Finding Relief: How A Life Coach Can Help With Chronic Pain

 How Can A Life Coach Help With Chronic Pain?

 

Today, I'm going to talk to you a little bit about why I became a Certified Meditation Facilitator & Coach, NLP Practioner, Emotional Intelligence Coach, Life Purpose Coach, Business Coach, Coming Out Specialist, Goal Setting Coach, etc etc to lead to an overall Master Life Coach Certification.  Those who are new here, may not realize that I myself, have struggled with many, many chronic pain conditions.  Like a lot of you, I desperately kept searching, and reading, and analyzing searching for answers.  Well, after working with a world-renouned Rheumatologist at The Cleveland Clinic ….there are no answers.  No answers for a cure.  No answers for a concrete universal treatment plan, that works for everyone.  But what I DID learn, is that if I found the right mixture of techniques to use, I could retrain my brain, and be able to actually live again.  Do I still deal with chronic pain and fatigue daily?  YES.  I do.  But, I now use the techniques I learned becoming a certified master life coach, and I can function again.

 

Anybody can learn the techniques that I learned.  I did it without the help of a life coach.  When I saw that it wasn't just some "touted BS" I honestly was in disbelief!  I knew, that  I had to come up with the money to take as many classes as I could, so that I could help others too.  My blog, at it's core, is still what I intended it to be when I first started it.  A blog trying to educate the public about what it's really like to live with Fibromyalgia, and other chronic pain and fatigue illnesses, so that hopefully that would lead to more research money, to try to find a cure for fibromyalgia, or at the very least, a solid concrete universal treatment plan that helps everyone, not just some as current medications do.  While studying and learning, it would've been so much easier if I had a life coach myself.  Someone who truly understands what it's like to live under debilitating pain and fatigue.  Someone who could hold me accountable.  Someone to help me rewire this brain of mine.  Someone who could help me explain to my family and friends how I really feel and what it's really like to live in this broken, sick, body of mine (and yours!).  Someone that could teach me techniques to help my anxiety levels.  -Because every time I make a promise that I'll go somewhere or do something, I immediately would get anxious. I'd worry non-stop if I'd be able to have the energy to literally force myself to show at the event.  Then someone to help me with the depression I would feel, if I just couldn't  force myself to do whatever it was that I was supposed to do.  I also have taken classes, and researched to put together a seminar that is aimed towards corporations.  It's an EQ (Emotional Intelligence) course that will help company leads learn how to deal with their employees, and specifically those that suffer from chronic pain and fatigue illnesses.  Research has shown that companies who have their top leads trained in EQ, significantly lower their turn over rate!  Plus, it helps those of us who DO live with these conditions.  I'm trying, on every avenue possible, to improve our quality of life.  We deserve to have a life, just as anyone else does.  We just may have to go about it in a different way.

I'm blessed, that over the course of the past 12 years, I've been able to help so many people!! Hundreds upon hundreds of people would seek me out, and DM me thanking me.  It truly humbled me, as I started off 12 years ago, just wanting a little corner in the big ole cyberspace world to vent!  Every blog I'd find, would just be a "rah-rah we've got this, we're warriors" type of cheerleading blog.  I didn't want that!  It literally left  me sitting at my desk in tears when I first was diagnosed and found all of those other blogs.  With tears streaming down my face I said "Why?  No, this is all wrong.  We don't have this.  We don't have a cure.  We don't have a universal treatment plan.  It's HARD to get out of bed and dressed each day. It's hard to force myself to shower, let alone attend a big event.  This is BS!  If people think it's so easy they aren't going to be as inclined to donate for research.  People need to know the truth about what it's like to live with chronic illnesses".  Therefore, The Fibro Frog was born.  Even though I wanted to educate and advocate, I honestly didn't think anyone would ever even see or find my blog.  When I hit 50 followers I couldn't believe it.  I remember the day I woke up and saw I had 100 followers.  I literally was calling my parents, my kids, everyone I knew I was so excited lol.  Fast forward to today, and the blogs FB page is now just under 16,000 followers since FB went through and deleted inactive profiles.  That's ok though, we don't want inactive profiles anyway.  We want people who are active and excited to meet others that suffer with what they do.  We want people who are just as passionate about educating and advocating for a cure or solid treatment plan, as I am.  We want people who are willing to talk to others AND listen to others, to allow them to vent.  In other words, we want one big supportive family of chronic illness people! 

