Chris is an amazingly funny woman who shares her struggles with chronic illness on her blog, PixieCD.com. I found her via twitter and really wanted to share her with you. I know you will enjoy her liveliness and sense of humor as much as I do. She is a real inspiration to always keep your sense of humor and look about you for something to laugh at – I promise it’s there.
When were you diagnosed? How old were you at the time?
I was diagnosed in 2012 when I was 41. I’m kinda odd, in that Fibro is my secondary diagnosis, so that part didn’t come until several months later.
Sadly, the Rheumy who initially diagnosed me ended up using Fibro as a “catch-all” for any symptoms that didn’t neatly fit into the category of Scleroderma, what she’d already (wrongly) told me was the root of my health issues.
You mentioned that Fibro is your secondary diagnosis, what is your first?
My current primary is Undifferentiated Connective tissue Disease. It’s changed so often since this all started, it’s not even funny! Basically, I have a positive ANA and other markers that show there’s an autoimmune wreaking havoc on my connective tissue (in my case, muscles) but there’s not enough symptoms of any one disease to narrow it down. Most of us kinda feel like it’s a diagnosis comparable to Limbo.
My current primary is Undifferentiated Connective tissue Disease. It’s changed so often since this all started, it’s not even funny! Basically, I have a positive ANA and other markers that show there’s an autoimmune wreaking havoc on my connective tissue (in my case, muscles) but there’s not enough symptoms of any one disease to narrow it down. Most of us kinda feel like it’s a diagnosis comparable to Limbo.
So, is the UCtD the root of your health issues, what’s the deal with the Scleroderma?
It’s the UCtD. In my case, I have the same ANA (positive with a nuclear pattern) as Sclero. She just didn’t look any deeper, even though a lot of my symptoms didn’t exactly line up. Honestly? I know three oter women who were originally diagnosed with Sclero and later re-diagnosed with either undifferentiated connective tissue disease or mixed connective tissue disease. According to my Rheumy, you have to check for deeper blood markers than just the ANA.
It’s the UCtD. In my case, I have the same ANA (positive with a nuclear pattern) as Sclero. She just didn’t look any deeper, even though a lot of my symptoms didn’t exactly line up. Honestly? I know three oter women who were originally diagnosed with Sclero and later re-diagnosed with either undifferentiated connective tissue disease or mixed connective tissue disease. According to my Rheumy, you have to check for deeper blood markers than just the ANA.
What led up to your diagnosis (symptoms, Dr visits, etc)?
WOW! That’s something of a long list! Initially, I’d gone in for dental work. (A LOT of dental work!) After that, my health issues just blew straight the fudge nuggets up. (Which I’ve since learned is fairly common for a lot of folks with auto immunes and Dysautonomia.)
Next, my gall bladder stopped working. Not stones, it just stopped squeezing. So out it came and, fingers crossed, an end to the problems. Only not so much.
Then the phantom pains started. And the severe fatigue, vertigo, muscle weakness, and too many other bits of random weirdness to count.
My GP was convinced I was a textbook case of Multiple Sclerosis, only MRI’s showed no lesions. So…Rheumy #1 said I wasn’t sick, I just needed a psychiatrist. Rheumy #2 said I had an irreversible compressed nerve in my vertebra and needed a pain Doc.
Which led to a second opinion with a Neuro Surgeon who said I needed a new Rheumy and after looking at copies of my million and one blood tests, dropped the word “Scleroderma”.
Rheumy #3 confirmed the Surgeon’s suspicions about Sclero, but since that didn’t account for the phantom pains, fatigue, and muscle weakness, added Fibro.
Rheumy #4 did more blood work (a LOT more blood work) and changed it up, yet again, to Undifferentiated Connective Tissue Disease with POSSIBLE Fibro. *sigh* (Which basically translates to I have an auto immune disease that’s affecting my muscles, but my symptoms don’t fit neatly into any one auto immune and the ever present random pains and fatigue are probably Fibro related.)
Were you working at the time?
