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    Old 06-14-2003, 09:58 AM   #1
    BAXTER
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    Arrow To All, especially Linda Re: Living In Chronic Pain

    To All,

    I wanted to share something that I came across a few months ago with all of you, maybe by sharing this with your spouse and family members, they will have a better understanding of what we live with on a daily basis.

    I don't know who the Author is, but it's a great letter, and I'm very thankful to the person who supplied this to me [img]http://www.healthboards.com/ubb/heart.gif[/img]

    I hope this helps [img]http://www.healthboards.com/ubb/heart.gif[/img]

    LETTER TO PEOPLE WITHOUT CHRONIC PAIN:

    Having chronic pain means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about chronic pain and its effects, and of those that think they know, many are actually misinformed.

    In the spirit of informing those who wish to understand ...
    ... These are the things that I would like you to understand about me before you judge me...

    „« Please understand that being sick doesn't mean I'm not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit, sometimes I probably don't seem like much fun to be with, but I'm still me-- stuck inside this body. I still worry about school, my family, my friends, and most of the time - I'd still like to hear you talk about yours, too.

    „« Please understand the difference between "happy" and "healthy". When you've got the flu, you probably feel miserable with it, but I've been sick for years. I can't be miserable all the time. In fact, I work hard at not being miserable. So, if you're talking to me and I sound happy, it means I'm happy. That's all. It doesn't mean that I'm not in a lot of pain, or extremely tired, or that I'm getting better, or any of those things. Please don't say, "Oh, you're sounding better!" or "But you look so healthy!¨ I am merely coping. I am sounding happy and trying to look normal. If you want to comment on that, you're welcome.

    „« Please understand that being able to stand up for ten minutes doesn't necessarily mean that I can stand up for twenty minutes, or an hour. Just because I managed to stand up for thirty minutes yesterday doesn't mean that I can do the same today. With a lot of diseases you're either paralyzed, or you can move. With this one, it gets more confusing everyday. It can be like a yo-yo. I never know from day to day, how I am going to feel when I wake up. In most cases, I never know from minute to minute. That is one of the hardest and most frustrating components of chronic pain.

    „« Please repeat the above paragraph substituting, "sitting", "walking", "thinking", ¡§concentrating¡¨, "being sociable" and so on ... it applies to everything. That's what chronic pain does to you.

    „« Please understand that chronic pain is variable. It's quite possible (for many, it's common) that one day I am able to walk to the park and back, while the next day I'll have trouble getting to the next room. Please don't attack me when I'm ill by saying, "But you did it before!" or Oh, come on, I know you can do this!¡¨ If you want me to do something, then ask if I can. In a similar vein, I may need to cancel a previous commitment at the last minute. If this happens, please do not take it personally. If you are able, please try to always remember how very lucky you are--to be physically able to do all of the things that you can do.

    „« Please understand that "getting out and doing things" does not make me feel better, and can often make me seriously worse. You don't know what I go through or how I suffer in my own private time. Telling me that I need to exercise, or do some things to get my mind off of it¨ may frustrate me to tears, and is not correct if I was capable of doing some things any or all of the time, don't you know that I would? I am working with my doctor and I am doing what I am supposed to do. Another statement that hurts is, "You just need to push yourself more, try harder..." Obviously, chronic pain can deal with the whole body, or be localized to specific areas. Sometimes participating in a single activity for a short or a long period of time can cause more damage and physical pain than you could ever imagine. Not to mention the recovery time, which can be intense. You can't always read it on my face or in my body language. Also, chronic pain may cause secondary depression (wouldn't you get depressed and down if you were hurting constantly for months or years?), but it is not created by depression.


    „« Please understand that if I say I have to sit down/lie down/stay in bed/or take these pills now, that probably means that I do have to do it right now - it can't be put off or forgotten just because I'm somewhere, or am right in the middle of doing something. Chronic pain does not forgive, nor does it wait for anyone.

    „« If you want to suggest a cure to me, please don't. It's not because I don't appreciate the thought, and it's not because I don't want to get well. Lord knows that isn't true. In all likelihood, if you've heard of it or tried it, so have I. In some cases, I have been made sicker, not better. This can involve side effects or allergic reactions. It also includes failure, which in and of itself can make me feel even lower. If there were something that cured, or even helped people with my form of chronic pain, then we'd know about it. There is worldwide networking (both on and off the Internet) between people with chronic pain. If something worked, we would KNOW. It's definitely not for lack of trying. If, after reading this, you still feel the need to suggest a cure, then so be it. I may take what you said and discuss it with my doctor.

