I Fly to Get High

It's about time for an update.  Questions have been trickling in for a few months now and I realize that a lot of you are wondering what is the latest.  Nothing has changed since the last post.  The doctor still thinks it's ADEM which means it was a reaction to the flu vaccine.  I was so lucky, not just because it wasn't cancer or MS, but because my case of ADEM was so mild.   Most people with this condition end up in a coma or paralyzed or dead.  Or maybe those are just the reported cases.  Maybe there are tons of people walking around with varying forms of it, not knowing, because it's mild.  That's my guess.  The vaccine company acts like it's so rare, but my doctor told me he had seen 5 cases this year.  It's obviously not as rare as they are making it seem.  My doctor said he still recommends vaccinating to prevent childhood diseases, but he doesn't give his family flu shots and he said no more for me.  He thinks that vitamin D supplements are actually more effective in preventing flu anyway.  My kids think the new no-flu-shot-policy is great news.

I'm still on guard all the time watching for MS symptoms.  I look forward to two years from now because sometimes that's how long MS patients go between attacks.  I feel like if I can go two years without another episode, I can safely say it's not MS FOR SURE.  I have a follow-up appointment in November when I will be getting another MRI to make sure there aren't any new lesions.  But with my little friend Lottie Crawford still praying for me every day, I don't see how that could possibly happen.  She's been praying for me all this time, even in primary!  Bless her!

I continue to be touched by the heartfelt outreach of so many of you.  Every now and then I see a friend or meet someone that was following the blog and they tell me, with tears in their eyes, about how lovingly they hoped and prayed for me and it makes me so emotional!  I can feel the love they have for me (sometimes complete strangers) and I can't express to them how much I appreciate their support and their prayers.  I truly attribute all of my success and recovery to the collective prayers of my family and friends whose hearts were filled with so much faith and love that our Father in Heaven could not be restrained from pouring out blessings on me and my family.  Feeling that love from God and everyone else was such an amazing experience that I will always remember.

The only symptom that remains is the speech slurring.  I don't think anyone would notice it that didn't know my situation, but I know those that do can hear it.  It's the most frustrating when I want to speak quickly.  I once had one of my young women ask me if I was from Las Vegas.  I said, "Yes, how did you know?"  She said, "Because people from Las Vegas talk really fast."  Haha, I had no idea.  But it's true, I like to talk fast and that has become very difficult.  My brain thinks fast and when I have a lot to say, I just want to roll it all out there but it all gets twisted on the way out.  I still believe the day will come when I won't even remember the speech difficulty, I just have to keep exercising my brian.

Speaking of brain exercises and things getting all twisted up, I have a recent addition to my list of future circus acts: spinning fire.  I have started taking poi spinning class.  Now if you want your brain to feel completely done in, take this class!  It's so hard to get your head around what you're doing and getting your dork side to cooperate with your dominant side.  This is super new for me.  Step one: practice poi.  Step two: glowing LED poi.  Step three: lighting poi ON FIRE.  But for now, I leave each class a little bit better but also feeling a little bit like I have a learning disability.  Why can't anything ever be easy?!!!  It looks so easy when YOU do it Jennifer Wilkins!!!

My studio is undergoing a makeover.  It is switching from J&M Expressions to Cirque Asylum which is a much better description of what goes on there.  It's just a bunch of crazy freaks!  The other day I was in the studio and I had this total out of body experience like, where am I?  On my right, there was an amazing acrobat on the aerial pole (a metal pole that is free hanging from the ceiling, which I imagine makes the regular pole moves twice as hard).  Let me just tell you, there is a whole side to pole that you don't know about that has nothing to do with stripping.  These girls at my studio are extreme athletes and acrobats who do beautiful and amazing things on the pole.  To her left were two instructors rocking the LED poi practicing for an upcoming recital.  On the floor, in front of me, there is another girl stretching in a full middle split, the kind where they lay their stomach flat on the floor.  To my left, there is another guy who is a poi freak and his wife, a beautiful dancer on lyra, which is the hula hoop shaped aerial apparatus used by circus freaks who enjoy doing contortion with cold, hard, metal digging into their back.  I wish I had filmed this moment.  I literally felt like I was backstage at Cirque Du Soleil.  I was feeling totally out of place as I repeatedly smacked myself in the face with my poi.  But my instructor was right there assuring me that I would be there soon enough, as she always does.

My awesome husband kindly filmed another video of my progress on the aerial silks, of course making me look better than I really am.  But I really have come a long way from where I started and I can't describe the thrill of that.  It's so true when Jen jokes that she's like a drug dealer because the first class is free.  After that you're hooked.  So maybe I should just start by saying, "My name is Lauren Wilkins and I'm a cirqueaholic."  The studio is coming out with t-shirts.  I have requested one that says "circus freak in training"    They will also have shirts that say " I Fly to get High"  That couldn't be more true.  All I can say is, IT'S SO MUCH FUN!!!

I can tell these videos are really going to help me improve because it drives me crazy to watch the footage and realize that I needed to just slightly adjust a hand or a foot to create a beautiful line or hold a pose a little longer and I keep screaming at the video, "Point your toes!"  But, honestly, I am thrilled with my progress. It feels so good to be working so hard and dedicating so much time and know that I am getting closer to my goal.  Right now, I'm aiming to get my pull-up all the way to the top by my birthday in less than two months.  Not sure if that's possible  or not.  It only took me six months to get one inch off the ground, but I'm going to go for it!

