Amazing Things Come to Those Who Wait

“You are such a patient and calm person!”. I think that is the line I’ve been told the most in my life. I agree with this statement...when it comes to dealing with other people. I’m the kind of person that would sit in a restaurant for hours waiting for my server to return. If I was ever on that old MTV show “Boiling Point”, I’d win all of the money! I am way too nice and patient in social situations! However, I am quite the opposite when it comes to myself. I feel like I am pretty impatient with myself. I know I’m VERY hard on myself. This is one thing I have always struggled with. Honestly, I think a lot of us struggle with this. Well, something happened to me on July 5, 2015 that gave me no choice but to be patient and a bit easier on myself.

I woke up with my fiance that Sunday morning, with a plan to go for a trail run to train for my next race. Ian offered to go running with me and ride his bike afterwards. I told him to just go ride his bike and then we would both be done with our physical activity for the day. 

Two days before, I had some nasty varicose veins removed from my left leg. They had been bothering me for over a year, and I was so tired of dealing with the pain and throbbing. The doctor encouraged me to be as active as possible after the procedure - so off I went for that trail run, alone.

I was nearing the end of my 3 miles, thankful to be about done. It’s a trail I’ve ran on a million times before. I rounded the corner to go down the hill, and before I knew what was going on I heard a loud crack as I went sailing through the air, and landed on my back side. “Well that didn’t sound good.” I said out loud. I looked around to make sure no one saw my embarrassing trip over that darn root. I swear the thing grew out of nowhere that very second! Perhaps the earth shifted a nano millimeter, which caused the ground to loosen up, and in turn the root popped out that exact moment I was running across it? I sat up calmly. Pulled my legs together, wiggled my toes. “Well - that is a good sign.” I stood up, and walked a few steps. “Okay, I’m good. I can walk. Don’t freak out Amanda.” I continued to walk down the hill, and something definitely didn’t feel right. I decided to keep going, but then had a fear “maybe something really is wrong - probably not wise to risk making it worse”. So I carefully walked my happy butt to a bench, and sat down trying to reach Ian on the phone.

I knew he wouldn’t be done with his bike ride for awhile, so I waited. I was going over in my head “Okay, I know Ian thinks I exaggerate a bit...should I go ahead and try to walk the .5 mile back?” Stood up - “Hmmm.. nope not good”. Sat back down and waited about 45 min until Ian called.

He came and picked me up and said “so... can you drive the Jeep back home?” “Yeah, sure.” Meanwhile he said “I’ll call Scott (his friend that works for St. Vincent Sports Medicine), and we will just have him work on you tomorrow”. I follow Ian back to the house, and get out of the jeep: “Ian, I can’t walk into the house, we need to go to the hospital” “Really?” “Yes...”

Yep, I broke my hip! What devastating news! Here I was, competing in a trail run series (and so proud of how I was doing so far), I had just joined a crossfit gym and was VERY excited about the shape I was getting in and the people I was meeting. I was to be married in 3 months and I had this dream of “being in the best shape of my life” like every bride wants for her wedding. I was told 3 months of no walking or driving. 3 months?! I burst into tears. That sounded like such a long time. So unbearable! 

I cried every day for about a week. All I could do was sit there. Every day was exactly the same. Everyone around me was going on about their normal lives. My fiance would travel for work, and I’d sit there. I’d scroll through my social media and look at all of the fun things everyone was doing outside in the fantastic weather. I think I let myself have a pity party for about a week and a half, but then I told myself “No, you are going to make the best of this! Something good will come of this!” And so the patience began. I waited for my first follow up appointment a month after surgery, and was given the okay to do a little upper body work. So, I forced myself to try and do a chin up every time I crutched to the bathroom. Before I knew it, I was doing chin ups AND pull ups - two things I’d never been strong enough to do before. I wrote myself an upper body workout, which I named “12 Days to the Gun Show” :) (A 12 exercise ladder format) and I did it 3 times a week. I listened to my body, and if anything hurt, I didn’t do it. 

The best part of all of this is, for the first time in over a year, I started experiencing level 0 symptom days with my MdDS. I had pretty much come to the point of acceptance (okay, I’m never going into remission - it’s been over a year - I am just going to have to live this way). I think breaking my hip was the best thing that could have happened to me! I was forced to relax. My biggest worry was how I was going to carry my food from the refrigerator to the table to eat. Once I got my mental state back on the positive side, and decided to be patient with myself, everything else fell into place. 

