Recently I’ve real­ized some­thing I may have already known, but it’s struck me so pro­foundly I thought I ought to pass it on.

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.

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.

Genevieve

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 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.

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?!”
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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.