Aerial: The Dream

I've been meaning to write about this for a long time but just haven't gotten around to it.  It's pretty much been a major focus of my life for the past six months minus that little detour I took in January.  Honestly one of the biggest disappointments was realizing that when I had brain surgery I wouldn't be able to keep training and I would lose all of my hard earned progress.  Because, for some reason, I never thought for one second that it was all over for me.  Somehow I always knew I would come out on top and I could still picture myself becoming an aerialist one day.  I don't know why I believed that.  I don't know if I was in denial or if it was the Spirit reassuring me that everything would be okay.  I think it might be because I had been praying to be able to be an inspiration and I thought maybe the diagnosis was an answer to that prayer.  Maybe not such a smart thing to pray for, looking back.

I have always wanted to be a dancer.  When I watch people dance, I can't just enjoy watching and be entertained.  It causes me pain that I'm not the one dancing.  I can't explain it but I've got it really bad. When I hear a really good song, I just want to be one with the music.  Don't ask me why I haven't taken dance lessons all my life.  I think it took me awhile to realize that it was my passion.  I remember thinking, as a teenager, it's too late.  I can't start now, when everyone else has already been taking lessons since they were little.  And now, here I am, thirty-five years old, in circus class.  If I had had the confidence to just start where I was, I could have been so far ahead of where I am right now. Instead, I just wasted time, being afraid to try.

When I went to BYU and was picking out my college classes, I saw a beginning precision dance class.  I thought, "This is my chance!" I started taking that "beginning" class and felt like such an idiot.  I guess by "beginning", they meant you've only been taking dance since you were 8 instead of since you were 3 because it was way over my head.  I talked to my teacher after class one day and told her I had no formal training and asked if I would be able to succeed in this class.  She said, "No."  So I quit!  Once again, it was too late for me.

Until a date took me to the BYU Ballroom Dance Concert and I fell completely in love.  Like, literally, me and ballroom dance were running through a field of wild flowers in slow motion towards each other.  After that, I spent an entire summer taking ballroom lessons trying to prepare to try out for the ballroom dance team.  Unfortunately, the lessons I was taking were the wrong style and I just wasn't quite trained enough to make the team.  Although, I did get some encouraging comments from my ballroom instructors at BYU that I had "a lot of potential."

Enter Joe into the scene.  I completely dropped out of all my classes so I could be a full time girlfriend.  Stupid, I know.  I'm sure my mom is still mad about this.  Sorry Mom!

Over the years, I have made several attempts to learn different styles of dance but they always end in me feeling like I started too late and will never be good enough.  And lately, the other problem has been whatever stupid condition I have that prevents me from losing weight.  I always think, "No one wants to see someone dance that isn't thin!"  It seems like a prerequisite for being a dancer.  I just knew that my weight would forever hold me back and I would never be able to live my dream.  Until I watched the following video that my mom posted on YouTube:

The girl in this video just blew me away!  She has no legs and still she decided that she could become a gymnast!  How in the world?!  I realized in that moment that, if she could become an award winning athlete with NO LEGS, then I could certainly learn to dance whether I'm skinny or not!  I have NO excuses!

So, once I got past the point of not believing in myself, my next obstacle was finding a dance class for adults.  There really are almost no opportunities for adults to learn to dance.  If you already are a dancer, there are adult dance teams and adults can become dance teachers, but if  you aren't already trained, that's just too bad for you!  There are plenty of classes for couples, but, trust me, I've been down that road.  It just doesn't work very well when your spouse isn't interested.  He would go along with it for my sake but I'm not interested in occasionally, casually learning a form of dance.  I want to completely commit myself to learning a dance style-every.single. day.

I started searching the internet for all the dance classes I could find that were offered to adults.  I found a few aerial studios that taught aerial silks.  I got so excited thinking about it!  But, of course, they were all in Salt Lake.  Then I found a studio that had just opened up in Pleasant Grove about ten minutes from my house!  And it was totally affordable, too!  Which is another problem with dance classes.  This was such great timing because this was the first year for me to have all of my children at school full day.  It was so devastating for me to not have them at home, I needed something fun and exciting to do instead of being alone all day.  It was intimidating to start because I knew it would be physically really challenging.  And walking into a dance class at my age and with my body type, I just didn't know what to expect.  I didn't know if I would feel totally out of place or what.

This is probably the number one thing I love about my studio (J&M Expressions).  It's so accepting and open to everyone.  There's no one telling you or making you feel like you have to be a certain age or certain body type to be successful.  My instructor, Jennifer Wilkins, acts completely convinced that every person in the room will one day get to the level she's at.  Maybe she's bluffing, but she's pretty convincing!  It's such a comfortable place to try something new and scary and HARD!!!

Holy cow, I can't believe how hard it is!  I think that having TV and YouTube has exposed us to so many crazy freaks in our lifetime that we underestimate the amount of strength and training that it takes to actually do crazy superhuman things.  I never would have guessed how challenging it is to learn aerial silks!  It takes an incredible amount of muscle to be able to lift your body weight and hold it for several minutes while you pose and extend mid-air.  And then there's the flexibility!  The most beautiful aerialists to watch are the ones who can contort and bend into amazing poses while they're in the air. But don't worry, it only takes YEARS to gain that kind of flexibility!  The biggest surprise of all was finding out how painful it is to lay forward or backward on an aerial silk.  When all your weight is resting on it and it's fully stretched, it feels like having a metal rod in your back or stomach.  Super painful.  Not to mention the discomfort of all the blood rushing to your head while hanging upside down.  Motion sickness while spinning, silk burns, wrapping your body in fabric that digs into you and cuts off the circulation in your feet and hands...ya...it's hard. The people that can do it well are NOT HUMAN.  So that's my goal, to someday not be human :)

