how has CP changed your thinking? [Archive]

Mark N

03-25-2007, 03:19 AM

BrokenBladder

03-25-2007, 09:54 AM

I want to here how you have been impacted by CP and yur meds and how you handle it. How do you get past all the dreams that are gone and how do you reestablish new dreams?

Wow this is a tall order for first thing in the morning Mark!!
CP has impacted all of my life and the lives of those around me. I've always been a positive person whom believed that with enough hard work and God by my side, I could accomplish anything. Now that I have CP I have come to realize that hard work isn't something I can do, but God is still by my side, so armed with that solid belief, I try to live life to the fullest everyday. I hate the effects of the meds, they make me have brain fog, and yes my brain often feels like an old attic, like there is stuff up there I should remember but can't seem to recall.
As far as getting past my dreams, well honestly I don't think I ever have. :( At the same time maybe that's not such a bad thing. Those dreams give me a point of reference to build new dreams off of. I know that I will never be the energetic person that I once was, but I have learned what it's like to be humble.
Mark this one's for you. I always imagined a different life when I had grandchildren. A life where I could run around and travel with them and do all of the things I didn't get the chance to with my kids. I will still be that grandmother, but I will just be a little different, that's all. The grandchildren will feel love "like no other" from me because I know how precious time is. They will spend all the time with me that I can handle, BUT I will make the most of it. I won't be traveling with them, but I will always be there.

IMHO, CP touches every part of our life, there's just no way around it. I think one of the keys is to keep adjusting our outlook. It's the most dificult thing I do and many times I break down and cry but then I pick myself up and keep on truckin.:D I also believe that God will never give us more than we can handle, even though there are many days when I start yelling that I'm at my limit!!:(

I will get into this more as answers start to come in. Mark this is a good thread and I hope the answers are helpful to us all!!

Kathi49

03-25-2007, 11:11 AM

Mark,

When one door closes, another one opens...there are still dreams; only of a different kind. Like Lisa, I look forward to the day my daughter marries and has children of her own. I won't be able to go and do...but I will still be there...I hope. :) I think Lisa has the key, just adjusting the outlook and since you like rock n roll - keep on with the changes. :) And as Lisa says, keep truckin along. I know, it is hard with your limitations, but I truly believe you will find your niche and make the most of it. :)

Kathi49

03-25-2007, 01:38 PM

Mark,

I was thinking of something of this morning after I read part of your statement on "outlook on life".

Sorry if this is a little off topic but it made me think of something that happened with my daughter. And because you used to be a coach, you might appreciate it. So, here's just a little story if you don't mind.

My daughter was in cross country when in 7th and 8th grade. There was a girl on the team with something wrong with her leg. I can't remember what it was but it was some kind of condition where her leg would never get better. Yet, the coaches admitted her to the team because she was passionate about running.

Well, I was at a meet one day and of course one girl came in first, my daughter came in like 3rd or 4th. But this other girl was waaaaaaaaay in the back; clear across the field.

Well, my daughter comes over and being the sass pot she can be says, "That girl makes me so mad, she is always sooooo slow! The other girl is always first and is our best runner!"

So, I said, "Hold up! I want to talk to you." And I pointed to the other girl and said, "See her! SHE is the one I admire!" My daughter looked at me if I were crazy. And I said, "_____, the girl that came in first might ALWAYS come in first, she may have a lifetime of FIRSTS and always win every time. But, if and when something comes along that smacks her down, she will be the FIRST to fall apart because she probably will not know how to deal with adversity. The other girl, she knows what it is like to try to overcome obstacles and she will probably have a lifetime of them. But she will also know how to handle them. So, you better think twice about how hard she is trying and what she is contending with."

My daughter then stopped, looked at me and said, "Mom, I never thought about it that way. You are right. She does try very hard."

Okay, so, I might have been a little emotional. But I did NOT want my daughter going about life and thinking ill of people with disabilities. Nor did I want her thinking badly of other team members.

It was just one of those little life lessons where "outlook or a different viewpoint" was everything. I just had to try to teach my daughter that being first isn't always about being best. She also had to consider what other people are faced with every day and to take a different viewpoint.

Okay, back to your thread...I was just thinking of the term "outlook". :)

Scar Tissue

03-25-2007, 03:01 PM

Every breath I take since CP took over my life has been different. We all would probably agree that many things we've hoped and wished for were gone in a second, and depression probably rules our lives more than anyone here would like to admit. I spend a lot of time these days in my low spot, (The point where you really don't care if you take the next breathe or not) and then I stop and think. Things in this world could always be worse! Who am I to set here and feel sorry for myself when there's people starving, Our soldiers are dying in Iraq, their family's are going through Hell, and the list goes on. The sunshine in my life is my wife, kids, 3 grandkids, and both of my parents are still alive. I owe it to them to try and make their life as good and comfortable as I possibly can. When I see them smile from something small I may have done, a joke, the little bit of housework I can do, etc. things turn around for me and I come jumping back from that low spot. I may not be the Husband my wife married, or the Father my kids grew up with, but I'll be damned I'm going to be the best one I can be now. I guess the point is, I take myself out of the equation, concentrate on them, and without even trying I stop feeling sorry for myself. I hope this makes a little bit of sense, but so far it's the only way I've learned to deal with this constant, grinding, life altering pain!!;)

Kathi49

03-25-2007, 05:48 PM

Scar Tissue,

I really liked your post.

Sometimes if you do take yourself out of the equation and concentrate on something else, it DOES help! And, yes, you make a lot of sense. :)

Kira

03-25-2007, 07:00 PM

I don't think the pain itself has changed that much about my life, honestly. I think that what has changed things the most has been being sick in general... all of the hospitalizations and the disruption that they cause have probably changed things the most. The unpredictability is really challenging. I have had to give up a lot because of this illness. The other thing that is really hard is that I have come to know a handful of young women roughly my age with mitochondrial disease, and some of them have really gone downhill suddenly and severely recently (hospitalizations lasting months at a time; congestive heart failure; kidney failure; being put on hospice care; developing seizures; losing the ability to walk), which scares the crap out of me.

So I would have to say that it is not the pain so much that has changed things... the pain is just another part of this that I have to live with every day... but it is not any worse to me than the exhaustion or the vomiting or the fear or the sense of loss. It is just another part of this.

I do have to say that being in pain much of the time has changed how much I feel able to do. It has forced me to re-evaluate how much I push myself. Being sick in general has also forced me to try to find other ways to define my Self than by what I am able to achieve in life. And I have been working hard on learning to live in the moment and be really mindful.

GardeniaGirl

03-25-2007, 07:12 PM

This is a powerful topic. I always enjoy reflecting on things like this.

Last night I did a little mental exercise with myself and I imagined that I woke up the next day and I was perfectly healthy. No more disease of any kind, no residual damage from the disease. Just perfectly healthy as if the last 10 years of illness, from age 27-37, haven't happened.

Then I asked myself, what would I do?

The first two things I could seriously visualize myself doing were quitting my job and then going off to travel at various places around the world for at least a few months.

This was a very powerful experience for me because it showed me how compromised I feel in life.

I am lucky to have a job, I am lucky I was able to finish my graduate degree despite getting sick, I am lucky to work in a field that is my passion, although in compromised job title/position and not full-time, and at a place that I would never have been stuck at for 7 years if I hadn't been sick.

But, underneath it all, I hate all this compromise.

I really do.

Its like wanting a big banana split and getting a small bowl of half-melted, cheap vanilla ice cream instead, and then waking up every day and having to tell myself how lucky I am to have any ice cream at all.

This is a mental burden that wears on me and drags me down. I can distract myself most of the time, but underneath, it still bothers me a lot.

ErinENj

03-25-2007, 07:55 PM

This life has completely changed my thinking about everything, but mostly about my life and what I had planned for it. There was a time when I had it all planned out: I'd graduate from college in 2003 or 2004, then go out and get this fantastic job, hopefully, I'd then get married, have some kids, and have a great life that was full of happiness. But, as my back has gotten worse and worse, and as my pain has continued to increase, each little hope I had for myself and for my life eroded a little more until I'm where I am now. Long term planning is completely out of the question. I can't even plan for next week because I don't know how I'll be then. I don't know if my pain will allow me to do what I have planned, so I don't bother planning anymore. I can't really even plan for tomorrow. The only thing I know will happen tomorrow is that I'll be in pain. I was a schmuck today, and went way beyond overdoing, so tomorrow is a scary thing to me right now.

My old dreams are gone. I know that. To put it mildly, it sucks. But it is what it is. I don't have an option about it. They're gone forever. They've been replaced by hopes. I can hope that I'll graduate, hope that I'll get that great job I've always dreamed of, hope that I might be lucky enough to get married, and maybe even be lucky enough to have kids and live happily ever after. It might happen, and it might not. Who knows?

I think one of the biggest things that has happened as my dreams have changed is that they mean that much more to me because I know that I have to work that much harder to achieve them. Graduating from college is an accomplishment for anyone who pulls it off. For me, it's a freakin' miracle that I've made it through. And that makes me all the prouder that I've managed to do it. If I do get to accomplish one of those old dreams, that's a huge deal. It means that maybe, just maybe, even though I'm in this situation, I just may get what I have always wanted. I may, but I may not.

Tomorrow may be great, but then again it may suck something awful. For right now, my dreams and hopes are limited to one thing: making it through tomorrow and being able to figure out a way to handle what each new day throws at me. Those dreams that I always held so dear have changed to suit my condition because I don't have a choice about it. This situation has forced that upon me, and either I can hold on for dear life to the life I thought I would have 10 years ago when I was still a young impressionable youth, or I can try to figure out how to make some of my life goals become reality. I take it one at a time, and throw all I am at it, and hopefully I'll accomplish it. My therapist told me once that I take all of the anger, the sadness, the frustration, the dissapointment, the depression, guilt, hatred, all of those emotions we all have thanks to this 'condition' and I ball them up and use them as my energy to try and make my dreams come true. It's a beneficial way to use those emotions to make my life better, and I doubt I'll ever get rid of those emotions, so I'll always have that strength and energy to do what I have to in order to make a life goal happen.

For the first couple of years in this life, I was a very angry person. I was so angry because all of those things I thought I was, and all of those things I had hoped to be were gone, and there was no getting that back. I couldn't understand why this had to happen to me and why it had to happen then, when I was in the prime of life. College is supposed to be the time when you learn about yourself and start to figure out your place in this world, and maybe even a time to have some fun and enjoy life. But for me, my college experience was ruined. I was just starting to figure these things out and then this happens and it takes me out of that life permanently. For me, college will be half a great memory, and half a nightmare.

My dreams haven't changed so much as the path leading to them has. It's not going to be as easy. This 'experience' isn't so much of a brick wall as it is a speed bump. It does make me slow down significantly, but doesn't stop me from getting there. It may have taken me 7 years to finish college, but I'll finish it, no matter how long it takes. I refuse to fail. I can do it. It's gonna hurt, and it's gonna be hard, but it will happen. And I like to think that while it may take a bit longer than I had thought it would, I'll get to all of those things I wanted to do in my life. I hope that will happen. If there is anything I'm sure of, I'll always hope. You never know what tomorrow will bring. As small as the chance is, I could hypothetically wake up tomorrow morning and be fine. Or I could be in tremendous pain where I won't be able to get out of bed. I may know that the second one has a much better shot of happening, but I still have that hope that tomorrow will be better than today. It could happen. So my dreams now are more short term. And they have a whole lot of more hope in them. Maybe with just the right amount of hope, effort, emotion, and energy, I can achieve some of the things I've always wanted to. I hope.

BrokenBladder

03-25-2007, 09:48 PM

Kathi your post about your daughter was very good.:) You taught her a lifetime lesson that day.

CP obviously affects everyone else differently and yet the same in many ways. We all deal with pain differently and yet we are all survivors. I had a friend tell me one time, "Lisa I have seen you at the top of your game and I've seen you hit rock bottom with your illness, but one thing that has never changed is that you survive it all." At the time I thought, yeah right, but looking back on my life he's right. Keep in mind this is a friend of 20 years. Don't get me wrong I still get mad at my disability and I still cry for what I perceive could've been, but all in all my life isn't terrible. I've gone through abuse, divorce, extreme vomiting, and a host of other things, but I believe in my heart that there is a reason for all of this. I have to believe that somehow it's making me stronger and I still hold out some hope that my condition will improve. If it doesn't then I will be okay with that too.

This is a great thread!! Please let's keep it going!!

Kathi49

03-25-2007, 10:43 PM

Lisa,

Thank you! I was a bit emotional that day many years ago. I just wanted my daughter to stop and think twice about things people have to contend with. Oh, and I also told her which I forgot to put down, was could she (my daughter) imagine what the other girl might be feeling and thinking knowing that everyone was watching her.

And, ditto, ditto, ditto what you just said. :) You stated exactly how I view the whole mess LOL!

I did want to add that reading through all of these it is obvious that people are at different stages or phases in their lives. And it is VERY admirable that everyone continues on no matter what. Some are attending college, some are still working and I am retired. I consider myself lucky in a lot of different ways. It is a new chapter in my life even with pain and multiple conditions. So, there ARE some positives. I could list a lot of them but the ones I like best...NO SCHEDULES! No more reporting to someone and no more "have to's"! LOL Other than doctor appointments. :) And believe me, there are a slew of them.

Oh, and I had a friend, a co-worker, once say, "No matter how much pain you are in, you still come to work with a smile on your face." Her words meant more to me than she realized. Probably because she was validating what I was experiencing and understood just how hard I was trying and had seen me at "rock bottom".

Well, anyway, if I improve, then great! But if not, I will have to cross that bridge when I come to it. But for now I am okay...as much as I can be.

Mark N

03-26-2007, 01:05 AM

Kathi, you took the words right out of my mouth as I was going to say the same thing about everyone being at a different stage of CP and still plugging away the best they can.

