Dear God

"Dear God,
I grew up hearing the phrase "God helps those who help themselves". Well, when are you going to give me that help? Years ago I worked 3 part-time jobs (worked Mon-Sun. 7 days a week) plus carried 18 credit hours in college, as well as being a single parent to 4 children ages 6 and under. In my situation now, I've sent email after email. I've blogged, I've tweeted, I've used every social media network I possibly can trying to make a new career for myself. Still not a break. I certainly feel that I've tried my best to "help myself". All I've received for my efforts is an incurable illness, a husband who cheated and left me, sadness, rejection and disappointment. I have gained a few more "fans" to at least show me I'm not alone in my daily, chronic pain. For that, I am thankful. Everyone says to me "In HIS time, things will come together for you". When's that time? Will it ever come? Will I ever be able to feel happy again? Or that my life is worth something? How many more nights can I tell myself that "Tomorrow will be the day. Tomorrow things will start to turn around for me"? I know I'm supposed to have patience God, but patience doesn't pay the bills or buy food. Patience doesn't give me a sense of security or tell me that everthing's going to be alright. Patience doesn't wipe away the tears that are running down my face, nor does it cure my illness or the illnesses of those around me who are also suffering. I've cried out to you Lord, begging for your help. To at least have a sense of peace. To at least not feel so alone. I don't know what else to do."

This was my Facebook status last night.  I had a friend comment and ask me "Can anyone you're contacting about a seminar see this?".  I told her no, that my facebook is locked down tight (due to my impending divorce) and only friends can see anything.  Not even "friends of friends" can see photos.  I've thought about this all day, and you know what?  I don't feel that there's anything in that status that would "hurt" me in my prospects of conducting a chronic pain/invisible illness seminar.  At first, her comment made me feel ashamed, like I'd posted something really wrong.  Her comment made me feel weak. 

After thinking about this all day, I've decided that I'm not going to feel bad for posting my true feelings at that particular time.  I'm not going to let it make me feel weak.  I've decided that her comment, is one of the reasons why I want to conduct seminars on living with chronic pain/invisible illness.  She obviously doesn't get it, and that's ok.  She's even a nurse, and a very good one at that, but she just doesn't understand how my illness works.  She probably doesn't have any experience with it. 

When living with a chronic pain/invisible illness that there's no cure for...or even a solid treatment plan for, depression is a normal symtom of the illness.  Depression is even listed on everything you read, as a symptom of fibromyalgia.  Even when things are going as good as can be expected in a person's life, when they have an illness like mine, they still have bouts of depression.  With my husband walking out on me April 8th, and already in a new relationship with an old highschool girlfriend, not paying me the money I need to support my daughter and myself, and the fact I haven't worked in years due to my health, I'm under a lot of pressure.  Add in my illnesses, and in all honesty I think that I'm actually coping pretty good.

Sure, I get sad.  I cry.  I feel depressed sometimes, but I get out of bed every day.  I do what I can to clean my house with the help of my kids.  I keep up with 2 blogs and 2 facebook fan pages every day.  I keep beating the bushes, looking for opportunities to possibly present a seminar. Public speaking for advocacy and awareness is my passion, and I won't give up on making a career out of it.  I keep up with my medicines and doctor appointments.  I've taken the initiative to make phone calls that need made, to speak to attorneys, to try and get bills into my name and keep up with them.

In all honesty, I think I could be doing a whole lot worse then what I am right now.  After thinking about this all day today, I decided that if anyone reads my status from last night that had been considering hiring me to do a presentation decided not to hire me because of those words, then they're the one's who really need to hear my presentation.  They need to be made aware of what it's like to live the daily life of someone with a chronic pain/invisible illness.  What they will see if they read those words, is that they're going to get a presentation from a person who's honest.  From a person who isn't ashamed to tell the truth of what living a life such as mine, is like.  Someone who's willing to stand up and tell people how impurfect life is when you're faced with a chronic illness.  They will see that I don't quit.  I don't give up.  That I'm strong enough to keep facing my life day after day even when it's tough.  I hope they see the passion I have, to try and educate about people like us. People who live their life waiting, hoping, and praying for a cure.  The only way we'll ever have a cure, is if enough people hear our stories.  If they start to truly understand what life is like for us.  If enough demands for funding is made.  If pressure is put on political parties and pharmaceutical companies, to fund research.

I'm not afraid of my status.  I'm not ashamed of my status.  I'm not ashamed of my feelings, nor of my illnesses.  After thinking about it all day long, I'm proud of my status.  Since my facebook is locked down tight, I've decided to take that status, and turn it into a blog post.  That is how strong-willed I am.  That's how honest I am.  That is the type of professinal speaker you'll get, if you hire me.  I will never apologize for my true feelings.  I'll never apologize for speaking the truth.  I hope and pray, that I'm the type of speaker that you'd be proud to hire.

The Face Of Rejection

Another rejection email came in today.  I had received a lead from a lady on FaceBook, to contact the pastor of her church to see if he'd donate space at the church for me to hold a seminar, then sell tickets to the seminar to make my money.  This lady is local to me, within about a 30 minute drive.  She too, lives every day in chronic pain and wants me to get a seminar scheduled somewhere so that she can attend.  I was really hopeful about this one.  Unfortunately he emailed back today saying that they don't donate nor rent space out at the church and they'd never sell tickets to a speaker.  I'm not gonna lie, with this one, tears stung my eyes but I blinked them back. 

