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.

Hampton trip...

So i just realized that i never even told you guys about what happened in Hampton! I'm not sure how this one got missed...

Well basically what happened is C and i signed up to volunteer at the spartan race up in Amesbury sometime in august. We got stuck in a ton of traffic on the way up and by the time we got to park we were beyond late for our assignment. There was a huge screw up on the spartan race's park by lack of direction with the volunteers and then we had decided to head up to hampton and make it a beach day and then go back the following day to help break everything down.

We really had an amazing day just hanging out by the water, laying back and relaxing. We ended the day buying some fireworks and setting them off by the beach. Before we left to head back on the 90 minute drive home, we decided to stop and get something to eat. 

I saw a place i have been before and decided it was a good idea to stop there. We stopped at Ceal's clam shack. (Now mind you i have learned now that it is never a smart idea to eat at a shack/stand with food intolerances and allergies but unfortunately this lesson i had to apparently learn the hard way.) I almost squealed with excitement when i saw a little sign that said that they had Udi's gluten free rolls. When i went to order i told the woman i was allergic to gluten and she seemed to understand and put in our order. 

I was so excited that i even took a picture.. oh the irony

My plain hamburger on a udi's roll popped out of the other order window a few minutes later and i woofed that thing down like i haven't eaten in days. Within about five minutes my stomach started to get really upset. I knew something wasn't right...

So C started driving us back and i could feel my stomach starting to wrench and twist around. WHICH FEELS AWESOME. This was seriously the worst episode i have had in the past year by far. I was sitting in his car and with each passing moment i could feel myself getting more and more sick.

Sweating, fevering from hot to cold, hot to cold.

Feeling my stomach twist and turn.

And to be honest and a tad graphic i didn't know if i was going to straight up shit myself or throw up.

The poor guy kept asking if he needed to pull over. No no...

Now keep in mind we were still doing that hang out dating sort of thing then. And lets get real no one ever wants to go into explicit detail of what their body does to "evacuate" food when you are intolerant/allergic to it.

Anyways i don't really remember much except for sitting in his car crying with my hand over my face and repeatedly apologizing for having that happen and being completely mortified. We finally got to my house and i was completely delirious at this point. Rushed into the house and pretty sure i told him i would grab all of my stuff later.

C being the super nice guy that he is sent me a text shortly after making sure that i was okay.  A few weeks after this thats when he told me that was the day that he knew he really cared about me.

Needless to say i did not end up returning the following day. I was feeling the effects for about ten days after it happened. Sick to my stomach for the following three and bloating  weight gain and brain fog for the rest.

I followed up by calling the restaurant and letting them know what had happened. I wasn't mad (although i had every right to) i was more concerned that someone with a more severe allergy could have landed in the hospital. The manager was very kind and assured me that she would be re-educating her employees on food safety. 


Moral of the story/lessons learned:

1. NEVER EAT FROM A CLAM SHACK AGAIN

2. C is a keeper.

3.Finding places to eat out is becoming increasingly impossible with my ever growing food intolerances.

4. If at any time you are not sure about the safety of your food DO NOT hesitate to talk to the waitress, manager or chef.

I was feeling pretty good during the day and made this little thing in the sand. looks pretty neat eh?