Not truly a question for the community, I'd like to share my first 24 hours with a new medication which has brought me the first glimpse of hope in 6 whole years of solid, around the clock, disabling intractable pain.
I am blessed in many ways, unfortunately health is not one of them. I have succeeded cancers, excited specialists ("never in my wildest dreams did I hope to ever see a case in person, let alone treat!") been challenged by severe and unrelenting long infections. I can't list all I am currently going through, not due to HIPPA or because I doubt you would understand or because it would bore you mindless but because I just...can't. To list everything in black in white would be to acknowledge the deep hold my failed health has taken from my life. That's too much acceptance. Even as I type this I visualize my hands over my ears, "lalalalalala!!!!! I'm not listening!!!!!"
One of my central deficits is a genetic affliction, Variegate Porphyria. For nearly 2 years I have been completely bedbound from inadequately treated abdominal nerve damage. It has never been that my doctors do not try or do not understand; there are lists of medications I cannot take, others I am allergic to, still others I have genetic resilience to. My options are limited. Hydromorphone is a medication I can take and seems to help but everyone has always been too intimidated to Rx a truly therapeutic amount. I have been assured by the 2 pain teams that have worked with me that I am a perfect candidate for a hydromorphone pain pump. But. But first I must infection-free and off antibiotics for 6 months. I am teased and tantalized, "It would be perfect for you. You would only require a miniscule amount to be completely free of this abdominal pain. No hills and valleys, the amount of medication would be constant. You would be able to join your family for holiday meals and if the pain increased from the added effort you could trigger a bolus to compensate." So, you are thinking, why is this whiney b***h complaining? Nothing is ever simple, is it? Well, aside from the nerve damage and the pain and the disability, Variegate Porphyria induces a somewhat vampiric sun reaction. No problem. I'll just walk my dogs at night...(wistfully sighs at the memory of being able to walk the dogs...) However, as many of you may know personally, when your body is challenged by intractable pain for any length of time, you weaken. Insomnia ensues. Atrophy, general weakness. And infections. Nothing as common as an ear infection. No. Where someone else may chip a tooth and require a few days of antibiotics, I'm hospitalized with a jaw infection. My right hand is disabled and disfigured, a reminder of the osteomyelitis with septic arthritis. Surgical removal of necrotic bone and tissue. Almost 2 years ago and I am still not cleared to cut my own food. Just now remembering the doctor's indignant shocked face as he yelled at my 17 year-old son, "Why would you let her cut her food? She hasn't been cleared to cut a banana!" Antibiotic free, so easily attained by most everyone else the world over, seems far too lofty a goal for me. For 6 months! May as well be 60 years. Rare and unheard of infections love me. Most people go to the doctor when they feel under the weather, I cancel my appointment and hide! "We're going to have to admit you, set you up with a picc line and home nursing care, your labs show septicemia, you'll be on IV antibiotics for a couple of months." I don't trust follow-up appointments. They corner me in a tiny exam room and try to make me stay. Is it strange and so very 'Lala Los Angeles', they always bring in a cot and let one of my son's stay with me and the last time they also insisted I could keep my dog in the room. Which seemed ridiculously unsanitary, I had black circles of dying necrotic infected skin from where that devious sun had snuck through and got to me. How could it be advisable to invite my dog to stay with me? "Just relax, rest up a few days, try to think of it as a little holiday."
I've only now just realized. I'm rambling! Through hills and valleys, around bends, rambling. Back to my good news! The one Pain Management Team was so hesitant to try a fentanyl patch because of all my sensitivities and problems, "Dilaudid works. Stick to what works." Is it really working if it only lessens the pain to the extent that I can roll over unassisted? The other Pain Management Team voted to try the lowest dose patch, 12.5 mylan brand, along with my regularly Rx'd oral hydromorphone in case there was no effect. I placed it last night at 10:30pm. Still, didn't sleep but...I was able to sleep a full 4 hours this morning! And in my dream.....(wait for it.....) in my dream, I was pain free! A couple of hours ago one of my sons brought me a bowl of tomato soup and I ate the whole thing. I still feel the pain, does this make sense? It's still there but it's different. It feels more like a tenderness. ::Sigh:: Dare I say, it feels more like normal pain. It hasn't yet been a full 24 hours but this is the closest I've felt to hope in 6 years. This might work. I might be able to go someplace with my amazing sons! Maybe the park. Sit on a blanket and laugh and watch them play Night n Go Seek. Of course, one of my older boys will drive and it will have to be after dark, baby steps...but I can see it. And we'll bring the dogs!