Why I'm Thankful For Lyme Disease Thanksgiving 2014

Last year I posted reasons why I'm thankful for Lyme Disease.  This year I'm still thankful for those same reasons but I do need to add something.

I'm thankful for Lyme because it taught me how to support a friend during difficult times.  My friends that I have are the best that I can have, they have supported me during the hardest times of my life and I've always felt that I'd be able to return the favor as needed.  Earlier this year one of the friends who supported me by (not literally) bending over backwards was diagnosed with Lyme Disease.

My knowledge of Lyme, the experiences I went through after experiencing Lyme for 16 years, and the mental drain I went through when first diagnosed with Lyme really gave me the ability to turn around and support my friend whose always been there for me.  I was able to be there for her during her first herx experience.

The last thing I'd ever want was for one of my bestest to see what I've gone through, but sadly that has happened.  I am thankful that I was able to be there and try based on experiences, knowledge, and the love I have for my best friend.

Thank you for being there as much as you have for me, and I hope I've been able to return that support.

New bullseye

Thursday I went horseback riding with my family in Washington State. Following this ride a rash formed. My specialist confirmed Tuesday morning that it was definitely a new bullseye rash. Saturday I formed bartonella rashes in a very visible place, on the day if the wedding photography. Lyme on the west coast is a different strain that commonly found on the East coast. I don't think I'll ever win.

Other details of my doctor appointment will not be discussed, so no updates like normal. Hopefully in 4 months there will be a positive update.

Body Stopping

While on my PICC the previous stent of IVs I had a couple times where I felt different. Bad different sadly. It's really hard to describe the feeling I have, it's not Lyme it's different. It's a different type of weakness, tiredness and all around feeling awful. The first time I felt this I asked my doctor what was going on. I described what I was feeling and he told me it was a sign that right now my body is not able to handle much. At that point he immediately took me off all medications to let my body rebuild. I do believe the last time this happened with my PICC was PAX 2013. I wasn't on IVs immediately after it before, and shortly after I restarted IVs was when I had my "break through" of feeling so good I got my PICC removed.

That would be awesome if that's what happens this time. But, the body giving up things happened several times before without the great ending result.

I have done a lot this year. I've actually been able to work, I've been able to travel. It's hard though, because after not feeling well for 17 years, the instant you even feel slightly better you want to spend it all at once.

There's a term chronically ill patients are called; spoonies. A spoonie will save their "spoons" for moments of worth. A spoon is your energy, and sometimes being sick you have to conserve and choose what you want to spend your energy, "spoons", on. This last year I over estimated my spoons, because I had a lot more to spend than I've ever previously had.

Since august it's been the same, if not more severe with my over spending of spoons. I've traveled more than I should; but only because I have a fear of being stuck, which I am. I have a hard time accepting that at the moment so the second an opportunity comes up to leave the house, I grasp at it.

I got back from PAX 2014 a week ago, and I've been down ever since (and was down while there. I missed two days of helping at the convention because I was stuck in bed.) Today I was able to recognize that unique "body giving up" feeling again. It's the weekend so I don't know exactly what to do, there's actually a lot of dilemma. Next weekend is my brothers wedding. I do not, at all, want to feel like this at his wedding weekend. I can't. I've made a decision without doctor consent because I won't be able to talk to him until Monday to stop all antibiotic medications tomorrow and Sunday. No IVs, no mepron, malarone, etc. By Monday hopefully I'll be able to notice if I feel better or worse, and by that time I'll be able to contact my doctor and see what he says. I feel like he will tell me, like previously, to stop everything for a week then slowly restart. I see my LLMD on Tuesday of the following week, so no matter what change happens, at least I'll be in my doctors hands immediately following the wedding.

We will see what happens. I hope this feeling goes away, it literally feels like my body is stopping, and no matter how much I want to operate, it won't let me.

I hate this. I want to work. I want to see my goats. I want to go out with friends, be normal and do things. I hate hate hate this.

Step Back?

Well, I've not updated for a while because I haven't been wanting to admit that I was getting worse again.  But I am.  I feel like I'm taking tremendous steps back, although everyone just says it's a "bump in the road".
I have stopped looking on facebook for a couple reasons.  A lot of people in the lyme community (not all of course) are very negative and don't post anything except about their treatment, it's depressing.  I like spreading information for awareness and education, and understand sharing your fight for awareness (which is what I'm doing) but there is a point where it becomes to far and past awareness into trying to get attention. I feel that bringing this up will cause some people to get angry with me, but that exactly is my point.  There is no reason this should make you angry unless you are one of those people. The other reason for stopping facebook is a little more depressing; with my current downward spiral, I'm extremely depressed.  When I see others having a normal life, getting married, having kids, doing cool things, I get extremely jealous and upset.  More jealousy than anything.  I can't have that, I don't know when I'll be able to, and as happy as I am for those who have taken these great steps in life, a bit of me is extremely jealous.  I hate that, but it's true.

