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Showing posts with label joint pain. Show all posts
Showing posts with label joint pain. Show all posts

Saturday, December 22, 2012

My Dream For 2013


I'm really excited to turn my dreams into reality in 2013! A new career of helping to educate and to advocate for those with chronic pain & fatigue illnesses. I can't do this though without your help. I can't even get my page into the GoFundMe search results until the fund has received at least $100 in donations. I'd be very grateful if you all would help me to help others. Let's make 2013 the year of awareness and change in thought process for the approximate 116 MILLION people that suffer day in and day out with some sort of chronic pain illness. Pain that debilitates and takes away from a person's quality of life! If you don't suffer from a chronic pain illness, if you'd have to live ONE WEEK like we do, you'd understand WHY this is such an important feat.

I, along with approximately 115 other U.S. citizens would be extremely grateful for any help you can give us.  I also need a career, and where education and advocacy is so important to me, getting the seminars off the ground would be a dream come true for me.  The more people who know, and start to understand what people with chronic pain go through day-to-day, the better the chance we'll have at demanding further research.

I'm going to be completely honest here.  I do NOT have any quality of life the way things are.  I try so hard to hold onto my ADL's (Activities of Daily Living).  As much as I don't want to admit it, they're slowly slipping away from me.  I'm only 42 folks, and there are people who suffer like I do that's a part of The Fibro Frog, that are in their early 20's.  Research has made some great advances in the field of Fibromyalgia.  They now have proof that it's VERY real.  It's been proven that Fibromyalgia is a neuro-immune disorder.  Our nerve endings are significantly  effected.  Tests and various studies have proven that we really are having significant pain.  Brain imaging studies have also proven that the reason we're so tired all the time - wake up as tired as when we go to bed - is because we never go into the deep sleep cycle.  We don't get into REM, so we're never getting that restorative sleep that the body so desperately needs.  The old thought process of "There's nothing wrong with these people, they're just crazy and lazy" is now gone since research has proven so much.  Unfortunately, this is still the biggest myth out there surrounding people with a chronic pain condition such as Fibromyalgia.  We need funding for MORE research, so that we can advance on to find out what causes people to get Fibromyalgia.  We need funding for MORE research so we can find a CURE for Fibromylagia.  Most of us would even be completely stoked if they'd even just find a concrete universal treatment plan that would WORK for EVERYONE who's effected.  Right now we don't have that.  We have one pill for one symptom.  One pill for another symptom.  Sometimes a pill will work, then for others it won't work.  Right now, for lack of a better word, the doctors play russian roulette with us.  

Not only do I need a career that I can actually work, since there's no way in heck I could work a typical job, but I need to get the message out.  The message that "we" aren't crazy.   "We" aren't lazy.  My seminar not only hands a ton of information and resources to the person effected, but it also reaches out and shows the people who are NOT effected, how real and debilitating living with a chronic pain condition is.  It opens peoples eyes as to how much more research is needed.  If people doesn't understand the "truth's" of chronic pain, then there never will be pressure put on the government and private proprietors to give more money for more research.  Research that's needed more then I could ever convey.  I'm reaching out to everyone, to ask that you part with a couple bucks donation so I can get this dream off the ground.  If you're able to donate $5 or more, then you can donate via my GoFundMe account by clicking HERE.  GoFundMe has a minimum donation amount of $5.  If you aren't in the position to donate at least $5 but want to contribute, you can donate $1 or more via my PayPal account: jaammull(at)aol(dot)com.  

No matter what, I want to thank all of you for at least reading this and following along with my progress.  I'm blessed that I've gained so many followers in such a short time period.  Less then 1yr, and that amazes me.  I'm thankful and greatful for each and every one of you to have come into my life.  I hope you all have a Blessed holiday season.  Merry Christmas to you all!


