Terrible Night Last Night

[redkim]

I had a terrible night, worst night in a while since my PFD surgery in 2009.  I am sure you're all accustom to those days when it hits you so bad that it feels like it will never get better, after two extra stength tylenol, laid in bed for two hours and it just woudn't go away, it just got worse.  So I took my migrain medicine which knocked me out for a bit.  I woke up later and my throat was numb, with swallowing problems...and  I had a couple months of Chiari free pain...other things, well thats different.

I woke up better today but fearful of a repeat of last night.  I can still feel the pressure coming in waves.

I am working on a narrative for English, a "fictional" story about Chiari and I am trying to not cry as I write it.  Sometimes I get so down about all of my pain, my neck, my lower back, my hip...it *****.

I also got laid off and applied for EDD.  I had a phone interview about going to school and the woman told me I could and I started to get checks.  Now they are saying they have to reevaluate my case and that the woman who told me I could go to school should never had said that, so my "income" might be cut.  The stress of it all is just making it worse.

I hope everyone is enjoying their weekend, if you want to join my pitty-party...chime in. :)

[selmaS]

  I am glad u r able to do ur fav activities and not be bothered by them...and yes, stress will trigger many symptoms...I noticed more symptoms when I am stressed.

  Right now I am relaxed and feeling ok...having an impromptu visit with my DD in NY.

Sorry about ur job, but u were very stressed in that position if I recall correctly and mayb it is a blessing in disguise?

They say when one door closes, a window is opened...we just have to know to look for the window and not another door : )

  Hope things calm down for u, and u get the school things straightened out and u can feel better.

    "selma"

  

[redkim]

hi Selma.  I am still skating, an hour a week.  I still ride my motorcycle, usually a couple hours a month, not very often.  I lost my job in December and started school full-time, 15 units mid January.  I am still taking art classes as well...staying busy :).

I don't feel bad after skating, I am usually tired after I ride the bike, but I don't feel sick.  I think its all the stress.  I am trying to relax, skating and walking helps with that.

How are you doing?

[selmaS]

  Hi Kim...it's been a while...I had no idea u lost ur job! I am so sorry to hear it....u r no longer Ice skating r u?, or riding ur motorcycle?

  I am sorry u had a bad night, but it sounds like u have a lot of stress and even post op stress can trigger symptoms and pressure.

All I can suggest is try to relax....I know u r a positive person and u will find a way...how is ur art...u still drawing?

     Glad u stopped by, but so sorry u r having a rough time

            "selma"

[nsalem656]

I meant in home support services does. Everytime I ask for hours they don't give it or reduce it as if I have help. SSI is no better. It took me three years to win ssi and I had to get a lawyer involved. My lawyer and I knew things that the other didn't so the lawyer needed me more than he thought. I always felt bad that I didn't get much in backpay to give the lawyer in the end. My parents had to help me because of the medical bills couldn't be the county hospital and the government said your parents gave you too much.

[redkim]

I agree, family can't and shouldn't be expected to do everything.  I don't even ask my husband to be the sole person to listen to my grip. I don't see how SSI could think your roommates could take care of you like that!  I know its hard to get SSI, and I can believe its hard to work with them too.

[nsalem656]

I don't even have savings. You can't have good savings and be on ssi. I have two roommates and they have tried to use that against me when fighting for in home support as if they can do everything I need. If they are required to do everything I need by law they would just move out so they stop being required to do it and no one would move in to replace them. The solution is to give me independent caregiver for everything I need and stop treating my roommates as required family members. Family members shouldn't be required to do everything either.

[redkim]

I hope your surgery goes well.  I too had more bad days a week than good days, which prompted me to have the surgery.  Now I have a small few bad chiari days a month.  Other pain is daily now.

It's weird.  I email EDD about wanting to go to school.  They sent me information on CA Training Benefits Program and I had a phone interview.  The woman asked me a few questions (I wish my Chiari brain would allow me to remember them) and said to just mark the box when I started school.  I asked her if that meant I could take classes and she said yes.  So I mark the box the week my semester started and they flag me.  Now the guy says she should have never told me that.  EDD told me in an email if they approved my benefits I would start to recieve checks - I did.  So besides her telling me I was approved, I also started to get payments.  Now they say it a 50/50 chance and I am waiting for their determination...I don't know how long that will be and in the meantime, I won't get any checks.  Even though I have been looking for work and applying at places.

You try to better yourself and you get kicked around.  If it wasn't for savings we would be in deep trouble.Tough times - and being in pain doesn't make it easier.

Good luck to you!!

[nsalem656]

I'm still pre surgery but I've been having more and more bad nights than I care to count. I'm going to school and I have ssi but what I don't get is why the government tries to punish us for going to school. I've been fighting for in home support and they keep using school against me like ssi means you can never be financially capable of taking care of yourself again. Ironically at the same time they make it impossible to survive on ssi even ssdi without a job or other charity funds.