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August 23, 2012

A Whole New Level of Awesomeness - I wrote a Lymerick

My Limerick, I mean Lymerick, to Vermox and My Treatment

Six pills over three days
To stop these critters in their dirty ways
Stomach cramping makes it hard to sleep
Toxins released causing me to weep
All symptoms increase with my malaise

Love how Vermox was designed to work
Destroying the outer body makes me smirk
No more controlling me and making me sick
Stupid this all stems back to a tick
Delaying my treatment success with overwork

Three diseases (Lyme, Babesia, Bartonella) and parasites invade 
Ingrained in my body this past decade
This treatments a marathon not a race
You critters are not welcome so give me some space
Doing all I can to combat your invade

Can't wait for the future when I will finally play
Excited to live life to the fullest each day
He will have me back as his wife
Able to focus on what we want in real life
Planning to celebrate like a field day

Ready to say goodbye to this hard long battle
And shift my attention to a baby with a rattle
I wish this disease and extra components on no one
Sitting home alone all day is really no fun


Thankful for my LLD (Lyme literate doctor) because he knows best
Then living so close to my Naturopath, I really am blessed
Western and Eastern medical theories complement so well
With all the toxic buildup my body can finally expel
I know this treatment is working because I've finally progressed

I'll take three awful days of stomach cramping
It's a great reminder the invaders are victims of stamping
Parasites dying and shriveling away
I hope they learned their lesson about overstay!
No visible finish-line, but I know it's coming (wish I could end this line [just pretend my poem finishes strong])




August 19, 2012

Sometimes I Don't Feel LIke A Human Anymore

Last night, I was doing my nightly routine of coffee enema, castor oil, full stomach meds followed a few hours later by empty stomach meds and my binding drink.  I had spent less time than normal on the floor in my bathroom allowing the coffee enema to pull out all the junk that had been collected through the day out of my body. Sometimes I feel more like a lab rat than an actual human.

It was around this time that my mind was FLOODED with awful thoughts. Specific thoughts. Things that are not healthy to be going through my brain. I came out of the bathroom totally confused and saw my hubby just hanging out.  Normally, this is totally cool and I'm glad he's relaxing because he works really hard and it's almost time for bed. But last night, it was like adding insult to injury when I saw him playing on his computer while I had just spent all this time trying to do my part to get rid of this disease and feel better.  I was extra nauseous and really scared by the constant thoughts bombarding my brain. I truly think it was an attack on my from Satan. The mastermind of all things evil.

Justin could tell something was different with me. He was concerned and he sat on the side of my bed holding my hand. He said EXACTLY WHAT I NEEDED TO HEAR: "We will get through this. Let's focus on getting through tonight." He walked me through some breathing exercises and gave me some medicine to help with my anxiety. He continued to hold my hand and just started praying for me. He thanked God for this situation, even though we don't understand it at all. He prayed that the thoughts would leave my brain. He prayed that there would be an end to all of this and that we would be able to manage the treatment until we were done.

This illness is not something that you can just buy off and it will go away. It is a super long and drawn out process with no right or wrong treatment, but more what will work to heal my body. I'm confident I have the best treatment team of doctors and medical professionals to help me make it to the other side. But don't get me wrong, it is hard. Some days/nights are harder than others.  I feel like I am running a race and no one knows exactly where the finish line will be.  Lyme, unfortunately has found itself at the core of a political and insurance scandal where people who research it can't or won't share with the rest of the medical community because they want to make money on what they discovered. No one in the medical community talks to each other so there is no standard cure for Chronic Lyme (what I have). It is so sad and frustrating.  Like, if I had any form of cancer there would be a direct plan and course of treatment and an expected ending date for the treatment protocol. For me, and my Chronic Lyme, I know there is and end but I can't tell if it's a month away or another year and a half.  That alone is frustrating.  So before I get all worked up again I just focus on what Justin told me...."Let's focus on getting through right now".
This tote is awesome. You can buy one by clicking  here.

