The End of the Summer of All Summers

So summer has come to an end.

The summer of our 25th wedding anniversary and a heart full to bursting with thankfulness for what those 25 years have meant and continue to mean. Everything on from the day that Piper said “Yes” to my marriage proposal has been above and beyond, and my life, blessed and full.

The summer of trial and error for doses and medications and tracking changes and pondering outcomes and presenting effects and efficacies (or the lack thereof).

The summer of medications, in different shades of color and different shapes, each targeting a different brain chemical, making war on anxiety and coaxing me out of depression and as a side bonus trimming down my weight (13 pounds and counting), but totally screwing with my sleep and occasionally my digestive processes much to the delight of the people who manufacture and retail toilet paper.

The summer of therapy and fewer tears and no more paralyzing uncertainly and the erosion of a mountain of self-doubt into something resembling foothills under assault by wind and wave. And as a side bonus, I no longer care how the dishes are put away (though I still fill a perfect dishwasher).

The summer of sore and swollen joints and strange face rashes and fatigue that makes me nap like some over tired two year old but without the hissy fit or room full of scattered Legos. Of blood test after blood test after blood test (all positive) a couple of trips to the Rheumatologist, an exam and a diagnoses of Lupus.

The summer of discovery other auto-immune challenged friends ready with encouraging words and their own stories and trials. Of praying friends near and far and folks who drop by online to ask how I am and leave a word or two of encouragement. Of people ready to help out, to jump in, to do whatever is needed today, tomorrow or ever.

The summer of the new kitten once sick and dying, now soft as silk, spunky and precocious, cuddly and ready to bring the peace of purring that passes all understanding when the fatigue sets in.

The first day of fall was a good day. The first in a long while. No nap needed. A good night’s sleep. Time with the one I love dearest and best and always. It was still godforsaken muggy hot, but hey, this is South Florida and I know what I signed up for moving here 14 years ago.  Next week I will be in Colorado giving a presentation on Cross+Generational worship and hanging out with people who know me and love me as I am, even the somewhat thinner and medicated me with an occasional slight limp, grimace, and all.

It was the summer that I began to BLOG this journey of mine. But not only of mine as I have come to discover, but of many. Thank you my friends for coming along and sharing and reminding me that none of us ever journeys alone.

Why It Is Far Easier To Say “Lupus” Than “Depression”

It is much easier to tell people that I suffer from lupus than it is to admit that I also suffer from depression.

Even though an awful lot of people look at me bewildered when I say the word “lupus,” though less than I thought, which surprised me. People often know people that have lupus or know someone who knows someone, a cousin, an old high school sweetheart, that sort of thing. But they still aren’t sure what it is, not exactly, anyway.

“An auto-immune disease,” I say, trying to be helpful.

“Oh, I see,” they say, but they don’t. Eyes never lie and people don’t like to admit when they don’t know something that they think they should know. Like auto-immune diseases. Go figure. Now that would be a category for Jeopardy. “Alex, what is Systemic lupus erythematosus?” [Alex, smiling] Correct!

“My body is attacking itself,” I suggest. “I must have made it mad or it got bored or someone is asleep at the switch and dialed up “body” instead of “germs.”

They nod and I continue: “Or more specifically, knees, and my left thumb, and hips and my right foot. And my face gets a rash. And then my body gets all tired out from boxing with itself all day long and I have to take a nap.”

“You get to take a nap? That doesn’t sound so bad,” they say.

“With my kitten, who likes to lie on my chest and comfort me by purring, so I guess you’re right. The naps are good. Except when I wake up and have no idea what day it is or time it is and wonder if I am late for something important.”

“I see,” they say. “I See.”

“And they have me on an anti-malaria drug to deal with the swelling and to protect my organs from the possibility of damage during a flare up [insert very quizzical look here] because they found that this drug also helps with lupus. And they have me on drugs for stress because that can trigger flare ups, too.”

They nod. That makes sense. To everyone. Stress kills. We all know that then live like we don’t care or can’t do anything about it. Or C’est la vie! I’m not sure if I am technically lying when I say that; that they have me on medicine for stress. It is true, but that started months beforehand. When depression had such a tight grip on me I was constantly cleaning my glasses from the tear stains and paralyzed into inaction when facing difficult choices. Exactly how tears stains get on my glasses is still a wonder to me. One of life’s little mysteries. But there the dots were as if the tears had clung to my lashes and were sent flying about until SPLAT!, like insects on a windshield they left their mark.

Depression and lupus do this little dance together like they were made for each other. But which came first? The answer with a little research is “Yes.” Lupus can cause depression and depression can happen all by itself parallel to lupus and  lupus like any auto-immune disease can lead to depression from the weight and wearing on of the symptoms.  I’ll leave the arguments to the brain and body bio-chemists, because in the end, it just doesn’t matter. I would be taking the same small handful of pills every morning and evening regardless.

While I have been very willing to share with the congregation my lupus diagnoses and what it means for me and to welcome their prayers, exactly three people in the congregation besides my wife know about the depression: the Pastoral Care Team and a nurse who also heads up our Care and Concern Team.  It is one thing to be open about being on “stress medication” for lupus and another thing altogether to say that it is for clinical depression. Even as public as I am about depression here, there is still a sense of stigma that I have not yet overcome.  I don’t beat myself up over it, nor am I certain that I will maintain my in-public silence forever, but how much should I disclose to those I am called to shepherd is a question that I have not yet answered for myself.  Maybe that is part of the healing.

