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.

 

 

 

 

 

Sigh.

It all started with me wanting to find the sunglasses that clip on to my prescription glasses.  I picked out these glasses because they came with magnetized sunglasses that I can just attach whenever I am in the sun.  I purchased them in August and enjoyed them on our trip to South Africa in October.  Because I am prone to lose things, I mechanically placed the sunglasses in their case and slipped them into the same compartment of my purse over and over again so that I would not lose them. It is no small miracle that they made it back from South Africa with me. However, I think it was within the week of returning that they went missing.

So much happened that week.  I unpacked and immediately went back to teaching and tutoring.  I switched so many bags around.  I have a travel purse, a tutoring bag, and a teaching bag.  I am sure the glasses were moved around from bag to bag, but then what happened?

Because we returned from our trip at the end of October, which was midterm, I didn’t spend the time I should’ve spent to find them immediately.  I kept thinking that surely they would appear.  They didn’t.

Then Thanksgiving happened.  After that, we had five family birthdays and Christmas in December.  Finally on New Year’s Day I started thinking about packing for our trip to Israel. Near the top of our packing list I saw the words, “bring sunglasses, you will be surprised how bright it is.” Sigh.

Sunglasses are particularly important to me.  A complication of my autoimmune disease is that I have struggled with ocular herpes and, more recently, scleritis.  I have not had a flare of either of these conditions for over six months, however, even when I am not flaring, I am no longer able to wear contacts as I had for over thirty years.  Also, even when I am not flaring, my eyes are particularly sensitive to light.  Hence the purchase of prescription glasses that come with ‘clip on’ sunglasses.

Most reasonable people would’ve called the optometrist long ago to secure a replacement pair.  Not me.  I have lost so many things over the years.  My philosophy is, “hang in there, it’ll show up.”  Now it’s forty-eight hours before we leave for Israel and I don’t have sunglasses. Sigh.

I started yesterday, the morning after the last visitor left, cleaning out my office.  It seems that my office was the last known location of the sunglasses.  I really cleaned.  I got on hands and knees, I pulled out everything.  I took items off shelves.  I dusted.  I vacuumed. I inverted every bag I own. Nothing.

Well, in the process of doing all of that cleaning, I got sidetracked into making a pile of donations.  I mean, who needs all this stuff anyway?  As my donation pile was growing, I thought to myself, “you might as well do the minimalist challenge.  It’s been two years.  Clearly you have enough stuff here.”  So, in true Kristin fashion, I got three plates spinning at once — packing for an international trip, searching for my sunglasses, and accumulating a mountain of stuff to donate. (Insert eye-roll here.)

The good news is that my bag is packed with a short list of last-minute items placed neatly on top.  The other good news is that I’m already thirteen days into the minimalist challenge after only two days of cleaning and packing!!  The bad news?  Still no sunglasses.

I really hate making phone calls, so I tried one more strategy this morning.  I was in the shower thinking of  other places I could check when I thought to myself, “hey, my eyes feel pretty good!  maybe I should try my contacts today!  wouldn’t it be great if I could wear contacts the whole time I am in Israel?”  I got out of the shower and put them in.  Hey, they didn’t feel too bad!  So, I headed off to our last Israel trip leaders’ planning meeting feeling very hopeful.  Two hours later I was headed straight to the bathroom to get them out of my eyes.  Scratch that.

I mean, I could call the optometrist, but what are the odds that they can help me? What are the odds that they are going to have a replacement pair of magnetized sunglasses in stock? Sigh.

I’m dialing now. All opticians are currently with other patients.  I’m on hold.  Wait, wait! The optician came to the phone, heard my request and didn’t laugh at me!  He’s going to check to see what they have in stock.  No, no they don’t have any.  If they order now, they won’t be here in time. Yeah, I know. I should’ve called sooner. Sigh.

So, what’s a girl to do?  I have no idea.  I guess I’m gonna keep cleaning and putting things in the donate pile.  A miracle could still happen, couldn’t it?  If not, I’ll squint my way through Israel.  Who knows, maybe it’ll be cloudy the whole time we’re there.

Matthew 6:34

Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.

 

 

It takes a team

One thread of this blog since its inception is my journey through healing.  In the summer of 2012, I noticed that my elbows hurt.  The first health professional I saw thought I had tennis elbow — even though I didn’t play tennis or do any other repetitive motion activity other than swiping my iPad. That fall I began to feel tired — reeeeeeeally tired.  As a full-time mom, teacher, school administrator, and basically busy person, I had no time to be tired.  I went to a second health professional who did some blood tests and told me I was fine.

