MRI

Today I had an MRI of my brain done. It's not my first and it probably won't be my last. It went great (from my perspective anyway, I actually have no idea what the MRI says). After ten years and several MRIs, I guess I'm getting the hang of them.

Comparing the MRI I had done today to the very first one I had done - well, the comparison is like night and day.

First MRI: I opted to take medication to calm me down, which made me extremely groggy, but able to get through it without freaking out. I didn't know whether I was claustrophobic or not, but I did/do know that I have panic attacks, so I did NOT want to have one while getting the test done. My dad drove me home, and everything he said to me was the funniest thing I'd ever heard. I was so out of it, I couldn't figure out how to put my watch back on (which thoroughly entertained the nurse) or unlock my front door (which made Dad have to get out of the car and help me). I thought I could go back to work after having it done - ha! No way. I went straight home and fell asleep. I slept the entire afternoon away and straight through the night, only waking up in time to go to work the next day.

Today's MRI: I drove myself to get it done, and didn't take any medication to calm me down. I didn't freak out or have any panic attacks. I actually almost fell asleep! How does that happen?! The only thing keeping me from doing so was the thought that if I did fall asleep and accidentally moved, they would have to do the test all over again, so I stayed awake. I also drove myself back to work and worked a full day.

From someone who once had to have medication to get the test done, to almost falling asleep during it, I guess you can see that I've gotten pretty darn used to MRIs! For those that have never had an MRI (especially of the brain), it's an experience. They put this mask thing over your head and then send you in this tube thing (I know, my medical terminology is stellar!). Thankfully though, there's a mirror that you can look in and see the outside world, so it makes it 1,000 times less claustrophobic. It's super loud too - so much so that they give you ear plugs. It's a bunch of clicking and whirring noises. The MRI I had done today had to be done with and without contrast, which means halfway through the MRI Tech comes in and gives me an IV of contrast dye. Today's MRI only lasted about 35-40 minutes.

Now, I just wait. This is the part I HATE the most. I have to wait for the radiologist to read the MRI and then I have to wait for him/her to send the report to Dr. L. Then I have to wait for Dr. L. to make the referral to Vanderbilt for the deep brain stimulation. After that, I have to wait to see if Vanderbilt thinks I'm a good candidate. Then if they do, I have to wait for them to call me. Did I mention that I HATE waiting? But as a co-worker said today, God's in control and nothing will happen until the exact time it's supposed to happen. If you pray for me, please don't pray for patience. Because if you pray for patience, God might answer by making me wait more. :) Just pray that everything will be done in His time, and until then, I'll wait.

Keeping Hope Alive

I am so thankful for Jesus and for His renewing of my spirit. Just when life seems to get tough, he throws me a rope and keeps hope alive!

This morning was my appointment with my new neurologist, Dr. L. To say I was a little nervous, is probably understating how nervous I really was by like 1,000 times. Don’t ask me why, I just was. I was so thankful that Mom offered to go along with me. She’s been my ever-faithful companion to neurology appointments.

One thing I wasn’t expecting – Dr. L. met me at the door and walked me back to the exam room. Mom later said that she thought he was a nurse at first because she’s never seen a doctor actually meet a patient at the door. But it saves time, if you think about it. In one fell swoop, he could watch me walk and get my history without me having to repeat what I would have just told the nurse. Efficiency, oh how I love you! :) But don't get me wrong, nurses are wonderful and needed! It's just that in this instance, I was super impressed that he came and got me and walked me back.
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I gave Dr. L. my history and he looked at my MRI (which was taken back in 2009). It’s always good to have Mom there because she fills in things that I forget to mention, she can answer questions I have no idea about (like those about my birth, when I started walking and when I was a child) or she corroborates my accounts of things. I felt like I was being rude by talking the whole time, but I guess he did need to know everything! Once he was caught up on everything, Dr. L. performed the routine neurological tests that every neurologist does. I should know the names of these by now, but I don’t! Most have to do with reflexes and coordination. Then we started talking about what could be done going forward. He went over the medications I’m taking now, those I’ve taken in the past and what I've had done in the past (physical therapy, BOTOX injections, shunt surgery…). He said there were a few options: we could add different medications, do physical therapy with a therapist that works only with neurological patients (why hadn’t I thought of that before?!), or try deep brain stimulation. He asked if any of my other doctors had ever mentioned deep brain stimulation (DBS) to me and I told him no. But my ears perked up, because it wasn’t the first time I’d heard of DBS.

