My Fibro Fight

Human Thermometer

2009-10-15T08:29:00.000-07:00

Summertime is over, and I am not looking forward to the Seasons ahead. Fall is now here which means that cold is here. Fall is the pre show for Winter. And let me tell you, I do NOT like Winter. For a lot of reasons but the two main reasons are: Number 1: ITS COLD ---- And I live in Utah... Its not just a tit bit nippley out its FREEZING YOUR ASS OFF COLD here. Number 2: When you have Fibro the cold is one of the things that will make you feel worse then you have ever felt in your life.

The Fall time is cold, wet, and rainy. And actually I don't mind the rain. I love it. But I can always tell when there is a storm coming in becuase my body will ache and ache for 2 days and then the storm hits. Im a human Thermometer. A weather women who doesn't need the green screen to tell me whats going on. Yah, I'm that cool.

Winter time is dreadfull. And in Utah.. .Winter isn;t just 3 months... It drags on and on and on and on.... Usually we get snow around Halloween... The snow and cold doesn't stop until the end of April.. Thats is a hell of a long time. Not only does it make anyone with Fibro feel terrible but I am pretty positive that I have Seasonal Depression. I really just feel horrible during the winter. Physically and Emotionally. You feel when rain or snow storms are coming in 3 days before they hit, The damn wet air, the cold in the day and nights just make you tense your body up which makes all your muscles hurt which just makes you feel worse. Ugh. Could I be dreading Winter anymore?

I am really not looking forward to the Winter time. The Fall Season has not been to bad actually.. yet. A lot of rain but like I said I love the rain just don't love the way it makes me feel. This past week has been pretty tough. It has been raining and stormy every single day and every single day I feel it. Expecially today. My legs hurt so bad I feel like an 80 year old when I bend down and try to get up. My neck feels like there is charlie horses in them and my back feels like someone has just kicked me a bunch of times in the kidneys. Ugh, I am so not looking forward to the weather getting worse, and how I feel today times 10.

I would really love to live somewhere that the weather is nice and warm all year long. When I was back East in Massachussets the Humidity about killed me. I was there for a few days during the Winter time. I have never been so cold in my entire life. I thought I could tough it out becuase ya know " I'm from Utah I can handle the cold" EEHH WRONG! Its like needles in your face cold. I need some place like Arizona where even on Christmas day its 90 degrees and thats cold to them! I dunno if I would like THAT much heat though ... Dry air ugh could get miserable. I don't know. Where is a good place for Fibro people to live so they don't have to suffer when the weather changes to cold cold cold? Maybe California... Anywhere but here. If you could find a place for me before the Snow comes I'll have my bags packed tonight. Thanks.

Hope For Holli

2009-09-19T13:08:00.001-07:00

As most of you know I have been going threw alot of health problems. The main one right now is I am in need of a surgery to have a stint placed in me that will help keep my bladder and kidney functioning. My wonderful health insurance provider will not approve this surgery. The surgery is $40,000 dollars. Who has that kind of cash just laying around? Certainly not me. My friend Mckenna has been kind enough to create a foundation for me that people can donate money to help me get this life altering surgery. Every penny counts and means so much to me. I appreciate everyones love, support and thoughts and prayers. Mckenna, I can not thank you enough for doing this for me you are amazing this means so much to me! Thank you Mckenna and to everyone else! I love you all!!

hopeforholli.blogspot.com

House Call

2009-09-15T06:54:00.000-07:00

My fibro has not been to bad the fast few weeks. I don't know if its because I have been focusing on not being able to eat, pee, and sleep or what but its not been to bad. I have been feeling really crappy lately. I am still not able to keep anything. All I can do is sprite and Ensure. I know... sounds yummy right? I have had the same headache for about 3 weeks now. Ridiculous!

Picc Line

Peripherally Inserted Central Catheter

A PICC line is, by definition and per its acronym, a peripherally inserted central catheter. It is long, slender, small, flexible tube that is inserted into a peripheral vein, typically in the upper arm, and advanced until the catheter tip terminates in a large vein in the chest near the heart to obtain intravenous access. It is similar to other central lines as it terminates into a large vessel near the heart. However, unlike other central lines, its point of entry is from the periphery of the body ? the extremities. And typically the upper arm is the area of choice.

I now have a picc line.

I will have it until I have my surgery gets approved and done. Its actually really nice becuase I can wear it for up to a year and since I have been going on IV therapy like everyother week I don't have to get a new iv every other day. It wasn't to bad getting it put in. The only part that I felt was when they were feeding the tube threw my vein. That was uncomfortable but it wasn't to bad. My mom took a video of the whole thing I havent watched it yet though.

