Last Day of Summer 2019

Tomorrow (well today really) my boy starts Second Grade.

I am nervous.

You see there was a chance that he would have been reassigned his Homeroom teacher from last year. Except we found out on August 15th that he hadn’t.

Not only that, but the friend he had specifically been partnered with last year has been given that teacher again, so they have been split up.

So allow me to summarise. The kid who doesn’t deal well with change (understatement of the freaking millennium there) has had everything that he was used to ripped away from him.

I. Am. Not. Happy.

Not one iota. I actually sent an email to the Principal a few days ago outlining my concerns. I received back a reasonably long reply but it mostly just amounted to a hand flap and an “it’s fine”.

Well. Ok that’s the way they want it, fine. I hadn’t ever told #1 Son that it was a possibility (I’m not so green as I am cabbage looking) so he’s not disappointed. He also seems to already know his new teacher and seemed pleased to have her, so that’s a relief.

She has brown hair.

She is a girl.

It’s something I guess? 🤣😂

So I’m trepidatious but hopeful. Hopeful that he will prove my fears groundless. But if he doesn’t? If there is backsliding? Oh you best believe that Mama Dinosaur will be coming out all teeth and claws.


Seriously the T-Rex from Jurassic Park: Lost World will have nothing on me


And the reason I’m still up at almost 2am? I was sewing a name label in his denim jacket. Yes, I was.

See I ran out of spoons again today and did another “Stop, Drop and Nap” at about 5pm so I’m wired.

Which segues me in neatly to my one week post-surgery check update

Overall I was doing pretty well but then I accidentally overdid it somehow on Saturday and paid the price on Sunday – and I crashed out completely whilst feeling exhausted and nauseous, much to the chagrin of TT.

#1 Son had a pool party that day too, and I was determined he was going to go goddammit. However I couldn’t take him for many obvious reasons:

  • Not allowed to get incisions submerged.
  • Not allowed to drive (not that I can out here yet)
  • Still fucking exhausted.
  • Would probably drown.

But the hus-creature did not want to leave me on my own with TT. So we arranged for the eldest daughter of the lovely lady who picks #1 Son up from school to come sit with her and me for those couple of hours. TT was in heaven 🤣😂

The boys had fun, though it was an outdoor pool so the water was cold.

There was also a playground where he chilled out when swimming got a bit much:

So that was my weekend.

So I had my one-week follow up today and as the doctor was running over an hour late I spent that time sitting in typical doctor’s office chairs which completely did me in – I’m not supposed to sit completely upright for extended periods of time right now 🤷🏻‍♀️🤷🏻‍♀️🤷🏻‍♀️

It did go reasonably well though. I’ve had both sets of stitches removed; we’ve gone through the packet of photos I was given immediately post-surgery.

I found them deeply fascinating surprisingly; and actually understood a fair amount of what I was looking at. It wasn’t just personal viscera.


It did remind me of what happens when you trim the fat off of raw chicken before you cook it though 🤣😂


They also included some incidental shots of my “very healthy” appendix and liver which is always good to know 🤣😂

I have to see him again in two weeks and am to gradually increase everything activity-wise up to approximately 50% of normal in that fortnight. I’m still not allowed to lift heavy things.

So I can go up to school with #1 Son tomorrow so that’s a relief. To him as well as me – though the sweetheart would never have asked me.

So the doctor says it’s okay for you to come mom? That’s good. You have to do what the doctor says you know – the doctor knows best

I don’t mind admitting that my heart swelled and broke simultaneously there. He’s so so special my lad.

I’ve already decided that I will not be going up to knitting tomorrow, as I can’t face walking that far, or sitting in a hard backed chair for two hours; or to have my nails done on Sunday – that’s an even longer walk, plus two trains and I just cannot justify that. I’ll provisionally rebook for the following Sunday – lord knows that my amazing Matthew will understand.

Goodnight dear audience, I ought to try and get some sleep tonight. Of course I know already that going up to school tomorrow is going to wipe me out.

I don’t care. My boy deserves this. I am going.

He asks for so little, I’m bloody doing it. For him.

In recovery from surgery

Yes, again.

Warning.

This post will contain medical details that may not be pleasant reading for the squeamish, and significant swearing. You have all been warned.

When I wrote that last post I was dealing with knowing what was likely to be upcoming – and as ever my ability to be prescient about my own health proved accurate.

I needed more surgery. Which I was not happy about and was having a strong case of “not just a river in Egypt”.

But wait, I hear you cry dear audience. What was left for them to take out or otherwise fiddle with?!?!

Well apparently I had at least one cyst hanging out masquerading as an ovary*

Ghost ovary was a term bandied about pre-surgery which was fun. My surgeon made it sound like Pac Man was hanging about in there but at least it was something they felt would be easily dealt with.

Then came the bit that made me pull this set of faces –> 😖🥺😖🥺😖🥺

When I get in there I’ll have a good rummage about and see what I can find and deal with

Now I am most definitely paraphrasing a bit, as that discussion was over a month ago and I’ve had a general anaesthetic since then – three days later and my brain is still more than a little scrambled. But you know, that’s still not the most reassuring way to put it is it?

Anyway, I went up on Tuesday morning for 07:30 surgery and that bit at least all went pretty much according to plan. I came around to find that it wasn’t even 10am, so less than two hours under the knife which was good.

