I’m a 10 out of 10

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You know you’re gearing up for a migraine when you lecture a stranger in your dream for wearing too much perfume. I even gave her the speech on the proper distance you should be from someone before you first detect it. I was quite thorough. The proper distance, by the way, is conversational distance. That is where you should first detect someone else’s fragrance.  None of this where they walk into the establishment and you can taste it before you even see the person nonsense.

Anyway, I tried to play with makeup yesterday, but the migraine started creeping up. I continued, because it had been over a week! I played for a bit, then finally had a nap. Slept from 1 pm until 8:30 pm when my husband came to bed. I was so restless and uncomfortable.  I couldn’t settle my stomach. I didn’t have anything solid yesterday except for oatmeal for breakfast.

I couldn’t sleep last night, I was just awake, restless. I keep trying. I’d dissolve into tears every once in a while, the pain was so bad, and then it would dissipate. Then ramp up. Ugh. I would lie there, just trying to be still, trying to distract myself. Reading cat memes. Reading long form news stories.

I was supposed to have Botox injections for migraine and for pain management on August 22-ish.  Since then the migraines are back, I’ve had my first period in fourteen years, (Mirena) and I’m wracked with pain.

I have not heard back from the pain clinic. Realistically, it’s been 3 weeks? I think? It feels like an eternity. I feel like most of the pain right now is in the back of my head, whatever we are dealing with there. One month until my neurologist appointment.

It’s also been close enough to a month that I believe it is time to start harassing the EDS clinic again. I think we shall do those things, see where that leads us.

I’m interested to see if I have a period next month. The question: was the Botox contributing to my lack of menses? How? Dunno. Correlation does not equal causation yeah yeah. We will see.

Let’s tackle one thing at a time. I will certainly bring it up at the EDS clinic, I don’t know if they have a GYN on staff, but I will ask for a referral straight away, as well as for a gastroenterologist, as that doesn’t seem to be happening either.

Happily, however, my stomach seems to have settled and I no longer feel like throwing up my toenails. Yay Gravol!

Short term, I don’t seem to be sleepy. Or I am already dead. I occasionally find a comfy spot and all is happy for a while, so things aren’t terrible. I’m going to focus on medicating myself today, listening to podcasts, and maybe tv if I can. Tonight I’m definitely taking a sleeping pill, and back to that if I need to.

I was thinking of a warm bath, but moving…

I can do a month! Right?

And however long the EDS clinic takes…

💜

 

 

Head Pain

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Aaagh My head! My head and neck are really sore. I’m just in so much pain. The back of my head really hurts. I fractured my skull in 1992 after a fall down some stairs. Like, a flight and a half. I saw my boots silhouetted against the sky. And I remember nothing. I woke up 10? Minutes later. I was taken to the hospital when fluid was leaking out of my ears later that day. I had some bladder incontinence for a day, but then was better and they sent me home, no follow up. But that’s where it hurts.  I’m also quite nauseated.

I rubbed Voltaren on my neck last night. Oh! Heaven! 😍! My neck is so much better. It may be why my head hurts, as I tend to have migraines when I relax. I want to be put in a harness and hanged by my neck so I can straighten everything out. My husband suggested he crack me like a whip to put everything into place!

I’m in a happy mood, my makeup guru drops a makeup collection today! I’m so excited! My friend made my week the other day. She went blonde, and said I had inspired her, because I have so much fun on my Instagram and beauty blog with different lipsticks and makeup. Wait until she sees my new lashes! Also, she’s quite a beauty. I’m flattered to have inspired someone so fabulous!

I have an appointment with my therapist today, and I’m slightly displeased. Mildly miffed? They have a 48 hour cancellation policy, as one does, and I understand it’s to keep those reluctant or anxious from canceling at the last minute every time. However, I don’t know when I’m going to be hit with blinding pain every time. This is not a therapy avoidance tactic, and although my therapist is kind enough to meet with me by phone, I am not exactly getting my $200 worth that I am paying out of pocket. Anyway.

I’m in tears from pain now. Still happy, though. You zebras know what I mean! Just vaped. Lol! 😂

Have a good day Zebra friends!

PS. To whom it may concern: I didn’t see any owls on my Facebook. If you go to my WordPress page, the icons at the top? Should take you directly to me. My avatar shows half my face. Also on my WordPress site is a contact form to email me so you can send me your name, I can look out for you!

My head is mushy and um… sorry. I am intelligent.

Seriously?

Just trust me Go here and read this article. This guy thinks women can glue their labia together and it will stop menstrual flow. Uh huh.

