A-ha Moment #47

Who knew that symptoms of an anaphylaxis response can include uterine (and bladder) cramping?

Not me. Until yesterday.

I’m still suffering through subcutaneous allergen immunotherapy (4 of my 6 worst allergens, the 5th and 6th aren’t effectively treatable by subcutaneous immunotherapy or there are no serums available to do the job plus the more you dilute the components by adding in additional serums, the less effective the therapy is likely to be). I’m still getting weekly injections and my local Immunotherapist has slowed the progression with each of the 3 vials that form my treatment protocol to get to a “maintenance” dose.

I’m nowhere near maintenance dosing yet. Progress has been very slow, with deliberation, to avoid anaphylaxis as I’ve had what my Immunologist describes as the most severe local reactions she’s ever seen in a patient (and she worked in a hospital treatment program for very severe allergy treatment/control for years overseas – so I guess I’m extra special in that respect – boo!).

Yesterday I was fine immediately after the shot. I have to wait in the office 30-60 minutes (we’ve been back down to 30 lately though I am wondering if Doc will change that after this week?). Throughout the wait I have to ice the injection site. I also have to drug before and an hour and a half after the injection to reduce the severity of my reaction. I did both.

Within an hour after leaving Doc’s office, I had these crazy uterine cramps – bad cramps! – and was thinking I might be getting the monthly visit early. Nope. My nose began to run. My throat started swelling and I began coughing. And coughing. And coughing. It was harder to breathe and I wasn’t doing anything strenuous. I took my asthma control medication and the second drug to reduce reaction. And I wondered whether I should take myself to the hospital or call my Immunologist.

I did neither, but I did take medication and call the LP and tell him what was happening. He agreed to meet me, we had some lunch (sometimes food can calm my reactions, especially warm food). I had a small bowl of vegan soup. The throat swelling and coughing began to subside. I started sneezing and the runny nose continued and my arm had swollen up like a football, but no more “systemic” (anaphylaxis) symptoms. I packed in the worry and went back to work.

I can’t say my focus was sharp for the rest of the day, but I hung in there. Last night I couldn’t sleep and did some reading about symptoms of anaphylaxis in case there were others than the ones I’ve had before (throat swelling, difficulty swallowing, trouble breathing, chest tightness).

That’s when I discovered that those crazy cramps could have been part of my body’s response to being routinely poisoned weekly in the hope of calming my overactive immune system.  Who would have thought?

I will mention all of this to my Immunologist next week of course (even though I fear it means she’ll keep me the 60 minutes again from now on), and see what she says, but in the meantime I wanted to share here in case anyone else is prone to allergic reactions and has cramps along with other symptoms – it can be an early warning sign of an anaphylaxis reaction and a cue to get medical help if you don’t carry an epipen (I do) or work very near a hospital like me. (Also apparently I like to play fast and loose with my health – gah.)

PSA over.

Now back to our very irregularly [un]scheduled programming.

I miss ya’ll. Been busy with kidlets, work and getting back to some self care (I’m running and I did almost no work while on vacation recently – unheard of!). Ta da!

 

 

 

 

Parenting is hard

Trite. I know.

But it’s true. And isn’t truth the bedrock of all things trite?

I have never been more humbled by my failings, my oversights, my impatience, my every imperfection than I am as a parent.

Being a litigation lawyer with very demanding and difficult clients, weasel-like opposing lawyers and fallible adjudicators is easier than being a mom.

Hands down. Any day of the week.

And therein lies the beauty and the rub of this exquisitely challenging and amazing role.

That is all.

Sick

I have not been so fraught with symptoms of immune activation and distress since about April 2013 – after our third straight miscarriage in about 5 months and before the final three). 

At that time I could barely eat anything without my throat swelling, my IgE levels were ridiculous and I looked like a racoon from a severe case of allergic conjunctivitis and excema all around my eyes in reaction to I still don’t know what (other than the pregnancies – that was then and remained the common denominator for my immune system going haywire). 

I’ve been doing immunotherapy to desensitize my immune system to three of my worst everyday allergens and one seasonal one for the last 6 weeks. 

I am constantly getting sick, feel more exhausted than I thought possible and the depression is sneaking back in. I’m super stressed because there is so much to do at work and home and I’m operating at far less than full capacity thanks to the allergy therapy. My sense of failure is omnipresent. 

I know in the end this is supposed to make my life better. But right now it just sucks. 

So much yet to do

I attended a mental health event last night. I’d bought the LP a ticket too. The keynote speaker told the stories of her childhood and adult life immersed in mental health conditions, mental illness, addictions. Yet she worked so hard and, ultimately, achieved unimaginable success. Still, the mental health issues are a part of her life and inform the healing path she walks.

The LP and I stared at each other afterward.

“What did you think?” I asked.

“It was good.”

“Yes” was all I could manage. Then, “she is so intense.”

“But it hit pretty close to home.”

Wham.

Just like that, he nailed it.

And for over an hour now, since first waking up this morning, all I am capable of doing is weeping. My heart is aching. My head is swimming. I feel broken, sad, invisible. Even now.

Then it hit me.

I have so much grieving yet to do.

So much healing.

So much.

Bad Dreams

Both the LP and I grew up having bad nightmares (the LP night terrors). He still lets out blood curdling screams while still dead asleep and embroiled in nightmare sometimes. My affliction worsened – severely – after Baby A’s birth and I was later advised they were symptomatic of PPA (postpartum anxiety, related to and sometimes experienced together with post partum depression (PPD) but sometimes experienced independent of PPD). 

While Baby A was still very young I was offered medication not recommended while breastfeeding. I declined. Breastfeeding Baby A has never been easy so I opted to ride out the daytime anxiety, for which I had some tools in my arsenal, and suffering through the nighttime anxiety, for which I’ve never found tools apart from the training I got after a brain injury that triggered a flood of childhood sexual abuse memories and corresponding nightmares. 

Most of the PPA nightmares involved drowning – of my dog and my children mostly though occasionally of other people’s children. They knocked me flat. Every time. I never went back up bed or sleep on the nights when they struck. 

The MT seems afflicted with the nightmare gene too. He says almost every night before bed “I hope I don’t have a bad dream”. “Me too” I always respond. I hope not too. And then I make the same wish for myself and the LP. 

Wishes are just that. Obviously. Sometimes they come true (like dreams). Sometimes they don’t. 

Early this morning I awoke from a bad dream that was muddled and disjointed. I only recall that it ended with Baby A being struck (and dismembered? I made myself wake up and cannot take my mind back there) by a vehicle while I ran out (in slow motion – why can we only move in slow motion when something awful is afoot?). The fear and gore took my breath away. And got me out of bed. Immediately. 

If I had to live with these sort of nightmares again often (as occurred for a while after Baby A’s birth) I would readily drug myself into a stupor. I would wantto eliminate any opportunity to recall such horrors. 

I sometimes wonder how parents of violently or tragically killed children survive. I have often wondered (still do) how my own mother survived after her first born son died – in somewhat suspicious and utterly tragic circumstances. I know she struggled mightily. For ever. His death shaped my childhood. And has resurfaced from time to time my entire life. 

On that note, is it moot to describe such circumstances as utterly tragic? When is the death of a child not utterly tragic? In the case of my mom’s son the tragedy – for me – is amplified by the fact what happened could readily have been avoided but for the foolish or perhaps malicious acts of another. And that the other was himself a child. From tragic circumstances. 

I digress. 

I don’t know why I’m writing this post except to exorcise the demon of this morning’s awful dream. I hope I don’t have (any more) bad dreams. 

Do you ever have nightmares about your children being harmed? How do you reground yourself after them?

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.