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Regular Member

Date Joined Jun 2008
Total Posts : 59
   Posted 8/2/2018 4:07 AM (GMT -6)   
Good day all, hoping this email finds you doing well.
Myself, not so good.
I have what seems a mountain of issues so I shouldn’t wonder at feeling so miserable, but still I do.
Symptoms, pain, nausea and overwhelming fatigue is keeping me right in bed wishing I could get out.

If I had to pick a culprit I would say Lupus...Fibromyaglia....Sjogren’s. All brought on by sun/heat and overwork/stress.

It is not something I can avoid, it’s that I am readying our home for sale.
We have two homes; a situation that arose with the loss of my brother a few years ago.
No big stuff just paint and odd jobs that we just didn’t have time for until now.
Shampooing rugs, cleaning after tenants, getting the house repainted, repairing concrete around the pool, cleaning curtains, and staging. I of coarse am not doing the big stuff but the little stuff plus the stress is enough to have worn me out.
It’s all got to be done and Lupus waits for nobody.

But a new issues is some kind of arthritis. My hands hurt so bad they burn. They are getting real lumpy and bones. My hands are also very, very weak. It also involves my elbows and shoulders.
It seems to have started about last Christmas.
My rheumy is doing the wait and see thing which I am kind of done with by now.
Trouble is I am not good at medications at all. I think the sjogren’s is the culprit here, a very slow stomach motility causes lots of stomach upset with medications.

I have Lyrica and Baclofen which I have been forced to try in the past and it has gotten me out of some bad situations but always with a cost to me inother ways.
Weight gain, nightmares, cognitive stuff which is not fun.

I am at this point thinking for something out of the box. Maybe an immunologist suppressant.
Things have been that bad for that long.

I can’t really function. Just organize help for day to day stuff.
Garden help, house keeping help that kind of thing. Now I am thinking of driving help for the first time.
I can’t drive to do groceries very well let alone drag them out and in.
And to just get out of the house as I feel like a prisoner.
It all costs a fortune too but what else am I to do?


Veteran Member

Date Joined Feb 2014
Total Posts : 2152
   Posted 8/16/2018 12:36 PM (GMT -6)   
Hi things seem very quiet on this forum.. it sounds like you need some help. Can you get someone to live in and work for you, and then they can drive you around as well as doing all the other stuff that you are struggling with. Perhaps if you sell your brothers house this will enable that to happen?

It is imperative that you stay out of the sun with will make yourself very ill.
Stopped smoking Jan 2013. Diagnosed Left sided UC, 8th Feb 2014.
Gluten, Dairy, Sulfite, Salicylate, and Histamine intolerant.
Home FMT treatment in July 2016 to ward off reoccurrence of C DIfficile.
Failed Pentasa, Azathioprine and finally Methotextrate due to allergies/intolerance. Taking Humira. Have finally come off Prednisone Yay!!!
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