Painsomnia got me. I’m so annoyed that I can’t really talk to my doctor about this until I see him in June. I see him before this for my Botox treatment on April 4th. But we don’t have the time to lay it on the line and really go through it all. Maybe I should bottom line everything in a post, even for myself. I have a couple of options, as I see it.

  • I can douse myself with sleeping pills, take my breakthrough pills, sacrifice my steadiness for a bit of loopiness, see if that helps.
  • Or I can call his nurse, who is kind of brusque and see what she advises.
  • Suck it up and quit complaining
  • Whine and complain until I’m friendless and on my own.

I don’t like number four very much, and I’m not very good at holding my tongue, so three is out. I think I will start with one, and progress to two. I took a breakthrough dose of my pain meds and it did nothing, since I am allowed two I will try another, it’s been over three hours! I suspect the nurse would suggest the breakthrough meds first, anyway.

My back hurts so much I can’t sleep. I just want to cry. I don’t even know what to do to make it stop. I keep thinking heat, but that makes me wince. I can’t even be still.

Since sleep is useless, I’m going to work on a pain inventory page for the blog. I think it will help.

I hope sleep is not eluding you, fellow zebras! (Respecting time zone differences of course!) 😘

 

So.Many.Needles.

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My Botox needles, ready to go, taken a couple of years ago.

One of the things I do to help manage my pain is get Botox injections every ten weeks. Just like for migraines, which I am also treated for with Botox, at the same time.

So this morning I had to drag my ass out of bed. I was not amused. 😁 I was really sore! I wanted to have a quick wash. In fact, I’d wanted a bath last night, but that just was not happening. I was too sore. I tried to move today, and my back spasmed, so I asked my son for a warm cloth to wash up with so at least I won’t be smelly, and I get the third degree! Why? Does it have to be warm? Why? Ugh! He’s 12, it’s not like he’s a baby.

After I convinced him of what I needed and managed to dress, I was able to hobble downstairs. Must have been so funny to see! Me hanging on to husband and kicking my feet out trying to loosen my knees up.

We got to the hospital and our appointment, and there is a nurse? Social services worker? I don’t know who she is, but ugh. She’s not kind. She calls you to your appointment, then disappears from sight. She doesn’t even sort of wait for you. Then she waves you to the treatment room. Hm. Onward.

The doctor comes in with two new doctors who are taking extensive extra training in Pain Management. We talk about how fascinating I am to have Ehlers-Danlos Syndrome, diagnosed late, even though he had been seeing me ten years. Hm. Hm. Botox injections are tricky things, only work occasionally, hm.

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The aftermath of needles in the forehead

Hm. Lucky me. And I am very lucky.

Then we start sticking needles in my head. As you can see from the photo, he didn’t clean me up before sending me home.

After the front, we move to the back, and he injects some near my jaw, I think,  but truly I just spaced out for a while.

I know we then did some near my neck and shoulder,  being careful around my throat so I don’t stop breathing. I hear that can be bad. We continued to my lower back focusing on the lower spine area, and the top of the buttocks.

At this point I have to roll over. Never an easy task in a gown on a narrow slab of table. Now imagine you want to preserve some dignity.

Here is also where my doctor starts to show off. He says to PMDIW (Pain Management Doctors in Waiting) “she has an entrapped nerve and is very sensitive!” As he touches my pelvis, the right lower quadrant, and I scream. The PMDIW look horrified and blanche under their South Asian complexions. They look like they want to bolt. I don’t blame them. Doctor moves on. He terrorizes my pubic bone. My face contorts in a silent scream. Husband grabs my hand. The doctor injects me as I sob. I tell him to keep going. Husband asks if I want a break, but I don’t. It will just be longer, then. The doctor starts on my right inner thigh. He pushes a bit. I wince. He moves over. I scream. I quickly slam my hand over my mouth, conscious of where I am,  but it hurts so damn much. I’m just sobbing now as he finishes the left leg, worn out from the pain, spacey, tired.

The doctors all leave. Husband helps me get dressed. That not a nurse or a social worker comes in and asks if I’m okay but is gone before I can answer. I can tell she didn’t care anyway. I’m known as the screamer. They tease me that I’m bad for business.

One of the PMDIW wants an appointment with me next week to talk about how sensitive I am in areas. It doesn’t seem normal not to be able to touch someone in an area, like my inner thigh or my abdomen. So maybe we can do something? I can hope!

So, I’m sitting here semi-bingeing on sweets, while my dear husband naps beside me. It’s bliss! 😍