#Spoonie

When I first started doing my own Lyme research, I looked to other people's blogs for advice and information.  One thing I have noticed about all of these people is that they all refer to themselves as "spoonies". 

A Spoonie refers to someone who is living with a chronic illness.  This term comes from the Spoon theory written by Christine Miserandino.  At first when I saw this term I thought it looked silly for someone to compare themselves to a kitchen utensil.  After reading the spoon theory, I felt that I was finally seeing my everyday feelings put into words.  In effort to explain to her friend what it is like to live with a chronic illness, she laid out a few spoons on the table.  She explained to her friend that as she is healthy, she has an unlimited amount of "spoons" to work with each day.  Of course, with each daily activity a "spoon" is taken away.  For those of use living with a chronic illness, those "spoons" are limited.  And as each daily activity takes away one of our "spoons" we have to pick and choose what we are going to be able to do that day.  

This story really describes how my last year of college has been.  While most of my friends were going out and being social at night and on the weekends, I had used my "spoons" on going to class and doing homework.  By the afternoon, I was so worn our that going out was not really an option for me.  I also had to plan a head for the events I really did not want to miss out on, which required me to spend the day before resting.  Needless to say, I have become an expert at time management.  I have really struggled with trying to explain my situation to my close friends and feel that this story will be a great eye-opening tool for others!  

You can read the spoon theory here!

Reflecting: Plans after college

I still have not accepted that fact that in just 8 short days, I will be graduating.  As many hard times I went through with my health, I’m really going to miss this place. These past two weeks all I have been able to think about is that these are some of the last times, I am going to walk on this beautiful campus, attend some of these sorority events, live in this tiny apartment, and be so close to my sorority sisters and friends. 

One of the hardest things for me to grasp is that this is the last time I will ever live in a place like this. Never again will I live in a place where I am  in walking distance of all of my closest friends.  All the things are really starting to hit me.  I won’t be able to just  stop by one of my friends houses or run into my sisters and friends just walking to class.  Cleaning out my room has been so hard and not just because I have so much stuff, but because I have lived here for two years now.  The walls of this tiny bedroom have become a vision I will never forget.  With the amount of time I have spent in this bed, staring at the same walls, I could probably tell you every mark and imperfection on each wall.  Although I will not miss looking at the same view, it has become something very monumental to me. Not to mention that I cannot help, but think that these are some of the last times that I will walk around this beautiful campus that I have completely fell in love with. 

 Last Sunday my sorority had senior send offs as one of the events to say goodbye to all the seniors.  While I was sitting there listening to the letters written by the parents of the graduating seniors and other sisters, it really hit me.... this is one of the last times I will be in one location with all these amazing girls in one single location. I couldn't help but to look around at all my sisters thinking where everyone will end up after college and whether or not we will keep in touch.  As I looked around at all of my sisters in there letters, I flashed back to all of the amazing women that have shared these exact letters in the past four years.  I am so blessed to have found such a wonderful group of girls who have become my family and support system while I was at college. I have learned so much from this organization, and had so many amazing memories with these girls that it is so hard for me to let go.    

Now here I am 8 days away from graduating, and taking it all in. In this past year I have grown so much and become so much stronger.  I have learned how to be a fighter and I have made progress with my treatment. I have accomplished so many things and now it is time for me to start my next chapter.   For most college grads, the last semester is spent applying to grad school or jobs, so their post graduate plans will already be set into place.  Ever since my freshman  year, this has been my plan as well.   Instead of finding a job that will lead to my future career path, I plan on moving back at home and working part time.   For right now, I am just going to focus on my health and complete my treatment before heading out into the real world.  I am dying to get out there, and find a job to use the degree that I have fought and worked so hard for, but I am still in no shape to do that right now.  Although I am going to be so down when I leave this place, I will be so close to my family who are my biggest support system. 

