Since this is a safe place to share with people who have felt my pain. I am in a place where I don’t know how to take care of my self financially. I don’t have unemployment ( not elligible in my state). I can’t get Medicaid in my state till January 1st because my state won’t help anyone who doesn’t have offspring until Obama care sets in and strong arms my state to help the poor and needy. My fiancée is struggling to pay for everything and it is all out of pocket. I am in pain everyday and experience so many weird symptoms that I fear my family is wondering if I cry wolf. Every weekend since Labor Day I have woken up to major migraines, ( not to be confused with the functional migraines) throwing up, nausea, dizziness, ringing in my ears, floating lights in my vision and back spasms that steal my breath away.
Two weeks ago, the heels of my feet started falling asleep without any apparent provocation. Every time the pins. Me needles have hit, I have been doing different things like standing, sitting, laying down and even walking. Then Friday, my right arm started falling asleep (shoulder to fingers). Both of my arms have done this when I was asleep for years. But this is the first time I have experienced it during the day.
Speaking of pins and needles feeling, I also expireance this sensation in my lips seemly for no reason.
So here I am, unemployed, in pain, no idea what I can do during the day that would employ me when I need to be high on something merely just to function. I don’t trust my self to drive because of how often I get dizzy and see swimming lights.
I’m just a husk of the highly independent woman that I used to be. I even attempted to sell my crafts ( quilting, princess aprons, super hero outfits for boys, jewelry, ect) but No dice! I feel like I’ve done everything I can to get ahead (including selling valuables) and I’m just drowning. I’ve lost all of the “friends” I had before the label CM was slapped on me. My family doesn’t understand, they think the “quack doctor” diagnosed me wrong like they have for 15 years ( even though I have medical background and saw the MRI my self). I feel utterly alone save for my amazingly supportive fiancée. I know things will get better. But right now I am having a hard time seeing how I can be a normal human again.
Hi Lindsay,
I am glad you find this a safe place to vent. We are all going through so much but as human beings we can only handle so much. I have found that concentrating on what we can do and not so much what we can't do helps a little bit. I also consider myself quite independent. I once saw a quote somewhere that being independent sometimes means asking for help. I am so glad you have a fiancée that is supportive. You may have some problem with your spine. Try soaking your feet and even hands in Epsom salt. It has Magnesium that soaks through your skin and may help . I hope you get insurance so you can get some medical help. Take care of yourself and don't forget to breath :) .
I'm sorry you are feeling so down. It's hard to get people to understand when you have an "invisible" condition. I hope when January comes you are able to get the medical help you need. In the meantime don't feel bad asking for help! No one can carry it all alone!
I can feel you on this I worked threw all the pain and almost lost my job in the process. I would apply for disability then you will get some income coming in and then you will get some health care also. First step is to apply then you will get denied by disability after that get an attorney they don't cost you anything out of pocket. Did your Chiari get triggered by an accident.
This is my first time responding to anyone here. This hits home. I have to start by comparing health issues. I do not have chiari. I have had a two serious neck injuries which led to surgeries which led to constant headaches/pain which led to severe depression.... so much so that I wanted to end my life. No job, no pain relief, husband that was tired of hearing me complain.... I could not see my life ever being normal. Well ..... we adopted our fourth son. (husband thought that was the cureall). Sons bio mom did drugs/alcohol and this baby had so many health issues. Not going to go into his diagnosis (way too many) but at age seven diagnosed with Chiari I ... that's why I read and read and read. I am on the outside of this terrible disease and have found so much incompetence within the medical field. You, Lyndsay are a lot stronger than many people. Do those words make you feel better??? ..... of course not. But I have some advice that I hope helps. First ..... get a social security lawyer!!!!!! You do not pay anything to the attorney unless he/she is successful at getting you disability social security ... any money owed the attorney will come from the settlement. Second ..... Botox injections from your neurologists may be extremely helpful. After 5 years of continuous headaches.... it worked for me. ( remember I do not have chiari but I have fusions, pieces of hip bones put in my neck .. oh I have no left clavicle so my left arm hangs and causes stress to my neck non stop).... remember most pain killers make depression worse. But the number one thing for you to do is stay connected to people. Chat here ..... people do listen!!!! I wanted to end my life. Not going to lie about that .... but I connected with a total stranger who cared about me ...... I hope you know ...... I care!!!!!! You will get better......
