I Demand To Be Heard

My illness (all of them) may be invisible, but my voice isn't!   May is Fibromyalgia Awareness Month, along with several other neuro-immune disorders. What better month for me to start working hard to break into public speaking? This week I'm going to start contacting groups, organizations, universities, etc. to introduce myself, my mission, and to try and book a seminar. It'll never happen unless I make it happen. If you know of a church, organization, university, medical group, etc. that may be able to utilize my service, please either give me their contact information, or give them mine. My seminar will be "Living With Chronic Pain/Invisible Illness - A Patient's View".  Let's work together and try to educate as many people, med students, lawyers, politicians, researchers, etc that we can! Let's take a stand and DEMAND attention!

May 11th (1 day before the official Fibro Awareness DAY) will be only 3 months that The FibroFrog Blog and FB Fan Page have been in operation. In that short time, we've already reached a Google Page Rank of 2 (which is GREAT for this short of a time period), my Klout Score has Sky Rocketed to a 60, and we're at almost 1200 FB Fans. I've had several mentions and DM's on Twitter. Several blog posts/articles have been featured in many online newspapers, as well. I feel that's phenominal, and proves that there are MANY of us out there, and many "interested" people. I'm passionate to educate on this subject, and feel that public speaking and seminars on this, is what I'm supposed to do. I feel like this is the reason I got sick in the 1st place.  I'm asking all of YOU to be my personal agents and help me be heard!  Spread the word about our illness, about me, and about my seminar.  Let's let it be known that we demand acknowledgement, research and CURE!

...And Now I Know

So now I understand why STBX is being so mean this week...mean enough to not even pick up my meds for me.  He IS cheating on me.  Despite me outright asking him several times, and him swearing "No Amy, I'm not seeing anyone.  I have NO desire to see anyone.  I don't want sex with anyone.  If I want that I'll just come to you because we ARE married and there's nothing wrong with that, is there?  We're separated, so I have NO reason to lie to you about any of this".  I thought of a LOT wrong with that, btw...but won't go into it here.   Anyway, he's with someone.  His old highschool girlfriend has a photo of him & her with their heads together, as her facebook profile pic.  Maybe the warning sign I have above, should also come with a warning to be careful, or else facebook may lead to you being busted in an adultrious affair.  :/

I have sat here and cried.  I've sobbed.  I've wondered why "me" about a lot of things.  Why am I so sick?  Why can't I have a pretty face and a nice body?  Why am I not good enough for him?  Why am I not worthy of the truth?  Why is it that he's the one who doesn't put me or his kids first, is a liar and a jerk, yet he can run out and find someone new right away, while I'm the one sitting here alone and probably will be for the rest of my life?  Why am I the one to always feel both physical and emotional pain?  Why don't I deserve to be happy?  Why don't I deserve to have someone love me, just as strongly as the love I have to give? 

That was a lot of "why's" and a lot of "I's", wasn't it?  I guess that makes me look an sound kind of selfish right now, but I can't help it.  I'm beyond devestated.  I guess I was living in a dream state, hoping he'd come to his senses soon and tell me what a jerk he's been and that he does love me afterall.  Now I know better.  I'm mourning the loss of a life I thought I'd have, and the things I thought I'd do in my future. I'm doing it all while sitting hunched over my desk, in so much physical pain that it's impossible for me to sit straight today.  My head is killing me.  My arms and hands hurt to type.  My legs are aching.  Times like this makes me examine the "What have I done in my life to deserve this kind of emotional and physical pain?".  What have I done so bad?  I love people in my life with every ounce of me.  I'm an extremely compassionate person.  I always do anything I can to help someone if they need help with something.  Older people, children, and animals bring me great joy.  I honestly care and worry about friends and family.  If I was rich I'd donate tons of money to pediatric cancer research, as well as research for neuro-immune disorders/chronic pain/invisible illness.  I've never felt the need to be "rich".  I'm so happy with the most simple things in life.  If I could have enough money to buy plenty of food, pay my bills on time without having  to worry & stress about it, buy myself and my daughter new clothes when needed, be able to take 1 week long vacation each year, and have a little nest egg of a few thousand in the bank for emergencies like car or appliance repairs/replacements, I'd be the happiest person in the world.  Even before STBX left me April 8, when he'd tell me to buy something for myself I very rarely did.  Because MY joy was instead buying for him...or my kids...or my stepgranddaughter..or my parents.  MY joy came from being able to do little things for those I love, and seeing the joy on their faces when I did so.  I don't know, I just don't see where I'm "that" bad of a person, to deserve this crap sandwich that life has given me.  That's just how I feel too.  I feel like I walked into a restaurant expecting a full buffet, for the waiter to come hand me a crap sandwich instead.

