I dread mornings.  I wake up with an upset stomach, a headache, and body that hurts so badly I can barely move.  Every morning.  It is a rare occasion that I stay in bed more than one minute after my alarm sounds.  Now, don’t get me wrong.  I always want to roll over, call in sick, and sleep the day away, because at least when I sleep I don’t hurt.  But the reality is the more quickly I get up and out of bed, the more quickly I feel I can function.

And here’s the point…

How many of us give in to these awful mornings?  How many of us lose resolve after a few of these miserable mornings?  How many of us choose to go back to sleep, just to escape the pain?  Isn’t the reality that such a choice is actually inhibiting our progress toward being well and pain-free?

Too many fibro folks choose to do what seems easy (roll over and go back to sleep), or even wise, and by doing so choose to feel a bit worse each day.  We take a sick day, take it easy, and skip our exercise.  And we create our own version of the reality that so many fibromyalgia and chronic pain stereotypes are based on.  We act lazy, we sleep all day, and we think no one understands.

I am not immune to such follies.  I too give in to my pain, far too often.  But since my trip to Arizona I have rededicated myself to doing what is truly best for my body… getting up, going out, and doing something.

I need to show what I can do.

I need to see myself succeed.

I need to feel my health improve.

And I firmly believe that by doing so, I can create and maintain a cycle of improvement.  I know I will face truly challenging days.  But I pray my future lows will be higher than mast highs.  Improvement is my goal.  May it be a goal we share.

So, please don’t give in the bad days.  And if you are stuck in a cycle of submitting to the mornings you think movement is an impossibility, strive for the little victories.  Set achievable goals, hold yourself accountable (to yourself, a goal, or a loved one), and tell me about your successes.  Please.  We can motivate each other.

Related posts:

1. I Read: Stepcase Lifehack or Fibromyalgia and (Chronic) Pain and Posture
2. Chronic Pain and Cortisone, Part 2
3. Fibromyalgia and Gauging Pain

As today goes on, and people continue to contact me for updates, I am remembering more about yesterday’s appointment. But first, a funny story:

Yesterday morning Sus and I got up and got ready for the day. We knew I had an appointment at 11 and were planning to leave at 10 to allow plenty of time for us to drive somewhere we’d never been, in a car we’d never driven, on roads we weren’t familiar with. At some point during the morning Lisa posed a question about some detail of my appointment for which I did not have an answer. I pulled out my paperwork only to realize I had my appointment time completely wrong! And, the paperwork I’d told Lisa I’d completed was blank. Totally blank.

Have I lost my mind and/or my memory?

In all seriousness, Lisa and Scott have been exceptionally generous and accommodating, even letting use Lisa’s Pathfinder. What a blessing.  I am comfortable here and sometimes find myself feeling like I’m on a very-calming vacation… and then I remember my medicine (and how I don’t feel “different”), and the dizzies that don’t go away, and the who knows how many more appointments I’ll have up in North Phoenix, and the gigantic medical bill I will inevitably face when I get home.

But mostly, I know I needed this.  I needed to make getting better well my #1 and only priority for a while.  At home I struggle with feeling guilty for letting people down, ignoring my responsibilities, and putting my health first.  Here, I feel like a patient who gets to stay at the perfect hotel.  Loved ones.  Puppies.  Perfect weather.  And citrus trees.

Speaking of puppies, today we fed them food.  It was a messy endeavor, but we loved it.  My mother-in-law sure takes good care of these babies.

Genevieve

Related posts:

1. Kate Update: January 4, Arizona, Mayo Clinic
2. Kate Update: January 5, Mayo Clinic, Day One
3. Kate Update: Please Forgive Me

Today was my first day at Mayo. It went well. I have an unusual doctor, with a “bedside” manner unlike anything I have experienced previously. Despite his odd behavior, my doctor seems to really know his stuff. He has me on a new five-part regimen which consists of drinking an inordinate amount of water (there’s a funny story here), consuming twice to three times the daily recommended amount of salt, a few specific types of exercise, and two new medications.

Tomorrow morning I will begin the first medication, Midodrine, which they want to raise my blood pressure. After four days on of this, I will begin a beta blocker to lower my heart rate (and my blood pressure, as I understand it). Dr. General Hospital says these medicines will make me “feel different in a week,” and when that happens I should call him so we can move onto step two.

