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    Old 07-23-2012, 10:27 PM   #1
    SunshineKitty
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    Post ACDF anger/frustration - normal?

    This may not be the proper place for this, but I don't really know where to turn, and I don't have anyone to talk to about this right now, so here we are...

    I am so full of anger & rage right now that I'm not sure what to do with it - my normal personality is fairly laid back, happy go lucky, go with the flow, glass half full, everything works out Pollyanna-ish, but now.... I'm angry about everything!
    I'm mad that I'm 33, I've have had major 3 level ACDF surgery leaving a massive scar (over 3 inches) across my neck, and will be having at least 2 more major surgeries (Lumbar fusion probably L2-S1 and at least the right SI joint, possibly both)
    I"m angry that I can't sleep in my own bed with the man I love, instead I'm stuck getting what little sleep I can while sitting in a recliner.
    I'm ****** off that I've already missed nearly a year of my "normal" life - birthdays, weddings, the births of children to family and friends I love dearly who live in other states. I'm angry that I haven't been able to visit my nearly 90yo grandmother & may not be able to give her a hug again before she passes.
    I've lost time at work (and may still lose my job), I've lost promotions, raises, and huge opportunities, vacations, time with friends, family & loved ones. I've lost the ability to live my life on my own terms - I'm not even allowed to drive right now!!! (several weeks post ACDF - I know I'll probably get it back, but still).
    I'm angry that I've transformed from an even tempered, happy, positive, confident, cheerful overachiever , to a woman who is a mass of insecurities, & wonders what her boyfriend could possibly see in her gimpy self. I've gone from yoga 5x/wk, ballet isometrics 3x (or more)/wk, walking the dogs 3-5miles most days, working full time, cooking elaborate meals, running all of our errands, keeping the house clean, managing a busy social schedule, etc. This weekend we went to a birthday dinner for a friend on Saturday evening, and I'm still paying for it with pain and meds. I can't walk our dogs - I'm not even supposed to take them out for a quick pee! I've gained 70lbs, I have next to no patience, and while I try to keep telling myself that things are going to go back to normal, I'm terrified that this is my new normal.
    I'm also mad that my finances are completely *** up now - my LTD covers 60% of my income (pre OT, of which I worked about 10-20h/pp), and i have to pay full insurance premiums, etc out of it, so it's more like 35% -40% of my previous income...I have huge medical bills, car payment, rent, etc etc etc - I am blessed with a wonderful, supportive boyfriend, but I'm terrified he is going to decide that this is more than he should have to deal with and will leave - I wouldn't blame him if he did!

    I'm hoping that all of this anger and frustration is a result of the surgery & anesthesia, and it will go away soon, but I'm scare that this is what my life will be like from now on.

    How do you do it? How do you handle all of the changes in your life? How do you handle the Long Term Disability if you're lucky enough to have it, and still pay for your medical care & rent/mortgage/car payment? How do you fit "fun" stuff into your budget, and how do you determine what your body can handle???
    I have a claim pending with the liability carrier for the property mgmt company right now - I have no idea how that will go, but I do know that we won't be able to settle anything until after I've hit max med improvement which could be a few years from now!!!

    I guess I just need to know how you all do it - I know some of you have been here & dealing with this for a long time.... how do you keep going & keep your relationship going when you can't be intimate (and if you can, please please please tell me how! It's been almost a year & I miss it so much - we tried once & I thought I was literally going to die from the pain)

    I'm sorry if this is all TMI, I'm just having a really hard time today/tonight/this week & I guess I just need someone who has been here to hold my hand & tell me it's going to be okay.

     
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    Old 07-24-2012, 08:58 AM   #2
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    Re: Post ACDF anger/frustration - normal?

    Omg what you wrote feels like it should be coming out of my mouth with things that apply to my life. I want to know the same thing. Where did it all go wrong and who am I now because I am not the vibrant person I used to be. I too feel like I will never be the same from my cervical issues. At least we have this support group here... Hugs to you. Keep pushing on..thats all we have

     
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    Old 07-24-2012, 10:07 AM   #3
    Scrappylucie
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    Re: Post ACDF anger/frustration - normal?

    Sunshine Kitty,

    You have gone through a lot of changes and still going through some, vent away!
    It's healthy to feel a sense of loss or grief over what WAS your life prior, have you been keeping a journal ?
    It's a great way to let it out and really helps when you can go back and read what you felt on a paticularily bad day and measure your progress that way.