    „« If I seem touchy, it¡¦s probably because I am. It's not how I try to be. As a matter of fact, I try very hard to be normal. I hope you will try to understand. I have been, and am still, going through a lot. Chronic pain is hard for you to understand unless you have had it. It wreaks havoc on the body and the mind. It is exhausting and exasperating. Almost all the time, I know that I am doing my best to cope with this, and live my life to the best of my ability. I ask you to bear with me, and accept me as I am. I know that you cannot literally understand my situation unless you have been in my shoes, but as much as is possible, I am asking you to try to be understanding in general.


    In many ways I depend on you - people who are not sick. I need you to visit me when I am too sick to go out... Sometimes I need you help me with the shopping, cooking or cleaning. I may need you to take me to the doctor, or to the store. You are my link to the normalcy of life. You can help me to keep in touch with the parts of life that I miss and fully intend to undertake again, just as soon as I am able.

    I know that I asked a lot from you, and I do thank you for listening. It really does mean a lot.

    AUTHOR UNKNOWN

    -------------------------------------------------------

    TIPS FOR DEALING WITH PEOPLE IN PAIN

    1. People with chronic pain seem unreliable (we can't count on ourselves). When feeling better we promise things (and mean it); when in serious pain, we may not even show up.

    2. An action or situation may result in pain several hours later, or even the next day. Delayed pain is confusing to people who have never experienced it.

    3. Pain can inhibit listening and other communication skills. It's like having someone shouting at you, or trying to talk with a fire alarm going off in the room. The effect of pain on the mind can seem like attention deficit disorder. So you may have to repeat a request, or write things down for a person with chronic pain. Don't take it personally, or think that they are stupid.

    4. The senses can overload while in pain. For example, noises that wouldn't normally bother you, seem too much.

    5. Patience may seem short. We can't wait in a long line; can't wait for a long drawn out conversation.

    6. Don't always ask "how are you" unless you are genuinely prepared to listen it just points attention inward.

    7. Pain can sometimes trigger psychological disabilities (usually very temporary). When in pain, a small task, like hanging out the laundry, can seem like a huge wall, too high to climb over. An hour later the same job may be quite OK. It is sane to be depressed occasionally when you hurt.

    8. Pain can come on fairly quickly and unexpectedly. Pain sometimes abates after a short rest. Chronic pain people appear to arrive and fade unpredictably to others.

    9. Knowing where a refuge is, such as a couch, a bed, or comfortable chair, is as important as knowing where a bathroom is. A visit is much more enjoyable if the chronic pain person knows there is a refuge if needed. A person with chronic pain may not want to go anywhere that has no refuge (e.g.no place to sit or lie down).

    10. Small acts of kindness can seem like huge acts of mercy to a person in pain. Your offer of a pillow or a cup of tea can be a really big thing to a person who is feeling temporarily helpless in the face of encroaching pain.

    11. Not all pain is easy to locate or describe. Sometimes there is a body-wide feeling of discomfort, with hard to describe pains in the entire back, or in both legs, but not in one particular spot you can point to. Our vocabulary for pain is very limited, compared to the body's ability to feel varieties of discomfort.

    12. We may not have a good "reason" for the pain. Medical science is still limited in its understanding of pain. Many people have pain that is not yet classified by doctors as an officially recognized "disease". That does not reduce the pain, - it only reduces our ability to give it a label, and to have you believe us.

    Be Well,
    Baxter [img]http://www.healthboards.com/ubb/love2.gif[/img]


    ------------------
    Two level laminectomy fusion L5-S1 & L2-3 done on 12/6/02.
    I regret the day that I agreed to have this surgery.
    Fifteen inch scar from the very top of butt crack (sorry), to the bra line.
    BAK cages, rods & screws.(Titanium)
    My pelvic bone was used for grafting.
    Praying that the other two discs in between, won't have to be fused later, as I was told it was a possibility, due to the other two discs in between, not being in that great of shape.
    Doc didn't want to fuse four levels, unless it is really necessary.
    I would hate to repeat the surgery, as the recovery period, is so very painful.
    I also have a free fragment in my T11-12 area, that I'm still refusing surgery for, at this point in time.
    That surgery is way too dangerous for me to consider, until if affects my being able to walk.

