Summary of Symptoms

“If you think the pursuit of good health is expensive and time consuming, you should try illness.”  – Lee Swanson

The last few months have been tiring. There's hardly a day I'm not so exhausted that I don't *have* or need to take a nap. It was around February or March that my daughter came into my room in the middle of the night while I was sleeping and I didn't wake up. She sat there and noticed that I would stop breathing. Interestingly enough, it was two years ago that I suspected I had sleep apnea but my home study didn't detect it so the Doctor said no. 

In late April I went to a sleep study lab and it was finally detected that I DO have sleep apnea. This past year I was noticing heavy, vivid dreams that I felt "stuck" or that I'm passing out or suffocating. Usually, I am kidnapped and held against my will while arguing and pleading to be set free. I've come to realize these are apnea and my dreams are a reflection of my body recognizing I am in danger. Likewise, I recently had a screaming episode in my sleep when Gianna came in during the middle of the night.

While I wish I didn't have sleep apnea, I am grateful to be getting a CPAP machine any day now to help me start sleeping better. I can't help but wonder and be excited at the prospect of not feeling as totally exhausted as I have for the past few years with using it. 

The internal tremors still upset my body, and they are most upsetting when sitting still or laying in bed, while my feet and legs are really the most painful part of my body most minutes of every day. I even went to a rheumatologist for the foot pain and tremors, hoping and wishing for some helping to understand why I get discolored, painful feet. His answer was fibromyalgia. He basically told me it's mental and anti-depressants could help me. He treated me with such disdain and with a horrible condescending attitude. It was very defeating and I left that appointment very heart broken to have been treated so disrespectfully. 

My hormones are also a rollercoaster and it *seems* my PCOS and endometriosis are flaring up with the various symptoms I have from day to day. I had to succumb to the fact that I can not tolerate another year of homeschooling next school year. With Jim's travel schedule, feeling so exhausted and/or in pain most days, and the need for a nap, my husband helped to register the kids for school. I wanted to be a wonderful homeschool mom and I feel like a failure that I couldn't achieve it. 

I'm already feeling guilt and shame over this decision. I don't like that my husband has to work so hard while I won't be working a paying job to contribute.

Starting at the end of May, I began the disability process. I was approved for my disability loan forgiveness in January. When we began attending our new church, we were introduced to a wonderfully sweet family and the man is an attorney. He feels confident that between POTS, MCAS, stomach issues, sleep apnea, etc that I have a decent case for myself. The downside is that I forfeit the ability to have a paycheck above poverty level because of the loan forgiveness and potential disability. Do I foresee holding a job that's longer than a few hours a day? Realistically, no. The tiredness and light headedness and dizziness from the POTS in my body is bad enough, but my legs and feet don't handle standing up for any length of time. The variety of symptoms are constantly a juggling act to endure. My prayer is that Jim won't resent me for staying home without a job when he's working so much and so tirelessly for our family. It's been a tough place for my heart and mind. I've been feeling extremely inadequate. I am college educated. I used to be completely self independent and self sustaining before marriage and now, my body controls me more than I can control it. 

It's so humbling living like this. Just this past week we ate at Bob Evans to complete our mini family getaway. I hate a tiny side of gluten free home fries with a little bit of chicken gravy. The waitress assured us they were gluten free menu items. I was practically narcoleptic the rest of the day after eating that, not to mention that I had tachycardia for 3 straight hours. Today I was helping my son in the shower and the next minute I was having a blinding optical migraine. As soon as the optical migraine was over, my head was pounding and my memory was completely dulled and I couldn't think of the simplest phrases or words. Why? I felt very odd and completely off balance. Jim is on a trip so, naturally, it feels very unsettling when such things happen. 

My left arm is becoming very painful as I continue to type so I guess this is as much as I will be updating for now. Here's to hoping for less tiredness with the CPAP machine!