Month: March 2013

I am my own Olympic event.

 

Yesterday was not good.  In fact, it sucked.  My joints burned like fire and I couldn’t really move without the fire spreading.  I was trying to be still with the pain and not let it take me out so I decided I would play Olympics with myself:

Announcer:

“This is Katie Kelfer on the swollen and achy joints high beam.  She is positioning herself   for take-off from the couch.  You can see the precision in her execution as her ass leaves the cushion.  And, watch… YES!  There it is.  She is up. There was a balance check when she hit the floor. That will cost half a point

What will her next move be?  Is it? No… it can’t be…

Yes!  She is going to bathe.  Wow.  No.  I can’t believe it. She’s shaving.  What grace. What finesse…

How does she do it?

Ok now, she is clothed and headed back for the couch.  She is through the prelims and we are wondering if she will get to round two.  Certainly with a performance like that there is definitely hope.  Wait, wait, here she comes now.  Let me interview her,

What did it feel like to move all the way from the couch downstairs to the upstairs bath?

“Well, Larry, I tell ya, it felt like crap.  I thought I could power through and maybe the pain would get better but you know what?  I was wrong.  I am utterly fucked today.  I don’t want to take the hardcore pain meds so I am going to keep moving and see if that helps.”

“You heard her.  Keep moving.  Will it work?  We will see when we are back for round two in the semifinals.”

“Hi, I am Larry Loser here at Taylor Zoo Stadium announcing the women’s connective tissue disease races.  Earlier we watched first time Olympian Katie Kelfer qualify for the semi-finals by moving from the couch and upstairs-through a bath and dressing experience and back to the couch.  There were a few balance issues but her score remains the highest in the category.

In the semi-final round, we had our cameras posted on the snail races to drum up audience approval.  Now, we are back for the connective tissue disease finals.

It’s bed time, folks.  Who can get to sleep first, with the least amount of narcotics?

Katie Kelfer is down by half a point already for whining to her spouse.

Her spouse is asleep and Katie is trying to accomplish the same and achieve the gold.  But it isn’t her night. The pain has turned into hot lava and is pouring, like fire, through her body.  She relents and goes for a small dose of the diluadid.

She reads and tries to focus elsewhere.

But no, it is midnight and relief is too far away.

At last, Kelfer is disqualified from the event.  She takes the second dilaudid  dose at midnight.  Sleep, however, still proves elusive.

She will not be medaling in the event tonight.”

Triggers:

I am not going to discuss Roy Rogers’ horse here.

Triggers are things that can set off a day or a week or more of shit health.  That seems obvious enough. A trigger sets off a flare.  Knowing what your triggers are can save you from having a flare.  Well, that seems pretty simple.  It isn’t.

How in the fuck are you supposed to know that staying out past 8:00 on a Saturday night having fun with your family is too much?  You just don’t know.

Some things are obvious.  Sleep is a must.  Hydration is a biggee.  Food is also important.

But lately I have been wondering about the triggers that start us down the path of disease itself.  I mean, what if certain stressors had not appeared in my life?  Would I have the chronic illnesses I have today?  I can identify pretty clearly the times in my life when my health has taken a bit nosedive.  Each of those times had been linked to a period of incredible emotional stress.

For me, the mind/body connection is very clear.  But, that doesn’t mean I have any sort of handle on it at all.  I don’t.  In fact, I have absolutely no control over it.

That is so infuriating that I think it almost makes it worse.

When I was 29, we moved across the country, my father died, I got pregnant and I became an ordained pastor of a difficult parish.  My husband had a job with a huge commute.  Our lives were very stressful and we lived in a parsonage that was from the 1880s and filled with mold.

I had the baby and then got very sick.  I had infection after infection.  I sometimes wonder if that was the trigger for my   CVID.  It is almost like it lay dormant before that.  I mean, I had a lot of illness but after that period, it went nuts.

A similar scenario happened when I was diagnosed with mixed connective tissue disease.  I was in my early forties and on IVIG.  I was teaching college part time and commuting a long way.  I had two kids in school and my mother was dying of cancer 90 miles away.  I was driving to see her as often as possible and we were caring for my mother in law, who was also ill, closer to home.  My husband’s work schedule was inflexible and we were simply overstretched.

I fell apart as soon as mom died.

My body could not sustain the pace.