I  need to pull myself out of this.  I've been hurt many times over the years, and I've always came out stronger for it.  I really don't see that happening this time.   This time, I don't have a clue how to become stronger for this.  I need to put on my big girl panties, stop crying, stop feeling sorry for myself, STOP LOVING HIM, figure out a way to provide for my daughter and myself.  I really truly felt that the reason I got sick was because God wanted me to spread the word.  To speak publicly for awareness and advocacy on chronic pain/invisible illness.  I truly felt that God would open the doors and make it possible for me to launch a career in that business.  I just can't tell you the overwhelming feeling I have about it, and when I'd pray about it.  I haven't hit any offers to do this yet, but I'll be totally honest in that I haven't totally read and researched how to break into it yet either.  -So maybe that's what I need to do?  All I want is to spread TRUE and CORRECT information about this to the public, to doctors (med students), to researchers, etc, and make enough money at it, to provide a comfortable income for my daughter and myself.  If anyone has any leads or suggestions at all, I'm all ears. 

I'm Just Stuck

My soon-to-be-ex husband was supposed to be here this morning around 7:30am-8am to help my son tear apart my car and remove the 1/2 shaft, take me to town to buy a new one, then help him replace it.  He never showed up and has his cell phone turned off.  I only have enough Amitriptyline to last through Monday and I only have FOUR Ultram pain pills left.  I had asked STBX yesterday if I gave him the money if he'd stop on his way home and get them for me, then bring them to me today when he came back over.  He told me no.  -I was stunned because he has to pass directly by my pharmacy on his way home.  Directly by.  It sit's on the main road he takes to go home.  All it would've taken is a right-hand turn into their driveway.  So now I don't have a working vehicle to get the meds myself since he didn't show.  I'm in a huge pain, insomnia, and IBS flare.  I seriously am ready to just lay down, cry my eyes out and just give up.  My son and daughter in law have a vehicle but they don't have the gas or money to drive me.  Since STBX is NOT giving me the money weekly that he agreed to in our notorized statement, I don't have any extra money to give them for gas to take me.  As a matter of fact, I'm not even sure I have enough money to pay for my meds.  I've always had insurance when getting them, but our insurance year started over new the middle of last month, so I don't have a clue what it'll cost without the deductable met.  I have $31 to my name for right now.  Yep, I'm ready to just give up.

**ETA I had to edit this post 3 times now to fix spelling errors.  I guess I'm in a FibroFog flare too.

Now What's Wrong With Me?

This afternoon I received a call from my rheumatologists office.  I have an appointment a week from today, so I figured it was just a reminder call.  Nope.  My rheumy has decided that I need a bunch of other consults.  I live around 2hrs from The Cleveland Clinic, so they scheduled everything for me in the same day.  Boy is it going to make a long day though.

My original appointment with rheumatology is for 2:30pm.  Now, I also have a 10:45am appointment with the GYN department.  As soon as I'm done there, I need to head to X-Ray.  Once I'm done with X-Ray I need to go to the lab for a blood draw.  Then hopefully after that I'll have time in there to grab some lunch at the hospital (Oh joy!  Hospital cafeteria food.) before my appointment with rheumatology.  After that appointment I have to go have an ultra-sound done. Then, a 2 hour drive back home again.

