SWAPPIN’ AT THE DISEASE SWAP MEET

Photo Source: http://www.sandiego.com

I recently created a concept I refer to as the Disease Swap Meet.  It’s as simple as it sounds.  Pay a buck, get in, and find a stall with a disease you want to swap yours for.  Step right up.

I had a few things swirling in my mind and while I did coin this term, its origins come from two distinct concepts I crossed paths with since becoming sick in 2001.

One is the bargaining stage of the five stages of grief, originally reserved for terminally ill patients.  It is now used with the chronically ill, as well, and is officially known as the Kübler-Ross model.  In summary:

Characteristics of the Bargaining Stage

The bargaining stage is characterized by attempting to negotiate with a higher power or someone or something you feel, whether realistically or not, that has some control over the situation. You may make promises…in return for the painful situation not to occur or for things to go back to how they were before the loss or change, according to Kubler-Ross and David Kessler.

Article Source: http://www.livestrong.com/article/143100-the-bargaining-stage-grief/

Like many, I didn’t go through all the stages of the grief process and the ones I did go through—and continue to go through—occurred in no particular order.  Regardless, I was in the bargaining stage for about 8 years, although in my mind it was more of a swapping stage.  After one of my imaginary swaps happened to my beloved cat, I put this whole concept on the shelf for a while.  Superstition.

The other origin came from a TV show I saw years ago, which featured Michael J. Fox discussing his early-onset Parkinson’s disease.  A question I no longer recall elicited a response I’ve never forgotten.  He was saying something to the effect that when someone gets a disease, a familiarity with their illness develops—as if it becomes part of who you are.  He explained it further by providing an example.

He said—if I recall correctly—that if a big circle were drawn on the floor and everyone put their disease in the circle, but with the catch that they had to pick a disease from within the circle in exchange, they would take their own disease back because they knew how to deal with it.  Essentially, they would not swap out their disease; rather, they’d keep the one they had based on familiarity.  I watched him say this through every twitch, jerk, and tremor of Parkinson’s.  No way.  I wanted a swap.

I learned the five stages of grief and watched this show while carrying a diagnosis of severe fibromyalgia, although I would find out years later it was a misdiagnosis.  I got the misdiagnosis in Southern California, where I had ended up living with my mother and step-father in January of 2003 since I could no longer function in any capacity in Seattle.  I had been climbing the career ladder and was a full-time graduate student with honors when my health took a nosedive one day in the fall of 2001, when I was a mere 27 years old.

Southern California is the Mecca of swap meets and I did manage to go to a few as the hot, dry air near Palm Springs offered some relief to my pain.  They are strange places with strange people—mazes of stalls filled with drek and snake oil salesmen.  The Disease Swap Meet really isn’t too far-fetched in my mind.

The doctor who diagnosed me—a rheumatologist—seemed good and ran a lot of blood tests and ordered MRIs of my brain and spine.  My presenting symptoms at the time, which simply started one day and spread like wildfire, were severe, widespread musculoskeletal pain that made me vomit most of the day, large and painful knots within the muscles of my upper back, shoulders, neck, and jaw, joint pain in my hands and feet, numbness and tingling of the extremities, extreme weight loss, some lupus symptoms that were gone by then: malar rash and a positive ANA, episodes of hives and allergic-type rashes, severe hair loss, and chronic insomnia.

The diagnostic tests came back normal and since he didn’t focus on my joints and I hadn’t yet developed skin or corneal abnormalities, he diagnosed it as fibromyalgia—a junk diagnosis in my opinion—simply to give it a name.  From there, I was a fibromyalgic and devoted my time to learning all I could about this neurological disease and trying to figure out how to get rid of it.  I had just turned 29 and had a life to get back to.  What was the misdiagnosis exactly?

Fibromyalgia syndrome (FMS) produces chronic body-wide pain, which migrates and can be felt from head to toe. Other symptoms include persistent fatigue, headaches, cognitive or memory impairment, morning stiffness and non-restorative sleep. The pain can migrate from day to day. Recent scientific research studies have shown central nervous system involvement in FMS.

Article source: http://www.nfra.net

I can’t say it was a perfect fit for my symptoms.  My doctor also failed to tell me a few things back in April of 2003.  He didn’t tell me that in America, fibromyalgia is considered to be a psychological disease by most doctors and now that the general public has heard of it, they have jumped on the same bandwagon.  He didn’t tell me that when I moved to the city I live in now, I would have doctors refuse to take me as a patient or have people tell me to my face that I have a fad disease or that it can’t really be that bad.

I had no idea what this misdiagnosis would do to me emotionally over the next decade as a result of the stigma it carried.  I did know it was a neurological disease, just like Parkinson’s.  No one questioned Parkinson’s.  Why did they question me and treat me so poorly?