Thank you all for your support! It does help a lot to know that there are others that empathize with the issues I'm facing at the moment. Just for a quick clarification, I do not desire in any manner to hurt my self or to end my own life. I was there at one point when I was 21 but not now. Also, I have no idea if I have had CM since I was a child or if it flared up from one of the many head traumas I have endured in my life. But now that I look back at it, I remember splitting migraines when I was 12 every time we went to visit my grandparents who lived at a lower elevation. Advil wouldn't even help. But I have also been thrown from horses more times than I can count, I have been in 2 car accidents (both resulting in head trauma), and when I was 18, I went to Slide Rock in Sedona Arizona and slipped on 3 separate falls landing on the same spot, right over my occipitale. Because of these falls I started having black out sessions and splitting migraines that no medication would help. All my life I have been with out insurance (with the exception of a 14 month period).
Thank you Liz for the Epsom salts idea. I will get some tonight.
Thank you darci, anglyn, abby, Whipvine, Darci and Emmiline for your kind words. I really just need people who understand, and I feel like the salmon swimming up stream, but the rest of the world is going the other way. I have a support group to go to on Thursday that happens to be at the very hospital I spent over 5 years working at, the hospital I quit because my boss was bullying me about health issues. My stress levels are through the roof but I know there is a silver lining to every cloud and mine is about to shine through.
Thanks again!
Lindsay,
I am sorry you are feeling so alone. Chiari is something most people that has CM never fully understands it so complex and affects not only our brains drastically but every part of our bodies & lives. I was trying to explain to a very compassionate friend last night my journey with Chiari and they couldn't fathom that anyone would have to deal with so much without an end in sight. Most people think you get sick and doctors & various treatments make you better or your illness is terminal. Chiari is unlike any chronic illness I have ever known anyone with or researched. I know illness is subjective but at times I want to tell people that are complaining about their routine or even mainstream illnesses or even understood Rare Disorders they have no idea how lucky they are.
I am so glad you have a loving, supportive fiance. That is very important. I too have lost friends and extended family over the years. Not that I don't care about them. They just can't understand. They don't question my illness or symptoms. Seeing us in agony daily mentally and physically is very hard on them. Not that I am making excuses. This may sound horrible and I am sure I will get a lot of Members telling me how negative I am but I am not .......just totally honest. Living with my CM is like living with 6 terminal illnesses at once only you don't have an expiration date. I am a very positive person or I wouldn't have made it this far. The only thing I can do is hold onto hope. Hope medications and treatments will get to where they can honestly help & doctors really get to where they understand CM and all it's issues, pre & post op. Will it happen in my lifetime......I honestly hope so.
Can you be normal again.....Not your old normal. You have to figure out what your normal is now and mourn your old self and embrace your new self. If you don't you will be tormented. It kills me I can't do the things I used to do but I have to remind myself to let that go or it eats me up inside.I still feel joy and happiness and love and many normal things and make the best of what is not good. Some days are better than others. I do though have incredible friends and my Chiari family I have met through this Forum. I would not trade one of them for the world. When no one else understands I know all I have to do is pick up the phone or post on here and if nothing else I am heard and understood and so are you. You are not alone and never will be. The Members on this Forum are Angels.....sometimes grumpy, scared Angels but Angels none the less.
Tracy Z.
Hi sweetheart. We all feel your pain, some are worse and some of us are just in the beginning stages, like me, my first year with Chiari and having to deal with my job, my everyday life and a new marriage. I thank God every day for my husband the angel he sent me. Chiari can be very disabilitating, but we each have to try and encourage one another, do as much research as we can and find remedies that are going to help you with your pain. Personally they put me on all kinds of meds and all they did was hurt me more. I ended up with advil which has been my only safe remedy and I sometimes rotate it with Tylenol. This is what my neurosurgeon suggested and it seems to be helping for now. Be very careful with some medicines, botox etc because a lot of them are for nerve damage related. Chiari is not always nerve related it is is my understanding. This condition is brought about bc of pressure, lack of CSF fluid etc. which causes the numbness, headaches, etc. There is something called Vestiubular Manipulation for vertigo and dizziness you may want to look into it. I had an occupational therapist do this with me and it truly took my vertigo away. Your fiancé seems to be your greatest support and I’m not sure if you go to church but having people pray with you and comfort you will give you a lot of strength. I know for me it has been my strength and my reason for staying positive every single day. Everyone here has given you some very good advice especially legal and insurance advice. Continue to see what your options are and which doctors will work with you and the ones you feel comfortable with. Please do not hesitate to email me and call me.
Stay strong, God has a great purpose with you. There are always others worse than us. I just lost a gf suddenly to cancer at 41. She left a husband and two lil girls. Chiari can be a battle but we will win the war! Finding a good dr is very important. After one year I finally found a great neurosurgeon that said “no you’re not crazy” and he’s been absolutely wonderful with me.
