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ONE year ago I logged on to a lil forum... SH

virginiapvvirginiap Posts: 508
edited 06/11/2012 - 7:52 AM in Matters of the Heart
One year ago today... I logged on to a little forum... Spine Health!!!

I just wanted to THANK all of my SH friends for being there for me over the past year. I just realized I have been a member for 1 year today! I wish I could say funny how time flies… but it hasn’t. It has been one of the roughest; NO it has been THE roughest year in my life.

I sit here and think how much I have endured, pain, testing, drugs, fusion, more testing and procedures and I still can not believe this is my life. I never signed up for this, I never wanted this. Don’t get me wrong, I know NONE of us choose this life, but it’s always someone else not you, not me, you know what I mean???

Although I have suffered from chronic back pain since 2003 and was told I HAD to have surgery since 2005, I was able to keep it at bay with alternative treatments and for the most part it worked. I had epidurals that had provided me wonderful relief sometimes I would even forget about my pain, I got used to it and if I wasn’t having an episode, I was “normal”, I worked and played and enjoyed life. It was sooo good, I wish I could go back to those days. I know I can not and I also know my journey is far from over.

I guess there is a kind of bliss is coming to terms with your limitations and disability. I still can not fully comprehend that my surgery did NOT “fix” me and in all actuality has made me worse. I mourn my prior self and my life and career. I know I am blessed to have a husband to care for me and two healthy children, but I am so sad (pity party time… sorry) that my once high energy, type A, outgoing, life of the party self may never come back.

Don’t get me wrong, I have NOT given up hope, I have just decided I WILL NOT play the “date game” any more… you know the game, ok I should be better by Nov 1, Dec 1, ok how about Jan 15, for sure by April 1…. I guess I am not a steak and when I’m ready, I will be ready. I have driven my self crazy trying to FIX myself on other peoples time lines, NOT working for me. I am a fighter and will continue to fight to get me (or as much as me as I can) back.

As for my job, thank God, I have not yet been let go and thankfully I had short term disability and I also have long term disability. It is not even half of what I earned working, but again, I thank God daily for those policies. I know so many don’t have this luxury and for that I am grateful.

I keep thinking WOW 7 months, I haven’t worked in over 7 months. I have slowly removed myself from most of my friends, they don’t get it, they can’t understand what happened to me, (I can barely understand) who this new person in my skin is????… I never felt so lonely in my life, if it wasn’t for this forum, I don’t know how I would have gotten through this darkest time of life. It is an odd feeling that you can so quickly become non existent to others, like co-workers especially, people I spent 50 hours a week with for 6 years… It’s like I was never there…..

Nobody really wants to hear how I feel, nor do I have the desire or energy to tell them, so I guess part of my non existent status stems from me, being honest here. Only you guys KNOW, only you guys GET IT, get ME. Even my husband, I hide things from him all the time (about my pains) I mean he sees, he knows, I just don’t go into all the details all the time. When I think about all the crazy pains I feel in all the different places, I think to myself, my lord, girl, imagine what others would think if you said this sh!t out loud. Thank goodness I have a CP mental health counselor!

Ok, my post is all f the place, like my pains…. So I will wrap it up and just once again THANK YOU for being here for me, supporting me, providing a shoulder, a laugh and all the OMG I am not the only one, I am NOT alone moments!

Thank you from the bottom of my spiney heart!

Virginia
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Comments

  • j.howiejj.howie Brentwood, Ca., USAPosts: 1,732
    Welcome to the lousy life of Chronic Pain. To sad, to bad, But were all in this together!
    good luck, Jim
    Click my name to see my Medical history
    You get what you get, not what you deserve......I stole that from Susan (rip)
    Today is yours to embrace........ for tomorrow, who knows what might be starring you in the face!
  • So true!
    Thanks Jim!
    Hope you are feeling well today :o)

    V
  • have a healthy,good strong fighting spirit and that is what will get you through this long battle
    keep your mental health , heathly as the mind is the greatest power you have to cope with all this awfull stuff, we spinys endure

    i said before awhile ago, that yes, i beleive it takes another spiney to understand this awfull spine journey, with the many facets it brings

    i agree, having SH, helps us connect with others who do "get" this

    its hard, exhausting, frustrating, upsetting when we try to talk with non- spineys....

    so many times i just dont, its not worth it when you hear some of the comments,its isolating and i certainly understand

    virginia, i too, so wish i could go back to being normal, non spiney, i never thought this would happen, and ive been dealing with this for 25 years

    battle on my friend
    hugs
    flower(wants to wear her high heels and umm walk a long way in them)
  • Thank you for your beautiful and inspiring reply Flower!

