So, I went inpatient for a sleep study. It was creepy being hooked up to literally 50 or so wires. I had to have a cannula in my nose, with a small microphone by my mouth, and an oxygen sensor on my finger. I have been having major problems with staying awake lately. It had gotten so bad I haven't been able to keep up with school work deadlines. I literally sleep so much, up to 20 hours a day at times, that there is not time to do the work. Thank goodness my professors have been wonderfully understanding! I am behind but I WILL catch up. Anyway, I became so depressed that I was ready to give up. After all, in my mind I may as well give up if I can't live my life anyway. Fortunately I went to the doctor to discuss these issues, and they took a thyroid test and stuck me into a sleep study. My thyroid was 4.37, which is within the normal 5.0 range...and one doctor dismissed it as I Am fine. I went to my other doctor who said the prednisone actually can artificially cause a lower TSH level on a test, so my 4.37 in reality could be more like a 7.0 or above, but is masked from the meds. The endocrinologist confirmed that, so they are getting me in for thyroid help very soon. Hypothyroidism makes you tired, cold, gain weight, your skin is dry, you lose hair, get a hoarse voice etc...all of which I have.
Anyway, during my inpatient stint Wednesday/Thursday I kept waking up. I honestly felt like I hadn't slet at all, and then they came in and woke me up. Evidently my breathing does not stop, but gets so shallow my blood oxygen level rapidly drops. It was to 80% and they decided to intervene before it went lower. They were not going to chance letting it go to see how low it does get. Anyway they stuck a CPAP machine on me, with a cannula type mask/nose prong. It was amazing. I slept all the rest of the night, about 6 hours. I had my first dreams in awhile and woke up refreshed. Now I am home again and I am back to tired all the time. I have to wait for the recheck appointment in a week to most likely get the prescription for the CPAP machine. I hope that these two things being taken care of, the thyroid and the shallow breathing at night will help me get back on track.
On a neato note, I am in remission (beginning stages) of my Microscopic Polyangiitis. They are going to start with lowering me off the prednisone first, then the methotrexate will be switched to imuran. We will see after awhile on that if I can get off the meds, and if I stay in remission or have another flare. This will be my second remission. With this comes the working on repairing the damage the illness has done to my heart, lungs, body. I will be working on Physical Therapy to strengthen my muscles which are terribly weak and prone to injury. I am goign to therapy for the lymphedema I ended up with in my legs. I am going to the weight clinic, and lung doctors to try to get my lungs and weight under control again. This disease is not actively producing the damaging proteins to my blood vessels right now, so I have to play repairman to my body now. It's rehab time, and it is going to be hard work, but I can do it.
What does the future hold? Right now a nap...then hopefully I can finish my homework. Until then I hope you all are doing good. Much love.
I have been so behind on everything, including school. First it took almost two weeks into school just for the books to come in, putting me behind already, then comes the weather knocking out my internet, and my medical problems. As it is now, I have had a headache for two days. I hate the weeks meth (Methotrexate not street Meth you weirdos) really kicks my ass in. I
slept most day Wednesday, most Thursday and all of Friday (today). This is not conductive
to getting my homework in on time. Add on to it the nausea , swelling in my legs, hands and face, headache and
pain (along with not having access to my pain meds until March if the other parts of my medical team don't get off their ass and figure out who is to give me some pain meds so I can function), well this has all caused chaos in my life. At least now I have a homework system I just finished setting up which helps with the forgetfulness of what is due when, and the brain fog I get with chemo. I need to call my professors and talk with them in person as my emails aren't being answered (I think they may not have sent due to glitches with my computer), and see if I can get something done to help me. I need some access to my assignments early, or see if I can get my work done due Wednesday on Friday because being awake trying to keep up on Wednesday makes me sleep for 2 extra days. If I just sleep all Wednesday I usually am better and less tired the days after chemo. Anyway, there is a video pending, I will be posting it later on. I feel like I am in crazy land. I am consistently late, but I am finding ways to fix this. I can't let my assignments fall apart right now, this early. First month is usually the hardest for me as I and my body adjust to schedules, shuffling of meds and appointments (yes I have to shuffle my meds on days stuff is due, like the chemo because they effect how well I can function on a given assignment with memory, wakefulness, or any combination of things). So I have to adjust schedules, meds, appointments, sleep and more to coincide with my schooling. Normal students may not understand this, but anyone who has gone to school who deals with a rare, chronic,and/or life threatening disease, and taken medications that are literal poison to your body, dealing with their side effects will understand 100%. Now hopefully I can get all caught up this weekend, talk to my professors, and hopefully they will let my lateness slide and be more lenient on me this first couple weeks. My professors are pretty nice, and understanding so I hope they will be able to understand. Addressing the confusion and forgetfulness with an awesome app called the homework app is part of the cure to the issue, and if I can get my adjustments from disability services in, hopefully they can put in the accommodations so I can be more successful. Anyway, I need to rest again. Headache from hell. I will try to type out my assignment, but honestly this is so much easier when I Am feeling sick...having to think and be critically thinking about a specific topic when I am in so much pain is SO HARD, but I will try...if I can't I will just get caught up on all my reading...it is far easier on my eyes with a migraine to read a paper book and not look at a computer screen anyway. Love you rare disease buddies, and if anyone has any questions, as always, feel free to ask! I am thinking of starting a video blog answering questions. Whatever they may be, personal, medical, stupid, or creepy. That will have to wait till I get caught up n school though, but hey I will be glad to collect questions until then!
