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I'm Kate.

I have Fibromyalgia, POTS, Osteoarthritis, IBS, CFS, and SVT.

I am humbled by, and grateful for the lessons I learn through, my invisible illnesses.

Kate Update: January 6, Mayo Clinic, Medicine

January 6, 2010

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.



Puppy Food: Day 1

Kate Update: January 5, Mayo Clinic, Day One

January 5, 2010

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 found 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.

Kate Update: January 4, Arizona, Mayo Clinic

I’ve pondered how best to relate the events of the last month, and have decided to be most open and share the notes I wrote for myself , while in Arizona.  These will read a bit more like a journal than you may be accustomed to, but I make no apologies.

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?!”

Kate Update: What is Possible and Getting Lost

Those who love me don’t understand why I have not written. In fact, I do not understand why I have not written.  They remind me I committed to tell you about the health issues I face, so we may create a positive and fresh community of folks who strengthen each other and learn from each other. They are right. And I have 12 article drafts saved in my WordPress. But I have no guts to post.

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.

Kate Update: Please Forgive Me

I know I should have something to say.

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.