Light at The End of The Tunnel?

I feel like from being sick i lost my identity. I feel as if i was once a person and now i'm not.

Past interests aren't interesting.
The things i once loved cause me pain.

In my mind i can't even separate my sickness from myself.

I feel so lost, so desperate and i'm losing sight of the light at the end of the tunnel.

I feel so alone and its an endless swirling of dead end specialists, testing, bills, stress, special diets and pills.

So tired of being tired.

I just want to not be called interesting by my doctors.

I die a little more every day just hoping to be boring one day, to live a "normal" life.

Its all too much.

4.14.14

HELLO LYMIES!

So many things have happened since we last spoke. err well from when i spoke and you read haha. 

So BIG things have happened

I moved!! Little girl in the big city, well its not Boston but its fifteen minutes away and super close to work which is amazing. As many people battling auto immune disorders understand all the extra rest time you can have is a total godsend. My place is beautiful and i'm finally starting to really get settled and explore the area and really call this my "home". I share it with three other people that are rarely home which means i get a humungooo gorgeous kitchen all to myself! Not to mention there is a totally gluten free health store down the street that makes fresh juices! Can you say amen?

I honestly can't remember what was in this but it was delicious.

I started working weekends for an online company telecommuting. Which means i'm working a lot more now.. aka why i haven't written anything in a while. Nothing really crazy to report here.. you know work is work. 

I met with a nutritionist. Her name is Juliane and she was amaze balls. The only downer to her being so awesome was the new dietary restrictions i was given.. No dairy (duh), no gluten (double duh), no dried fruits or fruit juices and NO SUGAR. Now having lived more than half my life learning to not become attached to foods because i know in some way or form things always seem to be "bad" for me.. no matter the actual nutritional value. So when i heard i had to stay away from sugar i really wasn't concerned. 

Gluten free oats, frozen mixed berries heated up, walnuts and banana.. my now go to breakfast!

This was the book i was told to get by Juliane, yet to read it all the way through since i got it today but i'm excited for this change! Fuel your body not the disease.

HOLY HERX! I don't know how to emphasize this more. Starting on the 4th i stayed away from sugar. After 24 hours i had a severe migraine, and here is little naive old me thinking this was how it was going to be for a few days. Now let me reiterate.. when you have lyme disease nothing is ever "that simple". Three or so days go by then i notice my stomach is getting super sensitive. I then start alternating in between a low and high fever for another week, i then loose my voice, stomach is having pains and my body pains start worsening. Now mind you i totally doofed up and forgot to check the lunar calendar, because behold the full moon we had. In case you didn't know full moons somehow tend to make my pain and symptoms more aggressive and worse. So here i am a solid ten days after my last piece of sugar (sort of.. i cheated and had a SMALL piece of chocolate and lordy did i pay for it) and finally starting to get over the fevers and throat things. 

Oh and how did i almost forget.. I got the okay to drink again! THANK YOU UNIVERSE. So i had some clear rum and tequila the other night with total success! Well partially.. i apparently lost my tolerance and became a lightweight.. and my wallet is okay with that! haha.

Me and the boyfriend out in Beantown :)

I started working at my work's apothecary part time, four hours doing my normal desk job and four hours down in there. I honestly love it because it breaks the day up, not to mention since i've been on more than half of the things in stock its a good learning experience. 

I finally have been feeling well enough to start really moving around. I got so serious i even re-instated my gym membership! I am yet to go since this all happened today but i will start back slow soon which i'm super excited for.

Its been so nice being so close to so many friends and new activities out here i even got to go bouldering the other day! I plan to try as many new activities as my body will allow now being close to the city. Not to mention its fantastic to be able to go out and not worry about an hour plus ride home!!

A few weeks ago when things were pretty terrible i received this in the mail:

This was an awesome reminder that you are not alone and there are others in the same place you are all over the world. Be good to another and be kind.

