The Results Are In!

Hey everyone! Life for Dan and I has been pretty boring lately. School has been consuming Dan and thus, I haven’t had the computer. Sorry it’s taken so long for me to update you. Although, to be fully honest I had to take some time to digest everything. Though, I have a lot to share with you medically, I also have some fantastic news. So let me start with the good, before I tell you what’s new with just me. 😉 (By the way, I’ve been writing to you for a while in my head… you just can’t read it till I put it down here…)

So to begin… Dan. You know, that loveable, crazy, amazing man I married? Yeah, him. Well, he has been working so hard- in fact he’s on his last week of  18 credits in 8 weeks. Ya’ll I can’t even express how proud I am of him for doing so well in all 6 of his classes. (Yes, 6 class at once for 8 weeks- I told you we haven’t had a life). While he’s been doing this, he has managed to take me to doctors appointments, visit my family in North Carolina, and somehow still help me a bit around the house all while keeping his grades up. Did I mention these are law classes? So needless to say, it’s been tough for him (keep those prayers coming please!). Anyway, once this week is over (finals are on Sunday) he only has one more class until he is officially GRADUATED!!! Let me say this again- HE HAS ONE CLASS TILL GRADUATION!!!!!! To say that we’re excited is a bit of an understatement. He’s been working so hard since I got sick to finish his degree, and it’s finally here!!

So that’s my fantastic news- just had to brag on my hubby for a bit. Now, to tell you what’s going on with me. 🙂 The good news is, I don’t have anything insane. Remember, the spinal tap? They tested for EVERYTHING. Fungus, brain tumor, bacteria- you name it they tested for it. Fortunately (yet unfortunately) the results are negative. There was nothing determinable in my spinal fluid. So my neurologist has put me on new anti-seizure medications (the first two caused allergic reactions- not fun) and has claimed that it is Lyme and Bartonella in my brain. Fun, right? I seriously thought we were done with this stuff.. guess not.

A couple weeks after the spinal tap, I got the final results form my Lyme culture… the one taken in February or March. As it turns out, I am not in remission. My Lyme and Bartonella are in full effect. Which ironically, was a relief to me since I’m still having balance problems, seizures, and I run into things (I promise I see the door frame but for some reason I still bump into it). Digesting that I’m not in remission like I had hoped, has been a process. I can’t say that I’m shocked, but I will say that I’m sad that this fight isn’t over yet. Two years is a LONG time for anyone to be ill. Dan has been great this whole time, though the spinal tap really freaked him out.

So what is to be done now with my Lyme/Bartonella? My current Lyme doctor has me on a new antibiotic. However, I’m not feeling any different. With Lyme, if you feel like crap, it’s killing the bacteria, if you feel fine… it’s not doing anything. Unfortunately, I feel fine currently. I have an appointment to see him at the beginning of August and hopefully create a treatment plan. If he doesn’t know what to do for me, then I will have to make an appointment with a very specialized doctor in Washington, D.C. Ya’ll, I don’t want to do it- the cost is enormous, but I know my health is worth more. So, please pray that my local doctor can figure me out.

As for our fun adventures. We’ve only had one since we last spoke. Dan and I spent the weekend of the 4th in North Carolina. It was great to see my parents and we also got to catch up with our friends Kevin and Rachel. Did I also mention, that one of my best friends, Beka turned 25? Well, she did and so we were able to make it to her birthday party! (That was the main reason we went to N.C…. shhh don’t tell the others 😉 ). It was really warm, and Dan had a ton of homework but it was still great to be able to spend time and see everyone. It’s hard when you live so far away from some great friends and family. (Though, we are blessed to be 15 minutes from Dan’s parents and oldest sister.)

Anyway, that’s been our life. Dan in school, me doing what I can to help him and processing what to do for me as our time here will come to a close soon-ish. We’re praying Dan gets his contract soon (August..?) and that the transition to officer goes smoothly for him. Though, we’re not sure when he would be leaving for OCS (Officer Candidate School). When he goes, I will be able to stay behind, and hopefully function lol. I do have a friend who is willing to move in with me when the time comes so that way I’m not alone and she can help me do things I can’t (mowing, vacuuming.. anything loud).

