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!


Later that day…

I’m feeling a bit better after a nap, but I am still in a lot of pain. My eyes are really sensitive to light. My flipping teeth hurt.

I am feeling really isolated and alone. Facebook is just nasty lately. Not personally, but it’s so negative. You can’t express a point of view without being slammed with the other point of view. And if you differ? Good bloody luck to you! Yikes! I’m done.

I don’t have the support I was searching for. I really don’t know what I’m doing wrong. I don’t know what makes me so unlikeable. I try really really hard, but I’m always that person on the sidelines. I don’t mean to sound melodramatic. I remember one of our extended group had cancer, and such a fuss! People sent her care packages and knit her hats… I don’t want things… but an email? That would be cool. And not from my mom tied with obligation. My mom tries to be there, but she follows me everywhere on social media, not understanding it feels like a burden.

I feel like deleting everyone but me on Facebook and keeping the memories of all the funny stuff my kids did.

It’s really dark in here, and not just because the lights are off.


On the plus side, I’m covered in melted chocolate and popcorn. I get cravings with the migraine. Probably not the best for it, but at least I went down swinging.


UPDATE: I  took my medication and I just wanted to clarify a couple of things.

I want my mom to be my mom and my friends to be my friends. It’s not that I don’t love my mom, it’s just not her role, she needs to be in her place. I can’t have her out of place, it’s too much for me to cope with. I could be babbling at this point..

I am not sitting back and waiting for people to call me, usually. Now, I am, as I’m incoherent. In the past I didn’t.  Also, now, I’m just not sure I’m much an asset. Be my friend! I will whine about my pain and pass out! ( attempt at humour) though there are those who are silently there, I know.

I think maybe I’m just a mess at the moment. 😄🍫🍿