Have You Met My Nemesis? GLUTEN!

I have suffered from food allergies ever since I was born!  So much so that when I was a toddler, I looked like one of those starving African babies with the swollen stomach and tiny limbs.  I was literally allergic to EVERYTHING I ate and therefore had malnutrition.  My bones and teeth started to deteriorate.  Thus began my love/hate relationship with Gluten.

My mom always tried her best to make my food "normal" but I knew I was being deprived.  This deep routed feeling devoid of certain foods festered for years.  When I went to college and moved out on my own I felt a sense of food freedom.  I ate anything and everything that I had been restricted from.  And of course I gained a ton of weight and felt very ill.  

So we all know where this story is going, right?  I had Lyme all this time and we all know that Gluten is a NO-NO when you are fighting Lyme.  I have to say...and I know how ridiculous this sounds....trying to stay Gluten-free is the WORST part of having Lyme!  I'm crazy, right?!  I have episodes where I literally gasp for air for hours and I am in such intense pain I have to take medication to "knock me out."  But to me, the DAILY struggle  to give up Gluten is agonizing!  You would think it would be so easy because it gives me such terrible symptoms and I wouldn't want to feel that way, but because my food intake has been controlled since birth, I have serious emotional issues when it comes to restricting my diet.  

Food is a social outlet for me.  I love to cook for people (when I am feeling well) and I love to go out to dinner.  I get so angry when doctors or family members tell me that I am not going to feel good if I eat that bread stick!  I know this, but it's almost as if it causes me more emotional pain to watch other people get to eat whatever they want without me then the symptoms I will have from eating the Gluten.  Am I alone in this feeling?  Am I just a crazy kookaburra????  I probably need some intense therapy but hey....at least I've made the first step and admitted that my name is Sarah, and I am addicted to Gluten!

It is bad enough that I have a debilitating disease, but the fact that I have to restrict my diet also just kills me! And the icing on the cake is that when I do get all motivated to go Gluten-free, the gluten-free food is so damn expensive that I can't afford it because I am paying an arm and a leg to get treatment for Lyme Disease that insurance won't pay for!  Whew!  That was a mouthful!  Then I get angry at the whole situation again and the cycle continues :( 

With all that glutenygobblygook out there now, I will end with my "Make Margaritas" Inspiration for today:

Go BIG or Go HOME!!!

 I am 34 years old and have suffered from Lyme Disease and its co-infections (Babesia) for the majority of my adult life. Every day I am afflicted with some degree of pain and neurological symptoms such as anxiety, brain fog, memory loss, and confusion. Some days are worse than others to the degree where I am  so weak I cannot walk or get out of bed, I experience shortness of breath/chest pain, involuntary muscle twitches, and Bell’s Palsy. I have attempted to cure my diseases with multiple oral antibiotics, several herbal supplements, and months of IV therapy. These treatments have only suppressed the symptoms. After many years of struggling to hold down a job while fighting these diseases, the symptoms became too severe and I was put on disability in October 2012.

After my Lyme Literate Doctor was recently forced to turn over her medical license, I felt like I had reached a turning point in my treatment and it was time to “GO BIG or GO HOME.” I started researching Lyme treatment centers in the U.S. and after hearing the testimonies of some “Lyme friends” who had been cured ,I made the decision to go to Sponaugle Wellness Institute in Clearwater, FL. Dr. Marvin Sponaugle’s patients have less than an 8% relapse rate and he has treated celebrity Lyme patients such as Yolanda Foster from Real Housewives of Beverly Hills. The treatment is a six to twelve week full time program. 

 In a manner of speaking, this is my last ditch effort to be cured once and for all. I have decided that I am no longer going to settle for having just a few good days every once in a while. I want to live a “normal,” healthy life! My passion has always been helping others. I believe that I have been given this health struggle to spread Lyme Disease Awareness. When I am cured, I plan on starting a non-profit organization to spread awareness and help raise funds to assist other Lyme patients in receiving life saving treatment.

“At Sponaugle Wellness Institute we practice integrative medicine. We combine the best of western medicine and naturopathic medicine. Our mission is to diagnose and treat the underlying cause of our patient’s illness rather than to treat their symptoms. What distinguishes our clinic from other Integrative Wellness Centers is our extraordinary brain expertise. Through treating 7,000 patients with psychological and neurological disorders, we learned that we must first heal the brain to heal the body. The brain controls every organ and system in our body. The integration of modern brain science with anti-aging and functional medicine gives our patients the most holistic medical treatment in America.” (http://sponauglewellness.com/about-us/)

With all this being said, with the help of my husband, we have launched a full blown fundraising campaign to get me to Sponaugle in 3-4 months.  I wanted to write this blog to help other people come up with ideas on how to raise money for their own treatment choices.  

