Honey Bunch

Thursday, September 26, 2013

Gone too long, let me explain

Hello friends and family,

I am so sorry for not being around.  Life seems to continue to change constantly in my little world.  I have been struggling this year.  I decided to come clean to my followers here in the blogging community.  Sometimes we just have to let others know...even though we have been trying to maintain that smiling face online.

Some of you may know that I have been struggling since 1997 with a disability.  In December of 1997...Dec. 17th to be exact, a date I'll never forget, when my life took an upside down turn.  I was laying in bed when all of a sudden I was having trouble moving and trouble with my speech.  I also had some tremors.  My husband rushed me to the hospital.  By the time we reached there (only a 10 minute drive) I was able to walk again and my speech was getting better. The Dr. on call did a number of tests and blood  tests.  There was no conclusive answer.  I was ordered to go to my regular Dr. as soon as possible.  The day I went to see him I was fine.  He ordered the tests to check my arteries in my throat and head.  These came back normal.  I was then sent to a neurologist that specialized in seizures.  Everything there was checking out OK, and I was told this was conversion disorder.  In other words it was a psychosomatic problem.

I continued to struggle with these episodes coming and going, and decided to go to the Mayo Clinic in AZ. in Sept the following year. Of course they run you through tests for every part of your body!  When this was completed I was told I had inverted migraines.  A migraine that instead of being pain in your head, that your body took this pain and threw it throughout your body causing pain and other neurological complications.  I went on migraine medications which did nothing for me.

I then began seeing other neurologists, and I had a new general practitioner as mine had moved.  He sent me to a Neuro-Psychologist.  Who I believe helped me more than anyone had.  She helped me to see that no this was not in my head, that it was real, but that I was going to be OK.  She gave me a lot of coping skills.

I also went to several other neurologists over the course of the years, had tons of MRIs, EEGs, spinal taps, every test that you can think of, but no positive answers and no medications that truly helped me.  I believe it was in 2002 that I again had another neurologist give me the diagnosis of Dystonia.  After looking this up and what it was I thought well it sort of fits.  So maybe we have it right.  I was on medications of muscle relaxers, anxiety drugs, and pain pills. Did some of these medications help,  yes.  But the symptoms did not go away.

Last fall and winter my disability was really raising it's ugly little head and wreaking havoc on my body almost daily.  My neurologist that I had been seeing was no longer accepting my insurance, so I had to find someone new.  I found another neurologist in December, but he turned out to be what I would call a joke.  And I felt like he wasn't listening to me or taking me seriously.  I was getting totally discouraged that I would never find answers or relief.

With lots of prayer and through a turn of events with my daughter in law in Las Vegas. she encouraged me to come to Vegas and see her new pain specialist.  I thought what else have I got to lose?  So  I called and set up an appointment.  WOW! I can only Thank God for bringing this Dr. into my life.  He diagnosed me with Fibromyalgia.   He sent me for 4 MRI's of my total head, neck and spine.  They are finding some difficulty with areas in my back because of these.  However, he felt that there still could be something neurologically going on with me and sent me to a Neurologist who I truly think is great!  Through much testing we have ruled out all of the scary stuff like MS, Parkinson's, Lupus, etc.  My new found neurologist feels that I could possibly have Fibroneuropathy along with the fibromyalgia, but the drugs I am on now "Cymbalta" is what they would prescribe, so he felt that doing the testing at this time wouldn't change anything that is already being done.

With the new medication I am not in as much pain as I was, but that doesn't mean I don't have days that flare up and cause me to do nothing, or sleep all day.  LOL!  So if I am not here as much you will know why.  Of course sometimes it is just because I am enjoying life and enjoying my grand babies.

If you would like more information on Fibromyalgia you can go here:
Prohealth what is Fibromyalgia

and here are some blogs I have found that may help: ( I have not visited to all of them)


PS.  Did you know that Purple and the Butterfly are symbols of Fibromyagia?
I didn't either.  So wear a purple banner with a butterfly once in a while to show your support of
Chronic Pain Diseases.


Toqua's Crafts said...

It is always good to have an answer. I hope you can bring a new level of peace to your lives.

I'm jealous you get to spend time with those boys! I miss them.

The "Other" grandma

reneabouquets said...

So sorry for all that you have been through Becky, but now that they have been able to diagnose you, maybe you will find some relief. Hope you continue to feel better, and know that I am praying for you :) Hugs~ Your scrappy friend~ Renea

Sharon Fritchman said...

Hi Becky. I don't know what brought me to your blog today, but now I know. I will most definitely keep you in my prayers. I am happy that you finally have a diagnosis and some relief from your pain. I will send positive thoughts your way, too. HUGS!!!!!