TYPO I didn't notice until RIGHT NOW lol.  DM me on FB at: facebook.com/Amymullholand70  I forgot the 0 I guess lol.

 

I'm going to tell you now, some of what a life coach can do for you, if you have a chronic illness.

 

A life coach can be a valuable support system for individuals dealing with chronic pain. While life coaches are not medical professionals and cannot provide medical advice or treatment, they can offer guidance and assistance in managing the emotional and practical aspects of living with chronic pain. Here are some ways in which a life coach can help:

 

1. Emotional support: Chronic pain can take a toll on a person's emotional well-being. A life coach can provide a safe space for individuals to express their feelings, frustrations, and fears related to their pain. They can offer empathy, active listening, and emotional support to help clients navigate the emotional challenges associated with chronic pain.

2. Goal setting and motivation: Chronic pain can make setting and achieving goals challenging. A life coach can work with individuals to set realistic and achievable goals related to their overall well-being, such as improving daily functioning, managing stress, maintaining relationships, or pursuing hobbies and interests. The coach can provide motivation, accountability, and guidance to help clients take consistent steps toward their goals.

 3. Developing coping strategies: Chronic pain often requires individuals to develop effective coping strategies. A life coach can help clients explore and identify coping mechanisms that work for them. They can provide tools and techniques to manage pain, such as relaxation exercises, breathing techniques, mindfulness practices, and stress reduction strategies. In my packages, I also offer the use of guided meditation, NLP techniques such as anchoring, CBT (cognitive behavioral therapy) techniques, journaling, positive affirmations, vision boards, manifestation, and more.

4. Lifestyle adjustments: Chronic pain may require adjustments to daily routines, habits, and lifestyle choices. A life coach can assist individuals in identifying areas where modifications can be made to accommodate their pain. This may include developing strategies for pacing activities, prioritizing self-care, incorporating stress management techniques, and making necessary adaptations to work or social environments.

5. Communication and advocacy: Communicating about chronic pain can be challenging, especially when it comes to family, friends, employers, or healthcare providers. A life coach can help clients improve their communication skills and provide guidance on how to effectively express their needs, boundaries, and limitations. They can also assist individuals in becoming effective self-advocates within the healthcare system, helping them navigate medical appointments, ask relevant questions, and seek appropriate support and resources.

6. Holistic well-being: A life coach can take a holistic approach to well-being, considering various aspects of a person's life affected by chronic pain. They can explore areas such as nutrition, sleep, exercise, self-care, and social connections, providing guidance on how to optimize these areas to improve overall well-being.

Remember, while a life coach can provide valuable support, they are not a substitute for medical professionals. It's important to work with a multidisciplinary team that may include doctors, pain specialists, therapists, and other healthcare providers to address chronic pain's medical and physical aspects. The old saying "It takes a village" isn't just true when it comes to raising children. When we're trapped in these bodies of ours, I cannot stress enough how important a multidisciplinary team is! In the beginning, it seems like a lot of work. -And it really IS a lot of work. But it is SO worth it in the end when you're able to start truly LIVING again!!

 

Anyone Can Say They're A Life Coach, How Do You Make Sure They Really Have Had Training?

 

Unfortunately, there are NOT strict regulations on being a life coach.  Anyone, yes anyone, can "say" they're a life coach.  No law will stop them!  I could've just said …..Hmm, "life coaching" is what I've basically been doing for all of these years anyway, so I'll just say I'm now a life coach and start taking people's money.  I didn't want that!  If I was going to "say" I was a life coach, I was really going to "BE" a life coach.  I've sunk every penny I could get, into certification classes.  Since there aren't any laws in the U.S. governing life coaches though, here's some tips on finding one that really IS a life coach.

 

 

Validating the training and qualifications of a life coach is essential to ensure you're working with someone who has the necessary skills and expertise.

 

1. Research their background: Start by researching the life coach's background and qualifications. Look for their website, online profiles, or any other information available. They may provide details about their training, certifications, education, and professional affiliations.

