This morning has not been stellar. When I got up, I took my Fosamax (which I had completely forgotten about) and had to wait 30 minutes to eat. My blood sugar dropped, so I started feeling weird. Then I had to rush to the bathroom (courtesy of Cyclosporin side effects). I tried writing on a crossword puzzle and my hands were shaking so much I couldn't write legibly. That could either be from the low blood sugar or the Cyclosporine; likely some combination of the two.
Then I choke at breakfast. I'm just like SO OVER all of this. I take 29 pills a day now. TWENTY NINE. Everything has side effects. I'm on insulin because I'm diabetic. I'm diabetic from all the steroids. I've been given huge doses of steroids and am on a steroid now because of the MG.
I have oesteoarthritis and osteoporosis from all the drugs I take. So I have to take Fosamax, Calcium, and Vitamin D in huge doses. Have to take Prilosec to protect my stomach from all the medication, but it's still on fire half the time the last 3 or 4 days.
I take CellCept, Prednisone and Cyclosporine to suppress my immune system. That means I could die from the common cold. The Cyclosporine gives me wicked charlie horses, and tremors. I've had the "shakes" for a while now, but the Cyclo. seems to have made them worse.
I take acidopholous so I don't get a yeast infection from all the drugs. Have to use medicated powder on my skin to prevent yeast on my skin. YUCK!
I take a handful of things at night to try and help me sleep because several of the prescriptions I take cause insomnia.
If I did not have MG, I would only take my multi-vitamin, anti-depressants and allergy pills.
Every day I take out my pill box and sigh as I swallow one. after. another. Oh my GOSH I'm so sick of it. I can't imagine all the crap in my bloodstream and how it's affecting other systems in my body. Many of the drugs are processed in my liver and kidneys. They can't last forever.
When do you stop? I'm not having pheresis right now, because it didn't seem to be doing much, but otherwise I'd be having all my blood sucked out of my body every 3 weeks as well. Without the pheresis, my cholesterol will go crazy high, and they'll want to put me on a statin (they've already broached the subject, but pheresis always fixed the problem, so they didn't push).
I'm not taking it. There are too many side effects (like weak muscles!) AND I can't take a statin with the cyclosporine anyway.
How much medication is too much? Do you go for quantity of life even if you're pickled and miserable? How much is one human, earthly, fallible body supposed to handle? Fifty years ago I'd already be dead. So just because we CAN, we keep going? Or is that what God intended? That medication is to be the be-all, end-all?
If I stopped taking everything....then what? I get so weak I can't do anything, can't breathe...I wouldn't just drop dead I would slowly suffer. But I'm suffering now. What a choice.
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8 comments:
Kerri, I am so sorry. It is really awful to have to take so many medications with so many side effects. It is a choice only you can make, and no one else has the right to tell you what to do. I think you said somewhere, that if this were 50 years ago, you would already be dead. I will tell you that Heavenly Father knows all things. He knew what you needed to live here upon the earth and fulfill whatever your mission is. He knows what you are going through. He knows, better than anyone, how very hard it is. I also believe that He is responsible for the strides that have been made in the medical field. I think, you have every right to talk to your doctors about what to stop, what side effects are too bad, and what you should keep doing. I believe, if you will just think about it, you will realize that even with all the downfalls of the medication and remember that you still have good days right now. They my be fewer and farther between, but they are there. Sometimes, the hardest thing we do is count the blessings that we do have. You are here and in this place to do something for Him that only you can do. That makes you pretty special! Hang in there. You are amazing.
All I can say is to pray about the whole situation. I literally cannot imagine what you are going through but I do hear the frustration in your writing. Maybe sitting down with your family and really talking this through and how you feel, then consulting your doctors - or possibly a different doctor - might find you some answers. I don't know - I am just throwing things out there wishing I had the "earthly" answer for you. I have "the" answer and that is faith in Jesus Christ. He definitely has the answer to your situation.
Kerri, I have just found your blog...I am 43 years old and have had MG since I was 15. I wasn't diagnosed until I was 16 by a Dr. at Chapel Hill Hosp. in NC. Just wanted you to know that I DO understand what you are going through. I HAVE been through it all. Have been on every drug there is for MG. EVERYTHING. Some of them several at a time. Thymectomy when I was 18~so, I feel your pain. At one point I was taking 52 pills/day...now, maybe 10...hang in there. Prayer was the ONLY way I made it. Cyclosporine was the worst!...got off that after a year or two of torture. I also participated in MANY drug trials since my teens with Duke and Chapel Hill...there are more things on the horizon for us! Hang in there and email me if you want. Cindy In NC
cbeasley68 at gmail dot com
Praying . . .
How I wish I could grab the magic wand and wave it like crazy to fix it. Praying for you.
Kerri,
I am so sorry. I beleive EVERYTHING Patty Ann said and I say it all too. Please try to think of your good days. When you feel like stopping everything, look at that little boy's face and keep fighting!
You are loved, Kerri. I see it in all the comments here; your husband's unflinching love and your son's belief in your ability to be his loving mom forever.
You are loved, Kerri. I see it in all the comments here; your husband's unflinching love and your son's belief in your ability to be his loving mom forever.
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