For those of you who have been praying for us these past 2 years. THANK YOU. We always feel so blessed when someone tells us that we are in their thoughts and prayers. I ask that you would continue to pray for us as we continue to navigate the medical waters for me. Also, please pray for Dan as he finishes his degree- senior-itis is REAL. We love you all and thank you for sharing in our journey.

XOXO,

De

De’s Next Steps

Hey everyone! I finally have some news to share with you regarding my health. 😀 It’s taken Dan and I both some time to digest everything but now that we’re going in a clear direction, I feel ready to share what’s going on in our journey with you. It’s been a long road from where we started (22 months and counting) and I NEVER thought it would take this long to get back to health (and I’m still not back yet- yikes).

However, let’s not focus on the negative and let’s get you caught up to speed. 😉 So- a few months ago we found out that Bartonella is still in my system (it’s a co-infection of Lyme disease, which I have but MAY be in remission… we’ll know for sure in a few more months). My Lyme doctor gave me new antibiotics in hopes that would treat the Bartonella, but since I’ve been having a lot of neurological symptoms requested that I go see a neurologist. Apparently having your vision go blurry, loosing your balance, brain fog, and a host of other things simply isn’t normal- go figure lol. So, just to be on the safe side, a neurological consultation would be in my best interest.

It took a while, but after seeing my family doctor he agreed with my Lyme doctor. So, I went to see a neurologist. During this time, we figured out that the antibiotics that the Lyme doctor had put me on weren’t touching a thing. In fact, they just made me miserable (insert insomnia state here… ugh)- so my Lyme doctor said the words that make every patient’s world come crashing down, “I’m not sure what to do for you right now..”. So he has to wait for neurology to see if that essentially makes him “un-stuck (fun, right?).

So what did the neurologist say? After reviewing my MRI and EEG that I had done specifically for her, there is a brain lesion in the right frontal lobe which is essentially bigger and more predominate than before. The EEG read abnormal as well. The appointment however, was encouraging considering. Basically, whatever is in my body has gone into my spine and up spinal fluid to leak into my brain. Due to where the brain lesion is, the neurologist just wants to rule everything out before she makes a call on how to go about treating what is essentially infecting my brain. She does believe in Lyme and a type of Lyme that is hard to treat, and she did seem to be open to the possibility that this could be Lyme or Bartonella in my brain (which is the belief of some of my other doctors).

So what is the plan? The first thing we’re doing is to switch my anti-seizure medication. Prayerfully this new stuff (which I believe is ultimately stronger) will work. The next thing is a spinal tap which is being done on Friday, May 5th at 11:30 (prayers for me and the doctor please). After that I see the neurologist again on May 30th to discussion treatment options (though when we talked in her office, IV therapy was already being discussed…).

This is where we’re at right now. It’s not a lot of answers, but it is a step in the right direction. I am praying that this is our answer, that this is the beginning of where I start to fully come back to living. Right now I am sleeping a lot, and most days it hard to function, prayerfully they can figure out why and give me something to fix the problem altogether and help give me a life back. However, I know who holds my future and I trust He has a purpose and a plan for this.

For those of you who are praying for us, THANK YOU. I am asking that you continue to do so. I know that it’s been a long (almost) 2 years. I never would have imagined it would take this long to get to where I am, and certainly I would’ve thought I would be completely better by now. However, that is not the case. Please be praying that this anti-seizure medicine is the medicine I need. Dan and I are dying to get back to church, but until I can handle lights and sound and crowds, church is simply not a possibility- and for the two extraverts that we are… it’s hard. Also, please be praying for me and the doctors tomorrow (May 5th) as I have my spinal tap. Finally, as always- please be praying for Dan as he is always by my side and watching me go through this. If you’ve ever had a sick spouse, you know it’s hard but with a chronically ill spouse the dynamic changes to climbing Everest. He is truly the strongest man I know, and he never stops loving or caring for me- even when things get hard or scary (like when my chest decides to randomly start hurting but I know better than to go to the ER because they say my heart is fine.. yup, Dan is awesome ya’ll). So please, don’t forget to lift him up in your prayers- also… he’s almost done with school- so he could use the extra support there. 😉

