I have underestimated the power of friendship. If I sit and think about all the people I have loved or been loved by over the years, I have to admit that I have not been a very good friend. I … Continue reading
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.
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.
It couldn’t have been the women’s retreat over a month ago. It probably wasn’t the day trip over Spring Break. Or the hours of tutoring. Or teaching two classes. Or two recent back-to-back road trips. Or the fact that I haven’t found a free hour in the past month to do any blogging. No, not one of those things slammed me to the floor. In fact I was standing up straight and moving around freely even through this weekend’s musical that went way past my bedtime and through the day-long festivities yesterday at our church. Not only that, I woke up today, planned two classes, graded some papers, taught on my feet for two hours and then gave a private lesson before coming home at 5 and making a double-batch of caramel corn. I had two loads of laundry folded and the ironing board set out when I finally admitted that I could do no more. I grabbed an ice pack and found my way to the floor.
I stayed there icing through the news, Wheel of Fortune, and Jeopardy. Then, I switched to heat for The Voice. The ache was deep in my hips, sacrum, and sacroiliac joints. Nothing was dulling the edge. Glass of wine? Tried it. No help. Then, although I have been committed for over a year to no NSAIDS or other pain meds, I finally caved around 8:30 and took 400 mg of Ibuprofen. An hour later I took 400 mg more.
I put myself in bed and willed myself to sleep. No chance. It’s been a while since my pain, which usually fluctuates between and 3 and a 6 out of 10, has climbed the scale up to what I would call an 8. I’m calling it an 8 because I can still move — slowly and with audible involuntary groans — from standing to sitting to lying, but I can’t stay in any of those positions for very long before I determine to try yet another strategy.
Around 11:45pm, I climbed into the tried and true epsom salt and baking soda bath. The deep ache persisted. I stayed there for more than 30 minutes, trying to give the magic a chance to work. Finally, I admitted one more defeat, crawled out of the tub less than gracefully, dressed, ate a banana, and thought to myself, “Have you found a limit, then?”
Just yesterday, a good friend said to me, “You need to find some time to rest.” My husband, bless his heart, also gently reminds me and then lets me figure it out. He knows that I want to seem ‘normal’, even if temporarily. The longer stretches I have of doing well, the more I question the validity of my limitations. When I begin to doubt my limitations, I attempt to accomplish even more. It’s a vicious cycle.
Anyone with a vague diagnosis or an invisible illness will tell you that we are our biggest skeptics. Although we may have very difficult days, characterized by extreme fatigue, insistent pain, or a rash that erupts (right on my face, thank you very much), we also have days, weeks, and sometimes up to a month or more, when the symptoms seem not so noticeable. We begin to question ourselves, “Surely, you aren’t really as sick as you think; certainly you can see one more student and sit through a play on a Saturday night. Toughen up a little.” It’s as though our worst symptom is amnesia — the forgetting of the consequences that come from forgetting.
When I forget to pace myself, I may do alright for a few days, or a week or a month. However, if I keep forgetting, I will eventually get a reminder. I’ve had many over the last month. When I sleep for over 10 hours in a row, that’s a reminder that I’m depleted and I probably need to take a few slow days. When I get a psoriasis or eczema breakout, that’s a reminder. I call it the ‘slow simmer’. The symptoms are beginning to bubble up, and if I don’t turn down the heat, they are going to reach a full boil. When I notice that I have to take stairs one foot at a time, I’m probably too far down the path to avoid the crash. Yesterday, when my friend, who has noticed my pace, gently nudged my memory, I said, “Yes, if I don’t willingly take a break, it will be thrust upon me.” And in a very speedy fulfillment of prophecy, here I am.
It’s been over four years now that I’ve been living in this strange reality — the reality that was named, and then unnamed,… That’s part of the struggle, too. I don’t know what to call this ‘thing’ that I have. People ask me. Often. And I give some kind of mumbled reply about autoimmunity blah blah arthritis blah blah eyes blah blah skin blah blah. By then they are more confused then I am. They don’t understand, because neither do I, why I choose not to eat gluten or dairy if I don’t really notice a difference when I do. If I try to explain that no, I don’t drink coffee because it cancels my homeopathic medicines, again, I just hear myself sounding like the teacher in the old “Peanuts” cartoons. Blah, blah, blah.
So, why am I writing about this at 1 o’clock in the morning? Because that’s what I have. Writing continues to be the way that I think through all of this and try to find the meaning. And yes, I realize, I just have to go back a post or two to the last time I wrote about how blessed I am that God has provided this season of slowness, that He has allowed me time and space to be aware, to be available, to just be. But just like every other gift I’ve been given, sometimes I don’t appreciate fully it. I want to take it back to the store and see what I can exchange it for. I think I’m going to find something better, you know?
If I go just a few posts further back, I will be reminded of the drawbacks of soldiering. Just typing that word calls me out, doesn’t it? I don’t even want to go back to the first paragraph I wrote here today, because that’s what I’ve been trying to do — go back to my soldiering ways.
If I don’t stop writing here, I’ll start drawing parallels to the ancient Israelites…and it’s already 1:15 am and I’m already at over a thousand words. So, go ahead and draw your own conclusions. By now, I’m sure you’re way ahead of me.
As for me, I repent. I’ll try to get some rest. And then I’ll probably cancel my tutoring for tomorrow. Because sometimes even retired soldiers need a little R ‘n’ R.
“Come to me, all you who are weary and burdened, and I will give you rest.