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Showing posts with label disorders. Show all posts
Showing posts with label disorders. Show all posts

Tuesday, January 1, 2013

2013 - The Year Of HOPE


On one hand, it seems as if 2012 lasted a decade.  On the other hand, I just can't believe that it's 2013 already.  I know, that doesn't make much sense, does it?  2012 brought some hard knocks for me.  One's that I never thought I could pull myself out of.  I caught myself saying over and over "Gosh I wish this year would just hurry up and get over.  I want to wipe 2012 away and never look back on it".  But you know what?  As bad, ...and trust me, it's been bad, of a year as it was, I still have things I'm thankful for.  If not for having a second opinion from The Cleveland Clinic, I wouldn't have started The Fibro Frog.  Of course if I wasn't sick, I never would've had that appointment, to start this blog either so I have to also be grateful that I'm sick.  That just sounds completely crazy, doesn't it?  Really, it isn't though.  This blog (and corresponding facebook page) has lifted my self-esteem more notches then I ever thought possible.  The feedback I've received about the blog and facebook page, has brought me joy and peace.  Being told "Thank you", and words such as I've helped them out of a dark place, that I've inspired them to keep going, etc. has just meant the world to me.  If not for all of this ....the sickness, the doctors, the pain, the blog, the facebook page, I wouldn't have met so, so, many wonderful people.  People that even though I've never met in person, have stood beside me.  Held my hand.  Picked me up when I've needed it.  I've had some ladies that I've been "friends" with for around 10 years now.  We met on another internet site, and continued our friendship on facebook.  In my darkest hours, when I've felt completely defeated and felt like giving up on everything this past year, they've held me, pushed me, and motivated me. When I fell down this past year, they'd pull me right back up.

When I first started The Fibro Frog, I was doing so much researching.  Spending hours a day looking up information, reading, and studying anything I could get my hands on (or eyes on in this computer world I guess lol) .  The more I researched, and the more I read, the more disgusted I became about the minimal research that's been done on not just Fibromyalgia, but on chronic pain illnesses in general.  It didn't take me long to realize that advocating for more research in these areas, to educate others who do not live with the day to day pain that I, and millions of others, live with was my new passion.  I told my husband, that I wanted to slowly put together a seminar on living with chronic pain.  I told him not only did I want to gear the seminar to those who have a chronic pain condition, but I also felt it very important for them to bring their family and friends too.  I had already realized myself, that it's almost impossible to make others really understand what it's like for us to live just one day with the pain we have.  Any help I can give to a fellow Fibromite to help their family understand, is well worth the effort. This seminar was to provide not only tips, tricks, common treatment plans, ways to help you communicate with your friends and family about what it's really like to have a chronic pain or a chronic pain and fatigue illness, but it also was to speak directly to those non-sufferers that's sitting in the audience too.  To give them a glance at what it's really like for "us".  That their loved one wasn't just lazy, ..wasn't just crazy.  I told my husband that I'd give anything to be able to have every doctor and every nurse in the entire U.S. sitting in that audience too, because so many of them treat those of us with a debilitating illness like we're liars.  Pain pill seekers.  Dirt. Trash. Like we're so beneath them.  Sound harsh?  -It's not as harsh as when someone you're going to in the medical profession,  asking for help ...begging  for help in some cases, makes you feel this way.  Long story short?  He looked at me, rolled his eyes and made a snorting sound, then turned and walked away from me to go watch tv.  I can't tell you how much that stung.  Another time that just drilled it in even deeper to build the seminar was when he said something to the effect of "when your meds start working".  I sat there and looked at him.  I said "You DO know that the medicine isn't a cure right? There isn't any cure for what I have." -Now keep in mind that he had been with me to every single doctor appointment that I had been to.  His response?  He said "There isn't a cure?  I thought if you took the medicine that you'd be fine."  I couldn't believe it.  It really stung to know he'd been to every appointment with me and obviously hadn't cared enough to even listen to what two different doctors had told me.

Two months later, he walked out walked out on me and wanted a divorce, completely out of the blue.  The number one reason he cited for leaving me was "I'm too stressed out about your health.  I just can't take it anymore".  I'll bet you all can imagine how much that hurt me.  I'd been with him for 20 years.  Back in my 20's and early 30's I'd worked my butt off.  I worked 3 part time jobs.  Another time I worked one full time job and 2 part time jobs ...all while carrying 18-20 hours in nursing school and raising four children.  Unfortunately though, I hadn't worked in years due to my health.  My husband was my only income.  When he left, so did my income. I knew I had to start working on putting the chronic pain seminar together way quicker (In fact, at least a year quicker) then I'd originally planned.  There is just no way that I can work a "typical" job with my health the way it is.  I started diving head first into education and advocacy.  Hence, "Living With Chronic Pain - A Patient's View" was born.  Not without a lot of nudging and encouragement from the wonderful people that's in my life though. I feel so lucky, ...so honored, to have "met" all of the wonderful Fibromites that I've encountered along my journey with facebook and The Fibro Frog.  I've decided, that as bad as 2013 was for me, that it also gave me a lot of blessings.  Therefore, I can't just push it behind me and forget about it. In the last few days, I'd even feel guilty when I'd catch myself thinking about how "awful" 2012 was and how I couldn't wait to move on to 2013.  

