A Lyme Disease Blog Sharing Support & Awareness

Things I Love

7/27/2017

I love the smell of cinnamon rolls on a Sunday morning, and the sound of paws on hardwood floor.
I love stargazer lilies, the smell of popcorn, and the first sip of a vanilla latte.
I love the feeling of crawling into bed with fresh sheets, colorful sunsets, and when you can notice that the seasons are changing.
I love the feeling of an ocean breeze, my dogs eyes, old pictures, and peacock feathers.
I love animal footprints in the snow, discovering old letters, and genuine laughs.
I love ice cold tea and steaming hot coffee; I love a bouquet of Mylar balloons.
I love the feeling of discovering a new audiobook, foreign coins, antique jewelry, and fluffy clouds on a Spring day.
I love a dog's wagging tail, a cat's rough tongue, sprinkles, and the sand between my toes.
I love my mom's laugh, and my dad's jokes; I love my brother's smile when he pets a dog.
I love stargazing in the night sky, stained glass cathedrals, the feeling of silk, and giving a gift.
I love receiving a handwritten note, sparklers, a basket of shiny ornaments, and the smell of a fresh cut Christmas tree.
I love watching people's eyes when they make a wish, blue topaz, a thrilling mystery, and fortune cookies.
I love the smell of tennis balls, the crinkle of a new bible, fireworks, and escaping into a good book.
I love stories from my parent's childhood, colorful embroidery, waffle cones, and the gentle sigh of my dog when she's content.
I love double rainbows after a heavy rainstorm, fleece on cold skin, and otters who hold hands when they swim.

But most of all, I love my family, I love my friends. I love my life.

Xoxo,
Christina

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Let's Talk About Crohn's Disease.. And What This Diagnosis Means

6/6/2017

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I wrote this post in early May, when I got my news. However, I didn't post it then because I didn't want this to take attention away from Lyme Awareness Month. Since it's writing some things have changed; I continued more testing, more investigation & will write a follow up soon as my body allows.

Well, here we are. It's been a couple of days since I finally got my answer, and yet it all still feels really fresh. I had hoped a few days time would give me some clarity to write this post, but right now I'm not there yet. I find myself bouncing around between a feeling of relief and understanding & back to a feeling of frustration and anger. At first I thought I would hold off on writing this post until the dust settled, but truthfully I'm not sure when that will be. I can't rush my feelings, but I also don't want to. I don't want to write some kind of clean and polished post which is void of my honest feelings. So, here we are. If you need to get caught up, I blogged about new symptoms I began having HERE and HERE.

I kind of chuckled when I sat down at my computer, because I remember writing my last post a week ago. When I was typing it out I distinctly remember myself omitting a line at the end where I said, "I just really hope it's not this 'one' disease." At the time I deleted it because I thought I might somehow jinx myself by putting it out there. But looking back now I realize that a part of my intuition knew it would be the answer, and I deleted it out of a sense of denial. It takes me a couple of days to write a post (I typically do it in segments), so by the time I was hitting "Post" a few test results had came in. As with most test results, when you look at them as a stand alone number it doesn't mean too much. But when you start combining it with other results the picture begins to form. I was aware that it was just as likely to be something minor like an unknown allergy as it was to be something more sinister. The tables could turn either direction, and I refused to believe it could be anything BUT just some simple little allergy.

There was just one pending test which stood between myself & this make believe land I was living in. I really truly believed it would come back negative & I could go on my merry little way and begin the gamut of allergy testing. It's almost like I actually thought if I believed it enough then it would happen. As if I could will my ideal future into existence. Quick spoiler alert, it turns out I could not.

The results came in, and right there in black and white were the words: Crohn's Disease. My first thought was "no way, no way, there is no way." But soon reality settled in and I realized that it made so much sense. It was indisputable; every single test result pointed in that direction and every single symptom fit. All my pain finally made sense. The severe stomach pain, the cramping, nausea, fatigue, loss of appetite, sensitivity to most all food, etc. Crohn's causes widespread inflammation (and ulcerations) which can affect your entire GI tract from the mouth to the colon, as well as the eyes, joints & skin. I had began having some eye ulcers & tongue/mouth ulcers a while ago, and now those weird symptoms finally had a home as well.

Crohn's Disease is chronic inflammatory bowel disease (IBD) characterized by inflammation of the GI tract. It is believed to be autoimmune in nature, where the mucus membranes essentially attack themselves. There is no "cure," and it varies between periods when disease is active or flaring, and when it is in remission (less/fewer symptoms). Crohn's varies person to person, and flares can get very serious if not handled properly. It can bring fun things like bowel obstruction, fistulas, fissures, malnutrition, and toxic megacolon among many other things. So keeping a keen eye on the body during a flare, and reducing the inflammation as soon as possible is very important. Also, both IBD's (Crohn's and Ulcerative Colitis) increase the chance of colon cancer by a great deal, so from now on I will need to be proactive about routine testing for that.

