Morning all, wishing you all a wonderful ALMOST SPRING day!
I spent Saturday in the car and it was bright and sunny.....so today I will take it nice and easy.
It’s funny how quick it all comes back along with the realization of strict limits regarding sun through the next
I have been struggling through the winter too. Less sun but more dry heat and dehydration.
I have two other issues to join in with the lupus, addison’s disease and sjogrn’s syndrome.
They both contribute to severe dryness, dehydration and thus inflammation.
I have humidifiers throughout the house but it really doesn’t seem to help much.
When my moist tissues become dry my sinuses, throat, lungs and GI tract are just indescribable.
Sinus just dry and burning all the time so my face hurts and is rosey.
My lungs become dry and I get this dry hacks cough and it is aggravated by chemicals of any kind and the coughing gets quite bad. I have to carry water where ever I go....so then I am also peeing continually.
I try keep activeso I started swimming at the YMCA....about
2 weeks of the chemicals in the facility had me gasping with shortness of breath so I had to start on puffers. My rheumy said
Then there has been the stomach and GI stuff. When sjogren’s Is bad my stomach just stops working.
The smooth muscle that is supposed to move food along is almost stopped. I have had motility studies
and am told that my stomach empties about
a third a fast as the norm.
So I eat two bites and am full. A lovely dinner begins to look like “oh, it’s you again”....
and of coarse if that isn’t working the gut doesn’t either so I am on motility drugs and laxatives to combat painful illieus.
So back doubling my prednisone and all the gifts it brings....insomnia, hunger...but I can’t eat, puffiness so my clothes pinch me, but it has settled the inflammation so I am not in pain and not in danger of the destruction and cancer it can cause.
So my goodness we do what we have to.
I am now looking at purchasing an elliptical....as despite all this fun and games my joints and mobility are not too bad. In 2016&2017 my platelets dropped so I was on high dose pred for 10months, 100 mg daily then tapering after a couple of months to see if that would fix the problem, it didn’t so I did chemo all last Christmas. No complaints it did the job and my platelets are good, but the high dose pred deconditioned my muscles. I am like a limp noodle and as weak as a kitten.
Then this past summer we moved and the packing and lifting just did wonderful things for my spine because of the deconditioned muscles...who-hoo! Ended up on lyrica and baclofen for that. Then I read about
fibromyalgia treatments because it finally joined in....and osteopathy saved me....it was awesome.
I could actually stand and move without pain after the first treatment. She said my spine was out of alignment. You got to try it..it is so great.
So goes my life....but I am determined slowly to get back to where I was....I tried an elliptical and it is fun, gentle and feels so good to move. For me gentle movement (like the swimming I can’t do for chemicals)
is better than any pain medication I have tried. Except when things get past the point where I lose my determination then a nice IV of morphine at the ER is the only thing that breaks the pain cycle so I can get back up, dust myself off and go fight some more. It is all worth it...
After all it is a lovely SPRING day!
Hugs to you all for listening. Wishing you well.