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.

About Tala

-Livestream Broadcaster - Active in Periscope & Busker -YouTube, Twitter, Instagram, & Facebook Pages Advocacy for better quality of life with catastrophic illness & injury. Conditions I live with myself are my awareness platform: rheumatic autoimmune & neurological, women's heart disease Traditional First Nations (Native American) -Training: Tai Ch'i Chuan, medical terminology, cultural Medicine -Avid about hiking, camping, & outdoor adventure Special Interests: Natural health, everything from East Indian to East Carolina cuisine, 16th Century German fencing Favorite Travel Spots: Yosemite, Catalina Island, E. North Carolina, Northern CA redwoods/coastal rainforest ~I live as naturally as I can, stay on a whole foods diet (as in what I eat, not as in "a diet"), avoid as many synthetic meds as I can, and do not consume artificial sweeteners and most preservatives. If you're curious about why, see my posts.~ Periscope/Twitter ID: Tala_NoExcuses

Posted on September 1, 2010, in I Am That Wolf. Bookmark the permalink. 7 Comments.

  1. Tala I can see how upset and frustrated you are, i understand, please let me know how the acupuncture work, and remember i told you of a cousin that works in kaiser, tell me in what city do you leave maybe she can help you, with a dr name or something…

  2. I had a decent appointment with my rheumatologist yesterday. I’ll post about that later. Acupuncture isn’t for almost 2 weeks yet but I’m sure it will help.

  3. Tala, I know and understand your frustration at the doctors and those who are supposed to be in this “illness” with us making insensitive comments. We go through enough with the doctors, our families, and even with ourselves, its an uphill battle to try to have someone understand you and your body. I too have trusted doctors and their rationale i mean they are doctors but over the years I’ve realized not everyone can graduate at the top of their class. I am on the Plaquenil and have had issues with my eyesight going out completely but not for long also blurred vision-it wasn’t until I complained of the new symptom that they said that I have to have eye exams frequently because it affects the optic nerves I wasn’t warned so at least you are making informed choices with your health and that alone deserves kudos – I am sorry that you were hurt – Please keep your head up keep smiling and drawing it keeps us sane :) I will keep praying your strength and knowledge that you find what you need & works for your betterment-

    • Hey, Tala !! Just wanted to see how you were doing. I’ve had no problem with the plaquenil other than I took it with Nexium for the first couple of months.
      I see you’re not posting on the support group and was concerned that you were not there. Have tried several ways to reach you. Let me know what you’re up to, your input is missed!! dc/TX

      • Yeahp… my email hasn’t changed though. Same one I signed up there with and I’m still reachable by it, as well as here. I wish I could say I was as confident as that about Plaquenil. I don’t really know if it’s only age or the med is adding to issues but I have to get my prescription checked again and… it hadn’t changed in MANY years. That worries me. I’m not interested in hearing that it’s the med, I have to tell you. I don’t want to have to stop… and I really don’t want to play russian roullette with other meds. *sigh* At any rate… I’m just busy with school. That takes a lot of energy.

  4. Hi Tala,

    Your story sounds like mine. I have terrible reactions to medicines. I was diagnosed with lupus in 1989 after 4 years of extremely ill health. During those four years I had received so many different diagnosis that I actually questioned my doctors about the validity of the final diagnosis of lupus. I then began investigating and researching natural ways to get well. My family doctor thought I was wacko and sent me to a psychiatrist hoping that he would get me to accept my lupus. He didn’t. He advised me to keep searching as others had found their way to wellness and so could I. He taught me to meditate in order to deal with my emotions and stress. What I’ve learned along the way is that you need to have a profound desire to be well because the natural route requires us to make major changes in our lives and yes, that means correcting our diets, removing all our bad habits, addressing our emotions and mental attitudes, and fighting for the health that we all deserve.

    You too will find your way through this and when you do you will discover that not everyone wants to get well. Many have conscious or unconscious reasons for staying sick. Sad but true. Follow your heart with this and seek out those who have recovered. Find an alternative care doctor to assist you through this. My present doctor believes that autoimmune diseases can be cured. He had me come to speak to his patients with lupus and only 30 percent were willing to make the necessary lifestyle changes. Stick with those individuals and you will be the winner.

    Speedy recovery!


    • I debated about approving this comment, but I’ll allow it… and reply to it at the same moment. If you think that I don’t understand the need for healthy living, including dietary choices and not indulging in bad habits, you might want to spend more time reading posts in my blog. You missed some things. I don’t know your age, but I’m 43 years old and have been studying and practicing healthy nutrition and natural health since I was 15 years old. I never developed the bad habits that a lot of people wander through in their youth. I have never smoked, and I have never experimented with drugs. I never felt the need. In addition, in spite of already having a very healthy lifestyle I made even more changes to improve on what I already had.

      I am an advanced Tai Ch’i student as well (of almost 20 yrs), and a traditional Native American with a strong spiritual belief system. I also however, grew up listening to some twisted philosphies about the “want to be sick” mindset and have grown up since then… and have gone on to have a more balanced set of views. I can appreciate that you’re looking to put a positive thought out there, however I must also state that sensitivity to individuals should be cautiously preserved. I have seen pressure placed on very sick people (and have been on the receiving end of that myself), as if it’s their fault that they are. It’s not an idea that I support or condone. I meet a lot of people that are unwilling to make changes for their quality of life. I tell them what they can do to fix it, and then it is their choice to do or not to do. I know they’re out there. There are just as many of us however that are doing all the right things, but we were dealt a bad hand in the genetic lottery. Fact.

      It’s just as possible that your Dr is wrong about autoimmune diseases, and is using disengenuous cases for his theory. There are many conditions that can masquerade as being one thing or another… including an AI disease. Misdiagnosis happens. So does failure to diagnose. So does remission. If someone is in remission, are they cured? No. How do you know if they’re cured or not if they go into remission and stay there for a few years? You don’t. Food for thought.

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