I just wanted to drop a note and say hi. I have been unable to be
online since Thursday. I have been disappointed that since then I have
been very weak, light headed, dizzy, and lethargic. What really
disturbs me is that the doc here has done precisely nothing about it. I
have been unable to do much in pt...and my therapist has to come to my
room and help me get to the gym. I seem to have the worst luck with
doctors...what do I do to make them so complacent?
I think the cause of all this is simply a lack of adequate nutrition
and/or hydration. A few days ago they took me down from 2000cc of tube
feed over 24 hours, to 1500 over 16. The hope was that I could get off
the feed during the day. The problem is that I have very bad diarrhea,
nausea, vomitting and am working very hard physically for at least three
hours a day. So, I went from 2000cc, doing very little physically, to
1500cc with intense physical therapy. It seem to me that the most
common sense solution right now would be to put me on the tube for a
couple of hours in the middle of the day, but my doc won't even make a
decision about that! I have not seen her since Thursday morning, and no
matter how much I ask, she won't see me or order any changes. I am
frustrated, at a loss, and losing a lot of strength. Tomorrow I go home
for 2 hours on a pass (yessss!!!!! the first time in 4 months). I plan
to take formula with me and hook myself up while I am home...otherwise I
am afraid I will simply pass out.
Okay...I know you are all a bunch of strong people. Any ideas? It is
so hard for me to assert myself....and I feel so powerless. If the
doctor won't address the problem, what can I do? I am so sorry to
burden you all with this.
On the positive side, I am going home tomorrow for a few hours. I am
incredibly thrilled, and nervous. How will my pets (does that sound
ridiculous) react? I have been gone since Oct. 15, with the exception
of three days at the end of November. I am getting very impatient
waiting for tomorrow!
I also "graduated" yesterday from driving training. We went on a major
interstate at rush hour and I did very well, so I now have my
certificate. Now we just have to sell our truck and find a car that
will work with the wheelchair(ha! that's all :-)
The greatest news is that I am very happy with my physical therapist.
She is very aggressive, and also incredibly sweet. She is not afraid to
try things. She is determined to get me upright, if she has to hold me
up herself (which she still has to). My legs will still not support any
weight at all, and I cannot lock my knees (the knees buckling was my
first symptom is TM, btw...going back 10 years).
Well, I will stop yammering. Thanks for listening. I am sorry I have
been slow in responding to all of your personal emails. Please know
that they all mean so much to me, as do you. As soon as my strength
returns, I will reply with gusto lol...it will be the first thing I do.
As always, I would love any advice. How do you get the courage to
confront these people?
love, Mykella