My Gp Is Going To Make Me Relapse Right Here In Day 6
Keep On Keepin' On....
Thread Starter
Join Date: Aug 2005
Location: Alberta
Posts: 41
My Gp Is Going To Make Me Relapse Right Here In Day 6
Of the husband-imposed house arrest...because yesterday she said that I will "continue to feel a bit off for likely about a month." (This was in response to hubby asking "How long is she going to feel this badly?" And I instantly felt far FAR worse upon hearing her answer.)
A month is a very very lengthy amount of time to feel this (insert expletive here...in fact,please insert several) bad!!!
This morning I have already found my eyes wandering lustfully over to the shed...I know my pills are in there from before when Kurt locked them up, and frankly, I think I can hear them singing to me. "Come on Michelle...we will make you feel better...." (All to the tune of Oh What a Beautiful Morning...go figure
)
I just don't know if I have the inner strength to face another 3 weeks or this...and in all actuality, because we are somewhat tapering down, likely longer than 3 more weeks. I want to sleep again in my lifetime, and my legs need to stop feeling so GD sore!! I don't know if I can handle this....
Michelle.
A month is a very very lengthy amount of time to feel this (insert expletive here...in fact,please insert several) bad!!!
This morning I have already found my eyes wandering lustfully over to the shed...I know my pills are in there from before when Kurt locked them up, and frankly, I think I can hear them singing to me. "Come on Michelle...we will make you feel better...." (All to the tune of Oh What a Beautiful Morning...go figure
)I just don't know if I have the inner strength to face another 3 weeks or this...and in all actuality, because we are somewhat tapering down, likely longer than 3 more weeks. I want to sleep again in my lifetime, and my legs need to stop feeling so GD sore!! I don't know if I can handle this....
Michelle.
Administrator
Join Date: Aug 2003
Location: Dancing in the Light
Posts: 61,473
Michelle,
Your GP cannot make you relapse. Only you can do that.
The consequences of starting to take the drugs again will be very difficult for you to deal with. It's always a choice Michelle. You are strong enough to get through this. You've come a long ways already - don't go back again.
Hang in there.
Love, Anna
Your GP cannot make you relapse. Only you can do that.
The consequences of starting to take the drugs again will be very difficult for you to deal with. It's always a choice Michelle. You are strong enough to get through this. You've come a long ways already - don't go back again.
Hang in there.
Love, Anna
Body,Mind & Soul in that order
Join Date: Apr 2005
Location: Royal Oak,MI
Posts: 84
Michelle,
I Too Am An Addict, The Methods You Are Refering To Never Worked For Me.. The Answer For Me Was Suboxone,have They Even Discussed This W/you. I Have Absolutely No Withdrawl Symptoms Whatsoever!!! It Is Truly A Miricle!
Pm If You'd Like,i Can Give You Some Phone#'s Of Addiction Doc's Who Prescribe This Wonder Drug!
I Too Am An Addict, The Methods You Are Refering To Never Worked For Me.. The Answer For Me Was Suboxone,have They Even Discussed This W/you. I Have Absolutely No Withdrawl Symptoms Whatsoever!!! It Is Truly A Miricle!
Pm If You'd Like,i Can Give You Some Phone#'s Of Addiction Doc's Who Prescribe This Wonder Drug!
Keep On Keepin' On....
Thread Starter
Join Date: Aug 2005
Location: Alberta
Posts: 41
Thank you all for your responses! It's been a really rough morning so far, but the little one is off to school, the other little one is with his Daddy having breakfast downstairs, and I'm up here biting my nails.
I opted to tell Kurt what was up this morning, so he's keeping a pretty close eye on me right now. While I was at it, I explained to him that because I do feel so completely horrid, I require his help in cleaning, cooking, and kid care. He was really, really good about it, and told me that I should have asked him sooner! (Grrrrrr...my sponser is right...I do need to learn about communication!)
I'm really having a hard time today thinking about going through this for so long...but I have to try to remember one day at a time. It's hard to do that when all you want to do is just end the (insert expletive here) pain.
My MS is really bad today too, and the muscle spasms are just killing me. Kurt said he may break down and have to give me something because it's so brutal at the moment. I am just so sick and tired of being so sick and tired.
On days like today, I wonder why. Why did I bother to try to get off these pain meds with this disease I have? How am I going to control the MS without the painkillers? What am I doing to myself here, and why??
Kurt, for all I b---- about him, is a God Send right now. He just came up stairs to give me more coffee and a non-narcotic anti-inflamatory, saw what I was writing and said: "It's okay baby. We'll beat this together...I love you." Stupid things like that make me feel better sometimes.
