Hello Everyone,
I just thought I would share some (tentatively happy), news for once. If
all
> goes well at my appointment with my general practitioner tomorrow, at the
> Ontario Student Loan Offce, and at the Housing Office tomorrow (with a
> prayer that I will get there being on 120 mg of morphine/day, when all I
> want to do is sleep), things look promising for me being able to stay in
> Ottawa for the summer and deal with the same physiatrist who is helping me
> with my pain. He has started me on fentanyl patches to see if they help
with
> side effects/cut down on my oral morphine. If they help, he will increase
> the size of patch, decrease amount of oral medication---which is good,
> because I long to be on some sort of medicine for my spasms/ what the
> Movement Disorders team at home called dystomia-- at least in a letter to
a
> third part and never to my face. If it is what is causing m,y pain, then I
> deserve treatment for it, and in a way I feel lucky to have failed their
> Intrathecal Baclofen testing bwecause the therapist/nurse admitted that by
> doing it bylumbar puncture, they can NEVER test for dystonia. However, the
> symptoms match mine and I have written to the Vancouver Movement Disorders
> team. They are supposedly the best in the world. Thank God my sister now
> lives in Victoria.! Michael J. Fox is getting treatment in Vancouver for
his
> Parkinson's. I am going to ask tomorrow to be sent to the Montreal
> Neurological Institute for dystonia diagnosis/treatment. I need options
for
> pain and dystonia management--- and I don't think the London team should
> have dumped me when giving me a totally new diagnosis. I asked for (and
got)
> a referral to Toronto, but haver learned over Easter that neither my aunt
> nor grandparents are healthy, so could not host me if it was decided
surgery
> was warranted at all, or even if I needed to return for treatment.
>
> SOME OF THE GREAT NEWS IS THAT DR. GILLEN DOES DO TRIGGER POINT
INJECTIONS!
> But, he found 12-18 potential spots for injection, including
> hamstrings/adductors. I don't mind needles but was not expecting this
many!
> I don'thave fibromyAlgia or anything. however, because everything was
pretty
> much in the same area. TRIGGER POINT INJECTIONS HURT! But my prayer is
that
> he will be gentle. He has said he will do them every week and a half if
> necessary, to start with.
>
> I had to giggle: Most of you know that while in Toronto over Easter, I
went
> to an Orthotist specializing in CP, along w/ a prescription from Dr.
Gillen
> for new braces because I told him how much my present omes have always
hurt.
> The Orthotist recommended rear entry anti-crouch braces with a hinge that
> allows minimal plantarflextion, with a little soft "bootie" inside made of
> softer plastic for more medial/lateral stability. I found the bootie ever
so
> comfortable, and it means my ankles will NEVER touch the hinges.
> I had to laugh because today Dr. Gillen finally had time to do full
> evaluation, and watched me walk barefoot and with my presemt AFOs... When
I
> was finished, he said, "And your present braces help you how other than
> hurting you"? Something I have been tryingto impress upon more than one
> physician for a long time. I showed him a picture something like the new
> design, and he was at least hopeful they would help. I AM EXCITEDC ABOUT
> BETTER FITTING BRACES AND THE BUTTERFLY PATTERN WITH MAUVE/WHITE
BACKGROUND
> I HAVE CHOSEN. If the strike for the Assistive Devices Program GOES ON
MUCJH
> LONGER, I will put them through my Mom's insurance. I am alsdo excited
> because I AM TO BE THE FIRST ADULT IN NORTH AMERICA to try the SWASH
> ORTHOSIS- Standing, Walking, Sitting Hip Orthosis. They are doing trials
in
> Spain, but I sent the company a video and they are shipping parts from
Spain
> to the US. Then a representative from the US will come to Ontario and fit
> me. The brace will be free, and they will modify it as they improve their
> prototype.Ironically, I have been asking about it for a few years as well,
> and it is something the orthotist in Toronto recommended without my asking
> about it.
>
> Now I ask for your prayers and strength as I attend my next appointments.
I
> have to get deferrals on some papers which are impossible to write in
> pain/on morphine. Am planning at the moment to use the month of May to
> finish papers, take June off and focus on pain/spassticity/dystonia
> management, and then take a half credit course on videotape towards my
> degree from JULY-AUGUST. THIS WAY, IF I HAVE AN APPT., I WILL NOT MISS
> CLASS.
>
> Say a few prayers for me that the monetary/housing issues work out. At
least
> I won't need to go back and forth between physicians. MAYBE THE TRIGGER
> POINT INJECTIONS WON'T HURT AS MUCH ON MORPHINE/FENTANYL!
> I had such a good appointment that I HAD TO SHARE-- And Dr. Gillen has at
> least conceded that a pump for pain meds at least may need to be an option
> sooner than later. He does not usually put patients on patches this
quickly,
> but I react so harshly to anything given by mouth.
>
> Just wanted to share a bit of good news after my last few very bumpy
weeks.
> Please pray that God will give me the strength to stay here alone in the
> summer, and the money and permission from the Housing office I will need
to
> do it. I am so GRATEFUL THAT I FEEL LIKE DR. GILLEN CAN RELATE TO ME....
BY
> THE WAY, MY APPT. FOR INJECTIONS IS ON A SATURDAY-- HOW WONDERFUL OF HIM
IS
> THAT?? And he does not care how many times I CALL HIM, AND ALWAYS ANSWERS,
> UNLIKE MY ITB TEAM IN LONDON.
> At least there are still some people in the world who let patients listen
to
> their own bodies.
>
> Thats it for now. I thought I would share some good news. I just hope and
> pray the rest of this plan unfolds as well as this appt. did today.
> Please say some prayers.
> Jenn
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