Lyme Disease Kills

It has come to my attention recently that a lot of Lyme Disease sufferers have been passing away recently.

I remember when I was first diagnosed with Lyme in 2008 the first thing I did was google if Lyme disease could kill. To my relief the results all came out the same, that you couldn't. Knowing what I know today I know that is very far from the truth. Check out this website to get an idea for yourselves:  http://www.angelfire.com/planet/lymedisease/Lyme/Memorial.html take a minute and scroll through all the pages of those who have died from Lyme disease and take a look at the ages, it's scary.

What's even more scarier is that these deaths, some of the time, are indirectly caused by Lyme, such as lack of proper medication, but a huge factor in Lyme deaths is depression.

It's hard for tho who aren't sick to imagine what anyone with a chronic disease is going through, no matter how hard you try. It reminds me of mortuary college; we were always taught never to say "I know how you feel" because there is no possible way for anyone to completely understand the pain any person is going through in that moment, no matter how closely related your experiences are. Those of us who suffer from Lyme disease have a huge range of emotion we experience each and every day. The one I'm most guilty of is why put the people I love through this, and why put my boyfriend or friends through this junk when they could probably have a better quality of life knowing they don't have to take care of me. In the same respect as they can't know possibly how I feel, I can't possibly understand that these people love me and would do anything for me, it's a catch 22... I guess. 

Luckily I have that in my life; I have friends who have been there for me through everything I have gone through and will always be there to back me up and help me, no matter how down or how sick I am. I am lucky to have my family who supports me and are able to help me with my treatments, both financially and physically. There are so many people out there who have family and friends who turn against, or disassociate with them because they can not comprehend or even wish to understand what that person is going through with Lyme disease. So many people lose their family, so many people lose their friends, just because they don't want to open up and they don't want to try and sympathize and understand the consequences of Lyme disease.

When your family and loved ones have turned their back on you, where else would you turn?? Suicide seems to be the most popular answer. And not just because no one understands them; there's so much more too it with Lyme than that.

When the people you love don't understand you and don't support you, you will have problems with doctors believing everything you're going through. I has one doctor tell me that if my mom hadn't been in the room with me, he would have believed I was making everything up. There's so my with Lyme disease and so back and forth with all the possible symptoms, to uneducated, non-Lyme friendly doctors it seems unreal. When you can't get the support from family or from a doctor, you can't get properly treated.

Support isn't the only reason Lyme sufferers turn towards suicide, the symptoms can be very unbearable. I have talked to a lot of people who have both Lyme and have gone through chemotherapy, majority of them have said to me Lyme is worse. I've been told they both feel very similar to each other except Lyme never ends. I will admit that I, myself, have had days with symptoms so bad that I understand those commit suicide because of it... It's a never ending cycle, when you feel good, you fall back down again and that is the worst feeling in the world. I would never consider suicide, I have family and friends who will support me through all of it, and I am lucky enough to have finances available to see one of the top Lyme doctors in the nation. I've also never been on to give up. But I can truly see why so many have, and no one could possibly understand that until they have lived a day with Lyme.

The Lyme suicides could possibly be cut down in numbers if we just told someone we loved them. Not tell them their treatment is wrong, they aren't in as much pain as someone else or there's always someone else worse out there, but just that you love them. (More on the weird competition that seems to go on with Lyme patients in another blog entry.) if you know anyone with Lyme, just tell them you love them and you care about them. Also, don't be thrown off if they seem okay, Lyme patients are really good at faking "feeling good". It's our hidden talent.

Please share this and tell at least one Lyme you love them today; it'll make their day, and maybe prevent another Lyme death.

(There is so much I didn't cover reasons why Lyme suicide is a thing.... There are so many reasons things can go wrong with a Lymie.)

Why I'm Thankful For Lyme Disease

At the beginning of this month I started doing the "thankful a day" thing on facebook, but for someone like me (who has a limited memory) it was hard to keep up with it.  Therefore I've had a lot of time to reflect on the last year and think of what I am thankful for the most, and prepare for my Thanksgiving Day post.  Honestly what I kept coming back to wasn't what I'd expect to be thankful for at all; Lyme Disease itself.