You may wonder why I would be interested in this sport when I make it sound so miserable.  It is the most exciting thing I've ever done!  The first time I wrapped my foot in a foot lock and stood up off of the ground was the hugest thrill!  I love that, not only does this studio offer aerial silk classes, but they offer strength and flexibility classes that help you to actually make progress instead of feeling like, "Well, I guess this is too hard for me, I'll just give up now!"  I'm really loving it.  I do still get discouraged from time to time, but the thing that makes this so right for me is that, after years of unsuccessfully trying to lose weight, I finally have a way to see progress and results.  I can't lose weight in pounds but I can get stronger and start to do tricks that used to be too hard for me.  The first time I climbed the silk was so exciting!  And after six months of attempting pull ups and not being able to even lift my feet off the ground, today I felt my feet come off the ground for the first time!  I couldn't believe it, I couldn't even do the monkey bars when I was in elementary school!  It seems insane to think that in another six months I could be lifting myself completely into the air in a full pull up!  I will throw a party when that day finally comes!  All you skinny people have no idea how hard that is for the rest of us.

So, about praying to be an inspiration, that came from watching videos like the one about Jennifer Bricker and also this video about Arthur that most of you have probably watched:

I wasted so much time believing that I couldn't do the things that I wanted to do, that I thought I could document my journey to becoming an aerialist (my husband is conveniently a film maker) and maybe that could inspire other people the way these people have inspired me.  So my first thought when I was told I had a brain tumor was, "This is going to make the video so much better!"  And when I was told I had to shave my head, I thought, "That is going to be some great footage!"  It was disappointing that the doctor didn't want me to shave it myself because I couldn't video it, but now I'm so glad that I got to keep most of my hair.  Before the tumor,  I had Joe come to the studio to film some "before" footage to document where I started.  He edited it into a cute little video:

I know it's not super impressive yet, but that was kind of the point.  I want to be able to see how far I've come next time he comes to video me.  This video was shot after three months of training.  I was DEVASTATED when I had to stop training for surgery.  Just getting to where I was took an incredible amount of effort and I was going to lose all my progress!  But now I've been back for about two and a half months and I'm getting my muscle back and I'm almost back to where I was in my conditioning.

The lesson I've learned is that if you want something, don't let anyone convince you that you can't do it, especially you!  The only thing that has kept me from my goals all these years is not believing that I could do it and being afraid to look stupid.  And if I don't accomplish my goals until I'm 80?  Well that will just make for a better video!  How impressive is that?!  "The 80 year old aerialist"  how awesome would that be?

On another note, last Sunday I was released from being a Young Women's leader after FOUR YEARS.  No big deal, I just lost all of my best friends and my only opportunities to hang with girls and crack up! Ya, I'm a little sad about it.  But, no worries, because every Mormon's worst nightmare has just come true for me.  As if having brain surgery, cancer, and multiple sclerosis wasn't enough excitement for one year, I was asked to be the GOSPEL DOCTRINE TEACHER.  And standing up in front of almost the whole ward every other week teaching a room full of people who are all ten times more experienced than me and ten times more educated than me, is my idea of a good time!  What could be more fun than that?  Forget girls camp!

I truly once said, "If I ever get that calling, I'm leaving the church."  I'm glad that I get this opportunity to prove to Heavenly Father that I was just being sarcastic and that I would do anything He asked me to do because He has blessed me with miracle after miracle in my life and I could never repay him.  The best thing I can do to show my gratitude is to be willing to accept any calling or assignment to serve Him.  Who knows, maybe there will be another miracle and I'll actually become a good teacher!

Beautiful, Glorious, Second Opinions

Finally, the day of the appointment with the MS specialist arrived.  Joe and I have gone to all of our appointments together and I've really appreciated the company since it's hard to think of all the questions to ask and remember all of the answers, plus, those of you who know me, know that someone forgot to give me a sense of direction at birth and when I try to find my way to new places, I sometimes end up in the wrong state.  Joe wasn't going to be able to go to this appointment because he had a shoot (like as in film, not drugs or guns :)  My mom offered to go with me to my appointment.  But on the way to the appointment, Joe called and told me to pick him up at work.  He had finished early and wanted to come with me.  So now I had a whole team with me!  We should have gotten matching shirts.

While we were waiting to be brought back to the exam room, a patient came out in a wheel chair.  That's not what you want to see when you're looking ahead at having MS.  You want to see a whole bunch of people with your disease that are doing great!  It's hard to imagine a wheel chair being a part of my future.  I felt out of place knowing that I had just come from three hours of fitness classes at my aerial studio.  First, we met with the physician's assistant.  She was very nice.  She got all of our information and did a whole bunch of strength and neurological tests on me.  I had to stand with my feet together and close my eyes.  I'm guessing they were testing my balance.  Then I had to resist when they would pull on my arms or legs.  They were trying to determine if my strength was even on both sides.

We waited a long time for Dr. Foley to come in.  It's never fun to wait for doctors but it's nice to know that when you get your turn, the doctor is going to take his time with you and answer all of your questions.  One of the first things Dr. Foley said was that this is a very unusual case.  He said it several times throughout our appointment, shaking his head, "Such an unusual case!"  I had made a list of questions to ask Dr. Foley about MS and MS treatments.  Well, I never got to ask those questions because, guess what?!  He says that we can't determine if it really is MS at this point!  He says that it could be Acute Disseminated Encephalomyelitis.  Say that five times fast!  The definition of ADEM from google is: Acute disseminated encephalomyelitis is a rare autoimmune disease marked by widespread attack of inflammation in the brain and spinal cord. ADEM typically damages myelin, causing destruction of white matter. It is often triggered following a viral infection or vaccination.  I mentioned that I had been looking into this possibility in one of my previous posts.  This is initially what made the most sense to me.  It's a one time infection that often occurs after a vaccination.  I told the doctor that I received a flu vaccine 18 days before symptoms occurred.  He said that is exactly right on time for ADEM occurring. We still can't know what it is for sure because clinically ADEM and MS are indistinguishable at first.  It will take more time to see if I develop more lesions or have more symptoms to know for sure.  I have an MRI scheduled in two months that is a 3T magnet MRI scan.  It is a lot more powerful than the MRIs I've already had.  It should give a clear picture of any lesions that may exist in my brain.  Hopefully, it won't detect a whole bunch more lesions.  That would burst my bubble.  

