#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?