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Monday, September 27, 2010

Brain Train

Hello Family & Friends, I decided last Monday to set some new goals for myself. Last week my goals were to drink 8 glasses of water a day and to start doing this MS Yoga DVD I received for free back in March. So I did all I was supposed to do.

I really like this yoga DVD! It was sponsored by one of the pharmaceutical companies who hired a yoga instructor and a neurologist to speak on the DVD. There are 3 different selections to be made from the menu. The first is called Foundations. This one gets you set up with the basic moves and is set at a gradual pace. I really was impressed that they show all levels of ability in the program. Some were a little more advanced, others were using a chair or other modifications to assist themselves to get into the positions or even modifying them. I never felt like I couldn't keep up. It is reiterated throughout the set by the instructor to go at your own pace, to do what you need to do on that day. So if you feel you can push further then go ahead, but if it's a bad day, then go slower.

The next level is called Transformations. I haven't reached this level since I just started, but I did watch it on fast forward to see what other moves they were adding. It seemed just a little more advanced. It seemed to last longer and repeat more of the movements. There were some new positions that they added also. Nothing seemed too difficult in theory. I look forward to reaching this level.

The last level is called Restoration. This is simply for relaxation and stress relief. I did this one time this week. It was very nice. Good for a day that I am stressed out and looking for a little relief.

I definitely could tell a difference this week in how my body felt and moved. I definitely felt more relaxed and less stressed out. I even feel a little lighter. Maybe it will help lose weight, but that not is the reason I am doing it. I did it everyday except Sunday. Sunday is my big paper route day so sleep is more of a priority.

I saw Dr. Beall on Tuesday and he remarked at how limber I was. I hadn't even told him about the yoga yet. He said to keep it up and that would really help me during a flare and maybe lessen their occurrences. Bonus! He felt I was doing well with the exception of the right hand tremor. That brought some concern from him. He wanted to start steroids to help get rid of the tremor, but I asked if we could hold off. He said that would be fine. I really don't want to do steroids unless I am really bad all over. It can't be good to have steroids in your system that often. I also told him that I didn't fill the prescription to calm the tremors because I didn't want to add another med if it wasn't that bothersome at this point. It is happening more often so I may change my mind on that one.

Also he is filling out a form for me to get a handicapped parking permit. Yeah! There has to be some plus to having MS. Some people were surprised I didn't have one yet, but I thought I had to wait for a definite diagnosis of MS. Apparently they are easier to get than I thought. So once that is finished I will go pick up my permit.

This week, I am adding a multi-vitamin and at least one snack of veggies or fruit a day to my list of goals. I am not giving anything up at this point. Nor do I really plan to limit my available foods. If I want a cookie, I will have a cookie. If I want dessert I will have that too. I figure if I start adding in good habits the other things won't seem as important and leaving them as an option won't feel like I have deprived myself. I will keep you posted on my progress with my new goals.

Lastly, I started having some more difficulty walking again. I was doing very well last week, but last night, I tried to stand up from the couch and fell backward onto it. My feet were almost completely numb and my thighs seemed numb or just odd. I can't explain it really. It was as if my thighs wouldn't support my body. Dave had to help me to the stairs as I took baby steps while holding onto his forearms and he walked backward. I hoped sleep would bring relief. It didn't. I woke this morning and as soon as my feet hit the floor, the night before came rushing back to me. The feeling was still there. I was nervous, but I needed to go to work.

I could've called in, but both my boss and manager are on vacation and they are the only ones who know about my MS. I didn't know how well it would go over without them there. Well I do know. The other manager would've freaked out. I could've woke up Dave too, but I didn't want to ask him. So I went on my own. I moved really slowly and eventually finished. I almost fell a couple of times, but I caught myself.

When I got home I considered skipping the MS Yoga, but I thought it might help. Maybe skipping a day was why I felt like this. It wasn't. I did do it. I took the option to modify my workout based on how I was feeling. I held onto the wall for support and didn't push too hard thru the stretches. I felt like I was gonna pass out or be sick to my stomach thru most of it, but I didn't. I am glad I did it because I want it to be a part of my routine. My legs are still hurting and feel weak, but that is just part of my life now. When I wake up, MS surprises me by letting me know how my body will feel that day. Forrest Gump had no idea when he mentioned the box of chocolates how profound he was being. I really never know what I'm gonna get! No matter what though I will ride this Brain Train and find a way to enjoy the ride. In this Train I am the engineer, so look out world here I come!! Woot! Woot!

Monday, September 20, 2010

Mind Control

Hello All, I see Dr Beall in the morning. I suppose for a follow up from last time. Not really seeing a reason to go since I don't need is assistance right now. Thank God Summer is over!! This Summer was brutal on my body. I tell people that I slept the Summer away and I am not totally exaggerating. The heat & humidity trapped me inside the house and brought out new symptoms like the MS Hug. My flare-up lasted from the end of June until the end of August. That's a long run and I certainly wasn't ready to give up, but MS was a worthy opponent this time.

