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

The Many End of Year Adventures of Dan and De

Hey everyone! So I have a fair amount to catch you up on! Can you believe it?! Our holiday season hasn’t been super boring. However, I haven’t been that great at documenting it on camera. What can I say? You win some, and you loose some. So, I have some good stories, but I don’t have great photos. Sorry. It is what it is. To be honest, it’s taken all I have to keep my head above water, or so it seems. My energy level has taken a dive with all the holiday stress, but hey- it’s a learning curve. Dan’s been handling me and my lack of abilities beautifully, he’s simply amazing and makes me rest even when I don’t want to. Have I mentioned how amazing he handles the fact that I’m chronically ill, even when I don’t want to admit it to myself?

Anyway, Thanksgiving was spent with Dan’s side of the family, which was wonderful. His mom cooked and the food was amazing. Compared to my family (There’s four of us when it’s just the immediate family, and by four I mean it’s mom, dad, Dan and I.) Dan’s family is HUGE. He’s the youngest of four, and while his brother is in Texas, there’s still a crowd. So it’s always fun. We got to catch up with some family from out of town and see our young niece. All in all, a very successful Thanksgiving.

Two days later we embarked on our Christmas gift from my parents. Yeah- being an only child has it’s perks and Dan is now experiencing some of them. 😉 We went on a family vacation. It was super enjoyable. We enjoyed some time on the beach and while we weren’t always around one another, we did get to enjoy some family activities. My grandfather and step-grandmother even joined in on the family vacation. In the end, we all agreed that it was the most relaxing vacation that we have ever taken. Though, it probably had something to do with the fact that we all came and went as we pleased, we were all adults and there was PLENTY of food.

Dan out on the beach.

Loving the beautiful views.

Went for a walk out by the water.

Once we got back, I barely had time to breathe, okay or that’s what it felt like. Because a few days later was the Army vs. Navy football game. Now, if you know us personally or read the blog regularly, you’ve figured out by now that Dan is in the Navy (for now at least). But this year, he had a special opportunity to go and volunteer at the game itself! Please understand that out of the two of us, I watch this game religiously, he could care less but yet because he is the service member, he gets to go volunteer and gets the free seats at the game! Yup, that’s how unfair life is. I must admit though, on game day, I wasn’t too mad since I had a party with some girlfriends and he got to freeze his butt off out in the cold. 😉 Dan ended up coming home early, and we lost the game (first one in 15 years- just saying) but it was still a really fun day, and I’m hoping to have another football party next year since it was so much fun. 🙂 Who knows, maybe it will become a tradition for us.

So the game was on Saturday, and then on Tuesday we were gone again, so this was a week and a half after being home I think, if that. We had to go to New Jersey this time. Can you believe that? What is in New Jersey you ask? Dan’s Command Christmas party. Yup, we had to drive there for that. Now, military events tend to scare me. There’s a lot of pomp and circumstance and formality, so I tend to try to look nice, be quiet and mind my manners. It works well. Especially since at this command I’m the wife who is really sick and my husband stays home and takes care of me. Dan and I don’t really know anyone here and we won’t get the chance to know anyone since Dan isn’t really working here, it’s just how this duty station will go, no big deal but it does make these type of events more awkward.

Before the Christmas party though, Dan had mandatory training. This left me in the hotel room all day. Part of me didn’t mind this since we had just been on vacation, had a football party and then driven to New Jersey, I needed the rest- all the rest I could get. I’m learning that I can’t do all the things I want to do anymore. My body likes maybe one big event per week and that’s about it, after that I need lots of sleep to keep up. However, there also wasn’t any food around. So this created a major problem for me. By the time we got to the party, I was struggling to stay my perky, well mannered self. In fact, at one point I’m pretty sure one of the other couples heard me say to Dan that I was going to eat my arm- oops. Oh well, they would have been in the same boat if all they had was a little bit of Starbucks early that morning too!

Luckily Dan and I sat with his division, or basically people he knows and because I go wherever Dan goes, I somewhat know when I’m not in the car. I also got to meet some of their wives, which was a nice change of pace for me. Unfortunately the food left much to be desired for us and caused me to become physically ill. So Dan and I had to leave early. However, we still made the most of the evening by going to Outback Steakhouse for “real” food.

