I thought 24 hrs was bad enough. I'm not sure why 48 hrs vs 24 hrs. I did ask and he explained all the reasons for being flat. Basically, imagine punching a hole in a can of pop, but a pin hole size so it would drain slowly. That's what would be a visual for the spinal fluid and my body. Upright the fluid would continually drain slowly and eventually cause the dreaded spinal headache, which I hear is excruciatingly painful. If you turn, said pop can on it's side or flat the fluid would not drain out as quickly, if at all. ( I know I'm visualizing the pop coming out either way, but work with me here.) The idea is that gravity will work against my body's ability to not only replenish the spinal fluid it lost, but hinder the clotting process as well.
The longer I remain rested the quicker it can heal. As far as the longer time frame I can only conclude that because I am in a MS flare, that I would need more time to heal. Either way, I was not given a choice and was taken off work for 2 days. Not happy because as you can imagine, paper carriers do not get sick days. In fact, not only will my pay be lost, but a surcharge will probably be given. It's the nature of the business. Just would have planned ahead had I known. Anyways, health is a priority, so I will do as I am told. Well, for this anyway.
Tomorrow I am supposed to start IV Steroids, which I suppose will require me to not be completely flat for an hour or so. Who knows? The faster I can get the Flare healing the better. So I am straining my neck trying to see what I a writing so have to go. With that please remember my brain & I flat on our back working to find my smile a little more each day. It isn't hard right now. The humor of my predicament is quite amusing. :)
Friday, June 15, 2012
Rocking My Mind All the Way to the Looney Bin
I think I'm being punked. I swear to God. I go to see Head neuro today. Not only do I "have MS". I can get steroids for the flare I'm in and they moved spinal tap up to help with seeing where progression is. He said what I've always known, that my MS is in the early stages so I'm not progressed enough with MS for the STUDY. Are you kidding me? Screw the study! I'll never volunteer for one again.
He says that even my MRIs have never really been bad enough for a classic MS case. Again, I know this. I have always been early on. He tells me he'll continue treating me as I have been because I respond well to what they've been doing so far. Until this crap hit the fan.
So Spinal Tap, Tuesday 9am. Steroid Infusions, W, Th, F. Before he leaves he says, "But if you stay in this mood we're gonna have to talk about counseling." I said, "THIS is not ME! YOU all did this to me! I'm happy and upbeat!" The nurse looked at him and said, "She's right. This isn't like her." Thank you! Oh and I'm allowed to see Wendy. Apparently that was never supposed to be a problem. Either I'm insane or I've been punked.
I'm offline til Monday. I'm exhausted! Happy that I don't have to stress about this anymore. Aggravated I've been forced into a flare, but happier or calmer anyway. Oh, and Research girl, gone! I guess she's been gone since I last saw her. Good riddance! Now you're fair game. Sleep with one eye open. Muhahahaha. I don't even know where she is, but I can pretend for a minute.
I will be sleeping this weekend as much as possible and then it's off to crazy land following steroids. Woo Hoo. Good times, folks. Happy Father's Day Weekend to all the good dad's out there. And to my husband, the best father I know, I love you <3 Thanks for standing by me through all of this.
He says that even my MRIs have never really been bad enough for a classic MS case. Again, I know this. I have always been early on. He tells me he'll continue treating me as I have been because I respond well to what they've been doing so far. Until this crap hit the fan.
So Spinal Tap, Tuesday 9am. Steroid Infusions, W, Th, F. Before he leaves he says, "But if you stay in this mood we're gonna have to talk about counseling." I said, "THIS is not ME! YOU all did this to me! I'm happy and upbeat!" The nurse looked at him and said, "She's right. This isn't like her." Thank you! Oh and I'm allowed to see Wendy. Apparently that was never supposed to be a problem. Either I'm insane or I've been punked.
I'm offline til Monday. I'm exhausted! Happy that I don't have to stress about this anymore. Aggravated I've been forced into a flare, but happier or calmer anyway. Oh, and Research girl, gone! I guess she's been gone since I last saw her. Good riddance! Now you're fair game. Sleep with one eye open. Muhahahaha. I don't even know where she is, but I can pretend for a minute.
I will be sleeping this weekend as much as possible and then it's off to crazy land following steroids. Woo Hoo. Good times, folks. Happy Father's Day Weekend to all the good dad's out there. And to my husband, the best father I know, I love you <3 Thanks for standing by me through all of this.
Thursday, June 14, 2012
Tripping On My Brain
Um, I guess not. I fell yesterday. Twice. I've fallen with my MS before, but never twice in the same day, let alone the same week. It was bad enough to leave muscle pain and bruises on my arm and leg. Both time on my right side. I think it might be the return of my foot drop. I had that leg brace I was using last year, but after physical therapy, I didn't need it anymore.
The thing is, even though my family knows I've been on the verge of a flare up since March & my Neuro-Opthomologist knows too, Head Neuro doesn't. He hasn't spoken to me. He hasn't examined me. He only met me once before blowing my life apart. (Stupid, Research girl)
Anyway, to him, I'll be lying. When I fell delivering my newspapers in a full smack on my right side across my customers driveway/lawn, I don't think anyone saw me. I was on the phone with my bluetooth,, so my friend heard me. If anyone did see me, they probably couldn't stop laughing long enough to come and help me.
The second fall was in Kmart. I was shopping with my kids and one of their friends. I had put my cane in the cart because I was using the cart for balance. Of course they are so big that the carts can't fit between the racks of clothing, so I walked away a few feet. I was coming back and stopped to look at some shorts below on a shelf. As i stood up I turned left, always my downfall. No literally, this is usually my signature move. I never see it coming either.
So I stood up and turned to my left and behind me, like a half way spin around. I then shift to walk forward, except not all of me follows the shift. I start to walk forward to the cart. My right foot scraps the ground. My left foot tries to jump ahead for balance and as right foot comes forward again it catches on a big industrial size clothes rack. Seriously it was really tall with a picture of Selena Gomez at the top.
I feel my foot catch except my body still is going forward, as my arms fling in front of me I force my right leg out and as it comes forward my shoe is half on & off and goes flying. Where I don't know. AS I'm going down, my arms somehow grab the handle of the shopping cart and my left shoulder and right arm do all they can to avoid hitting the ground. They were successful.
My face is about a foot from the floor & I stay tense in that position. Arms supporting me. No shoe. Leg and arms screaming in pain. Wondering who is all watching. Wondering why this happened, AGAIN. I start to pull up to standing and my son, Paul runs by and says, "I'll get your shoe, Mama!" Always the gentleman. My daughter, Kristina, comes around the corner and said "What was THAT noise?" IO said "It was me." Kristina says, "No, Mom. That loud noise like things were falling and something making a banging noise." I said, "That was ME. I was falling and my shoe is over there somewhere. The cart is all that stopped me from hitting the floor all of the way." Paul "Here's your shoe, Mom." Kristina, "Mom! Are you all right?" Puts on my shoe for me. I said, "No. No I'm not."
I called neuro immediately and left a message with the nurse's voicemail about how I've been feeling and that I fell twice. I got a call the next day. It seemed like I would get some help, but that's only because no one had informed my nurse friend about me and my personal nightmare. She called back & said I can't get steroids before my LP (lumbar puncture). I told her I want to talk to him first, but he can't meet with me until July.
She then gets my tearful story and this is how I can best sum it up. No matter what tests they want to do on me. No matter what the outcome. I should be able to have someone I trust by my side. None of the new people have been with me for this journey. They swooped in and not only want to redo 2008, they want to isolate me and never even inquire about my current health.
I've cried alot today. To many people. My friend nurse listened and bent over backwards to help me. Finally, she has her Head Nurse call me. She listens to my whole story. I say I just don't know why Head neuro shouldn't have to talk to me about the whys of all of this or that he can't tell me why I can't have anyone, I'll take ANYONE that I trust in the practice be by my side. She found a way to squeeze me in tomorrow to talk to him. At least there is that.
This day started out well and even had a great outcome for me in a matter separate from my health. Then within minutes, it all fell apart again. I hate feeling so drained and alone and just a puddle of defeat. This is not me. I keep ending up here though. I'm tripping over my brain all the way to submissiveness. It is so disheartening to feel like you want to fight. That you SHOULD be allowed to fight. Only to be standing there vulnerable with your hands tied behind your back. Brain? You & me are in this together. I'm not giving up, but I need to rest for awhile. Brain tripping is rough on your psyche. ;)
The thing is, even though my family knows I've been on the verge of a flare up since March & my Neuro-Opthomologist knows too, Head Neuro doesn't. He hasn't spoken to me. He hasn't examined me. He only met me once before blowing my life apart. (Stupid, Research girl)
Anyway, to him, I'll be lying. When I fell delivering my newspapers in a full smack on my right side across my customers driveway/lawn, I don't think anyone saw me. I was on the phone with my bluetooth,, so my friend heard me. If anyone did see me, they probably couldn't stop laughing long enough to come and help me.
The second fall was in Kmart. I was shopping with my kids and one of their friends. I had put my cane in the cart because I was using the cart for balance. Of course they are so big that the carts can't fit between the racks of clothing, so I walked away a few feet. I was coming back and stopped to look at some shorts below on a shelf. As i stood up I turned left, always my downfall. No literally, this is usually my signature move. I never see it coming either.
So I stood up and turned to my left and behind me, like a half way spin around. I then shift to walk forward, except not all of me follows the shift. I start to walk forward to the cart. My right foot scraps the ground. My left foot tries to jump ahead for balance and as right foot comes forward again it catches on a big industrial size clothes rack. Seriously it was really tall with a picture of Selena Gomez at the top.
I feel my foot catch except my body still is going forward, as my arms fling in front of me I force my right leg out and as it comes forward my shoe is half on & off and goes flying. Where I don't know. AS I'm going down, my arms somehow grab the handle of the shopping cart and my left shoulder and right arm do all they can to avoid hitting the ground. They were successful.
My face is about a foot from the floor & I stay tense in that position. Arms supporting me. No shoe. Leg and arms screaming in pain. Wondering who is all watching. Wondering why this happened, AGAIN. I start to pull up to standing and my son, Paul runs by and says, "I'll get your shoe, Mama!" Always the gentleman. My daughter, Kristina, comes around the corner and said "What was THAT noise?" IO said "It was me." Kristina says, "No, Mom. That loud noise like things were falling and something making a banging noise." I said, "That was ME. I was falling and my shoe is over there somewhere. The cart is all that stopped me from hitting the floor all of the way." Paul "Here's your shoe, Mom." Kristina, "Mom! Are you all right?" Puts on my shoe for me. I said, "No. No I'm not."
I called neuro immediately and left a message with the nurse's voicemail about how I've been feeling and that I fell twice. I got a call the next day. It seemed like I would get some help, but that's only because no one had informed my nurse friend about me and my personal nightmare. She called back & said I can't get steroids before my LP (lumbar puncture). I told her I want to talk to him first, but he can't meet with me until July.
She then gets my tearful story and this is how I can best sum it up. No matter what tests they want to do on me. No matter what the outcome. I should be able to have someone I trust by my side. None of the new people have been with me for this journey. They swooped in and not only want to redo 2008, they want to isolate me and never even inquire about my current health.
I've cried alot today. To many people. My friend nurse listened and bent over backwards to help me. Finally, she has her Head Nurse call me. She listens to my whole story. I say I just don't know why Head neuro shouldn't have to talk to me about the whys of all of this or that he can't tell me why I can't have anyone, I'll take ANYONE that I trust in the practice be by my side. She found a way to squeeze me in tomorrow to talk to him. At least there is that.
This day started out well and even had a great outcome for me in a matter separate from my health. Then within minutes, it all fell apart again. I hate feeling so drained and alone and just a puddle of defeat. This is not me. I keep ending up here though. I'm tripping over my brain all the way to submissiveness. It is so disheartening to feel like you want to fight. That you SHOULD be allowed to fight. Only to be standing there vulnerable with your hands tied behind your back. Brain? You & me are in this together. I'm not giving up, but I need to rest for awhile. Brain tripping is rough on your psyche. ;)
Wednesday, June 13, 2012
On Second Thought
It occurred to me yesterday, that I'm not sure WHY I'm giving into these tests. I mean I know I've been being pressured and felt as though I had no choice in the matter. The fact is, I do have a choice. It is MY body after all. They may still push me to do them, but I can at least try to push back.