I’m married now, to my best friend and the most amazing and supportive man in the world. I listened to the doctors, and didn’t do anything I shouldn’t do, and guess what: I didn’t have to walk down the aisle on crutches! I healed 2 weeks ahead of schedule! 

I’ve made new friends through this experience. People I had only known a very short time reached out to me to let me know they were thinking about me. Wonderful people went out of their way to come visit me, bring me magazines and coffee, take me on little adventures to get me out of the house (including a mad dash for fresh peaches!). My trail running buddies even printed out my face and put it on a stick to pose with me at the races I couldn’t attend (which made my heart so big and I cried because they were so thoughtful!). Medical professionals and physical therapists worked hard to make sure I had the tools to be able to walk and dance at my wedding. Thank you EVERYONE for your love and support!

I have two main messages behind this post: 1) If you have MdDS and you’ve passed your 1 year anniversary, don’t give up hope! Relax, stay positive, and continue on with your life. I still have little flare ups, but most days are great. I’m not in complete remission, but I sure think I’m close! 2) Don’t ever give up on yourself no matter what you are going through. Cut yourself some slack. Things will happen in your life that will push you back a little. Don’t let that be an excuse, just take a detour to get to where you want to be :). Just the same with road detours, you have to have some patience with that life detour. My legs might be weak - but I can walk, and my back is strong enough to carry the weight of my little world!

June - MdDS Awareness Month

Dear June,

11 months. Wow. I thought for sure I would have found remission again way before this, but reality is starting to sink in that I could very well have to deal with Mal de Debarquement for a long time. Maybe the rest of my life.  Am I depressed over this? Nope. At least, not at the moment. Let me tell you why.

Since stepping off that flight from China to Chicago, and having that weird rocking sensation, brain fog, blurry vision, I’ve experienced a whirlwind of emotions. I was scared, I was anxious, I was panicked. After a month of numerous doctor visits,  I got my official diagnosis and I became thankful, and hopeful. I went into remission after 2 months and I was joyful, looked at the little stresses in life a different way, and excited about my future. When I had a relapse I tried to remain positive, I took initiative to find answers, I was patient, but then my patience started to fade away as the time kept passing with no remission. I started to become worried and anxious again. I wondered if I was strong enough to deal with this day in and day out. I broke down in tears often. I felt alone, because I knew no one truly understood what I was feeling inside. I feared my boyfriend wouldn’t want to “deal with this” the rest of his life. I started to shut myself in a little, but I never gave up searching for answers. I went back to Dr. Hain in Chicago. I tried his medicines. Nothing seemed to work. I was clinging on to his words that it’s rare for this to last forever.  As days, weeks, months passed, I started to lose hope. Then, I knew I had to make a decision. I can either live with MdDS, or I can let MdDS live for me.

I’m choosing to LIVE WITH MdDS. This does not mean I have accepted that I’m stuck this way. It certainly doesn’t mean I have stopped looking for answers. This means I’m not letting it get in my way from doing anything.  Anything. I desperately want to feel normal again. I want the world to stop rocking. I want to be able to walk through dimly lit rooms without feeling like I need to hang on to a wall. I want to take an elevator and not feel like I’m stepping off onto a dock on treacherous ocean waters. I want to not feel tired all the time. I want to not worry if I’ll get worse in the future. However, MdDS has changed me in so many positive ways. I don’t take things for granted anymore. I push myself to do things that are hard, just to prove to myself that I CAN! You know what, I’m getting pretty good at hiding the fact that I feel like crap most of the time. However, you know what… I’m not really hiding it. I’m just choosing to live with it. To live in spite of it.

I think most people would never know I have MdDS. They don’t understand that I choose to be active and positive, because it can bring nothing but good things to my life, and may even help me shake this nasty disorder!  I currently compete in a trail running series, and I’m constantly proving to myself that I can still do it, and I can do it well!  I have consistently finished in the top 5 for women in each race! Sure, my symptoms shoot up after I finish running, and yes my vision is blurry while I’m running, but the feeling of accomplishment afterwards is so worth it. Proving to myself that I can live with this is my main goal, and it is what pushes me to work harder. I’ve joined a CrossFit gym to prove to myself that my body can do amazing things. Thanks to MdDS, I’m in the best shape of my life. My confidence has sky rocketed. I have more self-esteem than I’ve ever had. It really all goes hand in hand. When you have an illness, you do good things for your body to try to beat that illness, which in turn raises your self-esteem and confidence. You can’t go wrong with a positive and motivated attitude!