Alright, so now all the fun facts are out of the way, how do I feel? Well, where to begin.. I feel partially relieved. I was shooting in the dark for so long without an answer to my pain. I knew in my gut that this was something different.. this was something new. Getting an answer has allowed me to do things like completely re-haul my diet. Those with Crohn's have set diets during a flare (typically low residue) and then another diet they follow rather continuously to prevent a flare and keep the stomach relatively calm. So having this information now gives me the ability to hope for less painful meals & that gives me some peace. Getting answers has also allowed me to start reading as much as I can about Crohn's and has given me the hope of getting things under control.

On the flip side I feel overwhelmed. This is a whole new disease which I have to come to terms with. It's a whole new beast I have to work my way through to understand. Everything about this is brand new to me. A few years ago I was very green around the gills about Lyme Disease information, but through life experiences and research I was able to learn a lot. With Crohn's I am at the starting line. I feel like I hardly know anything, and it will take a lot of trial and error to find what does or doesn't work for my body. I also feel angry. I guess anger has been my primary emotion, and it's just this feeling of, "Seriously?!" Those of you following along know how HARD I have fought for my health to reclaim it from the grips of Lyme Disease. You also know that last year I got some great news about my bacterial loads & progress I made there. We went through mold remediation & I saw the light at the end of the tunnel. The specialized visual/brain therapy was all set to go, and I thought this was finally soon going to be "it" for me. I just so desperately wanted to be rid of all that plagued me, and on the path to getting pieces of my life back. I have struggled with IBS from 10+ years, and when things got more severe with my stomach in December I thought I could breeze through it and resume normalcy soon enough. It just never occurred to me that what I thought was routine IBS was actually Crohn's forming in my body. To be honest, this has likely been a part of my life for longer than I realized, but December was a particularly stressful time in my life which brought about the flare.

So what now? Well, traditional Crohn's treatment calls for steroids and biologics, both of which are HUGE no no's for those with Lyme Disease. They bring down the immune system and create the perfect environment for the Lyme (and other infectious bacteria) to come back out and relapse. It is imperative that I keep my immune function up in the places where it needs to stay up, so that traditional route will not be for me. Crohn's and Lyme Disease are on polar opposite ends of the treatment approach spectrum and that complicates matters. It will take work with Doctors & trial and error to find the right direction to go. I'm sure I will be able to navigate it, but right now it feels so much bigger than me.

And lastly, the question I'm sure many people are asking (because I know I did), how did this happen? The exact cause of Crohn's is unknown, but its a combination of genetics, the immune system & the environment. I know now (through testing) that I do indeed have the genetics for Crohn's. Check. I also know that Lyme Disease has caused disastrous turmoil to my immune system, creating the dysfunction, which is item number 2 on the list, so.. Check. And I have been in a state of almost constant stress, so my environment was prime for the picking. Check.

When I look at my family tree everyone is honestly SO healthy. Like, they could not be a healthier group of people. I am the only odd man out from the whole bunch. No close relatives on either side of my parents have an IBD like Crohn's. So genetics alone would not have activated this disease. However, what I did have (which none of my other ancestors or family had) is Lyme Disease. Lyme Disease eviscerates the immune system, and demolishes every piece of regularity it has. Lyme is known to create so many autoimmune conditions due to it's ability to get the immune system to improperly attack itself. Since my Lyme diagnosis I have became allergic to almost everything; foods, chemicals, you name it. The wrong shampoo gives me a migraine & inhaling the wrong chemical sends my heart into a tachycardia attack. My immune system has been dysfunctional for a long time due to Lyme, and in this case it coupled with my genetics, my environment, and created Crohn's. Bing, bang, boom.

I guess for now, this is all I have to say on the topic. I'm still digesting it and navigating through the complex web of information. I know that there is a reason for everything in life. I know God has a purpose for this in some way I can't yet see. But right now that does not bring me comfort, because I'm not to that stage just yet. On a rational level I can understand that, but on an emotional level I'm still lagging. However, I do feel unbelievably thankful to have gotten an answer now vs a few months down the road. This diagnosis also came just in time for Lyme Disease Awareness month, because boy oh boy, if there ever was a time that I loathed Lyme disease most, it would be now. If there was ever a time that I was motivated to spare even just 1 person from going through this, it would be now. The longer the Lyme bacteria goes unchecked before being properly diagnosed (5 years for myself), the more time it has to create deep destruction. Some of which won't even rear its ugly head until years later when you least expect it. My passion to stop this madness and advocate for a real lasting cure has been reignited 100 times over.