Now that 2013 is here, I'm jumping in feet first.  I'm embracing 2013 as the year of HOPE.  Hope that there will be more research.  Hope that a cure may be found.  Hope that a treatment plan that actually works universally will come to light.  Hope that I can educate and advocate to help others. Hope that I'll be able to launch a new career while helping others.  Hope to make even more new fibro friends ...or friends who suffer from any chronic pain and/or fatigue condition.  I hope to make a difference not only in my life in 2013, but also into the lives of others.  I'll be posting one motivational quote a day, to help keep me on track and  show me that there's hope.  There is ALWAYS hope in every situation in life.  Without hope, what do we have? We might as well lay down, curl up, and wait for death to overcome us.

I can't tell you the amount of people who has told me that they'd love to attend one of my seminars.  I've had people tell me that if I booked anywhere within their state, that they'd drive to be present.  Funding has been a big problem for me, to go and present the seminar.  After a lot of thinking and consideration, I've decided to turn "Living With Chronic Pain - A Patient's View" into a Webinar.  Solves the problems of needing a lot of cash for advertising, travel expenses, and conference room rental, and the amount of people I could reach this way is limitless.  Anyone who wants to attend will be able to do so, right from the comfort of their home. For the first few webinar's that I conduct, I'm only going to take five people per session.  The webinar will last approximately 2 hrs, give or take depending on how many questions we get.  In such a small group, I'm not anticipating so many questions that we'd go over a 2hr time slot, but you never know I guess lol.  

Saturday January 12th is the date for the first webinar.  I'm going to run three sessions that day.  I'll have one  from 3-5pm EST, one from 7-9pm EST, and the last one will be 11pm-1am EST.  I'm also offering two session on Sunday January 13th.  The time slots for those are: 3-5pm and 7-9pm, both time slots are EST.  

I'm also offering a fun special to kick the webinar off with!  On the registration form I have a spot asking who referred you.  For every person that signs up, pays for their spot, and lists your name in the referral spot of the sign up form, you'll get one entry into a drawing to get your seminar FREE. If you've already paid me for your spot, then I will reimburse you for your fee.  I'll take referrals up to noon EST on Saturday January 12th.  So what are you waiting for?  Sign up and share the link with your family and friends!  To sign up and to get the URL to share, just click HERE!

Just remember, 2013 is the year of HOPE.  For all of us.  You never know, this could be the  year that scientists get a break and figure out a cure for our pain, insomnia, and memory problems.  I'm wishing all of you a happy, healthy, hopeful new year.  Sending a gently butterfly hug out to all of you!

Tuesday, December 18, 2012

A Dilemma - Wrestled With Should I or Shouldn't I

Someone contacted me and asked me to post the link to my donation page for the seminar (which I kindly pointed out was located on the right hand side of this blog), and said that they know the struggles I've gone through this year, both mentally and physically.  They said that they know it's been very hard for me monetarily with my husband leaving and my health not allowing me to work, because they're a facebook friend of mine and have seen my status updates. They asked me to post my PayPal email address too.  Well, last Friday I'd posted on my personal facebook page that I hadn't received a child support payment in two weeks and the 2 previous payments I'd received wasn't even for as much as it's ordered to be.  I said I could about cry because I was over $400 short on bills for the month and still had Christmas shopping to do. I had a lady on there tell me I should just be grateful to get anything.  I explained to her that in the past this wouldn't have been a problem because I could, and did, work to support myself and my family.  I told her that it's just so very hard now, because I'm sick and unable to work.  She responded by telling me if I'm unable to work, that I shouldn't have any kids and told me "for lack of a better word, you're USELESS".  Yep, she sure did and she even used the caps as I've quoted.  I can't tell you how much this stung.  My oldest daughter, 23 and a grad student, responded and told her that I've always found a way to support my children and that I've always been a good mother.  The request for my info came in on Saturday and I was still pretty raw with hurt feelings from Friday, so I've just sat on it.  When I emailed the person back and thanked them for the offer, I told her it would make me feel bad to do what she'd asked me to do because I was afraid that others might think and feel about me the same way the facebook lady felt.  She responded back and told me that she herself wouldn't be able to do very much but that she really wanted to do what she could and that I should put it out there because even if it's only a few dollars, that a lot of people like to help others that are down on their luck at this time of year.  She told me that right now keeping up this blog is my "job" and that it's not wrong to accept donations for the "job" I do.  I still feel really funny about this, but I've decided that I'll do it. Please, no one think you "must" contribute to either (the seminar donation page  for the seminar overhead or my paypal for my personal use).  Getting these words out is worse then having teeth pulled to me.  I extremely dislike asking for help.  It was explained to me though, that if I don't post it that I could be taking someones good deed for God, away from them (that is the way my mother explained it to me when I told her about this situation).  Sooo, if you want to donate to the seminar fund, there's a GoFundMe button on the right hand side of the page.  Just click it and it'll take you where you need to go.  If you want to contribute to my PayPal for my own personal bill/Christmas usage, my PayPal address is: jaammull(at)aol(dot)com.  I'm completely embarrassed to do this, yet I'm humbled that someone thinks enough of me to want me to post it.  I'm conflicted.