Re: meds

[Guest guest]

Hi All,

I have been reading posts about getting off meds, etc.

Don't bother reading all of this if you're happy with your current RX situation.

I don't know if anyone cares, but there was a time when I was an RSD patient

that I was completely drug free. I decided after many months of being " over

medicated " , barely able to complete a sentence (this, from a former English

Major) that enough was enough. I still had the RSD pain, etc. WITH the meds, so

I figured I would rather be able to deal with the RSD with a " clear mind " .

I did not have any withdrawal symptoms at all. Again, proof that one with

chronic pain who is using the drug for something becomes DEPENDENT, not

ADDICTED.

I wrote long letters to my loved ones explaining why I had been so distant for

months... I couldn't focus on anything. I was not a part of their lives

anymore, at least that is how I felt because I couldn't remember what any of the

children were up to, etc.

I did well for two years, then an auto accident changed all that. Back on meds

(mind you, I'm allergic to Oxy and Morphine, must take mega doses of

antihistimines just to take one. Talk about a cruel fate... chronic pain

disease and allergic to pain meds!) and back to active pain management, blocks,

radio frequency treatments, etc. etc. etc.

I have ruptured discs in my back, and had an IDET procedure and more blocks than

I remember. I had cervical disc fusion, required because of herniated/ruptured

discs in my cervical spine that permanently damaged nerves as well.

And, now, almost three years past the auto accident, I am almost med free

again. Once again, I've found that most meds don't do much for me anyway. I

cannot take pain meds and function with the amounts of antihistimines I have to

take. I burn, swell, etc. even taking meds.

I have wonderful Drs. who wil prescribe me anything I may need, knowing I truly

need them if I'm asking. I have been blessed, and don't have to deal with what

some of you do, Doctors thinking you are drug seekers instead of people in pain

who need drugs to survive. I feel so badly for those of you, as it is horrible

to have to be accused of that. I wish I could share my pain management Dr. with

all of you. He is an RSD patient as well.

It works for me. I don't, for one second, believe it will work for everyone. I

responded for those who wish to try and take as few meds as possible. I'll be

happy to speak with any one who wishes to try that route, although I don't know

if I could be of any real help.

I am (I've been told) an EXTREME type A personality with a mix of Stubborn

Irish. LOL. I have a very high threshold for pain, according to my Doctors. I

have what I call a " bearable " level of pain. Once exceeded, I can sob for

hours in pain from a paper cut.

I decided long ago that I am going to have this disease, it is NOT going to

have me. If I feel in control of it all, it is simply easier for me.

That's my novella for today. Please, don't check sentence structure or the use

of proper English! I was an English Major, I KNOW what the mistakes are!

Once again, I've gone off on a tangent, and am not exactly sure why.

Hugs,

Jo

[Guest guest]

Gwynne, I go over to the house each

morning, check out the progress ,and let the contractors in.

I walk through with whomever is there and then I come home. It's only

5 minutes from here.

It looksd as if Feb 7th will be our move -in day.

It's 30 days and counting until 's due date. The baby is

already been determined to be at least 6.5 lbs from the last

ultra-sound!.She was 8 lbs 5 oz and her husband was 9 lbs at birth so

we art not expecting a small baby!!! I just Can't Wait!!!!!

Z fibriotic NSIP/05

Z

fibriotic NSIP/o5/PA

And “mild”

PH/10/07 and Reynaud’s too!!

Potter,

reader,carousel lover and MomMom to

Darah

“I’m gonna

be iron like a lion in Zion” Bob Marley

Gwynne Keyland wrote:

Kim and Tom,

How long has Tom been on Tracleer, and how

long has he been waiting for a lung? I hope you

get the call soon!

I don't have PH, but Tracleer is one med

my doctor is considering having me start (if I

agree to it). Another is a cancer drug called

Gleevec. ugh.

Has anyone out there taken Gleevec? Were the

side effects horrible?

Peggy,

Thanks for the kind words. Some days are a bigger

struggle than others, and the sob is a constant and

nagging reminder of the disease. But I don't have

chest or leg pain. I do have a transport wheelchair

which, so far, I've used only when going to the

hospital to the transplant clinic. It's lightweight

and has to pushed by someone else.

My son is coming tomorrow through Sunday, so don't

worry about me if I disappear temporarily. :-)

,

I do hope you find a way to get to San . It

would sure make everyone happy to see you, and I

know it would do your heart good to meet them too.

