I slept poorly last night and woke up feeling like crap this morning. I kept thinking that any minute, I would feel better. It never happened. Bummer 😦
It was hot today. The local weather says 100 degrees. I am very, very thankful that the forecast the next few days is 80’s. I kept the window open until around 6 PM. I used water to wet down me and my nightgown and sat in front of the fan to stay cool.
The van that has had the creepy guy sleeping in it had to do a 4 point turn to park smack dab between my living room and bedroom windows. Most of the parking lot was empty. I have lost all respect for the owners of the van. Now they are just being jerks. I closed the windows and shades and turned on the A/C. Then I took a 2 hour nap. I was in too much pain to sleep well, so got up for meds.
I thought maybe I would feel like going out to the store. Nope. I haven’t even left my apartment today. My eye is drooped, my voice is broken and I am darned weak all over, plus my guts and head hurt. It’s just one of those days.
The highlight of my day was making lunch from broccoli, onion, portobello mushrooms, diced ham, cheddar, fresh squeezed lime juice, salt, pepper and sour cream. I am using up food that Heather left behind.
The night before, I cooked up broccoli, onion, portobello mushrooms, Chinese bbq pork, Char siu bbq sauce and some leftover rice. Both meals were yummy and easy to fix since Heather had chopped up the broccoli, diced the ham and cooked the rice….and left it in my fridge 🙂
A woman on one of my MG support groups has a husband with MG. She often seems frustrated with him. Today she asked us what a normal day is like for us. Everybody said they nap, sit around, watch TV, hang out on the computer, barely move, feel yucky, etc. I felt better knowing we are all pretty much the same. The wife of the MG’er was still miffed that the guy is a lump 😦 Nobody truly understands unless they have this PITA disease.
Wendy The Wanderer 
Here is our forecast:
7 Day Forecast
FRI
95° 79°
SAT
99° 80°
SUN
100° 80°
MON
102° 80°
TUE
101° 80°
WED
102° 80°
THU
103° 80°
It wouldn’t post horizonallyl Your meals look very tasty and healthy. Gee that sounds a lot like my days. I bet that her husband would understand.
My appontment with my hemo/onc is on Tuesday and none of my lab tests are up yet. I hate getting the results at the appointment. I don’t have time to think to ask questions. I think I will try to hold out until Monday and then beg for my results on Monday. The nurse is the one who inputs them and she is probably busy. I am just anxious to see if I have more, less or the same amount of cancer,.
I feel the same with my Sjogren’s disease. A lot of people say oh it just causes dry mouth and dry eyes right? The fatigue and the joint pain that come with it are the worst for me. I often feel like maybe people think I’m being lazy because they just don’t get it
I almost wish I knew what problems I have are from which diseases. I use Restasis for my eyes, but they are still hurting. Today I got some krill oil. Have you ever been told to consume Omega 3s for Sjogren’s? I am hoping it makes a difference. I would like to call a moratorium on fatigue and joint pain for all of us 🙂
I haven’t heard of the omega-3 from any doctor. The rheumatologist my doctor sent me to, really did nothing for me. My insurance requires a rheumatologist prescribe any IV arthritis meds and my doctor thought I could benefit from them but the rheumatologist I saw was basically downplaying that Sjogren’s could cause such extreme joint pain. I tried explaining to her I’m only 37 I have arthritis in my knees and hands and the Sjogren’s makes it worse but she kind of disregarded what I had to say. My doctor was not impressed with her at all, I just haven’t had the patience or the time to go to a different rheumatologist. I just don’t understand if my doctor thinks I need it, why couldn’t the rheumatologist just prescribe it? I have insurance, I’m willing to pay for it, but her response was well they only work in 50% of Sjogren’s patients. So let me try it, I feel like it’s my loss not hers if it doesn’t work.
Going around and around with doctors is a PITA. Each one has their own opinion and ridicules whoever came before them. We just get caught in the middle. All docs agree I have arthritis. No 2 docs agree on what kind. It gets old. Who cares? Just help me feel better! My Utah rheumy is a dud. The neuro-opthalmologist re-diagnosed Sjogren’s with a Schirmer’s test and reading my past medical records. A specialized rheumy did ultrasound of my joints. They are a wreck. What meds do you want to try? Docs have had me take many different arthritis meds over the years. One kind made me faint. One kind gave me seizures. The only things that help me are steroids, Motrin and IVIg. The rheumy I had in Florida is the first doc to put me on cellcept for MCTD. The NY rheumy wanted me on Rituxin for MCTD. Today somebody, somewhere, said something about testing for RA. When I was 18, I had never had sex or even kissed a guy. I tested positive for syphilis. They redid the testing with another version of the test, and I was negative for syphilis. That prompted them to test me for RA and I came out positive for RA. Then I got gold shots for a year. I tried today to read up on the proteins or antigens or whatever that confuse RA and syphilis. I found lots of info, but was too brain dead to absorb much of the technical stuff. I wish autoimmune diseases were better understood! And there HAS TO BE a relationship between viruses and AI disease. Mono made me worse, WNV made me worse and so have other mystery viruses.