Summertime and the pain is …

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My symptoms tend to alleviate somewhat in the summer. It doesn’t mean I’m cured by any means, but I find my knees don’t ache as much, nor do they pop and crack as much. My muscle aches aren’t as intense. My elbows don’t feel as brittle, my hands ache, but they don’t hurt as badly as they do in December.  My neck has been quite a bit better, with my head pain bein not as intense, although that could be the Botox injections.

I heard from the EDS clinic after we followed up. They are waiting for info from my doctor, which they requested May 9. He swears they didn’t receive it. Waiting time for the clinic is 6 months. They have wasted 2 months for me. I am so angry. My husband is handling this because I don’t think I can be nice about it.

My cannabis doctors office called to reschedule my appointment on Friday from this Thursday to tomorrow. I was upset, and I let it show in my voice, it was trembling. I said I was upset and my husband would have to call back because he has to bring me and he has to take time off work. Well, this person got all snippy with me! She exhaled sharply and told me he couldn’t book appointments for me. I protested he’d been doing it for the three years we’ve been patients. She relented “Oh, yeah, I guess he is on your file” Fine. So husband calls, and the only appointment I can get before my expiry is the one offered, and it isn’t even with my regular doctor! Now, I do have some responsibility in this, as I had to cancel my appointment because I was ill. However, we book 3 weeks before my due date (June 29) because there’s a chance I could be ill. They could only offer me the 13th. I need to be renewed before Monday the 17th. They have rescheduled the last three appointments at the last-minute, and it is infuriating. I believe they have rescheduled many more. I have rescheduled two because of severe contagious illness. This, plus the location of the building means I can’t make it to the building unless I have a certain amount of stamina. The building is on one of the busiest corners in the city. (Yonge-eg for anyone who knows Toronto). So, either 1. my husband has to drop me off at the building where there isn’t parking and there are no seats in the lobby, so I have to be dropped off and have the stamina to make it up the stairs and to the office.  2. I go to parking with my husband and walk to parking with him. 3. We rent a wheelchair (or buy) and then the parking situation becomes more realistic. 4. We take a cab to the office building, which drops us off in front, however, we have a long wait to hail a cab, I have nowhere to sit (except the floor) and the walk to the taxi stand is just at the furthest limit of my walking ability. So we will take a cab and I will suck it up. I’m so brave! 😄

I guess I’m so sick of after all that time the first doctor spent treating me like a drug seeking video game player, now they’re upset that I’m actually disabled and need assistance because of it.

Even though the pain might be less, my joints are very wobbly.

I think it’s rainy this week, which is making my head sore, which is making me kind of grumpy. I should probably stay off social media. Find something else to do.

I’ve managed to do a bunch of organization this week. I feel so much better to have lots of things handy and knowing where things are. I’ve organized notes and snacks and email and…everything! I even made lists for everything I needed to speak to my husband about. We arranged for him to come to bed at 7 on Saturday night so we can hang out together. It was great! We got so much done, I don’t think we will need to do that much chatting again for a long time! Ha ha!

I’ve been going to nap for an hour and sleeping for four to six. I imagine my body is healing. I am enjoying it. I feel stronger and stronger.

Dang this headache.

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