I have been doing IV therapy from home im doing fluids that also has potasium. My potasium levels got so low from throwing up so much that it was starting to affect my heart scary. On Memorial day I was really sick and my doctor called to see how I was doing and I told him not good. He immedialty asked for my address and said " I'm coming over right now!"

My doctor is awesome.

Quantom Science

2009-08-17T09:16:00.000-07:00

QUESTION?

Have any of the readers of this blog who also have Fibromyalgia ever tried any kind of alternative medicine? Such as herbs, teas, drinks like tahitian noni juice, or gone to any holistic doctors the ones who remove all the bad toxins and stuff out of your body?

If you have give me feed back I would like to know!

When I was I believe around 15 years old when I first got sick.. years before I was diagnosed with Fibro ( becuause they were still trying to figure out what was wrong with me) I had A septic menigitis.

Meningitis is a potentially fatal inflammation of the meninges, the thin, membranous covering of the brain and the spinal cord. Meningitis is most commonly caused by infection (by bacteria, viruses, or fungi), although it can also be caused by bleeding into the meninges, cancer, diseases of the immune system, and an inflammatory response to certain types of chemotherapy or other chemical agents. The most serious and difficult-to-treat types of meningitis tend to be those caused by bacteria.

When none of the treatments such as rest, medication, tests, more medication, surgeries were not helping they decided going to the therapy route.

I went to this doctor who believed that if I let go of all my frustration

about being sick and having to change my life completely all the bad energy in me and everything affected from menigits would come out of my toes and fingers....

Uhhh.... ok?

So we started and she had my mom hold my hands above my head and she had my dad hold my feet so that they could " feel the energy shooting out of me."

It was really hard to focus becuase I really wanted to give this a try and I am staring at my dad because he is holding my feet and he is just laughing his butt of because he doesn't really believe in any of this kind of stufff.

She asked questions about how I feel about having to

be home schooled, how it felt to lose friends becuase of always being sick, all kinds of questions like that. Then she asked me what is the one thing that I miss the most about having a health life and what I hate knowing I had to give up becuae of illness.

I said dancing.

I danced for about 8 years it was my life. I loved it. I felt like it was my thing. I was good at it. I loved it it was my passion. I felt that I could have a carrer in dancing and I knew what I wanted to do with life and it would be dancing. Dancing was my life.

I started crying after I had said that and she just shouted "Whoo! Did you feel all of that energy coming out of her?" ...uh... no.

that didn't really help me. I don't think I ever went back to her.

I have tried The Noni Tea from Tahitan Noni. I don't want to say it cured me by any means but I did feel a difference when I was drinking one cup in the morning and one cup at night. The tea is really good too. I don't care for the Noni Juice but the tea is very good. So maybe if any of you out there wanna try it ... just a suggestion =)

The point of this post is to talk about my Quantom Science Pendant ( to the left) that my awesome Fibro friend Rashelle's dad has given me.

The definition:

The Quantum Pendant utilizes specialized quantum physics, geometry and vibration harnessing technologies to help synergize the power of the human body's bio-energy system and allows it to run with optimum performance. Known as chi, or life force energy in some cultures, it runs through meridian points in our body. The Quantum Pendant's technology actually helps to repel interference frequencies that block the free flow of this energy throughout the body. Similar to upping the watts in a light bulb...the Quantum Pendant helps to instantly and dramatically increase the connectivity, flow and communication of your energy system.

I have been wearing it for about a week and half now, and I am not sure if I have noticed that big of a difference but I have noticed that I am not as achy in the mornings when I get up. I think that the mornings are the worst for me! Rashell suffers with Fibro as well and she has said that she feels that there has been a difference since wearing it, and I am so glad for her!!

And on a different health note I faxed in my appeal form with my doctors letter saying that this surgery that I am in need of ( which is to have a stent placed around my bladder functioning) my doctor has called it a medical nessecity so they said if a doctor did that they would approve it. Everyone please cross your fingers that it will be approved! I can't live like this anymore! This past 3 weeks have been pretty rough I have not been able to keep down any food at all FOR 3 WEEKS! I have just had a terrible headache from dehydration becuase of throwing up all day long and I never sleep anymore!!! AH! Last week I was on IV therapy from home for about 4 days to try and get fluids in me.. Unfortunitly I had to go into work while on an IV so that I didn't lose my job ....

I don't wanna have to walk around with an IV in and a huge bag on me all the time.. Please pray for an approval for me!!!

Reading me on paper

2009-08-03T13:24:00.000-07:00

I know that this blog has lately had more about what I am going threw with my kidneys failing more then my fibro but this post I think everyone that has Fibro can relate to.