Is my body weaker than it ‘should’ be?  Does it do any good to be angry about it?

Now that I am no longer working and both my mother and mother in law have passed away is life easier?  I don’t know.  It is lonelier.

I am learning to live a day at a time.  I am writing.  That is the one thing I know how to do.

I am going to find my way and fight this good fight one battle at a time.  I hope to learn as I go and maybe show the way to others as they fight.  There are but two choices here: fight or give up.  Giving up is not an option.

There is too much at stake.  I tried being stoned and it has its attractions but I have too many people and creatures depending on me.  I have to keep moving.

Come along with me for the ride.  Maybe we can learn to laugh as we fall on our asses together and slowly get back up and move on.

Furry People

Furry people help me live in a better place than the one I inhabit alone.

Furry people are dogs and cats and (now my son has a bird) and I consider them my children.  I know that is cracked.  I don’t care.  I try not to tell people outside my family unit how I feel about my animals. After all, I don’t want to be locked up. The animals give unconditional love.  They are here when no one else is home.  They are warm and soft and when I am at my lowest, they know.  Usually, Penny, my smallest dog, gets in bed with me and stays the whole day, practicing ‘heel.’

The animals are our family hobby.  We gather around them to watch them play and to play with them.  As a family, we talk about them and enjoy taking the three dogs out to parks or swimming holes. There is something completely engaging about watching a dog frolic in the water: or watching the kitten chase his tail.

Often, when I cry, I hug one of them.  They don’t understand, but they know I am in pain.  I have noticed that it causes the dogs to pant.  My pain makes them sweat.  I wonder why that is.  I think the secret of the furries is just that: they care and their capacity to care is endless.  They never judge.  They don’t ask if the pain is real or if I am going to ever get better.  They don’t care if I am contagious.  It doesn’t matter if I haven’t brushed my teeth.  The animals know what I need, instinctively.  If only they could accompany me on those difficult trips to ER or the hospital stays that suck so badly.  I have often wished I could sneak Penny dog into my infusion treatment.

I know I sound like a real baby talking about all of this but I think there is a deeper level here. Human beings are too complicated.  We worry about ourselves: “Am I going to get sick too if I hang out with Katie?”  “Is Katie going to die?” “I can’t help her and I am too uncomfortable to stay here.” Etc. etc.   The animals don’t have all these thoughts and dilemmas.  They just know they are needed.  They only have one job description: to love and cuddle unconditionally.

They do that well and sometimes, that is all  the sick person needs.

Thanks be to God for the Furry Children.

Well, I have a date with a GI doc in Jacksonville.  I was able to move up the date significantly by calling the nice appointments lady back just once.  It seems things are taking shape for this trip.

In addition, my sweet, sweet cousin, is taking me.  I can’t believe it.  I have made both of the previous trips alone.  It totally sucked but I had to do it.  My cousin is more like a sister to me and as we have aged we have both realized, I think, that we don’t have a lifetime left to ‘see each other later.’

Anyway, she is going.  I cannot even begin to explain the peace of mind this gives me. I think we are going to drive from my cousin’s house near Beaumont, TX and I will ride along.  I already have my room reserved at Mayo Inn.  It was so SAD.  Georgia, at the front desk at Mayo Inn, recognized me:( ACK.

My cousin can go home when she needs to and I can fly back with a one way ticket.

Now begins the self talk that drives me nuts, “do I really, really need to do this? ”  I keep wondering if I just take more steroids or go back to San Antonio or push harder on my doctors here, maybe I can get it solved in Texas.

I actually got a call back from the surgeon in San Antonio yesterday.  The remembered who I was!  They wanted to schedule me for a biopsy.  This is after I called them every day for over a week and they couldn’t find a file indicating I was ever their patient.

But, oh, I hate to spend all this money and time in Florida.  I feel like it had better be worth it.

I am familiar with all the stages of this process now: A. Sick and no diagnosis.  B.  Talking to specialist after specialist here in Austin. C. Hospital. D. Growing awareness that I may need to go back to Mayo.  E. Decision to go.  F. Appointment wrangling and details. G. Self doubt and guilt.

Rinse, repeat.

I am too tired to make good decisions right now.  And what is really bugging me, besides pain?

I’m gaining weight.

I know, that’s deep.  Really deep.  I look like the  Goodyear blimp.

Do I really have to go to Mayo again?

Yes. Yes I do.