Friday, April 27, 2012

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.

Sunday, April 22, 2012

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.

Thursday, April 12, 2012

Motivation and Advocacy - Public Speaking

Friends, paid public speaking is something that I was trying to set myself up to venture into within the next 6 months to a year. The Fibro Frog is gaining exposure and talk in several circles. Life is full of twists and turns though, and due to the turns my life has taken, I need to just jump right in. If you know of a group or organization that would benefit from a motivation and advocacy speaker on living with chronic pain and/or an invisible illness, please pass my name on to them. Several handouts, as well as resources will be included in all seminar's.  As long as they're willing to pay my travel expenses along with my fee, I don't care where in the country they're located.

Monday, April 9, 2012

Trying To Pick Up The Pieces

I jinxed myself last week or something, by writing the blog post on divorce statistics for those with a chronic illness.  Last Thursday when my husband came home from work, he told me that he had been having chest and shoulder pain due to stress.  He said we needed to find a way to get his stress level down.  I asked him what he was so stressed about and he said "I'm stressed out about your sickness, and I'm stressed out about bills".  I felt horrible, because even him being stressed about bills I feel like falls back on my health, since I can't work due to my health. If I could work too, then he wouldn't be so stressed about the bills.  I told him that I would look for a job, to help with the bills.  He said "No, you can't.  You can't even wash supper dishes without taking 3-4 breaks while doing them.  You can't work.".  I said "Well, why don't you take a day like every other weekend to just go off by yourself and do stuff you like to do.  Just take a day to get away from everything".  He said "Fine.  Since I don't have to work tomorrow for Good Friday, do you care if I go scout for turkey?".  He's been really excited about wild turkey season starting the end of this month.  He wanted to go to a state park that's about 45 minutes away from us.  He said he'd leave around 8am and be home by 1pm at the latest.  He said when he got home, we'd go do our Easter shopping.

1pm came and went, with no sign of him.  I tried to call his cell phone, but it went straight to voice mail.  Repeat that same scenario for the rest of the day and night.  All day Saturday.  By Saturday evening I was worried sick about him.  Where he'd been having chest pain on Thursday, all I could think about was that he'd had a heart attack walking through the woods and was laying out there dead.  Around 11pm Saturday I left a voice mail saying I didn't know what was going on and I was worried sick about him.  Sunday morning, he finally sent a text to our 16yr old daughter saying that he was ok and that he'd be home that night.  She asked him if he was "leaving us" or something.  He texted back saying "I'm leaving her but not you".  Nice.  So he told our 16yr old daughter through a text message that he was leaving me, on Easter Sunday, after not coming home to even take me shopping to have the stuff to make an Easter dinner or to make an Easter basket for our daughter or anything.  See, he had our car along with the keys to his truck.  He also had my debit card.  I also thought he had our check book because I couldn't find it.  It turns out though, that it was here the entire time in an inside pocket of his work coat.  There wasn't any way for me to go shopping without him. 

He finally showed up here around 10pm or so last night.  I was scared to death and a nervous wreck, waiting on him to get here.  Especially from the way he did things...staying gone Friday, Saturday and Sunday without any reasoning....telling our daughter through text that he was leaving me....not providing an Easter celebration for his family.....etc.  That was all SO wrong of him.  I figured he'd be a total jerk to me when he saw me because of those actions.  He really wasn't though.  He told me that he loves me from being with me for 19.5 years, and being the mother of his two children, but that he wasn't "in love" with me.  He said that he'll always care about me though, and that he'll always be my "friend".  He said that he'll still pay all the bills, make sure I get to my doctor appointments, and have my medicine.  He said that he just hasn't been happy for a really long time, and that he's getting older and just can't "pretend" anymore. He packed his truck full of his stuff, and left.  He's moving in with his mom.  -He says that's how he'll be able to afford to still pay all of the bills.  He told me I can have the house so that I make sure I always have a place to live.  -We'd bought our house at sheriff auction due to back taxes, therefore it was dirt cheap and we paid for it in cash.

