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Where The Heck Have I Been? (A Health Update)

3/11/2015

7 Comments

 
It's been a long time since I've wrote an update specifically about how things are going with my health, sooooo I guess it's time. I'll jump right in...

Back in December I started having quite a bit of pain and problems with my pancreas and liver. My pancreas was visibly swollen, tender to the touch, and absolutely everything hurt to eat. It was a dull constant ache that no amount of heat, essential oils, or anti-inflammatory could touch. I went on a clear liquid diet for about 3-4 days around Christmas, and got an IV. This was incredibly helpful to let my digestive system rest a little bit and give my organs a break.

Alas, while it did give me a break it was short lived. Once I started to eat again and build back up on some supplements the herxes came on with a vengeance, primarily neurological at first. The night-time seizures and spasms would go on all night when I tried to rest, and I spent 3 days straight awake. I was the definition of a zombie. This went on for weeks, and my only source of sleep was short naps I would take during the day if my body allowed. The less sleep I got the more stress it put on my body as a whole and my pancreas and liver took a beating again. I fought pancreatitis and liver enzymes skyrocketing as it began to fail. Times were tough. All of this craziness took up all of January and February, hence my silence on the blog. I was in too much pain and had too much neurological strain to be able to look at computer screens or phones and process much. My brain was utter mush, that's the best way to describe how it felt.

The biggest trouble with all of this has been my weight, which has dropped greatly. Honestly I haven't got on a scale because I don't want to stress myself out, but my parents are keeping an eye on it for me. I know that right now I have no control over that, my stomach sometimes will not physically allow me to get food down so being upset about it won't help. A few years back when I had a seriously low body weight I found a supplement called Benecalorie, which helped a ton. However since then I became allergic to one of the main ingredients so I haven't been able to utilize it. We are currently on the hunt for some kind of meal replacement shake that is packed with calories but doesn't contain the usual suspects (corn syrup, sugar, soy, dairy). Pretty much all of the stuff on the market that packs the calories also packs other harmful substances.

This leads me to the latest update. I highly recommend that any patient with a chronic illness gets an Organic Acids test run by their Doctor. It is incredibly informative and can tell you a lot about what is happening in your body. I received my results recently and in a nutshell it confirmed that I am incredibly malnourished. I'm severely depleted in a lot of vitamins/amino acids/minerals, most noteably the B vitamins, CoQ10, Carnatine, NAC, and many more. Although I do take vitamins, since my stomach is in such bad shape a huge amount of those vitamins don't get absorbed to be used by the body. This is a problem a lot of people face when they have been sick for so long. The best way to get your vitamins and minerals which actually gets into the bloodstream is from actual food (the most bio available), but I have not been eating much the last 3-4 months so that hasn't helped my case. I can look in the mirror and know that my body is weak and desperately needs food, but it really hit home to see just how depleted things actually are. Right now my prayers are to find a way to build my body up that doesn't involve a feeding tube. I am fiercely fighting that notion.

A few other things I learned is that I am fighting two infections in my stomach. One is a fungal infection & the other is a bacterial infection. Together the two of them have set up shop in my small and large intestine, which I suspect is making eating that much more painful and adding to the general unwellness. I have dealt with stomach issues for a long time, but lately I have had some of the most brutal stomach aches I can remember. Between the infections in my stomach & the pain from my inflamed organs it has been hard to distinguish where one ends and the other begins. But I feel incredibly thankful to have the knowledge of what is causing at least some of the issues.

I can't begin to treat the infections in my gut yet because I'm just not strong enough. I don't have the proper nutrition or strength, and it's likely I won't get very far if I tried. So first things first I have to put on some weight and get some nutrients in me. That is task #1. Along with that task is accomplishing it without eating too many fats that would further aggravate my pancreas. Quite a delicate balance!

Shew.. I think that is the general gist of things. This is probably one of the more debby downer of posts, which is why I always hate writing them. I know that so many wonderful people follow along on this blog and they want to know what has been happening with me. So I want to write updates, but I also feel like I'm playing the worlds smallest violin as I type each word. I sincerely hope that none of that reads as pity, but is simply informative. I have been pretty much MIA and disconnected from life lately and well, this is why.