Deep Brain Stimulation: It both scares the living daylights out of me and intrigues me all in the same thought. I had first heard of it years ago. When I first started having neurological symptoms, I self-diagnosed myself with every weird, fatal, never-heard-of-before and rare neurological disease I came across (maybe I shouldn’t spend so much time watching medical shows!). And because of this, I also researched and read about every possible treatment known to man. So, I had heard of DBS. I had even done some research on it, but after the shunt surgeries both failed, I decided to wait on bringing it up to any doctor because back then (6 years ago), it was just in its infancy of being a treatment for dystonia. I'm not going to lie, I decided to let others go before me before I tried it! None of my doctors ever brought it up as a treatment either, so I didn’t press the issue. I think I may have mentioned it once to one of them, but nothing came of it. But then there was today: six years down the line and a new doctor. Dr. L did mention it as a treatment. I asked him more about it. He said that it has been found to help dystonia patients significantly. He also said that the results of DBS on dystonia patients are a little different then they are on Parkinson's tremor patients. With a Parkinson’s tremor, the tremor instantly goes away when the surgery is performed. With dystonia he said it takes a few weeks/months after the surgery to see the benefits. I asked him if I’d be awake during the surgery (as I had seen in videos of DBS and on TV) and his answer was yes. This is because the doctors would have to ask me questions and make sure the probes were in the right places. Kind of cool, but also kind of scary.

I told Dr. L. I was up for anything – medication, physical therapy, surgery – whatever. I’m ready to take on this battle again and not just settle for having to walk with a walker my entire life. I needed a little break, I think, after the failed shunt surgeries, but now, I’m full steam ahead ready to fight again. Don’t get me wrong. The past 6 years have NOT been a waste. They’ve been a huge growing field for me. I loved my previous neurologist and miss him greatly. He was very insightful and I thank him for everything he did for me. The truth is, it wasn’t until this past year that I fully accepted dystonia as a diagnosis, that there was something wrong with me and the fact that I might never get any better than I am today. But I think I had to accept that as fact to be able to move on and have the energy to fight again.

What Dr. L. did for me today was give me hope. Hope that I can walk again without assistance. Hope of new procedures and surgeries. Hope of new discoveries and innovations. Hope. I had absolutely no expectations for today’s appointment and I was just blown away by the outcome of it (in a good way!) and the hope I was given.

So the plan for now is to add another medication to my routine. If the medication works, great. I’d stop there. If it doesn’t help, then I may also try more physical therapy. I also have an MRI set up for next Monday morning. The MRI is for the “in the meantime”. Meaning that, Dr. L. is referring me to Vanderbilt for the DBS and Vanderbilt needs a new(er) MRI for the referral. If the medication and the physical therapy don’t work and I do decide to go forward with the deep brain stimulation, the ball would already be rolling on that. Then I wait to hear from Vanderbilt and we go from there. I feel truly blessed to have met and gotten in with Dr. L. I see him again in December. I also have to thank my friend, Dave for giving me his name and saying that I should go see him. To go from thinking “this will be the rest of my life” to hope…it’s a beautiful thing and I'm truly excited about what the future holds.

What's Up Wednesday

Hi everybody! You know it's been awhile since you last wrote a blog post when you 1) can't remember the URL to your blog and 2) you can't remember the username and password. It really hasn't been that long, but I did encounter these two situations. I'm sorry I've been absent for awhile, but I promise I'll be posting more in the coming days as there are more things to post about!

As for today...I just read a friend's blog and she posted something kind of fun, so I thought I'd do the same. It's called "What's Up Wednesday" and here it goes...

What I'm Eating this Week...
I'm kind of boring. I'm one of those people who eats the same thing every day. I won't bore you with it, but I do eat breakfast, lunch and dinner along with three snacks. One thing I've been turned on to though (within the past several months) is Almond/Coconut milk. I'm the type of person that only likes milk in cereal or with something chocolate. Someone suggested I try almond/coconut milk and I have fallen in love with it! I put it on my cereal too. It's awesome!

What I'm Reminiscing About...
I was reminiscing with someone the other day about this time I ran over a snake with my bike when I was little and it's traumatized me ever since. Not because I might have hurt/killed the snake but because I HATE snakes and it scared me to death. Even the sight of a picture of a snake scares me! I told her that for dinner that night my mom made chicken tetrazzini and used spaghetti noodles and those noodles kept reminding me of the snake I had just run over.

What I'm Loving...
Sunrises
clean houses
baby giggles and smiles and getting my sweet niece, Genevieve, to walk!
family
TV watching

What I've Been Up To...
Work - I love my job!! I am so blessed to be doing what I love and loving what I'm doing. I always thought I'd get married and be a stay-at-home mom, but so far life hasn't taken me down that path. Instead, I've fallen in love with what I do for a living and I couldn't be happier!

What I'm Dreaming...
I day dream all the time. I'll let you in on a little secret. I like to dream about acting in a TV show. I take shows that are already on TV and make up a character for myself and day dream about acting. I know, I'm super weird! I also dream of figure skating. I've mentioned this before, but I make up skating routines in my head. If I'm listening to a song, I make up the skating moves to it. What's weird about this is, I can't even STAND on ice, much less skate! I guess that's why they call it dreaming.

What I'm Working on...
Being a more patient, kind and compassionate person. Holding my tongue and not getting into any disagreements or fights with anyone.

What I'm Excited About...
Garth Brooks concert!!!!!!!!!!!!!!!!!! If you know me, you know how excited I am about this concert!

What I'm Watching/Reading...
My current favorite TV shows are: Chicago Fire and The Night Shift. I sadly got rid of cable (it was just too darn expensive). I really, really, really LOVE TV, so it did pain me to get rid of it, but I'm doing surprisingly OK with it. I'll see about my return to cable in the future but for now, I'm OK with broadcast only.