Being sick has shown me that the cliche "Life's too short" really is the truth.  I love him so much, that I want him to be happy.  So if he isn't happy with me, then I have to let him go and not beg him to stay.  Since getting up Friday, I've only been able to force down a couple bites of food.  I've barely slept.  I burst out crying uncontrollably.  Everything in my body hurts.  Every muscle.  Every joint.  My head.  Most of all, my heart.  I'm worrying about the fact that I can't work.  Sure, he says he'll still pay everything.  He's even signing a notarized letter today when he gets off work saying that he'll pay me child support/alimony/maintenance every week that's enough to cover my bills, for a period of 10 years.  But what happens if he doesn't?  What happens  if he just stops?  What am I supposed to do?  Believe me, I wish I could work.  I'd love to get out of the house.  To be around people and meet new people.  To feel the pride of bringing in a pay check.  The sad reality is though, I just can't.  I don't have a degree in anything, only a high school diploma.  That means that any job I could possibly get would be work in a factory, in a fast food place, or in a store.  All of that is hard work being on your feet and lifting things.  When I stand long enough to fry an egg, I'm literally in tears before it's done, from the back pain.  How am I supposed to do this?  What am I supposed to do?  Even though I know this divorce is the best thing for all of us, I'm so scared.  I feel so alone.  I have a ton of questions in my mind such as "What's so horrible about me that he can't be "in love" with me?  Why do I have to have such $hitty health?" etc.  Somehow though, I must pick up the pieces and move on.  I'm just not sure how to do that when you've loved someone unconditionally and with your every being, for 19.5 years. 

Saturday, April 7, 2012

Enter To Win A Prize From Zuma The Dog Clothing Line

Zuma The Dog Review and Giveway brought to you by Mommy and Baby Reviews and Giveaways.

When I first came across the Zuma The Dog clothing line, not only did I fall in love with the clothes but the story behind them. Sam Morgan, the owner of Zuma The Dog clothing line. Sam is also mom to Zuma's adorable little model, Caleb and the real Zuma, who is a Jack Russel and the mascot behind the clothing line.

Zuma is more than just a pet or co-worker to Sam and Caleb , Zuma is a huge part of their family. Zuma came into the Morgan's lives in March of 2007. Sam was pregnant with Caleb and knew that caring for a new puppy while being pregnant would be a challenge. Training a puppy is hard work to begin with, Sam was determined and set her mind to training their new puppy. Zuma has a bright bubbly, naughty personality that made the Morgans fall in love with him right away. Zuma was an ordinary puppy into everything and full of energy. From digging and burying things in the garden, bringing sticks, stones, balls and toys for us to throw, to chewing plants and trees. His persistence is relentless, but in his mind, he thinks he is helping.

The Morgans soon found out that Zuma was a special dog, who would provide their friends with fun stories about Zuma's funny little antics. He would take their family on a journey that would end up running their own business, Zuma The Dog Clothing Line was born.

My kids were recently sent Zuma several items from the Zuma Clothing Line. The kids love the entire line all because of Zuma's picture being on them. They love Zuma's story and think it is so cool that a dog has his own clothing line named after him. The clothes are great quality and extremely colorful. I love the bright yellow and orange colors. Kids will be kids and clothes will not stay clean. Lexie decided to wear her sweatshirt out side to play in the dirt and I was afraid that it was stained for good. Threw it in the washer and it was good as new. The Zuma clothing line has everything! T-shirts, sweatshirts, jeans and sweaters!! You can see the full line of colorful clothes on their website.

Be sure to visit Zuma and print out their fun coloring sheets for your kids to color!

Win It!

One winner will receive a long sleeve Zuma shirt.

Giveaway starts 4/7 and ends 4/28 at 11:59 pm est.

Open to US and Canada residents.

