Fwd: Kp- - on life

[Guest guest]

Forwarded with permission of KA. I found this a heart-wrenching chronicle

with hope!

Ken

>From: KA@...

>Date: Thu, 25 Jun 1998 17:47:15 EDT

>To: kturbin@...

>Subject: Kp- - on life

>X-Mailer: AOL 3.0 for Windows 95 sub 18

>

> Ken - I wrote this in May - took me three months after assignment to write

>something that was not full of anger, but it was very helpful for me to do

>this. Since then, I have undergone several more tests and have been dx with

>IBS, Diverticulosis, had a urodynamics and found that my bladder has dropped

>again (more surgery) and I I detrusor instability (which they will try to

>treat with electrical stimulation (sounds very strange) I also will be having

>a cystoscopy done because they found a small hematuria in my culture. I also

>am up to 32 meds a day - all of this because of a car accident and being

>turned down by SS last month didn't help either financially or emotionally -

>we are appealing of course and maybe this new info will help my case. I was

>also dx with OA of the hands because of changes in the formation of the

joints

>in my RH which makes it impossible some days to write, play the piano, just

>about anything.'But to make a long pity party story short - today I saw and

>spent time with someone who is much worse off than I and again I am thankful

>that my plate is not as full as her. Take care.

>

>KP…..on life

>I started this the same time as I began at my pain management clinic…as a

sort

>of documentation of what I have and still want to learn to live by.

>Although I did not know it at the time, on February 6, 1995 my life, as I

knew

>it was about to change permanently. I was involved in a car accident which,

>while leaving me in one piece, left me with a small permanent disability,

>problems with my back and neck and eventually a diagnosis of Fibromyalgia. I

>had never even heard of this prior to diagnosis. Since that date, I have seen

>countless doctors, tried countless medications, several different types of

>physical therapies, found out as much as I could about this diagnosis as I

>possibly could, and learned a great deal about life. I have tried to list as

>many of these things below as I can remember - some of them were extremely

>difficult to learn to live with, some still are, and some were and

continue to

>be a blessing in my life. So here goes and I hope that I remember to put them

>all down:

>I have learned and continue to learn that we are not able to choose what

>happens in life, only how we ourselves deal with it. This is where our

control

>is.

>I have learned and continue to learn about the stages of anger about an old

>life style that cannot be had, a career which will not happen, physical

>limitations, cognitive dysfunction, tremendous lifestyle changes, have weight

>lift limitations, the fact that I cannot wear high heels or carry a shoulder

>strap purse anymore, or go all day whether for fun or work - I have about a

>3-4 hr. maximum time span.

>I have learned and continue to learn that Fibromyalagia is very difficult to

>live with, very misunderstood, by both some medical professionals and the

>general population. The general feeling is that because one looks as though

>there is nothing wrong that they are fine, have no pain tolerance or must be

>making it up to avoid something. I have seen more doctors and taken more

>medicine in the past three years than in my 49/5 years of life on this earth.

>In regards to the medical professions general stance on this, I have been

very

>fortunate - I have a tremendous team of physicians. They work with people who

>have my dx to help combat the pain, learn to adjust lifestyles, and all that

>goes with this. More importantly, they believe there is pain - there are so

>many of us out there who are not as lucky. .

>I have learn and continue to learn that insurance companies, for the most

>part, are one of the most difficult, and sometimes the most ignorant

people in

>the world to work with and that one must learn to document everything and not

>to give up fighting for the services that need to be provided.

>I have learned and continue to learn that Fibromyalgia is a very real

disease,

>never can be cured and that one must learn to live with it and learn to

adapt.

>This is easier said than done, but the choice is either to give up or search

>constantly for what works.

>First, you know you will always hurt - that your level of what is

perceived as

>acceptable pain is always higher than the norm, that the pain pills will

>control some of the pain, but not all of it .I try very hard not to take

>narcotics, because even though they are right in my kitchen cabinet, I do no

>ever want them to become something easy to reach for . I know that I need to

>do daily exercises in order to keep the muscles from tightening. The

>stiffness, soreness, trigger points, cognitive dysfunction - sometimes to the

>point where one cannot function, drive or even think, getting words out wrong

>or at the wrong time, fatigue all of the time, that some days you just stand

>because it hurts to sit, that stress makes everything hurt more, and that

>headaches are never going to go away.

