Monday, March 25, 2013

Living With Disease - How Did I End Up Here Again?

We found these beautiful shells during a walk along the beach yesterday.
This morning I realized I didn't want to read.  Or blog.  Or write.  I haven't been journaling much or posting here often.

Uh oh.

Then I went online looking for arthritis/fibro support groups and found none anywhere near where we live, here on the coast or up north.

Then a familiar feeling flooded through my entire being.

It's one of those days when things have come to a boiling point and I didn't know where else to turn. Then I remembered the solace I find here.

Once again I am under review and my health is being questioned by someone who doesn't have a lick of medical background and likes to make someone like me and my doctors jump through hoops and thinly veil threats that if we don't, my financial livelihood will be jeopardized.  Nothing has changed and everyone keeps telling me because of that I shouldn't worry, they're just doing their job.  But I doubt they consider how they make those of us who are legitimately ill feel while they're just doing their jobs.

I knew from the time I was originally approved that I would be reviewed from time to time, but I had no idea it would be like doing it all from the start all over again!  Again.  The first time was awful enough.  3 years, 2 denials (all because of a paperwork error!), 2 attorney's and going in front of a judge.  The process is evasive, humiliating, upsetting and extremely worrisome.  For me.  Because that's what I do.  When something serious comes up. I worry. A lot. A. Lot.

I feel like I'm being put through the ringer again.  I am scared.  I am mad.  And I don't know how I am going to go through this every three to four years for the rest of my life (or until I reach the age of 'official retirement').  The rest of my life!

To say that I hate like hell that I, that we, are dependent on the fairly minimal income I receive each month is an understatement of epic proportions.  It's a Godsend and a prison sentence.  I have been wracking my brain every day since this review started trying to figure out a way I could replace that income, at the very least that amount guaranteed every month, with this uncooperative body and I keep coming up short.

I feel so helpless.  Useless.

And I hate more than anything.

Keeping my burdens inside isn't healthy, so I am trying to release them, pray for the best and not let what I cannot control control my life.

I leave you now to watch The Prince Of Tides to the end for the first time.

Thank goodness I stocked up on tissues last week!

And Friendly's chocolate covered black raspberry ice cream bars.


Susan Hemann said...

I couldn't sleep and was going through the blogs I follow when I saw your post. I know what you are talking about. I have been there and am in the same boat as you. Do they not know they hang your life in the balance until you get the approval again? It's horrible and I understand why you would be down. I am so glad you shared what you are experiencing, for your good and the good of others in the same boat. I do not have a solution, just a shoulder to lean on during this time. I too go through the "what kind of job could I get if" phase. I do not like being at the mercy of someone who doesn't have the faintest clue what I am going through. XXXXXX Sue

Jo said...

Thank you so much Susan! It saddens me greatly when others can relate to these things while it's comforting at the same time. Because my health is literally able to change hour to hour day to day and because of my body's inability to fight off infection, I can't work in a traditional retail or office setting (and haven't since 2004) so it would have to be something Way outside the box so to speak!

windy city girl said...


When I read this

" It's a Godsend and a prison sentence."

My heart just broke for you. I cna't imagine what it must be like to go through this. As always, I will keep you in my prayers.

windy city girl said...


I read this part - " It's a Godsend and a prison sentence" - and my heart just broke for you. So sorry you have to go through this. I can't imagine what it's like to endure someone questioning your health. As always, I'll keep you in my prayers.

Becky Godlasky said...

I completely know what you mean! I know it's not healthy for me to think that I am the only one suffering, but then it upsets me to think that others might be suffering in the same way I am. Some days are really difficult. Hope it helps you to know that you are not alone.

Jo said...

Gill, I'm sorry I'm some how just seeing your comment here and I truly thank you! I don't know what I would do without your love, friendship & support all these years!

Becky, thank you so much for your kindness! I truly, truly appreciate it!