Thank God Kurtsy is home right now...I hate him sometimes, but that's more my disease (the addictism/alcoholism) than me. For the three years we've been married, and the 8 years we've been together/known each other, he's been so good to me. I remember last year, when he finished the tour and had to stay home to detox me...and most of that time I just lay in his arms and cried. That's what I want to do right now, as a matter of fact...just lay in his arms and cry.
Why is this so hard?? Even amidst all the love and support I have, this is just so hard. Please, someone tell me...someone remind me...this pain will end. Please someone tell me how much better they feel today even though they had to go through hell to get there....please someone tell me I won't always feel this sick. Please someone...
I opted to tell Kurt what was up this morning, so he's keeping a pretty close eye on me right now. While I was at it, I explained to him that because I do feel so completely horrid, I require his help in cleaning, cooking, and kid care. He was really, really good about it, and told me that I should have asked him sooner! (Grrrrrr...my sponser is right...I do need to learn about communication!)
I'm really having a hard time today thinking about going through this for so long...but I have to try to remember one day at a time. It's hard to do that when all you want to do is just end the (insert expletive here) pain.
My MS is really bad today too, and the muscle spasms are just killing me. Kurt said he may break down and have to give me something because it's so brutal at the moment. I am just so sick and tired of being so sick and tired.
On days like today, I wonder why. Why did I bother to try to get off these pain meds with this disease I have? How am I going to control the MS without the painkillers? What am I doing to myself here, and why??
Kurt, for all I b---- about him, is a God Send right now. He just came up stairs to give me more coffee and a non-narcotic anti-inflamatory, saw what I was writing and said: "It's okay baby. We'll beat this together...I love you." Stupid things like that make me feel better sometimes.
Thank God Kurtsy is home right now...I hate him sometimes, but that's more my disease (the addictism/alcoholism) than me. For the three years we've been married, and the 8 years we've been together/known each other, he's been so good to me. I remember last year, when he finished the tour and had to stay home to detox me...and most of that time I just lay in his arms and cried. That's what I want to do right now, as a matter of fact...just lay in his arms and cry.
Why is this so hard?? Even amidst all the love and support I have, this is just so hard. Please, someone tell me...someone remind me...this pain will end. Please someone tell me how much better they feel today even though they had to go through hell to get there....please someone tell me I won't always feel this sick. Please someone...
Belgian Sheepdog Adictee
Join Date: Apr 2004
Location: In Today
Posts: 6,101
Michelle, do you have Remitting-Relapsing MS or Primary Progressive MS??
With either one you might want to discuss with your neurologist types of medication that will relieve the pain. They are having some great success with some of the anti seizure drugs like Neurontin or Topamax.
Also you might ask about a pain reliever like Ultram, it has another name in Canada. It wont totally take away the pain but does put somewhat of a blanket on it to make it tolerable.
Hope this helps a bit.
If the cravings are great call your sponsor. Have hubby take you to a meeting. Stay here on line. PM me if you need to.
Keep us posted, WE DO CARE!!!!!!!
Love and (((((to all))))),
With either one you might want to discuss with your neurologist types of medication that will relieve the pain. They are having some great success with some of the anti seizure drugs like Neurontin or Topamax.
Also you might ask about a pain reliever like Ultram, it has another name in Canada. It wont totally take away the pain but does put somewhat of a blanket on it to make it tolerable.
Hope this helps a bit.
If the cravings are great call your sponsor. Have hubby take you to a meeting. Stay here on line. PM me if you need to.
Keep us posted, WE DO CARE!!!!!!!
Love and (((((to all))))),
You're never alone!!
Join Date: May 2003
Location: Wisconsin
Posts: 2,191
Hello Michelle,
Can you tell me what your MS is like?
My aunt has a very bad case of MS.. She also has some syndrome, can't remember the name right now, but she got it from having a "water head" when she was a baby, it has to do with her brain stem.
Anyway, she was diagnosed with MS about 20 years ago, or so.. It progressively got worse. She is now crippled, in a wheel chair, her legs do not works at all, they are stiff, her hands are somewhat crippled, she has a (please excuse me, but I do not know all the medical terms here, or I can't remember them right now) but she has a colostomy bag (poop), she has a cathader for urine. She is really in tough shape.
I do not tell you this to scare you, I believe MOST do not ever get this bad, although some do....
I am wondering if you have an addiction, or a dependance due to your MS? Is it that you need this med?
