Round 3… Or is it 4?

Hey everyone! It’s been a while since we last had a chat. I have to be honest, it’s hard to let you in on my life sometimes. Mostly because I feel like I’m complaining (I promise I’m not trying to) or like I’m simply inadequate. It’s been hard going from fun adventures in Asia to adventures in the doctor’s office.

Anyway, first of all, I hope you all had a Happy Thanksgiving and are on your way to a very Merry Christmas. This last thanksgiving was truly a special one for my family. On Dan’s side, everyone was home! (See above photo.) Ya’ll, this is a BIG deal. We have family spread around the country and we were all in one place for Thanksgiving! It was truly a blessing. For Christmas, we’ll be with my parents -we try to make the holidays even with our families, which can be challenging with them living so far apart. How do you and your families split up holidays? (Seriously, someone tell me)

On a different note, Dan and I have officially been together (dating, engaged and married combined) for 9 years. NINE. Is it really possible?? I guess that’s what happens when you meet the love of your life at 15 years old and start dating at age 16… how truly blessed we are. 🙂 Speaking of blessed, let me fill you in on what’s going on medically and tell you just how blessed I am to be spending my life with Dan. God really has designed us for one another, let me tell you.

I think the last time we talked I was getting ready for my appointment with my Lyme specialist since my Lyme results popped positive for Lyme and Bartonella. Well, I went to the appointment and guess what? Time for PICC line number two. Yes folks, I won a PICC line doctor’s order when I saw him last. (I know how to do this, don’t I?) The good news is, I know what to expect with a PICC line, the bad news is I know what to expect with a PICC line and to make matters worse, our insurance company continues to deny coverage for my treatment. So basically, I have this standing order for a PICC line (which by the way, the waiting process for this is worse than having it in… I hate when they do the procedure to put it in… I want this over with…-okay, ending my whiny rant) but since my insurance company won’t pay for treatment (yet), I can’t get the PICC line.

To give you an idea of why this is so important I have to explain some medical happenings in my body (sorry for those of you who hate medical crap). First, understand that the Lyme and Bartonella in my body has managed to get into my spinal cord and spinal fluid, run up my spine and into my brain. Neurological Lyme disease is what they call it. The Lyme in the brain has created a brain lesion (not sure if I’ve talked about Brineta before) which is growing fairly quickly (over 1/3 bigger in 4-6 month apart MRI’s). The theory is that Brineta is causing most of my fun issues. You remember right? Like how I run into things, almost tip over, oh and my ultimate favorite have something that looks like a seizure, which convulsions but has been labeled “seizure potential of an epileptic nature” (not kidding) just to name a few of the ‘fun’ I’ve had to deal with and Dan has had to watch. Well, if they can get antibiotics into my brain (breaking the blood-brain barrier) that Brineta will shrink and possibly go away. While I live with Brineta, I’d like her to move out permanently. (Yes, I know I’m weird for naming my brain lesion and talking about it like a person but it oddly makes this less scary for me… so bare with my quirks please. 🙂 )

So basically, until I get this PICC line I’m stuck… essentially getting worse. And by essentially.. I guess I mean I am. My memory is worse, my ability to find words or finish sentences is worse (BUT Dan is great at guessing what I’m trying to covey lol), and the scariest of all, my ‘seizures’ are worse. It’s matched my medication and I now convulse-and ya’ll… it can last a LONG time sometimes. The other theory is that every time I convulse or have a ‘seizure’ where my vision goes completely blurry that Brineta grows a little bit. I’ve been having these episodes more than I care to admit.

Now let me tell you, Dan is handling this all like a champion. He’s supportive, and caring and to be honest, a little (or more like a lot) scared. It breaks my heart to see how his face changes (with what little vision I have) when I have an episode, or when I tip over (his reflexes are lightning fast… he’s good at catching me- even if he doesn’t expect it). He’s understanding when I just can’t do something because I’ve worn myself down too much that week. He has never questioned or wondered why this is happening to me (us) instead of someone else. Oh, and did I mention that he’s the one taking on the insurance company now? If that’s not love, I don’t know what is… he’s truly incredible.

Speaking of Dan… he graduates on December 17th. Let me say this again… HE GRADUATES NEXT SUNDAY!!!!!!!!!! To say we’re excited is a gross understatement. While I’ve been sick and he’s been taking care of me, he’s taken the time he had to go and finish his pre-law degree. To say I’m proud doesn’t even fully explain it. I told you he was an incredible man. 😉

Well folks, the only other news to give you is that we’re moving. We did a lot of praying and talking to my parents and feel that it would be best for me to be with mom and dad while Dan prepares and leaves for OCS training. This way, when I finally get my PICC line (Dan isn’t going to take ‘no’ for an answer), I have family there to take care of me…. because PICC lines make life difficult.

So for those of you who have been praying for us… THANK YOU, THANK YOU, THANK YOU! I’m grateful for all of you. To share our lives like this can be a challenge, but I know that it helps ya’ll know how to pray for us. Speaking of which, please be praying for Dan as he finishes his schoolwork- this last week is going to be tough for him. Also, please pray for us as we prepare to move and for my parents who are graciously taking me back in to care for. Also, please pray that our appeal to the insurance company not only gets approved, but that they pay for the entire treatment (not just 28 days). I will need this PICC line for a minimum of 3-4 months (possibly longer) and the cost is simply too much for us to handle ($100/day!).

We love you all bunches and bunches. We thank God for you everyday. God has truly blessed us. He is good all the time and all the time He is good. Although we’re walking a difficult road right now, we know that He is watching out for us and working it all out for our benefit. We’re just glad it’s us on this road and not someone else. 😉 Thank you for sharing this journey with us.

XOXOXO,

De

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

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