I wish I had the ability to write because I have so much I don’t want to forget. I’ve taken quite a nosedive this last month and I’m feeling pretty hopeless and sad. I have many new symptoms and I’m still trying to contend with the old.
Most recently, my jaw has been injured by my apnea oral device. It feels partially dislocated in the mornings and the pain is truly excruciating– from my lower jaw all the way up to my skull above my right temple. Talking is painful, eating is painful. I’m fearful that I will cause permanent damage (or have already). This is in no way trivial. One of the only things I’ve been able to identify that helps my illness is the CPAP and oral device, when I can actually sleep while using them. I’ve tried to go back to the CPAP to give my jaw a break, but it wakes me up incessantly throughout the night and makes me feel worse than if I didn’t sleep at all. Sleep is the key to my healing. There’s nothing that will take me down quicker than lack of sleep or poor sleep and the apnea is no joke. My only option is to wear the CPAP and take a medication to knock me out. This… I don’t know, I can’t even articulate how despairing this makes me feel. I can’t tolerate any drugs. There’s not one I have tried for sleep that doesn’t either cause an allergic reaction or make me feel much worse. Having to deal with the CPAP–the washing every day, the tight strap around my already-injured neck, the rash and acne on my face, the blowing my gut up with air, the endless awakenings–I am so upset about having to go back to this. Plus, trialling sleep meds when my sleep had gotten better! I don’t want to be on more prescriptions and I can’t afford to be. So, because of my jaw, a cascade of pain, energy-depletion and lack of sleep. And I think I might have to see a new doctor about my TMJ, which I need like I need a hole in my head. Or a new jaw injury.
My gut problems have gotten worse, if that was possible. I’m permanently inflamed and don’t digest well, even with HCL and enzymes. I now have to do an enema every other day or so. Another thing for which I have to find time and energy.
And the more downhill I go, the more I fear a day in the future when my husband has to help with this. Don’t even read that. It’s too gross and unbearable to think about. The only plus side of this situation is I’m very thankful for the detox help that enemas provide. Much better than being constipated.
Sleep, pain, headaches and exhaustion have been worse this last month. I’ve had no appetite, but have actually gained weight. The muscle pain and stiffness more than anything upsets me. I can’t go back to the pain I had in 2012; it was all-encompassing. It stops me from moving as much, talking as much or being in any way a pleasant person to be around. I can really topple quickly.
I started seeing a pelvic floor physical therapist who helped me more in the first appointment than the fancy GI specialist did with two appointments and two invasive tests. Of course, I’m only allowed twenty-five PT/OT/MT visits per year and I’ve already used twenty-two. And with Medicare, I’ll have zero. The thought of being without my strain-counterstrain PT is very disheartening. I haven’t seen him in a month and I know this is contributing to my worsening pain. He’s $150/hour without insurance.
I kind of scrapped everything I was doing with diet in order to try to fix my gut issues which started on the Autoimmune Protocol (AIP) last year, but nothing has helped. Which, of course, makes me want to consider eliminating foods all over again. Gut isn’t better and I’m going downhill, so maybe the new additions caused it? Or maybe the new probiotics. Or the Florinef. Or the emotional time I’ve had recently. Or the ups and downs of the weather. Or or or…
Almost every single day, I have an awful interaction with someone in the healthcare field. It is brutal and demoralizing. I just hung up in tears after talking to a clinic’s billing person who argued every point I made. Anger wrecks me and people just don’t want to help, so I’m reduced to weeping. I said to her, “Am I asking something out of the norm? You seem very annoyed.” They charge $150 for a half hour phone appointment, $300 for 45 minutes, so what choice do I have than to go in to see doctors and have to deal with insurance and billing?
Yesterday, I was almost in tears because my endocrinologist’s nurse was incredibly rude for the umpteenth time and for no good reason. Because I’m trying to figure out if the doctor can give me info over the phone rather than in person, because I’m trying to figure out how I’m going to get from the office to the lab for a blood draw when it is in a different building on the hospital campus, because I need to research growth hormone stimulation tests before I agree to it, because I didn’t want contrast with my MRI and they made a mistake and put the wrong order in…. These people are in charge of my care, I need them, but they battle every question. Endless phone calls about two things: money and protecting myself.
Well, this has been a cheery post. I kind of hope nobody reads this rant, but I’m going to publish it anyway.