He is waiting to look into the cyst until they see how many symptoms respond to these medications. If I don’t “feel different in a week or so” they will switch me to a neurologist, since the symptoms would most likely be more cyst-provoked than heart-provoked. (I really do not want this to happen.)  As to just what “feel different” means, I’m not sure. But he says I will know, because I likely haven’t felt that way… ever. Sounds wonderful. I am looking forward to it.

At this point, I must add to my personal notes.  I cannot remember relating the story of my cyst to my readers.  Long story short, I have had ongoing dizziness, depth perception issues, EXTREME migraines, tinnitus, loss of extremity control, and more.  Though they attribute most of these symptoms to my Postural Orthostatic Tachycardia Syndrome, they feared the incapacitating headaches were caused by something else.  They were right.  After an MRI they could a cyst in my brain.  Though these cysts are common, the size of mine is quite uncommon.

Now for the amusing and/or noteworthy highlights from yesterday…

In all seriousness, Mayo is an impressive, and humbling place. Everyone from the shuttle driver to the bathroom attendant were exceptionally kind and jovial. The buildings are lovely, the finishes are consistent with a high-end hotel. The exam rooms are setup like nice offices for the doctors… nice carpet, nice desks, and enormous windows. They have they typical medical contraptions in them, but they make you feel comfortable and they make the doctors seem even more professional. The view from the exam rooms is definitely not your everyday hospital view.

On the lighter side, my doctor, whom I refer to as Dr. General Hospital, wore very low V neck scrubs with plenty of chest hair sticking out the top. He thought himself wonderful, I surmise… and he asked questions like:

• “You do what for a living?!”
• “You seriously went to college to study construction?”
• “Why the hell do you live in Arkansas?”
• “Why were you born in Salt Lake?!”
• “What is your husband like?”

All unexpected, to say the least. He also asked if ever worked in the medical profession… like five times. Why?  Because we was totally convinced I have, at some point, had H1N1.  In fact, he said that’s likely what got be into this POTS relapse.

He kept telling me I was “funny” and had a dry sense of humor.  To be honest, it kinda creeped me out.  Necessary Sidenote: My mom and I, combined, were below the average age of the patients in the waiting room. I kid you not. I am sure he hasn’t seen a non-octogenarian (or septuagenarian or the like) in months. He must have found my relative “youth” (or immaturity) refreshing and/or amusing. I found him a bit bizarre.

He explained my health issues like this…

• “Your brain isn’t telling your blood pressure and heart rate to get along. It’s like your blood pressure and heart rate haven’t talked on the phone in a while. Maybe your cyst is cramping the style of the part of your brain that maintains the connection.”
• “Those headaches are your brain thinking it’s dying, but just for a second. It’s not getting oxygen when you stand, so it b@#&$!s at you for the rest of the day to remind you what you did to it. No medicine can fix that. The headaches will be the last symptom to go as we get this fixed.”
• “You don’t look crazy. Are you crazy? No, you can’t be crazy, you’re too funny. Are you crazy?”

And so on…

Anyway, I am getting answers to my questions. (Although I swear Dr. General Hospital only asked about my degree so as to use the sort of language he thought would make me comfortable. A bit misguided.) And I am optimistic his recommendations will help me feel “different,” in a good way.

Related posts:

1. Kate Update: January 4, Arizona, Mayo Clinic
2. Kate Update: January 6, Mayo Clinic, Medicine
3. Kate Update: Please Forgive Me

January 4, 2010

Tonight Mom and I flew to Phoenix, via Denver… an airport I love.  Loads of open space, lots of light, and plenty of room to sit, on my butt, along the people mover.  I ate a cheese pizza from Pizza Hut.  It was good, but I hate that I ate it.  So quickly, too.  Why?

There was some confusion regarding our seats, so we asked for an emergency exit row.  We got one, and ended up in the first economy row… you know the one with nothing but six feet of open space in front of you and endless opportunities to watch flight attendants stare back at you?  The one so close to the door that you notice the gap between the door and the wall of the aircraft and the girl next to you asks, “Does that look closed to you?!”

The plane was totally full, and because of the extra leg room we had to put our bags in the overhead bins.  I kept my DS, but spent much of the flight wondering why the flight attendants were so stressed, and watching the one with short hair complete her Sudoku puzzle.  She wasn’t much good… I could see obvious answers, and I was at least five feet away.  But that doesn’t matter.  We landed safely at PHX and here we are, at my in-laws.