Finally, about a week later we come to Christmas. Can you believe all this? I told you we’ve been up to a lot. Just before we were to leave to spend Christmas with my parents, we met up with Kevin, my friend from college and now Dan’s good friend. He was in D.C. for training so we did dinner and dessert at a different location. Dinner was at an awesome restaurant that sounded like a family Pizza place but totally wasn’t, instead there was white table clothes, people in business attire, and a wine bottle art piece in the middle of the restaurant. The food was fantastic, but pricey, so we decided to take dessert elsewhere.We ended up at a pub that had coffee, specialty drinks and some awesome desserts. It was fantastic! At the end of the evening, we had to take Kevin back to the metro, which wasn’t a big deal- but here’s where things get interesting. Dan put his wallet on top of the car (something he NEVER does), put his coat in the back and then got in and drove off.

As we get on the on ramp to the highway, we hear a thud, and figure we had run over something. Dan asks what the sound was and Kevin says that something is laying in the road. Dan continues driving. We drop Kevin off and say we’ll see him later and then we head back home. Luckily, I have to use the bathroom so Dan starts looking for a place for me. When he finds a gas station, he decides to fill up and this is where things go south, fast. I come out of the restroom only to be half scared to death by my darling husband who informs me that his wallet isn’t in the car or on his person. We then realize the horrible reality before us, the thud we had heard on the on ramp was Dan’s wallet! We’re 45-minutes away, and we have no idea if the wallet is there. The wallet has all of Dan’s personal information, government ID’s and Christmas money we were given. Yup, this is really happening and it could only happen to us. Then the worst sinks in, we can’t visit my family if Dan doesn’t have his driver’s license, which is in his wallet.

So we decided to take a risk and go back to see if we could find it amongst the on ramp. But which on ramp was it? We text Kevin who’s phone was about to die and we begin to pray. Luckily Kevin has an awesome memory and could help us out and we between him and ourselves we remember where we were. Now time to backtrack. Dan gets off the on ramp and pulls off to the side, and against all odds we spot the wallet! Even more amazing we found all the cards and documents untouched including the Christmas money! God is so good! It was truly a Christmas miracle. Needless to say, Dan is making copies of everything in his wallet.

Now, Dan and I spent Christmas with my family. So it was just the four of us, which means that it was pretty quiet. We played a lot of games, had some great food, went to Christmas Eve service. However, our favorite part was confusing my father about his Christmas present. We bought him a creeper for his garage to help him work on his cars. The box was over half my height and just a big rectangle, he couldn’t figure out what it was, and we didn’t allow him to see it until Christmas Eve. I kept telling him “it’s something on your wish list.” To which he would reply, “I didn’t know I had a wish list.” And then I would sing, “I know what you’re getting for Christmas…” over and over again. Needless to say, it was fun. Mom enjoyed getting in on dad’s fun too since she knew what we got him, and she knew what her main gift was (mom doesn’t like surprises, though I still got her a small surprise- a Mr. Tea man who relaxes in her mug for her loose tea, yeah it’s funny) and could enjoy teasing dad. All I can say now is, sorry dad but you’re too easy to pick on.

Mom and dad spoiled us as always, we didn’t get as many material gifts this year but- as you read above, we got a vacation. A fully paid 5 day vacation. I got memories and my parents got us an ornament from the vacation for our tree, which was super sweet. It was also nice to collect memories over things.Hopefully it’s something we’ll consider doing again.

As we are going into 2017, Dan and I are excited for what’s to come. However, 2016 was a truly unique year for us. In 2016 we:

• Celebrated our 2nd year of marriage.
• Moved back to the United States
• De got a PICC Line put in and taken out
• De’s had a roller coaster in health
• Dan has been busy in college
• We took our 1st family vacation
• Dan was in one of his best friend’s wedding
• We went to my college best friend’s wedding
• We’ve been able to spend more time with family
• Dan got to see the Army vs. Navy game in person

Hopefully 2017 will bring on many fun adventures. Thanks for sharing in our life with us! We love you all and wish you the Happiest of New Years!

 

 

 

Like An Arrow: Going Backwards to Push Forward

to the Hey everyone! It’s time for another update from us. 🙂 There’s been a couple fun things that’s happened since we last spoke, so I guess our lives aren’t ALWAYS boring- but to be honest, for us it’s mostly been boring and a lot of sleeping. Sleep seems to be the main event of our lives, to give you an idea- I sleep at least 12 hours a day and up to 15 hours. Dan sleeps 9 or 10 hours a day usually (he’s still not feeling the best), so for us to actually get out and do things can be a challenge, simply because we’re just trying to fight to get out of bed.

