They Tell Me I Don’t Have Lupus

They tell me I don’t have Lupus. They also won’t tell me what I do have that causes me so much distress, and gave me a few trite labels and some pills to go away. If I’m not sick, why do is everything ordinary so difficult for me?

I can remember as a young person being unwell so much of the time that I missed almost as much schooling as I got. Even when I was there I couldn’t really absorb what I needed to, and the system in those days was not designed to accommodate special needs unless you were REALLY special needs and had to be in a special class or held back. They didn’t really recognize learning disabilities and emotional issues in the same light that they do now. No one ever considered something like social anxiety or panic disorder, just dyslexia and I didn’t quite fit the profile. First it was my hearing under suspicion so I had a hearing test. No problems. Then it was eventually my eyes so I got glasses. That solved one problem – not being able to see the blackboard. It did not however adjust the attitudes of my tormenting classmates and arrogant teachers. The entire environment did more to tear me down as an individual than build me up as I believe an educating institute is supposed to. It wasn’t at all understood why I couldn’t run and play like other children because my ankles and feet hurt and I was exhausted physically. No one had a clue that the heat and the sun did terrible things to my energy levels and aggravated my sensitive digestive system, or that the food in the cafeteria might not be good for me. Nobody considered that the milk I was drinking could be the source of any of it either.

I got labeled so many things. Crybaby. Sensitive. Stubborn. Lazy. Rebellious. I have to ask the question… who would have a good attitude if they felt ill and were being teased and called names? I’ll cop to stubborn happily if it keeps me alive. I’ll claim sensitive all day long because I’d rather be that than a cold-hearted brute. Calling me a crybaby was just childish stupidity on the part of most of my classmates, considering they had no idea how bad I felt or why I didn’t want to be there. Shame on their parents for not teaching them better manners. I don’t care how young you are, no one has to be an ass. If there’s one thing I have never been however, it’s lazy. I have always loved the outdoors and activities. I have adored camping since I was too little to hike the trails myself and was being toted around Yosemite in a child-carrier backpack by my dad. I love to garden, I used to be a dancer (both ballroom and theatrical), and I was very fit when I was in my late teens and early twenties before the pain became an unwavering companion in my life. I posted a commentary about this issue on a site recently and someone picked out one phrase that they loved, which was, “When I can, I do.” Sometimes, I just can’t.

Sadly, the ones we look to for understanding are often not the best source. I am a member of a very large online support group for people with Lupus, those waiting for a diagnosis, and their supportive family & friends. More often than not, I see the same story reflected over and over of a family not grasping how difficult it is to be chronically ill and disbelieving there is anything truly wrong. As if it’s not enough that we have to deal with Drs that tell us we need to see a psychiatrist or read more books to improve memory function, and tell us they won’t run a test or prescribe a med that might help. We also have to face relatives and loved ones that tell us to get out and walk more, or get off those meds, or what we need is to eat less or take some vitamin, or think positively to cure all our ills. I can think of a handful of ladies I know that would love to take that walk if they wouldn’t collapse before they made it back into the house. I can think of about 2000 of them that would love a med-free life if it meant they could survive it. Every one of them would like a better quality of life if there were a simple solution. Doesn’t anyone ever consider that if it were as simple as that, we’d all already be doing it and not be going through all of this?! For the record, there are no miracle cures in a bottle for Lupus either, so don’t go there.

I am told that because I have an HMO, and my labs aren’t textbook perfect, I will never get a sensible diagnosis. For me that means I can’t get one at all because I can’t afford out of pocket expenses. Basically, I’m screwed. Mind you, I’ve arbitrarily placed myself on an anti-inflammatory diet and it does help. I also have a rheumatologist with a great personality, a sense of humor to keep up with my own, and good professional demeanor. He’s highly intelligent, well-educated, and tied by the throat by the HMO he works for so he’s not going to give it to me either. He did offer me Plaquenil but the side-effects scared the hell out of me. I think unless I go critical again I won’t be taking that, thanks. You have to decided as an individual which is the lesser of two evils. I look at it this way… Plaquenil slows the progression of SLE but he says I don’t have SLE. If it progresses later and he’s wrong, then I guess it’s his ass I’ll be chewing out for failure to diagnose, right? Maybe I’ll be fortunate enough to stay manageable, who knows. In the mean time, I have new labels. Osteoarthritis. Rosacea. Preclinical Disease. Degenerative Disc Disease.

Check that third one and tell me what you think it means. Looks to me like someone sees a real problem but is afraid to tell it like it is.

While we’re playing at this little dance, nobody at all has an explanation for my mysterious development of photosensitivity either. It’s supposed to be rosacea on my face but then why do even my arms fry like a trout after 2 minutes in the sun? Why do I itch and feel exhausted from heat and sun exposure? Why do high temps send me running for an air conditioned environment because I’m shaking, in a cold sweat, and in severe digestive cramps? Why am I so sensitive to so many meds that I can’t take most of what they throw at me? Why am I having so many problems with my memory and comprehension at my age? Why do my hands hurt when it isn’t even cold? Why does cold make them ache so bad I want to cry? Why any of it?

There is no answer. All the HMO wants is precision. I’m a number not a human to them. I’m just trying to get my quality of life back as best I can. It’s a shame there isn’t a real physician for me that wants to do what their oath states. I’m stuck managing it myself as best I can. Mine is not a unique story. Chances are, someone you know has Lupus…



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 August 5, 2010, in General Blather, I Am That Wolf and tagged , , , , , , , . Bookmark the permalink. 2 Comments.

  1. Well said, Tala. I’m proud of you for venturing into the blogosphere. Especially about our common issues. I thought my family had accepted my lupus, but my son said the other day, “I think you need to get off that medicine, it doesn’t seem to be helping you.” Sigh. I hope tons of people read your blog and get even a glimmer of what it’s like to be a lupie — or not. Your struggle with your symptoms sounds so familiar, it’s outrageous that you can’t get a diagnosis. A proper diagnosis, I should say.
    Keep on blogging. You never know how your life can affect others. ( Oh, and I hope you understand about my not using IM. I’m usually working on the computer and can’t carry on a decent conversation at that time. It’s not you. It’s anybody, lol. Marilyn

    • :-D I’m so glad to see you here. You’re the one that really inspired me to do this, though I didn’t mention it. I saw yours and kept thinking about it, and thinking about it, and then I fell over the edge ’cause I was hanging around there so much. lol I’ve been writing since I was really young, and have had various memberships on BBSes (that dates me!) and web groups over the years, but those groups never really lend themselves to what I wanted to do. Some people just don’t like reading long posts on a group site – even if you’re the admin, they can get cranky at times. I figure if you came here, you deserve what you get. hahaha TY for being my first commentor. ;-)

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: