Reached my original goal from incredible anonymous donor. I calculated that at about 4 weeks of help with a care agency. Anything above and beyond now will go towards future home care,  hospital bill and copays which are climbing.

If you can give still thank you, if you are unable please share. Light and Love to all..

Once on Hospice Insurance wont pay for in home health care. am in severe pain and muscle wasting, malnourished and unable to rise by myself, walk unassisted or use the bedside commode without assistance. Bed bound by all accounts. I cannot prepare my two safe foods. Larry has to work and I don't want to continue to burden my 14 year old, plus she will be going back to school.

 

Diagnosed with Mast Cell Activation Syndrome (MCAS) by an immunologist/allergist via blood and urine tests and hyper mobility ehlers danlos ((hEDS) by a neurologist both in 2019.

 

As you can see from my pic the hEDS has also taken a toll on me. My jaw is not connected and the connective tissue all over my body is degrading. My joints pop in and out often and its extremely painful.

 

I eat 7-8 peeled apples a day 1 1/2 pounds of pureed chicken a day. These are my safe foods right now. Up until May 2021 when I hurt my back and my neck and my jaw condyles finished degrading from being connected to my jaw from the hEDS, I lost safe foods and had to puree what I had left because the injuries and chemicals/VOCs of remodeling new house triggered massive MCAS flares and the hEDS became really bad and my joints pop in and out. Also get jaw dystonia and body tremors.

 

I was maintaining 90 pounds before I had COVID in February and was eating the same thing and quantity I am eating now and trying to add foods. I am still eating the same thing and amount from before COVID My Hospice Doctor thinks this a form of long COVID where my body chemistry changed and absorption was effected from COVID. Also long COVID ramped up my MCAS and hEDS. I Dropped 20 lbs was 67 when I entered Hospital May 25.

 

When they tube fed me in Hospital I had such severe diarrhea and body pain and severe flushing and triggers and flares it was actually detrimental. It was suggested by Hospitalist that I discharge to Hospice. I lost even more weight in Hospital was discharged at 59 lbs. I am barely ambulatory and unable to care for myself.

 

Please help if you can....

 

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