lavenderlily13
03-14-2007, 05:42 PM
Hi there,
I'm new to the group, but unfortunatly not new to chronic pain. I am so lucky and blessed to have a supportive husband, two great kids and an understanding and compasionate doctor, and am able to obtain the meds I need in order to manage my chronic pain due to endometriosis. I know I'm so fortunate to have these things. I'm able to stay at home and sit with my heating pad and take my meds, but how do I make peace with what I thought my life would be like, and what it was before this beast took over my life??? How do you cope with the emotions? Any responses are appreciated.
thanks,
~lily:wave:
I'm new to the group, but unfortunatly not new to chronic pain. I am so lucky and blessed to have a supportive husband, two great kids and an understanding and compasionate doctor, and am able to obtain the meds I need in order to manage my chronic pain due to endometriosis. I know I'm so fortunate to have these things. I'm able to stay at home and sit with my heating pad and take my meds, but how do I make peace with what I thought my life would be like, and what it was before this beast took over my life??? How do you cope with the emotions? Any responses are appreciated.
thanks,
~lily:wave:
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Fabrashamx
03-14-2007, 06:50 PM
Hi Lilly, and welcome! I think everyone has their own way of coping, but the biggest three for me are faith, family, and humor. I think spirituality is much more important than religion, And a personal thing that each person must come to in their own way, and I certainly do not think my way is the only way, I try to listen and learn everyday and I hope I can do that all my life.
I also have a very strong marriage, my husband is my best friend, we've been together for 26 years and the rule is only one of us gets to be bonkers at a time, this is my week, lol! My sons are 22 and 19 and both working and in college, but they still live at home and are wonderful people who I enjoy spending time with, they pitch in and help with a lot of stuff around the house, and although they are often off with girl friends and friends, they always call and see if I need anything when theyre out. I am close to my parents, and have several friends that are like sisters to me, that are always there to lend an ear or a shoulder to cry on.
I have never thought it was good to take yourself too seriously, so I can usually see humor in even some pretty grim situations, and I hope I will always be able to laugh at myself and my sometimes spectacular stupidity, lol
(Looking all over for my sunglasses when theyre on top of my head would be an example lol)
I dont know who said it, but there is a quote, 'Man plans, and God laughs', I think thats true for everyone, but it seems tailor made for CPers. This is not the life we planned or wanted, but if we try and remember its all about the journey and not the destination, I think we'll be okay. and sometimes a pity party is okay too, I'll be the one in the corner crying into my haggen-daas, lol.
Great post, I cant wait to see what others have to say on the subject.
Hugs, Fabby :wave:
I also have a very strong marriage, my husband is my best friend, we've been together for 26 years and the rule is only one of us gets to be bonkers at a time, this is my week, lol! My sons are 22 and 19 and both working and in college, but they still live at home and are wonderful people who I enjoy spending time with, they pitch in and help with a lot of stuff around the house, and although they are often off with girl friends and friends, they always call and see if I need anything when theyre out. I am close to my parents, and have several friends that are like sisters to me, that are always there to lend an ear or a shoulder to cry on.
I have never thought it was good to take yourself too seriously, so I can usually see humor in even some pretty grim situations, and I hope I will always be able to laugh at myself and my sometimes spectacular stupidity, lol
(Looking all over for my sunglasses when theyre on top of my head would be an example lol)
I dont know who said it, but there is a quote, 'Man plans, and God laughs', I think thats true for everyone, but it seems tailor made for CPers. This is not the life we planned or wanted, but if we try and remember its all about the journey and not the destination, I think we'll be okay. and sometimes a pity party is okay too, I'll be the one in the corner crying into my haggen-daas, lol.
Great post, I cant wait to see what others have to say on the subject.