I know that CP has changed my dreams but I have adapted to my current condition. I don't remember too much about all the PT, injections, doctor visits, scans, and surgeries unless I sit down and try to remember all that has happened. I have been able to filter out the negative aspects and to focus on the positive things that I have gotten from my disability. CP has taken big chunks out of my remembrances and it is like I was plucked out of my life and put down in my current condition. Each day is so similar that it doesn't seem like I have proceeded through life but instead like I am repeating each day. Before, I had days that established the passing of the year whether it was holidays I had off or the change of seasons that indicated the end of the sports season that I coached. Even the change in students each year was a reminder that time is passing and now I am not as aware of passing time. The stages of our lives have become suspended for me. It is almost like I am in suspended animation and the world continues to go on. I am still involved with my family and the friends I still have but it is like it doesn't apply to me. My life's passage revolves around my pain, disability, and meds instead of the normal life stages. In some ways it is good because I still feel young even though my body is betraying me. As time goes by I can still see myself involved with my family and watching as they grow and move on.

Kathi49

03-26-2007, 07:58 AM

Mark,

Good point. It DOES seem like the days repeat themselves at times. Or, they revolve around the meds, etc. Then, there are days like last week where every day was full of doctor appointments. Of course that is my fault because I lined them up like that. But I was coming and going all week long and it was tiring and painful. But I did that because the weather was so much better. In between times on one particular day, I had lunch with my best friend. So, no matter how hard it gets, I can still take a little time out and just talk and laugh with good friends.

But, I don't feel like I was plucked out and put down into this new chapter. I chose to stop working. So, there's the difference for me anyway. And again, if anyone thinks that was an easy decision; it wasn't. I thought about it for 3 years as things went from bad to worse healthwise. I was just extremely lucky that my business line offered the "Buyout" right at my 25 year mark. And it is kind of funny because most of the time when they offered these, there might be maybe 5 or 6 people taking them, depending on their age and time in. The time I took it, there was something like 25! Which is extremely rare. But not only were they burnt out probably, or had their time in, but there is another example of how the "boomers" are leaving/retiring. But at least it makes room for college students to come in with new and fresh ideas. :)

I was thinking about something else too and it may have something to do with why I am not depressed all the time. You have talked about testosterone before. So, I am going to address estrogen for just a minute.

I used to get PMS bad! And I mean ups and downs ALL the time. It's pretty normal I suppose due to the fluctuations. But anyway, every month, like most women I suppose, I had to contend with that. Now, that is when I would cry a lot or be extremely moody and all the other stuff that goes with it. But having a hysterectomy changed all of that! There was some good and some bad that came along with that. But the very best thing was...no more ups and downs LOL! And now that my ob/gyn has lowered the HRT just a bit more, I feel even better as far as my legs go.

Hopefully, I can stop it altogether in another year or so. I am just saying that I no longer and haven't for quite some time, had moody spells or cry a lot like I used to. I WILL cry when in pain, when it is severe. But that's pretty normal. But I just don't sink into these depressive states like I used to every month for a few days.

Now, please don't get me wrong. I am NOT advocating anyone get a hysterectomy just to feel better. I had to have it done but like I said, I did notice a change in the moods, crying spells, etc. It just disappeared. :)

Anyway, yes, it is admirable that people keep plugging along. I know what it is like to try to work and achieve goals while in constant pain and it is tough. And, Mark, you know for yourself when you had to say enough is enough I have to stop. But we are a little older so it is a little different. The younger people still have to work or attend college so my hat is off to them because they are probably contending with a lot more than we are right now. And what I mean is...we are at home and can rest if we have to. They can't. So, in a lot of respects it is probably tougher on them as they battle with this every day. We battle it from a different perspective. If we are not careful and keep active in any way we can and not get isolated, we could end up wallowing in self pity. Easy to do when you are not out and active in the world. So, I am just saying that as long as we have things that keep us interested or hobbies and things we can do, and keep family and friends in our lives, we'll be okay. :)

jena1225

03-26-2007, 02:41 PM

Each day is so similar that it doesn't seem like I have proceeded through life but instead like I am repeating each day. Before, I had days that established the passing of the year whether it was holidays I had off or the change of seasons that indicated the end of the sports season that I coached. Even the change in students each year was a reminder that time is passing and now I am not as aware of passing time. The stages of our lives have become suspended for me. It is almost like I am in suspended animation and the world continues to go on. I am still involved with my family and the friends I still have but it is like it doesn't apply to me. My life's passage revolves around my pain, disability, and meds instead of the normal life stages. In some ways it is good because I still feel young even though my body is betraying me. As time goes by I can still see myself involved with my family and watching as they grow and move on.

Mark - I could not have explained it better myself, but amazingly, that is exactly how I feel! Especially the part where everything revolves arounds my Appt's, pain, meds, MS. I keep telling myself to "snap" out of it and stop being such a wimp! I KNOW that is wrong, and after 13 years with MS, only less than a year with CP, I should know better. I just cannot seem to give myself the break I deserve, without the guilt, STILL! How do you do it??

Mark N

03-26-2007, 04:55 PM

Jena, when I first stopped working, I should have stopped 5 years earlier, I would feel so guilty feeling decent for an hour or two and going to the store. It just seemed like if I could do a bit better I would go back to work. Afterall, I worked with all these problems before [justnot so intense] and was I being lazy taking the easy way out? There was no way anyone knowing what I went through and how much work I have done in my life would think I was taking the easy way out, so why was I so hard on myself?

I took me a few years Jena to work past this guilt because my upbringing and my belief system required me to work no matter what I was going through. It wasn't until I accepted that this pain and all the impairments that go with it was just bigger than me and it wasn't me who had backed down but the pain that had grown to big for me to deal with. All I really can say Jena, is it is a process and one that you need considerate friends to help you get to the point of not blaming yourself. I found those friends here more than the ones around me. They helped me develop a new perspective about what I had done in my life and how to accept where I am right now.

Give yourself time and just remember to not diminish all the struggles you have gone through that would have crushed other people. There aren't many of us that are looking for the easy way out and we need to give ourselves a break on that.

BrokenBladder

03-26-2007, 07:56 PM

Mark I just wanted to chime in and say I agree with you!!
The guilt is an ugly monster, but we must realize that it really is bigger than us and we are doing ourselves more harm by trying to fight it.
Great answer Mark!!

Kathi49

03-26-2007, 08:21 PM

Mark and Lisa,

Agree! I went through the guilt too when this all began. I felt I was letting everyone down. Long story. But, like you guys said, once you start accepting it, it is what it is, there is no need in feeling guilty. Nobody can help this stuff...it just happens. :( So, don't beat yourself up too badly about it.

Kira

03-26-2007, 10:56 PM

My guilt is still HUGE. I hate that I cannot get my lazy butt off of this couch and do the things I need to do for school, work, friends, and family nearly as often as I need to anymore. I feel like I am doing a half-assed job at everything lately and it really bothers me, even though in my rational mind I know that a lot of why I can't keep up anymore is beyond my control.

curiousforever

03-26-2007, 11:03 PM

I ask what day it is, what month it is....when someone asks how old I am (common question at doc's offices) I have to think about it....

I also used to be able to multi task. No longer. I get really tired from trying to hear the boys all talking to me at once. Even when I try to give each a turn - one hs to talk over him.

I am doing crosswords and suduko, etc to hopefully keep some brain function (although my dad would say you can't lose something you never had - and bring out the blonde/short jokes ;)

It's just severely affected my ability to process things. And I am always losing my train of thought.

Mark N

03-26-2007, 11:44 PM

CF, I do crossword puzzles to keep up my vocabulary function. I have found my math skills haven't been harmed but my language skills have taken a beating.

Kira, it isn't easy to get over the guilt and I have found you have work through it. As Kathi said earlier, it is easier to have this happen at a later age as we don't have the same concerns you have. I can look back at what I have done and know I excelled and wouldn't give up itwould have been harder if this happened back when I was in college. I dealt with pain but it was a nusicance not something that dominated my life. You just have to move the understanding from the rational side to the feeling side of your being. You have to give yourself the benefit of knowing you can't help this so that you can deal with the pain better. I know your life will get much easier as you accept your CP and don't spend as much effort fighting it. I hope that you are able to understand your condition and how it is impacting your life in a way you can't control it.

ErinENj

03-27-2007, 12:41 AM

I'm actually the exact opposite Mark. I can remember everything. I remember when my last injection was, I remember my last appointment with my surgeon, I remember every minute of every pre- and post operations, what my pain was like yesterday, two months ago, even two years ago. I can even remember how I felt when I came out of my first surgery 4 years ago. As weird as it is, I can remember the conversations my family had with each other when they thought I was asleep when I was in the hospital the very first time I was there for this. It seems like I can remember each and every day of the past 4 years. I think the reason I don't forget is because I'm in school. I have to know what day it is so I know what class I'm going to. I have to pay attention to the date so I can know when things are due. And each time I see the date, I can remember what it was like 5 years ago at this time. Five years ago right now, I was trying to figure out how I managed to fracture my T12 vertebra and working my butt off in a horrid corporate setting. And I was trying to figure out how I was going to keep my friends down at school when I wasn't there with them like they thought I should be. They didn't understand why I left school after an awful semester (a few highlights: I fell down a few stairs at a party and ended up breaking my tailbone. I thought that was the worst pain I would have ever had to endure. I wish I had been right. I was very wrong. I went home and had an epidural and returned to school on a Sunday night. Monday morning I woke up early for an 8:30am class, and went to the bathroom. I was sitting at my desk when I suddenly felt like I was going to be very sick, so I ran over the people sleeping on the floor (my one roommate's friends, except she was in another room) and was going into the stall, and then I woke up with a girl from the adjoining room standing above me asking me if I was okay and what I needed. She got me a bottle of water and my best friend. I had blacked out and bashed my nose in on the large bolt on the back of most public toilets. It was broken and my blood pressure was so low that the woman at the health center called the ambulance and told them they needed to be there NOW. She really couldn't believe that I had walked there under my own power with a blood pressure that low. I think the top number was in double digits by the time I got there.)

I have a daily reminder of everything I missed and everything I had had before all this started because I'm on the same campus, with everything the same, except me and the people there. Every day when I eat my lunch alone, I remember that I'm there alone and why. I wish it could just blend into one, but my life doesn't seem to let me forget.

I think that once I move on from this stage in my life, I might be better off. When I leave campus, I leave all of those daily reminders of good memories behind. I'll finally achieve what I have spent the past 7 years working for, and the past 4 fighting for, and what all of my friends have done. I will finally not have to think about how alone I feel on campus and how lonely I get there without them and how much fun I had with them when I was okay. I hope that once I get away from the things that remind me of the 'before' me, I'll stop being reminded all the time of exactly what I've had to deal with, what I've gone through, what I've sacrificed, and what I miss more than anything.

As for guilt, I used to be the queen of feeling guilty. I still do sometimes. I felt guilty that I was a huge burden on my parents, that I was 'bleeding them dry' according to my brother, that I was making my mom's life hell according to my aunts, that I couldn't make this all go away so no one would have to worry about me, and that I couldn't make 'me' go away. I still feel guilty some times when I need my mom or dad to do things for me that makes their lives more difficult. And I still feel really guilty when my aunts remind me of exactly how hard I'm making my mom's life. One especially knows how to push that button. She's the one who said to me, just after my second surgery, that she had 'the same thing happen' to her and that she just had to go to her chiropractor and she was perfectly fine, so I should suck it up and go to a chiro and stop faking it. The killer? She says that if I had just asked her for her input about my treatment, she would have saved me a few surgeries. And she said this after my first 2 surgeries that screwed my back and after not coming to visit me once out of the three times I was in the hospital. Even my aunt who lives 2 hours away made the trip up just to see me and she couldn't be bothered, but she should have been consulted before I decided on treatment plans. And both her and another one of my aunts make sure that I feel guilty about how I'm a financial burden on my mom and how her life would be better without me in it. They both have asked me on numerous occassions why I can't just get a job and stop wasting my time at college. Especially since neither of them went more than 5 years, so going for 7 is just a waste of time. If I could just get a job and start making money, I can stop having to depend on mom for my money and I would have enough money to move out of my parents' house and let my mom live her life without having to worry about me. They really know how to push my buttons. And when they do, I get overwhelmed with guilt, but once I get over the shock of them saying that stuff to me, I remember that they are stupid, and don't know a darn thing about what's going on with my back. They still call me a drug addict and a wuss because I'm on meds, and they say it because they can't understand what this pain is like because they rarely see me.

I do get some times when I'm really guilty about what my life is and how other people have to worry about me. That's part of the reason I don't talk to my friends much. If they don't know what's going on, then maybe they won't worry so much. And if I hide my pain from my mom, then she won't worry so much. I seem to do it pretty well, but I know that she can kinda read it on my face. I know other people can, so I'm sure she can too. But she knows not to say anything because she knows that I'd feel guilty about making her worry. I've gotten better about not taking things some people say to me to heart and I've gotten better at understanding that I don't need to feel guilty about being a burden or a problem. My parents want me to have a career and life, not a job I hate and misery.

Okay, this is really long...so no final comment just 'cause I'm sure your eyes are starting to blur from reading so much!! :o :D

Mark N

03-27-2007, 02:00 AM

Erin, it is too bad you have to put up with being called a drug abuser. Next time, ask them if a diabetic is a drug user because they need insulin shots. I can remember all my appointments, injections, PT, surgeries but I choose not to have them in the front of my mind. If I thought about all those things I would give up and die so i put them out of my mind until I need the info.

One day soon you will be able to be on your own and away from the people that drag you down. I try to explain to people that don't understand what it is like for me and if they still don't get it and ridicule me I tell them to go fly a kite.