Dude! For the first time in my friggin’ life, I had a job I LOVED! And I was darn good at it too!
I worked in a factory as a Team Leader (basically lower management) where I not only got to run machinery, but I got to monkey all over the machines while fixing problems, teach others how to run the machines, learned something cool every last day, AND got to work with my Hubby to boot! Dream? Come true.
What was your family life like (married? kids? etc?) I am/was married with four Offspring (current ages 19-23). When I first got sick, all four were living at home. My Middle Son moved out before I was actually diagnosed.
We home schooled all the kids and we raised chickens, ducks, geese, and one turkey. Oh, and cats (I refuse to actually count how many) and two dogs.
How did your family initially handle your illness?
I have been one seriously lucky chick in this area! None of them ever thought I was faking or exaggerating. Ever! (Sadly, I’ve met too many people whose families have. *sad sigh*)
It got to the point that if I wasn’t at work, I was sleeping. The Offspring helped pick up the slack with the bird work, cleaning, and laundry and Hubby took over most of the cooking.
My daughter (now 20) and I are very close, so she ended up reading every book I did and we’d discuss our thoughts and feeling about what meds I was currently being given, Doc appointments, and anything else that made me want to bang my head against a wall.
Fortunately, my family has just as twisted a sense of humor as I do, so every last family member helped me cope by teasing the crap outta me over the brain fog, malfunctioning muscles (I drop EVERYTHING!) and the funky way I walk (and occasionally fall over).
For me this was the best way EVER to deal with all the crazy and scary stuff that bothered us…we laughed it out into the open where we could then discuss it.
[Tweet “My family helps me cope by teasing me about the brain fog. @PixieCD”]
[Tweet “My family helps me cope by teasing me about the brain fog. @PixieCD”]
How has your family/work situation changed since Fibromyalgia entered your life?
December 23, 2011 was my last day of work. I simply couldn’t keep up and my right leg had reached the point of purely decoration. (I was told by the company Nurse that if I couldn’t walk unassisted, I couldn’t work, so no cane.) My Hubby was really the one who pushed for me to quit. Like I said, if I wasn’t at work, I was asleep.
Since then, we’ve gotten rid of much of our bird population and I’ve had to find new hobbies that play nicer with my new body limits.
The Offspring have been BEYOND awesome in continuing to carry a lot of the work load around here.
So besides writing, obviously, what new hobbies have you found the play nicer with your body limits?
I used to knit, spin, crochet, paint, and carve. Now, thanks to the joys of carpal tunal, yet another gift of my autoimmune beastie, I can’t do much of any of them. I can cross stitch with my wrist braces on, so at least I didn’t lose that.*grin*
Plus, I’ve discovered the joys of cell phone photography! I’ve downloaded probably a dozen different editing apps, most of them free, and I can get my creativity on that way!It actually works great with the mindset I had to develop when I got sick; it’s all about perception. And to be able to let others see things the way I do by tweaking pics? Works great!
What do you feel is the most challenging aspect of Fibro?
Extreme fatigue, memory glitches, and pointless, non-stop, random pain. As if the first two weren’t bad enough? Seriously, whose idea of a joke is this anyway!?!
Extreme fatigue, memory glitches, and pointless, non-stop, random pain. As if the first two weren’t bad enough? Seriously, whose idea of a joke is this anyway!?!
Ya know, a body can always find ways around one or two problems, but when you pile on the pain part of the equation? It just kinda pushes you over the, “Are you flippin’ kidding me!?!” line.
Scratch that…the worst part is the blank, disbelieving stares and/or eye-rolling from friends and extended family who think Fibro is an excuse to lounge on the couch and watch TV all day. You know what I mean, the “Fibro isn’t real” crowd?
Please don’t hate me, but I was always on the fence over whether I believed it was a “real” disease or not. (Karma’s got a wicked sense of humor, doesn’t she. *grin*) But I’m a research junkie, so I read everything I could possibly get my grubby hands on (my fave is still “Fibromyalgia: The Final Chapter” by Don L Goldenberg MD) and talked to other people (on line) who had Fibro. Let’s just say I am definitely no longer on the fence.
