An overdue catch up on my MCTD status

September 27, 2013

I’m sorry. It’s been way too long since I’ve written and I’ve had a few people contact me asking me how I am as they haven’t been able to follow along at home by reading my blog. I know it’s been a long time. There are contributing factors. Laziness, is right up there.

But for the first half of the year, there was a lot going on with my family, that for me and I hope all of us, my MCTD became pushed aside and lost its importance and prevalence. Of course for me it was still there but I didn’t feel I had a right to talk about it when others were going through much worse. 

So, we’re almost in October 2013. It’s been a big year. I turned 30. My boyfriend and I moved in together and I got off the prednisolone. 

You might remember that prednisolone was my saving grace back in early 2010 when it got me moving again. When, about 6 hours after I took it I could stand without assistance and minimal pain, I could sleep without searing pain in my shoulders waking me up and I started to no longer see MCTD as a life sentence. 

I think it was because of this, that it was so hard to give up. While my rheumy told me that he never wanted me on it forever and that the plaquenil and methotrexate is meant to work without the need for prednisolone, I just couldn’t believe that I would function without it.

But slowly, so slowly, I eased down from the measly 5mg I was on, half a milligram at a time. I got stuck on 2.5 for ages. Every time I went down to 2 I had a flare and it just didn’t feel worth the pain to get off it. 

But then I knew, I wanted to be off it before my 30th birthday, so I persevered, dealt with regular pain and then one day, I stopped taking that last half and I was off it.

I do notice a difference. That original pain I got in my shoulders when I first got sick, returned and now wakes me up from time to time. It means I take more codeine to kill the pain than I used to but I try to only use it when the pain is really bad.

Yoga

And apparently, one way to make the pain really bad….is yoga.

For years, people have told me that yoga is something I should try that they think it would be good for me when there is so much exercise I can’t do. I pushed back, sure that holding my arms up and doing downward dog would be too hard on my wrists and I would be mortified when I couldn’t move from one position to another. But eventually, the opportunity arose to go with my sister to a small class where her friend, who I knew, was the instructor. I felt it was a safe space and I could tell the friend my limitations and just do what I could.

Well, I quite enjoyed it. Especially the meditation at the end, I didn’t lean on my wrists, just leaning on my fore-arms and with my sister by my side I just giggled with her when I was doing a pose totally wrong. I felt so thrilled when I finished and was so excited that I had been wrong and that maybe I was going to become a yoga queen.

Then, as night fell, the pain set in. Excruciating, un-escape-able pain in my shoulders. I threw down pain killers and my boyfriend tenderly rubbed my shoulders as much as I could bear but nothing would ease the pain.  Now for those who have done yoga, you might be tempted to tell me that after your first few sessions you too were in pain. Trust me. This is different. I had 26 years of knowing what pain after a workout feels like, it feels kind of good and rewarding. There was nothing good about this pain.

So the decision was made. I will not be doing yoga again.

Zumba and walking 

As bizarre as it sounds, while I can’t handle yoga, the high impact dance class of Zumba, I love. I think the reason is I can go as hard as I wish and modify the movements to suit me and there is no judgement, no-one telling you you’re doing it wrong. And the music is fun and I find myself alternating between laughing out loud at how ridiculous I feel and choking back tears that I’m doing real exercise that I enjoy and have fun with. When I’m too sore to Zumba….I try to walk, by getting off at the train station before hand and walking home. Exercise is part of my life again. Sporadically. 

Acupuncture

Another practice I have avoided since I got sick was acupuncture. I just didn’t want another appointment, another doctor cost, another thing that reminded me I was sick. But after giving up prednisolone and having MCTD for nearly 4 years, I thought it would be worth trying something that so many people swear by. There is a niggling pain in my wrist that is really bothering me so I wanted to see if it would, at the very least help that. 

So I went along last Monday for the first time and the acupuncturist came in and looked at my medical history and said with surprise “You have Mixed Connective Tissue Disease? My mother has that!” If I hadn’t been lying down ready to be stuck with pins I would have fell off my chair. I’ve never met anyone who directly knows anyone else with MCTD. Only my rheumy. 

So I felt instantly  more at ease with her as she had an understanding of the disease. I won’t go into details of how the appointment went. I enjoyed it for the most part and will be going back regularly to see if it makes a difference. 

Well, this week it certainly made a difference. It must stir up the toxins, or make things work differently because I’ve been in pain, felt light headed and just sick, all week. While this could be seen to turn me off, I’m curious. What did all these pins or needles or whatever, do to me to have that effect on me? And if she was able to pick up on specific problems with me by taking my pulse…maybe she can do something to fix those problems.

I’ll keep you posted.

Advertisements

2 Responses to “An overdue catch up on my MCTD status”

  1. Marleen said

    nice to read you again…getting off the predni is for me the same ‘one step back two forward’, I keep on 2.5mg as you…

    • heather said

      Hi Naomi,
      Hope 2015 finds you inremission.
      I also live in NSW. Have MCTD.
      Am 63, only diag. 3 yrs ago but on reflection have
      been sympomatic for 30 yrs. So this condition can
      just sneek up on you ,
      when you are young and busy , symptoms can be explained.
      When you read what others are going through you
      realise we all have the same condition , but are effected differently.
      More like having different bingo numbers but still all playing bingo,
      Reading about the prednisone tapering I have to agree
      it is difficult, I am trying to taper of , but not successful as yet.
      I cant put up with the great weight increase that also comes with it
      Take care
      Heather

Leave a Reply

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

WordPress.com Logo

You are commenting using your WordPress.com 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: