Thank you for asking about me. I am among the living and doing a bit better day by day. It hasn't been an easy trial though - I am grateful for seeming to come out of this mostly intact. Colitis wise, I just had my second Remicade last week - and it hasn't kicked in yet. I am hoping that three times is the charm as it was the first time pre leg/foot surgery. I was off remi for eight months and the colitis raged back pretty soon - a comment that remi i short lived when stopped, another doctor had also just mentioned last week. As a stop gap, I am using tincture of opium to stop the D when it gets intolerable. Interesting that a very simple diet seems to suit me best right now - and also portion size has direct correlation between my symptoms and feeling poorly.
Charkot disease wise I am a physical therapy monster trying desparately twice a week to make this body/legs/feet do what they are supposed to. I am still walking like frankenstein - and I just got my new support braces/shoes which complete the look - But as I said, I am very fortunate to be walking with my own legs nomatter how limpy.
I go home on the 27th of this month from my nursing home - and although the stairs (three flights) will present a challenge - I will think of it as more physical therapy. I am going to wear one of those emergency buttons just in case of a fall, but again, I am not bitter about that.
I am going home to my wife who will no longer have to come to this home everyday ater work - bless her. She will still have to take on the lionshare of cooking and housekeeper - my chores and loves pre surgery - but I am just excited to be in our own little home here in DC and in Pennsylvania (one flight of stairs there). Just being together again will make my heart sing and improve my health I believe. Not to mention my beloved cat, exotic goldfish (one died while I was away-boo), my bird, turtle - and all my wildbirds I feed both in PA and DC.
I have lots of little projects to take on when I get home, photograph scanning, recipes that need to be organized properly, and try a little fall gardening - if I can.
I do have to go back to the hospital for an outpatient surgery the first week of November to have a small lump removed from my right abdomen. The doctors think it is a fibrous or fatty tissue disconnected from absilutely everything and just above the abdominal wall. Although they think it's nothing - we are going to have it removed and biopsied earlier rather than later. November is when the surgeon is next available. I am not overly concerned about it - as two doctors think it is usually 99.9% benign - and a result of tissue taken from my abdomen to transplant into my MRSA infected foot last May. If not for that transpant, they would have had to amputate my leg.
Still I remain positive. Once that is passed I will look forward to the holidays, cuddly warm nights with my wife reading to each other by the fire - cat firmly entrenched between us.
At this point I also want to thank all the wonderful people here who I love so much. Many of you are so new since I left seven months ago for the hospital. Even though I am no longer a moderator or very frequent poster - I hope to be back much more often when I am home on my regular computer. In the meantime I wish you all love and hugs - and improved and continued health.
With all my love