    I wanna wear my HEELS too even for a little while. .. some day soon, right!

    Hope you are well today sweet flower!

    V

  • I haven't worked now for three years,& feel like I'm just a drag on society having to be supported.
    Yours friends & family lose patience,& think your being a bludger.All the while ,you suffer constant aching.
    Cyber Hug to you mate,some of us REALLY DO UNDERSTAND.

    On a Humour side of things ,what is it about high hells that you ladies like so much ,LOL>-I don't get it,LOL.

    Mike.
    P.S.---- Have an awesome day & know there are many of us out there that do know that your probs are REAL.
    Do all you can to make this day special-you deserve it.
  • soon, yes virginia, we have to keep our hope up

    mike, they make most of us girls FEEL good, feminine and stylish and well some outfits just need a pretty pair of heels.....

    cause not great for our spines, but does wonders for our emotional well being

    flower
  • For your kind words. I hear you about that awful feeling of uselessness : -( it's sad I've worked my butt off since I was 13 and I am now 43, that's 30 years! I paid my dues and am not looking for a pass. If I could go back tomorrow I would, I love working & I excelled in my career and always gave 110%.

    Perhaps some day (sooner then later, I hope) I can return to work in some kick butt heels!

    Flower you hit the nail on the head with why we girls need our heels!

    V
  • For my first two fusions I didn't know about sites like this - so I was in freak zone for most of all that. This site aside from support helped to educate me on spine issues, and too made me be more proactive in my care, so became the research nut! Now most of this isn't Greek to me, and I can go into procedures, tests, and surgery with my eyes open vs squeezing my eyes tight and hoping for the best. With that said, I've had my down times, new pain I didn't understand, or changes, and folks on here having been down that road gave me great insight as to what might be going on. :)

    Like you've discovered, friendship and understanding (they get it) was and is great. My hubby is really wonderful, as is his family, but I still don't let on a lot of when I am hurting, or outside of my hubby, they don't know what medications I am on, and I don't discuss the medications with them. At our family reunion last year, I was amazed how many "spineys" are in my hubbies side of the family. Snicker...so I fit right in! Sad huh?

    I'm the helper type, and another thing that is great about this site, is I can give support and help others with their questions. It not only many times allows for the new or old member "not" go through the freak zone I went through, but it is something I enjoy (helping), and it takes my pain down a notch or two - so beneficial both ways. Happy Anniversary!! (G)

    Brenda
    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • You are indeed a helper! You are always there to offer support, encouragement and or advice. Thank you we are so lucky to have you!

    V
  • Happy Anniversary V, not your best, but perhaps one of your most 'learned' experiences as far as medical ones go..or at least I hope it is. I hope you don't have to learn too much more in this area. I hope the worst is behind you and that the best is yet to come.
    People ask 'how are you doing', but they either don't want, or don't even wait for a reply before changing the topic, and it's just as well, most days we probably don't have the energy to tell them.
    I never really thought of it as being someone else though, or wondered why it was me, I always wonder why when those terrible things happen to other people why I am spared. I think I feel lucky in so many respects, but that is probably because of my childhood. Everything seems so great now and I usually feel so blessed. I worked ever since I was 14- so a year after you, and I worked for everything I had. Not working since 1996 has me feeling..both lazy and lucky if that makes any sense. I hope this time off of work is enough for you and that you can heal enough, so that when you do go back to work you are stable and pain free-or as pain free as possible.
    It's likely you will be a new person when that time comes.
  • Ms. Virginia,

    Thanks very much for your kind words. I have gotten support, advise and help here, so what's that phrase? Ahhh... "Pay it forward" :)

    Tis my pleasure and honor to help you and others Virginia! *HUGZ*

    Brenda
    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • Yes, Robin I would love that! Just gotta finish peeling all these broken layers on me to find her!