Hugs, Fabby :wave:
rayefaye
03-14-2007, 09:05 PM
Hi lily:wave: for me I had to learn to deal with a lot of changes early in life. My life changed in a matter of seconds when I was 19, I'm 43 now. I had a bad car wreck and suffer some bad injuries that left permanent damage. I was going to college for Accounting and was doing real well but ended dropping out due to the damage I had suffered to my hands and my right arm( I'm right-handed). But that accident taught me a lot of things about life especially never take nothing for granted and money is everything. All the money in the world won't replace my arm and hands back to the way they were before. Especially my left hand where the turn signal with all the way through it and left a whole in my left hand. But I have always found a way through family and friends to laugh try to have a good time and just enjoy what you have. I was diagnosed with RSD(reflex sympathetic dystrophy) which involves the nerves and I suffered a lot of nerve damage in the wreck. The way I deal with it is simply find some kind of hobby that I can enjoy. I like to read and plant flowers in my yard during the spring and summer. I have two grown daughters who bring me a lot of joy and all their drama to go with it. I have a wonderful husband who helps me out because I'm limited to what I can do. My left arm is frozen where my left hand touches my shoulder and the only time I can stretch it out is to put my clothes on. But I just try to stay positive and enjoy the good things in life. I wish you well and hope you get over this little bump in the road soon.:)
lavenderlily13
03-14-2007, 10:46 PM
hey,
I guess I should really keep perspective and just be glad that I don't have to go through the same difficulties other posters have with getting meds. I'm so sorry this situation with us pain sufferers seems to get worse and worse as far as the restrictions on recieving pain meds from providers. I will count my blessings that my doctor found a way to keep treating me even with the pressure and scrutiny he has faced being one of the brave doctors who is still willing to prescrible narcotic pain meds to patients who truly need them.( I should probably not go into detail about how he was able to keep me from having to go back to a pain clinic like before, that was awful!!)
Also, I have a neighbor who is fighting for her life against cancer, and if I keep my focus on her, and others who are suffering, and not able to really get the treatment they need to feel better, maybe it will just take my mind off of my own problems. I just feel selfish because of how tired I am so much of the time, I don't feel like I can really be there for my daughter especially because I'm using all the energy I have in order to stay positive and fight the pain. If I let it, it just consumes me, even with the vicodin, it's always there, waiting for the middle of the night to slice me into pieces when I wake after my meds have worn off. No one can really understand what that is like if they haven't been there.
Anyway, thanks for listening, and good luck to those of you who are still trying to find ways to get the meds you need, I have been where you are, it sucks. Stay positive, and network, talk to others in your community, find out where they go, that's how I found my Doctor, he's a godsend.
take care,
~lily:wave:
I guess I should really keep perspective and just be glad that I don't have to go through the same difficulties other posters have with getting meds. I'm so sorry this situation with us pain sufferers seems to get worse and worse as far as the restrictions on recieving pain meds from providers. I will count my blessings that my doctor found a way to keep treating me even with the pressure and scrutiny he has faced being one of the brave doctors who is still willing to prescrible narcotic pain meds to patients who truly need them.( I should probably not go into detail about how he was able to keep me from having to go back to a pain clinic like before, that was awful!!)
Also, I have a neighbor who is fighting for her life against cancer, and if I keep my focus on her, and others who are suffering, and not able to really get the treatment they need to feel better, maybe it will just take my mind off of my own problems. I just feel selfish because of how tired I am so much of the time, I don't feel like I can really be there for my daughter especially because I'm using all the energy I have in order to stay positive and fight the pain. If I let it, it just consumes me, even with the vicodin, it's always there, waiting for the middle of the night to slice me into pieces when I wake after my meds have worn off. No one can really understand what that is like if they haven't been there.
Anyway, thanks for listening, and good luck to those of you who are still trying to find ways to get the meds you need, I have been where you are, it sucks. Stay positive, and network, talk to others in your community, find out where they go, that's how I found my Doctor, he's a godsend.
take care,
~lily:wave:
ibake&pray
03-15-2007, 11:08 AM
Welcome Lily,
I too am from Minnesota. I'm from Mpls. my hubby hails from St. Paul..try not to hold it against him..we don't! LOL.
How do i deal with the pain? Last month my surgeon told me that I will live with some degree of pain the rest of my life due to my back breaking when the got me out of bed after my fusion...long story. I have two choices...I can sit and feel sorry for myself-which is allowed, within limits and only on certain days of full moons colored purple...Or I can pick myself up, suck it up and make the best of what I have.