Once in this thought process, I was lead to even more logical choices that had eluded me before. This MRI was during screening for a clinical trial. A clinical trial that is SEPARATE from my documented health care. A clinical trial that is meant to stay PRIVATE and any findings are to remain that way as well. So, if this MRI, that I'd already established before the results were read would need to be repeated, was meant to stay PRIVATE, then there is nothing to question.
Now the Head neuro may argue this, but I have a couple of suggestions for him. Repeat the MRI, if you are concerned. That's the reason you are even questioning my dx. Repeat the MRI. In addition, he is NOT my trusted neuro. He is my neuro of record because his PA-C works under his supervision. At the time thought that was Wendy. Not anymore, you now have a new PA-C and Wendy works under another neuro.
One thing I have learned is I have the power to change the name of my neuro with a simple phone call to my Primary Care Provider (PCP). I can easily switch to the other neuro and now I have Wendy back. I know she is leaving to finish her residency after she passes her boards, but I had already put a plan in place to insure this does not happen again. I want a sit down meeting with myself, Wendy and new neuro going over my history, my dx, my fears and my treatment plan. If we can all be on the same page that SHOULD help avoid this from happening ever again. (But I digress & have gone off track here.)
My other areas of defense are, I have my dx from my Optho-Nuerologist and my original Ms Specialist, Dr. Beall. My records all support my dx of MS. If I have to leave, I can. I make it sound simpler than it will be and it truly is not the option I want to exercise. I would prefer just to switch to Wendy and be done with this nonsense. Now let's see what happens.
I intend to try and get a phone consultation with Wendy. If that doesn't work then I will make an appointment with her for a consultation. I'll take a 10 minute conversation and pay my co-pay for it. One way or another I will talk to her and find a way to make this right. She may still try to convince me to follow through with their testing, but she will need to find some VERY good reasons to make that happen. One way or another I am going to return to the active participant I usually am in my healthcare. The bullying has come to an end Folks. Tammy woke up and found her spine. Game on! Bring your best because I am ready for the fight of my life.
Once in this thought process, I was lead to even more logical choices that had eluded me before. This MRI was during screening for a clinical trial. A clinical trial that is SEPARATE from my documented health care. A clinical trial that is meant to stay PRIVATE and any findings are to remain that way as well. So, if this MRI, that I'd already established before the results were read would need to be repeated, was meant to stay PRIVATE, then there is nothing to question.
Now the Head neuro may argue this, but I have a couple of suggestions for him. Repeat the MRI, if you are concerned. That's the reason you are even questioning my dx. Repeat the MRI. In addition, he is NOT my trusted neuro. He is my neuro of record because his PA-C works under his supervision. At the time thought that was Wendy. Not anymore, you now have a new PA-C and Wendy works under another neuro.
One thing I have learned is I have the power to change the name of my neuro with a simple phone call to my Primary Care Provider (PCP). I can easily switch to the other neuro and now I have Wendy back. I know she is leaving to finish her residency after she passes her boards, but I had already put a plan in place to insure this does not happen again. I want a sit down meeting with myself, Wendy and new neuro going over my history, my dx, my fears and my treatment plan. If we can all be on the same page that SHOULD help avoid this from happening ever again. (But I digress & have gone off track here.)
My other areas of defense are, I have my dx from my Optho-Nuerologist and my original Ms Specialist, Dr. Beall. My records all support my dx of MS. If I have to leave, I can. I make it sound simpler than it will be and it truly is not the option I want to exercise. I would prefer just to switch to Wendy and be done with this nonsense. Now let's see what happens.
I intend to try and get a phone consultation with Wendy. If that doesn't work then I will make an appointment with her for a consultation. I'll take a 10 minute conversation and pay my co-pay for it. One way or another I will talk to her and find a way to make this right. She may still try to convince me to follow through with their testing, but she will need to find some VERY good reasons to make that happen. One way or another I am going to return to the active participant I usually am in my healthcare. The bullying has come to an end Folks. Tammy woke up and found her spine. Game on! Bring your best because I am ready for the fight of my life.
Monday, June 11, 2012
Bumper Brain Cars Imploding on Impact
I am finally ready to talk. I have been living in fear for almost 6 weeks. I was afraid to talk for fear it would influence my outcome. I had been put into victim mode and was burying it deep inside because I had to keep doing what I do until it was time for me to stand up for myself Wednesday was that time.
I had been being screened to enter into a clinical trial when I had a disaster of an MRI. I have had 12 MRIs since I began this journey in early 2008. I don't know why this tech had such a hard time that day, but she did. I was pulled out 4 times to reposition my head. I had taken Valium & came after my newspaper route so that I could sleep thru my claustrophobia. I did this every time, I actually took less this time hoping to see if my fear would be less since this was becoming more normal to me. As normal as being shoved into a tube can get. Well this time the tech was upset that I would drift off. She told me I had to stay awake. I told her that no one disclosed that to me and had I known, I would have prepared to give that a try. I was in this tube for 2 hrs with nothing to look at but the washcloth. Even if I wasn't claustrophobic, I don't know that I could stay awake without suffering from boredom.
Needless to say, she was very frustrated with me and let me know. Often. She said I was jerking and it was messing up her images. I have MS, Lady. Tremors, leg jerks, fatigue...um, kinda part of the program, ya know? I had to have some with and without contrast. I've had the dye injected into my veins before, but this time was different. I had an almost immediate reaction. My mouth and ears felt kind of itchy. My breath felt a little strained. I thought, "Am I having and allergic reaction to the dye?" This was the last part of the MRI and she had said it would only take 4 mins. I thought I would just wait to see if I could make it through the 4 mins before I would mention the weird reaction. I am holding onto this a kind of alert system that lets her know if I need to be taken out. He reminds me of the pump they squeeze on a blood pressure cuff. At this point the itching and the breathing haven't gotten any worse, so I wait. It starts to go away and then she tells me we are done.
When she pulls me out, I tell her about the reaction and tell her why I didn't say anything. She asks if I still feel that way, and I tell her I don't. She helps me off of the table and once I put back on my bra and jewelry, she walks me out. I call the research assistant the next morning and tell her the MRI was a disaster and we may have to repeat it. She explains it may not be necessary as having a certain amount of lesions isn't a big factor. It's more of a baseline. She wants to wait and see if they question it before we repeat it. She calls me a while later and tells me the tech said I never said anything about a reaction. "I most certainly did! I do not mess around with my health and I told her in case something else happened." Maybe that tech doesn't like me?
The research assistant calls me after this and says I have to repeat the ultrasound of my pancreas because there were shadows from the first test. Now I'm not one to freak out, but this girls "poker" voice needs work. She is tell me it's probably nothing, or even "gas", but that they need to make sure. The whole time that she is telling me the standard response the tone of her voice is not calm or reassuring. It is completely ominous and foreboding. When I got off the phone my husband asked if I was ok & I had to say I don't know. I told him what she said & he asked if I was worried. I told him I wasn't gonna dwell on it until I could go back because until I have a real answer there is nothing to do. In the back of my mind I was a little concerned. Turns out I was right on as far as her tone of voice. I'm fine by the way. The shadows were nothing. I was told that research was ready to send me for a CT Scan & ultrasound suggested we first repeat the ultrasound before we overreact. See? Not in my head. Should have been my first clue to go running.
Research calls me a few days later and says ultrasound is fine, but MRI wasn't. She says MRI shows no lesions. (Let me repeat that. "The MRI shows NO lesions".) I say, "I told you it was messed up. So are we gonna repeat it?" She says, "No. There are no lesions, so you aren't approved for the study." I remind her of the disaster MRI and she repeats the no lesions again. I tell her I had an MRI 3 weeks before that and had 3 lesions. "Did they just magically disappear?" (Yes, I did say that) She said, " I don't know anything about that and "head neuro" (that's what we will call him) wants to see you NOT Wendy." I asked "Why?" She didn't answer. WTF?!?!?!
The next day, the shock has worn off and I remember who I am and what I know, so I call Research back. I ask if the MRI the study performed was "MS Protocol" ? She said "Well it's an MS Study so I'm sure they did." I told her that doesn't necessarily mean they did. That a traditional MRI takes it's views of the brain in 6mm(I think mm) slices and an MS Prorocol does it in 3mms. She said she didn't know and I could ask Head neuro. I told her when I was dx 2 years ago i was told since I am so early in my MS that I needed MS protocol to view my lesions. She stumbled and said to wait to see him. Which lead to my next question: Why am I seeing Head neuro? Is it because he is the neuro for the study or for another reason. She stumbles and says he needs to discuss my history and my dx of MS because of the MRI. Damn. I knew it. They are gonna try to give me the stupid "you don't have MS speech.
What I don't get is why little Miss Research is being given so much power? That's fine. I know my history. I know my tests and the results. At least I won't be blindsided by this crap. In my heart I'm thinking I cannot do this again. But I have no choice. I study my history and wait for the appt. The day of my appt, i can hear Head neuro in the hall flipping through my file history for over 10 mins. I can't see through doors, but my suspicions are confirmed when I hear a nurse exclaim his name saying "There Head neuro is!"
He finally comes in and with a new PA. (Wendy was his old one & apparently is under another neuros rounds) He walks in and takes one look at my cane and says "Why do you have a cane?" "In case I lose my balance and to help me walk on bad days." He sits down and begins going thru my file again & starts to tell me how an MRI works and that MS lesions don't go away. He is about to start with the "you don't have MS", crap when I interrupt him.
"I just wondered how the lesions from 3 weeks ago suddenly disappeared from that MRI?" He asked when I had one and I told him. He starts flipping faster, so I go in for my next bite. Also, I was dx with Optic Neuritis last February when I saw my Optho-Neurologist. "Who did you see? Do we have those records?" Yes you do. Flipping again. "When Dr Beall dx me in August 2010, he explained I had to have my MRI done under MS Protocol and I don't know if the study's MRI did that." I explained how that MRI went. More flipping.
I am gonna stop this play by play and cut to the chase. He has stopped saying the you don't have MS speech and switched it to we need to repeat tests to PROVE you have it. I am also told he will be seeing me from now on and be hands on more than before. He orders more tests and tells me to come back. He is hoping to not have to repeat the spinal tap. All I'm thinking is how can I find Wendy to tell her what is happening. I try another location and she is on vacation. I leave a note and ask her to call me. She doesn't. Only because she doesn't know the urgency.
Meanwhile, I have a follow up with my Optho-Neurologist where I almost break down as he is the first member of my personal MS team I am allowed to see. I tell him everything and he tells me that he has documented that I have MS too. He tells me he'll do what he can to help me and try to get in touch with Wendy too. I feel a little better. I repeat the tests like a good girl and bite my tongue because as of now, this neuro controls whether or not I get my prescriptions filled and I am low on all of them. I push down all of my defiance and my panic and fear.
Follow up appt day arrives and my husband asks to go with me, but wants to wait in the waiting room in case I need him. He doesn't want to influence anyone by his presence that would work against me. If I need him to come back, I will send someone for him. As they take me back, we turn a corner and I run smack into Wendy. Wendy!! She happily greets me and I hug her and whisper if she got my card. She clearly doesn't understand what's happening until she stops and asks if I'm on her schedule. Her face shows she suspects I'm not, but doesn't know why. I tell her I was taken off her schedule and they are questioning my dx. She looks upset and tells the tech she wants my chart once my appt is over and tells me she'll definitely call me. I feel some relief as I go into my appt. This is brief.
New PA waltzes in. She has no test results and is alone. I question where the results are she goes to look. I am starting to get so angry. I update husband and tell him to still wait. She comes back and sits down to start telling me the "no MS" speech. I lose it. I finally break down crying. Not just crying though. I start yelling too. I tell her I don't understand why this one MRI negates my previous 11. I tell her that this all because of that Bitch (Research girl) that decides to play God cuz she's bored. I tell her I already went down this path 4 years ago and was dx 2 years ago by an MS Specialist. That they not only don't have my test results, which is why I am here today but the Head neuro can't come in the room. I ask where he is and am told he is at another clinic.