I know I shouldn't get my hopes up because it could still be MS, but this just feels like a replay of the whole Huntsman experience.  When they said maybe it's not cancer, and it wasn't!  That was the best!  It would be asking a lot to expect things to get easier again.  It's funny because at the beginning of all of this, Joe and I said we wanted to stop going to appointments because the news always got worse.  You have a tumor...it's cancerous grade 2...it's cancer grade 3.  But now it just keeps getting better and better.  It's not cancer... it's MS....maybe it's just a one time thing and will go away and never bother you again!

I mentioned before that I thought I was quite the escape artist, but now I'm starting to think that I just have straight up magical powers!  Sometimes I hear owls in my yard.  Maybe they're trying to deliver my acceptance letter to Hogwarts.

So, to be clear, Dr. Foley said it was too early to tell, but he is leaning toward thinking this is ADEM caused by flu vaccination.  He said not to get any more flu shots.  Apparently, it's not necessarily that the flu shot is dangerous for everyone, but for people who are predisposed to auto immune conditions.  But you never know if that's you or not.  I'm definitely done with flu shots.  I need to contact the company that made my flu shot and let them know what happened.  There is a fund that the vaccine company has to pay all of the people that experience side effects from their vaccines.  I'm not sure how I feel about that.  I don't love the idea of suing people.  I don't really know if it's their fault or not.  Sometimes companies like that are careless and they take unnecessary risks with people's lives in order to make money.  But I don't like to pass blame and I also view this experience overall as a positive one.  It has been challenging and quite a struggle but a lot of good has come of it also.  If I was paralyzed from surgery, I would be suing everyone I could, but so far, the outcome has been good and I don't want to be a gold digger.  It wouldn't hurt for them to cover my medical expenses and maybe a little extra for hair damages and cosmetic pain and suffering  ;) What do you think?

After I have my super charged MRI I will have a follow-up appointment with Dr. Foley to reassess the results.  That appointment is on May 27th.  We still may not know for sure at that time.  I want to thank everyone for their continued prayers in our behalf and clarify that I don't really attribute these miraculous circumstances to my magical powers.  I am so grateful to God for watching over me and my family and for occasionally answering our prayers just the way we want them.

Mia was just asking why all prayers aren't answered the way ours have been lately.  We talked about how this life wouldn't be a test and wouldn't stretch and grow our character if every time we had a problem, it was instantly solved as if we had a genie in a lamp.  I pointed out that she and her brother and sister have been fasting and praying for me to get pregnant for about four years to no avail.  Some things are God's will and some things aren't.  But it's all for the best and for our good. 

Speaking of infertility, my sister Maren and her husband Nate have decided to try to adopt a baby and would like to get the word out in case anyone knows of any birth mothers in that situation.  Keep them in mind.  Thanks!

Ticking Time Bomb & The New, Old Lesion

I had another MRI on Monday.  I'm getting better at getting MRI's.  I held almost completely still the entire time!  And the injection of contrast was less painful than usual.  I was scheduled to have an appointment with Dr. Foley who comes highly recommended as an MS specialist the next day.  I have been waiting for this appointment for two months.  I was actually counting down the days until my appointment with him right before his office called and said they had made a mistake scheduling my appointment and that he wouldn't actually be in the office that day.  So they needed to reschedule me for three weeks later!  The reason I was so anxious was because I feel like my disease is so ambiguous.  I've been feeling like I've been wandering aimlessly for a little while with no clear direction.  Because if I really do have MS, it's certainly not a classic case.  I need someone with a lot of experience to tell me that they've seen this before and that they are confident they know what it is and definitively rule out other possibilities. Maybe that's an unrealistic expectation, but it sure would be nice.  I'm also willing to just go on not knowing, because I've felt through this whole ordeal that not knowing=not having anything serious.  I would much prefer to not have answers because there's not enough evidence to support any specific disease.  But, of course, if there is evidence to support a disease, it's best to know about it.  I really need some guidance from a doctor, but they are so unbelievably hard to get into!

So I had my MRI, but no way to actually find out the results.  I had my appointment with Dr. Foley scheduled now for April 9th and a follow-up with the first neurologist I saw who is good, but not a MS specialist, scheduled for April 17th.  That's too long to wait to know the results of my scan.  My dad is a doctor who was working for Intermountain until he came down with a debilitating auto-immune disease called sarcoidosis.  He hasn't been able to work for several years but still makes himself very useful as our personal family 24/7 doctor.  I guess you could say he's a little like Baymax, but he doesn't fly.  Next time someone asks me who my personal care physician is, I can't wait to reply, "Baymax," with a completely straight face.  That would be so awesome.  Anyway, the whole point in telling you all of this is to explain why my dad has access to the Intermountain online system and was able to obtain my MRI results.  I have filled out all of the paper work to give him permission to access my records and obtain all of my medical information.  He's compiling a binder for me of all of my medical reports in chronological order.  If you knew his personality, this would make you laugh.  He's so formal that way.  His doctorness totally spills into all aspects of his life.  I remember when I was a teenager and he took a phone message for me when I wasn't home.  It literally said, on a post-it note, "Unidentified female called for Lauren at 14:00 hours"  He always uses military time, haha, he's so funny!  He does so much research for me, he'll be able to have his own neurology practice in a few years!

