Eight Month Anniversary

I completely forgot to write my eight month anniversary post!  I have been too busy enjoying the summer weather and all of the extra time I get to spend with Patrick and the girls.

My eye has remained the same.  It still continues to be off center towards my nose.  I have a 15 strength prism, but I have not tried it yet.  I think I could get by with it, but I do not want to stress my eyes.  My ophthalmologist is always first to tell me that it is important to use a prism that lets my eye see without strain so that I do not get other side effects, like headaches.  Since I am outside so much now, and more tired as a result, I just do not feel like it would be a smart move to switch it at this point.  My 20 strength is serving me well for now.  I go back to Iowa City on August, 8.   

Fine motor functioning in my left hand has greatly improved.  Although my hand is still very stiff, I can type just about as fast as I always used to.  The only thing that I still find difficult and frustrating is putting on earrings and necklaces.  It is so hard for me to manipulate the clasp on the necklace and the earring backs.  I have never been a very patient person so I may or may not say a few cuss words when I have to put on jewelry.

My balance is pretty much completely back to normal.  I have even worn heels!  I take it slow, but to be honest I always have.  I am a tennis shoe girl!  When I am doing plyos, I also take it a bit slower than what I can actually go.  I don't want my ego to get in the way of my safety.  

My left side stiffness and heaviness has improved.  I do not feel it as much in my normal everyday activities, but I really feel the difference when I exercise.  A month ago, I only dreamed of running, jumping, and doing plyos.  I can now jog laps, go over steps and hurdles, through ladders, and jump (I wouldn't want anyone measuring my vertical though).  I still feel like I am dragging my leg, but after it gets warmed up, it feels lighter, and lighter. 

My muscle strength and endurance have improved significantly already in the month that I have been exercising.  I have increased about five pounds in every lift without feeling any additional strain or fatigue to my body.  But, I do usually have to drop down in weight by the third set; I never had to do that before. 

I still struggle to control my left arm as it moves away from the center of my body.  Any fly or press exercise is very difficult for me.  I have to lift lighter weight because my arm just wobbles and I don't want to sacrifice form and hurt myself.  Plus, I am so focused on steadying my arm that I don't have room in my head to concentrate on lifting the weight too!

So, I am still seeing small improvements every month.  Slow and steady wins the race, right?



**If anyone is reading this that has had a stroke--if your doctor okays it, EXERCISE!  It helps bring things back so much!  You don't have to go crazy with it, but keep yourself moving and keep introducing new challenges.  You will be surprised at how quickly your body responds.

To Be Able Bodied Again

There have been many times when I am catching up with friends and they are talking about their lives when they say, "I am talking about......, and you have to worry about strokes and brain surgery.  It probably annoys you when people complain about the problems in their lives when you have been through all of that."

It doesn't bother me in the slightest.  The biggest reason why?  It makes me feel normal.  Like I am just like any other person.  Plus, just because I have had an experience that has changed the way I think and feel about things, doesn't mean that I am perfect.  I still get stressed, frustrated, and complain just as much as the next person.  Most of all, though, these people are my friends.  I want to listen to them and I want them to feel comfortable talking to me.

But, if I am being brutally honest, there is one thing that does drive me crazy; when people make excuses about exercise.

Exercise and staying active was a MAJOR part of my life.  It always has been.  When I had my stroke, I could barely walk, let alone run.  It has been so hard and so heartbreaking to be unable to run with my kids, play ball, or teach them how to ride a bike.

But, I am not a quitter.

The last eight months I have battled back to being able to jog, jump, and do plyos.  I have begun exercising again and it is like I am looking at a different person in the mirror.  I watch myself do the exercises and I look completely normal.  You can't even tell I ever had anything happen to me.  But inside it doesn't feel normal.  My left side feels like it weighs fifty pounds (this has improved from the 100 pounds it used to feel like a month ago).  I basically feel like I am dragging my leg along.  It is still difficult to control my left arm as it straightens or moves away from the center of my body.  My muscle strength is still about a 1/3 of what it used to be.  More than that though, is the shift in the way I talk to myself.  I always used to tell myself to pick it up, that I wasn't tired physically--I was just tired mentally, I can do anything for a minute, etc.  Now I tell myself to listen to my body, slow down, take a break, etc.