I am alive, I have our first new grandson that I can hold (but they won't let me carry,another issue), an adorable husband, two daugthers that I gained through marriage, two sons that managed to grow up into great human beings and bring us those daughters, three dogs, a fantastic oven for baking...and a warped sense of humor. I also have a pain managment doctor who borders on sainthood and who's only goal in life is to make me as pain free as possible.
You have two choices in life. You can see it from the bright side or from the gloom side. My mother who suffered from back troubles all her life used to say..there is no sense complaining. It doesn't take away the pain, it doesn't make me feel better and it doesn't make you feel better either.. there you go.
Life is what you make it.......make it good.
Jill
I too am from Minnesota. I'm from Mpls. my hubby hails from St. Paul..try not to hold it against him..we don't! LOL.
How do i deal with the pain? Last month my surgeon told me that I will live with some degree of pain the rest of my life due to my back breaking when the got me out of bed after my fusion...long story. I have two choices...I can sit and feel sorry for myself-which is allowed, within limits and only on certain days of full moons colored purple...Or I can pick myself up, suck it up and make the best of what I have.
I am alive, I have our first new grandson that I can hold (but they won't let me carry,another issue), an adorable husband, two daugthers that I gained through marriage, two sons that managed to grow up into great human beings and bring us those daughters, three dogs, a fantastic oven for baking...and a warped sense of humor. I also have a pain managment doctor who borders on sainthood and who's only goal in life is to make me as pain free as possible.
You have two choices in life. You can see it from the bright side or from the gloom side. My mother who suffered from back troubles all her life used to say..there is no sense complaining. It doesn't take away the pain, it doesn't make me feel better and it doesn't make you feel better either.. there you go.
Life is what you make it.......make it good.
Jill
onyxgates
03-15-2007, 04:09 PM
Great attitude regarding the back pain. No sense in complaining since it doesn't do anything to relieve the pain. That is what I try to practice. It's so funny because when I say I can't do something...my family asks why?!? I tell them because my back hurts. They reply...is it hurting you today? I want to then say...today and everyday. They tend to forget. That's okay except for when they get on my about being on pain medications.
lavenderlily13
03-15-2007, 11:04 PM
hey everyone,
thanks for making me feel welcome, and I could really relate to your respones, I try really hard to stay positive, and to not complain, but then it seems like the more you try and be tough, and fight through the pain, the more your family forgets and treats you like your fine, when your not. I don't want to wallow, and I don't want to feel like I'm being a big baby and not doing everything I can to live a normal life. But I would do a million things differently if I didn't have to cope with this (beast) constantly. I have to plan ahead when I'm going to drive, and I can't volunteer to do things too far ahead because I don't know if I will feel up to it, and I do way too much when I do feel good, and then suffer even more later... for god's sake, I used to teach aerobics, I was unstoppable, and now, I'm glad if I can walk the dog. Sorry, I guess I needed to vent, but that's why wer'e here, right?
thanks for listening,
~lily:wave:
thanks for making me feel welcome, and I could really relate to your respones, I try really hard to stay positive, and to not complain, but then it seems like the more you try and be tough, and fight through the pain, the more your family forgets and treats you like your fine, when your not. I don't want to wallow, and I don't want to feel like I'm being a big baby and not doing everything I can to live a normal life. But I would do a million things differently if I didn't have to cope with this (beast) constantly. I have to plan ahead when I'm going to drive, and I can't volunteer to do things too far ahead because I don't know if I will feel up to it, and I do way too much when I do feel good, and then suffer even more later... for god's sake, I used to teach aerobics, I was unstoppable, and now, I'm glad if I can walk the dog. Sorry, I guess I needed to vent, but that's why wer'e here, right?
thanks for listening,
~lily:wave:
sherry1
03-15-2007, 11:19 PM
Hi Lily
It took me along time to come to terms with a new way of life as i used to be avery active person.