Do you have any other co-existing conditions? If so, what are they and how do they impact Fibromyalgia?
Yeah, I probably already covered this in the book I wrote for the second question. *grin* But…
Did you know the average amount of time it takes to diagnose an auto immune disease is 4.5 years? I’m either ahead of the curve or not properly diagnosed. Or both.
My current Rheumy has me down as Undifferentiated Connective Tissue Disease with possible Fibro. At this point, he’s not sure how much of my muscle pain and fatigue is from the auto immune and what’s Fibro.
Although recently there’s been some concern (mostly on my part) that Dysautonomia (a malfunctioning of the autonomic nervous system) may be playing more of a role in my health problems than the UCTD. (And yes, researchers now know that Fibro and Chronic Fatigue Syndrome are types of Dysautonomia.)
So, it looks like another ride on the Medical-Go-Round is in my near future. *sigh*
What (if anything) have you found/done that has improved your symptoms?
Honestly? A Facebook friend asked me to take one week and start my day with a “Today I love…” status. Even if it’s only, “Today I love that the Sun rose, I’m awake, and I have pain meds!” it’s starting the day by focusing on the positives in my life. That one week has turned into more than a year now.
Also, I find ways to laugh at the crazy things my body does. Even if I’m laughing at the fact I couldn’t walk a straight line if my life depended on it. Laughter may not be the best medicine, but it sure as hecky helps!
Although, I’m not sure if this really improves my symptoms so much as puts them in a more tolerable light…
What is the best advice you’ve received regarding Fibromyalgia?
Listen to your body and respect its limits. If I push myself too hard, my bod pushes back and I pay. (Man, do I pay!)
What made you want to blog about your health issues?
I started blogging when I didn’t have any clue what was wrong with me. I live in a fairly small town and have never had much of a social life, so there really weren’t (and still aren’t) any “chronic illness” support groups. Everything out there is disease specific. So I turned to the interwebz and…found more of the same.
No Medical Mystery Clubs, no What The Living Heck Is Wrong With Me!?! pages, just disease specific. I knew I couldn’t be the only one feeling lost, alone, and scared crapless while I was hanging out in Medical Limbo.
So I figured, why not? If I could help at least one other person feel less alone, less exposed as they navigated this mine field, it’d be worth it. (And it totally has been!)
What was the worst advice you followed?
Allowing myself to believe I could navigate this without pain meds.
Look, I know that a lot of the meds aren’t that great on the ole internal organs and such. BUT, I also know that there are some I truly do need to function on any level. Sadly, for me pain meds fall into that category.
There are quite a few folks (illin’ and otherwise) who preach a zero pain meds philosophy. The only thing you can say to them is they don’t live in your skin. I’m all like, “Yeah, I’m glad that works for you! But my Doc and I work closely with what meds I take and for me, these are what’s needed.”
What is one thing you’ve learned about yourself since your diagnosis?
I am my own best advocate! I alone truly know what is and isn’t right/ wrong/ best/ detrimental for me.
I do a lot of research any time I’m given a new diagnosis or a med change. I ask a LOT of questions. (I have a notebook I write them down in and take with me to appointments.) I know my rights and responsibilities as a patient and, as long as I’m holding up my end of the bargain, I expect the Doc to hold up his.
I keep copies of all my test results so if I’m at a different Doc’s office, I can share what’s already been done and when. It REALLY cuts down on a lot of time waiting for someone to send someone else info.
I do my best to approach it all with a sense of humor, but if I feel like I’m being blown off or treated like a hypochondriac, I find a new Doc. Simple as that!
Wait…what was I talking about again? Oh yeah…I guess it all adds up to I’ve learned to stand up for myself and that I can be stronger than I thought I could. *grin*
[Tweet “I do my best to approach my health issues with a sense of humor. @PixieCD”]
[Tweet “I do my best to approach my health issues with a sense of humor. @PixieCD”]
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