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

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...