Heres the thing many of you know about me by now: I don't take no for an answer. I refuse to be pulled into this trap where I talk myself into believing I'm stuck with Crohn's for life. In the little time I've had to process this I've read about so many people in remission for years, living free and clear of Crohn's symptoms for 5,10,15+ years. Mark my words, I will be one of those people. I'm determined to reverse this process; to find a way to get to the root cause.

I will keep this blog updated as I navigate the world of Crohn's and try to climb out of the current flare which I am currently in. I will have further testing to try and tweak things in my diet/environment which might be contributing to the flare, so there is still lots of work to be done! I might be less responsive in the coming month or two, so if there's a lag in replying to emails etc then this is why. Thank you to those of you following along, and thank you for all the prayers. I feel them on every level.

xoxo,
Christina

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Lyme Disease Awareness Month Summary & a GIVEAWAY!

6/4/2017

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As Lyme Disease Awareness Month comes to a close I wanted to compile all the various things I shared across social media in one place. There were so many wonderful things going on all over to raise awareness, and as the voices grow each year I feel more confident that together we can enact change.

Lyme Loonies: Daily Cartoons & Illustrations

During May I tweeted daily cartoons and illustrations that speak to what Lyme Disease is, and how it affects patients (see thread). These were all illustrations from the hilarious and incredibly talented cartoonist David Skidmore. I met David many years ago and we became fast friends. I adored his illustrations from their inception, and I loved watching them go from a few cartoons on twitter to becoming a full book titled "Lyme Loonies." The title is a tongue in cheek joke of what one IDSA Doctor called Lyme patients. His book has been a massive hit, and if you don't own it yet I sincerely encourage you to pick up a copy on Amazon HERE. You can follow David's work on his Facebook page, HERE. Below is a slideshow of the illustrations I shared on twitter, and they were all taken from his book Lyme Loonies, which is chock full of hilarious and spot on cartoons. Thank you to David for allowing me to showcase his talent during the month of May!

Lyme Disease Challenge

More than 300,000 people will contract Lyme Disease each year, and yet the common two tier testing methods (ELISA & Western Blot) are less than 50% accurate. We desperately need proper testing to stop this epidemic from growing. I took the Lyme Challenge! If anyone else did the Lyme challenge I would LOVE to see it! Please leave a link to your post in the comment section below :)

Giveaway!

As May comes to a close I wanted to do a little giveaway for everyone who has been with me, following along and sharing this journey. So, I put together a prize pack (worth $130), and you can enter to win below! The contest is open June 1st-15th (2017). The winner will be announced here & also will be contacted via email for their mailing address. This is only open to U.S participants.

LymeDisease.Org Billboard

For Lyme Disease Awareness Month I partnered up with LymeDisease.Org for their billboard campaign. This billboard ran during May in Kentucky & was hopefully a useful tool in informing the public about Lyme Disease on a larger scale. Thank you so much to LymeDisease.Org!

If you did any kind of Advocacy during May, whether its the Lyme Challenge, a blog post, interview, photo etc I would genuinely LOVE to see it. Please do share a link in the comment section below so myself, and others reading will all be able to see it!

xoxo,
Christina

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Take the Lyme Disease Quiz!

5/3/2017

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For Lyme Disease Awareness Month I created a quiz which you can take yourself & share that tests general knowledge about Lyme Disease. It's both interactive & informative, so put your smarts to the test and take it below!

If you want to take the quiz in a separate window, or have the ability to share a direct link to the quiz, you can find that HERE

Happy Lyme Disease Awareness month to all!

xoxo,
Christina

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The Chronicles of Tummy Troubles: Why Does It Take So Long To Get Answers?

4/26/2017

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I'm going to do things a bit differently for this post. I really want to highlight just how long it takes in this medical system to get an issue/new symptom resolved. With turn around time, wait times, and appointments to discuss next steps, it can (and usually does) take months to resolve a new issue. So, for this purpose my post will be an update, however it will be done in Chronological order. I will breeze through Dec/Jan/Feb because I have a whole detailed post on that here, but for the rest I will be more specific.

December: Mid December I begin to get a new pain in my stomach. At first it comes and goes, and often my entire stomach hurts. I brush this off as a transient symptom, and try to trudge through.

January: Things during this month only amplify. The pain becomes much more severe and much more difficult to predict or control. It's all complicated because I find I am fighting C.Diff, so a lot of the pain gets pawned off as being placed under the column of "probably from C. Diff." I knew however that there had to be more to it. Often it was hard to point to just one area of pain, because so many things hurt in so many different ways. I have had C.Diff in the past, and it's never hurt quite like this before. This felt like a very new thing to me.

