Today is not a good day.
I woke up with a migraine- breath-stealing, nausea roiling, light/sound/smell/touch-sensitive; and all I wanted to do was take my meds & sleep it off. Stress has been high lately, & I’ve had more migraines in the last few months than is normal. I can’t afford some of the meds they want me to try, so I have to deal with them by smothering the pain in sleep. The doctor doesn’t understand… It doesn’t matter if a drug might help me, if I can’t afford it. It’s not even a guarantee of pain relief, just a chance. A maybe.
I don’t make enough to throw utility money at a Maybe.
Then, I get a call from my regular doctor’s office.
I have osteo arthritis in my hands, diagnosed by a rheumatologist. Most of the time, my hands, mainly my finger joints, feel as though they are full of broken glass, grating & grinding on itself, just under the skin. Occasionally, when there’s pressure put on those joints, the glass sets itself on fire, just for that extra-special kick.
He told me he couldn’t do anything else, as far as treating the pain long-term went, that I had to go to the Pain Clinic for that. I was to call my regular doc & have her send a referral to the Pain Clinic for me.
They sent a note back to her this morning saying they won’t see me.
Regular doc says I have to call rheumatology doc back, to see what my other options are.
So, basically, the health care system here is telling me they want someone else to deal with it. No one is willing to actually sit down, LISTEN to me, & help figure out a solution. I don’t know if they don’t believe me about the pain, because no one is actually talking to, or listening to, me. They’re all looking at xrays & blood tests, thinking that tells the whole story.
I’m not a hypochondriac looking for attention. I’m someone who’s been through a lot of medical crap in her life, & because of that, has built up tolerances to certain pain meds.
I don’t like taking pills. I don’t want to feel stupid & slow at work, & I don’t like the loss of control the drugs make me feel. I’m a control freak when it comes to my own body. I’m in charge, & I hate not feeling like I can say what happens with it.
In 2001, I finally had surgery that fixed a problem with one of my kidneys – that took 5 years & every test known to man & his dog to figure out. 5 years of flaring, excruciating pain, without a diagnosis to even give me a sense of reason.
In just the past 3 years, I’ve had to deal with having my gall bladder removed due to gall stones & severe pain caused by inflammation.
I’ve had endometriosis, adenomyosis, & an ovarian cyst, which ended up with me having a hysterectomy. Following my surgery, my surgeon said he couldn’t figure out how I’d been walking upright, much less how I’d gotten into the hospital on my own two legs, due to the extensive pain the numerous occlusions of endo & adeno would have caused.
And now, the arthritis diagnosis.
I know pain.
I know how it steals your breath, messes with your senses, & turns your world into a small, very self-focused, & seemingly selfish, place.
I know that other people can’t feel my pain, they don’t understand that – even picking up files, taking a cap off a water bottle, using a pliers to take apart rivets & staples (part of my job, taking apart books held together by these things) – all these things cause my hands to flare, & tears to spring to my eyes because of it.
I gave birth to all 3 of my children naturally, without any drugs to aid the process, & ended up in shock due to blood loss during one of the deliveries.
I know pain. Don’t tell me I’m not perfectly aware of what my body is telling me.
I just want to be able to go to work & live my life without being either half-stoned on pain meds, or in constant, grinding pain.
Where do I turn now?
While I sit here with my hands full of glass, my head pounding, & my chest full of anxiety, depression & hopelessness.
What do you do when all the doctors, the “professionals” tell you that you’re not worth their time…..