Friday, October 21, 2011

Life with MS

So here's what's bugging me today:
In February I started Avonex. It was rough for about a month, but when I figured out the particular "cocktail" of meds to take with my shot my symptoms started to get better. Since then, things have been going great!

Well, not really. I have felt better. More energy, better balance, better strength. But my liver has been hurting since I started Avonex. Dr. Crowe ran tests on everything but the liver and found nothing. I just stopped pressing the issue because it costs so much to go to the dr. And I have insurance!

The energy increase is probably from the caffeine that I have been taking. Yep. A No-Doz, Stay Awake, r Jet Alert. Whatever form of straight caffeine comes cheapest in the bottle. One of the tablets is equal to about two cups of coffee. So I justify it that way. Caffeine is not the enemy! It's the carbonated, chemical-laden beverage that is! Or, it could be the 6 cups of coffee a day that you are drinking. For me, the one tablet.

My migraines are almost non-existent now. Well, until this week, but I will get to that in a minute. I think, since February I have had maybe 2 big migraines. I used to have one a month at least!

So like I said, things were going well, but not perfectly. I was faking it pretty well, I think. Even fooling myself.

Dr. Bashir was well pleased with the positive progress I was making. He was distressed by the liver pain though. So he said that I couldn't take ibuprofen and tylenol as my symptom reducers with my Avonex shot. he gave me another drug. Mobic. Supposedly an NSAID like Celebrex.

Needless to say, I was very nervous. Things might not have been as perfect as I was making them out to be, but I didn't want to go back to the severe flu symptoms that I had in February either. But 3 hours before I took the shot, I took the mobic. And nothing else. Like the good little girl that I am.

I will admit that I was cold before I took the shot at 7:30pm. It was not a cool night, so this was not a normal feeling, but I got under the blanket and was fine. So it was fairly normal. About 2.5 hours after I took the shot, the symptoms started. Usually I have a major increase in the burning, sensitivity, and stinging in my skin, so I was not surprised when that started even though it was earlier than normal. But about 9:30, when Andy came to bed, I was freezing. I put two thick blankets over me, wrapped up in my thick chenille robe, put on pants, socks, and a long sleeve shirt, and then had Andy put two more lighter blankets on me. I even put on a head cover. I thought I just needed to warm up. I was trying to "positive think" myself out of what was actually happening.

Around 10:45 I gave up the ghost. I woke up chilled. Not hard chills, thank God. I got up and decided I had given it the old college try, so I gave in and took 2 ibuprofen and 2 tylenol. I was feeling feverish and chilled, so I decided to warm up in the tub. My fever was 102. After the hour long hot bath, 100 and no longer chilled. I felt like a wimp. Giving in to the drugs. But I was p'd off that my cocktail was dismantled in the first place!

So I have been flat of my back all week, basically. In bed on Monday, but on the couch the rest of the week. I have felt awful! Beyond that, I have been depressed all week. Depressed because I was sick, depressed because I am losing time that I need to be working on items for the craft fair, depressed because I went 5 days without a bath, and depressed because I may have to do this all over again next week!

You see, I called the Dr on Tuesday and told them what's up. The nurse called today and said they are changing me from Mobic to Celebrex, but to still avoid I&T, if possible. Although I am allow one tylenol, if absolutely necessary. Hmmph!

Here's the thing. In February, I suffered with the severe chills, fever, aches, and days of not feeling well. It got better. I figured out that for me, taking an alleve before the shot and then two ibuprofen and two tylenol 2 hours after the shot would alleviate all side effects of the Avonex. It was the perfect combination. Everything was going great.

Well, not really. Apparently my liver didn't like the cocktail anymore than it would have liked an alcoholic cocktail. So I will have two tylenol waiting for me by the bed when I do take the shot this time, even with the Celebrex. I'm a renegade.

Geez! So NOW the nurse calls me back and says the Celebrex is on a step therapy with my insurance. Forms have to be filled out! My insurance won't cover Celebrex (Step 2) until I have used Mobic for 30-60 days (Step 1). My nurse said that she has gotten approval before, but sometimes not too. She said the Step therapy is for arthiritis sufferers, not for MS related issues.

Whatever.  I'm getting to go back and have my cocktail of drugs. I will at least feel better next week, even if my liver won't.

This is totally a soapbox issue for me. This is a personal example I am using. The hospital charged $15.49 for nasal spray. It was basically Equate brand nasal spray that was $0.97 at Walmart. BCBS paid the hospital $3.59 for the spray based on the contract the hospital has with BCBS. Now, the person who walks in from the street without insurance must pay the full $15.49 for the spray. That uninsured individual can "settle" their account for less, but it will negatively affect the individual's credit rating! I mean think about it! In the day and age that home insurance companies are folding for having to pay out more money than they can afford for repairs, you would think that health insurance companies would be feeling the same effect! Although you have to realize that home insurance companies are paying people based on real and actual prices for goods to replace their home. Home insurance companies are not making contract deals with Ace, Lowes, and Home Depot to pay a cut rate for products! Home insurance companies don't restrict the retailers or repairmen you can use to get the products and repairs. BCBS is not the only bully in the school. All major health insurance carriers and HMOs do this. Hospitals are going broke because they have to mark up prices to cover the amount they lose from these insurance contracts, but the mark-up has reached a critical limit where people without health insurance coverage can't afford to pay to pay the difference. Where is the news expose looking at the difference in the business management of Health insurance and Home insurance? Where is the news magazine that show the public hwo health insurance companies are have increasing revenues even in this economy, while home-owner insurance companies continue to fold in areas of high claim rates?

Are you covered in soapy bubbles now? Sorry. Signing off now.