Right now, I need to take some deep breaths and shut my exhausted eyes for just a little longer. Then I will try and start my day over again. There are some fun things I want to be part of, but I'm not sure I have enough spoons to do it all. If that last sentence made NO SENSE to you check out the Spoon Theory. It is a beautiful day outside and I'd really like to spend time with my family doing our Fantasy Football draft. I also really want to go to church tonight because making it at 9am didn't happen. :/

If you can, please pray for me today. Pray for me to have energy. Pray for the disturbing thoughts I had last night to be gone and forgotten. Pray that I can be okay in the moment and not feel like a complete failure because today is challenging for me. Pray for my husband. Above all pray for an attitude of gratitude regarding my treatment. And that I seek to praise God for all things-- good and bad.


August 17, 2012

My Life 647 Days into Treatment

I realized early this morning that it has been a very long time since I updated everyone about my day-to-day treatment.  I have had quite a few huge changes since I began my journey of fighting chronic Lyme 647 days ago (or 1 year, 9 months and 8 days). My weeks are full of appointments and staying on-track with my medication and detox regiment. Here is what a day in the life of me currently looks like (you can see my last blog post about my daily routine here): 

 6:00am  My alarm goes off to take my empty stomach medications. As quickly as I can stumble half awake to the fridge I grab my handful of pills and swallow them down. Then I promptly go back to sleep hoping I can beat the stomach ache from setting in.


9:00am   Wake up again and take another empty stomach medication. This one is a drink that is a binder. It's not horrible tasting, but it is a little gritty. The binder will go through my system binding anything loose to it and pulling it out of my body to be seen later in the toilet. The hope is that the binder will grab onto dead or almost dead parasites inside of me and take them out before they release toxins from dying.

 9:45am-ish Sometimes if I am awake at this time I will eat otherwise I will eat when I wake up. My morning meds are really rough on my gut but they are very important to me winning this fight so I am committed to taking them.  I'm sure you probably realized this, but if I eat too soon the binding medication will adhere to my food and not allow it to provide nutrition to my body.


12pm-ish I eat something for lunch.  I am dairy free, gluten limited, sugar limited which leaves me delicious options for food. :/ I try to always eat a fat, protein and a carb together.  Sometimes, depending on my nausea, this can be very complicated.  One of my go-to foods is celery with almond butter and raisins (my take on ants on a log from when I was younger). Another go-to for me is my afternoon dairy-free smoothie.  My smoothie includes a protein powder, nutritional food in powder form to help my leaky gut, vitamin C, lactose-free Kefir (a probiotics which is a must with all the meds I take), some green veggies (spinach is great because it is mild in taste and avocado is another favorite to add to smoothies too for the healthy fat and it adds a smooth creaminess to the smoothie in addition to the nutritional benefits of vegetables) and a little bit of frozen fruit to help the taste and texture.  This nutritional smoothie looks pretty good but I'm pretty sure I will not *love* smoothies again for the rest of my life just because I have to have them everyday to get all my medications. The fun factor no longer exists with smoothies for me. :( They have kinda been ruined for me, but it's a necessity and I'm committed. After I eat/drink something and my belly is full I take my lunch pills (my lunch meds include another binder that is safe to take with food)


1:00pm Usually my late mornings and early afternoons are full of appointments. I have physical therapy twice each week, Biomodulator and ionic foot baths twice each week, lymphatic massage on time each week, and regular appointments with my Lyme specialist, Lyme naturalpath doctor, primary care doctor and I am looking to add on a cardiac specialist to monitor my heart depending on the results of my echocardiogram next month. Recently, I was diagnosed with borderline sleep apnea so that may come with an additional doctor as well. So far, all I know is I get to add a super cool oxygen device to my house to use while I sleep! Again, I am adding to my personal hospital in my small condo. I currently have my shower chair, IV pole, Purative water system (I now have the best water ever and I'm really good at sharing!), wheelchair, oxygen machine on the way...If only my far-infrared sauna would fit in here! 


Oh, if I don't have any appointments this is the time where I will spend some quality time with my husband or friends. On a rough day I will spend this time in bed.


4:00pm After my appointments/hanging out  for the day I am in desperate need for a nap. This usually happens around 4 for an hour or two.  My hours of sleep required for me to function are decreasing which is super cool too! At the beginning of my treatment I needed about 18 hours of sleep each day to function.  Now I am down to roughly 12-15 hours each day!