Then the anger came, especially as my body got worse and the few doctors who would treat me offered no answers.  I saw psychologists who found no evidence of any mental disease—I was simply mad as hell.  I would destroy the nasty condo I was renting and stuck in 24/7 due to my illness and inability to work.  After my rage, I was left to clean up the mess of broken glass and chairs thrown across the room and whatever else had been within my reach.  I punched the walls until my knuckles gave out.  Why did I bother?  No one cared about the sick girl with the make believe disease.  The entire world had abandoned me—a feeling I had known since I was a young child.

I wouldn’t even give my illness a name in due time.  I got so tired of the ignorant comments that I told people I had severe arthritis to shut them up.  I became a complete recluse and made sure no one could find me, especially online where people from my past could see how the 4.0 workaholic had to drop-out of grad school and was now living off disability and handouts in a motel by the airport in the crappy Southwest.  I still continue to live like someone in the Federal Witness Protection Program: hardly anyone knows my phone number or my e-mail and aside from a P.O. Box, I have no connection to my legal mailing address, except that I know the person who lives there.

I hated fibromyalgia.  I hated how my body betrayed me.  I hated my lost life.  I hated having a disease that people thought was all in my head.  I hated dividing my time between the doctors who threw medicine at me that did nothing or just threw me out of their office for having a disease they didn’t believe in.  I hated how horribly I was treated by my supervisors when I tried to keep working.  I hated that I no longer had friends or a social life.  I hated the monotony of doing nothing everyday.  I hated living with chronic pain and more and more symptoms that doctors just dismissed.  I hated my dysfunctional family and the fact that I had no support because of this disease and was just left to fend for myself, as usual.

This was no life and I wanted a swap.  I could care less about how intimately familiar I was with it and had no time for Michael J. Fox and his overflowing optimism.  I wouldn’t swap it for ALS, but if it were considered a real disease and I could be somewhat functional again, I’d take it.

Then, just 2 months ago, I got to go to the Disease Swap Meet for real.  It really does exist!  I finally got to swap diseases, but not in the traditional sense.  How so?  I got a correct diagnosis after 12 years of being sick.  Even if I ended up at the misdiagnosis stall—a swap is a swap.

If I hadn’t developed keratoconus and known how to do medical research, the stars wouldn’t have aligned and led me to the geneticist who diagnosed me with Ehlers-Danlos syndrome (EDS), which I’ve written about before.  EDS, says my geneticist who trained at Johns Hopkins—the best medical center for my disease—explains everything and why my symptoms no longer even vaguely fit the misdiagnosis I was given so long ago.  Good bye, fibromyalgia.  I won’t miss you.

Very quickly everything seemed to change, even though my symptoms were the same.  The Disease Swap Meet concept really worked!

First, there were the doctors.  The geneticist called two of them after the official diagnosis.  The rheumatologist, who had dismissed everything for years, was apparently very interested that EDS was behind my myriad of symptoms. He should have connected the dots due to his specialty.  No need to see him anymore!  My new PM&R doctor, who thought the fibromyalgia diagnosis was wrong when I met him and wanted to look into it, is familiar with EDS and has no problem continuing with my care.  Wonderful!  As a bonus, my great physical therapist, who helped start this journey by freaking out about my shoulder joints when I met her this summer, has some tricks up her sleeve to help my EDS symptoms.

Then there was the family, none of whom live near me.  After years of being discarded, yelled at, and told I needed an institution to deal with my psychological disease, they started to e-mail me inquiring about my eyes, which are still healing from cross-linking, and other specific health issues due to the EDS.  Quite interesting.

Is this what it feels like to have a disease that physicians and the general public believe is real?  Is this why people with Parkinson’s get the sympathy looks and I would get a lecture or worse?  What a great swap!  I’ve been sick for so long I no longer remember normal, so it’s good enough for me.

I started to notice my whole attitude was changing.  The anger was gone and this clarity and sense of peace came into my life. I’ve always been funny, but for years I hid behind my humor due to this experience and suddenly I was beginning to really laugh again, even if it’s at something funny I’ve said to myself or to my cat.  I’m also less worried about talking to people now.  This was always a fear because the first thing they ask is: what do you do?  How could I explain that I can’t work due to a disease no one thinks exists?

For 12 years I played the blame game: “If I just hadn’t taken that job in the sick building, I never would have gotten sick. I’d have finished graduate school and be running my own non-profit by now.”  That building was disgusting, but EDS is genetic—it’s in my DNA and no matter what I did, I would have gotten sick.  No one can blame me, not even me!  I was a ticking time bomb and that was that.  A weight was lifted off my shoulders knowing I couldn’t have prevented this.

The cloud of shame from the misdiagnosis was blowing away.

Now that I know that my body really is a degenerating mess due to a connective tissue disorder and I don’t just have a pain processing problem, I feel I have a wee bit of control—an issue I really struggled with due to the need for control in my life.