Anyway, we were really blessed a few weeks ago with an awesome lunch date. It was one of those “once in a lifetime” kind of things. Part of our Japamily came to the United States and was only a few hours away from us, so they met us for lunch. That’s right, they flew half way around the world and met us for lunch and some shopping. We felt special. The last time they saw us, I wasn’t hardly able to stand on my own and while I still have seizures and I get tired, I am doing far better now than I was last year when I left. Our time together was precious to say the least.

Mrs. Esther had taken me under her wing when I was in Japan and showed me how to get around a bit off base, and Dani is like a little sister to me. Dan and I both talk to Dani frequently still via Facebook, but it’s not the same as getting to see them face to face. When we were waiting for Dan to get off the boat and trying to figure out what was going to happen with me health wise, Mrs. Esther gave Heather a break and helped to care for me. So to see them again was truly beyond words, and Dan and I hope to see them again.

Let’s see, there’s more. 😉 I’ve recently had a health setback. But it sounds more like an advancement. I’m off all medication related to my Lyme. This is because I went to the ER for a seizure that lasted for 3 hours. The good news is, there’s no brain damage from the seizure (that’s always the concern), the bad news is, they can’t seem to figure out how to control my symptoms, even with all the medications and the PICC line. So my doctor has decided to see if my Lyme is still active, but to to do that, I have to be off medications for a month and then go through a Lyme culture (blood test where they’ll actually grow Lyme- it’s really cool and the most accurate Lyme test available) next month. So until then, I get a break from my 20+ pills a day, and I’ll take it, even if it is most likely temporary.

It’s been a weird time being off meds. I can tell something is off with me, but it’s hard to fully put my finger on it. Sometimes I ache, sometimes I don’t. Some days I have energy, some days I have none. I expected to feel a lot worse, but it’s only been about two weeks, and I’m just now starting to really go downhill, so it will be interesting to see how the next 2-2.5 weeks go.

I’ve had some energy and when we had Beka and Keke come to visit, I felt somewhat normal even, just more tired. It was great to see them, it had been far too long. We went to Gettysburg and did some wine tasting. However, the day out in Gettysburg wore me out so the next day we had to tone it down and just do lunch and a little shopping here locally. I just can’t do things like I wish I could. Luckily my friends love me despite not being able to do everything we wanted to do, and they work with me.

Finally, just the other night Dan and I were able to see Lee and Tina, my youth pastor and his wife who are now missionaries in Haiti. Lee officiated our big wedding in August of 2014, and it’s been a long time since we’ve seen them. They had a large open house at a local church, so Dan and I were able to go and catch up with not only Lee and Tina but a couple other people from the area that we haven’t seen in a while. It was truly uplifting and great to see them.

So, to those of you who are faithfully praying for us, thank you. Please continue to do so. It’s a pretty crazy ride that we seem to be on with my health. I never know what’s coming at me next. Dan has been a real trooper through all this, it’s not been easy to watch the good days followed by bad days. Please continue to pray for us as we both are under the weather and it is difficult when both people in the household are sick at the same time. Also, please pray for wisdom for my doctor as we progress with me treatment since I am not responding the way he thought I would or as quickly as he had hoped- hence the essentially restarting with the Lyme culture coming up, which has me nervous. Please pray that Dan and I would continue to be brave in this very long trial that, in all honesty can be very scary at times, that regardless of how we feel, that we would continue to put our trust in the One who is in ultimate control and that He would use this for His honor and glory. Thank you for walking along side us during this journey.

Until Next Time,

De

 

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Let’s Catch Up

Hey Everyone! It’s been far too long since I last posted. I’m sorry I’ve been off the grid. I figured I better catch you up on the boring life of Dan and I. Ok, so it’s not always boring- or not really boring- but it’s somewhat boring or more like alarming. I guess I’ll just have to back up and explain and then you can decide for yourself what our little life really is- because I think it’s a combination of boring and odd. 🙂 But hey- it’s Dan and I, what can you really expect?