I'm grateful that my soon-to-be-ex-husband is willing to take a vacation day and take me.  -As long as he follows through with that.  He's been pretty bad at saying one thing, then doing another since he left me April 8th.  If he doesn't follow through with this, I don't know what I'll do because I don't have a working car at this time.  Even if I did, I have horrible anxiety and freak out in heavy traffic to the point that I sometimes cry...and this is when I'm just a passenger.  I absolutely couldn't handle being the one to drive it, and driving it alone.  On the other hand, it's going to be a long awkward, stressful day being with him all day I'm afraid.

I'll admit that I'm a little worried about these other tests.  Especially the blood draw.  It's to check my WBC count, because the last two I've had done have been high.  I was told that Dr. Gota is very concerned about this and if this one comes back high as well, that I'll need to see a hematologist.  I don't have a clue what this means, and wasn't given any information as to what this means.  Whenever I'm told that my doctor is concerned though, and a mention of having to go to another type of specialist, is enough to worry me.  Knowing that I'm doing it all with the man I'm still madly in love with, and that he's told me he doesn't love me and in all honesty doesn't even know if he cares what happens to me, is going to make it all that more stressful I'm afraid. 

If you all could spare some good thoughts, positive energy, and/or prayers for me, I'd be very grateful.  I need good thoughts that I don't get scary news concerning my health...and prayers that he isn't a mean jerk to me while I'll be with him the entire day.  I'm anxious to get this over with and what new, if any, diagnosis' I get from these tests.  If it's something bad then I'd rather know sooner then later, and face it head on.

The Cries Of Chronic Pain

The Cries Of Chronic Pain

I sit and yawn, all night long,
My eyes, they burn like fire.
I can not sleep, for then I weep,
So tired, for sleep I desire.

The aches and pains, my memory games,
The cramps and numbness I feel.
I patiently wait, and try not to hate,
This illness, my fate won't seal.

Sometimes it's cramps, sometimes it's pain,
Sometimes it's memory loss, recalling the words in vein.
Sometimes it's numbness, sometimes it's depression,
Leaving one to feel, that they are to blame.

I do not see your sickness, some may say to me,
You have all your hair, and you're standing here.
Not in a hospital, or in a wheelchair,
Or anything else, that you can't bare.

Don't you see my weariness, and the dark circles around my eyes?
You don't see the tears I cry, or the fear that I won't rise?
The feeling when you look for a word, to find it nowhere around,
Sometimes you feel crazy, and not like you're so sound.

This illness doesn't discriminate, it really doesn't care,
You can be any age, don't think that you're too rare.
It's unrelenting in it's attack, it doesn't care where you're at,
It strikes you like a theif in the night, robbing you of all your delight.

Not enough research, no answers to share,
No cure for this illness, nobody to care.
No magic pill is in our sight, no government grants to make things right,
No big budgets, to forge an attack, no relief  through the night.

Sit and plan your day if you dare, with this illness it will not care,
It will not care, what you want to do.
This illness will try to define who you are, leaving you feel empty,
your heart in a jar, leaving you with feelings that are just untrue.

One by one, we have to fight,
speak our minds, and make things right.
Cry out to one and all, make your voice heard,
Put up a fight, never give up while looking for a knight.

The more that hear, and learn to understand,
invisible illness will lose the upper hand.
Chronic pain, our way of life,
Someday will not, give us strife.

Don't sit silent, in your own pain,
Stand up and demand, the world make a gain.
Gain to understand, this illness and it's desire,
Science needs to learn, how to put out the fire.

The louder we speak, and the straighter we stand,
The better chance we have, to make the demand.
Demand that fibro, and all chronic pain,
Get the funding it deserves, so our lives aren't in vein.

Chronic pain can get us down, make us lose our own self-esteem,
Only if we don't let it, we need to fight like a team.
One voice for all, let it be known,
We won't stop, we'll continue to scream.

Until a cause, and a cure is found,
We won't shut up, or lie on the ground.
We will fight with all we've got, educating the public never to stop,
Not until a cure is found, will they be able to drown out our sound.

Copyright © The Fibro Frog and Amy Mullholand.  Reproductions available with written consent and a linkback to this original copy.

Could I Have A Magic Pill, Please?

My first appointment with Dr. Carmen Gota at The Cleveland Clinic was February 1st.  She told me she'd see me back again in 3 months, so when I went to leave I told that to the lady at the desk.  She told me that they don't schedule your appointments while you're there, that I'd receive a letter in the mail telling me the date/time.  I waited and waited and still hadn't received an appointment letter.