Realizing it would be ages until I would get the results of my MRI, I called my dad and asked him to look it up for me.  I was not expecting the news I got. He told me that there was a NEW lesion!  I mentioned previously that I had another speech slurring episode, so I had considered the possibility of a new lesion, but I thought it was more likely related to the fact that I had gone off of my steroid medication that had shrunk the lesion considerably.  I was expecting to have my lesion appear larger, but not to have any new ones!  I had already decided that, if I did have a new lesion, it would be really bad news.  We had been told that MS attacks typically occur every eighteen months to two years.  If I was having more attacks in the period of two months, I thought I would be crippled by the time I turn 40!  This shook me up a lot and made me feel like I was thrust back into "scary future" mode.

It's hard to describe being diagnosed with MS when you have no symptoms.  It feels kind of like someone telling you that you have a ticking time bomb in your body and they have no idea when it will explode or how big the explosion will be or how long it will take you to recover from the effects of the explosion, but they just know it will explode.  Ummmmm......okay, but I feel so normal right now!  How could there be a ticking time bomb inside my body?  Can't we get it out?  Nothing's even happened yet, is there really nothing we can do to stop it from exploding?!

The first lesion was originally 2 centimeters.  The good news is that it has gotten a lot smaller.  This is just another sign that it cannot be a cancerous tumor.  Cancer grows, it doesn't shrink on it's own.  The "new" lesion is 4 millimeters.  I didn't realize how much smaller that would look until I saw the MRI images.  It is tiny compared to the first lesion!  And it is located in the right frontal lobe.  I called Dr. Butrum's office yesterday to tell them I wanted to be seen right away to talk about the results and Dr. Butrum said he would see me at 8:40 this morning before their office even opens!  I thought that was very considerate of him.  He says that some people could have the right frontal lobe removed and not even notice it was gone.  So that's good!  Apparently, it's not the most crucial part of the brain.  He said some people see personality changes with damage to the right frontal lobe like loss of inhibition.  So, if I start dancing on the tables, it's the lesion dancing, not me!  The location is a really big deal because I understand that the severity of MS is not just how many lesions you have but the location of the lesions.  So far, I have none on my spine.  I want to keep it that way!  That's when you start to have symptoms like not being able to walk.  I thoroughly enjoy being able to walk and would like to maintain my ability to do so as long as possible.

I was originally wanting to delay treatment as long as possible because I'm so not interested in taking pharmaceutical drugs that always have awful side effects, but I had a conversation with my sister-in-law Jordan.  She had talked to her dad, who has MS.  He explained that you never know when you're going to get another attack or how severely it could disable you and that the medications they have can delay attacks and really cut down on the amount of permanent disability.  Because of this conversation, I decided to get into a doctor right away and start treatment.

The appearance of a new lesion makes the case stronger for MS, but Dr. Butrum says the new lesion is not a classic MS lesion.  He said you typically see them deeper in the brain and larger.  I also want to address the matter of this being called a "new" lesion.  Dr. Butrum showed me the latest MRI and my first MRI, taken in December, side by side and I am not kidding, there was a really faint dot in the exact same size, shape, and location on the first MRI that they are saying is a new lesion.  I pointed it out to my doctor and he said it could be the first sign of the lesion, but the radiologist determined that it was a new lesion.  Now, I know that I'm not trained in radiology, but it's going to be hard to convince me that what I saw on the MRI is not just a fainter version of what they are telling me is a new lesion.  I don't think it's new at all!  Not that it makes that much of a difference.  The significance of the other lesion is that it demonstrates "multiple scars" or multiple sclerosis.  Whether it's new or not doesn't make a big difference.  I was just worried that I was rapidly getting new lesions by the month.  I talked to the doctor about the relation between lesions and attacks and he said that just because you have a new lesion doesn't mean that you've had an attack, but when you have an attack you typically have a new lesion to go along with it.  I also asked him if this meant that I have an aggressive form of MS.  That is what shook me up about finding out about the new lesion. I thought, "Oh great, I have a really aggressive form of MS that is going to cause rapid decline in health."  But the doctor didn't agree.  He said that in aggressive MS, patients show up their first time with 10 lesions on their brain.  He said, this isn't aggressive.  That is such a relief!  It's just a little bomb. :)

He doesn't think that my worsening in speech slurring is related to the new lesion.  He says I should expect it to take 6 months to a year to see improvement in my speech and I might have fluctuations in severity along the way.  We can't really determine the age of the first lesion, either.  The only sign we have of its age is that MS lesions usually enhance with contrast for about three months and then no longer enhance.  So, the fact that my lesion was enhancing means that it was most likely formed within three months of when I had the first MRI in December.

I've decided to start treatment.  It doesn't sound like patients have a lot of side effects from the available medications.  I'm going to start one called Tecfidera that will be a pill I take twice a day.  I'm so glad it's not an injection!  Some of them are!  I still plan to get Dr. Foley's opinion, but I wanted to get the ball rolling since it can take a couple of weeks to get the medication approved and sent in the mail.  It's not something you can pick up at Walmart, apparently.

