Naomi Wheeler (nee) Joyce is in her 30s, born north-west of Sydney, Australia. She was diagnosed with the rare auto-immune disorder, Mixed Connective Tissue Disease in January 2010 after first showing symptoms in October 2009. Naomi lives on the Central Coast and works in PR. Luckily her love of reading fiction, writing, public speaking and the films aren’t affected by her illness. She does wish she could still play basketball but Cest La Vie.

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35 Responses to “About Author”

  1. Brad Hutchison said

    Hello. When I met you in Sydney the other night, you inspired me enough to look up your blog. Keep up the good work, the world needs people like you 🙂

  2. Giraffe said

    Hi Naomi,

    My heartfelt prayer is for you to overcome this illness.
    I totally sympathize with you but with God, all things are possible.

    You can read more about my journey at:
    http://autoimmuneillness.blogspot.com/

    Hope you find peace and comfort,
    Giraffe xx

  3. bimpe said

    Hi Naomi, I live in London, am a 40 something black woman, i have recently being diagnosed with MCTD, Reading your biog during one of my flares actually has inspired me. I take the quinine based medication and have been taking it for about six months now does not seem to be helping me.

    I really love dancing and i think it is my weekend of dancing that has caused this flare, i an actually in despair does this mean i can not dance again. For me this weekend of dancing was very tame but i am paying for it now. But i know with God am going to see this true. Now am putting together my list of questions for my next rheumatologist appointment as i have been too overwhelmed to ask questions previously.

    Thanks and may the lord bless you

  4. I am currently battling for a diagnosis of MCTD. I have probably had it for the past 20 years and has included strokes, pulmnary embolisms, joint problems, facial palsy and muscular pain. At 43 I pray that I see a rheuma soon for a second opinion as my eyesight is deteriorating. Your blog I happened upon today has given me hope. Thank you from this once full of life girl from scotland.
    Yasemin.

  5. Thank you, will let you know how I get on.

  6. Alex said

    Hi Naomi,

    Your blog was certainly an interesting read! My symptoms started about 2 years ago now (I’m 33 y/o guy) and I am currently still walking through the fog holding my Rheumatologists hand (how gay does that sound! *laughs*)

    I will keep checking back every now and then, in the mean time best of luck to you!

    • Hi alex. Wow a guy…we don’t get many of them in mctd land. Sorry to hear you are also dealing with this. Where are you from? Keep on holding your rheumy’s hand…whatever gets you through. Naomi

      • Alex said

        Hi Naomi,

        I’ve done a lot of reading, and statistically 90% are usually women who get autoimmune issues, I guess I just lucked out 🙂

        I’m down in Melbourne (S/east)

        How are your symptom’s? I get a lot of pain in my fingers and wrists and both under arms along with a feeling of dry mouth every few weeks.

        Thankfully Plaquenil helps greatly, but it gives me uncomfortable abdominal pain .. however its worth it!

  7. Michelle said

    Hi, I also have MCTD. My symptoms began in Novemeber of 2009 and I was not diagnosed with MCTD until April 2011. I know that there is some dieases that will affect your pregnacies and sometime it is not ven possible to have children bc of the deiease. is this also the case with MCTD?

    • Hi Michelle,
      I’m not an expert on this by any means and you should speak to your rheumy about it as it is different for everyone. I know my rheumy spoke to me about it a while ago and said something about a hospital that works with women who are likely to have challenging pregnancies. I’m single and it’s not really an issue for me right now – not that is doesn’t play on my mind.

      Apparently for some people symptoms disappear during pregnancies, but for others they are in awful pain as they have to be off alot of their drugs.
      Also, there is a higher chance of miscarriage. I’m on methotrexate, which is very dangerous for pregnancies so it would mean discussing with my rheumy about what meds I could be on. Websites I read say you should wait til you’re in remission – but we know that isn’t always possible.

