The Countdown is On! A Change is Coming!

After being gone for so long from this blog, it looks like I'm coming back to it soon.  We've had a roller coaster ride over the last 9 months.  Some was fibro related, other things became fibro related because of the stress that threw me into a flare from dealing with it.  I've got a post started I'll share with you next week about the craziness around the Martin house.

When I started this blog, I was in constant pain that pretty much never got lower that a 7 and when it did, it didn't stay there long.  I found an awesome pain management specialist and have learned a lot about how to pace myself.  Because of this, I am managing my pain pretty well and keeping it in the 4, 5, and 6 levels most of the time.  I still have plenty of days that hit an 8, 9, or 10. I'm just blessed to have some good days in between them now.

I've had lots of time to think about what I wanted to do blog wise. I thought about just abandoning it - for a very short period of time.  I thought about how boring my pain is this days and figured if it was boring to me, it probably would be to you guys as well. I definitely feel that I'm to be an advocate for those of us who suffer with chronic pain. So I'm coming back.

I'm coming back with new ideas that I want to share.  In addition to hearing about how fibromyaliga rules my life, I want to share research information, articles on our illnesses and have some guest bloggers come in.  I've also thought about doing some giveaways.  :-)

I don't know about you but housework, grocery shopping, menu planning and cooking can really be HUGE problems for me when I pain is really bad.  I'll be sharing ways to get these things done with your pain and how to keep these things from increasing your pain.

We need to relax whenever we can but I have a hard time just sitting watching TV or playing on the computer.  I'll be sharing ideas for activities that will be both relaxing and fun.  Right now I'm thinking about book reviews, blog reviews, crafts and sewing/quilting.


Sundays will be a no writing day.  My plan is to share something with you that had an impact on my life that week through pictures and/or a Bible verse.


I'd love to hear what you think about these ideas.  Is this the kinds of things you'd like to see?  Should I stop writing all together? What do you want to see on the pages of My Life with Fibromyalgia pain? Please let me know through a comment.

I'm Back! I Hurt! What's New?

I can't believe that I've not posted since January 14!  So much for part of the life changes I had planned. I did a update on how they are coming along over on Rambling Thoughts of a Southern Lady. 

It's been crazy around here since Thanksgiving. I wrote about some of it  here and here.

Between the holidays, kids coming to visit, sinus infections, a reaction to a new drug, the flu and the stomach flu, not much of what I planned has actually happened.

My pain has gone up and down much like a kid's see saw.  It's been a Level 4 and it's been a Level 9 it even hit Level 10.  Sometimes it's been at both ends of the scale in a 24 hour period. I can't take the flu shot because I had Guillain-Barre Syndrome when I was 14 but I've been blessed to not have had the flu for several years.  This year I got the flu.  For about 4 days my pain stayed between a Level 7 and Level 9.  I probably could have taken more medicine for the pain than I did.  Since I was also taking antihistamines in an effort to try and open up my sinus passage and I was home alone much of the time, I was afraid to take much more that my normal.  I would rather hurt and still be here to see my grandchildren grow up than to take a chance on mixing the wrong medicines or amount of medicines.

About a month after that I got the stomach flu that was going around.  I woke up one morning and felt pretty good and I was loving that.  A couple of hours later I took Mr. Supportive to work so that I could have the car to run errands.  The errands didn't happen.  I suddenly felt nauseous and got my window down just in time to deposit breakfast down the side of the car in the parking lot where he works. Right outside the big double glass doors.  The doors that his co-workers were standing at watching the morning unfold and drinking coffee. Of course the guys came running out to see if they could help.  Sigh... Talk about wrong time, wrong place.

