Unlikely transformation


St. Paul Healing the Cripple by Karel Dujardin

Recently, I had a mystery illness. I woke up itchy one Friday morning. I realized that I was covered in hives. My entire body was red and splotchy. I called the advice nurse. I was told to take some antihistamines. I started with Claritin. I was told to also take Benadryl on top of that.  I was worried about being groggy so I did not take it during work hours. The Claritin was supposed to work within 2 hours. It did not so I ended up seeing my doctor that afternoon. I have seen her for decades so she knows my story and how my anxiety might be resurfacing.

I have grappled with chronic illness. I believe my condition is stress-related. My doctor disagrees because she feels like I’m very committed to self care.  She feels that I have bounced back from my inflammatory condition which hasn’t flared up in over two years. I take daily medication twice a day which I will likely do for the rest of my life. As part of my workout regimen, I take a multivitamin, flaxseed oil, and vitamin C. I also take digestive supplements ever since I lost my gallbladder.  My doctor agreed that the recent workload at my job sounds really stressful. She did also point that many colds and flu viruses this year have come with some unusual symptoms like hives. Between a state audit of records and preparing for accreditation at work (the thought makes me feel I’ll break out in hives again) and M’s dance competition, I have had quite the month of March. The hives eventually subsided but then I began to experience joint pain and swelling in my fingers, feet, ankles, knees and wrists.  My body has been known to retain water whether it is due to hormones, being 45 and a woman, salty snacks being my weakness or the fact that I’ve been drinking a lot more Starbucks chai tea to stay awake and for energy. ( No esta bien because I am supposed to avoid non-herbal teas that can cause inflammation. ) I sometimes get sore muscles from working out but stiff joints was new for me. I didn’t know if it was my age or a virus but I did let my doctor know about these new symptoms.

I had my moment of drama, my woe is me, what is happening, is this yet another health challenge. The surgery that resulted due to my inflammatory disease was followed by gallbladder removal the following summer.  Experiencing those illnesses brought me spiritual growth.

I recently read Kathleen Norris’ wonderful memoir Acedia and Me. While the book mainly focuses on the detrimental effects of acedia, the book is also about her husband’s debilitating cancer and ultimately his death.  I feel she is one of the great spiritual writers in that she lives in our world and relates traditions from monastic life to our hectic world. It makes sense that some monastic practices can feed us. I also agree with Norris that illness, pain and grief can serve as sources of inspiration and clarity. My own health challenges over the years have given me clarity about my life, purpose, passions and faith . I could not have reached certain conclusions about my values if I had not been ill. I sometimes forget I have been hindered in the past so this mystery illness worried me. I don’t ever take my health for granted

When I began to experience joint pain, I could have easily decided to sit on my couch and treating myself with  Biofreeze or ice packs. Instead I powered through and went to bootcamp. It was a struggle; I couldn’t push myself as hard as usual. Eventually the swelling subsided. My joints got better. The patron saint of joint pain is St. Albert so I can add his name to the litany. Whatever illness I experience I give over to God. I can transform illness into inspiration.

Seatbelt fastened

“Fasten your seatbelts. It’s going to be a bumpy night.” Margo Channing in All about Eve

My latest IGM flare-up has been an emotional roller coaster. After my initial worry and the subsequent sense of acceptance, I began to experience anger. It began as a slow simmer while at work.  By the time I came home from this week’s biopsy, I was livid.  I was angry at the physical pain. I was angry at my body and its apparent ongoing weakness.  Mostly, I was angry at the behavior of certain individuals who conduct themselves with negativity, rudeness, and disrespect on a daily basis; I straight up questioned why they are well. I even said I could punch a specific person.
If Rambo hadn’t been present, I might have thrown a few things.  But those moments pass.
Then there was the waiting. It has been so hectic at work that I haven’t had the time to dwell on the possibilities. Once that call came through (of course it had to happen at work), there was the relief.  I am still cancer free.  But I still have an infection so the journey to healing continues. 
Faith is a must as I handle living with a chronic illness. One of my samba sisters had issued a Bible verse challenge nearly a week ago, a day after I discovered the lump. Every day I have shared a Bible verse on social media. These particular verses inspire hope in me while I reflect on my personal experiences. It has been a practice that has helped me focus on the positive.
One of the positives was meeting my new specialist. My previous specialist, known as the local expert of IGM, retired. Fortunately, I was able to get a Tuesday afternoon appointment after my Friday morning call. I rescheduled due to having the biopsy to Friday afternoon, always a good day to get good news. He is of the opinion that the infection I have is simply that and is not necessarily a flare-up. He did not recommend an additional round of antibiotics and is confident we can avoid invasive procedures this summer. He also said I could resume exercise so long as I stay aware of discomfort and pain.

My health may present occasional challenges but la vida continua(life goes on.) I had already planned to have my gall bladder removed in a few weeks so that will happen(see previous blog at June is full of M’s dance performances.  Carnaval with SambaFunk continues through various celebrations. As I was once told by King Theo, healing is mine! 