If I noticed my form was off, my brain would send that message and my body would correct itself without a second thought.  That's not the case anymore.  I literally have to think about how to grip the dumb bell/band, focus on centering my weight on both legs when I squat, pushing my left big toe in to the floor when I move so that I don't roll my ankle, and keeping my left arm still and in control as I move it away from my center.  I can't just tell my body to do something and have it respond.  It doesn't listen anymore.

I also feel the muscle fatigue immediately in a workout.  I will never forget completing a leg day circuit that had 3, 1 minute bag sits as part of the burnout.  I would stand up from those and not be able to feel my legs.  Not like a, "wow, that was hard, my legs are gassed," but a, "holy shit, I can't feel my legs.  They literally feel like stone."  Don't even get me started about after a workout.  After a hard leg day, I would normally be sore for about 2-3 days afterward.  Now, it is more like 5-7 days.  My body just doesn't recover the way it used to.

Now just take a minute to let all of that sink in. 

It is so challenging for me to exercise, BUT I STILL DO IT.

Can you imagine telling your body to do something and have it not respond?  Not like a, "try this new exercise and you can't for whatever reason", but a "grip a weight and make sure all five fingers curl around it," and then watch your fingers remain uncurled.

I took my body and my physical capabilities for granted.  I have had many hardships to overcome.  But being unable to do the things I used to be physically able to do, and trying to accept that, has been incredibly difficult.

I watch Patrick play with the girls, or watch my friends put up the big weight I used to, and I just break a little inside.  I envy them so much.

So, when people tell me they don't have time to exercise, or say the don't know where to start, or whatever other excuse they give; when they take their abled body for granted, it breaks my heart.  I would give nearly anything to have a body that listened and was able again.

I always knew that I had one body and I needed to take care of it.  But now I am living in the realization that it can be taken from you even if you take care of it.  Being fit saved me the night of my stroke, carried me through rehab, and is accelerating my recovery now.

I will never take it for granted again.  Please don't let yourself take yours for granted either.


  

Scott and Steph

People frequently ask me how I write the way I do; have you always been a writer?  How do you think of what to write?  My answer has always been, "No and I have no idea.  It just comes out!"

Until yesterday.

My new answer to the questions above:  The beauty in my life, especially the people in it, INSPIRE me to write.

Our friends, Scott and Stephanie, are two people that inspire me.  This weekend I was lucky enough to attend their wedding celebration.  It is obvious that they completely adore each other, but it is equally apparent that they cherish those around them.  I felt this way the entire weekend.  Scott and Steph included my "Do Better.  Be Better." motto in their ceremony program and speeches.  How can I even express in words how that made me feel?  Unbeknownst to them, they have given me the greatest gifts; encouragement, love, and validation.  I have never been to a wedding where the bride and groom make it a point to urge their guests to count their blessings, live with gracious hearts, find the positivity in every situation, and appreciate the kindness in everyone.  Many of you haven't met them, but I think you would agree that simple act speaks volumes about their character and morals.  How blessed are Patrick and I to have friends like that?

Steph: I promise to always remember to count my blessings, realize the beauty in my life, live positively, and extend kindness to others.  I will strive to do better and be better every single day.

Scott: You thanked everyone for the impact they had on both of you and expressed that you hoped to have that same impact on all of us someday.  I am sure that I will be the first of many to tell you that you have impacted us already.  You are an amazing friend and you will be an even better husband and father.

Thank you for including Patrick and I in your special day.  We were honored.  I cannot wait to watch your relationship grow even stronger.  I wish you many years of love, happiness, and blessings.  God bless you both!

Me, Patrick, Steph, and Scott

What is a Cavernoma Malformation?