Since we last talked, Dan and I are officially moved in at our little half house. We love it here, and it really does feel like home. My friend Jamie even came over and helped me make my washer and dryer (which was given to us) look pretty with contact paper (can you say Pintrest project much?) along with a cubby thing I have as you walk in the front door- it’s SUPER cute (photos at the bottom of the post if you want to see it lol.) and she was super sweet and bought us a house warming gift- a plant. This is truly a test for me because if you know me at all, you know that I can’t keep anything alive- so I have named the plant Penelope, and yes, I talk to her often. She’s out our front door now in the lovely planter Jamie gave us. 🙂 I think Dan is convinced I’m going to kill her.. but I’m determined to make her live.

Aside from little projects, and finishing settling in, I’ve been able to see a couple of friends. Including my friend Anjoli who I’ve been talking to online for years (we lived in this area a long time ago but then went separate ways for college and kept in touch)- ok so I know her in real life people… but it’s been years since I’ve seen her in person. Well, a couple weeks ago we were able to have lunch together before she moves out west to start her O.T. job. (I’m super proud of her!). I’ve also been able to see one of my best friends Emily who has moved back into the area from Illinois. She even “babysat” me one day while Dan had training (I’ll explain in a minute, so hold your horses there). But it’s wonderful to have people around again and be in a country where I can understand everything happening around me.

Now questions about health. I get asked “how are you doing?” a lot. That’s a hard question to answer. Please understand that I was doing really well at one point, but here lately, I have seemed to taken a downward turn, and furthermore apparently Dan has decided to come along for the ride with me. Ok, so now let me backup, and pause and then press play for you. 🙂

Starting with Dan; he wasn’t feeling good a couple months back but decided that it would just pass on it’s own. It hasn’t. Now we go to Walter Reed Medical Center in DC a LOT for him. However, doctors are actively working to try and figure out what is happening. (Please be praying for him- we know it’s something in his GI area- he’s having difficulty eating, loosing weight, and he’s in pain a lot). Pretty much the doctors right now are telling him to eat healthy (which he does anyway- he eats what I eat…no white flour, sugar, ect), and to be careful about exercise (too much and it can make his stomach distended… it’s really weird). So hopefully soon we’ll know what’s going on with him.

As for me, I’m sick and tired of being sick and tired. Chronic illness and myself are not friends and this is something that I am not fond of, but will have to learn to live with… and manage… and hopefully prevent from happening again. Anyway, at one point I was working out 5-6 times a week (against doctors orders- but I couldn’t take this resting thing anymore) and I digressed pretty quickly. The doctor quickly told me that I am only to work out a max of 3x a week… yay (can you hear my sarcasm??). I was doing OK, but then it seemed out of nowhere I was getting dizzy and my vision (which I’ve been having issues with) would go completely blurry. I’ve been “loosing my sight” (I mean it gets REALLY blurry) several times a day. One day, I was up over 30 times, and ended up in the ER- that was bad just because the seizure meds they gave me actually made me feel worse than loosing my vision (go figure). So I went to my doctor, and now I’m on a higher dose of seizure meds until I can go back to my Lyme doctor to talk about Babesia (a co-infection of Lyme- something that can come with Lyme). So for now, I loose my eyesight a lot and poor Dan has to keep a pretty close eye on me because my balance is off as well (part of the fun of this), oh and I’m tired again. Just when I was starting to think I was a real girl again…

So Dan has had a couple of things to do with the Navy where he is gone all day and I’m not really supposed to be there (and I don’t want to be there at all). So the one day Jamie came and got me. She had me and her little sister (who was recovering from a double concussion) and so she had fun confusing us as to where we were going next. And this last time, Emily came over and picked me up to babysit me for the day. I went back to her house to help her with her work (they moved the office from Illinois to PA and it’s been crazy) so I did some basic administrative stuff that I love. It was a nice day out, and Dan didn’t have to worry about me while he was at training. 🙂 I’d say it’s a win-win.

Overall, I’d say that Dan and I are essentially turning into 80-something year olds. We’re doing the best we can given the cards we’ve been dealt. The last couple months haven’t been the easiest, nor do the months ahead look like smooth sailing- but we know that all things will work together for our good. For those of you who have been praying for us- we thank you, and ask that you continue to do so- especially now that both of us are ill. There are also a lot of decisions that are coming up and I am asking that you pray for wisdom for us as we try to figure out the best plan for our family. All I can really say is, we make life interesting-  it is one big adventure for Dan and I. 🙂 Thank you all for your love and support- I promise to try and be better about keeping you up to date about what’s happening in our lives, especially since we are now in a brand new type of medical adventure. 🙂

 

 

My lovely washer and dryer… THANK YOU JAMIE!!!

