Plague of locusts??
April 24, 2008As many of you know I have been dealing with major health issues since the end of November. It all started with loveley Dr. M…who took me off asacol and set this chain of events into motion. You see he decided that because of one symptom I had that I did not have colitis that I had irritable bowel syndrome. Apparently one can have both but he was positive that I had IBS rather than ulcerative colitis (UC). He was so sure he was the most condescending bastard doctor I have ever dealt with. I told him that I had seen 5 doctors and no one had ever suggested IBS that everyone said I had colitis. He scheduled the colonoscopy anyway. I also told him about difficulty I had taking asacol and that I was unable to take the full dose as it made me very sick. He told me I just needed to to go off of it and eat more fibre. Well, for someone with UC eating more fibre is a recipe for disaster. But I believed him and I followed his instructions.
On November 23, 2007 I had the colonoscopy and he says “oh, you have colitis” I said, sarcastically, “really??” I never would have guessed. So he hands me a prescription for double the amount of asacol I had been taking. I told him I could not take that amount. He said well eat more fibre and play around with the dose. I asked him about immunosuppressants as I had not gotten anywhere with my colitis for 2 years and he laughed and told me I would never get those drugs because they cause cancer. I asked when I would see him again and he said never, my gp could handle it. I was almost in tears. This colonoscopy and doctor were supposed to fix my problem and instead he left me feeling completely dismissed and helpless.
A couple of days later I developed what I thought was a boil under my right eye. So, off I go to the doctor who prescribes keflex. The week goes on, my eye gets worse so that I can barely close it. I go back to her on Friday and she sends me to the hospital to have it lanced and to get IV antibiotics. Well, let me tell you that was no fun. I am not sure what hurt more the needle to numb it or when she cut it open. Anyway, they immediately cultured the stuff that came out and started me on IV antibiotics. At first I only had to go once a day. Then I developed a lesion on my stomach and they changed the antibiotic and I had to go twice a day. Now, I have crappy veins and it takes a long time to get an IV in me. We did this for 10 days. I was not amused. Finally, when they could not get any more veins they let me take them orally and sent me to the home care nurses who realized that we were not dealing with an infection but with pyoderma gangrenosum. It is a wonder no one else figured it out because they kept culturing all my lesions and nothing grew. I kept asking what this meant and all they would say was that it was not helpful. I am so grateful to those nurses!! I went to see a dertmatologist and he put me on prednisone to try and calm it down. I still had to have daily dressing changes for about 2 months and could not shower for the longest time.
My colitis continued to act up all through december and january. By the end of january I was close to hemorrhaging. I had lost a lot of blood and could barely stay awake. Off to the hospital we went where I spent 12 days on huge doses of prednisone and morphine. Apparently so much morphine that I was hallucinating but I don’t really remember much about it. I spent the next couple of months weaning down from 290 mg of morphine twice a day and 80 mg of prednisone. I off the morphine but still have 5 weeks of prednisone to go.
So, just when things are starting to get better. I am out walking 3-4 times a week I get shingles. I had this weird pain in my back which I thought was just a knot and could not wait to see my massage therapist to get it worked out. It had been bothering me for about 6 weeks and was very sore. Then I get this rash. Deb says: “you have shingles“. I say no, couldn’t be. Saturday morning i checked the mayo clinic website and sure enough i have shingles. Off to the walk in clinic where I am told yes, you have shingles and how long have you had the rash and why did you not get this looked at 3 days ago. Sigh. Can’t win. So now I am on anti-virals, atarax for the itching, gabapentin for the nerve pain and amitrityline for the severe pain at night. Oh and morphine to take the edge off because I have it here.
So, not wanting to invite trouble but what could happen next?? At least I know now I don’t have breast cancer because the pain I was feeling in that area was the shingles. My ashtma is not acting up it was just hard to breath because I had a band of shingles around my lungs. So feel free to guess in the comments what could possible plague Chris next!!
April 24, 2008 at 6:16 pm
I hope you get plagued with good health next time myself.
April 24, 2008 at 9:44 pm
The litany of health woes is terrible enough, but then to have things made worse by the people who are suppose to help you just adds insult to injury. I’m glad you found some helpful health care workers.
I hope you can come through this all somehow. It’s quite an ordeal, and I’m sure it wears you out. I’m glad you are not alone!
April 25, 2008 at 7:32 am
This whole hellish ordeal began with Dr.-pencil-driven-up-his skinny white ass. AKA Dr. Mousebreath.
The bastard was totally dismissive, rude and condescending, he told my Christine, the most intelligent, well informed person I know, that she was going to talk herself into developing Colitis. As if.
Then there was the misdiagnosis of the pyoderma gangrenosum, and the saga of treatment near misses, like the surgeon who wanted to do a surgical debriding for her PG. And hours upon hours having unecessary
IV antibiotics pumped into her system.
Then came the 12 dae hospital stay which was hell for Chris and both me and Angelina. Chris had several fairly good nurses, a few Nurse Ratchet wanabees, and a few amazingly dedicated, caring nurses, who kept her safe, sound anf as comfotable as possibe.
When Chris was discharged and came home, she was not the same woman I married. She was scared, angry, combative, weepy, paranoid. She had very frightening hallucinations, was sure Angelina and I were being direspectful, uncaring and mean. It was a tough slog through those few weeks post-hospital, Christine’s eyes were not able to focus, so she couldn’t use her computer or watch television, a big blow to a woman who loved both equally.
Things were recently getting better. Chris followed all the rules, did everything right, weaned herself off very high doses of Morhpine, and starting to see a light at the end of the tunnel.
Too bad it was a train coming toward her.
My poor, sweet lover now has shingles. I’ve not experienced this horrible disease, but everyone who has says the same thing, the disease is agonizing.
My poor sweet baby, it just so unfair. If love could take away your pain, you would be feeling like a million buck,
Keep on keepimg on, Chritine. I lovr you.
July 1, 2008 at 8:59 pm
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