Mindful Immunotherapy?

After years of waiting and a ridiculous sequence of pharmacy and serum lab screw ups that started in September 2016, I began immunotherapy yesterday. In consultation with my local immunologist I opted to begin a process likely to span approximately five years by addressing my four worst allergies first. 

The dose is very dilute in the first series of injections – 1:100. I have talked to many other patients who didn’t notice a reaction at all during their first vial (which typically requires weekly injections for several months to a year).  I was expecting something similar. 

Round one was – to my surprise and disappointment – remarkably uncomfortable. I immediately began to itch fiercely at the injection site. The itching spread and it took all I had not to scratch. By the evening (8 hours later) I had a very large welt in the shape of a large parallelogram as wide as my palm,angry and red, curling around my left arm. 

Worse, I started coughing before long. Thankfully, my immunologist is very cautious and gave me both a second antihistamine (the second generation, water soluble variety so I would not be drowsy or foggy headed) and the steroid inhaler she has me on to take in the clinic. The coughing subsided and I had no throat swelling. 

But still. Not a good start to the most innocuous of beginnings. My left arm is still unnervingly itchy more than 24 hours later. Thankfully they alternate arms each week. 

Catching up on my friend MLACS’ posts yesterday I mulled over her comment about how a damaged mind body connection can get in the way of healing. I know that to be true and started thinking about how I could engage mindfulness as I embark on this new journey to [ultimately] tame my occasionally rabid immune system. 

I’ve decided to befriend her. My immune system. I will coax and encourage her and remind her what a long way we’ve come together and how much I need her and care about her well being. I am doing this for her. She deserves a rest. We both do. The waters will be rough again before they calm and the sailing  is smoother. But together we can – we will – do this. 

So. That’s my mantra going forward with this therapy. We can do it. Me and my immune system. We’re making peace and moving to a calmer place. One syringe at a time. 


To the woman in the Ikea parking lot

You stopped me as you pulled out from your parking spot to applaud my parenting. Bewildered, I barely managed “thanks”. You told me I’m doing a great job and to keep doing what I’m doing. 

Now, reflecting on your random act of kindness, I am sufficiently moved to feel my eyes burning. 

I needed that more than you’ll ever know. 

Thank you. 

Mental unwellness

Do I need to see someone? My golden rule in a past life free of children and the dark abyss that (to me) represents the private practice of law was that if ever I asked myself that question the answer ought to be an unequivocal “yes”. 

I mourn things daily. The short list includes:

  •  Sleep. I wake up between 3:45 and 4:00 AM to get some housework and billable work done before I get kids and self ready and off to child care provider and work. I almost never get to sleep before 9:30 and almost always wake up at least 3 times, often for at least an hour. Sleep deprivation has stolen my soul. 
  • Romance. By which I mean thoughtful tenderness as much as any physical intimacy. What the [insert obscenity] is that again? The LP and I barely see each other and he is the most negative human with whom I carry on a relationship. 
  • Kindness. The MT is whiny, shouting or manipulative about 50% of his waking hours. I hate 4 going on 5.  The LP wallows and is negative. Baby A has started hitting and throwing (thankfully the biting is more limited than it was with the MT at this age). Some moments are amazing. The rest kill the amazing. I grieve this deeply and feel like I must be a huge part of what I am calling the problem. 
  • Time. Where did that [insert obscenity] go?
  • Breastfeeding. It used to feel like bonding time. Now it feels like bondage. I am bitter and hateful as much toward the LP for not helping with the night waking and the persistent will of baby A to maintain an all night nurse and nap bar. It is time to wean – in breach of my promise to myself to nurse until 2 or whenever. But the LP is too busy with work to take part in this either so it’s not happening because at some point I cave every night when I can’t imagine the next day with even less sleep. Baby A has my tenacity if nothing else.  
  • Love of the law. Yes I mourn that. I would do anything to leap out of this profession and do anything but. Private practice and firm leveraging, misogyny and lies have broken any spirit I once had for the law. I’m so over firm life. I overcame a significant disability (brain injury) to complete law school and watched my mother diagnosed with stage 4 cancer, get sick, have surgery and lengthy treatment, get sort of better, then sick again and die while I kept my promise to her to finish law school and my two articles. Then she died weeks before I was admitted to the bar. What was the point? More importantly, what *is* the point now? I cannot see it. I feel as though my law firm and practice are the biggest joy thieves in my life. But maybe I’m just making excuses. 
  • My marriage. I don’t even know what to say. I just feel broken and lost. Or that it is lost. And without a soul who cares enough or has had enough sleep or kindness or peace to bother trying to salvage it. 
  • Financial security. And the fear debt brings. I never imagined myself saying this. I’m generally mindful and try to be careful. But I’m not single. And I didn’t see infertility and recurrent pregnancy loss or the costs of cross-border “investments” in the circumstances coming. Gah.

Writing this I suspect I not only need drugs and therapy but a new job. And I’m not the only one. 

On that delightful note, happy [insert obscenity] new year. 