June is MdDS awareness month. I felt compelled to write this because I know so many people are out there struggling with something. Not only do I want to raise awareness to find a cure, but I want to raise spirits of those who are suffering. Please, never give up hope. Don’t let MdDS live for you. You are so much stronger than you think. Go prove it to yourself!

Oh, and to leave you with an even happier ending: My amazing boyfriend that I had nightmares about breaking up with me because he didn’t want to deal with a “sick girlfriend”…is now my fiancé. Not only has MdDS made me a stronger person (mentally and physically), I truly believe it has built an even stronger foundation for what will become a beautiful lifelong marriage and an amazing life. Everything truly does work out in the end. Enjoy the ride :).

A Letter to my Fellow MdDS Warriors

I had my appointment with Dr. Hain (a specialist in Chicago) on Friday morning, and I’d say it went pretty well. He is a very intelligent man and really seems to know his stuff. This post is to inform those who are fighting the same battle that I am of what I learned, and what I experienced. I asked a lot of questions, and Dr. Hain was happy to answer them. Many of his answers were a bit over my head, but that is because he was trying to explain to me how he came to those answers rather than just answering my questions. This is comforting because I know there is research behind what he says. He does believe that MdDS is migraine related. I told him I didn’t have a history of migraines, but I have had frequent headaches my whole life. He went on to explain that headaches are a form of a migraine and there are so many conditions under the migraine umbrella that overlap. It was a very detailed explanation, which I wish I could re-iterate here. He brought up Dr. Dai’s research before I could inquire about it. He told me about the time he met Dr. Dai at a conference. Dr. Dai informed him that he had found a treatment that works for MdDs. Dr. Hain was very excited to hear about his possible treatment, and had high hopes. However, when the research paper came out, he had concerns and was “dubious” about Dr. Dai’s theories. Dr. Hain also emailed Dr. Cha (one of the top MdDS researchers) about the paper, and she shared his concerns. It didn’t make sense to him how the cross oscillation would not resolve itself upon non motion (I wish I could remember his exact words, but I believe he talks about his concerns on his website). None the less, he was hopeful that Dr. Dai was on to something, and has sent 4 patients to NYC. However, he is 0 for 4.

He said he has 3 medications he typically uses to treat MdDS. He said he has seen success with Klonipin, but really doesn’t like to prescribe it because it is so addictive and has awful side effects. The second is Amitriptyline. The last, is Venlafaxine which he prefers over the other two due to the fact that is has very few side effects. I was prescribed Nortriptyline by my neurologist back home, and Dr. Hain wanted me to switch to Venlafaxine because of the side effects of Nortriptyline. I had only been taking Nortriptyline for a week and 2 days, so now I have switched to Venlafaxine.

He said while he is very pro physical therapy, he has not had any success with that. He encouraged me to keep exercising and said it wouldn’t harm anything. He also said since this is a relapse, it’s safe to assume it might take twice as long as the first relapse to get over it.

From what I gathered, he said nearly all of the patients he has seen are women who are either post/pre-menopausal, or have traveled while on their period or near that time. (I actually traveled a few days after my period and started taking my BC the day before I left for China).  He said women are more prone to headaches/migraines, especially during this hormone change which helps support the migraine/mdds connection. He did not share my concern that I am 3 months in. I think he is pretty confident in the medicine and pretty confident in my returning to remission. He also told me I don’t have to take the medicine after I start feeling better. So it’s nice to know the medicine is not a permanent thing.

I do think the key, for me, is to take a step away from social media and the internet and focus on hobbies that make me feel good and smile. I need to eliminate as much stress and anxiety as I can over this. When you have something that is rare and no one seems to be giving you answers, it is so easy to become consumed with figuring it out on your own. Hours have been spent reading articles wanting an “ah hah!” moment.  I find myself constantly looking to the support groups for answers, but also stressing for everyone else and letting my anxiety rise. I know it is selfish of me, but I need to give myself a break. The support group is amazing, and I’m so thankful for the people who have helped me so far. I just simply can’t figure out a way to keep my empathy from turning into fear and anxiety.  

Already this morning (3 days into Venlaflaxine and some weight lifted off my shoulders by Dr. Hain) I am feeling better than I’ve felt in the past 3 months. My symptoms were extremely low until the parking garage, and then a hateful phone call at work.  Stress.  I have to find a way to break free from it!

Once I get better (because I know I will), I plan to come back and try to help others. I know how scary, lonely, and devastating this disorder/syndrome is, but we really need to fight it with hope, positivity, and strength. I’m choosing the childish approach of “if I cover my eyes, I can’t see you…so you can’t really be there.” I’m ignoring the beast and willing it away.