The other shoe drops

I suppose I forgot. With all the glitter and feathers and glorious, glorious purples all around us, I was lulled into forgetfulness. But that 20/20 hindsight soon kicks into high gear, especially when you’re waiting for an hour or more in a waiting room or examination room, and then I remember the clues. The twinges of pain Sunday morning and Monday morning. The low energy which I thought was a symptom of a ressaca do carnaval(post-Carnaval “hangover”, quite similar to the post-race blues I experience after half-marathons). The inability to sleep on either side without discomfort Thursday night worried me most. Friday morning it became all too familiar. 
I am so in tune with my body now that I know when something has shifted. So in saying I forgot, I have not forgotten that my health must come first. I remember to take my daily pills. I know to call the doctor as soon as I notice something. I know to take the earliest appointments. I remember the pain and its accompanying emotions; I can admit I purposefully let go of my memories of those. Now I accept them. I let the tears fall, if only in the safety of my car in the hospital parking lot. I ask the questions of God and my body, if only in my head.
Since my last relapse, I have learned how to better manage my illness. Through the work I did with M’s wonderful counselor, I know to keep any negative emotions or serious conversations about my health private, shared only with Rambo or other adults. In terms of my physical health, I know the next steps well and can mentally prepare myself for the physical discomforts that may result. I know to pray and pray some more. I know to ask for prayers. 
This morning, I registered for my 16thhalf-marathon to be done this November. Because I know to move forward.  

Yes, another acronym


The morning after Valentine’s Day, I had finished my morning cardio workout and was going to head into the shower when Rambo (the artist formerly known as Blues) gripped me in his viselike bear hug.  I finally managed to escape and mock-whined about the pain he had caused. But as I got ready for my shower, I did notice twinges of pain.  I did a self-exam and found what felt like a small, hard mass. With heart pounding, I returned to our bedroom where I asked my boyfriend to confirm my suspicions. Yes, there was a lump. Yes, it was painful.  I immediately called the advice nurse and I was booked an appointment with the breast clinic. My surgeon felt it was a benign cyst but I would still undergo a mammogram, ultrasound, and biopsy.
Due to my hectic work schedule and my usual desire to power through it, these tests were delayed by about a week. By then, what was a tiny lump became increasingly painful and swollen. I began to experience a low-grade fever.  Life went on as usual, despite my overwhelming fear of breast cancer and my overall fatigue.  To complicate matters, the biopsy site became infected and after two rounds of antibiotics, I had to undergo an incision and drainage of the abscess.  I was back at work the following day despite the pain, with antibiotics and gauze dressings in tow.  By then, a second surgeon had been consulted and I first heard of IGM, idiopathic granulomatous mastitis.
IGM is a rare disease.  It is similar to mastitis which affects nursing mothers. The I in IGM means “I don’t know.” Researchers have yet to pinpoint the causes. Some women with IGM, like me, nursed their children between two to six years prior to experiencing symptoms.  Some may not have had children at all. It’s an “I don’t know.”  What is known is that IGM is a chronic condition like gout or arthritis. It won’t respond to antibiotics because it’s not a bacterial infection. It is an inflammation of normal tissue which can flare up. I had done some online research but I hadn’t yet been given an official diagnosis. There were plans for a possible lumpectomy if the symptoms didn’t clear.
I had stopped dancing with SambaFunk because of the pain of infection. However, as soon as I could after my first outpatient procedure, I was back in class, bandaged but determined to prepare for Carnaval. I resumed exercising daily.  Work had never let up so I continued to balance the various demands on my time. Every day, I changed my dressings three times a day.  Every day, the wound was not healing. Though my biopsy had shown no sign of cancer, I worried about my immune system. Was I pre-diabetic? Was something wrong with my white blood cells?   I checked in with my surgeon via email and by phone but I failed to demand to be seen again. Follow up appointments were rescheduled and canceled. I was too focused on my work obligations to put up much of a fight.
The weekend before I was due to leave town for a school accreditation visit, I noticed pain in my ribcage after my morning workout.  Upon inspection, I realized the pain was radiating from my original wound.  I called the advice nurse.  She booked me an appointment with an emergency room doctor.  That doctor took one look at my wounds and said she needed to call my surgeon who happened to be in the OR on a Sunday afternoon.  When she asked that I be transferred to the ER as a high priority, I knew I wouldn’t be leaving town. My surgeon, dressed in OR scrubs, came to see me and said I would be undergoing emergency surgery the following morning.
The good news is I don’t have cancer or diabetes or any other major illness. I came home on schedule Wednesday evening.  I was placed on medical leave for four weeks and I have been wearing a Wound-Vac machine 24/7 since the day after my surgery.  I am now being treated for IGM with anti-inflammatory meds. For the first time in months, I am not living with an infection.  I miss dancing and exercising but I know that soon my body will heal and I can resume these activities.  More importantly, I’m finally taking time for my health.