     
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    Old 06-14-2003, 12:32 PM   #2
    twinkie41
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    HI Baxter

    Oh my gosh [img]http://www.healthboards.com/ubb/bang.gif[/img]
    Thank you so much for this!! It is exactly how I feel but I didn't know how to express it. So many times the last couple of weeks (since I have gone back to work) I have heard, "Oh you must be doing better, you have gone back to work." Or "Well, I am glad to see you are well now." These people just don't realize the pain I feel from just trying to make a day at work. I did not go back to work because I am "well"...I went back because of our financial situation...and I have come to realize that it was too soon. I am praying I don't do even more damage.

    People often mistakenly believe that because you are working then your pain can't be that bad. I worked until the Friday before I had surgery on Monday...and they just don't realize the extreme pain I was in. I literally had chill bumps and nausea because I hurt so bad.

    Anyway...thank you so much for this. I printed it out and I intend to strongly suggest that my family and friends read it.

    Like I said before...you must have been appointed one of my Guardian Angels. Thank you so much, Baxter. May God Bless You!
    Wishing you pain-free days.
    Love [img]http://www.healthboards.com/ubb/love1.gif[/img]
    Janice

    ------------------
    April 14, 2003 - L5S1 laminotomy/decompression of the spine. 5 hour surgery. One nerve almost severed by herniation, two nerves adhered together b/c of inflammation.
    __________________
    April 14, 2003 - L5S1 Partial laminectomy/discectomy. 5 hour surgery. One nerve almost severed by herniation, two nerves adhered together b/c of inflammation. Neurosurgeon had to reattach the almost severed nerve. He also coated the nerves that were stuck together with silicone.

    May 27, 2003 - returned to work full time. The first week was agonizing.

    July 1, 2003 - still having a lot of pain. The last two weeks the pain is different...it has moved to the right side, just above my hip. It is a stabbing, burning pain, very severe. I still have no feeling down the back of my left leg, the outside of my left foot and my two smallest toes. Appointment with the neurosurgeon July 8...my three month visit.

    July 8, 2003 - Neuro vist. He ordered another MRI ASAP. He is sure the disc has re-herniated and will probably want to do surgery again. Either another partial laminectomy/discectomy or fusion.

    July 16, 2003 - MRI With- and without-contrast - hopefully will tell us what is going on and why I am in so much pain.

    July 21, 2003 - MRI results show that the disc has re-herniated on the same side and that I have "significant" scarring. The neuro doesn't want to wait until August 5 to see me. I have an appointment next Tuesday. (July 29)

    August 5, 2003 - Going crazy with worry. I have never been as scared of anything as I am this surgery!

    August 13, 2003 - Scheduled for surgery. Fusion with a cage, rods, screws and bone marrow from my hip.

     
    Old 06-14-2003, 12:52 PM   #3
    jdlfmc
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    Baxter I have tried to reply to this now for the 3rd time and the pain is to bad to sit here any longer.I just have to put a quick thank-you in I have printed it and will pass around to hubby and family.Gotta Go will be in touch soon I hope.
    Linda

     
    Old 06-14-2003, 01:25 PM   #4
    BAXTER
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    Hi Janice & Linda,

    I'm so glad that you liked this, it was as if the words were rolling out of my own mouth [img]http://www.healthboards.com/ubb/gabby.gif[/img]

    Maybe this will help people understand us better [img]http://www.healthboards.com/ubb/heart.gif[/img]

    I hope that you both start to feel better soon

    Gotta Run.........

    Have a super weekend

    Take Care,
    Baxter [img]http://www.healthboards.com/ubb/love2.gif[/img]




    ------------------
    Two level laminectomy fusion L5-S1 & L2-3 done on 12/6/02.
    I regret the day that I agreed to have this surgery.
    Fifteen inch scar from the very top of butt crack (sorry), to the bra line.
    BAK cages, rods & screws.(Titanium)
    My pelvic bone was used for grafting.
    Praying that the other two discs in between, won't have to be fused later, as I was told it was a possibility, due to the other two discs in between, not being in that great of shape.
    Doc didn't want to fuse four levels, unless it is really necessary.
    I would hate to repeat the surgery, as the recovery period, is so very painful.
    I also have a free fragment in my T11-12 area, that I'm still refusing surgery for, at this point in time.
    That surgery is way too dangerous for me to consider, until if affects my being able to walk.