A few weeks ago I had to go to Covenant for a doctors appointment.  A gentleman in his mid 50's was already on the elevator when I got on.  Right away he asked me if I was from Washington, IA.  Confused, I responded no.  He explained that he saw the W on my shirt and had gotten it confused with his home town.  I laughed and told him that the W stood for Wonder Woman.  He smiled big and I could tell he was about to make a joke out of it so I quickly blurted out that my good friend had gotten it for me as a gift after I had my stroke.  And just like that, the questions started flowing.  "You had a stroke?  I can't even tell.  What caused it?  How old are you?"  He even lifted up his sunglasses to get a better look at me.  I didn't want to be rude so I engaged in the conversation. I told him I was 32 and that I had the stroke in October when I was 15 weeks pregnant.  I explained that I had a cavernoma malformation in my brainstem that had bled; that it was something that I was born with.  He was amazed by my story and continued to compliment me on how well I looked.  He offered me prayers, which I always appreciate (the more I get, the better).  Then, to my surprise, he told me that his brother suffered a stroke two months earlier from an aneurysm and the entire family was incredibly worried about him.  We exchanged some more pleasantries and as we parted he shook my hand and thanked me for giving him hope for his brother.

Like I have said a million times before, God doesn't do anything by accident.  We were meant to ride that elevator together that day.  I gave him hope for his brother and he gave me the gift of encouragement.

Why did I tell you this story?  Because I have at least one of these types of conversations a week.  They don't always end like this one did, but they usually begin this way.  People are always shocked that I have had a stroke.  They always ask why.  I realized that I talk a lot about my CM and my condition, but have never really explained it.

So, let's go to med school.

I have a cavernoma malformation in the pons of my brainstem.  I shorten this to CM, others say CavMal.  So what is that?  Cavernous malformations are abnormally formed blood vessels that have the appearance of a small raspberry in the brain or spinal cord.  They may be hereditary or they may occur on their own.  CM's may leak blood, leading to bleeding in the brain.  Repeat hemorrhages may occur soon after the initial bleed (weeks) or later after the initial bleed (many months or years later), or repeat hemorrhages may never occur. 

My CM is located in the pons of my brainstem.  The pons is small; approximately 2.5 centimeters.  My bleed was 2 centimeters, so the blood from my stroke filled nearly the entire cavity of the pons.  Subsequently, it did a lot of damage!  The pons serves as a bridge between various parts of the nervous system and connects the upper and lower parts of the brain.


The twelve cranial nerves travel through the pons and connect information between the brain and the spine.  Each cranial nerve controls a different bodily function.  These include smell, breathing, vision, hearing, balance, eye movement/function, sensory and motor function, facial function and sensation, biting, chewing, and swallowing, reflexes, sense of temperature and pressure, heart rate control, taste, and muscle control.  My deficits included balance difficulties, slight hearing loss in my left ear, right side facial drooping, loss of sensation on my left side, and significant decreases in left side fine and gross motor functioning.  I was very lucky that my bleed did not effect my breathing, swallowing, or heart rate regulation.

My most substantial deficit has been in my right eye.  After my stroke I suffered from severe double vision and nystagmus (lack of eye movement).  Although my nystagmus is gone, I still have double vision and my eye remains slightly off center.  My bleed caused these deficits, but they are the last to resolve, and most likely permanent, because my CM sits mainly on the sixth cranial nerve.  The sixth nerve, or Abducens nerve, controls lateral eye movement and centering of the pupil.


CM's can be present anywhere in the brain.  Many people have more than one and some forms are genetic, or familial as they are called in the medical world.  I only have one CM and it has been determined that my form in not familial.  Some people have CM's and never know because they never bleed.  Others have CM's that bleed often.  Once a CM bleeds, it is considered "active."  Once it is active, it is often said that it is not IF it bleeds again, but WHEN it will bleed again.  Brainstem CM's are more active than CM's in any other area of the brain and more likely to bleed numerous times.  Obviously, my CM is now considered active.  Each subsequent bleed is usually larger than the last and presents more deficits to the individual.  They are exceptions to this, though.  AND, just because a bleed is worse, it does not mean that it can not be recovered from.

