As you can tell, we are still reeling in many ways from everything over the past several months. Jim is home, and he is doing quite well. Honestly, much better than I, Him and I think even his doctors thought he would by now. He still is suffering from some abdominal pain, but more when he eats, and all of that pushes against those ribs. He had about 19 broken, at least on in two places. So, as he drinks water during the day, eats and so on, it seems due to the "lack" of nerve feeling, and then the "SOMEWHAT" odd places he right now has no feeling, the pain is better, but he is still dealing with some, especially when he is very tired, or after outpatient Rehab a couple of times a week.
Anyway, it seems I have been able to kind of "open up" for the first time in a very long time today and "hear" my own "voice" again... as far as my writing goes. Honestly, I truly felt I had lost all of it this time. For many reasons... first of all, my mind was not here, just the shock of the wreck, the plight of my own fall, my teeth, or lack of them, a continuous flare, not knowing where Jim would be, whether he would even walk again was a huge question right after all of the damage, the surgery, and everything there... more spinal cord damage was there, than initially thought... so there were many things holding me back from being able to truly "write" what I was concerned about. I even was ashamed of myself about feeling not up to truly doing my volunteer and advocacy work, which I love. But, I realized that will and is coming back now... it was just everything going on that those things were temporary. I am already putting a foot forward, baby steps, in trying to get myself settled back in my duties of volunteering, advocacy, and ambassador things.
but, since there have been a few more updates over the past week or so, I thought after posting to Facebook, I would also post here... I HAVE t get myself back into my blogging. It is so very important to me... and I feel my blog will continue to be somewhat the same, but I feel I will be adding more things in the realms of spinal cord injuries, rehab, and I will be adding more information about things such as Baclofen, which they use for SCI's and MS also. I have also been dealing with more other realms of medical issues, that also will tie into the autoimmune illnesses too. So, if you see me taking a bit of a different track, know I am "adding in" not taking away at all.
So, I will "paste" a couple of my FB posts below from today. They have updated information that some of you maybe interested in.... much more to come (this has not taken all of my will power yet)... even though it such made a dent in it this time.....
Facebook posts below from today and yesterday.....
Hello
all..I've been trying to get here to update everyone on Jim's
homecoming and first f/u with his back surgeon, and then my situation.
But it seems too much to do, too little time to do it, and feel like
hell... all three make for some frustration. The back surgeon was VERY
pleased with Jim's recovery process! In fact, I think he was almost
overwhelmed at that fact, that since they have NOT gotten
Jim's wheelchair out to us yet, that he walked the entire way all day
on Thursday with his cane!!!! :):) The wheelchair is actually just for
LONGER walks, like through a huge store, or to the doctors where like
Baylor it is a nightmare sometimes to walk to where your doctor is, etc.
He is going over to Rehab twice weekly in Waxahachie, then doing his
other exercises etc, walking here at home. He has now began to have some
spasticity issues, which usually show up about 8 to 10 weeks after a
spinal cord injury. So, we had asked about Baclofen, and he said
absolutely. He thought he might already have been put on it, while in
Rehab. But the symptoms of it did not really begin until about a day or
so before he was to come home. So, we were not sure at the time if that
was what it was or not. But, it is and just like someone with MS... it
should help immensely. From there we had to go have my pain pump
refilled. Which now they can do in their office, thus not the nightmare
of outpatient at the hospital, much quicker and much LESS expensive. My
lung X-ray last week on Thursday came back and appears the pneumonia is
gone, even though I am still wheezing, and rattling. But. they thought
it was more of an asthma development, and put me on another inhaler, and
I am already on Singular, plus a huge 60mg dose for 5 days of
Prednisone once again. But the next day, of course never happens while
you are AT the doctor, I got up to about 4 massive ulcers on the bottom
of my mouth and something in my throat that hurts like hell. I have a
tooth (more than one) that HAVE to be pulled, but no way he could work
in my mouth as it was, thus I am trying to get some of it healed up for
Monday, so I can get the ball on the roll. I am thinking having these
rotten teeth, what few I have left, could be also causing me to have the
other issues, almost like a constant flare. Also, I still have not
gotten to have my 2nd round of Rituxan due to the pneumonia, thus one
ankle the right one swells up horribly, and the pain is back in my
fingers, thumbs, toes, ankles and feet with a vengeance .... but I also
run the risk of having further mouth infection, if I am on it, when
having 5 teeth at a time pulled, and going through all of that, and
trying to not have a flare, BUT moreover NOT getting dry sockets and
infections. So, I am in between a rock and a hard place. The pump is
filled through September, yet my pain over the past week has been
terrible. I think just ALL going on, and as I said I seem to be in a
constant flare... anyway, so between the two of us, lots going on. We
kind of have to grin about it, because it seems both of us are dealing
somewhat with the same issues now when it comes to our physical
bodies.... We saw the Xray of the surgery, right after it was done that
night. He has a set of 7 fusion bars, so he beats me by 4...LOL! funny
but not, talk about looking odd though... I know when I saw mine, it was
like WOW, that looks like something I would work on the house with,
nuts, bolts, screws and bars. So, for all of you that have been with us
through every step of the way, I again and Jim too, appreciates every
one of you.... we also both ask for your continued thoughts, well wishes
and prayers. We have a long way to go for both of us.... but as I told
him yesterday, from what I watched about 6 weeks ago when he was at the
hospital, versus what I see now at home.... I now see much of the
"normal" parts of Jim more and more each day! :):) He is still in pain,
but he is determined to be able to walk without the cane, which may or
may not happen. But even if the cane stays, honestly he is a walking
miracle. Between the both of us and all we've been through, my pain
doctor was almost in tears. He did not know how badly things had been
since he was me earlier in the year for my pump refill. And I had forgot
to mention I had fallen that same night of Jim's surgery also... We
are truly blessed, but I admit these last few weeks, sometimes I have to
truly "hunt" for those blessings... the pneumonia and all of my own
weakness, pain, my mouth, the ulcers, my throat, a huge swollen
ankle.... I have to make myself STOP every once in a while, and truly
THINK just what a blessing we do have.
