Muddling along

There’s really not that much to update, but I’ll try and tell you all what’s going on.

I added to our complaint about how I was treated in the hospital, I was upset when that wrote me back saying they couldn’t fine my original complaint. At least they wrote me back, perhaps I’m now in touch with people who can make a difference. It’s upsetting that I had to say I felt my disability was ignored before I got the attention of someone. Yes I am considering writing to the States Disability board who enforces the ADA (Americans with Disabilities Act) We are now in the process of writing our a letter that will be sent to the hospital and Medicare. I haven’t contacted the state about my disability being ignored before now is because Medicare often takes care of that. We will then be sending the letters by registered mail so we get a signature that it was received

This has been incredibly hard on me since I do not remember a lot of my hospital stay. I don’t remember the first time I was going to be discharged before I was ready to be. However, I do remember the next day when I was forced to be discharged before we knew how the opioid they had just given me would react with me.

Forgive me if I’m not saying all of this with the proper grammar, I’m still incredibly upset about it all. The email I received stating they had no record of my original complaint has been a huge trigger. I need to get all of this resolved. I’m trying very hard to be a good advocate for myself. People do not understand how very hard that can be.

I have felt that my migraines have been less intense. About once or twice a week I had one that is untreatable no matter how much medication I throw at it. But I’m having Yellow days most of the time. (explanation of the traffic light system for rating migraines can be found here) That’s a huge difference. I don’t know if it’s because of the reintroduction of Botox, the nerve blocks, or the increase in medications. Which ever it is, I’ll take it. I just hope it gets better and better, all Yellow and Red days is simply unbearable.

I’m having some huge cravings for sweets, I don’t normally have that. It’s weird and it’s bothering me… it freaks me out to gain weight after I lost so much. I’m trying hard to eat as healthy as I can, but it’s even harder when I’m not able to cook for myself, and I’m tasting things differently. Foods I normally love just taste weird. That can be a side effect of one of my meds, but it’s crazy that my oatmeal and butternut squash taste odd. Why can’t sweets and fried foods takes weird? I really try not to eat either of those, but lately I’m not succeeding all the time. I’m also much more constipated than before, I can’t help but this is also a side effect.

We’ve had a lot of unexpected expenses lately. Plumbing issues, needing to replace the AC in the casita. I sure am glad we have an emergency fund, but it will push back being able to get the yard landscaped, and replacing doors and blinds. That makes me a little sad, but it won’t be put off forever, and we can still get some of it done. (crossing fingers)

I should close now, my head is ramping up and I’m almost finished with this Spravato treatment.

Hope all are good out there. I’m not getting email notification when most blogs post so I need to take the time to check on you all.

Hope you are having a spooky season.

Better day, kinda.

I had a better mental day today, physical kicked my but!

No flash backs, and was able to really sit down and talk with Stuart.

My allergies are out of control! It appears I’m now allergic to my cat. It’s so hard. I’m determined not to re-home him, but I have to find an antihistamine that works! The pharmacist told me about a prescription one, I’m going to ask my doctor.

If this doesn’t work I’ll see if I can find someone to bathe him, or shave him. Anything!!

Right now I’m spending most of my time in the casita (my studio I rarely use, but that’s a different story). I’m lucky I have somewhere to go, I have a much higher understanding and empathy for those I know with a cat allergy.

It’s late again, and I’m awake.

I’m scared.

Not the same reason, thankfully.

I’ve been having vertigo on and off all night. Waking up in the middle of the night with vertigo really sucks!

So I’m scared.

I got the latest COVID booster and my first shingles shot (I didn’t know it was a two shot vaccine… Ugh). My shingles shot side is already so sore I can barely use my arm. The other side isn’t bad at all, I feel it, but it’s minor.

Oh I did a little bit of art today, that was nice. Not finished, and I’m just covering some boxes with a mixture of torn newspaper background, with paint added in a decorative fashion. Some intuitive art.

I also sent a special complaint about the security guard. I strongly incouraged them to give their security personnel better training on how to deal with patients, especially disabled patients, with an emphasis on dealing with invisible disabilities.

I didn’t say it, but the way I worded it let them know I’m an advocate for myself and I’m not afraid to have his they deal with the ADA investigated.

I may be afraid, but I’m still strong, and brave.. even if I don’t always feel it.

I’m afraid.

I’m writing this on my phone.

It’s late.


I should be asleep, or at least trying to sleep.


Today has been just a bad day,
an emotionally turbulent day.


I’m afraid to go to sleep.


Reading hasn’t been helping.


Are you ever afraid to sleep?


I’m afraid he’ll be back.
That security guard looming over my bed,
saying things I can’t understand.
His face contorted into hatred.
It was obvious he didn’t believe me when I said I’m deaf, but I couldn’t hear him.
I found out later he said “You we’re just talking with them!”


Does me talking mean I understand their words?
Does me saying “I Do Not Understand” , mean I can hear?
I could see their actions, I commented on them, does that mean I heard them?

No!
No it does not!

For a while after I got home I had nightmares.
I was afraid to sleep.
Today my emotions were in a bad place.
I feel useless.


A vestibular migraine looming over me for a month, makes things worse.


I’m causing more issues for Stuart.


I’m overwhelmed with guilt.
I’m hurt
I’m sad.


I’ve been pushing it down, but tonight it’s back
I’m afraid


Are you ever afraid to sleep?

I’m 59 years old and I hurt all the time
For 30 days I’ve had vertigo every day.
I’m losing muscle tone
My thighs seem weak.
If I’m like this at 59, how will I be at 69?
79?
Do I even want to know?

Each night I make plans for the next day, it all rarely happens.


I’m tired.


My quality of life stinks.
It has for a very long time.


I’m so very grateful for my amazing support
I’m privileged.
So why am I so sad?
So mad!?
So scared… all the time.

Are you ever afraid your life will never get better?


Are you ever afraid?

Do I deserve to be treated the way I was at the hospital?


I’m afraid.


Please don’t say I need to do more about this.
I don’t have the energy, and I don’t know their names.
An official complaint has been made.
My only goal is to help prevent this happening to someone else.

No one deserves it!


Even me.

I’m still afraid.