It has been so hard for me to think about letting go of the place that I have lived in the past four years, saying goodbye to my close friends, and starting a new chapter.  I can truly say that I left a part of my heart here.  

Buyer beware: doctors promoting products

Before I started seeing the doctor I am currently seeing, I went to a well- known practice close to my house. Long story short: I quickly began to realize that this doctor spent more time telling me certain products that I needed to buy, than listening to my current symptoms.

Buyer beware: these products are reallyyyy expensive!! Now, I'm not referring to your doctor telling you that you should be taking certain supplements you can get from the vitamin store.  I am talking about your doctor telling you specific brand named products from specific companies.  Of course, wanting to get better I though that I really needed to buy these things.  I really started to catch on the day that my doctor told me I needed to leave because she was running late, while we were discussing a perscripotion of meyotlated folate I needed to take.  she told me this was the only company I would be able to order this medicine from.  As soon as I got home, they called me trying to sell me their producut, and let me tell you it was so expensive! To top it off, I recently found the same medication by a different brand at a much much lower price.

As most Lyme specialists don't work through insurance for legal limitations, you usually have to pay out of pocket.  My mom was paying soo much money for me and her to go in there and leave feeling like she did not even give us the time of day.  I know that there is not a big variety of specialists out there, but you should beware that your doctor truely has your best interest at heart.

Celebrating Lyme Disease Awareness month: FACTS vs. MYTHS

May is Lyme disease awareness month! I am so thankful that there is a month devoted to raising awareness about Lyme disease and educating others! So do to my part I thought I would post some facts vs. myths about Lyme disease to educate those around me.  So here it is:

Fact or Myth:

You can only get Lyme disease from a deer tic or a tic with a spot on it

• MYTH..... any type of tic and be infected with Lyme disease, even in the nymph stage when they are super tiny

Only those who develop a bulls eye after being bitten have contracted Lyme disease

• MYTH..... Although this is a sign of infection, not everyone's body responds in this way

Half of people who have Lyme Disease do not recall being bitten by a tic

• FACT..... about 50% of those infected do NOT recall being bitten by a tic

The CDC states that the treatment for Lyme disease is 22 days of Doxycycline

• FACT.... Unfortunately the CDC does not recognize the use of long term antibiotics as a treatment for Lyme disease, this causes a lot of legal complications for doctors specializing in treating the illness.  

If you are tested for Lyme and your results show a negative test, then you do not have Lyme disease

• MYTH.... Lyme disease can have a FALSE negative test! The CDC states that a doctor testing for Lyme, by law, must inform their patient that Lyme disease can show a false negative test and therefore are recommended to be tested again in the future.  It would have saved me a lot of frustration if doctors I had seen a few years ago would have followed this. 

Lyme disease is sometimes referred to as "the great mimicker" as it has been known to mimic other illnesses and disorders such as Lupus, Fibromyalgia, Chronic fatigue, and even ADD.

• FACT.... In fact, a lot of those who were diagnosed with these illnesses and others have actually been misdiagnosed  in the past and had Lyme disease

Now that you have the facts right educate others and protect yourself by following the NIH's recommend ways to protect yourself from getting infected! 

Eating gluten free: My 5 go-to gluten free snacks

Eating gluten free definitely has its health benefits but it also be a total pain.   Some people think avoiding gluten requires too much meal planning or is more expensive, but I have actually found easy ways to fit it in with my busy lifestyle!  So to save you some time and frustrations here are my tips for eating gluten free.

First of all, I mentioned before that I already eat very clean for the most part.  This means eating a very limited amounts of processed foods, so most of what I eat is naturally gluten free, but you have to indulge sometimes!

My 5 go- to gluten free snacks: 

1. Humus
 Humus is naturally gluten free and it comes in a variety of different flavors and it goes great with every vegetable.  I usually have mine with carrots or gluten free cracks.