    You are right, sometimes reading the posts here I too feel blessed things could in a second be so much worse and for that I do thank God. Even though I am suffering I can walk and I still have hope that I can be better. I know now I will endure pain for the rest of my life and thats okay, I just need to get stable, you know what I mean. I need balance! I'm tired of trying to figure this puzzle out, but I have no choose. Yesterday I had pm doc, rheumatologist & lab; today cervical epidural.... its exhausting! I have to forge ahead and pray for healing to take place.

    Stir crazy with the 4 wall syndrome!!!!

    Hey Brenda, I love the pay it forward thing! Its a wonderful mentality and its what makes you so special.

    Robin you seem to always know what to say!

    You are both veterans in the war of pain I thank you both for giving us all hrre a part of yourselves.

    I pray you two wonderful insightful & inspiring women are well this evening! <3 <3

    V
  • Hi Virginia,

    I'd rather stick to being a military veteran vs pain! (G) Usually my neck and back (and thoracic) fight for attention, but I bent wrong a bit ago getting something out of the frig, and the back has been winning... argh!

    No position is comfortable of late. Sigh... I think on here, there are so many with whatever pains they have, are here for all of us. :)

    Brenda
    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • sorry you are having a flare up :-(
    I hope it passes quickly and then your spine can pick the next attention grabber! but hopefully you get a break in between. Sticking to plan A right... thats the plan!

    Hey I went to rheumatologist yesterday and he is running a lot of the blood tests you will be getting (and then some)5 long viles of blood drawn, no biggie, my heart keeps pumping more, right!
  • Hehehe....I hope life stays on plan "A", but its been 3 weeks on the back, so something changed.

    I think I will go for my MRI's and blood work next week, or very early the following week (like Mon or Tues). That will give plenty of time for all the reports to come back before I get zapped on the 13th! (G) Please let us know what your blood tests reveal. I know for me, much is to "try" an isolate my Neuropathy...Did your doctor state why you needed blood work?

    Brenda
    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • Oh I'm sorry, I didn't mean that I felt blessed in the area of people in pain...lol. I meant worldwide lmao. My mind was taking me to other places where folks have less.

    In pain I think of us as equals, as all pain being subjective we can never know if someone has more or less, not that it matters. To me pain is pain, and anyone in it deserves the very best of lifes gentle gifts or rewards, whatever that may be to a person.
    Drs appts are exhausting, even one in a day wears me out and seem to have the affect of sucking the very best out of me. My PMDr seems to understand this and for that I am so grateful, but most other Drs seem to think of me being in their office as a one sided event and have no idea what it takes from me. On the other hand, it is often the only time I get out, other than grocery shopping.

    Spring has sprung. Leaves finally popped out on my late blooming maple, all the others have been out for awhile now <--just threw that random thought in.

    I too am sorry you are having a pain flare Brenda. How long do these flares last before we begin to wonder if they are a new normal, or if something new is going on. I hope it calms down and soon!
    Be well.
  • Checking for autoimmune and inflammatory diseases as well as some basics. 11 specific & comp metabolic panel. ... hopefully I will get a call tomorrow with good news.

    I don't blame you for going sooner for mri you know your body and if something has changed I'm sure you can tell (hugs...I hope its not anything too terrible). Go away mean back pain!

    Hey Brenda did your Neurolgist tell you to cut back on your lyrica and or muscle relaxers prior to your "zap" next week. I only ask because it came up with mine that certain meds can alter results, I know you have a good relationship with your Neurolgist and just wondering if mine is inline. ..???