Ignore the naysayers, the insensitive comments, the disbelievers. It’s not easy having an “invisible disorder”, but know that those who know you best and who love you are going to be that pillar of support. My thoughts are with you all and I pray you find ways to cope and improve every day and find remission!

10 Things I do to Cope with MdDS

I get it. When it comes to life, sometimes you have no choice. You don't have a say. It seems unfair. You can't change everything. However, you can change some things. Those are the things you have to focus on. A great person once told me "our bodies have an incredible way of adjusting and coping". I truly believe in this. No matter what you are going through, I challenge you to see the brighter side, and to make a list of what you can change to help you cope.

10 Things I do to Cope with MdDS:

Get mega amounts of sleep. I’m talking the amount of sleep your great grandparents need. Yes, that much! If I could go to bed at 6pm, I would!

Exercise. A lot. Exercising always relieves my symptoms during the session, and usually lowers them for a while after I am done. You would think I’d be mega ripped by now, but unfortunately I love to cook, and love to eat even more :).

Look down at my feet. See me walking down the sidewalk? I probably won't see you! When I walk (most of the time) I need to look down. No, I’m not being anti-social or rude. I just need all the focus I have to make sure the floor is truly beneath me, and to help me walk in a mostly straight path.

Avoid dimly lit rooms. My symptoms really increase in the dark. If this can’t be avoided, I walk slowly and carefully (usually with arms out). Even better, I grab on to Ian’s arm for a sense of security!

When alone, get in and out of stores fast. Oh how I love to meander around grocery stores, but unfortunately my surroundings really affect my symptoms. If I don’t have anyone with me, I try to get out of there as soon as possible.

No thin stripes. I’m sorry, but if you are wearing a pinstriped shirt, I can’t look at you! :) So I guess if you want me to avoid you, wear stripes!

Breathe. Remembering to take deep breaths helps me focus and calm down.

Keep busy. Cooking, crafts, reading, spending time with people. If I can find something to occupy my mind, it really helps me not focus on the room rocking around me.

Breakdown. I admit this isn’t easy. I have days where I just breakdown and cry, but then I turn to a family member, a friend, or my boyfriend. I let myself be vulnerable, and let them bring me back to stronger ground. I’ve found it’s okay to breakdown. It actually helps to cry out my frustration with this. I just have to choose who I can trust to help build me back up.

Stay positive. Surely I can’t be stuck this way forever. I’m over 2 months into this relapse, but I did get better once. I will get better again. I will.

Depression is the War, Positivity is my Sword

I have to make a confession: this relapse of MdDS has hit me harder mentally than I expected it would. When I went into remission after my first bout, I told myself “Okay Amanda, if this happens again…you have proof that you can get better. You can handle this.” Well here I am again, trying my hardest to handle it. The other day I was looking over the symptoms of MdDS for the 100th time. Don’t ask me why I keep looking, but I do. They are listed as:

Persistent sensation of motion such as:

Rocking

Bobbing

Swaying

Tumbling

Imbalance

Ataxia – a staggering gait

Fatigue

Difficulty concentrating

Disequilibrium

Symptoms less frequently reported:

Sensitivity to light (i.e., fluorescent, strobe, flashing)

Dizziness

Headaches

Migraine headaches

Intolerance of busy patterns

Loss of self-confidence

Nausea

Confusion

Memory loss

Ear pain and/or fullness

Anxiety

Depression

I am experiencing many of these symptoms, but the ones that stick out and bother me most are “loss of self-confidence” and “depression”.  I think these two “symptoms” go hand in hand with any sort of illness a person might experience.  It isn’t easy appearing to look fine from the outside to others, and feeling absolutely lousy on the inside.  You want to be able to talk to someone about how you are feeling, but you feel frustrated because not many could possibly understand. You can’t expect them to understand, but you want so badly for someone to understand. I am Amanda, but I don’t feel like Amanda. I feel like a diluted version of myself. I feel like I’m not “all there”.  I admit, sometimes I just want to break down and cry, but then I feel guilty for wanting to break down because I know so many others out there are dealing with far worse illnesses than me. I think it is very easy to allow all of these feelings to develop into depression.

