It’s been a very long time since I started my journey into medical madness. First stop: Menopause. Second stop: an underactive thyroid. Third stop: Hashimoto’s Thyroiditis (an auto immune disease) Fourth stop: Fibromyalgia. I was being treated for my underactive thyroid with Synthroid and more synthroid. Cymbalta was added on top of Prozac, intertwined with various other drugs for various other ailments. Then, a very long period of feeling like I had the flu without a temperature, no energy, no strength, every body part and his brother ached, all I wanted to do or was able to do, was pretty much, sleep. I felt and looked like hell.
That was about a year and a half ago until I was forced to see a specialist in NYC that dealt with joint diseases and auto-immune diseases only. That became the start of more medicine, but more hope. I had to keep a journal of how achy I was (yes) and how tired I was (still yes.) Then came Plaquannel, high doses of Vitamin D and after that, folic acid. After a few more months he added methotrexate and to contradict some of the really bad side effects of methotrexate he added Levocoir or something that sounds like that. That worked and it didn’t work, sometimes it worked and sometimes it didn’t. There was no rhyme or reason as to when it would work and when it would not. In addition, he had me see his colleague ( girlfriend) an OB-GYN, and start me on bio-identical hormones. I always swore, absolutely, positively swore I would NEVER , ever take HRT (Hormone Replacement Therapy. Again, I started rubbing the Estrogel in my arms every day. When does it stop? When do I stop?
Since I have not reacted most positively to all the drugs listed above, my guru Dr. wants to go to even stronger meds, including injectible ones. That’s right, injectable drugs, in my thigh, given by me, every day. From the diary he asks me to keep from one to ten, one being a mess and ten being (in my words)euphoric or on top of the world, I am at best a five. He is not happy with that number, he wants it to increase to an eight. I will never be a ten, with my auto-immune disease, but I should be higher than a five or sometimes a two. At least that’s what he says, my Guru Dr. Me? I’m not so sure.
How much though, is too much? How much more medicine to I want to take in my already overly medicated body. Why isn’t a five acceptable? Are these his standards, or mine? I am weary of taking stronger drugs and injecting them daily. For what? A higher quality of life? I have an acceptable quality of life and I am beginning to think that that’s enough for me. The name of the drug he wants to introduce by injection is Enbrel. Since I become hysterical at looking drugs up on Web MD, my husband always reads it first. For him to shake his head and say, “I’m not so sure about this one…..” is tantamount to me shrieking, feeling sick and fainting all at once. My husband is a calm man, I am not considered to be calm when it comes to medicine, illness or personal safety. I admit it. I worry.
Yes, I would like to feel better than I do but at what cost? Doctors often breezily refer to drugs with well known risks as if they were telling you to take a multi-vitamin. I am going to have to seriously think about the next step, although I’m pretty sure I know what I am going or NOT going to do. I don’t want more drugs in an already inundated body. I don’t want to inject a drug that has more negative side effects than it does worth. I’m sick of all of it, sick of feeling poorly, sick of taking drugs and sick of Dr.s and yes, sick of myself.
I can’t tell you what I am DEFINITELY going to do, I need much more information. Why is a five in a range from one to ten such a bad thing? What about the hidden side effects of all these different medicines? And, what about quality of life? Maybe being a ten is not for everyone, or a nine, even an eight. Now I am going to weigh all the risks and get more facts, but, for the meantime I will stay at five; and just be very grateful for that.
You have posted a very powerful blog about your journey. Quality of life is such a subjective idea/ideal, and I think you have presented a good case for deciding for one’s self what is acceptable, desirable and acheiveable. (don’t think I spelt that right)
I kept a pain diary, rating my pain on a scale of 1 to 10. Looking back on the process, the pain number would probably be the same as the quality of life scale. My doctor and I were working towards getting my pain level to 5 or less. As you know, often the less the pain, the more the life. I’ve been trying to take the power away from the pain and put it back in my hands.
The injections are a tough decision — would any of the side effects be lasting? In other words, would it be worth a try or is, to be cliche, the cure worse than the disease?
Keep us posted on your decision (and your vacation — hope good karma is/was at work!)
thank you, we are here! amazing how my body feels better here as well as my mental state and all….something to be said about the mind/body control, don’t you think?
not to mention weather…..and sun……as of now, i’ve decided no injections, not even going to think about it. glad you liked the blog, will try and keep them coming!!