My aunt takes, oxycodone, she has a Morphine pump, she also had methadone (a small dose) and Neurontin. That may seem like alot of meds. but she is still interrible pain. We almost lost her last winter due to a kidney infection, a kidney problem isn't really that bad, but because she takes so many meds, and her pain is so high all the time, she didn't realize she had an infection, Oh yeah she also had a k. stone.
But due not realizing she had the infection, she developed 2 infections in her blood, because the infection went on so long..
I want you to know that I am NOT trying to give you an excuse to use, you know what you need, I don't know that much about you, and even if I did, it is only you who knows what kind of pain you have, and if you require those meds. My aunt works with a pain clinic..
She also suffers terribly from all over body spasms... They are bad.. You know that..
It's really sad because she still is in terrible pain, and cries EVERYDAY.. But her stupid doctors just don't seem to get it. They tell her things like, you rate your pain to high. Maybe you should see a Psychologist.. Once they went as far as to say " would you like us to take all of your pain meds away"? Because she was complaining about her pain.. They are really terrible people that I would like to get my hands on. Her husband who is a high class wine-o, drunk, will not allow her to change pain clinics.. He's a whole other story..
So you see, it is really not a good situation. She is a wonderful, person, who would give you the shirtoff her back. He husband is extremely inttelligent, he is a millionaire. He thinks he is much better than everyone else, and I believe that contributes to his alcoholism. But he is a smart man. To smart for his own good.. But at least due to the fact that they have so much money, she does have the opportunity to recieve help that others do not.. So that is good..
Well I just wanted to share this story with you. I just wondered if you see a pian clinic doctor? If your MS is a bad case? Like hers? She does require all those meds. I think I read that you were watching a TV program on addiction or something and your husband took your meds away, and said you shouldn't be taking the oxycontin?? I am sorry if I have things wrong here, and I don't know what you think or your doctor, I only know that my aunt is in great need of her meds. There are people out there that do suffer pain from a disease due to doctors that fear they can become addicted, even when they need the meds.. ( I do know there are other docs that hand it out like candy, but there are the opposite to) .
I do not remember what you said about whether you were actually abusing the pills or not. I just wanted to say that there really are people with MS that require the pain killers. Maybe your not one, I don't know.
I read some where that the number of people that have MS, that get a real bad case, like my aunt, is a low number, it can be debilitating, but it can also be a disease that is one that a person can live with and not be so terribly affected.. I hope you are one of those.
Well, just wanted to share this story with you.. I hope it is ok with you that I did..
Love, Becky
Can you tell me what your MS is like?
My aunt has a very bad case of MS.. She also has some syndrome, can't remember the name right now, but she got it from having a "water head" when she was a baby, it has to do with her brain stem.
Anyway, she was diagnosed with MS about 20 years ago, or so.. It progressively got worse. She is now crippled, in a wheel chair, her legs do not works at all, they are stiff, her hands are somewhat crippled, she has a (please excuse me, but I do not know all the medical terms here, or I can't remember them right now) but she has a colostomy bag (poop), she has a cathader for urine. She is really in tough shape.
I do not tell you this to scare you, I believe MOST do not ever get this bad, although some do....
I am wondering if you have an addiction, or a dependance due to your MS? Is it that you need this med?
My aunt takes, oxycodone, she has a Morphine pump, she also had methadone (a small dose) and Neurontin. That may seem like alot of meds. but she is still interrible pain. We almost lost her last winter due to a kidney infection, a kidney problem isn't really that bad, but because she takes so many meds, and her pain is so high all the time, she didn't realize she had an infection, Oh yeah she also had a k. stone.
But due not realizing she had the infection, she developed 2 infections in her blood, because the infection went on so long..
I want you to know that I am NOT trying to give you an excuse to use, you know what you need, I don't know that much about you, and even if I did, it is only you who knows what kind of pain you have, and if you require those meds. My aunt works with a pain clinic..
She also suffers terribly from all over body spasms... They are bad.. You know that..
It's really sad because she still is in terrible pain, and cries EVERYDAY.. But her stupid doctors just don't seem to get it. They tell her things like, you rate your pain to high. Maybe you should see a Psychologist.. Once they went as far as to say " would you like us to take all of your pain meds away"? Because she was complaining about her pain.. They are really terrible people that I would like to get my hands on. Her husband who is a high class wine-o, drunk, will not allow her to change pain clinics.. He's a whole other story..
So you see, it is really not a good situation. She is a wonderful, person, who would give you the shirtoff her back. He husband is extremely inttelligent, he is a millionaire. He thinks he is much better than everyone else, and I believe that contributes to his alcoholism. But he is a smart man. To smart for his own good.. But at least due to the fact that they have so much money, she does have the opportunity to recieve help that others do not.. So that is good..
