Dreaming of a white Christmas and home...

A few positive things about spending Christmas away so far from home: 1) The new perspective you get about the true meaning of Christmas. I got to focus a little more on being forever grateful that God sent His son here to save us all from our sins. 2) I learned that Christmas presents are nice, but being with family and friends is the tradition I love a lot more than gifts. I love buying presents for the people I love, but I am thankful God has given me people who love me much more than any gift I could ever buy them. 3) And finally, the fact that I love my husband more and more with each passing year and the ways he shows me his love are much more important than a nice Christmas gift. It’s the day to day things he does, the way he takes care of me, that make me realize material gifts are never an indication of how much someone loves you.

Now, don’t get me wrong, I love presents as much as the next person, but this year I saw past the gifts to the most important part of Christmas – LOVE. First and foremost, God’s overwhelming love for us that resulted in His sending His son down to earth to endure so much to save us all from our sins. Then, God blessed us all with family, friends, or friends who feel like family who love us and stand by us no matter what we go through. God has blessed me with so much that I often feel like a spoiled child when I complain to Him about how I want to be healthy. I know many healthy people who are not as blessed as I feel every day. Of course I want to be healthy – it’s why I’m here. However, through all of this I have gone through a range of emotions – frustration, anger, excitement over the smallest of improvements, disappointment about lack of progress – the list goes on and on. The longer I am here, the more God works in my heart, and eventually my hard head gets the message. I am blessed with His love. His love that is greater than all the seizures, surgeries, sicknesses, and setbacks. He is with me through all of this, even when I don’t act like I should or say the things I should – His love is forgiving and perfect. I am so glad to know that I don’t have to be perfect to receive that truly amazing grace.

Now, I know I have written quite a few verses on Philippians on here somewhere (or at least my “Lyme brain” thinks I have) but I want to write a few that I may have written previously because God is hitting me over the head with these verse this morning and making me see them in a new light:

“Rejoice in the Lord always. I will say it again: Rejoice! Let your gentleness be evident to all. The Lord is near. Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus. Finally, brothers, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable -- if anything is excellent or praiseworthy -- think about such things.” Philippians 4:4-8

Now I’ve read these verses so many times, as have many of you, I’m sure. However, today as I wrote the beginning section of this entry I realized God was doing so many of these things in my heart today. I will list them below in the order they occurred to me:

