Baybreeze

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ms_west

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You wrote in another thread:

Hey Pep, havent seen you in a few days, I hope all is okay! But I see you've made some progress walking, so that is awesome, I guess you are still feeling somewhat better.

I wanted to respond but did not want to interrupt your thread.

To make a long story short, I have been struggling with finding the right balance of what I can do physically and what my body will allow me to do without an increase in pain.

My pm has strongly encouraged me to push through my pain and walk. I can walk 200 ft without tears. YAHOO!! However, when I added 5 minutes on the incurabent bike and pelvic tilts per my pm doctor, my back has decided to protest very loudly and now we are experiencing a ugly flare in pain.

I am finding this stage in my spinney journey to be very difficult. I just don't know how people learn to accept that one has Failed Back Syndrome or that this is the best it will get.

I am also dealing with the psychological aspects of grieving my loss at not being able to do alot of things with my children, not being able to drive, go to amusement parks, go hiking and camping, etc.

I feel very out of place on the board - I love you all, want to be here for you all, and will continue to be here for you all - but I feel like I am at a different place in my recovery - there is no more hope to get better and pain management is my future as far as my back treatment. I find it very hard to be positive all the time and I don't want to be negative in anyway for the newbies and those facing surgery. Does that make sense? Does anyone else feel this way or have I simply lost it?

Anyway, I didn't mean to rarable but this is what is going on with me these days. I am adjusting to this curve ball that the LORD has thrown me.
 
Diet sent out a post for you and Moldova, guess you didnt see.

Oh diet I fully understand where you are coming from, please please post away you are not sending negative thoughts to others, it is facts, some sail thru this others dont and everyones spine is different. You said you are finding difficult the aspects of grieving the loss at not being able to do things with the kiRAB........... oh Diet that is my biggest guilt, and grief, and I cry bitter tears over it. I spent yesterday on the floor from 2 O'Clock on warRAB just in pure agony, what brought it on ....... dont know................ I then had to say to my son dad would do the homework and maybe drop you to school in the morning, if I cant................... I cried and cried and I told my husband he should have kept the receipt when he married me......... he said love they dont return faulty gooRAB when the gaurantee is up !!! (i am 38 !!!).

Diet you said you seem lost on the board, I feel lost at this stage with all the new people and posting and not getting any answers and all the people I know on the board either have left as they are better, or maybe just like us........ slightly giving up.................... you are in my thoughts.
 
Pepper, it is soo wonderful that you are progessing in the walking area, I really think that is a big accomplishment for you, considering your pain. Not to mention that you've found a doctor that is working with you, really trying to help you control your pain as best as possible. That is another big positive. Just think of how much you've already been through and your struggles with pain management and other doctors. You've already come a long way in fighting for yourself, like you always say, being your own advocate. Not giving up on yourself, and finally you have found a more compassionate doctor. That in itself has made you a stronger person and it will help you for the rest of your life in all facets of your life.

I do know how depressing it can become, I have been there before myself and that was before I had any back problems. I've had many why-me times, crying, feeling helpless and hopeless. In my early 20's it was awful when I had flare ups of all kinRAB of joint pains, rashes, weird symptoms, extreme fatigue, etc...I've had to leave jobs b/c of it, I even ended up in financial ruin b/c I had no health insurance. But somehow, someway, I was able to get through it. And I actuallly think that maybe going through that earlier in life might have helped me to cope with my current problems. Even when my back got so bad, I did get depressed at times, even broke down one time at my rheumys'. I was so frustrated and couldnt understand what the heck was going on with me. I had possible lupus & maybe fibromyalgia and then my back was goind downhill quickly.