2. Ask for credentials: Reach out to the life coach directly and ask about their credentials. Inquire about their specific training programs, certifications, or any relevant qualifications they hold. Legitimate life coaches are typically open to discussing their backgrounds and will provide you with the necessary information.

3. Request references: Ask the life coach for references from previous clients or colleagues who can vouch for their training and expertise. Reach out to these references and ask about their experience working with the coach, the effectiveness of the coaching, and any other relevant details.

 4. Review testimonials and reviews: Look for testimonials or reviews from previous clients. These can often be found on the life coach's website, social media profiles, or other online platforms. While testimonials should be taken with a grain of salt, they can provide some insight into the coach's credibility and effectiveness.

 5. Conduct an interview: If you're still uncertain about a life coach's training, qualifications, or approach, request an initial consultation or interview. This will allow you to ask questions about their background, training, methodology, and experience directly. Pay attention to their responses and assess whether they instill confidence and trust in their abilities.

Remember that while these steps can help you validate a life coach's training, it's also essential to trust your instincts and evaluate how comfortable you feel working with them. A good fit between you and the life coach is crucial for a successful coaching relationship.  The compliment I hear the most is, "Amy, you're just so easy to talk to. I don't know what it is about you, but you just draw people to you".   Make sure you feel THAT way, about any coach you choose to work with.

 

I've also always had a lot of friends from within the LGBTQIA+ community, and even have a man that I consider a son, that's gay.  I've had SO MANY people from within the LGBTQIA+ community that has sought me out, just needing someone to hold their hand and give them some techniques to use, when they come out.  I've had men aged 30-50 find me on FB, that were struggling with gender identity and/or gender dysphoria.  Throughout the life of the blog, I've mentioned how high the suicide rate is within the chronic pain community ….it's just as high, if not higher in the LGBTQIA+ community and this absolutely breaks my heart.  After I was on the tv show Dragnificent, on TLC, I had more and more DM's from people within the LGBTQIA+ community.  As a life coach, I'm capable and equipped to help anyone.  My passion though, will always lie within the chronic illness and LGBTQIA+ communities. 

 

IF anyone feels suicidal though, please don't seek ME out.  Please call 911, a suicide hotline, or go to your nearest emergency room for immediate help.  I say this, because unfortunately twice now someone has contacted me out of the blue only for them to message me again a few weeks later and tell me "Thank you, you literally saved my life.  When I first contacted you I was thinking about just killing myself".  That my friends, scared the living crap out of me lol.  I'm NOT a psychologist or psychiatrist, or someone trained specifically to help those that are in crisis mode contemplating suicide.  But if that IS YOU, PLEASE seek immediate help from someone trained in that specific area. 

As always my friends, Never Give Up HOPE! -Without HOPE, you don't have anything! I TRULY live my life by this motto!

I'm Proud To Be A Spoonie

I'm Proud To Be A Spoonie.

I'm Strong, Independent, & 

Fearless.  I Wake Up

& Put One Foot InFront Of The Other.

I Stare Pain &

Fatigue In The Eye.

I'm A Warrior.  I

Fight Every Day

Because That's

The Only Choice I 

Have.  This Isn't The 

Life I Asked For, But

I Face It With Grace.  I

Never Give Up HOPE

Because I Am A Spoonie.

This shirt is available in a women's t-shirt, a men's t-shirt, or a unisex tank top with multiple color choices available!  The wording is printed on the back of the shirt and front is plain.  Proudly let the world know that you're a Spoonie!  Place your order, by clicking HERE!!

Create Awareness and Show Your Support

For the next two weeks you can order a t-shirt, long sleeved tee, or a hoodie.  Multiple colors to choose from!  Help create awareness everywhere you go when wearing one of these.  Without more education about our illness, and more advocating for further research, a cure will never be found.  How cool would it be if someone stopped you when wearing one of these, and asked you "Exactly what IS Fibromyalgia?".   ORDER YOURS BY CLICKING HERE

Put Me Out Of My Misery

OMGosh, felt it definitely is.  This morning it awoke me, feeling like a chain-saw was gouging into my leg.  The weight of the blanket touching it was excruciating.  My leg was so swollen, that blood under the surface of the skin, was ready to break through where the top of my sock was lying.  It's a dark crimson color.  As much as I like that color, it looks pretty ugly in a line on my leg. To lightly brush over it with my hand, felt like a million teeny tiny needles pricking me.  