Step 1: Start a GiveFoward Donation website.  GiveForward  You are welcome to have a look at mine to give you an idea of how to set one up. Sarah Buckley's Treatment Fund

Step 2: Brainstorm any and all connections you have to businesses and people with talents such as musicians, artists, and bakers.  Once you put together a list, then sort them by category:

•  Businesses- Ask these people for donations of products and/or gift certificates for a silent auction
• Musicians- Ask these people if they would be willing to play a benefit concert for you with the money raised going to your treatment fund.
• Artists- Ask these people to donate pieces of artwork for you to sell on Etsy (Check out my Etsy store for ideas- LymeMargaritas)
• Bakers- Ask these people if they would be willing to make some pies/desserts and host a Bake Sale for your fundraiser

Step 3: Time to clean out the closets and do some spring/fall cleaning.  Make a pile of everything you could sell (Clothes, Shoes, CD's, DVD's, Books, Video Games, Furniture, Collectibles, etc...)

• Clothes/Shoes- These items can be sold at various consignment shops in your town
• CDs/DVDs/Books- These items can be taken to a used bookstore that has a buy back  program.
• Video Games- These can be sold at places like Vintage Stock and Game Stop
• Furniture- This can be sold on Craigslist or in a yard sale
• Collectibles- These are best sold on Ebay
• Everything- Have a fundraising yard sale and ask your friends and family to donate items for you to sell!

Step 4: Host a Silent Auction with any donated items you receive.  Be sure you promote your event on Social Media sites such as Facebook and Twitter!  You can even place an ad in your local newspaper!

Most importantly, don't stress!  Let this be a fun adventure and be creative!  Share some of your fundraising ideas in the comments section so we can all benefit!

And here is my "Make Margaritas" inspiration for today:

 "We are always getting ready to live but never living." 

--Ralph Waldo Emerson

Follow up post to "Are We There Yet?"

I have been dreading posting this follow up because I do not want to come to grips with all the sadness.  But it is time to face reality, so here we go... *Deep Breath*

1. The "infuriating and out of control" situation I mentioned in my last post only became MORE infuriating and out of control.  After a long fight, my LLMD gave up the battle and handed over her medical license.  The insurance companies came after her and she had to do what was best for her family.  She is a BRILLIANT Lyme doctor!  People would travel from all over the world to be treated by her.  I am devastated!  There are so little Lyme Literate Doctors out there and the insurance companies are trying to make it so that there are NONE!  I wish I knew how to make this STOP! This is complete madness!

2. In other sad news, at my last appointment with my LLMD, I found out that my Babesia was NOT gone :(  In fact, I started having a flare up of severe symptoms again and had to restart all of my treatment again.  It's like I am back at step 1 and the past year was just a waste of time and money.  I have had to take baby steps getting back in to a treatment routine because I was so furious and just wanted to give up.  One of the things I hate most about this disease, is how I will improve greatly and take 5 steps forward, then I will have a setback and take 20 steps back.  The constant back and forth makes my already terrible anxiety go through the roof!!!  So many times I have gotten my hopes up, thinking I am getting better, just to have my dreams shattered and end up having to stay in bed for 5 days because I am so sick.

3. On a side note, I am getting my Master's in Human Services through an online University.  It allows me to have bad days and still be able to get my work done on time.  All I want is to help people.  I would love to somehow open up a treatment center for Lymie's and offer all kinds of therapies.  Have multiple Lyme Literate Practitioners under one roof.  A one stop shop for all things Lyme.  I dream of this, I yearn for this, I pray for this!  I bargain with God to heal me just so I can pay it forward and help others.  It keeps me up at night!  I do not understand why someone who has so much life experience and knowledge in chronic illness cannot just move on and help other people.  I feel like my life is being wasted.  But I am sure I am not alone in these feelings and that is why there is a thing called faith!  We have to believe that there is purpose to all this madness.  We have to hang on to the idea that good things come to those who wait.  So today, I will end with this very appropriate and sanity saving "Make Margaritas" inspiration:

Oh, right! I have an imaginary illness! I keep forgetting.

I know I am not alone when I say that I sometimes wish I had Cancer instead of Lyme Disease/ Babesia.  And for those of you that read my blog who do not have a tick-borne disease, you must be thinking, "That chick doesn't know what she is talking about!  Cancer is terrible!  Why would she wish for that???"  Let me try to explain... If I had Cancer, not only would my treatment be covered by insurance, but my disease would be accepted by society!!!  Do you understand how HUGE that is???  Cancer is supported by EVERYONE!  People host fundraisers, 5K/Marathons, there are celebrity endorsers, the community embraces you.  What do you get when you have Lyme Disease???  People shun you, doctors tell you it is all in your head, the CDC and IDSA do not believe it is a chronic condition and therefore treatment is not covered by insurance.  To put it bluntly, unless you have Lyme Disease and understand what it is like, NO ONE GIVES A SHIT ABOUT YOU!  You may think, "she is being a tad dramatic.  It can't really be that bad."  I encourage you to go to the Lyme Disease support groups and hear the THOUSANDS of stories of patients whose families have turned their backs on them because, "Lyme Disease is not that serious and we are just being lazy."  I wish I was making this up.  I wish this was not the God awful truth.  Lyme Disease IS  just as devastating as Cancer if not worse because we receive NO support!