Here's wishing well to my fellow fighters. Keep on trying it'll pay off. Here are some little words to live by to help keep your mind in a good place!

<3 Namaste lovies! ॐ

3.23.14

So you may have noticed that over the past few posts things have been far and few in between. Now this took a lot of serious thought writing this post and for the past month or so my thoughts really went to a dark place that i know so many others with chronic illnesses sadly understand so well. Lately i have been going through some major and much needed changes in my outlook on life, my path, lyme disease and how my actions affect others. 

I have recently become super fed up with the fact that my body constantly fails me. After an incident shortly after my last post, i decided that it was time to start back at light exercise. My knees, hips, wrists, shoulders and fingers have all become increasingly weak and have been causing me much pain. There was a period of time where i was literally collapsing because my knees were too weak to hold me up.  After a few really embarrassing stints of this i decided it was time to try something new. 

I decided to start back up with practicing yoga. I always loved yoga and was religious about my practice for a few years prior to when i started to get really sick. Now keep in mind i have not really worked out in about half a year and i haven't gained any weight either (thank god), so transitioning back has been quite the progress. I started with one hot 90 minute vinyasa flow class a week, modifying almost every pose because my wrists were so weak they felt like they would snap. To now being able to complete a whole 50 minute strala yoga dvd. The progress is slow and small but never the less progress. I notice the immediate effects on my mental state after yoga. I immediately feel more grounded and at peace. I feel less like i am thrown into chaos but more as a buoy bobbing with the incoming waves, floating yet still in control, anchored to the sea floor. 

I have since also stopped seeing my practitioner in Rhode Island. I wasn't feeling much of a benefit from treatment and just felt worse and worse. Although i can't say i feel incredibly better i can say that i feel like things are for the most part a bit more livable. Now whether or not this was a dumb decision i don't know right now, but only time will tell. 

At the end of April i have scheduled an appointment with a LLMD who actually is a doctor in my building at work. I decided that its about time i try to see how a physician who relies on antibiotics and combats the symptoms with supplements, IV therapy (vitamin infusions), and other alternative treatments like cranio-sacral work, massage, acupuncture etc. I truly do feel so very fortunate to be working in a facility that i am able to have access to all of these things in the same building, and get an employee discount on services making everything more affordable.

Although i still do not physical feel any better than i have in the past, i feel that focusing on the positives has helped me move on a little. I still sleep all the time, sadly through weekends and plans with friends, still feel all the pain that i have all along and i feel as if this will not change for a long time. 

All in all a few other big things have happened and has truly made me question a lot of decisions i have made. I in the past have put my health on the back burner to participate in things that in turn made me worse (i.e. new year's drinking… oh hell no). Trying to pretend like i am still capable of being the same person i was, doing the things i use to do. I am no longer that person. I feel i have grown to be a much more mature woman, who understands when to say no and realize its okay to be selfish to be more healthy. At the end of the day  realized what are healthy decisions for my soul, my body, my heart, my emotions. I now wake up every day thankful for the things i have in my life, thankful for what health i do have, and welcoming new opportunities to learn, grow and evolve to be the person i am meant to become.

After some long thought and soul searching i finally feel more peace than ever. With some much needed closure with some negative people in my life and the addition of some amazing positive light, i feel as if i am ready to take on whatever comes my way with grace and peace. 

Think of your decisions and ask yourself is this nourishing you or feeding into disease?

<3

Reflection

Days like this make me wonder if things will ever get better. I feel as if i can never really move forward in my life having this disease constantly clawing at my ankles whenever there is a glimmer of hope. Not to downplay the great events that have been going on lately, but i just feel as if i cannot experience happiness to its full extent. 

Having Lyme Disease is a constant test of your perseverance and will to survive and thrive in the chaos and always changing landscape that is your health.

Lyme disease has taught me many things, most of all to be grateful for the things you have in your life at the moment. But right now things seem hopeless.