Wednesday, May 16, 2012

The FibroFrog Was Embarrassed Due To FibroFog


I've been sitting here waiting for a call to tell me when all of my appointments were rescheduled for, after last Thursday's Building A shut-down at The Cleveland Clinic.  Monday, I told my dad that that they told me I'd be called, but that since my phone number had changed they wouldn't be able to reach me.  I told him I had to remember to call them Tuesday, and give them the new number.  Tuesday (yesterday) came around and I forgot to call them.  I remembered around 6pm when I was on the phone with my mother.  I said "Oh shoot!  They're not going to be able to call me with my new appointments because I forgot to call and give them my new number.".  My mom said that she'd call me today around 1pm and remind me to call them.

At 12:40pm today, I remembered to call them all on my own.  I was soooo proud of myself that I remembered and didn't need my 69 year old mom to remind me.  -How sad is that?  Me, 41 years old needing to be reminded of things from my mother that's 69 years old.  I picked up the phone and called the direct line number to my doctors nurse.  Her name is Pat, and she's really sweet.  When she answered I told her that I'd been waiting on my rescheduling call, and it dawned on me that they wouldn't have any way to reach me because I needed to give them my new phone number.  She quickly said "Oh...I think you gave that to me last week didn't you?".  I was genuinely confused for a moment and told her "No, I don't think I did?".  She said "Yeah, I'm sure you gave it to me last week.  It hasn't changed again that quickly has it?".  By this point, I'm starting to really feel embarrassed.  I told her "No, it's only changed once in the last 5 years".  She told me to give her my social security number so she could check and make sure.  Sure enough, she read off my new phone number to me.  I was really embarrassed, and told her yes that was the correct number.  I told her I was sorry, that I honestly can't remember giving her the number last Friday.  She laughed a little bit, and then said something along the lines that she does that sometimes too.  I felt like a complete fool!!  I laughed a little and told her that I've really been having some pain and insomnia flares, and that I guess this proves that I must be having fibro fog flares too, that I really need my appointment.  She told me if I don't hear from the scheduling department within a few days, to give her a call back.  I seriously was mortified though.



I know that I shouldn't be too hard on myself about something trivial like this, but I can't help it.  I just can't describe how I felt when the nurse said "It hasn't changed again since last week, has it?".  I'm happy no one was downstairs to see me, because I'm pretty sure my face was probably as red as that question mark above LOL.  It's little things like this that get to me.   They make me detest this illness all the more.   They remind me that I am sick.  Things like this scare me too.  If I'm already this forgetfull at 41 years old, how will I be when I'm 69 like my mother is?  Will I even be able to function?  Between the memory loss and pain will I have to be put into a nursing home?  Of course, this type of thinking leads me into the depression that already accompanies fibromyalgia.  Makes me think things like "Yeah...this is why my husband walked out on me and wants a divorce"....."This is why I'll probably have to live the rest of my life single and lonely".  Just not good thoughts at all.  Even typing this out, is now making me tear up a little bit again.

It's funny, how something so little, can spiral into so many feelings.  So many emotions.  Now, I know "hate" is a strong word, but I can honestly say that I hate fibromyalgia.  I hate living every day of my life in pain.  I hate being scared.  I hate not remembering things.  I hate not being able to sleep.  I hate that when I do sleep, I awake feeling like I haven't slept.  I hate the stiffness in my joints when I wake up...and after I've sat for awhile without moving.  I hate not knowing if I'll be able to go out and do something as simple as pushing my granddaughter around the block in her stroller tomorrow...or even later today.  I did that today, by the way.  Courtney, my 16yr old daughter, and I were watching baby Leah today for a bit while my son and daughter in law went to a doctor appointment.  Court asked me if I wanted to go with her to take Leah for a walk.  I told her yes, that I'd enjoy getting out of the house and into the sunshine.  By the time I returned home, I felt as if someone had stuck an I.V. into me and sucked all of my energy out.  I had to will myself to get up to go to the restroom.  I'm in such pain tonight from it, that I can barely walk.  I hate that I can't even do something as simple as going for a walk on a nice spring day.  I'll say it again.  I hate Fibromyalgia!