Thank you everyone for your continued prayers and concern.  Aside from a brief scare yesterday, we are doing really well and life has been really normal.  We have notified Dr. Reichman about how long we have been waiting to hear from Stanford and he is looking into the delay for us.  With all of the other evidence, I think the worst thing they could say is that it looks like MS and the best thing they could say is that it was just a smudge on the film and there was never anything there afterall, but I'm not going to count on that!

Control Freak

Holy cow, I am so sorry, everyone!  I was posting and posting all of my drama and then I just dropped off the face of the blog earth!  Well, the reason why is because there is absolutely nothing going on right now.  No doctor's appointments, no results, no news, but I knew that I needed to post because I know some of you are feeling like there's stuff going on and I'm just not letting you know.  Trust me, if I have news I will share it with you.  There's just not much to share right now.  We still have not heard anything from Stanford and still have no idea when we should be expecting to hear.  We're not terribly concerned about that anyway.  I guess it could be huge, but I'm expecting it to be the same news we heard from Huntsman.  The next big thing is getting to see Dr. Foley in Salt Lake.  Several doctors have told me that he is one of the "premier MS doctors in Utah."  He is a neurologist that specializes in just MS.  So he is really knowledgeable and experienced.  I am basically planning to put all my trust in what he says.  My appointment is on the 18th of this month.  I'm still not totally 100% sure that I have MS.  But I figure that this guy sees it so much that he will be able to recognize it for what it is.  I figure that either he'll say, "No way you have MS, this looks nothing like MS."  or he'll say, "Yes, I've seen cases like this before with very few symptoms that develop more later on."  So I feel like he will be able to give me an idea of the path I should be on.  Right now I'm on the "I have MS path" but sometimes as I'm researching, reading, making my supplement plan, etc, I wonder "Wait a minute, do I even have this?"  If this doctor thinks I do, I will believe it for sure, at least I think I will.

 I guess I've developed a little bit of an "invincible complex."  I'm totally convinced that I will overcome everything and always be the one to beat the odds.  Even before I Houdini'd my way out of a death sentence, I already knew I was not going to be "the average person that lives x number of years" I knew that I would be the exception to the rule.  It's not because I thought I was better or more deserving than anyone else, I just knew that the average person isn't willing to work as hard as I am and the average person doesn't have the gift of the Holy Ghost to guide them, and the average person doesn't have as much vision of what they want their future to look like.  I have a clear picture in my head of what I am going to accomplish in my life and, other than God, no one and no challenge is going to stop me from achieving my goals.  If God says it's the end, it's the end.  But, if He doesn't, then I know how to make a plan and follow it and fight for change!  I've never been one to just sit around and be unhappy with my situation.  Someday, after I die, people will probably go through all of my stuff and find all of my journals and notebooks.  When they do, more than anything else, they will find plans.  Plans I made of how to change my circumstances.  When I write in my journal it is usually because I'm making a plan.  My plans range from how I'm going to keep my house clean to how I'm going to become flexible enough to do the splits to how I'm going to stop losing my temper with my kids.  One of the best skills I've ever learned is how to ask myself questions.  When I have a problem, let's say it's being too stressed out, I ask myself the question, "How can I feel less stressed out?" "What can I do to feel less stressed out?"  And then I write down every idea I can think of.  It's amazing how this works!  Once you ask yourself a question, your subconscious mind tries to find an answer even when you aren't thinking about it.  Just like when you can't think of someone's name and then, later on, it suddenly pops into your head out of nowhere.  That's because all the time, your subconscious was searching for an answer.  That's why I ask questions.  There's always an answer, even for things that seem out of our control.  There's almost always SOMETHING I can do to make the situation better.  I guess I'm a control freak.  I like to be able to do something about my problems.  That's why I hate situations that aren't my fault.  I hate it when I hear people say things like, "Your depression is not your fault, your weight problem is not your fault."  Don't tell me that!  That means I can't do anything about it!  And sometimes, that is the case.  But most of the time I CAN do something about it and so I do.  This attitude is one of the reasons why I believe in my chances at overcoming challenges.  I think Heavenly Father is probably mostly pleased with this attitude of self-improvement but also probably wants to show me that He is in control and I'm not, even though I obviously want to be. I am frustrated by things I can't change, but, when it comes down to it, I know that it's much better for Him to be in control. He has way more wisdom and perspective than I do!

Life is almost completely back to normal.  The only thing that has changed is all of the time I spend researching, which is probably why I haven't found time to blog.  And, of course, my hair is not at all back to normal!  I realize that I should be so grateful that I didn't have it all shaved off and that I'm not losing it to chemo and that I'm not dying and I AM grateful, but, if I'm totally honest, I have to admit that it still bugs me.  I totally hate having to wear hats and headbands all the time, but when I don't, I feel like people are going to think that I have the strangest punk haircut ever!  If everyone that saw me knew that I had surgery, it wouldn't bother me at all, but they don't.  Maybe I should make a t-shirt.  I know I shouldn't care about what people think, but honestly, we all do a little bit, right?  We want to portray ourselves a certain way and have people get who we are and what we represent.  Going without a head covering is so unattractive, but wearing one is so uncomfortable.  Do you see my dilemma?  I would be freaking out so much right now if I had NO hair.  That is one thing I do not deal with well at all.  (It's one of those things out of my control that I hate).  My kids just want me to go without hats.  I have started going to my workouts without anything and I've been to the mall once and the grocery store once without anything on my head.  I guess I'm just easing my way into it.  The biggest problem is going to the temple!  That seems so ridiculous because it seems like that's the best place to go to feel loved and accepted, but I cannot bear feeling like people might think I purposely cut my hair like this! And I can't wear a hat!  I like my wig, but I can't stand how uncomfortable it is.  Right now, I'm working on a hair piece that is a clip in bang/top wig.  It just covers the very top of my head.  If I can get it the right color and cut it the right way, it could work really well, but I just cannot wait until I have long hair again!

