Yay! Pain is Fun!

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My nerve block from the end of May is wearing off significantly, and I am in pain. My face is very sore, making eating and speaking uncomfortable. The back of my head really hurts, traveling down my neck into my shoulders. I’m trying to be as calm and relaxed as possible. I think this will mean avoiding people for a bit. I’m very much an introvert, and I am quite sensitive. Knowing this about myself helps to make good decisions about setting boundaries. I’m not exactly great with boundary setting, but I need to work on this for my own health.

I tried the Cefaly on cycle 2 and found it surprisingly gentle. Almost more gentle than the gentle cycle. Electrode placement is so important. I’m now doing two cycles a day. It is helping so much. I’m still lying in the dark, but can watch TV, so am not bored too much. Using a tablet is tough for too long, and my vision is quite blurry.

My digestive system is very grouchy. I hope I see that GI doc soon. So uncomfortable. I found some exercises for my pubic bone online. I will try those starting Monday. I don’t want to hurt myself knowing we are going to the Banksy exhibit this weekend.  My first non-doctor outing in a year!

I approached my doctor about a breast reduction also. I don’t know how likely, but I am so uncomfortable all the time. I have sores, I can’t wear a proper bra because the band hurts my stomach. The straps even of a bralette dig into my shoulders. Despite the EDS, I have had 10 surgeries, four non-keyhole, and only one took a bit to heal because it was at my waistband.  Maybe? I sent an email afterwards, so we will see. The EDS clinic doctors seem super nice!

So, I am waiting for my treatment to begin, essentially. Saving my energy. I feel like garbage, but I have felt worse. I need some me-time. I’m pretty exhausted from trying to be social. From trying to make friends, from battling sheer assholishness. Putting up walls for people who refuse to accept boundaries. I didn’t realize it would be this much work to explain and explain again things that seem so simple to me. Like, please don’t ring my phone repeatedly after 9:00 PM because you feel chatty. Or ring my phone repeatedly at all. Or write nasty comments on my Instagram page because I haven’t returned your DM. You can see me writing about chronic pain.

I’m tired.

Happy Pride Month!

🦓

Woke Up Like This

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This is me just after I woke up and took out my mouth guard and took off my CPAP machine and pulled off my sleep cap.  This is because my friends on Facebook were teasing me about looking pretty awesome even though it was hot and sticky and I felt awful. I thought this would be a good ‘Me at my worst’ photo.

There is actually a reason for my youthful facial appearance, and it has to do with EDS. Because of our faulty collagen, some of us do maintain quite a youthful appearance.  I’m not certain of the mechanics of it. But it’s a thing. Also, I’ve essentially been in a darkened room for 15 years, wear that damn sunscreen! And I look after my skin as a hobby.

There are some things I am not happy with, of course. I have a wattle under my chin. That may be from the 120 lb weight loss however. I’m exercising my face to try to lose that. I have a pronounced line around my neck that I dislike. My arms are a bit flabby, my boobs are really saggy, I would like a major reduction. My stomach is often bloated from gastroparesis, which I haven’t been officially diagnosed with, but I have. I would like my hair to stop thinning. And the really dry skin that cracks, if that would stop, that would be cool.

I acknowledge these things are nitpicky and minor, and I would only have necessary surgery to correct anything, such as breast reduction, as that may help my back pain or my constant rashes. If I need intestinal surgery, it likely won’t help my gastroparesis. I’m probably stuck with that.

 

We decided to buy my husband a Nintendo Switch for his birthday, only a month early so the kids could play this summer. It was supposed to be here Monday, but it showed on Friday instead. Everybody is rushing through their chores. 😂

 

I think I finally figured out what I was trying to say about jealousy so I can finally drop it. You can’t pick and choose what aspects of my life you want to be jealous of if you’re going to revile me. If you are going to call me a monster or a saint, it isn’t fair to analyze a microscopic part of my life. I’ve made mistakes, some big ones. But if you’re ignoring the big picture, you’re missing everything. And I think that’s what fascinates me about people. Why I dwell on things like this. It’s a puzzle to me.  Because I know if people took into account my whole life they would not be jealous.

(Jealous of ME? I’m nothing! This must be getting like bragging, but I’m sincerely not understanding, I’m so unimportant, I don’t know why anyone would bother, maybe they don’t, though and I have too much time on my hands. This is my conclusion. People often bring this up to me. 🤐)

 

Anyway. I’m spending my weekend relaxing. I have a birthday makeup thing to do for someone! I need to see my kids, my husband. Have a bath.

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Enjoy!

If you want me to do makeup in your favorite colour, or your favorite style, let me know! I’d be happy to try! 😘

Disappointment

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I am so disappointed. I have been looking forward to this doctor’s appointment since we booked it. I was thinking that maybe we could finally address some of the pain I’ve been dealing with. If I could get rid of some of the sensitivity in my abdomen and hip, inner thigh, back area, I would go a long way toward being more mobile and living quite a different life, I think!

But the doctor wasn’t there.

To be fair, I think the issue may have had something to do with him being beholden to another agency. They didn’t tell us anything, but you know what it’s like after a number of years, you learn what to listen for. So, listening in, and knowing he was having trouble when he booked a room for our appointment, he likely didn’t have a listing of his patients (confirmed) when he arranged to see people. Our theory is he wasn’t being paid by the hospital,  but by another agency, which had say over his schedule, just based on what whispering we heard. His interest seemed to lie in a certain area of pain management, which is why he wanted to see these particular patients. He is keen, eager and excited to try to help. I love those kind of doctors. He was so kind at the appointment earlier. The plan is to catch up next appointment, which is April 4, or they will contact my husband if the doctor can meet earlier. I know I jinxed it when I said I didn’t want to go to the doctor this morning! 😁

My husband is at the eye doctor himself, his eyes seem to be clearing up. It’s Friday. I’m unwinding. Going out with a friend this weekend, although I don’t know what we’re doing. Probably lunch!

Found an old photo of me, probably at my heaviest weight.

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Me, with author Lindsay Kelk

I was probably just under 300 lbs here. It’s cropped weird, but I had to get all of me in there. I stopped at just over 300.

And me this morning.

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Waiting for the doctor…

204. I’d like to go to 170, but I’m not all anxious about it in case I get sick again. Sorry about my glamorous outfit, but hey, it’s the doctor! Also, why didn’t anyone tell me my boobs were so huge? Ugh! I need a better bra.

I will do a post about my weight gain/loss another time. Short, though. I used to be quite thin. Medication can do quite a number on your body.

I forgot to mention, I was so busy the other day, I started getting changed, but I only got my pants off! 😁 I wasn’t doing anything too earth shattering, just easily distracted.

Have a great day!