Trust the Doctors?
I’ve made the decision to try Plaquenil, for what it’s worth, to see if it helps me. After the short-course on Medrol, it became glaringly obvious that more than negligible various conditions, or even Fibromyalgia is going on (as if I didn‘t already know that). Virtually every plaguing symptom eased or almost went away, and now that I’ve tapered off of it I’m sliding back into pain, stiffness, brain fog, and more. I’m still seeking natural solutions – and I start acupuncture in 2 weeks – but in the interim, I need something that helps me function somewhere near a normal level.
In the light of all that, there are a few things that I really have to say. The first is that no matter what anybody else thinks, I will never agree that a synthesized pill is the best solution. It might be the best one that you’ve found, or the only one that anyone knows about, but that doesn’t make it better than something with less of a chance to cause other damage to your body – and ultimately, it always can. I appreciate the input of friends with genuine concern who have offered their personal experience in the matter, and the ones that have shared their knowledge about pros and cons. We cannot however ignore the fact that this medication is synthetic and chemical. That comes with risks and complications. Period. I still maintain that there is a better answer somewhere, and it just hasn’t been found yet. That always ends up being true. Sometimes it just takes a while to find out what it is.
Second, I got burned a little by a comment recently. I don’t know anywhere else to express my feelings about it without repercussion than here, so since it’s my blog, I AM. While I’m certain the speaker didn’t intend to cause harm, there was a lack of care behind the words that really hurt me. I was told that what I should do is put my trust in the Drs’ knowledge “just this once”, and stop doing their job for them. Something-something about “making them” do their job, and so on. Honestly, I had to reread it a few times to believe what was being said to me. To begin with, I have trusted them and possibly too many times. I trusted them when they said any number of NSAIDs wouldn’t upset my stomach, and found that even when taken with food and sitting up for a while they were wrong about that. I trusted them when they told me physical therapy was all I needed (several times) and refused me an MRI, xrays, or a cortisone injection. I trusted them when they never bothered to suggest any bloodwork to find out if this was more than a back injury going on. I trusted them when they gave me Vicodin… several times… till I finally had to put my foot down about the addiction factor and say NO MORE. I trusted them when they gave me inhalers, saying it was just obstruction and that would fix it – it didn’t. I trusted them when they said I have rosacea and Metrogel would make it better – it doesn’t. I trusted them when they gave me a Sulfa antibiotic… and said I would be fine. I’m allergic. So, where in all of this am I doing things wrong other than to allow them to run over me several times? I’m done with that. I dare anyone to criticize me for wanting to throttle the Drs over it too.
I also don’t see anyone offering any suggestions about how I’m supposed to make the Drs to their jobs. Anyone that knows anything about getting a diagnosis in this field knows that you go round and round, sometimes for years, while the Drs play games about what it is or isn’t, avoiding the one thing you really need – a diagnosis. To say that I should say to them “HELP ME” is about as ludicrous as it gets. I’ve been doing that for five long years to no avail. It isn’t my fault my care providers are idiots. To anyone that has continued to suggest that I should go off-provider, please stop. Unless you’re independently wealthy and offering to pay for it, just stop. I don’t have the money. It’s that simple.It must be nice for some people to have a normal, or close to normal tolerance for medications. I’ve never had that luxury. I react badly to so many of them that I basically refuse anything they suggest unless I’m going to die without it. If it improves the quality of life I have, then fabulous, but my experience has been that they all take away what little I have. No thanks. I’ve also been given the speech plenty about how “rare” retina damage is as a potential side effect for Plaquenil. If the statistic were 1 in 500,000, you wouldn’t really care if you were that one, would you? News flash, if I can’t see, I can’t draw. My eyesight is extremely important to me. I’m too young to take a risk of that nature without examining whether it’s worth it. I’ve read pages and pages of patient reports… personal assessments of this med… and I don’t find that changes in eyesight are all that damned rare. What I DO find, on the LFA (Lupus Foundation of America) site is that it is dose-related. There’s a prime example of something nobody knew before. Since I do know that, and know my personal tendency to hypersensitivities, I plan to insist on a low dosage. That doesn’t mean I won’t still happen to have an allergy, but let’s all pray that I don’t. That’s my hope. Tolerance. That’s all I need… just ONE med that I can tolerate.
I’m not giving up on the idea that there may be a natural solution. I just can’t deal with the pain and dysfunction I’ve been living with and find it at the same time. If anyone else wants to just take pills and not worry about it, that’s your choice too. I’ll do what I have to do.