My eyes feel like thousand pound sandbags are attached to them, trying to pull them closed.  I'm so stinking tired that I can't stand it.  I can't go to sleep though, because my 3yr old granddaughter came to stay with me Thursday evening, and she'll be here until Wednesday.  I thought about calling my son and telling him he has to come pick her up now, but I don't want to give in to Fibro.  My granddaughter is my everything and I haven't been able to see her for about a month.  She makes me happy and gives me a reason to go on.  I'm not letting physical illness steal this joy from me.  It takes everything else.  Besides, I don't want to live my life in bed.  That isn't a life.  It's just existing.

My doctor won't pin the CRPS label in my file.  She said it probably is, but all she knows for sure, is that when I had cellulitis about 1.5yrs ago, the infection caused permanent damage to the nerves and muscles in my leg.  It's the classic symptoms of CRPS, down to the pink, mottled, shiny skin.  Hair doesn't even grow in that area anymore ...not that I'm complaining about that though haha!  

The type of pain that awoke me today was a screaming, angry, more than demanding pain.  It's this type of pain, that allows my HOPE to slip.  This type of pain, makes me wobble on the line of depression.  It makes me think thoughts such as "at least when I die, I'll be out of this misery".  

Once my thought process goes down that line, I start to get angry.  Angry that with all of the advances in modern medicine, there isn't any more known about these types of conditions.  Angry that a medicine hasn't been developed that will treat fibromyalgia, CRPS, CFS/ME, Lupus, RA, and the list goes on and on.  Angry that there isn't a cure.  Angry that not only me, but so many others have to live exist like this for the rest of their long lives.

Every time this happens, it fuels my fire for education and advocacy.  I'm still of the firm belief that if the unaffected world is educated enough on what we go through, then the demand will be high enough for further research.  That private donations for research will come through.  Maybe I'm just living in denial, I don't know.  What I do know, is days like this is what will keep me advocating until the day I die.

On a positive note, I'll leave you with a photo of my 3yr old granddaughter sleeping peacefully the other night ....thank God NOT in pain.

Really Society? I'm Outraged

I just saw a story in my facebook feed from one of my local tv stations.  The article was about a man from Ohio that started a campaign on a crowd funding site as a joke, to raise $10 .....yes, 10 measly dollars, to buy the ingredients to make potato salad.  He ended up raising over $55,000!!  Are you kidding me?!  Over $55,000, because he wanted to make a batch of potato salad.

28 months ago, I started a campaign on a crowd funding site (GoFundMe) to try and raise $5,000 to print up materials, pay for advertising, pay for location rental, and for travel expenses, to get my seminar on living with chronic pain up and running.  Guess how much I've raised in two years and four months time?  $90.  No, not $90,000.  Not even $900.  Just ....$90.00.

According to article when funds started rolling in, he promised he'd have a big party.  So, now he's going to hold PotatoStock 2014 in downtown Columbus, OH.  But, how much of that $55,00 is even being used towards it because the article goes on to say that the Idaho Potato Commission and corporate sponsors have donated supplies for him and volunteers to whip up 300 pounds of potato salad for the event.  The event is going to feature bands, food trucks, and beer vendors.  Usually for something like this the bands donate their time, and the food trucks and beer vendors pay for a spot to set up.  To give a little credit, the article says the man used some of the money raised to aid charities that fight hunger and homelessness.  Some of the money?  How much of the money?

Whether $1 or $10,000 was used to aid some charities isn't the point I'm stumbling on though.  It's the messed up way that people, the people donating to the crowd funding campaign in the first place, think.  Essentially, this guy was asking for $10 to buy some potatoes, mayo, and onions.  Once donations started coming in he promised a party.  People went wild and donated over $55,000 so a party could be held.  I ask for $5,000 to try and help people live a better quality of life, to educate those that don't know what it's really like to live with a chronic pain illness so that hopefully we'll get enough exposure out there to aid in further research to find a cure ...or hell, I'd even take a treatment plan that actually works, and works for everybody that has Fibromyalgia, and society can donate $90 in almost 2.5 years.  What's more important to society?  Having a party, or helping to improve the quality of a persons life?  Obviously, the party wins.