    V
  • No sorry needed. I understood and I was just giving my perspective on how I feel blessed. I've been self dumping ever since my failed nerve blocks. But I'm shaking it off. I don't want to live in self pity especially when I do have so much to be thankful for even though I am in pain daily, hourly and by the minute. You are right, pain is subjective but i would so love one of life's gentle gifts to be LESS pain.
    .. or perhaps I can learn to be more accepting of my new life. There's got to be some peace with that????
    Enjoy your spring and blooms! New life new beginning. Nice reminder isn't it, after the cold harsh winter, the spring flowers always come back!
    Warm well wishes Robin!

    V


  • Thanks Virginia,

    I'm beginning to think this flare is a 'new normal' for me. It use to be if the back acted up, I could arch or curl my back a little and I would get a little bit of relief. That trick isn't working anymore. I hate to say it, but I actually hope the MRI validates there is a change - for some reason we spiney types need validation of this junk! (G)

    Cool! We can compare blood notes when the reports come in! I have no problem with needles, so blood work is a breeze. I hope yours come back to help your doctor get answers too Ms. Virginia. *HUGZ*

    Brenda
    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • Robin said:

    Drs appts are exhausting, even one in a day wears me out and seem to have the affect of sucking the very best out of me.

    I too am sorry you are having a pain flare Brenda. How long do these flares last before we begin to wonder if they are a new normal, or if something new is going on. I hope it calms down and soon!
    Be well.
    Robin,

    I don't think some of these doctors get that "exhausting" part on our parts. If my appointments are close by, not so bad, but if I am left in the waiting room for more than about 30 minutes, it ramps up fast. On one of my appointments they made me wait almost an hour. I alternated standing, sitting, and too, leaning on the wall! By the time they called me in, and I was sweating I hurt so much. This shocked this doctor? What they haven't seen someone hurting so bad they end up sweating. I didn't want to tell him what the next response would have been had it been much longer. (G)

    As for a flare (for me anyways), once it is there for 4 weeks, it's a change. This has been steadily increasing over the last month, and is now pretty well constant. I almost fell in the shower yesterday - kind of put a good scare in me. That's never happened before with me.

    It changes though. When my C6/7 went with instant weakness and burning pain, I knew that wasn't a flare. So I guess for me, it depends on the types of pain or symptoms combined that tells me if there is a change, or I just overdid and my body is spanking me! (G)

    Brenda
    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • Howdy Virginia,

    Fingers crossed you hear good news - and too more news to help zero in on your body so he can help you more. :)

    Nodding...I decided I need to move the MRI's up.

    For my NVC/EMG testing I've been told that the Lyrica won't change the 'nerve response' as it is changing in your brain 'what is pain' but doesn't affect the function or status of the nerves. Muscle relaxers or narcotics, they prefer you don't take any for the test period. I've had a lot of electrical studies, and I haven't seen a difference from "with" Lyrica and "without", as the nerves status isn't affected. I hope that helps. *HUG*

    Brenda
    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • OMG!
    I can't believe this wonderful thread full of messages from wonderful inspiring women that actually say your fondest wish is to WEAR HIGH HEELS! My pain doc looked at ne so strangely when I said those exact words. I had a Private Benjamin moment (if you don't remember the movie it starred GoldieHawn. Go rent it.) where I told him "i want to wear high heels. I want to wear sandals & walk on the beach. I want to shop at the mall!"
    It was too difficult to explain it to him. But you! All of you get it! It's a helluva club we belong to, the dues are painful. But tonight you made me laugh and shout Amen!
    Oh yes laughter is the best medicine! A positive attitude is the most importantattribute for successful healing. Faith lifts us up.

    You go girls! One day we will wear those heels - if only to try them on. I swear (like Scarlet O'Hara - with apologies to Margaret Mitchell- with God as my witness, I will never wear clogs, Crocs or ortho shoes again!

    Maybe I got a little too carried away just now about not wearing sensible shoes, but I had spent time this afternoon virtually shoe shopping. I wasn't looking at anything that vaguely resembled at practical shoe.

    Thank you for giving a great ending to my day!
    Blessings to all,
    Pat
    Pat Gibson
    L5S1 ALIF 2-22-11
    Now L4 Retrolisthisis
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