February: Around this time I have blood testing done & it seems to look like some of the pain is due to Sphincter of Oddi dysfunction. This again is something I had dealt with in the past on a few occasions since I no longer have a gallbladder. In a way it felt familiar but, this time it was SO much more severe, and the location of the pain epi-center moved. I began to eat a liquid diet, and then a low fat diet which wouldn't trigger the attacks. This however did not seem to be the smoking gun. At the end of February I had an ultrasound done. The ultrasound was inconclusive. The only thing it showed was a more dilated common bile duct. This can be larger when you have Sphincter of Oddi, or have a removed gallbladder, so while it answered some suspicions it did not really give a solid answer. I did not quite fit into the box of this being primarily SOD, or just SOD.

March: I know how absurd this can sound to an outsider reading this post. How hard is it for me to point to a source of pain and figure it out? I ask myself the same thing all the time, but it simply is not that easy. I had (have) pain absolutely everywhere (remember C.Diff). Then I had an epicenter of pain which covered a quadrant, and it was large enough that I could not tell where it was coming from: my pancreas, my large intestine (transverse), my small intestine, or my stomach. I have a very tiny frame, and it is all packed in there. Often times it felt like multiple things were spasming or hurting at once. On any given day my "guess" of what was hurting would change. I absolutely did not know, and guessing was just driving me mad.

So, finally, around the edge of March I was approved for an abdominal X-Ray. However, after the X-Ray it took some time to get the proper radiologist to read it and give his report. I would say there was about 10 days while I was waiting to get some answers. This was probably the most helpful scan of them all, because it visibly showed three issues in the area where I had my most pain. The most notable takeaways were that a portion of my transverse colon was tightly spasming, not only causing pain but also not allowing things to move through that area properly. A little bit below that was an area in my small intestine which looked to show some bowel wall thickening. So, what the heck is going on? I mean, I got some answers, but the X-Ray can only show so much, and a more detailed scan was needed to find the cause and link

April: It's now April. I am still in a lot of pain, my large intestine feels inflamed and raw almost 24/7, and with each passing week/month I can eat less and less food. Eating too much solid food too many days in a row will bring pain, because once it reaches that tight portion of my large intestine it has difficulty passing through. So I begin to alternate liquid diets in between actual food. Because of this I often feel like I am starving. Also, not only has solid food become problematic, but a lot of my usual safe foods are causing me extreme pain. I would eat what should be an okay food, only to have about 2 days of stomach pain in so severe I can hardly move. It's getting more important than ever to get answers to rule out something more sinister. At this point I am not against exploratory surgery because the pain is that unpredictable and that bad.

Finally, we move on to the next step, which is a CT scan. Due to my MCS I am allergic to the contrast solution, so I received an abdominal CT without contrast. We were aware that this might prove to be less than ideal without contrast, but the plan was to start here and repeat with contrast (and steroids) if necessary. I got the CT scan done, and surprise surprise, it was inconclusive. The lack of contrast not being able to highlight certain areas made a set diagnosis impossible.

We are now almost to May, and we have to change directions a bit. All of these tests I have had ran (many which I did not even list) are very expensive. Insurance is not only slow, but also notorious for denying claims. Due to financial costs another CT is not in the cards. For now it is on the back burner as we start to pursue answers from a different avenue. Although still extremely costly, we began with a laundry list of blood work, specialized panels and cultures, as well as CSA's from a few different companies. A large portion of this is out of pocket, and just to give an example the CDSA 2.0 test is $700 out of pocket, the Geneva Labs CSA with Parasitology is $500 out of pocket, my MRT intolerance test was $700 out of pocket, and the Array 10 is $1,300. Out of pocket... all of it. I know I have said this before but it is legitimately survival of those who can afford it. And in my case I have had to choose wisely and also spread tests out, because its an impossible cost burden all at once. But, if I need answers, how else can I get them? How else can anyone get them? I also got a lot of blood-work done through insurance, which will have co-pays and deductibles, and I can hardly wait to receive that bill in the mail and promptly faint (ha).

Now: Waiting. Waiting for results, waiting for more test kits, and waiting to be able to order other tests I need. In the mean time I am fighting this pain which waxes and wanes in intensity on any given day. I am diligently keeping a food diary to find triggers, and I am hoping beyond hope that some conclusive answers come.. soon. In the mean time I only found one thing which takes the edge off and it's called Bentyl. My friend Hannah calls it "tummy valium" and I laugh because that is so spot on! The side effects of Bentyl however are not great, including feeling woozy, dizzy, sometimes nauseous etc. So, I reserve it for times of great need. It helps to calm that tense spasm in my large intestine, and any tiny bit of relief helps.

