Hey everyone!

Hi everyone! I have been having a really hard time with my fibromyalgia lately and  I have started at a fibro clinic in Roseville, CA.... If you would like to read my updates and posts on it please visit my other blog HERE !! Thanks everyone remember there is hope and you are not alone in your fibro fight!

Human Thermometer

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

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

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

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.

So

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

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.

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. =)