You're Kidding Me, Right?!

Remember my post last week that The Cleveland Clinic called me and told me the Dr. wanted me to have some other tests done, and a consult with another department?  This was a week before my scheduled appointment for today, May 10th.  They loaded up my day, starting at 10:45am with the last test scheduled for 3:15pm directly after my rheumatology appointment. 

I get nervous when I'm with the doctor, and half the time there's things I want to discuss with her, but then forget.  Partially due to my nervousness and partially due to the dang Fibro Fog.  This time I was good.  I sat and wrote out a list of important things I wanted to discuss with her.  I knew, after having so many appointments in one day, and after the 2-hour drive to get there, I'd never remember everything without my list. 

I was actually excited to talk with my rheumatologist today, because I've really been struggling.  I need some sort of med change because what I'm doing, just isn't enough.  I've had some days lately where I can hardly move my legs enough to walk.  The insomnia has been terrible.  Depression has set in between the physical pain and the fact my husband walked out.  I've been worried and stressed about money, because I hadn't worked in years and my pain and fatigue level is just too much right now for me to work.  I have a lot on my plate right now both physically and emotionally.  I've been doing a lot of research, because I've felt like something has been overlooked due to the fact that I always have an elevated SED rate, always have a negative RF, and I've had 1 positive ANA and 1 negative ANA.  I wanted to discuss the idea of polymyalgia rheumatica with her today.  A dose of steroids and maybe we'd have an answer.  It can't hurt to try, right?  I may get lucky and reduce and/or relieve the pain.  My symptoms fit and my blood results fit.  I was soooo excited to possibly have an answer to reducing my pain today.

Of course, the insomnia was bad last night.  Knowing that I had to get up at 6:15am because my STBX that I just caught cheating on me Saturday, was going to be here to pick me up at 7:30am didn't help matters any.  I was worried about being in the car with him for the ride there and back (not worried about anything physically...he's never ever been physically abusive, but I was worried for myself emotionally because I love him so much and I'm so hurt). I was also worried about these tests and what the results would show.  I took my amitriptyline and my ultram.  I even took a dose of NyQuil to try and knock myself out.  I finally fell asleep between 2:30-3am.  When 6:15am rolled around, I'd have rather taken a beating, but crawled my way out of bed.

We get to the hospital campus, and are trying to find parking garage 2, but we keep hitting all of these one way streets.  STBX was mumbling a few curse words and I kept apologizing.  He kept telling me none of it was my fault, so to quit saying "I'm sorry".  We finally find the garage, but of course all of the spots on the same level as the catwalk that leads to the building I needed to go, was taken.  We go up one more level and finally find a place to park.  I felt nervous about the tests I was getting ready to do, but boy did it feel good to get out of the car.  My back, neck and knee was killing me after the 2-hour car ride.  We get to the cat walk and open the door to see policemen and a hospitality worker telling everyone to turn around and leave.  What?!  The guy says to us "I'm really sorry but all appointments in this building have been cancelled for today.  This building has lost water and power.  Please turn around and leave.  Call tomorrow to reschedule your appointments.".  Oh. My.  Gosh.  You're kidding me, right?!  "No mam, I'm not.  I apologize for any inconvenience this has caused.  Please call tomorrow to reschedule your appointments.". 

So after walking back to the car, and heading back home, I started crying.  I felt silly and didn't mean to, but I couldn't help it.  STBX looked at me and was like "Why are you crying?".  Oh boy did I want to unload and tell him ALL the reasons I was crying.  I managed to choke out that I was crying because for 1. I'd borrowed gas money to get there from my parents.  2.  STBX had to take a vacation day (that he was already in arrears on but he has a GREAT company who approved it anyway knowing my health issues and that he had to take me to Cleveland.  3.  Because I was hoping for a med change because I can. not. take. this level of pain for much more.  4.  Because I was hoping to be able to look up todays tests, tomorrow online on the MYCHART site.  After having almost completed nursing school, I know what I'm looking at and I'm really really worried about my WBC.  If it's elevated again, I have to go see a hematologist.  That scares me.  5.  I'm crying because I just can't take one more thing going wrong in my life, at this particular point in time.

So yep, I was a big 'ole cry baby for awhile, on the way home.  I just couldn't help it though.  My phone and internet was to be turned on yesterday, but nothing was working.  We called them and they said everything was turned on, so they'd have to send a repairman out today to see what was wrong.  About 10 minutes after we returned home from Cleveland, the guy showed up.  There was a problem with our line, down on corner.  He had it fixed with about 45 minutes though, so all is good on that front.  -I'm finding something good to be grateful for today LOL.  I really missed connecting with those on my facebook fan page the last few days.  So I honestly am really grateful to have my serviced up and running.  Hopefully I get some rest tonight, because I'm so tired that the Fibro Fog is bad.  If I've made any typo's, please excuse them.  =)  I hope everyone has a wonderful night. 

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. 

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.