I’ve had some hang ups lately. It’s hard when I have set backs during the school year. Here’s what’s happening.
As most of you know, my body is rejecting the medication that I need to keep the pressure off of my brain. We did a spinal tap to even the playing field and buy us some time. I’m using that time up faster than I’d like. We have to figure out why my body no longer can have that med and fix the issue, or we have to do spinal taps regularly, or get a shunt placed. If we don’t find a fix with the meds, I’m sure my summer vacation will include getting a shunt.
I’m also doing sub cutaneous Immunoglobulin therapy once a week for two reasons. One-to treat my immune deficiency and two-to treat CIDP. That is going ok. I actually think it’s helping a great deal and I don’t even mind five little needles in my belly for 3 hours once a week. The hardest part about that is trying to keep my puppy off of me during infusion time.
Over the last month, I have lost vision in my left eye three times. It’s not like when I lost it the first time and everything was pitch black, it was light but everything was so blurry I couldn’t make out any figures. It’s lasted about 45 minutes and then returned. After discussing this with the ophthalmologist and doing a little research, I think they are ocular migraines. The ophthalmologist says right now my optic nerves look good, but according to my vision field testing I am losing contrast in my vision. This simply means that if someone healthy and my age took the same test, they could see things much dimmer in the same location that I can. For whatever reason, things in my sight must be brighter to see than other people. She said she’d like for us to keep a close watch on it.
Lately, though I have felt really poorly. Almost like I did when I had sepsis, minus the fever. I want to sleep all the time. On Tuesday, I had an appointment with my LLMD, my local specialist, and my ophthalmologist as well. The two doctors spoke with each other on the phone. They ordered many tests, 12 tubes of blood, and two bottles of blood (X3days). We also did an ozone treatment and a Meyer’s cocktail in hopes to restore whatever is happening.
We are awaiting results. I did get some abnormal results from a 24 hour urine the neurologist ordered. Those results are indicative of a tumor. So on Friday, I had an MRI looking for a tumor in my abdomen. Tomorrow, I will have an MRI to look for one in my pelvic region. He said if that was clear, he’d order a full body MIBG scan. I’m just hopeful we figure out what is causing me to feel so poorly.
I went to the store Friday night so that I would have food at the house and not have to go anywhere this weekend. I think I have slept about 30+ hours this weekend. Whatever is going on, my body wants sleep.
I’m generally really good at hiding how sick I truly am, but lately, I’ve had to share it with staff members, especially my bosses. (That’s super hard for me.) Thankfully, they are all really understanding. My hope is that we can figure something out soon, make a plan to deal with it, and move forward. I hate feeling like this. And I hate missing work. If you are the praying type, please pray that we figure this out and so I can return to my normal level of functionality.