You are at a different stage of theis disease Erin and it is the reaso I ask these questions because I get input from people that have a different outlook. That way, we can all learn things about what it used to be like or what it may be like later in our lives. Thanks for the response and I hope you can tune out the naysayers in your life.

jena1225

03-27-2007, 11:26 AM

Thanks everyone. A lot of it has to do with the fatigue I have with my MS, along with the pain, so it is a catch-22, or more appropriatley called a: "double-edged sword! I take meds for fatigue, and oxycodone for pain, but, the oxy does not really make me feel the "heaviness and weakness" the fatigue makes me feel... but

I also take an injectable that is supposed to have the SE's of feeling like having the flu and even possibly pain, but who can tell what is causing what, and what med is helping/hurting what, etc.. aarrgghh.

I have a very supportive family, and noone doubts me at all, so I have no reason for the guilt I feel, EXCEPT that I cannot be that "great, fun mom!" I know, that is just not true, I just have to start thinking differently. I think I may need some counseling.

Ok, got off subject, sorry.

Erin, so sorry you have to endure that from your own family, very sad :(

My mom is great! BUT, she asks me every day how I am doing, and if I say "not bad", or "ok", or "good", (I got really tired of telling her and everyone the truth), she gets a little excited like I am all better! lol. I know she means well, but... also, I know she is thinking that if I am taking pain meds, I should feel fine, right? Then I start thinking that. I start to doubt myself, like, Well, I am on meds, so maybe I AM being a wimp. I do think my dosages are fine, but there is always that nagging pain that remains. Then, of course, there still is the fatigue....

Mark N

03-27-2007, 12:21 PM

jena, the problem with CP is ther is no cure just treatment that helps manage [not eliminate] our pain. Add MS and the meds with it and you have a double whammy so you really need to change the way you feel about yourself but it will take time. When you believe in yourself [which everyone should] you will feel guilty about not doing the things you want or need to do. The meds and your MS conspire to tire you out too much to stay active [my meds do that I don't have to contend with MS]. As you gain some life experience/get older you will learn to give yourself a break.

It is good you have such a supportive family although that support can have its own drawbacks ie your mom thinking feeling better means you are well. Appreciate their support and live the best you can.

jena1225

03-27-2007, 12:38 PM

Thank Mark. I absolutely appreciate them for sure, they are my lifeline!

I am 36, so you would think I would not have these hang-ups.... :rolleyes:

Matuboo

03-27-2007, 05:06 PM

Cp has such a big impact on our lives that it impacts every aspect of our lives and seems like nothing is untouched by it. There are many aspects of this, our memories, our outlook on life, our short term memories, and our lifetime memories of our life. For those that have dealt with this for years it is hard to distinguish between the impact of CP and getting older. Some of what I describe could be as a result of aging but at fifty I didn't expect to have this much cahnge and I am sure most of it is my CP and meds.

I have seen how CP and my meds have slowed down my ability to think about different things at the same time. I used to be able to process several things at the same time and I find that I need to concentrate on one thing any more. I used to be able to pull info from my memory at an instance and now it is like I have to go back into the backroom and sort through all the outdated books to come up with the info I want. Many times I am at a loss for a word when I know I have used it forever and I can tell it is right there but I can't call it up.

One thing I can tell is that each time I had been in surgery for hours and had been out of it for a long time my IQ dropped based on the way it feels and by the small test you take to evaluate your own IQ. I know the test aren't extremely accurate but I think it does show my decline from the surgeries. I seem to drop 10 points with each big surgery. I know the New England journal of Medicine did a study of heart patients that went under bypass surgery and found they had lost about 10 points off their IQ scores so I know I am not alone with this.

My dreams have been destroyed and I have had to establish more dreams that fit my current condition. Everything I had planned in my life is out the window, all the trips I had planned and the way I was going to be a part of my children and grandchildren's life. I will still be part of the kids and grandkids life but it wil be much different that I thought. I won't be the fun loving wild grandpa that wrestles around and tosses them in the air or takes them on trips to amusement parks. I will be as big a part in their life as I can be and I will still be able to be an important part of their lives but it will be different. I had dreamed of taking a couple of big trips to visit places I always wanted to but with my limited ability to travel that won't be possible any more. I just have to be content with the travel channel to see the places I would like to experience.

I will have to write later on the change in my outlook on life and my lifetime memories. I want to here how you have been impacted by CP and yur meds and how you handle it. How do you get past all the dreams that are gone and how do you reestablish new dreams?

Actually, there are things that are untouched by it, to me anyway. As for how it's changed my thinking, I try to think about it as little as possible and keep busy; spending as much time off the internet as I can has helped me tremendously, I used to spend 4 or 5 hours a day on the net! I do a lot of reading about history and am very involved in several hobbies (that don't require a lot of physical energy.) The other side to the internet it can be a wonderful tool, especially for people who are not able to get out of their homes and have to spend a lot of time inside.

My pain levels are probably not as high as yours but I have other health issues as well that greatly impact my life. However, I can imagine that if my pain was in the 7-8 category most of the time, my thinking would be a lot different. Still, I can't deny that it has changed my life drastically, I have lost a lot of friends (off-line) and don't see online friends as a replacement, it's just not the same. Every now and then I'll come across someone online who I really connect with but even in those cases, the chances of seeing that person and spending time with them is small. Most of these are married women, so that could present a problem, even if nothing was going on.;)

When I need information, or support, I usually come to BT. As far as offering support to others here, it's feels good to help when I can but almost everyone here knows more about CP than I do, so I rarely give advice or support here with regards to pain related issues since I have multiple medical problems and have spent more time learning about those issues than CP.

Muscle twitching and cramping is a huge problem for me and when my symptoms started, I thought I had ALS. That was 4+ years ago, my pain levels vary from 3 to as high as 7 (going by the charts in the ER.) The only time I've been near 10 is when my appendix ruptured. I hear people all the time at the pain clinic I go to state that their pain levels are 10, in fact, that's all I've heard. If that's truly the case, I can't imagine the agony.

You seem to have a great support network here Mark and that's obviously important to most people. I am sorry that you've had to watch so many of your dreams pass you by, I can relate to that. I may have to accept the fact that I will be alone for the rest of my life, that's the hardest thing for me. I envy you for having a family, children. I made a lot of mistakes in my 20's that possibly destroyed any chance of that for me as I let so many opportunities slip away. Of course, it's not a foregone conclusion but things certainly are not looking all that good right now.

Good Luck,

M

M

Mark N

03-27-2007, 06:43 PM

Kathi49

03-27-2007, 06:52 PM

Matuboo,

I really liked and agree with your first paragraph.

I will be the first one to say that I am on the computer a LOT! Not 24/7 but enough to wreak havoc with my cervical and lumbar spine. I need to follow your lead and stay off of it (no offense to anyone here because they have all been a great help). :) It is just that I know sitting at a desk and a PC is what did me in to begin with.

And I like the fact that you said you read a lot of history. I love genealogy and it is a hobby of mine. But most of the research is online so it doesn't take long before the neck and back start screaming at me to stop. I have had to slow way down with the research and just do a wee bit at a time. Whereas several years ago I could sit here for hours and get lost in it. So, now, I order books and get some information I need that way. It still hurts though. To look down for too long also causes problems.

Anyway, I had a second fusion in September and there wasn't much else I could do except wait out the winter and do small tasks around the house and I was on here alot which probably didn't really help matters muscle wise.

I also agree about the multiple conditions. I have them too and a large part of the fall was spent getting all of that figured out and also reading up on all of them. UGH!

Hopefully, now that better weather is here I can take walks again, go swimming when I need and have to. And just be outside more...just doing little things. :)

Matuboo

03-27-2007, 07:41 PM

M, no friends in real life can't be replaced by on line friends but on line friends sure have helped fill the gap otherwise I would be almost totally isolated as I can't get out much. I am thankful for my family and can tell how much you wish your chances were better. A spouse can be a great support if you have the right one. It is good to be able to talk through the changes going through in our lives and to have someone that will support you as your health gets worse.

Watching my dreams die is just a part of life to me. I have been blessed with with great success before I had to stop working. Because of the players I had go on to college and play along with a couple bplaying in the NFL and the opportunity to win championships and three times coaching in the state championship games. I feel blessed because I have had these opportunties and know that now I have other things to pursue, if I ever figure out how to work around my pain and the impact of my meds.

I have found the give and take here with different people to be rewarding knowing that I can still learn and help others see different perspectives. Your perspective helps me understand what it is like to deal with these health problems on your own. It also shows the different perspective you have because you don't have children and a spouse to deal with which will help when my kids move on with their own lives.

I hope you do find the right person for you if that is what you want.

Mark,

I don't know your medical history but from reading your posts lately (as I often do) I know you're in a great deal of pain and your life has been compromised in a lot of ways. What I also see, despite these circumstances, is a very positive attitude, something I desperately need to work on.

I agree that online friends can be a huge asset, as I said, it's especially important for people who are not able to get out much. I have made one or two really good friends on Braintalk and although I have yet to see them, I have spoken to them many times on the phone. They are both women with SO's in their lives so these friendships will probably be limited to occasional phone conversations and email. The fact is, I still consider them very good friends and am fortunate to have them. There was a time, however, when the internet consumed my life. I simply try to maintain balance now, as best I can.

As for your accomplishments, I would say that's something to be very proud of. I have also been involved in sports (as a younger man) and did some coaching in my 20's. I grew up playing both hockey and football and would love to have the physical and mental stamina to be able to coach, even a bunch of 5th graders, it is a rewarding feeling. I was never at the level you were but it's something I miss. I was also involved in the Big Brother program for a while and that was probably the thing I miss the most.

Thanks Kathi, everyone's situation is different. I'm at a point right now where I can still work (although not as much as I once did) and get out of the house on a fairly regular basis. I try to do this even when my pain levels are higher. With the MS-Contin, it can be difficult because I'm not quite used to it yet so a lot of times I depend on others to drive for me. I am fortunate enough to have a brother (although we do fight a lot) who is willing to help me out, despite our differences.

The funny thing is, I used to hate reading. One of the reasons I graduated college with a relatively low GPA.:o Only after I developed health issues did I come to realize that reading, history in paticular, can be rewarding. Sometimes it's just a matter of recognizing how good I really have it and how much worse things could be (reading about WW2 tends to make you appreciate what you have!)

Like I said, your situation is/was different, you had a fusion and really had no choice but to stay put, so spending a lot of time on the net was healthy for you. I have never come across a health board where there are pharmacists, doctors, nurses and people with 20+ years of experience in dealing with intractable pain. That being said, I think this is probably the best CP group on the net and I have done my share of searching.

I live in Kentucky and the weather here is absolutely gorgeous now, 83 degrees, more like June than March but I've lived here long enough to now that we'll pay the price for this in April. Mother Nature always has a way of balancing things out and two weeks of 75+ weather in March is not normal, although very enjoyable. I also look forward to swimming this summer, I love just being in the water, very relexing.

Genealogy is a hobby of mine as well. I had an uncle who died young and my grandparents also lost a little girl (Noell Marie) at the age of 3. These things were never discussed by my family as my uncle was a doctor who also had a drug and alcohol problem. I was able to find out when they died and actually see their names, which was very interesting. My uncle Jack was such a family secret that I didn't even know what kind of medicine he practiced or when he was born! Well, I've had more than my say here, wishing you all a pleasant and pain-free week!

M

Kathi49

03-27-2007, 08:18 PM

Matuboo,

You're right. This is the best website I have found. The CP and the Spinal Disorders are the ones I most frequent. And, yes, everyone is always extremely helpful. And it DOES help to pass the time on rainy days or when you seriously need some advice or questions answered.

BUT...you misunderstood me LOL! I was saying that sitting here for too long will really mess me up. So, I need to do as you are doing and and get out there when I can. I did today. Before my mammogram appointment (of all things lol) today, I met my best friend for lunch. She is crazy and always has me laughing. However, even amid the laughter my shoulders and upper back were hurting pretty bad. But I ignored it. Thursday can't get here quick enough (when I see my PM). AND, like you, I need someone to either drive me or at least go with me on MANY appointments. Some days I don't trust myself to drive. And at other times I am fine. But I am always taking the same dosage and the same meds as usual so I don't get it :confused: It seems to be worse when I have occipital pain because it makes me dizzy. But also I have to have a driver whenever I get an injection in my neck.

Anyway, Genealogy lol! I'll try not to bore people to death here. But when you mentioned WWII, yes, it DOES make you appreciate what you have! But I went clear back to one patriot which took 3 years to do. There are two more I still need to research and get the proofs on. And there is even more. That's why you can do this stuff for the rest of your life! What is the absolute best though is receiving actual letters from other researchers. They are great!! And full of stuff that is absolutely amazing. The best yet, though are two things. One is where this other patriot (the one I haven't researched fully yet) wrote a diary of sorts in his pension letters. When I received that from the National Archives the packet was thick! And his words were hard to read, but it is incredible. And the other was about my great great grandparents trek out west; it is chock full of information and fun to read. But, yep, when you read these it is amazing that they survived at all and makes me even more appreciative of the sacrifices they made. I'll tell ya, I have binder after binder of information that I need to get in order. But I have joined the DAR and now all I have to do is piggyback on the information already provided. But I love it! And have found long lost cousins; one that even worked with me and I didn't even know it until we talked one day!!!

Okay, enough of me. I get on a roll about this stuff because it so interesting!

Mark N

03-27-2007, 11:06 PM

Matuboo

03-28-2007, 12:51 AM

M, you have really helped some kids out with the Big brother program and after teaching many of them I know how important someone like you were in their lives. It would be great to coach again at any level but I have developed so substitues for it.

It hurts me to be on online very much as after ten or fifteen meinutes my pain shots up too much. But I gain a lot from these people and this site. It really helps when I can get out even if I stay in my yard or porch. Other times I can get out and visit but often it is just enough to be out in the sunshine.

I taught U.S. History and Economics in school and I loved the subjects. Sometimes it takes a while before you understand what you gain from reading and researching.

I am hoping at some point to get involved with Big Brother again but hope is all I have at this point (nothing wrong with that I guess.)

