Rube Goldberg

rube

You’ve seen a Rube Goldberg machine haven’t you?  It, according to source-of-all-sources, Wikipedia, “is a deliberately complex contraption in which a series of devices that perform simple tasks are linked together to produce a domino effect in which activating one device triggers the next device in the sequence.”

Artist and engineer, Rube Goldberg, drew many of these machines, like the one posted above, I think, to poke fun at humanity and our tendency to take too many steps to accomplish a simple task.  It’s just like us, isn’t it, to create a contraption that involves two people, a kitchen timer, a series of pulleys, and fire, for heaven’s sake, to get an olive out of a jar.

I was thinking about Rube Goldberg earlier today when I started piecing together the series of events that was involved in securing an appointment to get a third opinion on my medical diagnosis. You’d think it might be as simple as taking the darn lid off the jar, reaching in, and grabbing an olive, wouldn’t you?  Pick up the phone, touch a few numbers on a screen, ask a question, put a note on the calendar.  Easy.

But not really.

I’ve put the process off for a while.  Over twenty months ago, my then rheumatologist told me, not for the first time, that since she didn’t agree with my former rheumatologist’s diagnosis of psoriatic arthritis but rather thought I had fibromyalgia, there was no longer any need for me to be seen by rheumatology.  In fact, any primary care physician could manage my pain with prescription NSAIDS.  I should, she said, attend a workshop on fibromyalgia at the university and come to terms with my diagnosis.

I didn’t agree.

I had, and still have, three other members on my team. (I have written about this before.  If you want to meet my team, click here.) They supported my decision to disagree with the fibromyalgia diagnosis.  So, for twenty months, I have worked with this team and have been functioning quite well, as long as I keep my Kristin dial set at about 50-70%.  If I keep my self at a reduced level of functioning, inserting yoga, rest, physical therapy, chiropractic care, healthful eating, and regular walking, I have a manageable level of pain, psoriasis, fatigue, etc.

The problem is, that after a while of 50-70%, I get a little restless.  I think to myself, “Hey, self, you feel pretty good.  It probably wouldn’t hurt if you had three social engagements the week that you are planning to go out of town on a retreat.  I’m sure you’ll be fine.” Yeah, I say things like that to myself and I believe them. Still.  After almost four years in this adjusted reality.  Sigh.

Well, if you read my last post, you know that for about the last six weeks I have pushed myself to function consistently between 70 and 80%.  About 10 days ago, I “fell” pretty hard, and I’ve been hobbling along, still trying to keep the dial set at about 70% ever since. No surprise, I’ve still got significant pain, sustained eye symptoms, and the kind of fatigue that causes me to fumble with words, collapse on the couch, and sleep sometimes 10-12 hours at night.

So I got to thinking, as one does when she’s packed in ice, maybe I should give rheumatology another try.  Maybe 50-70% is my sweet spot; maybe, as I’ve been saying, I do my best caring and listening when I slow myself down enough to notice what’s happening around me rather than constantly pressing full steam ahead.  But maybe, just maybe, at fifty-one years old, I should explore the possibility of improving my health so that I can function at say, 80-90%.  Wouldn’t it be worth a try?

I’d had this thought before the crash, too.  In fact,  I tried to have my last rheumatologist re-examine my file.  In the large university where she dwells, I have to reach out to her through an electronic portal.  I did. A month ago. No reply.

So, last week, when I was face down, I crawled over to my laptop (figuratively, of course) and requested an appointment with her.  They gave me her next available — three months from now. Sigh.

So, I Googled rheumatologists in my area and called one that is in my vicinity.  They are scheduling four to five months out. The receptionist suggested I call another nearby practice since they have more docs on staff and might not have such a long waiting list.

Let me just say here that I really don’t like talking on the phone. I make exceptions for my parents, my siblings, and my children, but when it comes to businesses or, worse, doctor’s offices, I try to avoid phone calling like the plague.  The fact that I was willing to pick up the phone twice in one day last week is evidence of the fact that I was indeed miserable. I felt so badly I was willing to call not one but two doctors’ offices.

