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Feeling unimportant-Lots of tears

Hi everyone. I'm new, but not. I had another screen name and used to post regularly but had to erase it because of a lawsuit that is now completed- finally! My old user name was fancypants.

I was in a car accident going on 9 years ago. I was told I needed a 3 level cervical fusion at C4-5, C5-6, and C6-7 about 5 years ago but with no insurance I've had no way to pay for it. I have cervical instability, DDD, get migraines, osteoarthritis, muscle spasms all over my neck, shoulders and upper back as well as my lower back along with a bunch of other things.. I have mostly absent reflexes in my arms and loss of sensation in my hands and arms. Within the past year, I've also had L5-S1 degenerating which the doctors think is what is causing my problems with my SI joint. I have lost in a matter of months about half the reflexes in my right leg. I have no current MRIs but the damage can be seen via x-ray, even by me and I have no medical training whatsoever. I'm 36 and can barely work anymore.

For years, my mother has fought me constantly about needing surgery, how much pain I am in, etc. I feel like I've lost a good portion of my life to this fight, I have no husband or kids and with each passing day, that hope grows slimmer and slimmer. My doctor has told me I cannot or should not get pregnant right now, which honestly isn't even an option. It's really hard for me.

Well, about 8 months or so, my 72 year old stepfather got into a car accident. He needs surgery which he is getting within the next few months. Not sure what the date is because I was so upset when I found out that he is getting surgery that I've begged for for years now. He has a lot of the same symptoms I do and he finally listens now when I talk about pain as I do when he talks. When I got upset, my mom said, "it's not about you", which is a common line coming from her. I snapped and told her it's never about me. In fact, she told me the other day they tend to blow off what I say because it's me. Nice, huh? Never mind the constant diminishment of my pain. I'm younger and therefore I don't hurt as badly as he does according to her logic.

Well, I have been crying almost non-stop since yesterday afternoon. My mom has told me that it's more important for him to get the surgery because he is older, that marriage and children are overrated while pushing for my sister to get back together with her ex so she an get married and have kids. Meanwhile, I have no friends and no life. I have no help so I have to do everything on my own. I also get fussed at for not having a full-time job. To complicate matters more, my ortho passed away so I have to start the whole process over again.

Now, my mom has been to maybe 5-7 doctors appointments out of about over 350. They've never offered to help even though the price of one of their cars would cover most of my surgical expense. She attends every single one with him. I know he's her husband, but I can't help but feel like my health and future well-being doesn't matter at all. She was completely anti-surgery with me until he got in his accident. Now it's all about me helping him out and as usual, my pain and well-being are on the back burner. I can't get disability because I need an all new ortho work-up and my MRIs are being denied even though I fit the criteria for a successful appeal (currently on insurance for people who can't get insurance because of pre-existing conditions- pcip.gov. I feel like my life and happiness just doesn't matter at all, as long as my stepdad gets his treatment. Which he has, puts mine to shame. Don't misunderstand me, I don't want him to hurt either. I don't want anyone to feel what I do. However, I can't help but feel like I don't matter. None of my family, who have all been in accidents, waited to receive their treatment more than a year or 2. Like I said, it's been almost 9 years of chronic pain during what should be some of the better years of my life.

I am the only patient advocate that I have. And as of right now, I'm upset and envious that his surgery takes top priority while I suffer daily and am constantly asked to help out the family, no matter the cost to me. I probably sound like a brat, I don't mean to, I'm just so tired of fighting and fighting and getting nowhere. The fact that he is getting taken care of so quickly feels like a slap in the face. I can't go anywhere, I can barely do anything anymore and yet it doesn't matter that I have years and years of life left, hypothetically. I'm sure I'm wrong for being upset that he's getting surgery and I get to keep waiting and waiting, suffering through horrible pain- I'm sure a lot can relate to the waiting part. Am I wrong for being hurt and upset, feeling like my life and happiness doesn't matter to them? Am I a terrible person for wanting to be able to get better and being envious that my stepdad gets to have his surgery so quickly while I've been treated like I'm a big baby even though I need the surgery as well? In all honesty, even if he had no insurance, he'd still be taken care of while I have to wait. I am a horrible person, aren't I? I'm still upset and crying. I'm tired of feeling worthless, useless and utterly alone. I've been living off of hope for years, and i was really hoping that I would get my surgery within the year. Now, that seems impossible. I'm at the end of my rope. Most of my family doesn't listen and I've no one to talk to or turn to.