2. Popcorn
 I love popcorn! I actually air pop my own and season it Kernel Seasons brand seasoning and a lot of their seasonings are actually gluten free! This is also great to remember when traveling because you can buy bagged popcorn in virtually every chip isle.  My favorite brand is the Wise brand reduced fat white cheddar or butter.

3. Peanut butter
For me this literally means spoon in the peanut butter, but its great to have with celery or put them on the rice cakes. To be honest, I am a total addict.  My all time favorite brand is Trader Joe's chunky peanut butter, and I have to say once you have it there's no going back to another other brand...although surprisingly the Walmart brand  natural peanut butter is a pretty good substitute.

4. Rice cakes
These pretty much taste like popcorn in a condensed form and they are soo good! My go to brand is the Quaker Oats kind, but any brand is good with a little peanut butter.

5. Chex cereal 
I am one of those weird ones who eats dry cereal as a snack, since I have never really been a milk drinker.  Chex cereal is a great gluten free snack because all of the flavors except the wheat are gluten free and you can bag it up and take it anywhere!

All of these have made eating gluten free so much easier while I am at school, and they are not super pricey like the gluten free brands are!

Detoxing: basic tips and tricks

Detoxing is a very important piece of your health, whether you are battling a chronic illness or not.  There are many different detox regimes, some even specific to certain health problems. Of course, when you are busy it is hard to fit another thing into your busy schedule.  In order fit detoxing into my busy schedule, I try to do small things to detox throughout the week.  Here are some small detoxes I do throughout the week that you can easily incorporate into your everyday schedule.

Lemon water- I drink lemon water every day.  It not only keeps me hydrated but lemons have great natural detoxing qualities.
Feet soaking- I try to soak my feet in Epson salt as much as possible, but it is really important for those days that you feel bad.  Soaking your feet can help eliminate harmful toxins like heavy metals from your body. I just have a heated foot bath that I add some Epson salt to and soak for 10-15 minutes.
Epson salt bath- Whenever I am at home I try to take an Epson salt bath at night.  This also helps eliminate harmful toxins from your body.

Another great way to detox is to see a homeopathic doctor.  They can soak your feet with an ionizer with drains the lymphatic system, bacteria, and harmful toxins. They can also recommend different detoxes specific to your health needs.  I personally saw a homeopathic doctor and really liked it, you just need to come open minded because some of their treatments are pretty out there.

In addition to all of these when I feel like I need to detox, I follow my Lyme diet as strictly as possible.  To review my Lyme diet read here.

Pulsing and Protocols

So I took a week off my antibiotics last week because I was going to the beach for the weekend.  I think it's good to take a week off here and there to give your body a break.  However, I do advise you to not do this frequently!

Taking time off every once and a while is great because it allows your body to lower its tolerance to antibiotic. Which also means that when you start taking them again, it will hit your body much harder than usual.  Needless, to say my meds have been kicking my butt this week!  I have been sleeping 11 hours at night and took two naps the other day...All with plenty of caffeine! I have also been experiencing some of the cognitive/neurological symptoms that I haven't had much of in a while.

If you are prescribed to long term antibiotics, how do you feel about pulsing?

I used to be on a protocol where I would pulse during the week by only taking meds on Monday, Wednesday, and Friday.  I would do this for three weeks, take a week off and start it over again. At first, I really liked the idea of this because it allowed me to take the weekends off so I would have enough energy to get out and socialize with friends.  In reality, I found that this is not enough medicine to be taking and your body is likely to quickly build up a tolerance this way.  The doctor I see now, has me back to taking meds everyday of the week.  And let me tell you I like it soo much more! I have definitely seen the most progress taking meds everyday of the week.  I do sometimes take a week though, but it is purely my own discretion.

My plans for the rest of the day: lots of resting and doing homework in bed!  How do you feel about pulsing your protocols?