This past year has been a whirlwind of events, all related to my Lyme, and these events used to make me feel so super unlucky, but I've realized I wouldn't be the person I am today without all that's happened.

I'm thankful for Lyme Disease because it's made me see life in a positive perspective.  Before this last year, I was a very negative person.  Don't get me wrong, I know the reason I am negative is because of my neurological Lyme Disease, but this past year, I've learned to see the silver lining in all of it.  I've had Lyme & co-infections for 16 years now, and I got it at such a young age I honestly don't know what a "normal" feels like.  My childhood, teenage years, and adulthood "normal" was extremely negative.  I still have my negative bouts, there's no doubt about that, but Lyme has taught me and shown me that I'll be more happier if I try to pick out the positive of everything rather than the negative.  Instead of "I feel so awful" I now see it as "I feel bad, but I've had worse days, this is an improvement."  Like I said, I haven't completely dumped my negative feelings, they are still there, but when I'm starting to feel super negative and down, I do try and force myself to see the better.

I'm thankful for Lyme Disease for showing me the true side of people.  Everyone has gone through it, not just with Lyme Disease but with other invisible diseases, we've all lost friends and family who we thought would never leave us in this life.  The reality is that people don't understand, and sometimes are too ignorant, to see the true suffering and accept us for who we are and respect us for the suffering we go through.  I have lost some best friends who believe I'm "over dramatic" or it's simply not as awful as I make it seem.  Or even, that I'm making it all up.  I used to dwell on those, I used to try and make these people understand that what I'm going through is real, but I've learned that they are not worth my waste of energy, time and emotions.  You can't force people to care.  This also goes for worldwide Lyme awareness... I used to get so mad and so upset over these articles people post saying "Lyme isn't real."  I'd get so angry.  Yet again, you can't educate the ignorant and unwilling to learn, therefore they aren't the waste of emotion.  In the past year I've learned to ignore those articles, and ignore the stupid comments people make in relation to that.  I've learned that it's just not worth it.

I'm thankful for Lyme Disease because it's given me a chance to educate and support people.  I've always been a very compassionate, empathetic person and since leaving my job as a funeral director I've been aching to show my passion.  In the past year I've started a support group to try and help others like me, and I've always been able to open my wings and teach those who don't know anything about Lyme.  I've done several awareness events for those anxious to learn, and I'm very grateful that I've been able to have the opportunity to do so.

I'm thankful for Lyme Disease because I've made some amazing friends I wouldn't have known otherwise.  There are a couple people I've met in the last year that I consider family; these people I have so much in common with and are some of my best friends (my little sister and twinsy!).  If it hadn't had been for Lyme, I wouldn't have even known these people existed, which would have been awful because they have improved my life so much.

I'm thankful for Lyme Disease because I've learned to appreciate those around me.  I have had the same group of best friends since middle school, and luckily when I got extremely sick last year they turned around and showed me more support than I could even imagine.  I've always been one to appreciate my friends and family, but I've gained so much more love and respect for them that I didn't know I could, just because of their support.  It takes a lot for someone to be around when you're attached to an IV pole and act and treat you like everything is already, and I appreciate it so much.  My friends have become my savior in the last year, they are capable of holding me up when I was down.

 There are other things and people are I am thankful for that didn't come about because of Lyme, but are closely related to Lyme.  

First off my parents.  If it wasn't for them I would have been homeless this last year.  They have let me come back and live with them in the past year of extreme sickness.  I'm especially thankful to my mom.  Every. Single. Day. I did an IV, she'd spend the night before drawing on my IV bags just to make me smile.  She has taken me and has been to every single doctors appointment with me, has supported me so much, and has tended to me on my worse days, hand over foot.  She is doing everything she can to help me get back on my feet to restart my life.

I'm thankful for my brother, of course.  Without him I wouldn't have gotten the Lyme treatment I needed last year due to financial issues.  My brother supports me medically, has attended most of my doctors appointments in San Francisco and asks the doctor the difficult questions that I don't even think of.  Not only does he support me medically, he does what he can to try and make me feel like my life isn't wasting away.  He brought me to PAX Prime last year, which was amazing, and he's pushed me to have a lot of fun.