And yes, I've done massage, chiropractic care (he said I need surgery), physical therapy, tons of trigger points and ESIs, steroids and just about every type of treatment one can imagine with little to no relief. I had a discogram, OUCH! feel like my back and hip problems are a direct result of being made to wait so long that it has caused other problems I did not have before. I'm an emotional mess today. It's been bad, but this is kind of tipping it into me feling worse about myself.
Need 3 level ACDF for 5 years now, SI joint problems also problems with L5-S1, not sure if I need surgery for my back. This just started in January 2013. Too much pain and too young! Been in PM for over 8 years with no surgeries yet.


  • dilaurodilauro ConnecticutPosts: 9,877
    If I remember correctly, you are Nancy? Excuse me if I am wrong, I try to remember names.
    Reading your thread, it almost seems as though not much has changed. You are in pain, suffering daily, those around you dont seem to put a lot of effort into helping you. Now, the surgery for your stepfather... That I am sure has pushed you close to the age. At 72, to me, surgery for the spine is not critical, but for a younger person who has a long life ahead, I would think surgery is more important.

    Sorry for you recent troubles, as you know, we know your condition, etc and only wish there was something we could do to make you a bit more comfortable and smile a bit.
    Ron DiLauro Spine-Health System Administrator
    I am not a medical professional. I comment on personal experiences
    You can email me at: rdilauro@veritashealth.com
  • fancypants723ffancypants723 Posts: 3
    edited 05/16/2013 - 4:42 AM
    That's it Ron, I'm Nancy. Glad you remembered. :)

    No, not much has changed apparently aside from developing new problems. Thank you for responding. I'm so tired of the fight. And I know they'll expect me to take charge of the office while he's out and I can no longer do that. I've pushed myself to constantly work, but I can't do it anymore. My SI joint is always inflamed, can't sit, stand or drive for long without a bunch of pain (it's my right hip.). The more things change, the more they stay the same. Some days I wonder if anything will ever be good again. I wanted to go back to school but my SI joint flared back in January, has been non-stop since then. Insurance company has denied my MRIs every time, my doctor is trying to appeal again even though I already meet the criteria for a successful appeal. I wonder if I will ever have a life. I fight so hard and get nowhere, obviously.
    Need 3 level ACDF for 5 years now, SI joint problems also problems with L5-S1, not sure if I need surgery for my back. This just started in January 2013. Too much pain and too young! Been in PM for over 8 years with no surgeries yet.
  • Hi Nancy, I feel really bad for your situation. May I offer a few suggestions? If you go to a hospital that has MRI capabilities, you can ask for an application for financial assistance. Depending on your income level, you may just qualify for free care. There are many programs that you should check out, you never know, you may find something that may help, also contact your local disabilities office and they can point you in some directions as well. Let us know how things go for you. Good luck!
  • Hi Nancy you sound like you could do with a good friend and some family surport, I am sorry you are not getting that as for the medical care I am from England and we have NHS here so I dont understand about haveing to pay for medical care. I really hope things change for you in the future and your story really touched me. Takecare and goodluck
  • Thank you for your responses. And thank you for making me feel a bit better.

    Secondtime- my last PM doctor was a complete nightmare. I use my GP, he's been the best at trying to manage my pain thus far. The others have been injection factories. The injections don't work. In fact, my GP was very angry at my PM doctor when I saw him. I'd never seen him mad before but he was ticked off. Until I find a good one based off of a good recommendation from someone, I'm not going back into PM. Thank you for the thoughts and prayers, they are much appreciated!