I've become really good at hiding my pain, hiding my frustrations, hiding the things that i am not ready to accept to myself. Lyme has defeated me.. broken my spirit and love for life. 

Lyme fucking sucks. 

2.12.14

Hello everyone! 

So as you can see i haven't written anything in a while here. Honestly i forget people even read my blog. I originally started this as an online journal to catalog my experiences in figuring out what the hell is wrong with me. Over the course of this blog and my journey through my Lyme disease i have made many good friends from all over the globe. In which you were all successful in reminding me how bad i am at updating my blog as of late.. so thank you for the emails to kick me in the ass :)

So good news, bad news..

Recently i left my last job managing a physical therapy clinic to move to a larger,  integrative and function healthcare facility. This move was strategically made in order to fit my needs as of this moment. I needed to move to a company where taking a day off because i was sick wasn't such a big deal, i needed better benefits and as a bonus i actually see a few doctors in my new facility now. Staff perks include free treatments (yoga therapy, craniosacral massage, energy re-alignment, IV therapy etc), reduced copay and out of pocket expenses and more. Although this is now a solid 45-60 minutes to drive to work now, i think this was a great move for myself now and for the future. 

OKAY enough about me gloating about my new job (currently on week 2). Other things… Since starting my new job, i'm not sure if it was random timing or if its the mercury retrograde or the actual job itself but something is taking a huge tole on me. My energy is way down, my barriers are down making it difficult to not be empathic and take on others negative emotions, the amount of foods that are "safe" has decreased significantly, body aches and pains are becoming increasingly difficult, and my headaches and light sensitivity along with VERY difficult body weakness has returned. Oh did i mention nausea too? I am now seeing a lyme specialist once every week for a laser treatment and every other for a full treatment. I have an appointment for a few weeks out to have a consult with the head MD at my facility to talk about alternative treatments since i find I'm not doing so well just with my one doctor. And then next week i meet with a NP at my work to get orders signed off to start a magnesium IV as per orders from my other lyme doctor. I do notice when my magnesium levels are really low i do have low energy and extreme weakness, so i truly hope this will make a difference.

This past weekend i got certified as a Reiki level 1 practitioner!! I am super excited to be on my journey in my health and wellness fields. I am looking into getting my RYT to become a yoga teacher as well. Although that probably wouldn't happen for another semester or two. 


Anywhos i'm ranting and this will be edited and have fancy photos and whatnot added in later.

Just so everyone knows i am alive and doing relatively okay. Just keep taking it day by day… one day at a time.

-K

Happy New Year! 2014

HAPPY NEW YEAR! 

Officially the first blog post of the year and on the first day!

So as this is the new year i feel the need to somewhat acknowledge the whole resolutions thing.

Personally i am not a big fan of resolutions, but i do encourage goals! My goal that i constantly strive for is to get better at taking care of myself. Now as i am still in what i call the beginning stages of coping with a chronic illness, i find that there are tons of areas for me to improve upon.

First and fore most last night was new years eve. YAY! I spent the night with good friends and my amazingly supportive boyfriend and i broke my own rule and drank. Now for those of you who have Lyme Disease you know how important it is to avoid alcohol, sugars and grains since they all go against your body trying to detox. Well i figured it was a special occasion so why not. Well i remember why not… Not feeling super hot today. Slept most of the day and now that i am awake i am dealing with a seriously still neck, sore muscles in my back, upset stomach, clear digestion issues. etc.

All geared up for new england weather.. and yes that tiara says Ciroc (taken approx 1:30am mind you)

So now i learned that lesson alcohol is again off the table. Now i am going to make an effort every day to get better at eating foods that will aide my recovery, get moving more even when i don't have the energy, listening to my body more and giving it what it needs, get better at detoxing, get more organized and stop listening to negative people. 