If you want to know how we’re handling it all- to be brutally honest, it’s a little overwhelming. The idea that I have a brain lesion from something in my body that is essentially trying to take over- just sounds like something out of a sci-fy movie to me. None of this seems like it is real or even possible- it all started with me just feeling a little tired and being weak. To have escalated into all of this, just blows my mind. Everyday I am humbled and reminded that I am not who I used to be. Yet, I remember that my life is a testimony to the One who can do great things He will use this for something good (although I have no idea what it is yet)- and that is what I am putting my trust in. That God will use this for good and that I will not be beaten by whatever is trying to overtake my body- instead I will fight and by the grace of God, overcome it.

Thanks for sharing in our journey with us. We love you and thank God for you.

xoxo,

De

 

 

Birthdays, Broadway, and Boring Days…

Hey everyone! I have really been slacking on the updates. Partly because we’ve been busy (yes, I have things I can talk about- what is this?!), partly because I’m processing, and partly because well- as you know, Dan is in school and hogs the computer. 😉 However, since we last spoke I have aged a year (yikes), Dan and I jumped in the car with some friends from N.C. (okay they came to us first) and we went to New York for the day and saw a Broadway play (bucket list item), and that’s where the fun ends. I have gotten more news from the doctor (the test results are in) and Dan has been trying to keep his head on straight with 18 college credits in 8 weeks (this is why I haven’t updated)- just to name a few. So keep reading if you want to know about the ridiculousness that is our lives. 😀

Okay, so let’s start with my birthday, since that’s fun and quick. Dan and my parents surprised me with a party at a restaurant in Gettysburg. They posed it as “just a family dinner”- but when I got there everyone was there. They even did this last minute. I felt so loved and so blessed- the extrovert in me definitely needed the time with everyone. So again, to everyone to came out – I know I said it there but THANK YOU! It was truly amazing.

A few weeks later in the middle of March, Dan and I already had planned with Kevin and Rachel (friends of mine from college that are now Dan’s friends too) to go to New York to see Phantom of the Opera on Broadway. The original plan was to spend the whole day in New York, but the reality was that we ended up just spending part of the afternoon there because the day was SO. DANG. COLD. Seriously, in the 20’s, and if you know me- I have an autoimmune disorder that causes me to literally not handle the cold. However, driving to New York, we all agreed it was weird to not see the twin towers and once we got to the city, we got through the tunnel, and tried to find a place to park…with no luck. Then we took a wrong turn just to go right back out the tunnel back to New Jersey- all within 15 minutes. LOL. Kevin, Rachel and I, thought this was hilarious. Dan, who was driving.. not so much. But this turned out to work in our favor.

Have you ever heard of Hoboken, New Jersey? That’s where we ended up parking. You probably have. It’s the home of Cake Boss. In fact, we parked right around the corner from Carlos Bakery, and just happened to spot it. So of course, we stopped. Yes, the cupcake I had was amazing. And yes, the place was packed- but we weren’t going to not stop. Our next stop was to go find one monument before the show, but instead we went to the Hard Rock Cafe and hung out for a while (2-3 hours for dinner) since it was right around the corner from Broadway. Then we went and enjoyed our show before driving home that night. It was a long night, and we all forgot about the “spring forward” thing, so we made it home at like 4am.. needless to say, we slept in.

Rachel and I outside Carlos Bakery

All of us outside the Theater after the show.

Just before Kevin and Rachel came in, I had gotten my test results from my Lyme culture. Or rather, the first part (it runs up to four months, so something else could always pop up). I have active Bartonella. My Lyme may be in remission but one it’s lovely co-infections, is not and Bartonella is no fun- so my doctor has put me on a 500mg antibiotic. To be honest, so far I haven’t felt any different and I can’t even tell I’m on the medicine. But hopefully at some point it will kick in and I will have some relief. My Lyme doctor has also requested that I see a Neurologist, so we’ll see how that goes. Anyway- that’s where we’re at… it’s not a lot of fun and I just want this to be over, but that doesn’t seem to be happening anytime soon.

