reminder about my pain generator

[Mark N]

I have accepted my pain and the need to take the meds that I do. I also accept that without a miracle I really won't get better. Over time I get to the point that it just seems like generalized pain until a day like today. Today my thoracic spine reminded me in no uncertain terms that it is the cause of most of my pain. I just find it odd that I can forget that most days and just see my pain as having no real cause. I guess the reason is that as bad as my last thoracic surgery was I don't even want to think that I could need another one some day. The pain I can accept and not blame for the loss of my former life. The thoracic pain makes it very real and reminds me that surgery isn't out of the question and even with another fusion I could still be in pain and unable to work. So far I don't have enough of the neurological losses to justify thoracic surgery but I know I am not ready to go that route again. I also know that if it gets worse and my thoracic spine is responsible for the decline then I will get to the point of surgery again. It is too bad because by becoming disabled I had decided that surgeries weren't necessary any more.

I can't say that I really want advice or even what I would want advice on. It is just nice to be able to come here and express concerns I have without stressing out my family every time.

[BrokenBladder]

Mark I can't really give you advice as my disabilities are different from yours and besides you're not really looking for that anyway. However I do understand how you feel. I hate talking about increased pain, condtion worsening with my family because it does stress them out. I know you have a son and I'm sure he always wants to know how you're feeling. So do my 2 boys. Its hard to be honest with them because I don't want them to worry. My DH works so hard and he can always tell when things are worse than usual, but I still hate to make that admission to him.
I too have been told that putting a tens unit in my butt cheek(sorry for the candid statement)could possibly help my bladder. However it will do nothing for my kidneys for my FM. So I don't see the point. I can't work now and chances are I never will again.
I do have surgery once per year so that my urologist can see just how many more ulcers have formed on the inside of my bladder wall, but you know I'm about done with that too. There is no cure so why put myself, and my family through that, every year.
This is a wonderful place to say things that we need to get out, but want to save our families from hearing it. Thanks for starting this thread, it seems like I even needed to get a couple of things off my chest!!

[Mark N]

Lisa, I understand what you are saying and it is too bad that many people cn't see what we go through. Just like SSDI has denied me for 2.5 years but if they had to walk in our shoes for just a few day they would have no doubt that we are truly disabled. They would also learn how much we have lost in our lives and how many things we love to do that are gone for us. The people around me see me do a few things and wonder why I try to do them but don't know I just want to be a person again. I stay positive and keep my hopes up for I know I don't know what tomorrow will bring. I am frustrated with politics [I love it though] but I know most of the problem is that many of them are the 60's people that always thought they knew what was best for all of us and still think they know what is best. They put programs in that fail [some of them do succeed] but don't look why they fail and turn around and put another program in place without following the good programs. Too much is built around people that want handouts. I would prefer to only have my LTD than getting SSDI but that isn't the path we have to follow.

I hope that all us have hope and that some time in the next few years a medical miracle comes around for us but if not, we will continue to push on.

[BrokenBladder]

Mark it took me 3 years to get my SSD. My specialist and doctors all said I couldn't work, but SSA kept saying no. I lost my marriage during that time, even though I know it was for the best, it was another part of my life gone due to illness.
My DH now often says to me, "why do you insist on pushing yourself when you know you will be down for the next 3 days?" I get angry at him and tell him to leave me be but the truth is I need to feel alive and like I can actually DO something!! I hate relying on meds to "function" but I know what I would be if I didn't take them.
Mark I pray for that miracle that will cure us all. If it doesn't come then yes we will push on and try to live life to the fullest. One thing that I have learned the hard way.......take nothing for granted. These diseases have shown me one thing, life is shorter than we know so enjoy every delicious second that we can.
P.S. Yes our society is more than happy to give out hand outs, but when it comes to those of us who really need it, we have to fight to the end. My ex husband was being nasty the other day and said to me, "well it must be nice that while I still work you live off the government!" Nice huh? Well I told him, as I cried of course, that I'm glad he still has his health and can work and that I would trade places with him anyday!!! I had a great business and worked my a$$ off to get it, now I'm reduced to poverty, but at least I'm happy and I've learned alot. Sorry for the long rant!!