In the mean time I am really trying to enjoy my good moments, and my better days. When I have a chance to find some joy in my day I really focus on it. I don't want to let this sink me or take my spirit. It's almost May and I feel just as baffled today as I did back in December. The health care system moves so slow, and I am sometimes baffled as to how many months of my life can go by in a flash while desperately investigating. Keep in mind, I am actually a "lucky case" because my mother is a physician who can help fast track some things. Yes, THIS is what it looks like to have things fast tracked. I suspect, judging on what tests are still to come, their turn around time etc that I still have at least a month or two ahead of me before I will have more clarity. It is a waiting game, and a coping game. I try my best to put my attention elsewhere, especially on bad days. I know I have pretty much retreated from the people around me recently, but it feels impossible to connect sometimes through the pain. But, alas, I'm trying.

If you made it this far, thank you for reading! I hope this post provided a small amount of insight into navigating the medical system, the kinds of costs incurred, and why it takes so long to get answers. I hope to have a better grasp on this soon, and of course when I do I will absolutely share.

xoxo,
Christina

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Dear Kelly Osbourne: Lyme Disease Is Not A Punchline, Nor Is It a "Trendy Disease."

4/6/2017

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I know I might not hold the "popular" opinion on this topic, but I felt like this needed to be said. As more celebrities come out and speak of Lyme Disease it's really important to hold them accountable for how their words affect each and every patient globally.

Kelly Osbourne is releasing a memoir about her life. Yesterday, lot of media outlets got an advanced copy, and when they read her chapter on how she battled Lyme Disease they wrote up news pieces with titles such as "Kelly Osbourne Almost Died From Diagnosed Lyme Disease" and "Kelly Osbourne reveals stage 3 neurological Lyme Disease diagnosis in new memoir." Pretty shocking headlines! When I saw them I felt shock, then sadness for her. But as I waited on the article to load I also felt hopeful. I thought, "Wow, another celebrity will help advocate!" However, then I read the article and I was utterly disappointed. Her snippet goes as follows:

Trendy disease... that struck a nerve. So let's break it down, shall we? Yes, in Hollywood there are more and more celebrities coming out and sharing the hell they went through when they contracted Lyme Disease. It's not just Yolanda Foster; it's Avril Lavigne, it's Crystal Hefner, it's Kris Kristofferson, it's Debbie Gibson, it's Ally Hilfiger and so many more. They have lent their voices to the cause, they have advocated for the little people & they have given a face of legitimacy to this cause. This is so important and necessary right now, because for every one celebrity speaking out there are 10 other voices saying chronic Lyme disease isn't real. Patients are mocked by doctors telling them "it's all in your head" & have to fight tirelessly to be taken seriously.

If you watched the Real Housewives of Beverly Hills you saw Yolanda Foster fighting through 2 seasons of ruthless women saying she has Munchausen syndrome. They all speculated if her illness is real and gossiped about if she's even truly sick or not. She put up with a LOT, and sadly it's what so many people go through. In fact, Yolanda is releasing a book this year called "Believe Me: My Battle With The Invisible Disability of Lyme Disease" which is a memoir about her fight with Lyme. Even Yolanda, a well known figure, had to fight through getting made fun of & not being believed. It's hard out there for a patient! Therefore calling it a "trendy disease" is so hurtful to our cause. Because oh yes Kelly, everyone is just begging to be diagnosed with a life altering illness! People are lining up with the hopes of contracting Lyme disease so they can suffer through hell & lose pieces of their lives. Is she kidding?? Mind you this was in her book... it was proofread and edited MANY times. This went to print, with the full knowledge of what those words meant. This wasn't a slip of the tongue or an accidental comment. That's what makes it so much worse.

My next question would be, what does the fact that she believes it to be a "trendy disease" have to do with her not speaking out sooner? Is there some rule in Hollywood that only X amount of people can have a particular disease? I absolutely do not understand how that plays into a reason to not speak out. I could get her saying it was private & she felt like she wanted to keep it to herself. But that's not what she said. It's like, whoops too many celebrities beat her to the punch so she couldn't speak out about it? It's baffling to me. Because then I ask the question of, why now? Is now a good time to admit you had this "trendy Disease" because you had a book to write & it made for a chapter with drama? Lyme Disease is not a punch line, it is not a thing to be used for book sales or headlines. This disease takes people's lives. This disease is ruthless, and I do not take kindly to what feels like an insult to this community.

So what should she have said? If her point was that a lot of famous people have recently shared their diagnosis of Lyme disease then maybe let's look at WHY that's the case. Lyme disease is an epidemic, and its growing every single year by astronomical proportions. It is the fastest growing vector borne infectious disease in the United States. It's only natural that it would also affect celebrities, because no one is immune to it. Kelly had a great opportunity to parlay that sentiment into discussing how Lyme disease is a growing epidemic & how so many people (famous or not) are being diagnosed daily. But she chose not to. She had this great moment to convey that, but ultimately she chose poorly.

