Was Oxy now Fran

[Guest guest]

Fran,

I think that each case needs to be evaluated individually however,

currently approaches within the medical field due to managed care have

more to do with a one-size-fits-all mentality. I work FT in the medical

field as an outpatient mental health therapist....I was diagnosed with

PsA about 6 years and Fibro 4 years ago but symptoms began to emerge

almost 11 years ago....and less then a month ago I turned 40. Because

my husband has reached the age of 63 and we have 2 children, I must work

to maintain medical insurance so finding the least restrictive meds that

work for me and allow me to carry on with my life and responsibilities

is a must...plus I find a huge correlation between the level of

depression experienced with both chronic pain and being on diability and

absorbing the title of " being disabled " . I was given a 30 day supply of

Vicodin following the birth of my second daughter 14 months ago, when I

asked how soon I could drive, my OB/Gyn reported not while taking any

Vicodin....I think I took 2 tablets total and resumed taking the

Ultram/Ultracet.

My guess is that many times how and what drugs are prescribed tends to

be regionally....here in the Pittsburgh area obtaining narcotics for

anything is very easy...either legally or illegally....and we just had a

PCP busted over tax evasion and jailed....that was the only way to stop

his reign of terror of handing out scripts and bottles for cash in

parking lots and becoming known as a " pill pusher " ...as a result of his

actions....the community is dealing with a huge influx of addicts all

due to a money-crazed doctor and people who have been in pain.

Narcotics were never designed to be a long term stabilization medication

and do need to be properly monitored and followed up with additional

kinds of therapies to insure that dependency both physically and

mentally is avoided. I think that many of the Pain Management centers

do offer this kind of care and with the emergence of new medications to

treat PsA symptoms hopefully the reliance on habit forming medications

will not be quite the issue that it is today.

The reality is that we need to learn to live with chronic pain and I

think that we are often looking for that magic cure...I tend to try and

believe that while having these medical conditions " sucks " that there

are far worse that I could have been diagnosed.....I think attitude plays

a huge part in how this disease is treated.

I am lucky in that my peer therapists are wonderfully supportive and

have their own medical issues so we tend to give each other tune ups as

needed and I am very active with my kids and family, showing dogs and

professionally and plan on remaining that way. My mother has been a

huge inspiration to me...almost 3 years ago she was diagnosed with

cervical/vaginal cancer....and had to go through both chemo and

radiation...her perspective throughout her treatment was that she

invisioned herself being cancer free and truly bought into that

perspective...it carried her through days of laying in the bathroom

sick, isolated in a hospital room with rods of radiation inserted into

her, and with each and every test.

Each day we have the capacity to decide if we are a victim, a survivor

or thriver with each and every thing that crosses our path...we may not

have the option of having PsA or not.....but, we do have the option to

choose how we allow it to impact our lives.

Dawn B.

[Guest guest]

Dear Dawn,

First of all, I’m glad your PA isn’t so bad that you still are able to work.

I know that can’t be easy even with the amount of pain you do deal with

everyday. Like you stated in your email, all of us are different. We all

have different levels of the disease, have had it longer or shorter periods

of time, have a low or high pain tolerance, and some of us deal with other

problems as well as just PA.

I can understand how you feel about narcotic drugs working in a hospital and

you must see the abuse side of narcotics on a daily basis or at least hear

about it. I agree that narcotic drugs were not made to be taken everyday

for the rest of our lives, but unfortunately for some of us there isn’t a

choice. I didn’t choose to be a victim. Far from it, and I fight that

thought if it ever pops into my mind. I have to admit that I do miss the

things I used to be able to do. Things like being to be able to walk freely

without the use of a cane or a wheelchair would be wonderful and amazing to

experience again. Or not having my jaw pop and ache all the time would be

wonderful. Never to experience a migraine for facial spasms from the nerves

being compressed due to PA destroying my jaws would be lovely. Never

feeling my bones rub together when I move would be fun, as well as never

watching my joints turn red, ache and sting is another thing I could easily

never miss. Since I developed erythromelalgia from PA, I sure wouldn’t miss

my skin turning bright red and burning like I’ve left my hand under the

broiler for 10 minutes or that same feeling felt on my feet, face and neck

every day. If having those things happen to me makes me a victim, then I

guess I fit your description of a victim. I fight with everything I’ve got

against this disease everyday. Unfortunately not all of us respond well to

the new meds on the market for PA, or some of us have PA that is simply

uncontrollable, as my rheumatologist has stated. It’s not fun and I wouldn’

t recommend it to anyone. I do miss all the vacations, working with my

husband in our family business, being able to go out to lunch with my

daughters, drive, or even able to leave the house for more than just doctor

appointments. I can personally tell you that no amount of willpower,

self-talk, or optimism would change the shape of my joints on my X-rays or

lower the inflammation in my body.