I'm thankful for my friends, my Lymie friends, my best friends, all of them.  They do so much for me.  Josie has been to every single support group meeting I've had, every single awareness event that she's been able to attend when work doesn't interrupt, and she's stepped up to basically be my nurse on cross country traveling trips.  She is always there for me, she is amazing.  Saby is my twinsy that I met because we both have Lyme Disease.  She's my go to person with the most bizarre Lyme questions, relationship advice, and just cat related stuff.  Since we've started talking, there has not been a day that we don't text back and forth.  Allison is my Lymie little sister, the little sister I never had.  She gives me hope.  Through everything she is gone through she is still capable to smile, to have a good time, and be positive.  I don't think I've ever seen her without a smile on her face, even when she's tired.  Her intelligence is so phenomenal, and her personality is so great.  Being around her, even when I feel awful, is so much fun and so full of laughs.  Allison's mom too, Kathryn, is equally as amazing as her daughter, she's a huge supporter and is Lyme fighter herself.  She fits in perfectly with our family, both her and Allison do!

To all of you I love you so much.  Thank you for being in my life, putting up with my sickness and growing and changing with me through the last year.  I couldn't have done it without you, each and every one of you, at all.  Thank you so much for saving my life.

Doubts

I've always tried so hard to write how my mind works, but it's hard.  I always find myself filtering out what I say and how I say it because I'm afraid it won't make sense, I'm afraid people will read it the wrong way.  Lyme affects the brain differently, patients with Lyme perceive things differently, worry more, feel anxious, destroyed, but this is how we think.  It's hard for those with normal brains (honestly I've had Lyme for so long I don't know what "normal" feels like, but from other Lyme patients, the brain functionality is completely different) to understand what we are thinking and how we feel.  I think the purpose of this post is to help me translate the feelings I have and why I have them into terms that can be understood (hopefully).  Also to help me work through some of the more dominate thoughts that I have.

After having Lyme & co-infections for 17 years I still have my moments where I question myself.  Even after this ever so intense last year constantly running through daily antibiotic IVs, it's just automatically conditioned in my head, because of all those doctors or nay-sayers, that maybe it's not real.

There have been several times when I have turned to my mom and asked her if she was sure I wasn't faking.  It's not that I really think I am, I know 100% that I'm not, but I've had so many doctors tell me there is nothing wrong, or that I'm making it up that there's still that fear in the back of my mind that maybe I am.   What's even worse is that I constantly feel ignored and alone. Sadly, there's a very select few in my family who actually take the time out of their lives to simply ask how I'm doing, I think the reason being is because they think I'm just striving for their attention. I don't want the attention in a bad way, the only thing I really care about is for people that I've cared about to return the favor and show that they care about me.

Honestly though, I don't think I blame them too much.  There is a member of our family who has lied and grasped for attention since being very young.  This member of the family has even told the family they were terminally ill. Everyone fell over backwards, including us, and spent time and money to make this person's last months alive fantastic.  It was later told to us by this person's father (because of a post I made in regards to some completely different person faking an illness to get attention and how it sickened me) that it was all a lie, another ploy for attention.  The family has been fooled once already, so maybe they are just wary to care about someone else.  Luckily my situation right now isn't deadly (I do believe back in 2012 if I hadn't gotten help when I did it would have been).  Maybe my condition isn't serious enough for them to care?  I honestly don't know.  I'm smart enough to move past that now, because where they lack in their compassion and love for me, I've gained from my friends and family I do have.  I do consider my friends to be part of my family more than most of my family.

What all this boils down to is doubt.  Like I said before, there's no question that I'm sick, but no matter what, because of lack of compassion and caring from (whom I thought) were key figures in my life, I will always doubt myself.  Typically the doubt is "maybe it's not that bad as I'm making it".  Honestly though, I know that statement is probably one of the most ridiculous things in the world.  It is as bad as it seems, there is nothing that I can physically or mentally do to make everything okay with me, or even slightly better.  I work so hard to maintain the disposition and personality that I have, and that is very hard work.

