Monday, January 14, 2019

Back at my desk

I am back ....almost.

Thank you for all the well wishes but I feel bad that you all thought I was sick in the traditional sense of sick, a cold, the flu etc.
I had neither.
This was the ugly celiac disease rearing its head.

When my pain gets so bad I somehow lose awareness of what is going on or remember any of it.
I know I've shared before but to newbies.
Folks have all these villi in your gut/intestines that absorb nutrients from your food. However, celiac disease destroys all the villi making it look like a Berber carpet instead of a shag. All those shag villi waving absorbs the nutrients and sends them out into your body. When you don't have that villi waving in the wind it is all smashed down it can't absorb nutrients to your body that you need.

Because of this fun fact, I take a lot of capsules a day of things that I am most affected by and the biggest issue for me is always Magnesium.
If you saw all the supplements I must take your head would spin.
I go along nicely and everything is fine then just one day my body says, times up and my muscles begin to become hard as a rock, my body becomes like stone or a statue. This occurred from the back of my neck to down past my buttocks. Very very difficult to move and when you do the pain is off the charts. 

I have never had a baby so I don't know that pain.
I have had 4 back surgeries.
I have had a torn meniscus
I have had a torn labrum in my shoulder
I have had a torn rotator cuff.
Not a single one of those was as painful as this. Not a single one of those hurt more before or after surgery. 
This pain is out of this world.

Rick told me I was sitting on the edge of the bed at 3am and he was listening to see if I needed help. It was a day I thought I'd try again to be in my bed. It didn't work.  I shuffled to the master bath and he then heard the water in the tub turn on. He was convinced I was sleepwalking so he got up and came into the bathroom. Apparently, I threw the whole bag of Epsom salts into the jacuzzi tub and turned on the tub. Bag and all. When he told me that I laughed. I couldn't bend over to fish it out so he took out the bag and left behind the epsom salts. For those of you who may not be aware, Epsom salts is magnesium. So they are helpful.

Now to know me is to know I HATE baths. 
Our jacuzzi tub gets dusty from lack of use. Rick said I was out of my mind and he knew it was the pain. He has seen this once before when this happened a few years ago. He helped me into the tub. 
(good call since it comes up to my mid-thigh and climbing this was difficult when feeling great) With every move is a moan, groan, yelp. 
Or all of the above. 

He suggested we go to the ER. But they can't do anything. I reminded him of the last time. I begged for magnesium through IV and they wouldn't do it. My doctor is not open on Friday or the weekend to get an IV of magnesium to help me quickly. So I was on my own. 

I don't recall laying in the bath. I don't recall any of the next couple of days. 
I was in such pain. Can't lay down, can't sit upright, can't twist or move.
When this hits me I begin to up my dosage of magnesium until diarrhea. 
Sorry. But that is the only way to know I've had too much. Then you go down to the next level. Yes, this is my gauge my dr. gave me, until you have diarrhea.
I find that a funny way in our scientific world that is the best way to know.

I am currently taking 1500 mg daily. For the past year, I have only been taking 950mdaily and been fine. My blood work last time at the dr (3 months ago) was a teeny bit low but she asked about my muscles etc. I was fine so she said she was letting it go. Oh, we won't be doing that again!!

I am slowly getting to normal. I am sore and in pain, but it is liveable. I can move but carefully. Moving without our mind-numbing pain is a good thing. Being still without mind-numbing pain is a good thing too.
Right now it's more like the feeling of a lot of exercising right now with the exception of one area. So not bad. Breathing I still feel every deep breath but again not bad.

With me being out of commission that meant Rick could watch non stop Luther on Netflix. Boxing on Showtime and all testosterone type shows for days. I was out of it. 

I was unable to sleep but if I got propped up with pillows just so I could fall asleep sitting up. Oh yes, Peg was having a good time. No bed sleeping for me. Too painful to lay down or to be on my side. But let me tell you how great Rick was at making this pillowed area for me on the sofa with the heating pad on my back. He was a great nurse, but I think it's mostly so I quit crying or whimpering. 😊

We got 10 inches of snow out here west of DC yesterday.
Rick did all the shoveling and snow blowing. 
He did most of the neighborhood which made people ringing our bell most of the evening bringing him food as a thank you.
Silly people, he just does it to be kind, no need for food.
(In more ways than one I might add)

I don't know what I ate on any given day when like this. 
I don't remember the days. I remember the pain.
I saw chicken soup in the fridge this morning and said, "Hey did you make chicken soup?"  
Rick laughed and told me, "you asked for my chicken soup so I ran and got a rotisserie chicken and made one"
"Hmm, do not recall but so glad because your soup always makes me feel good."
"That's what you kept telling to me."

Now that the fog is almost gone I completely remember yesterday. 
I went outside because I so wanted to. I walked around the block with Rick and Izzy and then they went the rest without me. But it felt good to be out even if it is shitty weather.

If I wrote comments on your blogs while I was in my pain-induced fog and it makes no sense, I apologize. Rick said I was on my phone reading blog posts.  Wow, I had no idea and I must admit that frightens me.

10 comments:

Mike said...

You should have a permanent note from your doctor for a magnesium IV at the ER.

Olga said...

That is a lot to go through. My good friend was recently diagnosed with celiac disease. I thought "no ore bread" but It is WAY more complicated than that, as you know. I hope things soon.

It's.a.crazy.world said...

Oh, Peg, so sorry to hear. I do hope you feel better very soon. That sounds awful.

Misadventures of Widowhood said...

I have a great-nephew who has Celiac Disease but I never realized how bad it could get or what causes and "cures" it. Thanks for explaining.

Glad you are getting back to normal and I agree with the poster above about getting your doctor to order a standing order the IV.

Brian said...

Wow. That was quite the education on what celiac disease can really do. Had NO idea the effects could be that far ranging. Glad you are on the mend.

And you ought to follow up on what Mike said. Get a prescription from your doctor for magnesium by IV until you get the trots. Might help shorten the whole cycle for you.

Annsterw said...

Oh wow! I can not imagine dealing with all of that! So sorry...I am so glad that you are on the upside now though!
What a sweet hubby to help out all the neighbors too! Feel better - hugs!

Ami said...

What Mike said up there ^^.
Permanent note,and right away.

I'm so sorry you had to go through that I hope you don't have to again. Ever. ((hugs))

Barbara said...

That sounds awful. I had no idea it affected your muscles like that. It is so strange that with the marvels of modern medicine - and the cost - that there is not something they could make to help this. I have a whole new picture of your health issues when you talk about what the wrong food can do to you. Hope you feel back to normal soon - or should I wish for more!

Susan Kane said...

Makes a migraine seem like a splinter. Can't think of any more words than what has already been said.

Tattooing magnesium on your thigh?

Arkansas Patti said...

Good grief, I had no idea what a nightmare that disease could be. I also agree with Mike. Isn't there anything they can give you for the pain? So glad you are coming back out the other side. Sending hugs and prayers.