Updates on the past few weeks.
Hey friends,
Thank you so much for praying for me and my family. It means a lot to all of us! Your love and support really encourages me.
My sister had her abdominal CT scan, but aside from some incidental findings, the scan was completely normal and didn’t explain her symptoms at all.
She saw her GI specialist who recommended an upper GI endoscopy. That was done on the 11th. Other than a little tissue inflammation (the dr. biopsied 2 areas, and we’re now waiting for results of those), the scope, too, was completely normal and again doesn’t explain her symptoms.. I know “normal” is good news, but it’s been frustrating and discouraging for her and all of us as we still don’t know what’s going on. Thankfully, the dramatic weight loss has stopped, but she still feels ill and has the same upper right abdominal pain. Next week, she has an appointment with a naturopath, and we’re praying the dr. has more insight and can think out of the box..
I recently had a brain EEG that my neurologist ordered to figure out why I’m experiencing frequent (and sometimes severe), whole body jerking, especially at night. EEGs are no fun because the tech has to place 28 leads with “glue” all over your head! I also had to “hyperventilate” (which makes you feel super yucky) and face a strobe light with rapid, flashing lights….both of those are standard tests that can trigger seizure activity. Still waiting for results, but I do have an appointment with my neurologist on the 25th.
I also had a follow-up with the sleep medicine provider. I have obstructive sleep apnea (from muscle weakness) and need to use my BiPAP machine every night. Unfortunately, I’ve been having worsening central sleep apnea (CSA happens when the brain doesn’t tell the body to breathe….this is much worse than OSA…). I’m so exhausted and wake up with really bad headaches every day. The sleep specialist wants me to use something called an adaptive servo ventilator or something else like that for the CSA, but I first need a sleep study done in the lab in order for my insurance to cover the machine. Sadly, the lab is very booked out, and my study isn’t until December! They are trying to get me in sooner, though.. Please pray there’s an opening sooner than December!
I started that medicine for my kidneys to potentially hold on to magnesium better, but I need to wait a couple of weeks to see if it really helps.. My blood pressures can get pretty low with this med (it can drop down to 82/56ish), but thankfully, I haven’t had worsening dizziness or lightheadedness.
Tomorrow, I have a podiatry pre-op appointment as I’m having surgery next week for ingrown toenails on my big toes.. Even though I cut my toenails straight and don’t even wear shoes often, my nails still curve so much and cut into the skin. It causes swelling, redness, and a lot of pain that aggravates my small fiber neuropathy. I really didn’t want to have this done and we put it off as long as possible by just having my podiatrist clip the ingrown toenail as much as possible, but that only “fixes” the problem short-term. He recommended that I have this corrected permanently, so we decided to go through with it. I have to be put out for this, and I’ll have to do “wound care” for 2 weeks. Not looking forward to it, but I do want to get this problem fixed. The day after the procedure, my pain dr. will be doing a bilateral lumbar sympathetic nerve block to calm the surgical pain down so that I don’t have a nerve pain flare-up in both feet.. It will be such a full week as I also see my GI dr. on Monday the 18th.
This Friday, I have an ENT (ear, nose, throat) appointment because I’ve been having swallowing issues that cause choking. We’ll see what they say/recommend.
As most of you know, I played violin for about 9 years (my sister taught me, and all throughout the years, we played beautiful duets together….I have to say, we sounded really good.. haha
). I was so very sad when I had to stop because of CRPS (complex regional pain syndrome) that spread to my left hand.
After numerous years, the CRPS slowly resolved in my left hand (but I do still have nerve pain in both hands…the nerve pain is much worse in my feet, though). My hands have been “itching” to hold my violin and bow, so recently, I picked up my violin after not even touching it for several years. To my amazement (and my sister’s), I was still able to play for a little bit without aggravating the nerve pain. Yes, my hand is super weak, but I can still play with vibrato and even shift to different positions (and not just stay in 1st position…that’s violin jargon for those who are confused..). My sis and I played 2 duets right then, and it brought back so many special memories!! I was so happy. I wanted to play more but didn’t want to overdo it.
Well, a day or so after, I started having really bad pain in my shoulder, and now I can’t move it well at all.. My physical therapist says I have a shoulder impingement… It was so disappointing to hear that, but I still want to play violin! And thankfully, he did say that I’ll be able to play again once this heals. He said it can only be for a few minutes at a time, though. But I’m just so excited the pain in my left hand is not at all like it used to be!! The pain was so very severe back then with discoloration and swelling. CRPS is just the worst.
I think that’s all for now.. So much keeps happening….and it’s been super busy, but I’m taking it one day at a time and leaning on the Lord for courage and strength. He is full of grace and compassion, and I could never do “this” without Him by my side!!