Call me jealous, or spiteful, or whatever you may but I'm seriously outraged and extremely upset over this.  I've been overly emotional the past few days due to lack of sleep, pain, and stress but I honestly am holding back tears right now.  To add insult to injury, for the past two years I've messaged all of my local news stations literally begging them to mention even one sentence on the air  ...OR even just on their facebook or Twitter page, that it's National Fibromyalgia Awareness day.  Seriously, I would've been happy had they just written "Today is National Fibromyalgia Awareness Day" on one of their social media sites, but not only didn't that happen, but they didn't even respond to my message to say "sorry, no can do".  As soon as someone is going to hold a party with bands and beer though, it's a complete article!

There have been times that I'd like to make a batch of potato salad too, but haven't had the money.  There have been times that I'd like to have a dozen eggs, a loaf of bread, and a gallon of milk but couldn't even buy one of those items let alone all of them.  Do you know why?  Because Fibromyalgia and all of the co-morbidities that I have along with it, keep me from being able to work a real job.  I don't have a husband and his income to help out because a few months after I was diagnosed as having all of these life long chronic illnesses, he bailed.  I can't meet anyone new, because my health keeps me from being able to get out of the house on a regular basis.  Do I set up a page and ask for donations when I'm hungry or I'm struggling to pay my bills?  No.  I do without.  I've been raised not to ask for "handouts", and I really struggled with setting up the page for donations to start up the seminars.  In the end, I did so though because it would be helping to improve the quality of life of those afflicted with a chronic pain and fatigue illness, and it would help me to support myself.  It's something that I would only have to do for a couple hours a day, once or twice a month.  That I could handle.  I can not handle a *real* job though, not even part-time.  It's just unrealistic for my health issues.

Maybe society as a whole isn't messed up with their thinking.  Maybe I'm the one who's messed up.  I've been accused of having too big of a heart before.  Of caring too much about people.  I don't know.  All I know, is that I'm really, really sad today. Sometimes, I feel as if I'm fighting a losing battle with trying to advocate for all of us that suffer and have a normal life ripped from us.  In all honesty, I probably am. Regardless though, I'll never give up.

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!

Compassion

The definition of compassion, according to the Merriam-Webster Online Dictionary (check it out HERE) is as follows: "sympathetic consciousness of others' distress together with a desire to alleviate it".

Why?  Why ...don't most people care about the level of pain that people with a chronic pain & fatigue illness feel?  Seriously.  People are so busy in their own lives, that they don't stop to really think about us.  If they do, they can't wrap their minds around it.  They think that we're just exaggerating.  Or that we're just lazy.  

Today, I had to have my daughter apply a Lidoderm patch on my lower back.  She also had to apply one to my middle back.  At the same time, I took 800mg of Ibuprofen along with 50mg of Tramadol, and 10mg's of Flexeril.  I still hurt so badly, that I had to go lay down in bed for awhile.  It felt as if I hadn't taken anything at all for the pain.  This is how my life is spent.  Hurting. Trying to alleviate the pain.  Being stuck either in my chair or in my bed.  Sometimes being stuck in a bathtub of hot water for an hour ...adding more straight hot water as it cools off. My entire life is spent like this.  Trying to live, by working around the pain.  Trying to plan activities of daily living, around the pain.  Trying to have some sort of quality of life.  Trying to fight back the depression that one feels, when they have to live their lives like this.  I have "live" in bold face, because if you really think about it, am I honestly "living" when this is my life?  The depression that one feels, knowing that they will have to live every day of the rest of their lives with this kind of pain.  In my case, I could be facing another 30-40 years, of constant pain.  To stop and think about having to feel like this for 30-40 more years seems surreal to me.  It seems undoable to me, quite frankly.