Last Wednesday morning I woke up around 3 am feeling very very sick. I could not go back to sleep I was having anxiety I had a fever/chills and the shakes. I started vomiting and since then I have not stopped. I don't care who you are throwing up is always the WORST.. and I can't even tell you how many times I have done that in that past week. On Friday I went to the doctor and he sent me to the emergency room to have IV fluids for dehydration.... Dehydration came from not being able to keep food or liquid down for at that time 3 days.

The doctor walked into the room I was in and looked on my chart and the first thing out of his mouth is " Why are you on Methadone?" ... I take it for my fibromyalgia. Then the doctor said " Well it seems to me that your having withdrawls and thats why your sick." Okay first of all... no I am not having withdrawls I am taking the medication I have not stopped therfore its pretty hard to have withdrawls for something that you are still taking. Second, He did not even ask what was going on what I think may be causing this what the other reasons could be for this did not ask about my history on what has been going on the past 3 months with my kidneys failing. He simply read me on paper and saw that I am a 22 year old taking a pretty strong narcotic for something that in his OWN PERSONAL OPINION does not even exsist.

On Sunday morning around 5:30 I had finally given up on trying to get some sleep. ( I have gotten no more then 9 hours of sleep in the past week I don't know why I can not sleep but... I just can't) I finally went to do what every child ( well... I guess and me.. an adult) dreads having to do when they are sick. Wake up their parents in the middle of the night to tell them that you are sick.

I woke my mom up told her that I have still been throwing up I am so so nausiated and have a terrible pounding headache from the dehydration and pure exhaustion. We decided to go back to the emeregency room becuase the doctor on call is 35 minutes away and all he said to do was go to the ER...

So as we got their and the nurse took my vitals and blah blah blah she went out to get the doctor. We heard the nurse say to the doctor as she is rolling her eyes " This girl is on methadone for " Fibromyalgia" and she was just in here 2 days ago." All I had been getting in the ER was an IV fluid.... What is the big deal its not like I have been coming in for a shots of pain medication.. You think I am out seeking Iv bags...???

Once again, someone has read me on paper and made their opinion and diagnosis from that. They see that I am a 22 year old who has been in the er twice the past 3 days and they just assume that I am a drug seeker, that im crazy and its all in my head, or am a recovering adict. It is so hurtful to have people think that way about me and it is exhausting having to defend myself and plead for them to listening to me and listen to what I am saying about how I am feeling instead of just reading me on paper and judging me from that. It is even more hurtful for a doctor, nurse, whoever say something like " Fibromyalgia is just a catch all. Its not a disease and its not something you need to be medicated for." Or some option like that. It is so so hurtful.

Fibromyalgia is REAL... just because you can't see it does not mean that its not there and people are not being affected by it every single day of their lives. If I am not being medicated for fibromyalgia I would not be able to function in my life. I hate hearing people make opions like that about this disease or see people roll their eyes when I tell them that I suffer from this disease.

I believe that people with Fibromyalgia have to not only deal with this disease and try and live a normal life while suffering with this but they also have to work twice as hard as someone else with more common or a disease that people can physically see on you.. Because people like the doctor I saw in the ER or the nurse in the ER who make judgemental and cruel opinions like that we must defend ourself and everyone else with Fibro becuase IT IS REAL... IT IS REAL AND IT DOES AFFECT PEOPLE AND THEM TRYING TO LIVE A NORMAL LIFE..

If you ever have a doctor read you on paper instead of talking to you about what you ARE feeling and WHAT IS going on and WHAT IS AFFECTING YOU... stand up for your self and defend yourself becuase you know that it is real and until someone has felt the pain that this disease causes and how this slows you down, and affect you in ways that sometimes you cant even get out of bed ... people will never unerstand that until they have felt it. Don't ever let a doctor or anyone else make you feel like it is in your head or that you are just looking for pain medicine because they may think that its not real or read you on paper and make their diagnosis or opinion without even talking to you about what is going on...

This disease is real. Its hard. Its is extremely life altering and people who don't feel this pain everyday will never understand.... but you know that it is real. Stand up for yourself! Defend youself and everyone else who sufferes with this just like you do!! You know that it is there and real don't ever let someone make you think otherwise.

I am ashamed.

2009-07-20T06:55:00.000-07:00

I am so ashamed that I have not been updating more to this blog. When I started this blog I really wanted to do a post atleast twice a week and I have a failed miserably. I got an email from a new follower the other day and I was so excited that there is someone who has found this blog so it made me want to post.

I just wanted to make anyone who is currently taking Lyrica for their fibro about a new discount card that your doctor can give you to get a huge discount on your perscription. I know that Lyrica can be up to 400.00 dollars ( In my opinion it is so worth it) but that is a lot of money. So if you don't have insurance, or are not getting the medication for free from the manufacturer be sure to ask your doctor about the discount card that they now have for Lyrica.

