So, to save Daniel and I further embarrassment (and money on wasted medicine),  I spent this evening revisiting my options, and ordered the momma-bear version of #4.

It’s a red  zippered pill case which includes seven vials that will fit in my pocket when I am at work or out to eat.  They come in a larger case that will keep track of my medication on lengthier trips.  I anticipate this will be the ideal, discreet solution and will prove worth the 1,000% increase in my initial investment.

In other news, I have a lot on my mind of late and I want to know your opinion on the subject.  Check back later this week to opine.

Related posts:

1. Pill Popping and Shopping
2. Pill Popping and Shopping… A Somewhat Related Find

It’s a mini medicine cabinet, stocked to cover all situations.  From headaches, to sleeplessness and paper cuts… with this little gem you’ll be good to go.

My love to all.  And please, be smart.

Image via Blue Ribbon General Store

Related posts:

1. Pill Popping and Shopping
2. Pill Popping and Shopping… Round 2 (because failure is not an option)

I admit, I’ve become one of those people.  Someone who must take her medicine, on a regular schedule, for an indefinite number of years, and yet so frequently forgets to take the medication that makes such a difference on her quality of life.

And for this I must pay… in two ways.

1.  By eating my words. I regularly nag my mother for neglecting to take what we call her “breathing meds.”  She is severely asthmatic and tends to only take her medicine on an as-needed basis, even though her doctors stress the importance of a consistent prevention routine.  I am, officially, a hypocrite in one more way.

2.  By spending money. I need to buy a portable pill case.  Something simple I can carry with me all the time.  Far too often I leave my purse in the car and don’t remember to take my medicine until we’re home from dinner.  By then it’s nearly 8:00 and the mandatory four hour wait between medicine and sleep has me up until the wee hours of the morning trying desperately to sit up and stay awake.

Most pill cases are fairly large and hideous, but I’m looking for  a portable option that reflects my taste and fits my lifestyle.  Although I have yet to place an order, I have narrowed down my options and learned something valuable in the process:

There is a fine line between an ammunition-shaped drug culture reference and a Tupperware party.  And that line is, apparently, a prescription pill fob.

Seriously?!  A stash pendant?

And, with that, I will drag my online shopping away from the shady fringe to a whole lot of stainless steel:

1.  Deluxe Pill Fob Necklace ($5-$10)

2.  Stainless Steel Key Ring Pill Box (about $4)

3.  Harry Koenig Round Pull Box (about $10)

4.  Vial Pill Case – 14 Day (about $40)

5.  Ezy Dose Deluxe Metal Pill Fob Key Chain ($5-$10) similar

6.  e-pill MedMemory Pill Carrier (about $40) not pictured

Which would you select?  Do you have a similar product?  Is there something else you recommend I look into?

Related posts:

1. Pill Popping and Shopping… Round 2 (because failure is not an option)
2. Pill Popping and Shopping… A Somewhat Related Find

My health is, by no means, perfect… but I am nonetheless astounded by the scope of my improvement.

As part of my Mayo-prescribed treatment plan I have:

1. increased my daily water intake to 4-7 liters of water
2. added salt to nearly everything I’ve eaten since my visit in January
3. incorporated cardio-centric exercise into my nearly-daily routine
4. taken my medicine, as directed, for five months

I continue to strive to improve my adherence to Dr. General Hospital’s advice, and am currently focusing on increasing the intensity and duration of my exercise, and taking my medicine more consistently and at a standard time.

Thank you for your encouragement and support.  I am grateful for your perspective and your advice.  We’re lucky folks, to have a the ability to network and find answers with the click of the mouse or touch of the screen (Anyone else excited for WWDC and Monday’s big announcement?).

Look for future posts about my progress, and tips that help me improve my quality of life, despite having a chronic pain condition.

Related posts:

1. Kate Update: January 5, Mayo Clinic, Day One
2. Kate Update: Medicine, Mayo, and My Doctor
3. Kate Update: January 4, Arizona, Mayo Clinic

So, when I am having a stressful day at work, and I turn away from my desk, stand up, and begin walking to the water fountain to refill what I lovingly refer to as my Ironman (bought it before the movie came out), you can imagine how I feel. My ears ring, my vision blurs, and I literally feel my heart pounding behind my eyes.

But after a minute I am back to normal.

And I thank my lucky stars for the family doctor who pushed me to go to Mayo, for Dr. General Hospital and the Mayo Clinic staff, and for family, friends, and coworkers who helped me when I felt awful all day, every day.