I knew upfront that I'd face a lot of rejection in the beginning.  My hope is that after I have done one or two, that word of mouth will help me with booking more in the future.  Just because I've been rejected by 3 or 4 places in the past week, I'm not going to quit.  I'm passionate about this.  I need this.  Others that live every day of their lives need this too.  I still feel that this is what I'm supposed to do, therefore when the time is right, the doors will open.   I just kind of feel like I'm hitting a brick wall.  I'm running out of ideas of where to turn, to try and make this happen.  I had received an email from a Dr of Rheumatology at a local medical school that told me the university didn't have funds for this type of thing, but that my best bet would be to contact some drug companies.  They at least may be willing to provide me with grant money to set up my own seminars.  The old saying it takes money to make money is unfortunately very true.  If I had the money, I could just book a conference room at a hotel, and pay for advertising in newspapers, etc. to the event.  As it is, I don't have a pot to piss in right now though. 

I'm not looking to get rich.  I don't care about being famous.  I just want to do something that I'm passionate about, advocate for something I believe in, and make a comfortable living to support my daughter and myself.  I'm only planning on setting ticket prices at $15 for one, or $25 for two.  I just want to get the word out about what it's truly like to live your life in chronic pain.  Present some of the latest research, and pass along some coping mechanisms and resources for people with a chronic pain and/or invisible illness.  My bills are fairly minimal and as long as I can make enough money to pay them on time without worry, buy groceries each week, buy necessities that my daughter and myself need, and have a little set back in case of an emergency, I'd be very happy and content. 

In the meantime, I've tried a few channels (including etsy) to sell a some of my photography work to bring in a little cash.  That too, has gotten me nowhere.  Between all of the rejection, physical pain I'm in every day, and the mental pain and worry due to my impending divorce, it would be so easy to just lay down and cry, and never get up again.  I refuse to do that though.  I'm a fighter.  I always have been, my entire life.  Every day I tell myself to "just hold on".  Tomorrow will be the day that I get a break and things will start getting easier.  I tell myself that sooner or later, something good has to happen to me, because I'm trying so hard to make good things happen.  I'd heard all my life from my mother, that "God helps those who help themselves".  That's what I've been trying to do.  I've even done my best to stop asking "Why Me?" about things, because I'm a believer that everything happens for a reason and that down the road the answer to that will be made clear.  I have to admit though, it's starting to get really hard to remain optimistic.  One can only tell themselves that tomorrow will be a better day so many times, before it becomes hard to believe that.  Alas, I will keep racking my brain trying to make things happen.  Trying to come up with ideas.  I may be down right now, but please don't count me out yet.
 

Here I Go!

I really love this photo "Education = Future", because it's so true.  It's way more than what meets the eye at first glance.  One would look at this, and think along the lines of "You have to get an education to make a career for yourself, in the future".  True, very true. This is also true though, in that if people are educated on any subject or topic they then understand it better.  If there's better understanding, there's more empathy.  More compassion.  More demands to find answers and cures.  This is where I'm going to come in at.  I want to educate as many different people as I can about chronic pain and invisible illnesses.  I want to educate everyone from educators, to medical personal, to stay at home moms, to work out of home moms, to researchers, to lawyers, to students.  Pretty much anyone and everyone. 

I won't make any bones about it.  I don't have a fancy degree.  I don't have any initials behind my name.  Heck, I haven't even had a college level class on public speaking.  What I do have though, is first hand knowledge of what it's like to live a life with invisible illnesses, and being in pain every single day.  Also, I have a burning desire to educate on these topics, along with a strong will and I'm not afraid of rejection off the bat.  I know with hard work and dedication, I can do anything I set my mind to. 

My oldest daughter is 22 years old.  We aren't a rich family, but we always told our children all through their lives, that they can do anything they want to do as long as they worked hard for it.  My daughter was still 17 when she graduated high school.  She went to a nearby state university, utilizing some scholarships and student loans.  She carried 18-21 credit hours making straight A's.  She did this while also working 40-50 hours a week at night, in a factory.  After her sophomore year, she did a lot of research as to what college or universities would help give her an edge in the career path she was heading down.  She applied to University of Denver, and was accepted. Not knowing a single sole, she packed her suitcase, hopped a plane, and started a new life.  My daughter graduated with her undergrad last June.  Now, she's still at DU as a grad student.  Not only is she a grad student in economics, with focuses on both international and developmental economics, but she's also a teaching assistant for the econ department which helps her with her grad school tuition.  In addition to this, she also is a tutor for the student athlete department and the student disability department.  Nikki also does private tutoring, on the side.  To say that I'm proud of her hard work, her ethics, and her dedication is an understatement. 

With all I've personally been going through lately, Nikki sent me an email.  I want to quote something from that email.  She said: " In my personal statement I mention that while I did not grow up in a family that had very much money, in fact we had no money, you and dad always told me that I could be anything I wanted to be as long as I worked hard enough. ".  This brought a mama to tears.  To know that she was listening all the times we told her that.  To know, that is what gave her the inspiration to break the cycle of poverty.  If I could help to instill these qualities in my daughter, then how can I not live by this rule myself?  I must start practicing what I preach. 

With all this said, I must give credit to my daughter for inspiring me to start this mission of mine.  This mission of educating the public on chronic pain and invisible illnesses.  If not for Nikki, I honestly don't think I'd have the guts; the self-esteem, to move forward and pursue this.  Because of Nikki though,  I've found the contact information for the first place I'm going to contact in regards to trying to book a seminar.  It's a nearby university that has a medical school.  I'm going to contact the medical school, and the Student Life department of the campus.  I'm hoping that one or both, will give me a booking.  I'm also going to try another nearby university too, that doesn't have a medical school.  I'm sure there are many students, and faculty alike, that suffer from chronic pain and/or invisible illnesses.  I'm confident that I can provide a much needed service to many out there.  I'm nervous about finally taking this step, but I can also say that I'm excited too.  This may very well be the beginning of a brand new career for me.

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. 

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.