I do have some good news! The EDS clinic called yesterday. They wanted my GP’s information so he can be contacted for more information. At least they’ve heard of me! My husband called back, as I didn’t get the call.
My head wasn’t as bad this morning when I woke up, but the pain progressed as time has. It’s been two and a half hours and I can feel it settling in nicely. My husband did get a response from my doctor, and apparently whoever answered the call said there is no way it could be chiari malformation because it would have shown up on my barium swallow (?) I really wish he hadn’t said anything about my fears. I also have a skull fracture at the back of my head that may be affecting things. It’s been raining here all week, is sunny today, and is supposed to rain again tomorrow to Sunday. I thought that had something to do with it, but I’m hurting again today, so that doesn’t seem right.
I thought I’d blog early before the emotions and pain get too tangled.
I know I sound like an asshole much of the time. You’re getting real, unvarnished here. What I usually hide. What I find so challenging is, I should be falling back on the friendships I made years ago. But I didn’t make those. I’ve explained my weird adulthood before. Moving across the country, my ex-husband alienating any friends I did have, working too hard and making poor friend choices led to those relationships falling apart. Finding a group as an adult and being drummed out because I was accused of being a drug abuser (I wasn’t, someone decided an increased prescription dose = me freely taking as many pills as I want. I don’t talk quite as much as I used to, but that was a side effect of that stupid medication as well.) A couple of long – term friends, but they are spoonie, too. We rarely see each other or even talk. But they are really good people.
Some of the friends I did have don’t know what to do with me now that I can’t go out. They don’t even invite me over when they have movie nights at home. I could do those. I don’t even hear from them. Not even casual emails. It’s as if I ceased to exist.
My Mom tries so hard, bless her, but I need a Mom.
My husband is so busy looking after me, I rarely see him.
I really try to be a fun, happy person most of the time. I wonder if these episodes are just too intense for some people. It’s just right now I need friends most of all, just knowing someone cares means a lot to me. I’m probably looking in the wrong place or asking for the wrong things.
I just find so many are suspicious or angry or defensive, you cannot approach anyone. It’s harsh out there, and in all honesty, I’m getting tired. I’m getting tired of having my head bitten off when I ask for help. I’m tired of having it bitten off when I offer help.
A friend of mine, a friend I went to elementary school with, is a nurse. She is one of the most caring people I know. She wrote on her Facebook wall “I must be the first person in the history of the world to cancel a doctor appointment because of not feeling well.” Now, I don’t demand everyone think about me before they post something, but that hurt, it was so tone deaf and out of character. I mean, I’ll live, but…
Okay, the head is hurting time to vape. Nausea is rising.
Have a great day, Zebras! 😘