What will you choose today?

Last night, we had a party to celebrate World Down Syndrome Day with our local Down syndrome group. I had been playing on the bouncy house slide with my little sister, and came to sit down for a break and some food. That's when it hit me like a ton of bricks. All the stress of being sick. And then I realized.

I had been happy.

For a half hour, playing with my sister, watching her enjoy life. I had forgotten for awhile how bad I was feeling, and I had been happy and content.

I have been told many times that mental health is a huge part of feeling good and getting better. I knew it was true, but I didn't realize how true it was. 

(I don't mean that this disease is in my head. Not by a long shot. I forgot for a half hour about being sick, but I still was weak, feverish, very short of breath, and had a headache. I just wasn't thinking about it and focusing on the negative.)

That little bit of happiness was a breath of fresh air, and as I was thinking about it more later. I realized I haven't been truly happy for a long period of time since I was in Ukraine, in December.

Since Ukraine, I have been dealing with another round of depression, a relapse from when I was feeling great, lots of doctor appts with more diagnoses and lists of things I can't eat, and stress from from non-Lyme related sources.

I should be happy and content for two reasons alone and have no excuses. Those two reasons being God is good, and I am alive. But I'm not happy and content. And I should be.

So today I'm deciding. I choose to work on happiness and contentment. I choose to get closer to my Savior and have him guide me and teach me how to choose JOY.

What do you need to work on in your life? Will you choose joy with me?

I'm in Ukraine.

Copied in part from my other blog.

So I am in Ukraine! I'm here with my mom for a couple weeks to pick up my little sister and finish the adoption paperwork.

So the number one thing people said to me before I left, after everyone found out I was coming, was: "So you're feeling better?"

And my answer was a resound YES, but I want to expand more on that.


Over the last months, I have dealt with symptoms ranging from brain fog, tics, twitching, dizziness, vision problems, never ending headaches, to extreme joint pain, extreme fatigue, chest pain, heart palpitations, nauseousness, abdominal pain, and a slew of other stuff.

I ended up with a bad UTI, several colds, and some other things that made me go down hill fast. My immune system is already shot, so I usually catch everything anyone else has which makes the symptoms I already have flare. And full moons are very bad too.


During this entire adoption process, we had talked about me going with mom for the second trip if my health improved. But as the time came closer and closer to traveling, I wasn't getting better. We got our travel date and mom said I wasn't going to come with for the second trip unless there was a miracle with my heath. And I fully agreed with her. I knew I wasn't doing well.

A week or so before they left (Nov 11) I started a new treatment at a new doctor. And a day or two before they left I started to feel better. I had several very good days in a row which I was super happy about, but the good days didn't stop. I had a couple set backs, like a panic attack the night they left, which was likely from the stress, but otherwise was doing good.

The difference was night and day. Previously I would have been able to be on my feet and up and about for a couple hours on a good day. And then I would be exhausted for several days trying to recoup. In the days before my parents left and even after I had like 4 days in a row I was on my feet doing stuff all day long. Lots of time in the kitchen, lots of helping to get things ready for them to leave, etc. It was amazing.

I continued to do good with my energy levels. And other things improved, like neurological symptoms and nauseousness.

We decided I was well enough to go.

I am still praising God for starting to heal me, and continuing to do so! Yes, I think part of it was the new treatment, but most of it can be attributed to God and the prayers of His people on my behalf. I am so thankful!!!


Dealing with it here:
Despite being awake 52+ hours with 4 hours of plane "sleep" before I feel asleep my first night here, I didn't get sick, and just bounced back. Amazing. All the walking hasn't bothered me at all, nor have I gotten sick from the full moon.

About the food. When I mentioned above that I changed my diet, that means I went off all grains, all processed sugar, most processed foods, and a lot of dairy. I also have food sensitivities to a lot of foods including tomatoes, potatoes, peppers, peanuts, most other nuts except almond flour, oranges, celery, apples, and carrots. (I'm only allergic per the allergist to ragweed and grass, but I still have sensitivities.)

So that takes out a lot of what there is to eat! I have been eating near Paleo diet, but with more eliminated. It's hard, but worth it for the difference it makes in how I feel. I've been trying to eat the same here, but have cheated a few times. It's easier when there is nothing in the apartment that I can't have (except Milka!), as mom is eating the same way with me. At Celentanos I always get Borsch and a chicken cheese veggie thing. lol

The other big thing that was a huge factor in if I was well enough to go was my sensitivity to smells, particularity cigarette smoke. A couple months ago I walked into the gas station, and there was someone standing outside the door smoking. I started coughing and gagging, which ended in respiratory problems, and took several minutes to recover from. And in Ukraine, everyone smokes everywhere. But like with everything else, that has gotten better too. I am still super sensitive to it, and the first to smell any trace of it, but it doesn't bother me or make me cough unless it's right in my face.