As the LP and I were driving to pick up the boys from their care provider yesterday we heard an ominous thud on the passenger side of my vehicle shortly after I turned a corner onto a busier two-lane residential street.

I stopped. I looked behind me. A blonde mid sized dog – looking terrified and hunched over – was standing up in the middle of a fairly busy residential street. Cars were coming in both directions. She was frozen, the proverbial deer in headlights. The cars stopped. She began moving. I pulled ahead so I could stop my car safely off the road and immediately ran back.

I had not seen her. Nor had the LP. She hit the vehicle on the side, though there is no damage to the car.

When I ran back I saw a man in a big pick up truck with a mixed breed dog in the back seat with his window open. I asked if the dog was his. She was.

I burst into tears and said I was so sorry, we had not even seen her coming. He said “I know. She got off her leash. I know.”

He asked me to wait right where I was and see if she came that way. I said yes and remained stationed there. I also looked in the yards nearby. The man returned on foot, calling out a name. I asked him how I could best help.

He told me her name is Flash and his wife had seen her go into the alley behind the street where she was hit but then lost her.

On foot, I looked up and down alleys, side streets, in yards. The LP drove around looking as the man had told me Flash would never come to a male stranger but might come to a woman. Eventually I sent the LP to go get our kids. I kept walking, calling, searching, pleading for mercy and a positive outcome for poor Flash. I prayed and I begged: God please let poor Flash be okay. Please.

I never saw Flash again. After about an hour, when the LP had returned and driven around some more and reported he could not find the couple who had been on foot looking for her, the LP convinced me they must have found her and we should go home.

I cried the entire drive home, most of last evening and over night when I could not sleep. I remain a hot mess, stuck at work with my door closed and a pool of mascara on each cheek after having called all of the emergency vet clinics and even the vet clinics near that area that were open late enough that they might have taken Flash there. The staff at the front desk in each of those clinics were very kind. None had taken in a dog like Flash last night.

I’ve revisited the scene in my mind over and over again. I have played out countless “what if” scenarios, all of them agonizingly open ended as I have no idea what happened to poor Flash.

I do not know what else to do. Nor do I have any idea how to make peace with any of this.

The LP keeps reminding me it’s not my fault, I was not driving fast, I was not acting negligently. But that is not the issue. I was in an accident in which someone’s beloved pet and family friend got hurt, maybe died. I have no idea if Flash is alive or dead. Or how I could help, if at all.

What I have is a mess of feelings and thoughts I can neither reign in nor erase. With a heavy heart I continue to pray for Flash and her family. Above all I feel lost.


At 4:26 AM…

The Miracle Toddler (now preschooler) leapt out of bed and dashed to the living room where the evergreen tree he selected some 3+ weeks ago is decorated (largely by him, with “assistance” from his 18-month old brother). 

The house was dark save for the white lights in that evergreen and the single string of rainbow coloured lights rimming the top of our living room window. 

Mom? he whispered. 


Did Santa come?

I don’t know. Did he?

He ran back to check again: I think Santa has been here Mama!

And so it began. Miraculously we got him bask to sleep.

Until 7:11…

Losing my Mother 

I lost my Mom almost 11 years ago. I have missed her throughout that time but more so since becoming a mother (the first time I got pregnant in 2010 which led to my first loss in 2011). 

I started this post two mornings ago after I awoke from a nightmare in which I watched my Mom dying. 

The dream was not a replay of how she actually died. In reality her heart gave out after her cancer returned and she refused any further surgeries or radiation. She was not eligible for chemotherapy due to the damage to her heart from the first round of cancer, surgery in which her heart stopped, and 6 weeks of daily radiation treatments. 

In the dream her heart gave out too. But for different reasons. She had suffered a devastating fall that broke her neck and paralyzed her from the neck down. She was naked and terrified. The paramedics were there first and wouldn’t let me near her. 

Finally I got in her line of sight and I didn’t do any of the things I wished I had. I didn’t do anything right. I cried. I was scared. I was too welled up in my own grief and fear to be her anchor and help her find peace before she left. 

When I woke up I was so upset. I couldn’t stop crying and didn’t even understand – don’t fully understand now – what this dream was supposed to teach me. I just sobbed and begged my Mom not to come back to me like this and asked her why, why come back to me this way? Why now?

I could not stop replaying the scene in my head. I catalogued everything I could have done better. I felt crushed by my helplessness and the sense I had let my Mom down in her moment of deepest vulnerability and need. 

There was a time when my mother was alive – before the cancer – and she had fallen after her fist hip replacement surgery (which the lead surgeon botched, resulting in my Mom being limited to only non weight bearing activity, which means no standing indepedently even for transfers to a toilet or bed). I was staying with her to take care of her but had been at work for a few hours. 

When I returned I heard whimpering and ran to look for her. I found her on the bathroom floor, crying. I had never seen her cry before. Even when her closest family members had died. She may have cried then. But not in my presence. 

She said “I don’t want to live anymore” in an almost inaudible whisper, her voice hoarse with tears and shame. I held her in my arms and rubbed her back. 

