[dahlek]

Billye brought up, and Daniella and others agree, that sometimes we are on some sort of surreal merry-go-round what with the medical issues and problems, dealing with doctors who won't/can't coordinate our TOTAL care. Then us dealing with the side effects: Stress, progression of our condition[s], and the complicating side effects of treatments.

In all honesty I think we all could 'do' with a reading of the Chronic Pain forum here and at other sites/resources. Why? Because we are part of a larger community of pain sufferers, because we might just learn some 'tricks' on how to cope, and because we might just learn where to guide those who care for, or with us to learn how to cope as well.

Having constant, chronic pain, is well just that: A PAIN! Living with those who 'get it' or those who 'don't' is an additional pain as well.

There are no 'formulas' to deal with 'it all' easily. Being ill, with either a chronic, hereditary or acquired disorder requires the same efforts [WORK] to understand and deal as best possible with each problem or problems.

YES! it IS frustrating! It is frightening as well....the unknowns of our varied and often multiple medical issues are beyond scary. But, finding and using the tools...and there are many out there...to deal with these things.

What inspires me to write this, is that I have a friend who has been battling cancer for over 10 years...This person has particpated in more clinical trials for cancer therapies than all of us on this board [in any clinical trials that is].
This person recently fractured her pelvis and also a leg and is wheelchair bound due to that...the bones are more fragile than ours due to all the immune system blockers and other really toxic meds taken over the years...YET..YET, while now knowing they are on borrowed time...is still fighting in a way that embarasses me whenever I even think about my pains...As many here inspire me? This one individual HUMBLES me with the tenacity of mind over matter and the belief that these conditions can be beat!

This isn't to say that our own concerns and complaints aren't valid? They most certainly are! But, it's more like we need to keep them in perspective and use all the resources we have available to keep them just where they belong...IN PERSPECTIVE

As another dear friend who is also seriously ill with a neuro disease is that we must make 'Lemons into Lemonade'! Simply put? We have to!

Thanks for listening - hugs and hope to all - j

[BEGLET]

Dahlek - you are so right....

and after just spending some true time relaxing this AM for the first time after months of worry about a bunch of stuff, I watched my cat chase a ball around the room for about 15 minutes - thats all it took for him - ate, played, and now snoozing!

I guess its a balance eh?

[shiney sue]

K you are so right better then any pill,lol for both of you.

Me I watched,my Grandson's vidio's he's so funny laughs,and then sleeps.

J. did you ever get all those camera books read,took a 12 yr. old to show me.

Bob got to LV is a little richer and sleepy.

While you look at other forums,introduce yourself,I met a bunch of new
people the other day,a book helped someone,and a thankyou made my
day... Thanks J i agree Hugs to all Sue

[MelodyL]

To me, laughter is the best medicine. If anyone wanted to laugh, I hoped that at least one of you tuned into American Idol last night.

There was a guy who sang GO DOWN MOSES. He made Randy Jackson laugh so hard he had to hide his face. I couldn't get to sleep I was laughing so hard all night long.

I just made Alan watch the tape I made and he fell off the couch.

I do hope SOMEONE on these boards saw this guy on AI last night.

Melody

[fanfaire]

Just posted about the value of laughter and some other stuff on another thread, but I'll repeat a bit here. My laughter therapy lately is recording stuff off of Comedy Central or the HBO Comedy station and then watching it while eating lunch. I particularly like female comics from the 1980's.

Moderation is the key when coping with more concurrent ailments that a person can remember without a list. Even though I've got so many medical problems that it's a full time job just taking care of them all, I still make time each day to learn something new, to do something that makes me feel useful (even if it's just giving the dog his medication), and to do something I enjoy. Having a "routine" appropriate to my abilities helps keep me going.

I'm always amazed at the strength of others confronting their own mortality. When my mom was dying of cancer, she still managed to find humor in situations others found mortifying, like suddenly being bald. She decided she looked like Yoda and would say things like, "you know, I never realized I had such good looking ears!"

I try very hard to maintain perspective. I know my life could be much less complicated health-wise, but I also know it could be so much worse than it is. Like I said on the other thread, do the best you can with whatever you have to work with.

fanfaire

[cyclelops]

Mel

Did that comedy video get to you??? That baggage claim one I sent....my gosh he is funny!!! If not check your email..

[MelodyL]

Hi Cyclelops

I can't open up any attachements in my Verizon Email. Alan, of course, did SOMETHING to the computer (YET AGAIN).

So I'm forwarding some mail to my hotmail account. I shall go there later and open it and respond to you.

Oh this morning, Alan taps me on the shoulder in bed when I got up and said "oh, by the way, you have to contact Verizon, we have no Firewall".

I just looked at him and said "what did you do to the computer THIS TIME". and said 'I didn't do anything, bu it says we have too many licenses".

I just sighed.

This man will either blow up my computer some day or give me a nervous breakdown.

He really is lethal around my poor Hewlett Packard.

mel

[cyclelops]

Well, see if you can open it....it is truly one of the best comedy routines I have ever seen....

[daniella]

I have been in therapy for more then 12 years and I am 29 so my whole adult life. As my psych's say I could write the book on therapy. The key is using the tools I have. I think for my eating disorder it took like 11 years but I know how to use healthy coping mechanisms to not fall into the disorder again. It is a daily battle but I feel I have control to make the right choices. The issue with pain/illness is that you don't have control on a lot. When I share my story of recovery to the people ill at the hospital for eating disorders and also share this issue I explain in their recovery they have a choice and it is fighting through the fears but with illness you don't. I guess for me the tools I can use with this issue is to stay in the moment. I go from a to z with what is going on in my body. That anxiety and fear doesn't help at all. Trying to focus on some positives in life and the progress in some ways I have made. To use my voice and reach out for support. For awhile I was ashamed of my pain and how this has taken over so I am so limited in life. Especially young people have no clue what this can be like when they are running around roller blading etc. Since I have pushed through the shame I felt and opened up it has helped me feel less lonely. It is though picking the right people to share this with though cause you know some people are idiots. I agree about laughter Melody and it always amazes me how people in pain can still have a spirit of fun in them. Even when I was super depressed and once in a psych ward I try to have a little fun. I used to say I know I am a nut but at least I admit it. I think that it can help in recovery to have a sense of humor and to hold to hope. We have such a nice family here of support. I am so thankful to have met all of you. You have taught me so much and when I am having a horrid day I think of many of you fighting through. Many hugs and happy/healthy wishes.

[daniella]

Another thought came to mind is what daily things people do to help with there pain and energy. For ex I have started taking epsom salt bath though not my favorite. Trying to dring 8-24 oz of water every hour for the 1st 8 hours awake the doc said.I am getting my exercise with all the potty breaks for sure. Working on limiting my sugar/startches this is hard and finding a supplemnt regimine. I have heard stretching and was told need to do it every hour for 5 seconds the area that hurts. I take my walk in the morning though need to work on increase in time. I wish I could find a hobby like craft but my patients is slim to none. I think being proactive can also help one feel more in control which as we know with pain and the many illnesses that pop up with this makes it so hard.This is all easier said then done.