Worst Birthday Ever

The day before my birthday (in early September) I spent 8.5 hours at the emergency after 45 minutes with my usual eye doctor who could not stop my eyes from seeing double, occasionalily triple and more. My optometrist said he was fairly certain it was neurological and told me I should go to emergency at the local hhospital where eye emergencies, surgery and specialist care are handled.

Sure, he isnt an MD. Still, I started to cry. Then I got a ride to ER.

The wildly blurry, nausea and anxiety inducing vision changes started after I caught some virus that made my head hurt so badly I could not get out of bed and took gobsmacking doses of painkillers for several days. I had never had such bad headaches except quitting caffeine and these were way more intense.

The ER doctor of course had no idea what was wrong with me and chastised my optometrist for sending me to Emergency instead of calling an Ophthalmologist. I nodded, not explaining that the optometrist had said if he referred me I’d be waiting weeks at best, even on an urgent referral.

Ah, public health care. Time sensitive it does not do well. (More on that below.)

ER doc made a call and gotvme an appointment the next day with the on call Opthalmologist at the specialist eye clinic in the same hospital.

In the Uber on my way to that appointment the next morning, my driver asked why I was going to hospital, visiting someone? I said no I have to see an eye specialist. He asked why. I said, simply, I have double vision.

He immediately described symptoms that sounded identical to mine after having said that he once had terrible double vision all of a sudden. I asked if he saw a doctor. He had. I asked what had caused it. A stroke, he said, but he had no other symptoms. His double vision cleared up in it’s own a week later.

I’ve had this for about a month now. It got progressively worse over the first week and hasn’t changed much since.

It is neurological, said the Ophthalmologist after many tests and various visits from an Orthoptist and another eye clinic technician whose title I forget.

He referred me for a CT scan of my brain and orbitals (eye sockets), although he has since called me to tell me: (1) I have a CT scheduled for March 2020 that he is trying to get changed to October); and (2) that an MRI would be bbetter but he referred me for CT because the wait for MRI would be even longer. I’ve asked about paying privlately. It is complicated but last week he said we can look at finding a private neural-radiologist if he cannot get an earlier date than March 2020.

Meanwhile… 6 hours into day 2 of my tine spent at hospital earlier this month, I was given (and have to pay for) and still have a fresnel prism in the right lens of my eye. This is a plastic film with dinosaur-like ridges or lines that create a prism to help my brain see one image blurrily but not 2, 3 or more. The Orthoptwist at the eye clinic in the hospital installed it after the Ophthalmologist told me:

(1) I have a partial palsy (paralysis) in one of the six nerves connected to my right eye and mild strabismus, in both eyes but worse in the right one; and

(2) I need to take a low dose aspirin every day until we know why.

I immediately asked if he suggested the low dose aspirin because he thought I’d had a stroke. He said “we can’t rule that out so until we know you should just take it.”

Between the hospital and my regular doctor, Multiple Sclerosis, Myasthenia Gravis, Diabetes, kidney disease and hypertension have been ruled out. Stroke (transient ischemic attack or mini stroke, to be more precise), aneurysm, tumor and other brain injury are still on the table as potential causes. I’ve had no recent blows to the head or other head trauma.

When the lab technician at the hospital who drew my blood after this news was delivered (to check kidney function and rule out kidney disease causing stroke, if I understood the Opthalmologist correctly – I was pretty stunned by then) wished me a happy birthday, I burst into ugly tears. His distress – like my own – was palpable. It had been a really bad day.

I have been struggling. I cant drive safely as I cant see well and my brain gets tired trying to do so. I am scared. I had requested mental health support. It would be an understatement to admit that doing so has not been a good experience.

At one point I considered how great it would be if I could do graduate research and a thesis on how the medical profession in my country and maybe others renders professional, articulate women invisible. If you can explain clearly and haven’t fallen apart completely yet, you must be fine.

I hope to find out this week that I either have a CT scan booked within the month (which may lead to a MRI r down the road) or a referral to a private, competent neural-radiologist for a MRI and report to be paid for at my own expense (I have been told my insurance likely wont cover that cost).

I am trying to stay afloat. That is as good as it gets for now.

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.

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. 

Hiccup?

As of yesterday, I had sorted out my dilemma of what to do with my spiralling mental health, no doubt a by-product of my spiralled physical health and the 6 miscarriages we’ve undergone since March 2013 in our pursuit of living child number two.  The decision I’d reached was to make no major decisions except to embrace life, try to live in the moment, restore my health (physical, mental and financial) and the proverbial “wait and see.” 

Today, I have had some adventures:

1. I woke up with cause for celebration – I am bleeding heavily.  The old menses has finally arrived, only delayed a few days by the 60 mg of Prednisone I’ve been on for 5 days to combat my immune system flare-up.  I’m relieved, it did not feel good to have a womb full of blood that wanted to escape and was being held captive past its prime.

2. Despite the heavy outpour of blood, I actually feel lighter of spirit (and body, thanks to the blood-letting, no doubt).  I’d swear I were miscarrying, this is super heavy bleeding.  Sorry for the too-much-information confessional.  Most of the day later, I still feel lighter of heart, but for the few forays into unadulterated rage and forehead-smacking (keep reading).  I guess hormones were not helping with the depression that was sinking in a couple of days ago when I penned my last post.