    I haven't been through what you are dealing with but have dealt with the feeling that I was no longer ME, not in control of my life anymore,
    I had cervical cancer in my early twenties, and can relate to many of your feelings, a good friend suggested writing in a journal , and I have been ever since, it does help, as does talking about it, try not to let those feeling eat away at you, try not to let them define who you are,

    I read your post and could feel your pain and hurt, it really moved me,
    Sending you good energy and virtual hugs :-))))))

     
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    Old 07-24-2012, 03:02 PM   #4
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    Re: Post ACDF anger/frustration - normal?

    Hi Sunshinekitty.
    Many of your frustrations are what I am going through too. I, too, am anxious about will come along but just take it slowly. I find that thinking of the negatives makes it worse.
    Remember that 99% of fears never happen (-:

     
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    SunshineKitty (07-25-2012)
    Old 07-25-2012, 03:00 PM   #5
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    Re: Post ACDF anger/frustration - normal?

    Thank you - all of you - for responding. There's a part of me that knows that this fear, frustration, anger & depression is a normal part of the process that goes along with major surgery & illness, but that doesn't make it easier to deal with! What does help is knowing that I'm not alone - that there are more of you out there who are dealing with the same/similar feelings & fears.

    This isn't something most of our friends/family members can understand or relate to, 99% of the population can't really relate to this, no matter how emphatic they may be they can't really understand what it's like to have your life turned upside down & shaken until the change falls out of your pockets unless they've experienced it themselves.

    I called CareBridge (a service my employer offers) & scheduled an appt to speak with a counselor, and also received a call from my insurance company offering a phone consult with a counselor as well, so I'll be speaking with at least 2 counselors in the next week, and trying to navigate my way through all of the changes.

    Last night I had a little break down & spent about an hour crying and ranting about all of my fears to my boyfriend - I am so blessed to have this wonderful man in my life - he loves me. He really loves me. The weight gain, the lack of intimacy, the irritability & anger & mood swings - NONE of that has changed his feelings for me - he's actually proud of how "well" I'm dealing with all of the changes, the pain, the whole situation....huh?!? OMG he thinks I'm dealing with this well?!?! lol lol lol lol lol

    I need to keep reminding myself of how blessed I am to have this wonderful man in my life who loves me for the person I am underneath the weight gain, the pain, the anger, the meds, and the fear. I also need to remind myself how blessed I am to have friends who love me for me, and how little it matters to any of them that I'm no longer able to go out dancing, that I can't dog sit for them, or bake specialty cakes, or do any of the things I used to do, because they love me for WHO I am, not WHAT I am/what I was capable of doing for them.

    I'm still a bit of an emotional wreck, but I know that things are going to get better, I'm going to work through this, and I'm going to come out of this as a stronger person. I'm going to talk to the counselors, keep writing in my pain journals, and come back here when I need more support & reminders that I'm not alone in this journey.

    Big gentle hugs & healing thoughts~

     
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    Old 07-25-2012, 03:33 PM   #6
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    Re: Post ACDF anger/frustration - normal?

    I'm glad to hear you are going to meet with a counselor. This was very helpful for me as yes...it is a lot to process when your body is not cooperating with you! LOL..

    Having these type of surgeries and spine issues effect so much of our life and I agree...friends and family can only do so much and they try to be sweet...but it just helps to let it all out here and with someone who can provide you with coping tools.

    I've been at this for 11 years now and had my first fusion at 33 as well! So I truly get where you are coming from...

    I have had 3, two-level cervical fusions and the last one they went in from the front AND the back to really put in plates/rods/screws. I also still have two herniations in my lumbar region and two in lower cervical and thoracic but will only do another surgery (as I did the 3) when there is absolute possibility of paralysis and the Dr. says it is emergent.

    I did photography for my hobby...so I had a Nikon with long lens around my neck all the time! (probably contributed to my disc issues sadly but I wouldn't trade that for anything!)

    The one thing I have done though is speak with my Neurosurgeon and PM and ask what would actually cause me more injury....not more pain...but what could physically cause paralysis....

    And they pretty much said riding on roller coasters...(which I also LOVED doing!..LOL)...but that everything else in moderation is ok to do once in awhile..