I felt myself stop breathing. My Mom needed me to see her and honour all she had lost in that moment. It hurt with all my being to hear her, see her as she felt then. But I knew what to do. And I did it.

“I know you don’t” I said. “I know.”

All I wanted then was the power to draw every ounce of shame from her and replace it with the dignity that the disastrous hip surgery had stolen from her. I wanted to make her whole again. To give back her sense of self worth and independence. 

I wanted that in my dream too. When I saw my Mom naked – wild eyed and immobilized on the ground – snd surrounded by strangers I wanted that. I longed to be her truth, her anchor, the sense of humanity and dignity she clearly feared she had lost. I wanted to help her tame that mounting fear. 

In my shock and grief I could not act upon those desires. I was unable to summon the compassion and quiet calm she needed. I could not restore her dignity, chase away her shame or bring her the peace I so longed for her to have before she left us. Before I had to say goodbye. Again. 

And my heart shattered anew. I don’t have words for how painful that dream was and still is. I even find it hard to type this for the tears burning my eyes and cheeks. I have taken many breaks to wipe them away and ride out the shuddering sobs. It feels like grieving my mother’s departure all over again. Or maybe it is her absence I am grieving now?

I have persisted with this post because I want to document the dream and my memories somehow. I need to write it out to help me make peace with myself and in the hope of someday making sense of it all. 

I wish I knew what that dream was supposed to teach me. I only remember dreams that are either meant (in my belief) to teach me something or to illustrate a deep seated fear with which I have not come to terms (e.g., my kids drowning). 

I awoke feeling and continue to feel that there is something I am to grasp about myself, my life or my parenting in all of this. I don’t yet know what that something is. 

I do not know many mothers of young children who have lost their own mothers. I can only think of one. And we don’t talk anymore. I wonder if all of us struggle after our mothers’ deaths like this. I wonder if this is simply how I process grief. 

I wonder what I am supposed to take away from all of this. Perhaps most fundamentally an awareness that I am not done grieving the loss of my mother 11 years later?

I suppose I’ve also learned that I may never be done grieving the loss of my Mom. There are other losses I likely will never stop grieving. Contrary to the platitude, time does not heal. Yet it does soften the edges of grief. Most – clearly not all – of the time. 

If you were close to and have lost your mother, do you have dreams about her? Do they ever challenge you and, if so, in what way?

Stevens Johnson Syndrome

A few months ago baby Azulito had an infection arising from an eruption cyst. I learned that such an infection is rare among properly nourished infants and toddlers. 

Then baby A had a severe reaction to the Amox.icillin (a member of the penicillin family) he had been prescribed for the infection. The ER doctor at the Children’s Hospital said penicillin allergies are “relatively common” and gave baby A steroids and the name of an over the counter second generation (non drowsy) children’s antihistamine. 

We gave baby A the antihistamine daily for the recommended 7 days. It didn’t seem to do anything after the first 48 hours when it did seem to stop the rash from spreading or looking as rash like. But it did nothing to abate or improve the fiercely red, scale-like welted tissue on our baby’s feet, legs, arms and back. At one point I told the LP it looked like Baby A had suffered a chemical burn. It took almost a month to clear up. 

During that time I happened to have a previously scheduled appointment with my immunologist. I mentioned the ER visit. She was alarmed. She asked if she could refer Baby A to a paediatric immunologist. I leapt at the invitation. 

Despite the 1-2 year wait times for paediatric immunologists where we live (one of the shortcomings of our public health care system where queue jumping is prosecuted) baby A got an appointment within two months. 

At the appointment we learned about a new immune condition. Stevens Johnson Syndrome. I had heard of it but knew little about it except that children have died from it in litigated cases in the U.S. 

The doctor thinks what Baby A experienced was an early onset of Stevens Johnson and not the “relatively common” penicillin allergy we were attending to discuss and possibly run a drug challenge to confirm some years down the road. 

Stevens Johnson is a rare, serious immune-mediated hypersensitivity  complex. It primarily affects skin and membranes. It can also cause loss of sight and other tragic complications and in severe cases death. 

Stevens Johnson often results from drug reactions but can be triggered by other substances. In medical terms it is “a toxic form of epidermal necrolysis”. The chemical burn-like appearance we saw in baby A is one of its hallmarks. 

It is not safe to run a drug challenge with anyone diagnosed with or suspected of having Stevens Johnson. In Baby A’s case, his reaction was bad but enough but not as severe as many SJ cases. But most SJ cases occur in persons who have been exposed to the triggering substance before. 

Baby A had never been exposed to a penicillin type drug, not directly and not in utero. So his reaction is considered severe and any re-exposure very dangerous. 


I had believed and hoped that this child would not have my allergies or asthma or other immune problems. I did not see this coming and have been humbled and terrified by the diagnosis. 

Baby A now has to wear a medic alert (there’s a fun thing to strap around the wrist of a small toddler!). And we have to make sure he never (ever) gets any of the penicillin family of drugs or those that the human immune system sometimes mistakes for that family. 

This has been a sobering development. 

All in all I consider us incredibly lucky. Unbelievably lucky. And for that I am deeply and truly grateful.