Up and down again
Kelly
darn disease and sometimes I have a good handle on it.
I will start by saying the rituxan is already starting to kick in - thank
goodness. Take note Donna - hope is there this time. I went to the Doctor
yesterday and she was thrilled with my lab tests (she is a locum, just
graduated and was doing resident training before for my doctor so the past
year seems to have seen me a lot). My potassium just went down a very
little - within range this time again so she is pleased - obviously we have
the steroid stuff down now. No uti's - YES!!!!! Normal urine tests even
after all the rituxan and off the macrobid so that is great. The
interesting thing was how happy she was about my C-reactive protein. I am
normally low on that and on my sed rate so wasn't sure why she was so
excited. Apparently my CRP was 5.1 (I think the highest in a long time for
me and very suddenly high) and is now down to 3.8 since my rituxan. So that
would account for the sudden fatique before the rituxan and the instant sore
joints, swollen joints etc. That would also account for the spurt of energy
the last few days and the slowing of the fatique.
Of course did too much in Seattle, had a scooter that just didn't fit right,
was still in a flare and not over the rituxan, and my back went into spasm
after I got back. I felt really sorry for myself by the time I got back
from Seattle as my disability really showed up when travelling with a group
of able bodied people without my car and own scooter. I fought doors
without openers, ignorant people, stairs (old city with old buildings),
ignorant people (oh did I mention those already), some incredibly incredibly
sensitive people in stores who understood disabilities and the disability
act, some that were incredibly ignorant and ignored my requests (like would
you be able to open the door - the security person was right at the door and
said no that wasn't his job - duh I had a scooter! ) until I threatened to
report him to the ADA - like I even knew how I could do that.) Travel hits
new bumps each time - think I am prepared for line ups, preboards etc but
always something new comes up. Am learning to be more assertive but that
means I have to admit to having a disability to me. Hard to do - in my mind
I can do anything I put my mind to. guess what - I can't. the limiting
factor is very much this neuro leg and I just can't do anything about it
except use a scooter and stay in it - not hop up and down for the most part.
I rested each day and took painkiller after painkiller at night but.....
Anyhow I will learn. The quilts were fantastic though! And I do love
Seattle but I will do it next time with my van and my own scooter if with a
large group. Or maybe I need to travel with only 1 or 2 people.
Anyhow physio has done what he can to loosen my hips and has given me the
usual lecture about doing strength exercises during a flare - I just didn't
realize that the flare had come on so fast and wasn't concentrating on my
body enough. Range of motion only in a flared joint (which is all of them
right now). Range of motion, don't overdo, do not weed garden for 4
minutes - not even for 1 right now. Rest, ice, heat, gentle stretches in
small small amounts, rest...... I have read so many books this week - at
least we go to Parksville to the beach come Saturday and I can relax in the
rain with more books and my family. My brother, his wife and 6 year old
will be joining us for the week so hope for good weather.
Anyhow have been thinking of all of you and wanted to send some hope to
Donna and DeeTee. amazing this time how fast this is working so hopefully
if we can catch it before the downslide as Donna's and my rd is trying we
can keep the trend going for the rituxan. Fingers crossed - they figured 8
weeks this time. Oh I hope so!!!!
Kelly
DeeTee
see. My second infusion is on the 28th.
DeeTee
"Kelly" <kell...@shaw.ca> wrote in message
news:iqkrk.101545$nD.19447@pd7urf1no...
Diane
settles down soon.
kelly, that's so cool you can see the rituxan working. sorry about the
ignorant people on your travels, tho. travel can really be the pits
with a disability. :(
diane
Kelly
might be looking at up to 4 months sorry to say but the next times will
improve. I will wish you luck now for the 28th in case I am not back on the
computer that day.
Kelly
"DeeTee" <ke3iu_...@hotmail.com> wrote in message
news:g8kp0j$94q$1...@registered.motzarella.org...
Harvey R. Stone
"Diane" <dc...@aol.com> wrote in message
news:0203f9a2-cf4c-468c...@2g2000hsn.googlegroups.com...
Well said and my thoughts too.
Harv
Donna G.
{{{{{{{{{{{{{ Kelly }}}}}}}}}}}}}
Doing a happy dance for you that there are no UTI's, levels of potassium
are within normal range, and that the fatigue is starting to lift a bit
for you!!!
