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.


4 thoughts on “Muddling along

  1. Registered mail absolutely helps in keeping stress levels lower. I’ve been able to say ‘let me check on who signed for it’ and I get a ‘let me look again’ answer really quickly.

    I don’t remember reading about the traffic light system but what a great idea to keep things simplified and easily understandable.


  2. Rita McGregor

    How did they not get the first complaint? Goodness! I’m glad you did the follow-up so discovered that and could keep on top of it.
    My entire life is yellow or red–for some time. Bleh! LOL!


  3. The stoplight system sounds interesting. Going to check it out for my sorts of pain!
    Good thing you checked about the complaint. More work, of course, but good to get Medicare and Disability alerted to this behavior. Stuart was there; he can provide input as to what happened that you don’t remember. The memories might be blocked by the treatment; your mind trying to deal with the pain and trauma. They may flood back — something might trigger them; or they may remain in the shadows.
    I know it’s easy to say relax and be calm about that; I have blip outs (and huge chunks of my life) for which I have no memory. Sometimes, something will trigger, and zap: an incident, a feeling, a remembory will flood in.
    Wish these were more pleasant ones, but as I’ve said for years: I have a good memory for bad things, and a bad memory for good things. I lost my childhood in my teens ( or younger). Not to make light of your incident — it must be scary, frustrating and leave you feeling strange.
    Are you having any sinus issues? My mother’s sense of taste and smell were impacted by a series of colds and sinus infections. Of course, the meds might be doing it. Or the new allergies causing a change in your sense of taste. Don’t worry about the cravings — these might pass. I know you have issues with gaining weight — I understand why the thought is troubling. But, if you keep the indulgences small (hard, I know). Can you eat dark chocolate? That is good for sweet cravings and has some good properties. Can’t remember if you can eat it.
    I should go; need to send an e-get-well-card to a friend who is really sick with a cold or the flu. Luckily, knock on my wooden head, I don’t seem to have caught it from her and her husband last week.
    I will try and send you an email, too, soon.


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