I desperately try to advocate for those with a chronic pain illness.  Not just those with Fibromyalgia like I have, or with RA like two out of three of my doctors believe I have, but for anyone who suffers from any type of chronic pain.  Pain is pain, no matter what the diagnosis is.  I feel compassion for anyone who has to live like I do.  I've always been brutally honest on this blog, and I intend to always be honest even though that isn't always painting a pretty picture.  So in all honesty, I fight so hard for awareness, advocacy, and research because I'm hoping that a breakthrough in research happens in my lifetime.  I'm hoping that by some miracle a cure may be found so I don't have to feel the pain anymore.  I'm hoping that I may regain some sort of quality of life before I die.  

When I've been stuck in the vicious cycle of a flare for awhile, it always runs me down.  It makes me sad, grouchy, depressed, on edge, touchy.  Most of you know that after my husband left me, I sat down and put together a seminar on living with chronic pain.  I've never been one to ask for help or charity.  Heck, when someone even brings me a gift for my birthday or Christmas I'm not sure how to act because even if it's something I absolutely love and I'm happy to get, I'm not used to getting things for myself.  Therefore it makes me feel awkward to accept gifts.  I eventually though, swallowed my pride and made a Go Fund Me account.  As embarrassing as it was for me, I shared the site and asked for donations.  Donations so that I could pay for conference rooms, advertising, and travel expenses to present my seminar.  Not only does the seminar give the person afflicted with a chronic pain illness numerous references, tips, and advice for coping with their pain, but it also gives them resources to share with their family and friends to help them understand what it's like to live every day like this.  It also educates those without a chronic pain illness, what it's like to be "us".  To be a chronic pain sufferer.  The seminar also opens people's eyes to the dismal amount of research that we have in this area, and why it's so important to advocate for more research.  Why we need a cure.

This is my "confused" frog face.  Of course, having fibro fog most of the time lends me to look confused a lot of the time, but tonight I'm putting it on because I just can't understand the lack of compassion.  The lack of compassion there is for those of us who are stuck in a life of hell on earth.  After spending 1/2 of my day in bed due to pain, and the other 1/2 sitting here in pain, I logged onto my email a bit ago.  I had my weekly newsletter from Go Fund Me.  Each week, they send one out telling of the great success stories they've had during the week, with donations.  I usually don't open them, but tonight I did.  I opened the email and the top story headline on it was this: 

The Clint Tarver Campaign Clint Tarver made headlines this week. After the Lansing, MI hot dog vendor had his equipment damage by rowdy protesters, America reacted with a ton of support. $33,461 raised by 1436 people in 2 days $33,461 raised in TWO days, by 1,436 people. Wow.  Tears sprung to my eyes.  That is one hell of a lot of money in only a two day time period.  Now, I am sorry that this hot dog vendor had his equipment damaged.  I'm also happy for him that's he's going to be able to replace his equipment because it was his job.  On the other hand though, I've raised $85 in the past six months by a total of four donors.  Now maybe I'm biased, but I feel that this proved to me how little compassion the general public feels for those of us who suffer with chronic pain & fatigue illnesses.  Someone may say "Yeah, but that was that guys job.  He probably has a family to support".  You know what?"  Presenting this chronic pain seminar is my job and I have a family to support as well.  I have to do something to try and support my daughter and myself.  The level of pain, fatigue, and insomnia that I suffer makes it near impossible for me to work a "real" job.  Believe me, I wish more then anything that I could just go get a job in a factory.  I'd enjoy the face to face interaction with other adults, and I need the money.  I really need the money.  The reality of it is though, it just isn't possible for me.  About 3 years ago I got a factory job through a temp service and I made it through 1/2 of the shift.  After 1/2 of the shift I limped to my car crying from the pain.  After sitting in the car for the 20 minute drive home I could hardly pry myself out of it to walk into my house.  I was so stiff and hurt so bad.  Yet this hot dog vendor obviously can work any job so even though he wanted to be a hot dog vendor, he could've went out and found any other type of job to support himself while building the money up to replace his equipment.  You know that my donation page won't even show up in the site's search results?  You have to have had at least $100 in donations before they'll add you into their search results for the different catagories.  I just don't understand how 1,436 people can be compassionate enough to donate over $33,000 in TWO days to replace hot dog equipment, but can't be passionate enough to give a crap about the pain we're going to be stuck in, until the day we die.  As I have previously blogged, the number one cause of death for those with fibromyalgia is suicide.  As much as I'd like to act shocked and offended over this statistic, I can't.  I can so totally understand the frame of mind these people are in when they commit suicide.  The depression.  The physical pain and mental exhaustion and depression.  Desperation. I "get" it.  I know why they want out.  A person deals with as much as they can, for as long as they can. This is why it's so important to educate as many people in the U.S. as we can, about what our lives are really like.  This is why I feel the desperation to conduct my seminar.  If we want any type of cure in our lifetime, then we need to advocate for a cure.   Days like today and tonight, I feel like just crumbling and forgetting about advocating.  Forget about the blog, and the facebook page.  I feel like I'm putting all of what little energy I have, into fighting an uphill battle and that I'll never reach the top of that mountain.  Every time though, I do keep going.  I always will keep going because if I don't, then who will?  Fighting for education and advocacy is the only thing that spurs me onward and keeps me going.  It's the only thing that gives me hope.  Hope that one day people will feel compassion for "us".  Hope that a cure will be found.  Hope, that someday soon I'll actually have a good quality of life again.  Compassion.  Such a simple word, but also such an important word.