God bless you!
Lyndsay,
Although I myself do not have CM, your situation is very similar to my fiance Tim’s. He was misdiagnosed for most if his life. He was unable to drive, work, do a lot of his other hobbies and chores. His neck aches, headaches and dizziness were only part of the pain because his self worth was diminishing. We struggled financially and emotionally through his diagnosis, surgery and recovery. It also made us closer and I’m sure your fiance feels the same as I did; wanting to help and be as supportive as possible. If the shoe were on the other foot I know Tim would do the same for me.
You mentioned your family hasn’t accepted the diagnosis. Would it be helpful to have them go to a dr. Visit with you or encourage them to research CM or even invite them to this site? I know for Tim having people think he was “crazy” was so frustrating and when he finally had evidence of his condition he was (still is) telling everyone he can about CM. I hope this helps in some way know you are not alone. Anytime you need to talk we are here : )
Take care,
Alisha
Alisha is right. Good advise. I just have to be cautious at my job and who i share my condition with, but im definitely educating a lot of my family & friends. In fact I just found out one of my distant cousins also has chiari at 5mm as i do. Boy was she helpful and it was great knowing i wasnt alone.
Big hugs.
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!
I have CM and I’m 24. I can totally relate to you. I’m also very depressed and feel hopeless. It seems like I have tried everything and nothing helps. I can’t work either. I am on disability. You should really try to get on it. You let them know everything. How it is dibilitating and affects everything in your life. I didn’t know I was eligible for it until my dad told me about it. I didn’t file until two or three years after my surgery. They count me disabled from the date of my
surgery. I am live on my own and disability is not much but anything will help. I really hope everything works out.
I really wish I could just hug you. I know that doesn't even begin to help but I am aware of the power the inter workings of my own mine have and the damage we can do to ourselves. I want my old life back. I have been a strong independent woman who grew up on the streets without a family put myself through college twice raised two children with disabilities and held my head high. I beat every odd that was laid in front of me including cancer three times and an abusive husband. Then Chiari Malformation entered my life and I feel like I have loss every ounce of control I had. I have bouts of anger dismay bitterness self pity and just pure sadness. I keep telling myself I am a survivor look at what Ive done but it doesn't seem to overcome Chiari. I pray you find peace and if I could take your stress and pain for a day I would honestly. Because I know one day of my old self would be the biggest gift I could receive :) If you ever just want to talk please message me and we can scream or cry together!
Nicole
I am so sorry to hear of your pain. I also went through the "loosing friends & people thinking I was crazy" stage. People can be cruel when they do not understand exactly whats going on. I am surprised the hospital did not refer you to a Free Care section. I work for the hospital and we have services that help people with major issues like Chiari. you should call your local hospital and ask to speak with a Case Manager. Explain your problem and see what they can do to help you. I feel your pain and hopefully you will get help soon
I feel you! The only things that keeps me from being depressed or anxious are my hobbies and creative projects. It really helps to have activities that can take your mind off of chronic pain and suffering.
My family has ostracized me because they think I'm "lazy", though it's no big loss, really - I don't have a relationship with my father, and my mother's side of the family is mostly composed of criminals and middle school dropouts who see a woman with a college degree and the self-made career (that I used to have) and assume that I'm putting on airs. They've always been quick to find reasons to try to shame me and put me down since I was a child, and I can do without their negative influence.
I lost touch with most of my friends because I don't go out anymore. I was getting pretty tired of the bar scene prior to my diagnosis, and most of the people I know are still partying well into their 30s. That's fun occasionally, but not every single weekend! I don't even date anymore because I'm usually tired or in pain, and I know that having the ability to deal with me is asking a lot of someone new.
I've also applied for Medicaid and I was denied because I don't have children. What do they want us to do? Go out and have a bunch of kids that we can't even afford to raise?! I'm hoping that Obamacare will help me, as well. It's a shame that some politicians will use their power to stop a law (that has already been passed, I might add!) designed to help sick, financially disadvantaged people get medical treatment! Ugh, that's a whole 'nother discussion… :p
I feel so incredibly lost and alone, and I don't know where we go from here. :/
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.