    So I still sneak out and do some of the things I love every so often and just deal with the pain. I just buffer in a few "down days" to recover and get back to my normal 5-7 on the pain scale...

    But I figure I am in pain every day so I am tired of not doing things that bring me joy once in awhile. So I go for that ride on the motorcycle which is one of my all time favorite things to do (as a passenger)...I do hiking..and yes...I love dancing too!...

    Now granted...I can't do this every week or even every month....but I refuse to give it up for good. I will deal with the pain as the joy/memories it gives me is worth it.

    Again...there is no doubt that my life is forever changed and I am not the same person and can't live the same life...so believe me...I totally get it...

    I even had to finally give in and file for disability last month. I just can't handle doing my job full time or even part time. It takes a lot of planning to even get out and get groceries.

    And even after all these years...I will have what I call my "come to Jesus" moments...LOL Where yes...I cry and feel sorry for myself for a few hours. I only allow myself to do this a few times a year though as I try to stay as positive as I can.

    For me....my ex husband was just not good at handling someone who lives with chronic pain so this unfortunately was one of the reasons we are divorced. I did find a man to date for about 6 months (5 years after my divorce) who was so wonderfully sweet, caring, and empathetic about my pain...So I know they are out there and it sounds like you are with one of the good ones!!!

    So right now it's just my great doggy and me And I try to get out each day and go for a walk with him which not only helps me physically but emotionally. I also switched to eating all Organic...this has helped tremendously with my energy levels. This along with the walking has helped keep my weight at a healthy level.

    Do you have a good PM Dr. who is working with you now? Sorry if I missed this somewhere...

    Just wanted to share that we are all here to support each other and it's so nice to have people who "get" it..

    Sending some gentle hugs (( ))

     
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    Old 07-26-2012, 11:33 AM   #7
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    Re: Post ACDF anger/frustration - normal?

    Hello
    I totally understand your frustration, anger and grief. I was very active before my surgeries. I loved dancing, every water sport there is, high ropes courses, skydiving and parasailing. I worked on a boat during the summers which was awesome until I got hurt.
    I have felt the same way you do, I actually was able to get on ssdi due to the neck diagnosis. It doesn't help though when my lifestyle had to change to a more sedintary role. I must admit I got depressed and that made it worse, I should have talked to people about how I felt emotionally not just pain wise.
    Now, although I can't work, I do get out, volunteer and don't feel as though I as a person changed, just the things I did changed and the things I do now I like just as much as the things I did back then.
    Hope you continue to let us know how you are doing.

     
    Old 07-29-2012, 05:43 PM   #8
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    Re: Post ACDF anger/frustration - normal?

    I can completely empathize with the financial situation. I used the last bit of my savings two years ago helping take care of my mom.

    I have not had any health insurance since 2007 after my divorce and can barely scrape by the cash to pay for my medicine each month. Thankfully my PM Dr. only needs to see me every 3 months as I've been going there since 2006.

    I even had to go on food stamps starting last December. Never in my entire life would I think it would come to this. I have tears streaming down my face just writing this as I haven't told a single person. None of my friends and most of my family (except my mom) knows. It's embarrassing and humiliating to me.

    Like yourself...I've worked since I was 16 years old, I was also a volunteer firefighter for over 10 years, as well as I've spent most of my vacation time when working doing mission trips with my churches youth group around the US and Africa.

    Things just started to fall apart after my last fusion surgery as I was also diagnosed with a pituitary brain tumor. I just could not continue to work full time..I kept thinking that I could take some time off to recover and then be well enough to start up again. But living off my savings only lasted for a few years and then when my mom got ill and needed help financially, it ate up everything I had. I have sold pretty much everything I owned minus my laptop as I've had this for years and it's only worth about $150 and it gives me a link to the outside world.

    And as I wrote on my last post...I finally gave in and filed for disability last month. My Dr. has been telling me to do this for the last years but I just kept fighting it thinking each night I'm going to wake up the next day and be all better!! My PM is the only Dr. that I see and I haven't gotten a MRI in all these years to know what the tumor is doing or how bad the rest of my spine has gotten as we know for sure I had 3 more severe herniations back in 2007.

    Sorry for rambling so much....I, like you, try to be positive most of the time. I try to see light within the darkness....And as I've said..you are very blessed to have a wonderful man who loves you!

