Hi To my Loved TOSers and RSDers

[tshadow]

This is sort of rambling...sorry!

Dearest loved ones - and you that I know are loved and missed by me!

My docs concur that I had neuro TOS first, then due to continued working and no treatment, RSD followed and both are still here and not cureable. (Told not cureable by two world renown neuros now...so let's not fight about whether someone else's TOS may be cureable - it just may be! I'm talkin' 'bout me!)

So with that disclaimer laid, I may go into the hospital because I'm about 95% bedridden, with no energy to talk on the phone, can't do my own bills, etc. I'm pretty much just a blob, and no longer a smart blob - haha.

This last month I had a hard blow. I've lost a LOT of colleagues, family members, friends, etc., who couldn't "handle" my illness and did not take any time to understand it or give me any love. Now, one of my other friends of 30 years was here in CA visiting her sister, and I begged her to come by - (she used to always stay with me and fail to see her own family because we had such fun!) But anyways, I got really weird vibes from her again, so I just "outted" it - I asked, does my illness bother you? I won't write out what happened, as it's personal, but yeah, basically, she's got her life to live, and she can't handle my illness. I cried and cried. It's like losing a sister.

I have one friend left from highschool, and she's a sweetheart, but she's been busy with both of her parents dying. And then, because I was so sick on the days of their funerals - (actually, I cried so much I got myself worked up in a real flare) - that I couldn't get put together to even go in a wheel chair. (Pain was sky high, along with some other symptoms.) But THAT friend has actually forgiven me, sends me cute notes - like I said, she's a peach.

My ONLY other friends are those of you who know me from here, and I have to say, you are incredible. I don't want to embarass anyone, but the character of non-TOS/RSD or pain/disability people, vs. the character of YOU who have suffered and continue to do so - even while you try to help everyone on here that we can, and to start sites, and to email eachother and call - to be so darn sick and yet have your list of people you worry about, well, that's character. That's true love.

I have said it many times before, but I'll say it again, YOU all are really, really good people, and I am proud of being able to say I know some of you personally!
Ok, back to bed, head spinning, every time I have to "think"...

Lots of love. We need it. It helps. One person here actually saved my life by visiting me once. Powerful stuff on these boards!

[finz]

Hi Tamara. I'm so sorry you are going through such a difficult time. You have been such a source of information and inspiration to so many at braintalk. Perhaps it is very judgemental of me, but I have little tolerance for people like your old friend. Rather a fair weather friend she turned out to be. A true friend, I believe, would put a desire to help you feel better above their feelings of awkwardness around illness.

It must be awful to think about hospitalization because you cannot care for yourself. Does your doc offer any hope that with the right combo of meds and therapy that you will be able to get some mobility back ?

Take Care Tamara.

I'm glad to find this site again after the long downtime, but sorry to hear that you are not doing well.

I will pray for you.

[humorme]

Just what are your "expectations?"

She has a difficult time. Most people would. She came and you forced the issue. Now you know how she feels. She tried. You didn't like her effort. Move on.

I've read many of your posts in this forum and in the previous ones. In all honesty, they are quite down and needy and whiney. I think many members have stayed away from your posts for exactly that reason.

TOS is a very real condition that has a variety of consequences and pain. As with any condition one wants "relief" and one has to work for that relief. Many have and many have gotten relief. Only YOU can address what you have done or not done to get better. Complaining, bitching and whining are all "negative energy." You don't need "negativity" you need "positivity" Move on.

[j*sunset]

a negative and non supportive message is more of a downer - than a post by someone who needs a bit of support.


Merry Christmas and GOODWILL to all.

[tshadow]

Just what are your "expectations?"

She has a difficult time. Most people would. She came and you forced the issue. Now you know how she feels. She tried. You didn't like her effort. Move on.

I've read many of your posts in this forum and in the previous ones. In all honesty, they are quite down and needy and whiney. I think many members have stayed away from your posts for exactly that reason.

TOS is a very real condition that has a variety of consequences and pain. As with any condition one wants "relief" and one has to work for that relief. Many have and many have gotten relief. Only YOU can address what you have done or not done to get better. Complaining, bitching and whining are all "negative energy." You don't need "negativity" you need "positivity" Move on.