And some days, like today, I get to actually thank those people in person.

This evening, while at a sweet and hilarious dance recital, I ran into my family doctor of over a decade (the one who retired while I was away at Mayo). He is a wonderful man and my heart was happy to see him, to be able to say I feel wonderful, and to thank him. Because of his advice, my husband (and others who met me after I turned 12) are amazed at my energy, activity level, and organization. They’ve never known me to be like this, and are getting to know who I am, all over again.

I continue to be overwhelmed by the significance of this improvement in my health. And I will gladly deal accept the aforementioned “touch of the dizzies” as a daily (or so) reminder of what my life would be like without medicine, Mayo, and my doctor.

Related posts:

1. Kate Update: January 5, Mayo Clinic, Day One
2. Kate Update: January 6, Mayo Clinic, Medicine
3. Kate Update: Five Months since Mayo Clinic

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: Five Months since Mayo Clinic

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 6, Mayo Clinic, Medicine
2. Kate Update: January 5, Mayo Clinic, Day One
3. Kate Update: Five Months since Mayo Clinic

It started in our master bathroom and spread to our master bedroom and then to our closet.  I removed unnecessary items from the shower as well as the countertop, streamlined under-sink storage, recycled empty bottles, and disposed of a large bag of trash.  I corralled our dirty clothes into six sorters: whites, darks, brights, jeans, towels, and miscellaneous, and removed them from our master bedroom.  I touched every item of clothing in our closet and removed a quarter of my clothes to donate to the local thrift store.

As this organization obsession began to extend beyond our home and into my workplace, I felt out of control.  The motivation I felt to simplify my life and our home was real, but I wanted to identify its source.  I read from books I love, listened to music, stayed up thinking, talked with Daniel, debated with my mom, and came up withsome ideas:

• The world is, as is arguably almost always the case, out of control.  My life is one thing I can, for the most part, control.
• The large cities we visited on our trip overwhelmed me and reminded me to delight in the simple things.
• The post-vacation exhaustion reminded of fibromyalgia flares which reminded me that excess stuff overwhelms me.

While I am not sure I’ve identified the source for my motivation, I do know I’ve realized something life changing.

A few days ago, as I stood in our master bathroom, I got to thinking…

I wouldn’t use our bathroom any more if it were larger, if it were a different color, or if it had a larger closet.  This is what I have, and I don’t want stuff that doesn’t matter distracting me from people and things that do.

I know it is ridiculously simple, and it may not strike a chord with you, but it has changed my life.

Don’t get me wrong.  I’m not an advocate for abstaining from the pleasures of life and denying yourself comfort.  In fact, I’m quite the opposite.  I like to save (time or money) on those things that don’t matter so I can splurge on the things that do. I know there is an art to keeping only what you need and what you love, and freeing yourself from excess.  I know that such an art opens room in your home, in your mind, and in your heart.

You see, I am an advocate for keeping less, and living more.  And I know mastering this art will take a lifetime.

Notice I didn’t say, keeping less, and doing more.  Because I’m not, doing more, that is.  In fact, I’m doing less.  I’m doing more of what I love.  More of what matters.  More of what is good and worthy of my time.  I am doing less of what I feel obligated to do, less shopping, less eating, less sleeping, and less nothing.  I am more close to my loved ones, more relaxed at the end of the day, and more aware of my Heavenly Father’s hand in my life.  And, most notably, I feel there is less left undone.

Over the next few weeks I will share the lessons I learn as I continue to strive to keep less, and live more.  I challenge you to join me.  Start by identifying three ways you can keep less, and live more.

No related posts.

If you have not yet read Chronic Pain and Cortisone, Part 1, please do so now.

When it came time for Dan to head to the fitness center, for my second post-cortisone trip (6 days after the injections),  I chose to stay home and enjoy my still-increasing soreness.   But I felt a bit guilty and thought I should at least do something to continue forming a habit of making fitness a priority, so I vowed spend some time with wiiFit.

And I did.

For all of 60 seconds.

I don’t know what happened, but standing on the wiiFit board aggravated my back almost instantly.  It was all I could do to gut out the body test… 100% of my pain returned, instantly.  I tried to ignore the discomfort and play some games, but I couldn’t see straight.

You know the feeling… Your vision blurs.  Your hearing fades.  You feel paralyzed… Incapable of breath, movement, and thought.