My appointment is at 11:00 am tomorrow at the Mayo Clinic hospital on the north side of Phoenix.  Looks like it’ll be a half hour drive with minimal traffic.  I can’t decide how I feel about this trip… but I do know I am excited to spend more time with the puppies (My mother-in-law’s dog had a dozen puppies on December 16.)

Me and Notch, the puppy I want

With Thanksgiving, and both family Christmases I haven’t had much time to think about tomorrow… until tonight.  During the flight I let my mind wander.  I worry a bit about the details, which is stupid.  They always work out.  And I just kept thinking about all the people who have faith and are offering prayers on my behalf.  I am humbled by their concern and pray they are blessed for their kindness.  Although I know I shouldn’t, I am a bit uncomfortable with their attention.

For the past two months I have let down many people, yet none of them has made me feel badly for doing so.  In fact, they continue to serve and assist without being asked.  I know I would do the same in return, but I certainly do not feel deserving.  In fact, I am growing accustomed to the dizzies and the tinnitus and seeing starsand I am learning to compensate for the depth-perception issues.  Feeling dreadful is beginning to feel normal. (I think this frightens some of my loved ones.)

At church I work with the two and three year olds… lately I haven’t given them the attention they deserve.  I can barely pick them up for fear of falling with them in my arms.  They deserve a Kate with more energy and a consistent presence and I can’t wait to get feeling better and get back in the Nursery with them.

Our home is still decorated for Christmas.  I told Daniel not to worry about taking the decorations down while I am away.  To be honest, I am not sure if I said that because I am a control freak and want to organize them as we put them away, or because I am a sentimental fool and I can’t stand to miss a bit of Christmas… even the melancholy bits.  I’d guess a bit of both.

My grandparents are still visiting for Christmas.  We left them there with Dad and Daniel.  They will be fine, but I feel like a terrible host… because I don’t feel that poorly about leaving them there.  At this point, I feel so poorly everyday, that I’d give up time with just about anyone to feel better.  Good thing, I suppose, because that is essentially what I am doing… ditching everything for as long as needed.  I pray it proves worth the risk.

Now, with all these ramblings, I am off to bed.

Related posts:

1. Kate Update: January 5, Mayo Clinic, Day One
2. Kate Update: January 6, Mayo Clinic, Medicine
3. Kate Update: Please Forgive Me

So, yet again, I will post what feels possible. And what is most-honestly on the tip of my tongue, via my fingertips.

As I type, my breakfast sits uneaten, in my lap. There is much to be done, yet here I am… Finally typing to you and thoroughly caught up in dreaming of taking my sweetie to get lost together overseas.

I think I must think about my health issues far less often than those around me. I see little gained from dwelling on them. And, instead choose to dwell on living as normal a life as possible.

And planning for the future that is a current impossibility.

And running away.

Please join me.  Tell me about your favorite destination.  (The sort you go to to lose yourself find yourself.) What do you love?  Where do you stay?  What do you read?  I can’t wait to read your responses.

Related posts:

1. Kate Update: In Third Person
2. Kate Update: January 5, Mayo Clinic, Day One
3. Kate Update: Please Forgive Me

I know that you all understand me more than most.

I know I owe something to all the wonderful people who have had me in their prayers over the past three months.  I really do.  In fact, I think I will spend the entire month of February making up for ignoring them.

But for now all I can say is thank you.  I pray each night that you may be blessed for your selfless kindness and your countless prayers.

Please forgive me for January.

For those who may not know, I am in Arizona getting help for an ongoing heart issue and a cyst in my brain.  It’s not as bad as it sounds, but I sure am exhausted… physically and emotionally.  More details coming soon.

Related posts:

1. Kate Update: January 5, Mayo Clinic, Day One
2. Kate Update: January 4, Arizona, Mayo Clinic
3. Kate Update: In Third Person

She is enjoying the Christmas season immensely.

She is having a rough month.

She is smart enough to know the previous two statements can both be true.

She is fighting brain aches, and dizziness, and for control of her appendages.

She is waiting to go to Mayo.  (And is quite sad she didn’t get in today.)

She enjoyed her fourth anniversary with her sweetie, and his family.

She is ready to enjoy sleeping, but she had to reach out to you first.

She feels like she has nothing to write.

Like you’ve heard it all before.

Like she can’t explain how she feels or all that’s happened.

Like it’s not worth the energy to talk, type, or tell the truth.

Like it’s easier to “tell the truth in advance,” than it is to tell the truth.

Like, maybe, if she pretended to feel fine, she would.

Like, maybe, she owes you an apology for leaving you in the dark for so long.

