A little update

There’s not a lot new to report, I just wanted to give a little update. I’m getting all my medical records sent to a new neurologist. I hope he’s the right one for me. :) He came highly recommended and when I asked my friend Cheryl (the one who referred me to Dr. M.) if she knew him she said that he was a great choice. Hopefully (fingers crossed, prayers going up), everything will fall into place. However, I know that if he’s not the right one that the Lord will lead me to the one I need to see. I’m trying not to worry about it.

My walking has been the same – not the best, but definitely not the worst. I almost fell backwards yesterday as I lost my balance (while vacuuming), but thankfully, I was able to catch myself. If I had fallen, at least it would have been on carpet! I’ve lost my balance several times over the past week, but thankfully have always been able to catch myself. This used to not be the case. I used to fall every single time I lost my balance. So I guess that means the exercise I do and the medication I take is working!!! My dad caught me once too as he was holding on to me as we walked into the movie theater and I tripped. While taking showers this week, I’m back to holding onto the walls, as closing my eyes makes me lose my balance. I found myself this morning wistfully looking at some women who were crossing the street holding umbrellas. I don’t use umbrellas anymore because I can’t hold them and onto the walker at the same time. I miss holding an umbrella – how silly is that?! Rain coats are nice, but umbrellas – well, you just don’t know what you’ll miss until you don’t have it/can’t use it anymore! But enough of my complaining (because, after all, it does no good in the first place, except to get me in a bad mood.).
I’ll end on this: I had an excellent weekend.
I saw a movie with my parents on Friday night.
On Saturday I got my hair chopped off by a great friend, who did a fabulous job. This picture doesn't do it justice!)

Also on Saturday, I got to have fun (and get paid at the same time) by doing more patient acting at UT hospital. This time I was supposed to be a 19 year old unrestrained male driver who hit a tree and was trapped in his car for 40 minutes. The doctor I worked with was awesome and I had a blast as usual.

On Sunday, I got up early, exercised and then went to church. I got to go on a Dad/Daughter date out to lunch after church, where Dad and I just talked and caught up and enjoyed each other’s company. It was a great weekend and I’m very, very thankful for it. Even when life isn’t everything you want it to be, it’s still precious and should be lived to the fullest. May God’s blessings be upon all of you this week.

In like a lion

The month of March is usually described as “in like a lion, out like a lamb” and that can definitely be said of how my month has begun.

Walking was going so well (with the walker of course) and then just like that…I started tripping and losing my balance again. I’m off kilter. Walking takes thinking about it again. But there is a season for everything and this too shall pass.

I was blessed beyond measure to spend the winter months walking just fine and that rarely ever happens. I’m a little confused as to why March has started out so rough, but I guess I’m due for some “bad” days. I put “bad” in quotes, because everything is relative :) My “bad” days are no where close to other's bad days. I’m not dealing with a terminal illness. I don’t want people to read this blog and think that I live in a bubble where I only see my difficulties and no one else’s. Although I do have a tendency to do this every once in awhile (I can't lie!), I do know other people struggle way worse than me. I know that I am blessed and I know that my “bad” days aren’t all that bad in the scheme of things.

Ironically, I’m now sporting huge bruises on my left leg, but NOT from falling. I used my legs as leverage to hold up/move a heavy tube TV and now I have evidence that I did it all by myself! I probably shouldn’t have done it by myself, but I’m kind of stubborn like that and the TV was broken anyway, so I knew I couldn’t damage it any worse. I didn't even know I had bruised myself until the next day when I wondered if I had fallen and just forgotten about it! Then I remembered moving the TV.

My brother Stanton and his wife Aubrey came in for a quick visit this past weekend. As Stanton (who’s about to start his 3rd year residency in emergency medicine) was helping me out to my car, he noted that I had been walking much better. I told him it was an illusion, because we had been at my parent’s house and (because of the carpet they have) I can walk without any assistance. As if to prove my point, (although I promise I didn’t do it on purpose!), I tripped right after he said this and he had to catch me.

I'm hoping that since March has come in like a lion, it’ll leave like a lamb and I’ll have balance and good walking again by Easter!