Under Our Skin: My thoughts

I finally just watched "Under Our Skin" last night after searching for it for months.  Every doctor I saw encouraged me to watch it to learn more about Lyme.  If you have never seen the documentary, it basically follows a handful of people sharing their stories and experiences.  It also goes over some of the legal complications with Lyme disease which is something I think everyone should be aware of.

It was one girls story in particular that I completely identified with.  She started off telling her story by sharing how happy she was when she found out she had Lyme disease.  Meaning, she thought she would just take a round of antibiotics and finally be cured.  After being sick for the whole summer, and struggling with weird flare up of symptoms here and there for the past few years, this is exactly how I felt.  Unfortunately for both of us that is just not the case.  She is also very active despite being sick, just like myself.  Her reasoning, was that she was laying in bed so sick that she was absolutely miserable.  Working a time consuming job seemed to be the perfect distraction from her symptoms.  Since she was still fighting Lyme disease, she was still dealing with the hard symptoms day to day, but pretending that she was feeling much better than she was.  It really hit me watching her story, because this sounds just like my own story.  I still continue to go to school and go to school events even if it means that I have to drag myself out of bed.  Although I am pretty open about having Lyme disease in order to educate others, I constantly at like I am feeling much better than to avoid people feeling bad for me.

If you have never seen this documentary I strongly suggest you watch it, whether you have Lyme or not.  Not only is it full of actual stories and great insight, it also has a lot of factual information that most people do not know.  It is also extremely important that we educate others on what is happening with healthcare laws and Lyme disease.  If you ever get the chance to watch this documentary, pass it on and educate others around us. 

#thingsthatannoyme

Alright, I generally think of myself as a decently optimistic person...............but a girl's gotta vent! I think one of the best things you can do is process your feelings and vent it out.  This morning one of my friends instagrammed a picture with "things you shouldn't say to someone with a chronic illness," and I have to say they were very on point!  So here is my version of things that annoy me about Lyme disease.

Number one, it literally drives me crazy when people say that I have "LIMES" disease.  I am sorry but, I am not a farmer and I did not get an illness from a fruit that people put in their cocktails. Also ironically, for some reason I really, really hate limes so this bothers me even more... maybe its fate.

Number two, when people tell me I don't look sick. I just take the compliment... I mean that IS a compliment right?? But honestly is there some golden rule that says you have to look as crappy as you feel? Thank god that's not a real thing because that would be a whole new level of struggle.

And finally, those oh so friendly people who have decided that since they have never heard of Lyme disease that it is not a real thing.  These are the people that I just flat out ignore.  I mean, if you going to treat me as if I am dealing with an irrelevant and therefore a made up illness.. then I am going to treat you like you are irrelevant.

These little things definitely annoy me, but I have learned to laugh about it.  I mean what is life without finding humor in the little things that get in your way? Sometimes its good to get a good laugh and vent it all out!

The G word

So I finally took my cap and gown out of the bag today even though I got it a few weeks ago.  Obviously, I still have not fully accepted the fact that I am actually graduating.  It was only 9 months or so ago that my doctor was telling me that I would most likely have to drop out of school. Being the motivated person that I am, that was not an option for me.  That's not to say that this was year has not been a challenge for me.  In order to be able to graduate on time, I really had to prioritize. 

I am the type of person who loves staying busy, always running around getting stuff done and trying new things. I love exercising and just being active, and hate being stuck in the house!  I am also such a morning person that I would spring out of bed at 7 or 8 in the morning and workout or do homework just to start off the day.  As you can imagine, this new lifestyle was very, very tough for me to grasp.  I learned that I would need to rest my body and really limit my activity meaning no more working out, and no more of the morning runs that I love.  I was so tired that I literally could not wake up in the morning even if I had gone to bed earlier the night before.  So basically, between the fatigue and body aches, I was told to really take it easy meaning I would need to stay resting in my apartment.  As you can imagine, I was going to have to miss out on a lot of social events.  

