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

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...

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?

September 25th 2013

So i don't even know where to being without ranting. Its been a long month full of lots of changes and new beginnings. 

So the good, the bad and the nasty.

The Good:

I have been seeing an amazing guy for a little while now who i can officially call my boyfriend. We'll call him "C" (out of respect for his privacy and i'm pretty sure he doesn't even read this blog...). He is amazingly supportive, a genuinely good guy and for some reason or another can put up with me and all of my health woes. FINALLY NOT SINGLE. Better yet that feeling of being 100% comfortable with someone and knowing that you completely support you. Nothing can really touch that feeling right now.

Oh and remember back when i got glutened in Hampton? Oh ya that was C in the car driving. That was 90 minutes of pure horror on my behalf sitting in that car mortified of having that episode with him being around. Well at the very least he knows full willingly what he got himself into haha. 

C and i got to spend a nice weekend up in Vermont at the Spartan race at Killington Mountain. I was so happy to have a stress free weekend away. I was really proud of my progress with my arm strength because for the first time i was able to do the monkey bars all by myself (saving my 30 burpees! yay!!) 

I have become an unstoppable trivia force and am seriously considering packing my bags and traveling around winning trivia everywhere i go. Just kidding. But seriously i have been winning trivia every tuesday for a while now and finally won some money on scratch tickets ($105 total!) plus i won a winter classic hoodie and tee shirt last week. winner winner.

I have stopped losing weight but i am super happy with the visual progress i have seen in my body from continuing to work out. (far left early Sept, middle is two weeks ago and far right is the day after the spartan race)


Lastly finally getting a grip on what foods i can have without dying. Close to coming to a point where i get what my diet is. Dessert hacks! I attempted to make "ice cream" from bananas. Well it didn't blend as well as i hoped and i added some almond milk and soon enough it ended up looking more like a frosty from wendy's than ice cream. Either way it was delicious and totally agreed with my tummy!

Frozen bananas, nutella, non dairy enjoy life chocolate chips and slivered almonds!

The Bad:

My stomach problems have only been getting worse. With every weekly trip to the doctors comes more medications, more diagnosis, more bills, more tests..more more more.

After seeing Karen (my naturopath) this past week i actually took a day off work today because i was sick. Sometimes after she does the manual lymph node drainage a day or two later i feel like death. Correction every time she does it this happens. It just gets worse like it is today when there are bugs going around. 

The Ugly:

As of this past week i was officially diagnosed as having celiac disease. Now this is a bittersweet diagnosis because i'm very glad to know whats wrong so i can make corrective changes to my life to get better. But on the other hand my tests for sensitivities and allergies are getting worse. Either that or i had an incorrect reading previously. Either way it makes me pretty concerned. 

Sick girl supplies at it finest 

After i get the lymph node drainage massage from Karen i get pretty sick unfortunately. Whats happening is that my body is physically releasing all of the toxins and sickness that was being held into my system. So basically it sucks more times than others when its flu season because otherwise i don't get sick it just comes full force all at once. So here i am home sick from work today writing this post. At least i'm being productive?.. ish?

Silly faces can heal your soul sometimes..maybe not but i enjoy making a goofy face anyways

Now don't get me wrong  over the past few months my attitude towards my health issues have greatly changed. I feel as if i have become more positive and confident in my decisions regarding my health. I have a great support system of friends who unfortunately share similar issues, a great boyfriend and a mom who is trying to understand. Surrounding yourself with good and understanding people is really the best advice i can give to anyone in a similar position.                                                                         

 I feel very optimistic for the future and even with my new diagnosis comes more life changes. This is all a process of learning and growing and i am more than thankful for everyday and for the people who are in my life. 

Nothing but love love love.

Until next time....
  

Medicine Galore!

So i have been asked by many people about the specifics of my medications on a daily basis so i figured i would write you all a post!

So this is my current medication routine. I have previously been on other antibiotics, l-glutamine, and other enzymes and juices that are suppose to sooth my stomach. I just found this to be the best combination for me.

FIRST

So first thing in the morning when i wake up i take a probiotic. 

This medicine needs to stay refrigerated (as you can see in the picture i keep it in my guacamole drawer.. and yes i have a whole drawer of guacamole.) I take 1/4  teaspoon per day and it is in a powder form (i'll do this twice a day if i am feeling sick to boost my immune system). I have a starbucks cup i got for christmas that i use to drink it all out of since its a larger glass. I have found that sometimes the taste can be a tad weird so you just have to grin and bear it and add more water if you need to. Although this comes out more like little granules and doesn't really mix too well and DO NOT MIX WITH HOT WATER. The Ultraflora was made to break down in your warm belly so it gets really gross in your cup when you do that. If you can wait like 30mins before eating anything after taking this. Although in all reality i don't follow that because i wake up way too late all the time.. I take this and then get started on making breakfast which usually gives me about 15/20 minutes. 

Buy here

NEXT

I take digestive enzymes WITH my food. 

I take two of these pills every time i eat. I find that for me if i stop taking them or lower the dosage then i don't find it to be as effective. Now when i first started taking these i was advised to take 1/2 a capsule per meal (3x a day) to start then up them by 1/2 a capsule until i get to 2 per meal a day. I've heard from other people who tried diving right in that it bothered their stomachs especially if you already have a sensitive stomach. This i do like to mix with warm water because i find that the powder mixes easier. Now you can always swallow the capsules as well but i personally like drinking them better because i feel it working faster. Now if i was smart i would take it like 15 minutes before eating but again time management isn't really my strong suite. 