There are things I can do that give me some sense of control now.  I can clearly explain why things hurt and you can see a lot of my problems with MRIs and the like.  Proof!  I can exercise the right way and make my body strong which helps my muscles, as they are literally holding my joints together.  I can prevent injuries this way, like spontaneous pulled muscles and tendonosis.  I can also help stabilize my joints and heal the tendonosis by going to physical therapy and doing my exercises at home.  Amazing!

Aside from my semi-anonymous blog, no one can find me still, but I sort of feel like loaning out my picture as the face of Ehlers-Danlos syndrome, the disease I was lucky enough to get in a swap.  I think only someone who has been through this can understand my excitement or even why it makes sense.  After all, the disease process is no different and and my lost life is still gone forever—buried in a pile of lost lives that sits next to the dusty parking lot at the Disease Swap Meet.

Come on down.  2 for 1 tickets this weekend.

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9 thoughts on “SWAPPIN’ AT THE DISEASE SWAP MEET

  1. wellbeingdawn101 says:

    Can I have 3 tickets for the swap please!

    I think that really sucks how people treated your original diagnosis of fibromyalgia as a psych illness. I haven’t found that stigma, everyone who I have told about my FMS has been really supportive. It’s not a surprise you are so overjoyed at your recent diagnosis it must be as if a weight has been lifted off.

    Dawn

    • Hey Dawn,
      I have lots of tickets to sell! LOL. Thanks for reading my novel here and I so appreciate your thoughts . I thought of you as I wrote “my story” at last and was so worried it might come across as offensive to the FMS community–not my intention. Stigmas need to just go–whether it’s with my misdiagnosis, a mental disorder, or anything else that can’t be seen in a test.
      Take care! A

  2. dyspatient says:

    It’s a real pain to have a stigmatized illness as a diagnosis, whether it turns out to be right or wrong. I think it’s an extra big pain when it turns out it was wrong. It’s like “holy crap, why did you put me through that?!” I really liked this post. It made me think about the utility I’ve had from having a diagnosis (EDS) so far and it made me feel so much for you and what you’ve had to go through. I wish there were a way to be on disability and not 100% unemployed. I know there can’t be, not right now at least. It doesn’t work that way, the support is bad even at 100% from what I understand. Ok, I have to go be ill now but I wanted to drop in and comment on this.

  3. That’s sweet and thanks for sharing and I appreciate you dropping by! I try to write some posts that are health related but that do make people think. I think too much! It’s easy to lose perspective, especially when you’re in pain. I get all these weird tangents and try to pull them together into a post like this one–with my dry humor thrown in, of course. I kept that “clause” in my blog’s tagline in case I wanted to post on my other health issues (now mainly 1 issue–EDS). I didn’t want to talk about that before and really didn’t, but I’m glad I added that tagline because one thing led to another and I do need to get the EDS info out to the keratoconus group, since doctors don’t. Now I get the EDS hits on my blog–go figure! Of course, writing is always helpful whether it’s benefiting me or others. I just got to the point where my story had to come out, even if I omitted a lot. 12 yrs is a long time and there are some big things missing, but I was content enough.

    Regarding disability… Luckily I got SSDI & Medicare (not SSI & Medicaid) since I had worked since I was 14 and I won my case sans lawyer. Being in non-profit, I would never have thought I’d be living off disability one day and it took a long time to cash the 1st check since it looked like an old-school food stamp. I do direct deposit to avoid having to see it. That took a major adjustment as I was brought up to be an independent, career woman and to give back. Disability takes a piece of you that you never get back. Yet another stigma! I do get a handout that I mentioned. It’s from my step-father, even though we are estranged for the most part, so I do have some help with rent at the motel (2nd time here!), my bag of food for the week, and my enormous medical costs. All needs and no wants. C’est la vie. He’s the physician (retired) and while he didn’t believe in fibro, I believe there was something that told him I wasn’t making this up. He would always compliment my work-ethic and respected me for my strength and intelligence pre-illness, but it quickly faded when I got sick. Sad. I have always been very frugal (“saver-type”) who has done w/o, not that I grew up that way, so I can handle it. That’s what I meant about your personalty making you a survivor. It’s not for everyone. The hard life I lived made me one long before all this landed on my plate. It also helps to live in the ‘hood because everyone is in the same boat so you don’t feel like a loser–I just have good credit still. LOL!

    Btw, you can work a bit on SSDI, but you have to get the OK from SS and then you can only make a % of your check. So, hardly worth it. I’m just too sick to do anything, anyway. If someone paid me for my blog (sure!), which I usually work on at 4 am when I feel best and from the recliner in here w/down pillow behind the back, I could do that very part-time, but I can’t think of anything else. I tried working, volunteering, getting another degree, etc. for so long and couldn’t cut it. It’s OK–if I dwell on it, then I’m not playing my hand and go into depressing “why me?” land.