1) “Rejoice in the Lord always” – I started this by stating that I am so grateful for God’s love and grace so I am REJOICING in the Lord!!! Even 1,200 miles away from my “Christmas traditions” I am remembering that Christmas is ALL about REJOICING IN THE LORD!!!
2) “...with thanksgiving present your requests to God” – the next thing I wrote about was my thankfulness for my family, friends, my loving husband and how “things” pale in comparison to those things which cannot be bought – like love and friendship. So, I am THANKFUL and I present my requests to God knowing that while I may not have good health – I have a good life of love and laughter.
3) “Let your gentleness be evident to all.” – I have been having to think about many things lately: A) Changing my treatment protocol B) What I can do to ward off these seizures that seem to have no clear “triggers” C) How I should go about discussing changes like this with my doctor. In thinking on all of this for weeks I have often thought, “Should I be putting my foot down and demanding change or should I be the ‘good patient’ that I have been for the past 6 months?” I had been going to just quote Philippians 6-8 but as soon as I opened my Bible God laid it on my heart to include verses 4 and 5 and now I know why. Our actions, each and every one of them, are used to determine what kind of person we truly are. As a Christian, I think it’s counter-productive to stomp my feet and demand things to be done in a certain way. I know some of you are thinking, “This is your health, K, so start STOMPING YOUR FEET! Demand things of your doctor!” Hang on and I will address what God is telling me about that as well.
4) “The Lord is near.” – yet another part of this group of verses I had not planned on including. It comes directly after “Let your gentleness be evident to all.” and I think there’s a reason for that. I think it is a way of saying, “There’s no need for you to be stern, forceful, demanding because THE LORD, YOUR GOD, IS NEAR!”
5) “Do not be anxious about anything, but in prayer and petition, with thanksgiving, present your requests to God.” So, I’ve been worrying about all these issues with my health, how should I handle them, what should I do? The answer is right there – do NOT be anxious. That’s first. That comes from having faith and knowing that God’s sovereign plan has these things covered. Second you are to pray WITH THANKSGIVING – again, the first thing I did as I began this was to list all I have to be thankful for, all I have to thank God for every day. My life is far from perfect, but no one’s life is perfect and I should not expect perfection on this side of Heaven. I’ve learned if I state my “list of things to be thankful for” at the beginning of my prayer, my anxiety goes away before I can even get to my “petitions” or requests. It allows me to see what all God has already done for me, how many times He has already gone before me solving problems I never even recognized BEFORE I knew they were problems. Basically, this says, “Count your blessings first and then hand over those troubles to God, every single one of them.” Don’t just say you are giving them over to God, don’t just hand over your “big worries” and think you can handle the small ones on your own, or vice versa. I’ve said many times that I’ve handed a problem over to God and then found myself later worrying over the very things I “said” I was giving to God to take care of. When we really hand our troubles over to God we need not worry about them again. Again, “The Lord is near” so He knows your worries, your fears, your weaknesses. Doesn’t matter if you hand them over or not, He still knows every one of them. So why not just give them over to Him and thank Him for all He has done for you and all that you know He will do for you in the future?
6) “And the peace of God which transcends ALL understanding, will guard your hearts and your minds in Christ Jesus” (emphasis on ALL is my own doing) – I sometimes wonder about God’s level of patience with us human beings. Because so many times the Bible uses different stories, different accounts of the same story, parables, etc. to get the SAME message to us over and over again. I’m stubborn, I’m hard-headed, I think I am right most of them time, but honestly, how many times does it take for me to understand and trust that God will take care of me in every way? He has done nothing but show me that even in the worst of times He is with me, He holds my right hand, He counts my every tear, He feels my pain, so why do I continue to try and tackle things without going to him “by prayer and petition, with thanksgiving”??? Because I’m human and He’s God and I am very thankful His forgiveness is so much more than we can comprehend. We cannot even understand a fraction of that type of forgiveness because as humans we are incapable of it. It’s that simple. So, be thankful that once you confess your sins, once you have humbled yourself before God and asked Him for forgiveness, He gives it to you immediately.
7) “Finally, brothers, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable – if anything is excellent or praiseworthy – think about such things.” So here we have it again. God wants us to rejoice in Him. He wants us to allow everyone to see our gentleness. He wants us to know He is near. He does not want us to be anxious, but rather He wants us to come to Him with a heart of thanks and hand over our troubles to Him. After we do that He will grant us the peace He has and will guard our hearts and minds in Christ Jesus. Then, because we humans don’t listen well or pay attention to much of anything for long, He drives the point home by making it as simple as telling us to “THINK ABOUT THINGS THAT ARE TRUE, NOBLE, RIGHT, PURE, LOVELY, ADMIRABLE, EXCELLENT, AND PRAISEWORTHY”. Do you see what I see here? How on earth can we worry or be anxious if our minds are concentrated on GOOD THINGS??? How can we not allow our gentleness to be evident to all if we always concentrate our thoughts on GOOD THINGS? How can we not be thankful to God for all He has done, instead of always finding things we think He “should have done”, if we are always focused on true, noble, right, pure, lovely, admirable, excellent and praiseworthy things???

That’s my take on it. That’s what God laid on my heart to write. It was not anything I intended to write. It wasn’t even close to what I intended to write. It was not even on my radar, so to speak. But, I prayed when I started this blog that God would lead me in everything I wrote on here, that He would use me in some way to bring His glory, love and peace to anyone who might read this. It came through my hands though so forgive any misspellings, typing errors, etc. I do my best but sometimes my hands can’t keep up with the thoughts God places on my heart.

Now, here’s the health update. M was able to be at the doctor appointment we had on Sunday afternoon. He is the husband, he is the provider, he feels the need to protect me, love me and take care of me, and he is a true man. I mean that in the best possible way, but men often want to just “get down to brass tacks” so to speak. He wants to know the “big picture” idea. What do we do now to get the seizures under control (I’ve had 2 more since my last post)? He needs to know this because we cannot push my body any further with the medications without getting the seizures under control. These seizures are fairly big speed bumps on my road to getting home. Finally, he asked that question that I have not wanted to ask – the one about WHEN the doc thinks I will be able to get on oral meds and come home? It’s not that I didn’t want to know when I could come home, it’s that I know after a couple of decades of declining health, that there is no way to tell how my body will respond to the different treatments, medications, etc. Also, there’s the biofilm issue, meaning every time we open more biofilm we have no idea what will be released into my body. I guess sometimes opening biofilm is akin to opening Pandora’s box with possibilities of new illnesses coming out that we haven’t thought of or that I have been tested for and gotten negative results. The answer was what I told M it would be – just a guesstimate. The doc's “guesstimate” is 6-9 more months and it was said that “every cell in her body is diseased”. And the guesstimate is based on if my body finally stops fighting against me and starts fighting WITH me. In the past 6 months my body has shown no signs of wanting to cooperate with us in our quest for health. I almost feel like my immune system is mugging me at gun point every day – stealing all I have, beating me up, and leaving me for dead. Don’t know where that analogy came from, but it seems fairly accurate since the seizures do beat me up quite a bit and my body is so very tired.

