Not me ~ but just in case.

disability

“I am NOT going to end up on disability”

“I will do everything in my power to keep that from happening”

These are two quotes you will hear me say.  I do not wish to offend anyone on disability.

I have a lot of friends that are on it and well deserved so.
I do know it is not anyone’s choice to be so sick and in so much pain that they can no longer work.
I do know those on disability would rather be well and working.

If you know me or have been reading my blog you know that I am a planner.

I currently read approx. 7 online support group pages.  There is not a week maybe even a day that goes by that the topic of disability is brought up. Often it is about being denied or needing more documentation. I know absolutely nothing about applying for disability, the requirements and what that means once denied or approved.

The one thing I do know is that I need to have a well documented health history.  I decided that I would begin to keep a very detailed medical log not only for myself but to create a family history for my daughter.

                                               How do I plan on organizing all of this data?

I think most people would mean to start keeping track of their medical history over just the past few years and forward.

Not me, I filled out the medical release forms going back to 1995 from my GP, dentist, chiropractor, hospital, and 2 Rheumatologists.

I read each and every page, noted important dates and made a timeline.

As I went back in time, I saw all of these symptoms that I had complaining about for such a long time.  There were so many signs that I had something wrong for most of my adult life.

purple folderI bought a thick 3 ringbinder(purple)  and added our Warrior emblem.  If I am going to do this it’s going to be blinged.

Each specialist has their own tab with their business card/contact information.

The first page states date, current diagnosis, & medication.  The second page is my family history.  The third page is a very simple timeline showing when I started seeing doctors for each symptom and when I was diagnosed.  I am going to create a summary page showing the medication, dosage, the doctor who prescribed it and for what symptom was it treating.

I began to really struggle with sheer exhaustion. Not the typical tiredness. This was much more.   I was sent to a Neurologist.

I felt so prepared to answer all of the typical appointment questions.  She started firing questions at me and I had all of the answers right there in my purple folder.

“What meds are you on?”, “Why are you here?”, “What have you been doing?”, “How long have you been diagnosed with each illness?”, “Do you have any family members with this or with that?”

She decided to send me to the lab for an entire “blood work-up”.

The results arrived in the mail and as I read them I saw some results that showed certain levels high.  I looked back in my binder and saw that all past blood tests showed the same results and every time that they have checked – the Doctors always mark high but state they are fine.

I googled what that could mean.  It could mean that I am anemic (low b) or experiencing liver problems.  Are these things that can be ignored?   How any times have lab results been sent to me and I just read the top of the results that said everything is within range without even knowing what all of the data means?

No matter what is found.  I felt better having my life’s health history in a 3 ring binder.  I had documented proof of my symptoms.

I was sitting here thinking ~ I am so organized and prepared.

How should I conclude this blog?  I can’t. Not yet.

It struck me.  How many of my fellow Fibromites who have just been diagnosed have any idea what to records to keep.  What they should be doing to prepare for doctor visits?  Have to organize their files? What about what to do when it becomes difficult to keep working?  How do you prepare for the future?

I have my medical records highly organized and I still know nothing about disability, the requirements, what happens if denied or if awarded.

I need to educate myself.  I want to understand so that I can help others when they post their disability questions.   It is going to take a lot of time and reading to understand.  I need to add this information and more helpful sites to our page. I found a few sites that will give all of us a good start.  If you know of any good sites to help others log their information and help in their research.  Please post here as a comment and I will add to our page tabs.

http://www.theacpa.org/fibrolog/default.aspx

http://www.ssa.gov/dibplan/dapply.htm

http://askjan.org/media/Fibro.html

http://askjan.org/media/accommrequestltr.html

It is my hope that the work of organizing the past, researching  &  preparing for a future fight for disability be a complete waste of time.

I will continue to be an educated, prepared ~  Fibro Warrior ~ Living Life!!
warrior

TMI?

whoa there   I think one of the overused new slang words has to be TMI;   The definition listed in the onslang dictionary says; “Used when someone says something that’s a little bit too personal for the current circumstance; when someone tells you something you didn’t need to know and especially would rather have not known; etc.”