These days, though, even though I have worsening pain & other symptoms again, for some reason I am not usually feeling depressed. To be honest, I really cannot explain why. I really do think my cat helps me..and that I'm out of work & home all the time I see my baby neice frequently. Making her laugh makes me laugh & smile and keeps my mind off my other problems, at least whilel Im occupied by them. Maybe this helps me in some way. Ohh , another thing, when I was young ,even when I was feeling okay, I was a big worry-wort. I worried about everything, I worried about the work I did. I always worried about something and had to have everything perfect. Then one day, for some unknown reason, I just got sick and tired of worrying. I told myself it was not worth it. Of course I do still worry about some things, but I cannot let it consume me. LIke now I'm worrying abit about finding a job with a visible physical problem. When I cannot walk well, I see people staring at me, etc. And Im sure you and others on this board know that all too well. But right now I am doing what I can. Someone, dont know who, actually referred me to Vocational Rehabilition at Unemployment. I won't get into all the details, but I have an appt next week to start a process to see If can qualify for any job and/or training help due to my physical problems. Ahh, now i'm going way off course. I think I need training in writing! LOL


It certainly makes alot of sense to me as to how you are feeling regarding your family & social life and posting on here. I think, though, that you have alot to offer the newbies. Many times they are looking for advice & moral support. You certainly have alot of advice and support to offer. I do understand that sometimes you might just not have the mental energy to post. I know there are times I read posts & want to reply, but just cant find the right worRAB to say. But sometimes when I post things & they thank me for something, it makes me feel good as well. I do like to help people however I can. Since my way of helping is physically limited these days, at least I can hopefully help on here. ANd also get the same in return when I need it. It's all so hard, but no matter what kind of posts you put on here, it may still end up helping someone. People do need to see all the sides of things.

So if you can somehow, try to focus on your walking since you are doing beter with that. Small steps are still able to get someone a long way. And never forget that I and our fellow spineys are always here for you no matter what. ;)
 
Hey Pepper,
This wasn't addressed to me, but I wanted to respond anyway. Sweetie, I sooooo know how you feel! I'm very much where you're at in some ways: knowing that I won't ever get any better than this. I know my problem is different from yours; I don't have failed back syndrome. I just have a failed back, period. My surgery was successful, but I have continued to deteriorate just the same. I will be on pain meRAB for the rest of my life. The difference for me is that I've had a long time to get used to the idea of not being able to do things with my kiRAB. I've been mostly the cheerleader on the sidelines for their entire lives. That's okay! They understand I can't do a lot of things, and just being there is what's important. I sure wish I could be an active participant, but that's not what God has given me. I do know your pain with that, but like I said, I've had longer to accept it. What's been harder for me is the acceptance now that I'm not going to be stable, I'm going to continue to get slowly worse, and that's what brought me to the breaking point three weeks ago. I finally crawled out of my denial, admitted that I wasn't handling it well, and made an appt with my family doctor, who shares my beliefs and is a gem of a doctor. I thought we could have a sober discussion about it, but as soon as he walked in and said, "hey, I don't think I've seen you since your last surgery! How did it go?" I just burst into tears and proceeded to cry for the next 15 minutes as he tried to sort out my turabling worRAB. This is just so hard! But he was very supportive and said chronic pain is a huge and valid reason for depression. He put me on Cyrabalta, and at this point, three weeks on it now, I'm not quite sure what to think. I feel rather normal, which is a good thing, of course, but I don't feel particularly "happy," I'm just not thinking about all this. So is it working, or have I just been able to vent and cry and that's what's helped me for now? The jury's still out, I guess.

But anyway, I just want to give you a big hug (wish I could in person!) and tell you to hang in there and keep working through it. There's no quick and easy answer, nothing pat to say, but you'll see as you go on that you can still be just as much the mom as you've always been, just as loving and encouraging, just as active, but in inactive ways, if you know what I mean. You'll learn what your limits are and how to plan things to maximize your ability to "be there." You're going to slowly accept it, and so will your husband and kiRAB, and they won't love you any less just because you can't shoot baskets with them! Your body's not cooperating, but you're still YOU on the inside, and that's what's most important.

The best advice I can give you is to give thanks in all circumstances. That really does go a long way! Sweetie, know that I (and others here, too) do understand, that you're not crazy, and that you are loved! You will persevere!

Much love,
Emily
 
Diet, I am so sorry that you are having such a rough time. I do undertand that the changes we undergo in life can be so darned upsetting..but we have other routes we have to follow..it may not be the ones we planned. Your children will still love you..you may not be able to run and turable with them,,,but you can read and cuddle with them. They will remeraber that was how you shared yourself...they will not care that your back didn't allow you to jump up and down...they will remeraber the soft touch, the little pat, and your voice speaking with them. You are such a wonderful person...you have offered such great comfort and advice to others here...and it means so much. Life changes..no guarantee that we get to do what we planned....but it doesn't end...it just goes another route. I am so happy that you are doing well in your walking...it's hard right now for you..but you sure are progressing!! You are such a valuable asset here...we all love you...please take care...and have a better day...night!