I have woked out doors with horses for 25 yrs an to suddenly be confined to 4 walls was murder!!
For 9 months i literally lived in a recliner chair and only walked round my lounge.
I was getting so depressed an very emotional.
Literally one day i said 'right thats enough'!!
I carnt live like this!
So i got a job from home working on the phone and the computer.
An 2 yrs down the line eventhough my back isnt sorted and i am still in pain i have gone back to doing light duties with the horses.
I have had to change my way of thinking.
Try an keep a positive attitude and be thankful for what i can do.
It doesnt come easy.
Best wishes
It took me along time to come to terms with a new way of life as i used to be avery active person.
I have woked out doors with horses for 25 yrs an to suddenly be confined to 4 walls was murder!!
For 9 months i literally lived in a recliner chair and only walked round my lounge.
I was getting so depressed an very emotional.
Literally one day i said 'right thats enough'!!
I carnt live like this!
So i got a job from home working on the phone and the computer.
An 2 yrs down the line eventhough my back isnt sorted and i am still in pain i have gone back to doing light duties with the horses.
I have had to change my way of thinking.
Try an keep a positive attitude and be thankful for what i can do.
It doesnt come easy.
Best wishes
ibake&pray
03-16-2007, 03:05 PM
Lily,
Perhaps we should make color coded -oh-i-don't-know-what. May a quilt square? Our pain level could be tied to a color. In the am, or during the day, we put the color square or potholder that is the level of our pain in the same spot every day. That way we could train our family to look for the color to see how bad the pain is, and how far we can push mom today!
Sounds like a good idea to me.... and we laugh and then we laugh some more. it doens't alway keep the pain away, but it makes them wonder what we have been up to! ;) :wave:
Perhaps we should make color coded -oh-i-don't-know-what. May a quilt square? Our pain level could be tied to a color. In the am, or during the day, we put the color square or potholder that is the level of our pain in the same spot every day. That way we could train our family to look for the color to see how bad the pain is, and how far we can push mom today!
Sounds like a good idea to me.... and we laugh and then we laugh some more. it doens't alway keep the pain away, but it makes them wonder what we have been up to! ;) :wave:
trowftd3
03-17-2007, 03:08 AM
How do I cope....this board!
And the few friends I have who also have cp. You can't really understand until it happens to you. My hubby also has cp and is my bestest(yes, I said 'bestest') friend....that helps a lot!!
Onyxgates-funny that you said that about your family....today I mentioned to my mother-in-law that I was going to the pain clinic for an injection on Tues.
She asked what for, I told her my lung and she says,"Oh, is that bothering you again?" I had to answer....still...it's never not hurt in the last 4 years!!
How quickly they forget. We could complain every day but then we would be 'whiners'. I try to keep quiet unless it's a really bad day and then I just try to avoid everyone so I won't have to explain or complain.~Mush
And the few friends I have who also have cp. You can't really understand until it happens to you. My hubby also has cp and is my bestest(yes, I said 'bestest') friend....that helps a lot!!
Onyxgates-funny that you said that about your family....today I mentioned to my mother-in-law that I was going to the pain clinic for an injection on Tues.
She asked what for, I told her my lung and she says,"Oh, is that bothering you again?" I had to answer....still...it's never not hurt in the last 4 years!!
How quickly they forget. We could complain every day but then we would be 'whiners'. I try to keep quiet unless it's a really bad day and then I just try to avoid everyone so I won't have to explain or complain.~Mush
lavenderlily13
03-17-2007, 07:36 PM
ok, so it seems like a lot of you go to these go to pain clinics, and a as I mentioned before, I did not like the treatment I received when I went to one before I found my primary care doctor who would take care of me (prescribe me meds) without all of the restrictions and lack of humanity that I have found since I left the pain clinic over a year ago. Maybe my experience was uncommon, and I'm trying to understand all of this without offending anyone or any organization, but I just don't see the need for pain clinics, and the regulations and everything that go along with them. Is that where we will all end up eventually? I had an open mind going to my first appointment, really, but after my year long experience going there every month and having injections they deemed necessary and physical therapy they deemed necessary 3 times per week (which did not help at all, but drained my bank account plenty) I just have a hard time understaning the purpose behind all of it. I hope I don't get into trouble for saying this, but if anyone can explain, I want to understand ...? thanks
~lily:wave:
~lily:wave:
rayefaye
03-17-2007, 09:01 PM
Hi lily, I haven't yet been to a pain clinic, I've been seeing my primary care doctor which I feel is also doing a very fine job. It was my orginal primary care doctor who diagnosed me when I had several specialists who had no clue what was wrong. He has since closed his practice but the doctor taking his place has been a true godsend. He is very understanding and is willing to help in any way possible. He also helped with my disability and any time if feel like I really need to see him between appts., he works me in. There also some very kind nurses who work there and in general I just love the atmosphere there.