      Speak to your doctors and best of luck
      Naomi

  8. I just stumbled across your blog – your description of being in a hateful mood riding on the train had me in stitches! I am in the process of being diagnosed with an autoimmune disease (possibly MCTD). Keep up the blogging and I look forward to more posts.
    Sophie

    • All we can do is laugh at those moments (in hindsight) – thankfully I don’t have too many of those hateful moments. Hope your diagnosis happens really fast and you get on the right medication to have you leading a relatively normal life soon. Thanks for the comment.- Naomi

  9. I’m in British Columbia Canada. After two years of banging my head against Doctor walls, I saw a Pain Specialist. He took one look and it was “MCTD”, like he had seen it a thousand times before (sure he has).

    It all started with a sore finger. Now, hands, and feet, can’t wait for what’s next……………..not! It is nice to know I persevered and finally found someone that recognized it! At least I know what it is…………I’ll just add it to my special little list of long genetic ailments I seem to have come into this world with. Woot!

  10. mis73 said

    I just wanted to thank you for sharing your experiences. My 19 year old daughter has been diagnosed with MCTD after three years of guessing and many specialists. Now, I am reading pretty much anything I can get my hands on to learn about the disease. Ironically, I have Multiple Sclerosis, so while I can relate on some levels there are aspects of MCTD that are quite unique so I’m educating myself as best can to best help my daughter. Thank you!

  11. Meaghan said

    Hi Naomi,

    Thank you for sharing your experiences and fighting on.

    I was diagnosed with MCTD in 2006 and luckily only had the worst of it for four months – swelling and athritic feeling that migrated through my body. Somehow I found the strength to move cities (cortisol drugs helped) and live on my own during this time (it was madness). I found work in a bookstore where I could keep moving and avoid physically ‘setting’ in one position too long. Working there, over time I managed to dial back the medicine to zero and apart from a little MCTD physical warning in 2008 I have been mostly fine on my own.
    Gradually over time I did well, and moved to an office position within the business, and that lead to me moving to another office role elsewhere in another business (where I am now).

    I’m turning 30 this year. Right now, my left knee has been swollen for two weeks and tests have come back confirming MCTD is still there and flaring at the moment. Less arthritic and more swelling than pain. Back on the drugs to help push back the immune system. I’m not sure where it will go but I’m trying to stay optimistic.

    I found a great book while at the bookshop years ago called ‘When the Body Says No’ which has an interesting chapter on auto-immune disorders and the possible links to stress/worry. (Stress ‘possible’ in the last sentence). In short, the body doesn’t have very many avenues to communicate with us to let us know what is wrong. The book theorises (not me) that some illnesses are the body’s way of telling us what we need to do or not do. In my case I am sure I was doing too much and putting a lot of pressure on myself – I wasn’t grieving properly (bottled that up inside), I had just finished Uni and was a bag of stress. MCTD got me then. It physically slowed me down so I had to stop and think, and reassess what I was doing to myself.
    It isn’t a medical journal (likely not peer reviewed), and it will likely not apply to everyone. I’m not saying it is the same case for everyone – I don’t want to offend anyone! I’m not pushing the book either – it was just good food for thought and I got my money’s worth in terms of self appraisal, even if it didn’t affect what I was going through. It was healthy for me.
    I haven’t had a good chance to talk with anyone else with the same condition. It did make me look at how hard I was being on myself and get more positive where possible.

    Thank you for being optimistic and sharing your own experiences!

    I love to write and read fiction and I think that is a reflection on thinking ‘What If’ and following possibilities to wherever they can. That mental skill applied to myself and situations …. doesn’t keep things simple. I worry too much and I stress on things that I probably shouldn’t.

    I was wondering, if it isn’t too personal a question, how you are with stress and worry? Please don’t worry about answering. I am curious, but I imagine this journey is different for everyone.

    Thank you Naomi!

    Meaghan
    Melbourne, Australia

    • Hi Meaghan. Good to hear from you..there aren’t many MCTD sufferers in Australia and I haven’t come across many on here at all. I’m so glad you aren’t affected too badly. Thanks for the book recommendation too.

