I havnt been posting much lately due to my wife's illness, scleroderma. First of all I'd like to thank everyone for your thoughts and prayers. Secondly, it's time to update everyone on Ann's condition.
My wife's health started a slow deterioration 2 weeks before Thanksgiving. We have been in and out of the emergency room so many times since, that I've lost count. It got to the point where she couldnt swallow anything, not even water. She lost weight, down to 72 pounds and was admitted as inpatient at our local hospital and had four IV's going into her. This all occured 5 days before Christmas and she was released the Thursday after New Years day. Scleroderma symptoms vary person to person. She has full blown scleroderma. It ate up her body fat and is currently going after her muscles, she is extremely weak and very frail. While in the hospital her weight increased to 77 pounds and it is currently the same. She had a peg tube put in and is fed special nutrients as well as all her meds. She is on many medications, some very potent painkillers such as fentenal patches and dilaudid, and a few 'minor' pain killers. Doctors can only treat symptoms, there is no cure for the disease, she is 57 years old. She continues to deterioirate. We have been to the ER three times this past week including yesterday. Once for pnuemonia, second for a tube insertion into her bladder and yesterday for a urinary tract infection and a large lump on the side of her neck. A CT scan was done on the lump on her neck, it is a tumor. It is unknown if it is cancerous or not. Most likely a biopsy has to be performed. However, her bloodwork was normal. I suspect if it was cancer, her white blood cell count would be way up there, but it isnt. On the other hand, she is taking Cellcept which suppresses the immune system from attacking itself. So, a biopsy will tell all and it will probably be ordered tomorrow when we go see her regular doctor in the morning.
I tube feed her everything every 4 hours. I dont get much sleep, 2 hours at most at a time. I've learned that being a primary caregiver isnt fun, her needs and wants 24 hours a day are a challenge.
Her urologist asked me the other day if she has improved any over that past 5 years since she was diagnosed with the disease...no. He then asked me if any of the meds have helped...no.
He then mentioned hospice for her, and my sanity. Ann and I left the hospital and I decided to take the scenic route home, down hwy 17 from Brunswick. It was then, that it dawned on me what the doctor had stated and I wept with tears. Ann didnt see me, she was wearing my heavy coat with the hood over her head. I was in denial all this time, and her time on earth is limited.
My family has come to my side, her family hasnt been notified, they cant be reached at this time. I told Ann this morning what the urologist had stated and she is willing to go to hospice, but she continues to say that she is going to get better and stronger. We have prayed and prayed for this to happen and will continue to do so. We have in home help coming from various sources thanks to medicare/tricare, everyone involved has been helpful and supportive. I cant thank you all enough for your support and prayers. A special thanks to; Chickenzoo, Flockwatcher, Dweder, Math Ace, LaurelRidgeDreams, Chicken_Pauper, Sourland, Unclebean, and Speckledhen. BYC is truly a special place to be. I'll help out in the "Emergency" forum when I can...it is my relief valve so to speak, as well as are my chickens. Thanks again. Jim
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