Well I just wanted to share this story with you. I just wondered if you see a pian clinic doctor? If your MS is a bad case? Like hers? She does require all those meds. I think I read that you were watching a TV program on addiction or something and your husband took your meds away, and said you shouldn't be taking the oxycontin?? I am sorry if I have things wrong here, and I don't know what you think or your doctor, I only know that my aunt is in great need of her meds. There are people out there that do suffer pain from a disease due to doctors that fear they can become addicted, even when they need the meds.. ( I do know there are other docs that hand it out like candy, but there are the opposite to) .
I do not remember what you said about whether you were actually abusing the pills or not. I just wanted to say that there really are people with MS that require the pain killers. Maybe your not one, I don't know.
I read some where that the number of people that have MS, that get a real bad case, like my aunt, is a low number, it can be debilitating, but it can also be a disease that is one that a person can live with and not be so terribly affected.. I hope you are one of those.
Well, just wanted to share this story with you.. I hope it is ok with you that I did..
Love, Becky
Member
Join Date: Aug 2005
Location: albuquerque New Mexico
Posts: 13
Better tonight!!!
(((Michelle)))
I didn't have time to realize you were on this thread too!
This is about my 6th day on a lower dose, and it has been fairly hellish. Also, I have the muscle disease and lupus- I have symptoms very similar to MS- and the cause is "autoimmune." I think that, at times, I have had every single thought you are having!!!
First, some folks gave me a free -ride because of the killer illnesses I've had (+fractures and osteoporosis). Others just felt I was just a junky. It has been rare to be treated with dignity... The "what addicts do thread" may help some people, but on the whole, with the HELL I have been through with illness- and still go through- I can't stand stuff like that...
I finally saw your hubby's post where he said he was affraid because you do not eat in the hospital! I do remember that you said your doc was worried about your weight... could it be that she agrees that you could do better at home for that reason?
Well, I didn't expect it- but I feel NORMAL!!!!!!! tonight. I guess I'm getting used to the new dose. I'll hang on here (boy was it rough resisting temptation earlier when hubby accidently left an oxy bottle out- but I am SO GLAD I did)
BTW- beware of Ultram- it too is very addictive- I used to take it! Some people say not- but I was on it.
God Bless, sister-
GS
PS- I expect a lot of pain from the disease in the morning + stiffness. Is your MS most active in the morning? My legs get very painful, cold and stiff- and I basically feel like I got hit by a truck... I may need some maintanace dose- just not one this high- or it will be a disaster at some point.
I didn't have time to realize you were on this thread too!
This is about my 6th day on a lower dose, and it has been fairly hellish. Also, I have the muscle disease and lupus- I have symptoms very similar to MS- and the cause is "autoimmune." I think that, at times, I have had every single thought you are having!!!
First, some folks gave me a free -ride because of the killer illnesses I've had (+fractures and osteoporosis). Others just felt I was just a junky. It has been rare to be treated with dignity... The "what addicts do thread" may help some people, but on the whole, with the HELL I have been through with illness- and still go through- I can't stand stuff like that...
I finally saw your hubby's post where he said he was affraid because you do not eat in the hospital! I do remember that you said your doc was worried about your weight... could it be that she agrees that you could do better at home for that reason?
Well, I didn't expect it- but I feel NORMAL!!!!!!! tonight. I guess I'm getting used to the new dose. I'll hang on here (boy was it rough resisting temptation earlier when hubby accidently left an oxy bottle out- but I am SO GLAD I did)
BTW- beware of Ultram- it too is very addictive- I used to take it! Some people say not- but I was on it.
God Bless, sister-
GS
PS- I expect a lot of pain from the disease in the morning + stiffness. Is your MS most active in the morning? My legs get very painful, cold and stiff- and I basically feel like I got hit by a truck... I may need some maintanace dose- just not one this high- or it will be a disaster at some point.
Keep On Keepin' On....
Thread Starter
Join Date: Aug 2005
Location: Alberta
Posts: 41
Hi all,
Day 7 here, and still hanging on somehow.... My MS came up in our lives following the conception of our first (my only conceived) child; our little girl and my little angel. My son, Gabe, is actually a stepson from a previous relationship in Kurt's life, so I didn't have to carry that one, even though I get to raise and love him! When I was first diagnosed, we went through a really difficult period of time, Kurt and I...because we sort of went "Oh my GOD!! WHAT IS GOING TO HAPPEN NOW??" Especially with my husband having a career that requires he travel quite a bit...
