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A Letter to My Family and Friends,,,

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tkay View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote tkay Quote  Post ReplyReply Direct Link To This Post Topic: 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.

Tammie


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 not understand.

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 am not…

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.

 

 

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Stevie View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Stevie Quote  Post ReplyReply Direct Link To This Post Posted: Oct/02/2010 at 9:57pm
This is beautiful and needs to be copied and pasted into the Medical Information and More Forum.   I will ask Sysop to please do it as that Forum is locked but only to him.

Will get this done tomorrow.  Thank you Tammie Kay.  This is wonderful.  Stevie

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Spinal Fusions L5-S1 and L4-L5. Recent changes now with diagnosis of Lumbar Stenosis with neurogenic claudication. To have multi-levl posterior fusion with laminectomy and decompression of L2-3 L3-4 and fusion and revision of L4-5 L5-1 with instrumentation. Cervical DDD, stenosis, spondylosis, spondylolisthesis and facet arthropathy throughout cervical spine from C3-C7. Thoracic Spine: dextroconvex curvature of the thoracic spine, centered at approximately T8.(Scoliosis with 20 degree curve). At T7-8, a disc bulge. Degenerative disc disease T7-T9. Disc dessication from T3-T11.


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Post Options Post Options   Thanks (0) Thanks(0)   Quote tkay Quote  Post ReplyReply Direct Link To This Post Posted: Oct/02/2010 at 9:59pm
You are welcome.

I used this as part of my journey in acceptence that I have diseases. The teaching leader part of me is always wanting to help people understand.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Rocken Roni Quote  Post ReplyReply Direct Link To This Post Posted: Oct/09/2010 at 3:20am
Tkay what a lovely essay. You sound like a very caring person.
I would love to meet you in person some day. You really know
how to write thats for sure. You also know your body very well.
Thanks for explaining FB we can actually see your pain through
you. Love to read your posts.
 
Roni :):)

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Until one has felt the Love of an animal,
a part of their Soul remains Unawakened.

Unknown


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
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tkay View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote tkay Quote  Post ReplyReply Direct Link To This Post Posted: Oct/09/2010 at 8:13pm
Thanks Roni.
As I stated above I used someone else's idea so I could write the letter.
I am glad my posts are enjoyable to read. I sometimes worry that they aren't enjoyable.

I started writing poetry and such after my grandma passed away in 2004. I would get a line in my head and then all the words would follow. This doesn't happen too often but when it happens I allow it.

Maybe some day we will meet. What a sweet time that would be. :)


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onnaroll View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote onnaroll Quote  Post ReplyReply Direct Link To This Post Posted: Oct/16/2010 at 1:16pm
Tammie I know your pain and this is beautiful, it really helps others understand where we are coming from thank you!
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tkay View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote tkay Quote  Post ReplyReply Direct Link To This Post Posted: Oct/16/2010 at 1:42pm
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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