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"Pain without the WHY"

3/29/2017

3 Comments

 
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

 
Picture
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

11 Comments

 
GLA CheckThis 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

Picture
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
11 Comments

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