Update and advice

General What's New With You?
#1

It has been quite some time since I posted. Things have been up and down. Symptoms have worsened. I left work due to other reasons in addition to my health. I felt that I would be able to live working part-time and manage the symptoms. I am not sure that was a great idea. Symptoms are making it difficult to function daily. Over the last several years, prior to diagnosis, I have been unable to consistently hold a job. I have lived off of savings and working part-time. Since I am no longer working I no longer have health insurance. Needless to say, things are getting extremely difficult. I did not expect things to be easy, so I am not blindsided by any of this. I would appreciate any advice or just words of encouragement anyone can offer.

Thanks!

#2

Great to hear from you New2Chiari. Sorry to hear things are up and down for you but I read a great strength behind your words. Have you tried any relaxation techniques? I find mindfulness meditation is helpful as it has taught me how to stay in the moment which is really helpful when our worries and anxiety threaten to take over. A friend recommened the Frantic World site to me ... they have some brilliant short guided meditations which you can download.

#3

Hi Jules,

Thanks for taking the time to reply! I am away from my computer a great deal and unable to check/reply to posts. Thanks for the suggestions and your encouraging kind words. I have some relaxation programs, cd and apps. Did not think about trying them! Thanks for the suggestions!

#4

Hi,

I thought I would chime in here and say first, I hear ya sister! I also cannot work due to Chiari. I would like to suggest checking out Obamacare. It was difficult for a time as they placed me in a managed care situation that removed me from my amazing healthcare provider, I wrote a letter and got what I needed. And, I pay a $3 copay for whomever I see and it needs no referrals, though sometimes the doc does : )

So, take care and feel free to contact me if you need to chat.

#5

Hi Deaeverbe,

Thanks for chiming in. I am glad things are working out with insurance. Sounds like you have a great plan. I tried Obamacare shortly after I left work. I did not qualify for discount coverage rates. I have not been designated as disabled and I live in a state that rejected federal funds to provide coverage to low income. At least that is the way I understood it. I have an appointment with a new system of clinics that may be able to help. I have struggled to hold down a job for the past 13 years. It has just become so difficult to function: problems concentrating, memory, so many health problems -too many to list! I am out of options praying for relief and trusting it will get better!

#6

Make sure that taking care of yourself is a priority, even on your good days. You can get through this! We have your back!

#7

I am sorry to hear about your symptom, have been operated..?, well I was new diagnosed..I tried very much to cope and accepted my condition..just like you are I have to resign from my job..and it is very difficult situation when it come to financial responsibility however our health is most important..once you can accepted our condition it will be easier to realise to take each day as it come...I used to be house bound and really struggling..but I fight through it..I took magnesium oil each day..drink plenty of waters..start walking 5 minutes each day...its seems that magnesium and bathing with bicarbonate soda help me coping with my pain as my medicine done nothing..meditation...a lot of rest and eating frequently seems ease the pain as well..joining this type of group make me feel much better as I realise that I am not alone.

But just remember..each day I am sure you getting better..go to your specialist..express your concern..I understand it must be difficult for you as you are unable to get the insurance..is there any local church that might be able to help you at all? My pray go with you...

#8

B2wc

Thanks for taking the time to reply. At helps to hear from people who unstand and share the struggle. Like you, I've found rest, light exercise, eating right have all proven very helpful. I really must find ways to focus on taking care of myself in the mist if all the chaos in my life right now. I've found that stress intensifies my symptoms. There is no way of escaping stress. Will work on finding was to reduce and change how I manage it.

#9


Well, anytime you feel alone and like to share your burden we are here to share with you..I am glad that I found this website...so chin up..try to relax..I know it is easy to say than done it..however I am in the same boat as you are..and i am scare terribly what is going to happen with me?..but I believe there is a light at the end of this tunnel
New2Chiari said:

B2wc

Thanks for taking the time to reply. At helps to hear from people who unstand and share the struggle. Like you, I've found rest, light exercise, eating right have all proven very helpful. I really must find ways to focus on taking care of myself in the mist if all the chaos in my life right now. I've found that stress intensifies my symptoms. There is no way of escaping stress. Will work on finding was to reduce and change how I manage it.