Just to give an update on everything. My fibro has been okay as long as I take my Lyrica like I am suppose to. I worked a Graveyard shift for work one day last week and when I got home in the morning I went right to bed and forgot to take my Lyrica. I woke up feeling terrible becuase of it!! I can not say enough great things about this medication, my way of life has been totally different since I have been put on that medicine. If you have fibro and are not on it... ask your doctor about it right away!

Just to give an update on how I am doing with everything besides the Fibromyalgia.. if your just tuning in to my blog for the past few months I have experienced Renal Failure, Kidney failure, having to go pee threw a cathader everytime becuase my bladder does not work. I was suppose to have surgery in June to have a stent placed around the nerves in my bladder and kidneys to keep them functioning correctly and 2 days before the surgery my good for nothing insurance company called and said " Sorry we are not approving this surgery call back in 12 months and we will put it up for review then." So I never had the surgery ( hence the peeing threw a cathader everyday still) so I am in frustrating process of appealing their decision, and hoping each day that my body does not go into renal failure again until I can get this stent put in.

So thats were I am. I am frustrated, irritated, and emotionally and physically drained. Everytime I think about the phone call that I got on Friday night when my surgery was schedualed for that Monday from my insurance company saying those words NOT APPROVED my stomach churns and I just cry.

So.... until then if anyone has 40,000 dollars they could loan me... well not so much loan me as give me becuase I will never have that money to give back ... if they could give that to me for my surgery just in case it never gets approved... that would be appreciated. Thanks. =)

Mono

2009-06-16T06:44:00.000-07:00

I don't know what it is about Mono but it apparently loves me. Maybe its my blonde hair or my blue eyes... I dunno but it loves me =)

This is twice in the past 2 years that I have had Mono. Mono short for mononucleosis is usually caused by the Epstein-Barr virus (EBV), a very common virus that most kids are exposed to at some point while growing up. Infants and young kids infected with EBV usually have very mild symptoms or none at all. But teens and young adults who become infected often develop mono.

Symptoms of mono can often be mistaken for the flu or strep throat. Common symptoms of mono are:

headaches
sore muscles
larger-than-normal liver and spleen
skin rash
abdominal pain

Swollen Lymphnodes

Fatigue and weakness

fever

sore throat

Mono is no fun. When I had it last year it dragged on FOREVER. . I always so so tired I would do nothing but go to work get off at 3 and get in bed until I had to wake up the next morning to go to work. I have been battling a sore throat for a week now I can hardly talk I have no voice coughing so much my chest hurts and a 102 fever since last Thursday night. I would love nothing more then to go back to bed right now. If I do not keep myself busy at work I will just stand here and slowly close my eyes... until I catch myself doing that and I have to keep myself awake.

People think you can only get mono from kissing. Well. I have kissed no one. And I have it.

I didn't even get it the FUN way...

I am still alive.

2009-06-09T08:29:00.000-07:00

While going threw all of this Kidney Failure stuff I have not been the best at keeping up with this blog. I am goign to really try and post atleast once or twice a week. I hope that everyone enjoyed the post from my friend Rashell who also has Fibromyalgia. She is a great support system, and I can't tell you how nice it is to talk to someone who understands and really does " Know how you feel."

I don't know if its because my kidneys and bladder hurt so bad and also my stomach from growing so much from my bladder being full and not able to empty out that I have not been focusing on the Fibro but it has not been that bad the past few months. The warm summer weather helps alot. People think I am crazy when I say that I can tell there is a storm coming in because I can feel my body just aching from it. I swear I'm not crazy. =)

I was suppose to have surgery on Monday June 8th but my insurance would not approve it. It was a huge dissapoitment and upset to hear that it was not going to happen anymore. I am going threw the process of appealing it but ... its a long frustrating process. They told me to call back after I have had these symptoms for 12 months. Its not nessacary right now. . . I am not always the sharpest tool in the shed but I am pretty sure a functioning bladder and kidneys are pretty damn nessacary. The Surgery is 40,000 Dollars. Feel free to donate at anytime.=)

There is a new medication out that is made just for Fibromyalgia patients. I was given a sample book to take for 2 weeks. I didn't really notice any kind of difference but again my fibro has not been that bad the past months or so. I don't remember the name of the drug but I want to put it out there so that anyone who reads this that has Fibro can maybe get more information on it to see if it could possibly help them.

Thank you for everyones love and support threw all of this. I really appreciate it =) Keep the Flowers coming.. Those help hehe =)

Food is My Friend.... Right?!