I have some of the same issues if I'm on for too long, I have to get up and move around a bit, do some stretching, hot shower and occasionally, I'll use Thera-Gesic for the upper part of my arm, it helps a little. I do have Hydrocodone for breakthrough but that in combination with MS-Contin makes me pretty loopy so I try to avoid that, if at all possible. The combination of those two drugs with the Klonopin I take is a bit much at times. I wish I didn't need the Klonopin but unfortunately, I do.

It always feels good to be able to get out in the sun, I have a small pool but since my pain issues have worsened, it takes a lot of energy to keep it up as it's an inground pool and I live in an area where we get hammered with bad storms (makes maintaining the pool much more difficult.)

My knowledge of history is limited to mainly WW1 and 2 and also the Civil War. The good part about that is, there are plenty of great books out there on those subjects so I am never lacking good reading material. As for economics, I had a tough time with microeconomics in college and recall having to work hard for a B. I admire teachers because it's something I could never do!

As for your last comment, I totally agree, it does take time before you begin to appreciate the benfits of reading and especially researching.

Kathi, it sounds like you've gotten a lot further than I have with regards to genealogy. I do enjoy using the Minnesota historical website (which is where I grew up) to research. I found it interesting that not more than 2 miles away from where I grew up, there was, at one time, large encampments of indians. Of course, they were eventually driven out or forced onto reservations. The area I grew up in contains many burial mounds and if I'm not mistaken, some where unearthed when they built the townhouses I grew up in.

M

Mark N

03-28-2007, 01:03 AM

Matuboo

03-28-2007, 02:46 AM

M, macroeconomics is a bit easier and if you understand it you can explain almost everything in life:D . Too bad my of our lawmakers don't understand economics or they wouldn't pass the laws that they do. Teaching was fun but a lot of hard work to, much more than most people can guess. Add in coaching football with all the breakdown films and game planning, practice plans, and the three levels of games along with keeping up with my class and the classes I had to take while teaching [once again most legislators have no clue about teaching or they wouldn't have the additional requirements after your first three years of teaching; but they all went to school so they think they know what we go through]. I still wish I could coach and teach but I have accepted my limitations. Thanks for appreciating what we did as teachers although there are many that don't know how to relate to the kids.

Well, both my grandmothers were teachers and both have sinced passed away, one lived to be 99. So, I have a great deal of respect since they both meant a lot to me and always made sure that I applied myself and my grades were up. I can thank them for my college degree, otherwise, I probably would have taken a different path in life.

I've always found working with children to be rewarding but I know in this day and age, a lot of teachers have it really tough. It's not the same as it was when you and I were growing up. There was a woman who posted in one of the forums I used to frequent that was a teacher in NYC, she was frequently frusterated by the powers that be and eventually ended up quitting her job as a result.

We had some pretty tough coaches when I was playing football as a kid. Even in Jr. High we were treated like men and expected to play like men as well! One of my ex-coaches is now coaching one of the most successful high school football programs in the state. He was a former college player that spent a lot of time on the bench but apparently learned a lot about the game as a result. Once I got into high school, playing football was a lot more fun, people actually came to watch us play (other than our parents) and having an audience made the game a lot more exciting. I was never a standout player but started every year as halfback. It was fun but a lot of work!

M

brians2000

03-28-2007, 04:48 AM

The one thing Chronic Pain has caused is for me to think about the old days when I did what I wanted without a care in the world. I used to go anywhere I wanted and did almost anything I wanted without having to worry about my pain medicine or how I was going to feel. I have been a scoliosis patient since birth but I never let that slow me down. After my surgery in 2000 I became a chronic pain sufferer same as you guys and gals. I am only 35 but my body feels much older and the pain medication helps but it is always on my mind when it will stop working. I also get tired of the way the pain medication makes me feel. Lately I begin sweating really bad after only 45 hours on the patch when it is suppose to last 72. I often wonder if I will ever get married and what kind of spouse i wuold be living with something that is always going to bring me down. Anyway I just wanted to add how Chronic Pain has changed my thinking. Brian

Mark N

03-28-2007, 06:40 AM

M, you remind me of the good memories of coaching and how I tried tomake sure all players knew they were important to the team. There is an awful lot of 'I' in the games now and harder to change that into 'team' the way it needs to be to have success. I had to evolve my coaching style to still instill the ideals of teamwork.

Brian, thanks for your input and it shows that CP changes our situation even if we have another condition earlier. I know it would be a worry about finding the right person but when you do you will know that she is supportive and understanding. For those of us that develop this after marriage it is hard for many of our spouses and many of us lose them as they walk away from our problem because they can't deal with it.

You have lived with this a long time even if your CP has just been the last seven years. The more you can get out in the public and meet people the better chance you will have to meeting the right woman. If CP has you limited to your house then I hope you have friends that include you in their activities.

BrokenBladder

03-28-2007, 07:44 AM

curiousforever

03-28-2007, 02:58 PM

[/QUOTE]

That was 4+ years ago, my pain levels vary from 3 to as high as 7 (going by the charts in the ER.) The only time I've been near 10 is when my appendix ruptured. I hear people all the time at the pain clinic I go to state that their pain levels are 10, in fact, that's all I've heard. If that's truly the case, I can't imagine the agony.

M[/QUOTE]

Funny isn't it? I have never used 10. Not after being in labor 4 times. Highest I think I've been after that was also a 7.

Kira

03-28-2007, 03:34 PM

I don't use "10", either. I figure that I need to save something for when I experience pain worse than I have ever experienced so far. But my rhabdo attacks hurt crazy bad, and I call them a "9" for sure.

Before all of this started, I naively thought that the pain I had post-op when I had shoulder surgery was baaaad. I called that pain a "10". Now, that pain is about a "5" in comparison to the other pain I have experienced.

I do think that it may hurt me when I don't rank my pain insanely high like some people do. What I have done is try to explain my pain scale to them (3 is walking on a sprained ankle, 5 is post-op surgical pain, 9 is my worst rhabdo ever, and I'm saving 10).

But last time I was in the ER with rhabdo, crying and shaking from the pain, my friend said to tell them it was a "12" or a "14" so they would get the point, because "8 or 9" doesn't sound that bad when they see people calling headaches and sprained ankles "10" all day long. So I did start telling them it was "off the charts" so they would understand.

If other people would save "10" for BAAAAD pain, then I think they would understand more when we try to use the pain scale realistically. But, because people use "10" for relatively minor stuff, it makes it hard.

Mark N

03-28-2007, 03:45 PM

Kira, like you and CF I refuse to use 9 or 10 when describing my pain because to me a 9 is so bad you can't communicate with anyone and a 10 is you are unconscious from the pain. I know it hurts me but like you, Kira, I explain what I mean by the pain level I give.

curiousforever

03-28-2007, 03:57 PM

I think it all comes from experience.

Like when my son has surgery (the 9th by the way) I expect him to believe the pain is a 10. Only due to his limited experience with pain at this juncture of his life.

And when he says that - I'll just give him a hug and yell to the nurses to give him something for pain.

Cause to him - it WILL be a 10....

jena1225

03-28-2007, 04:37 PM

Oh, I am horrible at scaling my pain! lol. I still could not tell you what my # is from day to day, but I am not good at things like that (estimating, etc...)

I like the idea of "describing" my pain rather than give a #. and do believe that is what I have done in the past.

Kathi49

03-28-2007, 06:30 PM

Mark,

I have to sit here and grin because I know you don't like using the #10. :)

I am sitting here thinking of all my surgeries and aches and pains and if I had to say, most were between 2 and 5. Actually, the tonsillectomy at age 20 was probably about a 6 or 7. That thing hurt pretty bad since I wasn't a small child and able to bounce back as quick. BUT the cervical headaches were 10's and off the charts. I know I keep saying that but it was the worst pain I have ever experienced in my life! Not even the hysterectomy came close. So, when or if someone asks if it is the worst pain I have ever had? Oh, yes!!!! I'm sorry but it was the kind of "oh, please knock me out" pain! Oh, and Mark, let me ask you. What about the incident in the ER? You know what I am talking about. Please don't tell me that was NOT a 10!!! I know better than that. :eek:

I would rather DESCRIBE it as well. But you know how the ER's are with the little pain charts.

Anyway, I think I have said before that spine clinic uses the "pain man" LOL! I think someday I should ask for something like 10 copies of them. That way I can shade the guy in with different colors and just have him ready to when I go to my appointments. To be honest, I did that once with the dermatome guy and my PM was cracking up. But hey, I just wanted to show where the worst of it was and what dermatome it was following.

Mark N

03-28-2007, 07:03 PM

Kathi, the impacted bowel at the ER wasn't a 10 in my book but I did hope to die at that time as it was a better option than passing the BM. I know I shouldn't stay away from naming a few of my worst pains as a ten but unless I am unconscious from pain, I have been very close, I will only go to nine on the scale. I just think doctors need a better way to measure pain as this scale is to subjective.

Kathi49

03-28-2007, 07:38 PM

Mark,

I hope you know I am teasing you! You are one tough cookie! :) Must be the military in ya. ;)

Sorry, but my ER episode was a 10 in the BM regard. :eek: Let's hope we never have to go through that again.

But I agree, pain is subjective.

Kathi49

03-29-2007, 07:17 AM

Kira,

I understand. Everyone does experience it differently. :) I was just messing with Mark. :)

And, everyone's conditions are different. But what you describe in your second paragraph is very similar to an attack of one of these headaches. Northing short of Toradol and Phenergan for nausea will stop it. But this was in the past. I still get the headaches but not to the severity they once were. Nowdays, when I get one, it is close to 8 or 9 but I know how to deal with it until it passes. If it gets very severe, it is off to the ER. BECAUSE my heart will race and blood pressure goes up and I do have a vaso vagal response to it and this is per the ER docs and paramedics. And for all the other conditions I range anywhere from a 3-5 if I had to guess. Now, today, I will go to PM. My shoulders and arms are trembling even as I type this. He has a procedure he wants to try but if this does not take care of it, he will have to investigate further into the C4/C5 and C6/C7 as potential culprits.

I think what would help get a better understanding would be read to the posts in the Occipital Neuralgia forum. The people posting there are telling it like it is. And believe me, some of them have had various surgeries to try to stop it. You would be surprised that most are not fusions.

I will just tell you what my PM said. "When you have arthritis in your cervical or lumbar spine, it is very painful. But when you throw neuropathic pain at it, it is debilitating." And he is right!

But you and I are speaking of two separate conditions. So, how we use the pain scale varies. I don't like using the pain scale myself. But when they ask, I tell it like it is. More often though, my docs will use the pain man to show them what dermatomes the pain is following. They don't use the pain scale per se, I was speaking of visits to the ER.

But as Dr. Steve said or implied, again two different conditions.

BrokenBladder

03-29-2007, 02:16 PM

I wouldn't normally get involved in the pain scale issue, but I feel compelled to chime in. Comparing pain levels is a dead end situation. We all feel pain differently and use the chart in a different manner.
I think our focus here should be that we are ALL in pain, period!!
This forum is for support for one another and not to say who's pain is worse than anothers. Just my two cents worth.

Mark N

03-29-2007, 02:24 PM

Lisa, this is what I have been saying about pain levels all the time; we are at a disadvantage until doctors come up with a real way to measure our pain [some test that shows it]. Even then it will not mean the same thing as what I can withstand is different than someone else. My wife had an uncle that could feel no pain. He was at danger because he didn't know when he had been hurt severely ie he had an appendicts rupture and didn't know it.

I look forward to the day when an easy test is developed because we will have less problem having doctor's understand our pain and giving us adequate amounts of pain relief because they can test to see when our levels get down low enough.

Kathi49

03-29-2007, 02:27 PM

Exactly Lisa!

It is a moot point anyway. And I DID say pain is subjective. :) How everyone uses the pain scale is up to them. :) :) It doesn't bother me one way or another really. I was teasing Mark because I know he doesn't like to use 10!

And just wanted to say my PM visit went well today. So, you can read my new post. :) I will PM you about the SSD. It was a great conversation!

Okay, back to the original thread of how CP changed your way of thinking. :)

Kathi49

03-29-2007, 02:48 PM

That's fine Kira. I don't want to argue either. :)

jena1225

03-29-2007, 04:14 PM

I feel compelled to chime in, sorry. I have no doubt whatsoever that Kathi was NOT saying her pain was any worse than anyone else's. If you have read any of her posts, without even meeting her, you can see she is just not that type of person.

Kira - you seem to be on the defensive but without reason. I am pretty sure that ""these headaches are the worst thing anyone could experience" was not supposed to be taken exactly the way it sounded, except if you are LOOKING to be argumentative. Sorry to be so blunt, but I feel that you took her whole post with the wrong tone, and I kind of feel bad, and the need to come to her defense.

Kira

03-29-2007, 04:35 PM

Sorry. Having a hard time with all of this.

Kathi49

03-29-2007, 04:51 PM

Thank you Jenna,

I did go back over my posts here and if I said "these headaches are the worst thing anyone could experience", I don't see it. So, if someone sees that, please show me. And IF I said that somewhere, I did not intend for it to demean or trivialize what anyone else is going through at all. What I said was along the lines of "these headaches are the worst thing "I" ever experienced. And, they were, as compared to all of the surgeries, testing, even childbirth and procedures I have had over 50 years. That's why I called them a 10...they were simply the worst pain "I" had ever felt in my life. But maybe I should have called them a 9 as my PM told met today; that by the time patients seek treatment they are usually at a 9. Once again, it is a moot point anyway. It is all in the perception. :)

I do think I told Glenn I could relate because they are horrendous. But, oh well. Truly, it would help one to better understand if they just take a look at the Occipital Neuralgia forum because the conditions are soooo similar as far as pain levels or tolerance goes.

Sooooo...