Last week, I called the office and told them that I hadn't received an appointment letter yet, when my 1st appointment had been, and that she'd wanted to see me again in 3 months.  The lady I spoke with took my phone number, and said she'd check into it.  I still hadn't received a call back, so I called again.  I spoke with the same lady that I spoke with last week.  She told me that they did have me scheduled and that my appointment is May 10th. 

I started reflecting back on the past three months.  How so much has changed in 3 short months.  90 days.  In that 90 period my life has been turned completely upside down.  February 1st on the way home from the appointment my husband was telling me that I'd never be alone.  I'd always have him even when our children were grown and long gone.  I was told how WE'd face all of my diagnoses together.  We were comfortable enough with money that we stopped and had a nice meal on the way home.  I had a son who was in the last stretch to graduate from school. 

Now, I'm separated from my husband facing a divorce.  My son that's a high school senior is married with a baby on the way.  I'm so broke that I'm not sure how to even have the gas money to GET to my appointment.  -Don't get me wrong, my father will take me and not take a penny for gas but he's 73 years old.  I'm 41.  I absolutely *hate* depending on him, and taking from him.  It's a long drive from where I live, and he lives 30 minutes farther away from me. 

I'll be honest, I don't really know why they even schedule you for 3 month appointments.  It doesn't seem like there's anything more they can do for me, so I don't really see the point.  It'd be nice if I went in there, and told them my symptoms are even worse..all of them...pain, depression, insomnia, etc and they could do a med switch that would actually help.  I'm certainly not hopeful though. 

We need more research into Fibromyalgia.  Scientists need to find out how this beast really works.  If they can figure that out, then maybe a cure would follow.  I've never been a pill taker.  I've always hated medicine.  I even have never liked to take a Tylenol.  How ironic that at this point in my life, I now dream of a doctor handing me a magic pill I could take that would make me feel like a real, living person again.  I'd gladly gobble it down every day.  A pill that would take away all of my pain from fibro and arthritis.  Take away the pain of the bone spurs.  The pain of the tarlov cysts.  A pill, that would take away my insomnia and my depression.  -And let me tell ya, I can honestly admit that I really am depressed now.  The last 3 weeks have about killed me.

People afflicted with fibromyalgia need to start banding together and demanding that more research is conducted.  We need to be ONE voice, that's heard all the way to the White House.  We need to gain backing of large industries and pharmaceutical companies.  How many organizations are out there for just about any other illness?  Most have dozens.  Sadly, a lot of people haven't even heard of fibromyalgia.  Those who have, are usually misinformed and think it's nothing but hog wash.  These misconceptions need to be dismissed.  People need to understand.  If scientists and doctors can't fully understand it though, how can we expect common people to?  Every one of us need to advocate for research and cure.  We need to advocate to educate the general population.  I'd LOVE to be able to book seminars at every med school across the United States.  I'd love to present a seminar "Fibromyalgia - A Patient's View" to every med student across the country.  They need to hear how fibro truly affects and limits us, in our quality of life.  They can read about it from a book all they want.  Until they really sit and listen to how it truly affects us, they'll never get it even a little bit.

I know that my "magic pill" won't be dispensed to me on May 10th.  My hope though, is that someday it will be dispensed.  To me, to you, to anyone and everyone that lives the daily struggle of fibromyalgia and chronic pain.  I'm still trying to figure out the "how's" of educating and advocacy of chronic pain, but when I die, I know I'll have died trying my best to get the word out there.  My kids are pretty well all grown, my youngest is 16 years old.  I don't have a husband now.  I really don't have much of a life, in general.  What I do have though, is a voice.  I have experience.  Experience living the daily struggles of chronic pain.  With my voice, I demand to somehow be heard.

