stable or declining?

[GardeniaGirl]

I know that my condition is progressing....almost imperceptibly day to day or week to week. But year to year, it is very obvious.

I am able to get "plateaus" of stability when a medication cocktail nails my symptoms particularly well.

Just curious about other CPers - do you feel that your condition is stable and that your meds help maintain that, or is there a decline?

GardeniaGirl

[Kathi49]

GG,

I have multiple conditions but I would have to say stable for the most part. And I am only saying that based on MRI comparisons. Seems like I am a wreck but maintaining being a wreck. :D Oh, but with the exception of the pelvic floor. PT begins soon for that. I don't know what is going to happen with that. The Uro doc said if the pain is unbearable, stop, and he will do the repairs. Meds? They keep the pain manageable but do not obliterate it.

[Mark N]

Your title is a good description of me. I am declining but holding my own as long as I can. My wife says I am much worse and in some ways I see that but in other ways it is hard to see it. I am just trying to stay stable and put of the decline as long as I can. Unfortuantely mine is due to deteriorating spine and it is still deteriorating so it is a matter of how much it is effecting me.

[jena1225]

GG, yes, I feel as though I am on the decline. Some of my pain is from spasms and nerve pain due to my MS. That feels like my spine is deteriorating as we speak, so I don't know if it's decling or not, but it's worse then it was 3months ago. Can't do anything about that though - just take the Baclofen is all I can do (already at 80mg a day and won't be able to tolerate any more) The lumbar went downhill very quickly just since November. No injury either, so I can't imagine what that could mean.

Although I can't see how pain meds could maintain any declination, I am sure glad to have them! I would think only actual surgery could do that.

Mark, you said: "I am just trying to stay stable and put of the decline as long as I can"

I am curious how you are able to do this, but please let me know!!

[Kira]

Declining. My disease is progressive, affects multiple organ systems, has no cure or even treatment, and will ultimately kill me (unless I get hit by lightning or something first).

This has been hard for me to admit/accept. Part of me is stuck on the idea that if I just work a little harder at PT, nutrition, sleep, etc I will feel better and be able to get back out there and live my life. But the rest of me looks back and how fast I have fallen over the past couple of years, and the differrence is striking. I look at other young women I know with my same disease, and they are all getting so much sicker, too.

I hate this disease. Mito sucks.

[debhun]

Well It looks like I am declining. Getting to the place I don't want to go to the Drs now. Just in the last month I have had things to come out of no where and hit me like a tun of bricks. I have my own self thinking I have gone nuts.LOL But what is going on is that I just have a bad Dr and all he see is FM and that is all. Do you know that when I was in the hospital a few days ago that he didn't even come by to say hello. That is bad. So Yes I am looking for a new Dr. It is hard cause I live in a very small town where every one knows every one. But I feel a little better today. Still sore.


(((((((((((HUGS TO ALL)))))))))))))
Deb;)

[GJZH]

I think the lumbar is stable...but the cervical spine is a toss up...My hands started to go numb again...and the other day they started to cramp and turn in ....so that scared me...The cervical spine is degenerating I think...They will want to remove the pelvic screw I think though from the lumbar...and I am not crazy about that idea and for now want to just leave it where it is...I will put up with the pain..I am used to the pain..Aren't we all?...

[GardeniaGirl]

I am glad some more people posted on this thread....although I am sorry we are all facing this type of problem.

I won't attempt to speak for others, but for myself, the progressive aspect is what is hardest for me to cope with. If my symptoms were more stable, I could adapt around them and plan for the future better.

An analogy I like is imagine yourself standing on a tropical beach. You have a large umbrella, a comfortable chaise lounge, cold drinks, you are enjoying your friends. If it gets too hot, you head under the umbrella, maybe take a dip in the ocean.

But, several miles off the coast is a huge tidal wave that will surely destroy everything when it hits.

You see it, but can do nothing about it, and you can't leave the beach.

That is a bit of what it feels like, for me, to be living with this progression.

I keep trying, but many days, I feel like, why bother doing anything. I can't envision my future at all, even though I will continue to live with this disease for many more years in all likelihood.

I don't have children, so I can't shift my mental focus onto them.

Every day that I notice any evidence of progression, it hits me pretty hard emotionally.