7:00pm. Head upstairs to have a nice healthy dinner with my in-laws and talk about their days at work. It's really nice for me to socialize with them over dinner because I love the hospital they both work for and most days they are so excited about things going on at the hospital.  I'm pretty sure one day I will work there again and that makes me very happy. In addition to cooking me dinner, they spoil Diego by feeding him cheese, salmon, chicken or whatever.  Even if I don't have dinner with them on a rare occasion they will still expect to see Diego so they can spend time and play with him. My in-laws (Diego's Grandma and Grandpa) love spoiling Diego with food and making him do tricks. Diego loves it too and if we have not left the condo by 7:04pm to head upstairs Diego is staring at me and making little noises because he KNOWS it's time to go upstairs. I'm still so impressed that he knows what time it is! He cracks me up. 



9:00pm "Drive home" which actually isn't driving at all it's walking down the hall to the elevator and getting off on my floor.  As I leave my in-laws always yell "Drive safe!" which cracks me up because it's such a short journey home, but my night is not over. It is detox time.


9:05pm I start my night off by drinking another binding medication on an empty stomach then I prep my coffee for my coffee enema. I also prep my water bottles of homeopathic drops to drink throughout the next day.  It involves about 20 different drops that each help to build up my body and detox it. One of my favorite items that goes into each water bottle is Synerplex.  It really helps me with electrolytes and keeping hydrated. I am still doing IV drip bags for hydration but not nearly as often. Every night, while I am taking all of this binding medication, I do a coffee enema to pull everything out that is still lingering in my body. This is a long process that involves me making a make-shift bed on the floor in the bathroom. I set up the iPad with a movie or TV show and roll over every 10 minutes or so. I usually spend about 1.5-2 hours for this whole process. It's not glamorous and I will be so happy when I don't have to do them any more but the coffee enemas are a great detox and really help me to feel better. After the enema, I shower and lather my body in a customized Ayurveda oil aka Argabanga oil made specifically for me.  The oil is absorbed by my skin and helps my lymph to turn to sludge and continue to flush everything out.  Often times I don't feel safe to do this whole process alone because it is such a good detox and on these rare occasions, when Justin is working and I don't feel well, my sister, Molly has stepped up and comes over to monitor me.  We yell through the bathroom door about our lives and each time I am reminded at how awesome my family is, especially my sister Molly.


11:30pm Another thing I do nightly is my Castor oil pack placed on my entire belly and lower back. Now I am REALLY exhausted. My body has been fully detoxed and I am ready to sweat out more toxins during my sleep.  I try to keep sweating as much as possible to give all this crap in my body every opportunity to get out as possible! I do remember to take my empty stomach medications again and then fall asleep with the castor oil pack on.  Then, I wake up at 2am or so. I simply remove the layers of castor oil, the heating pads and plastic from my mid section, wipe off the excess oil then crawl back into bed.  



Starting later today I will be doing another IV antibiotic and adding it into this equation. In the last week I have had three doctors appointments and everyone agrees that I am slow but surely getting better! My crazy treatment is working!!! I still have no timeline or answers to when I will be "all better", but I am finally moving forward instead of being stagnant in my treatment.  My body wants to get better and is fighting hard to get rid of the disease.  One way I know this is I did a brain toxicity test which three months ago my brain measured lots of toxicity. Last week I did the same test and it showed some toxicity, but it was low enough to be negative to toxicity levels!!! This measure may move up and down a bit but I was so stoked to see that result!!


My doctors have even been talking to me about doing the hyperbaric chambers (finally!) and a few other things that proves how far along I've come!  By no means is the fight over, but I am so happy to be moving forward in my treatment.  Yesterday, I got the best text message/phone call ever which is a huge stress reliever for me....more about this later.  ;)

So that's my life right now. I am happy to report that even though it is long and tedious I know things are working which is so encouraging! Who knows maybe in the next 647 days I will be cured* from Lyme and finally be pregnant :)

*My understanding is that the jury is still out if someone can actually be cured from Lyme because I can relapse months or years later.  So I guess the more appropriate term is I will be in remission from Lyme.

I hope everyone has a wonderful day! I love you all and appreciate you reading my blog and trying to gain more understanding about this complicated disease. If anyone is interested on writing a guest blog I'd love to feature you on my site just let me know!

August 11, 2012

All the things I want Molly to know the day of her wedding.