2009-05-19T10:16:00.000-07:00

Hi my name is Rachelle Evans, about a year ago I was officially diagnosed with fibromyalgia. Holli and I were introduced through Holli's sister Meagen whom I work with at Doba. Over the past year Holli has really been a shoulder to cry on or in many other ways a leg to stand on. I can't imagine what going through fibro alone feels like. When you have Fibro it does feel like you are completely alone even if everyone around you has it, it is a rough internal enemy that is always learning and adapting on how to attack you next. I will go through a lot more of my battle later, as of right now I would rather touch on the challenge that is staring me in the face right now, food.
Over the last 4 months I went from being able to eat anything in the world, in very large amounts... To so terrified to take a bite that I am drinking alot of slimfast just to make sure I get nutrients. If you know me, the last can you expect to see in my hand is a dietary supplemental drink. The best parts about life is food, whenever their is a celebration, food is normally something that is hand in hand ready to feed ya!
I dont want to get into it too much about what happens to the food after I eat it but I want to explain the struggle between losing such a good friend in this on going fight..
When I was young I would always ask for food for Birthdays and Christmas, yes I got fed plenty as a child but the thought of owning my own jar of pickles, or having an entire loaf of French bread to myself just made me happier the some lame doll or something. Still to this day, my mother, grandparents and siblings expect to make a pan of brownies, cinnamon rolls or mom's famous chocolate chip cookies. I believe one year I even asked for a pot of homemade chicken soup. I am pretty pathetic I know, I am just trying to help you get the picture of how much food is apart of me. In elementary school I was once asked what I wanted to be when I grew up, I said "a bakers wife" NO LIE.. Anyways, I am really starting to drool thinking about all this so I want to head to what has torn me and my best friend (sorry Ryan, I am talking about food) apart..
Irritable Bowel Syndrome or IBS has now came into my life, when i first heard about such a thing I was horrified, I had sworn my life would be over if I ever had to restrict what I ate or had to only cook food that came out of a certain book. I really blocked out the idea that it could ever happen to me, even though I read article and article about how it is normal for IBS to come hand in hand with Fibro I would secretly thank God that he understood that I was way too weak to be able to handle that challenge and that he could throw the rest of this stuff at me all day long as long as I could eat normally.. But things were getting too good, I had really started to find the right combo of meds that worked for my fibro, the sun was shinning outside and I was not wishing I was in bed all day, so I was on top of the world. Then it started happening, this grueling rumble in my stomach, very low at first, went on for days at a time. Then it turned into a washing machine inside my gut, I started spending much more time in the bathroom just to make sure that if I need the toilet, it is there.. Slowly the bathroom started being my most visited room in the house, more so then the kitchen or some nights, spent more time there then my bed. :( Now, anyone who has Fibro knows how important sleep is. I dont care how many drugs I take for the day, nothing will make up for the feeling you get when you body is not willing to be up and awake. Now, I want to clarify a few things, I wasn't going to the bathroom that whole time, some nights it was just wishing you could, so you would sit there for hours.. I know this is a horrible topic to discuss with anyone besides your Doctor, but I just want to mention that I have lost one of my best friends, but after several months I have determined, it is not worth it, that friend didnt want me to be happy anymore, he wanted me to be miserable. I have kept a journal of what I eat and figure out what does well for me and what doesnt, sadly none of the foods I really want to eat are on my safe list. But just the little changes have helped like trying to only drink water, I had a glass of milk on Sunday and within an hour I was running to the bathroom, just to be greatly disappointed.. All the fun stuff like loaves of french bread and a plate of cookies are on the bad list. Lets hope that I am not going to lose my friend, just reinvent our relationship. I think since this article has literally been a "shitty" one I will write one soon that will make up for it. Thanks for letting me vent Holli, I think it is great what you are doing. Even if it just helps me out.. I am stoked ;)

Whats been going on

2009-04-12T23:35:00.000-07:00

If you read my last few posts on here about how I have not been able to go pee for a few weeks then you can read HERE on my other blog what has been going on. I was admitted to the hospital for Renal failure, Kidney failure, and dehydration.

This has all scared the hell out of me.

No pee Take 2!

2009-03-31T00:33:00.000-07:00

If anyone who loves Greys Anatomy like I do will know what I am talking about. Remember in the 3rd season when Georges dad is dying of cancer and after his surgery they are worried about kidney failure. So when they see that he has a bag full of pee from his cathadar they get all excited because his kidneys are working.

Well right now thats my life. But without the pee!

On Friday afternoon I went to the doctor because I had not gone pee since last Tuesday.

They emptied me out.

Well went back today because I hadn't gone pee since then. They did another ultra sound and said that my bladder was about 3 times fuller then it was on Friday. I am being sent to a Urologist to have them do a scope of my bladder to see whats causing it so I can't pee.

