Mid-meds check-in

Table set for breakfast: coffee, yogurt and fruit, pills, medical instructions, and a candle

1 February 2023

Dear all,
It’s nice to know that you are on the other side of this note. Thank you for being here with me. It’s soothing to imagine your beautiful faces turned toward me.

I am doing well in this moment. Even though I’m nursing a cold with ginger tea, even though the possibility of dying keeps tugging at my pants, I feel fortified. For the last two weeks I was blessed with a pair of two-day getaways. First my girlfriends and I spent time perched over the Youghiogheny River. Then my partner and I hunkered down in a wood and stone cottage in a snowy forest. It is soothing to be in the forest and next to a river when my soul feels frayed. It is comforting to be in the company of beloveds when we feel afraid.

As you might know, I started the full doses of the Myasthenia Gravis meds last week Monday. I can report that I feel slightly better. The biggest improvement is in my mouth. My tongue feels less like steel, and I don’t get too fatigued by chewing. My hands feel better too. I’ve not dropped so many things! I imagine that I experience less fasciculations (involuntary muscle twitches), even though I feel them now as I write.) My ability to swallow liquids doesn’t seem to improve, but there is still a week left.

February 6 will be two weeks on the meds and I’ll correspond with my neurologist.
On February 16 I get an MRI to check if structural damage in my neck could be causing this.
March 20th I have an appointment with the ALS specialist in Pittsburgh.

The big thing that is not changing with time or meds is that my energy is zapped. I pant like I’ve run two miles when I’ve only mopped my bathroom floor. Last week I went back to work. The first day I went in for half a day and I was productively there! The second day I went in, I got there and needed to nap. Then I tried to work again but was too tired. I ended up working for just two hours. Some nights my sleep is a moth-eaten sweater. Others nights I sleep twelve hours. I am not keeping up with responding to your kind messages— sometimes I just feel too tired.

Having so much less energy and needing much more rest is a new set of realities to grapple with.

– First cognitively: I have such a drive to live and do and experience things while I have the gift of being able to!

– Then relationally: I can’t keep my promises as surely as I used to. I can’t be counted on for a 7pm grocery run, or to walk you to the bus at 6:40 in the morning.

– Then, practically. Here is my (starting) list of practical learning edges:

1. Generate income
I can’t work full days. I’m wondering about getting more consulting/coaching work that pays well by the hour. I’m wondering how our company “Fit” can be fine with me fading in this moment.

I really want to keep writing (I’m taking a creative writing course this Spring!) and doing things that bring me joy. I’m thinking about other artists who gather financial support from their community through a platform like Patreon. I wonder what might be possible here.

2. Build a web of care
It’ll be good for me to ask for help in a more organized way. I don’t know what that will look like, but I wish to do it in a way that strengthens the web of care in our community. I wish to do it in a way that helps us heal from isolation, from the curse of “do-it-all-yourself,” from the fear of being the one that needs help. I wish to learn about disability justice, about mutuality and sustainability in long-haul care work.

3. Receive help
Recently friends came over to help clean or cook. Their help was so helpful! I loved having them here! And yet I felt soooo tired when they left, because a) I want to visit and b) I don’t feel like I can say, “So glad you’re here, I’m out of spoons, please excuse me.” This too is a learning edge: feeling worthy of receiving help when I can’t reciprocate your kindness with my presence.

Okay. My ginger tea is cold. I’ve been writing for two hours. I think I need a nap! If any of what I wrote sparked ideas, hold onto them. I intend to reach out with more targeted requests in the near future.

Again, thank you for being here. It feels so good to have you close by.

Hanna


Diagnosis still in process, and a challenging possibility

17 January 2023

Hello all,
This is Marc writing.

There has been some progress in the diagnostic process for Hanna, though we haven’t narrowed to a definite diagnosis. I’ll report on that in two steps—first the short summary, then news about a difficult new part of the story.

The short summary
Hanna had the EMG last Friday (see the 4 January update for a little about what that is), and a consult with a neuromuscular specialist about both the EMG and the results of a big battery of blood tests. The doctor said…

  • Hanna’s blood tests for Myasthenia Gravis are negative.
  • 90% of people who have Myasthenia Gravis (MG) show positive in the tests that Hanna took. There’s another 10% that present a false negative, so…
  • Hanna is going to take MG treatment pills, starting tomorrow and continuing through February 6. If she has MG, she will notice a dramatic improvement in her symptoms, probably returning to her full old self.
  • If she doesn’t have MG, she may still experience some improvement, but not to an “I’m my old self again” degree.
  • In that case, the doctor will proceed with next steps, including a repeat of the EMG in three months.

Now the difficult addition to the story.
All the stuff above about MG tests happened as I described. Then the doctor said, “I have a concern about what this might be. Would you like to hear it now, or wait three months until a repeat of the EMG confirms or disconfirms my concern?”