The happy couple. 
Today, Molly, one of my sisters is getting married.  She is the one that is two years younger than me and we have the same mom and dad.  She used to annoy the heck out of me growing up but I do have some funny memories from our childhood.  Tonight I am ironically having a hard time sleeping because I'm so nervous I won't get enough sleep to have energy to last me all day. I'm a mess, so I decided to share with you some of the things I have learned to love about Molly.

1. Molly doesn't hold grudges. True story, I pushed her off the top of a slide so I could go down it first. This resulted in a broken arm for her.  Just a few days previous my mom had picked her up and popped out her arm socket which called for another ER trip.  My family always jokes that CPS should have probably come out, but thank God they didn't. The doctor at ER understood our misfortunate timing and knew Molly wasn't being abused on purpose. She doesn't hold it against us at all!

2. Molly was a little trickster.  She could lie like no one else which helped her get away with a lot of crap (of course I got upset every time because I suck at lying). But Mol has a skill with using the guilt-trip and negotiating skills to her advantage. I love when I am on the receiving end...not so much when I'm the one she's bargaining with because I usually lose!

3. She was sneaky. Molly loved candy and one time I found candy wrappers in her pillowcase! Molly was sneaky enough to score some candy when she was little and hid the evidence. I'm sure it was a good month or so before anyone found out her secret hiding spot.

4. Molly had the best imagination and could make friends with anyone in .02 seconds. I was so jealous of her ability to be best friends with anyone anywhere we went. She still does this. If you've met Mol you know what I mean. She likes everyone and knows how to be a good friend. She uses her imagination these days to come up with quirky things in her life....like having giant metal chickens at the wedding. Why? Because it's funny!  What are her programs for the ceremony? Paper airplanes of course! There is nothing traditional about this girl she's creative and fun!

5. Molly has many talents. She could put together a talent show with all her friends with choreographed dances of pure amazingness. I haven't seen any in recent years, but growing up there were hundreds of talent shows where Molly and her friends would put on a great show.

6. Molly is brilliant. Smart doesn't even describe her. Brilliant is much better. I'm pretty sure in the next ten years Molly will be Dr. Molly Bernard....Dr. of psychology, not a doctor you would want to take care of you if you are bleeding or something. Blood, guts and bodily fluids make her so squeamish, but she has improved so much in the last year with my Lyme treatment and taking care of my Granddad before he passed away.

7. She knows how to have a good time...all the time. It's impressive and I love it! I guess this goes back to her fun imagination.

8. She has boundaries and I totally respect that. She doesn't let people walk all over her.

9. She is the best at "I" statements. And she can use it in any conversation completely naturally. She even is teaching little kids this skill now. I feel lucky that my annoying sister has grown and blossomed into one of my best friends. The only downside to this is she will tell you exactly how she is feeling which isn't always what you want to hear, but it's for the best.

10. Molly has road rage. It's hilarious. She knows it too and laughs at herself.

Basically, I love my sister. In 16.5 hours Molly will be a Bernard!  I'm happy she's found someone to love her and spoil her by buying her flowers and other cute things like that. I know Molly and Brandon love each other and I'm excited for her to move up in the alphabet, from Rice to Bernard.  I'm not sure why this is a big deal to me but in school when your name is called now she'll be one of the first instead of on of the last. Their phrase for tomorrows wedding is Forever Starts Here and I totally agree.

Molly,
I know we spoke last night and you are all about me just doing what I need to do to take care of myself to get better, but I just want you to know how much I love you and am excited for you. I promise to do my best and give it all I have tomorrow.  Not sure if that means 5 minutes for 15 hours.  I'm sorry this treatment is so unpredictable and it puts me in this place that breaks my heart.  I don't want to miss any of the fun! I have high expectations of who I want to be for you at your wedding, but it is not realistic with how little energy my body has. I want to be there for you and your every minute to celebrate your marriage. Please know, I will be there tomorrow and the rest of our lives to share in the good and bad times. I have four years of marriage under my belt and I am happy to pass on my wisdom or be a sounding board for you.I love you.  I have been planning and anticipating to go all-out for tomorrow. I pray it is a good day for me.  But most of all, I hope it is a great day for you.  You have arranged a beautiful wedding with delicious food, great drinks, the best DJ EVER, and the tent of your wedding dreams. Have fun. Let all the details and stress go (kinda like when we were little...throw the grumpies out the window) and enjoy every second of time with dad on the boat, getting ready, doing your first site pictures, the ceremony, and dancing it up with Rob's music.  I can't wait to see you in both your ceremony dress and your party dress ready to boogie down!! Oh, and make sure to eat! Uncle Ray is BBQing up a feast for you so make sure you take a moment to enjoy every bite ;)

P.S. if anyone reading this will be at the wedding tomorrow, please bring a camcorder so her special day will be videoed. It doesn't have to be anything fancy, just something. I hope to see you all there. This is really important to me (and I know it will be important for her and BB down the road) but I wasn't able to make it happen (so I am reaching out to you). 