On a happier note, Dan and I did get to get together with some friends and go see Beauty and the Beast the weekend it came out, which was a blast. I personally enjoyed the movie and thought they did a great job with the live action- but nothing replaces the originals (ahem, I’m looking at you Cinderella…). Anyway, since then we were pretty much on lock-down here at the house with Dan in school. He is working at a sprint pace to finish school- he can see the finish line now, and just wants it to be over and done. If it all goes according to plan, he will graduate in July. Can you believe it? With a Legal Studies degree, no less! Yes, I’m a proud wife.

But last week we did have some visitors (no I didn’t get photos because I was busy spending time… oops). We haven’t seen them since JAPAN! Kevin (a different Kevin) and his wife Jordan and their newborn came in for a day or two while they were on a road trip! It was so amazing to catch up with them again. We talk online, but it’s never the same. This was the first time we’ve seen them since they’ve had their child or since Kevin has become a civilian. It was really a wonderful time together, and I’m glad we got to have the opportunity to be on their list of people to see while they’re doing this road trip.

This past week has been busy, we did get to see Nick and Jen (this is the first time we’ve seen Nick since he’s been home from deployment)- they came up our way from the D.C. area for dinner. Also, dan has had a class all week for the Navy, and I have been home alone during the day, which has given me time to help him with getting school readings done (since he hasn’t had time). So Dan has been really busy trying to get homework done. He has two classes about to end, and three that he’s smack dab in the middle of (so finals and mid-terms are lining up perfectly for him), so he’s really stressed out.

While we do things occasionally, most of the time we’re at home- Dan is neck deep in school and I am probably sleeping or doing something around the house.. or bored. This has been a very difficult season for us as we continue to wait for all the answers on my health, plan for the future, and overall try to stay positive. This has been a long road, and it doesn’t seem to be ending anytime soon.

For those of you who are praying for us, thank you- those prayers mean more to us than us than words can express. Please continue to pray for us as we move forward with my health plan, and as Dan finishes up school (his senioritis is really kicking in). Pray for wisdom for my doctors since I am not feeling any better on my medicine (they will need to change up the regimen). Finally, please just pray for Dan, ya’ll- I can’t express this enough, Dan is in the muck with me everyday. Chronic illness is really hard for the person going through it (obviously) but I think it’s harder on the caregiver because Dan can’t do anything for me but love me, and pray for me and help me around the house a little bit more than normal. He’s handling this really well, but just please pray for him. 😉

We love you all and thank you for your thoughts and prayers.

XOXOXO,

De

Learning True Love… A Valentine’s Update

 

 

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. 🙂

In case you didn’t know, I love my husband. 😉 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 you 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. 😀

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

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Thankful Thoughts

Hey everyone! It’s been about two months since we last had a chat, and I figured it’s about time to give you an idea of what’s going on in the life of Dan and De. 😉 I mean, you just live to know all about our lives, right? Just kidding, I just know that a lot of you are praying for us- which is something that we cherish more than words can express, so I want you to know what’s going on and why I’ve been quiet.