     
    Old 06-14-2003, 04:44 PM   #5
    pajamasam
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    Hi Baxter That letter was very cool [img]http://www.healthboards.com/ubb/cool.gif[/img] It is cery much like a letter I sent to my family after being diagnosed with Fibromyalgia. Each statement you made give voice to all of us with any kind of chronic pain. Sometimes the worst part of chronic pain is the lack of support and understanding and compassion from those nearest to use Dealing with Fibromyalgia is difficilt in itself, but now with this back surgery and probably more surgeries ahead, I feel like I've been dealt a double whammy. I too am going to print your letter out and "remind" my family about how MY life is. Thanks for a great tool.By the way Baxter, reading your posts makes me think that you are some wise man like the guy who sits on the mountain and people ask him the meaning of life [img]http://www.healthboards.com/ubb/grad.gif[/img] How'd you get to be so smart, and do you have a long beard and wear robes??? just kidding. Hoe your weather nice. It's sunny and 85 here today.

    ------------------
    Find something positive everyday!
    __________________
    Find something positive everyday!

     
    Old 06-15-2003, 03:15 AM   #6
    Chelley8401
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    Hi Baxter!
    Thank you so much for posting that..Its everything I've tried to say (to family and friends) and couldnt. After my husband's first bike accident, he ruptured his achilles tendon very badly, and was "laid up" for about 3 months. He remembers all too clearly what it was like not being able to do things for himself, so in that respect he does understand what I'm going through. The part in that letter where it talked about things that are simple for others, yet we cannot tolerate really hit home with me. There are times I cant tolerate being touched, AT ALL. I never say anything to my husband when I feel this way, as I dont want to hurt his feelings. (I did mention it once, and for awhile he was afraid to touch me at all, that was worse) Anyway, thank you so very much for sharing that with us. You are indeed a guardian angel I wish you well, my friend. May you find relief from your pain. Chelley
    __________________
    Had spinal tap 3/02 to treat severe high pressure headaches. Having NEVER had back issues before LP, I am now being treated for severe joing and nerve damage And DDD, First ESI, 2/25/03. Second ESI, 3/18/03. Third ESI, 4/8/03. SI/Facet joint injections, 5/6/03.

     
    Old 06-16-2003, 06:53 AM   #7
    ChristinaD
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    Thanks Baxter,
    I am emailing that to my friends and family asap. This is what I have been trying to say to them for so long and although they will never fully understand, it is as close as they will come. (As I sit here with tears in my eyes hoping that they will understand even a little bit)
    Thanks again,
    Christina [img]http://www.healthboards.com/ubb/heart.gif[/img]
    __________________
    27 years old
    1993: T1 to L1 fusion due to scoliosis at age 17
    2000: Tore and ruptured L4 L5 & L5 S1-it finally got better after about a year. Did really well for about a year.
    June 2002: Had a relapse and tore/ruptured disc again.
    Now I'm 14 months into it and the pain is still there.
    Can't deal with it anymore so I'm having a discectomy in Sept. Hoping and praying that it takes care of my problems!!

     
    Old 06-16-2003, 07:16 AM   #8
    Patmg
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    Hi Baxter: Haven't been here much; I just hurt too much. Again, Baxter, you have displayed your kindness and sensitivity to us. You truly have a "heart of gold" and I KNOW that, simply by the response you gave to me, when I returned to these boards. To read things you write are very heart warming and certainly "hit the spot" at just the right time for me. Baxter, if you have ever wondered "why me" in times of pain, please be sure to know, part of your suffering has shown that you have a wonderful ability to comfort those who also suffer.

    Thank you very much for sharing this article on this site. It truly says what I've certainly been trying to tell others. Take care and hugs, Patmg

     
    Old 06-16-2003, 08:27 AM   #9
    grizzk62
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    Hey Baxter,

    I loved that. I too printed it off and showed it to my wife. She was kind of shocked a little as she read. Even though that she has lived with me during the entire time I have been in chronic pain she has never been able to fully understand because of my inability to communicate it too her in terms that she could understand from me. Reading this has given her a piont of view from a piont that she could relate to. Thank you. When we are in pain the way we are 24/7 it is at times very hard to talk with the ones we love in a way that they can understand. Again thank you for the post I will be giving a copy to all the people in my life......