I have found through this journey in dealing with Lyme i have sadly lost a few friends. I find that people often show their true colors when you are in need. After i went to the hospital for my heart problem i made the decision to not drive myself for a while out of fear that i would have an episode behind the wheel. Now this is when i started to notice "Friends" who i always made plans with, drove to go see.. those were the people that all of a sudden weren't able to make time to come see me or didn't make an effort to communicate with me.

So 2014 we are onto bigger and better things!

So making baby steps but my first big thing of 2014 i did was actually take my Detox 2. Now i have been dreading taking this ash looking stuff because of all of the negative hype my LLMD was giving it. 

Step one: Start at ash looking stuff and hype yourself up to do this.

Step two: Take Detox2 and put 1/4 tsp in a shot glass filled with water. Now off to mix and enjoy!

Step three: Down the hatch!

A closer look at the beast.

Final verdict: Not as terrible as it looks or as the face i make at the end of that video haha. The texture is honestly what surprised me the most since its pretty gritty like sand. The taste is exactly what it looks like. Tastes like what i imagine the ashes from cigarette do. Not that i'm going to be searching through ash trays to test that out any time soon..

So i conquered one of my fears. Now your turn!

Happy new year, can't wait to see what 2014 will bring…

12/28 update

Happy Holidays everyone!

I hope you all had a happy Hanukkah, Merry Christmas, and Joyous Kwanza.

I just saw my LLMD again and we have switched up my meds and routine yet again. She said it was because my body won't tolerate us moving any faster that we need to go slow with the heavy meds.

Good Morning pill routine

Betaine Hydrochloride 1 pill, 3x daily- to help with digestion

Iodomere 3 pills, 1x daily in the morning- to help with thyroid function.

Calcium Lactate 2 pills, 2x daily (afternoon/night with meals)- to help with heart palpitations

Symplex-F 2 pills, 2x daily (morning/afternoon with meals)

Detox 2, 1/4 tsp daily before bed.

Along with these meds she directed me to eat pumpkin seeds to help aide digestion and fight off parasitic infections , magnesium spray, epsom salt baths (to help with detox)






Detox 2 is no joke. So first impression was this is going to suck. Considering when i was in my doctors office she was explaining to me that both her and her office manager have been on it and it was not easy to take. It looks like a charcoal ash that comes in a small container. The directions say to mix with a small amount of water, down it like a shot and then down water. Now here comes the unfortunate part.. it tastes like it looks (like ash) and you can't have it with any food. 45 minutes before you eat and it needs to be taken on an empty stomach.

So this is a few days after i saw her (the 26th) and i am definitely noticing some new side effects.  My LLMD has explained to me that sometimes when the parasites and bacteria die off you can have their emotions. Either rage or feeling as if you are grieving are common when people are fighting Lyme. I have definitely been feeling equal sides of both lately which can be very confusing and they can switch very fast. Trying to keep my emotions in check can be more difficult than normal which is just another added obstacle. Also the heart palpitations are back, along with anxiety, fevers, swollen glands, increased paranoia, shakey/unstable hands, increased muscle fatigue and general fatigue. I can't say that i have high hopes for these changes in medication but then again it may be just because i'm feeling pretty down as i write this.

As the new year approaches, heres to wishing for a healthier and brighter 2014!

Lyme Disease Isn't Real

Every now and again i get reminded that there are people out there who are truly ignorant when it comes to Lyme Disease and invisible diseases all around. Today when i was typing out my normal update post i had a little notification on my G+. I looked and it was a few comments on my video. As i looked through the comments. i noticed this one: 

So normally this sort of thing doesn't get to me because i understand that i can't make everyone understand what this disease does to people and that quite frankly every village has their idiot. But i just hope that for this persons sake they never know the pain of Lyme Disease.

And just because this is the internet it doesn't mean you should voice an ignorant opinion. Rule of thumb: If you wouldn't say this to my face don't be a bully online.

