I Need Heat!

I detest asking for any kind of help when it's for personal reasons, but I don't have a choice.  With my health conditions, going outside in the winter is hard enough on me, let alone living in a cold house, without a working furnace.

A couple weeks ago I went to bed with the furnace working fine.  The next morning when I woke up, it was chilly in the house.  I turned up the heat to take the chill off, and nothing happened.  I then realized something was wrong with the furnace.  

I have a friend that lives in another state and her husband owns a HVAC shop.  Her husband called me, and tried to walk me through some steps to see if he could figure out what the problem was.  He deducted that it wasn't something simple and said I'd have to have a technician come look at it.

After posting on a local garage sale site, a certified technician said that he'd repair it for me, just for the cost of parts.  He finally was able to come look at it this past Monday.  It turns out that I need a new inducer motor, control board, and something with my vent for the poisonious gases.  He looked up the price of the parts in front of me, and they're around $900  ...and I do believe that was before taxes.  He said a brand new furnace would run about $2000.  

To say this made me physically sick, is an understatement.  I'm disabled due to chronic neuroimmune health conditions and I live off of $721 a month.  That barely runs my household and buys food.  It's impossible for me to come up with the money on my own.

I contacted our community agencies and there's only one program that could help me out, but I don't qualify because you have to have insurance on your home.  I bought this house at sheriff sale and due to the number of years it sat empty without insurance, plus it's age, the cheapest home insurance quote I could find, was $387 a month.  No way in the world I could afford that, so the house isn't insured.  

I'm using an electric space heater, which scares me to death that it will cause a fire, and an electric blanket.  The heater is keeping it about 56 degrees in here right now, and we have colder weather that moved in today.  Next Tuesday on my birthday, November 18th, the high is only going to be in the 20's.  I live in NW Ohio, and it get's cold here!  

If I can get the money to repair the furnace, I'll do that.  If donations exceed the repair and are enough to replace my old furnace, I'll replace it.  If there's anything beyond that, I'll fix the hole in the roof in my back room, that's letting cold air pour in through it.  

Please help me spread my campaign by sharing it across your social media networks. You can click HERE to view or donate to this campaign.  Thanks so much!

A Kidney For Jay

I have a friend, that has a beautiful family.  She has a wonderful husband and two extremely adorable little boys.  Her husband, Jay, unfortunately needs a kidney transplant.  Hilary created a facebook page awhile back to try and get the word out.  

I haven't "met" one single person yet that suffers with Fibromyalgia, Lupus, Rheumatiod Arthritis, Osteo Arthritis, etc. that hasn't been a top notch stand up person.  You know how we all band together as one big family, and try to help one another as much as we can?  Well I need you all to pull Hilary and Jay into our circle and help them get the word out that they're looking for a live kidney donor.  I know that most of us aren't eligible for something like this, but you never know who on your friends list may actually consider it or be happy to do it.  We need to get the word out to every person we possibly can.

I'm asking you all to please take a minute or two to go "like" the facebook page "A Kidney For Jay".  To get to the page, just click the words above that are highlighted, or else click right HERE.  After you "like" the page, please share it.  It always makes me feel good to do something nice and helpful at the beginnng of a new year.  I feel that it's just good karma, besides the fact that it's just something we should all do anyway.  I, along with Hilary and Jay, would be very grateful for any "likes" and shares (through all of your social media sites if you would please), but besides us appreciating it, think of this; you man indirectly be a part of saving a person's life.  How humbling would that feeling be?

I'm going to share what Hiliary has said in the "about" section of the facebook page:

"At just 40 years old, my husband Jason is in renal failure and on dialysis. He is on the transplant waiting list but he average wait time os 3-5 years. His best hope at this point is to find a living donor! Can you imagine how it would feel to give the gift of LIFE? I'm not a candidate & I want my husband around a lot longer! All I can do is help spread the word about his condition. 

The actual transplant surgery is performed laproscopically, minimizing the risk, discomfort and recovery time of the donor. Most donors are out of the hospital within 2 or 3 days. The cost of the transplant surgery is covered by the insurance - the living donor does not have to cover any of the costs. If you have to travel to be the living donor, all travel expenses are Jay's responsibility.

His blood type is B+ so compatible blood type would be a B or an O (+ or- does not matter).