Since I knew I wasn’t fine, I kept pushing and investigating until I landed in a rheumatology office where I was given the diagnosis — psoriatic arthritis.  By then I wasn’t just tired — I was achy and struggling with psoriasis, too. Over the next 18 months I was treated with a series of medications in an attempt to find the one that would allow me to feel the best with the least side effects. I also experimented with acupuncture, massage, and nutritional interventions. All the while, I was still working full time and preparing for a major move, my youngest daughter’s graduation from high school and my oldest daughter’s graduation from college.

Then we moved.  And, if you have been following this blog, you know I committed to some time of rest and recovery.

While resting and recovering, I saw new medical professionals who said I did NOT, in fact, have psoriatic arthritis, but probably fibromyalgia.  These doctors discontinued some of the meds I was on and suggested that I insert more exercise into my life including cardio (I was already walking and doing Pilates). I resisted the fibro diagnosis, got a gym membership, and started building my team.

Now, 3.5 years after my initial symptoms and 1.5 years after moving to Michigan, I am still on the path to healing, but I am not alone.  I have assembled quite a little network of professionals who are believing with me that my health can improve and, indeed, that my entire sense of well-being might be restored.  Let me introduce my team.

Rev. John Rathje, aka my dear husband, is chief executive in charge of encouragement.  From the beginning, he has believed my invisible symptoms are real, has accompanied me to appointments whenever I have asked, has heated flax seed pillows, purchased ice packs, rubbed sore muscles, and supported my couch sitting.  He also makes sure to remind me not to push too hard or do too much.

Rev. William Gatz is chief executive in charge of intercession.  Since the moment he heard of my diagnosis he has prayed daily for my complete recovery.  If you know Pastor Gatz, you know this is serious business.  He is a leader in prayer and intercession, especially prayer related to healing.  He also recommended that I read How Can I ask God for Physical Healing, which challenged some of my thoughts and affirmed others.

Dr. Mary Greiner, D.O. and Integrative Medicine Specialist, is the hub of my medical team.  She spends a great amount of time listening to me.  She takes a varied approach that includes, but is not limited to, pharmacology, homeopathy, nutrition, physical therapy, and lifestyle.  Most importantly she believes that I can experience a better quality of life than I have now and she is willing to walk with me until I get there.

Marcy Boughton, MS PT, is the physical therapy whisperer who is subtly coercing my body into healing itself.  She has manipulated my skull, my spine, my organs, my limbs, and, I dare say, my mind.  The woman is filled with the spirit of God — Biblical truth oozes from her as she applies her hands to my body.  It is really quite miraculous.  I have never experienced anything like it.  Once a week I spend an hour on her table and leave feeling energized and supported.  Marcy recommended that I read Dr. Gary Kaplan’s Total Recovery which is reshaping the way I think about health and the human body.

Dr. Greg Peroff, DC, is the chiropractic support member of this team.  He continually reminds my sacroiliac joint of where it is supposed to hang out and keeps my head screwed on straight. Like the others, he is committed to my overall well-being and applauds me as I walk down this path.

Of course I have other players — my eye doctor who treats the ocular herpes that resulted from my time on biologic medicines, my former therapist who walked with me before and during my diagnosis and helped me begin to see that my pursuit of health is not merely medical, but also psychological and spiritual, and a great team of family and friends. Soon I will be recruiting an acupuncturist and a massage therapist to round out this crew.

When I write it all down it seems a little excessive and somewhat selfish to need so many people. That is, when I look at it with my natural mind.  My natural mind wants to be self-sufficient and to soldier through any difficulty without the support of anyone else.  I want to kick butts and take names.

Good thing I also have the mind of Christ that reminds me that butt-kicking and name-taking contributed to me being in this position in the first place.  The mind of Christ reminds me that God connects us with others for a variety of reasons.  This team is supporting me, yes, and perhaps, in some way, I am also blessing them.

I didn’t choose the path of chronic illness, but I am choosing the path to wellness — body, soul, and spirit.  I am turning away from thinking with my natural mind, and turning toward the mind of Christ. Moment by moment, I am turning.

I Corinthians 2:14, 16

14 The natural person does not accept the things of the Spirit of God, for they are folly to him, and he is not able to understand them because they are spiritually discerned16 “For who has understood the mind of the Lord so as to instruct him?” But we have the mind of Christ.