Still...

So, last Wednesday, other than watching Firewood Man work (and putting in a few screws to say that I did), I might possibly have gone up and down the stairs more than I usually do in a week or two ... or three.  I am still tired.

So is Amos.

[Doesn't it seem like he has magical stretching abilities?]

Nibbling on saltines.
Sipping ginger ale.
Counting the minutes until the next dose of Zofran.

Again.

I read two of Michelle's Living with Bob blog entries that were, in large part, words of mine.  This one is about grieving the loss of who you were before dysautonomia began ravaging your life.  I get that.  I've tried to write about it.  She did a better job, especially how difficult her last year of work is and the burden of the loss of professional identity.

Timely, I thought.  Someone put my contact information up at the school run by my church as a reading tutor without telling me.  I don't know who.  I think, maybe, I don't even care.  I am trying to learn not to care about things anymore.

I know the information was posted because I got an email from a stranger who asked me to tutor her children.  I honestly thought it was some sort of joke or scam or just error until I figured out why.  I offered help the way I have with editing and marketing collateral work ... in an advisory position.  At least I did after thinking if I am up to risking another social failure.

If I could be of help, though....

Anyway, I thought it ironic timing because I have been considering getting rid of the professional texts that I have.  I keep thinking ... I'll never use them again nor will I be in a position to help someone with them.  I thought if I just got rid of the final bits of my academic life, I could set aside all the loss I have long felt over my Ph.D. ... never really achieving anything after that.  Meaningless to anyone but me.  And even to me ... now.

My plan is to meet with the parents and give them advice on how they could support word recognition, automaticity, and fluency at home.  Doing that should help with reading comprehension. I asked to meet at their home and be introduced to the young boys only as someone from church.  I planned to bring a few of my favorite books, to see if I could get them to share a few of theirs, to read to them, and to try and get them to read to me.  I thought if I could get a sense of their needs, I could let their parents know if they should have a formal assessment and pursue professional tutoring or to try supportive exercises at home and see how the second grade unfolds.

My literacy expert self would like to do that.  The rest of me wants only to remain at home, to not risk more awkwardness, more judgment, more social failure.  Besides, I really don't want to risk ending up lying on their floor waiting for blood pressure or heart rate/rhythm wonkiness to pass.  Which self will prevail?

Thus, reading that blog entry, fresh grief about losing who I was filling my being, I wept in gratitude to read about someone who struggles with the loss of who she used to be.

This one is about how Dysautonomia Awareness month is fast approaching.  I did not know that and I think that I am jealous, having read in the comments, that someone was in an office with posters about dysautonomia.  POSTERS!  The day I was diagnosed, I didn't even get a booklet.  Just a name and the words, "I'm sorry."

What struck me most is how, during disease awareness campaigns, folk want to hear the good stories, the success stories.  But dysautonomia is not about happen endings.  It just isn't.  There is no treatment for the condition (just chasing down things that help with symptoms) and there is no cure.  There is no help out there for a malfunctioning autonomic nervous system.  Period.

One of the things I learned reading this is that, in Austraila, economical access to Zofran (ondesetron) is severely limited, as in only for patients receiving chemotherapy for cancer—not even those receiving chemotherapy for something else.  The price comparison, as near as I can figure out, is like the astronomical price I am now paying for the erythromycin.  My Zofran?  $6.19 for a two-week supply if taken daily, which I do not.  So, for example, I've taken $0.22 cents worth of nausea medication today and $14.97 of digesting food (gastroparesis) medication today.  She also points out that no all medications are available in all countries.  For example, two widely used gastroparesis medications are not available in the US at all.

I particularly thought this bit was salient:

The misdiagnosis of a variety of mental health conditions is rife. Anxiety, Depression, Somatoform disorder, Conversion disorder are all reported prior to accurate diagnosis of a form of Dysautonomia. Trust is lost in the medical system. And patients experience stigma and shame which further impedes on their medical treatment. This feeds into the idea that Dysautonomia is related to mood and attitude rather than a dysfunctional autonomic nervous system. Once those labels are in your medical record they are incredibly difficult to remove.

Stress.  You get that a lot.  And I totally understand the entire failings of being diagnosed with Anxiety.  It is not my condition, but a symptom of my disease, and thus really should be treated differently.  That might be hard to understand, but the digestive issues are a like example.  The same drugs for a malfunction of the digestive system, such as those for irritable bowl disorder, do not help for digestive problems from dysautonomia.  The digestive system, the organs are not the problem.  They do not need the medication/treatment.  The nerves do.  And, frankly, there is nothing to help the  nerves.  So, for example, the erythromycin's side effect of making my stomach contract helps off-set the fact that the nerves are failing to take care of that job.

I was telling someone about this article, an ex-nurse, and she told me how often she saw folk who had some sort of mental health diagnosis be ignored or have poor treatment because of the most permeant label of being "a head case."  She mentioned this one night when a woman, who had previously been in the psych unit, came in with a severe illness.  She was catheterized.  She complained that it hurt and was not helping, but all the nurses ignored her.  When the woman who was telling me the story came on duty, she discovered that the reason the catheter hurt was that it was not placed properly, something which anyone would have realized had they even bothered to look at the still empty bag nearly eight hours later.  Thanks be to God the patient had a medical personnel come on staff who thought medical care was important even if someone was truly "a head case"— which the patient was not.

It's the same with being a sexual abuse survivor.  Only your records will say victim.  Once the victim, most folk treat you as always the victim.  Anything you try to talk about physically is interpreted mentally.  I mean, seriously, I bled for four years whilst seeing four specialists to whom I was only the victim, the anxious and upset victim.  I see a fifth specialist here and am helped in a single office visit.  She and her staff are most accommodating of the mental struggles I have being examined and treated, but they count that as nothing.  They care about my physical well-being.  I am no victim to them.  Each and every time I am there, even if still weeping, I thank them all and tell them what a wonder it is to be treated at that office.

SIGH.

Anyway, if I could force my friends and family to regularly read Living with Bob (and read the old posts and the comments), I might be viewed and treated as less of a ... burden ... nutter ... leper.  But maybe not.  Chronic illness is not for the faint of heart or for the fair-weathered friend. 

You know, I was once diagnosed, after 15 minutes with no physical exam, as having fibromyalgia.  I might add, without even having gone to that particular specialist for pain (the hallmark of that disease).  I laughed my way to the car.  It was one of the most absurd moments of my life.  It was also one of the loneliest.

Michelle notes that most dysautonomia patients are helped by others with dysautonomia.  There are whole sections of the medical community, whole countries even, where dysautonomia is unknown.  

To try and distract myself from the waves and waves and waves of nausea tonight, I spent some time reading older posts from Michelle's blog.  And I found this older one (2011), which I can actually embed below since it is a video post.  It is about grief, coping, and compassion, with little bits of daily life with dysautonomia sprinkled throughout ... like fainting just trying to get to the loo.  SIGH.

Funny, I supposed I should expect from someone whose pre-dysauonomia self was a psychologist to say those magical words, but I was still surprised:  "It's okay."  Better still.  "You're normal."

It's okay.

Hearing those words are such mercy.