Heart Test

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I had a heart test this morning. I needed to have one before they would let me into the EDS clinic. So there should be about a weeks wait before I see the results of that. They expect a six month wait for the clinic, so I just need to hang on. I hope they can do something, because I feel like crap. I don’t have much of a life going on, and even the cab ride was pretty tough.

The test itself was fairly intense. I’m used to the quick EKGs where they clip you on and monitor for about 5 minutes, but she did a full ultrasound. I brought husband along, as he’s good at Intel, he’s my sherpa, and I am not too steady at the moment. He helped me change, I just had to get naked from the waist up. I lay on my left side and then my back while she spent at least 20 minutes with the ultrasound on my chest.

My husband couldn’t figure anything out. He said some of the notes said my heart was of normal size, which sounds good. I’m curious as I’m now sleeping up to two 24 hour periods a week. That isn’t normal. It could be pain, though. My head still hurts a lot. My neck hurts. I just try and do things despite the pain. If I don’t, I will just sleep all the time. That’s no life at all.

Still waiting on the neurologist.

I did get a rubdown in Voltaren before we left, and it really helped. I need a cabana boy. Someone to bring me drinks and rub me down and act as eye candy. πŸ˜€ I wonder if my husband would quit his day job… nah, I want new blood! Ha ha ha! Okay, I’ve lost my mind! I do need someone to rub lotion on me and make certain I take my medicine. That’s what I need.

All right. I need to go look up some braces on the net. My knees and elbows have revolted enough.

Be good. 😊

I Have Two Speeds…

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My symptoms tend to subside in the summer to an amazing extent, now that I think about it. It’s surprising, considering the amount I hurt now.

I essentially have two speeds at the moment. Feeling as well as I am able, which is pretty alright! I can squeeze a good almost five hours out of a day if I rest up appropriately, three if I want to keep going. Β That is amazing. My hands hurt and my back, neck, and head are often excruciating, but distraction and movement are good.

Sleep has been a problem, however. I am exhausted at 9:00, I take my sleeping pill and at 10:00 I am wide awake until 2:00 am. Without the pill, I fall asleep and am awake at 2:00. Sleeping during the day means I don’t sleep at night. I’m at a loss. I guess I keep trying until it works itself out.

My tongue isn’t swelling any more, so perhaps it is just getting the last bit of this illness.

Okay, off to tackle the day! 😁 have a good one! Sure, it’s 1:00 p.m. I’m a slow starter. Today, anyway!

 

 

Return of the Porcupine

dk6cthn9wog2kMy husband and I have been referring to the pain in my lower right quadrant of the abdomen as my ‘porcupine’ for a while now. It feels like a giant porcupine is sitting there, as there is weight, and it doesn’t hurt unless you move. Then you have a stabbing, sharp pain.

My pubic bone is also back to aching. I’m tired. But I still feel pretty good. Better than I usually do. Because I’m usually aching all over, too. So, today I’m going to rest and see if I can’t prolong this winning streak! What a lovely surprise!

Yesterday I became curious when I ate lunch and became bloated and gassy again! A glance at the ingredients on the crackers reveals the suspect! Beet fibre! I’m allergic to beets! My husband knows this! I’m skipping them today to see if this helps.

My daughter is back at school, she seems better, still tired, though. My son is home again, still dealing with anxiety, I think. He has started testing for Autism, and is on the spectrum for sure. He is so precious, I worry. I know he has stomach issues, as autistic individuals often do, but with pain and sprains, I think EDS? I can’t help it.

My husband’s eyes turned red with irritation again. This time the eye doctor changed the glaucoma medication. We wait with bated breath.

I’ve had a blast playing makeup the past couple of days. I want to again today, but I should probably nap instead. I’m so torn!

My cannabis doctor just called and moved my appointment from the morning to the afternoon. They are always moving my appointment around. It is so irritating! My husband takes time off work so he can take me there. Then they change at the last-minute. If I could swan in anytime, I wouldn’t need the medication. Luckily, my husband took the day off this time instead of the morning. Only two people ahead of me, too. Last time I had to wait an hour and a half. It hurt. I was in tears. My old doctor retired to go into addiction recovery. Maybe now I will get someone who will stop trying to get me to cut down. I want this to replace my opioids, not the other way around. Plus, this guy was trying to shame me over my use! Having never used a vape machine before, sorry sir, there was a learning curve. I don’t exactly hang around with anyone who can show me. The stuff I threw out for the first three months was still green.

Anyway, I’m enjoying the heck out of myself. I’m puttering around, getting a few things done, but that nap will be coming up soon. I might even get a read of my book! I don’t know!

I hope you enjoy a respite as well, Zebras! πŸ˜™

Life is Good!

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Isn’t it nice when life isn’t a series of one bone-grindingly painful activity after another? We are on day three of feeling like a regular ninety year old person, instead on a ninety year old war veteran who has had every bone broken and has just been run over by a steam roller. I am getting rather tired, however, I could use a long nap.

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Husband brought home some snacks on the weekend. I can have dark chocolate on FODMAP, but the taste is too strong for me. He risked his health bringing me these almonds, as he is allergic. Anaphylaxis allergic. They are such a good snack! They fill me up so well! I’ve been hungry lately. Must be the moving I’m doing.

I’m really tired today. I must have overdone it, even though I tried not to! I had so much fun! Got things done!

That’s all for me today. Maybe more tomorrow, when I’m more awake…

Have a fun day, Zebras! 😘

 

Feeling Okay

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It’s strange to wake up a couple of days in a row and not feel like you had been locked in the trunk of a car overnight. My back is still sore and my breasts have been inexplicably tender for the past couple of weeks. The nausea is still present, but quite diminished, which is a treat! However, the pain is so much less. I feel normal?

I did add to my troubles yesterday when I had dinner. My husband feeds me a half a cheeseburger with bacon for dinner on Saturday. We have been discussing the size of patty for a year now. I told him he needs to make them thinner or remove the bun. He grudgingly removed the homemade bun, but it was back last night. Knowing he went to the effort, I tried it. Wham! As I opened my mouth, and then wider I could hear the creaking of my jaw and then felt the flash of pain. I felt the whole bottom part move over? Is that a thing? I don’t think my jaw opens smoothly, it opens partway, then moves to the side to open more. I could hear the grinding and clicking, and then a snag. But the pain! I will speak to my dentist when I get there. I had a pretty bad headache last night, but I’m just a bit sore today. Soft food.

I did get lots of stuff done yesterday! Played around with my makeup, got some shots for my Instagram, Beauty blog. My daughter harassed some people to ask why they aren’t following my blog, it was sweet. πŸ’œ I must be dying πŸ˜‚

Vaping is the activity of the moment, more makeup (lots of stuff dropped this week) and hopefully I don’t try to overdo it!

Wishing you some pain diminished moments, Zebras! πŸ˜™