dani808
03-19-2007, 01:18 AM
I hear you on the pain management clinic issue. I work in law and have had to work with many doctors on this issue before having the unfortunate circumstance of having to experience it first hand and here is what I learned about it.
With pain management clinics, the reason they have all of these weekly therapy requirements, besides that they are trying to find alerternatives to narcotic therapy is to weed out the pain seekers from the legitamate pain suffers. Their opinion on it is that if you are willing to come in and jump through all the hoops, that you must really want the help. Also, if they are called in front of the "board", which happens a lot, they can show a good history of alternative attempts and are not just doling out meds. The good thing about a pain management clinic is they are more knowledgable about tolerance and can really work with you on that aspect of your medication schedules. The other good thing is, at least with me, for every 5 types of therepies they attempt (injections, deep tissue massage, acupuncture, PT, blocks,etc.) that hopefully you might find at least one things that actually works for you and you can just stick with that. For me, I found deep tissue massage and prolpo therapy was a huge help for me, and after a year of trying a lot of painful procedures and therapies, I was able to leave the pain clinic and have my osteopath pick up my meds and monitor me on my treatment because we had already tried everything. A pain clinic, in a sense, is really like boot camp. You are lead blindly into a barage of treatments that are uncomfortable but help you learn alot about yourself and your pain and allow you to find a couple of things you can take and apply to your day to day life as a stronger person. I really found that the pain clinic boot camp was a way to prove myself as a legitmate pain sufferer too ( isn't it sad they we have to do that?!) so wherever you go for treatment from there on out, the doctors will see that you are serious and pro-active about your care and you will be treated better for it. So if you can tough it out, I think that you will find that in the long run, at the very least, having the pain managment clinic attempts on your records, will distinguish you as a legitamate pain sufferer and you will be treated more humanely in the future. :)
With pain management clinics, the reason they have all of these weekly therapy requirements, besides that they are trying to find alerternatives to narcotic therapy is to weed out the pain seekers from the legitamate pain suffers. Their opinion on it is that if you are willing to come in and jump through all the hoops, that you must really want the help. Also, if they are called in front of the "board", which happens a lot, they can show a good history of alternative attempts and are not just doling out meds. The good thing about a pain management clinic is they are more knowledgable about tolerance and can really work with you on that aspect of your medication schedules. The other good thing is, at least with me, for every 5 types of therepies they attempt (injections, deep tissue massage, acupuncture, PT, blocks,etc.) that hopefully you might find at least one things that actually works for you and you can just stick with that. For me, I found deep tissue massage and prolpo therapy was a huge help for me, and after a year of trying a lot of painful procedures and therapies, I was able to leave the pain clinic and have my osteopath pick up my meds and monitor me on my treatment because we had already tried everything. A pain clinic, in a sense, is really like boot camp. You are lead blindly into a barage of treatments that are uncomfortable but help you learn alot about yourself and your pain and allow you to find a couple of things you can take and apply to your day to day life as a stronger person. I really found that the pain clinic boot camp was a way to prove myself as a legitmate pain sufferer too ( isn't it sad they we have to do that?!) so wherever you go for treatment from there on out, the doctors will see that you are serious and pro-active about your care and you will be treated better for it. So if you can tough it out, I think that you will find that in the long run, at the very least, having the pain managment clinic attempts on your records, will distinguish you as a legitamate pain sufferer and you will be treated more humanely in the future. :)
marie59
03-19-2007, 10:11 AM