You know those cartoons where the persons head explodes through the top like a volcano? That was what happens next to me. I cannot believe you people are doing this to me. You have put me through the ringer for the past month and ignore all of my precious testing or other notes confirming MS. That not her or Head neuro has even examined me at all. That the last person to even touch me was Wendy and that Head neuro said he would be here from now on. And now he doesn't have the decency to be in the BUILDING. I'm not allowed to see Wendy because I'm supposed to see him, but I can see new PA?!?!? I'm not talking to you anymore. Get out! I want to talk to Wendy. Get her. Now!
They finally got her & by then I was an hysterical mess. She calmed me down and told me she had no idea what they were doing to me. She told me she needed me to be strong cuz now that the wheels were in motion she couldn't stop it. He is Head neuro afterall. She said she wished she could tell me I don't have MS, but I do have it. She said some neuros want everything in a nice neat package and we both know MS isn't like that. If it only took one definitive test than it would be easier on us all, but it is a collaboration of many tests and ruling out other dxs. She told me what to expect and what she would do to help. Eventually I can switch to whomever I want to see, but for now I have to see this path through. It has been so emotionally draining, but knowing Wendy KNOWS what is going on helps me to be strong. I feel less helpless and I can be patient.
I always tell people to be your own advocate. It is very important. No one knows your body like you do. No one knows your history like you do. No one will fight like you can. Trust the people you have around you and trust your own gut. Do what is best for yourself because if you don't it can be disastrous. Look how vigilant I am and I ended up in this mess. *sigh*
So, spinal tap for me on June 22nd and follow up with Head neuro on July 10th. Until then, pray for strength and that I can get off the bumper brain cars these idiots shoved me onto before mine implodes on impact. I'm exhausted. When I broke down in front of the PA for Head neuro, the flood of tears that built up for 5 weeks came pouring out. For almost 2 years before my official dx, I did this torturous ride. When my dx was confirmed it took some of the weight off my shoulders and lessened the pain. No one wishes for or wants to hear "You have MS", but not knowing is far worse than having an answer. Having an answer helps you to move forward with a health plan and hope for your future. I will NEVER give up being my own patient advocate or fighting against MS!! This week though, I think I'll take a quick break & maybe take a nap. Zzzzzzzz...
I had been being screened to enter into a clinical trial when I had a disaster of an MRI. I have had 12 MRIs since I began this journey in early 2008. I don't know why this tech had such a hard time that day, but she did. I was pulled out 4 times to reposition my head. I had taken Valium & came after my newspaper route so that I could sleep thru my claustrophobia. I did this every time, I actually took less this time hoping to see if my fear would be less since this was becoming more normal to me. As normal as being shoved into a tube can get. Well this time the tech was upset that I would drift off. She told me I had to stay awake. I told her that no one disclosed that to me and had I known, I would have prepared to give that a try. I was in this tube for 2 hrs with nothing to look at but the washcloth. Even if I wasn't claustrophobic, I don't know that I could stay awake without suffering from boredom.
Needless to say, she was very frustrated with me and let me know. Often. She said I was jerking and it was messing up her images. I have MS, Lady. Tremors, leg jerks, fatigue...um, kinda part of the program, ya know? I had to have some with and without contrast. I've had the dye injected into my veins before, but this time was different. I had an almost immediate reaction. My mouth and ears felt kind of itchy. My breath felt a little strained. I thought, "Am I having and allergic reaction to the dye?" This was the last part of the MRI and she had said it would only take 4 mins. I thought I would just wait to see if I could make it through the 4 mins before I would mention the weird reaction. I am holding onto this a kind of alert system that lets her know if I need to be taken out. He reminds me of the pump they squeeze on a blood pressure cuff. At this point the itching and the breathing haven't gotten any worse, so I wait. It starts to go away and then she tells me we are done.
When she pulls me out, I tell her about the reaction and tell her why I didn't say anything. She asks if I still feel that way, and I tell her I don't. She helps me off of the table and once I put back on my bra and jewelry, she walks me out. I call the research assistant the next morning and tell her the MRI was a disaster and we may have to repeat it. She explains it may not be necessary as having a certain amount of lesions isn't a big factor. It's more of a baseline. She wants to wait and see if they question it before we repeat it. She calls me a while later and tells me the tech said I never said anything about a reaction. "I most certainly did! I do not mess around with my health and I told her in case something else happened." Maybe that tech doesn't like me?
The research assistant calls me after this and says I have to repeat the ultrasound of my pancreas because there were shadows from the first test. Now I'm not one to freak out, but this girls "poker" voice needs work. She is tell me it's probably nothing, or even "gas", but that they need to make sure. The whole time that she is telling me the standard response the tone of her voice is not calm or reassuring. It is completely ominous and foreboding. When I got off the phone my husband asked if I was ok & I had to say I don't know. I told him what she said & he asked if I was worried. I told him I wasn't gonna dwell on it until I could go back because until I have a real answer there is nothing to do. In the back of my mind I was a little concerned. Turns out I was right on as far as her tone of voice. I'm fine by the way. The shadows were nothing. I was told that research was ready to send me for a CT Scan & ultrasound suggested we first repeat the ultrasound before we overreact. See? Not in my head. Should have been my first clue to go running.
Research calls me a few days later and says ultrasound is fine, but MRI wasn't. She says MRI shows no lesions. (Let me repeat that. "The MRI shows NO lesions".) I say, "I told you it was messed up. So are we gonna repeat it?" She says, "No. There are no lesions, so you aren't approved for the study." I remind her of the disaster MRI and she repeats the no lesions again. I tell her I had an MRI 3 weeks before that and had 3 lesions. "Did they just magically disappear?" (Yes, I did say that) She said, " I don't know anything about that and "head neuro" (that's what we will call him) wants to see you NOT Wendy." I asked "Why?" She didn't answer. WTF?!?!?!
The next day, the shock has worn off and I remember who I am and what I know, so I call Research back. I ask if the MRI the study performed was "MS Protocol" ? She said "Well it's an MS Study so I'm sure they did." I told her that doesn't necessarily mean they did. That a traditional MRI takes it's views of the brain in 6mm(I think mm) slices and an MS Prorocol does it in 3mms. She said she didn't know and I could ask Head neuro. I told her when I was dx 2 years ago i was told since I am so early in my MS that I needed MS protocol to view my lesions. She stumbled and said to wait to see him. Which lead to my next question: Why am I seeing Head neuro? Is it because he is the neuro for the study or for another reason. She stumbles and says he needs to discuss my history and my dx of MS because of the MRI. Damn. I knew it. They are gonna try to give me the stupid "you don't have MS speech.
What I don't get is why little Miss Research is being given so much power? That's fine. I know my history. I know my tests and the results. At least I won't be blindsided by this crap. In my heart I'm thinking I cannot do this again. But I have no choice. I study my history and wait for the appt. The day of my appt, i can hear Head neuro in the hall flipping through my file history for over 10 mins. I can't see through doors, but my suspicions are confirmed when I hear a nurse exclaim his name saying "There Head neuro is!"
He finally comes in and with a new PA. (Wendy was his old one & apparently is under another neuros rounds) He walks in and takes one look at my cane and says "Why do you have a cane?" "In case I lose my balance and to help me walk on bad days." He sits down and begins going thru my file again & starts to tell me how an MRI works and that MS lesions don't go away. He is about to start with the "you don't have MS", crap when I interrupt him.
"I just wondered how the lesions from 3 weeks ago suddenly disappeared from that MRI?" He asked when I had one and I told him. He starts flipping faster, so I go in for my next bite. Also, I was dx with Optic Neuritis last February when I saw my Optho-Neurologist. "Who did you see? Do we have those records?" Yes you do. Flipping again. "When Dr Beall dx me in August 2010, he explained I had to have my MRI done under MS Protocol and I don't know if the study's MRI did that." I explained how that MRI went. More flipping.
I am gonna stop this play by play and cut to the chase. He has stopped saying the you don't have MS speech and switched it to we need to repeat tests to PROVE you have it. I am also told he will be seeing me from now on and be hands on more than before. He orders more tests and tells me to come back. He is hoping to not have to repeat the spinal tap. All I'm thinking is how can I find Wendy to tell her what is happening. I try another location and she is on vacation. I leave a note and ask her to call me. She doesn't. Only because she doesn't know the urgency.
Meanwhile, I have a follow up with my Optho-Neurologist where I almost break down as he is the first member of my personal MS team I am allowed to see. I tell him everything and he tells me that he has documented that I have MS too. He tells me he'll do what he can to help me and try to get in touch with Wendy too. I feel a little better. I repeat the tests like a good girl and bite my tongue because as of now, this neuro controls whether or not I get my prescriptions filled and I am low on all of them. I push down all of my defiance and my panic and fear.
Follow up appt day arrives and my husband asks to go with me, but wants to wait in the waiting room in case I need him. He doesn't want to influence anyone by his presence that would work against me. If I need him to come back, I will send someone for him. As they take me back, we turn a corner and I run smack into Wendy. Wendy!! She happily greets me and I hug her and whisper if she got my card. She clearly doesn't understand what's happening until she stops and asks if I'm on her schedule. Her face shows she suspects I'm not, but doesn't know why. I tell her I was taken off her schedule and they are questioning my dx. She looks upset and tells the tech she wants my chart once my appt is over and tells me she'll definitely call me. I feel some relief as I go into my appt. This is brief.
New PA waltzes in. She has no test results and is alone. I question where the results are she goes to look. I am starting to get so angry. I update husband and tell him to still wait. She comes back and sits down to start telling me the "no MS" speech. I lose it. I finally break down crying. Not just crying though. I start yelling too. I tell her I don't understand why this one MRI negates my previous 11. I tell her that this all because of that Bitch (Research girl) that decides to play God cuz she's bored. I tell her I already went down this path 4 years ago and was dx 2 years ago by an MS Specialist. That they not only don't have my test results, which is why I am here today but the Head neuro can't come in the room. I ask where he is and am told he is at another clinic.
You know those cartoons where the persons head explodes through the top like a volcano? That was what happens next to me. I cannot believe you people are doing this to me. You have put me through the ringer for the past month and ignore all of my precious testing or other notes confirming MS. That not her or Head neuro has even examined me at all. That the last person to even touch me was Wendy and that Head neuro said he would be here from now on. And now he doesn't have the decency to be in the BUILDING. I'm not allowed to see Wendy because I'm supposed to see him, but I can see new PA?!?!? I'm not talking to you anymore. Get out! I want to talk to Wendy. Get her. Now!
They finally got her & by then I was an hysterical mess. She calmed me down and told me she had no idea what they were doing to me. She told me she needed me to be strong cuz now that the wheels were in motion she couldn't stop it. He is Head neuro afterall. She said she wished she could tell me I don't have MS, but I do have it. She said some neuros want everything in a nice neat package and we both know MS isn't like that. If it only took one definitive test than it would be easier on us all, but it is a collaboration of many tests and ruling out other dxs. She told me what to expect and what she would do to help. Eventually I can switch to whomever I want to see, but for now I have to see this path through. It has been so emotionally draining, but knowing Wendy KNOWS what is going on helps me to be strong. I feel less helpless and I can be patient.
I always tell people to be your own advocate. It is very important. No one knows your body like you do. No one knows your history like you do. No one will fight like you can. Trust the people you have around you and trust your own gut. Do what is best for yourself because if you don't it can be disastrous. Look how vigilant I am and I ended up in this mess. *sigh*
So, spinal tap for me on June 22nd and follow up with Head neuro on July 10th. Until then, pray for strength and that I can get off the bumper brain cars these idiots shoved me onto before mine implodes on impact. I'm exhausted. When I broke down in front of the PA for Head neuro, the flood of tears that built up for 5 weeks came pouring out. For almost 2 years before my official dx, I did this torturous ride. When my dx was confirmed it took some of the weight off my shoulders and lessened the pain. No one wishes for or wants to hear "You have MS", but not knowing is far worse than having an answer. Having an answer helps you to move forward with a health plan and hope for your future. I will NEVER give up being my own patient advocate or fighting against MS!! This week though, I think I'll take a quick break & maybe take a nap. Zzzzzzzz...
Tuesday, June 5, 2012
Mind Retreat (No, Really. Go!)
This week marks the last week of school for my little ones. Kristina will finish 4th Grade & Paul will be done with Kindergarten. Wow! They aren't so little anymore. *sigh* But I digress. This is their last week and coincidentally was my first week where I really didn't have anything to do. I have a neuro appointment on Wednesday, but that was it. Or so I thought...