Maybe instead we should look at the seriousness of the conditions; both are potentially life threatening. And speaking for myself only here, I know I take a risk just driving a car. And those of us who have these surgeries of the cervical spine KNOW that just one slip of the knife and we could be paralyzed and/or stop breathing..the risk is there. We don't take these conditions lightly. Nor do "I" take anyone else's conditions lightly. :)

Kira

03-29-2007, 05:32 PM

BrokenBladder

03-29-2007, 05:59 PM

Kira I can tell that you're frustrated by the lack of understanding of your illness and I don't blame you for that.
At the same time use this board as your support tool, not to compare the amount of pain. We are always here and willing to listen even if we don't understand everything you've been diagnosed with.
I think everyone on here understands the difference between muscle pain from lifting weights or running.
I know you're frustrated but please try and be fair to everyone on here who gives their heartfelt advice and truly cares about everyone.
I'm sorry that you're having a bad day I do hope it gets better!!

Kathi49

03-29-2007, 06:08 PM

Kira,

I am sorry that you are up against all of this. I know it has to be hard to be young and faced with something like this. I have no doubt you are in incredible pain. I am just sorry that your doctors can't do more for you or maybe you haven't found the one yet that can truly help. I feel for you because it IS sad if they are just blowing you off.

I know it has taken a lot of us here and on the spinal disorders board many tries before we found the right doctor. I had 3 years of this pain before I switched and found the ones that did find the problem and treated it.

It is sad but true, we probably can't all differentiate between the pain you experience and we experience. Again, everyone has different conditions. I just wish someone could or would come along that has a situation similar to yours that could help perhaps.

But just know that everyone here tries in their own way to be supportive. Not everyone will always "match up" but just a kindly word does go a long way when we all are trying to cope with our situations. I do try to be helpful when people are experiencing the same things I did and do. I have also found this forum to be extremely supportive as well as other forums when I was in so much pain.

I do understand your frustration, but really, there is no need to be defensive with anyone who may have a different opinion or condition. We are all just here trying to help in the best way we know how.

jena1225

03-30-2007, 12:21 AM

That's just it... Glenn talks about having that kind of headaches, the people on the occipital neuralgia forum talk about it, even your PM doc talks about it. But even though I have met (over the internet) a handful of people with my underlying disorder (mitochondrial stuff), I have yet to meet ANYONE who has recurrent rhabdomyolysis attacks. The people I know with my disorder have all sorts of other problems (two are on hospice), but none happen to have the rhabdomyolysis part. So there is literally NO ONE who understands my disorder in my life. Including my doctors. So every time I try to get help for this crap, I am up against people who can't differentiate between this **** I go through and the plain, everyday "muscle pain" they get from going for a run or lifting some weights. I thank God that there is a lab to indicate how much muscle tissue has died (CPK), because otherwise I don't think that ANYONE would take it seriously. As it is, they really only take it seriously when I am having clear-cut attacks, but blow off the stuff I deal with between attacks from all of the scarring, calcification, and metabolic dysfunction.

In all fairness, based on your description, even though we may not know your "type" of pain, I am confident we all have a good idea of the "level" of pain you experience, as I think most of us have had the level you have at some point in our lives. Especially us moms! :eek:

I have had 3 abdominal surgeries (2 C-sections and a Laparotomy to remove an Ovarian Cyst) have dislocated ribs, broke my collarbone, had a HORID Spinal Tab that went terribly wrong, and an hole in my tooth that was infected and I accidentally bit down really hard on it After all that, I can honestly tell you that the tooth thing was the worst and I would call that a 9.9999!!! :eek:

Bottom line is pain IS subjective.

GardeniaGirl

03-30-2007, 01:23 AM

Kira, I can understand a bit of what you go through.

I have "Undifferentiated Connective Tissue Disorder" and have extremely rare reactions to almost every medication I try.

I have yet to meet another person who is on Enbrel and all the other drugs I am on who doesn't have rheumatoid arthritis.

In fact, I have never even met someone with RA in real life. (plenty on the net though).

In real life, when I am debating about telling someone what I have, I never want to mention the word "arthritis" because the person will immediately launch into a remedy that worked for his or her cousin's sister's mother's ex-husband's step-daughter.

I am soooooo bloody sick of people who know nothing giving me advice that I've reached a point where I rarely tell anyone unless they are going to be a close friend.

When I do have to tell someone, I've gotten to the point where I say I have a rare autoimmune disorder. This effectively prevents anyone from giving me advice, while also causing them to realize that its probably quite serious and not a minor issue where I am just a little bit tired once and a while.

I don't know how my pain compares to people here. I guess I just figure anyone who posts regularly on a chronic pain forum has got to have some level of appreciation for mine, as I do theirs.

When all my anti-inflammatory drugs are not working (methotrexate, Imuran, Indomethacin, and Enbrel), the pain I feel can best be described as my body feels as if it is being boiled in oil.

It is true, absolute torture.

I think if I was ever in a situation where I couldn't be on any of these drugs (I need them all actually), I would prefer to be either totally unconscious under anasthesia or dead.

Kathi49

03-30-2007, 11:17 AM

Jena,

I just had to add to this since you listed your surgeries and it got to me to thinking of all I have had done. Here goes..I will try to put them order.

Hit by go-cart at age 12 - Compound Fracture of right arm; very messed up right leg. Probably the beginnings of things to come (arthritis). Funny I know..but weird! :eek: Loooong story.

Tonsillectomy - Age 20 - Painful, yes.

Infertility Procedures - Ages 23-27 - Endometrial Biopsy and Hysteroscopy; numerous other tests.

Endometriosis - Ongoing, probably started in my teens; ended in 2000 with a hysterectomy

5 Laparascopies - Ages 23 to 43; constant return of endo.

Surgery on Deviated Septum of the nose - Age 25 - packed for two weeks...that was pretty miserable

Childbirth - Age 27 - Preemie, born at 32 weeks and according to docs was like peeling a banana that was not quite ripe. Their words...meaning the pain would be bad. But at least I had an epidural. Carried her low; 3 months of pain had to have a Cerclage.

Hysterectomy - Age 43 - Occipital Neuralgia and/or Cervicogenic headaches begin; descent into spiney land...and according to the NS's, probably had arthritis from the go-cart accident as they saw an old, old injury; intubation during surgery aggravated all of it.

First Cervical Fusion - Age 47 I think lol, anyway in 2004

Second Cervical Fusion - Age 49; Sept. 2006

Lumbar Rhizotomy - Age 50; just this winter

Pelvic Floor Dysfunction and Prolapses - Also diagnosed in the fall and winter of this past year.

Too many procedures, meds and injections to even begin to list here.

AND A PARTRIDGE IN A PEAR TREE! LOL

No, my point is...I know pain. I was just saying in my earlier posts that out of ALL of this; nothing came close to severe pain except for the headaches. They were the worst. And I think it is because everything else I have listed here was temporary or can be dealt with. But my cervical spine has been altered forever; therefore, the pain continues to one degree or another. And I know with DDD things will probably worsen.

jena1225

03-30-2007, 01:26 PM

Wow Kathi, that is quite a history! lol.

I also had endo but they treated it with 3 months of Lupron shots once a month. You may have heard of it, but it stops your period and outs you through full-blown menopause!! :eek: And I was only 25. That was NOT fun!

Funny thing but I was serious when I said that my toothache was probably the worst pain EVER!!! lol. My filling came out and I had a hole in my tooth for a couple months (no money for dentist), so the nerve was exposed and if I ever bit down on it by accident while eating, OMG, someone shoot me!!! :eek:

My pain now is more constant as opposed to exscruciating. May I ask what you are taking for pain? I cannotremember and am too lazy to look :)

Kathi49

03-30-2007, 02:27 PM

Jena,

Well, that's why I put it there LOL! Like I tried to say before I haven't lived 50 years without some kind of crisis going on. But I also know the heartache too of wanting something, almost losing something and then an almost total loss of well intentioned plans.

Anyway, yes! Isn't Lupron just wonderful? NOT! I had ONE shot that lasted 3 months and then the hysterectomy. That 3 months was real fun LOL! Hot flashes came every 10 minutes and the headaches (not occipital) were slamming me every day. But in all seriousness my RE gave it to me to actually put me into menopause FIRST, dry up any microscopic endo, and then added back therapy (HRT) when I was done. Really, that whole ordeal (besides the Lupron mess), went real smooth. I did not have to enter into recovery and have surgical menopause me hit me at the same time. It was much easier. But I have since read about cases where Lupron has caused arthritis. I really don't know how true that it is. And I would imagine it would have to be months and months of it.

I have never had a filling come out but that has to hurt pretty darn bad! My husband had it happen to him and he was in agony...same thing happened to my sister. Geez, but to have a nerve exposed.. OUCH!!!! Now that had to have been pure you-know-what!!! I think the closest I came was when they put a crown on. Somehow or another the dentist didn't file off this one little shaving or something underneath it. So, whenever I bit down it hurt! I called him two weeks later and told him something was wrong. He freaked out and wondered why I hadn't called right away. But heck, I just thought maybe I had to get used to a new crown. I just didn't know but the pain got to me after awhile.

And last but not least...and stupid. When I had my wisdom teeth removed, of course it just left these big holes. I was not even thinking about it one night and ate some corn! OMG! STUPID! Those kernels got into those holes and it was h*#! trying to get them out. LOL

Oh, like you the pain is a constant, sometimes with the occipital headaches...pretty darn rough. But to answer you one .5 mg of Klonopin a day and right now just one 5/325 of Norco a day. They want me to take more of the Norco but I just hold off. I can lay down and rest if I need to to help take the edge off.

Kira

03-30-2007, 02:36 PM

Everyone here is in pain. Everyone here has gone through heaps of diagnostic stuff. Everyone here has conditions in addition to their primary condition that causes the pain. We all hurt. We all go through a lot.

Kira

03-30-2007, 02:44 PM

Jena,

The toothache-type pain is the stuff I am describing in the center of the parts that hurt. I think it is from the dead tissue irritating the covering on the bone, called the periosteum, and causing bone pain.

I had a really bad abscess where they left a flap after taking out my wisdom teeth. They had to reoperate on it twice. The abscess was next to the root of a tooth and ate a big whole in it. The root/nerve was exposed and infected, and I ended up losing the whole tooth. I have had other tooth pain, but that was my worst tooth pain ever. It was like the whole thing was on fire for several weeks. They would drain the abscess and some of the pressure would come off and it would feel a bit better, and then it would reaccumulate and hurt like hell. It wasn't until they found the exposed/infected root next to the abscess that they dealt with the actual pain. So I do know what you are talking about with the tooth pain and it sucks.

That is the same type of pain I am trying to describe in my body. It is that same "bite down on an exposed/infected tooth nerve" pain, only it is by my bones, underneath the layers of dead/dying muscle that feels like charley horses.

I didn't write this to be like "so therefore it is worse than other people's pain." I wrote this because, like I said before, you guys can relate to each other's spinal pain, but because no one really experiences this kind of pain I have, it is hard to explain what it feels like. But I think the tooth pain thing is a good start, because that is what the central part of my pain feels like.

Kathi49

03-30-2007, 04:25 PM

Kira,

Yes, we have all been through a host of different things which is why I wrote what I wrote.

That has to be hard to bear. :( I have joint pain from arthritis of course. But the exposed nerve root type of pain is maybe somewhat similar to what patients experience from various neuropathies when there is nerve damage, an entraped nerve and/or nerves dying back. I just mean when the this happens it can be excrutiatingly painful. And, well, the nerves tell the muscles how to work. I am just trying to make some comparisons in order to better understand your condition. :) The only people I have ever really known with actual bone pain were really people with bone cancer. Maybe there isn't any better comparisons but I am going by what you said about it feeling like it is biting down.

What helps with the pain? What meds do you have to take? In other words, what hurts or helps? What is your prognosis? I am just asking because I would like to better understand.

jena1225

03-30-2007, 05:25 PM

Yes, the nerve pain that I have at times, like right now, goes on mostly in my back, but also in my legs and feet. The spasms I get in my back are just like charley horses and are very painful...

Like right now I cannot sit still and it feels like my back is ROTTING AWAY as we speak! :(

curiousforever

03-30-2007, 05:39 PM

It's changed my thinking - because I ditch anyone who gives me crap about anything medically without having a shred of understanding about the reality of chronic pain.

I've just resigned from a few boards - cause though they are 'friends' and I've actually met a few - they don't get it and I'm tired of the flack.

Friend or not - shut your trap if you're going to just give me negativity. I have enough of that on my own.

Cause of my problems - I've never felt fully a part of the boards - not like I do here and I thank you from the bottom of my heart.

Kathi49

03-30-2007, 05:40 PM

Jena,

I am laughing...with you, not at you! My whole backside nerve pain is going right up the middle. :eek: Last night I couldn't hardly sit at this PC at all! I was just squirming as I typed. LOL

I was just going to add that part of the pelvic floor dysfunction (weak muscles and muscles that are being pulled apart), are being caused by nerve damage in the lumbar. Now, THAT took a long time to get figured out! UGH! And, let's just throw in the radiculopathy and MAYBE small fiber idiopathic PN for good measure (still not absolutely sure on that one). Ain't it fun??!!! :eek: As soon as I get the neck business settled down, it is off to PT for this other!

curiousforever

03-30-2007, 05:46 PM

My arms are killing me right now. Stupid nerves.

Kathi49

03-30-2007, 05:54 PM

cf,

I have a friend that is going through this right now. She had the ulnar nerve surgery done and she said something about them moving the wrong nerve or placing it somewhere it shouldn't be. I don't quite understand the totality of the operation. But she called the other day and told me now her neck, shoulders and arms are just in severe pain.

Anyway, I had a shoulder injection done just yesterday and it has helped a little with the "migraines" in my arm for lack of a better description. But I still have to wait and see if it is truly tendonitis or another cervical level going bad.

curiousforever

03-30-2007, 08:19 PM

The surgeries on those went fine. Nerves were good for 1 1/2 yrs. And they aren't impinged anywhere now...so don't know...

