1976 – Had apthous ulcers, cause unknown. Canker sores – for six months – I was on prednisone and used viscous xylocaine to eat. I was tested for lupus, but it didn’t titer out. I was in a new relationship and at a new job – we all presumed it was stress. I got pregnant two years later, an ectopic pregnancy, so I didn’t get to keep it, but the change in hormones ended the apthous ulcers….
2003? – I asked my PC what was up with my red, cold, pruney fingers. She said Raynaud’s – it was usually primary, but could be secondary to an autoimmune. She said she was sure it was primary in my case, but we could do blood work. She called me two days later and asked me what I’d known that she didn’t know. I told her about the lupus, not lupus, in 1976. She said I was right – I had abnormalities and she was sending me off to the rheumatologist.
Larry Balentine – the rheumatologist – was heavily into research. He took the usual boat load of blood – I remember some had to be kept at body temp, some had to be refrigerated – I came back with speckled ANA – I’m sure other markers as well – but I remember speckled ANA. That was the first and last major bloodwork I had done. He said I was classically MCTD. He explained that it was an overlap disease and I should pay attention to symptoms so that we could treat and keep me feeling as good as possible. I was immediately put on Norvasc for the Raynaud’s. Oh – and meds for GERD – I was told my esophagus was connective tissue and had eroded.
Subsequent years Balentine sold his practice – I had a temporary doc from Denver during the transition and after she listened to my heart and lungs she told me that I was fine now, but that’s what I would die from. i.e. heart lung issues. I was like 57 or something and frankly wasn’t thinking about dying, at all!
2007 – I had carpal tunnel surgery – immediately my hands became swollen with inflammation – they put me in PT for my hands – but nothing helped my flexibility or swelling until this year when I went AIP. At any rate – that was the end of wearing rings and I suddenly had very disabled hands. I was also put on Plaquenil to keep the MCTD at bay.
2008 – I herniated a disc lifting a box that was too heavy for me – a shipment to my store that went to the wrong address. The disc was deemed inoperable because of degenerative disc disease – I suspect from the MCTD – but at the time I just dismissed it as more crap. J
I lived on random pain meds depending upon the severity of my back pain – I routinely take two Aleve every morning – and two every night.
2009 – I lost my business and all of my properties because I had no workmen’s comp on myself. I worked until I passed out getting out of bed and decided shit was going down. It did….I ended up a full time RVer and have never looked back. I do own a little house now – as well as a motorhome – but I ended up VERY downsized. It was a good thing – but at the time it was heartrending.
2011 – During routine hand and foot xrays it was deemed I had joint degeneration from RA complications. I was put on Arava, with comments that we would stick with it as long as we could – and then I’d go on infusion Remicade, which is covered by Medicare.
2013 – I became a vegan – hoping it would reduce inflammation – I also hoped to lose weight. My rheumatologist suggested a juicing diet for a month. She said a number of her patients had great results and lost a ton of weight. Of course I had too much fruit, not enough greens – and only lost four pounds. That was the beginning of the veganism. I was a vegan for seven months – with no improvement to my inflammation.
2014 – Autoimmune Paleo Protocol…AIP starts to be discussed. A gal on the MCTD forum challenged me to do it. She was convinced that a lot of things I just lived with were part of my MCTD. I don’t know if they are or not. I fight being tired, my hands ache – I don’t know – actually I feel pretty good! I feel as if most of my pain is related to my herniated disc – it creates a lot of sciatica.
I spent January eating strict AIP – I even gave up diet Pepsi – my only caffeine…within a week I felt a difference. I could make a fist – I had more energy – I remember thinking I felt ‘lighter’ – which was odd. I ultimately lost 17 pounds – and have gained 12 of them back….regardless – I rarely eat grain – only on very special occasions, once a month at most. Cooked tomatoes cause inflammation and swelling – I can eat hard cheeses (thank God for cheddar). For all intents and purposes I am sugar, grain, and dairy free. I’m OK with eggs –
August 2015 – I see my rheumatologist and she is very pleased with my improvement in symptoms. I have some increasing degeneration in joints in my feet but she is so pleased with my overall improvement that we’re still holding off on the Remicade. She commented that the difference from the vegan ‘era’ was the grains. My PCP was also thrilled – she admitted that she and her family are Paleo and congratulated me. It’s wonderful having that kind of support system.
I’m wearing a ring for the first time in seven years…..I can tell when I eat things I shouldn’t because it doesn’t slide on and off as easily. I had more grain yesterday than I’ve had this entire year – it was my granddaughter’s first birthday party – and I had a slider and pulled pork – each with a commercial bun – and two cupcakes – which were made from scratch. However – I did have some sugar – and certainly grains. I just tried to get my ring off and can’t do it easily. It amazes me that my body responds the way it does.
That’s it! I feel totally functional – other than my back – and I have weak hands. I once thanked my rheumatologist for keeping up on meds to keep me functional – and that I felt I had a really mild version of MCTD – her comment was that the difference between me and many of the people on the forums was my attitude. I don’t know………
Kerry, I’m interested in sharing your story in an e-book project. Our mission is to get OUR voices heard. Making Invisible Illness Visible!
If you want more information contact me and check out our website. Your story touched me. Hugs and spoons! I haven’t posted anything on the Dragonfly Warrior Book project in weeks +.
Not a solicitation, an invitation. ?http://thedragonflyproject.simdif.com
Such a well written history and similar in a few areas. Thanks for sharing your experience so eloquently.
Michelle, I would love to also take u up on ur invite for sharing, but as u know our issues can hold me back from even beginning to write my story. I also refused the harder meds until now but now I don’t feel like I’m being taken seriously, esp as my new Rheumie , seen once thus far, was suppose to get back to me last week and didn’t and come to find out when I called to check for an update on a new treatment, my dr was on vacation all this week. The receptionist…really almost got to me…she said well you haven’t been on a thing new very long and strongly implied…what’s one more week. She also said…what could she do [ the dr or her nurse] as they will not have your records with them but do check in periodically. I said her nurse could help with that and thus far I’ve been ignored. She obviously does t understand our pain and struggles which I’m grateful she doesn’t , but no need to be so brushing off like it’s only a week. Needless to say…it’s been a very long week.
I just want to , at minimum, get back to school as I work off a grant which has a time frame…I wish they took it more seriously. If this grant runs out before I finish my work it will be very difficult to finish my Ph.D. You think a dr would understand this. The Drs here in SC are overbooked and overworked. Very frustrating.
I wasn’t planning on venting this much but expressing what I have has been therapeutic. Thanks for reading
I wish you renewed health and happiness. Hugs and prayers my friends.
Hi Kerry, just read your story. Thank you for sharing. Back pain can really ruin your day, and it really sucks when you have to deal with it as a matter of daily living. I do believe attitude is one of the things that keeps me going too, well that and Cellcept, etc, etc… I tend to push myself to do things, be it around the house or getting out. Sometimes I even amaze myself! (That is tongue in cheek based on having MCTD). My body will fight back and force me to take a break when I need to. I’ll spend my down time reading and browsing Pinterest for creative ideas.
I will work on my story and add it soon.
Hello..I’ve been diagnosed for about 2 years this July. I am in an “advanced stage” and would like to know what medication you take that’s helped. I haven’t had any luck and am now having breathing issues