However, that back spasming things sounds simply miserable!!! Sure hope
it eases quickly and disappears for a good long time!!!
Hope your time at the beach with family will be fantastic and will also
be a time of relaxing, renewing, and refreshing for you and your poor
body!!!
Hugs,
.
.
.
.
Donna
.
.
.
.
1.) ANGELS EXIST, but some times, since they don't all have wings, we
call them FRIENDS......
2.) J.K.M.A.
Nann Bell
(in message <iqkrk.101545$nD.19447@pd7urf1no>):
> I will start by saying the rituxan is already starting to kick in - thank
> goodness.
Wonderful!
> No uti's - YES!!!!! Normal urine tests even
> after all the rituxan and off the macrobid so that is great.
and more wonderful! .
> of able bodied people without my car and own scooter. I fought doors
> without openers, ignorant people, stairs (old city with old buildings),
> ignorant people (oh did I mention those already), some incredibly incredibly
> sensitive people in stores who understood disabilities and the disability
> act, some that were incredibly ignorant and ignored my requests (like would
> you be able to open the door - the security person was right at the door and
> said no that wasn't his job - duh I had a scooter! ) until I threatened to
> report him to the ADA - like I even knew how I could do that.)
grrrrrrrrrrrrrrrrrr
> think I am prepared for line ups, preboards etc but
> always something new comes up. Am learning to be more assertive but that
> means I have to admit to having a disability to me. Hard to do - in my mind
> I can do anything I put my mind to. guess what - I can't.
((((((((((((((Kelly))))))))))))))))
at least by preboarding you avoid being involuntarily bumped from the flight!
(after one negative experience that way when both of us were ill, we learned
our lesson. Now, if they've been asking for volunteers to be bumped and we
really don't want to be for some reason, I make sure mybraces are on, start
limping if I'm not already and we preboard.
>
> Anyhow I will learn. The quilts were fantastic though!
lovely!
And I do love
> Seattle but I will do it next time with my van and my own scooter if with a
> large group. Or maybe I need to travel with only 1 or 2 people.
You see, it's not about not being able to do things, but rather about
learning what makes doing these thinggs the least stressful possible. try to
put a positive spin on making the changes - but you generally do that anyway!
> do not weed garden for 4
> minutes - not even for 1 right now.
hmmmmm, he must not be a gardener. My RD's PA one time told me to lay off th
gardening when my legs were really bothering me. Like a gardener at heart
who lives north of the 45th parallel CAN lay off gardening in our brief
summers!
Rest, ice, heat, gentle stretches in
> small small amounts, rest...... I have read so many books this week - at
> least we go to Parksville to the beach come Saturday and I can relax in the
> rain with more books and my family. My brother, his wife and 6 year old
> will be joining us for the week so hope for good weather.
hoping for good weather, good family times & the rest & relaxation your body
so desperately needs.
--
Nann
remove the Gator cheer to email me
Change everything. Love & forgive.
DeeTee
DeeTee
"Donna G." <DKGB...@webtv.net> wrote in message
news:25905-48A...@storefull-3112.bay.webtv.net...
d'huit
helping you! bummer about the back spasms though. not fun stuff.
weird how you ran into so many people in seattle that were unconscious or
just plain ignorant and rude. you wouldn't have experienced that many
ignorant people in seattle back in the "70s and '80s. it all feels like a
different world up here now. back in '75, when butch and i first moved
here, we couldn't get over how polite everyone was here, even the drivers.
(heck, even our neighbors, whom we barely were introduced to, would just pop
over unasked to help butch with a project.) i can't help thinking some of
that inconsideration you experienced comes from recent regional transplants
and perhaps, some tourists. we've had a huge influx, population explosion,
in the past 30 years.
boy, can i relate to the "in your face" aspect of being disabled/limited and
the not seeing or having a hard time seeing yourself that way. in my case,
it was an "in my face" jolt about my own physical fragility.
hope you had a restful and restorative time at the parksville beach last
weekend. i love that you frequently do that kind of thing.
kate
"Kelly" <kell...@shaw.ca> wrote in message
news:iqkrk.101545$nD.19447@pd7urf1no...