i have to say thats the hardest thing for me is coping thank god i have a wonderful husband who is supportive and loving and wonderful and wonderful family.life is good .except for my unrelenting level 8 pain.some days just cry stay in bed .most days i force myself to funchion.this is what i have so i try to work with it.i find a place for it most of the time.but it is so so so hard.i hope you all can find a place for it god bless.love marie:angel:
marie59
03-19-2007, 10:19 AM
me again sorry i go to a pain center also my first time there was horible hated it but have to saynow i love love my doc. she is great .i also felt that i had to prove my pain was real that sucks.but thats just the way it is unfortunitly.she takes me serious and i no longer think im crazy.still trying to find the right meds but at least we are working towards some releif.i feel like my ruemy that ive been seeing for 11 yrs has giving up on me how sad might have to get a new one not looking forward to that.oh well take cre be again
lavenderlily13
03-20-2007, 11:48 AM
Thanks for the responses, I think I understand the whole process a lot better now, especially with your explaination dani. I guess I should be glad that I have 'graduated' from the pain clinic, and now am under the care of a private physician for my pain management. I still wonder though whether that will continue to be the case in the future if the regulations continue to have more restrictions put on them. Also, I still question the need for all of us to go through this 'bootcamp' process when we have a surgically proven diagnosis that is known to cause to severe pain and have done everything medically possible to manage and treat the condition. That just doesn't make sense or seem right to me. It's kind of like adding an insult to injury if you know what I mean. Ok, anyway, thanks for letting me vent about it, I will just try and be thankful that my negative experience is behind me (hopefully!) and continue to cope the best I can with the pain that I still live with everyday.....
take care everyone,
~lily:wave:
take care everyone,
~lily:wave:
madhatter
03-21-2007, 10:25 PM
Welcome lil! Myself,when i can,i come here.We all know exactly what you mean.
Its not just the pain,sometimes i get real down on myself.I think,man! I have to go through this the rest of my life!I used to work in a rehab for addicts and alch.
the saying goes,one day at a time.I know,easier said than done.Many people,family members don't understand,just because you had a good day today,doesn't mean tomorrow will be a good day .When i first got hurt[back injury] i was so depressed! I just cant do the things i used to do! Like going hiking with my daughter,water skiing,you know,i was the bread winner,but when i couldn't support my family like i was used to,i felt less of a man.Depression set in,friends stopped coming around because i couldn't do the things we used to do,i was,i guess boring.My girlfriend of 8 yrs left me,i was alone,and scared to death.On top of all that,you got the doctors to deal with.And,as we all know,it can be diffacult to find a doctor who is willing to treat the pain accordingly.Lilly,we go through a lot,and not just with the physical pain.But Lilly,we do it,we are very very strong people!To go through what we go through,every day,every night!
WE ARE THE STRONG,THE PROUD,WE ARE THE CHRONIC PAIN PEOPLE!!
Its not just the pain,sometimes i get real down on myself.I think,man! I have to go through this the rest of my life!I used to work in a rehab for addicts and alch.
the saying goes,one day at a time.I know,easier said than done.Many people,family members don't understand,just because you had a good day today,doesn't mean tomorrow will be a good day .When i first got hurt[back injury] i was so depressed! I just cant do the things i used to do! Like going hiking with my daughter,water skiing,you know,i was the bread winner,but when i couldn't support my family like i was used to,i felt less of a man.Depression set in,friends stopped coming around because i couldn't do the things we used to do,i was,i guess boring.My girlfriend of 8 yrs left me,i was alone,and scared to death.On top of all that,you got the doctors to deal with.And,as we all know,it can be diffacult to find a doctor who is willing to treat the pain accordingly.Lilly,we go through a lot,and not just with the physical pain.But Lilly,we do it,we are very very strong people!To go through what we go through,every day,every night!