And so it goes…

I am so, so sad right now.
I had absolutely no idea ten years ago when I first started having noticeable symptoms of dystonia, exactly how vital the right doctor was in treating any disease. I soon realized that one neurologist is not like another and that the “right” fit of neurologist to patient takes time to find. In my case it took me five years. And yesterday, I was completely devastated. I got a letter in the mail saying that my neurologist, with his wife and family, is moving out of state to be closer to extended family. I actually cried. Don’t laugh. And still today, I feel so, so sad. I knew what I had was special. Not everyone finds the perfect fit with a doctor or healthcare professional, but after years of struggling, I finally did and now I don’t have that anymore.
I know there are so many other things to be sad about in the world right now, which is why I even debated about blogging on this. I don’t want it to seem like this is the biggest problem – for I know it isn’t. Life goes on, people move on and so will I, but for right now I’m just sad.
If anyone has any recommendations for a new neurologist in the East Tennessee area, please share. That’s how I found Dr. M. My friend, Cheryl spoke up and said she knew the best neurologist around and she did.
And so it goes…my search for a new neurologist begins. As my mom said, maybe I’ll find someone even better than Dr. M. I don’t know if I will or not, but I do know that everything happens for a reason. God is good. He sent me Dr. M. and He will send me the next neurologist. God is in the details. I will trust Him.

Second Nature

Last night it struck me - walking with a walker has become second nature for me. I don't even think about it any more. This is an amazing development for me. I still remember how I felt when it sunk in that I would have to use a walker (or some form of help) for the rest of my life. I was devastated. How would life go on?

But now, walking with a walker is second nature. I instantly reach for it when I stand up. When I wake up in the morning and get out of bed, I instinctively reach for the walker. When I get up from my desk at work, I instinctively reach for the walker. I automatically throw it in the car, without a second thought. The fact that I don't even think about it any more comes as joy. Strange, I know, but joy nonetheless. I never in a million years ever thought that I would get used to it. So, it's with joy, that I say that it's second nature for me now.

I am extremely thankful that the Lord has allowed me to adjust to life with a walker. I think once I stopped fighting Him on it, it became easier to accept! Funny how that works. I am mindfully trying to accept what the Lord has allowed and am trying to use it for Him. Thank you to all of you who have encouraged me and loved me despite the walker. You really have no clue (even though I've tried to explain) how much having to use the walker really made me afraid to face the world. But, God was and is with me the entire time and He and I have navigated life with a walker to the point where it's just what it is: a device to help me get around. I still have moments of fear and doubt and embarrassment, but it's nowhere near how I imagined it would be. When I first started using the walker, I was afraid to face the world, but now God has brought me to a place of peace and I want to show the world what I'm made of. Don't get me wrong - sometimes out of the blue, the same fear, self-doubt and embarrassment that I felt in the early days of having to use the walker creep in and nestle within me, but I know that I am loved by a great God and no matter how I have to navigate to get around, He's with me every step of the way.

Fun Fact February

Hey ya'll!! It's February :) Everything is going fine on the dystonia front. Nothing new to report except that I love, love, love my new walker! (Something I never thought I'd be saying at 34.) I haven't fallen - yay! Even the cold weather hasn't made anything worse. I am very, very thankful! Since everything has been going well, I thought I'd use this blog post to list some fun, relatively unknown, facts about me. I saw something similar going around Facebook and I thought it would be fun to do. Here are 28 (one for each day in February) facts about me (in no particular order!):