So I'm doing really well health wise! :) Thank you to everyone who has prayed for me!!!

Our MAF (most awesome facilitator) says that I got these nasty bugs in Ukraine last time, so I need to leave them here when I go home. I'm all for that! :)

I'm thankful for Lyme disease.

Today, on Thanksgiving, I am thankful for Lyme disease.

I know, it sounds weird.

But there is a difference between being thankful for what you have, and wanting what you have. Some of the things I am thankful for, I don't want, nor would I choose to have, like Lyme disease. But that doesn't mean I can't be thankful for what's in my life.

I am thankful for the things God has shown me and taught me through this battle. Some of them being:

I am thankful for my freezing fingertips and toes, so I can remember to pray for those who don't have mittens and socks.

I'm thankful for my insomnia, and how I have started to read my Bible more when I'm up, awake, and bored in the middle of the night.

I am thankful for my food sensitivities and restricted diet so I can remember to to pray for those who don't have enough to eat.

I am thankful for the chance to know my chiropractor and other doctors. They not only have made me feel better physically, but most of them encourage me spiritually too.

I am thankful for how being sick has strengthened my relationship with my mom.

I'm thankful for how God has forced me to lean completely on Him and not my own strength. Because I wasn't doing that before I got sick, and I needed to learn how.

I'm thankful for all the amazing people and friends I've met in Lyme support groups online.

I'm thankful that I have learned the people in the world really aren't as bad as the world seems. Strangers sending me notes of encouragement, people at church checking up on me, learning who my true friends really are.

I'm thankful I have an excuse/valid reason to sleep - chronic fatigue syndrome.

I'm thankful that I am dealing with this now as a teen, instead of in college, or in 15-20 years as a mom.

I'm thankful that I have, or have learned to have, a high pain tolerance.

I'm thankful for medicines and things God made to help us heal.

I'm thankful I have been able to keep a mostly positive outlook.

I'm thankful that I have been able to help several other people diagnosis their Lyme before it got much worse.

I'm thankful that Jesus still loves me, no matter what. And gave his very life to save me.

Are you sick and feeling like there's nothing to be thankful for this Thanksgiving? 

There are so many things to be thankful for. Surely you can relate to at least one of them on this list, and if not think of at least one blessing in disguise of being sick.

Remember that God is good, always, and no matter how bad things may seem, He still loves you.

"Because of the extravagance of those revelations, and so I wouldn’t get a big head, I was given the gift of a handicap to keep me in constant touch with my limitations. Satan’s angel did his best to get me down; what he in fact did was push me to my knees. No danger then of walking around high and mighty! At first I didn’t think of it as a gift, and begged God to remove it. Three times I did that, and then he told me,

My grace is enough; it’s all you need.
My strength comes into its own in your weakness. 

Once I heard that, I was glad to let it happen. I quit focusing on the handicap and began appreciating the gift. It was a case of Christ’s strength moving in on my weakness. Now I take limitations in stride, and with good cheer, these limitations that cut me down to size—abuse, accidents, opposition, bad breaks. I just let Christ take over! And so the weaker I get, the stronger I become." (2 Corinthians 12:7-10 MSG)

Now if that's not a good reason to be thankful, I don't know what is. His grace is sufficient, always.

Too much.

I try to be happy and have a positive outlook. Because if I don’t I get depressed, and fall into a deep, dark, ugly pit.

That’s why people often think I’m feeling better. Because I choose to wear a smile, have a good attitude and push through the pain.

But sometimes it’s too much. The pain is overwhelming, the symptoms multiply like fruit flies, the stress escalates, new diagnoses, everything happens at once, and it knocks me over.

I can’t smile without someone being able to instantly tell it’s fake. I am on the verge of tears all day, holding them in, trying not to lose it. I’m not just dealing with normal symptoms, I suddenly have all these new symptoms from a new problem I’m not used to dealing with. I can’t function like a normal person, I can barely function at all.

I lose my positive outlook. And I get scared about the future. I deal with high anxiety, and wonder if I’ll ever be able to live my life again.

Sometimes it’s like that, and it’s too much.

Right now is one of those times.

And I’m barely hanging onto the edge of hope, of solid ground, so I don’t fall into the endless deep dark pit.

I’m clinging with all I have left, clutching His hand, trusting Him not to let go.

I'm a spoonie.

I'd seen things people use the hashtag #spoonie many times, and always wondered what it meant.

Until the other day when I came across this article.

The Spoon Theory

It's so perfect. I cried when I read it, and have since been sharing it with friends and family to help them understand ever since.

Go read it if you haven't already, whether you are the one sick, or you know someone who is.

It's been one week.

