I am new to this but not new to medical issues and have a pretty significant background with medical problems but this feels like a whole new world. Some days are good some are bad, when I call the Dr they act like I am bugging them and I am sitting at work crying because I am in pain all day. But I have to work. And I have probably the worst job ever for someone with a chari I sit and look at a computer all day at a desk. But today has been especially bad my head hurts my eyes hurt I have been struggling for words things are blurry. Its just hard today..
Hi Lindsay, it’s Kelly again! I’m so sorry you’re having such a bad day. I held onto my job as long as I possibly could and it was very hard. I finally had to give it up. It wasn’t easy as my husband and I lived off what we made. It cut our income in half. I sold my car, I sold my bedroom set and we spent all of our savings. Nowadays we live paycheck to paycheck. We found out in the process that things can get worse, our daughter was losing her hearing in her right ear. She ended up having two surgeries and has to have a third one. She is now deaf in that ear. I have been trying for more than four years to get disability, but with no luck. I find myself getting very angry about the whole disability thing. I did not do this to myself, I paid into the system for more than 20 years and I can’t get it. I know people who caused their own problems , by doing things they shouldn’t have and also never worked and for some reason they can get it. Sorry for complaining, it just infuriates me. I’m thankful that I have a husband who works very hard to support our family. I worry about him and his health all the time. He has a very high stress job that pays a lot less than it should. I hope you have someone you can rely on like I do. It wasn’t easy for my family to deal with at first and they still make comments that make me mad. It has taken sometime but they are more understanding. I learned from this support group that a doctor works for you, not the other way around, so if they make you feel like you are a bother you may need to change doctors. I’m not sure if this helps or not, but one thing I’ve learned is things can always be worse. I pray your symptoms improve so things will go better at your job.
Kelly 
I am so sorry about your daughter. I am so very very lucky that my daughter is healthy. But we are on our own. We live with my mom and Dad and they help where they can, which I am for ever grateful for. And my dad has a CM as well which is why it surprised me it took so long for them to find mine. But my ex-husband is no help he is more of a hindrance than a help he does nothing for his child and just quite his job so he would not have to help take care of her. So the burden of everything financially falls on me. I have to go to work every day most days I work over time because we need the money. I just need more hours in the day and less pain.
Kelly said:
Hi Lindsay, it's Kelly again! I'm so sorry you're having such a bad day. I held onto my job as long as I possibly could and it was very hard. I finally had to give it up. It wasn't easy as my husband and I lived off what we made. It cut our income in half. I sold my car, I sold my bedroom set and we spent all of our savings. Nowadays we live paycheck to paycheck. We found out in the process that things can get worse, our daughter was losing her hearing in her right ear. She ended up having two surgeries and has to have a third one. She is now deaf in that ear. I have been trying for more than four years to get disability, but with no luck. I find myself getting very angry about the whole disability thing. I did not do this to myself, I paid into the system for more than 20 years and I can't get it. I know people who caused their own problems , by doing things they shouldn't have and also never worked and for some reason they can get it. Sorry for complaining, it just infuriates me. I'm thankful that I have a husband who works very hard to support our family. I worry about him and his health all the time. He has a very high stress job that pays a lot less than it should. I hope you have someone you can rely on like I do. It wasn't easy for my family to deal with at first and they still make comments that make me mad. It has taken sometime but they are more understanding. I learned from this support group that a doctor works for you, not the other way around, so if they make you feel like you are a bother you may need to change doctors. I'm not sure if this helps or not, but one thing I've learned is things can always be worse. I pray your symptoms improve so things will go better at your job.
Kelly :)
It’s awful that when you end up getting diagnosed with something that can be so debilitating as chiari , that there seems to be almost nowhere to turn for financial help. That’s why I say I’m so lucky to have my husband. I would be in a homeless shelter or something, I don’t know. Has your dad had decompression surgery for his chiari ?Does he have a lot of symptoms too? Did your mom and dad think that you might have chiari before you were diagnosed?
Kelly
No my dad hasnt he was told that there was no surgical option so he manages his with medication. ( and is doing very well after years of struggling to find the right balance of medications for him ) He has migraines and has been having issues swallowing as of late so I am going to get him to go back to his neuro. My dad told me to have them look for it because he has it and for the most part I take after him but they never found it but I feel like that may be because I cant have an MRI due to my pacemaker.
I’m so sorry for what you are going through. Have a pacemaker seems to really be complicating this for you. There is a chiari doctor on this support group that you might be able to ask advice from. I think the doctors name is Dr. Trumble, but I will check to be sure. You will need to go to the members page there is a look up bar put the name in there and post your question on the doctors page. I think it’s worth a shot. I will look it up and make sure I have the name right.
Kelly
Okay, it is Dr. Trumble from Florida. You may have to send a friend request. I have seen the doctor on here several times since I joined a few months ago. I hope you can get some answers, so you can get some relief and keep working.
Kelly