What I'm Listening to...
Did you read what I'm excited about? GARTH BROOKS music of course (to get ready for the concert!). Also, I'm really into Eric Church.

What I'm Wearing...
Dresses, dresses and more dresses. I LOVE dresses in the spring/summer (or just about any other time too!)

What I'm Doing this Weekend...
Hanging out with my niece, Genevieve!!!

What I'm looking Forward to Next Month...
My neurology appointment with the new neurologist
My brother, Steven's graduation from Graduate School
My brother Steven's birthday
The Garth Brooks concert

What Else is New...
You'll just have to stay tuned to find out!

I hope you got some enjoyment out of reading this. At least you know a little more about me :)

An appointment

As you know, I’ve been trying to get in to see a new neurologist. Thank you again to everyone that recommended someone. I researched the names given to me and decided on one and then began the process of becoming a patient.

On a side note - I’m convinced that we’re called “patients” because we have to have patience in getting a doctor, getting a diagnosis, getting better. It’s an art, not a science, right?! ;)

But I did my part - getting a referral and getting my records sent and then I waited.

Last night, I prayed specifically that either the neurologist’s office or my internist’s office (the one who gave the referral) would call me today to let me know if I was accepted as a patient and could get an appointment. I know, it may seem frivolous to some to pray specifically about that, but I didn’t know what I was supposed to do next. Was I supposed to call them back and get an appointment or were they going to call me? Did they have everything they needed? Did this neurologist even want to take me on as a patient? I tend to worry about frivolous stuff like this, so last night I just took it God and decided He could worry about it for me.

This morning I was at work when my desk phone rang. It was my internist’s office calling to say that I have an appointment scheduled for May 11 with the new neurologist. You can’t tell me that God doesn’t answer prayers, no matter how frivolous they may seem to outsiders! What’s important to us, is important to God.

So now I wait until May 11. Until then, I'll be praying that this new neurologist will be the right fit and that everything will go well.

Blessed!

Ten years ago today I was blessed to have been able to buy a house. I was 24 and had just finished paying off $20,000 worth of student loans in December 2004. Mom and Dad had graciously said that I could live with them as long as I was paying off the loans. But when the loans were paid off, I knew the next step was to move out! The house that I am now celebrating 10 years in has been a blessing in disguise. I have a ranch house, meaning no stairs. Who would have thought that would have come in to such big play just a few months later when I started having major walking issues?! God knew! Also, when I bought the house and had a house warming party for it someone mentioned that the halls in the house seemed extra wide, like they were handicap accessible. Again, who knew that this would come into such huge play, when now 10 years later I use a walker to get around?! God knew!

Ten years later and I cannot believe that I have owned my own home for that long. When I “planned” my life (what’s that famous Woody Allen quote? “If you want to make God laugh, tell him about your plans”.), I never thought owning a home would be such a big deal. My plans were to get married right out of college and have 5 kids before I turned 30 and to be a stay-at-home mom. What I didn’t plan was to be single, pay off my student loans in two years, start having major walking issues, spend my 20’s going to doctors trying to figure out the walking issues, paying off my first car in a year, landing my dream job or buying a home. But now it is 10 years later and my initial plans have been completely, utterly turned on their head. I did not get married right out of college...it's 13 years later and I'm still not married. I didn't have 5 kids before I turned 30 - I don't even have one. And because I don't have kids, I’m not a stay-at-home mom. What I do have ten years later is a house I now call home, which I’ve managed to keep from crumbling to the ground, I had a 9 year period where I didn't have to make a car payment and now I have a “new” car (bought in 2011) that I’m paying off which is perfect for hauling my walker around in, a diagnosis of dystonia so I’m no longer going from doctor to doctor trying to figure out a mystery illness, and my dream job of working in the media (and actually working in the field I went to college for!) I say all-in-all I’m pretty darn pleased with how the Lord took everything I once thought I wanted and needed and completely turned it on its face! In my wildest dreams, I never would have thought my life would be like it is now. I’m thankful and blessed with all I have.

On the dystonia front – again, I must emphasize how blessed I am. I’ve been worrying about medication. I was completely out of refills when I got the letter from my neurologist saying that he was moving out of state. I called him and left a message with his nurse and did get a refill. However, when I went to pick it up, I noticed that it was only for a week’s worth of medicine. That’s when I started to panic. I’m in the process of getting a new neurologist, but even if I got one today, I probably wouldn’t get in to see him/her until months from now. So, I called my family doctor, explained my situation to the lady who answered the phone and my family doctor prescribed the medication I needed. Thank you, Lord that I have enough medication to get me through until I (hopefully!) get in to see a new neurologist. It’s one less thing I have to worry about (and worry really does affect the way I walk, interestingly enough!) Again – I am blessed to have an Internist who knows me and knows that I need the medication and is not afraid to step in and prescribe while I’m transitioning doctors.

I’ll end this post by saying, thank you. Thank you so much for reading. I am SO encouraged by all of the comments you leave. I’m always scared no one’s going to read these blog posts and then am humbled when you do. So, thank you, thank you for reading. Once again, I am blessed, blessed, blessed!

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!