Blah blah blah, I'm getting another PICC line.  I'm very much not happy about this, but I feel like it's the only thing I can do right now.  So, yeah, that's basically it.

Two Weeks Eliminates One Year Of Healing

It took me over a year of extremely hard work to actual start to feel a life where I was somewhat "normal". Over a year of extremely hard antibiotics, oral but mostly through IVs several times a day, every day. It only took 2 weeks of back sliding, of the wrong kind of orals, no PICC, something to put me right back to where I was a year and a half ago. 

Granted I started to get worse back in Decemeber right before Christmas. But these last two weeks I've started with the problems walking... And it seems like everything got extremely worse, extremely fast. I haven't driven in a couple weeks because I'm just too exhausted. I don't want to cook anymore, I can't bring myself to sew... I don't like this.

I don't want the rest of my life to be like this... What if it is? What if it's this constant back and forth; fighting so hard for so long, only to have a couple months of happiness then to be thrown back down in the sand to start the year long process all over again... I just want to have a normal, happy life. 

One of my biggest fears is that Lyme has ruined my whole life. It had already ruined completely a couple years, messed up majority of college and high school...but the fear is that it has completely ruined my whole future and my ability to be a normal person.

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.

WE NEED YOUR HELP TO RAISE AWARENESS!!!!

UPDATE: We have gotten some awesome donations from several people.  Thank you so much to Kim Thurston, Doris Molina, and Marion Fish-White!!!  You guys are amazing.  Please check the list below to see what we still need if interested in donating.

Last year, we walked in the Hendersonville Christmas Parade, and it was a big success.  We want to do it again this year but we need help.  Not only do we need a bunch of people to walk in the parade with us (who DOESN'T want to walk in a parade, please come and join us if you can!!!)  but we also need help with our supplies to build the float.  Last year my parents and I funded everything for the Christmas parade, but this year that is a task we can't do.  So I've made it very easy for people to help.

For those who are local you can help several ways - you can come help us at the crafternoon's to help build the Tick and do little crafts to complete the parade float we are doing.  I have a list (see the bottom of this post) of supplies that we need.  This can be stuff that was bought at goodwill, or something that you have but don't need anymore.  If you want to supply us with actual stuff, please be sure you can meet with us very soon to hand it over.  The third way to help is to donate money to us to help with the expenses of the parade here: Go Fund Me!

Here is the list of supplies that we need, once someone donates an item I will remove it from the list so we don't get an over abundance of supplies we don't need.

• white glitter
• black glitter
• santa hats
• reindeers (at least two, at least 21")
• cotton or fake snow
• white spray paint
• black spray paint
• artificial christmas tree (at least 6')
• lime green cute bug ornaments (but we could always use more)
• spray paint for trailer
• trailer
• newspapers (could always use more)
• chicken wire
• 6 white bed sheets (only need two more)
• 2 white table clothes
• 2 black table clothes

Along with these supplies there are things that need to be done that we probably won't be able to finish during our weekly crafternoons, and we need people to work on these at home in their spare time.  This is the list of things that need to be finished.  (I will mark them off as someone agrees to take on these tasks.)

• 1 banner for head of the parade
• 2 banners - "the tick that stole christmas"
• 2 banners - something about prevention
• 2 banners "keep life beautiful" or something like that
• stuffed ticks

Please share this list to friends and family, and help us make the Christmas Parade super exciting and full of awareness for Lyme disease.  If all you can donate is a dollar, that's better than nothing, and would absolutely mean the world to me.  

Thanks so much!

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!

One Tiny Pill...

...has messed me up royally.

I've been doing really well, I got my PICC line out, I've been motivated to get a part time job (haven't yet) and to sew. I've been looking at the possibility of moving out of my parents house again, and then I go and messed everything up.

One friggin pill... I miscounted my medications and didn't realize until after about an hour and a half of crying for no reason that that is the reason I've been so messed up the last couple days.

My brain has been doing weird skipping things, I've been excessively irritable and hateful, super negative about every little thing and feel like I deserve absolutely nothing in my life. The nightmares, tummy aches, uncontrollable rage hell even Saby could tell something was wrong with me just via text.

Luckily I had switched types of medications not to long ago, so I had some old medication left over. From what I've read, this stuff is still in my system and I should be back to decently normal by tomorrow morning. Monday I'll get my prescription from the pharmacy.

I don't like the idea that my life is being controlled by medication and that it will always be that way.  Stupid diseases. 

In conclusion, it's probably best that no one talks to me until tomorrow sometime.

