All most little kids want for Christmas is their two front teeth. All I want for Christmas is a doctor who doesn't give up on me. I had to stop doing DMSO installations. I was scheduled to do 6 and had to stop after 4, I was not finding much relief. I decided it is my body and it was not worth the extreme pain and hours of my life I was losing each week recovering from the installation that was not really helping. I feel like it helped in a VERY VERY minor way with nighttime frequency, but it was making sharp, pelvic pain worse, which has always been my worst symptom. I am not sure if it was the DMSO itself or if being catheterized each week was just too invasive for me, but it was not pleasant, it was rather hell-ish actually.
About two weeks into December I have my next appointment with the Uro (a NP does the installations). I am a little nervous he will yell at me for stopping or be angry that the installations were not helping. I have had such bad experiences with doctors in the past who have given up on me b/c their one or two ideas didn't work. They didn't throw me out of the practice or anything, but I ended up leaving b/c I was getting no help with my pain and they were treating me poorly.
One thing I will say about this doctor is that he was SOMEWHAT more open minded than the past ones. When I told him about my failed journey with Elavil, he didn't make me go back on it even though it is his favorite IC med. I just really want him to suggest something else now that I have decided DMSO is not my cup of tea, something that works.
I feel sometimes like I am screaming and no one hears me. A doctor maybe able to help one or two of my symptoms, but no one seems to deal with this one painful symptom that bothers me the most. I have come to terms with my IC in the fact that I know there is no cure right now and I am okay with that, I am just looking for some more support and compassion from a doctor along my journey. I want someone who is my cheerleader so to speak. Does such a doctor exist??
The Christmas season is a special time and I am grateful for my family, my friends and all that I have, but I can't help but have that one wish for that magical doctor. I don't expect anyone to cure me, I just expect someone to say "I understand and let's help you live the most comfortable and normal life possible despite this horrid condition".
So Santa...if you have some time after dropping off puppies, kittens and hippopotamuses to all the kids out there, if you could give me a map to the most awesome IC doctor on earth, Id' be forever grateful.
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3 comments:
The best thing I did for myself was find a pain management specialist. I live in Ohio and the narcotic laws are very stringent now, so most doctors won't prescribe them and leave it up to the pain management specialists now. He has been the most helpful besides my Urologist in my 10 year IC journey. He implanted the medtronic spinal cord stimulator for pain relief in March. Maybe that is something you can look into as well if you have insurance? It has given me a decent amount of relief (up to say, 40%). It's not perfect, but any relief is good relief in my eyes!
I've told you who the best IC doctor on earth is that is local... however, you've told me her practice doesn't take your insurance...
I hope you find someone that is the best for your symptoms that ALSO takes your insurance!!!
I am new to your blog! I finally FOUND a blog and yours is great! I have chronic pain (abdominal) for a year and the solution here (houston) was to remove my ovaries. After that, I became bed-ridden pretty much for the next 2 years w/pelvic pain....although I didn't know it was called that. After going to about 10 urologists, gynecologists, being admitted in the hospital a couple of times (morphine!) and being called an alcoholic (don't drink) and a pill popper (never done drugs) I finally found, right in my OWN gyney practice, a wonderful man who helped me and has given me back my LIFE! Dr. Peter Lotze helped me calm my Pelvic pain (which could/was be classified as anything from IC to everything under the sun).
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