After collapsing back onto the couch, I opened the draft I had begun prior to dinner, and prior to my wiiFit fiasco, and started typing:

Nevermind what I said.  This is far too early to be passing judgment regarding the effectiveness of cortisone shots as treatment for my chronic pain.  All I can say is what I know:

• Cortisone shots are common.
• Cortisone shots feel strange.
• Cortisone shots made me hurt for two days.
• Cortisone shots relieved my pain for five days, until tonight.

Beyond these simple statements, I cannot say much.  But, you know me… Give me time, and I will give you an honest opinion based on personal experience and research.

……………………………………………………….

Now, three weeks after my first experience with cortisone injections, and two weeks since I wrote the above, I am back to share my experience.

While the cortisone injections helped reduce my back pain, I feel a bit hung up on the fact that I am treating yet another symptom, while the cause (known or otherwise) continues to exist (I assume).  Maybe I should not be so quick to write off the benefit?  The injections did break a season-long cycle of pain.  And I firmly believe that is a necessary step in eradicating pain… teaching your body not to hurt.  Call me new-age or crazy, but I’m right.

In closing, to be honest, I don’t think I will get these shots again.  I appreciate the pain relief and can’t imagine what I would have done without it, but the cortisone didn’t fix the cause, so when I lift things, bend just right, or sit for extended periods of time I still hurt.  I do not want to grow dependent on just relieving pain.  I want to heal.  I want to get well.  And, after researching cortisone, I don’t want to put anymore in my body.  I find no fault with those who get regular shots, I can’t blame them.  The relief is noticeable and has drastically increased my mobility and endurance.  However, I fear the side effects.

Having said that, I admit I can imagine a day, not long from now when I remember just how badly I hurt and just how much relief the injections provide, when I will retract this goal and make a return visit to my orthopedic doctor.

In the mean time I am pursuing another route through recovery to wellness.  More on that, to come.

Related posts:

1. Chronic Pain and Cortisone, Part 1
2. I Read: Stepcase Lifehack or Fibromyalgia and (Chronic) Pain and Posture
3. Fibromyalgia, Mornings, and Pain: Don’t Give In

Last night, after months of babying my back, I decided to head to the gym with the guys.  You see, my husband meets a friend to workout every night at nine.  And I love working out at nine.  In fact the whole tradition was my idea.  Well, the latter half.  I worked out nearly every night at nine during my summers home from college.  It did wonders for me.  It helped me turn my freshmen 15 into the sophomore sans 10.  It strengthened my relationship with my roommate.  And it reminded me that fitness and fibromyalgia could coexist. The whole working out bit was strongly suggested by our doctor, concerned about Dan’s high cholesterol .  Although, I am also a fan of the working out bit, considering I want my husband to live as long as possible.

Anyway, while they guys focused on cardio, I heeded the advice of my family doctor, my chiropractor, and my orthopedic doctor (Is there a one-word name for those folks?) and focused on my upper back and arms.  And like a true exgymnast/athlete, I overdid it… for my current fitness level.  But I am proud of myself.  What an improvement from a week ago!

A week ago was pretty much like a month ago…  the only thing I was overdoing was nothing.  Mysterious and severe back pain, multiple appointments with multiple doctors, and only minor pain relief.  Until Thursday six days ago?

Thursday I met with an orthopedic doctor to discuss my back pain, and before I knew it was receiving trigger point injections.  I really liked this doctor.  He agreed with my opinion of fibromyalgia and he was simple in his explanation of my pain, but he was so efficient I can’t remember if he explained trigger point injections before or after I experienced them, first hand.

Oh well.  I do remember him explaining just how sore they would make me.  I do remember him warning me I may feel dizzy and/or experience a headache (a total understatement).  And I do remember him telling me it’d take at least 36 hours to experience relief.  But, I’m no doctor, and to be frank, I wasn’t satisfied with his explanation (a little late for that, eh?), so when I came home I hit up Mayo Clinic for some info on cortisone shots.

As promised my back was incredibly sore for nearly two days, but by Saturday night I was feeling better.  My back pain, as well as the post-injection soreness, was almost completely gone and I was back to my usual activities.  So, last night, after months of babying my back, I decided to head to the gym with the guys (cue literary comment from my sweetie).

Now that you’ve read Part 1, be sure to head over to Chronic Pain and Cortisone, Part 2.

Related posts:

1. Chronic Pain and Cortisone, Part 2
2. I Read: Stepcase Lifehack or Fibromyalgia and (Chronic) Pain and Posture
3. Thank You FibroFolks! Chronic Pain and Taking Time to Be