Gluten Free Amylose Free Quinoa Buffalo Chicken

It was so good I forgot to take a picture before I started eating it... so here's a cute buffalo (was going to be a cute chicken but then I felt bad because I ate the chicken.)  Anyways.  I've been craving buffalo wings, but of course, I can't have them.  So I kinda invented this recipe (I couldn't find any quinoa chicken breading, but I probably wasn't looking hard enough.)  So here you go!

Again, another pre-warning, I follow the Shoemaker No Amylose diet, so it may be different for you all, just be cautious and follow your diet like a good person.

Homemade Buffalo Sauce (Better Than Store Bought)
Ingredients:

• 1/3 cup butter
• 1/2 cup Frank's Red Hot Sauce
• 1 tablespoon white vinegar
• 2 teaspoons garlic powder

Directions:

Melt the butter either in a sauce pan or microwave.  Once butter is melted, whisk in hot sauce, vinegar, and garlic powder.  Once combined, set off to the side.  (Mix again before serving.)

Quinoa Chicken Breading

Ingredients:

• 1 cup quinoa
• 1/2 tablespoon salt
• 1/2 tablespoon pepper
• 1/2 teaspoon paprika
• 1/2 tablespoon garlic powder

Directions:

In a very lightly oiled skillet pour 1 cup of quinoa in and heat.  Toast the quinoa on medium heat for about 5-7 minutes.  The quinoa makes cute little popping noises when they are toasting.  Make sure they don't burn.  Once toasted, put in a blender or food processor and blend until they form a fine powder.

In a medium bowl, mix quinoa flour-ness with the salt, pepper, paprika and garlic.  Now it's ready for breadin'.

Buffalo Fried Chicken

Ingredients:

• 2 boneless chicken breasts
• 2 eggs
• 1 cup of quinoa chicken breading
• cooking oil
• 3/4 cup of homemade buffalo sauce
• crumbled bleu cheese

Directions

In one medium bowl, mix 2 eggs together.  In another medium bowl, have the chicken breading.  I'm not a fan of thick chicken, so I beat out my chicken, but that step is up for you.  Take beaten or non-abused chicken and dip in egg, then into the breading mixture.  After the chicken is dipped and breaded, I like to bread it again, so repeat the above step.  (You don't have to if you don't want to.)  Once breaded the number of times you enjoy, set chicken on wax paper and place in the fridge.  The longer the chicken stays in the fridge the more the breading will stick when it's fried.

In a pan, bring oil up to a boiling level.  Fry chicken until nice crispy and brown AND ISN'T RAW.  Plate chicken, and pour on desired amount of homemade buffalo sauce on each chicken.  Top with some sprinklings of bleu cheese, and voila! Done!

No Amylose, Gluten Free Quinoa Pizza!!!

I crave pizza so much, but on a no amylose diet, basically I'm screwed.  Until now!  This was soooo good, I actually think I liked this crust better than regular pizza crust, believe or not.  This is also gluten free, dairy free (the crust, not the cheese), and no sugar.  It's so good, I can't say that enough?  The cool thing about this too, is how quick it is made too.

Ingredients (makes 3 small personal sized pizzas)

• 3/4 cup quinoa (let soak in cool water for at least 3 hours)
• 1/2 cup water
• 1/2 tablespoon of minced garlic
• 1/2 teaspoon salt
• 1 teaspoon of Italian seasoning mix (I used oregano, basil, rosemary, and thyme)

Directions

Preheat the oven at 450 degrees F.  Drain and rinse quinoa.  Add all ingredients to a blender, and blend until it is a smooth thick liquid.  Pour mixture on top a greased baking sheet into desired amounts for each crust.  (If you want to make one large pizza go for it!)  Smooth mixture into desired thickness and size.

Put baking sheet and crust(s) into the oven and bake for 10-15 minutes.  Watch for the edges to turn golden brown.  Flip the crust(s) over and bake for an additional 5 minutes.  Again, watch for the golden brown.  Remove crust(s) from the oven.

Decorate your pizza crust as desired!  I used pizza sauce (which didn't have any added sugar or starches), mozzarella cheese and fresh veggies.  Once decorated all pizza like, throw (okay don't throw, gently replace) your pizza back into the oven and wait for cheese to melt.  This should only take a couple minutes, just keep a close eye so you don't burn it.  Once cheese is melted, all done!

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!

Be Careful Who You Talk To

A man entered my support group and tried to tell everyone that Lyme is cured by a horse dewormer. If anyone tells you this please know it is potientally life threatening. He does not have Lyme himself but says he can prove that it cures it. This man suffers from Morgellons. Please read the following information: The main purported symptom of Morgellons is "a fixed belief" that fibers are embedded in or extruding from the skin.  Many dermatologists treat Morgellons as delusional parasitosis. After a thorough medical examination to rule out known organic causes for the symptoms, delusional parasitosis patients are typically prescribed one of several typical antipsychotic drugs. Self-Treatment: Persons with Morgellons symptoms may turn to alternative remedies described on web sites and discussion groups. Some treatments are dangerous, however, and have included the use of bleach, veterinary medicines intended for deworming horses, and industrial insecticides.

