It's been quite a while since I was on this site and the last time I posted, I was so frustrated, I was seriously thinking of ending it all.
I've been extremely ill for the past year, which is a lot of the reason I haven't been on this site. I had stated at the time that my podiatrist felt that something was going on in my body that was underlying all the different diseases that were manifesting. Well, it turns out that I have sarcoidosis.
Sarcoidosis is a disease that, even though I worked in the medical field until I became disabled, I really had not even heard anything about. It's an autoimmune, inflammatory disease that can affect any organ in your body. I pointed out a "rash" I had on my legs to my podiatrist and he recommended that I see a dermatologist, which I did. He performed a biopsy, which revealed the sarcoidosis. He said I needed to be checked out to make sure it wasn't systemic. Well, it took me almost a year to get anyone to really pay attention to me. I transferred my primary care to a different doctor, who really seems to care a lot more than the old one did. I had been coughing and was short of breath for about 10 months and kept saying that they needed to do a bronchoscopy to see if the sarcoidosis was in my lungs. I finally started coughing up blood and was running fevers and my oxygen saturations fell to the low 70's. I wound up in the hospital and a doctor finally did the bronchoscopy with a biopsy. Sure enough, the sarcoidosis was in my lungs. Since then, I've discovered that it's been in my spleen and liver for the last five years and was in my gallbladder, which I had removed five years ago. No one thought to tell me about the pathology report that basically stated that there was a sarcoid process going on. My spleen had so many nodules in it that a report said that metastatic disease should be considered. Nobody followed up on it - if it had been cancer, I would be dead by now. I'm seeing a doctor up in Denver at the National Jewish Medical Center (NJMC). They're the leading medical center for treating lung disease and sarcoidosis in the country. The doctor wants to have my heart checked out because I've already had a cardiac arrest and she wants to be sure that I don't have it in my heart. She also wants me to have a neurology consult because of all the neuropathy and radiculopathy I have and it attacks the neurological system also. It can also invade the brain, but no one seems too concerned about that at this time, although I'm having some of the worst headaches I've ever had in my life.
My blood sugars are under a little better control. I'm really trying to watch what I eat. I've decreased the amount of insulin I'm taking by about 50%, but I'm still on so much that my doctor says that even if I didn't eat at all, I would still be gaining weight. I finally told him last month that I wanted gastric bypass surgery. Studies have recently shown that that's the best way to "cure" diabetes.
I still have a long way to go; the medication that I'm on for the sarcoidosis doesn't seem to be working - and it's very potent medication. One is a chemotherapy medication and the other is something that used to be used to treat malaria. They have to check my liver every month to make sure that it's not being overloaded by the medications.
I hate this time of year, especially now that my children are grown and away from me. I'll be spending this entire holiday season by myself. I have no friends where I'm at now because I've been so sick, I've basically become a shut-in, and when my health deteriorated, my friends disappeared.
I hope everyone is doing okay (yeah, right). I am asking for prayers for whatever else comes my way.
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