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.

Tuesday, August 23, 2011

All in all...

Mom's CEA is down to 15! Yippee!! She's on a new med and is losing her hair this time, for real.

Things rocked along after wanting something done about that breast lump, and I forgot about it. Aunt Patty was diagnosed with Breast Cancer at the beginning of August. That got me to thinking again. Definitely larger when I felt it. I couldn't really find it in April, but now it is obviously there. So I went to Dr. Crowe, and he ordered an ultrasound. Here are the results:
  1. Radiologist said it was lymph node
  2. Angie Boyd said it was lymph node but looked large and mis-shapen. She also said that she would have a biopsy just for peace of mind.
  3. Crowe is in Africa. Always is when my family has a medical need, it seems. Mainly because my family is always having issues in August/September.
  4. Crowe's office called and repeated exactly what the radiologists report said.
  5. Uncle Terry and Aunt Marilyn, Rona, and Andy all say to have a biopsy.
  6. My insurance will not pay for a biopsy unless Crowe refers me to a surgeon. 
  7. Crowe, even though I haven't asked yet, won't refer me based on the results from the radiologist.
So why do I still want a biopsy? Because everyone else that has had a "spot" has had a biopsy! First time especially! Better safe than sorry! I seriously ignored symptoms the year before I was diagnosed with MS and refused to go to a neurologist at Crowe's suggestion. Now, I want more aggressive care, and I can't get it. My next mammogram is in October after the 26th. I'm still frustrated, and I still have that "feeling" in my gut.

My gut feeling may have had something to do with the tumor that is Andy though. It was a close call with this one. I considered surgically removing it. Decided that serious treatment was required. Things are better so far. We are trying. Both of us. It's actually an effort for both of us, but neither of us want to leave and we both love each other. Then we should work on it, and we are. Whole-heartedly!

Patty had her radical mastectomy today. I'm praying for her so much. I've seen how this looks after in photos. It has to be rough. I dont know much about her treatment plan either. They are pretty closed mouthed. I haven't called, and I am feeling guilty about it.

Paul is still not taking any treatment. He won't get a second opinion either. We are frustrated to say the least.

Rona's sister Rene was diagnosed with breast cancer two weeks ago. I haven't heard from Rona yet. I called and left a message but I know she needs space. I worry about her, and Rene.

Megan started her job at Dr. Stanfield's office. She loves it. I love that she is getting paid and can pay for her own things now. I'm freaking out about her turning 16 in a week!!! Plus it is weird that I am taking her to LBW in the morning and picking her up at work in the afternoon. I don't really see her at school. She doesn't work on Friday-Sunday. She thinks she doesn't have to do anything on the weekends. She just lays around and watches TV. But hey, I would too, if I could.

My newest love...much better than Pinterest! YouTube has great ideas, but Pinterest lets me pin my favorite ideas of EVERYTHING, including videos, from all over the web! Love it!

Sunday, June 5, 2011

The latest and greatest...

What's the latest and greatest?

  •  Mom's CEA (cancer marker blood count) is down to 20 from a high of 239!
  • Your weight is down! You have lost a total of 65 pounds in 2 years! Don't blow it now!
There are the low blows too...
The mammogram you had in April came back questionable. So you went for the second one. It was "probably benign". Yep, you didn't like that wording at the time either! You asked your doctor for a US, but the insurance wouldn't pay. So you have to wait for the 6 month anniversary of the 2nd mammo to have another compression  mammo! The pain in your left breast was awful! 2 weeks it hurt!

A cracked tooth left you with pain in the jaw for 2 weeks too!
Syd had a C in science. Which made you realize that you are NOT doing well in the supervision of school work in the evenings. And to make matters worse, it appears that Syd is a mini you. You were horrible about lying about stupid things and so is she. You wouldn't do homework or study and neither will she. The bright side is that you turned out ok. However, the scary part is that there were so many wrong turns that you took that could have ended so badly! You definitely don't want Syd making any of those bad decisions. Pray. Pray more. Then Pray even more.
Andy is still here. What does that mean? It means that after the 4 sons and a stupid incident, you still stick with him. Why? Because deep down you do love him. He makes you laugh. He is the best friend you have. He says he loves you. More importantly, the kids need him. You need him...financially and for taxi service. Does that mean you will stay with him forever? Yes, I love him. He would have to really screw up again.

Turning the corner...
Financially life still sucks. I don't know if we will ever have breathing room! I do hope so. How will we ever help the kids with school?

MS is fair. Today sucked, but you are really doing great. MAybe it is the weight loss. Maybe it is the fact that the Avonex gives you more days in the week that you feel good, that you actually can plan around, that you can now do more! No matter the reason, physically you are better. :-)

Nancy Matos is an AWESOME friend from YT. Hope she is still txtn and messaging the next time I stop by for an update...

Be you.