Bright side, yes there is some good news, the latest biofilm stain showed smaller biofilm communities so the blood work confirms what we knew was happening – we are breaking down that biofilm and getting these infections (bacterial and viral) to come to the surface where the drugs can knock them out. We are making progress. One of my treatment friends, Stef, recently reminded me that “slow and steady wins the race” and she is right in this case. I cannot push my body harder, I cannot fight any harder than I already am, but it is nice to see a picture of some progress. The other picture we looked at was a stain of my red blood cells. The first one I had done was last January and it showed Bartonella attached to blood cells but nothing in the blood cells. The doc says that’s because the blood cells were hiding in biofilm we couldn’t see. For those non-medical folks, your red blood cells should be round, circular, whatever and have smooth round edges. Most of mine looked that way last time. This time however, they were spiky, misshapen, stacked onto one another – basically it looked as if someone had taken a chainsaw to them and split them apart haphazardly. The doc says this is due to the Babesia (the horrid illness behind my seizures) and it shows exactly what we thought it would show – damage to the red blood cells. Red blood cells carry oxygen to the brain – and everywhere else in the body – and the Babesia is attacking my red blood cells and tearing them apart. This causes a few problems, as one would expect. First, the lack of oxygen to the brain leads to the seizures. Second is that killing the Babesia leads to toxins in the blood that cause me to have extreme headaches and I think they also cause my extreme noise and light sensitivity. I literally wear sunglasses the bathroom due to the bright lights and I hurry out as soon as I flush the toilet and quickly shut the door because the simple sound of the toilet flushing kills my ears. I cover my ears a lot these days and feel that I look like a little kid who doesn’t want to hear the word “no”! Finally, the red blood cells that die off have to go through the spleen and I’m overloaded with them so my spleen is swollen and hurts. Not a bad pain, but I do compare most pain to kidney stones, so who knows what “bad” is. My bad pain could be someone else’s “good” or it could be someone else’s “horrible”. It’s all subjective. Main point is that there isn’t much we can do for it beside keep me off my feet (okay I’m laughing as I type this because those of you who know me know I haven’t been ON my feet for quite a few years – haha).

We did try to move me to a “private treatment room” to cut down on noise, but unfortunately most patients in the private rooms are in there because they have to be in a bed, or in a wheelchair, or have more extreme physical problems than me. At least, that’s what I’m assuming because both times I tried treatment in there it was louder than where I was previously. It was a bad idea to try it. I knew that, but M thought it would force me to rest some more than I do when I get to chat with my treatment friends and the doc has been suggesting it for a few months. Needless to say, I will not be in there again. The very first time in there I had a grand mal seizure that started around 5:25 and we were able to leave around 6:15 – but my sweet nurses stayed late with me, bless their hearts! We had adjusted my seizure meds since I don’t do well with pills due to absorption issues. So, we got it in a sublingual form (just means it melts between your cheek and gum) which is the fastest way to get it into your blood stream outside of injecting it into your IV. Even though the medication melted as I walked into treatment around 3:10 it wasn’t enough to keep me from seizing. I’ve found that change in my environment is very hard on me as well. Sounds odd, but the days that mom leaves and M comes in are hard on me because it is a change. When we had another girl put in my treatment room, she knew I had seizures and was being so quiet as to not set them off, but I still seized. Not her fault at all, but I think it was just the change that caused it. Change apparently equals stress and stress seems to equal seizures. We’ll continue to work on it and I will continue to fight every day with the strength that God gives me as I pray to Him for wisdom, fortitude, a loving attitude, sympathy for others who are fighting these diseases as I am, but who have different symptoms, pain, exhaustion, heart trouble, etc. I also pray that this blog gets out a message of God’s everlasting love and that it allows people to know about a disease that no one seems to know about and that several doctors refuse to believe in.

I’m blessed to be here. I hate being away from home, but God led me here and here I will stay until He leads me on back to Birmingham or anywhere else He feels I should be. Thanks again for reading a short story. It’s hard to write these. I’m not supposed to be on the computer, but it’s Christmas and I wanted to post what God put on my heart to post. I just wish He would edit it for me too…heehee. Merry Christmas my dear friends!

“She will give birth to a son, and you are to give him the name Jesus, because he will save his people from their sins.” Matthew 1:21

Much love to you all!
K