EVERY Day Should Be An Awareness Day

As I sit here with a wet, gooey feeling on my mid-back from my pain patch, I started thinking about my personal facebook profile picture.  It's one of the "May 12 Fibromyalgia Awareness" photos that go around. Maybe I'm just grumpy tonight from being so tired (I couldn't fall asleep Friday night until after 7am Saturday morning).  Maybe it's because my arms, neck, and shoulders are aching just with minor typing tonight.  Probably  Possibly all of the above, but regardless it struck a nerve gave me pause for thought.  We're supposed to create enough awareness yeah, because that's a real possibility to do any good or bring about changes by making people "aware" one day out of the year?

I'm sorry, but it kind of makes me want to scream and cry, and kick, and throw myself on the ground in true temper tantrum fashion when I sit and really think about that tonight.  Before starting this post, even though I knew the answer, I still went to page after page googling "what is" ....Fibromyalgia, Lupus, RA, Ankylosing Spondylitis, Osteo Arthritis, CFS/ME, etc.  Why would I do this besides being completely crazy?  Just to look at what I already know.  "Although there is no cure at this time ....."

No cure "at this time".  Does that mean that there will be a cure in the future?  Will it be during my lifetime?  Well, I'll tell you my honest opinion.  Although I'm hopeful, realistically I really don't think there will be a cure in my lifetime.  I'm praying that a cure will be found during my daughter's lifetime.  The reason I'm not hopeful, is because there isn't enough advocacy.  There isn't enough awareness.  If you've been around my blog for awhile, you know that one of my key phrases is "without education there won't be change".

What do I mean by change?  You could say that I mean it in the same way as awareness.  My entire mission statement for The Fibro Frog could be summed up by the words on one of the awareness photos I made up.  You'll see it below:

I just think it's so silly to expect people, as in a lot of people, to become aware of how painful, debilitating, and real these conditions are by having separate one day awareness dates throughout the year.  According to the U.S. Census Bureau, as of July 2011, there's 311, 591,917 people in the United States.  Out of over 3 hundred MILLION people approximately 6 million people have Fibromyalgia, and all of the chronic pain illnesses together tally around 116 million people, that still leaves 195,591,917 people who doesn't have a clue what it really feels like to live with an illness that causes chronic pain.  You'll find the census bureau information that I used for this post, by clicking HERE.  That still leaves one heck of a lot of people that doesn't have any clue in the world how miserable our lives truly are have any idea how hard our day to day lives really are.

195,591,917 people that by no fault of their own, just can't grasp the type of pain we live with.  195,591,917 people that are still left to believe that the pain is "all in our heads", or that "Gee, my back, feet, and legs hurt after work so I do know what these people are going through and it isn't that bad.  They're obviously attention seekers".  We can't be mad at people for thinking these things.  As angry as I start to feel every time I read or hear of someone saying that Fibromyalgia isn't real, I have to calm myself down because it isn't there fault.  They truly have no idea of the scope of pain and fatigue that we endure every single day of our lives.  That's my fault.  Our fault.  