It's tough to remain strong all the time, however I really see no other option but to deal with this whole thing with positivity. What good will it do to shut myself in a room and cry? What good does it do to complain? Who wants to be seen as a whiner when you know that everyone has their own battles they are fighting? I’ve worked so hard to reach the level I am at in my career, in my weight loss and strength training transformation, my friendships, and my relationship. How could I let this disorder rule my life and wreck all I have worked so hard for? I have no choice but to keep moving forward, but I admit it’s not easy. I went for a trail run on Saturday, longing to just feel normal again. I ended up going 6 miles on accident (I got lost a few times, which I would love to blame my condition for that…but chances are it would happen dizzy or not). During the start of my run, I was feeling pretty good, but once I hit mile 3 I felt like a woman who had drank 4 glasses of wine stumbling through the woods. I took some deep breathes, and I kept my act together. I knew I didn’t look like a drunk person, but in my head everything was bobbing and swaying. I wanted to stop running so badly, but I went those last 3 miles. I was proud of myself.

This is what I have to keep doing. Keep running those miles in life. Keep fighting that tinge of depression that is trying to break through my strong will. I have to keep in mind that even though others around me might think I’m crazy, it doesn’t matter. I’m living this, I’m owning it, and I have to do what it takes to get better. That is why I am writing this blog. Letting this out in my own way is part of the glue that is filling the cracks that depression keeps trying to sink through. I have a feeling others are fighting that same war as me in their own way. Isn’t that what life is about? Keep finding things that make you a happy, confident, positive, loving person for yourself and those around you? No one likes a mope right? :)

Remission, Relapse, Re-evaluate

I did exactly what I thought I would do. I started a blog to document my journey and hopefully help others, and then I put it aside and never came back. I have a tendency to strike up a passion for something, and then lose interest. It’s a habit I’ve tried hard to break, but I have to face it…it’s just a part of who I am.

My last post was December 17th, and I was still living in dizzy world (not to be confused with Disney World). I continued to stumble around this world for a few more weeks after that post, and Christmas day was definitely the worst I had felt since the beginning. I think it was the stress of sleeping at my parents’ house, not sleeping well, and just the busyness and excitement of the holiday. The day after Christmas, I decided to take a trip with my boyfriend to his parent’s house in PA. We opted to drive, and I figured I couldn’t get any worse. Who knows, maybe the long drive would reset me and throw me back on stable ground? My dad had a theory that I’d be fixed after driving through the tunnels in PA. My dad is a little strange (I write this with a huge smile).

When we first arrived in PA I felt pretty awful. However, the next day I woke up symptom free! This tricky disorder wasn’t fooling me though. This had happened before, and as the day went on my symptoms would re-appear. However, I always kept hope that it would be a free day. On good days, I would dread taking a shower, because I saw it as the trap door into the dimension of dizzy world. Ian’s parents’ shower was very big and open, with clear glass doors. I stepped into the gorgeous shower, fearful I would leave clean and unbalanced…but I didn’t!  I spent the rest of my days in PA symptom free!  I was also able to do a lot of relaxing, and just spend some good quality time with Ian and his parents. I think all of this contributed to my remission of mdds, and perhaps my dad was right about the tunnels after all. :)

Goodness, I was so thankful that it was gone! I took hundreds of showers (not all in one day mind you), and I was free! I went to the grocery store and the mall…and no dizzy demons appeared! I pranced around...

I sang and danced! Finally! Freedom! Life went back to “normal”. I found myself stressing over the little things as I had before. Loving everything about my life, but still finding things to be stressed out or annoyed over. Slowly my thankfulness for the little things I had during my mdds was fading away. I was forgetting how truly lucky I was to overcome the disorder.

Now, I have been handed a reminder. Yes ladies and gentleman. It’s back. I am not able to pinpoint what caused my relapse, but in the past two weeks I have done the following: flown to NJ, swam in the ocean for the first time, flown back to Indiana, been a passenger in a car to Chicago and back, and been extremely exhausted and stressed. My symptoms appeared Friday, July 25th after I returned from some quality time spent with my brother at a concert in Chicago. I’ve been wondering over and over, which event triggered this? The flight? The swim? The drive? The Stress? The Fatigue? In reality, it doesn’t really matter. It’s back, and now I fight the battle again.

Everything happens for a reason. I truly believe I just needed to be reminded: “Don’t sweat the petty things, and don’t pet the sweaty things”.  J I’m feeling more confident about this relapse since I know what I am dealing with, and I beat it before. I can do it again. I can just use this time to re-evalute things in my life and remember what is important, and be thankful for every day that I have and all of the people that surround me. I’m still me, I’m still healthy, I might just walk a little funny :).