I think some of the times I see people who are obviously much worse off than me and it makes me feel guilty that I'm doing better than them while at the same time feel as bad as I do.  For instance, a fellow Lyme survivor, my age (27), who was feeling pretty good, had a seizure at an awareness walk and is now has been completely paralyzed from the neck down for the last 6 months.  I hate that she is going through this, but she's strong and I know she will get out of it, but it makes me feel so guilty.

It's honestly very indescribable, I can't think of the proper words I want to use, or even how to describe the feelings I have associated with my doubt.

I truly believe that in order to feel better (rather magnificently or even just a little bit) you have to be positive.  Where does positive reinforcements come from?  Family and friends who believe in you and give you confidence that they are beside you in your time of need.  This confidence will help regulate and remove the doubt in your mind about your illnesses, not just speaking about Lyme here, but any illnesses. I learned recently that the family and friends who actually doubt you (or even lack simple concern) are not worth keeping around.  As my parents have told me, there is nothing that we can do to make someone care about you.  Either they support you 100% or not at all, when fighting an illness it's all black and white, there's not room for grey.

Sadly, also in the same respect, you can't educate someone that doesn't want to be educated.  Lyme Disease is very controversial, there are those out there who can watch us suffer, watch us lose our ability to walk or speak, and still say it's not even a real disease.  You can't educate those unwilling to learn.  You can always try, but you have to be able to recognize when it is a lost cause.  Being sick, we have way too much on our plate to worry about other people who don't care, as harsh as that sounds.  But we don't.

In conclusion, I know there are others out there like who have the same feelings, who have been told and treated like what they are going through aren't important.  I know that this make you doubt yourself, but you have to understand that these people who don't take the time of day out for you are not worth your time and effort.  Instead of focusing on them and trying to make them care for you, focus on the people who already do care for you.  Those who are there for you no matter what, who constantly check in on you, who are there when you need to talk, or just simply there to hold your hand when you need it.  These are the people who matter most.

Do take this lesson from me: Chronically ill people do not need to suffer with unnecessary pain or heartache.  Eliminate those who cause it, no matter how hard that might be, but in the long run you will be a happier person.

Doctor's Appointment Updates

I haven't updated about my medical situation in a while, I guess I've been very afraid of jinxing it, as silly as that sounds.

I have been off of IV antibiotics since August, believe it or not.  My body was no longer processing the antibiotics correctly and had also built an insane resistance to them.  As soon as Dr. G took me off of them, I started to feel much better very quickly.  It was great!  I got the energy to actually sew things, I traveled to Seattle and attended PAX prime with my brother, his fiancee and my friend Josie.  That trip was very difficult and I was in a bunch of pain but it was worth it.

In October I had my appointment in San Francisco with Dr. H.  He said that there was a sparkle in my eyes that he has never seen before.  Do you know what was cool?  On my symptom check list sheet, I was able to check that I had improved in basically EVERYTHING.  I almost took a picture of my symptom check list I was so happy with it, but then, ya know, there's things on there that I don't want the general public to see.  That appointment Dr. H told me that I could take my PICC out in 6 weeks.  I started an amylose free diet to help with a build up of neurotoxins; recent blood tests have shown that my neurotoxins are tripled the amount of 'normal'.  He also recommended that we did a ERMI Mold Test at home because I had some abnormally high mold factors in my blood work as well.  Luckily, our mold test actually came back with less mold than average house holds.  The bad thing is that that means that I am overly sensitives to molds.

Shortly after the appointment, the skin around my PICC line started to blister, tear, and become very weak.  It got very bad very quickly and I ended up having to get my PICC pulled before Halloween which was AMAZING because I got to go to Scarowinds (roller coasters and haunted houses) that I typically go to every year but had to miss last year, and was pretty positive I was going to miss this year.  My PICC, as of current, has been out for three weeks.  It's awesome showering like a normal person, I love it.  Unfortunately though, the insertion site has yet to heal, it looks the exact same as it did the day that I had it removed.  It's gross.  And embarrassing.  I hate it.