I Have To Keep On, Keeping On

I think the last blog post I've done, was the one telling you all that my husband has left me and want's a divorce.  Well, it seems that when it rains, it pours.  I can't begin to tell you how badly it hurts to completely love someone with every piece of your being, and have to hear them say "I don't love you.  At all. I haven't for a really long time now, and I just can't keep pretending that I DO love you.".  To hear the person you love tell you "Go find someone else to fall in love with.  It doesn't bother me in the least to think of you with another man.".  My heart just wasn't broken, but it's shattered.  Completely shattered, to where I think there's too many tiny, broken pieces to ever be put back together again.

My husband left me on Easter Sunday.  On that following Thursday, my son came home from school and parked the car.  About 15 or 20 minutes later he went out to start it, to run uptown real quick.  It wouldn't start.  Come to find out, the oil pump had gone out of it on his way home from school, so it hadn't been pumping oil through the motor that whole time.  The engine was seized up.  I waited until the following Monday (this past Monday) evening and then took pictures of it.  I listed it on craigslist telling exactly what had happened and that the motor was seized.  I asked $600 OBO figuring no one would even call on it.  I had checked the junk yard though, and knew I was only going to get around $312 for it if I took it there.  Around 10pm that night, an older gentleman called me on it.  He lived in the next town over and asked if he could come look at it the next morning at 9am.  He came, looked it all over (it was a great car until this happened to the motor.  The exterior and interior of the car was all in GREAT shape.).  He talked to me for about 45 minutes then told me he was going to take it off my hands.  He said he had another motor for it he was going to put into it, then he hoped to get $2000 out of it reselling it.  To my shock, he counted out (6) $100 bills.  I got the whole $600 for it.

The next day, Wednesday of last week, I found out that my son's fiance was pregnant.  She already has a 9 month old little girl, and her and my son was planning on getting married this June.  They are young.  My husband and I had tried to talk them into waiting a couple years before they got married, but they wouldn't hear of it.  She will be 19 next month, and my son will be 19 September 1st of this year.  Now, they're going to be 19 and have 2 children, under the age of 2.  It's going to be hard.  In light of the circumstances, plus the fact they were already planning to marry in a couple months anyway, they went to the court house this past Friday and got married.  My heart is heavy for them, but I'll stand by them and do everything I can to try and help and guide them through marriage and pregnancy.  Them, plus my step-granddaughter live with me.  My new grandbaby is due December 26th.  Besides the rush of a wedding Friday morning, I woke up to find that my soon-to-be ex had pulled almost all of his paycheck out of the bank, not honoring our notorized agreement of what he was to pay me each week, so that I could make the bills.  I needed to pay my electric bill Friday, and was left without enough to do so, let alone to grocery shop.  I called to see "why" he did this, for him to scream at me that he never wanted to see me or talk to me again, and that beyond a doubt our marriage was completely over.  Our gas bill has always been in my name, but our electric and cable/telephone/internet has always been in his name.  I was told to get those utilities out of his name by this coming Friday.  Well, that takes money for security deposits.  Money that he took instead of giving to me per our agreement.  So, I'm not really sure how I'm supposed to get them into my name by this Friday.  I'll have to call tomorrow and see if there's anything they can do for me.  I can't describe the hurt that him taking that money, and the words he said to me, did to me.

I've really been slammed the past few weeks.  I've had days where all I want to do is lay in my bed and cry all day/night long.  I've had a few nights where I did cry myself to sleep.  All of the stress has triggered a pain flare, and I've been in some horrible pain.  -Like tonight for example.  Unless I just want to lay down and give up, I just have to keep on, keeping on though.  I'm too stubborn and strong willed to just give up.  What I do have to do though, is to find a way to bring in an income.  My pain levels and depression are too bad for me to find a traditional job right now though.  I honestly have felt for a few months now, that my calling is public speaking.  I've felt that public speaking for advocacy and awareness is why I got sick in the first place.  If anyone reading this could talk to their church, college, or any group or organization they belong to, about bringing me in as a speaker of chronic pain/invisible illness I'd greatly appreciate it.  I'm praying that someone out there will give me a break, and take a chance on me.  I'm confident that I can provide a great seminar with a lot of resources and handouts. 





 I'm going to leave you all with some pictures of my son's wedding, and the new family.


Waiting on the judge to come in.  My DIL was excited but my poor son looked as if he may get sick LOL.