Hi. I found your blog via the 'Mal de Debarquement' tag. I haven't been officially diagnosed yet but last year my neurologist said my symptoms fit it better than other vertigo-type conditions. I've had the rocking/swaying, occasional tumbling & rare spinning sensations since Oct '08. There was no definite travel-related experience that sparked it off; I'm just one of those spontaneous folk. ;) I'm currently looking into vestibular therapy options before I see my neurologist again next month.

Hi there! Let me now how the vestibular therapy goes. Have you tried any medicines? I really think exercising helps because you have to re-train your brain to balance. I'm in the process of writing an update to my blog. I've been symptom free since Dec. 27th and I have a few theories to share. Keep with the positive attitude. Our bodies truly have a miraculous way of coping and overcoming adversity if we stay positive!!

Moon Shoes, Dee Snider, and MdDS

Well, I’ve got my Moon Shoes on today.

I always wanted a pair of those when I was younger. My best friend growing up had some. She graciously let me try them on once. What fun! I wish my current feeling was as enjoyable. I was doing well yesterday morning, and even made it through the shower (which seems to be one of my triggers), then suddenly I started rocking (and not like Dee Snider) when I got up to go to the bathroom at work. I’ve been trying to keep a record in a spreadsheet of which days I am on a boat, and which days I’ve hit land. So far, my triggers seem to be very random. However, I have noticed certain things that have caused a relapse more than once: taking a shower, being in a store, dimly lit rooms where I am trying to focus on something, putting on my glasses, wearing a hat (weird right?). On certain days, these don’t bother me. Saturday I was completely symptom free again. I even attended a Christmas party, which I was sure would trigger my symptoms, but it didn’t.  On Sunday, I made it to the grocery store and back without a single bounce, then randomly I was thrown off into the sea while cooking dinner (while wearing a hat) with my boyfriend.

It’s been twelve days since I received my Mal de Debarquement (MdDS) diagnosis and 44 days since the day it began. The Neurologist said there is a “theory” that MdDS is related to migraines. He then prescribed an anti-depressant that is used to treat people with migraines, and told me if the symptoms didn’t decrease that they would try vestibular physical therapy. I have made the decision to hold off on taking the medication. Here are my reasons why: Anti-depressants scare me; from what I can tell, there is no proof that they work for MdDS; and my symptoms seems to be coming and going. I’ve had 3 days so far of complete relief, which I am very thankful for! If someone reading this has MdDS, I am curious to know if anti-depressants have relieved your symptoms. Feel free to send me a message or leave a comment!

Over the past year and a half, I’ve become very interested in exercising and strength training. Not only have I gained a huge boost in self esteem from the 20+ pounds I’ve lost, but I also found something that was fun and challenging. How was MdDS going to affect my new passion? In the beginning I was quite concerned with this. How was I going to do squats in the squat rack without falling forward? How was I going to run on the trails when I feel like I can’t even walk in a straight line? Well, a couple of weeks ago I decided to go for it and hit the gym. Guess what happened…I felt great! At first I felt a little wobbly, but soon I felt no dizziness at all. I even felt great after my workout. Seems like I might be on to something here, right? Sure, I was disappointed when the symptoms returned the next day, but “Rome wasn’t built in a day”. I had a really bad dizzy day on December 9th. I was to the point where I felt like I was going to puke because the rocking was so bad. Instead of spending the evening on the couch, I forced myself to go to the gym and ran 5k on the treadmill. I admit, getting off the treadmill was a bit rough, but while I was running I felt like myself again. The following day was a no symptom day. Hmm, is there a correlation here?

I admit, it’s easy to feel down on my bad days. I don’t expect people to understand what I am going through. I know to look at me, I look fine. I look like I am feeling fine. I try my hardest to act like I’m feeling fine, but I don’t. I do find it comical when people say “Well you don’t look dizzy!” It makes me want to show up with crazy hair or a miss-matched outfit. That could be fun! “Hey Amanda, your purple striped shirt does NOT match those pink polka dot leggings.”  “It’s okay...I’m just dizzy today”.

I’m so lucky to be surrounded by understanding, compassionate, and positive people. They lift me up and give me the motivation to keep searching for answers to all of this…and some of them just plain make me laugh. Laughter, like a positive attitude, is the best medicine!

What?! A diagnosis?!