Today I had my phone appointment with Dr. G.  So far so good, sort of.  He feels I'm still doing good without the IV antibiotics, but he feels that it's coming back very slowly, so we are going to start hitting it again.  "It's" coming back means that babesia, not so much the Lyme, is showing back up.  He determined that when because my body is weak it's not producing antibodies STILL, and also that my body can only tolerate antibiotics in very short bursts of time.  I am starting with two new oral antibiotics, and stopping Minocycline since I've been on it forever.  I'm also being put on a blood thinner (does Lymie out there have experience with being on blood thinners?  I've never been, so this is my first time.)  Also a whole bunch of supplements.  So far no new PICC line, which is great.

I was pretty sure I was going to have to get a line put back in, so I'm really relieved that I don't have to.  This isn't that big of a win either, but instead of an appointment every 4 weeks, he's moved it to every 6 weeks!  YAY!

No Amylose Taco Casserole

There seems to be a back and forth on what you can have with a no amylose diet, but I've been following Dr. Shoemaker's diet, and this recipe follows that diet.  Amylose free diets are good for Lymies, also good for those struggling with neuro-toxins and insulin resistance (both me!)  I make this whenever I am craving Taco Bell or something similar.  I could not find any taco seasoning at the store that does not have added sugar or starches so I made my own, which is also included in this recipe.

Taco Seasoning
    Ingredients

• 1 tablespoon chili pepper
• 1/4 teaspoon garlic powder
• 1/4 teaspoon onion powder
• 1/4 teaspoon dried oregano
• 1/2 teaspoon paprika
• 1 1/2 teaspoon ground cumin
• 1 teaspoon salt
• 1 teaspoon pepper

    Directions

In a mixing bowl, mix together all ingredients and store in an airtight container until ready to use.

Taco Casserole (serves 4)
    Ingredients

• 1 package of ground beef (the more lean the better)
• 1 can of mild chili beans (I could only find one without added sugar, it was store brand)
• 1 can of refried beans 
• 1 pack or 2 tablespoons of taco seasoning
• 1 tablespoon of verde taco sauce
• 1 jar of salsa
• lettuce
• tomato
• onions
• sour cream
• cheddar cheese
• queso cheese
• 3/4 cup of water
• Corn tortillas (optional - some amylose diets allow, some do not.  I avoid corn products).

    Directions

Preheat oven to 350 degrees.  In a skillet, cook ground beef on medium until brown.  Add a teaspoon of water and drain water and fat.  (The extra teaspoon of water actually draws more of the fat away from the beef.)  Add 3/4 cup of water and taco seasoning, stir in, let simmer until thickens.

Open can of chili beans and drain as much as possible.  In a medium bowl add cooked beef, verde taco sauce, chili beans, half jar of salsa and half a can of refried beans.  Mix until well blended.

In a casserole dish spread a small layer of the beef mix, top with crumbled corn tortillas.  Add a layer of refried beans, then beef mix, and refried beans again.  Top with desired amount of cheddar cheese and queso cheese.  Place in the over at 350 degrees for 7 minutes, or until cheese has melted.

Top with lettuce, tomato, onions, sour cream, and other desired toppings and serve!

Lost

For the first time in my Lyme fight I feel like I'm losing. The last two weeks have been worse than ever. 

Two weeks ago my blood work came back with liver function problems. The last week... I don't know what exactly is going on but it's not good. I've been in a constant sleepy state... I don't remember much of the day it mostly seems like dreams to me. I have problems falling asleep, but when I do, I can't wake up.  One night moms pump was going off and I wanted to get up to check on her. I was conscious of her pump, and knew I needed to check, but I could not gets self to wake up. Trying to sit up in bed, I'd instantly fall down back to sleep. I've tried standing up too, that ends with me falling back in bed. It's like I'm trapped in sleep and I can't escape it no matter how hard I try. It's been scary.