Then the crazy last week at school schedule was presented to me.
*Monday: Kindergarten Field Day for Paul (10-2pm)
*Tuesday: 4th Grade Field Day for Kristina (10-2pm)
*Wednesday: The aforementioned Neuro appt.
*Thursday: Kindergarten Awards for Paul (9:30am)& 4th Grade Awards for Kristina (2pm)
*Friday: Half Day for both.
Really? REALLY?! C'mon! I know. I know. I don't HAVE to go to these events, but I do. I have always gone for Kristina with Paul in tow. This is his first year doing all of these things, so no bailing out now. I've established a pattern. Stupid pattern.
Alright, I don't really hate going or think it's stupid, I just was looking forward to a little extra "Me time" before I have kid & Mommy time 24/7 for the next 12 weeks. I jokingly yelled at them for sucking all of the time out of MY week. I was laughing, but still a little serious.
Oh, and I forgot to mention this one. It's Kristina's BIRTHDAY on Thursday too! 10 years old! It has NOT been that long yet. *sigh* #2.
So where does the "Mind Retreat" come in? So happy you asked me that. This is the first year that I can remember when the Field Day event was not extremely humid or in the 90's. I would have to leave early or keep going to sit down to rest. When I would find a seat it was always at the opposite end of where the kids were competing or I would find one close and their turn to switch to another area would come & THEY would move. That has not happened this year. Yeah!
It was 68 and beautiful for Paul's day. Even had moments of being slightly chilly enough to wish for that Spring coat I left in the car. I was able to watch most of what Paul did and I remembered my camera to take pictures too! So happy that the weather pushed my MS slightly to the side so I could beam proudly on the side.
Another thing in my favor was the fact that Dave & I had to run a few errands before we went to Field Day. Of course, I was moving slow because MS still is lurking and we didn't get there to see the morning events. We arrived at lunchtime & stayed for the afternoon ones. I say "in my favor" because I could honestly say to Kristina this morning, "We will be there after lunch to see you compete just like we were for Paul. Yeah! No rushing through my morning. *happy sigh* #3
As much as I wish I had more "Me time" this week, I am grateful that my lifestyle and situation allows me the freedom to be there for these moments. We don't have a fancy house, or flashy cars. We don't go on long vacations to far away places or have designer names on our clothes. I traded all of those possibilities for the basics and to be here for our families "little moments" that are quickly becoming the most precious ones. I am happy for that blessing in my life.
I have MS. I have Multiple Sclerosis. That is so true and many times it's in my face no matter how much I try to ignore it. MS is just one small part of me. I am so much more than MS. I am a daughter, a sister, a friend, a wife, an aunt, a mother. I love to read, go scrapbooking, cuddle with my kids while we watch movies. I love to have mornings with my husband over coffee and breakfast to talk about our day or our week. I love to have lunch dates and phone dates with my friends. I love to be a shoulder for my loved ones and a confidant to many more. I am a born helper, listener and "Mom". I can be stubborn and controlling when I want things to be perfect, they never are. I can be emotional and strong. I can be bitchy and sweet. I can be a team player or lead the way. I am beautiful inside and out, even with my fuchsia flowery cane at my side. I am Tammy and I have MS, but I am more. So much more.
MS thank you for the brief Mind Retreat during Field Day. I enjoyed it. Feel free to extend it to a vacation. I'm serious. No, Really. Go!
Then the crazy last week at school schedule was presented to me.
*Monday: Kindergarten Field Day for Paul (10-2pm)
*Tuesday: 4th Grade Field Day for Kristina (10-2pm)
*Wednesday: The aforementioned Neuro appt.
*Thursday: Kindergarten Awards for Paul (9:30am)& 4th Grade Awards for Kristina (2pm)
*Friday: Half Day for both.
Really? REALLY?! C'mon! I know. I know. I don't HAVE to go to these events, but I do. I have always gone for Kristina with Paul in tow. This is his first year doing all of these things, so no bailing out now. I've established a pattern. Stupid pattern.
Alright, I don't really hate going or think it's stupid, I just was looking forward to a little extra "Me time" before I have kid & Mommy time 24/7 for the next 12 weeks. I jokingly yelled at them for sucking all of the time out of MY week. I was laughing, but still a little serious.
Oh, and I forgot to mention this one. It's Kristina's BIRTHDAY on Thursday too! 10 years old! It has NOT been that long yet. *sigh* #2.
So where does the "Mind Retreat" come in? So happy you asked me that. This is the first year that I can remember when the Field Day event was not extremely humid or in the 90's. I would have to leave early or keep going to sit down to rest. When I would find a seat it was always at the opposite end of where the kids were competing or I would find one close and their turn to switch to another area would come & THEY would move. That has not happened this year. Yeah!
It was 68 and beautiful for Paul's day. Even had moments of being slightly chilly enough to wish for that Spring coat I left in the car. I was able to watch most of what Paul did and I remembered my camera to take pictures too! So happy that the weather pushed my MS slightly to the side so I could beam proudly on the side.
Another thing in my favor was the fact that Dave & I had to run a few errands before we went to Field Day. Of course, I was moving slow because MS still is lurking and we didn't get there to see the morning events. We arrived at lunchtime & stayed for the afternoon ones. I say "in my favor" because I could honestly say to Kristina this morning, "We will be there after lunch to see you compete just like we were for Paul. Yeah! No rushing through my morning. *happy sigh* #3
As much as I wish I had more "Me time" this week, I am grateful that my lifestyle and situation allows me the freedom to be there for these moments. We don't have a fancy house, or flashy cars. We don't go on long vacations to far away places or have designer names on our clothes. I traded all of those possibilities for the basics and to be here for our families "little moments" that are quickly becoming the most precious ones. I am happy for that blessing in my life.
I have MS. I have Multiple Sclerosis. That is so true and many times it's in my face no matter how much I try to ignore it. MS is just one small part of me. I am so much more than MS. I am a daughter, a sister, a friend, a wife, an aunt, a mother. I love to read, go scrapbooking, cuddle with my kids while we watch movies. I love to have mornings with my husband over coffee and breakfast to talk about our day or our week. I love to have lunch dates and phone dates with my friends. I love to be a shoulder for my loved ones and a confidant to many more. I am a born helper, listener and "Mom". I can be stubborn and controlling when I want things to be perfect, they never are. I can be emotional and strong. I can be bitchy and sweet. I can be a team player or lead the way. I am beautiful inside and out, even with my fuchsia flowery cane at my side. I am Tammy and I have MS, but I am more. So much more.
MS thank you for the brief Mind Retreat during Field Day. I enjoyed it. Feel free to extend it to a vacation. I'm serious. No, Really. Go!
Thursday, May 31, 2012
The Three Ring Circus(Or Help, Me I Wanna Get Off This Ride)
Here I am again
Jumping through their hoops.
It wasn't fun the first time,
Shocking loop-de-loops.
Their little acrobat.
Floating through the sky.
Doing this familiar dance.
My brave face helps me lie.
I am up. I am down.
I am twisted all around.
I cannot keep going up,
When they keep pulling down.
"Prove yourself again"
"Our info proves you wrong."
I have all the proof I need.
My data is a mile long!
You pause as I speak.
I've thrown you off your game.
It's not enough, I fear,
To forget why you came.
I tripped you up, for a moment.
You stumble on your pride.
It doesn't last long enough,
You have clout on your side.
"Repeat this test."
"Now let's do another."
"Shock her nerves".
"Let's make her struggle."
"Pee in a cup."
"Give us blood."
"We'll beat you down,
Drag you through the mud."
"Dance like this."
"Skip like that."
"Don't talk back
Or you'll regret it."
"Do you want your meds?"
"Do you want your scripts?"
"Then do what we say."
"Perform all of our tricks."
"We have you now."
"Right where we want you."
"You should be confused."
"This isn't even about you."
"Don't you slip."
"Not even a little bit."
"You'll go back to the start."
"Do you remember that part?"
"Back into limbo."
"Where you felt so defeated."
"When you were so alone."
"Broken & beaten."
I thought I was passed this.
That I could move on.
But someone has decided
To try to prove me wrong.
I'm not afraid of her.
But I must play their game.
As much as I hate it.
It all ends the same.
If I rock the boat,
I'll give them more power.
I can't have that,
So, for now I'll cower.
Please, God, send me someone
To help me rise above.
Pull me up from the ground.
Fill my heart back with love.
Make me strong and brave
Help me pass through their trials
I need to be myself again
I need to find my smile.
Feeling powerless equals helpless
And that is far from who I am.
Let this Three Ring Circus finish
So I can live my life again.
Tammy Malkowski 5/31/12
Jumping through their hoops.
It wasn't fun the first time,
Shocking loop-de-loops.
Their little acrobat.
Floating through the sky.
Doing this familiar dance.
My brave face helps me lie.
I am up. I am down.
I am twisted all around.
I cannot keep going up,
When they keep pulling down.
"Prove yourself again"
"Our info proves you wrong."
I have all the proof I need.
My data is a mile long!
You pause as I speak.
I've thrown you off your game.
It's not enough, I fear,
To forget why you came.
I tripped you up, for a moment.
You stumble on your pride.
It doesn't last long enough,
You have clout on your side.
"Repeat this test."
"Now let's do another."
"Shock her nerves".
"Let's make her struggle."
"Pee in a cup."
"Give us blood."
"We'll beat you down,
Drag you through the mud."
"Dance like this."
"Skip like that."
"Don't talk back
Or you'll regret it."
"Do you want your meds?"
"Do you want your scripts?"
"Then do what we say."
"Perform all of our tricks."
"We have you now."
"Right where we want you."
"You should be confused."
"This isn't even about you."
"Don't you slip."
"Not even a little bit."
"You'll go back to the start."
"Do you remember that part?"
"Back into limbo."
"Where you felt so defeated."
"When you were so alone."
"Broken & beaten."
I thought I was passed this.
That I could move on.
But someone has decided
To try to prove me wrong.
I'm not afraid of her.
But I must play their game.
As much as I hate it.
It all ends the same.
If I rock the boat,
I'll give them more power.
I can't have that,
So, for now I'll cower.
Please, God, send me someone
To help me rise above.
Pull me up from the ground.
Fill my heart back with love.
Make me strong and brave
Help me pass through their trials
I need to be myself again
I need to find my smile.
Feeling powerless equals helpless
And that is far from who I am.
Let this Three Ring Circus finish
So I can live my life again.
Tammy Malkowski 5/31/12
Monday, May 21, 2012
Stupid Summer Heat
Not my most clever title, that's for sure. Not happy with this already hot & humid weather in May, but I am not surprised. I told everyone I could that there would be a price to pay for this mile/non-existent Winter. I know the heat will be bad this year, so I will be online much more since I'll be a virtual prisoner in my own home. Hey. I just got that. "Virtual prisoner" trapped "online". Get it. Look if I have to explain these things to you then it'll be a long Summer. ;)
The bugs will be bad too. No ice and snow to kill off half of them means bug bites galore. And the fish flies. Oh, my Michiganders on the Eastside. The fishflies will rival the Summer of 1989, I am quite sure. This I do not look forward to either. As I write this I have a pack of ice on my lap. Yep. You read right. Is it helping? Not really, but I'm making the effort.
I have to relax and focus on my book writing and re-direct my "Year of Tammy" back to, well, Tammy. I guess this will force that issue as well. In a few days, I will make my bi-annual trip up to Chesaning, Michigan to Cropping Daze Retreat to scrapbook and be pampered with gourmet treats and time with my mom. This will push my Summer into the right direction. Thankfully it has one of the essentials I now require with MS. AIR-CONDITIONING!!! *sigh* I hate the air conditioning. I prefer open windows and a breeze, but MS is in charge of this one. Stupid Summer Heat.
The bugs will be bad too. No ice and snow to kill off half of them means bug bites galore. And the fish flies. Oh, my Michiganders on the Eastside. The fishflies will rival the Summer of 1989, I am quite sure. This I do not look forward to either. As I write this I have a pack of ice on my lap. Yep. You read right. Is it helping? Not really, but I'm making the effort.
