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Monday, December 22, 2008

Read My Mind

Well, I have been anxiously awaiting news of when the Clinical Trial for CIS/MS would begin. Apparently, my patience shall be tested further. The meeting did not happen as planned on December 17th. It has been rescheduled for January 14, 2009. They intend for the screenings to begin the following week. So, patience, patience, patience. <>

At least they aren't canceling the whole thing, which is what I thought at first. I've waited this long. I just really am curious to see my new MRI and if it has changed or not. Since I am feeling worse, I thought maybe there would be evidence of that on the MRI. Who knows? My tests haven't cooperated so far. <>

I have been so exhausted this week. And my arms and legs have been continuing to go numb. I got that tunnel feeling and thought my legs would buckle, like they did on Thanksgiving, this morning. I just sat down before it went too far. Paul sat down with me and cuddled in my lap for a while. So we waited for it to pass and got up again. The end result is while I am waiting for them to start reading my mind, I will sit and have patience, but I will keep getting back up...

Wednesday, December 17, 2008

Brain Drain

Wow! The last week has been a bundle of stress and excitement. Overlooking my previous post about confrontational stress, let's move on to Christmas stress and family excitement. Christmas stress, shopping for too long, baking cookies & making candy for two days straight. These are things I want to do and push to do because I enjoy them. Unfortunately, my body does not want to cooperate. It is so frustrating at 36 years old, that simple tasks that may have been just a long day previously, knock me on my butt! Whatever! It sucks and it's frustrating. I am not going to stop living though. Keep moving forward. <>

Family excitement: Well the bad excitement was rushing my son to the ER, (he has the Croup)...Scary when they struggle to breathe. He is fine, but only two hours of sleep that night. Great excitement is one of my oldest friends had her baby girl on Monday and my little sister had her baby boy on Tuesday! Other exciting news to be declared later, too. All very wonderful occurrences, but the running around for the last three days to visit and complete errands has totally drained my brain. <>

I crashed today. Could not keep my eyes open this afternoon. Took a two hour nap and then had to go get my daughter from school. I was shaking the whole walk there and back. I felt like I would fall again. I hate that feeling. Rubber legs. Shaking hands. My head feeling like it is in a fog. I get scared and inevitably that is when my kids decide to take 5 mins to decide which kind of cookie they want. All the while my head is screaming sit down! I end up snapping at them to hurry up because I don't feel well. You can imagine their faces. I just feel terrible. It's not their fault, they're being kids. I am trying to be a good mom AND take care of myself. Sometimes it just doesn't work out. <>

I wish I had my old energy and my old strength back. I feel so defeated when I can't be the wife and mother I want to be. The wife and mother I have always been. I know I can be good to my family. I just have to find new ways to define what that is now to myself. The simplest things can cause the most drain on my brain, but I am not giving up. My whole family is too important to me. <>

I want to cherish everyone I love and enjoy all of them, even if I have to sit down to do it. My advice...appreciate the people you love in your life. You need to be able to say, I made the most of that relationship. Expect some regrets, but make them few and far between. Don't waste time on petty things, be a friend, be a shoulder, be you!!<>

Monday, December 15, 2008

Brain Overload

It's amazing to me how a little stress can send me spiraling down. How it can actually physically debilitate me. I had a friend of mine have a meltdown with her family. When she called me her stress spilled over on to me and I became the one attacked.

My whole body reacted. My right hand began trembling so violently that I couldn't control it. It went almost completely numb and pain was shooting up from my hand to my shoulder. My body became completely drained of energy, so much so that I couldn't get off the couch for over an hour. As I am typing, I am regaining some of the feeling, but the pain is still there. The pain in my head is now throbbing.

The sad thing is, I was waiting for good news and I was shocked at how that phone call turned out. I am quite sure this friend of mine has now added me to the people she will cut off contact with for the near future. That saddens me most of all. I only tried to point out the importance of family and making the most of the time you have with each other. So much for using my brain for good philosophy or well meaning advice.

Hopefully, my friend will calm down and we can reconnect. I hope so. I guess now that I have a diagnosis, some people are done pussy footing around with me. The gloves are off. I'm keeping my gloves up and protecting the head, or as I call it, my brain casing...

Saturday, December 13, 2008

Brain Fart

Well, yesterday I had a brain fart. Well, I will call it that, whatever it was, it freaked me out at the time. I was out running errands for about an hour and a half. I drove to the dollar store and went inside for a cart. Once I got the cart, I turned around and all of a sudden I didn't know where I was. For like a minute, I was like what the Hell. Then I recognized the store I was in and I kinda panicked a bit. I was like "why am I here, why am I here... " I took a deep breath and I remembered driving there. I thought, "okay I came here for a reason, you just need to remember...please, remember." The whole thing lasted only about 2-3 mins, but it was a little scary. I finally remembered why I came there and I shopped for what I needed. <>

I don't know what happened. I know that you can have memory issues when you have MS, but I don't know about disorientation. Anyways, the rest of my errands, I walked around like the damn Rain Man. In Kroger, "OK, now let's go get the eggs." "OK, we have the eggs, now we need the butter." "How many stick butters do I need? 2lbs? Yes, 2lbs. OK, what's next." Mind you I was alone. So much for not being crazy. Ha Ha Ha!! I liked the Rain Man Movie, but you know, I don't wanna walk around looking for Judge Wapner and the People's Court! <>

Today I made cookies with my mom. That was nice and relaxing. Now I am pretty wiped out, so gonna get some rest. It is really important to rest. Isn't that when your brain cells re-boot??? Let's see how that goes...

