Thankful

(...I'm still mad, but am more thankful for my blessings than mad at Social Security - LOL)


I have the very best neighbors in the world.  They are my dear friends, and they have helped me in small ways and in huge ways.  I love them.  That is all.

Mad

Social Security denied me.  Again.  What, do they think that no one deserves coverage until they are on their death beds?  My kidney function is now at 10%.  Do they think that I will just go away?  No.  But now I am forced to fight this battle when I am even sicker.  I have already put in many many many hours into explaining my symptoms, explaining my daily routine, explaining my every doctor visit and every medication and every MRI, blood test, urine test, and every diagnosis.  I have fulfilled their request to complete endless online forms and requests of faxes.  I have sat by waiting their 3-4 months that they have to look at my information, but 30 or 60 days is all they give me to complete their forms.  But I am at their mercy.  I don't have a choice.  Now I get to file another appeal which requires a hearing before an Administrative Law Judge.  Oh, I'll be there alright.  Bring it on!


It upsets that Social Security can't understand that I have a progressive disease.  It is a known fact that chronic kidney disease doesn't get better.  I could possibly hold steady for a while.  And I did - way back when.  I was holding steady.  And holding down a full time job.  It was when I started declining that I came to the point where I couldn't work any more.  I did my part.  I stayed on working until the very last moment.  I could not have maintained the work schedule that I had any longer.  In my heart, I know that I did my part.  Now why that I have a progressive disease that progressively getting worse, can't Social Security see that?  How much more worse do I need to get before they "get it"?


I'm not concocting a scheme to sit home and rake in their cash!  I have a legitimate disease. I didn't do this to myself.  I didn't drink myself into this.  I didn't smoke myself into this.  I don't do drugs, I don't starve myself or over-feed myself.  I have done nothing to myself!  So why do people who have gotten themselves into a disease get taken care of, while I am sitting home, sick and weak, still filling out their appeal forms?


And don't even get me thinking about welfare and the illegal immigrants receiving government money.  Grrr...

Bad hands

For the past week or so, my energy level has dropped to rock bottom.  It feels like my arms and legs are heavy, like I am under water. I just feel so sluggish.  It's hard to get out of bed. It's hard to get off the couch.  Thank goodness Celena can help with things like getting breakfast and lunch for Hayden.


I have been having "myclonic episodes" in my hands for the past year.  Some days are better than others, but lately, it has been so bad.  As I type, I am momentarily losing control of my hands.  It's something like a twitch, but its where my muscles "fail" for a moment.  I feel an electric jolt as it happens.  And it used to be mostly in my fingers and hands, but I have also experienced it in my arms and legs too.  It happens over and over and over.  If I was counting, It would probably be close to 100 times since I started typing this blog post. I can not even imagine how much more frustrating this would be if I was still working.  I would go out of my mind!!  Thank goodness I don't have to do much typing in my stay-at-home life (typing this blog is frustrating enough!)  It happens when I write as well.  And file my nails, work the TV remote, dial a phone, cut up strawberries, sew on Girl Scout patches, drive, comb Celena's hair, put on make-up, brush my teeth, drink my coffee, etc. etc. etc....!!!!  You get the picture.  My neurologist is sending me to the Emory Movement Disorder Clinic.  First available appointment is in September.  Ha!  I guess I have lived with it this long, might as well hang on until September!


I realize that I am focusing on the bad things that are happening to me.  But I also have good things happening too!  My wonderful neighbors, friends, and co-workers are providing meals for me and my family every Monday, Wednesday, and Friday.  What a blessing!  I am monumentally behind on my Thank You notes.  I hope everyone knows how much their generosity has touched my heart and helped my family.


Also, there has been so many friends who are beyond generous and have gotten tested to possibly donate their kidney to me.  Wow, it sure means a lot that you like me that much!!  I feel honored.  I feel humbled.  I also feel not-worthy.  Have I been a good enough friend to each of these people?  I hope so.  Once I am well again, I'll be able to reach out more to my friends.


I have also had many many generous donations to my Kidney Transplant Fund.  This fund helps with medical bills now and in the future.  I am on I think 13 medicines.  That's a lot of money each month in co-pays.  Plus each time someone gets tested for me, it goes through my insurance and I get the bill.  Trust me, I am thankful to have those bills!  Very thankful!  Anyways, I have many blessings to count.