Saturday, May 28, 2011

ok So I really do not likeGreen jello

yeah yeah yeah I KNOW its been a while since I have posted. BUT, I have very good reason.
Im sure most of you know (well ok some of you I am not vain enough to think you follow my every move on facebook and twitter hhaha seriously I am don't) SO I thought I would give an explanation.
I have been in the hospital and really really down with a bad flare up from Multiple Sclerosis.
I had been doing sooo so good and thought I was like a normal person. (well when the weather is cool I do get away with doing so much more and got so spoiled)
Then it happened. The little signs. I tried to ignore them. I just didn't want to see it. I was enjoying my daughter and my husband and being able to live that life again. I didnt want to go back there. I have missed so much being able to get out of the house and scrap like I wanted to and just feel human. When I got to where the muscle spasms were making my body functions uncontrollable I couldn't deny something ws up.
Then I woke up to a sore throat. Ok maybe it was just allergies things were blooming. Ya I was still in denial. Then It got a little worse, I couldnt really swallow good. Ya allergies it will be ok just keep taking the muscle relaxer its all good. By the weekend. I was unable to swallow liquids without choking and it going down my esophagus and becoming asphyxiated. I was losing weight like crazy and my potassium had bottomed out.
When I finally got to the hospital it was so very much worse than we realized. I was listed as mal nutritioned and lacking of vitamin absorption and intake.
running fever and right side of my throat was completely non functioning.
ya. This is where it gets scary.

I really didnt want to think about it. A friend not much older than myself thats how it started. He couldnt swallow. He had 3 beautiful children and a wife. He is no longer in pain. But there was nothing else they could do.
I think maybe that is why I blocked so much out. I cant think about it.
It got too real. They put me on the HEAVY HEAVY steroids. 1000 mg two times a day. 10 treatments. Also I still am taking the interferon treatments and my blood glucose ran way up.
I would just be sitting there and I would go numb in both arms from my neck to my waist. couldnt lift my arms couldnt swallow. I could breathe ok felt like when you are at the dentist and you are all numb and tingly.
Was the scariest thing.
They had always told me MS was a tricky illness and can do such strange things. Especially when your lesions are on your brain stem.
I dont have new lesions I have plaque heavy build up on the lesions that are already there which is far worse if there were new lesions you could account for new symptoms. this just means Im going to keep having same symptoms in larger quantity and hit harder and could happen any time at any level of severity.

We believe it is heat triggered, over doing and anxiety. mostly heat.
I had been trying to do as much for Bella to give her "normal"
I want her to have so much. I dont want her to miss out on anything. Yet I ended up missing her end of school stuff.
She and John are my entire world and all I wish is to be able to do things with them and be the wife and mother I always wanted.
Hate that something ridiculous like Multiple Sclerosis tries to stand in way of that.
I fight with it all the time and tell it to MOVEEE. It just will not listen.
WE need more research and meds that will cure this illness so my little girl has her mom. Along with the millions of others out there that need their parent or family member also.
So for now Im still healing and resting. Very tired cant sit up for long. The side effects from all the medications are horrendous. I have shingles in my ear and on my face and chest (rebound from the big steroid iv's) Im gaining weight also mostly fluid from the huge steroid iv's
just have to keep the potassium up because of my heart.
also the magnesium. Ensure has become my friend.
I ate so much jello in the hospital and they always bring the green kind oh gosh I think they send all the green jello to the hospitals to get rid of it ughhh gross.
I have been loving smoothies though. Really good and building me back up.

I have kept my l.o.a.d. prompts and will be getting them done just as soon as I can sit up long enough to do them. I get up some but mostly im still in bed. Just weak and overwhelming tired. I had thrush really bad it got in my eyes (that was an experience) couldnt see the tv or closed caption hardly read anything. So im glad that has cleared up. who knew you could get that in your eyes? was coming out of everywhere.

so anyway that is my update probably more than you wanted to know but I have been getting emails and people worried they havent seen me. So this is just easier than trying to respond to so many emails. My ears hurt with the shingles so havnt been on phone so I apologize for not calling anyone or answering. It will be better soon and I will be back to me and bouncing around in no time.
Love to you all and keep scrappin because I cannot wait to see all yall have done. I have alot of catching up to do and commenting to do. XOXOXOXOX miss yall much

4 comments:

Lissa (aka The Untamed Scrapper) said...

OH my dear Nancy. I keep you in my prayers and have been worried about you. I think you are about the most brave person I've ever known and I wish so much I had the resources and ability to do half as much for you as you have for me. I love you girl and I will keep praying for you, for John, for sweet Bella and for you to join them once again at home for a long long time.

God bless you sweet Nancy. Gentle hugs to you my dear friend..... <3

Renee said...

Nancy, you are a sweetheart! I am sure you know how much you mean to all of us. Please take care....'hoping you will feel better soon. Oh, and please don't hesitate to let me know if there is anything I can do.

Gentle hugs,

Renee

Scrapfaire said...

Thinking of you and saying prayers. I don't know what else to say except that I miss you when you're not fbing on a regular basis. Hugs!
Charity

Jocelyn said...

Oh sweet friend..I am so sorry that you have to go through all of this!!! I hate this disease!!!!

I too am battling with my Myasthenia Gravis..I believe too that the heat has brought it on and yes those wonderful steroids...Yep ensure..a girls bestfriend!!

I will hold you close in my heart and I am sending you tons of prayers and love!!!!

Feel better soon...take it easy and let that body rest!!!!