There are good advocates & there are bad advocates. Kelly is an example of a bad celebrity advocate. Do I believe she suffered? Of course I do. But I also believe she lives in a bubble most Lyme patients do not. She had the money, connections & resources to call up a personal Doctor, fly to Germany & get expensive specialized stem cell therapy and care. She is lucky and blessed enough to call herself cured and healed. For her it was a quick fix & an easy fix. Perhaps that bubble she lives in leaves her far removed from seeing the real suffering and horrors that every day normal patients go through. Perhaps she lives in a different world in Hollywood & that was her experience. Maybe in her mind it was a "trendy disease" that she felt embarrassed to be lumped in to. So she stayed quiet, got well & went on with her life. Good for her, but that is not reality. Lyme patients would do anything to get well in a snap. Unfortunately that isn't the case for the majority, yet in her memoir (which is making rounds nationally) it was portrayed as such. Like hey, no big deal, just a quick 2 week treatment and you'll be fine! This will only fuel the skeptics & the people who wonder why Lyme takes so many years & years to recover from.

What happens now is her choice. If she really cares she could use her celebrity status for good. She could lend her star power to raising money for advancements in research. She could team up with any of the organizations for awareness campaigns. The possibilities are endless. But I suspect that once this gets her book sales she will fade into the background and not speak up about it again. That is certainly her prerogative, and its certainly her decision how much of her personal life and health she shares with the world. But boy would I love to be surprised and be wrong about this. I hope she realizes her mistake and apologizes. I would LOVE to see that happen.

I really feel like she hurt the greater cause and only furthered her own cause by telling a quick jarring story as a snippet in her book, with no regard for how her words will hurt a community who has fought tirelessly for recognition.

I promise you that Lyme disease is not "trendy" by choice. Perhaps Kelly should take a gander at the Lyme Disease obituary page to see that. This is an epidemic on the rise, and as an advocate I will never stop fighting for the recognition of this disease globally. I hope her words don't undo any progress that was made, because we have all fought way too hard for every single ounce of advancement which was made to this cause.

xoxo,
Christina

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"Pain without the WHY"

3/29/2017

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Pain is as much of a mental game as it is a physical one. This is true on many levels, one being just the simple fact that in order to muscle through pain you have to stay in a good head space and remind yourself that it will pass. You have to keep the hope that you will get through it, or else it will consume you. This is something I've known for a long time, but it's only recently that I've become even more aware of another way in which pain is a mental game; the unknown.

When I began my very first treatment for Bartonella I had mentally prepared myself. I knew my symptoms would flare, I knew I would experience herxheimer reactions, and I knew that while on treatment things could be unpredictable. But the key here is that I knew why all of that was going to happen. Therefore when my symptoms did inevitably flare I understood that my pain was a direct cause and effect of treatment, and therefore I was prepared & educated. Somehow on a mental level that helped me get through it.

It's a little bit like getting your ear pierced. Let's say we have Person 1. While her ear is being prepped she is told that she will have a few moments of quick pain as the piercing gun goes through, and then afterwards there will be some soreness. Person 1 is prepared with all the info needed, and surprisingly the piercing isn't so bad. Then you have Person 2. She is blindfolded and can't hear, but she's just minding her own business kicked back on a couch relaxing. Then suddenly out of nowhere a sharp stab goes through her ear and it begins to throb and ache. Person 2 is frantically trying to figure out what just happened, how to make the pain stop, or what to do. The same exact thing happened to both people (their ears were pierced), but one was prepared & knew WHY the pain would come. Which person do you imagine would report the highest levels of pain for the same procedure? Yup.. Person 2!

Now that was a silly example, but it was the closest real world comparison which I was able to think of. Mentally, knowing that pain is coming, or even knowing WHY it's happening makes it more bearable. I've experienced this phenomenon time and time again. I've been up against some of the most brutal herxheimer's during my time in treatment, and my family can attest that I pushed through them like a boss. I was physically exhausted and going through the ringer, but I was mentally still swinging. I had a purpose & there was a cause for my pain. I understood that, and even if it just took an ounce of the edge off, it helped.