So, why am I ranting about this today?  It's not like I was just diagnosed.  I know that hand I was dealt and I am taking it day by day trying my hardest to fight the good fight with a positive attitude.  Well, let's just say a "family member" was just diagnosed with Cancer.  Of course, I felt terrible and wanted to know how to help. What blew me away was how the "family" responded to her diagnosis.  They immediately set up a fundraising website for her, they are hosting silent auctions, they have had "classes" specifically to raise money in her honor, and the list goes on.  Where was this "family" when I needed them?  I had to set up my OWN fundraising page for myself.  And let me take this time to say that I am forever grateful to EVERYONE that helped me.  My point is, I am left to feel that my disease it not as important or a serious as Cancer when that is NOT the case.  In fact, I would not be surprised if she is cured of her Cancer long before I am ever cured of my Babesia.  Please do not take this post out of context, I am no way bashing or belittling people with Cancer.  I am simply trying to stress that Lyme and its co-infections should receive the same recognition and support.  And with that being said, I will end with my "Make Margaritas" inspiration for today: 

Are We There Yet???

 When things are infuriating and out of your control, you have two choices:

1. Give in to the fear and insanity, cry your eyes out, have a full blown panic attack, and then hide under your covers forever...

OR

2. When you are done with choice #1, (haha) you make the decision to take all that anger and let it motivate you to make a change.

I wish I could elaborate on my situation more, and hopefully in a future post I can, but just know I am done with choice #1.  I am praying that God leads me to the purpose behind this terrible situation so that I can help others.  If you find it in your heart, please join me in praying that I find the meaning in the madness.  Thank you!

On to better news, I saw my LLMD recently and she said my blood work was PERFECT!  This is the first time that my CO2 level was normal!!!  This means that I am no longer hypoxic!  I can definitely feel the difference.  We are still waiting on the results of my ECP test (Babesia level) but she said that the fact that my CO2 level is normal is a good indicator that my Babesia is either low or gone!  Oh how I pray that it is GONE!  But she said something very important in my appointment that I was glad that she said in front of my husband.  If it turns out that my Babesia is gone, it will still take 1-2 years for me to completely recover.  Babesia is a serious disease that has reeked havoc on my body for over a year.  Just like any other damage to your body, it takes time to for the body to heal.  This is a good reminder for me as I start to feel better that I need to take it easy and not push myself too hard.  When we have good days we often want to take advantage of that and push our bodies to the limit.  Then of course we pay for it for days afterwards.  Baby steps! 

If I am free of Babesia, I still have a ways to go to get my life back.  Right now I am focusing on getting my circadian rhythm back on the right track.  Being in the right sleep pattern is SO important!  I'll say it again...baby steps!  I won't deny that the path to recovery is LONG and painful, but there is a light at the end of the tunnel.

So, my "Make Margaritas" inspiration for today is:
"I'm not telling you it's going to be easy- I'm telling you it's going to be worth it." ~Art Williams

New Year Priorities

Well, Happy *belated* New Year, Lymies!  I hope the new year and colder temps are treating you well.  On this last day of January, I propose that we not make new year resolutions, but instead new year priorities!  Since I got married in September of last year, I completely abandoned my treatment protocol.  Shame on me...I know, I know.  And so now I am trying to pick up the pieces and get my life back on track.  I haven't taken Mepron in months and my glucose level is so outta whack that I am now pre-diabetic and can only drink fruit smoothies until I can get my glucose back under control.  Let's see, I lost my health insurance and have been playing the waiting game with trying to get Medicaid.  I am sure you can relate how incredibly frightening it is for someone with Lyme Disease to not have insurance!!!  

Anyway, so here is my plan. I have decided to stop having a pity party for myself!  Yes, it sucks that I have been battling Babesia for over a year now, and yes it sucks that I feel like I'm starting  my treatment over from scratch, but things could be much worse!  I am choosing to look at the positives.  Resolutions are made to be broken, so let's join together to make some priorities in our lives.

My New Year Priorities:
1. Eat Healthy and Get my Glucose Level under Control
2. Focus my Energies on Getting Well INSTEAD of Feeling Sorry for Myself
3. Get Back on my Treatment Plan even if it means Taking Baby Steps to Get There
4. Find the Positives in Each Day (even on my worst days)

What small new year priorities can you make?

And here is my New Year "Make Margaritas" inspiration for today....

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