Out of my NINE paragraphs, only one was negative and about the loss of one of my friends. Perhaps you read everything too fast - skimming and not really taking into the message I conveyed - but the import of my post was this:

The friends I have here, that I have known in-person and not only from the Web - (wonder how many TOSers you've met compared to me, as we happen to come in all shapes and sizes and your only other post with absolutely no history or introduction appears to treat TOS like some sort of ortho condition which it isn't) - anyways, whether my TOS buddies are able to walk, use their hands, pre or post surgery, or one is even in a wheel chair (which several of us use for airports so we can get to where we need to for treatment) they are kind people, generous like you wouldn't believe, and the very BEST friends I've ever had!

As far as people ignoring my posts - did you check the other site? It got a lot of comments and hit a chord with many TOSers. You don't know the sheer volume of PMS, emails and calls I get every day, and wish I could respond fully - I really have no idea who you are, nor do you of me.

But God bless you anyways, and I hope God heals your heart and softens your attitude towards those who suffer severe neurogenic TOS and RSD, as I do, and many, many TOSers here. You also ignored my "disclaimer" which pretty much said I'm at the end of my rope right now. At this moment.

This is a VERY OLD issue at this site, whether someone can express their need for support, cry or complain. Those of us with neurogenic TOS which usually cannot be seen on imaging and often goes hand in hand with roving RSD (which is probably the worse pain on earth other than being burned to death) or those who have just been around the ringer with Work Comp or Insurance or SSI, well, sometimes they need a Big Shoulder to lay their head on, and most of us say, "Lean On, baby!" This IS the place to do it. If you can't lean on family, friends or your kids (NO!) and you can't afford a shrink or group, that leaves here, doesn't it? I'd rather have someone reach out for help, and then alert me to call them, than sit home in psychiatric isolation. A good TOS friend can often turn things around or have ideas for forward thought.

Compassion, Humorme. It doesn't cost anything. And go ahead and block me if my points don't Humor You .

[tshadow]

I forgot to add that I wish HumorMe and everyone a safe, warm holiday, and a fun New Year's Eve, even if it's spent home alone like mine!

God bless us everyone as teeny tim said so well...

[Aeryn]

I too have lost friends who could not handle the changes in my life or who found observing my life in the before/after comparisons too hard. Some had the "there but for the grace of Godl go I..." while others could not balance the new, slow, cautious me against the old cheetah speed me. That said, I've found letting go of people who can't deal with my illness to be a relief after some grieving of the loss.

I wrote my family and friends a letter about the changes TOS, chronic pain and illness has made in my life and emphasizes that I am still me. I explained what I needed and wanted from them and how important they still are in my life. Response has been terrific- many did not know how to deal or address these newer issues in my life and were afraid of offending me somehow. So, I gace them a "blueprint" of how I wanted to be treated and asked them to work with me together on taking those important relationships into my "new life". Most were happy to and remain pivotal in my world.

Here's a copy of what I wrote and could be adapted to your own words and ideas- why not help people understand you better by improving communication, understanding and knowledge levels? Give it a try if it feels helpful.

We've all lost people who couldn't handle our needs, situations, etc. I find that after a short grieving time, that I don't miss the ones who refused to meet me in the middle. It is sad, but my life no longer has room for people who refuse to live with and add positive things to my life.

Good Luck!




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For my loved ones:


 Let me help you to better understand my life by sharing some insights into my life and my condition. I do this because I care about you and you are important in my life. After you’ve had some time to think about what’s here, let’s talk about this and I’ll do my best to answer your questions.


Medicine and Science Thoracic Outlet Syndrome (TOS) is a complex condition in which motor nerve compression causes weakness in my arms and hand. Inside my chest, my arteries and veins are also compressed, restricting the circulation to my arms and hands.

 I often drop things, have problems lifting or using my hands in any way. I have trouble with simple movements such as opening a jar, sharpening kitchen knives, using a computer and brushing my teeth -- any task that makes me extend my arms, straighten my elbows, or perform “push-pull” motions.

 I have accepted that I will be living with TOS and chronic pain for the rest of my life and it is not easy to digest. My days of playing tennis and golf are over but I am thankful that I can still read to my heart’s content and find joy in so many activities.

 I live with a medical condition that requires me to live life in a different way. I find new ways of doing things and may not be able to do all the same things I used to do. At the same time, I can and do still live a fulfilling, productive and happy life.