[jena1225]

GG, that is a perfect analagy, and fits me well. Even, or especially actually, with my MS. Each time a get anything new at all, however small. And it's not always so much the actually problem, as it is the reality that things just keep coming, and probably always will until I am in a wheelchair ALL the time. In one year I went from go, go, go, to I barely leave my house anymore. If I do, my wheelchair is in the trunk, forearm crutches in the front seat.

And your statement here: "I keep trying, but many days, I feel like, why bother doing anything. I can't envision my future at all, even though I will continue to live with this disease for many more years in all likelihood". is exactly how I have been feeling for a while now, with the exception of a few days here and there.

[Mark N]

Jena, trying to stable as long as I can is just a way to stay positive in my case. I don't have any control over my condition other than to take my meds on time, avoid activities that hurt my spine, and to avoid stress as much as possible. But really, I am just doing some self talk to keep myself positive.

[jena1225]

Mark, I know, I was making a funny :D was really just hoping you had a secret! lol

I just have a hard time being serious ALL the time :o , but it seems to be getting me in trouble lately :eek: sorry!

[Mark N]

Jena, we all need to lighten up now and then so joke away and keep us smiling.

[jena1225]

Yeah, but maybe I am just not funny! :o lol

Thanks again Mark for keeping an open mind, and accepting my apology for misunderstanding and potentially offending you :)

[GJZH]

The most difficult thing for me is that my son's wife just had a baby on May 31st...I am very happy about the baby...but I cannot carry the baby as much as I thought I "might" be able too...It would be too dangerous...I sit and they hand the baby to me...When my arms are tired, they come and get the baby from me...The baby is a beautiful baby boy....8lbs.15ozs.,21 inches long...He is a big baby...I had hoped to be able to help more...but the pain in my lower spine will not allow it and I just do not trust my arms and hands...I have been dropping things with the right hand...

When I look at the baby it makes me feel like the tidal wave has hit...I would love to just pick him up, but know I cannot do it..I am too afraid of dropping him..since I know the pain in the lower back is too intense and the arms are not reliable...

My daughter-in-law did give me a wonderful gift though...She knows I missed seeing my own children being born...and I was in the process of switching from teaching to nursing...I had hoped to do labor and delivery...so she allowed me in to the labor room and I was able to see my grandson being born....What a wonderful event that was! I do feel blessed to experience the birth...

[Mark N]

It is good you were able to see the event when you became a grandma:D . You will just to have to be the person that plays with him on the floor. I know it isn't like picking him up and holding him but there is plenty to do on the floor or him lying on the bed or couch. just find different ways to interact with him as he needs his mammaw.

[curiousforever]

I think it's progressing. Mainly due to I'm starting to have nerve pain in my other leg and foot. My other hand starts clawing up from muscle spasms at times.

I'm stable on the meds - they work well enough that I can function unless it's a really bad day....

[GardeniaGirl]

jena and kira - your posts always really resonate with me.

The three of us have entirely different diseases, and yet, it seems we are each facing very similar issues with them.

And we are all having a hard time coping mentally.

I think any person would - who is faced with continual downward decline in functioning and health - and all three of us are in a time in our lives when we should be building, creating, growing, producing -- not declining.

Thanks to everyone for posting on this thread, I hope there will be more posts - its a fruitful discussion for me to read.

[Mark N]

I have given up planning for the future and just happy for today. I take each day at a time and try to do as much as I can even though it isn't alot. It took my wife a long time to see what it is like for me. I was yelled and screamed at along with snide comments about how about using an alarm clock, being useless to society since I am disabled [funny my income is higher than her's but I guess I am useless], why can't I get someone done since I am home all day, etc. After four years she has come to accept it but I don't know if she can really deal with it or leave me after my son graduates. I don't worry about it since I can only deal with today. If she doesn't like it she can leave but she is getting a bit better about it. Somehow the "I love you" doesn't sound as sincere as it used to be.

I just wish she was as understanding about my issues as I am about her own demons. It would be great to be cared for and have some affection that I don't initiate but I take what I can get any more. Like I said, she is getting better so I have hope that it will be better down the road. She can't beat me up as much as my pain so her efforts to be mean and uncaring are lagging way behind the pain. I wish I had as good a chance to improve physically as there is that my wife's medication can improve her anxieties and fears.

