Dedication of this blog: David Nathaniel McNinch

This blog is dedicated to:

David Nathaniel McNinch

David was my best friend in kindergarten; we used to walk to school and home together, amazing me with his talk of science experiments. I particularly loved the penny experiments, especially the one where he put a penny in a solution and the solution dissolved the inside, leaving just the outside shell of the penny.

How cool is that?

David and I would also talk extensively about his health….

David had cystic fibrosis and said he wasn’t expected to live past 21 years old.

By now, even though I had spent my fair share amount of time at doctor’s offices getting ‘pink medicine’, at the time I didn’t think I was abnormal, let alone with a rare genetic disorder as well.

In fact, I wouldn’t even see how abnormal I truly am until the fall of 2005, when I crashed into Cedars-Sinai desperately ill, frustrated and confused by doctors not understanding how ‘normal’ it was for me to have infections without an elevated white cell blood count or a fever.

Why do they keep looking at me like I’m crazy?

I was 30 years old in the fall of 2005, barely clinging on to life, before I finally realized the extent of the seriousness of my health situation…then it would be another 6-7 years before I realized there wasn’t much of a solution either… I was gonna have to live on a diet of antibiotics, immunoglobulin,

and a feast of doctors who genuinely love medicine.

Back in 1980,

David would talk to me about his condition…how it was genetic…that there was no cure but he had treatments,

so he was optimistic he was gonna make it to 21.

As often what happens with children and families,

I moved to Toronto, then to Virginia where my health memories really start to begin.

But I never forgot David, and I would read about cystic fibrosis whenever I could, hoping that advancements in medicine had caught up in time to help him.

Then around my 21st birthday, I tracked down his father (not easy in the pre-internet days of 1996, plenty of persistent phone calls to 411),

and eventually I connected with his father, Walter McNinch.

“Hello…um…I’m Tara M*****, I went to W.E Johnson in Kanata…David was my best friend…I was wondering how he was doing.”

Frozen.

Oh no…

“Well, uh, David passed away when he was 11 years old.”

11 —> 1986?

“His body hit puberty really hard, and he couldn’t keep up, so his body gave out on him.”

Tears streaming down my face. Ten years ago felt like yesterday.

“I’m really really sorry for calling…David was truly my best friend, we used to talk about science and his health a lot”.

“Yes, I remember David talking about you.”

I’m not sure if that was true, but I *really* appreciated Mr. McNinch saying that.

After a few more exchanges of memories and details regarding his passing,

we hung up the phone.

What David taught me — a lesson that would become absolutely essential to living life with a painful chronic illness — the reason I dedicate this blog to him —

David taught me how to hold my head high while suffering immensely, the importance of enjoying each day no matter which obstacles present themselves, to seize hold of our pennies of knowledge and celebrate their value and appreciate their wisdom.

David taught me by example it’s okay to be in pain and to love life at the same time.

To be grateful for the life we have to live,

and even though some of us pay a higher price to stay breathing,

we can all still play together.

In our kindergarten walks,

I had no idea how similar David and I were, how much the memories of his bravery and strength of his character would carry me through some of the truly horrific medical experiences I would come to endure over the years…

David was a gift, a glow of humility, patience, power and persistence, a treasure I’m still receiving today.

My last entry ❤️

After finishing the previous entry, I’ve come to the conclusion,

I can’t image writing another entry in this blog.

I never thought I would feel this way about ‘a blog’ (aren’t blogs by definition supposed to be the endless ramblings of the writer’s discretion?)

But this blog is now finished.

I may go back and polish various entries (I’m a sloppy writer when I’m flying off the cuff),

and I may add star notes in places to outline (numerous) holes in the timeline when I would go weeks/months without any entry,

(This is a personal blog, not a medical case file, in fact it’s not even close to being a complete documented case file (and there isn’t a complete case file anywhere of my medical case, because no fucking joke my medical case file would be easily over 50,000+ pages long (if I included all hospitals, independent surgery centers, private doctor appointments, lab tests, imaging, etc),

so I’ve never even bothered to try to assemble a complete case file

because who would ever want to read it anyway.

But for the sake of cohesion of this blog, I may go back and fill in various blanks…not sure yet…not even sure I’m gonna have time for that…

Right now, I’m in a major health spiral that I need to try and fight my way out of,

my worst relapse in years,

And I’m aware that I’ve used up so many of my nine lives, I’m due to run out of steam, so I really need to focus on pulling through this….maybe go back to cross country runnng? (Are you reading Shannon? (Shannon is my sister, we’re Irish twins being 11 1/2 months apart, but she didn’t get the bad gene that I got). Shannon if you’re reading, please stop laughing…going back to cross country running, desperate times means desperate measures 🙂

Or I need to use my time wrapping up my life…it is messy…

If I can get back on my feet in a few months, I may start another blog…I may write a book…I honestly have no idea what I’m gonna do,

but right now I need to fight to live. My son isn’t settled enough in life and he still needs me.