CM's located in the brainstem, like what I have, are the most rare.  Only 0.1%-0.5% of the general population have them.  They are also the most serious.  The brainstem is a small, compact area so CM's are very hard to resect without damaging healthy tissue.  Furthermore, the brainstem controls bodily functions so patients who undergo brainstem surgery can experience a wide range of symptoms.  Any deficit you can think of can happen.  The most common that people in my support group have experienced are difficulty breathing, unable to swallow, failure to control heartbeat, facial, eye, or body paralysis, confusion, and short term memory loss.  For this reason, many surgeons consider brainstem CM's inoperable.  However, in most cases, deficits resulting from surgery resolve over the course of time.  Any permanent deficits after surgery are usually from the bleeds prior to surgery.

So there is my condition defined in a nutshell.  Many people see how well I am doing and think that my hardship is over. Unfortunately, it's not.  My CM is still in my brainstem.  It could remain stagnant or it could bleed again at any time. If that were to happen, I would start all over.  Unless I have surgery to remove it, it will never be over. There will always be that constant worry of another re-bleed. I will always have that constant worry of what another re-bleed would do to me since the first one was so massive.  It is so frustrating to worry all the time.

I remember when the most frustrating part of my day was figuring out what I was going to make for supper.

A lot can change in seven months.

Returning to Exercise

I started exercising again at the end of May.  Granted, I am not in that NLXF room everyday, but I am at least moving again.  Wow, have I missed it.

I have quickly realized that I am going to need to train my leg how to run again.  My movement is jerky and it feels like I am just dragging it along because it is so heavy.  So, I am training it on the elliptical.  It mimics the movement of running, offers me support under my legs, and allows for me to hold on so I do not lose my balance.  It feels natural. I take it slow and wear my heart rate monitor. The best part: my stiffness actually feels a bit better when I finish.

I also strength train a little.  I have even started taking the NLXF classes that do not involve a lot of cardio.  To be in that room again is so uplifting and encouraging.  I have missed the atmosphere so much.  Being there makes me feel like my old self.  But it has been challenging.  It is difficult to hold the dumbbell because my wrist lacks sensation.  Also, much like my leg, my arm movement is jerky.  Anytime I extend my arm straight up, out, or forward I lose awareness of where it is at in relation to my body and it just shakes.  It feels like what you would feel like if you were fatigued and still tried to lift a heavy weight.  I found that using resistance bands works much better for me to focus on control and form.  I do not lift anything over 10 lbs.  I don't want to push myself too hard too fast.  The last thing I need right now is an injury because I let my ego get in the way.

Why am I so excited about being able to exercise?

1. I have always been a person that genuinely loves to exercise and just stay active.  I rarely sit and relax.  To have that taken away so abruptly and definitively was tough to swallow.  I felt like a major part of me was taken away.  I feel like I am getting a piece of me back.

2. The only "me" time I get is during a workout.  It is the only time where my priority is just to be "Jamie."  I shut my mind off, burn stress, and just enjoy it.  During that hour being me comes before being a wife, mother, and teacher.  A workout is the only hour of the day that happens.

3. The harder the workout, the more I loved it.  There is nothing more gratifying than achieving something you didn't think possible.  To complete a difficult task physically is one thing, but to complete it because you are mentally strong is another.

It has been an amazing feeling to return to exercise.  If I am being truthful, it has also been heartbreaking.  I always go to the gym during an NLXF class time.  So I always have to separate from Patrick and my friends when class starts.  I go to the other side, jump on the elliptical and listen to the NLXF class and daydream about being able to do it again.  Then, because I am insanely bored on the elliptical, I watch other people kill treadmill workouts and put up massive weight and I long to be able to do that again.