      Hmmm how do I handle stress? I don’t really know. Often I have a good cry then I get some clarity and keep going. I stay pretty positive. The funny thing is…when I got sick I wasnt stressed at all. Was close to finishing a long term job which had gotten easy and was looking to move overseas which I was excited about…not at all stressed. k.

  12. Alex said

    I would say many people are going through it undiagnosed, I know I went to many doctors before one diagnosed me with UCTD, thankfully plaquenil keeps it in check most days. 🙂

  13. Anne said

    My friend was just diagnosed with MCTD. What can I do to help her? And do you have any “fun” gift suggestions? I’ll be praying for you.

    • Hi Anne,

      Sorry to hear about your friend. Try not to offer any advice. Be willing to just hang out with her watching a movie if she is too tired or sore to go out. Let her know if she needs to vent about her pain, you will listen

      For gifts…hmmm MCTD related…interesting. depends where you live I suppose. A big sun hat and sunscreen….the sun is a nightmare for us. Best present I got for my MCTD was a foldable sun shelter for the beach! In a cold place….warm gloves and socks….for Raynaud’s Phenomenon. I love a gentle massage. And baths are great so epsom salts or any bath oils would be nice. Hope that helps.

  14. Sofia said

    Hi
    I found your blog while searching for experiences of getting off prednisolone.
    I have had a mild form of MCTD in almost 20 years. I am 41 now and have been on 2,5 mg prednisolone for almost 10 years and want to quit. I have a programme of taking half the dose on day a week for two weeks, then two days a week, three days a week and so on. Now I am taking 1,25 mg 6 days a week and 2,5 mg one day.
    And I am sooooo tired. I fall asleep in the sofa almost every night. I have a vague feeling of pain in the whole body, I know the feeling when you say you have pain in the bones.

    I hope my body will fix this. I desperatly want to quit prednisolone. If I make it to 1,25 mg all days I stay there for some weeks, but then I want to start taking it away too, or maybe split the tablets into 0,625 mg parts.
    How did you go from 2,5 mg, directly to 0?
    I hope there are a life for me without prednisolon. I don’t take mtx or plaquenil, but my reumathologist tells me plaquenil is an option. Do you have sideeffects from it?

    I live in Sweden and have two children born when I was ill, my body managed to keep them, after serveral miscarriages. My symptomes of MCTD is mostly inflammations in the sqin, morphea, Raynauds, fatigue and inflammations in some joints, fixed by cortisoneinjections. I can work full time, and I think I’m lucky to have a mild form of the disease.
    Best regards
    Sofia

    • Hi Sofia,

      thanks for your message. It’s been a long time since I came off the prednisone do I can’t remember what I said about coming off it but I can tell you I did not go from 2.5mg to half a mg. I remember that last mg being so so hard. I was so annoyed at myself because it seemed like such a small amount of medication.

      I can’t give you medical advice but I took it down half a mg I think every couple of weeks. The first few days were awful each time but by the 3rd day it eased. It feels great to be off it. No I haven’t had any side effects from Plaquenil…Well I’m extremely sensitive to sun but that could be any of the meds or MCTD itself. I’ll be going off methotrexate in a few months to try for a baby so I hope the Plaquenil is enough to see me through the daily pain.

      Best of luck and also…Thanks for giving me hope that you had two babies while living with this illness.

      Naomi

      • Sofia said

        Hi Naomi
        I really hope you will get pregnant and feel well when you’re off meds.
        I have managed to quit prednisolon now. Took the last one a few weeks ago. I’m feeling ok. Feel a bit swollen and tired, but hopeful. I’m not on any medication now, just adding extra omega-3, magnesium, zink and vitamine D.

        Sofia

  15. emezah said

    Naomi,

    My name is Elizabeth, I’m 26 years old, and am from the state of Wisconsin (US). I have fallen upon your blog after looking up alternative treatments for MCTD. After recent labs, it looks like I am being driven into the direction of an MCTD diagnosis. Needless to say, I am petrified. I’m looking to connect with others on this journey. It floors me how different each body handles this and how this disease handles each person. I pray to have a mild case, for whatever that entails…and really, doesn’t everyone? I have not yet met with a rheumatologist. I fear the lack of content and knowledge behind this disease. The fear is robbing me of myself and it’s not fair. I have a husband and three children ages 5, 4, and 4 months. How do you cope with what ifs and the stress baggage?

