Wednesday, September 24, 2014

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.

Friday, September 12, 2014

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.

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!