A little about me a fellow chiarian who is over feeling like a truck ran me over while i was asleep!

My name is Varnya the big 30 soon waiting for opp soon too, you no it sucks sometimes waking up feeling worse than when you went too bed, lately this is me, feeling like a truck has ran over my head an squished everything at the back of my brain right where our lovely friend chiari lives…lol is their anyone out their who misses their old lives blink an its in the past chiari chiari chiari is our whole lives now>>> has anyone had the opp an semi gone back to a normal kinda life??? my life has changed dramaticly in the last 8 months gone from working hairdressing driving goin to the gym etc to been stuck at home everday not alowed to drive anymore i shake too much an have tremors lots my life is very quiet now, sometimes it just sucks but still pushing on each day, did you ever think that you would be the one [ the sick person ] who doesn’t work??? ssori im just having a little rant sometimes we need to do this too… thanks for reading

I have gone back to a more normal kind of life. After awhile from recovering from decompression in 2003. It took awhile to get things back to as normal as they could be. I still get headpain and other symptoms. (I was 15) I refused to miss school and fall behind so I fought my way back. I finished HS and went to community college. I worked full time through college and went to school full time. I got my Associates degree in business management. I'm the Asst. Guest Service manager at a hotel now. Its still hard and there are a lot of things I'm not able to do or not allowed to do (rollercoasters...that makes me sad. But I've learned to deal with it.) I get dizzy just from driving too fast over a hill so I can only imagine what being on a roller coaster now would feel like. It does suck some days pushing on. But you have to realize what you're pushing on for. Find something that you want to work for. If you cant go out and work...do something else you love and make that work. Whether it be crafting or computer work or something like that. There are endless possibilities.

Take Care,

Alicia

Hi Varnya,

For me, after the surgery and at least a yr. post op...I started feeling more like my ole self...had improvement in some areas and still struggle with some others..such as walking/balance/gait issues..

To be honest with you , it took time to really see/feel the strides I had made b/c they we subtle.....But improvement did come..in time...some folks have the operation and are back to 'normal' in what seems to be no time...some of us have to wait for the positive results to come and see/feel improvement....

Abby recommended a book that is a great resourse...I also would recommend.."Contents Under Pressure" by Ray D'Alonzo...it is his own struggle with Chiari, getting a diagnosis and surgery..then his struggles after the surgery..as well as the progress he has made..it is a fabulous book.

Take Care and Keep us updated.

Lori

Hi Varyna,

The big 3-0! I will be the big 5-0 this year! You are still a baby. We all at some sense of another, have experienced what you are going thru right now. I used to be a fitness instructor, working full time at a gym, had a family, dogs, driving, shopping, etc. before the chiari took over my life. I never for one second thought about myself being sick and not working. I was always the healthy one and worked hard at keeping it that way:) Now I have had the surgery (3 yrs ago) and my whole life has changed since being diagnosed. I've had four chiari-related surgeries in the past 3 years and can no longer return to my work that I loved so much. My children are adults now and have moved away from home. It's just me and my hubby. I always thought that we would live our golden years traveling and enjoying our lives. I am getting back to a somewhat normal life, but I never know when I might have a bad day. I don't work anymore and don't plan on it, I just recently got approved for disability. My husband and I do have some small trips planned and I am helping my daughter plan her wedding.

I know alot of people talk about feeling worse after surgery or not being able to return to their normal lives. We all go thru that grieving stage when we realize that things will be different for us from now on. I just look at the alternative, I guess. If I had not been diagnosed and treated (whether surgery or medications or alternative treatments)would I be paralyzed? Would I be sicker? Would I even be alive? I also look at the fact that even though Chiari sucks, I have met the best people in the world thru our common disorder. I think I have met the friends that I will always call my "best" friends! Most of them are here right here on this site:)

I'm glad you are here with us and I look forward to getting to know you better. I'm glad that you feel comfortable in sharing your story and feelings with us. That's what most of us are here for! Contact me anytime if you want to talk:)

Love,

Carla