(Please accept her sincere apology for said shortfall.)

Look for a non-third-person update soon.

Related posts:

1. Kate Update: January 4, Arizona, Mayo Clinic
2. Kate Update: What is Possible and Getting Lost
3. Kate Update: January 5, Mayo Clinic, Day One

It was just a little dizziness.  Or maybe I was just lightheaded.  But it wouldn’t go away.  Maybe it was my ear infection (I’ve had two this year, what’s with that?!), or the medication for the ear infection.  But after a week, I’d had enough.  My doctor was quick to recognize the symptoms… a virus he and the other doctor in the office had both had within the month.  But he was alarmed by my heart rate and concerned about my low blood pressure.

I slept for five minutes, then came the test.  It’s simple, isn’t it?  Blood pressure and pulse while lying down.  Blood pressure and pulse while sitting up.  Blood pressure and pulse while standing.  Not so simple when you collapse onto the nurse and can’t feel your limbs.  Not so simple when you’re blacking out and your ears are ringing.  Beyond not so simple… Nurse Jo called it dreadful.

I was apologetic.  I told her I thought I shouldn’t have come… that it’s just my POTS flaring up.  But now it was her turn to be alarmed.  She didn’t know I had POTS.  She put her hands on my shoulders, looked me in the eyes, and told me I was intelligent for coming.  Then she left me alone.

I fell asleep/passed out.  Can’t remember.  She pulled my doctor from another room and they whispered.  Then I was off to an EKG and to get blood drawn.  Poor phlebotomist.  I was blacking out before I got there.  But I did it.  Then I sat.  For an hour.  Waiting.  Finally I was given two prescriptions and told what I’m always told* when I leave a doctor’s office.  Mom and Juanita took me to lunch.  I don’t remember any of it.

Actually I do.  I remember the dead fish in the fish tank.  So strange… for such a nice restaurant.  I think I ruined the waitress’ day when I pointed it out.  But that has nothing to do with what I was talking about.

Back to the POTS.  And four days forward.

I was laying in bed trying to fall asleep, but my heart-beat was pounding so loud in my ears I couldn’t relax.  I’m pretty sure a foley artist was working on a horror movie… in my head.  I was nearly done with the antiviral medication, and the dizziness had only increased.  And now I had this pounding heart issue.  Definitely worth a call to Nurse Jo.  I should have been feeling better.

Nurse Jo wasn’t in the office yet.  I got up from my chair and began to pace the first-floor.  The operator was talking, but I don’t know what about.  My mouth was doing the constant-spit cycle that inevitabley comes before the “woof your cookies” cycle.  Not good.

“Ma’am.  I need to go.  I’m going to be ill.  I’m sorry.  So sorry.  I will call back.  Sure.  Yeah.  Sorry.  I need to go.”

Awful.  I felt awful.  And then I had to call back.  How embarrassing.

“Don’t feel bad.  Well, you already do.  But it’s okay.  That stunt got you to the top of the list.  She’ll call you as soon as she’s in.”

Four hours later I had an appointment for the next morning.  And 24 hours after that I had a very-concerned doctor, ringing ears, a powerful medication, hope, and a goal.  Finally.

Related posts:

1. Is it just me? My Life with Postural Orthostatic Tachycardia
2. Fibromyalgia and your Doctor’s Customer Service
3. Kate Update: January 5, Mayo Clinic, Day One

When I was six months old I began to throw up and continued to do so until I became non-responsive.  I was dehydrated.  They admitted me to the hospital and said I’d be out in 24 hours… when my heart rate came back down.  It never really did, so they released me from the hospital with a resting heart rate of 160bpm.  Doctors didn’t want my heart-rate to go above 200, so they told my parents to keep me “relatively calm.”  My mom worried when I cried, because my heart-rate increased.  Lucky for her, and much thanks to her answered prayers for my crying to stop, I became what they called a “self monitor.”

Sus says, “At times, as a toddler, you would be playing and then just lay down and fall asleep.”

1995

During gym class at school, in Wyoming in March, which is still very much winter, they take my class outside to run the mile.  I quickly realize, as I often do, that there is little to gain by hurrying… so I take my time.  I finish with bright red cheeks that don’t fade until long after school finishes for the day.