So, for the 5 people who stumble on this blog in a year, I feel it’s important to note I’m not posting anymore…

I never thought I would say this about my blog,

but this one is finished. ❤️

The next chapter awaits. Maybe I’ll be drafting it from the afterlife.

February 29, 2024

I decided beyond a shadow of a doubt as I recover I’m going to write an Autobiography detailing the creation of my independent feature (that I never finished) then my decent into the madness of the United States Medical System…

January 2004-May 2006

It’s been a turbulent journey and I’m only still standing because of the generous support of many physicians and friends…

‘A Demain

I was startled awake today.

I woke up around 8am, I had to go the post office to drop off my pittily eBay sales (otherwise I probably wouldn’t have even left my apartment today),

decided I was hungry, walked over to SB,

ordered a hot dog

then started text venting to my doctor about Dr. Schroeder.

Having a frustrating lung problem with no resolution can bring out the cattiness in the best of us and I was pissed because I felt like it had been more than enough years so why won’t my doctor contact him.

Text text text.

Dr. Sherman doesn’t get paid enough for my rants.

I was so mad at that moment, like super super pissed,

‘Maybe I was just fucking wrong about this asshole Dr. Schroeder the entire time’

Then through my flowing tears,

what is the truth of what happened? Was I completely wrong about the events in 2005, did I miss something? Is he really just an asshole?

Then RIGHT ON CUE, as if Dr. Schroeder heard my thoughts, and knew I was bitch texting in frustration,

he walked right up in the flesh…

Staring me down…

Does your soul really want to believe this revisionist history?

‘Is…that…Tara?’

As if god himself “now now Tara, don’t get too pissed, you don’t want to fall victim to re-writing the past —

I’m allowed to hold the beauty of the past and know the nothingness of the present

I was so shocked at his timing — unprepared, looking totally like a homeless lady — I’ve never been so thankful to be a clutter bug, yesterday I misplaced my regular glasses so thank fucking god I was wearing my prescription sunglasses so he couldn’t see the tears all over my face —

(The poetic irony of the tears all over my face as he approached is the broken heart of this memoir.)

So I was completely off guard when he was walking towards me (with his mistress?)

He definitely hasn’t gotten my emails.

He definitely hasn’t stumbled upon this blog.

In fact, I don’t think he’s even thought about me in a very long time.

But I saw it — for a brief moment I saw it —

the Dr. Schroeder in my dreams,

the man I’ve been talking to for years in my sleep —

It was him.

And he saw me too.

And it felt like time was standing still,

for a flickering moment I saw inside the heart and soul of the man I had met by the elevator,

So I smiled…

and my smile told him…I knew, he was seeing inside of me — at the exact same moment — I was seeing inside of him–

That’s why I couldn’t help myself but smile — the craziness of the moment — he’ll never believe what I was texting only moments before his approach — the timing was so unfucking believably psychic of him —

I couldn’t help but smile. His timing, the mistress, the fact I looked like homeless lady,

glowing in my overall happiness to see him,

All of it.

The smile was uncontrollable — I don’t think I even wanted to smile but I couldn’t help myself, the smile of seeing someone you love unconditionally (even if they don’t deserve it)—

I couldn’t help but smile into his inquisitive gaze —

‘Yes, it’s me.’

And the party isn’t over yet, there’s still a seat on the carousel for you. As long as I’m alive, I still need help, my case is like a raging fire that constantly needs supplies and reinforcements, and frankly now is a good time because my current doctors could use a breather.

And the moment I smiled,

it instantly answered his question, confirming my identity,

so he snapped his head high, into ‘fuck you’ mode —

(So unnecessary at this point)

and yet…

The snap is the truth of this story dear reader.

No snap, just inquisitive gaze with continued walking, well then, maybe I am crazy and the ‘soulmate’ energy I remember colliding into me in the fall of 2005 — when I desperately needed it most — maybe that was a figment of my extremely ill imagination —

If the moment had just been an inquisitive gaze walking by, I’ve had plenty of doctors walk by me with inquisitive gazes ‘wow she still looks pretty good for someone still hanging around the hospital a lot’, ‘thank god i’m not her doctor’, ‘wow i was wrong about what i thought back in year 20xx’

or whatever the various normal inquisitive gazes —

An inquisitive gaze walking by normally just means the doctor (or nurse or blood person) had been exposed to my case at some point in my journey,

and their medical curiosity sparked when they saw me again.

If there had been no snap by Dr. Schroeder—> then I am crazy, 2005 was a figment of my imagination. A fantasy created by a deathly ill woman.