Chronic Pain Imagine pain as a light switch that turns on when the body feels pain. After long-term continual (chronic) pain, the switch “breaks” and remains “on” all the time. The pain is constant whether I am active or not.
 Living with chronic pain is like being in a room where a radio is playing at too high a volume and there is no way to turn it down or off. It can be a huge distraction and prevent me from focusing 100% on conversations with you or tasks I ‘m trying to accomplish.
 If I don’t get your joke or immediately follow your train of thought, it probably means I’m struggling to push up through several layers of pain to where you are and having trouble getting there quickly. Loud noises and environmental distractions make it even harder. Keep trying- I’ll catch up with you in a minute or two.
 I work hard to not be miserable. If I sound happy, it means I'm happy. Please don't say, "Oh, you're sounding better!" or "But you look so healthy.” I am simply coping and trying to look normal. You won’t know how I’m feeling unless you ask.
 I can look fine, even when the pain has me close to tears. I know how difficult it is for me to understand and accept my fluctuating symptoms. It's even harder for others to get it, especially when I look the same through it all. Because my symptoms aren't (usually) visible, I’m nervous about what others believe about my health. When you say, “But you look fine to me.” I can wonder if that means you don’t believe I don’t feel well.
 We both know I have a lot of pride and it is so hard for me not to look as polished, attractive and energetic as before. I need your help and support to work through my pride and quit using precious energy to seem “normal.”

Unpredictability Chronic pain is variable. One day I can walk to the park and back and the next, I'll have trouble getting to the next room. “Getting out and doing things" does not make me feel better and can make me worse. I don’t know how I am going to feel when I wake up nor from minute to minute. This is one of the most frustrating components of chronic pain.
 Before TOS, spinal surgery and pain, I prided myself on my dependability and being there for my family and friends. Now, when I have to cancel our plans (often at the last minute), it rubs salt into the “wound” because I can no longer be that same dependable person we knew. Please do not take it personally. I struggle over making plans weeks in advance with you because I might have to cancel last minute. What do you prefer? Let’s work on this together.
 I know you want to help by telling me other people's success with getting better. But, Aunt Gertrude (whose pain disappeared with magnets) or your boss, Phil, (who was cured by a great chiropractor) aren't me. In all likelihood, if you've heard of it or tried it, so have I.
 When I mention my pain or chronic illness, please don't "skip" over it and look away or change the subject. I appreciate questions that show interest, such as, "What does that mean for you?" We don’t have to discuss my health in every conversation, but we shouldn’t ignore it all the time either. Let’s find that middle ground where we both are comfortable and the relationship is honest and nurturing for us both!.
 Please understand that if/when I say I have to sit down/lie down/stay in bed/or take these pills now, I can’t delay or ignore it. I can have problems and pain sitting for more than 5-10 minutes at a time. Don’t take it personally if I seem physically restless while we’re talking or eating. I am just trying to get comfortable.
 Once the pain starts, it may take hours, a day or more for the pain to subside. It doesn’t matter what I do, the pain has to run through the
 cycle and I have to be careful not to increase it by doing too much or pushing myself too hard.
Coping

 I use many “tools” to manage my pain: exercises, stretches, heat, ice, rest, positive visualization techniques and deep breathing. I also take pain medication. My doctors praise me for the very responsible way I use the medication. I don’t drive while on the medication, and I don’t take it to “feel good” or “escape” from the harsh realities of my life. The medication allows me to do things like taking showers, cooking meals, doing laundry and other activities of daily living. Please don't ask me for free pills or other medications if you hurt your back or have a migraine. Treating pain is a very individual process and what I take may not be the best choice for you! Please don't put me in the position of having to say no to you just because you know I have strong pain meds and you fear your doctor won't give you Vicodin, Oxycodone or other opiates for your headache, back pain, etc.

 Disability-related depression is common and I proactively manage it. Sometimes it feels as if my life was hit by a tornado when I wasn’t looking. Sometimes, I feel grief and sadness for what I can longer do. Sometimes, I forget how strong I am and how much I still have to offer you, my family, friends, and the world. I’m not giving up on me and I hope you won’t either.
 Disability-related depression is common and I proactively manage it. Sometimes it feels as if my life was hit by a tornado when I wasn’t looking. Sometimes, I feel grief and sadness for what I can longer do. Sometimes, I forget how strong I am and how much I still have to offer you, my family, friends, and the world. I’m not giving up on me and I hope you won’t either.
 I am doing my best to cope with this, and live my life to the best of my ability right now. I can now look to the future and set long term goals again for this new self. Bear with me, accept me as I am and try to understand my situation. I believe in your judgment and that you know best how to live your life. Please grant me the same respect and faith as I make my way down this road I didn’t chose but must travel.