The next stage of my MCTD journey

April 28, 2016

Wow it’s been a long time since I’ve written. This is a good thing, it means I’m living life, not dwelling on my illness and I’ve been making MCTD such a small insignificant part of everything that I don’t feel I have anything to write about.

It is time to catch you up though. Since my last post in February last year, my boyfriend and I bought a house, moved 1.5 hours from Sydney, rescued ourselves a puppy, got engaged, got married….and today I sit here in my own home, with my wedding rings on, Biscuit the dog at my feet and my honeymoon now done and dusted and I can’t BELIEVE where I am or how I got here.

I feel very lucky – but at the same time very scared. I’m 32…coming up to 33 so of course, babies are on my radar. The question will no doubt be on everyone’s lips over the next couple of months but for us it’s not as simple as deciding to fall pregnant. First, I have to rid my body of the methotrexate – a drug that can be extremely harmful to unborn babies.

However I’ve been on this for so many years I don’t know what sort of pain I’m going to experience or if I will even be able to get out of bed. And that’s terrifying.

I do want to be honest here and say, I have ummed and ahhed over whether to write these next few posts because I have no doubt they will be revealing. Usually you don’t tell the world when you’re trying for a baby (which, hold your horses, we aren’t yet) but I looked at the title of my blog: MCTD: The Truth, The Challenge, The Hope and while I have been so lucky the last few years with less health challenges, now is a time of challenge and hope so I feel I need to be truthful.

Not simply because we live in an age of over-sharing, but because, I have done so much research on MCTD and pregnancy and there is SO LITTLE out there that I just feel I have to contribute. I don’t know if my story will be a positive and easy one, or a challenging one but when people with my illness, or Lupus, or other autoimmune conditions Google ‘Falling pregnant with MCTD (eg)’ they may just find a current, real story of someone who is going through it.

I am positive, I am hopeful and I am nervous.

Here’s to the next part of my journey.

Naomi

 

 

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13 Responses to “The next stage of my MCTD journey”

  1. Colin Brehaut said

    Well done Nomsie for posting. You have achieved so much. I look forward to reading the next few chapters of your life. You hold a lovely positive outlook on the future. Fingers crossed that all goes well. (Next time I’m over that way…look out! Lol x)

  2. Dianne Connell said

    Wow. You continue to amaze me. You are always so positive even though your pain is unbearable at times. Hope it all goes well for you both. Xxxx

  3. Shannon said

    Congratulations & good for you! Stay positive … we are not guaranteed anything in life, but if we live one day at a time & appreciate the blessings we have, I believe life is a little easier to handle. I have two boys, and while I wasn’t diagnosed with MCTD until my youngest was about 3, I have no doubt that I had it during my pregnancy with him, and possibly my pregnancy with both. I carried both boys to to 38 weeks, but know that at 38 weeks to the day in my second pregnancy I begged my doctor to induce me. There wasn’t anything earth shattering or any emergency, I just had a lot of belly/ligament & leg pain towards the end. I had pretty bad headaches throughout both pregnancies and was very tired in the last trimester. But I think any pregnant woman is!! Nothing that happened made me think “this is odd” or “somethings wrong with me”, but I was used to living with joint pain & physical limitations due to frequent headaches and fatigue. I had some problems post-delivery that I believe are absolutely related to MCTD, and part of what led to my diagnosis, but nothing that I wouldn’t do over again in a heartbeat to have these boys. They are amazing!! Best of luck to you as you start this new journey in your life, and don’t be afraid!! Everything will work out.

