Hi Lindsay, This really hit home hard. I havnt been here for a while. Ever since my diagnosis, I feel robbed of my life. It was a simple life, but I was happy with it. A fast chain of events happened. First, my husband left me. I know it had a lot to do with him not believing that there was really something physically wrong with me. Then the pain started, & 10 years or so after every test possible, this time the diagnosos came. I'm ashamed to admit, I spent some time feeling sorry for myself, not to mention, the fear. Fear of the surgery, Fear of not being able to take care of myself alone, both financially & otherwise. Then the last & worst blow came....Its an odd story how, but the surgeon I finally found to do the surgery stumbled upon unrelated tumors in my bones, which have NO symptoms. I AM in severe pain with the chiari & syrinx, but not the tumors. I just had the spinal biopsy, & am now in the waiting for the news faze. Maybe I took the long way, but I am trying to point out 1 positive thing in this nightmare, & despite the financial hardship, pain, fear & alienation, THERE IS HELP OUT THERE for this, & with the help from the wonderful people here, you will get there. I'm not saying it's going to be easy, but you will! Oddly, I used to remind myself up till about a month ago, that it could always be worse, & that other people wind up with terrible things that there is no real treatment for, or that takes lives. Now I sit here, fighting off panic attacks, waiting to see if I am one of those people. I am NOT at all trying to say I dont feel for what you are going through, quite the opposite, I truly understand & know exactly how much pain & suffering you are dealing with. I am hoping to help you emotionally, because that is so much of this condition. I strongly recommend you write every elected official in your state!....they HAVE to respond!!! DEMAND EVERY # & website to EVERY resource that exists!!!! & the other advice about the lawyers is good also. Hang in there. Hope you get relief!
Oh boy...I know exactly where you are coming from! I've been misdiagnosed and told by many it was all in my head as well...then the depression sets in...and that's when bad went to worse. Now..everything is because I'm depressed! I have the raging headaches and tingling and pins and needles sensations in my four limbs. My scalp hurts so bad sometimes I won't brush my hair. My face goes numb...I get vertigo and motion sickness a lot...learned the hard way to never watch a 3D movie...and for a long time I seriously thought that I was losing my sight because of the floaters. I'm not sure if anyone ever understands what hell we go through...if you have someone who is helping you through this..that is wonderful...just know that I understand your frustration and desperation..because I feel it to. We all have...justbe kind to yourself and listen to your body. Take care...Beth
I will be so embarrassed if this is a duplicate message- my laptop is acting up! :) I KNEW you lived in AZ when I saw the Jan 1st date! UGH! I am also awaiting the new year so I can get medical care and in Phx area. I would love to meet up for a Starbucks and maybe we can put our 2 "dizzy" heads together and come up with a way to help each other through this. Your post was like reading my own story- I know exactly how it feels to feel like a 1/8th of who you used to be, struggling for a doctor to hear you, not able to work, and the worst of all- NO medical care. :(
I sent a private message with my cell and email, I hope we can meet up and we can kick this Chiari together. :)
Lindsay, I believe I met you at the support group meeting a few weeks ago in AZ. I was thinking about you last week and was wondering how you were doing. I enjoyed the support group meeting but would like get together more often with other Chiarians. My son Steven who is 18 just had surgery in September at Barrows and is doing great. Chiarionelove - would like to get you and Lindsay and anyone else in the Phoenix area together for coffee or something.
I would like to assure you you are far from alone in how you feel and being isolated by friends and family, Hell, my husband even left me after racking up all our cards partying while I suffer. You are blessed to have such a great fiance and your family here. The more depressed I get, the more I come here and my chiari friends race to my side and we will be here for you and help you through also. I do understand the kick to the pride when you are used to supporting yourself, and understand the extra torture the system rewards you with for being that hard working person. I am fairly sure most of us do. wish I could reach out and give you a hug, It is a long unfair road that none of us deserve, but it is the cards we are dealt and we need to help each other through to the other end where we come out stronger, Sending all my love
Thank you Abby. You are teaching me to be productive when I have a good day...or even partial day, and what better way to be productive than to share experience and knowledge....or just assure a fellow chiarian that we are all here for each other. Lord knows I will need some help again!
Hey, Lyndsay. What's your kik? I'd love to have someone to talk to, as well.
Lyndsay said:
Bluecore, you nailed it hon! That's exactly how I feel. I don't know if there is a way to personally message people on this site, but if any of you need to talk, I have kik messenger for a smart phone and I'd love to have a buddy/buddies to talk with about this "invisible" issue we all suffer from.
Hugs! I am in agreement with trying to apply for Social Security Disability. At least with that you’ll have something to go toward the basics of life. Look into your public assistance programs. If you are x amount under poverty level you may qualify for some help. But your going to have to weigh the qualifiers. If you are living w/someone else thier income maybe taken into account or you guys might be better off if you get married sooner and he claims you as a dependant. Social Security isn’t easy but they will give you someone to help you through the application process if you ask and although Medicare doesn’t cover everything it at least covers a good bit and If your income and resources are low enough you may qualify for supplimental social security income which is an emergency benefit and that sometimes opens you up for medicade. Just make sure you disclose all your income and resources because otherwise it will be an overpayment and they will come after you or your family to get thier money back. But file now because you will get back paid till now even if you are denied and go through the appeal process and get approved later. Plus they can give you retroactive pay for up to a year if it is determined that you became disabled before now. I can relate to your struggle because I went from having a full time career that I had no plans on leaving into homelessness before my situation got sorted out. Call the department of social services and get assigned a councilor and see what options you have available to you to get you past this hump until it all gets sorted out. Hang in there girl!!! Hugs and Prayers! Kris
I understand my family is the same way. Think God I have a great husband he really helps me threw the days of the ruff pain. But I can remember telling my dad I was trying to go to another doctor he told me “you know you aren’t going to get anymore on your check” .I was so upset I just wanted him to understand how much pain I was in and how I just wanted him to listen to me. Now I am getting ready to have another surgery and I still don’t have the support from my family either. I think because they can’t see this problem it’s not there. Good luck I understand what you are going threw.