WE ARE THE STRONG,THE PROUD,WE ARE THE CHRONIC PAIN PEOPLE!!
busted55
03-28-2007, 05:09 PM
THANK YOU!!! ibakeandpray. You and you'r mother are exactly right. You just made my day when I read this.
You have two choices in life. You can see it from the bright side or from the gloom side. My mother who suffered from back troubles all her life used to say..there is no sense complaining. It doesn't take away the pain, it doesn't make me feel better and it doesn't make you feel better either.. there you go.
Life is what you make it.......make it good.
Jill[/COLOR][/QUOTE]
You have two choices in life. You can see it from the bright side or from the gloom side. My mother who suffered from back troubles all her life used to say..there is no sense complaining. It doesn't take away the pain, it doesn't make me feel better and it doesn't make you feel better either.. there you go.
Life is what you make it.......make it good.
Jill[/COLOR][/QUOTE]
zoey1
03-29-2007, 12:29 PM
We all have good and bad moments, what we do with the good moments tends to color the bad moments. Use to be do all i had to do with good moments and then of course the bad moments lasted longer. It took a while but learned how to gage what i could do, pair down laundry vacuming outings.
Life is not what it use to be but it is still my life, much more home bound now .
Hubby and family helped bunches, from changing door knobs out, lever sink nobs, rope around frig, changing buying habits to easy open pouches lids , small pots small pans ( things i could easily lift carry) . He got me a roll laundry basket.
He got my pc chair huge canisters he found at the home improvment stores. We eventualy changed out floors to tile so the chair could more easily roll across them. The biggest thing he did was turn bedroom in to my haven. Which has all my toys centeraly located where i can get to them easily when i have to lay down. He also made it dark which helps too.
I went to two docs for my multi problems and eventualy rhumy refered me to my nurologist. The nurologist has been handeling my pain management and it has made my life bareable. I am very grateful for him and his care. I bring all my copies of labs from other docs, whatever tests they order he gets copies of and any surgieries or other things above the usual they all have to sign off on.
I feel as if i landed a team approach to my care and doing better because of it.
Don't foget your local areas of support as well. From united way, soical workers to programs that may be aviable in your area .....
Life is not what it use to be but it is still my life, much more home bound now .
Hubby and family helped bunches, from changing door knobs out, lever sink nobs, rope around frig, changing buying habits to easy open pouches lids , small pots small pans ( things i could easily lift carry) . He got me a roll laundry basket.
He got my pc chair huge canisters he found at the home improvment stores. We eventualy changed out floors to tile so the chair could more easily roll across them. The biggest thing he did was turn bedroom in to my haven. Which has all my toys centeraly located where i can get to them easily when i have to lay down. He also made it dark which helps too.
I went to two docs for my multi problems and eventualy rhumy refered me to my nurologist. The nurologist has been handeling my pain management and it has made my life bareable. I am very grateful for him and his care. I bring all my copies of labs from other docs, whatever tests they order he gets copies of and any surgieries or other things above the usual they all have to sign off on.
I feel as if i landed a team approach to my care and doing better because of it.
Don't foget your local areas of support as well. From united way, soical workers to programs that may be aviable in your area .....
tracer
03-30-2007, 03:11 AM
hi there.at first it was hard for me it was a total change in lifestyle.i had a little pitty party for a short spell but then i decided not to let this get me down i knew i wanted to be as active as possible so i worked with doctors to find a good pm doc and i try my best to keep a chin up.it always helps to look around and notice ppl who have it alot worse than me instead of dwelling on how bad i have it,there many ppl in alot worse condition than me and they push on i look to them for inspiration when im feeling down.its hard though i hurt all the time 7 days a week 24hrs aday my pain takes no holidays and it can really wear me down if i let it but i dont,although its a constant challenge with the pain the rules and the ignorant ppl who dont understand what being in pain constantly means but asssume to push thier idiotic ideas upon me,but long ago i made a choice to meet this head on i have never looked back,i go to work everyday with a grin on my face and im really in a better mood tham most ppl at work because i feel im lucky to still be able to work so while they hate being at work im sorta enjoying it myself:p