Thank you to everyone who entourages me, prays for me, and lifts me up in every way. It means a lot more than I can put into words. I know that God is in the drivers seat and he will deliver me from these trials the same way he delivered in the past.

xoxo,
Christina
7 Comments

It's Always The Darkest Before Dawn

3/7/2015

17 Comments

 
"It is always the darkest before dawn" - Thomas Fuller

There are many things that a chronic illness can take from you. It can take your job, your ability to go to school or drive a car, it can even take away your favorite foods. The simple pleasures in life become out of reach, even mundane things like showering or reading a good book. But these are all things that you are warned about. Everyone tells you to expect these things, and so you do. You brace yourself for the impact of letting go of people & things that mean everything to you. You learn to adjust and adapt to a new normal, one where you don't get to follow your dreams, and one where you watch the world bustle around you in progress while you stand like a statue watching from afar. But there is something else that you can lose, and it's something that no one quite warns you about. 

No one tells you that if you aren't paying attention, then ever so slowly like a thief in the night you can lose the very essence of who you are. Suddenly you aren't just fighting for your health but also for your identity.


During the first 2 years of treatment I never lost my spark or my spunk. I was physically very far down but my soul was filled with joy and energy. I kept up with all my friends, I painted my nails and had spa days, I loved to get highlights and primp even though I just laid in bed. It made me feel good. I loved to faux online shop for clothes by putting things into my cart and never buying them, but just daydreaming about being well enough to have places to go wear all these wonderful outfits to. When I fell asleep at night I dozed off thinking of things I looked forward to that were out of reach like seeing fire works on a beach or having dinner with my friends again. This sense of hope and never losing myself is what made my days go by quickly despite the circumstances. I was still me. Every quirk that made me who I was stayed in tact, and no one tells you how absolutely crucial that is to being a fighter.

When I relapsed last year it took all of my joy with it. I'm not sure how it happened, but I looked around in October and realized that along with my health my happy was also gone. I wasn't smiling as much as I used to, I wasn't genuinely joyful over things, and I had less of a desire to do the things I loved. It really disheartened my soul to know that I had worked so hard and put so many grueling months into treatment & just when I felt life come back into me everything suddenly crumbled. It was an utter shock how quickly my health spiraled down out of my control, and to be honest I did not know that was possible. I felt like the people who relapsed were the people who slacked, or the people who weren't keeping up with supplements or diets, or maybe the people who didn't care. I never imagined that even when I was doing everything right it could still happen. I felt like a failure, I felt like I let everyone down around me, including and MOST importantly, myself. And somewhere in all of that is when I started to lose who I was.. ever so slowly.

When I say that I lost myself, it's more a sense of not being able to identify with anything. I can't think of many adjectives to describe who I am right now in this moment. I guess last year I would have said things like "good friend," but now I'm so busy doing numerous health related tasks or researching things that I don't have fuel left for that. I've been trying to force myself to connect with the world around me, but I simply can't. I usually don't have the energy or I'm battling pain, and in the moments where I'm free all I want to do is lie on my bed and have that moment of silence and peace. I choose that over connecting every time. I can't tell you the last time I logged on to any social media that wasn't advocacy based (lady of lyme related). 

It is so utterly bizarre to feel like I'm just not myself in any way shape or form. I'm indifferent to everything, excited about nothing, and bored with all the things I used to love. Crafting, writing, mentally challenging myself... none of that feels good.


This is my now. Not my forever, but my right now.

I know that I will find my happy again, I know this isn't permanent. I have a lot of faith that the soul sometimes needs to hit a low point in order to regenerate. Right now I have to stay focused on my tasks at hand and getting well. Every spare second I have is dedicated to research in some way shape or form. I am determined to get well, I will never stop educating myself & fighting to find a way. This relapse has thrown a lot of new hurdles at me, and every day is a new mystery of perplexing puzzles, but it only fuels me to figure it out. It doesn't matter how long it takes me to get there, as long as I get to the finish line.


If you're reading this & you are feeling a bit broken yourself, know you're not alone. It happens, and it's okay. As long as you remember to not let it defeat you or take your zest to keep fighting then it's healthy to take a moment and wave the white flag. With a chronic illness you are sick & managing pain every day for years on end, and that will wear on the strongest persons soul. You might feel like you're moving in slow motion, but all that matters is that you keep taking steps.

Xoxo,
Christina

Ps - If I haven't replied to you via email (my inbox is full), or replied to comments please know I plan to be back in action & hopefully with an update very shortly. This post itself took about 5 days to write up, so things are a bit slow to go but I promise I'll respond to every last email. 

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