Yes, it is a lot to ask of someone, but the reward is beyond comprehension!"

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!

Entry Form For Christmas Giveaway Is Live!

Welcome to The Fibro Frog's 1st Annual Holiday Gift Guide and Countdown To Christmas Giveaway!  We had EIGHT Wonderful Companies Take Part In This Giveaway.  I Approached Companies That Had Products I Felt Was Beneficial For Those Who Suffer From Chronic Pain Illnesses.

Make Sure To Go To Previous Posts To Read About Each Company, And What They've Graciously Offered For This Giveaway!  A Quick Recap On The Prizes:

1. Mediflow Waterbase Pillow

2. Bed Lounge

3. Eat Smart Digital Scales

4. Maddy Moo Design Your Own Morgan Bag

5. Bag Of Hand Dipped Soap Petals

6. Fibro Awareness Bracelet

7. 26 Bird-E Towels

8. A Gift Of Cookies

ONE Winner Will Be Drawn On Christmas Day, and That Person Will Win All 8 Gifts! How Exciting Is That?!

Enter To Win Below!  Good Luck Everyone, and Thanks For Making The First Year Of The Fibro Frog Even More Successful Then I Could Have Ever Imagined.  Merry Christmas & Happy Holidays!

In The Terms & Conditions On The Bottom Of The RC, It States That This Giveaway Is For U.S. Resident's, Ages 18 and Over, Only.  I Figured I Better Put It Here Where It's More Visible Too.  -Also In The Terms & Conditions It States That The Fibro Frog, Facebook, Nor Rafflecopter Is Responsible For Prizes Being Shipped, Lost, or Damaged.  Each Item Will Be Shipped From The Company Directly To The Winner.

a Rafflecopter giveaway

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.

I'm A Real Person, With Real Illnesses And I Extend A Challenge To You

As I opened my eyes this morning, I could tell that it was going to be an "off" day.  The feeling that I was awakening after being hit by a Mack truck wouldn't shake.  Last night, everything hurt from my head down to my big toe.  You're probably asking yourself "her big TOE hurt?!".  Yep, even my big toe hurt as silly as that sounds.  

Today, my head hurts and my nose is stuffy.  Ultimately, since I get sick if I even pass someone in a grocery store that sneezes or coughs, I'm sure I'm coming down with a cold.  I feel sad and depressed today.  I just get so tired or never feeling good.  I'm sick and tired, of being sick and tired.  

Feelings of guilt keep me from posting a lot of the time when I don't feel good.  My oldest daughter who's 23 and a graduate student in both developmental and international economics at the University of Denver, gently reminds me every now and then, that I need to conduct myself as a professional.  She knows my hopes and dreams of presenting my seminar and being a speaker at conventions.  She knows that I'm passionate about activism and research to find a treatment plan or a cure.  If I want to be booked as a professional, then I need to act professional right?  Professionals don't go online and complain about their every day mundane aches and pains.

Nikki is one of the toughest people I've ever known.  I'm not just saying that because she's my daughter.  If you met her now, you'd never have a clue what she's been through to get to where she's at.  The amount of tenacity that this young lady possesses is unreal.  Coming from an extremely modest background, ok I'll be completely honest: a poor background, she got a job at 16 years old and has never been without one since.  Sometimes more then one job, all while going to school.  Both high school and college.  She's paid her own way all through college while carrying an insane amount of full-time college credits and still making all A's.  I haven't paid for so much as one single book, let alone anything else she's needed.  Not because I didn't want to, but because I haven't been able to afford to. Researching and finding the best college for what she wanted to do with her life, she switched from living at home and attending our local college of Bowling Green State University, to packing up and jumping on a plane to start a new life in Denver, CO.  She switched after her sophomore year.  She made new friends, found new jobs, and met new people.  Nikki has met some of the most influential people that we have in the U.S.  She's been to grand benefits where she's met and spoke with people such as the founder of AOL, among many others.  She doesn't complain about anything.  She knows what she needs to do, and she gets it done.  Sometimes putting in 14-16 hour days or more, without complaint.

