Back with the living...

I am happy to report that the worst is over with this last dip.  What a nightmare that was.  Earlier, I read the post I wrote last night, and I really did have a lot of misspelled words and disjointed sentences.  Believe it or not, I actually proof read it first!  You should have seen it before I made the corrections that I caught ~

I am back to my old/new normal, which is still a challenge.  The doctors have told me that I can only exercise in bed.  Lately, I have been doing some leg exercises (some days I can, and others I cannot) and I am wondering if that is what propelled me in to this recent mess.  

Since this overall harder time began, several months ago, I know to lie low.  I'm going to have to continue on this path. For whatever reason, I go down so much faster these days, from the littlest bit of activity. At this point, I am readjusting my expectations.  I pretty much "get the picture" and have been living accordingly.  

As crazy as this may sound, I wish I were still in that nightmarish phase...only because I want my symptoms in full bloom while the MRI is being done on Tuesday.  I guess it really doesn't matter, but I think it wouldn't hurt.

With the double brain MRI on Tuesday and my GI appointment on Friday, this week will not be the greatest.  Whenever I feel the time is right, I'll pick up the phone and start touching base with everyone...it is always like a party!

Not foolish enough to push my luck...back to bed.

Shocked that I am sitting here writing...

..the past few days have been about the worst that I have had to deal with, since 2005.   I always feel like I should explain, when I do a lot of complaining...not too many jokes.


Actually, there are two reasons that I am sharing this with you. My most important readers are the chronically ill.  I want them to hear about the true depths caused by the extreme symptoms....to know that I GET IT!  My number one allegiance is to the sick and ailing readers.  Over all, I do try to pepper the posts with the unexpected rays of sunshine that are always right around the corner. I can honestly say that I usually do not have to look too far to find them.  Yes, I am sharing the worst, but, no doubt, there will be a woo hoo post coming around the corner....the power of suggestion...this just can't last at this level too much longer.


The second reason I am writing about this, is for the several, very important and overdue phone calls I need to make.  I apologize with all my heart for not answering e-mails or phone calls.  Hoping that I will be able to get some calls returned in the next few weeks.  With my endless delays in returning calls/emails, I am afraid that some might think that it is not possible to be too sick to talk on the phone.  Trust me...it is very possible.  Not to mention, with the lapses between calls, the catch up calls are very long and I really do get my adrenaline pumping, hearing everyone's stories and updates.  As anyone would ask, the first question is "So, how are you??"  "What's the latest with the doctors?'.  In my unique situation, it is incredibly hard to describe what is going on. There several very serious issues, some affecting the others- issues and some go hand in hand with others, yet.  I almost need a flip chart to explain.


Overall, I have been very sick.  It has been difficult, to say the least.  My stamina level is pretty much in the negative column every day. I have many symptoms that are hard and debilitating. keeping me always close to bed.  Most of my days are spent in bed...doctors orders.  Unfortunately, I can still get blindsided, even when staying close to bed.


Starting on Thursday, I had a radical decline.  To say it was intense, is an understatement.  My immunologist said that when I am at my worse, it is equilevant to an HIV patient, within two weeks of death.  That is exactly what it feels like...but more like two days to death.  Indescribable....expecially, with the feeling that my muscles are decomposing.  This sensation is impossible to adequately describe.  A nightmare??...I wish.  It is so horrible.  There is no medication for these symptoms  Times like this, I wish I could knock myself out and just sleep through it.                                 


As I posted on Thursday night, I mentioned that my hands were continually freezing up in a claw position.  Because of that, and my brain fog making it almost impossible to type, I cut the post short.  


What happened next, lasted until late this afternoon....almost two days.  The symptoms that I am about to mention are not new to me.  


My legs, feet, forearms and hands were horribly numb and without sensation. I dropped everything I picked up and my balance was horrible. This concerned me, since in the past, I have had these symptoms, but there weren't concurrent and were momentary...then POOF, they were gone.  


Three straight days of this was unbearable.  I had constant lighting bolts of nerve pain, shooting all over my body, like fireworks. In addition, my muscles were jumping.  It is like having a baby in side me, kicking....a strange baby that kicks in my legs and arms..not just my abdomen.  


The lower, back of my skull was filled with an enormous pressure.  It is not like a headache, but incredibly uncomfortable. My head, felt like I was completely drugged (separate issue from the head pressure) Unfortunately, there are NO medications for any of these symptoms. When the lower skull pressure accelerates, then it continues to the back of my neck and the very upper part of the middle of my bake. This and the drugged feeling are two different issues.  When the neck and upper pain begin, it is like my head is leaning back.  I have to consciously hold my head upright. 


My muscles kept freezing, like I had described in my last post.  This is not like a muscle cramp, which is another huge issue for me, but rather it is like the muscle has frozen.  This even happened on my upper/right back.  My hands were constantly freezing up, as well as other muscles.


I was also having endless involuntary body movements and jerking in my arms and legs.  Like I had said earlier, these are not new symptoms, but never, ever had this last for days.  There was shooting, electrical type nerve pain, all over my body. Overall, it was a nightmare experience...very scary.


With my autonomic nervous system issue, it causes my nerves to fail to deliver the message to digest the food to my stomach and digestive system.  That is a miserable condition - Gastroparesis.  Because my stomach isn't getting the message to digest my food, there are times when the food sits in my stomach until it rots and liquefies. This causes horrible nausea. Unfortunately, it also affects my lower digestive system too...TMI..eeks, I know.


I was lying in bed, and my body was moving, involuntarily, along with SO many other things going on.  If it had gone up one more level, I would have gone to the ER.  It was like I was possessed....and wishing I could be repossessed!!!! It was just horrible.  While lying flat on my back, my central nervous system was misfiring signals to all the wrong place in my body, like a machine gun. I really believe that this is almost impossible for a well person to understand. It is like nothing a well person ever experiences, even with the worst flues, virus, surgery recovery, etc.  I've been to all those places, and this is another world. 


As it turns out, I have a very imporant Brain MRI on Tuesday.  First is the usual, looking for MS lesions.  The second is checking the pressure in my head and how much spinal cord fluid is present.  After what I have been through the past several days, I cannot imagine that an answer isn't going to pop on the films. Let's get the show on the road...please!


Today was nightmarish also...it is so scary.  Even though I believe that I am NOT dying, I swear that dying must feel just like this.   I am still very sick and not expecting much for tomorrow.  I have to stay in bed...  Writing this post is difficult and will be signing off soon and getting on my back.


I AM listening to my body...because of that, I am rarely out of bed.


Being chronically ill, for the past seven years is a struggle, as much as I would love to say it isn't.  It is honestly indescribable.


This post is more for my friends/family that are waiting for calls and not getting them.  Hoping this will shed some light on my complete and total disappearance.


Friday, I have an appoint with my GI doctor.  I have a condition called Barrett's Esophagus, which is precancerous tissue.  It can progress, but chances are that it will not.  To be sure, I have routine biopsies.  We'll be scheduling that for the next week or two.


I can't sit here another second.  Back to bed, and hopefully to sleep.
Again, I apologize for living under the radar these days.


Oh..one more thing!!  After I wrote the last post about "Patches..I'm Dependin' on You Son".. I spoke to Chris and Ryan.  They had absolutely no idea who Patches was!  I didn't check, but I think it may have come out around 1971?!?..not sure. It was such a cornball song.. I assume everyone would know about this stuff...I guess I'm showing my age :(


Well, I didn't point out any silver linings...just too sick to sit here another second...they are there!!!


GOOD NIGHT!!!
disclaimer...I did my best, under my circumstances...I know there are countless grammar and spelling erros....I don't care tonight...