Sunday, July 31, 2011

My Social Security Hearing Was an Eye Opener

Here's short update on what happened at my hearing. I'm going to write a blog post about the hearing and what went on soon. 

Reading the statements friends and family wrote to give the judge pretty much slapped me into reality quickly.  I cried a lot last week when they started arriving.  Everyone said the same thing just in different words. I had to pick up my records from my GP and reading the notes my specialist had sent her brought on more tears. My attorney quoted my doctors in her brief to the judge and when she read what they said to Bill and I more tears came. (I had never seen those medical records.)  Needless to say,  It was a highly emotional week for me. Either I truly did not realize how sick I actually am or I was in so much denial that I was completely blind-sighted by the facts. 

Apparently someone in the local Social Security Disability office should have scheduled me for both physical and mental health clinical evaluations. Since they weren't done before the hearing, it may be another 4 or 5 months till I know anything. The judge said several times that my file is not complete and needed to be completed. My attorney said that she felt like if he was going to deny me, he would have done that without the CEs being in there. So either he's teetering on which way to go and needs the additional information to decide or he's going to approve me once he has all the documentation he needs in the file. 

I can't help but wonder how much longer this is going to take if Congress and the president don't get their act together. As Christians, we must ban together and PRAY. 2 Chronicles 7:14 says

"if my people, who are called by my name, will humble themselves and pray and seek my face and turn from their wicked ways, then will I hear from heaven and will forgive their sin and will heal their land".

I believe that! We have to pray for our leaders even if we don't agree with them, as well as our brothers and sisters in Christ and even our enemies. If our hearts aren't right, God isn't going to grant us the desires of our heart. 

Wednesday, July 27, 2011

July 27, 2011 - It's finally D Day

It’s officially the day of my Social Security Disability hearing.  Preparation for it has been an emotional rollercoaster of feelings that I never dreamed I would experience. I have gone from being perfectly calm to a total basket case several times over.  My plan had been to get my preparation finished up mid afternoon and then have a relaxing evening followed by a good night’s sleep. Since I’m writing this at 3:36 AM I guess it’s obvious that those plans did not come to fruition.  

It all happened innocently enough. This morning I made a call to our GP to make an appointment for the mother-in-law’s checkup so she could get a round of new prescriptions and refills for the next 12 months.  Armed with Mr. Supportive’s work schedule I was ready to make an appointment for one of his days off next week.  Alas, even the best plans can get sidetracked.  The MIL had 14 days of meds left.  Not a problem right?  Plenty of time to make an appointment.  Wrong!  It seems that our wonderful (and fibro friendly) GP had the nerve to schedule a vacation with her family for the next two weeks.  The nerve of her!!  The next available appointment was 16 days out. 14 days of meds – 16 days till an appointment…. Houston, we have a problem.  Wednesday – as in today, the day of my hearing Wednesday - was the only opening except for 2:00 yesterday (Tuesday). Since Mr. Supportive is using his day off to go with me, if she was going to get her refills then it was up to me. So I did as much as I could toward finishing up my prep work and then took off to pick her up. We had an uneventful trip successfully getting her new prescriptions. I even had a quick discussion of my recent neurologist visit and the signs of wonderful little TIAs that showed up on the MRI.  

Yes, I am exhausted.  Yes, my pain level was up to a Level 7. (This level of pain is the kind that keeps you awake at night, makes it hard to think and act. Your prescription medication only dulls the pain for a short time. You limit your activities in order of importance. You really can't work well.)  It’s still a Level 6.  (You simply cannot ignore your pain for even a few minutes. Prescription pain medications provide you with limited functioning abilities.) Ideally, I would have gone in, taken a breakthrough pain pill, kicked back in the recliner and slept several hours. As much as I desperately needed to, I couldn’t so I dropped her off, stopped by the Kroger Pharmacy (whoever thought to put drive up windows at pharmacies is a genius!), picked up my medicines and headed home.  With a slight detour to feed the dog so he didn’t wake me up demanding to eat, I hit the bed for a much needed nap.  Before anyone asks, yes, we all know that this is not something that I am really able to do anymore. I did it because MIL needed to see the doctor before she could get her new prescriptions.  She had a limited amount of medicine that was not going to last through the doctor’s vacation.  There was no one else available to do it on short notice and it had to be done.  MIL would have done it for me if the tables were turned (and she was not legally blind).  I have come to the realization that my days of doing it even in a time sensitive situation like we had today are extremely limited and I will talk about that in my next post
I have a really hard time judging how long it will take me to do things like this these days.  Pre-fibro I would have had the information printed, collated and bound in a presentation folder in 45 minutes. (Ok, I may be exaggerating a little but you get the point.)  Instead, I’ve been working at this for seven hours.  It’s finally all printed, collated and binder clipped ready to hand off to my attorney in 5 hours!  Since I was so stressed about the hearing last night I slept a total of 45 minutes - maybe. I’m headed to bed for a couple of hours of sleep – I hope.