But nothing much happened that year...I had the little one, and Kurt and I broke up and got back together, and still things were pretty much the same physically. It was after Kurt had moved in with me for good, about three years ago, that my health really started to take a downhill turn. The things I used to be able to do with ease became more and more difficult to execute...and slowly it felt almost as though my body was burying me alive.
Today, I have painful muscle spasms that render me motionless and cramped for hours. I can no longer do things that require any degree of strength, and lately even picking up Gabe, who is now two, is something beyond my capabilities. He, of course does not understand why his "new Mommy" isn't picking him up and cuddling him any more. A couple of days ago, he broke my heart by climbing into my lap, looking at me with his beautiful dark eyes and saying, "ouchie mommy wuv me?" (I have gone from being "new Mommy" to "ouchie mommy" recently...which I'm not overly fond of...)
He is too young to understand that though all I want in the world is to pick him up and love him, I just physically can't. The stress of this is starting to wear on my husband badly, and I can see now how much my diseases (The MS, the anorexia and the addictions) have depleted him.
Kurt actually yelled at Gabe the other day, for climbing onto me when I was sleeping...and the poor child just sobbed. He was not understanding what he did that was so wrong, you know? He was like "I just want to love my mommy...why am I in trouble here?" (And of course he didn't say that, he's two...but I could see it in his little eyes...and it just devastated me. Look at what I am doing to my babies! All Three of THEM!! This truly is hell...this truly is torture, fire and brimstone...and God knows how I repent now all those moments I wasted and took for granted.)
My MS has gotten so much worse in this past year that it's positively staggering to me...and God if I had only known I would have made more of the time that passed so easily before this... At the beginning of 2005 I could walk on my own all the time, and though I occassionally got spasms and weakness, 80% of the time I felt pretty well normal. Today, it's seldom I can walk without the aid of my two canes, which I hate, and the spasms are daily, all the time, and so painful I want to just scream and yell and throw things because there is nothing else I can fricking do about it. "We admitted we were powerless..."
I have had trouble with my arms before, but this last week, it's been so much worse and I really do think it's the combination of the MS and the withdrawal from the oxycontin. Also, on the oxycontin; we discussed this yesterday with our doctor and she is very uncertain that taking me off of this drug is the correct measure as I absolutely am at a level that requires "agressive pain management tactics." We inquired about non-narcotic alternatives, however apparently these alternatives are not going to make me nearly as comfortable as the narcotics have and do.
I do know that if I have to have some sort of narcotic medication for pain relief, Kurt is going to have to monitor them for me somehow because simply put, I don't trust myself with my drugs of choice today, and RX narcotics have always been my drug of choice.
I feel very much like a failure at my own life here, and I feel like I'm just making things progressively worse every time I turn around. For example, the weight issue; as you all know, Kurt took a month off of work upon finding out that I had gone back to using Oxycontin's for pain relief. Well, yesterday I overheard him on the phone saying essentially that due to the weight concerns (I'm now 88 pounds, and if I lose any more I'm going to be admitted to the hospital...see fricking up again, here I go...I'm SUCH a Jackass!!) he's unlikely to return until mid January.
I feel like I have really let my husband and kids down by doing this, and I just don't know how to fix it really...which is just breaking my heart. Kurt is very good to me, and he goes out of his way to make sure I'm taken care of and loved always. Do you know that not once in the past three years have I gone to bed without hearing "I love you baby." ? When he's home, and not on the road with his career, I don't ever go to sleep without his arms around me, and when I wake up I always get kisses good morning, and always get told "I love you so much." or something equivilant to that. If he's on the road, he phones several times a day just to tell me how much he loves me, and to check up on how I'm doing. BUT...I don't have much to give back anymore, do I? This amazing man, and my amazing babies...and I can't even pick up the little one anymore...and my husband has to stop working to babysit his screw up of a wife...
Cooking is something I can still do...if I rest inbetween preparing things because my legs just won't stand up to long periods of weight bearing. We have to have a cleaning lady, because I can not push a vacuum or reach to dust, and recently (last week) Kurt started sending our laundry out to be done as well. BUT you know what? I was supposed to be home taking care of this house, that was our deal!! He has a really fantastically paying job and he loves it, so he and I decided I would run the house and he'd be the one to "bring home the bacon" so to speak.
Kurt has lived up to his end of this bargain in spades...and through some serious injuries that should have stopped him from working, he just carried on. No matter how badly his knees hurt or his back ached, he's always just gone out and done what he's had to do...even when I know it's nearly killed him to do it. Now I, on the other hand, have crumpled and can't seem to just carry on in spite of the pain. Kurt says it's not the same thing; sports injuries heal where MS won't and doesn't...but for me today, it doesn't FEEL any different.