But there was a snap–an unquestionably defiant emotional reaction–

Thus continues the truth of the story,

It is real and I felt it

and I know he did too.

Does it change anything?

?

Is he gonna contact me?

?

But it warmed my heart and soul — in the midst of this temper tantrum I was having — he will never know how fucking unbelievably crazy timing it was, like he was answering my thoughts kind of moment —

Like god himself ‘Yes Tara, it was real, and no, you’re not crazy’,

so maybe while most of his world may believe the harsh things he once said about me (in order to gather the strength to move on–it helps if everyone close to you dislikes that person too–) ‘the good doctor just cares for all of his patients like that and she totally misread the situation’

(Cults can exist for a reason)

that moment today at SB — unfucking believable timing —

gave my heart the gift of knowing

I can go to the grave knowing it was real.

I am very sick right now, and of course I’m doing everything I can to ‘pull through’,

but one of these days I’ll use up all of my ‘pulling through’ and that’s gonna be it.

Now my soul can move on from this lifetime knowing, without a doubt, it was real.

Am I gonna go back to SB?

Of course, I’ve been going there for over eight years.

Am I gonna hope he’ll walk up and talk to me one day? I wouldn’t even give him shit, I would just sit in peace for a moment…a quiet celebration, we’re still here…we made it through the storms of life and we’re still here…Am I hoping for this epilogue?

Of course…

We’re all allowed to dream.

I need to get this removed…

In my self reflective ‘where I’ve been where I am and where I’m going’ state,

I friggen ignore a lot of the little details

(Little earthquakes?)

And tonight my left butt cheek was hurting, in a weird way, and I felt something there (and I can’t see it)

and found this 😡

Since I’ve already had cancer on my scalp (so I’m rockin’ the 80s short hair do ), and my lip *twice*,

wow I need to get this cut out as soon as possible,

and let’s hope this pain is my sciatic —

(This is what happens when you don’t have a partner for years and years and years, there’s nobody to check these hidden away places…humans are stronger in partnerships, we’re designed that way, we are dependent on each other for survival in many ways. I’ve been blessed to have a rock solid medical family and supportive godfather, but the day to day living part of life not so much…)

img 5536

Overload of information: No wonder I’m a bad historian

I was just flipping through this blog,

(Which I literally haven’t done in years…normally I just write an entry and forget about it),

and I stumbled on this ‘daily in the life’ of my activities when I had a port infection in my arm (searching Chang in the search bar and this activity table will come up),

and while reviewing this table of daily life activities,

I realized I *completely* forgot about this port infection in my arm —

How my arm was barely slightly pink, the nurse at the procedure center tried to blow me off ‘doesn’t look infected to me’,

but Dr. Ng was so kind and instantly took out the port (much to the surprise of the nurse who had just moments before snarkily blown me off, out of earshot of anyone else of course, but the look at her face when Dr. Ng *instantly* reacted concerned when I told him I felt it was infected, was worth the sting of her initial remarks…she was gobsmacked 🤪)

(Plus I can’t waste time being upset over medical people blowing me off — it comes with the territory when you have a serious immune deficiency. A researcher at the N.I.H said that to me once, ‘people with the most severe immune deficiencies don’t look sick when they’re sick, because that’s the point of an immune system, to make a patient look sick when they’re sick, it’s a sign it’s working. People with severe immune deficiencies look healthy.)

And sure enough,

when Dr. Ng sent the port tip to be cultured,

it came back positive for Port Milibis (I am sure I am spelling that wrong…)

Pretty dramatic moment in my life, right?

Well, it was *completely* forgotten until I stumbled on entries in this blog…

And truthfully, compassionate reader,

Maybe only 20% of the medical events of my life are in this blog since I started it in 2012 — maybe 10%?

Which means most of the memories of what I’ve been through over the years has been lost to blowin in the wind —

It’s me — this is literally my life —

And I’m friggen overwhelmed (and bored)

by the sheer number of entries in this blog —

It’s too much.

Just too much.

And to think this is maybe (at best) a 20% recollection?

It’s the only way I can survive, living through these earthquakes of existence

Is by turning around then forgetting them —

I have to, otherwise it would consume the best of my brain all the time.

Just reading the short About Me is all you need to read to get the point across of my case.

I have a serious immune deficiency, let’s fucking figure out if there’s a way to solve it.

All of these entries — omg there’s almost a thousand here, a thousand equaling a 20% (at best) collection —

Just read the summary.

The rest of this is just noise.

