The BS of my MS

I was diagnosed with Multiple Sclerosis April 11, 2006. It was a fairly quick diagnosis and there are days/weeks I can mostly ignore it. For those days I can't, this blog documents my journey.

Monday, July 17, 2006

Today, for one of the first times, I felt "handicapped." Because of the hot weather (high 90s with heat index of 107), I decided to drive work/school. I haven't lived through a summer with MS (or knowing I had MS, at least), and I want to be cautious as to not let it get the best of me. I planned on parking in the pay lot since I had to work and had class. Well, there is a summer session going on, and the pay lot was full. So, I was stuck with 2-hour parking. That is fine if I am at work and can move my car. However, I had to skip French. I live 6 blocks from school/work, and I try to take advantage of my mobility while it's here. But in the heat, I thought it would be best to drive.

If I had a handicapped tag, I could have parked. But really, I don't feel handicapped. For the most part, I feel good. On one hand, it is my MS causing me to be cautious of heat exposure. Yet, I feel there are people who are much more in need of handicapped parking. I was just so frustrated because I kind of felt like my MS made me miss out on something I need to do (i.e., go to French class, since I don't understand it at all!) Ugh.

Today, my left hand feels a bit tingly--nothing major, but just a smidge. Also, I have had this strange tingly/squeezing feeling in my head--a feeling I get with headaches. But today, there is no headache, just that strange feeling. And whenever I sit in this chair and get up, I feel stiff, as if I am 80 years old. I don't know why I am making a laundry list of these things--perhaps just to document it so I can go back later and see, "Yes, I was having ___ at that time."

Well, I should get to bed. I have to give myself a shot before I go. Lucky me! (*sarcasm*)

Sunday, July 16, 2006

Yesterday, I got sick. I'll spare you the details (though if you are really curious, visit the link in my sidebar to "my other blog". Let's just say, I am going to carry bags in the car from now on, in case I suddenly get nauseous. My mom reminded me of my last bout with throwing up back in March. It was right in the middle of my first major flare up--I was dizzy and got sick several times within a few hours. Later came the stiffness and serious lack of balance, that has sense passed. Could there be a link between these two episodes and my MS? Or is it just a fluke? It's interesting that now, if anything happens, people automatically ask if it could be my MS. On one hand, it makes sense. MS symptoms span a great deal of things. On the other hand, it's possible that I will still be sick sometimes, completely unrelated to MS. Who knows?

I was thinking yesterday how thankful I am to have insurance. I am glad I am a student that is required to have insurance, because it is quite possible that I would not have been insured during this time--you know, to save money. I am thankful that when I was diagnosed that I had insurance. Granted, I have a $1000 deductible, easily met with an MRI. Yet, the "negotiated rates" that insurance companies and doctors office agree upon are a life saver. I have saved so much money on that, alone. It makes me not be able to imagine what it's like for people without insurance, who have to pay the high face-value sticker price of treatments and medical services.

One thing MS has done to me is it is made me increasingly wary of the whole healthcare system. On one hand, I have been very blessed by some forms of assistance to help get my meds and help with medical bills. However, it's weird to me that healthcare is an industry--it's a capitalistic venture. Prices are negotiated. Doctors tend to prescribe medicines from a drug company who gives them incentives and gifts. Drug companies are trying to come out with new medicines, not because they help people who need them, but because there is money in it. That was a startling reality my MS nurse shared with me--the first company to find a pill that works for MS will jump on it--if only for the money alone. I know that's life, but part of me thinks it's a sick reality too. When for some people things are matters of life and death, mobility or immobility, being free or being confined--why is money the factor? Ugh. I am so jaded by capitalism.

Thursday, July 13, 2006

Today I went for my follow-up with the opthamologist. I told him that since seeing him, I had been diagnosed with MS. He made a notation of it, but he didn't seem too concerned. He said that it had not affected by optic nerve, which is good news. I have to go back in 4 months for a field vision test. I wonder how long I will have to keep going back? The last time it was 6 months between visit; this time 4 months. Thankfully my visits are medical, rather than optical, so my insurance will cover it. (I don't have vision insurance). Though, he considers me pre-glaucoma (I have borderline eye pressure) and now with MS, he wants to keep things in check.

I am really thankful to be where I am right now, in terms of where I am living and the hospital I go to. On all of my bills, there is a statement that says, "____ Hospital has a financial assistance program to assist patients who qualify." Well, I applied for some help with my bills, as I had a $1000 deductible, plus a few other costs above that. I am sure I will incur more charges on my follow up tests, too. The hospital completely cleared me of my bills--they wrote them off, and consider me to be paid in full. On one hand, I feel kind of bad. On the other hand, I submitted our financial records and we did qualify, so I suppose it is to help people like us. We are a young couple--I am a full time grad student and work part time--and my husband works at a popular bakery restaurant while looking for something in the field in which he has a degree. So, surprise--we really don't have a lot of money. Plus, Chicago is pretty dang expensive. I consider the help a blessing, and really, I don't think I should feel ashamed, should I?

Thanks for the advice on the injection-site reactions. I have tried ice and rubbing, which doesn't seem to help. They aren't painful, thankfully, just not pretty. I guess no miniskirts or mid-riff tops for me! (This is even funnier if you really know me!)

I am kind of impressed with the sense of "community" I have found through this journal. The words of encouragement from people I know, but perhaps moreso from the people I have never met is surprising and welcomed. So, thank you.

Wednesday, July 12, 2006

I tried taking just one extra strength tylenol with my medicine on Monday. Success. I didn't have a bad headache or anything. Woot!

I DO have these ugly red circles (injection site reactions) where I give my shots. They are usually gone by the time I get back around to that spot. But still, they aren't cute.

Oh well, things are going well. I go back to the eye doctor tomorrow to follow up with him from the issues I was having in February. I think I will be going back to my neurologist in August.

I have been uber tired lately. Not sure if it's related, or if I am just tired. But I took a three hour nap on Monday, and still wanted to sleep more. Ugh! I have too much to do to be this tired.

Well, even still, can't complain.