In the matter of an hour I probably say close to a hundred, "That used to be me's" or "I wish I could do that again's."  But, I am seven months out from a stroke, eight weeks post delivery, and I am exercising.  A very smart person told me once that progress is all that matters.

I should be saying THAT WILL BE ME AGAIN.

Meet Greg

In my Shine Your Light: Part Two blog post, I mention connecting with another individual that has the same condition as me.  I have been in frequent contact with him since because his story and recovery absolutely amaze and inspire me.  His faith is strong and unwavering and that is so admirable.  He found out about his condition and had brainstem surgery to remove it 18 days later.

Please meet Greg.  Greg is originally from Guttenberg, Iowa.  He was a RN at St. Luke's Hospital in Cedar Rapids, Iowa until moving to Phoenix for work in May 2013.  His symptoms started in August and he was diagnosed in September.  He was referred to Barrow, not knowing their reputation.  His neurosurgeon brought in Dr. Spetzler (not knowing him either) to perform his surgery. He Googled Spetzler and was in shock that he was miraculously placed in the best hands in the world.  Three weeks leading up to his surgery, his malformation grew from 2cm to 14cm.  He is7 months post surgery and has had a long road to rehabilitation.  After the surgery, Dr. Spetzler said that he could not have made it any more difficult and it was one of the worst surgeries he has ever done.  His bleed had stopped and started again before the surgery.

His wife began a blog to chronicle their journey; Greg vs The Braincloud.  Greg contributed the name.  He chose it because his wife loves the movie Joe Vs. the Volcano and he thought he could tell their families that he had a braincloud.  Him and his wife are brutally honest about their journey and write frequently about their faith. 

Below is Greg's story, written by him personally. 

The only thing in my medical history was a broken arm as a toddler and tonsils removed in my twenties. I was in pretty good health prior to this.  I moved to Arizona in May as a travel nurse and my wife and 2 kids moved in August.  Before they got here, I moved our things into our apartment and shortly after that, my symptoms began.  My right hand began to tingle, like it was asleep.  I have had tendonitis in the past and thought that was it.  Then it traveled to the rest of my arm.  Shortly after that, my right leg began to tingle.  As a nurse, I assessed that I was getting older, as a 35 year old, and pinched a nerve or herniated a disk in my back when I was moving our household items.  I went to a urgent care desiring muscle relaxers to help my back and went to a massage therapist who found lots of knots in my right shoulder and back.  

I was having ringing constantly in my right ear and numbness on the right side of my face and balance issues.  I would lose my balance if I turned too fast or get tired.  It was like the world took 2 seconds to catch up to me when I turned my head.  I was told I had to go to a neurologist to get any back relief.  I bit the bullet and saw one.  He said it was probably a pinched nerve but wanted a spine and brain MRI.  I went with the spine MRI and assumed it would show the issue there and no need for an $800 brain MRI.  An hour after the MRI, the neurologist called me and said I had a lesion at the base of my brain and needed the brain MRI, which showed the mass.  He threw out terms like cancer, MS, or gleoblastoma.  ALL KILLERS.  My wife, a physical therapy tech, and I have worked with patients like these and had enough knowledge to be freaked out.  After that, we were referred to an oncologist and neurosurgeon.  

We saw the oncologist first and they did not know if they could even biopsy the mass.  They told us 10 weeks of radiation/chemotherapy 5 times a week.  I knew I could not survive that. Then, the same afternoon, we went to Barrow.  We were lucky to get Spetzler.  He saw us and told us that I had a 90% survival rate and could take up to one year to fully recover.  He said I could wait a couple of months and have another MRI or do the surgery.  He said with my age and health, that he recommended the surgery route.  My MRI showed that the bleeding stopped and he told me I could bleed again but that if it did, I would never get back to my previous level of function.  I could start to get better but never get to original state of health and could get worse if bled a third time and progressively get worse in my level of function and never recover fully.  So, I took the surgery route.  He was very frank and said I may have to have a tracheotomy, be on a ventilator, have a feeding tube due to swallowing issues, and probably need physical rehabilitation.  Spetzler is a very confident doctor, as he should be, and every other doctor and therapist I worked with would say if Spetzler said I would recover fully, then it would happen.  They all know that what he recommends, you take as GOSPEL.  After seeing the results, I would do whatever he says.  It is scary but he is the BEST. 