It was February 12, 2003 the day it rained really hard❤️

It turns out it was February 12, 2003 that it rained so hard it flooded outside of the old apartment where we lived when you were first born,

which means that your name Noah came to me on Feb 11, 2003 😍

I love you very very much Noah, and I’m grateful beyond words that I’ve been able to live to see you make it into adulthood…it wasn’t always easy, and definitely there were stormy periods, but we made it 🙂

Now you have to embark on a journey of figuring out how you’re doing to survive — whether it’s a job or building a network of people who care about you enough to help you pay the rent, whatever or however it is,

but now you have to figure how to navigate the world —

And you can do it 🙂

It won’t always be easy,

but when you hit the darker moments of life,

Just breathe deep and remind yourself —

“I’ve been through worse and made it through” —

It doesn’t mean you won’t have scars,

or be shaped by your experiences,

But you’ll make it ❤️😍

I love you with all of my heart,

Mom ❤️

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The script for your psychiatrist meeting

After years of experience…trust me on this one:

1) start off with a compliment “nice to see you again”, then find something in the room you like “that’s a really nice lamp”

2) talk about school or something random. Break the ice.

3) then get into, “you know, that new drug xyz wasn’t really working for me, it was making me feel strange…since I’m the middle of the semester, I was wondering if I could just do the Lexapro 10mg, then in a month try the new drugs.”

PAUSE TO FEEL HIS REACTION —> if he agrees, then don’t say anything more. You got what you needed, you don’t need to keep talking. Continued talking will just potentially change his mind.

BUT —> if he still thinks no, he doesn’t want to adjust your medications, THEN elaborate further:

“The reason I would like to delay the new medications and go to the 10mg Lexapro, is since I have IBS (irritable bowel syndrome — and say it aloud, the full name — IBS, irritable bowel syndrome), it’s been theorized by my doctors that my serotonin levels are well below normal, so raising my serotonin to help offset the damage by the IBS will present a more detailed outlook of my mental health.”

👆try to make this part of the conversation sound as medically official as possible — the more medically professional I sound in this segment, usually the higher chance of success of getting what I need.

Then:

Path 1: if he resists “we’ll, we should treat your adhd”

Your response: “I hear you, and I agree, but I would like to wait until the semester is over so I can focus on getting the right balance of medication without the distraction of school”

IF HE FURTHER RESISTS:

Then — this important —

You have to pause, like you’re thinking about what he is saying…”hmm…do you mind if a take a couple of days to think about it? I hear what you’re saying, and I agree that it’s smart to treat my adhd with proper medications, is it okay if I take a few days to think about it?”

THEN —> you can’t go back to this psychiatrist and we have to get you a new family doctor.

This is extremely important —

I am 99% sure that raising your serotonin is the first step —

He’s right, untreated ADHD can cause depression, BUT

Untreated depression can also cause ADHD like symptoms —

In your case,

We don’t know what is what until we take care of the low serotonin levels caused by your IBS first.

If he isn’t hearing you, or get that,

Then continue on with the 5mg of Lexapro,

then we will research natural ways to raise seratonin (ie foods, exercise, etc)

until I can get to Canada to give you the rest of your prescription —

Learning how to finesse doctors who “don’t get it” and aren’t listening to you,

Is a very important life survival skill, because what you DONT want is to have a doctor write in your records “doesn’t listen to medical advice/stubborn”,

Because the word of a physician carries a lot of power in our society.

So if you sense a physician isn’t understand the subtleties if your medical case,

(Or if the physician just isn’t hearing you in general),

You still need to be careful how you handle your interaction with a physician who “doesn’t get it”,

in order to preserve your relationship with future physicians —

The ones who might get it.

Hence the importance of compliments at the beginning of the session…try to relax them, help the physician see your humanity, so they don’t want to be cruel to you…

NATIONAL GEOGRAPHIC: Is Ehlers-Danlos Syndrome really so rare—or is it misdiagnosed?

Hey Noah,

This is a good article outlining what you’re going through ❤️

Please make sure to give your teachers your accommodation letter — you need these accommodations, it’s nothing to be ashamed of — the world can be a cruel place for people with chronic illnesses, but hold your head high and don’t be afraid to ask for what you need 😍

Love,
Mom 🙂

Is Ehlers-Danlos Syndrome really so rare—or is it misdiagnosed?
Chronic pain. Extra-flexible joints. Stretchy skin. These are just some of the symptoms of the debilitating genetic disorder that’s incredibly hard to diagnose.

Read in National Geographic: https://apple.news/Ar6FCN48TTEaRvIeCx3B3Sg

Shared from Apple News

New ways to kill bacteria! Superbug crisis threatens to kill 10 million per year by 2050. Scientists may have a solution

Hey Noah,

This is really cool — a new way to kill bacteria —

The article also reminded me how dangerous your eye infection could be, so please be diligent about taking your doxy and doing the IG — you’ve had this infection on and off for years now, it’s going to take a lot of disciple and time to get rid of it (but you can do it 🙂

❤️

https://www.cnn.com/2024/01/21/health/antibiotic-resistant-germs-phages-wellness/index.html