You're probably asking yourself right about now, why I just told you all of this about my daughter.  What does it have to do with me feeling like total poo today?  Well, it has a lot to do with it.  If Nichole says that I need to conduct myself in a professional manner, then I tend to believe her.  I feel guilty complaining because for one, it isn't professional.  For two, how can I complain when she works so very hard, supports herself while attending an expensive college, and she never complains?  Sick or not, she goes to classes and completes her jobs. 

A very old friend that I think a lot of, sent me a facebook message this morning.  He simply said "I feel that sometimes you're too hard on yourself.  Give yourself a break".  You know what?  He's right.  I am too hard on myself sometimes.  Thoughts about these two sentences, have plagued me all day.  Sure, no one wants to hear someone gripe and complain constantly, but if I really feel terrible, then it's ok to admit that.  As much as I want to be a professional, I'm not at this time.  Even if I achieve my dreams and have seminars scheduled every weekend of every month it still will come down to this: A public speaker or not, I'm a human being first.  A real person.  Unfortunately, a real person who has real illnesses.  Illnesses in which there isn't a cure, and not even solid treatment plans that will help.  Illnesses that cause depression. Illnesses like some of you, deal with every day too.

If you're reading this blog entry and you don't suffer from a neuro-immune disorder, or you don't suffer from an auto-immune disorder like I do, then you're probably not going to be able to fully comprehend what it's like to be stuck in a body that's always sick or to have a mind where you'll be right in the middle of speaking, and forget what you were trying to say or even what you were thinking about.  

One of the best analogies I've read, is in a pamphlet put out by the American Rheumatology Association.  It compares Fibromyalgia to having the flu.  Think back to the last time you had the flu.  Do you remember how tired and physically drained you were?  Do you remember how sore your skin was?  How about the sore, aching muscles?  Sometimes when you'd move, you'd get sharp pains.  Your head hurt, even your hair sometimes felt like it was hurting.  Take all of that and add in joints that swell and hurt to the point that you have trouble standing up from a seated position and hurts enough that you audibly say "ow" most every time you go to rise. Although my illnesses doesn't make you run a high fever like you do with the flu, you do run frequent low-grade fevers.  Now, I seriously want you to think about everything in this paragraph.  Then, I'd like to you think about the fact that you're going to have to live every day of your life feeling like this.   Do you know what the leading cause of death among fibromyalgia patients is?  It's suicide.  Women with fibromyalgia have a ten times higher rate of suicide then the general public.  These are people who didn't have any kind of mental health problems before contracting fibromyalgia.  Women with fibromyalgia also have a higher death rate from liver disease and stroke, then women without fibromyalgia.  There hasn't been enough concentrated research though, to find out why women with fibromyalgia have a higher death rate from liver disease and stroke so the correlation to fibromyalgia hasn't been figured out yet. Just one of the many reasons more research is needed.  If you're interested in reading about the study that was conducted to bring about these statements, you can click HERE.

If you'd like to hear a speaker that suffers every day like you do, and "get's it" then contact me and we'll talk.  I'm not a doctor, nor a researcher; I don't have any fancy initials of any kind behind my name.  What I do have though, is first hand experience and knowledge about what people like me, people like us, go through on a daily basis, just to survive.  This seminar will help those who suffer, to see they aren't alone.  It gives some survival tips and lists resources.  It also gives the person suffering the ability to help those around them, to understand what it's like to be sick like this and help them understand.  For those who attend that doesn't suffer, they'll be offered the proof to help dispel untrue myths about these illnesses.  It will provide information on recent studies.  It'll help them to be aware and hopefully instill some compassion in them, for those who suffer.  It also talks about how little research there is, and how important future research is, and why it's so important. Whether a sufferer or a community member; a lawmaker or in the medical field, this seminar will help you to understand the truth of these illnesses that cause fatigue and chronic pain. 

If you think about the paragraph previously stated, giving the analogy of having the flu every day for the rest of your life, hopefully you'll understand how important this seminar is.  How important future research is, for those of us who suffer.  If you have the understanding and compassion, I'm extending a challenge to you this holiday season.  I challenge you to give up a specialty coffee or two each week, and instead donate that money to my fundraiser.  Help me to help not only myself, but all of the others that also are living their lives one day at a time to make it through.  You can make a secure donation, on my GoFundMe page.  The link to it is on the right hand sidebar of my blog, but I'll also list a link to it as well: Donation Page.