August 6, 2012

All In One Place - Lyme in the Media (Books, TV, Movies, Documentaries)

This week I have spent a lot of time researching movies and books that talk about Lyme Disease.  There are so many that I'd never heard of so I thought I'd compile them all here with links so you can check them out too.  If I'm missing any that you know of PLEASE leave a comment so my list can grow and can be even more complete. Thanks!

Books:

Natures Dirty NeedleNature's Dirty Needle teaches the reader about Chronic Lyme Disease through the stories of people who live with it. Through the stories and the basic information about CLD, the reader is given the knowledge to find the help they or someone they know and love needs. People will also learn about the different infections and get an idea of what it takes to heal.

Out of the WoodsAt the peak of her career, classical homeopath and health care columnist Katina Makris was stricken with a mysterious “flu.” Only after five years of torment—two completely bedridden—and devastating blows to her professional and family life was Katina’s illness finally diagnosed as Lyme Disease. But diagnosis was only the beginning of her journey toward healing.
Twenty thousand cases of Lyme Disease are reported annually, with thousands more still undiagnosed or mistreated due to faulty testing protocols. This infectious disease can create gaping physical, emotional, and spiritual wounds, leaving tens of thousands of people in progressive states of illness, collapse, and financial ruin. Yet, Katina Makris’ vivid story offers practical information for diagnosing and treating the bacterial invasion, as well as powerful guidance for mending the broken spirit. Rooted in personal recovery experience, a deep understanding of alternative medicine, and a poetic connection to nature, Out of the Woodstranscends the boundaries of any one disease to reaffirm the power of hope for anyone grappling with life-shattering chronic illness.

The Tick SlayerThe Tick Slayer, is about US track athlete, Perry Fields’ journey back to competition from Lyme disease including multiple autoimmune diseases.  Her debilitating condition made her quit the sport that she had participated in since childhood, including missing the 2008 Olympic Trials.
The book is autobiographical recant of her amazing journey back, with medical details of the treatments and how she dealt with the health care system.  It will empower every reader, no matter their condition, although originally written for Lyme disease, many people with autoimmune disorders, including cancer, will find many nuggets of invaluable information on their current condition, in a story that is inspiring and motivating. Includes resources, treatment options & experiences, as well as guest authors in the medical field explaining new technology that can save lives.
Cure Unknown: Inside the Lyme Epidemic: A groundbreaking and controversial narrative investigation into the science, history, medical politics, and patient experience of Lyme disease told by a science journalist whose entire family contracted the disease.
Pamela Weintraub paints a nuanced picture of the intense controversy and crippling uncertainty surrounding Lyme disease and sheds light on one of the angriest medical disputes raging today.  She also reveals her personal odyssey through the land of Lyme after she, her husband and their two sons became seriously ill with the disease beginning in the 1990s. 
From the microbe causing the infection and the definition of the disease, to the length and type of treatment and the kind of practitioner needed, Lyme is a hotbed of contention. With a CDC-estimated 200,000-plus new cases of Lyme disease a year, it has surpassed both AIDS and TB as the fastest-spreading infectious disease in the U.S. Yet alarmingly, in many cases, because the disease often eludes blood tests and not all patients exhibit the classic "bulls-eye" rash and swollen joints, doctors are woefully unable or unwilling to diagnose Lyme. When that happens, once-treatable infections become chronic, inexorably disseminating to cause disabling conditions that may never be cured. 
Weintraub reveals why the Lyme epidemic has been allowed to explode, why patients are dismissed, and what can be done to raise awareness in the medical community and find a cure. The most comprehensive book ever written about the past, present and future of Lyme disease, this exposes the ticking clock of a raging epidemic.

