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Sjogren’s Syndrome – Introduce yourself and meet others
Autoimmune Diseases | Last Active: Dec 9 10:31am | Replies (661)Comment receiving replies
It's a long story. In short: in the last 7 years I had Cauda Equina Syndrome (2015), a fractured hip (2016), a spinal stroke (2018; for a while I was paralysed from the chest down)), 2 fractured vertebrae and a huge infection at L2 due to part of the facet joint crumbling (probably happened during the fall that also caused my fractured hip, but only discovered late last year). And in the last few years, also dry eyes, nose, mouth, throat...well, basically everything. Process for the Sjogrens diagnosis is still ongoing due to covid (everything takes longer now)- the only thing I still need is the salivary gland biopsy (the CT of the gland showed a disturbed pattern). Sicca has been diagnosed by ENT doctor. This foul small in my nose and taste in mouth started after my own covid infection (March 2020)- could be related, or maybe not. Had tests for covid and diabetes (negative). Nothing wrong with my sinuses either and I have the feeling it's coming from my stomach acid reflux probably due to gastroparesis (apparently some people with Sjogrens get that). Also, because I don't have much saliva, the stomach acid makes a comeback (haha) undiluted, so that might very well be the reason. Starting to change my diet (less coffee and fizzy drinks, less fatty or spicy foods, eat smaller portions more often) and take antacids (Rennie). How do I cope? Some days better than others. Having work that I do with passion helps a lot to distract me from the nerve pain I have since the neurological stuff happened (but not from the foul smell, regretfully) and I have a lovely husband who helps me as much as he can. The thing I regret most is that I can't walk on my own again since I lost my balance due to the stroke. But I have a very cool Alinker walking bike (pictured) and Nordic sticks for short distances. I guess I just take it day by day and try not to panic too much if a new symptom appears. I'm 68 and plan to live for at least 20 years more 😉
Replies to "It's a long story. In short: in the last 7 years I had Cauda Equina Syndrome..."
@ninette your bike looks so interesting and fun! I was so intrigued that I had to look it up! Is it easy to use even though you’ve lost your sense of balance? Can you tell us more about it?!
If I’m any good at all in reading between the lines and reading your overall moods...you sound like an amazing lady to be able to cope so well with so much going on. Especially the pain and being so immobile. My hats off to you. I’m happy for you that you enjoy your work and it keeps you occupied while dealing with so much physically which of course affects us emotionally and every other way. I commend you!!
I just read you story and so impressed with your strong positive attitude. I also have sjogrens and schederma . I have an ileostomy but it is a blessing. After years of struggles. The sjogrens is what is making me so week. The least three weeks I have have terrible mouth taste and terrible throat issues. Making it harder to eat as I continue to loose weight. I’m working with a dietician now and have a GI appointment end of august. My last doctor retired at the beginning of Covid. I’ve had gerd and other GI problems for years but the gerd got better this last year. My dry mouth is awful and now this very bad taste. My fatigue and confusion or brain fog is awful. I also keep busy contributing to an ostomy group that before my move to Arizona I was president of. I still do the newsletter for this Northern California group and it is such a help knowing I can still help others. This autoimmune had put me at such high risk during Covid (and from fatigue ) have not seen or been as social as normal which as so saddened me. I also have a wonderful husband that is the only one that really knows what is happening with me. I’m getting very depressed not being able to go as much or eat or socialize. I am very weak. I’m 76 and would love to live much longer and watch my beautiful great grands grow. I have so much family that I love and miss they don’t really know the full extent of my issues. But your story encouraged me so much. Thank you for sharing. I would love to try to walk more with the awful heat here and coyote issue haven’t been exercising I must find some and try to start. Again thank you!
Ninette — you have been through a lot. Good for you for making helpful changes. For the acid reflux, you could consider decaf coffee. I had to switch to tea because of reflux.
What is a spinal stroke?
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Love your ride!!!