I'd love to give you a big hug myself. Your husband

sounds terrific.

,

I hope your cold is getting better in a hurry - those

nasty things can really drag you down, especially

when you're already sick.

Mama Sher,

I hope Lola's meds start working and will clear up

her vasculitis soon. Misha seems to feel fine, but

she's still on 2 meds and will need to be rechecked

in a few weeks. She's being a good sport about the

fact that we had to stop giving her Greenies, her

favorite ( & only) treat. They make her vomit now,

and we don't need that!

Tina,

Please keep us posted on how things go with

the Tracleer. I'll bet you did see some nightmare

stories working for the attorney. We have to be

SOOO vigilant and assertive in managing our own

care. I've seen several doctors in my life who

probably deserved to lose their licenses. And it's

absolutely horrible how the elderly are treated

by the medical community overall... makes me sick.

Babs,

Fortunately in our part of Texas we really never

see scorpions. When I lived in Austin I saw them

frequently - eeek - but I grew up in Fort Worth and

have never seen a single one here, thank goodness.

At my house, I have lots of wildlife - racoons and

such, and lots of trees - but my old home was near a

rocky riverbed and we used to find about one

Copperhead per year. That was terrifying. Be careful

where you step!

Bruce,

Has all the chest pain stopped now? I hope so.

,

I keep thinking about your new house and hoping

that you REALLY won't go near as long as there are

still fumes and dust from the all the work. Okay??

Hope you get lots of help. I'll bet you're really

getting excited about the new baby's arrival.

Hugs and blessings,

Gwynne 56 IPF 7/04 listed for transplant 3/07 Texas

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[Guest guest]

He's been on it a few months - the doc thought maybe his heart was working harder & wanted to redo the heart cath - if it changed, it would help his listing for a transplant also - not really sure if he can tell if any difference - he's been listed for 5 months now.

Kim

meds

Kim and Tom,How long has Tom been on Tracleer, and howlong has he been waiting for a lung? I hope youget the call soon!I don't have PH, but Tracleer is one medmy doctor is considering having me start (if Iagree to it). Another is a cancer drug calledGleevec. ugh.Has anyone out there taken Gleevec? Were theside effects horrible?Peggy,Thanks for the kind words. Some days are a biggerstruggle than others, and the sob is a constant andnagging reminder of the disease. But I don't havechest or leg pain. I do have a transport wheelchairwhich, so far, I've used only when going to thehospital to the transplant clinic. It's lightweightand has to pushed by someone else.My son is coming tomorrow through Sunday, so don'tworry about me if I disappear temporarily. :-),I do hope you find a way to get to San . Itwould sure make everyone happy to see you, and Iknow it would do your heart good to meet them too.I'd love to give you a big hug myself. Your husbandsounds terrific.,I hope your cold is getting better in a hurry - thosenasty things can really drag you down, especiallywhen you're already sick.Mama Sher,I hope Lola's meds start working and will clear upher vasculitis soon. Misha seems to feel fine, butshe's still on 2 meds and will need to be recheckedin a few weeks. She's being a good sport about thefact that we had to stop giving her Greenies, herfavorite ( & only) treat. They make her vomit now,and we don't need that!Tina,Please keep us posted on how things go withthe Tracleer. I'll bet you did see some nightmarestories working for the attorney. We have to beSOOO vigilant and assertive in managing our owncare. I've seen several doctors in my life whoprobably deserved to lose their licenses. And it'sabsolutely horrible how the elderly are treatedby the medical community overall... makes me sick.Babs,Fortunately in our part of Texas we really neversee scorpions. When I lived in Austin I saw themfrequently - eeek - but I grew up in Fort Worth andhave never seen a single one here, thank goodness.At my house, I have lots of wildlife - racoons andsuch, and lots of trees - but my old home was near arocky riverbed and we used to find about oneCopperhead per year. That was terrifying. Be carefulwhere you step!Bruce,Has all the chest pain stopped now? I hope so.,I keep thinking about your new house and hopingthat you REALLY won't go near as long as there arestill fumes and dust from the all the work. Okay??Hope you get lots of help. I'll bet you're reallygetting excited about the new baby's arrival.Hugs and blessings,Gwynne 56 IPF 7/04 listed for transplant 3/07 Texas