And you would think, like I did, that I was pretty close to getting the olive out of the jar. No, I had miles to go, my child, miles to go. The second practice said they were indeed taking new patients, and they were scheduling in the next month.  All I needed to do was get a referral from my doctor and fax my medical records.

Those were the words that Rube was waiting for. You see, my primary doc, a DO who has coached me through homeopathic remedies, advised some nutritional changes, and has prescribed the fabulous physical therapy described here, recently relocated her practice and reduced her office hours.  I sent three emails before I got a reply.  I’ll admit that that last one may have had a tone.  Ok, it definitely had a tone, which is why she called me back and left a message. She asked me to send her a detailed message fully explaining why I wanted this referral. So, I sent email number four. It was a page long.

Then, I tried to request medical records.  Here’s the thing — the new doctor’s office said they needed my medical records faxed to them. My two prior rheumatologists’ offices said they could only email a record. I plead with the new office.  After all, I had two zip drives on the desktop of my Mac.  I could send them my full record from January of 2013 until now — every test, every x-ray, every prescription — in a couple of clicks. Nope.  They “don’t receive email.”

I shared my plight on Facebook and two friends came forward with a plan for how I could use a free website to convert my documents to a fax right from my laptop.  Who knew?

So, while all those gears and pulleys were doing what gears and pulleys do, the weekend arrived and I knew I wouldn’t hear whether or not my primary care doc would give me the referral until Monday.

Saturday morning, after yoga, I was running a few errands when a friend texted me.  She and her husband had tickets to a concert that night.  They couldn’t attend due to illness, would we like the tickets.  My husband and I exchanged a few texts and decided that yes, since going to the concert meant sitting with several other couples from our church we would go.  It would be late, but we were planning on attending the late service the next morning, so it should be fine. (This is how people with chronic illness make decisions, by the way — always measuring.)  A little while later, one of the other couples who was attending the concert texted to say that several were meeting for dinner first, would we like to join.  Well, I mean, we’ve got to eat, right?  These are people we don’t know well; it would be good to get to know them better. I’d be fine to go out for dinner and a concert. (Yes, this is me, continuing to press limits even when I’m already down.)

Why am I telling you about dinner and a concert?  Because the weirdest twist was added to the Rube Goldberg machine.  Eight people at a table and my husband and I end up sitting next to a physician with the same genetic marker that I have. I don’t usually bring up genetic markers over dinner, but he did.  It was weird.  We shared stories and frustrations.  At a dinner we weren’t meant to attend before a concert that we hadn’t planned on.  The next morning, after Easter worship, this same physician waited for me at the back of the church and handed me the names of two rheumatologists at the practice I was trying to get a referral to.  He had researched them when he got home the night before and thought that of all the doctors at that practice, these were two he would recommend.

Monday morning, I had an email from my primary care doc.  She had sent the referral. Today, Wednesday, I got a phone call from the new doctor’s office.  I pulled the recommended names out of my purse while I was on the phone with the receptionist and took a deep breath before I asked if there was any chance that my appointment could be with one of them, who just happens to not only be a rheumatologist but also an optometrist.

And just when I was starting to think that the whole thing would come crashing down, that I wouldn’t get my olive after all, the receptionist booked me with that specific doctor for an appointment just under two weeks from now.

Rube Goldberg? I think not.  I know only One who can take a very frustrating and seemingly hopeless situation and make it work out better than I had asked or imagined. And do you know what? The elaborate machinery of it all, the Divine intervention of it all, has dispelled my anxiety about going to one more doctor, telling my story one more time, and risking the possibility that she won’t have any answers for me at all.

Because I know who does have the answers, and, because of that,I am not afraid.

Romans 8:28

And we know that in all things God works for the good of those who love him, who have been called according to his purpose.

 

 

 

 

 

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