Last Wednesday night, I had a very scary episode. I blew my nose with a Kleenex (big mistake), and had an allergic reaction to whatever “dust” was on it. Not wanting to use another Kleenex, I went and laid back down and “sucked it back up”. I did that while laying down, and it went the wrong way, and into my throat and I started coughing. And I coughed and I kept coughing.

Mom happened to walk by my room then and heard me. She came in to make sure I was okay, but by then it was getting worse and worse. I couldn't stop coughing, because I had to get the stuff out of my throat and then I got scared, because I was having trouble breathing with coughing so much. So I started crying, which loosened everything up and made it worse.

After about 20 minutes of this I was extremely weak from coughing, and gasping for air between trying to cough. My nose was so stuffed that I couldn't breathe through it at all, and I was thrashing in pain and shaking. I wasn’t getting enough oxygen and loosing brain function. It was like I was watching myself from above, but not really being there, yet I knew what was going on.

There were several instances where I couldn’t get air for several seconds, which scared me and made my cry harder. I couldn’t calm myself, even though I didn’t understand why I was so upset, probably something similar to a panic attack. Mom and later on, Dad were there through the whole thing praying, getting stuff, and trying to calm me down (but it wasn’t doing any good).

During one of those times I couldn’t breathe for several seconds, I watched as I started collapsing and losing control over my body. I slumped forward just like you would see someone do on TV. In that split second I had a choice, to keep fighting or give up. I wanted to give up, because I was so weak and tired, but if I did I would stop fighting for air. I choose to keep fighting.

Many times over the last week I have wondered if I should have given up. I might not have died, but I might have. I doubt my chest was strong enough for CPR, but my heart probably would have kept working and I would have passed out. Haven’t gotten my nursing degree yet so I wouldn't know. Lol

But the decision felt like life and death, so forget the medical, that’s what it’s like to me in my mind. I choose life, but since I want to die daily, I sometimes wish I had chosen different. And if it happens again, I don’t know that’d I would choose the life again.

No, I’m not suicidal, but that doesn’t mean I don’t want to die. Sometimes the pain is just too much. I don’t think I’d have the guts to kill myself anyways.

I daily regret the decision I made, but there are other moments I am glad I chose what I did. Life is so complicated, messy, and beautiful.

I’m just glad I don’t have that decision to make any time I want. I’ll let God take care of it!

And in case you were wondering, the episode lasted for about 45 min total (felt so much longer). Mom did ask if she should call an ambulance once or twice, but I said no, probably because I didn’t want to deal with the Lyme issue at the ER, plus it would take 10+ min for the ambulance to get here. It finally ended by me gagging myself to get all the gunk out, drinking hot lemon honey water, and breathing steam from hot water. It took another hour or so to calm down, and in the next few days I had “panic attacks” almost anytime I thought about it. It was scary for sure, but God brought me through. <3

Figuring things out.

I love it when I am able to piece things together and match a symptom with a reason other than Lyme.

For example. A couple weeks ago, I read an article about how you aren't supposed to go outside with any citrus juice on your skin because it can make you sunburn easily and bad.

Last Saturday, I was at an outdoor craft sale and sitting in our booth with my friend. We had a tent us, but I was sitting near the edge and the sun was shining on me. I thought it was nice that it was keeping me warm, because the day was somewhat chilly.

It was bright and I have light sensitivity due to Lyme of course, so I was wearing sunglasses. That night, I took them off, and I could see what shape they were on the side of my face that was in the sun. In other words I was pretty red. Later that night I put up my hair (which I took down when we got home from the sale) and found out my neck on that side was very burnt. I thought it kinda funny that I burned that bad when I didn't burn all summer.

Fast forward to yesterday... I wore a thin scarf to church to hide some of the redness, and on the way home the I took my scarf off and the sun was on that spot, and it started hurting, pretty bad.

So I wrapped my scarf around my head and we were talking about sun burns, etc. I mentioned that article I had read, and then I realized that there is a lot of orange in the essential oil mix I'm taking for treatment. And I drink quite a bit of Lime-aid* to take daily to take my meds. Both are very citrus-y.

So that's why I burned so bad when I hadn't burned all summer. Mystery solved. Except I'm still very red and sticking to tank tops and loose neck shirts because now it's peeling (I was wearing a loose neck shirt when I got burned, so a good chunk of my shoulder is burned too). :/ Oh, well, live and learn.

*Side note about the Lime-aid. Ya, limes are the background of my blog, but I'm not drinking lime-aid because I have Lyme. lol I need something besides water to take my liquid meds in, and since I can't have oranges, lime-aid is my next favorite low-sugar juice. I do have my younger sister (6 yo) convinced it gives you Lyme disease though, so she doesn't drink it all on me!!