Kira

04-01-2007, 11:42 PM

What helps with the pain? What meds do you have to take? In other words, what hurts or helps? What is your prognosis? I am just asking because I would like to better understand.

What meds do you have to take? When the pain is not real bad, my fentanyl patches help. I use oxycodone for breakthrough and take lots and lots of ibuprofen. When I get a rhabdomyolysis attack, NOTHING helps except sedation. They give me a couple doses of IV morphine and then it still isn't helping much so they will add on an IV benzo for a little while, then wean the benzo and just use the IV morphine (with a PCA) for a few days, then switch over to orals and taper back to my usual doses. I take a whole buch of ibuprofen and acetominophen, too.

My non-pain meds are: Effexor XR, Ambien, Prilosec, Pepcid, Phenergan, Zofran, Tetracycline. The supplements are: Levocarnitine; CoEnzyme Q10; Iron

What hurts: The underlying problem is that the cells cannot make enough energy to function well (missing an enzyme). So, anything that either 1.) demands more energy than my cells are able to make (exercise, fever, hot weather, viral illness, etc) or 2.) cuts down on the supply of energy to my cells (vomiting and therefore not eating enough; eating the wrong things; missing doses of my supplements). Those things all trigger a rhabdomyolysis attack in me.

When the muscle cells die (that is what rhabdomyolysis is), there is this inflamed, acidic "soup" just siting there. The body sends white blood cells to clean up the dead tissue, and it gets more inflamed and sort of like pus. This stuff is all under pressure because the connective tissue compartments our muscles are in don't stretch very far, and the inflammatory response draws fluid and cells into the area with the dead muscle, increasing the pressure. So while it looks and feels like a cramp, it really isn't at all... it is just "muscle soup" under pressure. Anyway, that is a pretty caustic mix of stuff and it sits on top of the bones' outer covering, the periosteum, which has tons of nerve endings. The noxious "dead muscle soup" irritates the periosteum and creates a sensation like bone pain.

My blood calcium level drops with these attacks becasue the dead muscle tissue sucks up calcium. With low calcium, you get tetany (severe muscle spasms) and paresthesias (numbness/tingling/etc). It can mess up heart rhythm and stuff, too, but it has to drop lower to do that sort of damage.

So, there are lots of reasons for the outer layer of my pain (the Charley Horse layer): "dead muscle soup" under pressure; metabolic toxic byproducts that build up and add to the soup (things like lactic acid, which hurts); actual severe muscle cramping from the low calcium; and spasticity from my neuro issues.

The reasons for the inner layer of my pain (the Bone/Toothache layer): "dead muscle soup" right up against the periosteum, which is rich in sensory nerves. The periosteum is the outside covering of a bone. The stuff in the "dead muscle soup" irritates the hell out of the periosteum and sends pain signals.

The other thing that hurts, in between attacks, is that all the muscles that died in various rhabdo attacks (9 attacks over the past 2 yrs) seem to be replaced at least in part by scar tissue and calcifications. So they are already really tight from the scar tissue, and when they get spasmy, it sucks.

The parts of my body where it hurts are basically the large, proximal muscle groups: deltoids, pecs, biceps, triceps, rotator cuff muscles, scalenes, traps, paraspinals, lats, hips, quads, hamstrings, tibialis anterior, calves.

The WORST part of my body lately has been just medial to my L scapula, wrapping around the bottom of it and around the ribs to the front, just under my breast, if that makes sense.

What helps?
Meds help some (fentanyl patches; oxycodone; flexeril; ibuprofen; acetominophen)
Heating pads/hot showers/soak in the bathtub
Rest
Keeping a constant supply of carbs in my bloodstream so I don't get to the point of rhabdo (6 small meals, high complex carbs, low/no fat)
High-volume IV D10 infusions

What is your prognosis?
It depends on what this biopsy shows. I still have not gotten the results. They (my metabolic/genetics docs) are fairly certain that I have a problem with fatty acid oxidation. But we are not sure if it is a primary defect in fatty acid oxidation (one enzyme busted, recessive) or if it is a secondary problem with fatty acid oxidation that is happening as a result of screwed-up mitochondrial metabolism. The biopsy results should hopefully say one way or the other if it is a primary or secondary problem. The primary one is a little more treatable with dietary changes (most of which we've done already), isn't very progressive, and I could have kids if I have that one (as long as the dad doesn't have anyone in his family with this weird disorder). The secondary one (mitochondrial disease) is what looks most likely based on my clinical presentation and based on the pattern of inheritance in my family. Mitochondrial disease is progressive, gradually attacking multiple organ systems. It is a weird disease because it looks different from patient to patient, depending on what organs are affected. Basically, though, the higher energy organs get affected more and more severely over time... especially muscle, heart, brain, nerves, proximal tubule in the kidneys, liver, bone marrow, GI motility, pancreas... So....

So... the prognosis is hard to say. If it is mito (which seems most likely right now), then I will eventually have most of my organs fail. I will gradually lose more and more function. It will happen in my 20s and 30s (and maybe 40s). I know a handful of young women roughly my age with mitochondrial disease, and they are not healthy at all. One recently lost the ability to walk, travel in a car much more than 5-10 min (weak trunk control), and the ability to independently take care of herself at home. She spent months in the hospital and the rehab facility and just recently got out. Another of these young women has been in the hospital since October with one complication after another after another... Another just got back home after spending 2 mos in a major specialty hospital and is receiving palliative/hospice care; Another is on hospice care but just got readmitted to the hospital b/c of intractable seizures... Another is on hospice care at home and just taking things one day at a time.

There is no treatment or cure for mito. People take "cocktails" of supplements... carnitine, CoQ10, etc... but that is thought to, at best, slow progression. There are a few unique individuals who have true carnitine or CoQ10 deficiencies who respond wonderfully to the supplements, but most of the rest of us don't feel differently on the supplements or off of them.

So, b/c there is not a treatment or cure, the care is "supportive," which basically means treat whatever complications arise as the disease runs its course.

If you are curious about mitochondrial disease in general, this is a great site:

http://www.umdf.org/

Kira

04-02-2007, 12:16 AM

Kathi49

04-02-2007, 01:05 AM

Thank you Kira,

I now better understand what you are contending with. :( I have to admit I don't fully understand all the technicalities but it sounds pretty darn rough. I will go to the website tomorrow to read more on it. But I was curious about the Fentanyl patches. Do you have any side effects from it? Sometimes I wonder if I should try that just to avoid stomach issues. Or does it make you nauseated? And I can't take the anti-depressants or anti-inflammatories; except the latter I can take on occasion. My stomach just get so messed up so easily. I am thinking of uping Nexium.

And don't worry about the cystocele/rectocele deal. It is pretty common. :) I know it is embarassing to speak of but it is part of my issues too. Maybe if you get to feeling better you can go into pelvic floor PT. That is what was recommended to me; just haven't been able to get there yet because of the neck troubles. And chances are you may be like me, minor, yet enough to cause pressure and some constipation issues.

I would write more, but considering it is late, I need to get off of this thing. I will re-read what you wrote tomorrow and may have more questions. :)

Kira

04-02-2007, 01:27 AM

I haven't had many side effects from the patches. I was getting a lot of constipation with the MS contin, but that got better (though not gone) when we switched to the patches.

I am not sure how much the patches are contributing to my gastroparesis and my nausea/vomiting. I have had issues with nausea and vomiting since long before I started these pain meds. But I do get n/v from the IV opiates at the hospital, so it is possible that the patches are at least contributing to my n/v, even if they aren't causing it.

The only other side effect has been a minor one: I got rashes (like eczema) from the patches when I put them on my abdomen/chest. I don't get rashes when I put them on my upper arms, though. Don't know why, but I'll take it.

I was having a hard time keeping them on, so I got some Tegaderm to cover them with to keep them on, even in the shower, etc.

Mark N

04-02-2007, 03:38 AM

This thread has shown that it isn't easy to accept that others are empathetic to your pains and that even CPers can be at cross ends trying to explain our pain and how it impacts our lives.

One thing I learned through coaching football is, we can't determine someone elses pain. I had players play with painful conditions and not miss any time in practice or in games while others missed time for what seemed minor pains. The problem is that as coaches, we couldn't judge who's pain was more intense and which ones were looking for a break from practice and games. I know that I have hurt as bad and as intensely as any spinal pains when I threw my arm out. My elbow literal made me nausiated and being on the verge of unconciousness. It didn't hurt as long as my current pain or hurt as much of my body that I feel now.

My life of pain has shown me to be more considerate of others and not to judge what their pain is like. I have had too many claim I coudln't be in so much pain because I went ahead and continued to work/coach and be successful with it. I had idoits complain that I should be back teaching after fusion because I was outside or I was out walking a block.

CF, I am sorry to hear that you were doing better after surgery and now you are back to having more nerve pain again.

curiousforever

04-02-2007, 04:13 AM

Kathi,

I haven't said it before on here because it's embarrasing to me, but I have a rectocele and a cystocele. I think it is from my low muscle tone in general. The cystocele doesn't really cause me any problems but the rectocele does...

I had a rectocele repaired. I don't have a cystocele. I've heard those are fairly painless - 2 women I know who had one were walking around like the next day.

My rectocele was a pain. Pretty large one....If you ask me - it's worth getting it fixed. It's been almost 2 yrs - as I had it fixed when I had my gallbladder out....

curiousforever

04-02-2007, 04:16 AM

CF, I am sorry to hear that you were doing better after surgery and now you are back to having more nerve pain again.

I had 1 1/2 with no problems out of them. AFter 3 yrs of major pain it was wonderful!

The nerve pain now isn't as constant. I don't cry loading the dishwasher (which I used to), I'm folding some clothes, it's just a different pain....

And it's not as painful as the impingement.

So I consider myself lucky I guess....if this is luck!:p

Kira

04-02-2007, 04:45 AM

Mark,

This last time, the long response was just plain answerng the questions Kathi asked. I don't think I did anything wrong this time... just answered her. I hope it didn't seem like I "wasn't accepting empathy" b/c really I just saw that she had asked me some direct questions and so I tried to asnwer them.

Kira

04-02-2007, 04:49 AM

CF,

I've seen the procedure to repair the prolapse (in the OR, observing, as a med student) and it looks like it HURTS. It's not that bad, though? B/c I do need to do something about this... it is just that it's kind of low on my priority list right now, plus I'm being a chicken about it.

Kathi,

I don't know if I could do the pelvic floor PT or not... a lot of the time, due to my disorder, strengthening exercises actually backfire b/c they are asking my muscles to exert themselves, which can be a set-up for an attack (that whole energy supply and demand thing I was talking about above). LOL that would be a funny rhabdomyolysis attack to explain in the ER, though... they always ask which muscles are the ones affected, and I would have to say, "Ummm, my pelvic floor" :o... the next question, of course, is "How in the world did you get rhabdo there???"

Mark N

04-02-2007, 05:19 AM

Kira, I wasn't talking about anyone in specific about not accepting empathic feelings from others just that it is hard for us to accept it as we have a hard time accepting our disability. As time goes by and it gets to the point we accept it then it is easier for us to accept empathic feeings from others, especially since so few people understand what we are going through.

Reading all the post and the different stages everyone is in at this point, it was clear to me that all of us are at different stages of accepting our condition and the support we get here. It is nice to be able to come here and get the support that we don't get in our own lives just like my wife doesn't support me the way she should. She is angry at me, won't help with things that would make it easy for me [although like the other day she goes to the drugstore for me when I was in terrible pain with my BM], and thinks it is deeming to do things like helping with my feet that I have a hard time reaching. I can come here and have people that know what I am talking about from their own experiences. This place is a blessing to me and I haven't found another one that is so supportive as this one.

jena1225

04-02-2007, 09:59 AM

Mark - I have to agree that this place has also been a blessing to me. I have gotten so much information, encouragment and support that now I cannot even imagine not being able to come here. I really hope we do not crash again! :eek:

I also know what you mean about people thinking if you can do such-and-such, that how can you be in pain?? I don't actually have anyone that does that to me, but I am always expecting it, that I will not do certain things just because I don't WANT to be doubted. I guess you could call that being insecure??

I kind of do something similair with regards to my MS. Like I will not use the scooter at the store if I can walk, even if I am limping. I do not want to look lazy. Or, I won't use the H/C parking when I should (like if it's a long walk on a hot day). I

Kathi49

04-02-2007, 12:47 PM

Kira,

Thanks for the information about the patches. If they are contributing to nausea and vomiting I would probably shy away from them. BUT...I sure would like to use something like that to avoid taking pills. I will ask my PM about it. :) Also, I know the pelvic floor PT would be rough in your condition. I mean just getting there. I don't know about anyone else, but I was graded as a Grade 1; meaning surgery isn't warranted. BUT...the doc did say if the PT hurt, stop immediately and he would do the repair(s). I just haven't been able to get there from here yet. However, I do have a friend here in town who has been to the same group and she said it was amazing the difference it made. And, again, not to be gross, but part of this is due to my hysterectomy so I have to use Vagifem to keep the tissues strong. Sorry to be so graphic..but it happens; the atrophy I mean.

cf,

I wish I could get this repair done and just be over it but they won't do it just yet. It is more like pressure than pain. I am glad you were able to! My mother just had the repairs done about a month ago. The only pain she had was in the backside where they had to go in and attached the mesh I think. BUT...she was up and walking and doing in about two weeks and told me she wished she would have had it done years ago. To me, it also looks painful. But I think it would be worth it even though they say sometimes they have to do repeats.

Oh, my ob/gyn said the other day, and not to be gross, but that they were small and if I am having pain across my backside and such it is more than likely coming from the lumbar/sacral spine...same thing the Urogynecologist said.

It is always something isn't it?!!!

curiousforever

04-02-2007, 02:10 PM

I didn't get the mesh - or the pig's skin they use here!

It did hurt. I felt nothing from the gallbladder surgery....I think cause the other part hurt more. But after getting over it - it was still worth it.