But then there's the other type of pain.. the pain which doesn't have answers. The pain which comes unannounced and doesn't respond to any of the usual methods of relief. The pain which you have to spend hours researching online to find the cause & try to stop it. The pain which is not tied to any kind of direct cause & effect which you can see. The pain which brings you to your knees mentally. This is the pain which exists without the WHY, and it exists in such a powerful way that you wonder if you will survive it. You wonder if you're slowly dying on the inside. You begin to wonder if you're going crazy or if something is seriously wrong and you're just missing it. Tears are shed; from frustration, from fear, from the unknown. Suddenly nothing feels like it makes sense, and your only purpose is working backwards to find the puzzle pieces which will stop this pain.

Sometimes I feel myself crack underneath my strong exterior. I feel the sadness levels rise as they pull me under the waves of helplessness. And those times are when I'm living in the world of "Pain without the WHY." My mind starts to lose steam when it doesn't have any concrete answers to fuel it. Pain feels much tougher to bear when it doesn't come with an expiration date. When will it end? Why did it start? How can I ease it? What triggers it? Living in a world without the WHY is like living in a snow globe where the same song is playing over and over but you can't escape. You're simply trapped with the unidentified pain searing your body on repeat.

I have yet to find a good way to cope when I'm stuck in the land of "Pain without the WHY." I wish I could say some prayer or meditation get me through the long months between answers. I wish I could say anything actually does it for me, but truly the only way I keep going is by never giving up investigating. I put my detective cap on & I start to hunt down the clues my body gives me. I pair that with test results & gut instincts until somehow it starts to translate into real world results. I've learned that no one else is going to fight for you if you don't do it. No one else is going to solve your worries, your pains, your fears. Mentally it's just you. And ironically the very thing which breaks you (the pain), is the very thing which won't stop until you put the work in to make it stop. Living in the "Pain without the WHY" is a lonely locale. Table for 1 please. It's isolating to be on a deserted island fishing for answers, and sometimes it wears on the soul.

But I know that the one thing I'm not alone in is this feeling. If you've experienced pain then you know the difference between pain with a purpose vs pain without answers. They live on different scales, and it feels like they exist in different realms. It's a mental game through & through, and only the strongest survive. So here's to strength... strength in the darkest hours, strength in the longest months, and finding enough strength to keep the boat afloat until it lands back on the shore of certainty.

Xoxo,
Christina

3 Comments

A Scholarship Opportunity for Students with Chronic Lyme Disease!

3/26/2017

7 Comments

Having a chronic illness like Lyme Disease is expensive, and the financial burden often leaves patients making tough decisions about their education. That's why I am so excited to share this Chronic Lyme Disease Scholarship! This scholarship is open to both high school and college students and was created by Nate Preston, an attorney who has a personal connection to Lyme Disease. Nate has several close family members who struggle with the illness, and after seeing the physical, emotional, and financial damage of the disease he wanted to give back. This is such a selfless act, and one which will truly help a student in need.

Who is eligible?
One winner will be chosen for this scholarship. Candidates must be a student who has suffered from chronic Lyme disease. Applications are open to current college students as well as high school seniors, who are accepted to or currently enrolled in a college or university within the United States.

How much is the Scholarship?
$1,000. This $1,000 scholarship is designed to ease the financial burdens of one student each year who has spent a great deal of money in medical expenses for the treatment of chronic Lyme disease.

How is the winner chosen?
The award will be based upon academic achievement, school & community activities, and an essay of 500-1000 words describing how Lyme disease has affected the student’s life, especially in regards to their values and educational and career goals.

Where can I enter?
Visit this link HERE.

The best news? This scholarship will be offered yearly!
This years application deadline closes April 30th, and the winner will be selected by mid-May 2017.

Good luck to all who enter!

xoxo,
Christina

7 Comments

Life Update: Ups/Downs, Sphincter of Oddi & Visual Therapy on Pause

3/14/2017

5 Comments

What's that saying? "Man plans, God laughs." Ahh yes, this could not be more true, and how often I forget it. In my last blog post I had wrote about staring a vigorous visual therapy program. I began this program & completed about 3+ weeks before having to stop due to other health issues which arose and became a priority. I was burning the candle at both ends & something had to give, so the visual therapy was put on pause. It was a tough decision, one not made in jest, but ultimately the right thing to do.

What happened? Oh boy, where do I start! Around the middle of December I started to have some pretty tough stomach aches. They were in my mid-line stomach area & would wax & wane in severity. Because so many of my symptoms cycle through I tried to tough it out thinking it was going to leave soon.. it didn't. Things got worse & by early/mid January we discovered I was fighting C. Diff. The area of my colon most affected was the transverse & descending, but honestly the pain wasn't the same as when I had C. Diff in the past, which is why I missed it for so long. In some ways it was, but in other ways it was another kind of ache I couldn't quite put my finger on. Therefore it really eluded me for a long time to check for it. But alas I had an answer & could get started on treatment for it asap. I believed this would be the answer to all my stomach woes. In fact I soldiered through visual therapy this entire time, which if you've ever had C.Diff you will understand what an accomplishment that actually was. However the C. Diff, I would find out, was just the tip of the iceberg.

