The cold hard facts and keeping positive

Helloooooo Everybody:)

Old Al just popping in to give an update on things in my neck of the woods. I’m still chugging along and doing my thing. Enjoying life with the hubby, sons and my fur babies.

I attempted PT for a minute. Turned out it was more of a stressor on my body then one would have thought.

While I do recommend everyone do PT to keep mobile, I now see where I should have went at my own pace vs letting them push me past the limits I knew were too much.

I’m not blaming the physical therapists I worked with, I’m blaming myself. After all I am a grown ass woman and am in no way, shape or form afraid to speak up for myself.

The only thing I could say (in my defense) is that I was trying to push myself, in hopes to get back to prior progression status.

Was this stupid AF? Yes it was. I’ve always been a doer and truly believe my hard headed ways have kept me walking.

I went to PT for three sessions, every time leaving with a feeling that someone had whipped my ass. Silly enough as that sounds, I figured it would pass. It didn’t, I wound up calling my neurologist who was out on vacation. No worries there, they had someone covering his patients while he was off.

Fill in guy was very nice and knowledgeable of MS. I felt comfortable with him. He ordered a brain and cervicle spine MRI.

That came back with an enhanced, active lession on my cervical spine. This worried me greatly. I hadn’t had a an active lesion in quite a while. I have had flare ups over the years, but no active lesions in quite some time. I let fill in guy know that steroids didn’t work for me any more and I’ll probably need plasmapheresis. That was a Friday. My neurologist came back on Monday at which time I got in with him immediately. You know, to give my request of plasmapheresis. He wanted to try steroids first. He wasn’t quite sure where I’d get that done since our hospital was severely damaged in the storm almost 9 months ago. I figured ok, let’s see what he can drum up.

He said he would look into which places would be available. He did say, if you keep deteriorating go to the ER. That was actually the second time I had been to the ER. Fill in guy had me go and called ahead on Friday, at which time they told me the nephrologist wouldn’t be in all weekend.

No worries, no hurry, it’s not like I was bleeding out and in need of surgery. From what I’ve seen over the years with a chronic illness is, that there is no rush in regards to anything to do with said chronic illness. I’m quite used to this waiting game we play.

I was back in the ER, I wound up going in my pajamas and robe. This was very much NOT an Alex move. Truth be known I was just too tired and sick to bother with actual clothes.

By the time I got there I was so weak I could barely talk. My words were nothing more than a whisper. The ER Dr I had seen last time realized I was not doing well at all and got 1000 mg steroid drip immediately. Another neuro (mine doesn’t have privileges at the hospital) consulted and decided to keep me. With our hospital being in such a precarious state since the storm I was moved to another room in the ER. No worries I got this. The neurologist said he didn’t think plasmapheresis would help at all. WAIT ….WHAT?

I had plasmapheresis around a year and a half ago maybe two, why wouldn’t it work now? Mind you it didn’t make any earth shattering difference, but it did help somewhat.

What the ER neurologist left out was that it wasn’t proven to make a big difference with SPMS. Oh how I wish he’d have cleared that up, as I sat there thinking I was getting inadequate care, I got madder and madder over the next couple of days. ER neurologist also added Modafinil for energy. That is generic provigil. Which is a type of speed they give for severe fatigue.

So not only was I hopped up (to a certain degree) I was still falling alseep while sitting up. I was sleepy and VERY irritable. This is NOT a good go for someone with such a sassy mouth as mine. While I was respectful I made sure everyone within earshot knew I felt I was given inadequate care. I mean damn, had the ER neuro told me his rationale I would have known why he wasn’t ordering plasmapheresis.

Needless to say when my GP came to see me he saw devil Al. Not sure if I’ve ever touched on my relationship with my GP. He’s been my Dr for 18 years. I love him dearly, but never pull punches with him.

As he stood at the foot of my bed I let it all out. I let out about the inadequate care I was getting and asked WTF happened to the oath of DO NO HARM????? I told him I wanted out immediately!!! Needless to say he saw the level of distress I was in. He knew that if I was that upset I needed to be let go.

I was out of there in record time. Dr Nguyen to the rescue.

I went back to him yesterday for a follow up and was relieved to see he didn’t hold my shitty behavior against me. He suggested I go back to an MS specialist, stating that my MS has always been a difficult case. I’ve reacted poorly to most meds. With him saying that I took it seriously. My neurologist (while very MS savvy) is NOT a specialist who only studies MS. He also felt that going to a teaching hospital I would have access to the newest and most cutting edge treatment.

I took him seriously. He has been my GP since several years prior to DX. He’s seen the whole story play out right in front of him. His advice is very much appreciated and taken seriously.

On another topic (which is my original thought) I did some LIVE feeds and tried to stay active in my group. While I gave an adequate summation of events going on,I also tried not to bring my group members down. There is such a thing as TMI. After all I didn’t want newbies to be scared that this would be their fate. As we all know everyone’s MS is different. All the newbies need to keep pushing through and keep a positive mindset. I would not cast a dark cloud on their bright futures.

I also had a gem of an idea, it is to start a sharing program in my area. A sharing of assistive devices that are still in good condition. A lot of times people rehab and don’t need their assistive devices any more. While I was in the hospital my rolator came in the mail. My old walker Blue Bessie (which still worked) was heavy and cumbersome. I wound up putting her on FB marketplace for free. I didn’t need any money from it. I had already paid for the rolator, so why not donate it? Turned out A LOT of people in this area contacted me. It made me think of all the equipment from my late husband (Bob) that went to waste because it was left in my garage, only to be ruined and thrown away after the storm. Oh how I had wished i’d have put it to good use years ago. This thinking put the wheels in motion. Now to just make it happen, I’m hoping the general idea takes off.

So while this is a ton to shoulder at times. I’m still persevering and still positive that everything will happen the way it’s meant to be. Although I’d have given anything NOT to have to do that hospital stay, a great idea came from it. I still have my never ending faith that will see me through.

My positive message for this particular blog is, sometimes good things come from our darkest hour. That’s my positive pull🌺

Happy Friday folks

#onward#upward#doittoit#makeithappen

Author: mswithmsalex

A funny gals take on the ups and downs of dealing with MS. The stuff people don't like to talk about. The hilarious situations I've found myself in. I hope this brings laughter to a disease that isn't very humorous

8 thoughts on “The cold hard facts and keeping positive”

  1. I am amazed you manage to stay so calm under the circumstances.
    I’m one aggravation away from homicidal psychosis myself.
    The PTs probably don’t know the difference between attempting to achieve improvement and merely staving off further deterioration.
    Hang in there, and don’t let anyone give you any flak; no one knows better than you what your history (and don’t you love reciting that for anyone knew?) and current state is.

    Liked by 2 people

  2. I am sorry for my late comment. I want you to know that you amaze me. It doesn’t matter what you go through and how difficult it might be, you are still that strong and very determined person that does not allow any BS to keep you down. You are my role model Alex and you have helped me so much with different issues I was dealing with. I feel lucky to have you as a friend! Keep being you Alex, you know that unbreakable woman!!

    Liked by 1 person

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