Thursday, July 3, 2014

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.

Thursday, January 16, 2014

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.

Wednesday, January 8, 2014

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.)

Thursday, November 28, 2013

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!

Lastly (but not leastly) I am thankful for my boyfriend, Andrew.  He understands fully what I am going through.  Coincidentally his mom had Lyme, but even if she hadn't I know Andrew would understand and still stand beside me through my sickness.  When I am with him, even in my worse days, he makes me forget my pain.  His smile calms my nerves and is so full of care it melts my heart.  There is no doubt in my mind, that no matter what I'm going through, he will be there to hold my hand.  He protects me, stands up for me, and is my knight in shining armor.

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.


Tuesday, November 12, 2013

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!

Sunday, November 10, 2013

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.

Thursday, November 7, 2013

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!