It FEELS like I have let him down, and let this family down...that somehow I should be able to just do what he does;put on a smile and keep on...but I can't. I can't even wash my own hair...and as a result of how bad I am now, he's had to stop working and make me his full time job.!! Now it seems that's going to go on for a long while more than I originally thought. Kurt doesn't have all that many years left that he
will be able to perform and do what he does...and I'm stealing all this time from him instead of doing what I promised him I would do.
My children no longer have a mother that can sit and read them stories or make crafts or play outside, nor does my husband have a wife to take care of him and make him his suppers and love him. Instead, that shining person has been stolen and in her place, my family has received this empty shell of a human being that is incapable of
caring for herself, let alone them. Kurt says he loves me and he'd never leave me...I'm relieved...but I can't help but wonder why...
It's so hard to just keep on keeping on when you feel like you are taking everyone you love down with you.
Michelle.
Day 7 here, and still hanging on somehow....
My MS came up in our lives following the conception of our first (my only conceived) child; our little girl and my little angel. My son, Gabe, is actually a stepson from a previous relationship in Kurt's life, so I didn't have to carry that one, even though I get to raise and love him! When I was first diagnosed, we went through a really difficult period of time, Kurt and I...because we sort of went "Oh my GOD!! WHAT IS GOING TO HAPPEN NOW??" Especially with my husband having a career that requires he travel quite a bit...But nothing much happened that year...I had the little one, and Kurt and I broke up and got back together, and still things were pretty much the same physically. It was after Kurt had moved in with me for good, about three years ago, that my health really started to take a downhill turn. The things I used to be able to do with ease became more and more difficult to execute...and slowly it felt almost as though my body was burying me alive.
Today, I have painful muscle spasms that render me motionless and cramped for hours. I can no longer do things that require any degree of strength, and lately even picking up Gabe, who is now two, is something beyond my capabilities. He, of course does not understand why his "new Mommy" isn't picking him up and cuddling him any more. A couple of days ago, he broke my heart by climbing into my lap, looking at me with his beautiful dark eyes and saying, "ouchie mommy wuv me?" (I have gone from being "new Mommy" to "ouchie mommy" recently...which I'm not overly fond of...)
He is too young to understand that though all I want in the world is to pick him up and love him, I just physically can't. The stress of this is starting to wear on my husband badly, and I can see now how much my diseases (The MS, the anorexia and the addictions) have depleted him.
Kurt actually yelled at Gabe the other day, for climbing onto me when I was sleeping...and the poor child just sobbed. He was not understanding what he did that was so wrong, you know? He was like "I just want to love my mommy...why am I in trouble here?" (And of course he didn't say that, he's two...but I could see it in his little eyes...and it just devastated me. Look at what I am doing to my babies! All Three of THEM!! This truly is hell...this truly is torture, fire and brimstone...and God knows how I repent now all those moments I wasted and took for granted.)
My MS has gotten so much worse in this past year that it's positively staggering to me...and God if I had only known I would have made more of the time that passed so easily before this... At the beginning of 2005 I could walk on my own all the time, and though I occassionally got spasms and weakness, 80% of the time I felt pretty well normal. Today, it's seldom I can walk without the aid of my two canes, which I hate, and the spasms are daily, all the time, and so painful I want to just scream and yell and throw things because there is nothing else I can fricking do about it. "We admitted we were powerless..."
I have had trouble with my arms before, but this last week, it's been so much worse and I really do think it's the combination of the MS and the withdrawal from the oxycontin. Also, on the oxycontin; we discussed this yesterday with our doctor and she is very uncertain that taking me off of this drug is the correct measure as I absolutely am at a level that requires "agressive pain management tactics." We inquired about non-narcotic alternatives, however apparently these alternatives are not going to make me nearly as comfortable as the narcotics have and do.
I do know that if I have to have some sort of narcotic medication for pain relief, Kurt is going to have to monitor them for me somehow because simply put, I don't trust myself with my drugs of choice today, and RX narcotics have always been my drug of choice.
I feel very much like a failure at my own life here, and I feel like I'm just making things progressively worse every time I turn around. For example, the weight issue; as you all know, Kurt took a month off of work upon finding out that I had gone back to using Oxycontin's for pain relief. Well, yesterday I overheard him on the phone saying essentially that due to the weight concerns (I'm now 88 pounds, and if I lose any more I'm going to be admitted to the hospital...see fricking up again, here I go...I'm SUCH a Jackass!!) he's unlikely to return until mid January.