Along with the sleep I've been having devastatingly horrific nightmares. I've had vivid, violent ones before, but nothing like this. My therapist says its my body trying to tell me something. My therapist also says that my soul/my spirit is dwindling, and is dying. I told him how I really enjoy sewing but when I get ready to do it, I don't want to. He says its my spirit and self giving up.

This is the first time I've ever felt like I'm losing, like I have no strength. And for the first time ever, I am very very scared. My mind is messing up, I thought for a fact something had happened when it never did.

I have this absolutely dreadful feeling that if I don't take a break from medications something bad is going to happen.

I don't want to be weak, I want to keep fighting, I don't want to give up, but right now I feel I have to.

Monday I contacted my LLMD because of these symptoms getting out of control. They told me to stop all medications until my phone appointment with my doctor tomorrow at one. I'm prepared to ask for a break from the meds. I feel if I continue them at this point it's going to get much worse instead of actually helping. I have a lot of stuff coming up, the Lymie BBQ, Saby coming into town, going to PAX with Josie and getting to see Tommy, and I don't want to miss any of this stuff, or be too worn out to do anything. I can't miss any of this stuff, I won't let myself.

I really don't like this feeling because I feel very much like I've lost. I feel like I'm failing myself and my family because I've lost my strength. I feel so drained, exhausted, sad, and useless. I don't wanna give up.

Car Magnets!!

You know you want one of these rad car magnets.... sturdy high quality vinyl.  $6.00  Check them out here at my etsy shop!  

Alright everyone, ALL US STATES ARE NOW AVAILABLE to buy in bulk of $10.  Use the extra ones to give away to friends, or to sell as a fund raiser for yourself.  If you have support groups, take them to your support groups!  Help spread awareness for Lyme Disease in ALL states!! (Individual magnets are coming very soon.)  Click Here to Look at Them!  And Please Share!

I'm working on adding more things to the shop, including individual state car bumper stickers.  I'm trying to raise money for myself to help pay for the treatments.  These magnets are great for awareness and they stick on the car really well.  I've had one on this car since December, and they've never fallen off (okay once during a REALLY aggressive car wash.)  The one I've had since December hasn't even faded at all either!  Anyways, please share, help me raise some money and get this awesome magnet in return!  Thanks!

What You Don't Know About Tommy Refenes

It's not often a sister can say "my brother saved my life."  But I can.  Not a lot of sisters will boast about their brothers.  But I do.

 Today is my brother's birthday.  A huge number of people have watched Indie Game: The Movie, played Super Meat Boy and enjoyed interviews with Tommy and Edmund.  Tommy comes off, simply said, as kind of an asshole and arrogant.  I think my friend Nicole said it best; Tommy is very intimidating when you first meet him.  He's very sarcastic and brutally honest- a honesty that is not sugar coated and is his very true opinion.  Others perceive it as arrogance, but as Nicole said, once you know Tommy his personality is lovable.  He doesn't say things to win popularity contests, that would be fake and Tommy is completely genuine.

I guess you can say Tommy is like a... junior mint?  Hard on the outside and gooey minty inside?  Fine.  I didn't want to say it, too cliche, but Tommy has a heart of gold.

Tommy and I have always been very close as brother and sister.  Our bond is very untypical and always have been.  I was as much a part of Tommy's video game education through his childhood, I was always beside him watching him play; from Super Mario Brothers and Legend of Zelda to Super Mario Galaxy and The Legend of Zelda: Ocarina of Time.  We spent a lot of time together, we never had typical "brother/sister" fights.  He always protected me and talk about my accomplishments to his friends and vice versa.

Tommy is a very giving person.  Before Super Meat Boy, as a family we always tried to donate presents to needy kids on Christmas, Tommy would say "if I ever get rich I want to buy these kids bikes!" And he did.

Tommy had taken me to a Valve meeting and dinner the Christmas right after the Super Meat Boy release.  (I told Gabe Newell that "I was Tommy's brother" and made a fool of myself.)  That night back in the hotel, Tommy checked his bank account and saw he received his first Super Meat Boy check.  What was the first thing Tommy did?  Without hesitation, he calls our parents who are back in NC and asks them to go to Walmart, get any remaining names off the 'Salvation Army Giving Trees' and to buy them everything they want.  It was 2am back in NC by my parents were more than happy to do it.  They ended up with 4 bikes, tons of clothes, amazing toys, coats, shoes, basically everything above and beyond what the children had asked for.  Our whole family was in tears, we were finally able to do what we had always wanted to do, because of Tommy. Tommy does things every year for children but there are times we do not know because he does not do it for recognition he does it because he loves children to be happy.