So how did I mesh this new lifestyle in with the lifestyle I typically lived at school?  I continued to drag myself out of bed early because with Lyme, getting out of bed is a very long process so this kept me from being late to class.  My typical morning at that time: I would wake up, shower, get back in bed until I had enough energy to get ready, start getting ready for the day and taking breaks in between.  I drank lots and lots of coffee just to get through an average morning routine.  I was so sick that I could barely walk to and from class so I would come right back to my apartment and get back in bed.  I finished all of my school work while I was laying in bed.  So yeah, aside from a handful of social events and doctors appointments, I spent majority of my first semester of my senior year....in my bed.  And yes, I did suck as much as it sounds.

Now I am three weeks away from graduation, I have definitely improved from these past months, but I still have a ways to go.  I now have more energy to do more things I just need to prioritize and save my energy for the most important things.  As bittersweet as it is to leave the place I have made some of the best memories in the past four years, I am so incredibly happy to be graduating because it is a huge accomplishment for me.  It just goes to show, that if you want it bad enough, and try hard enough you can make it happen, no matter what gets in your way!

Until next time,
Julie

Exercising with Lyme: my first time running!

The weather was so nice here today that I decided to drive down to the river by myself and take a shot at running! And I was able to run my first FULL mile since I stopped running!! I can barely put into words how accomplished I feel right now.


 I have not been on a run since this summer when I had to stop because I could not physically get my body to do it.  I had to really push myself, but I was able to complete the full mile and walk the mile back.
Out of all the lifestyle changes I have had to make, not being able to run is what bothered me the most.  I am going to have to take it is slow, but I am just grateful to have made it this far!



Now I know it is not recommended to run while doing Lyme treatment, but my outlook is that you can break some rules in moderation.  If you are also battling Lyme, I encourage you to get out and do some exercises whether its yoga, strength training (with light weights or body weight), or just doing some walking.  I am a huge believer that a body in motion stays in motion, so making an effort to do small exercises everyday while help you keep up your energy levels.

For now I am going to relax and drink some lemon water to hydrate and detox!

My Lyme Diet

I am detoxing today so naturally I am going to be super cranky.  But I figured that while I am trying ignore my sugar cravings I would work on another blog post!  Through the past few months I have learned so much about detoxing and what you can and cannot have while treating Lyme.  So here is my Lyme diet! 

The basic overview of my diet is:

-        -Gluten free

-        -Low starch

-        -Low sugar

-        -Mostly no dairy

-        -No red meat or raw fish

Im not going to lie, when I first started treatment I though the dietary restrictions were such a pain and saw it as another thing I needed to add to my list.  I finally seemed to figure out a happy medium for clean eating while at school.  

Now I know being gluten free seems more expensive or that it requires more effort but if you are eating low starch, you are really limiting the amount of processed foods in your diet anyway so most of the food you consume will naturally be gluten free. 

Why do we omit gluten? 

Gluten actually turns into glue in your body.  It is already hard enough for our bodies to break down, but if you are trying to detox, gluten can lower your ability to get rid of bacteria.  You don’t have to get super crazy and check every label, just remember that if its unprocessed its most likely gluten free! 

Why low starch?

First off, most starchy foods are processed foods which you should be avoiding anyway because you should not be putting harmful chemicals in your body while trying to get rid of harmful things that are already in your body! Makes sense right? Second, starches have YEAST! Too much yeast in the body creates and environment for harmful bacteria and even mold! If you are taking oral antibiotics like me you already have a high amount of starch in your body already. 

Why low sugar?

Sugar actually promotes the growth of yeast which as I said before is very bad for your body.  Spirochetes are considered parasites and parasites thrive off of sugar! If you are having intense sugar cravings that is why!

Why no dairy?

I have always tried to keep my dairy consumption to the bare minimum because I am slightly lactose intolerant and dairy is very high in fat anyway.  The only dairy I consume is if I cook with a little bit of butter or if I am a eating something with dairy as an ingredient.  Dairy also has bacteria in it so you should try to limit it as much as possible. Also, dairy is mostly fat so as we are limited to the amount activity we do, eating dairy is gonna make you gain weight!