>There have been many other things which have happened during this time also

>for me. I am not a person for formal prayer, but I believe that there is a

God

>who loves us and is really there. I talk with my mother, sometimes not very

>pleasantly when I hurt really bad, but she is, in my heart, my direct link,

>and thus gets my woes, my humor and my prayers.

>I have really learned that I have a very hard working husband, who has spent

>his life trying to make lives better for others, expends a tremendous amount

>of energy doing this, but who knows me and when I am hurting will come home

>and make dinner or empty the dishwasher, or whatever is needed if it is a bad

>day! We have had to make several adjustments over the past couple of years,

>some pleasant, some not. When I cannot sleep at night , I get up and quietly

>leave because if I wake him up, he would worry and not get the rest needed to

>do his work, but then he gets upset and worries later when he is awake. There

>have been arguments, but humor, too. I used to be the one everyone at home

>could count on to know where anything at all was - no more. This was scary

for

>both of us, sometimes still is and has been one of the causes of quite a few

>arguments. It has also changed significantly, the plans we had made for our

>future retirement. I also know that he does not want me going back to work,

>even for the part time that one of my doctor's states I can do, because he

>truly believes that my decreased energy level would be used there and there

>would be nothing left for anything else in our lives and thus cause more

>problems. He would go out and get a part time job, if the doctor and medical

>bills become too much. I am a lucky person.

>I have learned that although I have three very busy sons, working hard on

>their own careers, and have a hard time thinking of mom as anything but what

>she used to be (a lot of times a pain in the neck!) or really understanding

>how this changes dad's and my life and the difficulties of adjustment for

us -

>that if I really need them, that I truly believe they would be there.

However,

>I also know what it is to be young.

>I have learned that most of my family and friends try hard to understand, but

>also recognize that unless one walks in another's shoes, they cannot really

>understand. There are some who are my lifeline, who I can call if I need a

>shoulder, or help, and there are some who feel quite differently. I recognize

>this is their choice, that each of us has a different way of choosing to live

>our lives and levels of understanding. At first it was hard and I really tore

>myself up over it, but it doesn't change things and I have made the decision

>to try and surround myself with positive people who try to view life

>proactively rather than reactively. I needed to take some steps that were

>difficult when the response was negative, but I have been very lucky to have

>found many others. All of us have issues, but one can deal with them in

>different ways. I also spend a great amount of time with young people.

>Children are great for distraction which help me constantly get through days,

>and contacts with friends, even phone calls talking about everything else are

>wonderful tools - they let other people know you are interested in their

lives

>- and not only what has happened to you. Some friends I have needed to let

go,

>because their friendship was destructive, only dealing with things which

could

>not be my primary focus, if I wanted to try and move on. This was very

>difficult then and still now, but I also recognize, that some relationships

>can be harmful.

>The computer, when I can sit, has some wonderful supportive, caring sites

>where I can get and try to give what is needed for so many of us. I print out

>much of the information, because my powers of retention are nil. For someone

>who used to eat books, now I frequently need to re-read a page 4-5 times to

>understand it. Sensory overload! !! I used to lose myself in my music and in

>puzzles. Now, because I cannot sit for long periods, I miss them both

>tremendously. Listening to music is not quite the same as creating it. There

>is a saying that goes something like: " Of all the things in life I have lost,

>I find it is my mind I miss the most. " Although there is some humor there,

>there is also truth. My brain does not work the way it used to, and this can

>be very frustrating.

>I have learned that there are two ways to handle things " pro-actively or re-

>actively. " It does not work for me to be reactive, it is counter-productive.

>Life is short, you do not control the time that you have here, so it is

better

>for me to choose positive things, to sometimes self select doing things which

>I know will hurt later, but will also provide me with a wonderful memory of

>life and living.

>To try to sum this up, I think if there was a type D person, this would be my

>goal. I try to be upbeat, cheerful, helpful - there is no point in being

>otherwise - nothing changes. I am trying to learn to live with sometimes very

>condensed versions of what I used to live with, keeping life as simple as

>possible when I can. This does not mean sheltering myself , because that

would

>not work either. Rather I just choose things more carefully than before, am

>grateful for smaller and simpler times and things in life and for the

people I

>have found who look for the same things . I also have learned that on the

days

>when I just have to give in and say " ok, this is not going to be a good day "

>and spend the day mostly resting because of headaches, or pain, that there is

>nothing really wrong with this or with me because I need to do this..for

>tomorrow.What is the saying…..behind every stormy cloud, ……there is a silver

>lining!

>

>

Turbin

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