In very simple words; TMI = Too much information.

I have and continue to be very open about having Fibromyalgia and the 12 evil sidekicks. I will say it in a matter of fact statement.

Why not? It is what it is.

In most cases it is because I am being unusually slow doing something, like walking, using a calculator, picking something up, not being able to remember something or having difficult saying a complete thought without mixing up or missing a word. They might expect this behaviour of a 92 year old but not someone of my age.

This spring we had three family members pass away in a very short time.  I took it really hard. One was my great Uncle altho I didn’t see him much was one of my biggest supporters of my writing. Another had lived with for Fibromyalgia an it’s evil sidekicks for 30 years. Over the past five years she had given up the fight.

Struggling with my daily life and trying to deal with the losses was creating such extreme pain and depression leaing to one of my worst flares ever. The lack of sleep, pain and fog was making it difficult to fight off the flare.

I didn’t feel like a Fibro Warrior ~ Living Life.   I felt defeated.

I was having so many memory problems.  It wasn’t the type of memory problem where you forget where you put your keys. This was important daily tasks and having trouble staying awake and concentrating. It scared me.  I was a mess.

I called my Mom in tears telling her about it and that I had been writing about it in my support group, facebook page and blog.  Her reply was that “maybe you shouldn’t tell everyone everything.” At first I do like I always do and take what my Mom says to heart.  Maybe she was right.  I mean maybe it would come back to hurt me somehow.  I always worry about my Corporate office reading my page or blog and deciding that maybe I can’t do my job anymore.  Even tho I know that is not the case.

I usually write about the struggles of trying to balance work, marriage, friendships, being a mom to a13 year old and life in general while dealing with all of my medical issues of Fibromyalgia an it’s evil sidekicks.

I write not only as therapy for myself but to let other Fibromites know they are not alone, so that other friends and family understand what I am going through without me talking about it all the time. It is something that I want my daughter to read when she is older. I hope it helps her understand why I had to make various decisions. I pray she doesn’t ever get diagnosed with any of this but if she does I will be able to give her a copy of my journey and experiences helping to educate her land let her know it isn’t in her head and she is not alone.

I sat down the evening after talking to my Mom to read my FB page and the support groups. I have over 4600 likes on my Facebook page where I post positive encouraging words and information about Fibro an it’s evil sidekicks.

At the same time I think I understand how my Mom feels.

Her an previous generations would never consider airing their dirty laundry in public.  They wouldn’t think of telling strangers about their family member who is thought of as a hypochondriac or how they spend most of their life in a bed or chair.

After being diagnosed I wanted to able to tell others look I do have something that is real. I began researching Fibro and had the “ah ha” moment. It finally made sense. I could see where from the age of 18 I had been experiencing or treating so many of the symptoms.

Thank goodness for those who were willing to tell what others consider “TMI”. I don’t know how I would have gotten to where I am today without the support and information from Online support groups and pages with people willing to “air their dirty laundry” to help the newbees. They gave me such comfort, validation, treatment options. These people are willing to share their personal struggles and successes, offering an ear, shoulder and suggestions to other who may not be receiving that from their family, friends or co-workers.

I wanted to repay the kindness of others.  I want to continually educate myself an others.  We are not professional counselors or medical professionals but in most case we have more to offer having personally. We have been there tried that and better yet we are free.

I always encourage others to see their Doctor, Therapist, Acupuncturist, Chiropractor, etc. If they dont help you keep trying to find someone that does help.

Thanks to others sharing online I have tried acupuncture, cupping reiki, certain medications and supplements and changed my attitude (most of the time) that have all been successful for me.

It is obvious after reading this post that when it comes to my approach to being a Fibro Warrior ~Living Life there can never be TMI shared about Fibromyalgia and it’s evil sidekicks.

Keep Sharing, Keep Learing, Keep Fighting!

I am a Fibro Warrior ~ Living Life

warrior