I feel like I have really let my husband and kids down by doing this, and I just don't know how to fix it really...which is just breaking my heart. Kurt is very good to me, and he goes out of his way to make sure I'm taken care of and loved always. Do you know that not once in the past three years have I gone to bed without hearing "I love you baby." ? When he's home, and not on the road with his career, I don't ever go to sleep without his arms around me, and when I wake up I always get kisses good morning, and always get told "I love you so much." or something equivilant to that. If he's on the road, he phones several times a day just to tell me how much he loves me, and to check up on how I'm doing. BUT...I don't have much to give back anymore, do I? This amazing man, and my amazing babies...and I can't even pick up the little one anymore...and my husband has to stop working to babysit his screw up of a wife...
Cooking is something I can still do...if I rest inbetween preparing things because my legs just won't stand up to long periods of weight bearing. We have to have a cleaning lady, because I can not push a vacuum or reach to dust, and recently (last week) Kurt started sending our laundry out to be done as well. BUT you know what? I was supposed to be home taking care of this house, that was our deal!! He has a really fantastically paying job and he loves it, so he and I decided I would run the house and he'd be the one to "bring home the bacon" so to speak.
Kurt has lived up to his end of this bargain in spades...and through some serious injuries that should have stopped him from working, he just carried on. No matter how badly his knees hurt or his back ached, he's always just gone out and done what he's had to do...even when I know it's nearly killed him to do it. Now I, on the other hand, have crumpled and can't seem to just carry on in spite of the pain. Kurt says it's not the same thing; sports injuries heal where MS won't and doesn't...but for me today, it doesn't FEEL any different.
It FEELS like I have let him down, and let this family down...that somehow I should be able to just do what he does;put on a smile and keep on...but I can't. I can't even wash my own hair...and as a result of how bad I am now, he's had to stop working and make me his full time job.!! Now it seems that's going to go on for a long while more than I originally thought. Kurt doesn't have all that many years left that he
will be able to perform and do what he does...and I'm stealing all this time from him instead of doing what I promised him I would do.
My children no longer have a mother that can sit and read them stories or make crafts or play outside, nor does my husband have a wife to take care of him and make him his suppers and love him. Instead, that shining person has been stolen and in her place, my family has received this empty shell of a human being that is incapable of
caring for herself, let alone them. Kurt says he loves me and he'd never leave me...I'm relieved...but I can't help but wonder why...
It's so hard to just keep on keeping on when you feel like you are taking everyone you love down with you.
Michelle.
Keep On Keepin' On....
Thread Starter
Join Date: Aug 2005
Location: Alberta
Posts: 41
Maybe I'm just scared that what happened four years ago, when he reconciled with his first wife (still technically his wife, we are common law) for a little over a year, will happen again. (That is where Gabe came from...) She is working, capable and can still run a house and take care of herself. Why would he want to stay with me when he can be with someone like that? I'm really in an insecure nasty little place today...I can't wait until my sponser gets home from work...gosh...I'm relying on everyone these days, aren't I? Nice...I can't even think without someone helping me anymore...
Member
Join Date: Aug 2005
Location: albuquerque New Mexico
Posts: 13
Michelle,
I, too, got my illness shortly after the birth of my one- and only child. I had wanted more- but then got dermatomyositis- this rare muscular dystrophy that is related to lupus (which I also got a few years later). Right away I was told that without the proper treatment 50- 75% of people with DM die... and I had a new baby.... I started to worry that I would not live to hear him call me "Mommy."
I have been through some hellish treatments- but it is ten years later, and I did get to hear "mommy"- and then"MOM"- sometimes more than I can even deal with- but I have been so blessed that both me and my husband (who later got cancer) have been spared...
When I was getting treatment for lupus/myositis in the hospital pherisis room, I met a number of people with MS... If you are not familiar with plasmapheresis or IVIG treatments for MS- you really REALLY might want to look into it... I personally chatted with one lady who can now exercise- but who used to be confined to a wheelchair! These are medically -proven treatments for lupus and DM, but they CAN sometimes work for MS- though it may be an "off label" use.... Both of our illnesses are "autoimmune diseases"- meaning that your immune system is attacking the myalyn (sp?) sheaths around your nerves- and ,like me- you probably have unusual protiens in your spinal fluid...
I am surprised they have not tried prednisone (you can ask your doc)- as it can relieve inflamation AND almost ALWAYS makes people feel better at first +adds weight to everyone...
I'm only saying these are things you might want to take to a specialist- a neurologist- you know?