AWESOME
NEWS!!! OUR LAWYER FILED SUIT AGAINST THE 18 WHEELER COMPANY THAT RAN
OVER JIM. It was official yesterday! And THEY LOCATED THE CAR! We
thought it may have already been crushed, BUT the company that bought it
from the auction, still HAS IT! So even better! OUR PICS were GREAT BUT
NOW they have their own Professional inspector that can see it up close
and personal!!!!!! :):) This is truly incredible news....
I
so appreciate all of the "Thumbs up" and support.... as things began,
you really do not think in the "monetary" terms of something such as
this. But, now as we see the bills coming in, we think about having to
buy the car, time lost for his work, time
and money on Rehab, traveling, doctors, medications, pain and
suffering, the issues of me "losing" my care taker in many ways,
modifications to the house, you name it... now this part begins to set
in.... and even though I am NOT ONE for believing in "suing" as some
do... under these circumstances, I truly believe if all is as we have
seen and heard, this company should be responsible for ALL of it. They
have refused to even speak to our insurance company or our lawyer. Even
turned away certified letters, or even allowing the lawyers to speak
.... they have told "lies" as far as we know about the happenings of
that event... as far as even having the driver of the 18 wheeler say he
was NOT in a wreck, and he was not driving that truck that day. It was
also picked up and towed away by guess who? Their own company, very
quickly, even before the investigation got underway after the
accident... thus they are refusing to cooperate in any fashion at all.
That tells me... they are hiding something, or they would be out telling
the story as "they" saw it.... as far as the two (without a driver's
license due to NO INSURANCE anyway) in that Tahoe they are already out
of the scene. They also would not cooperate at all, and basically
"disappeared" along with the so called "witness" that just happened to
walk out on his porch about the time our car went sailing under the
Tahoe, (due to the 18 wheeler shoving the car under it)... anyway, that
person suddenly disappeared also. My insurance refused to pay them a
dime... and closed that part of this weeks ago. So, the portion now is
the 18 wheeler tractor trailer business who owns the vehicle... As I
said I do NOT believe in suing ... and honestly, probably may honestly
think about having a "side suit" in for my own losses due to losing Jim
as my caretaker. It has caused my own health, mental and emotional
status harm... and our lawyer is the one who even mentioned it. He said
that it may take longer to try and get that all in order and settled,
but we should think about it due to my own pain and suffering, health
issues, and the fact that now we may both be facing totally
disability... and "no" outside caretaker. My Mom sure can't... bless her
heart, she is doing more than she should right now at home I think
because she hates to ask me... yet she should allow me to do some of
what she is trying to do before she winds up accidentally hurting
herself. Thus, it is up to the both of us, possibly later on some in
home health care... and like I told Jim, I don't know where my own
health issues may take me... I may face being on a cane, etc... in the
future... the progression of the Lupus, Sjogren's, RA..... etc. has been
extremely bad in the past 6 months.... so we both maybe having to use
assistance to walk etc... anyway, just another "piece of the pie" of
life... when things like this happen. You don't want to face these
parts, but there comes a time you have to.... it sucks... but it is one
of those "necessary evils"...
Question
for those of you on "daily prednisone"? What dose do you take if you
are on a daily dose of it? I have been on a maintenance dose of 2.5
daily, which honestly I cut down, it is supposed to be 5 mg. daily....
but the doctor told me as long as I was feeling okay, the lower the
better... BUT when the doctor put me on the 60 mg tablets (2 20's daily)
for 5 days... the swelling in my ankle is almost
gone, and I've noticed some of the fatigue better, and anywhere I have
any type of inflammation going on, even with the "asthma" issue, that is
so much better. BUT we know that another "necessary" evil, is this
"wonder drug", prednisone, or the "corticosteroids" .... they do
magic... but they also can freaking wreck your body at larger doses for
an extended time if taken. So, now I face another dilemma... do I ask to
have an "increase" of like 10 mg daily.. or so ... I fear I will blow
up like a balloon and have MORE issues caused from the prednisone...
gosh this crap sucks.