Buy here

LASTLY

I take apple cider vinegar WITH my meal. 

Sometimes i don't have the stomach to finish it before i eat so it does the same thing if you sip and eat. I do 2 tsp with about 16 oz of water before every time i eat. Now i personally like Bragg's vinegar because i'm all about it being organic and gfree and cheap. Just makes sure you mix well before putting this in your drink. Now i like to mix this in my big cup with my straw and just suck the whole thing down. I'm going to warn you.. This is for sure a taste you need to get use to. Because well.. its vinegar and not so tasty at first. I feel a huge difference when i skip the vinegar when i eat though so its 100% worth the temporary yuckness. I have heard from other people that cutting it with some organic apple juice or pineapple juice can help with the taste and make it more bearable but i would rather just water it down a ton. 

Buy here

TIPS

So i like to drink from a cup with a big straw for these (especially the probiotics) because #1 when you're chugging it down there is nothing splashing on your face and i find hat you get more of the probiotics when you use the straw instead of chugging it because it won't stick all over the walls of the glass. 

Gfree people- ALL OF THESE ARE VEGAN AND GFREE. I personally forget that certain medications have gluten in them and i love these ones

I do NOT recommend buying any medications from third party sites. Metagenics i purchase straight through my doctor's office but you can purchase it straight off their website. Digest Basic i buy from amazon and they have super fast shipping usually 2 days and i would only buy from amazon directly not another dealer through the site. 

And as always if you have any questions or post ideas send them to my email :)

Phillips.katie@live.com

June 25th Update

Hello everyone. So it looks as if i haven't really updated everyone on whats been going on for the past couple of weeks. It been crazy over here with all the weddings, graduations, birthday parties etc. 

So as the weather gets warmer this just means that it is the start of race season! My first (but certainly not last) mud race was the Ruckus run in Marshfield, Ma a few weeks ago. I did it with all my co-workers which was a ton of fun for everyone. This race is four miles long (the challenger) and has obstacles throughout. 

A super unflattering photo but i find it hilarious that i have daisies in my hair.. as you can tell i don't take these things too seriously...

I took some time to enjoy the nice weather and hang out by some pools.. (and that sushi in that container was awesommeeee. The sushi chef at Whole foods made me some rolls for myself without rice! Pretty sweet huh?)

Tequila lemonade and sushi poolside 

And then i spent some more time in a pool...

And somewhere in between there i remembered i needed to update my picture for bodybuilding.com and took this gem. 

June 21st, 2013 (174ish)

So as of a few days ago i weighed 173.8 which is pretty awesome. Although lately i've been getting frustrated that i'm not seeing as much progress as fast as i would like.. i do have to remind myself that this is all a process and that it takes time. And of course the universe sent me this gem so i can sit back and relax and see the progress take effect.

My goal is to be another 5 pounds down by the 4th of July or at the very least under 170 which would be the first time since high school. But if it were to mean that this is where i top out and that i'm healthy i would be totally happy. 

And sorry for the sort of lame post today i'm totally scatter brained!

Katie <3

What is means to be "Sick"

So i feel like i have gotten a lot of grief from my own family as well as other people when trying to explain my condition and my pain.

I want to emphasize that just because someone does not physically see my pain it does not make it any less real.

Now let me explain to you what it feels like when i eat bread. I would say if i were to eat that devilishly delicious piece of french baguette that comes with my meal at Panera. Within ten minutes i would be clutching my stomach, rolled up in a ball on the ground and most likely cursing out whoever is closest for letting me eat that. Its like period cramps on steroids (its on both the sides of my abdomen and not centralized) and comes in waves of pain while its oh so slowly being digested. mhmmm sounds like my kind of party right? Completely worth it...sometimes :/

For five years before my diagnosis of leaky gut i had moderate to severe stomach pain after i ate anything. Now trying to explain this to people can be difficult. I would often excuse myself to go use the bathroom and cry or i would dip out of hanging out with friends to go run home to use the bathroom. Not only were the reactions from eating either completely embarrassing and humiliating (running to use the bathroom as if you had just eaten bad food from a brazillian steak house...see Bridesmaids for more details on that one) or i would go home and legit clutch my stomach and cry because there was a war of epic proportions going on in there and there was nothing i could do to stop it. And believe me i would prefer neither to happen when i go on a date...or hang out with friends.. or in general eat anywhere that isn't in my hypodermic bubble called home.

Now i use the word sick to describe a variety of things that could happen to save my friends the gory details. Because honestly how many poop conversations can you have with your friends before they just get that that's what you meant?

Being my type of sick is no fun. It has made me miss out on opportunities to experience new things, having fun with my friends because i'm not sure what food will be available or if there will be an excess able bathroom, eating new cuisines because i have NOOO idea what is in it and we don't want an erupting volcano moment.

So when you look at someone with THAT face, try to not judge and make me feel like my issues aren't any less real because you can't see it. Try to understand and hugs heal a lot more than you would think.

HUGS