The never ending story of prednisone.

When my doctor put me on prednisone last summer I was relieved and anxious for it to start working and making me feel better! 

It seemed in a matter of a month it really had turned things around. 

I went from my legs being so weak I couldn't get myself out of bed to being able to get up and to the bathroom on my own with the walker of course. 

Over time I stayed on them and patiently waited for my immunosuppressants to kick in. 

The doctors wanted me to do an every other day weening process which I agreed to as they said this way it would limit the negative side effects on my body. Sign me up! 

Originally I started at 80mg a day then was moved down to 60mg. 

Once the weening started I felt really crappy on my lower dose days. 

For instance Monday I was 60mg and then Tuesday 55mg. I swapped them out every other day and then would drop again by 5mg. 

Well this week (as you know if you have read this blog at all) started 50mg/10mg. 

I must also disclose that I have been trying to cut out sugar as indicated by the neuro and have been logging food into my fitness pal. 

That being said I've been feeling weird. 

This morning I woke up feeling shaky and just off. I decided to have a cookie and see if it helped at all. It did make me less shaky. I  checked my blood sugar which was 91 so it's not like it was extremely low or anything so I'm not sure what that was all about. And I managed to some bruise my finger which I think was from trying to squeeze more blood out then it wanted to give lol 

So anyhow I went about my day like I normally would but my legs were just feeling shakey and not as strong as they were last week. And I have been feeling increasing tired. 

I read online that could be a symptom of steroid withdrawal which I guess makes sense. Usually by week 2 of the new dosage I will feel better about it. 

In the meantime it's a high dose day and as usual I'm sweating buckets and can't seem to cool down regardless how much water I drink! Stay hydrated is what I keep telling myself but that also means pee 300 times a day because you are on a water pill. 

I just am trying not to worry or stress and just go with the flow which I am terrible at 

Naturally which brings me to my next topic medical (or not so medical) Marijuana. I've been reading a lot online lately about medical marijuana helping with the effects of severe neuropathy. 

I'm told the vaporizer will limit exposure to the lungs while the edibles will offer a full body calm that is equivalent to a massage. I honestly think I'm going to speak with my neuro about this at my next appointment. If I'm being honest it's been years since I smoked and usually it just makes me tired which wouldn't exactly be a bad thing when prednisone likes to keep me awake numerous nights a week. Anyone want to weigh in on this? I mean it can't be any worse than the drugs that are prescribed right? 

A friend on Instagram mentioned that she uses these creams and they have been a life saver

Shout out to AK (leaving your name out for privacy purposes) 

When I looked them up though it seems that the ones with the actual THC is only available in colorado, based on the web page :( 

Anyhow they may be worth a go.

I have to say though at the moment most my pain is in my feet and my hands. 

Hand cramping probably being the worst. My back pain has been pretty mild lately. The shooting pains tend to be going through my feet and into my toes again. Like a flash back to early last year before diagnosis. 

Is that what happens when your nerves are healing? Your body goes through the motions of what previously was painful? 

I really hope not I'm not sure I can handle stabbing hip and back pain again. Although if it's part of healing I will gladly suffer through. 

I need to read some research on how nerves heal. The neuro said that they regrow something like 2mm a day. Based on my sensory loss I'm told that my damage is past the actual mylien and into the nerve itself. Basically that means this road to recovery is quite long and while I will make it through it may take longer than I previously had expected. 

I feel like I can feel a bit more on my legs lately but I guess only time will tell. 

Dr. Cho appointment in April. 

Hopefully that day we can also stop at the blood draw and have my CBC and ALT tested again. I'm really hoping that my liver enzymes will be in normal range! I haven't had a sip of alcohol in over 2 months, but that liver just isn't cooperating! (Another reason why Marijuana is sounding good ha) 

Anyhow I started this entry with one intent and ended with a completely different one. 

Tomorrow is low dose steroid day.

I'm hoping I will feel awesome! 

Flora is coming by with a movie and we are ordering take out and having gossip. 

Laughter is really the best medicine and I should could use some human interaction before I turn into total cat lady status :) 

That's it for now!

<3