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jamiem

Distinguished member
Joined
May 4, 2012
Messages
151
Diagnosis
08/2012
Country
US
State
TX
City
Mabank
I left my job after 20 years yesterday. I have 12 weeks of sick leave and then will have no insurance or income. I have lost my ability to speak coherently. I cry so easily and without provocation. My pulmonary test are compromised but not eligible for oxygen yet. The ventilators have given me thrush. I have bulbar ALS. I am just learning to live with my life as it is. I am on this forum because I feel so alone and frightened of each day. I am really not into self pity and have a God journal that I post in frequently, but I would like to reach out out to each of you and just know that I am not alone on this journey.
 
So sorry to meet you here. You are not alone on this journey. We are here to give information and friendship. I too am a Bulbarian. Check with your local AlLS associatîon for help.
 
jamiem,
You are most definatly NOT ALONE!

I too am a Bulbarian. (tuth be told, we are the smartest ones, that's why they take our voice first. So we don't tell them all how to run the world. LOL)

You will find an unbelievable amount of support, knowledge and friendship here with your forum family.

Each day is "the new normal" embrace it and live it up.

Share what you can, ask what you need, and don't be shy. We know what your going through, really! Hard to believe, but there is not only life after ALS, there is some amazing stuff going on.

I hate my diagnosis, but I love my forum family!


Cheers,
Casey
 
Hello

So sorry you had to join us here, but you will find great support.

Immediately please apply for SSDI--like Monday. It's automatically approved in ALS cases--and medicare begins the day it begins (unfortunately, after 5 months off work)

In the meantime, contact the ALS association in your area for loaner equipment for things you might need now--such as that bipap for breathing if it's an issue already. They should have them, and a pulmonologist can give you the settings. O2 is generally contraindicated in ALS unless there is accompanying lung dysfunction according to my neuro.

With the inhalers--please be sure to brush your teeth after using them--that will help prevent future thrush outbreaks. In the meantime, they make a nifty med that helps with it--and also numbs the belly if you have it there, too (I have bad lungs--too many yeast infections to count from the meds)

I'd try again for the lung support if you feel you need it. Bi-pap earlier than later is always best as it conserves your energy for other things.

If the crying at the drop of a hat isn't just your depression from the diagnosis (which would be understandable!) there are also meds that can help with what is called "emotional liability" which can cause abrupt crying jags and other assorted things--but it's treatable. Believe it's neudaxia (don't quote me on the med)

Please ask any questions you have. You'll find all the support we can offer 24/7
 
Off to moderation again, sigh. Put in some info that I hope will help
 
I already love and respect each of you. I have hovered in the forum for weeks. But decided to be actively involved tonight. Prayers for each of you and thank you for your support.
 
Welcome jamiem, I too left a job just after the 20 year mark. I missed working at first, but it was the right thing to do and I adjusted to the easier pace of things quick enough. If you're eligible for SSDI and Medicare they starts 5 months after your last day of work (file now). I know what you mean about crying, it's just weird - I can't listen to some of my favorite music with out tearing up.
 
Welcome to the forum family... sign up for your disability SSI and SSDI asap, I believe that if you qualify for the SSDI the Medicaide starts right away. Not sure I have those right, I'm always screwing them up.

As far as the laughing/crying, part of it is just how we're dealing with our diagnoses... but part of it is attributable to the ALS. Talk to your neuro and get some medicine to "smooth" things out for you, there's no reason to be feeling more crappy than we already do!
 
Joe, thank you. I will pray for you everyday. I am just in the first days of this (unemployement) and am trying to find out who I am. I am not a crier, but I have become one! You are so wonderful for writing me back.
 
Remember that you're the same person today that you were yesterday, and before your diagnosis. The only thing that has changed is your knowledge about what's happening. Stay as positive as you can, ask for help when you need it, and don't overdo stuff that will set you back. Our motto here is basically "it is what it is"...
 
You will read.There is no treatment for ALS. Not true! positive attitude never give up or into als. And of course prayer

It worked thirteen years for me

Hang in
 
Oh Casey you are such an inspiration. Thank yu
 
Sorry you had to be here but Welcome :). This forum is fantastic because of all the wonderful people here. Sign up immediately for SSDI & Medicare. Find out which ALS clinic you want to go to/or can go to and sign up to go. Contact your local ALS association & sign up. Contact your local MDA/ALS association & sign up. Take it from me. I didn't listen to all the advice here about signing up ASAP and regret that. My GP told me crying was normal & a part of grieving about being told I have ALS. I still have my bad moments with crying but not as bad as it was at the first. I pray everyday to GOD to give me a calming peace of mind. Do you have family & friends to help you? Take each day as it comes and try not to think ahead.
 
on here Jamiem you are never alone...Al was a big help on here and now that he has passed his wife Lee wants me to get on here and help others...I too am a person with ALS and I am here to talk and be an ear to listen...always...Pam
 
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