I am feeling better as far as fatigue goes. Fatigue is probably one of the hardest things to deal with from MS. The pain, when it rears it's ugly head, is definitely tied for first place. When I am not exhausted or in pain, I find it easier to face the rest of the challenges of MS. For example, lately I have been experiencing tremors more often. While noticeable it isn't bothersome enough to warrant more meds or to make life more difficult for me. I just kinda roll with the punches or go with the flow. Love the cliches today?

I was speaking with a good friend of mine recently, who doesn't have MS but faces her own health challenges. We have recently re-connected due to our shared experience of our own bodies rebelling against us. In this conversation we both concluded that while the physical limitations are challenging, and we have to be creative to live our daily lives, it did not compare to the mental or cognitive lapses some people can experience. I have had these cognitive issues in the past and blogged about them here. Times where I was disorientated or couldn't think of the word I wanted or slurred/stuttered or simply was trying to listen to a conversation and feeling the whole time they must be speaking in a different language. These episodes scare me more than the physical.

If my MS path leads me to a wheelchair then I will adjust, I will deal with it and move forward in my life. I am in no way implying that having to use a wheelchair temporarily or permanently wouldn't be upsetting. It is definitely a cry worthy moment. I would work through it though. If the mental or cognitive issues became permanent, I don't know if I could deal with that as well. With physical there are all kinds of tricks and aides to assist a person. If you can't type there is a vocal recognition software called the Dragon that'll type for you. Can't Walk? There are canes, walkers & wheelchairs. Hands shake or experiencing spasticity or loss of manual dexterity? There are meds and physical therapies to help overcome or lessen those limitations for you.

The mental problems have been proven to be less when you keep your mind sharp & active by doing things that continue to challenge your brain. Some people like mind games like Suduko, or crossword puzzles. Something to stimulate the mind can help. No matter what though I will never give up being the person I am.

I do have a new symptom that appeared about a week ago. My right leg has been either very rigid and hard to walk on or it makes me walk with more of a swagger. If you see me I may exaggerate this just to get a laugh. I call it my "Standing Worm Move". Like that old dance move from the break-dancing era people did on the floor. I've perfected it and do it while WALKING! Ooooooooo, Aaaaaaaah. I know. I am impressive. ;)

This week I have decided to try something new. I haven't really been combating my MS physically in any way so I have 3 goals for this week. First, I will take my Provigil, anti-fatigue meds, every morning & afternoon. No matter if I am tired or not. (I usually only take it if I have slight fatigue. If I am really tired I don't bother.) Second, I will drink 8 glasses of water a day. I used to do this, but with bladder issues, etc, I have gotten away from it. Water is good for you and it is a good start to better my health. Lastly, I will follow my MS Yoga DVD, that I have had since March in the wrapper, to help me get in better physical condition. I am curious to see how I feel in a week.

Today, I put all three of my goals into practice. I felt good. Pretty decent actually. Still have a tremor and a messed up right leg, but I felt good. I stood and glued Box Tops for the elementary school for 45 mins while the kids did their homework. Stood. Did you get that? I stood for all that time without having to sit down. I helped with homework and cooked dinner. In fact, when all was said & done, I was in the kitchen for an hour and a half with no break to be had or needed. I budgeted my time like I always do, but I felt almost normal. MS normal. This is good.

This MS Yoga DVD will be good for me. It has different levels so you can adjust how you're feeling that day. Also it has a restoration segment to help calm you & let go of stress. Bonus! Some of the positions were quite amusing. Several times I scoffed and said out loud, "Are you kidding me?" But they always had an alternative way to do it, just in case you couldn't fully reach the position they were describing. Hubby was in the other room saying, "I don't know if you like this dvd or not, but it looks pretty good to me from over here!" Pig! Men. Always checking out women and thinking dirty. I laughed though. Hey, as long as he still looks at me that way, I'll take it.

In the end, I am looking to keep as much control of my mind as possible. So these new steps may be the key to helping me? If anyone is looking to control me in any way, they should know better. The only one getting any mind control over this body is me, me, me!

Here is a link for the DVD I am using:

Wednesday, September 1, 2010

Mental Meltdown

My last post was about finally getting the confirmation that I had known for 2 years. I don't know if relief was what I felt because who is relieved to confirm a disease? Satisfaction? Maybe on some level because I knew I was right, but that isn't it either. A little smug? Kinda since some people still felt I was looking for attention or deluding myself, though they'd never say it to my face. Sadness? Not really. I dealt with the idea of having MS in my heart in November of 2008 when I got the "probable MS" answer. Anger? Nope. Not that one either. If I had any anger over MS at anytime, it would be for my husband & children and what my having MS means to them. So what was I feeling?