The Widening Circle: A Lyme Disease Pioneer Tells Her StoryThe first person to focus attention on Lyme disease, Polly Murray tells the harrowing story of her early efforts to identify what was making her family so sick-- and their battle with the illness over a twenty-year period.

In Lyme, Connecticut, in 1965, Polly Murray, her husband, and their four children led an almost picture-perfect life. But Polly began to be plagued by mysterious ailments, and as the rest of her family started to experience similar symptoms, she knew something was terribly wrong. When doctor after doctor failed to explain what was happening to them, Polly was forced to confront disbelief, lack of caring, and, eventually, apathy on the part of the medical establishment, all the while suffering herself. Her personal investigation into the cause of her family's illness, which became as passionate as a detective's, eventually initiated a medical investigation that led to the 1982 discovery by Dr. Willy Burgdorfer of the dangerous bacteria that causes Lyme disease. Polly tells her tale from the viewpoint of a patient who was a pioneer in the medical recognition of Lyme disease. Lyme disease remains a poorly diagnosed, controversial illness. Lyme victims and their families can take hope from Polly's courageous and inspiring story.

Movies / Documentaries /TV Shows:

-Under the Eightball (trailer)In 1951 at Fort Detrick, Maryland, construction crews built a hollow metal sphere four stories high. Inside germ weapons were to be exploded, creating mists of infectious aerosols for testing on animals....and people. Employees called it the eight ball. In their eighteen month long journey Grey and Russell travel the country in search of answers and interview top experts in the world of Lyme and Tick-Borne Diseases. Under the Eight ball includes live footage, historical documents, original animation and archival military footage. Directed by Timothy Grey and Breanne Russell

-Under Our Skin (available on netflix instant streaming and hulu plus): In the 1970s, a mysterious and deadly illness began infecting children in a small town in Connecticut. Today it's a global epidemic. A real-life thriller, this shocking festival hit exposes the controversy surrounding Lyme disease. Following the stories of individuals fighting for their lives, director Andy Abrahams Wilson reveals with beauty and horror a natural world out of balance and a human nature all too willing to put profits before patients.

-Lymelife (available on hulu plus and amazon instant video): Scott Bartlett (Rory Culkin) is a typical 15-year-old boy growing up in late-1970s Long Island. His suburban existence is primarily marked by a nerdy interest in Star Wars, fending off bullies at high school, his longtime crush on neighbor/best friend Adrianna Bragg (Emma Roberts), and navigating the dysfunctional terrain of his parents' rocky marriage-all against the paranoid backdrop of a Lyme disease outbreak, which has freaked out Scott's high-strung mother, Brenda (Jill Hennessy), and has already claimed Adrianna's father, Charlie (Timothy Hutton), as a victim. With Charlie out of work due to his illness, Adrianna's mother, Melissa (Cynthia Nixon), takes a job working for Scott's father, Mickey (Alec Baldwin), a successful real-estate developer, and soon embarks on a messy affair. When eldest son Jimmy (Kieran Culkin) returns from army training and confronts his father about Mickey's less-than-discreet adultery, both families are forever changed by the devastating consequences.

-AwakeningsThe victims of an encephalitis epidemic many years ago have been catatonic ever since, but now a new drug offers the prospect of reviving them.

-ABC's 20/20 Friday, May 18, 2012 Lyme Disease feature 

-Dr. Phil's feature of Lyme Disease and 
-Dr. Phil's after the show interview THIS IS KEY!

-Discovery News Video: Animals: Ticks: Bloodsucking Ninjas of Summer This video has some good information but is incorrect about always looking for the bullseye rash. The rash is not a good indicator as so few people actually get one or see it. PLEASE if you get flu like symptoms go to the doctor and get on a few weeks of antibiotics!

-Monsters Inside of Me - Babesia (one of my co-infections with the Lyme and Bartonella)

I hope you can use this page as a resource to see the many faces of Lyme.  I am working on watching and reading many of these too.  If you are a Lymie, I encourage you not to consume yourself with this information. You need to give you mind and body a break from being 100% Lyme involved. Don't let this disease be your identity.  It is only a something you a fighting to get through. I constantly have to remind myself of this same thing. 

I love this quote as it applies to everything in life: "Life is 10% of what happens to you and 90% what you make of it" -Charles Swindoll