I have to relax and focus on my book writing and re-direct my "Year of Tammy" back to, well, Tammy. I guess this will force that issue as well. In a few days, I will make my bi-annual trip up to Chesaning, Michigan to Cropping Daze Retreat to scrapbook and be pampered with gourmet treats and time with my mom. This will push my Summer into the right direction. Thankfully it has one of the essentials I now require with MS. AIR-CONDITIONING!!! *sigh* I hate the air conditioning. I prefer open windows and a breeze, but MS is in charge of this one. Stupid Summer Heat.
Tuesday, May 15, 2012
My Thoughts Are Racing in My Mind
Go! Go! Gooooooo!!!! This is me the past 2 weeks. Some days I am completely on autopilot. I have to "fake it til I make it" and I am trying hard. The only problem with all of this is I have MS. No, really, I do. You do know what this blog is about, right? (Well, I still have my sense of humor.) Yes, I am funny. I thought it was funny. Maybe I'm crazy instead of funny? Hmmmm, ...oh well. There are worse things to be in life.
Back to my thoughtful race. I have this "Family Game Night" fundraiser that I created to support the NMSS. It is in 3 days. Wait. 3 days? THREE days? THREE DAYS!!!!! Argh!!! ok, breathe. It will all be okay. I know in my heart it will work out. I have to have faith. This year will be my "learning experience". I am keeping track of what I have done this year that I don't want to repeat and things I will change or leave the same.
It's the not knowing that is getting to me. Will people come? Will kids come? Will they have fun? Will too many people come? What if we run out of food or what if we have too much left over? Will I embarrass myself? Will I do the NMSS proud? I hope so. I am trying. I really am.
Nap time doesn't really fit into my schedule when there is so much to prepare. I'm not behind. I'm actually on schedule with what I need to do. It's just that B*tch, MS keeps coming around and trying to make my legs buckle. She wants my hands to shake and my words to slur. She wants me exhausted & in bed. I keep telling her "no.", but I can only hold her off for so long. Clearly, she isn't taking the hint that this is not the time to mess with me.
Truly, though, what the heck can I do to her. She IS Multiple Sclerosis & my only method of attack right now is to ignore her. I don't want steroids, but that usually puts her in her place. My MS Yoga can usually hold her off a little longer. Drinking my water does too. There are some things I can do, but finding the time right now proves challenging.
I know I need to slow down & I am trying. I don't want to leave for my getaway to Cropping Daze Scrapbook Retreat and be exhausted. I want to enjoy my time there. So I am asking for more help. I am getting my butt in bed earlier this week. I am trying to make my health a priority. If I don't, who will? No one knows your body better than yourself. So while your thoughts go racing through your mind, add the one about putting your health first, or at least put it in the top 5 on your priorities list. Besides, no one will win the race in your mind. It's on a continuous loop, so make a pit-stop & relax!
Back to my thoughtful race. I have this "Family Game Night" fundraiser that I created to support the NMSS. It is in 3 days. Wait. 3 days? THREE days? THREE DAYS!!!!! Argh!!! ok, breathe. It will all be okay. I know in my heart it will work out. I have to have faith. This year will be my "learning experience". I am keeping track of what I have done this year that I don't want to repeat and things I will change or leave the same.
It's the not knowing that is getting to me. Will people come? Will kids come? Will they have fun? Will too many people come? What if we run out of food or what if we have too much left over? Will I embarrass myself? Will I do the NMSS proud? I hope so. I am trying. I really am.
Nap time doesn't really fit into my schedule when there is so much to prepare. I'm not behind. I'm actually on schedule with what I need to do. It's just that B*tch, MS keeps coming around and trying to make my legs buckle. She wants my hands to shake and my words to slur. She wants me exhausted & in bed. I keep telling her "no.", but I can only hold her off for so long. Clearly, she isn't taking the hint that this is not the time to mess with me.
Truly, though, what the heck can I do to her. She IS Multiple Sclerosis & my only method of attack right now is to ignore her. I don't want steroids, but that usually puts her in her place. My MS Yoga can usually hold her off a little longer. Drinking my water does too. There are some things I can do, but finding the time right now proves challenging.
I know I need to slow down & I am trying. I don't want to leave for my getaway to Cropping Daze Scrapbook Retreat and be exhausted. I want to enjoy my time there. So I am asking for more help. I am getting my butt in bed earlier this week. I am trying to make my health a priority. If I don't, who will? No one knows your body better than yourself. So while your thoughts go racing through your mind, add the one about putting your health first, or at least put it in the top 5 on your priorities list. Besides, no one will win the race in your mind. It's on a continuous loop, so make a pit-stop & relax!
Friday, May 11, 2012
Sleep Walking
My brain is on overload with all of the things I have had to do for myself, my family, my kids and their school and for the fundraiser for the NMSS. I am so tired, so tired, that I believe I am sleepwalking through life right now. It's not good to be this tired. I want to slow down, but at this point so many people are depending on me and if I don't do what I need to do it will all fall apart.
I have people who have volunteered to help me, and I am grateful, but there are so many more places I need help and I don't want to put anyone else out. They have their own lives too. My husband said today that if I end up sick or worse it will be "your own fault". I said "Don't say that. It is NOT my own fault. I am asking for help & people are giving it, but there is so much more going on. I may have planned the things I took on, but the kids deadlines and school events were not cleared through me. I didn't plan for all of these things to converge within a 3 week period. People are helping, but I need so much more than anyone can give."
He took this as he isn't doing enough. This is so far from the truth because he is helping and he does do what he thinks he should. It isn't that anyone is NOT doing enough. It isn't anyone's "fault". Just like it isn't "my own fault". I'm not asking for sympathy, but don't blame me either. I am telling people, I'm overwhelmed. I'm telling people my MS is starting to flare. I can feel it. I can't stop it. I can try to sleep and try to slow down, but the responsibilities are still there.
I'm learning with this fundraiser what to do differently next time. I know what I need to leave til the end and what should be secured months in advance. I am learning that I need to firm up commitments sooner and ask more people to volunteer for the actual event. It is a great thing to help out a cause like the National MS Society because I feel like I need to give back and help others like myself. The only true problem is that MS doesn't take note of your responsibilities. MS doesn't care what time it is or who needs you right now. MS doesn't care that you can't sleep in or take a nap. MS takes over when it wants and how it wants. It doesn't care that you are sleepwalking through your days. It just takes over and too bad for you.
On that note, I need to go to sleep because as of right now, I'm giving in to MS for the night. Tonight's Score: MS 1 ME 0, but tomorrow is another day, Scarlett and I don't give up that easily.
I have people who have volunteered to help me, and I am grateful, but there are so many more places I need help and I don't want to put anyone else out. They have their own lives too. My husband said today that if I end up sick or worse it will be "your own fault". I said "Don't say that. It is NOT my own fault. I am asking for help & people are giving it, but there is so much more going on. I may have planned the things I took on, but the kids deadlines and school events were not cleared through me. I didn't plan for all of these things to converge within a 3 week period. People are helping, but I need so much more than anyone can give."
He took this as he isn't doing enough. This is so far from the truth because he is helping and he does do what he thinks he should. It isn't that anyone is NOT doing enough. It isn't anyone's "fault". Just like it isn't "my own fault". I'm not asking for sympathy, but don't blame me either. I am telling people, I'm overwhelmed. I'm telling people my MS is starting to flare. I can feel it. I can't stop it. I can try to sleep and try to slow down, but the responsibilities are still there.
I'm learning with this fundraiser what to do differently next time. I know what I need to leave til the end and what should be secured months in advance. I am learning that I need to firm up commitments sooner and ask more people to volunteer for the actual event. It is a great thing to help out a cause like the National MS Society because I feel like I need to give back and help others like myself. The only true problem is that MS doesn't take note of your responsibilities. MS doesn't care what time it is or who needs you right now. MS doesn't care that you can't sleep in or take a nap. MS takes over when it wants and how it wants. It doesn't care that you are sleepwalking through your days. It just takes over and too bad for you.
On that note, I need to go to sleep because as of right now, I'm giving in to MS for the night. Tonight's Score: MS 1 ME 0, but tomorrow is another day, Scarlett and I don't give up that easily.
Wednesday, May 9, 2012
Control Your Own Mind
Hello Everyone,
Today I would like to discuss being your own advocate. In life this is important, but when it comes to your health it is even more crucial. I hear people complain that their doctor doesn't listen to them or that the doctor is too busy to talk to them.
I'm hear to point out that not only is that ridiculous, but you should never allow yourself to be in a position where you are at a disadvantage with your doctor. If you don't like the doctor you can always switch, but most people find that a hassle. However, if you choose to stay with this doctor, you need to start speaking up.
Remember this is YOUR body & YOUR mind, and no one will ever know your body like you do. Also, you are PAYING this doctor to treat you. The doctor's job is to help you stay healthy and treating you physical is only one part. Treating you with respect is also a requirement. It shouldn't even be a question.
Easier said than done I can hear many shouting at me. I know you're in the paper gown and it's hard to stand up for yourself when you feel so vulnerable. Even if you aren't in the paper gown, when the doctor walks in you immediately feel like he/she knows more than you so you'll just do what is said. Wrong! Yes, doctors did go to school for a long time to learn all about medicine. I believe that is wonderful and we are very grateful to have them learning all that we don't know, but there is more than that to consider.
Medicine is always changing and doctors are always learning as a result. Not all of them have the time to keep up on research or new developments. They are not infallible and it is important that we remember that. Doctors make mistakes, just like the rest of us. We are all human. Doctors also may not realize how they are treating their patients because their days are so overbooked they can become more focused on their schedule than spending more time with their patient. I am seeing a change of this more & more as doctors are focusing more on "patient care".
If you don't communicate with your doctor than they will be operating without all of the facts at their disposal. Arm yourself with a list of questions. I keep a notepad on my counter the week of an appointment & every time I walk by it I can add a new question. I forget once he comes in an starts asking his own or telling me what will happen next. If I have the paper than I can look at the end & tell him I had some more questions for him.
Also, write down any new research, theories or medicine you are interested in learning more about or even trying. If your doctor is not willing to listen to you and you have tried all you can think of to break through that. It's time to move on.
If you don't take control of your own mind and body then you can only blame yourself. Our health truly is the one thing that keeps us going to be able to participate in this thing we call life. Don't be passive in your own health care. Grab hold and take your control back!
Today I would like to discuss being your own advocate. In life this is important, but when it comes to your health it is even more crucial. I hear people complain that their doctor doesn't listen to them or that the doctor is too busy to talk to them.
I'm hear to point out that not only is that ridiculous, but you should never allow yourself to be in a position where you are at a disadvantage with your doctor. If you don't like the doctor you can always switch, but most people find that a hassle. However, if you choose to stay with this doctor, you need to start speaking up.
Remember this is YOUR body & YOUR mind, and no one will ever know your body like you do. Also, you are PAYING this doctor to treat you. The doctor's job is to help you stay healthy and treating you physical is only one part. Treating you with respect is also a requirement. It shouldn't even be a question.
Easier said than done I can hear many shouting at me. I know you're in the paper gown and it's hard to stand up for yourself when you feel so vulnerable. Even if you aren't in the paper gown, when the doctor walks in you immediately feel like he/she knows more than you so you'll just do what is said. Wrong! Yes, doctors did go to school for a long time to learn all about medicine. I believe that is wonderful and we are very grateful to have them learning all that we don't know, but there is more than that to consider.
Medicine is always changing and doctors are always learning as a result. Not all of them have the time to keep up on research or new developments. They are not infallible and it is important that we remember that. Doctors make mistakes, just like the rest of us. We are all human. Doctors also may not realize how they are treating their patients because their days are so overbooked they can become more focused on their schedule than spending more time with their patient. I am seeing a change of this more & more as doctors are focusing more on "patient care".
If you don't communicate with your doctor than they will be operating without all of the facts at their disposal. Arm yourself with a list of questions. I keep a notepad on my counter the week of an appointment & every time I walk by it I can add a new question. I forget once he comes in an starts asking his own or telling me what will happen next. If I have the paper than I can look at the end & tell him I had some more questions for him.
Also, write down any new research, theories or medicine you are interested in learning more about or even trying. If your doctor is not willing to listen to you and you have tried all you can think of to break through that. It's time to move on.