1. I hate being late. So much so that I would rather skip an entire event then walk in late.
2. My childhood nickname was Goose. I have no idea why, it just was. My mom never called me Stephanie; it was Goose.
3. Upon first getting glasses, I made my brother switch the channels on the VCR while I stood at the very back of the family room and read off the channels to him. I couldn't believe all that I had been missing before getting glasses (and later on, contacts.)
4. I have always wanted twins.
5. I am the oldest of 11 grandchildren on my Mom's side and the only girl. On my Dad's side, there are also 11 grandchildren and I am one of only 2 girls. My cousin's name is Bethany - our names rhyme!
6. I had two imaginary friends growing up: Ratch and Rack. Ratch was a boy, Rack was a girl (I think!)
7. My brothers and I used to play this game: If Mom had just gone to the grocery store and it was raining, we would go get in my parent's closet and sit in the laundry baskets and pretend that our house was flying. We were OK because we had enough food to last us a long time. The rain and wind outside made it more adventurous :)
8. I have an unnatural, horrific fear of snakes. I can't even look at pictures of them without being scared.
9. When I was 13, we moved to Tennessee. Mom and I were in the car one day going down the Interstate. I looked over and saw satellite dishes and I told Mom that I was going to work at that place one day. I didn't even know what it was, but I figured it had to do with TV. I've been working there now for 10 years this year.
10. My hair didn't turn curly until I hit puberty.
11. I have an uncanny knack for picking up and remembering (sometimes useless) media facts. Ask me about any actor/actress, TV show, movie, song, and I'll probably know something about it, even if I've never watched the show/movie or heard the song.
12. I have an excellent memory - not photogenic - but pretty good nonetheless.
13. I love, love, love celebrating my birthday and ask for the same cake every year: yellow cake with chocolate frosting.
14. I own every episode of ER and House, M.D. and I regularly re-watch them.
15. I paid off my student loans in 2 years. This couldn't have been done without my parents allowing me to live with them, so they get credit too for this feat!
16. The first concert I ever went to was Christian music artist, Rebecca St. James
17. I learned to tie my shoes by accident. I was at my neighbors house, playing with my friend. I was pretending to tie a show when, somehow, I actually tied a shoe! I ran home and grabbed one of my Dad's shoes out of his closet and showed my mom. Then I proceeded to take the shoe with me everywhere I went that day until my dad got home from work. Then I ran out and showed him. Next up, I didn't want Velcro shoes any more.
18. The first time I shaved my legs, I wasn't sure if the blade was sharp enough, so I ran my thumb across it. It was sharp enough!
19. The first (and only!) time I've ridden in an ambulance, I was unconscious and don't remember any of it.
20. I love the Australian accent.
21. I had to have braces twice.
22. I got caught in a bathrobe with soapsuds in my hair during a fire alarm at college. It was November and I was freezing and firefighters were filing past me. Lesson learned. I never took a shower at night again while in school :)
23. I choreograph figure skating routines in my head.
24. When I was a kid I dreamed of getting married on the 4th of July. I would have a white dress, my bridesmaids would wear navy blue and carry red roses and there would be fireworks going off in the church (yes, IN!). Thankfully, for all involved (including the church!), my tastes have changed and I would much prefer an autumn wedding.
25. I'm fascinated by medicine.
26. Hearses freak me out.
27. I've never traveled outside the continental United States.
28. I never thought I'd be one to exercise, but now I do 4 times a week and I love it!

And there you have it - 28 random (and they are random, aren't they?!) facts about me. I hope you had fun reading through them. They were harder to come up with then I initially thought! Happy February!

Merry Christmas and Happy New Year!

Technically, it's not Epiphany yet (that's tomorrow), so it's still Christmas! I wanted to wish all of you a very merry Christmas and a very blessed new year. My Christmas was spectacular. It really was. My faith in the Lord and my family always make it that way. This year, since my mom was nursing a broken shoulder, I got to cook. I'm not a cook - or so I thought - but I have to admit, I had fun doing it this year. I didn't make Christmas dinner, if that's what you are thinking, so get that idea out of your mind. My grandmother did that! But I did make two sausage, egg and cheese casseroles, a cherry pastry ring, a gelatin ring, cookies and corn casserole, so I did pretty good! Christmas Eve was magical, as it always is. There is nowhere else I'd rather be on Christmas Eve than in church. Nowhere! Dad preached an excellent sermon on joy. There was Silent Night sung by candlelight. There was communion. Perfect in my book. In between the 5pm and the 7pm service, I vacuumed the entire sanctuary (you wouldn't believe what a mess those candles make!). It's a preacher's kid's responsibility! I'm only kidding there. I just happened to be there, love to vacuum (I know, I'm weird) and offered to do it. Between the 7pm and the 11pm services, my family went over to my grandmother's house to eat Christmas dinner. She really out-did herself! It was wonderful. After that, it was back to church for the 11pm service. I don't have to go to every service on Christmas Eve, but I absolutely love doing so! Technically, I didn't go to the 5pm service; I arrived near the end, so I could see everyone :) But, I did go to both the 7 and 11. Christmas Day was filled with joy. My parents make every Christmas special. They just do. I can't explain it, they are just awesome parents and they make every celebration a memorable one and I am blessed to have them as parents! My gifts were awesome. I wasn't expecting anything (although I did give a list of things I wanted, I also said I didn't have to have any of the things on the list!). One of the most spectacular gifts was a walker. Yes, I know, I'm not 80 yet! But, I now have a state-of-the-art European style walker. It is in one word: AWESOME!!!!! My mom really did her homework in researching the best walkers. This walker is so cool (as walkers go!). There are no wires on the outside (this is what makes it the European style - ha!). It looks more sporty, than medical. I LOVE it!!!! The wheels on it are bigger and it makes me feel much more stable. I never in a million-billion-trillion years thought I would ever ask for a walker for Christmas, but I did and I got just what I never knew I wanted! I also got a new vacuum (see my comment above about loving to vacuum) and it's awesome! It can go on both carpet and hard floors and it has this Febreeze-like air freshener inside of it, so the room smells amazing as you're vacuuming. But above all the presents (and believe me, there were a TON of presents, all of which my mom wrapped in DIFFERENT wrapping paper: not one had the same paper!), it's my love of Jesus, His love of me, my family and my love for them and their love for me that makes Christmas so special, spectacular and filled with so much joy. The older I get, the more I realize this. It's the little moments, the unexpected moments, the looks on people's faces that I'll remember the most. But, I do LOVE my walker and my vacuum and my other gifts (just in case you didn't get that!). Another gift this Christmas and New Year's has been the fact that my walking has been pretty good. I don't know who or what to attribute that to, except to God. So, thank you, Lord for such good walking days! They aren't without a walker or cane (unless in my parent's house where their carpet is like walking on sand for me), but they have been such good days. I haven't felt off-balance or like I'm going to fall. This week it's supposed to get frigidly cold and I am not looking forward to that. I usually have lots of problems walking in that kind of weather, but who knows, maybe my gift of walking good (for me) will continue.