Hanna said, “I’d like to hear it now please.” And so we learned…

  • The doctor’s concern is that this could be ALS, which is difficult to diagnose—there are no specific indicators or tests. The doctor said that she found evidence of ALS during the EMG in two parts of Hanna’s body, but for it to count as a diagnosis it needs to be present in three.
  • In the continuing process of inquiry, the neurologist asked for an additional MRI test, “to rule out any structural etiology causing your arm weakness.” (Marc’s I’m-not-a-doctor interpretation: “Let’s make sure there’s no structural issue in your neck area that might be the cause of what we saw in the EMG.”)
  • So if the MG pills are not effective, the next step will include referral to her colleague and friend who is an ALS specialist. If it’s ALS, it is very early. Which is the good time to catch it. This doctor’s clinic participates in clinical trials, and it’s very likely that Hanna would qualify.

That’s tough news. ALS is a knee-weakening prospect. AND there is still uncertainty. And there are promising trials that could slow the condition’s progress, extend life and function, etc. If this is the battle one needs to fight, the medical resources in Pittsburgh make it a good place to be. There is community and support and love available connected with all of these possible outcomes. We’re all trying not to fall too far into The Worst Story, and hold the buoyant story of what’s possible and what’s present all around Hanna, around each of us.

Hugs to us all.


Closer to diagnosis

4 January 2023

Hello all,
Happy new year to you.

(This is Marc writing.)
Hanna visited a neuromuscular specialist today. A doctor named “Sun!” She was a kind listener, a good communicator, and took lots of time with Hanna. I sat in on the visit, which consisted of a lot of good questions, many taps in many places with a wee hammer, and a series of tests that felt like little games. “Lift your arms. Don’t let me push them down.” “Close your jaw. Don’t let me open it.”

Next steps: a round of blood tests that look for many different kinds of indicators, intended to support or eliminate possible diagnoses. And an EMG test—electromyography—which will happen next Friday (the thirteenth).

More soon: The doctor said (I’m paraphrasing from memory here), “With these blood tests and the EMG, I feel confident I will be able to make a diagnosis and discuss next steps for treatment.” So, not necessarily more certainty, but at least a near-term expectation for more certainty.

Warmth to you all. May the year bring buds, blossoms and fruit.


Next steps toward diagnosis

19 December 2022

Continuing to chase a good diagnosis…

The following tests are happening between now and the first week of January:

  • CAT scan
  • Blood tests for this and that indicator of this or that condition
  • An appointment with a neuromuscular specialist and a swallow and lung study

Feeling good about myself for all this adulting after so many late-night wakings!

x Hanna


Closer to diagnosis

16 December 2022

Good morning dear people,
How are you all today as this year comes to a close?

I had a good meeting with the neurologist yesterday and they suspect I have Myasthenia Gravis, a chronic autoimmune neuromuscular disorder. I am helped by knowing there is a possible diagnoses. Next steps are a slew of tests, scans and muscle studies to confirm and gain more insight.

After the call with the neurologist, Marc said it sounds like a Harry Potter spell and immediately made this picture:

Which made me laugh. I need to laugh now, I feel exhausted by this week and when I think future, I feel many other things. I woke up wishing I didn’t have to move and fearful that I’ll over do it and hurt my back/get ill again. And then I saw all your names on the list and received your messages and now I feel more hopeful. Thank you — and for those of you that has a cold / flue / covid — sending so many healing energy to you!

x Hanna


Health challenges, and a move

15 December 2022

Hello dearly beloved Pittsburgh people. I hope you are doing well today.

I’m in an interesting time with my health.

I’ve been having trouble speaking — making words and using my voice and having enough air for it. I’ve had multiple tests: CT scan, bloodwork and yesterday and MRI which all looks normal. This is a relief and a mystery. Today I’m meeting with a neurologist to see what next steps could be. This is new for me — and it has consumed a lot of my attention.

I don’t feel very together.

Oh my dear damn — at this moment I feel proud of myself if I remember to eat AND put the food away. Smile. So I am not inviting you into a very organized moment of my existence.

I’m moving this weekend.

Yes! I am moving up! I’m moving from my current four room apartment to the one above mine. So it’s an easy move up one flight of stairs. And yet… there are things to build and many things to move.

Could you please help me move?

*If* you have capacity and energy, please lend me a hand this week-end. I’ve made a spreadsheet where you can see the times I’ve marked up and the two types of requests — one to bring us food (or drinks) and another for your time. I’m practicing healthy dependance (thanks for that framing Michelle King!) which means that I trust you not to give if you can’t. And I will love you all the more if you come and if you don’t come. You know it!

Help me make it a moving party by arriving with joy and silliness if it’s accessible for you. Bring a hat, bring music, be with me in the joy of living and moving and all the muck that comes with it!

Love you people.

Note

This did indeed turn into a three-day moving party, involving more than a dozen people in different ways. Lovely, and thank you by the heaping heap-full to everyone.