    I have an idea for a post that’s sort of a tangent of what you brought up. I was reminded of it today while sitting (owww) all day at the eye doc’s (again).

    TTYL and thanks again! 🙂

  4. cynthiablue says:

    That is so awesome you got a diagnosis! I mean, not awesome you have a disease, but you know what I mean. 🙂 I have Keratoconus too, as well as Mitral Valve Prolapse and Interstitial Cystitis. And now I’m wondering if there’s something behind all this that’s cause all these. And over the last couple years I’ve been having severe muscle and joint pain as well, mostly neck pain and upper back pain… going to the doc tomorrow, gonna ask if maybe these are connected somehow. Thanks for your post!

    • I got you–no worries! As I wrote in the post, the correct diagnosis is the next best thing to ditching this altogether! I am going to give you the same advice my CXL surgeon said when I told him I had researched the connective tissue disorders associated with keratoconus and how EDS explained a lot of my symptoms (I thought only 50% then). He listened to them and said, “Worth seeing a geneticist.” Please do bring this up with your doctor! You’ll need a referral and maybe a prior-authorization if you’re in the US. Not all doctors even know what EDS is, unfortunately.

      MVP and hypermobile joints are more common in females in general (and often benign), but I think you have to start connecting the dots at some point. You then add keratoconus, joint/muscle pain, who knows what else, and something might be going on. It’s the horses vs. zebras scenario or how doctors are trained to diagnose diseases.

      My worst pain is in my jaw (TMJ), neck, shoulders, and upper back–so similar there. It’s primarily all soft tissue and gets much worse with humidity or low pressure, furniture, bad sleep, overdoing my exercises, etc. My shoulder joints are falling out of the sockets as my tendons and ligaments are too stretched out to keep them in place, so my surrounding muscles are literally holding my body together (probably said that in the post). It’s so long I forgot!

      Please drop by and post an update if anything comes up. Would love to hear if you get a diagnosis at last, too.

      Hang in there and thanks again for sharing “your story.”

      A

  5. This is the post I would love to share with all doctors out there who shut their eyes. Odd but hey, CONGRATULATIONS on the diagnosis! My daughter is awaiting hers – although it is so “obvious” – and most physicians (for the moment) are treating us like crazies. I keep sending out pictures of her hyper mobility and other symptoms (blue legs). You should be “freshly pressed” for this. Seriously!

  6. Oh, you made my day Sheep (Little Lamb?) and thank you! You have my permission to take this to the doctors, but who would read it? I took photos of all my skin issues too (“spontaneous” black eyes, petechiae, etc.), but my former rheum. dismissed it all. I actually laugh when I’m editing my posts and I have no idea how I come up with these wacky concepts, but wouldn’t the swap meet be great? I see this long line to get in and everyone swapping stories while waiting. “Oh, let me tell you about MY story!” Ha ha. My writing can get so structured due to my educational background/A-Type personality, but I must have some creative streak lurking somewhere (my brother is an artist, so maybe that’s it). I think being a funny person helps (or talking to yourself non-stop since childhood). I sometimes wonder who will read a post over 2,000 words in this “Twitter World” that I don’t involve myself in?

    This post involved such an abstract concept to me: reprocessing a misdiagnosis (shortly after a misdiagnosis and then correct diagnosis of my associated corneal disease). I am very logical and need to explain the abstract, which I presume is how you operate due to your profession. I so hope that when this day comes for your daughter, that the weight will be lifted off her shoulders (and yours), too. So much of the bad is gone now, but the pain and disability remain the same, as I stated. It’s very odd, hence the odd post.

    This is funny… I noticed your post with that bizarre word for “first posts to create a great blog” or something along those lines. I literally couldn’t see the web when I started my blog in Aug. and tried to write what I could in Word (blown up to the max) and then my brother in L.A. put this together for me–design and all. I wanted a way to get info out about the CXL trial I would be in and presumed the blog would end soon after–guess not. Then I couldn’t write at all for nearly 2 mos post-op and although my “voice” came back as my vision returned somewhat, I sure hit the edit/update buttons a lot on the former posts! I’m hoping they disappear with time (so much babbling). I hadn’t even read blogs before come to think of it, which I use as an excuse to write long comments (that’s not normal?).

    Btw, I think YOU have some “Freshly Pressed” worthy posts–I should have “liked” them, but then I feel like those irritating people who like everything as if blogging were a competitive sport… I’ll do it next time! I read the FP section once in a while and was really unimpressed a couple weeks ago with a generic, typo-riddled post that I can’t stop thinking about for all the wrong reasons, mainly how horrible it was which is why I can’t really remember what it was about. What happened WordPress?

    I have you bookmarked so see you soon here, there, or on D’s blog! Take care… 🙂

    A

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