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.