If you don't take control of your own mind and body then you can only blame yourself. Our health truly is the one thing that keeps us going to be able to participate in this thing we call life. Don't be passive in your own health care. Grab hold and take your control back!
Friday, May 4, 2012
Walking with Purpose
Putting one foot in front of another and trying to acquire prizes & donations for the Family Game Night. More generosity from Anne Poppe fro Tastefully Simple, from QDoba in Roseville, and FedEx Office in Roseville too. Happy so many are willing to help. Sorry that I have so much energy and drive in the morning and crash in the afternoon. I made some more progress with the schools so we can try to get more kids there. Fingers crossed as I keep walking with purpose. Now a little nap before dinner. Shhhhh, don't tell anyone. Maybe they won't notice....
Thursday, May 3, 2012
Brainstorming for Fun!
Hello Everyone,
Today is a new day and we have new goals! Now my focus is shifting onto the National MS Society Fundraiser that I have created. I am hosting a "Family Game Night" to support the NMSS through our team The Brain Farts. This will be my first fundraiser that I was completely in charge of, and I am a little nervous. At night I reach terrified. I wonder if anyone will come despite all of my advertising efforts. I figure this will be a complete bust or a huge success. You know me, plan for the worst and hope for the best.
I came up with this idea because I enjoyed the "Movie Nights" hosted at our elementary school. Families would come to hang out with each other. Originally I had decided to do that, but had trouble finding a venue. Also with worrying about technical difficulties, I decided to think of something else.
As I was brainstorming, I remembered the campaign by Hasbro to bring back "family game night". I always loved this idea because some of my best memories are from playing games with my mom & my grandma and all of my sisters. It was always fun and it slowed you down enough to put your focus into a game that allows you to interact with someone and have fun. And this time it's live & in person! So "Family Game Night" as a fundraiser was born.
We want to have simple games so families and kids can move between games & try new ones. Each game will have someone there to help with rules, set up and to referee, if necessary. Plus dinner with pizza, chips & a drink for $3! We'll have a Bake Sale, Silent Auction and 50/50 Raffle. All children will receive a gift bag to take home filled with some surprises and coupons from vendors who have sponsored us. For example, The Dairy Queen at 10 1/2 & Harper in St. Clair Shores, MI donated coupons for the kids for a free ice cream cone. The 7-11 on Masonic & Harper will be donating free Slurpee coupons. We have Ye Old Toy Shop on Harper between 12 & 13 Mile Rds donating toys for the silent auction. Secret Treasures Resale and Polka Dot Boutique on Harper between 10 & 11 Mile Rds is also putting a fun basket together.)
That's just the beginning! Come join us to find out more.
If you'd like to come to play or to volunteer, please let me know. If you'd like to donate money or prizes to help, or food or drink donations, my email is kristinas_mommy@yahoo.com. I believe if we can get kids there to play, they will learn more about what MS is and have fun!!
With every new idea,I feel more alive and at my purpose for having MS. Advocating & educating people is a journey I feel passionate about. Next year I have many ideas to try, but I think I will space them out a bit in 2013. ;)
Monday, April 30, 2012
The Brain Farts Team Walked...
On Saturday, April 28, 2012, The Brain Farts Team & I walked in Bloomfield Hills, MI to support the National MS Society. It was cold. It was rather chilly. It was 43 degrees. It did NOT rain, so I will take the cold. Once we started moving it was fine. It was colder standing around waiting for the NMSS to begin the opening ceremonies.
Before we arrived at the walk site, I received an email asking our team to lead the walk because our team had the largest amount of registered teammates. Go Brain Farts! As if that wasn't enough, I was asked to cut the ribbon to begin the walk. Wow! Me? Really? Thank you. Thank you so much. I felt pretty honored.
We had 29 registered walkers for our team. Not everyone was able to walk that day, but I believe there were 25 of us Brain Fartees walking. Now the route they laid out was a little up and down, like, hmmmm, uh. Oh! Hills! Wait. Bloomfield Hills. Bloomfield HILLS! I get it! Lol ;) It was very pretty and the houses were an incredible site to see. With the exceptional random car that decided NOT to slow down after we were crossing in the road. We did look both ways & no one was coming. Within the hills were many curves and blind spots. What can you do? Not everyone has a cheery disposition.
The volunteers were amazing! They were helpful from beginning to end. I only made it half way again, much in part because of my friend, Kelly, who joined our walk. I had to walk next to her and catch up. I had to ask her "Wheelchair Hotie" booty to slow down. I'm not on wheels here, Girl. Let me keep up! So, I did make it to the halfway point. There was a vehicle that had stopped there for walkers who needed a ride back to the finish line. Thank you & a big shout out to FORD MOTOR COMPANY for donating the vehicles for the NMSS walk!!!! Apparently they do this for all of the walks thru out Michigan. It was a very comfortable ride in that brand new Lincoln. Paul & I rode in style, my friends!
The rest of my team made it the whole way and I learned on Sunday evening that not only did we meet our new goal of $4,000, but we exceeded it! Last check was $4,424 and that does not include the money any of the team members turned in at the walk site. The Marchetti brothers raised a huge amount of money for the NMSS and our team. Close to $1,200 combined. Wow! And we still have a few fundraisers coming up. Our teammate, Jaime Peralta, is raising money thru her work with donations for a "Casual Friday" in May. My family is hosting a "Family Game Night" Fundraiser on Friday, May 18, 2012 from 5-8pm at St. Athanasius Church in Roseville Michigan. All are welcome to attend! More to follow on that one. My point is we may make $5,000!
It was a wonderful day for our team and just as the other 2 walks we've joined hold their own memories, this one will have many of it's own. I cherish them all! Thank you so much to all of my teammates, my supporters, who donate from their wallets AND their hearts, and all who love me from near and far. My heart swells with pride and love! Thanks for another successful walk!!!
Before we arrived at the walk site, I received an email asking our team to lead the walk because our team had the largest amount of registered teammates. Go Brain Farts! As if that wasn't enough, I was asked to cut the ribbon to begin the walk. Wow! Me? Really? Thank you. Thank you so much. I felt pretty honored.
We had 29 registered walkers for our team. Not everyone was able to walk that day, but I believe there were 25 of us Brain Fartees walking. Now the route they laid out was a little up and down, like, hmmmm, uh. Oh! Hills! Wait. Bloomfield Hills. Bloomfield HILLS! I get it! Lol ;) It was very pretty and the houses were an incredible site to see. With the exceptional random car that decided NOT to slow down after we were crossing in the road. We did look both ways & no one was coming. Within the hills were many curves and blind spots. What can you do? Not everyone has a cheery disposition.
The volunteers were amazing! They were helpful from beginning to end. I only made it half way again, much in part because of my friend, Kelly, who joined our walk. I had to walk next to her and catch up. I had to ask her "Wheelchair Hotie" booty to slow down. I'm not on wheels here, Girl. Let me keep up! So, I did make it to the halfway point. There was a vehicle that had stopped there for walkers who needed a ride back to the finish line. Thank you & a big shout out to FORD MOTOR COMPANY for donating the vehicles for the NMSS walk!!!! Apparently they do this for all of the walks thru out Michigan. It was a very comfortable ride in that brand new Lincoln. Paul & I rode in style, my friends!
The rest of my team made it the whole way and I learned on Sunday evening that not only did we meet our new goal of $4,000, but we exceeded it! Last check was $4,424 and that does not include the money any of the team members turned in at the walk site. The Marchetti brothers raised a huge amount of money for the NMSS and our team. Close to $1,200 combined. Wow! And we still have a few fundraisers coming up. Our teammate, Jaime Peralta, is raising money thru her work with donations for a "Casual Friday" in May. My family is hosting a "Family Game Night" Fundraiser on Friday, May 18, 2012 from 5-8pm at St. Athanasius Church in Roseville Michigan. All are welcome to attend! More to follow on that one. My point is we may make $5,000!
It was a wonderful day for our team and just as the other 2 walks we've joined hold their own memories, this one will have many of it's own. I cherish them all! Thank you so much to all of my teammates, my supporters, who donate from their wallets AND their hearts, and all who love me from near and far. My heart swells with pride and love! Thanks for another successful walk!!!
Thought Provoking News
Hello All,
I was featured in our local newspaper, The Macomb Daily, this past Saturday, April 28, 2012. I was interviewed about raising awareness for MS & the NMSS, as well as how I cope with it.
Here is the link to copy and paste if you'd like to read the article and see my family in their "online" picture version. The first 2 lines of the article were cut off. (Next line to be read with sarcasm. *hint* *hint*) Thus proving how much better it is to get your news online rather than the actual "paper" version you hold in your hand. But, hey, I digress.
http://www.macombdaily.com/article/20120427/LIFE11/120429565/mom-with-ms-gears-up-for-saturday-fundraiser
I would like to copy and paste the email I actually sent to the writer for background on myself. This way you can be "privilege" to all I said. Mostly, because I want to share, not because they didn't print it. We all know I can be a "little" wordy. (You were thinking it. Admit it.)
Actual email:
Here is a little more background on myself. Use it if you like or scrap it if you don't. No worries. :)
Background:
My name is Tammy Malkowski, before I met my wonderful husband, I was Tammy Caramagno. I was born in 1971 and am the oldest of 5 girls. I have 4 sisters & 4 step-sisters. I grew up in Harper Woods until I was 10 years old when we moved to Grosse Pointe Farms. I graduated from Grosse Pointe South High School in 1990.
I went to Central Michigan University and graduated in 1995 with a B.A.A. in Interior Design.
My parents have a lot to do with the woman I am today. My dad taught me to always look at a problem from all angles so you're prepared for anything. He loves to play devil's advocate. My mom has taught me be myself and show the people you love how much you care. I have always been that person who stands up for the "little guy" or for some "injustice". Many times to my own detriment. I speak my mind, I love with all my heart and I am always ready to lend a helping hand.
I have been married to my husband, David, since 1997 and we have a 9 year old daughter, Kristina & a 6 year old son, Paul. We live in St. Clair Shores now. I have always wanted to be a stay-at-home mom, so when Kristina was 18 months old I became a newspaper carrier with the Macomb Daily in 2003. It allows me to help with the bills and be at home for my kids.
In 2008, I began having symptoms that eventually lead to my diagnosis of Multiple Sclerosis. I had double vision in one eye, I would lose my balance and fall, and my hands would tremble. Some things seemed so random, but when I would become exhausted after walking to the top of the stairs or just by taking a shower, I knew something was wrong. Once I was diagnosed with MS, my "Devil's Advocate" side of my mind played out all of my possible futures. My positive side kicked in and found ways to laugh at my symptoms. If I fell down in the living room & look for loose change under the sofa. I believe in planning for the worst & hoping for the best. Just because I have MS doesn't mean my life is over.
I can control each morning how I face my day. I choose to smile as much as I can and enjoy every moment. I may have to plan differently then I used to do. Extreme heat makes my legs weak & it's hard to walk. Extreme cold or high winds cause horrible pain throughout my body. I won't be bike riding anytime soon with my kids, but we can go for a walk, or read books together or just cuddle. I choose how I will be a parent. I refuse to let MS choose for me.
There are a few questions people ask me often.
#1) How can you still deliver the newspaper everyday?
I deliver the Macomb Daily 365 days a year & about 20-30 of those days I really struggle and wonder what I am doing. When I remember how few that is compared to the 365, I do my best to keep going. I can move the best in the morning & it keeps me limber.
#2) How do your children feel about you having MS?
I know they worry, but the one key thing I try to remember is how I felt when I was a child. The moments children remember the most aren't the expensive gifts you buy them or the places you take them. Children want to know their parents love them and to pay attention to them. I can do that with my heart, no matter what Ms does to my body.
#3) Why do you think you have MS?
I am a firm believer in everything happens for a reason. We may not always understand why, but we all have a role in the world. I am starting to believe I am meant to be an advocate for MS. I think I can help raise awareness.
I would love for people to realize that MS is different for every person who has it. Some may be wheelchair bound. I use a can for most of my day. Others may never have walking problems. Some people can rise above their pain and be positive like myself. While others will struggle to come to terms with it. There is no one face for MS or one way it looks, but it is still very real. I just choose to wear my MS with a smile on my face & hope in my heart.
Blog:
My blog about my journey with Multiple Sclerosis(MS) began as a way to update family & friends about my health. It has grown into a avenue about my health, MS, poems and stories and life in general.