Kathi49

04-02-2007, 04:45 PM

cf,

Hopefully, the PT will work. But if not, then I would love to get this taken care of. UGH...someday. :(

Stetson

04-08-2007, 07:12 PM

My life changed dramatically since my neck surgery and ongoing pain.
I have given up all the hobbies I love and all I can di is use the computer.
I miss my old life and activities and found acceptance a long time coming.
My poor wife had to live with these and been very good through it for most
part but for anyone who tells you it's not a strain on your mate they are
not telling the true!I have continued to work full time and they tried to put me on disability last year and I still wanted to work now I think it's time to
stop as I am out of steam by 10:am and I have no second thoughts this
time.My limbs are sore ,my short term memory is shot.

ErinENj

04-09-2007, 02:29 AM

I miss my old life a lot of the time, but I've also, through this pain, have come to appreciate everything so much more. Going out to dinner with my friends means so much now when it would have just been another usual activity 4 years ago and nothing special. Just having friends anymore, especially when I talk to them something like once every 3 months, is so special and I'm so lucky to have their support and understanding. Yeah, this life sucks. Beyond sucks. There are no words. But I can't get rid of it. There's nothing I can do to be able to be okay again. So I have to make the best of it and try to adapt 'me' to this. I have to adapt my life and plans to this. Everything just means that much more. For most people, and I know I'm beating a dead horse and that you all are I'm sure getting sick of hearing about this, graduating from college is a huge deal and a huge step. For me, it's phenomenal! It's a miracle and then some. No one thought I would make it through. Just last year I was told that I had to quit school of my back would just continue to get worse and who knows where I'd end up (yes, this was by a ER doc who didn't know me in the slightest!) if I continued to push. But, I am in my last 4 weeks of college. The goal is within reach. I can practically touch it! I can taste it. And then I get to go to Amsterdam! I'm really excited! And there are absolutely no words for how FANTASTIC it feels to prove all of those people who said I couldn't or wouldn't do it, those who thought I wasn't strong or determined enough to do it, and those in my own family who thought that I shouldn't bother and should just go out and get a job because I there's no point in me bothering since I wouldn't finish anyways, all of the doubters so WRONG! And I'm gonna slam it right in their face! This is an achievement for me, my mom, my docs, and all of you out there who have supported, helped, and listen to my rants through this. And it just is so unbelieveable it's really happening!

And Mark, this place has been a lifeline for me since I found it. My only regret is that I didn't find it at the very beginning. I truley believe that if I had found this place after my first spinal surgery, I wouldn't be in the position I am now. I would have gotten the information I needed so I could know the second surgery (3 or 4 years ago this month. I can't ever remember what year my second surgery was in) was an enormous mistake. This place has saved me from so many mistakes, has picked me up when I've been slipping, have helped me through some of the hardest times in my life, have helped me with meds, procedures, what's a good idea, what's a bad idea, what's worked for others, what I should try, etc. And I believe with all my heart that I wouldn't be here without this place. I really don't think that I could have made it through the past 2 and a half years since I found here without the love and support I found here, and the love and support of my mom. I seriously doubt I would have survived, that I would have lost my mind and possibly taken my own life because I couldn't deal with this. You all mean the world to me and I don't know what I'd do without you all. The 'breakdown' of the server was a nightmare and a half because I didn't have a place like this to turn. There was another board I was on, but the membership was a bit smaller, while it is a great board and I love everyone on there, there is a much different dynamic here because there are so many different people here. This place holds a huge place in my heart and I don't know how I would manage to figure out all the ins and outs of my treatment needs. And there are no words for how much I appreciate all the support and cyber hugs I've gotten over the years! :D

Mark N

04-09-2007, 07:26 AM

Stetson, I am glad you found this place. You are right about the toll it takes on our spouses. Many can't handle it and flee because all they have to do is leave us and they don't have to deal with any more. Those that have stuck by us are going through their own kind of hell.

Erin, this place is special and I hate to think of what my life would be like without the people here. The crash helped us understand how isolated we would be without groups like this.

jena1225

04-09-2007, 11:50 AM

Mark - that is so true. one of my fears is that we will crash again. I still can't believe what having you all to talk/listen to means to me. Hubby is like, "what are you always doing on there when you are not working? I'm like, talking to my friends"

It's kind of funny how we don't want to bother/burden our family and friends with our venting, etc... but that's exactly what WE are all here for. Does that make sense? lol

I also appreciate when able to see friends and family. I just appreciate there company more. I am able to laugh and forget even just for a little while. There is already a running joke about me never going anywhere (family has a running joke for just about everyone and anything!), a friend I only see at family gatherings, which can be quite often :eek: tells me everytime I ask her what she has been doing, and she alway says "nothing!". (She stays home with hers kids). So I'm like, why aren't we just doing "nothing" together?"

Sorry, I think I am starting not to make sense! lol

Kathi49

04-09-2007, 01:05 PM

Jena,

I am cracking up! Now, what were the medications you were taking again? :) Just kidding.

You sound like me. My husband does the same thing...asks me what I am doing when basically I am doing nothing. And, I say, "Oh, talking to people on this forum." He just shakes his head, laughs and walks away. But, see, you guys are right because I don't want to burden him with all my BS pain! LOL But really, he doesn't mind what I do or NOT do all day long. What I mean is, he knows I get the things I need to do done..but on my own time. :) Most of the time he is saying...don't overdo it! And he doesn't really care because he has said whatever you find fun or entertaining...just do when I feel like it! I thinked I shocked the heck out of him the other night because I said, let's go out to eat! He was in shell shock I think! LOL And then actually said later he was glad I felt good enough to do so. I just told him I'd like to do more things and I am TRYING to get there from here.

Anyway, friends? They are crazy, what can I say. So is my family. Most everyone though is still working. But two of my friends are retiring next month. It is fairly easy to get with everyone since they are so close by. But finding a day where I don't hurt is another matter. And, yep, same thing...a running joke that I can't go anywhere. But they just tease.

And, yes, you make sense. I know exactly what you mean. :)

jena1225

04-09-2007, 01:19 PM

Thanks Kathi! I am glad I make sense :D Your hubby is EXACTLY like mine! Everything yours does, mine does. And I think he is glad I have this place, otherwise he would have to listen to it all! lol Seriously, he knows this place is good for me, especially with the MS.

Kathi49

04-09-2007, 01:28 PM

Think about it Jena LOL!

Do you think our hubby's really care how much we vent on here? LOL Shoot, they probably prefer it! No, my husband will listen and is very supportive but he would much rather dwell on work or the TV LOL! I have to keep in mind that my life is in a different chapter than his. And his is different from mine since he is still working. So, I just go about life, do my own thing and he tends to other things...working, yardwork, you name it. And I save my venting for friends and here! But, but, but, if I get really bad...he's right there and ready and willing to take me anywhere I need to go.

Oh, and this is another thing. The cervical injections. I always have to have a driver. So, he is real good about that. If he is out of town or something, I usually have my mom or someone else take me. I had to laugh at him one time because he had an injection done in his back. On the way home he was driving and told me his leg was going numb. I panicked! Then he laughed and said, oh, it is just the left leg, not the right one!

BrokenBladder

04-10-2007, 04:08 AM

My hubby thinks that it's great that I have a place to go and talk to people about my pain.
He works all day and sometimes into the late evening and I know he dosen't want to come home and listen to me whine!! So I whine to you guys!! Now of I'm in bad shape he will sit down and talk to me, cook for me, or just tell me it's time to take a pain pill and lay down. Of course he's there so that I can cry on his shoulder when I need to.;)

Mark N

04-10-2007, 04:32 AM

Lisa, I am glad your husband is supportive and cares enough to be there when you need him. My wife use to exaggerate how long I was on here and complain about it but now she is more accepting of me being here.

Jena, you are making sense to me and it is nice to have a place to vent because I would be on my own other than my two kids which have been very supportive. My wife has been supportive many times but also on my case many times. Even though she has been down with lumbar pain for a week at times she still can't understand how much pain I am in because it is constant instead of a week attack and them back to usual. I am very supportive when she is down with it and do many things for her but she can't bring herself to do many things for me. I really appreciate the things she does for me but wish she could bring herself to do more. I can live without her doing more but it would be nice to be closer.

Kathi, now you and jena know you have more than pain in common:D .

BrokenBladder

04-10-2007, 05:40 AM

Mark my hubby is supportive MOST of the time, but I think it's important to point out that this really wears our spouses out. For one thing since we have CP we aren't the same person they married. Secondly I really think under some of the anger is worry.
My hubby will keep a pretty cool head with me, but then he might blow up at someone else.:(
Bottom line, it's tough on our spouses!!!

Kathi49

04-10-2007, 06:40 AM

Lisa,

Good point. I think too think underneath it all is a lot of worry. So, sometimes my husband will get edgy with me. But I also KNOW it is work related and/or worrying about me. Last night I was feeling very, very rough and even though I didn't say too much, he knew. And he offered everything in his power to help me; back massages, ice...anything to help me feel better. But I told him, there's not really much he can do, I just needed to lie down and get over myself LOL!

Besides that, this weekend was rough. His best friend died Easter morning. And he was out of here in a flash to go be with his friends wife as she was totally alone when it happened. Long story. But for the last couple of days I have done everything I can do to be supportive as he is taking this hard without really showing it. Maybe it is the military in him, I don't know. But he keeps things inside. I just know him and I know this is very hard on him. Anyway, it hit me hard too because this same person used to donate leave to me when I was so sick; I just kept seeing donated leave and could never figure out who was giving it to me. I never knew who it was until a few years later. And all that time I wanted to thank whoever it was. I did eventually find out and I thanked him profusely. But that is the kind of person this guy was...just gave to everyone without expecting anything in return.. And my husband said all day yesterday was spent taking calls from all over the world regarding this guy. That is how well liked and respected he was. Anyway, sorry for rambling. I just think it is my turn to be as supportive as I can.

jena1225

04-10-2007, 01:05 PM

Kathi - Yes, I know my hubby prefers me coming here. It is not because he doesn't care, but seriously, we have a business that he needs to keep alive :eek: and he works alot like yours.

However, when I REALLY need some comfort, he is totally there. For example, yesterday and this morning, I was I total wreck. He was about to get ready for work and I asked hm to sit down so I can let him know exactly what my fears are. He sat and listened and was so comforting. Remember now, he is former Marine, and I honestly think they do some type of Labotomy on them and wipe out the emotional part of the brain! LOL. I think you know what I mean Kathi. Every time you post, I am like, that is so us!!

You hit the nail on the head when you said "I have to keep in mind that my life is in a different chapter than his. And his is different from mine since he is still working. So, I just go about life, do my own thing and he tends to other things...working"

It helped so much because I am so down about everything right now, and he needs to know.. I have to say, a lot of it has to do with my MS and declining...

He also does drop everything when it comes do driving me somewhere, being at my DR's appt's etc..

Mark - thank you for understanding me! lol. I am not really great at expressing myself in words for some reason. Hmmm, maybe it's all those "holes" in my brain? :rolleyes:
I really feel for you when you say you get little support from your wife. I wanted to ask, has she ever gone to any of your Dr's appt's? Seen your MRI's, Xrays., Reports, etc.. I wanted to comment on that, but I would rather wait to see what your answer is...

Lisa - I do agree that is wears on our spouses, and I don't think anyone here would deny that! Sounds like your hubby does some pretty nice things for you, but I can tell he gets frustrated sometimes. Even so, I have talked to so many people on the MS forum who have husbands that do NOTHING for them! Some of us can't see or walk at times. It seems like you have accepted his "bad days" :) They need a break sometimes too

jena1225

04-10-2007, 01:07 PM

Lisa,

And he offered everything in his power to help me; back massages, ice...anything to help me feel better.

I am so sorry about your husbands friend. That must be very hard on him :( Tell him WE are thinking about him.

On a different note, the above is something our DH's DO NOT have in common! lol.

Kathi49

04-10-2007, 01:21 PM

Jena,

Okay, I was seriously reading your post while eating lunch. When I got to the part about the lobotomy, I started laughing so hard I dropped some Frito's. But my dogs got 'em. :)

Yeah, it is rough on the husbands. And maybe because they feel like they are the sole bread winner now (even though I am on a pension), they work like dogs. And I don't mean that in a bad way; but I know the "military" in them and when they get on a mission there is no stopping them. And that pertains to anything and everything LOL! And they might be emotionally blunted, I don't know. I don't really think so. I think they have just been trained to deal with stuff and that's what they do. :) I didn't say it in my last post but when I was talking about his friend to him the other day, we both actually started tearing up. My point is sometimes I think he has had a lobotomy but not really. :D

Well, anyway, I look at it as different chapters. That's not to say we can't come together and do things or go places. What can I say? He is working and I am not. Therefore, I think about all kinds of other things and his mind is back at work. But it is not a big deal. Like I said, I just go about and do my own thing.

Mark, I would be curious too if your wife has seen the reports, etc.

Lisa,

Yep! I have seen my husband blow up at other people. But usually it is justified LOL! I think I have said before that my husband used to get peeved I should say when all of this stuff began. But once he went with me to appointments and that sort of thing, he really began to understand what was happening. The ONLY thing I really hate is when he is driving and starts getting mad at other drivers. I just want to tell him to shut up and drive LOL! Geez!

Mark N

04-10-2007, 08:16 PM

jena and kathi, yes my wife has seen all the pictures, has gone to some appointments with me, and sat through all my surgeries. Her lack of support has to do with her insecurity and not a lack of caring for me. She does alot to help me but not much in a personal way. She has seen me struggle and has seen the pain I go through with BM, my spine, and all the other problems that come from my spinal issues.