As January lumbered on the pain did not get better, and in fact it just got worse. The mid-line pain radiated to my back and my shoulders & would come on in strong uncontrollable attacks. I no longer have a gallbladder, but the pain was reminiscent of when I struggled with that except much more severe. So we started investigating in that direction and realized the pain was coming from my pancreas. And the reason it hurt much like my old gallbladder pain (often affecting my liver too), was due to the Sphincter of Oddi. I hope to write up a comprehensive post all about SOD soon, because it's a fascinating little valve which is small but mighty. When the SOD spasms it wreaks absolute havoc on the pancreas and liver. More so, it wreaks enormous pain.

Both your bile and your pancreatic juices flow to your small intestine through a common duct that is opened and closed by a round valve. The valve is a muscle called the sphincter of Oddi. Sometimes the sphincter of Oddi goes into spasm; It clamps shut and cannot relax. This is called sphincter of Oddi dysfunction (SOD). The condition causes intense belly pain. Your digestive juices back up into your pancreas and into the bile ducts of your liver. This can causes inflammation of the liver and pancreas, and in some cases pancreatitis. It is most common in individuals without a gallbladder.

I can only describe a Sphincter of Oddi attack as a gallbladder attack on steroids. In January/February I was having them almost daily because I kept eating and not realizing I was triggering it over and over. That might sound silly but the effects aren't instant. So, the eating brings on the attack much later .. often many many hours later. It's not uncommon for me to have an attack 8 hours post meal, and then deal with mini attacks and painful pancreas inflammation for days following. Before I understood what was happening I was at a complete loss. I also struggle with a LOT of stomach issues, and having this pancreas/liver pain on TOP of C. Difficile was kind of my personal nightmare. The two together felt like someone chewed me up and spit me out. Everything hurt, and pinpointing what exactly hurt was hard to say. Once we realized what was happening I immediately went on a liquid diet. I lived on shakes & occasional crackers for 3 weeks while trying to allow my digestive system & organs to get a break. I was so weak, so exhausted, and battling a lot of pain. Every inch of my body hurt and was depleted. I laid in a ball and drank shakes and just tried to survive this period of time, because it was a lot.. mentally, physically, you name it.

How do I feel now? On the mend, but not quite there. Managing SOD isn't easy. I've struggled with it in years past, and it always came on just as mysteriously as it went away. As far as this occasion, I really can't say for sure what the trigger was. Why it flared up now out of the blue is eluding me, but I have a theory which I'm working to confirm now. All I do know is that in this process I discovered castor oil packs, and I LOVE them. They are the only thing which offer some soothing relief since any kind of pain medicine is a big no-no with SOD. Pain medicine actually makes SOD worse, so that makes the condition trickier to manage.

For now I'm still fighting the C Diff & juggling the anti-microbials which make me herx, but are necessary. It's a fine balance to find a mix which will kill the pathogen but spare my body/liver (especially with mine being in a more fragile state). I'm also playing an up and down game with my SOD pain & digestive difficulties. So it's a little like two steps forward, one step back. I'm making progress, slowly but surely. Some periods thing's get worse (like high stress situations), and then I feel like I get thrown down into the trenches again, living on a liquid diet and getting IV fluids until my pancreas calms down. I have good stretches and tougher stretches, but I am determined to find a lasting solution. When I'm back on my feet and more stable I will have to start from the beginning with visual therapy, which is a little disheartening. However, I've come to peace with it. Sometimes life throws a wrench in your plans, and although I don't know why it occurred I'm just trusting in the process. I can only take one day at a time & adjust as needed. So for now, I'm adjusting to this & will keep taking steps. Thank you to everyone who takes a genuine interest in how I am progressing, and how things are going. The prayers and the support are deeply felt.

xoxo,
Christina

5 Comments

A Big THANK YOU!

3/12/2017

10 Comments

This photo is the epitome of what an "invisible illness" is. It was taken while battling through pancreatitis, right after I had my IV removed. You'd never know..

I want to sincerely thank everyone who purchased items from the Christmas Shop! Although this is long overdue, here is the confirmation that the funds were received, and I wanted to share with everyone that we raised over $500 for Global Lyme Alliance! This is a victory and accomplishment for everyone who helped by purchasing items, sharing the link, or wearing a shirt in support! I'm very grateful, and I hope to do more fun things for awareness in the future.

xoxo,
Christina

The letter of received funds from GLA. *The letter denotes the funds received 12/31/16 for tax purposes, because the sales came mostly from the 2016 calendar year. However, the check was sent in January when the shop closed

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