I've been thinking about this a lot lately. I've always wanted to have a blog, but I'm not very confident in my writing. Last year I started a blog and I was so excited, because I wanted to share my new healthy way of life in hopes it would inspire others who are struggling. I think I made two posts, and quit. I'm not sure that anyone would be interested in what I have to say. Who wants to read my recipes? My random thoughts? See my silly cat pictures? Hear about my workouts? A good blog has a purpose. A focus. A goal. It's informative. It can be helpful to others. It can inspire. I feel like now I have a focus. I have a goal. I have some information to share. I hope it can help others that are going through what I am going through. I hope it can inspire those who are struggling with what I am struggling with. Maybe I can provide some answers? Perhaps I can provide some comfort? Hopefully I can gain knowledge and comfort for myself. It helps to know you aren’t alone in this world.

On October 23, 2013, I was blessed with the opportunity to travel to China for a business trip. My purpose was to take as many photos as possible to help promote a study abroad program that is provided for our students. Being a graphic designer and web designer, I never dreamed of the opportunity to travel, let alone to China.  I’d never been anywhere before. I’m the typical mid-western girl who hasn’t even seen the ocean (okay, maybe not so typical?). Instead of taking baby steps into traveling, I jumped in head first and visited 3 cities in a span of 9 days. It was an unbelievable experience, a life changing and thought provoking experience. I will never forget the people I met, the culture I experienced, the food I ate, the history I saw. I returned back to the US on November 3rd, and little did I know that my life was about to be different.

When I returned to my apartment on November 3rd, I began to feel an odd sensation. I felt like someone was sitting on my shoulders and trying to push me through the floor. I felt as if I couldn’t keep my head up straight. There was so much pressure behind me. I also felt this constant rocking and bobbing sensation, almost as if I was on a ship. I remember talking to my boyfriend, Ian, on the phone and just saying “Ian, I feel weird. I can’t explain it…but something isn’t right”. I had been up for 30 hours straight with all of the traveling. I figured my body was just exhausted and maybe it was jet lag. I went to bed, and woke up in the middle of the night feeling like someone was trying to push me off my bed. What in the world was going on?

The next day, I woke up and I felt the same. The bobbing, the rocking, the feeling that someone was standing behind me and trying to push me across the room. If I bent over, I felt like I would just continue to tip and do a somersault. I was a little nervous, but I was sure the feeling would go away soon. I went to work the following day, still feeling these symptoms, and by the end of the week I had gone to two different doctors. One said there was fluid behind my ears, and prescribed Meclizine for the dizziness. This made me feel worse, so I went to urgent care and was put on Prednisone. They thought perhaps I had an inflammation somewhere due to the long flight.

The prednisone didn’t relieve the symptoms at all. After day 8 of feeling this way, I went to an ENT. He said I had no fluid behind my ears. He gave me a hearing test and blood tests, they came back fine. He thought maybe I was just tired and it was something viral. He told me to come back in a week if I wasn’t better. In the mean time, I was trying anything to get some relief. It was affecting my job performance and I knew I had to figure this out quick. It wasn’t easy sitting in front of a computer all day feeling as if someone was going to shoot me across the room in my chair on wheels if I didn’t have my feet planted firmly. It also wasn’t fun looking at a computer screen while you feel like you are bobbing up and down. I was also experiencing some extreme brain fog, which has sense dissipated, thankfully. I felt like a zombie on roller skates on a waterbed. That pretty much sums it up!

After talking to a few people, I decided to try a chiropractor. Maybe I had a pinched nerve from the flight? After talking to the chiropractor, I felt a glimmer of hope. He seemed positive he could fix me. I went for 3 adjustments, and still no relief. I went back to the ENT and told him I wasn’t better. He was concerned, said it didn’t sound like typical dizziness or vertigo, and that there wasn’t anything more he could do because my ears were perfect. He told me I needed to go to a neurologist and have a CAT scan.

A CAT scan?! Yikes! Something possibly wrong with my brain? Immediately, I feared the worst…brain tumor. It had been in the back of my mind all along, but I refused to let myself look up symptoms for a brain tumor. You know how our minds work. We can convince ourselves we have anything! I broke down crying to my mom after the appointment. Hearing that I had to have my brain checked out was very scary. My mom assured me it wasn’t a brain tumor. Which, I knew there was no way she could be sure…but it was just so nice to hear someone say that. Sometimes you just have to rely on those who are close to you as a source of strength. I’m so thankful my mom was there to be that pillar of strength, and my voice of reason.

