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!
Friday, June 22, 2012
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!
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