Hey everyone! Thanks for keeping up with our journey. I know that I’m not always the best at writing lately, and truth be told it’s because I have a lot to process (I’ll explain- I promise.) But also, I don’t want to bog you down with “well today I woke up at 2pm and laid around watching Netflix because I had about as much energy as a sloth”. It’s a far cry from what anyone wants to share about their life and a farther cry from what someone else would want to hear. Don’t fret- for those of you who have been praying, I will give you an update on my health. But please allow me to share what’s on my heart first.
My husband. Ya’ll know about Dan- and if you have had the pleasure of meeting Dan, then you probably have never forgotten him. He is charismatic, funny, and can make anyone around him comfortable. He also has a smile to that’s to die for. We have had a LOT of time together these past 19 moths (yes- it’s been that long that I’ve been ill- and yes I’m still counting… no, I don’t have a time frame of when I’ll be better. But that’s not my point here… bear with me) and it’s something that I’ve truly cherished. The time we’ve had is something that most only get when they’re retired. We wake up together, we eat together, we get groceries together, we do errands together, doctors appointments together, cook together, I mean you think of it, we’re rarely apart unless Dan has some weird training thing or an errand that I simply don’t have energy or the desire to do. This is unheard of for a young couple in their 20’s and yet it is something that we’re able to do because the military understands that I cannot live on my own. Some couples, would be sick of each other by now, but we are grateful- yet it’s a hard situation.
Dan looked at me the other day driving down the road, and very casually said “You know I will never leave you, right?” I replied, “Well, yeah.” He said, “Good.” And thus began our conversation which I probably took for granted. My husband is truly a superhero. The woman he married, the young, vibrant, energetic, perfectionist who is super capable has gone through a lot these past 19- months (you know that). But standing beside me the whole time was my strong but worried, loving husband. He never once wavered, never once left my side and I even remember him carrying me around the house so I could still have some independence. My husband has shown me what true love looks like. He’s not always great at romance with flowers, and candlelight dinners. But he has never once let me walk this very long, hard road alone- even when it gets hard for me he is behind me pushing me and telling me that I am stronger than I think.
When I was young, I thought love was always in feeling. I thought it was the teddy bears, flowers, candles and romantic dinners. Now, my opinion has changed. Love to me is my darling husband who every time I have a random chest pain gives me the most concerned look. Love is him snuggling up next to me to keep me warmer because my Reynolds Syndrome is acting up and I’m like an ice cube. Love is him telling me that they will stop the xy and z problems and that I’ll get my health back and even if I’m never 100% back, that he’ll love me just the same, that is true love to me. I just needed to let you know how blessed I truly am. π
In case you didn’t know, I love my husband. π He really is a super hero- I swear, and not just because the back of his uniform looks like a cape. (Sorry, that was corny, but I had to..) Anyway, I’ve been sitting on this information for a while. I needed some time to absorb it, understand it, process it, and go to the doctor to figure out what we’re going to do about it. My Lyme culture came back negative. Normally, this is where I would jump up and down and throw a party and say “Beasties beaten!!” and claim remission. But not this time. This feels different, I don’t feel better. In fact, one day I was without my anti-seizure medication and I started to convulse again- not good! Therefore, I know something is up! Back to the Lyme doctor I go- luckily he’s amazing and doesn’t think I’m making this up.
Basically, here’s the scoop: When I had my Lyme culture taken, I was only off antibiotics for 4 weeks, however I had been taking antibiotics for over a year- meaning I was still probably more antibiotic than human at that point. So, he wants a Lyme Culture redo and to check me for ALL co-infections (it’s a LOT of blood)- I haven’t done this yet, because my sleep cycle is a little wonky and I need to be awake in the morning, since the bugs are more active in the afternoon. He believes that my Lyme could be in remission but that I could have a co-infection(s) that are making things difficult.
One reason he thinks it’s a co-infection in the brain is because of a test he does for balance. He tests the equilibrium to see if you will catch yourself or if someone else will have to catch you. To give you an idea, I have NO balance. To perform the test youΒ stand with your feet together, arms to the sides, head back, eyes closed. You should have your equilibrium catch you and not fall- I’ll fall. Last time we did this at the Dr.’s – Dan had to catch be because the Dr accidentally let me go too far- oops. π
I’m also now on a new thyroid medication. Praise the Lord!!! I’m praying that this helps with the sleep problem and the energy of the sloth problem. (If you thought I was kidding in the intro- sorry, I wasn’t.) My anti-seizure medication has also been upped and may need to be changed depending on how things go. So, overall I’m a bit of a mess but we’re working on patching me back up. My Lyme doctor is amazing and everyone in this area trusts him- I just have to wait for my test results, which I can’t get until I go get the blood taken, which I can’t do until I wake up. It’s a vicious cycle.
Thank you to those of you who are praying for Dan and I. We appreciate it more than words can say. Because of my seizures, we have had to cease going to church due to the loud sounds, lights, crowds, frequencies, ect until I get them controlled- it’s been very draining on us. The Lord created us both as extroverts- we NEED people, so we are doing our best to get our fellowship in elsewhere and get our worship in at home until I can go back. Please know that we love you all, we appreciate your prayers and your support- this has been a really long, hard journey on both of us and we know that it’s not over yet. We’re grateful that we serve a God who sustains us and gives us just what we need as we need it.
We love you all and wish you enough. Happy Valentines Day!
XOXO,
De