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QuoteReplyTopic: A Letter to My Family and Friends,,, Posted: Oct/02/2010 at 7:56pm
I wrote this some time ago. I forgot that I had.
I had read something similar and decided to write my own. I have given it to a few people in my life.
Hello Family, Friends and Anyone Wishing To Know Me,
I want to talk to you about Fibromyalgia, and Rheumatoid Arthritis—both immune
diseases--in which my body is attacking itself. Many have never heard of these
conditions and for those who have, many are misinformed. And because of this,
judgments are made that may not be corrected…So I ask you to keep an open mind
as I try to explain who I am and how these conditions have not only affected my
life but those whom I love as well.
You see, I suffer from diseases that you
cannot see, diseases that there is no cure for and that keeps my doctors and
the medical community baffled on how to deal with these diseases who’s attacks
are relentless. My pain works silently, stealing my joy and replacing it with
tears, frustration and discouragement. On the outside we look alike you and I;
you won’t see my scars as you would a person who, say, had suffered a car
accident. You won’t see my pain in the way you would a person undergoing chemo
from cancer; however my pain is just as real and just as debilitating. And in
many ways my pain may be more destructive because people can’t see it and do
Please don’t be angry when you call to see if I am able to do something you
know I am interested in, serving as a Sunday school teacher or working on a
committee at church, it is not because I am not interested or don’t want to do
these things, I punish myself you can be assured of that. My tears are shed
many times when no one is around. My embarrassment is covered by a joke or
laughter (sometimes maybe just a smile cause I’m too tired to laugh or joke),
but inside I want to scream, sometimes I want to...
I don’t talk about how these diseases affect me much to anyone because of the
misinformation and misunderstanding that comes when I do talk. I keep these
things to myself, in doing so I seem to others as not personal or wanting to
share about what is going on. In doing this, it has isolated me a bit, makes me
feel different from others, and worries me that no one wants to be around me.
There are times I wonder if I am going crazy when I have put something away in
the wrong spot, toilet paper in the kitchen instead of the paper towels, or
putting something in the refrigerator that belongs in the cabinet. When I talk
to people, sometimes I cannot recall what word I want to use, I will say the
wrong word, mix up my words or the most embarrassing thing lose my train of
thought mid sentence. I try to maintain my dignity as these diseases ambush me
at every turn. Please try to understand…
Sleep, when I do have some, is restless; I wake often to change positions
because of pain somewhere in my body. I walk around most of my days in a daze
with the fog from the fibromyalgia as I stumble and grasp for clarity.
Just because I can do something one day does not mean I will be able to do it
the next day, next week or month. I may be able to take my dogs for a walk
around the block in the evening with my husband; the next day or next hour I
may not be able to walk up the stairs to lie down in bed, because my legs and
feet hurt. My family doesn’t even understand, they will say,” you did that last
night, or earlier today!” In surprise they will say “Are you all right, mom?”
They are not aware of how much it hurts to hear those words, the hurt goes
deep, because I feel I have let them down and they just don’t understand that I
Many days when someone asks how I am, I will say, I am doing okay; this
frustrates some people because they would like to hear something other than
okay. For me okay means that I am not in extreme pain, I am not overly tired
and I am doing the best I can. For me to answer in any other way would mean I
would have to cover up how I feel.
Many well meaning relatives, friends and acquaintances suggest that I look into
herbal remedies, vitamins, change my diet, and exercise more. While these
suggestions are well meaning, I have decided not to treat the diseases in the
manner those who have suggested. Fibromyalgia and rheumatoid arthritis are
immune disorders. My immune system is so disordered I have to be careful of
medications and natural remedies I take because of allergies and reactions from
them. I also have difficulties with elevated liver enzymes, taking over the
counter medications and herbal remedies would compromise my liver further.
To combat pain, exhaustion and the other symptoms I deal with sometimes I will
not take part in activities I enjoy; reading a book, talking on the phone, or
playing computer games, in order to conserve my energy to be able to go to work
or to do things that are important to me. Housework, laundry, cleaning and
errands may get left undone in order for me to conserve energy.
I have been asked about how I will handle my difficulties when I go out of the
country on mission trips. I have learned that I can rest when I need, take care
of myself in the weather and go to bed early in the evening if I need. My
teammates know my health difficulties and are happy to allow me to stay behind
in my bed if I need. They know my limitations and do not treat me any
differently than before they knew. I am thankful for this as I dearly love
serving in other countries.
I know that I have given you a lot to think about that is on the downside about
the diseases that I battle every day. I want to tell you things about me that
are on the up side. I love people; I like to have fun, laugh, joke and play. I
am very personable, loving, caring and kind. I love children, playing with
them, watching them play, giggling and having fun with them. I love visiting
with friends, serving those in the community and my jobs.
In my experience with Fibromyalgia, rheumatoid arthritis, and elevated liver
enzymes I have learned how to take care of myself, and listen to my body. I
have also learned not to allow these diseases to define who I am as a person,
and not become my identity. My identity is Gods child, who is precious, loved,
valued, full of worth and seen as a servant despite my health difficulties.
My journey with chronic pain began over 30 years ago, while as a young nurse working spinal rehab, I injured my back lifting a patient. I am now fused from L2-S1. I have multiple thoracic and cervical issues. I'm a retired RN/PA and I know and understand the frustrations on both ends of the treatment spectrum of dealing with CP. It's been my goal since 2008, when we started this site, to reach out and help as many people in pain as possible. We will continue the fight as long as we can. Please, if you can help us continue to help you and others, donate. Thank you.
Until one has felt the Love of an animal, a part of their Soul remains Unawakened.
1st injured Feb, 1997. Was told it was "Soft Tissue" and sent back to work - no X-rays Late 1997 attended 1st Rehab Program to strengthen back. Mid 98 PCP took me off work. Tried going back to work over the next couple years, mostly off work due to pain. June 2000, met with OS for first time. Did MRI , damage was L5-S1 totally blown out. Surgery done Jan, 2001. Another Rehab program late 2001, attempted to go back to work early 2002. Slipped on water, fell flat on back screw fusion broke. Went to 3rd Rehab program summer 2002. Oct 2003 - 2nd Surgery, due to broken screw, had to operate from the front. No improvement. Attended 4th Rehab program in 2004, at time It was decided NO work. March 2006, had 3rd Surgery, this time fusion and instrumentation from Si to L3. June 2008 Surgeon finally admitted I had Failed Back Surgery. August 2009 WCB Finally put me on Long Term Disability
You are welcome onnaroll. You could do the same if you would like. I often use ideas from others, I especially liked this because I could put it in words on paper. It took me a while to write it but it was well worth the work.
In the past I have cut out pictures from magazines to make collages to get my emotions and struggles out on paper. There was a time where I was not able to talk or write about certain things in my life, I ended up filling a sketch book with my collages. The book ended up being a great work for me, my therapist really liked it too, said you should think about publishing this!(I have yet to do that)
anyway, I try to find ways to express myself so that I can get it out.
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