The cubby I was talking about… Thank you Jamie!!

Jamie took me to see her sister in a play (The Addams Family) when she “babysat” me one day.

 

 

 

 

 

 

Back to the Basics

Hey everyone! Wow it’s been a while since I’ve posted. So sorry I’ve been quiet on here. I guess there hasn’t been much to say. Since being diagnosed, life pretty much quieted down or halted it seems. I sleep roughly twelve hours everyday, so it makes getting out and about pretty tough. However we have come to a pretty good routine, Mondays and Thursdays Dan goes into the recruiting station to say “hi” (Ok so it’s more than that, but that’s basically what it feels like from my standpoint). The guys in there know me as well- they call me “Mrs.” Dan’s rate and rank which is super cute. They get excited with us when I have good weeks, especially when I walk more but they get to see first hand how the Lyme has affected our lives. They’re really supportive and we’re grateful.

Anyway, while I’ve been recovering, life has slowly been moving on. Seasons are changing. Here in PA we have gotten a LOT of snow. Luckily it has been melting pretty quickly. If you know me, you know that I like to LOOK at snow but I’m really not a fan of the cold. And now my joints REALLY hate the cold- so let’s just say that spring can’t get here fast enough. The groundhog, Punxsutawney Phil told us that we would have an early spring- since then I believed it’s snowed two to three times. I’m still hoping the weather breaks soon.

On a more exciting note, Dan and I recently received some pretty exciting news: Our household goods are in the United States! In fact, they’re in the area! What that means is that Dan and I got to do some apartment/ townhouse hunting. Within a week we found a cute half a house (it’s tiny), in a perfect location – I used to live on the road where it’s located at, so it feels like we’re moving home for me. So we will begin the move-in process on March 1st (or sooner if we can get ourselves together)! We’re super excited! It’s been a long haul since coming back on emergency from Japan. But we really feel like this is where the Lord is leading us to be.

Thank you all for your continued prayers and support during this time. This coming year will not be easy for us as I continue to recover and Dan continues in his studies and career. We’re hoping that while we’re “home” we’re able to see more people -especially as we get settled in. It’s hard to believe we’ve come back to where it all began. Please continue to keep us in your prayers as we continue on our journey and we will continue to take you with us as we venture onward in this military life. 🙂 Sending all our love!

 

Veterans Day in DC

Hey everyone! It’s been a while since we last chatted. Things just have been pretty boring and to be honest, I don’t have a whole lot to say. However, today is Veterans Day- which holds a very dear spot in my heart since I am married to a veteran and have several friends and family who are veterans. So today Dan and I decided to celebrate the day in a special way, we went to see his best friend Nick in Washington, DC.

When we got to DC, the first thing we did was grab a bite to eat with Nick and his roommate at a wonderful Greek restaurant. Then the real adventure began. We were able to go to the 9/11 memorial at the Pentagon and tour around a bit. And spend the day at the national mall. It was so surreal to be at these monuments on such a day as Veterans day, with the flowers and the eeriness of our nations capital being practically empty since everyone has the day off, it was truly a great way to reflect on the sacrifice that so many have made and are currently making (including Dan and Nick). So below are the photos from our adventure today.

Part of the 9/11 memorial at the Pentagon.

Each wing-like structure represents a person and they have lines on the ground that go to the year they were born. One direction means they were on the plane, the other means they were in the Pentagon.

The Washington Monument.

Dan and I!

The WW2 Memorial from afar- up close it’s so much prettier but so much to take in that taking a photo almost seemed disrespectful.

In front of the Lincoln Memorial since we couldn’t get any closer with all the steps….

Close up!

Sun set in DC!

Today was super amazing- I am blessed to be able to call myself a military spouse. I am proud of our veterans and thankful for our freedom.

Dear Japamily (Our Japan Friends Who Became Family)

Dear Japamily,

I want to start this open letter to you all by simply stating: I LOVE YOU! I truly mean that from the bottom of my heart. Dan and I talk about our time in Japan just about everyday, and how much we miss you all. Each and every one of you have truly enriched our lives in ways we never could have imagined, and for that we are truly grateful. So thank you to all of you for putting up with us for the past several months- you have helped us grow in so many ways. 🙂

Our time in Asia was truly way too short. We wish that we could have gotten to know everyone there so much better simply by being there longer however we are so glad to have been able to have the blessing of meeting each and every one of you. You are all so unique and truly show what America feels like in another country. Nothing felt better than after a long day of exploring than coming back on base and seeing one of our friends, it was wonderful. Or even better, going out all day and going exploring with some friends. We loved getting to spend time with you all- and you all showed us some pretty awesome places (shout out to Ramen- which saved my eating out life over there. 😉 ).