I know this is really what everyone wanted to read today. All about how I can't pee but I don't really have any news to update on my Fibro. My doctor said that there is a chance that this may be caused by one of the medications that I am on. If it is any that helps me not be in so much pain. Trust me. I will take not peeing before being in pain.. ugh. Wish me luck. Pray for some pee people! And nothing in my bladder that will cause surgery!

Yes in that picture I am about to have a cathader put in me and my mom wants to take pictures. Yeah.. thats really a kodak moment I wanted to remember!

Oh how nice it used to be to pee

2009-03-29T23:54:00.001-07:00

I have not gone pee since Last Tuesday. Well... thats if you count the last time I went on my own. Friday I got to have a cathader put me to drain my bladder. That was SO how I wanted to spend my Friday night. I dont know why I can't go but obviously not peeing for 6 days straight cant be a good thing though right? They said that if I don't go by Monday morning then I need to go back in and possibly be admitted into the hospital. They have to test for Renal Failure and Kidney failure... Neither of those things sound to good. I dont ask for much. Just to pee. Thats all．．．．　 PEE!

Life of the DENIED and UNINSURED

2009-03-24T06:24:00.000-07:00

Did you know that there is 46 million people in the United States that are uninsured? Utah ranks 34Th in the nation with 14% of the states population do not have any health insurance.

(And yes I googled that information. Come on now.. I'm not THAT intelligent.)

I am one of the 46 million that do not have health insurance.

When I lost health insurance when I was 17 years old. Luckily I had it when I first got sick and was covered with amazing insurance while going threw all of that. But when I lost it I realized how important it is to have it. I heard about this company called CHIPS. CHIPS is for kids who are under 18 years old and in school. Or you can also be covered if you are enrolled in school. Well my thought process is if I could afford to go to college I probably could afford insurance. Well when I was 17 I applied to be covered on CHIPS and I was approved on the condition that when I graduated high school or turned 18 first I would no longer be covered. My High School Graduation was on my 18Th Birthday. With my 22Nd Birthday right around the corner I am still with out insurance.

Since then I have had 3 surgeries and 4 hospital stays. Every time they assigned me a social worker to help with getting financial aid. I received one bill for $3,700 dollars. Everything was written out very detailed so I knew exactly what I was being charged for. ( Keep in mind then added up to be $3,700 dollars.)

Iv Bag ( that is literally just sugar water) : $27.00 dollars

Pain Pill every 4 hours: $17.00 dollars

Demoral injection: $120.00 dollars

New Iv Bag: $27.00 dollars

You get the idea...

And at the bottom of the bill right before the GRAND TOTAL it says

Financial Aid: - $15.00

Yes that's right. On a bill that large they were nice enough to give me 15 dollars off of my bill. Applying for the financial aid, getting copies of pay check stubs, verifying employment all of that trouble for 15 dollars.

I can truly say that their has been times while in the hospital or dealing with surgeons that I have definitely been treated differently because of having no insurance. Waiting until the last minute when they can no longer wait or put of doing surgery. Refusing to see me in an office visit because of not being able to pay a 175.00 dollar Co Pay. I was once even told that I needed to wait in the hall of the emergency room because I would be last to help. ( True Story)

I feel bad for anyone like me who does not have health insurance, and I think that the people who do don't know how lucky they are. I don't think that anyone my age should be into their eye balls of debt and ready to file for bankruptcy because of not having health insurance.

Luckily there is programs like the CONNECTION TO CARE and doctors like mine who fight to help their patients get the care that they need. If I could have one thing in the world it would Health Care Coverage. I won't go into the details but I have tried for years to get it from my work. Denied. I have done research myself finding company's that I could be covered independently and on every single application there is a section that lists numerous diseases, conditions, family history medical information and asks you to check the boxes that apply to you.

The first one lists:

FIBROMYALGIA

I must check that box.

DENIED

I tried to cheat and not check in one time but once they got my medical history and its in my chart I got a letter pretty much saying.. Sorry and Good luck with that!

Gee Thanks. That was almost as helpful as the $15.00 Dollars!!

CAN I PLEASE JUST HAVE SOME INSURANCE?!

