It has been a while since I updated. But there hasn’t been a whole hell of a lot to report.
I made it to my pain doctor appointment yesterday! And I didn’t even get lost or take 100 years in the parking garage. But the visit was severely disappointing. After I left Dr. S’s office last time, he told me he needed more information before he felt comfortable setting any kind of prescription plan with me. So, while I was setting up the allergy testing, I called around to all my many other doctors and arranged for them to send everything to Dr. S. Records, test results, medications… everything. They all said that they were on it. And I never heard anything from Dr. S so I felt pretty good about it. Well, that’s not quite how things worked out. All the Dr. S had received was a rheumatology report from 2016 and a note from Dr. C’s office saying that I was looking at a different allergy specialist. That’s it. Nothing from the endocrinologist, the neurologist, my most recent test results from Dr. C; nothing. So we are still in the exact same position. He doesn’t have enough information to go on. Part of me is incredibly frustrated that Dr. S never told me that he hadn’t gotten anything. I have had 2 months waiting to go back in and see him, I could have gotten everything squared away if I had known. But I’m trying to let the anger go, there is nothing that can be done about it now. Also, maybe it wouldn’t have mattered. Dr. S wants my current results from all the specialists that I’m about to go see. Old records that basically say “Weird test results but we don’t know anything” aren’t really all that helpful. Dr. S thinks I have a lot wrong with me, especially from the neurological and rheumatology angle. Something like rheumatoid arthritis is what he is thinking. While I don’t particularly want to have a disease like that….if it will explain things and can be treated then it is something that I can only hope for. Answers, I am hoping for answers. And I am hoping for progress. I am bitterly disappointed that we couldn’t do a prescription plan. I want a job so bad. I want stability the ability to function and live my life. I want to work out and be healthier. It’s all that I want. And now it still feels far away. Bitterly disappointed indeed. All I can do is try to move forward.
Something I want to mention in case it comes up again; on Thursday 10/18, I coughed up a huge solid chunk of blood. Dr. C and I are hoping that it was just from the dust and allergies at Sharyn’s house. But I need to keep it in mind and watch out for fevers, stomach pain, or chest pain. So far so good. I have developed a really bad productive cough. The stuff I’m coughing up is starting to taste bad and turn dark. So I’m pretty sure that I have bronchitis again. Dr. S suggested that also as I coughed my way through our appointment. I sent a message to Dr. C and am waiting for antibiotics or whatever. Between the dust, allergies, and my smoking, I really don’t want it to get out of hand and turn into pneumonia or something. Still having quite a bit of drainage and spitting. Huge success: ever since I started getting treated for allergies, I have not had so much as a headache! Not for the last 2-3 weeks. It’s a flippin’ miracle! Those headaches and migraines made my life a living hell. I have stopped the Acetazolamide for the time being to see if I really need to be on it. It makes everything taste weird and it is just more medicine on top of all of my others. If I can ditch it, I will be totally psyched! My BP has started getting a little low so I lowered my Labetalol back town to 2 a day, from 3. That is a relief. I have been out of muscle relaxers for a while, like 4 days, so I have just been taking Clonidine to sleep. It is pretty effective and works well but the muscle relaxers will be filled again tomorrow. I’m glad, it makes for a more pain relieved morning. Dr. C sent in 270 of them which is awesome but it is the lower dose of 4mg pills. Hopefully by the time they run out it will be time for the insurance company to fill the 6mg ones again. I am still losing weight rapidly. Roughly 1 pound every 2-3 days at this point. I am hoping that the gastroenterologist will be able to shed some light on that, as it is really starting to concern me. I am throwing up randomly but not enough to really cause the kind of weight loss that I’m having. That’s about it for the physical report.
The pharmacy is mad at me for refilling my pain meds too early too many times. So, I’m back to strictly only filling them every 12 days. That shouldn’t be a problem. We can’t afford to get them before insurance will pay for them anymore anyway. I asked Dr. C if he could extend Jon’s medication prescription to a two week supply instead of one so that I can just pick up our meds once every few weeks. I hope he doesn’t mind because that would make things easier. Oh! Dr. S said that we can set up my back injections! So I’m gonna get that started. On a down side, I found out that he doesn’t sedate for them. At all. He said it’s not safe and told me a story of someone who almost died because of sedation. I’m not happy about that but I understand. Dr. S said that he is awesome and that it won’t be a big deal. I am trusting him on that. Dr. C has put in orders to get some blood work done. Kidney and liver function tests, and stuff like that. I need to go in and get that taken care of. Pretty much done updating. About to go out and call the Nutritionist, the endocrinologist, and call to set up my MRI. Gonna have to write all of this down. I’m gonna be busy for the next few months….