There are a few of you who when I became really ill truly stepped up to the plate, and you all know who you are- thank you! Knowing how bad my lyme is now, it is quite possible that the care you all provided, the meals, the overnight stays, the visits, the encouragement,even offering (because I’m a pretty stubborn person who doesn’t like to accept help at all)- you all may have helped save my life (not really exaggerating here either). So thank you for your sacrifices and for coming to my aid and for all your prayers, concern, and literally everything. I can’t even truly express myself well enough through this blog how grateful Dan and I are for you all.

Our time was too short, that much is true. However, military friendships are unlike any others I’ve ever encountered. You not only became my friends, you became my family. I had to call on you in my time of need, and you were there for me when nobody else could be (literally, I was in another country by myself…), and I had the honor of being there for some of you at times. My heart breaks knowing that we won’t get to have the time over there we were supposed to, but I am grateful for the time we had. I am truly blessed to have been able to meet every one of you- and I am excited to see where your lives take you. Thank the Lord we have Facebook, snail mail (yes, I still do that- though I’m not that great at it, so be patient with me), and email so that I don’t have to loose touch with any of you. I love you all and thank you for becoming my Japamily!

Lots of Love,

De

Sayonara Asia… Hello America!

Hey everyone!

It’s been a while since we last spoke. There’s been a lot happening, and to be honest it’s all a whirlwind to me. So basically, I’m just going to give you the gist, a bunch of photos and the big picture. 🙂 I have been very sick (duh, I think you probably got that from my previous posts) and Dan has been taking really good care of me. It was decided that since Japan wasn’t taking care of me and they weren’t referring me anywhere (they literally said to go back to my original doctor) Dan and I booked a flight to head home.

Traveling through the airport was quite a feat. Remember, at this point we don’t have a wheelchair. Once we got to the airport,the airlines knew that I would need assistance. You should’ve seen people’s glances and reactions to us as we made our way through not only Narita, but the other airports as well, especially when they had to get the isle chair (you know, the special wheelchair for the plane that’s super small- yes people, I was the LAST person off the plane and the FIRST person on the plane) and then whenever I had to use the restroom on the international flight- yeah… it was an adventure to say the least. Actually, our tickets told us we landed in Baltimore on Thursday- really it was Wednesday night at 11pm but it was OUR Thursday (Japan is ahead). We were SO tired. Below is a photo of how we looked going through the airports though, it’s pretty great. 🙂

Getting ready to go home after almost being gone for a year!

Once we landed we couldn’t get to a bed fast enough. But we were greeted my mother, my “Maryland mom” Mrs. Ruth, and Dan’s best friend Nick (to everyone’s surprise) and a transport chair my mom bought me. 🙂 The next morning I had blood work done and a doctors appointment, since then, I’ve had about two more. I’m working with the military (Walter Reed Hospital in Bethesda MD) and civilian doctors to try and figure out what is going on. Once I get an official diagnosis, I’ll gladly share with you. For now, just know that they are working on it and that with anti- seizure medicine I am no longer shaking like I was and I can walk for short periods of time. However, this only masks the symptoms to make my life easier and does not take away the problem. Please continue to pray for the doctors as they work to figure out what is causing all of these issues (there is over 20 symptoms at this point).

As for now, we want everyone to realize that we are in the US for good. We will not be going anywhere for a while. I’m too sick for them to take care of overseas. No worries, though, I will not be leaving you in the dark about our military adventure. We know that God has a plan for this, even if it’s not the plan we originally had in mind. For those of you who are praying for us, thank you. 🙂 I would like to request that you all specifically pray for Dan at this time since he has to take care of me, report to the military and get things sorted out. It is a very stressful time for our little family. Speaking of family, our families are starting to realize how sick I am as well and are concerned. This is going to be a very long road.

On a different note, I was finally able to get photos of our home. (Ironic right?) So I figured I’d share some of the recent photos I was able to get before we came home. 🙂

View from one of our windows.

Bread at a local bakery.

Bunny Store- it’s a children’s store.