The good news is, there isn’t much to report in regards to my health. So, I’ll give you a quick overview and then get to some fun stuff. 😀 So here’s the load down. I’ve been having some weird off-the-wall type symptoms. We’re talking head scratchers here. The one that had me totally freaked out is that I experience random chest/ heart pain and it’s pretty intense. Don’t worry, we’ve had a whole gambit of testing done and they can’t tell me what’s wrong. SO… basically I’m fine. It freaks Dan out though.LOL. I’m still having neuropathy in my feet and my hair is seriously falling out or at least that’s what it feels like.Oh, and I can’t forget my random little seizures- they’re my constant friends. Don’t worry though, you can’t tell when I have one, my eyesight just goes and for those of you wondering what it’s like, imagine having glasses to see and then taking off your glasses and EVERYTHING is SUPER blurry and you can tell where things are and that something is there and what color it is, just not fully sure what it is… THAT. So if that’s as bad as it gets, I’m not complaining. 😉 I’m starting to get my fiery spirit back and while I can’t wake up at my desired 5am, I am usually up by 9am- which is an improvement from 1pm! So hey! I’ll take it!! So, am I getting better? Yes, slowly- like a sloth. Do I feel back to “me”- not really. I feel like there’s something I’m missing, but I’m still waiting to hear back if my Lyme is still active or if it’s in remission, and that will determine a lot about further treatment and where we go from here.

Now for the fun stuff- told you it would be quick on the health! This week is Thanksgiving, and it’s had me thinking a lot about how thankful I truly am for this crazy little life that Dan and I have been given. It hasn’t turned out anything like we thought (we thought that we’d be in our 2nd year overseas…) but everything has worked out for our greater good. I’m grateful for those who have been praying for us, those who have made meals for us, who have encouraged us and those who have simply walked along side us during this incredibly long journey and are sharing in our life with us. This blog was started to share our overseas life with you, and instead has simply become our mundane everyday life and how I’m doing health wise (let’s face it, it was scary last year- I have photos to prove it). I’m thankful for all of it. I’m grateful for a husband who makes me laugh and who provides for me and is studying like crazy this year (yup, that’s pretty much all Dan does). While right now our life is boring, I’m grateful for it. Do I miss walking the streets of Tokyo and going to eat Ramen? YES! I won’t deny it at all. But I’m so grateful to be back home with those who love us and to see friends and family who we didn’t think we’d see for three years at least.

In fact, a few weeks ago, all of Dan’s siblings were in town. Yes, we live near one but his sister from Connecticut came in with her daughter (her husband couldn’t make this trip) and his brother flew in from Texas. To give you an idea of how big of a deal this is, the last time everyone was altogether was at our wedding, just over two years ago. So my mother in law was thrilled to have all her kids home, and of course we got family photos to commemorate the occasion. These are the kind of things we miss out on when we live far away. While the reason we’re home isn’t a “good” reason, our time here is precious and we are cherishing it.

Now, I told you how much I cherish my husband our relationship. To give you an idea of “us” and how we are…just the other night Dan and I were driving home and the heat in our one car apparently isn’t the best (this was news to us). If you know me, you know I HATE the cold, and I’m not happy about winter making its debut. I’m REALLY not happy that I saw flurries and it’s only November, and I’m a wimp. Dan on the other hand is a human heater and can take the cold with a grain of salt. For some ungodly reason it doesn’t bother him. The following conversation ACTUALLY happened. I seriously need to record our conversations because I’m not exaggerating this…

Me: Dan it’s cold, turn down the air until it warms up. (I have the sweater he took off OVER my head like a hat.)

Dan: It’s not that bad there’s just a twinge of cold. Like when you take a bath and the water is warm but there’s just that twinge of cool water.

Me: That’s called cold water and AC! Turn it off I’m freezing!

Dan: (Laughing) That’s pretty good, okay.. okay.

*Waits a few minutes to turn back on the air to check it out*

Me: *Exasperated* Now it’s warm with a twinge of cool air!

Dan: At least it’s a twinge in the right direction.

Me: *Shakes head* I can’t win.

Folks, our lives may be super boring right now but we can at least entertain ourselves. Even our spats are funny. We certainly do have little everyday adventures. I’m thankful for my husband and the little life we share- even if it’s nothing like what we planned, I think it’s better than we could’ve planned.

Thank you for sharing in our adventures, the exciting ones and the boring ones. Thank you for your prayers and your support. Please know that we are truly grateful for you and we hope that you enjoy your peaks into our little life. Hopefully soon we’ll be back to having adventures and being more interesting. 😉 We’re sending our love and we hope you have a wonderful Thanksgiving with family and friends.

Until next time,

De