Some of you are probably starting to get completely a little miffed at me right now for putting the blame on us, aren't you.  Seriously though, unless we can make these people understand, they will never know what a day in our lives is truly like.  How do we do that?  By educating them.  By talking to them. By showing them proof from studies that these illnesses are real.  By giving them analogies of things that they can relate to.  For instance, using the analogy of when they've had the flu.  That really is one of the truest analogies out there.  

How can you start educating people?  Simply post the truth about how you feel on your face book page.  By writing and sending a bulk email with info, examples, study and research links in it.  By spreading the message about my "Living With Chronic Pain - A Patient's View" seminar.  By talking to your community leaders, pastors, lawmakers, doctors, clinics, college campuses about booking my seminar.  If people doesn't understand what it's truly like to live like this, then it's up to us to help them to understand.  If we ever hope to have a cure found (for whatever chronic pain/fatigue illness you may have), it's going to take pressure from multiple people to demand further research.  I go over the statistics of how much government money goes towards research for us, compared to the amount of government money that goes towards research other illnesses.  Now, I'm not being crass or cold hearted.  I've had people I love dearly that's passed away due to some of these other illnesses, but the distortion in the amount of research funds for these other illnesses, compared to what we get for fibromyalgia, was staggering to me.  I had someone say to me once "Well at least you won't die from what you have, like a person with cancer might".  Again, I'm not crass or cold hearted, I'm just throwing my honest opinion out there.  I'd much rather be diagnosed with some sort of heart condition, because they have treatments that can be tried ...medicine, surgeries, etc. that can possibly lead to the person being cured.  I've long and hard with this next one, and I still feel the same way; I'd rather be diagnosed with cancer.  Again, there's treatments and therapies and surgeries that can be tried an a lot of the time the person is cured.  Yes, a person goes through pain, tremendous pain, and sickness with cancer treatment. Still though, they have the hope that they'll achieve remission and be cured someday.  Did you know that in most of the auto-immune illnesses, a lot of people take some of the very same immune suppressants that is given to people with cancer?  It's true.  Yet even though they take meds and have infusions of the same meds cancer patients have, they don't have any hope that they'll be cured.  They live with the knowledge that they're going to live in perpetual pain every single day of their lives until they die.  Not only the pain, but the fatigue, the headaches, the nausea and sickness and depression that are co-morbidities of  Fibro, or Lupus, or RA, etc.  Co-morbidities such as ulcerative colitis, IBS, chrones disease, migraines, and on and on and on.  Real conditions that hurt.  Real conditions that make you sick.  Again, for me, I'd much rather have a diagnosis of something that could be fatal because not only is there hope of being cured, but regardless, I'd know one way or another that my pain would come to an end.  On days where my pain is incredibly bad and I've been stuck in a flare for days or weeks, I sit and think about it and I'd rather know I was going to die, then to know that I have somewhere around 40 more years to live in pain, sickness, and agony.  It feels as if I've been sentenced to a life of living in a slow, perpetual hell. 

The only hope I have; the only hope we have, is that we bring about awareness to enough people that understands what a crap sandwich we've been dealt in our lives.  Enough people that's willing to help us advocate and put pressure on lawmakers and congressmen to push for more funding for more research. I really hope that none of my opinions in this post have offended anyone as that wasn't my intent.  The statements and opinions that I've expressed are solely mine.  Because I feel this way, doesn't mean that someone else with the same condition as I have, feels this way too.  As my last blog post talked about though, the number one cause of death for people with fibromyalgia, is suicide.  It's just so daunting knowing that you don't even have a chance to be healthy again.  Knowing that you'll spend every day of the rest of your life sick, hurting, and depressed. I've always been honest with all of you on this blog, and I always will be. Some people may find that honesty offensive, and I realize this, but that's who I am. If I give people nothing else, I at least give them my honest thoughts and opinions.  All of this to say please, please don't just try to bring awareness about on May 12th of every year.  Advocate for awareness every day of every year.