They have Big Boy restaurants… but they’re different than what they are in the US.

Sunrise over the Pacific.

Our home

Thank you to all who have been walking along side us from afar. I promise to keep you updated. Sending all our love.

Big Changes

Hey everyone! I know it’s been a couple of weeks since I last wrote. However, there’s not a lot to say… or at least nothing too exciting. I have been confined mostly to my apartment. Heather lived with me and switched off every once in a while with Mrs. Esther and her daughter, Dani until Dan got off the boat (yes home from deployment- this a big deal) to be with me. So life hasn’t been the most fun. However, I can say that I have been able to watch some amazing movies. So that’s really cool. 🙂

Dan coming home was quite an ordeal. For him to come back, means that I’m in bad shape. I have never lied to ya’ll, and I don’t plan to now. It’s rough. Currently I have a running list of over 20 symptoms and the weird part is they come and go and interchange as they please. I’m telling you, it’s a blast living with me… Daniel never knows what to expect next. 😉 I have also managed to back to the ER (round 2) with swollen, painful lymph nodes in my neck that made talking, swallowing, sleeping and moving difficult… it really puzzled the doctor when my white blood cell count came back normal. I never wanted to ride in an ambulance and now I’ve done it a total of 3 times (by the way- not worth it… it’s not as cool as they make it seem in the movies).

So this leads me to the big question, “Now what?”. The doctors here have given up. They’re not trying to figure out what’s wrong anymore. Instead they’re focusing on getting me back to the United States where I can be seen by a specialist to try and figure out what exactly is going on. To get me back poses some more unique conundrums and we don’t have all the answers. So I’ll just give you what we know for certain. 🙂 At this point they are in the process of de-screening me medically to send me back to the United States. This means I will no longer be authorized to live here in Asia. This process could take a couple more months, time in which I don’t really have to waste. Regardless, the Navy will be cutting Dan new orders so that he can care for me since I am unable to do anything on my own. We’re not sure when all that will take place, so we’re not waiting for it. Instead, Dan has arranged to take me back to the United States this Wednesday (yup, in a few days) and he will use leave until I have an official diagnosis. When the time comes, he will fly back to Asia, pack up our belongings and have them shipped back over. He will be cut his new orders (probably close to my family since that’s where the in network doctors are). This will not affect his career negatively and we have a plan. Right now the primary concern is getting me to a doctor.

Speaking of doctors, I have a pretty funny story. Ok, so it’s not really funny but at this point, I’m keeping my head up and making the most out of everything. My mom was on Skype with me and called our family physician’s office to try and set up an appointment for me when Dan and I get back. Once they heard all my symptoms they said (according to mom persistently), “As soon as they touch down, you need to get her to an ER. We can’t handle all that here.” So encouraging, right? The doctors office can’t handle me, so they’re sending me immediately to an ER. Hey, at least they’ll be working to find out what’s causing all this mess. 🙂

This whole situation has been incredibly stressful and difficult for Dan and I. Our friends are amazing and have come around us to help us in several different ways. The fact that I am having to leave so quickly without really getting to say goodbye to everyone breaks my heart. My Japamily will always hold a very dear spot in my heart. As for coming back to the U.S. and having to leave Asia behind, I am sad and Dan is glad. I’m not kidding, as difficult as it is to live over here and be away from anything normal, I will miss everything I didn’t get to do, and I’m really going to miss our favorite Ramen shop. Dan on the other hand, while sad by the things we’ll miss out on, is excited to go home and move on in his career. Like I said, he has plans and this moves up his plans by a couple of years- which will be good in the long run. The both of us are really excited to get me somewhere where I can have treatment and begin the road back to being De.

None of this was in our plans, but we know that this is what needs to happen. For those of you who are praying for us, thank you. It’s hard to believe that soon our Asia adventures will end (especially since we had about another 2.5 years to go) and we will begin a new (medical) adventure. Please continue to pray for us, especially for Dan as he has to take care of selling our cars, packing things up, physically helping me on and off planes , dealing with the Navy, and more. I am truly blessed to have such an incredible man by my side. He has truly moved heaven and earth to try and get me the care I need. Please pray for our families who are worried about me but excited to see us after so long, that they will be patient with me and prepared for the condition I am in. Finally, please pray for me as I face a very uncertain path ahead. I promise to keep writing on here and updating everyone. We love you all and we can’t believe that very soon we will be back on U.S. soil. Sending all our love.