Avatar universal

Finding your inner strength

Just wanted to take some time to say a few things I’ve learned through my journey with chiari.

It’s been a bumpy and trying road filled first with confusion, fear, and sadness but eventually leading to hope, encouragement and acceptance

I’ve learned to be strong, I’ve learned patience, and I’ve learned to accept that this was the life I was given and to make the best of it

I’ve learned that pain can’t take everything from me. I’ve learned ways to cope and how to dig deep inside to find my inner strength when my body is weak.

I’ve learned my limits and when to depend on others for things I can’t do for myself. I’ve learned how to not feel guilty for not being the same person I used to be and accepting the person I am now.

I’ve learned humility and also pride in my ability to look past things that used to bother me. I’ve learned to appreciate the things I’m still able to do instead of crying about that things I no longer can’t.

I used to cry and wonder why me, what have I done to deserve this but I’ve learned that it’s because I’m strong enough to handle it, even though sometimes I feel like breaking

And I’ve learned that I’m not alone in this. That I have a chiari family here which I am grateful for.

No matter what my chiari future holds, I hold on to hope and faith that one day we will all be pain free and made a better person for enduring it

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620923 tn?1452915648
lasel22- I hope you visit with Dr H went well....do keep us posted and I understand why you do not come here that often, we do need a break from it , but unfortunately even if we do not visit this site, we still have to deal with the results of the condition....reading how others are finding ways to cope may help you put things into perspective so you can get rid of the anger that will keep you from finding/seeing your new path.
Hope to hear from you again soon.
Helpful - 0
Avatar universal
Thank you Kerri and Selma for your encouraging words. I’ve been dealing with chiari/EDS/instability since 2014 and as you know it can be difficult not only on ourselves but our family. The funny thing is I don’t check this site much now because sometimes you just need to get away from it (Selma thank you for being there for everyone who comes here and asks questions, you are so helpful) but I did check it today as I just arrived in a hotel in Maryland near Dr. Henderson’s office as I have a follow up appointment tomorrow.  I’m not in the best of moods having to deal with this and reading your post has helped me. Thank you. I’m definitely not at the point you two are with accepting my situation, I tend to be in denial a lot, but I do try to make the best of it. I’m still angry though. I can’t seem to let go of the anger when I think about wanting my old life back. I know I need to. Anyway, thank you for reminding me I’m not alone in this and others are dealing with the same thing and I always try to remember it could be worse.

Also, Kerri, I hope your recovery is going well and you are seeing more improvements and getting stronger every day.
Helpful - 0
Hi lasel! First, I hope your appt goes well. Is this for the instability? I sure hope that you’ll be able to get the surgery. Not that anyone wants to go through it, but when it’s needed it’s needed.

I was diagnosed with chiari and EDS 6 years ago. Was told I needed surgery and I chickened out so I waited 2 years. Then had the first surgery and set myself up for a lot of false hope. I spent the better part of 2 years after that in pain and crying. Don’t get me wrong, I still break down but just not as often.  And I do still get angry. It seems like something struck a chord with me that I can’t change anything and so maybe I just need to make the best of what I’ve been dealt

I’m actually gonna register for the chiari walk this September. I’m not sure how much I’ll be able to walk but I’m sure gonna try!

I will say recovery this time is much tougher. But it’s only been 6 weeks so it’s still early. Thank you for asking. And I hope and pray you get answers and can move forward with whatever needs to be done to help you feel better. I’m always here if you ever need to talk. Good luck with your appt!
Avatar universal
Well said I truly wish i could be strong. My symtoms are so bad I feel lightheaded all the time now along with the head pressire it sucks so bad... On top of that the short of breath feeling i have has gotten worse too..  
Helpful - 0
Strength will come in time. You eventually learn how to cope with the array of symptoms and just listen to your body to know the red flags.

Don’t sell yourself short tho, you’re stronger than you think. You’re reaching out for help and advise. I truly believe you need a specialist to help you if you’re able to travel
Avatar universal
Well said.
Helpful - 0
Thank you so much
620923 tn?1452915648
AMEN !!! I agree 100% with your sentiments .....I know how difficult this road is as I also travel it with you all.....and I also know that with time, if we can be patient we will see benefits from the surgery and that we can find a new path and course in life, it may not be one we may have considered before getting to a point our path had come to an end, and we needed to find the  next one to follow.

In learning what I cold no longer do, I also found  things I never thought I could do....we just need to be open to see where our Chiari path is leading us.

You are right to say you have your Chiari family and know we are always here if you need us.
Helpful - 0
I guess I’m riding the emotional roller coaster that I went through the 1st surgery and now the 2nd. But I watched a lady’s  chiari journey on YouTube and it was gut wrenching. People don’t grasp the devastating effects chiari can cause. And some of us are so much more fortunate than others

It puts things into perspective and made me realize that I have no idea what future problems I may have to deal with so I’d better live my life to the best of my ability and be so thankful that even tho I suffer it could always be so much worse.

Each of us carry our own burdens in different ways and although it hurts, I have become empowered not just for me but all chiarians.

Strangers crying for strangers and praying for them on surgery days. I’m just so blessed to be a part of the purple bleeding zipperhead family and I thank you for all you do for all of us
I am helped by this community as much as I seem to help them......and you are so right to sue the roller coaster analogy as that fits my journey perfectly.....I have found so many new things that prior to my DX I may have never tried and now I can't imagine my life  not doing these new things.....I feel blessed to have been steered onto another path.....not that I feel blessed to have Chiari but to have found so many new friends ,and possibilities in my life I never would have had without it.
I understand exactly how you view that. It’s like my life changed so drastically. I’ve adopted the motto that I have chiari but chiari doesn’t have me. You’re a chiari angel
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