3. I lost my head and launched into a tirade at the LP for neglecting to deal with laundry in any form of civilized fashion.  In my defence, his only responsiblity was to put away what was already washed and folded and to carry to the laundry room the mountain of unmentionables he’s been hoarding (apparently for the past 14 months or so it might appear to the untrained eye)

4. I discovered that letting our two-year old practice “driving” meant my vehicle’s battery was stone-cold dead and required me calling the automobile assocation, which required me to pay over 200 clams for both the LP’s and my annual memberships because someone had neglected to pay that since it was due on March 31, 2014.  No names mentioned (hint: he isn’t two).

5.  I signed up for a new gym membership and I start kicking my own butt tomorrow.  Yay!

6.  I spent some time quietly sipping tea and looking forward to camping with the LP and our Miracle Toddler (also known as Car-Battery-Killer).  I gave or threw away all of my camping supplies when we moved a couple of years ago because the LP “is not the camping type” (read: “wasn’t the camping type” – he has agreed to give this a bona fide effort).  The Car-Battery-Killer and I ahd fun yesterday picking out some new camping equipment  as part of the newly hatched plan to live in the moment, restore mental, physical and other health and forget attempts-at-baby-making-as-lifestyle for the immediately foreseeable future. 

7.  I got a couple of e-mails with advice from our RE.  

*Hiccup!*

So, the RE was thoughtful and careful in his responses.  The key points are below:

A.  The immune flare may be the cause of my TSH more than doubling since a year ago.  It’s always been well under 2, it was 1.55 last June and it was 3.17 this June 24th, 3 weeks after our most recent miscarriage and in the midst of my autoimmune symptom hell that led to the current Prednisone protocol. 

B.  Meds to lower TSH take 3-4 weeks to take effect so the RE recommends I start now.  Okay…

C.  The RE accepts that immune factors appear to be at play for some women (present company included) in assisted reproductive technology (ART), recurrent pregnancy loss and/or infertility (primary or secondary), even though the subject is hotly contested within the ART community and has not been accepted by the American Society of Reproductive Medicine (ASRM).

D.  With the exception of some established autoimmune conditions (none of which I have been diagnosed as having) and their respective protocols, the testing and treatment for suspected immunological factors such as natural killer cells (NKa) and HLA-matching are not recommended by the ASRM and lack convincing, reproducible data.

E.  Typical “immune-modulating” interventions include intra-lipid infusion, IViG and steroids.  Again, the RE maintains, these lack convincing, reproducible results and are not recommended by the ASRM.

F.  Although in his personal opinion, immune factors “probably play a role in some cases”, he acknowledges that “our ability to identify and treat is lacking.”  This will likely change in the coming years, but that does not help me and others like me now or in the immediately foreseeable future.

G.  The RE sees a potential “window of opportunity for embryo transfer” of one or both of our remaining two frozen blastocysts “shortly” after I conclude my current course of Prednisone (I should be done treatment in the third week of July), when hopefully the antibody levels (IgE) have returend to normal.  I asked for clarity on the RE’s definition of “shortly thereafter” but the best I got was a sense of it being in the month or two after I end the steroid treatment (and that’s more my inference than him spelling it out).

H.  The RE is open to using intra-lipids pre- and post-transfer (if successful) and a sub-cutaneous injection of hCG before transfer but NOT further use of steroids during the transfer cycle.

I.  The RE is also not in favour of using an intra-uterine injection of hCG at the time of transfer on the basis that it is primarily aimed at assisting women who fail to develop an adequate uterine lining (which is not my issue, he said) and because he is concerned about placing excess liquid in the endometrium because “it may be a conduit for embryo movement.”  There are some docs who suggest that the intra-uterine injection is also targeted for women with known or suspected immune issues, but I have not raised this and frankly the research on that appears limited and as our RE would say, “lack convincing, reproducible data”.

What does all of this mean for my plan of taking a break from all of this baby-making madness for the rest of summer and maybe longer?  I have no idea.  Do I agree with everything he’s said?  I don’t necessarily disagree, I have some anxieties but I’m letting them go gently right now.  And I plan not to think about the what-ifs beyond having blocked off dates in the LP’s and my respective work calendars in case we decide to take advantage of the “window of opportunity”, should my gut tell me it’s the right thing to do in one of the coming few months.  For me, right now, that is plenty.  I am not committing to any dates right now.

Rather, I plan to press on with the plan to live and rebuild our lives, be in the moment, and go camping (first in the backyard – we need to break in the Miracle Toddler and possibly the LP, after all).  I also plan to call my doctor tomorrow and accept her offer to prescribe me a low dose of thyroid medication to bring my number back under 2.  I can live with that.

It is time to live and to be.  Alive.  Alone.  Together.  Here.  Now.  And whatever else happens?  Well, it will happen as and when it is meant to happen.  This hiccup is not derailing my plan to embrace the life we once had and enjoyed.  I want that back, no matter what else happens.