Round....I did the unemployment retraining thing years ago...it is hard at first, they keep having you coming back..for interviews, tests, and more tests..once you are accepted...well..you are off to college..or whatever you choose for retraining. I also received my unemployment checks while going to college!! It was wonderful...I do hope this works out for you..good luck..

Emily....you are such a sweet person...I guess we all have to learn how to deal with our individual pain..you alway seem to do it with such warmth & grace...I hope you rest well tonight...have a good day tomorrow.


Leslie
 
Round1, I am sorry that I missed your thread. I know Modolva would have responded too if she saw the thread.

It is nice to know that you have the same feelings about the board. I think we do have a lot to offer others on the board but it is hard at the same time to be positive especially when ones surgery was unsuccessful or the healing process has been prolonged.

I almost feel like I no longer have a back problem, I have a Chronic Back Condition and there is a big difference.

I think part of my problem is that right now I am struggling to accept this final diagnosis and as IBAKE&PRAY would say I am allowing myself to blubber for a few days and then I will have to dig deep within myself to find the strength to pull my big girl panties up and get on with life again.

Baybreeze – you are right. I do need to recognize that I have made progress. I can walk down the driveway 200 ft for the first time in over 2 years. I was just really hoping that with this last surgery I would have gained more progress. I can’t thank you enough for pointing out that progress because sometimes it is hard to see it when you live through it each day. No matter how small the progress, it is still progress.

Emily, your post touched my heart and must admit I sat and had a good cry which I desperately needed after reading it. I know from our posts that we have a lot of the same values in regarRAB to raising our children with Homeschooling; therefore, your post to pulled at my heart strings and mean’t a lot to me. You are right, I do need to give thanks for all the moments that I do have with my children that many parents never have the opportunity to experience with their children. I mean after all how many parents dissect frogs with the children??

The biggest problem is finding that balance of what I can and can’t do and accepting that balance. Right now, it just seems a bit overwhelming. Also, the pain mgmt battles have been challenging with this long term pain medication. One has to be so careful that nothing is said or can be construed as drug seeking or a violation of ones pain mgmt contract. Thankfully I have the support of a wonderful husband, many frienRAB on this board, and my new found frienRAB on the pain mgmt board to get through these troubled confusing times.

Just know everyone that I do care about each and everyone of you and if I don’t post as much it is not because I am not thinking of you and off enjoying life somewhere on warm beach with diet dr pepper in a tropical cup with one of those fancy straws – it is probably due to the fact that I have nothing new to report and/or I am simply having a blubbering day or two.
 
Diet good to here from you pet, and I know its a struggle, and a long hard one that you feel like just giving up and say lord just take this pain away from me and give me back my life..........

Emily you made be cry.......... and a much needed one to, thanks,,,,,,,,,,,, i know its true and my son says we have the best hugs and kisses dont we, when I snuggle down next to you on the floor or on the bed.... then he told me I was the best baker, I had made jelly !!!!! which was boil kettle and add water to it, and into fridge...... but he didnt know....... !!! so I was super mum to have made jelly on the bad day that I had !!!

i feel I am getting more and more depressed, I went to the dr and nuraber of months ago and I tried cyrabalta....... and after one tablet 4 hours later I was spinning, feeling sick........ all the next day.... this is the second anti-D I have tried and ended up like that. I basically couldnt function, only stay in bed and feel I was on a boat, then my back was worse from the bed..... i couldnt eat either for the 3 days...... the dr. said i just really reacted badly to it.......... so i am now afraid to try anything else.... He said that feeling should leave after about 3 weeks........ but I couldnt cope with the 3days not to mind 3 weeks of it.... I think all that would be left of me would be bone.

Emily think you have the post mixed up about retraining etc.... that must be someone else post or maybe round2s.... I am in Ireland so things are different here..... and I am far far away from being retrained........ maybe to stay up for the day would just help me,
 
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