    Elizabeth

    • Hi Elizabeth,

      I’m sorry for your diagnosis…I was also 26 when I got MCTD. You WILL be ok. It’s very scary and unknown but you will adjust to life with a chronic illness and you will find the medication that will hopefully make it a less of a focus of your life.

      If you’re having trouble dealing with the diagnosis mentally, it might be worth seeing a counsellor.

      What honestly gets me through (apart from family, friends, meds and a great rheumy) is reminding myself that everyone has issues…often that we can’t see. And there are SO many people worse off than me. I still have my days of tears and loneliness but it helps me keep perspective too.

      Stay strong…and while it is a rare disease…you’ll be surprised how many people in the US actually have it that you may be able to connect with. And of course there are those of us scattered around the world too. Best of luck xx Naomi

  16. Steph said

    Hi,
    I am 26 years old white female and have been diagnosed with MCTD finally after a year of hell and getting am second opinion from the Cleveland Clinic, who have been wonderful and take all my concerns seriously. My husband and I have been talking about having children, and at the moment we have chosen to wait. It is a very hard decision and I’m praying for you to get pregnant. I just had a manometry esophageal test and endoscopy done and those did not turn out the way I had hoped for. Mine all started December 2015 when I was hospitalized for high heart rate and palpitations, found out I have hyperthyroidism and Graves’ disease. My symptoms of MCTD started 3 months after having my thyroid ablated. They started with Raynaud’s phenomenon, then the sausage fingers, then the fatigue and pretty much all the symptoms there are for this “lovely” disease. Now I have muscle damage in my legs more in my left, so I walk with a limp. I hate that I can’t do what other women my age can do. Thank god for my husband and my family they keep me going. I feel like I have to hide the pain sometimes because who wants to hear your in pain 24/7 and the pain meds hardly work. I’m so glad I found your blog and to know there are others out there going through the same thing. God bless everyone on their journey with this disease.

  17. Alex said

    I was diagnosed with MCTC 5 years ago, I luckily have it mildly and Plaquenil has been a wonder drug for me, without it I would be in agony (joint and muscle pain) .. I highly recommend to anyone with MCTC to take Fish oil, and where legal Cannabis oil (as an edible)

  18. lilybarlow said

    Hi Naomi,
    I’m a 30y/o living in Sydney with autoimmune disease and trying for kids this year too. My symptoms started 8months ago. I have been told I have mctd by one rheumy, but more likely rheumatoid arthritis by two others… I guess I’m still on the diagnostic path. I am yet to take any of the meds, as I’ve been trying to manage the pain with diet (AIP), probiotics, LDN and a few other things… none of which have helped. It’s likely I’ll start on the drugs path after my appt this Monday – I need something to work now, the pain is very difficult to live with. I worry about how this will affect my ability to have kids, of course.
    Anyway, I loved reading your blog and got excited when I saw you were in Sydney too. I’d love to exchange more with you if you’re up for me picking you brain.
    I hope you’re doing ok these days and truly wish you the best of luck with everything.
    Lily

  19. Martha Arnold said

    Just found your blog. I have been living with MCTD since I was 5 years old. I am now 49. It has got better as I’ve aged. It was terrible when I was a child and teen. I did not go on plaquenil until I was 30 because doctors were never sure what I had. I also struggled with infertility – endometriosis, ovarian cysts, and eventually conceived with IVF donor egg. I was diagnosed with primary ovarian insufficiency or poor ovarian reserve and was technically in menopause by 39. It’s tough. I know. People who don’t have this disease don’t understand. There is a connection between MCTD and infertility but doctors/scientists just haven’t figure out what it is yet. As my rheumatologist told me, there is great research being done in genetics and maybe one day they’ll be able to figure it all out. Sadly, it will probably not be in my life-time.
    Hang in there; I know how it is.

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