Wow, I just love how I can switch gears so easily between the deep and the petty!  That takes talent! :)  The only other thing that I haven't mentioned is that I had another speech slurring episode.  It was the Thursday before Valentine's day.  Joe and I went out to celebrate that night to avoid the crowds.  I was stumbling over my words again and Joe said it was really noticeable.  It had been getting so much better so I didn't understand why it was getting worse again.  Since then it has started to improve again.  So now I'm left wondering, was that another MS attack?  or did it have something to do with the steroid I had been taking since surgery.  The steroid made the brain lesion shrink a lot.  When I stopped taking it, did the lesion get bigger again causing pressure on the speech portion of my brain?  I don't know, just don't judge if I stutter or stumble when I'm talking to you. :)

Well, that's all, my lovelies!  I will write again when I've seen Dr. Foley or I've heard from Stanford, unless I think of something profound or petty to say before then.  Mwah!

My Share of Diseases

When I first received the multiple sclerosis diagnosis, I was having a really hard time feeling convinced that that was really it.  It's just so hard to believe you have a degenerative disease when you are functioning at 100%.  I was convinced that it was a condition called ADEM or Acute Disseminated Encephalomyelitis which is basically the condition that is the "virus theory" we were all hoping for.  When I read about this condition, it said that it could be caused by a virus or immunization.  I received a flu vaccine 18 days before I noticed the slurred speech, which is within the window of how long it takes for ADEM to occur.  I thought, "Surely, I would have more symptoms than this if I had MS!"  I wrote to my doctor and asked him about this possibility.  He said that actually MS can also be triggered by vaccines.  He said it is possible that I could have a mild case of ADEM (usually people with this condition have very severe symptoms and sometimes coma) but it goes away completely.  But there is no way to distinguish between the two diseases other than to wait and see if it comes back.  Then I googled asymptomatic multiple sclerosis and learned that there are some people that have no symptoms at all but find out they have MS through MRI's they had for other reasons.  These people typically develop symptoms within 5 years.  So once I read that, I started believing that maybe I really do have it.  It's probably just another blessing that I have discovered it so early on so that I can start applying dietary changes and supplementation that could help me avoid degeneration.  Because, of course, I will!  We all know what an escape artist I am! ;)

I had another MRI on Thursday.  This one was of my neck and cervical spine.  It was the worst one yet by far!  It lasted about an hour and a half! Such a long time for a fidgeter like me!  It was a constant struggle between wanting to follow the rules and not get scolded by the MRI tech and desperately wanting to shift my position a little to get comfortable. 

They did this MRI to see if there were any more MS lesions on my spine that would make diagnosis more clear.  There weren't any, which is what they expected, but they did find arthritis in my spine.  More arthritis than my doctor said he would expect to see in someone my age.  Well, that wasn't a huge shocker because I have had pretty bad back pain for the last two years or so and suspected it could be arthritis since it seemed to get worse in cold weather.  So now I have spinal osteoarthritis and multiple sclerosis!  How many degenerative diseases does one girl need?!  I think I'm going to call a truce with my doctors and tell them to keep any future diagnoses to themselves.  You know, a don't ask, don't tell policy.  I think I've had my share, thank you!  These conditions aren't great, but, don't worry, I haven't forgotten how blessed I am to not have cancer.  At least I HOPE I'm not going to get news back from Stanford saying, actually you DO have cancer!  That's the worst thing I could imagine right now.  Ever since we heard it wasn't, we've been partying like it's 1999, and going back to cancer again would be so devastating.  But, the good news is, if the spinal fluid results confirm the MS suspicion that the doctors at Huntsman had, then that pretty much seals the deal, right?  If it's MS, it can't be cancer!

Thank you to all those who heeded the call to pray for me to have MS!  It worked!  And what a blessing it is!  I am finally off of my horrid steroid medication that I had to take after surgery.  I'm hoping the puffiness in my face will quickly subside now that I'm off of it.  I also got to go back to my workout studio.  I did my first strength workout on Thursday.  It felt so good to do something challenging and strengthening like that!  I went again on Saturday and now I am enjoying the feeling of sore muscles.  I'm really pleased that, though I've definitely lost strength, it didn't feel like it was the first time I'd ever worked out, which it sometimes can after a break.

My mind is totally flooded with information right now.  I'm reading and researching all day long. And now, I have to add arthritis onto the list of conditions to heal.  In addition to the recent stuff that has been going on, I have been dealing with some kind of hormonal condition for about seven years, ever since Elyse was born.  I have not been able to get pregnant ever since then and I also have been unable to lose any weight under any circumstances.  When this whole thing started, I was hoping that it was all connected somehow so that we could treat it all at once, but my doctors don't seem to think there's any relation.  My Dad doctor, however, thinks that it is highly likely that it could be related considering that my brain lesion is very near to the pituitary gland and hypothalamus which are responsible for fertility and metabolism.  I may never know for sure, I just wish I didn't have to research 75 different conditions in the search to heal whatever the heck is going on with my body.  I'm 35 years old!  Why am I breaking down?!  And to those of you who are wondering, yes, I have been down the roads of thyroid, bioidentical hormones, and PCOS.  Still no answers.

I'm confident that I will find the answers and solutions I need.  That will be my new journey.  So glad I'm not starting my third week of chemo/radiation right now and that my hair is starting to grow back instead of starting to fall out!  I have a whole half an inch right now!