Sometimes people fear for their loss so much that they struggle to care for others.

marijo

04-10-2007, 08:44 PM

I spent ages posting reply, and then lost it!!!!! I've lived with this for a few years now. During that time I've had several surgeries, and treatment, and now face another operation, to remove my bowel as I have a severe bowel disorder. My husband doesn't get involved, and doesn't want to know any information. This makes it very hard. We nearly parted company last year, but neither of us want that. We have been married for 36 years. Our children would hate it. I know that he hates the changes in our life. I cant even sit through a movie, or go out for a meal without a large degree of discomfort. He does not visit me in hospital, because he has a phobia almost about hospitals. On the other hand our children are just great. He does not visit the consultant with me. The consequence is that he has not got any ideas of what I can or cant do. There is so so much that has changed in my life. There is not one aspect that CP has not touched

jena1225

04-10-2007, 09:41 PM

Kathi - You hit it about the whole "mission" thing! But I can tell you that him being as disciplined as he is has saved out butts so many times! I honestly do not know what we would do without his "Military background"! Whew!

He will NOT give up, especially when it comes to me and my illnesses. BUT, I have to admit, it has not always been that way when it came to me. Before this last relapse I was pretty much in denial with the whole MS thing for the most part, and my pain was not nearly as big of an issue as it is now. So, he would "say" that my health was the most importnant thing, yada yada yada... But without really "seeing" anything wrong with me, it really didn't happen that way. He was an ***, didn't understand why I was so tired, etc.., but neither did I! We were on the verge of divorce. Then, he made a complete 180! (360?) ANYWAY! I guess my point is that sometimes there is "something" that can turn them around. Not always.

Mark - There was A LOT of resentment in my marraige for the longest time. I honestly thought I hated him. I had absolutely no desire to do anything for him. No cooking, showing him any type of support, nothing! Sounds a bit like your wife? That CAN change, but I do think it has to be something she wants to change. It just seems she might have some resentment for having to take on more responsibility or something. But, I am sure you have thought of that one! :rolleyes: I really hope she comes around, as you sound like a wonderful guy :)

Marijo - I am sorry your hubby is not very supportive :( I do hope he comes around!

Mark N

04-11-2007, 12:02 AM

marijo, I can feel for you as our spouses have their own issues to deal with and it doesn't always allow them to help with ours. It is good that we both have our kids to turn to and I can imagine how much worse it would be if my wife didn't do the things she has for me.

CP does have a major impact on our lives and on the people around us. Not only do we feel abad about not being able to do the things we would like to do but we feel bad because our spouses can't do what they would like to do and have our company. I know that my wife would love to have me with her at certain events and the separation it causes when neither of us want that.

I am sorry your husband can't get past his phobia to help you through this CP. I know it is much easier when you have someone to share this with and your husband doesn't give you that. Like it or not, you are going to have to rely on your kids for support and not look to your husband for care or understanding.

Mark N

04-11-2007, 03:38 AM

jena, thanks for letting me know about the turn around in your husband [it is a 180 because a 360 would have him right back where he was lol]. I know my wife has to want to change and I am hopeful that as time goes by she will change. I do have to say she is much better now than a year ago.

jena1225

04-11-2007, 10:10 AM

LOL, thanks Mark, my Math skills are depleted! :o The fact that your wife is better than last year IS a good sign. Honestly, my dh and I have had issues since we married 10 years ago! Long story. But I guesss by the grace of God?, I stuck it out (it WAS all him!) He seemed to change for the better like every 5 years. I still don't know how I did it b/c I am not a very patient person, and I am ITALIAN for crying out loud!, lol.

It really did take a bad MS relapse for our relationship to get where it is. I calmed down, he grew up! and so on.... I really try to pinpoint the most obvious thing that made him change, and I think it's just that even though he was a pompous ***, :rolleyes: he really did love me, and I think seeing my whole family join together, it opened his eyes and he realized that the real thing is here, (had sort of an "easy"? ride until last May) and just "saying" he is soooo there for me, he has to put it into action. Drive the kids to school, cook, clean, etc... you get the point.

I have to say, he meant what he said, he has never faltered or complained.

And Mark, After reading everything you write, I get the feeling your wife loves you very much, (as I am sure you already know that :rolleyes:), but just has yet to realize that although life may be not as she expected or "dreamed" about, that grass on the other side is usually not as green as it looks :rolleyes: . Maybe you can ask her exactly what she feels like she is missing? One of the best things I ever did before ALMOST leaving my husband for the 2nd time, was to lay it ALL out on the table, no holds bard! I held back nothing. Told him exactly how I felt, what I could not stand about him, and what MUST change for us to work. Whether it was hurtful or not. No name calling or anything, just plain honesty. I could go on but I won't (let me know if you want to hear more, lol) It was the best thing I ever did.

I am not what you would call a "religious" person, maybe spiritual, but I will say a prayer for you guys :)

Wow, I really babbled!

Kathi49

04-11-2007, 11:33 AM

Jena,

I read this and started laughing; especially the pompous a** part!

Don't feel bad, I laid it all out there too! And, like you said, no holds barred. Anyway, change won't occur unless you ask for it or even demand it. And, speaking STRICTLY for myself, I am not into this psychological game of trying to figure someone out. It's like this, you can't FIX someone unless they are willing to work on themselves. And if they won't, then for me, that's it. And trust me, I got to that point and I laid it on the line. And I am far from perfect. But to put up with remarks because you are sick or whatever is just BS! So, I did as you did...I just put it out there! Personally, if I get worse or whatever, and he can't handle it, then go. That is precisely how I feel about it. Hopefully, he wouldn't or won't. But to be honest, I don't think I would want someone around that couldn't handle it.

BUT...like you said, after I had my say, he turned around and the docs helped with that too. I know it is hard for the spouses to cope but NO ONE has to put up with snide remarks and such. Frustration is one thing and I DO understand that. But the other...uh uh! And, btw, I am Irish and have no patience either LOL!

Mark N

04-11-2007, 12:25 PM

Jena and Kathi, We had a big blow up back in 1995 and I laid it all out and took a tough love approach. Now I am blamed for it even though I have tried to explain to her what I was trying to do but I am blamed for something that I didn't do but for her it is reality. Jena I know she loves me and has said that a time or two [different than the usual I love on the way to work or getting off the phone] but she alwys threatens to leave and divorce me but I know she does it because she knows how important it is to me to stay married and work through our problems. Like Kathi said, until she is wiling to work on her problems she will always be this way but I can get through it because I know the motivation behind it.

Thankfully we have had some good times and it isn't bad all the time. I just wish she appreciate the things I do for her the way I appreciate what she does for me.

Our disabilty has such an impact on our spouses and they don't have the advantage of having CP that takes most of our focus. We can overlook things because our CP takes so much of our attention but they only focus on what has happened to their life because of our disability.

jena1225

04-11-2007, 12:42 PM

Mark, I left one very important thing out. When you have this "truthful" conversation, it must NOT be in an emotional state. I actually scheduled a day and time for us to "meet", about a week after I was "ready to leave". That way, I was calm, and had done alot of thinking.

Also, I appreciate that you may not be in the position to do so, so this may not be an option. But, since you sort of mentioned it... the other thing I did was tell him that this was IT. After expressing myself and of course listening to him! I let him know that we do not belong together if we are so unhappy. No blaming, just tha facts. In 6 months if things have not changed, we need to go our separate ways.

BUT, even though I was scared to death to be single, with a child (only 1 at that time), could be disabled at any minute, I was NOT "down" at that time, and I did have my family to help.

I guess my point is, you REALLY have to mean it when you say that a separation is in order, it can't be just an idle threat. I can't count how many times I have done that, lol Kathi?? lol

Kathi49

04-11-2007, 01:49 PM

Jena,

You are right. You have to MEAN it and you have to have a plan in place.

And, I did the same thing once. Met on neutral ground so we could talk.

But the bottom line is...you have to stand your ground sometime. I don't know when that will be for anyone. I just know that I eventually had to do it and took a big risk in doing it. But Jena, it is like you said, once you stand up to it, some kind of change will take place. It might be working things out or it might be in leaving.

Anyway, my husband is much better now like I said. There are still times he gets edgy but it is usually work related. I can deal with that. :)

jena1225

04-11-2007, 02:18 PM

Right, and it is ok for them to get edgy, they are human. But when they seem to not be accepting it and giving the support we need, then I think a serious talk is in order.

Mark, forgive me if I am getting too personal. I will not be offended if you do not feel comfortable answering any questions - just say so! :)

I just wanted to ask if you have ever confronted your wife in this manner. Like, took her aside and told her you can tell she is not happy, seems resentful, etc... and asked her directly if she would rather leave? That you would rather her do so if that would make her happier, then stay and be unsupportive? THAT IS ONLY IF YOU ACTUALLY FEEL THAT WAY!! lol

Tht was another thing I told my hubby before all this. He was not very good at helping with the kids, house, etc.. even though he worked alot, but so did I! I told him I would rather be single and NOT expect help, then live with him, expect it, and not get any! Same thing about getting affection, support, etc...

Makle sense? Geez, I hope I asked that question right Mark, and you don't get upset :confused:

Mark N

04-11-2007, 02:53 PM

Jena, I told her back in 1995 that this was it unless she was willing to have counseling with me. She made progress and got on medication until 2000, by then her meddling sister [a pharmacist] convinced her she didn't need to be on that kind of medicine and she stop taking it. We went downhill from there. It wasn't until this past year she has gone back on an AD and realized she needed to be back on an anti-anxiety med. The problem now her doctor won't prescribe her a med. She came home for lunch today and said she may have to find a different doctor, on that is willing to treat her anxiety problem. If we get that straightened out then things will be fine or at least they were last time. At least this time I think she has learned not to talk to her sister about her meds but they are close so she may let the cat out of the bag. If she does, I hope her sister understands now that the meds are necessary.

If this wasn't happening it would be time to sit down again and have the 'talk'. I know I am not perfect and I want her to be able to communicate to me what is bothering her. I have worked hard at not responding to her emotional out burst that are so hurtful and it has helped so far. I know we wil make it because we won't give up.

Kathi49

04-11-2007, 04:41 PM

Jena,

Okay, I am going to take back all the nice things I just said about hubby. :D
Just kidding. Okay, here we go. He is running some errands for me and that is absolutely wonderful (I forgot 3 things at the store yesterday). I asked him to pick up these things and WROTE them down. Anyway, he just now called me and I swear I am going to brain him LOL! And this WHOLE 10 minute conversation was about what kind of Spaghetti Sauce he was supposed to get! I CANNOT even go into all of it here, because I am laughing too hard. All I can say is that at the end of that conversation I just wanted to yell, "Whatever kind!!!!" Poor guy, he was trying but it was just one of those SIMPLE conversations that just went round and round and round. :) He was actually naming ALL of them...reading them to me off the shelves LOL! And when I said get XYZ kind, he would come back with, are you sure you don't want the ABC kind? Mind you I am not complaining, he was trying...but there ya go...the military in him...trying to be precise. But then told me I needed to be more specific. Okay, next time I will REALLY spell it out out and he will be taking a letter to the store instead of a list. :D

Mark,

I hope your wife can find a doctor that will treat the anxiety. Was the anti-depressant not working? I just am asking because the AD's actually made me worse and they were prescribed for the nerve pain, like Cymbalta, Elavil and such. I do know there are some milder anti-anxiety meds. And, I think you are doing a good job by NOT responding to the emotional outbursts and walking away. But sometimes it IS best to just walk away because eventually they tire of complaining to blank walls. Anyway, I hope she can get all of that taken care of and get back on the right meds.

jena1225

04-11-2007, 06:54 PM

Kathi, I just can't stand it anymore! We have long lost twins I swear! He does the exact same thing, no joke. But when he is listing off ALL the brands, I am telling him to shut up! but he keeps going, :rolleyes: lol.

He really did do a 180. Wheon he was not at his best, he really just had tunnel vision on work and "getting us into 6 figures!" lol. He did have some issues that he need help on, but he is such a great man. I don't know what I would do without him :)

Mark - I agree about walking away. If it takes 2 years, so be it, nut eventually it will catch on. That is just my opinion :)

Kathi49

04-11-2007, 07:22 PM

Jena,

LOL! I know about the tunnel vision too! I can go downstairs in the morning to get coffee and there he is with that darn Blackberry typing a slew of emails! But he works very hard to solve the issues that are going on with all the services and NOT just the Army. Sometimes I want to take that thing and sling it LOL! Like, dude, get a life! LOL!

But you're right I couldn't do without him either. In about 5 years he will retire, so that will be good. I think...LOL! All I know is that he will have to stay busy or he will go nuts. Or, I might be totally wrong and he will just want to have fun. I think for now, work is just very stressful so I am supportive because I used to work on what he is working on now only I was in the weeds compiling and analyzing that same data back in the day while he is solving the policy issues. Anyway, I just know what he is up against looking for standardization! We had a long conversation about that the other day. So, see, I do stay in the loop in some regards LOL! I might as well have kept on working. :D But that is just my way of being supportive because I know he needs to vent.

Anyway, the walking away deal. I just mean that you have to be careful how you pick your battles. Sometimes the small stuff is just that. It is sometimes just not worth coming back with a retort...because...why? I mean, who cares. That is why the word WHATEVER comes in handy LOL! I mean why start an all out war over nothing. BUT...if it is serious and continues, then, oh yes, I will speak up and so will he. But for the most part it is just trivial crap that doesn't mount to a hill of beans. Just that edgy stuff I was talking about. :) And I think most marriages are like that. Or, I could be wrong. But I have yet to see a perfect one. Honestly, I think it would be weird if we totally agreed on everything...every day! I just mean we are two totally different people...it is not like I am a clone of him just because he is my husband. :)

Oh, this is funny. My friend once told me that her husband said, "You know, we have the greatest marriage, we never, ever argue!" And she said, "_____, that is because we NEVER TALK!" I busted out laughing when she told me that. Because really, deep down, she was growing more and more resentful until I told her he wasn't a darn mind reader and she needed to have a sit down with him. And, well, after they had their little talk things took off from there for the better.