Stunned.

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Things aren’t great here. I’m coping. But I’m just coping. That is all that is going on. My life has pared down a lot from even where it was before. I think that was necessary, for now. Let’s just be real about what’s up.

My back-of-head pain seems to be back as it was before. Now, I can only speculate I had a reprieve because of the BOTOX injections. I am nauseated and dizzy when I sit or stand for too long. I do see the neurologist in two and a half weeks.

I received my date for the EDS clinic. April 2, 2018. I could weep. I had somehow thought December. It doesn’t help that I am on the super-duper special accelerated list, either. I am on the cancellation list as well. They are booking for the regular plebian Ehlers-danlos patients in November, 2018. This is supposed to make me feel special. It does.

Currently searching high and low for a gynecologist. This won’t become a crisis for two weeks, yet.

My husband has been in touch with the pain clinic. They do not know what is going on, but are working on things. I can’t worry about that.

My daughter has had the flu now, recovered, and is perhaps catching it again since school started last week. My son’s autism is really not good.

I have been organizing and reorganizing everything I can get my hands on, because it soothes me.  I haven’t been able to talk to anyone lately. I just can’t stand any pity. I don’t particularly want any advice either. I mean, unless it’s really helpful.

What I would love is some support.

I posted on Facebook that the pain was so bad, I was really struggling. I took a nap. I receive some push notifications, and one person, I don’t even know who suggested I “seek help” and it sent me over. I haven’t been back. It hit me so hard just then. People don’t see me at all, do they? How many people think I’m depressed? Seek help. Yeah. I will get right on that.

I do, actually, feel quite peaceful. My husband needs to run interference for me for a while, because I can’t people, but it’s only another year of my life to waste.

Spotify, Netflix, these are my new best friends! Oh! I can listen to music again! So neat!

💜

Doubt, Pain and Uncertainty

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Yesterday went slightly better for me. Strange, because we started the day with the lower THC marijuana, so I had lower pain relief, and I was hurting slightly more. I wonder if I take better care of myself on these days? Something to think about. I made sure I took in proper nutrition, and had some crackers my husband had bought over the weekend with some cheese, and I felt less tired. Hey, now! If I can time this right, perhaps I can work around the nausea and try to have some better food and thus, better energy. I’m pretty good at timing my vitamins now. One thing at a time.

I had a chance to play with a new makeup collection – the Urban Decay x Basquiat Collection – and had a blast. I didn’t make too much of a mess. I was so pleased! I played with new lights, and was happily able to take care of some personal grooming such as shaving my legs, applying a face mask, and I was going to settle down to write a few words for this blog when… okay, I fell asleep. I thought it was just going to be a small two-hour nap, just until my husband came home. It was four o’clock, after all.

Eight o’clock and chicken tortillas in my face indicated this was not to be. I was in quite a lot of pain as well. My abdomen is really bothering me, as is my neck, although it’s eased some. I’m coping. I mean, derangedly, but I’m coping. I have huge acne sores. I’m stressed all to hell, but I’m coping. I just don’t know what else to do except put on makeup because it’s fun, take photos, because that was a lot of work, and the photos are fun, too. Distraction.

I’ve cut my Beauty Blog to three days per week, Monday, Wednesday and Friday now through the month of May. It’s heartbreaking, because it’s so much fun, but I had to give something up. Nobody would take my kids 😃 Likely because I didn’t offer them. My daughter is struggling a bit with her Autism and anxiety. Mama to the rescue! Poor kid. When Dad has Autism as well, it’s difficult because he wants to help, but he isn’t very adept at relating interpersonally. His approach is completely logical. Not necessarily what one needs in the moment. Fortunately he relates well to the hyper-logical boy.

Off to play for a bit!

Stay stripey, my Zebra loves! 😘