I think I’m as stressed about Mr. Supportive having to drop me off in front of the building and go park the car as I am the hearing.  The same woman who 3 years ago flew to St. Louis where she had been once 5 years before in a car and navigated the metro rail from the airport to a strange neighborhood stop to meet up with friends is now afraid of standing in front of a building in downtown Memphis at rush hour.  My how fibromyalgia changes our lives.

Survey Shows that Fibro Impacts Life Decisions and Everyday Activities - Did I have a plan when I started this post???

Follow up note: July 27, 2011 3:16am  I've just spent several hours going through and doing a copy and paste into Word on the blog to take with me to my SSD hearing at 10:30 this morning.  I found this draft and don't remember starting it but that's really nothing new.  :-)  There were several posts where I promised to follow up and haven't so I've made a list so that can do the updates.  I added this to the list because a cursory glance at the website did show some links to some potential helpful sites.  Stay tuned folks.  I may just figure out where I was going with this post.  LOL 
Ok I have no idea how I highlighted my note and I can't get it off.  Since I would like to go to bed for at least a little while.  I'm going to move on and come back to it.  If you have any suggestions for how I can fix this other than deleting it please help me turn this into a learning experience.


I had planned to post everyday while I was visiting with my grandchildren about how we find activities that Mimi is able to do with them.  As you can tell, that hasn't happened.  I'm not sure how I did it but I'm "pulled" my right thumb.  I can't hold a pen to write and I've not been able to sew because of the pain.  Typing is also painful so before I go to the doctor, I'm trying not using it any more than I have too. The no use theory seems to have helped but I guess the test will be when I get through with this post.

I can't remember where I saw this posted but it was probably on Facebook.  What I do remember is how angry it made me that the NFA and APF had to do a survey to find out what those of us with this hideous disease have known for as long as we've had this mess. Hopefully there wasn't much money spent on the survey. 

Pain Medicine News, The Independent Monthly Newspaper for Pain Management published
Fibromyalgia Survey Shows Impact on Pivotal Life Decisions, Everyday Activities in their July 2011 issue.  The survey found that those of us with fibromyalgia, diagnosed or undiagnosed experience debilitating as a result of our chronic pain condition.  Well, no kidding. The survey looked at the impact that living with a chronic pain condition, such as fibromyalgia, can have on everyday tasks, parenting, relationships and life decisions.
The online survey was completed by 3,018 individuals living with diagnosed or undiagnosed fibromyalgia (n=2,559) or other chronic pain conditions (n=455). The average age of respondents was 51; approximately 91% were female.
Notable survey results include the following:
  • Almost nine in 10 respondents (approximately 87%) felt they are no longer the person they were before they started living with chronic pain.
  • Nearly all respondents (92%) reported their condition has had a significant impact on major life decisions, including whether to initiate or remain in a relationship, change jobs and/or have children.
  • Of the more than 650 respondents who had children currently under the age of 18, 95% reported their pain condition affected at least one of their parenting duties, such as taking care of daily household and child-care needs, enjoying their children’s milestones or managing their children’s activities/scheduling.
  • Approximately seven in 10 survey respondents (68%) agreed that pain limited their ability to care for their family.
  • Approximately 98% of respondents reported they have implemented some type of adaptation to their daily routine in order to conduct activities and tasks; 75% had made three or more daily adjustments.
“It took two long, painful years and countless doctor visits before I was diagnosed with fibromyalgia, but our survey respondents had an even lengthier process—their average time to receive a diagnosis was three years,” said Lynne Matallana, MS, president and founder, NFA. “My diagnosis has allowed me to work toward managing my pain more effectively, so I know firsthand how important it is to receive one. It is our hope that enhanced awareness and education will help shorten this journey for others.”
The survey is part of an educational initiative, “The Faces of Fibromyalgia,” that launched today through the NFA and APF. The survey was developed through collaboration among the NFA, APF and Pfizer Inc

Sunday, July 10, 2011

I'm Alive and Kinda Well

I'm just stopping by to say hello. I'm working on a post regarding how Fibro completely changes our lives. I'm also working on one about how we can have fun with our grandchildren even with Fibro pain. Unfortunately, I've got something wrong with my right hand/wrist/arm. Using it definitely makes it much worse. Don't know if it's a Fibro problem or an Ortho one. Being out of town makes it more of a challenge because It's been so long since I lived here, I no longer have a doc who will not make snide comments about my pain medication. Plus anywhere I go will be out of network any where I go. I have a brace for my carpel tunnel that helped it but it's been misplaced and I refuse to pay $20 for another one. For now it seems that my only solution is to not use it.

Tomorrow the grandchildren and I are going to make a cake. I'll supervise the ingredients being added and mixed together. It's something we can do together with limited movement for me so my pain should stay down. I'll let u know how it goes.

Cynthia the Fibromyalgia Grandma BlogBooster-The most productive way for mobile blogging. BlogBooster is a multi-service blog editor for iPhone, Android, WebOs and your desktop