[jena1225]

Mark, I know you are in a lot of pain, you probably have gone through this, but just in case it may need to be looked at again...

is there anything you can do to maybe take some of the load off her? She works fulltime, right? Maybe she doesn't want to ask for help, but is getting overwhelmed/overloaded, and feels resentful? Even if you hired a maid or something? Just a thought :confused:

[suede]

Huh! I try to avoid thinking about this question but it is always upfront anytime I try to do something or not.
I know my spine is getting worse as well as my arthritis, I had an MRI of the T spine not long ago and it said it is progressively worse then the last one, I knew that.
One of the things that makes me feel so lousy is it's like the Dr's have just given up on me and it makes me feel like doing the same..

Gloria, I understand about the grand baby, I have 8 (6 biological) and 5 of them have been born since my spine problems and the others aren't old enough to remember for anything but the pain and the mama with a bad back..
It makes it hard though I try to give them other things to remember me for then just the pain, I have been making them all handmade quilts and working on each their own life journal with pictures and holidays no matter how the pain I bake with them..

Linda

[Mark N]

Jena, she feels overwhelmed but we can't afford to hire a maid nor would my wife be comfortable with one. I cook every dinner meal and help out as much as I can. I know she feels overwhelmed but she really doesn't have that much to do outside of work. She has been this way most of our married life she has just gotten nastier and worse the past several years. It is about the same age her mother had a nervous breakdown and was in the hospital for two weeks.

I hang in there the best I can and other than not having a close loving relationship I would like to have at this point we are getting through this. I hope she can return to a loving partner some time in the near future.

[curiousforever]

Aww Mark - that makes me so sad for you.

[ErinENj]

I'm a bit late in responding to this thread too, but really wanted to get my thoughts in here. I've been trying to get the chance to sit down and catch up on all I have missed over the past couple of weeks, but things have been somewhat insane with trying to get settled in after our trip and my parents are starting to get on my case about job hunting, so I haven't had the time I need to really get caught up and give myself the time to read through each thread in the way they deserve.

For me, there's no doubt in my mind that my pain condition is in decline rather than staying stable. It seems like every year or so, I get hit with some major flare up or further injury to my back that increases my pain to a level I didn't think it could get to. I always thought that there was this level of pain that was the max any person could deal with, a level where a person would say 'this is the worst pain I could ever imagine or could ever deal with.' But, I was wrong. My last really serious flare was in February 2006. Before that, I thought I had hit my x-level where my pain was the worst it could ever get. But, when that happened, my levels shot up so rapidly and so intensely that my x-level nearly doubled. I've never experienced that sort of pain. I'd never had a situation where I literally could not move in a certain way because of the pain that movement caused. Until then. I'll never forget trying to get out of a chair at my kitchen table after eating dinner with my parents and not being able to because the movement caused such intense and blinding pain. It got to the point where I had my mom pulling me from the front and my dad lifting from the back to try to get me up, but as soon as I hit this one point, I started screaming because it was so intensely painful. I doubt I will ever forget that. Still, I thought that it was just some muscular problem, that a week or two of major doses of muscle relaxers would set me back to right. After the strongest dose of muscle relaxers my PCP would give me (the strongest dose that he thought wouldn't kill me), and still nothing changed, it became evident that this was more than simply muscular, that something had changed in my back. The only question then was what had changed and if there was anything that could be done for me to deal with that change. My second visit to the ER was when they finally were able to drug me up enough so I could lie in the MRI. I'll never forget what the ER doc, who didn't know anything about me or what I was doing as far as school was concerned, told me after the MRI films had been read. He walked into the exam room and said, "you have no choice. You must quit school, or else you will continue to do more and more damage to your back." He wanted to admit me to perform a fusion. That was the first time I refused treatment and told him that I wanted to go home.

I ended up in tears when I saw why he told me that. I had herniated my two bad disks again, this time to where there was almost the same amount of disk matter herniated as there was in the disk space, and neither amount was close to what should be in the disk space. Then when I picked up the MRI report a few days later to fax it to my spiney, I got another hit when I read the phrase "obliterated S1 nerve root." I learned later that it just meant that they couldn't see it because there was too much other crap in the way, but it scared me to death. I saw everything, all of those things I had hoped for in my future, slipping away in one phrase, again.