    Matt

     
    Old 06-16-2003, 09:02 AM   #10
    BAXTER
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    Hi All,

    Thank you so much for all of your very kind words [img]http://www.healthboards.com/ubb/heart.gif[/img]
    I'm so glad that you all liked this, it really hit home for me, and I just wanted to share it with all of you [img]http://www.healthboards.com/ubb/heart.gif[/img]

    I hope that you are all having a pain free day

    Have a terrific week

    Be Well,
    Baxter [img]http://www.healthboards.com/ubb/heart.gif[/img]

    ------------------
    Two level laminectomy fusion L5-S1 & L2-3 done on 12/6/02.
    I regret the day that I agreed to have this surgery.
    Fifteen inch scar from the very top of butt crack (sorry), to the bra line.
    BAK cages, rods & screws.(Titanium)
    My pelvic bone was used for grafting.
    Praying that the other two discs in between, won't have to be fused later, as I was told it was a possibility, due to the other two discs in between, not being in that great of shape.
    Doc didn't want to fuse four levels, unless it is really necessary.
    I would hate to repeat the surgery, as the recovery period, is so very painful.
    I also have a free fragment in my T11-12 area, that I'm still refusing surgery for, at this point in time.
    That surgery is way too dangerous for me to consider, until if affects my being able to walk.

     
    Old 06-16-2003, 11:46 AM   #11
    BackWoes Lisa
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    Baxter,

    Once again your wisdom and day to day smarts comes shining thru !!!!

    Like I have said so many times, we become our pain, we forget the person we once were.

    what you wrote describes our life in pain with details

    thank you

    L

     
    Old 06-16-2003, 11:47 AM   #12
    BackWoes Lisa
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    Baxter,

    Once again your wisdom and day to day smarts comes shining thru !!!!

    Like I have said so many times, we become our pain, we forget the person we once were.

    what you wrote describes our life in pain with details

    thank you

    L

     
    Old 06-16-2003, 10:07 PM   #13
    twisten
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    Baxter that was truly wonderful and comes at a most needy time for me. Thank you very, very much.
    __________________
    Crohn's disease, scoliosis, chronic myofascial pain, migraines, Osteoporosis, Trigeminal Neuralgia.

     
    Old 06-17-2003, 03:57 AM   #14
    mokita
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    Baxter :wave1:

    This is an awesome letter! I printed it out and plan to keep it handy! Even if I don't give it to anyone, I HAVE it!

    Thank you so VERY much for being a great support to so many people here! You are truly wonderful! [img]http://www.healthboards.com/ubb/love1.gif[/img]

    Karen

    ------------------
    9/22/00 24 hour labor, baby posterior, left tailbone killing me
    12/00 MRI - PCP said nothing amiss - but, had to begin taking vicodin
    2/8/02 - 2nd baby born after long, painful pregnance as weight gain
    2000-11/02 various PT + pain meds
    11/02 Referred to Neuro
    3/03 NEW MRI - shows slight bulge L3-L4,slight DDD Neuro Refers to PM for ESI
    3/03 PM Doc orders ESI
    3/21,4/1,4/8 - ESI's no help
    5/9 - Discogram - shows Tear L4 w/ significant leak onto nerves, DDD
    Doc sched NEW discogram 'cuz performing doc oversedated, False Negative
    New Consult w/ Dept Head Cleveland Clinic 7/8

     
    Old 06-17-2003, 05:48 AM   #15
    BAXTER
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    Good Morning All,

    I'm so glad that this has helped you all, I also thought it was terrific

    Have a super week [img]http://www.healthboards.com/ubb/dance.gif[/img]

    Take Care,
    Baxter [img]http://www.healthboards.com/ubb/heart.gif[/img]

    ------------------
    Two level laminectomy fusion L5-S1 & L2-3 done on 12/6/02.
    I regret the day that I agreed to have this surgery.
    Fifteen inch scar from the very top of butt crack (sorry), to the bra line.
    BAK cages, rods & screws.(Titanium)
    My pelvic bone was used for grafting.
    Praying that the other two discs in between, won't have to be fused later, as I was told it was a possibility, due to the other two discs in between, not being in that great of shape.
    Doc didn't want to fuse four levels, unless it is really necessary.
    I would hate to repeat the surgery, as the recovery period, is so very painful.
    I also have a free fragment in my T11-12 area, that I'm still refusing surgery for, at this point in time.
    That surgery is way too dangerous for me to consider, until if affects my being able to walk.

     
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