(This contest is in no way affiliated with Facebook. I received one or more free items to write my review. I was in no way influenced by the sponsor nor did I receive any monetary compensation. I only recommend products I think are a good fit for my readers.)

a Rafflecopter giveaway

a Rafflecopter giveaway

Tuesday, April 3, 2012

Pain Flare Vs Breakthrough Pain

This past weekend I mentioned to a family member that I was in a pain flare, that had started last Wednesday. She said "Oh, so you have to take more pain medicine to keep the pain away then?". I told her no, then explained the difference between a pain flare, and breakthrough pain.

So, what is the difference between a pain flare and breakthrough pain? A flare simply means an excaburation of symptoms. If your pain level is normally a 1 or a 2, and then it goes up to a 7 or an 8, then that's a flare. Usually with a flare, the usual pain medicine you take doesn't give you as effective relief as when you're not in a flare. A flare doesn't have to be related to just pain either. It can also be a flare in fatigue, fibro fog, or any other symptom. Basically, any symptom that you have, that intensifies without relief, is a flare. For your doctor to consider you to be in a true flare, your increased symptoms have to last for at least 24 hours.

With breakthrough pain, you may take a pain pill for your pain then before time for your next pill, the pain comes back. Once you take the pill again, your symptoms again settle down. This type of scenario is considered breakthrough pain.

Sometimes you can break a flare, just by increasing your rest and decreasing your activities. Sometimes you may need a short dose of steroids or a shot of cortisone. Sometimes an increase in pain meds will help. When all else fails, sometimes you just have to tuff it out until it breaks on it's own.

Last Wednesday, I started a flare. By late Thursday night, I was ready to call my rheumatologist. I didn't call on Friday though, because I knew that I wouldn't be able to be seen until at least Monday. My rheumatologist is at The Cleveland Clinic, in Cleveland, OH and it's approx. a 2 hour drive from me. My husband wouldn't be able to take the day off to get me there with that short of notice. Thankfully, my pain flare finally broke on it's own, on Sunday. This was the worst and longest pain flare I've ever had. The fibro fog that accompanied the flare was bad. It left me feeling drained, depressed and alone.

Although pain flares are to be expected when you have Fibro, CFS, Lupus, Arthritis, etc., it's still hard to deal with the symptoms when one hits. Try to figure out what caused your flare. Did you exercise too much? Were you in a stressful situation? If you can figure out your triggers for a pain flare, then you're better able to control the situations around you, that may cause a flare. I still haven't figured out what caused this last one I had. Rest assured, I'll pay more attention in the future though!

Monday, April 2, 2012

Win A Kidzikoo Sippy/Bottle Insulator

I thought we'd do something FUN again today! Good luck to all of my readers!

Adisyn had been on a sippy forever. She does drink mostly from cups throughout the day, but she still loves her sippy. I have been traveling a lot more throughout the day, and a sippy is a must. Keeping the liquids inside of it cool was much harder than I thought.
Until Kidzikoo that is.  My children complain if their drinks aren’t cool. They will not even drink it, and I don’t blame them. Who wants to drink room temperature juice on a hot day? And not to mention that if you put ice inside it will sweat everywhere. AND- in the winter- my kids need something to wrap around their cups because their little hands are freeze.
So, to prevent the complaining and the room temperature drinks- I was on the search for something AWESOME.
These Kidzikoo insulators keep the bottles and sippies the same temperature of whatever you have in them, without allowing them to sweat everywhere. These insulators work with both bottles AND sippy cups.
I really wish I had owned this when my kids were small and getting a warm bottle on the go was a very hard thing for me to do. With this you could simply fill up the bottle with warm water, slip the insulator on and then when baby gets hungry- throw in the formula. (Or pre-heat breast milk) All the same.. !!
If you look at the picture below>

you can see that they fit just about any bottle or sippy out there. They are extremely easy to put on. It doesn’t even take the maximum of 2 seconds to slide it on. It doesn’t give you any problems (of being too tight) and having to wiggle it on.
When you have it on, your kids won’t be able to pull it off though. It gently molds to the bottle or sippy. Also easy to get off. You just pinch the bottom of it and pull. Easy as that. It is also a GREAT protector for glass bottles (if that’s the kind you use.)