[Kathi49]

Lisa,

I agree...

Take nothing for granted and life IS too short!

Okay, now, my situation was a little different. I OPTED to retire early because there was a "Buyout" offered and we never knew when the next one would be offered. Most times they are few and far apart in years. Would I have liked to have been fully vested at age 55? Yep! But as I sat, year after year, doing IT work, my neck only worsened. Yes, everything was ergonomically correct as far as my work station was concerned. And, yes, my WONDERUL bosses offered part time work. However, had I accepted part time ALL of my benefits would have been cut in half. And that is not something I could allow or afford to happen. Besides I was in pain ALL the time. Not because of the first fusion; that one allowed me to work another two years. But the C5/C6 was bad at the same time. So, the pain continued.

I got tired, real tired of fighting the pain at every turn no matter how I tried to treat it. And when I came home from work, I was wiped out. That was NOT quality of life and going after the almighty dollar was not worth it anymore. I just thank God I had enough time in order to take the Buyout. It was a tough decision because I kept thinking I would get better but my husband said, "Just take it!"

I am glad I did. No, my pension is not super duper but when I ran the numbers another 7 years of working would have only given me an additional $300 a month. Yes, I know it adds up. But 7 more years of pain was NOT worth $300 a month. Anyway, I get by just fine as far as finances go. Am I bored? Nope, just in pain. But I try to find things I can do and enjoy doing and try to remain positive. It is hard to do at times and it seems sometimes ALL I do is go to appointments. But I am not as wiped out as I used to be and can enjoy time with friends and family. :) Because when it comes down to it family and friends is what is most important to me now. And it is the little things I have come to appreciate.

Oh, and for those people like your ex and my ex and others, they just don't get it. So, I simply tell them, "We'll talk more IF you ever have to go through this." I don't bother explaining anymore unless someone specifically asks me or is genuinely concerned.

[Mark N]

Lisa, sorry to hear that your ex said something that bad to you. I know you would much rather work and support him than not to be able to work any more. My middle brother [he was a bit of a bum] told me when I was home on leave from the Marine Corps "I pay for your income" in a nasty looking down at his nose at me but I pointed out that I paid more in taxes than he did so I was actually paying for my own income.

Kathi, I hope you didn't overdo the partying last night to celebrate the Colts win.

It was good to see Coach Dungy win and I really like his comment about it was nice to be the first African-American coach but to him and Coach Lovie it was more important to win as Christian men and doing it the way God wanted. Well Ladies, we can say we are Champions for a year until the Colts back it up next year or some other team wins it:D .

[juniee]

I have accepted my pain and the need to take the meds that I do. I also accept that without a miracle I really won't get better. Over time I get to the point that it just seems like generalized pain until a day like today. Today my thoracic spine reminded me in no uncertain terms that it is the cause of most of my pain. I just find it odd that I can forget that most days and just see my pain as having no real cause. I guess the reason is that as bad as my last thoracic surgery was I don't even want to think that I could need another one some day. The pain I can accept and not blame for the loss of my former life. The thoracic pain makes it very real and reminds me that surgery isn't out of the question and even with another fusion I could still be in pain and unable to work. So far I don't have enough of the neurological losses to justify thoracic surgery but I know I am not ready to go that route again. I also know that if it gets worse and my thoracic spine is responsible for the decline then I will get to the point of surgery again. It is too bad because by becoming disabled I had decided that surgeries weren't necessary any more.

I can't say that I really want advice or even what I would want advice on. It is just nice to be able to come here and express concerns I have without stressing out my family every time.

be sjfbhjbfhzwmdnhehjhejhjbhejwwwwwwwwwwww

[juniee]

be a *******

[Kathi49]

Mark,

I didn't party in the sense that most people party LOL! But I couldn't tear myself away from that game! Of course I had to lay down, then sit down, then stand up just to adjust to the aches and pains.