My Lyme Disease Story (spoonie- lyme life)

Hello everyone! So recently i have felt really inspired by some other lymies to make a youtube video about my history with lyme. So if you have twenty minutes of your time and would like to have a better understanding of what Lyme does to a person, please watch my video. Comment or email me if you have any questions :)

Peace, love and good vibes <3 xx

Post Doxy

So i am officially over the three weeks of hell from the prescribed Doxycycline. 

So general recap of that is basically all of my symptoms intensified and worsened. Although i could fortunately get through it without taking any time out of work, it was extremely difficult and i found myself sleeping at any given chance when i had free time. I seriously couldn't have gotten through a day of work without napping at lunch. Serious perk of working at my place is we have therapy beds and we close down for lunch.. THANK GAWDDD. But one of our patients was awesome enough to introduce me to a new favorite thing. Everyday i would get moderate to severe nausea after i would take the doxy and sometimes randomly through the day. After a few days of throwing up at work and deciding that won't fly i adjusted the times i took the meds to be sick more at home instead. AND THEN i was introduced to this fizzy wonderfulness.

Not sure what it really is because its not soda but it basically is a bubbly and fizzy vitamin water. Thing saved me for a few days.

Slowly but surely i'm learning how all of this works. One step forward, two steps back. Anytime i feel any sort of improvement Lyme has a way of slapping me in the face and pushing me back in line. 

My final day of Doxy i went to see a Lyme literate Nurse who owns her own practice out of Providence. The woman i saw is a RN, MSN, APRN and associated with ILADS and has been taught by Dr. Dietrich Klinghardt, M.D., PhD himself. So needless to say her reputation and credentials were enough to make me want to see her over others in the area (not to mention she came highly recommend from a friend).

Remember that time i told you all that EVERY TIME i go to the doctor i get a new diagnosis? Certainly non exception in this case apparently. I was diagnosed with chronic fatigue syndrome (not new but certainly one that has been given and taken away from me many times along this road) and cell mediated immune deficiency. 

Along with new diagnoses always comes more pills. So now i am up to a chummy 22 pills per day (plus the Ph drops i take in water).

Which means you know what i'm asking for christmas this year… NEW PILL ORGANIZERS! Although to the non-spoonie this may seem like a boring gift but seriously a new nicer more organized one would be much appreciated. Because now i have stackable ones (about 8) that screw into another and don't do much for daily organization by time of day or meals.

Calcium Lactate for my eye and neck twitches

Zypan for Digestion with every meal (to be taken instead of the digest basic)

Symplex-F for Hormones and energy support

So my first appointment with this doctor was on Tuesday. Wednesday after taking the pills for the first time i felt GREAT. I was even telling one of my lyme friends how nice it was to have one good day. And of course it was my long day at work…spent inside all day. So then comes Thursday and now today Friday. And where am i? In my bed.. blogging on a Friday night because i have been fevering on  and off for the past 48 hours. 

Today i had a new symptom too that i have never had. My knee was getting severe pains radiating down my thigh into the knee caps and burning. Normally i have more acheyness and the pain comes and goes really fast but not today. This new one really wanted to hang around. So happy today i only had to work for a few hours because by the time i got home i was ready to cry it out and finish watching season 2 of American Horror Story on Netflix. 

The one good thing about being sick is it seems to carve out a hell of a lot of time in my schedule to either watch movies/tv shows or read books. Which i love to do both. But on the contrary it leads to me canceling plans last minute.. a lot. Like tonight i was suppose to go out with my cousin and her boyfriend in Providence. With raging body pains and fevers  i had to cancel :( sorry gingey. A few months ago i was planning a big skiing week trip with a bunch of my friends. I realized half way through planning that maybe it wouldn't be the smartest idea. Physical activity has been nonexistent for me for the past few months and to hold up to a whole week of skiing and snowboarding doesn't sound like it'll end well. So i had to cancel sooner than later and now i await the pictures on Facebook. Taunting me. All of these simple things i took for granted before i got sick now seem millions of miles away. I just feel like i can only look into other peoples lives and just play back the memories of the times i was able to do the things they are. Living vicariously through their Facebook posts and snap chat adventures. 