After that flare, I went back to see my spinal surgeon (different doc than my primary spinal doc) to see if there was anything he could do. What he told me was one of the hardest things I ever had to hear from a doc. I had thought that this while pain nightmare would be over as soon as I could just get the bad disks replaced. I thought that that surgery would mean the end to all the meds, to all the bad days, to all the restrictions, and an end to all of the modifications of my dreams to fit my pain. He said to me that the ADR wasn't going to be the answer. At the very best, with the very best results, I'd be lucky to have my pain decreased by half. A quarter was probably more realistic, but still not promised. He told me, "Erin, I'm sorry, but you will be in pain for the rest of your life." It still hurts me emotionally just to remember the moment he said that.

I know my condition is declining. I know that my pain will continue to increase if I continue to push and fight against it. There's no undoing the damage I have done to my spine, but there's nothing stopping it from getting worse. Just today, I had another flare, and for no reason. I was having trouble functioning today and the only thing I can think of as being the reason is that we had the remnants of Tropical Storm Barry move over us today. I hope that's it. Today was a day where even a short time on my feet was too much. And I know that a year or two from now, I'll be wishing my pain was like this. And I know that I will need ever increasing amounts of pain meds to help manage the ever increasing amounts of pain. The only thing I can do to attempt to make my condition stable is to stay in bed, not do anything, but even that's no promise. I did that after my second surgery, but I was still back in my ex-spiney's office 4 months out with worse pain than prior to surgery and with more problems in my spine than those I had started with. There's nothing I can do. So I decide to push. I know my pain is just getting worse and is only going to keep increasing, so I might as well have that increased pain from doing something that I love and something that I want to do, like working as a journalist, covering the important stories of the day. Then, at least I can say I did something.

And, I always have the hope. The hope that things will stay as they are, the hope that this pain is the worst pain my body and mind can handle, that I'll never have to deal with the feeling of helplessness that I get after my pain increases, that I'll be able to make my dreams come true. And even the hope that someday, maybe, there might be a procedure that will cure me. But for right now, I just have to hold on to that hope and see what tomorrow brings. I'm sure my condition is steadily declining. I know and have been told some day I will not be able to push anymore. I've been told that someday, there won't be a med at the strength I need to control my pain available to me. But until then, I just have to keep my head up and keep doing what I can before that happens. I have to hurry to get everything in so I make sure I know I have it done and off of my list of dreams before my condition completely defeats me.

[jena1225]

Welcome back Erin! I have missed your posts. Glad your home, and I hope your trip did not cause you too much pain, but I am sure it was worth it!

[Kathi49]

Yes, welcome back Erin!!! :)

I feel as you do; just push past the pain. BUT...there are times I still have to get off of my feet. And today, I would just kill for an injection of some sort in my lumbar/sacral area. I have a lot of questions for my PM on Thursday because I just CANNOT tell exactly where this is all coming from. One minute I think it is the Facets, the next minute maybe Piriformis and then who knows for sure if it is the disc bulge or not. The only thing I DO know for sure is that I don't have Stenosis. And maybe it is just the nerves regenerating from the Rhizotomy. I know I caught my breath last night because the pain felt like it was right in the coccyx and I almost couldn't stop it. But a hot bath calmed that down. But I am going to have to be clear cut or show him exactly of where I am speaking of. The PT for the pelvic floor begins on Monday. I am NOT so sure how that will go! And I am not really looking forward to it. But I have spoken to others who said it helped them tremendously. So, we shall see!

Then there is this knee thing going on. Normally it calms down in the summer. But not this year! So, the whole left leg, hip, knee, ankles and butt cheek hurt pretty bad. Lying down makes it so much worse. I seem to do better if I just keep walking. UGH! Now, let me go do some ironing because at least when I am standing up, it isn't that bad....the butt pain I mean.

[GardeniaGirl]

Erin - I just wanted to say I can really relate to your post-- especially the aspect of constantly pushing yourself to fight against the pain.

This is basically what my approach has been as well.

My disease started after about 9 months into my graduate program. I basically dragged myself through to the end, and finished with a Master's degree. (my thinking at the time was, "I've paid for half of this, there is no way I am quitting without my diploma!")

That was back in 1998.

I have continually pushed myself since then.

Of course, I have had medications that have greatly improved my functioning - without those, I would have been bed-ridden 10 years ago, when I was 28 years old. Truly, without Enbrel (my miracle drug), I would have been almost totally bedridden, wasting away (my disease causes me to lose my appetite and the pounds just drop off me).

Anyway, I admire your inner strength to keep going after your goals despite the pain. I can identify with that.

Thanks for sharing on this thread.