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Tuesday, April 20, 2010

Brain or Shine!!

Hello Friends & Family!!!
I am doing well!!! Yes, you read correctly. I am doing well!!! I have been feeling better than I have in months for about a week now. Soooo excited! I have accomplished so much this week. I cleaned out closets, I spring cleaned my living room, dining room, kitchen & 1/2 bath. I took Paul to the park...BY MYSELF!!! I took Kristina & Paul to the MALL & DINNER...BY MY--SELF!!!! I put away Winter clothes & got out Spring/Summer wear...I could go on, but why bore you?

These normal things, these everyday accomplishments for others are big milestones for me. Accomplishing general chores is not easy for me. Sometimes walking up the stairs can exhaust me. So needless to say, cleaning hasn't been the biggest priority. When I actually did get some energy for it, I typically only got to dust the living room. Basically cuz I couldn't stand staring at it anymore. I am definitely the type of person who has trouble letting go of control of things. So not being able to decide if my house would be clean or not was frustrating.

Being a mom, having a clean house all the time went out the window years ago. But this was worse. It went much, much longer. I knew people understood & most weren't judging me, but it was embarrassing to me. A simple task seemed like climbing a mountain. Impossible. I normally stick with the basics for my family. I make sure their clothes are clean, their bodies are washed, their beds are made and they have a good breakfast, lunch & dinner. If I could offer these basics, at least I would have given them healthy & clean lives. I help Kristina with her homework & read stories to them or watch a movie and lots of hugs!!!

Playing just isn't always an option for me. I tire out so easily and forget about it if the sun is hot. I am not looking forward to this Summer. Last Fall, the townhouse co-op, where I live, had to make the decision to cut down our beautiful, majestic, shady tree. I cried, no, I sobbed. Not only did this tree keep our home cool and a/c bill down, but it allowed me to be outside with my children if it wasn't muggy. I could sit under the tree and watch them ride bikes or run & play with their friends. Be there when they said, "Mommy, watch this!" But now... No tree. No shade. No way to sit outside. I cried for my tree, but I cried for my freedom too. I don't want to be a prisoner in my own home. That tree gave me an option. An option to be with my children. To try and be...normal.

I talked with Dave & we are going to look into buying one of those canopies that people put over their patio furniture. We don't have a patio poured so we need something that maintenance can work around when cutting the lawn. They said this would work because they can weed-whack around the poles/legs. So that will be the next purchase after the Spring. Hopefully that will give me some freedom.

When I took Paul to the park, I was so happy! When I got there and realized the trees didn't have all their leaves for shade, I panicked a bit. But I found a shady bench after I played with Paul. Then I could watch as he happily showed off for me. We walked down to the beach by the lake and Paul put his toes in the sand. I lasted 40 minutes. I was happy. Normally 5-10 mins and my legs are wobbly. As we started to walk back the loooooonngg way to the car, Paul looked up at me with his tiny hand in mine, and said. "Mommy? This is taking a long time." I said, "Yes, Paul. For me too. But we'll get there." We did. Home with Slurpees and big smiles. Oh, and a nap!!

I will take this reprieve from MS as long as it lasts. 7 days and counting... Brain or Shine, I will overcome MS. I will do what I can to live normally. And when I can't, I will take care of me. But Brain or Shine...I am still moving forward!

Monday, April 5, 2010

B-B-B-Brain F-F-Freeze

Been a busy month for me. After my visit with Kelly, she ended up in the hospital with her own bad, bad flare-up. I rushed up to Grand Blanc to visit her and the stress of that week and the worry pushed my beginings of the flare from the previous week into overdrive. I actually was pretty good at hiding it overall, but by Saturday, March 20th, it escalated pretty badly.

I had symptoms that had not been there before. I took my daughter to her First Communion meeting and while we were there my right hand began trembling. My body has the "inside tremors" quite often, but normally no one can see them. This time my hand was visibly shaking. My legs were very weak, and even though I had my cane,I was resting my hands on Kristina as well to keep balance. My brain was very "foggy" and I couldn't think clearly. I did my best to keep it together for her and finally it was time to head home.

I was supposed to pick up lunch on the way. I was feeling a little out of it still, so I handed Kristina the money because it didn't "look right" to me, even though I knew it was. I told her to hold it so I wouldn't make a mistake. From here I proceeded to drive home. I was almost there when Kristina says, "Um, Mom...what about lunch?" I said, "Oh, no!" And turned the car around. She said, while shaking her head back & forth, "MS again." So we started to drive to get the pizza. She said, "Mommy, your voice sounds funny." I said, "I just wan-wan-want to g-g-go h-h-HOME!" I couldn't talk. Stuttering and slurring. I was a little scared. I accessed the situation when we left the church and knew I was okay to drive, but I just wanted to get there. My instinct to protect my child was there, so I knew she wasn't in any danger. I definitely would have called my husband if I thought otherwise.

So we got the pizza and headed home...again. When we got there, Kristina immediately told Dave I was talking funny and that I almmost forgot to get lunch. I showed him my hand too. The weekend when Kelly had been here, I had a few instances where I had trouble swallowing food. This comes and goes for me without warning. Some people with MS experience this regularly, but so far it is sporadic. As we sat down for lunch, the swallowing problem re-appeared. I didn't eat very much because of it.

I spent the rest of the day trying to take it easy, but it didn't help my symptoms subside. Earlier in the week, I began having to crawl up the stairs to get to the top. When I went up to bed that night, as I was trying to get up to stand, I fell over in the hallway. I tried to laugh it off for the kids, and Dave didn't see me fall, so he thought I was just laying there after I crawled up. Needless to say, I knew a fall is never good. After that, I began going down the stairs on my butt. My legs were so weak I was afraid I would fall down, so this was a safer option.

The next morning for my paper route the cognitive issues were still there. I was talking on the phone to two of my "newspaper" friends and they noticed right away I was struggling to complete thoughts or get words out. When my Distract Manager showed up to help me with my route, I knew I sounded bad. I appreciated the help. I felt like an idoit when I spoke. I couldn't think of words or complete sentences or thoughts. It was scary to know that you are an intelligent person and your communication goes out the window.

I continue to go up and down the stairs this way. I have had a couple random moments where I can walk normal on the stairway, but they haven't lasted. I feel like I am getting to the end of this flare-up. The cognitive/brain issues have subsided. No more consistant stuttering/slurring and brain is clearer. But the physical symptoms keep coming and going. I start to improve, but then the fatigue, pain & weakness return. I keep hoping it'll pass on it's own. Scary enough to worry me at first, but not so bad that I want to do steroids again. I see the neuro in May, so I will mention this episode then.

I also, have to mention this itching I get on my bottom eyelid of my right eye the day after my shot. It never goes beyond that, but I'm gonna mention it in case that's a problem. Hope not, cuz I'll be out of shot options then.

I went to visit Kelly and her kids again last week and she gave me 2 of her old canes so I can have one for the car and one for upstairs & downstairs. Both are pretty and fasionable! I am a stylin cane walking girl! Even if I have a B-B-B-Brain F-F-Freeze every now and then!