Here is the link to my blog, "Pick Tammy's Brain":
http://www.picktammysbrain.blogspot.com/
Walk MS Page:
Here is the link to my MS Walk Page & the Brain Farts Team:
http://main.nationalmssociety.org/goto/tammymalkowski12
How Facebook helped me find my voice:
After being diagnosed with Multiple Sclerosis, I went online to search for other people who had MS too. I found the National MS Society's Facebook page. I quickly made many friends and found a place where people understood how I felt & who I could ask questions about my hopes, fears, medications & my future. I was able to offer support in return. After a couple of months, I kept hearing many of my friends with MS becoming frustrated when their friends & family would say, "But you look so good!" People meant well, but also assumed if you look good, you MUST feel good. I decided to put their words into a poem, and wrote "Seeing is NOT Believing". After I posted it, so many people were so grateful to me. It was very humbling because I felt like it was such a small gesture for them. Since they liked it so much, I have kept writing more poetry about it and am up to 15 poems and counting. I hope to publish a book of them to help raise more money for the NMSS.
This is still my most popular poem with people who have MS.
"Seeing is NOT Believing" Poem
Don’t believe because I smile
That the numbness went away.
Don’t believe because I laugh
That I’m not in pain today.
Don’t believe because my hair is done
That anything has changed.
Don’t believe my body won’t react
To the sun, the snow, the rain.
Don’t believe because I walk
That I’m not prepared to fall.
Don’t believe that “looking good”
Changes my health at all.
Don’t believe because I hug
That it doesn’t make me wince.
Don’t believe because I “look good”
That MS does not exist.
Don’t believe I will give up
The person I am inside.
Don’t believe that MS is gone
Even when it hides.
By Tammy Malkowski
1/30/2010
That concludes todays thought provoking news. ;)
I was featured in our local newspaper, The Macomb Daily, this past Saturday, April 28, 2012. I was interviewed about raising awareness for MS & the NMSS, as well as how I cope with it.
Here is the link to copy and paste if you'd like to read the article and see my family in their "online" picture version. The first 2 lines of the article were cut off. (Next line to be read with sarcasm. *hint* *hint*) Thus proving how much better it is to get your news online rather than the actual "paper" version you hold in your hand. But, hey, I digress.
http://www.macombdaily.com/article/20120427/LIFE11/120429565/mom-with-ms-gears-up-for-saturday-fundraiser
I would like to copy and paste the email I actually sent to the writer for background on myself. This way you can be "privilege" to all I said. Mostly, because I want to share, not because they didn't print it. We all know I can be a "little" wordy. (You were thinking it. Admit it.)
Actual email:
Here is a little more background on myself. Use it if you like or scrap it if you don't. No worries. :)
Background:
My name is Tammy Malkowski, before I met my wonderful husband, I was Tammy Caramagno. I was born in 1971 and am the oldest of 5 girls. I have 4 sisters & 4 step-sisters. I grew up in Harper Woods until I was 10 years old when we moved to Grosse Pointe Farms. I graduated from Grosse Pointe South High School in 1990.
I went to Central Michigan University and graduated in 1995 with a B.A.A. in Interior Design.
My parents have a lot to do with the woman I am today. My dad taught me to always look at a problem from all angles so you're prepared for anything. He loves to play devil's advocate. My mom has taught me be myself and show the people you love how much you care. I have always been that person who stands up for the "little guy" or for some "injustice". Many times to my own detriment. I speak my mind, I love with all my heart and I am always ready to lend a helping hand.
I have been married to my husband, David, since 1997 and we have a 9 year old daughter, Kristina & a 6 year old son, Paul. We live in St. Clair Shores now. I have always wanted to be a stay-at-home mom, so when Kristina was 18 months old I became a newspaper carrier with the Macomb Daily in 2003. It allows me to help with the bills and be at home for my kids.
In 2008, I began having symptoms that eventually lead to my diagnosis of Multiple Sclerosis. I had double vision in one eye, I would lose my balance and fall, and my hands would tremble. Some things seemed so random, but when I would become exhausted after walking to the top of the stairs or just by taking a shower, I knew something was wrong. Once I was diagnosed with MS, my "Devil's Advocate" side of my mind played out all of my possible futures. My positive side kicked in and found ways to laugh at my symptoms. If I fell down in the living room & look for loose change under the sofa. I believe in planning for the worst & hoping for the best. Just because I have MS doesn't mean my life is over.
I can control each morning how I face my day. I choose to smile as much as I can and enjoy every moment. I may have to plan differently then I used to do. Extreme heat makes my legs weak & it's hard to walk. Extreme cold or high winds cause horrible pain throughout my body. I won't be bike riding anytime soon with my kids, but we can go for a walk, or read books together or just cuddle. I choose how I will be a parent. I refuse to let MS choose for me.
There are a few questions people ask me often.
#1) How can you still deliver the newspaper everyday?
I deliver the Macomb Daily 365 days a year & about 20-30 of those days I really struggle and wonder what I am doing. When I remember how few that is compared to the 365, I do my best to keep going. I can move the best in the morning & it keeps me limber.
#2) How do your children feel about you having MS?
I know they worry, but the one key thing I try to remember is how I felt when I was a child. The moments children remember the most aren't the expensive gifts you buy them or the places you take them. Children want to know their parents love them and to pay attention to them. I can do that with my heart, no matter what Ms does to my body.
#3) Why do you think you have MS?
I am a firm believer in everything happens for a reason. We may not always understand why, but we all have a role in the world. I am starting to believe I am meant to be an advocate for MS. I think I can help raise awareness.
I would love for people to realize that MS is different for every person who has it. Some may be wheelchair bound. I use a can for most of my day. Others may never have walking problems. Some people can rise above their pain and be positive like myself. While others will struggle to come to terms with it. There is no one face for MS or one way it looks, but it is still very real. I just choose to wear my MS with a smile on my face & hope in my heart.
Blog:
My blog about my journey with Multiple Sclerosis(MS) began as a way to update family & friends about my health. It has grown into a avenue about my health, MS, poems and stories and life in general.
Here is the link to my blog, "Pick Tammy's Brain":
http://www.picktammysbrain.blogspot.com/
Walk MS Page:
Here is the link to my MS Walk Page & the Brain Farts Team:
http://main.nationalmssociety.org/goto/tammymalkowski12
How Facebook helped me find my voice:
After being diagnosed with Multiple Sclerosis, I went online to search for other people who had MS too. I found the National MS Society's Facebook page. I quickly made many friends and found a place where people understood how I felt & who I could ask questions about my hopes, fears, medications & my future. I was able to offer support in return. After a couple of months, I kept hearing many of my friends with MS becoming frustrated when their friends & family would say, "But you look so good!" People meant well, but also assumed if you look good, you MUST feel good. I decided to put their words into a poem, and wrote "Seeing is NOT Believing". After I posted it, so many people were so grateful to me. It was very humbling because I felt like it was such a small gesture for them. Since they liked it so much, I have kept writing more poetry about it and am up to 15 poems and counting. I hope to publish a book of them to help raise more money for the NMSS.
This is still my most popular poem with people who have MS.
"Seeing is NOT Believing" Poem
Don’t believe because I smile
That the numbness went away.
Don’t believe because I laugh
That I’m not in pain today.
Don’t believe because my hair is done
That anything has changed.
Don’t believe my body won’t react
To the sun, the snow, the rain.
Don’t believe because I walk
That I’m not prepared to fall.
Don’t believe that “looking good”
Changes my health at all.
Don’t believe because I hug
That it doesn’t make me wince.
Don’t believe because I “look good”
That MS does not exist.
Don’t believe I will give up
The person I am inside.
Don’t believe that MS is gone
Even when it hides.
By Tammy Malkowski
1/30/2010
That concludes todays thought provoking news. ;)
Monday, April 23, 2012
Out of Sight, Out of Mind...Really?
Juggling... Juggling. That's what I've been doing lately. Juggling my life and my commitments. I'm actually not too bad at it. So far the stress hasn't kicked in. That is a miracle within itself. Typically, I have taken on too much and then I crumble because of my health. I can feel my health and my MS threatening me with little warnings, like a trip here and some clumsiness there. I stutter or slur or the fatigue seems to creep out. MS likes to make sure I don't forget about it.
That is an interesting comment. Can I forget I have MS? Some people with MS would scream "No!". I tend to agree. I don't believe I ever forget that I have MS & that doesn't mean that I dwell on it either. There is just always some reminder, some invisible clue that tells you it's still lingering, waiting & don't you forget it. There are times that I do forget though.
My forgetfulness has nothing to do with forgetting my diagnosis or what MS is & the accommodations I make for myself and others. What I do forget is some of my symptoms. There are some symptoms that are always with me, and by that I mean when they come out it isn't a surprise. I expect the fatigue, the blurry vision, even the double vision. The pain is never far from my mind. It comes and goes, and some days are worse than others. No one really knows why the symptoms ebb and flow like a sort of internal tide, but they do.
When I "forget I have MS", it's the "other symptoms" that are forgotten. The ones that come from time to time, but don't stay around long enough to establish any real pattern or expectation. I have been noticing these little gems popping up again. The tremors in my hands, the fatigue so overwhelming that you wonder if you can make it to your bed. The weakness of my legs when they become so heavy they feel like someone tied weights around my calves. They wobble and feel weak, like they can buckle if I stand too long. When my legs react like that, they are more prone to jerks and jumps. My favorite one (read with sarcasm) is when I can see my legs are moving to walk, but I cannot feel them because they are numb. It feels as if I am floating above my body. That one and the electric current, Lhermitte's Sign, are in a tie for the strangest MS side effects for me.
I also forget about when I have trouble swallowing too. You would think this would be the one I pay the most attention too. I don't want to be the one who chokes to death because I wanted to eat a jelly bean. There are typical suspects in the food world that make this worse & I know this. The problem with that is I remember as I am attempting to swallow. Mid-swallow, my throat catches & it makes me stop. The candy family like jelly beans or chewy lemon heads, those with the gummy, sticky consistency are not my friend. Nor is bread sometimes. Anything dry, that needs that extra push to break down as you chew then swallow can lead me to it's trap; bread. toast, dry meat and the aforementioned candy.
The forgetting part is when it happens & I think "I forgot about that one". When my legs take on a symptom and I stumble. the familiarity of the symptom is there, but since enough time has passed in between, I forget that there are more then the daily routine I have come to accept. When they come back I remember. I remember how it felt the last time. I remember how it scared me. I remember when I last felt it or the first time I did. I am fearful that it will lead me to a flare this time or that I could end up in the hospital. This is how a flare starts. Then I have to remind myself not to panic because the future is unknown.
It amazes me the things we learn to live with and accept as part of our lives. People do it every day. They accept their circumstances, good & bad. The wife who stays in an abusive relationship, the friend who accepts her role as the shoulder to cry on, but secretly wants her own turn, the mom who knows she will be picking up after her kids because they "forgot", again. People accept other health problems too. The person who has to avoid eating peanuts, the diabetic who knows when to check their sugar, the MS patient who takes her shots to slow the progression of MS every other day and "fingers crossed" hopes it is true.
We accept so much and become so driven by routine and fail to remember we can make choices to change the bad and the good. We can be dutiful, we can be responsible, we can be doormats & we can take more than we deserve. But we can stand up for ourselves. We can ask for help. We can be surprised, good and bad. Life is an unscripted, an unexpected journey. We never know what our day may bring, but every moment we have is a moment we can choose our next move. Sometimes life is impatient & shoves you in the direction it wants you to head.
I know I have MS. I forget that it can be sneaky and try to take over. It also serves as a reminder to me for so many things. MS reminds me to slow down. MS reminds me to expect the unexpected. MS reminds me to have a Plan A, Plan B & Plan C. I live my life with a smile on my face and laughter in my heart. I won't allow MS to steal any more than it needs from me. I live my life on my own terms, by planning for the worst & hoping for the best. I may have to juggle a lot between being a wife & a mother, but I can't forget that my health comes with many twists & turns that can cause me to drop a ball or two. Honestly, there are times it is a blessing to be pushed in the direction to take better care of "me". So these symptoms may be out of sight most of the time, but my body reminds me they aren't out of my mind completely.