I have, however, just realized that this huge scar down the middle of my head is always going to show and mess with my hairline and fringe even when my hair grows back.  And I'm also getting sick of wearing hats.  If you think it's hard to find a flattering outfit to wear every morning, try finding the outfit AND a hat that matches it!  Small price, I know.

My speech is so much better now!  And I feel like I've gotten most of my expressiveness back.  That's good news, because that made me feel really awkward.  I still have to concentrate a little when I sing to hit the notes.  I expect to be completely back to my old self by the first of March.  That's amazing considering that I could be relearning to walk and feed myself right now.

When Joseph was younger, he wasn't progressing with reading as quickly as I wanted him to.  It wasn't until I started having him read aloud from the scriptures every day that he finally got it and took off with reading.  Because of this experience, I started Elyse right away reading out of the scriptures and she has been the quickest of all my children to learn to read fluently.  And you can tell from the picture above that she loves the scriptures, too :)  When I was having trouble speaking, I thought about this and thought, "The answer is to read the scriptures aloud."  There is so much power in the scriptures.  There isn't a problem that can't be improved by reading the scriptures. President Ezra Taft Benson once said, “It is not just that the Book of Mormon bears testimony of Christ, though it indeed does that, too. But there is something more. There is a power in the book which will begin to flow into your lives the moment you begin a serious study of the book."  I have found that to be true in my life.  I'll report back to let you know how my scripture reading "therapy" works out.  It's working great so far!  If I'm successful, they'll probably start implementing this therapy in all the major clinics. ;)

The Cool People's Club

Over the weekend, I noticed that I had several messages on my answering machine that I had not checked.  One was from the neurologist's office that we had an appointment with in APRIL saying that they had a cancellation for Monday (today)!  Of course, I got the message over the weekend when it was too late to call and snag that appointment, but Joe worked his magic and managed to get me that appointment somehow.  He has the "I'm not afraid to be an obnoxious patient and ask for favors" gene that I don't have.  He gets a lot more done than I do because of that.  He talked to the after hours nurse and got her to send a message to the scheduling receptionist to call us first thing in the morning to set up the appointment.  I was waiting until the office opened to call and see if I could set up the appintment, but an hour before they even opened, Joe called and told me he had made an appointment for 11:00 am.  He left work to come to the appointment with me.  That is a relief, because it is so hard to hear all of the medical language the doctors use and remember it accurately without somebody to back you up.  He also thinks of questions I don't think to ask.  I'm so glad I have someone to go through this with.

I'm so happy to finally have had this appointment.  It felt like we would never hear the results of the lumbar puncture.  For some reason, neurologists are booked out  months in advance.  That makes no sense to me!  How do you have patients with all kinds of neurological conditions and not have available appointments for 2 months or more?!  That seems crazy to me.  It's sad that there are so many patients that need to see the neurologist.  I'm thinking of getting Joseph on the path to become a neurologist since they seem to be in such high demand.

Apparently, there is no one test that can conclusively determine if you have MS or if you do not have MS.  Based on my spinal fluid test results, the neurologist said that two out of three markers point in the direction of MS and, for now, he is going to assume that I do have MS.  However, since I feel so healthy and have so few symptoms, he does not want to start any treatment for the time being. 

Ever since we have received the "it's not cancer" news, I have not even been thinking very much about what I actually do have.  I've just been thinking that I feel so healthy and that I must not really have anything wrong with me.  I thought it would be a big adjustment to find out that there actually is something wrong. But after the doctor said he thought it was MS, I didn't feel a whole lot.  After you think you're going to die without raising your children, it takes a lot to shake you, I guess.  Emotionally, I feel hopeful about this diagnosis.  But, at this point, I'm really uneducated about it and I really haven't had any real symptoms.  Actually, I'm not even totally convinced that I do have it!  I still think it's possible that I'll never have any more symptoms or attacks and we'll look back and wonder what this whole thing was about!  That would be nice.

Recently, David and Valerie Osmond have moved into our ward and we've started getting to know them.  They are such a sweet couple!  David has MS.  We spoke to him about it a little at church the other day and he is going to be such a great resource!  He has all the info and all the connections!  Once again, the Lord is watching out for us and making sure we get the best of everything.  David said that finding out it was MS would almost be good news because the treatments these days are so good and people lead such normal lives.  Plus, he said I could be in the "cool people's club" with him!  Honestly, I would have rather been in the "disease free club"  but the "cool people's MS club" sounds a lot better than the "terminal cancer club!"  So no complaints here!

We asked the doctor about other possible diseases.  I've been looking up demyelinating diseases and scaring myself ever since we got the pathology results.  But, apparently, MS is one of the few demyelinating diseases that shows up as lesions on the brain.  So it's definitely not ALS!  That is the best news of all!  When we were speaking to David Osmond, he mentioned that he had lesions all over his brain and spine.  That made me think that they had never done an MRI of anything but my brain and one of the signs of "multiple" sclerosis is "multiple" lesions.  I asked the doctor about that and he said the next step is to get an MRI of my neck and spine to check for more lesions.  That will be this coming Thursday.  He doesn't suspect that there will be any more lesions because lesions of the spine usually produce a lot of symptoms and I have virtually none.  Then, in a month and a half, I will have a follow up brain MRI to see if the lesion has reduced.  If it has that will indicate MS.  MS lesions usually flare up and then resolve, leaving behind permanent scars.

Looks like there is still a long road ahead of me, with "long" being the operative word.  Yay! Long!  I love that word.  A long road is fine if it means a long life, a long time with my kids, and let's not forget, long hair!  Whatever twists and turns there are on this long road, I'm certain there will continue to be miracles around every corner!