From scratch again


Good day all,

I know it has been months since I’ve actually posted in a blog. I do know most of you follow me on Facebook but this is no excuse for me not to be posting on here, I have been feeling awful for not doing what was the first thing that allowed me to speak with all of you, I am and always will be so grateful for all the love and understanding that has always been to me through this page.

The photo that I posted above goes with the title of my post today. I am once again starting from scratch.

Three weeks ago I found myself in the hospital one more time paralyzed from my collarbone. It was a process to get there though. Things started off slowly, I mean as slowly as things work for me. I have once again been intermittently paralyzed from the middle of May through my entry to the ER at the end of August.

It was the the evening before and the morning of admittance that things started to spiral as things always seem to for me. The Saturday (afternoon before) I was out in the yard washing off potatoes from the garden, I went to stand off the stool Kyle had placed for me and my body was having none of it. Kyle had come up from the garden and well I looked at him and off he went for my wheelchair. Saturday evening was difficult on us both, watching me slowly digress again. Well I guess we should have seen or possibly expected what was to be Sunday morning, I knew first thing on awakening, my first thought was that it was time to call Kyle and prepare for the hospital. I was going to call him but I simply allowed him to sleep until he awakened on his own. I had a hunch he wasn’t going to get much rest over the next however long and wow was I correct on this account. He came down to my room and asked how I was, I replied “I think I should be heading into the hospital soon.” He said “do you need an ambulance?” I said “no, I don’t think I’m quite there yet.” He walked away and started the coffee. I was lying in bed unable to raise my head as every time I tried I thought I was going to throw up. I called to Kyle as I need one of my really strong anti-nausea drugs. I took it and that didn’t even help. I was able to get my coffee down, or at least most of it without actually having to lift my head. (Haha! the talent that a person picks up), off to the hospital in my pj’s.

I was at the hospital probably no longer than a couple of hours when my paralysis had progressed up to my breastbone. I was starting to have severe MS Hugs fairly steady at this point, as a matter of fact the longer I was there the worse everything was getting. Now this trip to the hospital was after ten days of Cipro that didn’t work at the end of July into the beginning of August after 5000 milligrams of IV Solumedrol just to find the sub-clinical UTI in the first place that had been causing the intermittent paralysis for all the beginning months of this endeavor. I had been to the doctor on the Wednesday just prior to my admittance due to the fact that the first round of antibiotics not working. I was lying in the ER already 5 days into my second round of Cipro for the same bug they found in July that was surely there hidden since May that no one would medicate until July after the Solumedrol was used. It was at this point that my antibiotics were given by IV and more bags of steroids only in lower doses. The two bags of steroids I received in the first two days were only 165 milligrams (just baby doses compared to normal MS doses.) Within a few days I still was only going down hill not coming back even after they had cleaned out my UTI, which really was gone. I was there about 4 or 5 days when one morning I woke up and I had progressed up my collarbone area. My right arm and hand was completely gone; my fingers were starting to curl on there own I was needing to lay them flat on a pillow to force them to stay straight. It was at this point that my NEW general practitioner that I only got on the second week I was in the hospital made the decision to start me on a second round of the 1000 milligrams a day of Solumedrol again knowing that this would be the only way to saving me from completely loosing everything.

I sit here right here right now realizing that if he had not made that decision and that if I had not agreed to it I wouldn’t be typing this to you. There wouldn’t be anything being done until I would be set up with a new electric chair with all the contraptions required for movement without hands, then on top of that computers set up to help with assistance to speak to it to in turn speak to you. It is in these decsions that I make and that the doctors make that I am still here once again.

I have been avoiding speaking the truth for quite sometime as you have probably figured out today, but there have been real reasons for this of course. Well okay at least in my head anyway. My reasons have been not to scare people who are all so wishing to have the transplant done and not to scare the ones who have already had it. I also don’t really know how to say all the stuff that has been happening to me without sounding like that person that I don’t wish to be. I think so far today that I have done a fairly okay job of keeping simply to the facts instead of letting the emotion of all of it come into play.

The picture of course at the top of all this is the best part. I have started now with a better attitude as of late, (thank heavens for this) Physiothepy has been two days a week now for two weeks since I’ve been out of the hospital but I haven’t been safe enough to really do things on my own at home until the last week. I started with simple wall and chair exercises but as of three days ago I was back on my handle little dual machine. I once was able to do 30 minutes 4 times a week but that was then and this is now. Even back then I had first started with 5 minutes even after collapsing the first couple of times. This time starting from scratch for the unknown time (I’ve honestly forgotten at this point) how scary is that really? Well anyways, a few days ago I did 3 minutes sitting and 2 minutes standing and today I was able to up my sitting by two minutes allowing me to up my total to 7 minutes total. For this little (haha not so little gal) I think that rather impressive. I have been here before and sadly fairly certain I will be again, but until that day I am going to continue on and get stronger and stronger by the day both in my spirit and my body. It is a factual statement for me that I try very hard to not let my physical weakness run my emotional health and for the most part this is true. In all honesty as most of you know this is not always the way it is, I am a human being doing the best I am able.

This is me doing as I always do, thank you so much for continuing to stand behind me..

Love and hugs Fiona

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