  4. jodiebodie said

    Hi Naomi,
    So many congratulations are in order! How exciting for you! Thanks for the update and the great news about your situation. I wish you many happy years together as a couple and as a family.
    I didn’t get my diagnosis until after I had 4 pregnancies and 3 children with mixed adventures.
    My first pregnancy was complicated by fulminating pre-eclampsia which was misdiagnosed because my symptoms were not behaving in a ‘typical’ way. I became severely ill very quickly but I had felt unwell and had warning signals which the doctors ignored. As a first time pregnant mother, the doctors wanted to dismiss my complaints as if I had no awareness of my own body. “How can you know it’s not normal if you haven’t been pregnant before?” So my advice to you is to follow your instincts and insist on follow up or a second opinion if something doesn’t feel right for you. You don’t want to end up in a life-threatening emergency like I did.
    My second pregnancy was totally normal and I felt great and, for the first time I could understand how women were able to be pregnant and still go to work without being utterly exhausted by 3 pm! It was very enjoyable.
    My third pregnancy was unlucky – lost at 20 weeks due to genetic abnormality.
    The last pregnancy was a combination of the first two. Generally well but with pre-eclampsia at the end but it was milder and later in the pregnancy. It was better because by then all the team were on the look-out for serious complications with me,
    I read years later that if lupus is active at conception the pregnancy is at risk of complications but if in remission at conception then the pregnancy should go normally. This may be something to discuss with your specialists for both MCTD and managing your pregnancy. It makes sense to me and is reflected in my experiences.
    Complications to watch for : kidney function which can be compromised with lupus and mctd. I am not sure of the connection between pre-eclampsia, eclampsia and mctd but I do know that kidney function and blood pressure affect each other and they are issues that arise with pre-eclampsia. A related, rarer complication is called HELLP syndrome which affects the liver as well. I don’t know whether MCTD and lupus increases the risks of these as well but forewarned is fore-armed. If your health care team are aware of your risks and on the look out to detect them early, you can have a successful pregnancy and feel more secure.
    I want you to know about these things so you can stay safe and well and enjoy pregnancy.
    Good luck with your meds. May everything go smoothly.
    All the best,
    Jodie

  5. Congrats!!! What a beautiful journey you have been on!

    Stay positive, I had my little one 11 months ago after nearly 10 years of being told I could not have any biological. They worried about Everything once I was pregnant. Wouldn’t you know I had a beautiful pregnancy!!!! Not without its hiccups but it was great in my eyes.

    So stay strong it is possible!

  6. Barbara said

    Hi Naomi,
    I am new to your blog. I came across it when I was searching MCTD. Your blog has been so helpful and informative. Congratulations on all the wonderful happenings in your life. I honestly think that with your positivity you will get through anything. I was on some heavy duty medicines for migraines when I found out I was pregnant. By the way it took me along time to get pregnant It was quite a surprise and even though I took myself off of the medication a couple of weeks before finding out the news .I was so worried about about having it affect my baby and everything turned out well. He is 24 now and doing well. All the best to you, and thanks for writing again as I just started reading these and was upset that you weren’t keeping it up.
    Barbara

  7. Cheryl French said

    Hi Naomi, my name is Cheryl and I Was diagnosed five years ago after a three year battle with tests and feeling like I was nutty. I live in a teeny town so I have no-one to talk to if I feel “funny” so I take comfort? In reading your posts. I guess we never know when it is going to flare, but I would love to hear that my ANA is now low and that remission is in there somewhere. Like you I excercise to the best of ability and get on with living. Thank you so much for sharing your life and good luck with the baby machine. Lol.

    • Sorry for my delayed response Cheryl, I’m so touched that my posts give you some comfort. We’re lucky, in some ways, to have the internet to be able to connect with people who are dealing with similar situations. Hoping your health isn’t too bad right now

  8. Heather Eleanor said

    Hi Naomi. I’m older than you, beyond the age when such autoimmune diseases are diagnosed. I’d never heard of MCTD until I was diagnosed last year after 2 years of misdiagnosis and a series of drs. I have regular flares, can’t work full time now. I react adversely to flu vaccinations. I’m on methotrexate. I wish you well and hope you’ll achieve your cream of having a family. This is such a rare condition, I haven’t found any support groups in NSW.

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