Why avoid red meat and fish?

Again, undercooked meat and fish can contain bacteria and if you have a compromised immune system you are less likely to fight these harmful things off!  

What about caffeine?

I have read a few things about omitting caffeine from your diet….. I don’t do this.  I have never been a big soda drinker, but I am a coffee addict.  If it weren’t for coffee this year I'm not even sure if I could have made is through school this far! Coffee is literally what keeps me going through the day.  

Of course I don’t always follow this diet as strictly as I should since I am still in college.  Sometimes I will take days off, but it is very important to get right back into it!

I hope this helps anyone trying to find a balance with their diet restrictions and I will try to post a blog on detoxing soon!

The start of my journey

Its hard to believe that this is my first actual blog post, as I made this blog a few months ago.  From being busy with school to my processing issues, it has been so hard for me to sit down and write.  I found out I had Lyme disease on my second day of classes for my senior year.  I remember getting a message from my family doctor's office saying to call back to discuss my test results.  Normally it is these kinds of messages that leave people feeling so anxious and worried, but I was so thrilled because for me this meant answers to a question that had been on my mind for months, "what is causing me to feel this way?"

 I had been feeling sick all summer without knowing what was wrong.  I was constantly tired, aching, and frustrated with not having an explanation as to why I was not feeling my normal self.  After an entire summer of feeling lost, I went to my family doctor to seek answers.  My family doctor is actually a nurse practitioner and she is better than any other MD I have ever seen.  I talked to her about how I had been feeling and she decided to do some blood work to see if maybe I was anemic and test me for Lyme disease.

When I returned the call, I spoke with one of the nurses for my practice and she told me that my blood work showed that I had Lyme disease.  I was so happy to finally have an answer, but was some what shocked.  I was so ready to just have a solution that I didn't even remember my NP had tested me for Lyme.  She informed me I would need to start 22 days of Doxycycline and find an infectious disease doctor as soon as possible.

I was so happy to hear this, because in my mind, I had answer to my lingering question and was one step closer to feeling like my normal self again.  But then I paused for a moment and I said to myself, "what the hell is Lyme disease??!!"Growing up in an area where we get lots of tics in the summer time, I was aware that you could get Lyme disease from a tic.  Other than that, I knew NOTHING.  I had no idea what I was getting myself into.  It wasn't until after I informed my mom of these results that I realized this illness is not just something I can make disappear with just a month of antibiotics,  I was going to be fighting this illness for a few months.   

I have always considered myself a strong person.  My mom is the strongest woman I know and raised me to always be a fighter, rather than let rough patches in life overcome me.  As strong as I may feel, this healing process has been very difficult for me.  I have had many sad times, break downs, and frustrations.  (And if you are reading this as a Lyme fighter, you will experience these too)  As hard as this whole process has been for me, it has definitely been a growing experience.  Yes, these have been the hardest few months of my life, but I have learned so much during this time, that I cannot help but be thankful.

I started this blog wanting to connect with other fighters of this illness and hope that my story can help others.  As I said before, when I started this journey I knew nothing.  I had no facts or information about this illness or even know anyone who have been affected by it.  People ask me all the time how I do it... "How have you been able to stay in school?" "How have you not given up already?" "How do you stay positive?" My answer:  I have been able to continue fighting through my faith, and knowing that God allows every thing to happen for a reason.  Rather than asking why this has happened to me, I remind myself of this everyday and am thankful that I have been given an opportunity that so many others my age do not get.  I have been given a challenge to learn from, and grow from which will allow me to develop as a person, and prepare me for many more challenges in my future.  And of course, I have my coffee to keep me going!! I hope that my blog helps you or someone you know struggling with this illness, and that its as therapeuitc for my readers as it is for me to write it!

Until next time,
           Julie