In Which I Find Other Friends with Facial Rashes and Diarrhea

Knowledge is power. But honestly, at some point, it just drives you batsh*t crazy.

I have spent the last week researching lupus and having some conversations with those who have been diagnosed and are on similar medication.  The general research is full of possibilities and dangers and such. So far everyone that I have talked to has a mild form of one of several auto-immune disorders. We have agreed that the medication considers our bowels its playground and that it doesn’t play very nice, like those elementary school bullies who were willing to do anything to win at “King of the Mountain.”   We all get tired and all are working on lowering the level of stress and anxiety in our lives, which among us is universally high. Most of us are on medication for it and nearly all of us on several of them. We carry around SPF 50+ products in small convenient tubes to smear on our noses and cheeks and foreheads and other exposed skin in order to prevent reactions from the sun, both due to our disease and from the medication used to treat it. We compare facial rashes, which is about as much fun as it sounds.  We wear long sleeves and long pants in the summer. In Florida. And we wear hats that most of you would not be caught dead in even on Halloween, floppy monstrosities with embedded sun protection and ventilation of a kind. If there is a breeze.

Lupus manifests itself differently in different people depending upon where the disease decides to flare up at a given time and over one’s life time it can do this is in many different places causing a variety of symptoms. Symptoms like joint pain and fatigue, my current serving. Only six more weeks until my next blood test according to the paper calendar I refuse to give up despite a very smart phone begging for me to go all digital. Give more blood, then the waiting to see if it is getting more intense or lessening. For now. And then an eye test to make sure the meds aren’t screwing with my macular. Which it shouldn’t. But, just in case, as a conservative precaution, says my eye doctor and rheumatologist.  No one under 50 should have to learn the word “macular” who isn’t getting paid to know it.

I have taken more naps in the past two weeks than I have in the past twenty years due to the fatigue, the new medicines, and me trying to figure out a daily work routine that works. A month ago I usually stayed up until 12:30AM and slept in until 8AM, loving the quiet evening hours to work or relax and gather my thoughts. I did this for as long as I can remember, but now it is time to make some new memories which involves getting up before the dogs.

On the plus side this week, the kitten, which I refer to as my therapy cat, is well enough that he delights in climbing up my body while I am standing still. Yes, his claws are that sharp. And no, I did not teach him this trick.  I am still losing weight, but slowly. Early to bed and early to rise and all that. And a side effect of the one of the meds apparently. Won’t my General Practitioner be ever so pleased when I have beaten her target weight for me? The depression meds are in refills and to my way of thinking have passed some serious times of testing in my life and have proven their worth.  We’ll see what the therapist has to say. I have so much to share with him next time like what it was like trying to explain to my oldest boys what it means that I have an auto-immune disease. “Will it kill you dad?” one wanted to know. “Very unlikely,” I responded.

But I am starting to have doubts about surviving long unless the kitten has his claws trimmed a little.

At Least I Didn’t Have To Bend Over and Cough

So the conversation went something like this:

Doctor: So you need to avoid sunlight.

Me: Ummmm…

Doctor: Well, you don’t have to be a vampire or anything, but stay out of the most intense hours of sun. And wear SPF 30.

Me:  My outdoor clothing is SPF 50.

Doctor: Good! And take vitamin D. And eat more fish.

Me: Good to go there. Already do.

Doctor:  And take yoga. You know, exercise to combat the fatigue.

Me:  Yoga. Haha. Started three weeks ago. [I am so not telling her the yoga farting story].

Doctor: And we’re putting you on this medicine that should help with the joint pain and prevent damage to your organs.

Me: [Organs?!] So this is real. You are diagnosing me with Lupus?

Doctor: Yes.   

On the plus side, my wife smiled when I told her that the doctor prescribed more yoga. And my friends smiled (well, posted “smileys”) when I dropped the phrase “to prevent organ damage” on them.  And the medicine I will be taking also prevents Malaria. And the Lupus is mild at the moment and could stay that way forever. Or not. Apparently it is different for every person.

And apparently my anti-depression meds are working because after a week in which our membership decreased a few ticks over issues that keep most pastors up at night, I am sleeping fine and enjoying the side benefit weight loss over my earlier bed time and more even-keeled demeanor. About two pounds a month according to the ever popular scale at the entrance to our neighborhood grocery store. I want to meet the human behavior consultant who recommended putting it there where I swear nearly every single person who enters the store steps up on it and shakes their head and looks twice at the brownies that are on sale right inside the door.

Besides yoga, my other complementary treatment for my depression involves the decision to keep the abandoned and sick kitten that our middle son named Apollo, but who we call Wolverine. (Give you three guesses why). After three courses of anti-biotics and multiple de-wormings and some TLC, he has tripled in size and runs the house and snuggles up with me like he knows I need to feel a purring kitten close to my heart. And he does this a lot.

It meant more than I can say to have my congregational council praying for me this week. And checking up on me after my doctor’s visit. And to see the way in which they continue to grow in leadership and responsibility and faith. Especially faith. One day at a time one of them told me today.  Someday I will figure out what that means. One day, I promise.