At first, I couldn't understand how so many of my family & friends reacted as if this was brand new information. I mean, we all kinda suspected this was true. Many had accepted that it was true along with me, but still there was a reaction. I expected the responses of "I'm sorry that you have MS, but I'm glad you finally know for sure." It wasn't Earth shattering after all. But others reacted differently. Some cried, some hugged me a little tighter, some were asking if I needed anything. What would I need? In my head & heart nothing had changed from the day before the confirmation. I still am the same. I still take the same meds. I still feel the same, look the same, act the same. But people were different.

At first I was a little angry about it. Not at them personally. I know they love & care for me. I know many were holding out hope that it was something else. Something different either for themselves being unable to deal with knowing someone who has a disease like MS or unable to comprehend MS as a possibility at all for me. It made me feel like they didn't believe me. That they were among the ones who thought I was wrong or somehow living in a fantasy world where I can have attention for being "sick". I talked it over with a few people to try and work it out in my head. This helped me.

Then a funny thing happened to me. Not funny HaHa, but unexpected. I had a reaction. About 5 days after the confirmation, I was preparing my injection. I was tapping the bubbles out the top of the syringe to make sure it was ready for me. I was checking to make sure I measured the dosage correctly and all of a sudden I noticed myself. Almost out-of-body. I thought, "When did this happen?" I looked around at my husband and then at the bottles of pills sitting in the kitchen and thought, "How did I get here?" I'm the person who has hated shots her whole life. I'm the one who crossed the street until she was in her 20's when she saw a squirrel because a story in the 70's was on the news about rabid squirrels. They claimed if you were bit by one it would result in 40 shots in your tummy. That was enough info for me. Yet here I am, ironically, injecting my OWN tummy. "How did this happen?" I did my shot and iced my tummy and then sat for a minute. "I have MS" I thought. I have Multiple Sclerosis".

I stood up to head up to bed. My husband stood to hug me good night. I didn't let go. I hugged a little tighter, a little longer. HE said, "Are you alright?" I said, "yes". I kept standing in his arms. "Are you sure?" He asked. "Yes, I am. I love you. I'm going to bed." He answered the same & I went to bed.

The next morning while delivering papers, I thought of my reaction. My mild shock or realization because, again, this isn't brand new information. And I realized something. I had known from the moment I hit the ER in March of 2008 that MS would be the end result. I had done my research. I had experienced all the tests...twice. I had 2 neurologists, one a nightmare and the other my avenging angel. The one to help me reach the conclusion I already knew in my heart. I had 4 MRI's, 1 Spinal Tap and been poked & prodded. I looked into any possible alternative diagnosis that family & friends gave to me. I fought against the naysayers to prove to them that it was MS. That I wasn't crazy. That I hadn't manipulated the neuros, my family dr, the pharmacy & the National MS Society into treating me like I have MS both mentally & physically. I absorbed info in books, on websites and found ways to help myself through many symptoms and gave in to the help that was offered and that I knew I needed for myself & my family. I found a lifeline, a support group, if you will, online and made many valuable friendships that grow everyday. Some by number, but many through our hearts. I did all these things, but I never stopped to think what the confirmation would mean.

I HAVE MS. I HAVE MS. i HAVE ms. I fought for so long, I didn't take it in. The finality of what it would mean. The course my life will take. The answer I knew that will now & forever be true. You were right, Tammy. Yippty Do For You! Congrats. Now what?

Nothing really. I face it. Basically like I have been: With a positive attitude, information, a good sense of humor and family & friends. I keep my online Facebook page and NMSS Page open to support me and for me to give my support to others. I've said before that I felt I was lead here, to MS, for a purpose. Maybe it is to take my "mom qualities" to the NMSS Page and help where I feel needed? They get support and I get to feel appreciated for being "everyone's mom". MS is still NOT a death sentence. It isn't any real sentence because no one's path with MS is the same. I will find similarities, but I can't predict the future any more than anyone else can. Even the healthy ones.

I do know this. I will continue to do my physical therapy exercises that I learned. I will try to add in the MS Yoga to help improve my shape and health. I will use my cane when I need it. I will ask for help as well. I will smile & laugh & be a wonderful wife & mother. I am Tammy Malkowski. I am still me. I am still all the wonderful things I was before and I am still all the awful things too. My mental meltdown gave me the freedom to fight harder than I was before because, while I didn't give up, the fear that "improving" might postpone my inevitable diagnosis held me back. I didn't want to remain in this limbo of health, life & spirit for even longer. So my freedom is what I got.

My reaction is that the meltdown lead me to the freedom to be the smart, funny,hard-working, sarcastic, shock-you-till-your-jaw drops, amazing person that can only be me. I am Tammy. I finally had my mental meltdown. I have MS. And my life will remain as I have said from the beginning of this journey: Keep Moving Forward. Feel free to join me. <3