The things my brother has done is simply astonishing and I'd like to believe anyone with new found wealth would do the same.  But what sets Tommy apart from any other person with money and heart is what he has done for me.

Tommy has literally saved my life.  I mean it when I say that literally.  If it had not been for him I would currently be, most likely, permanently in a wheelchair or 6 feet under.  Families are suppose to help each other; but there is a point when that help can go breathtakingly over and beyond.

I have a number of very difficult and debilitating diseases; I was infected in 1997, diagnosed in 2008 and began my major fight in 2012.  Between the end of 2008 and the end of 2011 I went through numerous medical tests, surgeries, etc.  The medical expenses kept me back from leaving my parents house and going out to have fun or just even shopping.  My brother wanted me to have a life and surprised me by paying the entire medical accounts off.

Mid 2012, almost exactly a year ago, my health bombed drastically, nose dived straight down to rock bottom. Suddenly I lost my ability to walk and talk.  Minimal treatment would have helped but this was no where near good enough for my brother.

I have not had health insurance in SEVERAL years.  I've been told numerous times that I am "too high risk" making insurance premiums unaffordable. All medical expenses since 2008 have been completely self pay- or rather in a pile of bills several hundred pages thick waiting to be paid.

After several weeks of research with the help of my parents and Tommy I found the nations leading specialist on my diseases.  Despite the extreme cost, there wasn't even a waiver or flicker of "no" in Tommy, he set me up with an appointment as soon as possible.

I was deteriorating quickly, and we, as a family realized the severity of my illnesses. My brother vowed to pay any expense to get me back to 100%, and one year later, he is still holding his promise.

I speak to my doctor monthly, fly 2,600 miles across country every four months to see my doctor, my medication- I have over 15 different oral prescriptions, over 35 supplements, ridiculous amounts of IV bags and medications (today is bag number 266), four separate injectable medications, expensive medical testing, and several medical procedures... Did I include airfare, hotels and rental cars?  Not just for me but for my mom too, and Tommy also flies in to attend my doctors appointments with me.  My parents and I try to pay what we can and Tommy pays ALL the rest.  You know that beautiful Tesla Roadster Tommy has?  With what he has spent on just my medical expenses he could have bought two more of those...

I would simply hope that anyone with money with a family in a situation similar to mine, I'd like to believe they would do the same.  But I've met several families and people where that is just not the case; nor would they continue to help so much for so long.

Last week I had a visit with my doctor, it's been one year since my legs stopped properly working well.  We learned that this treatment will take much longer than expected.  I'm strong, I will get better, but not without Tommy by my side (and I'm not just speaking monetarily.)  He is a major encouragement and inspiration to me.  He does everything and anything to make me happy and feel better during my worst days.  He knows what silly and ridiculous things to say and do just to make me laugh, and since I've lost some memories he reminds me of jokes and memories from our childhood.  (He reminded me the other day of our love of Carl Winslow and his magically "disappearing" stapler trick hidden in his jacket.)  On top of all the medical expenses he spends money, for example, to take me to PAX just so I can get out of the house and do something fun.

So that's Tommy Refenes in a nutshell, the REAL Tommy Refenes.  The charitable loving heart of gold mixed with some annoying-ness, intelligence, and of course some asshole-ness.  He deserves to be recognized for what he does, he deserves for others to know what kind of person he really is.  I can not possibly thank him enough.

I am so proud of him; not just because of the video games but his generous heart and continuing to be the sweet (asshole), loving (jerk), he's always been and will, without a doubt, forever to continue to be.  Thank you Tommy for being the strength that keeps me up and stops me from giving up.

HAPPY BIRTHDAY, TOMMY. . . I LOVE YOU! <3