This year will mark 10 years since I started having the first symptoms of dystonia. I think this is a good year (in the words of Frozen!) to "let it go". To be bold and courageous. To not care what other people think about me using a walker. To go where I want to go, do what I want to do in spite of having to use a walker or cane. I'm letting go of relying on other's opinions of me to make me happy. I'm the one who has to live in my body every day, so I'm going to let go of being embarrassed by circumstances I can't control and start living life to the absolute fullest.

Ahh....the above is SO easy for me to type, but SO hard for me to actually do in real life. This is where faith in God comes in. I put my faith in Jesus. I know the Lord can do incredible things with broken people. I am certainly broken (in more ways than one!). But if He used Abraham, Moses, David, and all the rest, I know He can and will use me. So, I'm just going to "let it go" and let God take control.

I hope you all have an amazing, God-filled year ahead. Just remember (and remind me if I forget!!)...Let It Go and Let God Take Control! Happy 2015!!

An update!

I'm baaack!!!!!!!!!!!!!!!!! OK, so you all probably didn't miss me, but after taking a little over a month off of blogging to recover from my 30 days of non-stop blogging about dystonia, I thought I'd write a post! It feels good to write, but it sure felt good to take a break too. :) Not that I don't love blogging, but when I set out to do something, I'm kind of obsessive about it. The 30 days of blogging was on one hand fun and on the other hand stressful. It was stressful because I felt that I HAD to do it - haha!! But, like I said, after this (little over a) month long break, I'm excited to blog again! Who knows exactly what I'll blog about but hopefully you'll like it just as much (or even more?!) than the dystonia blogging. It'll definitely (for the most part) revolve around dystonia and neurological issues, but it won't be completely about that either. I may throw some random posts in about crazy things that happen in my life.

Today was my return appointment to see Dr. M., my neurologist. I also decided to take the day off from work. I got to sleep in a little, but not much! I'm really glad that I took the day off because Dr. M. was running really far behind. But, I didn't care, because I wasn't rushing to get back to work. :) I, again, was the youngest person in the waiting room - this time by a good 60 years (I'm not even joking!). I found it interesting that when I signed in, the receptionist had me fill out another form and I quickly realized it was assessing whether I had any risk of having Ebola! It asked if I had a fever of 100.4 or above and if I or anyone I had contact with had been out of the country in the last few weeks. My wait in the actual waiting room wasn't all that long. Dr. M.'s nurse came and got me. I love his nurse, Linda. It's great when you not only like your doctor, but the nurse that works with him!