I am very thankful for the people who are there for me through all of this. Trying to keep me positive and on track with treatment. Even though a lot of times this means them sacrificing something.

Staying late through break at least means the gym to himself haha

My super supportive and handsome boyfriend who is studying at school for his last few finals this weekend. Yes i said this weekend. For some reason some people find that its an okay thing to give finals on Saturday after classes end? Seriously depriving me of quality snuggle time with the boy. But after he comes back home i have six weeks with him which is AMAZINNNGG. 

So i am trying to stay optimistic about all of the meds and see what comes next. Detox weekend ahead because it looks like we're getting 10+ inches of snow on Saturday. Keep in mind i drive a glorified go-cart so aka i'm going nowhere.

And let me leave you with some quotes from my symptom tracker app haha (pretty awesome eh?)

Peace, love and positive vibes my friends. xx

Doxy Doxy go awaayyyy

So due to Lyme hands i accidentally deleted this post after i wrote the whole thing out on my phone.. so if i seem scattered or a bit ragey thats why.

So the past few weeks i have been on doxy and prior to being on medication for Lyme, i was truly optimistic about the process. I read a few books, watched a documentary, talked to my primary care and got a specialist appointment for after i finished up with three weeks of doxy. 

Now sadly the more i take the meds the more sick i become. My body is constantly lashing out at me in new and "interesting" ways. For once that word is not a good thing. I would kill to be nothing more than boring to doctors for once. As we speak my hands feel like they are that of an 80 year old. I feel like my joints are seizing up as i type. Joint stiffness and pain, muscle aches and pains, muscle fatigue, mental fatigue, brain fog, memory loss, migraines, light sensitivity, hypersensitivity to touch etc. I know there are more but i honestly can't remember. 

Having a chronic illness it takes a huge toll on you mentally, physically and emotionally. As i said i went into this whole process all bright eyed and now that i see what my life is slowly becoming i am not so optimistic  I have spoken with numerous people who's story start out similar to mine and lead down a bleak path. 

Pale is in now right? Vitamin deficiency for the win

I already feel isolated because the constant need to explain myself as to why i don't have the energy to do certain things or why i can't go out drinking. Recently with the heart episodes i'm afraid to drive. Rightfully so i could never forgive myself if i were to have one behind the wheel of a car and crash. With the hypersensitivity to lights as well it makes night driving a terror so i avoid it altogether. In doing so it seems that i have lost contact with a few people i thought were friends. People not understanding that i can't simply "drive on over" or "go out for a drink". 

Too tired and weak to stand so this is what i do at parties..

As to my other friends who i hear trying to downplay my illness or play it off as if this is somehow something i chose for myself thats not how a friend should act. I am hurt to hear that you find this somehow amusing to you that "i'm always sick". Believe it or not i'm not having a blast over here and honestly i'm not thrilled that i feel the need to "defend" my illness as if i need to prove how sick i am to you or something?

I feel as if i am a constant burden to my friends and that i'm slowing them down from how they want to live their life. 

I simply don't fit.

I didn't chose to have this. 

I miss going out with friends and staying up late.

I miss tequila, cake, or anything with sugar or gluten.

I miss having the energy to go to the gym.

I miss being in the woods.

I miss hiking.

The things that seem to keep me the most sane are the things that right now can hurt me the most. 

I'm tired physically and emotionally. I'm depressed and i feel more alone than ever.

This fucking sucks.

Herx on!

I started my 200mg of Doxycycline for the treatment of Lyme Disease officially as of this past Saturday, November 16th.  Now keep in mind that i am a total baby and never had to really learn to swallow a pill up until now. But for some reason the impending doom of my failing health seemed to be a good enough motivator to grow a pair and go ahead and do it.

So here we are. I am an adult who can swallow pills.. YAY. And no one officially cares because i should have been doing this a long time ago.. 