    I just wanted to say that I truly understand how much the financial burden of all this takes such a toll mentally. I would give anything to be able to afford insurance but even with the exclusions for my spin and tumor due to pre-existing conditions...they wanted to charge me over $2000 a MONTH!! That is just insane...And not to be political...but for me, I pray extremely hard that the health care act stays in place as I can hopefully buy into a cheaper insurance plan that is ok with pre-existing conditions in 2014.

    I have read how long it takes to possilby get an approval for disability and I don't know what I am going to do in these upcoming months/years until then And if I don't get approved for SSDI...the SSI is only $698 a month which is really not that much to live on as our state doesn't have a supplement to that as others do.

    I'm just praying every day or else I will sink into a deep depression...

    I will do some praying on your behalf as well....Thanks for sharing your honest thoughts where as you said...we can be positive in other areas...but it helps to write out our biggest fears sometimes and know that others can empathize...

    Sending out hugs tonight (( ))

     
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    Old 07-29-2012, 09:09 PM   #9
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    Re: Post ACDF anger/frustration - normal?

    Have you heard about the PICIP?? I have it, and it's been a godsend. To qualify you have to be uninsured for 6mos, have a pre exsisting condition, and have been denied insurance. I'm over 50 (barely) i pay $240 a month. I don't know where I'd be if I didn't have this. Google it. Depending on which state your in either it's run by your state, or the federal government. I'm going to be able to have Neck surgery that I desperately need!! I have a surgical consult in about two weeks. I get terrified every time I hear the politicians say Obamacare. I'm so afraid that if they appeal Obamacare, that I'll lose my insurance. Good luck to you, and (((hugs)))

     
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    Old 07-29-2012, 10:13 PM   #10
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    Re: Post ACDF anger/frustration - normal?

    Oh CuteDog, I just want to give you the biggest hug right now - I wish there were something I could do to help you!!!! I'm not overly religious, but I've started a prayer list, and I'm adding you to it, along with a specific hope that your disability is approved quickly. I know the $698 is ridiculously minimal, but it's $698 that wasn't available to you previously, and I'm sure it will feel like a huge windfall the first month or so!

    Nittany - I am so glad you'll be able to have the neck surgery you need!!!
    PICIP isn't an option for me right now - thankfully I still have insurance - my employer has been amazing, they cover their share of insurance premiums for 24mo once I go on to LTD, so I'm covered thru 5/2014, as long as I can continue to make my share of premiums, which are comparatively minimal (but still a HUGE expense). My biggest fear right now is the Lumbar surgery - I want to have it done in January because that is when my future MIL can come back to help take care of me post surgery, but that means my deductible/out of pocket costs start over again, and the hospital will require me to pay my full out of pocket, which is $7500... um... when I do the math, my LTD payments come to just over $13,000/yr BEFORE I pay for my health insurance, rent, car payment, etc etc etc lol not sure where they think I'm going to come up with $7500, but they reserve the right to refuse surgery if I'm unable to pay, and they refuse to accept a letter of protection from my atty (the HOAs liability insurer has already admitted liability in my case, so we know that this will be covered, but nothing will be paid out until I reach max med improvement, which won't be until after I've had several more surgeries!!!).

    I wonder if we all came together and compiled our stories if we would be able to make any inroads, change any minds, help sway people to see that we aren't looking for handouts, we aren't trying to use/abuse the system, we're just people who had our lives forever changed medically and now need help - the $698 SSDI payment (that I've yet to be approved for), wouldn't even cover my rent, not to mention groceries, medical bills, costs of prescription medications, internet, phone (both necessary to remain connected with the outside world since it isn't like we can really get out - if we could, I think most of us would be back to work!), etc etc etc...

    I don't know - sharing our stories makes me feel less alone, which is a huge help (thank you!!), and also inspires me to want to do SOMETHING to get our stories out there, and try to make lawmakers and the general population understand that we aren't trying to abuse the system, just trying to keep our heads and hearts above water...

    Hope that makes sense, I've already taken my bedtime pills

    Hugs & emotional strength to all of you
    xox

     
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    Old 08-14-2012, 06:31 PM   #11
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    Re: Post ACDF anger/frustration - normal?

    Thank you for putting into words everything I have been feeling for the past 5 years. Thank you so much.

     
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