If this means anything to you beautiful single girls & you handsome guys, I am 44 years old diagnosed with Chiari this year and met my husband one year ago right after my accident and going through all these multiple symptoms and ailments following my accident. Few months later I was diagnosed with Chiari. I don’t want you girls to lose hope or your dreams. I never expected as a single mom of three to meet such a wonderful loving person especially during the toughest time in my life. I was a healthy, professional and hard-working woman pretty much all my life other than arrhythmias. I worked hard raising my kids alone (theyre all adults now), hoping to have a happy ending after raising my kids and living my dreams. Honestly, Chiari nor anyone nor anything, will keep me from pursuing my dreams. God has blessed me with such a wonderful companion, He proposed after three months and we were married in six months. I am grateful for that. I’m still struggling and learning more about this Chiari. We never know how our stories will end with Chiari. Everyone has a story good and bad. The important thing is that we support one another stay strong and never lose faith. I am very hopeful and I try to live as positive as I can with the people around me that want to be a part of my life. Honestly it is painful but I’ve learned to laugh through it. The other day, this is embarrassing, but I literally had to hop away from the toilet because my legs went numb… my husband came to the rescue. I was cracking up so bad I said this is ridiculous! Anyway God bless you all. Have a wonderful weekend!!! Hugs & kisses!!! I am always available to speak to anyone anytime just email me.
I will say that you need to get a lawyer to help you with your ssd they get paid when you get paid. I would not hold your breath about The Health Care. The better things about the health care bill passed before this Oct. Sorry you feel the way your feeling.
Lindsay I can speak from your fiancé’s point of view. I was there with my husband Dustin. He had been diagnosed with a number of things over his lifetime, and his family is of the mindset that if you aren’t bleeding or vomiting you just aren’t trying hard enough to be better. He was diagnosed a little over five years ago, and his symptoms progressed very quickly- diagnosis was in June, by December he was wheelchair bound and had lost all use of his left side. I was pregnant, and the neurosurgeon was concerned about the loss of control had on his left side, he didn’t want his heart to just stop one day, so we scheduled neurosurgery six weeks after I had our first daughter. We had to apply for his disability twice, the first time we were told we needed to see if the surgery was truly successful first. It wasn’t, eighteen months after his surgery and symptom remission they all began to return, with one or two new symptoms as well. We visited many specialists, and none of them could do anything, so we got a lawyer and applied for social security disability again. The second time we won. It isn’t much, but it does help with the financial strain, and they will back pay to what they determine is the start of your disability. Dustin doesn’t get a lot because he is so young, but it helps fill in the gaps of a few bills when added to my income.
I can tell you that your fiancé may be stretched thin, but he has stayed with you through your problems, through your friends leaving (many of Dustin’s friends stopped seeing him as well, he found new friends online) and through all the family doubts (his family acted for years as though the Chiari really was in his head, and all he had to do was try harder to get better, in fact his father still says that even though he is permanently wheelchair bound and every doctor we have seen offers no solutions other than treating individual symptoms)- he will stay with you because he truly cares for you and that is a rare thing. Disabilities are hard to see someone you love suffering through, and to feel helpless as you can’t do anything at all to relieve the suffering.
You are still a strong independent woman, just in different ways. You are strong because you go through more physically and emotionally in a day than many people do in a year. You are independent because you are still trying, you are still participating to the most of your ability in your life, your care, and your relationship.
Lindsay...gosh...the first thing I would like to say is .. Thank you so much for posting this. I don't know how many times I have felt like this over the years. 15 years misdiagnosed, I lost 'everything'. Employment, friends, family, stopped driving due to vertigo, dizziness/near fainting, eye site changes, pain and numbness in arms and shoulders etc. 3 years after diagnosis, my husband left me for another woman 6 months after my surgery didnt work. I thought FINALLY being diagnosed was a blessing. "Yeah! I'm not crazy!" Right? Well, now, I it has a name but I know no one, not even the docs that know anything about it what so ever. Well, or very little, not enough to give me confidence to let them cut into my brain. (Which they all seem to want to do...even if their specialty is Ms or epilepsy)
I am on ssi and medicaid. So the option to travel as I did with 1st surgery is null and void.
The options just dont seem too great with CM and Syringo. Hard to dream about the future or plan or even want to do something...cuz gosh, is the ability to really do it and keep it up every day even a reality?
I guess, I try to focus on the positives and all those quotes and cliche's ...K.I.S.S. (keep it simple sweetheart) Dont sweat the small stuff. Happiness is a choice...it comes from inside. Dont live in the past, it caused depression. Dont live in the future it causes anxiety. Live in the here and now, in the moment, cuz it is a gift, thats why they call it the present. etc etc etc.
Its hard though when You reach out to grab it...and your shoulder cramps up or your hands are so numb ya can feel if ya touched it or not... lol
Most of the time I want to scream "STOP THE WORLD I WANT TO GET OFF NOW!!"
But you were strong enough to talk about it. I was too scared to be debbie downer. lol
So thanks for helping me feel not so alone. :)