I will also tell you that having a positive attitude is wonderful and it

does help day to day. I go out of my way to still smile everyday and to

thank God for all the good things I’ve had and still do have in my life. I

do my best to avoid stress since we all know it makes things much worse. Yet

you can grieve for what you have lost and not be a victim. Everyone always

tells me my outlook is so amazing though I have to admit they rarely see me

in my worst moments. I know there are worse diseases than PA, but I’m not

only dealing with PA and personally what someone else has doesn’t influence

how I feel every day. I do think PA is a lot more painful than most doctors

understand, unless they are really updated on the disease. My

rheumatologist has told me several times it can be worse than RA simply

because it attacks the ligaments and tendons along with the joints. My

ligaments and tendons are also torn, ripped and inflamed from my PA in my

knees, elbows and shoulders, at least those are the ones we know of. Again

a lot of us never have to experience all of these great things this disease

can give you simply because a medication is working for them, or simply

their disease never progressed to that level.

Mainly I think until you have walked in everyone’s shoes you shouldn’t judge

them on how they treat their pain. We all try and find what works the best

for us and I’m glad you can continue to work. I’d love nothing more than to

be able to still work in our family business since I loved every minute of

it. You simply can’t know another person’s pain unless you can somehow feel

what they feel. Just like it’s not possible to call everyone a victim

simply because they can’t work or choose to use pain medication to treat

their chronic pain. It would be wonderful if pain meds didn’t have any

side effects. I’ve often felt that way about predinsone, and all the other

arthritis drugs on the market that can cause ulcers and all other kinds of

GI problems. But until they come out with something that controls the pain

without side effects, all you can do is trust your doctor and do what is

best of yourself, regardless of what the rest of the world happens to think.

I’m happy that your PA has been controlled enough that you can still

function, work, walk and take care of your family. I would consider myself

very lucky to be able to do what you can do each day. I hope and pray that

PA never takes away from you all it can and has done to others.

Take care, Fran

[Guest guest]

Fran, I'm sorry you're going through so much and can only wish for a remission

for you!  As someone who has experienced severe pain, I understand. Thankfully,

I never thought of suicide but can certainly understand how people cannot

tolerate any more.  I'm sorry to learn of your friend - that's horribly

sad.  Personally, while in pain, I would think that nobody in any hospital was

in as much pain as I was at home, as the hospital wouldn't allow it.  Of course,

I know that just when you've think you've peaked in how much pain there is,

there is more.  As others have mentioned, I've experienced the questions from

family, friends, etc. on whether I'm on or off pain meds.  Only my husband knew

how bad things could get.  While others thought they've witnessed my bad times,

they hadn't even seen a piece of how it could be, because I would be home and in

bed during those times.  As things progressed, that all became less important. 

Yes, I've thought

about dependency as I'm scared to be out of my pain meds but really I was

afraid of being in unbearable pain.  The way I would " protect " myself

of avoiding dependency was to openly tell my doctors, my p therapist and my

husband what I was taking, how much and how often.  After my surgeries, I would

try to taper off and when I had to go back up, I would share it with my

husband.  I've mentioned, I stopped cold-turkey a week and a half ago after

years of being on the drugs pre and post my joint replacement surgeries.  I

didn't want to use up my remaining pills, as the fear of severe pain is always

with me.  Thankfully, I'm doing well and while I hurt, I'm not needing the

narcotics.  This means that I'm already seeing the relief of my surgeries for

which I'm truly grateful.  Yes, I still have pain in multiple joints, my muscles

and tendon's in my legs are in knots and my lower back is angry at me.  However,

I'm able to control it with my

other arthritis drugs and some generous massages from my husband.  Ironically,

my husband said he never understood how unbearable pain could be until he had

kidney stones last year which required surgical removal.  He said that

experience " opened his eyes " and taught him how much love and support made him

feel better.  The last point I want to make is that I would gather that the

majority, if not all, of the people on this board are the type that do their

best to keep positive, despite our experiences.  I say that because this group

is seeking education and support and has not resigned to pain and pity. 

My experiences on my leadership work for people with different abilities has

been similar.  I've witnessed some of the most inspiring people who suffer or

deal with terrible circumstances.   Feel good! 

[Guest guest]

Fran,

I am not judging just pointing out that while everyone's PA can vary

and that NONE of us have been given the choice to have this disease,

we ALL have the opportunity to choose how to handle it....and as bad

as this can be....I can guarantee that waking up and discovering

that you've become addicted to pain meds will only make it far more

worse...because the pain becomes more than just physical.

How we choose to handle it is more than just self-talk or will power

and while it won't change the physical changes that may be occurring,

it's the only part of this we can control. Sometimes that means

allowing ourselves to grieve and recognize when we do need to cry,

scream and just be held.

Perhaps there are avenues that you and your rheumy are either

unaware of our haven't tried that could ease your pain and

discomfort. I know that participating in the water therapies have

done amazing things as well as other OT and PT therapies, some

vitamin and herbal supplements, diet and even seeking out a

therapist that has experience with pain management.

We have the capacity to decide if we define ourselves based upon

this disease or others....I don't know what my future holds for me

and I am terrified many days when I read the list of what MY reality

may become yet, I have accepted that while PA and F is part of me,

it's not who I am...and that I can control.

Dawn B.