That is an interesting comment. Can I forget I have MS? Some people with MS would scream "No!". I tend to agree. I don't believe I ever forget that I have MS & that doesn't mean that I dwell on it either. There is just always some reminder, some invisible clue that tells you it's still lingering, waiting & don't you forget it. There are times that I do forget though.
My forgetfulness has nothing to do with forgetting my diagnosis or what MS is & the accommodations I make for myself and others. What I do forget is some of my symptoms. There are some symptoms that are always with me, and by that I mean when they come out it isn't a surprise. I expect the fatigue, the blurry vision, even the double vision. The pain is never far from my mind. It comes and goes, and some days are worse than others. No one really knows why the symptoms ebb and flow like a sort of internal tide, but they do.
When I "forget I have MS", it's the "other symptoms" that are forgotten. The ones that come from time to time, but don't stay around long enough to establish any real pattern or expectation. I have been noticing these little gems popping up again. The tremors in my hands, the fatigue so overwhelming that you wonder if you can make it to your bed. The weakness of my legs when they become so heavy they feel like someone tied weights around my calves. They wobble and feel weak, like they can buckle if I stand too long. When my legs react like that, they are more prone to jerks and jumps. My favorite one (read with sarcasm) is when I can see my legs are moving to walk, but I cannot feel them because they are numb. It feels as if I am floating above my body. That one and the electric current, Lhermitte's Sign, are in a tie for the strangest MS side effects for me.
I also forget about when I have trouble swallowing too. You would think this would be the one I pay the most attention too. I don't want to be the one who chokes to death because I wanted to eat a jelly bean. There are typical suspects in the food world that make this worse & I know this. The problem with that is I remember as I am attempting to swallow. Mid-swallow, my throat catches & it makes me stop. The candy family like jelly beans or chewy lemon heads, those with the gummy, sticky consistency are not my friend. Nor is bread sometimes. Anything dry, that needs that extra push to break down as you chew then swallow can lead me to it's trap; bread. toast, dry meat and the aforementioned candy.
The forgetting part is when it happens & I think "I forgot about that one". When my legs take on a symptom and I stumble. the familiarity of the symptom is there, but since enough time has passed in between, I forget that there are more then the daily routine I have come to accept. When they come back I remember. I remember how it felt the last time. I remember how it scared me. I remember when I last felt it or the first time I did. I am fearful that it will lead me to a flare this time or that I could end up in the hospital. This is how a flare starts. Then I have to remind myself not to panic because the future is unknown.
It amazes me the things we learn to live with and accept as part of our lives. People do it every day. They accept their circumstances, good & bad. The wife who stays in an abusive relationship, the friend who accepts her role as the shoulder to cry on, but secretly wants her own turn, the mom who knows she will be picking up after her kids because they "forgot", again. People accept other health problems too. The person who has to avoid eating peanuts, the diabetic who knows when to check their sugar, the MS patient who takes her shots to slow the progression of MS every other day and "fingers crossed" hopes it is true.
We accept so much and become so driven by routine and fail to remember we can make choices to change the bad and the good. We can be dutiful, we can be responsible, we can be doormats & we can take more than we deserve. But we can stand up for ourselves. We can ask for help. We can be surprised, good and bad. Life is an unscripted, an unexpected journey. We never know what our day may bring, but every moment we have is a moment we can choose our next move. Sometimes life is impatient & shoves you in the direction it wants you to head.
I know I have MS. I forget that it can be sneaky and try to take over. It also serves as a reminder to me for so many things. MS reminds me to slow down. MS reminds me to expect the unexpected. MS reminds me to have a Plan A, Plan B & Plan C. I live my life with a smile on my face and laughter in my heart. I won't allow MS to steal any more than it needs from me. I live my life on my own terms, by planning for the worst & hoping for the best. I may have to juggle a lot between being a wife & a mother, but I can't forget that my health comes with many twists & turns that can cause me to drop a ball or two. Honestly, there are times it is a blessing to be pushed in the direction to take better care of "me". So these symptoms may be out of sight most of the time, but my body reminds me they aren't out of my mind completely.
Tuesday, April 17, 2012
Brain Revelation
Brain fart? Not so much. Liar? No. Forgetful? Maybe. So busy and taking on more than she can handle. Ding! Ding! Ding! Ding! Ding! We HAAAAVVE a winNER!!! I know, I know, I know. Last week I said I would have a new blog entry every Monday and it would appear Tuesday morning. Here we are the first Tuesday and you wake up to...nothing.
All I can say is best laid plans. The upside is it did get me on here today when I realized I messed up. In the past I would have put it off further, until I could "find the time". There's an interesting phrase; "find the time". Is it really lost? Where are we supposed to look for it? Did we put it somewhere & forget where we left it? That one works for me and most MSers, but I don't know.
My big New Years resolution was to take more time for myself and it would be "The Year of Tammy!". That worked a little at the beginning. I am still trying to get back to that goal. There have been some interesting wrinkles that have thrown it off course too. I just forgot that when we plan life always has a way of throwing you in another direction.
This time I am preparing for my MS Walk on April 28th in Bloomfield Hills, Michigan. This is not unusual, but I issued a challenge to myself and my fellow walkers. This year we need to step up our game and do more to raise money for the NMSS. My kids hosted a returnable can & bottle drive in our neighborhood. Our family is collecting loose change for the months of March & April. I am hosting a Family Game Night Fundraiser on May 18th at our church. This last one is proving to be a lot of work, as I anticipated, but it definitely keeps me busy!
Add to this, me being screened to participate in a MS Research Study/Clinical Trial (I'll give more details once I find out if I am accepted, some loose ends I am attempting to wrap up from last year on a past dispute & putting together a book of my poems with a "twist". It adds up to a whirlwind of chaos. This is before I even add daily things like brush my teeth and eat.
The thing is, I know I need to slow down. Pushing too hard can land me in the hospital or down for the count for a few weeks. I am attempting to pace myself. I still have managed to throw in a few phone dates with friends out of state and some coffee dates around home. I have made more time for the kids and I to play and cuddle. I had a rousing game of Trolls that involved a treehouse and a runaway boat going over a waterfall with my daughter Kristina this past weekend. It was a lot of fun and hearing her laughter and then her brother's when Paul came to investigate the racket I was making, was priceless and a beautiful sound. After an hour of this, I did fall asleep on Kristina's bed. She kindly covered me up & tiptoed away. Paul announced he'd wake me up and punched me in the stomach. Ouch! He means well. Surprisingly, he's usually the one who treats me with "kid gloves". Off day maybe?
I have been reading a book at night, which has been unheard of for me in the last 2 years. I'm reading "The Help" and it's really good. Sometimes, I can read a whole chapter & others one passage. I do like that this book will separate incidents within the chapter by putting several spaces between them. This way I feel like I can accomplish something before the fatigue pulls me under it's spell.
I started "My MS Yoga" again & even had my husband join me twice last week. It was really funny hearing him moan & groan over the positions. I kept having to stop to show him the right way to do it. He used to be such a health nut and was really into muscle training years ago. I was amused at the basics he forgot, like if a stretch hurts, you aren't doing it correctly. The second time, I saw definite improvements. I am trying to show him how his back can improve and have less pain by joining me. We shall see. ;)
I caught up on some of my TV shows and watched a couple of movies. I cleaned out a few drawers and had some chats on Facebook with some old friends & repaired some old wounds with friends close to home. I even have made some new friends along the way. I cleaned some things around the house that were bugging me too.
I actually feel better now. I felt as though I was completely off track with my "Year of Tammy" pledge, but I see now that isn't true. I am having my year of Tammy, but with all of the unexpected twists and turns that life throws are way. I have done many things I wanted to do this year. I may not have my "Schedule" written down to follow yet, or am I committing to it daily, but I am doing more than last year.
For me living with MS, I do need to keep taking my breathers and slow down. Health needs to be my number one priority because when "Mom" goes down, so does everyone else. I will take my moments of coffee with my neighbor or an old friend & yoga with my husband. Schedule a phone date or read a story to my kids. Watch a favorite show or a movie I love. Read a good book, or 2 pages, at bedtime. Put my feet up to take a nap or help someone I love accomplish their goal while we visit. Yes, I may be stretched thin at times, but I am doing more for me and in turn I am helping to show my loved ones I have time for them even more when I take the time for me. That's my Brain Revelation for the week! Now, go do something for yourself and do it guilt-free.
All I can say is best laid plans. The upside is it did get me on here today when I realized I messed up. In the past I would have put it off further, until I could "find the time". There's an interesting phrase; "find the time". Is it really lost? Where are we supposed to look for it? Did we put it somewhere & forget where we left it? That one works for me and most MSers, but I don't know.
My big New Years resolution was to take more time for myself and it would be "The Year of Tammy!". That worked a little at the beginning. I am still trying to get back to that goal. There have been some interesting wrinkles that have thrown it off course too. I just forgot that when we plan life always has a way of throwing you in another direction.
This time I am preparing for my MS Walk on April 28th in Bloomfield Hills, Michigan. This is not unusual, but I issued a challenge to myself and my fellow walkers. This year we need to step up our game and do more to raise money for the NMSS. My kids hosted a returnable can & bottle drive in our neighborhood. Our family is collecting loose change for the months of March & April. I am hosting a Family Game Night Fundraiser on May 18th at our church. This last one is proving to be a lot of work, as I anticipated, but it definitely keeps me busy!
Add to this, me being screened to participate in a MS Research Study/Clinical Trial (I'll give more details once I find out if I am accepted, some loose ends I am attempting to wrap up from last year on a past dispute & putting together a book of my poems with a "twist". It adds up to a whirlwind of chaos. This is before I even add daily things like brush my teeth and eat.
The thing is, I know I need to slow down. Pushing too hard can land me in the hospital or down for the count for a few weeks. I am attempting to pace myself. I still have managed to throw in a few phone dates with friends out of state and some coffee dates around home. I have made more time for the kids and I to play and cuddle. I had a rousing game of Trolls that involved a treehouse and a runaway boat going over a waterfall with my daughter Kristina this past weekend. It was a lot of fun and hearing her laughter and then her brother's when Paul came to investigate the racket I was making, was priceless and a beautiful sound. After an hour of this, I did fall asleep on Kristina's bed. She kindly covered me up & tiptoed away. Paul announced he'd wake me up and punched me in the stomach. Ouch! He means well. Surprisingly, he's usually the one who treats me with "kid gloves". Off day maybe?
I have been reading a book at night, which has been unheard of for me in the last 2 years. I'm reading "The Help" and it's really good. Sometimes, I can read a whole chapter & others one passage. I do like that this book will separate incidents within the chapter by putting several spaces between them. This way I feel like I can accomplish something before the fatigue pulls me under it's spell.
I started "My MS Yoga" again & even had my husband join me twice last week. It was really funny hearing him moan & groan over the positions. I kept having to stop to show him the right way to do it. He used to be such a health nut and was really into muscle training years ago. I was amused at the basics he forgot, like if a stretch hurts, you aren't doing it correctly. The second time, I saw definite improvements. I am trying to show him how his back can improve and have less pain by joining me. We shall see. ;)
I caught up on some of my TV shows and watched a couple of movies. I cleaned out a few drawers and had some chats on Facebook with some old friends & repaired some old wounds with friends close to home. I even have made some new friends along the way. I cleaned some things around the house that were bugging me too.
I actually feel better now. I felt as though I was completely off track with my "Year of Tammy" pledge, but I see now that isn't true. I am having my year of Tammy, but with all of the unexpected twists and turns that life throws are way. I have done many things I wanted to do this year. I may not have my "Schedule" written down to follow yet, or am I committing to it daily, but I am doing more than last year.
For me living with MS, I do need to keep taking my breathers and slow down. Health needs to be my number one priority because when "Mom" goes down, so does everyone else. I will take my moments of coffee with my neighbor or an old friend & yoga with my husband. Schedule a phone date or read a story to my kids. Watch a favorite show or a movie I love. Read a good book, or 2 pages, at bedtime. Put my feet up to take a nap or help someone I love accomplish their goal while we visit. Yes, I may be stretched thin at times, but I am doing more for me and in turn I am helping to show my loved ones I have time for them even more when I take the time for me. That's my Brain Revelation for the week! Now, go do something for yourself and do it guilt-free.
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