My wait in the exam room was long, I won't lie. But I didn't care. I read an old issue of People magazine to pass the time and resolved not to touch anything in the room, so as not to break anything (which seems to be my MO in his office! The very first time I met him I "broke" this brain he had sitting on the desk. He assured me I hadn't broken it, that it was supposed to come apart like that. One time, I almost broke a replica of a skeleton he had on the desk. Needless to say, I didn't want to take any chances today - even though there was a spiffy looking brain that I wanted to touch (different from the one I "broke" years ago!).) Eventually Dr. M. made his way to my room. I love this doctor! His demeanor is just so awesome. He walked in the room and immediately apologized for being so late. I had heard him remark to Linda in the hallway that he was drowning in charts. He asked how I was and if there had been any changes. I told him that I was good - no new changes. I told him about the beach trip I took in May where I walked unassisted in the sand. He smiled. I asked if he wanted to see the video that my dad had shot and he did, so I showed it to him and he was very happy! He remarked how I was walking in the soft sand and I told him that the harder the sand was, the harder it was for me to walk on it. I asked him why that was and he said he could speculate, but didn't elaborate. He said he would write me a prescription to move to the beach. I told him if he did, he'd have to come too, because I'd have to have a doctor there that I liked. :) He did an exam, (reflexes and that sort or thing. I asked if it hurt him to keep knocking his thumb with the instrument he used to get my reflexes (so that it's not directly hitting my knee). He said after 15 years, he was used to it!). He asked if I was experiencing any dyskinesia (brought on as a direct result of the medication I'm taking.). I had to tell him yes, I do have this, especially at times when the medication is wearing off, but it's OK. Unfortunately, there is really nothing he can do for it anyway, so I'm glad that it hasn't bothered me too much! He also asked if I was hallucinating. Thank God, to this question I can say NO!!! The two greatest symptoms of the medication that I am on are dyskinesia and hallucinations. If I have to have at least one of the side effects from the medication, I am SO thankful that it's dyskinesia and NOT hallucinations. Thank you, Jesus!!! See - even in a "bad" thing, there is a silver lining!

Dr. M. had mentioned the last time that I had seen him that I was on an awful high dose of medication. But it works for me. Anything less than what I'm on doesn't seem to do anything for me (and believe me, we've spent a lot of time trying to get the dose right!). This time, I told him that, even though I haven't had the official blood test yet, I think I found out why I have to be on such a high dose for it to work. It seems that on every medication that I take, I'm on one of the highest doses you can take. I didn't realize this until another doctor that I see noticed that I was on an unusually high dose of the medication he prescribes and I had none of the side effects he assumed I would have. That conversation sparked my memory to the conversation I'd had with Dr. M. I then told him about Dr. M.'s shock at how high a dose I was on for the medication he prescribes and then it clicked in this other doctor's mind that I have a liver enzyme that's off. He said it would make sense. When I told Dr. M. this today, he immediately (before I got the words out of my mouth) said, "you have a liver enzyme that's off, don't you?" So, now I just have to get the official blood test done. I haven't gotten it done yet, because all of this was discovered after I had already seen my internist for the year and I don't really want to make another appointment, unless I absolutely have to (meaning, I'm sick!). Not, that I don't like my internist - I do, I just don't like having to make another appointment. :)

This liver thing is called Cytochrome P450 2D6. My doctor said that he believes I am an ultrarapid metabolizer. According to Wikipedia (I know, it's not the end all, be all, but I took the following definitions directly from it because I'm no scientist and it had a good explanation!): "Cytochrome P450 2D6 is an enzyme that in humans is encoded by the CYP2D6 gene. CYP2D6 is primarily expressed in the liver. There is considerable variation in the efficiency and amount of CYP2D6 enzyme produced between individuals. Hence for drugs that are metabolized by CYP2D6 (that is, are CYP2D6 substrates), certain individuals will eliminate these drugs quickly (ultrarapid metabolizers) while others slowly (poor metabolizers). If a drug is metabolized too quickly, it may decrease the drug's efficacy while if the drug is metabolized too slowly, toxicity may result. Hence the dose of the drug may have to be adjusted to take into account of the speed at which it is metabolized by CYP2D6."

St. Jude's website gives the definition of ultra rapid metabolizers as "subjects [that] have multiple copies of the CYP2D6 gene, and therefore greater-than-normal CYP2D6 function. About 2 in 100 people are ultra rapid metabolizers."

So, basically my body eliminates the drugs that I take too quickly thereby making the drug (pretty much) useless and there's your medical lesson for the day!

I had a great appointment with Dr. M. and I am continually reminded how blessed I am to have him as my neurologist. It's been a good day and I am thankful for life in general. It might not always be great, but it's definitely worth living - walker and all! :)