But I agree with you about what Dungy said. It was really nice. There were some other things that were said about him post game. I never knew that he never raises his voice nor cusses. So, there you have it. You can get something done without cracking the whip. :) After having lived with Bobby Knight's antics all those past years (sorry, can't stand him), it was refreshing to hear them speak so highly of Dungy.

[curiousforever]

muawhahahaha I can't get SSD cause no one will say anything about anything wrong with me. Note to self - call clinic to see if anything on balboa came thru.

[Mark N]

I was hoping that the thoracic problems would settle down today but they seem to be worse. I sure hope the next few days get better as I don't need to be pursuing thoracic problems with my doctors. I have had too many MRIs and other test to run through more but if that is what it takes then I guess I will go through the process again if necessary.

[BrokenBladder]

be a *******


Sorry I didn't quite understand what you're saying here, can you clarify?

[BrokenBladder]

muawhahahaha I can't get SSD cause no one will say anything about anything wrong with me. Note to self - call clinic to see if anything on balboa came thru.


Curiousforever I'm sorry that you're having so many problems gettings SSD. I don't really understand what balboa means, but you should never give up on getting a diagnoses with a doctor who will back you. I understand that in some cases that's easier said than done.
Out of curiousity, what is balboa?:confused:

[BrokenBladder]

I was hoping that the thoracic problems would settle down today but they seem to be worse. I sure hope the next few days get better as I don't need to be pursuing thoracic problems with my doctors. I have had too many MRIs and other test to run through more but if that is what it takes then I guess I will go through the process again if necessary.


Mark I really hope your pain levels come down. I truly understand how crazy it can make you to have to run around and do tests all of the time.:( I'm like you though I figure if I have to then I will, but man does it ever get old!! Check in later and let us know how you're feeling!!

[hoops2u]

Hi Ya Mark!

Yes this is a good place to just tell it like it is, for sure. I really don't like whining to my Hunny Bunny all the time. I mean, I am sure I wouldn't want to come home from a hard days work and hear nothing but how awful the love of my life feels, day after day. So, when I am having a bad one, I say it here.

And, AND, I don't know where you live, but the weather surely does affect my bones. My pain level goes way up whenever the weather changes.

There are a lot of wonderful people here ready to hand out a hug wherever and whenever one is needed. Here's a really big one for you, Mark, ready?

(((:) :D ;) :p :rolleyes: :) )))

Blessing to you my dear,
hoops

[Mark N]

hoops2U, thanks for the hug and the kind words. It isn't good to always say how bad we are doing to our spouses because like you say "it isn't something we want to do to them after a a day of work." I haven't noticed a change based on weather. I know people that do feel increased pain when the weather changes but it doesn't seem to have that effect on me. It is cold here along the Ohio River and sounds like it will stay that way for the week. I hope it gets warmer again next week. Thanks again:)

[BrokenBladder]

Mark the strange thing is I thought when I went to Tennessee in December to visit my brother and sister that the cold weather would kill me, but it didn't. I actually had a little more energy!! I live in Florida so we typically always have warm weather and I always though I was living in the best climate, I guess not. Of course, everyone is different but it really made me stop and think. The real test will be the end of this month because my sister is getting married and I will need to go back up there and it will be colder. I'm really going to pay close attention to everything I feel.
I hope you're doing better today, please let us know.

[Mark N]

I have only been up for an hour but so far it seems like my thoracic spine is settling down. Maybe it will behave itself for a while. Lisa, it would be interesting if you had better results with cooler weather but I don't think cold weather would help as much. Visiting will still be hard to determine if it helps you because it could be the excitement of seeing your sister or just the excitement of getting out of the rut at home. I know I do better when we go some where but I pay for it the next few days. The difference in surroundings just helps out and it is why I try to get out and visit people in the neighborhood whenever I can.