Saturday, December 8, 2012


One of the reasons I started my blog was to get down in writing what was in my head so I could move on.  Then I find that everytime things get rough I stop because I don't want these thoughts written.  It's seem's too much like whining.  But I am wrong.  Writing it down seem's to help me think things through and create goals to look forward to.  So, time to fess up on what's been going on and keep up while I make some progress.
Those of you who have been reading my blog from the very first entries know my whole illness story.  What I never seem to want to admit is that I am so stubborn that I cannot or could not accept certain things about my illness.  That is probably why each year I attempt again and again to work.  My parents worked hard and raised my siblings and I to work for whatever we wanted and needed in life.  I learned that lesson well from them so it has alway's seemed to me anything else was nothing more than looking for a hand out or whining poor me!  Not my style so... I have attempted 4 times over the last 4 years to return to work.  Each attempt has made me more sick and needing more surgery.  This last attempt needs to be my last because I worked hard, I had a goal of working full time and being responsible for myself and family.  Now of course I am looking at another surgery.  Won't have all the info until I see the Neuro in February but that's besides the point.  Every time I have to leave my job due to my disability I feel like a failure.  I feel like I have let alot of people down, I feel like a whiner.  I have realized that right now is the time to change how I view things.  I am not a failure.  I am a disabled person who tries hard to rise above it.  I am not a whiner.  I'm tougher than alot of people would be in my shoes.  Can I be responsible for myself?  That's a tough one.  A monthly disability check does not take care of basic necessities let alone responsibilities.  But can I deal?  Well I have to learn to.  What I have to learn is that the small check I get every month is not a hand out.  I worked 37 years for that.  So bottom line on me is that it is time to make an attitude adjustment.  I can not attempt work again and I have to learn to be okay with the person I am and being sick does not make me any less of the person I have alway's been.   There , I said it outloud in public so now I have to stick to what I say.

Now onto my Tori.  My beautiful, 16 year old granddaughter who has suffered with one illness after another since kindergarten.  Tori is in bed with Mono. Again.  Tori has had mono at least 1 or 2 times a year since kindergarten.  Going through another round of testing and labs the Dr.s have decided that the virus just never leaves her.  It lay's dormant in her blood stream until it's in the mood to flare up and make her sick.  Tori is going through CT's for the Sinus disease that seems to get worse every year.  She will be seeing her neuro as soon as she is better from the mono because they want all new CT"s on the spinal and neck deterioration.
This past month while in the process of all this blood testing, Tori was diagnosed with severe RA.  This was not a surprise to me.  I asked them to test her for it 3 years ago because her father was crippled by it in his early 20"s but I quess it's one of those things that can't be tested while a child is growing.  The day we were told this she just sat and cried , she kept saying I told you I wasn't crazy, I told you I really hurt.  And hurt she does.  This kid has lived for years with pain every single day of her life.  She has been told that she is a hypochondriac, she has been told she is depressed, she has been told she is overly dramatic (this all by Dr.s and Nurses.)  Nope this kid hurts like an 70 year old person and alway's will.  My heart breaks for her and there is little I can do.  I surely can't change it so with my new attitude adjustment what can I do?  Then I got it.  Back when we were told that Tori had Thyroid Cancer I created a special amulet bag and called it "For the Love of  Tori"  So it is time to get busy working and creating a whole line of these bags.  Sales would help me provide things for her, even if it's just a new movie because we have seen every one in the Public Library at least 5 times and not being able to get out of bed much is really boring.  It's an idea, a goal to work towards and it's being proactive about what we are dealing with and not feeling like I'm whining.

So I guess there is whole lot of stuff I have forgotten here but I'm getting the thought process down and feeling good about a way to move forward.  If I have to type it down here as I go along I will feel the need to be accountable and keep striving forward.  Thank you for that ;o)

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