That evening, I started to feel very ill. I was burning up, but had the chills. My stomach was in knots. I crawled to the toilet, because every time I stood up, my vision would turn black and I would almost pass out. I called Ian, who was in Florida for work, in a panic. I’d never gone to the ER before and I wasn’t sure if I needed to go or not. Being alone and about to pass out every time I moved, told me it wasn’t safe to stay at home by myself. If all of this was connected to my trip to China, and it was some weird virus, I needed to get help. He kept me on the phone until my parents arrived to take me to the ER. I was filled with fluids, asked millions of questions, plenty of more blood work was done, and finally a CAT scan was performed. It was 3AM, and I lied in the hospital bed, watching the seconds tick by on the clock. I prayed and anxiously awaited the results from the scan. An hour went by, and finally the door opened. “Amanda, your brain scans came back normal. No big bad goombas in your head.” (Yes, that is a direct quote from the wonderful ER doctor.) What a relief!!!!!! I still had no answers, but I was so relieved that it wasn’t a tumor or anything serious like that. Phew.

So, now what? The prednisone didn’t help me. The ENT couldn’t help me. The chiropractor couldn’t help me. My brain scans showed nothing serious going on. I had an awful appointment with a neurologist and got no answers from him (which is a comical story I may have to tell later). Who do I turn to next?

18 days of walking around like I was on a trampoline or water bed. 18 days of being in the shower and feeling like I was in a row boat in the Atlantic Ocean. 18 days of wondering what in the world was wrong with me, and trying to stay calm. I knew what it wasn’t, but still didn’t know what it was. One thing I did know was that I had so much support around me. Ian promised we would find someone to fix me, and that he was there for me every step of the way. My parents and brother were there for me. My friends tried to keep me calm. The people at work were so supportive. I felt so blessed to have such a great support system. All of this kept my mind in a positive place. I was confident this thing would get solved and I would be okay no matter what!

I was scheduled to undergo a bunch of balance tests, just in case it had something to do with my inner ear. Surely, it was just something with my inner ear. I was put in a chair with black goggles on, spun around saying words that start with the letter d, e, and f (do you know how hard it is to think while being spun around? Hah!). I had to follow a smiley face on a wall with my eyes. I had cold and hot air blown into my ear drum to trick my brain into thinking I was moving. Finally, time for the results. “Amanda, your inner ear reacted perfectly. This isn’t a problem with your inner ear.” My hopes went crashing to the floor. Of course my inner ear is fine. Everything else has come back normal, why wouldn’t this? The Audiologist told me what she thought it might be. I had actually done some research on the three words she spoke. I had even brought these words up to the ENT, asking if it could be this. “No. It is definitely NOT that.” As he laughed. I didn’t bring those words up to a single doctor afterwards. Now I was hearing them for the first time from a professional. I asked the Audiologist, where do I go from here? Who can diagnose me if that is really what it is? She recommended a different Neurologist. So, off I went. Finally, on December 5th, 31 days of being dizzy, someone figured it out. It was confirmed. Mal de Debarquement (MdDS). Sounds fancy right? It’s a rare disorder that occurs after a long plane, cruise, train, or car ride. For some reason, your brain is stuck thinking you are constantly in motion. Your brain isn’t matching up with what your inner ear is telling it, and what your eyes are telling it. Not many doctors know about it, and not much research is being done. No one is sure what causes it, and there are no treatments. The symptoms usually resolve themselves, but relapses are likely. It can take at least six months for my brain to figure it out…maybe even years. I’ve even read that there are a few cases where it never goes away.

Mal de Debarquement. Hmm. Okay, I can deal with this. I feel so lucky that it isn’t something life threatening. It’s not a brain tumor. It’s not MS. It’s not cancer. I’ve been blessed with great health my whole life. This is the card I’ve been dealt. Now I learn how to manage it, just like everyone else has to learn how to deal with their cards. Now I learn how to NOT let it rule my life, and I write about my experiences in hopes to educate and help others. Cures for this disorder will never be found if people don’t know about it or understand it. What relieves my symptoms? What makes them worse? How can I adapt to this rocking sensation? Our mind is a beautiful and powerful tool. We just have to learn to use it as such.

37 days now. I’ve had one day of full relief from the symptoms, but then a relapse. Since then, I have had the symptoms every day, however not all day long. This is a sign to me that my brain has the power to rebalance itself, but it’s struggling. From the reading I have done on others diagnosed with MdDS, I feel lucky because my symptoms don’t seem to be as extreme as some. I also feel a little guilty. Why are others suffering worse than me? What can I learn about MdDS? What can I do to help? There are answers out there. We just have to find them.

And in case you are wondering: I don't regret my trip one bit. Not at all. Everything happens for a reason, and if it didn't happen now, it would have happened later. I will continue to travel, you can count on that :).

Happy Monday!

Keep your face always toward the sunshine - and shadows will fall behind you. ― Walt Whitman