Reaching the End of My Rope...

October 8, 2008

Hi .... i wish i could help you.... but at this point, all i can say is

hang in there. sooner or later, sooner i hope, you're going to find medical

people who will give you the treatment you deserve.

Hard to believe there are uncaring people such as you describe in the medical

profession but they exist, i've seen it as well.

Just keep in mind that things will get better..... staying positive in difficult

times is not easy but try to do it. its one thing you can have some control

over. try to take your mind off the pain for awhile, hot bath, music, chocolate,

anything that works for you. i have difficult times occasionally, and i know

what works for me to get over it.

best wishes to you.....

From: Seska Lien <seskalien@...>

Subject: Reaching the End of My Rope...

Date: Wednesday, October 8, 2008, 8:18 PM

I've been doing progressively worse since about April or so, but the

last three weeks have seen things go downhill rapidly. Suddenly I'm

having all these neurological symptoms, such as the transient

paralysis I posted about a couple of weeks back. I feel like I'm

stumbling around drunk all day, missing a lot of time at work,

haven't been able to eat hardly anything and so I've lost weight (and

I was tiny to begin with, so I don't have any extra weight to lose),

my body is being wracked with constant pain so severe that it is

making me incredibly nauseous. I just want to break down and cry.

October 9, 2008

-

Hi , I have gone past the end of my rope a number of times. I

have had so many pain killers, that my body has built up a tollerance

to a lot of them. But I found this Rheumatologist that is a sports Dr

as well, and he does not give pain pill. He works with brain

chemicals.That new drug that they advertize for Fibromyalgia, Lyrica

has done so much to help my neropathy, gout, psoratic arthitis and a

few other soft tissue problems. I also have interstitual cystitis,

and it is very painful at times, but the Lyrica helps that really

good. I have been in so much pain they were giving me three different

anti depressants, because I was getting no sleep and at times felt

suicidal.Then there they are giving me strong pain meds, that were

not working. I am now able to take the Lyrica, one anti

depressant,and one diazapam, well plus the anti biotics for my kidney

and cystitis. So tell you Dr to try some Lyrica on you. It takes a

while to adjust in your body, but it is worth it when it begains

working. And if you can find a Rheummy that doesn't use drugs, such

as a sports Dr, they know more what they are doing with these crazy

diseases. Good Luck. D. in Oregon

-- In , " Seska Lien " <seskalien@...> wrote:

>

> I've been doing progressively worse since about April or so, but

the

> last three weeks have seen things go downhill rapidly. Suddenly I'm

> having all these neurological symptoms, such as the transient

> paralysis I posted about a couple of weeks back. I feel like I'm

> stumbling around drunk all day, missing a lot of time at work,

> haven't been able to eat hardly anything and so I've lost weight

(and

> I was tiny to begin with, so I don't have any extra weight to

lose),

> my body is being wracked with constant pain so severe that it is

> making me incredibly nauseous. I just want to break down and cry.

> Over the weekend I went to the ER because it was so bad and they

> basically accused me of being a drug seeker wanting narcotics (the

> EMTs harrassed me when I told them I was allergic to NSAIDs,

> essentially implying that I was lying to them so that I would be

> given stronger stuff, which I found highly offensive), but then

they

> still pumped me full of dolotid (sp?), vallium, zofran, and then

> benadryl after I had an adverse reaction to the dolotid (which is

> strange because it's always been the *only* heavy-duty painkiller

> I've been able to tolerate in the past). Then they threw me in a

taxi

> and sent me home with no answers. Today I went to a new

> rheumatologist since I just moved to a new state, and he was just

as

> helpful, saying that he had no idea what was wrong. I feel like I'm

> just being eaten away from the inside, and it's never been this bad

> before. No one seems to be listening to me, and I don't have the

> money to traipse around and keep looking for that elusive good

doctor

> that I haven't been able to find in 12 years and 3 states. I'm only

> 23 and have been sick for so long that I can't remember what it was

> like to NOT be sick...it's taking over my whole life. I just want

to

> be able to function like a normal human being, is that too much to

> ask for?

>

> Sorry for the long rant. I had to vent somewhere where somebody

would

> understand. My friends are nice to me about it, but I always try to

> hide how badly I'm feeling from everyone because I don't want them

to

> think of me only as being sick.

>

> ~

>

October 9, 2008

, go for the Lyrica. it has done wonders for me. Marty

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October 9, 2008

> From: Seska Lien <seskalien@...>

> Subject: Reaching the End of My Rope...

>

> Date: Wednesday, October 8, 2008, 8:18 PM

>

> I've been doing progressively worse since about April or so, but

the

>

> last three weeks have seen things go downhill rapidly. Suddenly I'm

>

> having all these neurological symptoms, such as the transient

>

> paralysis I posted about a couple of weeks back. I feel like I'm

>

> stumbling around drunk all day, missing a lot of time at work,

>

> haven't been able to eat hardly anything and so I've lost weight (and

>

> I was tiny to begin with, so I don't have any extra weight to lose),

>

> my body is being wracked with constant pain so severe that it is

>

> making me incredibly nauseous. I just want to break down and cry.

>

October 9, 2008

> I just want to break down and cry.

,

I don't believe I suffer nearly as severely as some of the folks in

this group, so you might take my experience with a grain of salt. But

I have to tell you: When my rheumatologist told me after several

months of no changes in my conditition that we were going to have to

move to Methotrexate, I decided to finally give in and try

acupuncture instead. Foruntately for me, although I live in a rural

area, a very qualified and caring acupuncturist practices in my town.

That decision changed my life. I go twice a month, since that's what

I can afford ($65 a session). Apparently my insurance used to pay a

percentage of the cost for such services, but I signed on a little

too late. Have my symptoms completely disappeared? No. But that

therapy, in combination with all I try to do to live healthy and

regular visits to traditional physicans, has made all the difference.

It has taken several months to rebuild and provide adequate support

for my system, but it has been worth it: I no longer feel as though

I'm at the end of my rope.

I encourage you -- and anyone else open to the idea -- to do some

research on acupuncture and consider giving acupuncture a try, if

it's available in your community. What do you have to lose?

October 9, 2008

Hang in there my friend. I know I have come to that part of the rope so many

times I have lost count.

Then Monday I had a Bronchoscopy in Calgary, and today I am getting transient

numbness in my arms and hands, then fuzzy feeling in them and then the out and

out severe pain. Even though I told the Respiratory Tech and the doctor doing

the deed about my Ankylosing Spondylitis with fusing in the Cervical/Dorsal

Spine area and up along with the fusing of my Lumbar/Sacral spine with a fully

fused set of Sacro/Iliac Spine. I did this to remind them of what is on my

chart up there. C/Spine and upper D/spine fused, handle with care. O no

!!!!!!!!!! she wrenched on my neck in order to get my back to straighten out

for the position they wanted for the Bronchoscopy. That and the fact that she

had the bedside manner of a Hyenna along with muscles the size of Hulk Hogan's.

At least that is what it felt like when she placed her hands on either side of

my head and pulled it downward into the position it can't go, so I yelled,

" Watch Out, you could cripple me doing that. " Then the doc came in and put me

under with their sedative.

Hopefully I will never have to go through with that specific 'oscopy ever again.

I should know next Monday what ever is clogging up my lungs. Another

possibility also popped right off the page for me tonight. That is a type of

fibrosis that comes with Rheumatoid Arthritis. Just what I needed. We will see

where we go next.

So hang in there, for I have found that whenever the going gets tough for me, I

read of or view the case history of someone in much more trouble than I.

Fr. Dave