Thursday, December 11, 2008

And so it begins...

Well everyone, Dave suggested that I start a blog about my experience rather than continuing to email everyone. (I know, it was Dave's idea...who knew he was computer savvy :) ) This way I don't feel like I am bugging anyone or subjecting anyone to details they don't really care about. So if you are here, you must be interested. <>

Back in 2007 I started having some dizziness and loss of balance. I explained it away from lack of eating to breastfeeding (2006). As I started having issues with my stomach, I thought my Crohns disease was out of remission. After a colonoscopy in January of 2008, I found out not only was it not out of remission, but I didn't have Crohns disease anymore. I never knew it could just go away, but my GI specialist said it can. Good news there, but no answers to the stomach problems, except irritable bowel syndrome, yipee. <>

When I started to have weakness in my arms and legs followed by numbness or falling asleep of my limbs, I started to worry. I was exhausted all the time, no matter how much I slept. I could barely eat and had long bouts of nausea. Add to that my equilibrium being off and I kept losing my balance and almost falling off and on, I was starting to get scared. I mean I'm only 36 years old, what the Hell! When I started having vision problems (double and blurry) and kidney pain, I had my husband, Dave, take me to the hospital. <>

Every medical assistant, nurse, resident and doctor I saw mentioned MS (Multiple Sclerosis) as a possibility. They completed many tests and then encouraged me to see a neurologist ASAP. I did see a neurologist referred thru my General Practitioner (GP). I saw "him" from the middle of March thru the beginning of April 2008. Needless to say the experience and the neurologist were a nightmare. (Names have not been mentioned to protect the Guilty.) He basically, came up with nothing and wanted to know if I was feeling better now. Jerk!! Bye, bye to "him". <>

I went back to my GP for a better referral whom I had researched on my own. One of the top MS doctors at St. John Hospital. From everything I read, MS is a diagnosis you come to by elimination first and testing second. Since there are so many things that can mimic it, you need to be sure. My feelings were if this new guy was the best available to me, he would either recognize it for sure or be the one to eliminate the MS diagnosis altogether. <>

This ended up being one of my better moves. We will call him my "Hero Doctor" or HD for short. HD never gave up and from the moment I met him, discounted the findings of "him" (previous neurologist...bad, bad neurologist!!) When he began working his magic of testing and evaluating and showing his confidence to find an answer., I teared up. I said, "I knew you would help me." Because from the moment I found him on the web, I had that feeling, this is my man. He can be the answer for me. <>

I met him in May 2008, and after a long and frustrating journey, riddled with many tests, exams, ruling out of many possible diseases, etc. and long, drawn out waiting periods we reached December 11, 2008. The day I was diagnosed with CIS (Clinically Isolated Syndrome). This was the day I got my answer. The answer that I wasn't dying. The answer that I wasn't crazy. The answer that would lead me to begin to not only help myself, but to give me hope that I can have a life with my husband and my children. That I can "keep moving forward." <>

Thank you, Jesus!! Thank you, God!! Prayer does work. Patience can be a virtue...even though being patient sucks!! and my hero "HD" can truly help me. That he would NOT give up on me. That he would tell me there is hope. Yeah and all hail "HD"!! <>

I agreed today to participate in a research study/clinical trial for people with CIS. People with CIS are at a high risk for developing MS. Individuals with CIS have had a medical event or events suggestive of MS but have not developed symptoms of "clinically definite MS". <>

I have been told I am a perfect candidate for this study. I am an official candidate for the study as of right now. They will begin setting up appointments for my first visit within the next couple weeks. If I am approved after the screening then I will enter and begin the trial. I will blog about my progress, side effects, symptoms-improved or worsened. After reading about the trial, I found that the side effects will be the same if I took medication already approved for this. The true benefit I found is, I will be looked at as if under a microscope. MRIs will be performed and repeated every 3-4 months, I am to keep a diary of my symptoms, etc for review. Followed by blood work, and all evaluations of my vital signs, etc. Plus I will be continually re-examined by a neurologist throughout the study. And "HD" is the evaluating physician, so I can still see him! Happy for that. The drug they are studying is supposed to prevent or delay the onset of MS. <>

If at any point I am diagnosed definitively with MS, I move to the next level in the study which is a maintenance phase drug to try and keep MS in remission. Both drugs have been tried before, either in other forms or are now being improved upon. <> <>

I intend to answer any questions or concerns you have. The support of my friends and family has been invaluable to me. Thank you. Thank you all for your love and support!! Now let the games begin...