So these past few days have been quite wonderful. So as i have mentioned in previous posts i am familiar with the Jarisch-Herxheimer reaction. To describe what this reaction is correctly i think it is best to refer to Lemon & Lyme's Blog post: 

"Chronic Lyme patients have to deal with the Jarisch-Herxheimer Reaction from antibiotics. The reaction is named after Adolf Jarisch and Karl Herxheimer who published descriptions of the reaction in 1895 and 1902, respectively (Rull).

For short, it's often referred to as "the JHR," "herxing," or "a herx." Not all patients will herx, it depends on the level of infection and the type of treatment, among other factors, but it's something to be aware of before beginning treatment. If not expecting it, a herx can be a terrifying and incredibly disorienting experience....Herxing occurs when dead or dying bacteria release large amounts of toxins into blood and tissues at an alarming rate. "This provokes a sudden and exaggerated inflammatory response" ("Herxheimer..."). Essentially, the body is attempting to eliminate the released toxins much faster than it is able to ("A Body...").The bacteria can also drill into the white blood cells and live inside. Killing these particular bacteria also results in the death of the host cell. The immune system releases the massive inflammatory response, and this will "cause a rise in symptoms in the area in which the bacteria are being killed"". 

Okay so i realize that wasn't the smallest passage. I am all too familiar with this from having manual lymph node drainage massages for a little over the past year or so. Personally when i Herx it feels like something like this:

When in actuality it looks more like this:

Fevers

Hot Sweats

Nausea 

Muscle Pain

Joint Pain

Headaches

Hypersensitivity to Light

Hypersensitivity to Sound

Hypersensitivity to Smells

Anxiety

Depression

Paranoia 

Muscle Weakness/Fatigue 

Mental Exhaustion

Cognitive Problems

Trouble Reading

Slowed Motor Function

Vertigo

Short Term Memory Loss

Tachycardia 

Heart Palpitations

Bloating

Bathroom Problems (Diarrhea -Constipation) 

Hallucinations

SOUND LIKE FUN YET?

The hardest part of all of this is that i look completely normal when the majority of this is happening. Which makes all of this that much harder constantly reminding people that although i may look well.. its not all what it seems.

Invisible diseases take their toll mentally, physically, psychologically. 

I am beat down, tired, nauseous, and tired tired tired... and to believe this is only the beginning of the beginning.

3/21 days down...

New Diagnosis New Life?

When someone has told me that they had an experience that "literally changed their life", i always found that hard to believe. I find that most events in my life that could have been considered that were always made into memories that occupied shelf space in the library of my brain while i putted through life. Occasionally looking back and reflecting. 

This past Friday was surely an exception and an experience that completely changed the way i look at the world and life in general. Its in my professional opinion that having the feeling of dying will do that to you.

I was admitted into Mass General Hospital after being out at a show and having heart complications. 

I was with one of my best friends and her two friends seeing Mackelmore and Ryan Lewis at the TD Garden. That day was no different than any other. I worked in the morning, took a nap, ate food and then was off to get ready to pick up my friend and head into boston to get our tickets for the show. 

When i got there i was relaxed, excited and relieved. I had a really rough work week and it was nice to finally catch up with a good friend and be at a show. I have always found my happy place to be at a show or in nature and usually a show is more accessible. 

We saw the two opening acts and then halfway through Mackelmore's set (right after he played Thrift Shop) my friend noticed i wasn't moving around. The whole night i was dancing and wiggling (i swear i can't NOT dance when i hear music). Now this is where my memories get really fuzzy so this is my knowledge of what happened hearing it from my friend. 