Connection To Care

2009-03-16T10:53:00.000-07:00

In November or 08 I had applied for a company called Connection to Care. It works with the pharmaceutical company called PFIZER. As I had mentioned in my previous post about LYRICA it is $400.00 a month. Not gonna happen for me. So my doctor had given me all the information to apply for this. I had to fill out the application, get my doctor to sign it, get a prescription from my doctor for the medicine and also include tax return information and check stubs. I got a letter back from them about a month ago saying that they had to have this years tax information. Bummer. So I went through the entire process again. Application, doctor, stubs, everything. Then about 3 weeks later... I got home on Friday after work and I had a mysterious package on our kitchen table... It had my name on it and I could tell that it was a bottle of pills.. I didn't remember buying any illegal pills online.. I'm pretty sure I would remember doing that. I opened it and it was a bottle of LYRICA.. I ran to the mail box to see if they had sent me a letter of approval.. ( I was pretty sure they had to approve me they wouldn't send me a bottle of pills to say sorry your denied but have some drugs!) I got my letter that said I was APPROVED!! I have never had that word said to me or written to me in my entire life! Yay! I have been approved for a year and they will send me a new bottle of 200 pills every month and when I need a refill my doctor or myself will just call them up and they will mail it to me! AWESOME!!... I am so happy!! No more hoping that my doctor has samples to give to me and no more feeling like crap if they don't! YaY! After a year I will need to apply again but I am not even thinking about that now I am just so glad I have it for a year! I can not thank my doctor enough for telling me about this and helping me get on it! I called him when I read the letter to tell him! I just wanted to share my excitement about being APPROVED!!!... Ooh I love that word =)

LYRICA

2009-03-08T08:13:00.000-07:00

*I know this blog sounds like a pity party table of 1 blog but I really have a purpose for it. But this is not only for me. Not only is this blog to give myself an outlet but its also to hopefully reach out to other Fibro Fighters to help each other. Here is something that I am hoping to get out to them.*

Had I started this blog around a year ago it would not be a pleasant thing to read if you know what I mean. I had a completely different outlook on life and to be honest a completely different person. In November of 08 I had had enough. I couldn't take the pain and suffering anymore. I couldn't live my life like I was. It was to the point of not being able to go to work.. laying in bed all day long in tears because I couldn't move. It took all I had to get out of bed. I was miserable and living like that is bound to make any person depressed, and depressed I was. I couldn't keep living my life on only being able to function if I take pain pills all day. That is not the life I want, but that is the only way I could function. My Fibro had got out of control and I had to do something. I finally went to see my doctor ( who by the way deserves a post of his own to talk about how AMAZING he is, and how he is literally.. my HERO.) My doctor is so amazing. He has this way of making me feel like the moment he walks in the door I can just relax.. and just breath because I know that everything is going to be okay. After laying on the bed crying for 20 minutes and telling him that I can't live like that anymore he asked me if I had ever heard of LYRICA. He gave me some samples to try out and if I think it made a difference and I felt better then I would continue to be on it. Within hours of taking the first pill I felt 90% better. Now, some of the side effects people may not like... I am not someone who feels the effects of new drugs but I did feel these ones. If you read online some of the side effects are dizziness, dry mouth, and quote on quote from the website it " Feeling high.".. and yes I did feel that for about a week. Trying not to sound to dramatic.. this medicine has really changed my day to day life. IT has helped so much. I sleep better, I don't ache as much in the mornings and threw out the day... it just has been amazing it has helped SO much. I use to have to take 2 or 3 pain pills a day just to function and since I have been on this I have been able to cut down to 1 a day. There are days still that I have to take 2 but I can't even believe how much LYRICA has helped me. I was also put on Zoloft and the 2 together help so much. I take 300 mlg of the Lyrica and 50mg of the Zoloft and when I need it 10mlg of the Methadone. I have felt so much better since I have started taking Lyrica and I can't even imagine having to go off of it and feel like I did before having it. I would recommend this medicine to anyone with Fibro. Just click right HERE for the website and click right HERE for the side effects and more info. Again, Lyrica has just been amazing and has helped me so much! One bad thing is is that it is very expensive.. I have been lucky enough to have my doctor give me samples of it, and also he is helping me go threw the process of applying to get it for free from the manufacture. Cross your fingers that I get approved! If you have Fibro and have not tried this medicine I would recommed asking your doctor about it!

Here we go..

2009-03-08T07:59:00.000-07:00

Here we go.. The first day of the journeling of my fibro. Today. I feel okay. One thing I remember about my 27 surgeries and my weeks and weeks of being in the hospital is about 3 times a day a nurse or a doctor will ask you " On a scale from 1 to 10 how bad is it?" Or when your in the Pediatrics ward of the hospital because your not 18 yet you get a scale from a really really happy face or a very sad and crying frowny face. How bad is it... Every day I ask my self when I wake up " On a scare from 1 to 10 how bad is it?" When I go to bed at night I ask my self the same question. Today I am about a 4. I am very tired. Today is Day Light Savings so I lost an hour of sleep. So, I am tired but my pain is not that bad. All that I have done today is wake up at 5:25am, get ready for work, and by 7:00am be at work. Now its only 9:00am it feels like it should be around 1:00pm but its not. Ugh. After standing at the desk on my feet for 8 hours my pain scale will be around a 7. I will do another post tonight and journal what all I did today and see how I felt after. The purpose of this blog is so that I can see what I did each day and see what made me feel better... and what made me feel worse. Obviously standing at a desk on my feet for 8 hours does not make my pain go to the really really happy face on the scale but after doing this every Mon-Fri 7-3 for the past 5 years... I am getting use to it.