1996

It’s spring in Idaho Falls and my class is taken outside to run the mile.  As a competitive gymnast who spent enough time in the gym to call it a nearly-full-time job, I was annoyed.  I got plenty of exercise. And I knew that, for those who didn’t, this sort of stunt was not going to inspire them to begin to.  Anyway, I remembered every bit of the horror that was running the year before… so I took my time… again.  Only to end up red as a holly berry (note festive reference) and burning to the touch.  Generic grade school teacher expresses concern, and I swear up one side and down the other… this is, in fact, normal.  For me.  So, leave me alone.  Actually, no.  I didn’t say that.  I was a very respectful pupil.  I promise.

1997

It is again spring in Idaho Falls, but it is by no means warm.  My junior high gym instructors (Are they teachers? coaches?   babysitters?) take the class outside to run the beloved mile… around the track… in the frigid cold.  After one lap I remember… there is nothing to gain in running/freezing my face off… so I take my time… yet again.  I’m pretty sure I walked the rest of the way.  I think.  But all I really remember is seeing my breath and the frost on the goal posts and Ms. Schultz screaming for us to hurry. My heart was beating so hard I couldn’t hear her.

Life goes on.  We move to Arkansas.  I grow up.  And graduate from high school.

2003

I see stars when I get out of bed, stand up from a chair, or bend over.  I notice my heart rate seems to grow more powerful and/or more rapid when I see stars.  I grow short-of-breathe when my heart rate increases.  I lose energy when I grow short-of-breath.  I visit my family doctor, who after various tests diagnoses me with Postural Orthostatic Tachycardia Syndrome (POTS).  He gives me a few tips for reducing the chance of fainting, seeing stars, and tinnitus and that’s that.

Summer ends.  I return to school.  I learn stuff.  And meet my husband.

2005

I’m home for the summer.  A friend is living with us, on and off, I’m house-sitting for a few families, work has me traveling the country, and my POTS flares up.  Talk about inconvenient timing.  My doctor refers me to a cardiologist in the area and after another round of EKGs, echocardiograms, and blood tests, I am diagnosed with Supraventricular Tachycardia.  Basically, in construction terms (which I went to school to understand), he says I have two wires telling my heart when to beat.  And, normally the signal only goes through one, but every so often the signal starts going through both wires… and my heart beats nearly twice as often.  There’s a lot more to it, but you get the concept.  They determine that at my age (20, at the time), the risks of treatment far outweigh the benefits, and nothing is said (besides what I hear every time I go the doctor*) or done.

Summer ends.  I return to school.  Get engaged.  And get married at Christmas.

2007

It’s winter semester and I am preparing to graduate from college.  My husband is applying to graduate schools, I am looking for a job, and we have no idea where we will be living in six months.  I take a nasty fall down the stairs in our apartment and go into the doctor to discuss my concussion.  While I’m there, I ‘fess up.  My heart rate has been all over the map.  My POTS or SVT or whatevertheheck it is is interfering with my schooling and I’d really like to get my energy back.  Our family doctor out at school refers me to the hospital where they assign me a heart monitor, which I wear for over a month.  Lucky for me, the foremost doctor for repairing my cause of SVT works at the hospital just down the street from my university.  Unlucky for me, or lucky for me, it is again determined the risks of treatment (sticking something through a vein in my calf, up to my heart and burning the “extra wire”) outweigh the benefits.  It is also determined that’s a good thing… my symptoms are not as bad as they could be.

I graduate.  We go to Aunt Linda’s in Mexico.  Move to Arkansas.  And start working for a living…

2009

Later this week…

*Wondering what I hear every time I go to the doctor?  Guess.  Or tell me what YOU hear every time you go to the doctor.  My answer to follow in the coming days.

Related posts:

1. Is it just me? My Life with: Postural Orthostatic Tachycardia), Part 2
2. Kate Update: January 5, Mayo Clinic, Day One
3. Fibromyalgia and Leading a Full Life

Sometimes, I forget how everything can hurt.  Sometimes, I am surprised by how quickly the pain flares up.  Sometimes, I am pleasantly surprised by how quickly the pain fades away.  Today is not that day.

Today I woke up three hours early just because I couldn’t stand to stay horizontal another minute.  Today I remember how badly I can hurt.  Today I wonder how long this flare will last.  Today I’ll settle for NaNoWriMo and cozy blankets.

Tomorrow I will head back to work.  Tomorrow I want to feel well.  Tomorrow I will be glad I took it easy today.  Won’t I?

What do you do on painful days like today, to make sure your tomorrow is bearable?

Related posts:

1. Fibromyalgia, Mornings, and Pain: Don’t Give In
2. Chronic Pain and Cortisone, Part 2