My rehabilitation was at St. Joseph's Hospital in the neuro-rehabilitation unit.  They were all amazing there. From the housekeepers to the nurses and therapists.  After the surgery, my eyes were literally spinning in circles.  It was like I drank a bottle of vodka in 5 minutes.  I was puking anytime I opened my eyes.  It took 4 people to reposition me in bed.  I was off the ventilator immediately after surgery, calling for my wife.  Apparently I am a mean drunk off the anesthesia.  No tracheotomy needed and I was sipping ice chips the next day so no feeding tube and spent 4 days in ICU.  Spent from October 11-29th in the hospital.  The rehab was intense.  3 hours a day for 2 weeks. I started with a walker and that was difficult.  I had facial drooping on my left side and nerve pain and weakness on the whole right side of my body.  My left eye had nystagmus so I could not focus and had a patch and the eyelid would not close so I had to have it taped at night.  I had cognitive therapy because I had memory issues with short-term tasks, due to the surgery.  I difficulty in busy rooms trying to concentrate as well.  I had no other cognitive deficits.  My mind was intact, which was a fear of mine.  I have worked with lots of stroke patients and I did not want to burden my wife with that.  

The therapists there were great.  They are fully invested in the patient.  My 4 year old daughter was there every day with my wife at my therapy sessions and they would have my daughter participate in the exercises with me and even came to her birthday party last month.  We did aqua therapy in the pool, which helped with my balance because I would get dizzy and not getting my left eye to work with my right.  We did kitchen cooking and even walked to a coffee shop to go through real life situations because you know that doing something in the gym is way different than at a grocery store. 

I also spent 2 1/2 months in outpatient therapy.  When I left the hospital, I was walking with just a cane but it was awkward and slow-going.  It was a long road; it was difficult and slow.  It has been 7 months since my surgery and I am going back to work as a nurse on Monday.  I am driving a car with no adaptive equipment.  I still have ringing in my left ear but no permanent damage in either ear.  It should go away eventually.  If you looked me, you could not even tell I had any facial droop.  My left eyelid still won't close all the way and I tape it at night but I can almost fully close it if I consciously try to blink and no permanent eye damage.  I have nerve pain on my right side of my body and cannot feel hot or cold.  It only registers as pain.  I am on Neurontin, a nerve pain drug, but it fogs your brain and I would be drowsy most of the day so I would rather deal with the pain and have a sharp mind.  I hate running but I am running a 9 minute mile and getting some of my strength back.  I have not lost any dexterity in my right hand.  

It has been a slow process but I should not be around.  After the surgery, Dr. Spetzler said that I could not make it any more difficult and it was one of the worst surgeries he has ever done.  As I said, my malformation grew from 2cm to 14cm in 3 weeks.  My bleed had stopped and started again before the surgery.

I am so glad we got in touch and you (Jamie) are helping others.  At first, I felt very alone with things and didn't know much about my diagnosis which instilled a lot of fear and self-pity.  I hated my son's classmates watching me walk with a walker or pushed in a wheelchair for long distances in the mall after I was initially home because I had no stamina.  I felt my dreams were gone.  I thought I would never walk my daughter down the aisle or go hunting with my son or grow old with my wife.  I am struggling everyday, but I want to be honest in my journey.  I am worrisome until I get my MRI in October, thinking any new muscle twitch or headache is a new CM.  

I also know God put me here at this point in my journey to help others.  With my CM and how much it bled, I should not be alive, let alone making a full recovery.

Thank you for contacting me Greg.  I value all the advice you have given me and pray for your continued recovery,