MY FIBRO FIGHT

2009-02-19T08:59:00.000-08:00

Fibromyalgia causes you to hurt all over. Fibromyalgia pain can come from painful trigger points, aching muscles, chronic headaches, or neck and back pain. It also can cause fatigue, anxiety, and depression that affect your sleep, your career, or your ability to lead an active life.

Fibromyalgia, (also known as fibrositis, fibromyositis, and muscular rheumatism), is a chronic syndrome that causes pain and stiffness throughout the tissues that support and move the bones and joints. Muscle pain, tender points, and fatigue are the predominant symptoms associated with fibromyalgia.

Fibromyalgia may occur alone or in conjunction with rheumatic disorders such as arthritis, osteoarthritis, or lupus.

I bet there is a million different definitions of Fibromyalgia. You read, hear, and are told the symptoms of Fibro, and what it is. What you don't read hear or are told is how it really feels. No one tells you that when you wake up in the mornings you feel like you have had the crap beat out of you by a bucking bronco. You are not told that every nerve in your body feels like its on fire and is spasming. You never hear about the achy bones and muscle all over your body that you have every single day. You are not told that some days you hurt so bad its all you can do to get out of bed and shower. Want to hear my definition of Fibromyalgia? When you wake up in the morning you feel like maybe you have been laying squished up in a box for 10 years and when you finally get out you have to stretch your arms and legs out so slowly because your afraid that if you do it to fast they might snap because they are so stiff. Remember a time in your life when you were so sick with the flu or a cold or something and how achy you feel all over your body. Times that by 20. You either can't sleep at all because of insomnia, you hurt to bad to get into a comfortable position, or you can't stay awake because you are so tired you can barley keep your eyes open during the day. I describe Fibro is the worlds longest and worst Charlie Horse ever. Except its just not in your calf. Its your entire body. You hear people say " good days, and bad days" People with Fibro never have that. Its either I hurt EVERYWHERE today or I only hurt in a few places today. I can sum up Fibro in only 3 words : It Freaking Sucks.

I think that people with Fibro are very misunderstood. People don't get it. When I first got sick I was 15. I woke up one day, got out of bed, and fell to the floor. I was dizzy, my eyes were blurry, my neck hurt so bad, and my hands were numb. Long story short after every test ran and every surgery done we found out I had been sick with Spinal Meninigits.

Meningitis is a medical condition caused by inflammation of the protective membranes covering the brain and spinal cord, known collectively as the meninges.[1] The inflammation is caused by infection with viruses, bacteria, or other microorganisms, and less commonly by certain drugs or diseases.[2] Meningitis is potentially life threatening due to the inflammation's proximity to the brain and spinal cord; it is therefore a medical emergency.[

The most common symptoms of meningitis are headache and neck stiffness associated with fever, confusion or altered consciousness, and an inability to tolerate light (photophobia) or loud noises (phonophobia). Sometimes, especially in small children, only nonspecific symptoms may be present, such as irritability and drowsiness. If a rash is present, it may indicate a particular cause of meningitis; for instance, meningitis caused by meningococcal bacteria may be accompanied by a characteristic rash.[1][3]

I had gotten menigitis from having a Nerve Block put in my neck during a surgery on my shoulder. Apparently the Nerve Block was done wrong, and that was what caused the menigitis.

After having found that I still continued to be sick, and in and out of the hospital. I lost a lot of friends becuase they got sick of being around a sick person all the time. They didn't understand that one day I am okay, and the next I can't get out of bed. It took around 3 years of being in and out of the hospital, being taken out of school and put on the Home and Hospital program, having every test done to me and being put in every medical machine known to man , having 27 surgeries before the age of 18 and over 100 IV's. I was told that I would being going threw another round of tests and procedures to figure out whats wrong before they would send me to a MAYO clinic. I went to the U of U for a few days and that is where I was diagnosed with Fibro. For a very long time I thought it was just a catchall for everything. I was very upset and felt like I was given up on. I then did more research on it and every symptom that I read was right on the dot to what I have. As much as people think that Fibro is all in someones head, I know that Fibro is real. There is not a lot of outlets that people with Fibro can go to so the point of this blog is just that. Also, for me to keep somewhat of a Journal each day to record how I felt, What I did that made me feel better or worse. New medicine that I have tried that helped or did not help. I would love for people to comment and give me their stories to post. Fibro is real, and it is hard but there is nothing you can do but go day by day and fight the fibro fight. So here is my story, my journal of my day by day life with Firbomyalgia.