God Bless
GS
I, too, got my illness shortly after the birth of my one- and only child. I had wanted more- but then got dermatomyositis- this rare muscular dystrophy that is related to lupus (which I also got a few years later). Right away I was told that without the proper treatment 50- 75% of people with DM die... and I had a new baby.... I started to worry that I would not live to hear him call me "Mommy."
I have been through some hellish treatments- but it is ten years later, and I did get to hear "mommy"- and then"MOM"- sometimes more than I can even deal with- but I have been so blessed that both me and my husband (who later got cancer) have been spared...
When I was getting treatment for lupus/myositis in the hospital pherisis room, I met a number of people with MS... If you are not familiar with plasmapheresis or IVIG treatments for MS- you really REALLY might want to look into it... I personally chatted with one lady who can now exercise- but who used to be confined to a wheelchair! These are medically -proven treatments for lupus and DM, but they CAN sometimes work for MS- though it may be an "off label" use.... Both of our illnesses are "autoimmune diseases"- meaning that your immune system is attacking the myalyn (sp?) sheaths around your nerves- and ,like me- you probably have unusual protiens in your spinal fluid...
I am surprised they have not tried prednisone (you can ask your doc)- as it can relieve inflamation AND almost ALWAYS makes people feel better at first +adds weight to everyone...
I'm only saying these are things you might want to take to a specialist- a neurologist- you know?
God Bless
GS
Reach Out and Touch Faith
Join Date: Jul 2005
Location: On a Sailboat
Posts: 3,871
Michelle, I'm so sorry to hear about all of this. I also have MS (relapsing-remitting). I haved used a couple other drugs for the muscle spasms (including topomax). Narcotics never worked for me. At one point I was in a wheelchair.
Now I'm back, up and walking but I can tell a flare is coming up. Yesterday my hand went numb and last night I nearly fell down stairs.
My GP knows of this condition, and has agreed to give me narcotics in small amounts so that he knows exactly how much I take when I do fully relapse.
I wish I could give you more advice but I am thinking of you.
Now I'm back, up and walking but I can tell a flare is coming up. Yesterday my hand went numb and last night I nearly fell down stairs.
My GP knows of this condition, and has agreed to give me narcotics in small amounts so that he knows exactly how much I take when I do fully relapse.
I wish I could give you more advice but I am thinking of you.
Member
Join Date: Nov 2002
Location: Bristol TN/VA
Posts: 12,431
Michelle, I am so sorry for your pain. Your husband didn't marry you for what you could do for him, he married you because he loves you and wants to live his life and spend his future with you. Please don't be so hard on yourself!!! The physical pain is bad enough, you don't need the mental misery!!!
From the other post, apparently there has been a misunderstanding. But that's okay.
And sometimes people do view things differently, we are all unique as snowflakes so that is to be expected. I could not & cannot understand posting "Is she going to die", I would be calling 911 if I had that concern. I have done that.
As a matter of fact I did that and that is why my hubby was in the hospital for a week.
And I have done that with my son when he did not want to go. I did not care if they were mad at me, it was more important to me that their lives and health were cared for. That's where I am coming from.
Also, DRs are not G*ds. If I feel like I am not healing with the one I am with, I seek out another.
I also know how that waiting period can be a torturous eternity. I suffer from severe depression and must take meds the rest of my life. Last time I went off them, I was so sick, it seems in me to be a progressive disease, that the waiting 8 wks for them to kick in was total total hell. I will never go off my meds again, I am afraid I don't have another comeback in me.
You have lots of good advice here from people who know your condition.
I wish you all the best, send hugs, and hope you can find moments of peace.
live
From the other post, apparently there has been a misunderstanding. But that's okay.
And sometimes people do view things differently, we are all unique as snowflakes so that is to be expected. I could not & cannot understand posting "Is she going to die", I would be calling 911 if I had that concern. I have done that.
As a matter of fact I did that and that is why my hubby was in the hospital for a week.
And I have done that with my son when he did not want to go. I did not care if they were mad at me, it was more important to me that their lives and health were cared for. That's where I am coming from.
Also, DRs are not G*ds. If I feel like I am not healing with the one I am with, I seek out another.
I also know how that waiting period can be a torturous eternity. I suffer from severe depression and must take meds the rest of my life. Last time I went off them, I was so sick, it seems in me to be a progressive disease, that the waiting 8 wks for them to kick in was total total hell. I will never go off my meds again, I am afraid I don't have another comeback in me.
You have lots of good advice here from people who know your condition.
I wish you all the best, send hugs, and hope you can find moments of peace.
live
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