Did you notice that they are just as fashionable as they are functional? They have ten fun designs that fits just about every sippy or bottle on the market. I had trouble choosing my favorite because they are all so adorable and affordable AND made by a mom-prenuer. AND not to mention that they fit a RANGE of sippies and bottles (8-12 oz)
I hated when the kid’s sippies ended up sweating and leaving rings on the table. This prevents that also. So all in all- you GET more than you actually pay for. This prevents headaches all the way around, and how can I complain about that?

Out of the ten designs available, I ended up choosing the Julie Print. This is a red background with cute kittens and fish all over it. It has white stitching holding it together. I was never worried about keeping it clean though. Most of the time my kids are HUGE mess makers, and I had no doubt it wouldn’t be that bright beautiful color for very long. AND it wasn’t, but all I had to do was toss it in the wash with like colors. You also have the option of machine drying as long as you tumble dry. (Or just line dry it).
I love that she has included designs for both boys AND girls. That way I can purchase one for Aidan also. They are only $6.99 for one. So- you can purchase one for each kid, or one for yours and one for a friends’ or family members kid. They will be sure to thank you. It is a whole new meaning of fashion plus function.

About Kidzikoo

“Hi Kidzikoo Fans!  Lindsay Coleman here.  In case you don't know, I am the creator of the Kidzikoo!
Totally kid inspired, my son Landon has been the #1 driving force to make this new product from an idea to a reality.  Without him, I couldn't have done it.  Literally!  Here's the story...
One morning in October of 2010, Landon was sitting on my lap as he was drinking his cold milk out of his sippy cup. He reached back and put his little hand on my cheek and it was FREEZING.  I chuckled and said to him "burrrr, you need an insulator for your sippy cup!"  So, I marched upstairs to the computer to search for baby bottle/sippy cup insulators, thinking they would be found at any retailer.  Well, much to my surprise, I found NOTHING!  Immediately the light bulb turned on and the idea was born!
Over the past year, countless hours and tons of energy have been put into building this new business and creating the Kidzikoo for babies and kiddos around the world.  I hope you love them as much as I have loved creating them!

Lindsay, a "Mommy Inventor" is the president and CEO of LadyEdison, the parent and distribution company for Kidzikoo.  LadyEdison is dedicated to creating new and innovative products never before seen in the consumer market and distributing them to retail stores around the Globe.  Lindsay  hopes she can inspire other women to follow their dreams.
"Many people will knock your ideas and say you'll never make it happen. Use those who doubt you to fuel your passion and keep driving forward until you've accomplished your dreams. The sky is the limit and with good faith and hard work, all things are possible.  Believe in yourself and you WILL make it happen." (Lindsay Coleman)
LadyEdison is currently in the production of more products so stay tuned for their launch!”

I was provided with a complimentary product to review. All opinions expressed are my own and 100% honest. This is not a sponsored review.
ONE lucky Made.By.Jess reader will win a Kidzikoo of their choice.
To Enter:
Please make sure you read all directions for each entry. Mandatory entry must be completed for all additional entries to count. Please note: The mandatory entry is the first one listed on the giveaway form. IMPORTANT!: Where is says “Extra Info” please provide the required information. If there are no specific instructions, write the entry that you completed. Example: if the entry is to follow Made.By.Jess with Google Friend connect please make sure you add your  GFC name in the extra entry box. You MUST do this so that I can verify your entry. If your comment is the winner and it cannot be verified – it will be deleted and another chosen.
<Sorry for this, but there have been many blogs (including mine) that has trouble with people SAYING and not DOING.
Thank you and Good Luck!