How do u keep hope alive when nothing ever turns out right? What's the point of living if all you have is pain - physical & emotional.
I have been in pain my whole life; literally my first memories are of being in pain, being in a hospital. Ive been given outlandish treatment options (I need to have someone grow me a new bladder), one doctor will give me a diagnosis and treatment option then another doctor will veto one or both, I've had multiple surgeries, multiple doctors, it's never ending. 35 years of doctors trying to help for a moment but then when they realize I'm a tough case because my condition is rare they give up get frustrated and then treat me like I'm trash.
The latest? I've been seeing this pain doctor for about a year. When he first met me he called me his science project because I had multiple issues that needed to be addressed. He was also primarily a spine doctor and had never treated anyone with the kind of pain I have. Everyone said he was the best so even when his arrogance reared its ugly head-when he flatly refused to listen to what I was saying-took up most of my appt time talking instead of listening-refused to adjust a medication and instead just gave me something different-even when my husband said I should find a new pain doctor because he really didn't like him I stayed. Clearly I was stupid. I should know better by now. I should know better then to trust.
My last appt - 3 weeks ago now - after I requested that we increase my OxyContin 20mg ER 3 times a day (the lowest dose) to the next level because I could feel that it had potential but wasn't strong enough (I was/am at the point that I just can't live like this anymore) and he began verbally attacking me. Like shouting at me. He told me he was giving me 'tough love' and he wasn't going to increase my meds at all anymore and if I felt they weren't working he was just going to rotate me thru the meds I had already been on and I could take it or leave it. He went on and on and finally as he's walking out the door his parting shot at me was that I should get my anxiety and depression checked out because maybe my mental illnesses were causing my pain. I was in shock. I was shocked again when I recv'd a packet in the mail from him telling me I failed the drug test and that it showed OxyContin, Morphine & Dilaudid. He knew about the morphine and I haven't taken Dilaudid in 6 months. Then it says I further violated the contract by receiving pain meds from another doctor. I went to the ER! I had to go because of a terrible UTI. My urologist was dragging her feet on it and I called my pain doctor prior to going to beg for some extra pain meds until I could get to the ER and get antibiotics. He refused. Told me he couldn't "take my word for it" even tho I could have the record sent to him and I have a long history of UTI's. The ER doc told me he was appalled by what my pain mngt doc said and gave me 5 extra pain meds along with an antibiotic - the infection had reached my kidneys by that point. According to the contract, there are only 2 other places I can be prescribed pain meds - if I'm in the hospital, and...wait for it....the ER. I did not violate the contract. I feel like they violated the contract. Not once during this whole time did they manage my pain. Where's my recompense for that??! I am filing a complaint against my -former- pain doc for the verbal attack and the false information in my file now. Oh, and guess what else? He only had one diagnosis written down for me - interstitial cystitis. Just one, and one that's hotly debated between my doctors. Where are the rest of my diagnoses? The burning nerve damage, severe uterine prolapse, the massive amount of scar tissue? WHERE?
But now what? I found a couple other pain clinics that deal with similar pain conditions that I'd like to be referred to but will they reject me now because of what this place did to me? My life depends on this. My life is in their hands. It's so unfair but so typical. I don't feel like I'm a person to these ppl. My pain is nothing to them.
My quality of life is virtually nil. I'm always in a lot of pain, I have flare ups daily, some last for days. I cry all the time. I can't do anything I want or need to do. I can't exercise. I can't be intimate with my husband. I have to choose each day if this is a day I feel like suffering thru, so I can save my breakthrough pain meds. Can I shower today? Do laundry? Sit on the couch to spend time with family? I will pay for all of them later. Most days I just stay in bed, and I still have pain. I have no friends. If I were a pet I would be put down.
I'm so scared. On top of this, I've been having gynecological problems and had to have an extremely painful biopsy of my uterus yesterday, I'm supposed to be having exploratory surgery soon, and my husband has been in and out of the ER because first his diabetes went crazy high for no apparent reason and now he's in the hospital because of issues the doctors can't figure out.
I'm seeing my PCP in a few days to discuss the pain doc situation. But I'm terrified. Oh, and just because life isn't great enough, I had to borrow a few hydrocodones from my mom because I ran out of all my pain meds a few days prior to my last refill script because the doctor can't count.
I don't know what's going to happen, but I know it's not going to be good. It never is.