I headed home and made it about 3 blocks when I knew I was going to be sick again.  Since I knew the Goodwill store had a clean bathroom, that's where I went.  I grabbed a washcloth off the rack on the way to the back of the store.  Thankfully I was able to make it into the bathroom and wet the washcloth before I got sick again.  After what seemed like forever, I was able to pay for my wet washcloth (or at least I hope I did), get to the car and make it home before I was sick again.  Once again my pain was up between a Level 7 and a Level 9.  After I had been home for a little while, it hit a Level 10 that I hadn't experienced since 2009. Between the pain and throwing up more than I did in both my pregnancies combined I barely moved for almost a week.  I was in a lot of pain when I had the flu but it was nothing like this.  This was the pain that I had before I was prescribed any kind of pain medication but this time I was having it taking 60 mg of Kadian every 12 hours and 30mg of morphine every 3 or 4 hours.


But as the saying goes, this too shall pass and it did.  It took me a while to build my strength back up but I did and started getting back on track.  For a while...

This is where this part of the story ends and a new chapter begins.

 

It's Just the Way Fibro Is

I was shocked when I saw that it had been ten days since I wrote the last post!  I’m not sure why I was shocked because the last ten days have been the usual fibromyalgia ups and downs.  My pain has been higher than normal at a Level 8  instead of my usual Level 4 or 5.  I’ve been trying to pinpoint something that I did that may have started this flare so that I can avoid that in the future.  In true fibro fashion, there is nothing that I can think of that caused it.  It’s just the way fibro is.

I have got so much that I need to be getting done and just don’t have the energy for it.  I’ve said lately that being chronically ill is like having a job.  I just got a certified letter from my Long Term Disability carrier saying that my benefits are only approved till October 28.  While they admit that I cannot go back to my job as a paralegal, they are reviewing my file to see if there is any other job that I can hold.  It apparently doesn’t matter if the job is nothing remotely like what I’ve done before or doesn’t even pay what my benefit it. If that wasn’t enough to make me nervous, my doctors haven’t sent them the requested records.  So Monday morning, I’ll be on the phone begging the docs to send my records in. When the adjustor told me how my former employer had the policy set up, I felt like once again the company was pulling the rug out from under my feet.  One of these days, I’m going to write about my last year at work.  I will always feel that my supervisor had decided that I didn’t “fit” with the rest of the department and used my illness to get rid of me.  Since I have my appointment with the Social Security Disability doctors August 30, I hope I’ll have my SSD approved before they try to pull my LTD benefit check.  Without either my LTD benefit or a SSD check, we will lose our house. My illness has already forced us into the Home Affordability Program.  If you miss a payment when you are in the program, they start foreclosure.  I see no way around that.  Where we will go or what we will do is something that I refuse to think about.  I prefer to pray for God’s direction and His blessings that if my LTD benefit stops, my SSD will start.  All of this emotional and financial strain is just the way fibro is.

Financial problems are nothing new to those of us who are disabled by our Fibromyalgia.  Each day, some of us have to decide if they will have their pain pills refilled or buy groceries.  Some of us who are still working way beyond the time that they should have stopped, has to decide if they can go on for another day, week or month.  Some of us have our bodies make that decision for us when we literally can no longer put one foot in front of the other.  I don't understand how Social Security Disability can justify not having a category for Fibromyalgia.  They have to see how many people are effected by it based on the applications that they receive.  We've worked and paid in to the Social Security system. Why do they make it so difficult for us to get the financial help we are due.  Most of us live a two paycheck life.  When one of us looses that paycheck, it sends our whole world into a tailspin.  Facing the financial unknown causes so much stress that our pain skyrockets.  How do you make responsible decisions that need to be made right now when your pain is off the charts? It’s just the way fibro is.

Mr. Supportive and I have tried to explain fibromyalgia to an older family member many times.  This person believes that I am in pain.  At the same time, they don’t understand that the pain is always there, sometimes better, sometimes worse.  Whenever we talk and I say that I’m more tired than usual or the pain is a little worse, they want to know why.  They ask if I went to bed on time, what I did do make it hurt more.  For several years, I tried explaining it each time.  I no longer have the energy for that.  Now I say “It’s just the way fibro is.”

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. 

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

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