Please be careful of who you speak to on the Internet and their suggestions.

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.

Second Opinion

I've been asked why I haven't gotten a second opinion from another doctor. In reality my LLMD is my 6th opinion I've gotten from doctors, and he is the only one that has helped me progress in my treatment.

I don't think it's realized where I'd be right now if I hadn't started to see my LLMD. I have said several times before that last year around April I had issues walking and talking. I literally couldn't walk. I don't think this comment has been taken seriously and is fully understood. Last April I was living in California, and mom, dad and Tommy had no idea how bad I was because I hid it from them as much as I could. I didn't want mom to panic; she was all the way across the country. Mom had no idea how I was until she got off the plane for my birthday in June, and I was so bad off mom basically moved in with me until I had to move back to NC in September. My job was threatened because I could no longer walk properly and that is something I've not told many people.

I've been to several doctors since 1997 and the first several opinions I got was that I was faking my illnesses to get attention. Then I was told that nothing was found wrong with me even after test after test. My old family practice doctor was the first doctor I went to where they actually realized (through a blood test) what was wrong with me and tried to treat it.

What is so confusing to people is that "Lyme doesn't exist here" and therefore doctors do not pay attention to how to treat this disease and coinfections. Therefore the treatment I received from that family doctor was very subpar and didn't help me at all.

The doctor I have now, my LLMD is the 6th doctor I've gone to, and his is the most helpful and life saving for me. It's been one year of treatment and I'm proud to say I'm walking (without much of a limp), and I, most days, can talk without a problem. Yes, I have been improving, but like many other illnesses, this isn't a magic cure. It will take me a long and hard fight to get close to 100%.

Those who've asked why I haven't gotten the second opinion needs to understand that I have, and the doctor I'm seeing now has saved my life, literally and I completely trust him with my life.  You also need to understand that doctors who do treat Lyme like this completely risk their whole lives to try and help people like me. They are all in danger of losing their licenses because of a controversy that is beside Lyme. (I've asked continuously to PLEASE watch 'Under Our Skin' on Netflix to understand why this is.

I'm always open to questions. Please, don't go behind my back and talk amongst yourselves to figure out why I'm doing treatment the way I am. Ask me. I love educating and I love answering questions, so please do, and please don't assume the worse.

I plan on writing an in depth article about issues closely related to this in the future, this is just my own personal plea.

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

Personal Battle

This week has been very difficult for me. Earlier this week I went to see my doctor about a crunching noise I've had in my back for as long as I could remember. It isn't popping, it's literally at least 10-15 crunch sounds whenever I straighten my upper back and neck. Expecting only that my posture is bad, and an easy fix I was kind of blown away when the doctor told me I have a minor case of scoliosis. She said instead of my spine being curved, it is twisted at the base of my skull and upper back.

This is a difficult thing for me to swallow.  Especially all the research I did asking other lyme patients and though research papers, that this might actually be Lyme disease twisting and disfiguring my back.

This stress was packed on pretty high with my mom and I. Then yesterday my mom and I let something two incredibly ignorant and insignificant people put us over the edge. Being as upset as we were about the previous days diagnosis of a corkscrewed spine, a simple comment from these lying, trashy, selfish people, one who we have known forever as nothing other than a scamming attention seeker, really upset us both. The stress the situation put on me triggered a migraine worse than I've had in years. The last time I had a migraine of this magnitude, I ended up in the ER 6 years ago. Then I started vomiting. Non-stop, violent for 7 hours straight, until I could finally fall asleep. This morning at 6 am, I was in so much pain I could barely walked. My knees wouldn't move, my hips were frozen, and the pain throughout my body was insane. Luckily, after falling asleep again, I woke up in my normal range on the pain scale, but still am currently a bit nauseous. 

But I've learned a lesson. The reason people like myself get so upset by simple reasons is because we still grasp to care about these people. Even after everything the person who triggered all this stress has put me, and their family, in over the years, all the pain and hurt this person has caused, a couple months ago when this person called me with relationship trouble and needing someone to talk to I did not hesitate to offer this person any possible help I could give them. I am a compassionate person, as is my mom. We bend over backwards for people who never show gratitude, or even an equal amount of love. Lesson learned; those who aren't worth it, we need to accept they aren't worth it. These people will never care, they aren't heartfelt people, and they have very little to no compassion for anyone. Instead of striving to get people to love me who don't, this energy needs to focus on the people who do love me!

Last night I was in so much pain, I actually wished I wouldn't wake up. I truly actually hoped... But today I realize if I would have passed, it would have only been a mistake. I love the people who are there for me, and I couldn't possibly, now, care any less about the people who don't.