    Paininohio- I tried to go through the university medical system, which offers indigent care, but they said I was too young and to keep with the conservative measures that were not working. They would not help me to get surgery, flat out denied me. Louisiana's governor really, really sucks. They are refusing the extra $$ from Obamacare, so my state is not much help at all. Insofar as disability, they've already denied me and I doubt they'll do much for me. I should be on disability but have to get re-evaluated by an ortho again. I'm just plain stuck.

    Tina- I wish to God we had a better system than the current medical one, it's a ridiculous mess! And you're right, no friends or familial support. I feel like no one cares about me at all.

    I don't know what if anything will ever be figured out. My mom talks about my stepdad falling, sheesh, I fall all the time! I trip over things, clumsy as heck because of all these problems in my neck and now my back and hip. I can't help but feel if I had gotten the medical help I needed in a timely manner, that I may not have all the problems in my back and hip. I may be wrong, but that's my opinion. These problems weren't there a year ago. I feel like I'm going to wind up paralyzed before I actually get any help I need. Even my current ortho said just from looking at my x-rays that I need surgery. But of course, I need MRIs to actually get that ball rolling. I actually have had people say to me, it could be worse or at least you don't have cancer. I told them that at least if I did have cancer, there would be a plan, resources available and people would care. Everyone has fundraisers for people with cancer down here constantly. I always see fliers for meals, etc. to raise $$for someone with cancer. But spinal patients, especially the single ones, no one cares. I'm not trying to minimize problems for people with cancer and I am grateful I don't have it, but if one more person tells me that I may just hit them! Short fuse these days. My family expects me to help them out constantly. Especially now that my stepdad needs surgery. That just makes me more angry and sad. I've had my mom tell me to go do the heavy lifting and have wound up having to go home because they had me moving heavy file boxes or cases of water! I'm not supposed to lift over 10 pounds. And they wonder why I'm upset! Not sure how much more I can take.
    Need 3 level ACDF for 5 years now, SI joint problems also problems with L5-S1, not sure if I need surgery for my back. This just started in January 2013. Too much pain and too young! Been in PM for over 8 years with no surgeries yet.
  • paininohioppaininohio Posts: 240
    edited 05/16/2013 - 7:55 AM
    Nancy, I wish there was more I could do for you, I really do feel bad.But I am here if you want to talk, yell, vent anything at all. I'm lucky that I do have my husband, but I have actually cut off all contact with my mother (my father passed), its a long story, but I can tell you one thing, I am so glad I cut that tie off, I've been much more emotionally stable. I'm not suggesting that you do this, but maybe cut off the helping hand and see how they react? Maybe without YOUR help, maybe they might realize the jerks that they've been? Feel free to PM me at anytime. Good luck!
  • Nancy I found out who my true friends and family memebers were became when I became ill, I was only 32 I had to give up work and when i could no longer support others or help them out because I only had time for me my son and my illness, I lost a lot of friends and one sister because I could no longer babysit her kids. So paininohio is right if you pull back with them abit they might realize how much thay do care. Look after yourself takecare
  • charlie6017charlie6017 Posts: 412
    edited 05/16/2013 - 10:58 AM
    Nancy.........I am truly sorry for the way you have been treated. Makes me very sad that someone would treat their child this terribly. Unfortunately, unlike friends--we cannot pick our parents. I wish I could do something, anything to help make your life better. I will definitely pray for you........glad you're here.

  • jlrfryejjlrfrye ohioPosts: 1,110
    I know first hand how tough it can be being single and not having a support system. Thank god my family finally woke up one day and decided " yeah there really is a problem". Have you tried to appeal the decison on your MRI yourself.? Sometimes it takes both the Dr and the patient appeals to get a favorable answer. Insurance claims for medical is what I do for a living so If I can help you in anyway with your appeal please ask, Ill be more then happy to help you. All I need to know is which insurance company is doing the denial then I can walk you thru the best process to win a approval. Maybe your parents are not handling this the correct way but perhaps could it be because they realize the insurance situation and feel helpless? Hang in there and dont give up the fight.
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