The Best Bad News

The best bad news you ever get is a Dr. stepping up and using the code 710.0 (or similar), because it usually means someone finally had the stones to say something you already knew for a long time. It sounds strange to be happy to get a grave sort of diagnosis, but if you’ve been through the catfights and screaming moments of frustration over being told you need a psychiatrist, or there is nothing wrong, or take a pain pill, or some deferred bullshit diagnosis that means nothing (*coughs* Preclinical Disease *coughcough* UCTD *cough*)… then you understand.

Am I relieved? Sure, in a way. Am I sad, kind of. Am I scared? No, not really. Nothing has changed except that some person decided to get with the program. Sad, only a touch because you really always hope that some Dr. will walk in and say “Well, Ms. So and So, you have Blahblahblee and if you take this pill for a few days, it will all go away.” Not really hope, just a nice fantasy. Secretly though, we all wish that a Dr. would DISprove to us that we have something incurable and say something truly encouraging instead. Right now I just kind of wish I still had access to the rheumatologist that showed me the most that he cared about me for real, and spent so much time with me trying to get me back pieces of my life. Instead I have to navigate a half-assed system paid for by half-assed insurance, which altogether makes for one big complete ass, I think. Peachy.

Where is Dr. House when you need him?

Wouldn’t it be nice to actually hear, “It’s not Lupus… it’s never Lupus.” and get another diagnosis that’s just easier to manage? You know, one of those stupidly simple things that the team overlooks through a bunch of other failed treatments and then they all go Oooohhh DUH and fix it? Our choices seem to be Lupus or Mystery Disease. Yay. I can definitely accept Lupus better than Mystery Disease though.

Now that it’s in black and white, even if the current Primary isn’t on board, his opinion really doesn’t make any difference. I’m thinking of laminating this piece of paper for posterity.


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 April 1, 2011, in I Am That Wolf and tagged , , , , , , . Bookmark the permalink. 2 Comments.

  1. Donna Niforos

    What is worse than having a chronic illness?…having a chronic illness that no one recognizes but you! That is what it is like having SLE before you a finally diagnosed. Being really physically ill, physiologically not psychololgically and having the medical field telling you time and time again that there is nothing wrong with you is worse than having a chronic illness. It even can make you doubt yourself sometimes because you have been made to feel like a hypochondriac or worse, a cyberchondriac, by doctor after doctor. Yet your body and mind keep screaming “I am really sick, I know I am. Why won’t you believe me and take me seriously?”

    Yet that is what it is like having an autoimmune disease like lupus. The symptoms persist for years. The pains rush in and ebb like the tides. Rashes come and go but deep inside you know you are really, really sick. There are days when you cannot get out of bed. Ah, you must be depressed is what the medical field would like you to believe. You are lazy, because that is what family and friends are beginning to whisper behind your back or shout at you as if that will make you get up and pull yourself together. Worse yet, I was told by my primary doctor that I needed to get a life, not in so many words, but the words he did say translated to you’ve been widowed so long you need a man. He might as well have said what he was thinking…you need to get laid! Embarrassed I left his office and I began to hear the doubts in my head and the pain in the rest of my body. Then one day you break out into a rash all over your back. Raised round circles erupt, pinching like you are being bitten by a spider as each one appears. Was this in my mind? Is the mirror lying to me? My primary proudly says it has nothing to do with my other symptoms for this is a fungal infection, it is ringworm and in no way related to the way I have been feeling for years. I am too exhausted to disagree so I comply and usee the antifungal cream, and I do it week after week after week. I do this until my primary finally has no choice but to recognize that his treatment isn’t working. And then I see that doctor who treats skin disorders, a dermatologist who exclaims,” I know what you don’t have, you don’t have ringworm”. I knew that, but my primary tnought he knew for sure it didn’t have anything to do with the depression I have been feeling because that was all in my head. And then finally the words come from the mouth of the dermatologist…”this looks like a lupus rash”. The blood tests and biopsy prove him right and the arrogant PCP is proven wrong. Now I am no longer crazy, no longer a lonely widow, no longer a hypochondriac. Now I am chronically ill. And somehow through all of this experience I have endured, I am happy I am physiologically ill because with a 3 letter acronym SLE, I am now a patient with a legitimate disease. And somewhere inside of me I am smiling because for the first time since all of this has started, there is a treatment. It won’t cure me for there is no cure for lupus. But I take my 160+ pills a week and I inject myself with a chemotherapy drug once a week. And then finally I am referred to the best rheumatologist ever who soon discovers it is rheumatoid arthritis eating away at my joints, it is connective tissue disease that shredded the tendons in my elbow. I finally have answers and knowledge empowers me. My confidence returns. I still have pain. I still sleep for hours on end only to feel exhausted anyway. But when my eyes open in the morning I am willing to take my pained body out of bed to start all over another day. I am not crazy, I am sick, but I knew that all along. Why did I need validation?

    • Validation.. funny. I don’t know. For the same reason that I wish some of my family members didn’t seem to need to see it on paper? That’s the impression I’ve been left with. You know how this goes too, as we all do. We know, we know it, we absolutely know it… and everyone has doubts, and questions, and looks at you sideways. Then one day it comes in the form of printed ink and you’re so sick of all the attitude about it that you really don’t give a damn anymore if they know or not. That’s what I’m feeling at the moment anyway.

      From the Dr of course it really isn’t so much a validation issues as it is a treatment issue. That starts with their sometimes nonexistent bedside manner and goes through to the medications we need. I’m fighting with one right now about dosage, and wish I’d just had the former rheumy write it up for the dosage I knew I might later need anyway. He’s all up in arms about “doubling my dosage” when I’m on an extremely subpar dose to begin with. I’m on 200mg, need to be on 400mg, would be on 600mg if they went by weight.. and he’s worried about me being on it at all. Nvm that Plaquenil has given me back a piece of my life! WTH. I’ve done my research, as you well know, and I’m positive there is no risk whatsoever of toxic retinopathy at this dosage. If it’s not one fight, it’s another. That’s the reason we need the Drs to be on board. If they aren’t, we suffer.

      I’ve bourne those labels too. Lazy. That’s my favorite one. I love love love my outdoor life… well, I did when I had one. I love camping, hiking, gardening, foraging, managing the habitat… the one I had. I miss it till my heart aches and I can’t think about it anymore it hurts so much. It was killing me though. Almost literally. If I had had the medical acknowledgement and treatment I needed THEN, I wouldn’t have had to give it up at all. That’s what it has cost me. If I’d known sooner there was something to stop this nightmarish cycle of horrors, I could be much further along with my education and so many other things. I might not have gone through so many years of degrading more and more on memory function and physical activity. Had they only listened. That… is what it has cost me. My world of favorite things. Skiiing. Skating. Walking in the woods. Digging in the soil. Tending wildlife.

      I’ve had some inexplicable rashes too… some that I considered could be fungal, but that kind of treatment did nothing to it. Just like the pain cycle, it did what it wanted to and laughed at my efforts to rid myself of it. Then it left when it wanted to. I can’t yet get anyone to recognize that issue. I suppose the next time something pops up I’ll have to push really hard to get someone to see me while it’s visible. I wonder how hard it would be to get a derm referral. *eye roll*

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )


Connecting to %s

%d bloggers like this: