Turning the page – and finding new MCTD symptoms

April 25, 2011

Do you have any idea how many times I have opened this page to write a new post over the last two months and how many times I have shut it again without a word on the page. And it certainly hasn’t been because I didn’t have anything to report, it also wasn’t because I didn’t have the time, it was because, I didn’t know which parts to share and how much to share.

So. Six weeks ago I quit my job. I won’t go into the reasons, that in itself deserves another whole blog, but I will categorically state that I did not leave the job because of health reasons. In the eleven months I worked there I did not take one day off sick and insisted that I did not let pain get in the way. Of course, although health is not the reason I quit, I definitely believe that my health can only improve with that stress removed from my life.

So I am job hunting. This is another reason I haven’t written, I think I have been trying to pretend I don’t have MCTD as I never know, with each interview I go for, whether I should reveal I have an auto-immune disorder.

With MCTD, it’s not like someone saying they have asthma or epilepsy as most people know someone who lives normally with those conditions, my illness is rare, unknown and this scares people. I don’t think people are so ignorant to think they can catch it but they don’t know what it involves and if it will affect my day to day work.

Sometimes I don’t know how it will affect me day to day but essentially, I don’t let it stop me working. Luckily in my field of work I sit in front of a computer and it is mostly brain work, I’m not out digging trenches, otherwise I would be in trouble!

I’ve been spending the last six weeks watching TV, reading novels, sitting in the park, taking walks, catching up with friends, job hunting, going on interviews, turning down job offers, being turned down for some roles, doing contract work and helping my Dad out. It has been….bliss. Not always, but all I have to do is remember that I am free and ready to choose my next step forward and I take a deep breath and….it’s bliss.

Unfortunately, I’ve had the joy of a new symptom. Now, bear with me, I am self diagnosing but I’m getting pretty good at this and as there is a long list of symptoms one can get with Mixed Connective Tissue Disease, as it is a combination of three illnesses, well it means I can get samples of symptoms from all over the place. The latest (I believe) is erythema nodosum, or red welts on the skin that are hard and hot (but not open like a sore, more like a mozzie bite that has swollen up) they aren’t itchy, some of them feel painful like a bruise and after a couple of days they go from being hot and red to purple and brown like a bruise and then remain like a bruise for a few weeks before totally disappearing.

So far I have been able to hide them quite well as they are on my thighs, backside and back, apart from two on the backs of my arms. But nothing like a revelation than putting them out on a blog! Apparently erythema nodosum are quite common with people who have Lupus (SLE or discoid) so I’m not surprised. I have a rheumy appointment on Friday so I’ll see what he can do about them.

Websites suggest corticoids and anti-inflammatories, but I’m already dosed up on those and they aren’t stopping them. Anyone else with MCTD or Lupus get these?

As the weather turns colder my Raynauds Phenomenon is definitely getting worse and I’ve already pulled out the gloves and thick socks…thank goodness I live in Sydney and compared to the rest of the world, we barely get a winter. Still, I’m already sick of numb fingers and toes.

I really think I need to try some yoga or Pilates, but honestly, I’m scared of looking like a total idiot when I can’t do the most simple of movements like lifting my arms… forget about the downward dog or whatever it’s called. Still, as dark sets in earlier, I’ll need an alternative to walking.

I’ll keep you all posted on the job hunt, and the erythema nodosum and anything exciting that pops up.

To the next step forward, new life, new job and hopefully no more new symptoms!

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3 Responses to “Turning the page – and finding new MCTD symptoms”

  1. Susana basanty said

    Hi Naomi
    I was wondering when you were going to post. I understand your not wanting to expose your MCTD when looking for work. Have you seen people’s mouth drop just at the mention of our condition and then our torpe apologetic dance afterward trying to downplay the devastating illness.
    Yep I have had the erythema nodosum, even the docs don’t quite know what to make of them and as usual resort to our trusted mind personality and mood altering cortisone. No thank you I will keep my annoying little bumps and my run down immune system thank you. I decided I am done with cortisone, it’s not worth the side effects and ravages on my mind and body.
    I like you, don’t mention a peep of my disease at work, it’s kind of like a death sentence and a sign of weakness to admit you have a combination of diseases that at any time can make you feel like shit.
    I had a small film shoot yesterday,after three hours of sleep due to a migraine and discomfort due to San Francisco wind and chill I was exhausted on the way home, but hey I was working with such a skilled crew I was elated. Dare I feel sorry for myself, never. There was a much older man with polio in a tremendous amount of pain who stuck it out, I felt so bad for him I decided to chat with him during our breaks. We have a devastating disease at times but there is always some who is worst off than we are and who deserves our help and compassion. Still that doesn’t diminish our pain and daily battle.
    I believe the stress of finding work brings on different aspects of the disease and while Pilates and Yoga intimidate me too, I decide to rent a DVD and try it at home first so I wouldn’t look like a total fool in the class.Lol!

  2. […] you realising it and when my rheumatologist told me recently I might need a biopsy on my recurring welts I’ll admit, I was a little scared. Mostly because I think I thought it was something […]

  3. kyraG said

    Hi,

    I stumbled across your blog and this post trying to find information on Erythema Nodosum and living life. I don’t have MCTD, Lupus etc. but I do have Crohn’s. I started noticing the oh so lovely red welts again 3.5 months ago after nearly a decade of absence and have been watching them cycle ever since. I keep thinking they’re resolving and then a new batch crops up.

    After seeing 5 docs, including my GI doc, without any help in a diagnosis and only offers of opiate pain killers I finally found an incredible dermatologist who wasn’t just able to confirm my thoughts but give me a bit of long term hope. She prescribed Potassium Iodide drops. No one seems to know how or why it helps, but it does for many. I’ve still got my welts but the inflammation’s noticeably decreased as well as the duration that they stick around.

    They’re on my lower legs/ ankles/ top of the feet/ between the toes and it’s killed what I used to think of as my yoga practice. I haven’t found anything saying yoga would possibly create more inflammation and irritation for the lumps so… I’m getting back to my first class to see how it goes today. Maybe I’ll end up just sitting, or lying on my mat, inevitably less flexible and strong then I was months ago, but I’m eager to get back into it. Mainly because when I’m on my mat I’m there for no one and no thing but myself. It’s the one place where I can consistently rest and work to my capacity without others’ judgment. I can barely stand, but I can still do yoga since it’s what happens within, not blindly following instruction, that makes yoga so powerful.

    … Well that quickly turned into a mini lecture without me meaning it to… but important info to have nonetheless. If you’d like to check out more on yoga/ how it has helped me with my auto-immune disease and just life in general you can check out my blog at http://journeyintoayurveda.wordpress.com/ I will also be posting how it feels to do yoga with erythema nodosum on my legs after today’s practice. *fingers crossed it goes well.*

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