I stopped moving around and stood there really taken back and she said that if she didn't know me better i would have looked overwhelmed by the crowds and claustrophobic. She kept asking me if i was alright and i responded multiple times saying "i feel weird, i feel sick, something isn't right". She said "okay do you want to sit down" and i said yes and bolted out of the general admission area, through the bleachers into the hallway. A little back drop here... i am almost 5'10" and my friend is 5 foot nothing so when i walk fast or run this poor girl is booking it to keep up with me.. and when i panic i run REAL fast. Anyways so i get to the hallway and sit down and my body is shaking pretty violently. Not to the point where i think it was a seizure but something for sure was not right. I wasn't really responding to any questions they were asking and i don't even remember anyone asking me anything. The EMTs arrived and starting poking and prodding asking my friend questions, asking me questions and i start to come out of whatever it was. I felt like my heart was going to explode. It was beating so fast and hard that i literally thought it was going to jump straight out of my chest. 

A week prior to this i consulted with a cardiologist because i was having episodes of heart fluttering or feeling as if it had completely stopped. Now anyone who has had any issues with their heart can understand what i mean by i was scared for my life. Now having body aches and pains, stomach problems, orthopedic issues i can all handle but when there is something wrong with an organ that determines whether you live or die by its normal function.. thats a whole other story right there. 

Once again this part is pretty fuzzy but they gave me aspirin to take after taking some vitals and i couldn't even fully control my arm and the pills flung off the wall behind me. We tried again and finally got them in my mouth. I was taken by the stretcher to the ambulance and off to MGH we went. 

Side note: Why are ER nurses either the nicest people you have ever met or condescending bitches? I mean yes i am aware i got a heart monitor to watch for these episodes and NO i didn't use it. Oh i don't know when you're not fully conscious would you have been able to reach into your bag and do that? I don't think so either.

After seeing three doctors a slue of nurses and attendants i was taken for EKGs, chest x-rays, blood work and more blood work (they mixed up the tubes the first time around and conveniently forgot to mention this to me until i asked to leave three hours later...). They gave me a blood thinner and did another EKG and then put me on an IV drip. I sat there waiting for answers for hours. After a while i felt fine and wanted to go home. And if you have ever had to tell a nurse that you wont wait for them.. well thats a whole other level of sass right there. So my friend and i had left now it being the following morning. TO HAVE MY KEYS LOCKED IN MY CAR. My friends friend drove my car from TD Garden to MGH so we could pick it up after (which i am very appreciative of) but he didn't know my car is from the dinosaur ages and doesn't work normally. So after calling security to come open my car and several failed attempts later, it was finally unlocked and we were on the way home.

Later on that day i woke up at 3 or so after that shitty night i had and my chest was beyond sore. I was calling my cardiologist and primary care HOPING they weren't closed for Veterans day so i could see them ASAP to get some sort of answers from these tests. Nothing.. noting nothing nothing. 

Test after test didn't catch anything and i felt like shit and i was scared out of my mind. 

My primary took some blood and i pushed him to test me for Lymes disease because one of my friends has it and has simular issues and they were already going to run some other tests since the blood thinner and IV fluids would have messed up my previous results. 

and on Thursday i got the news. I have borrellia burgdoeferi (Lyme Disease), ehrlichiosis and babesia microti. 

So now to play the game good news bad news. 

Good: This may be a possible answer to all of my health issues

Bad: This may just be another empty diagnosis and treatment that leads to nothing changing.

Good: This may be the cause to the heart problems and after being treated it could all go away.

Bad: The medication is known to be super aggressive and make people very ill before seeing any improvement. (If you want to read about the special sort of hell i am going to put my body through over the next few weeks/months/year(s) please read this  )

Good:This is treatable and curable but it will take years for all side effects to go away.

Bad: Caught this years after i would have been infected so the complications and treatment are significantly higher.

Bad: Treatments by Lyme specialists are extremely expensive and not covered by insurance past the prescribed medication.

Well it seems i have more bad things to say about this diagnosis than good but i am pretty optimistic that this will make a change in the way i feel and the way my body behaves. 

For the time being i am taking it one day at a time and seeing how it goes. 

I start my first day of medication today (Saturday, November 16th, 2013) so i will be sure to keep everyone updated on that.