Oh, and they managed to insert my IV the first time, and in my non-dominant arm at that. But this time removing it was a problem – narrow veins caused an issue, so I’m now sporting another fetching bruise.

I also wasn’t in much pain when I woke up which was great.


Yes, I did take the offered Percocet, and am still taking the pain pills as needed – I’m not being a hero this time…


However, upon discharge the hus-creature got given some information that I wasn’t aware of.

I mean, the surgeon did come and see me post-op, and talked at me, but I was spacey as fuck and still on the oxygen, so there’s no way I took any of it in….

Instead of just the one expected incision through the good old navel (yet again) I am also sporting yet another incision along my bikini line.

Because, as I predicted, my insides were still fucked all to hell.

My intestines were so stuck together with adhesions (from endometriosis) that they resembled a severely kinked up garden hose. That’s a direct quote from the surgeon.

I was also severely backed up. Which is amazing to me, as this new diet had been working *wonders* on my digestive system or so I thought.

But see, this still wasn’t a surprise to me. As it explained so much of my issues both past and present when I flare up.

I’ve had these particular issues since at least age 18. I can clearly remember having to miss university classes because I couldn’t move from the bathroom. So yeah, almost 20 years.

You see, when endometrial scars and adhesions activate, inflame, whatever we want to call it they do all sorts of fun and happy shit. This includes constricting and contracting. It’s like being in labour. All. The. Time.

Now imagine that happening in your bowels. Sound fun? Nope it kinda wasn’t and isn’t.

But apparently my surgeon may have been able to deal with a lot of it. I don’t know exactly how much yet – I should get the scope of it next week at my post operative checkup.

I should also get the histology on the cyst – but honestly I firmly believe the cyst is incidental. That the real cause of my recent bouts of pain was the bowel issues.

So that’s been dealt with. At least for now. And clearly the dairy free, fun free diet has been helping.

In one little bit of amusement, the nurse wanted me to eat a little before she gave me any strong pain killers (which is fair enough) and they gave me some honey Graham’s. Which are lovely.

But they are made with enriched grains and all the bad sugars and contain dairy. And when I read the label one of the first things I said was:

Uh oh, don’t tell Doctor Witkowski

And she replied that yes she often had to sneak these to his patients and felt bad about it but that there wasn’t much they could do. I just grinned, promised not to tell him and asked for some more 🤣😂

So here I am at home recovering. The hus-creature took the rest of the week off to look after the kids for me. Even now three days later I’m still suffering from “Stop, Drop and Nap” Syndrome so he’s had to take full responsibility for them – and he’s doing an amazing job both with them and looking after me.

TT did baking with Daddy this morning.

Daddy and #1 Son are spring cleaning in his room and doing a major tidy and sort out of toys, books and similar. We had done the annual clothes purge last week in advance of the return to school (and Second Grade 🥺) next week.

So I’m currently surplus to requirements which is fantastic as it means I can focus on trying to reboot again.

I don’t know what happens next, but hopefully Tuesday next week will tell me more.


*Allow me to clarify. I had the joy of a pelvic ultrasound whilst mid flare up and the scanner detected an ovary. Which is impossible and so therefore was presumed to be a cyst.

The realities of chronic illness

I have endometriosis. It is a chronic, mostly invisible, illness.

This is permanent. There is no cure. There’s nothing I can do to be “better”. It’s never going to go away.

And it’s exhausting. It’s debilitating. And it’s fucking frustrating.

We were going to go to the beach today. Except that I woke up in flare up hell so we’ve had to cancel/postpone.


The worst part of this is that I knew it was coming yesterday but I pretended it wasn’t because I believed that I could control my body through sheer force of will. Guess what? I can’t.


Fortunately we hadn’t told the kids the plan, so they AREN’T disappointed but I am. I’m just devastated.

This is actually the very first time I’ve had to cancel big plans for the kids due to pain (which is pretty bloody good I guess) and it’s had me in floods of tears today.

I’m so so SICK of being sick.

I’ve done everything I could, I’ve opted for surgery that was no goddamn cake walk, and one that has left me unable to have more children of my own should I want them.


Don’t mistake me, I’m grateful to have my babies, but the choice was denied to me. And even now, when I am at peace with the decision, sometimes that pisses me off.


And what is left to me? Nothing.  There’s nothing that anyone can feasibly offer me, because I’ve done the two things that non specialist medicals claim should cure it:

1. Have a baby

Welp, let’s unpack and examine that one further shall we? My condition was only discovered after #1 Son was born.  So, guess what?

HAVING A BABY DOES NOT CURE ENDOMETRIOSIS

I’m going to say that one more time for the people at the back there in the ‘Medical Community’

HAVING A BABY DOES NOT CURE ENDOMETRIOSIS

Or, if it somehow improved it in any noticeable way, I bloody dread to think how utterly, utterly screwed up my insides were before I conceived him.

But then along came TT, and my surgeon here who performed my hysterectomy? Isn’t even remotely surprised that I’m in flare-up 5 (well it was 4 when I saw him last month). Because, and I quote,

I saw your insides. They are a complete mess.

And that was the most recent examination of them – nobody else had actually seen them post-TT arrival.

So before I go into the prescribed treatment options, let us discuss the other ‘cure’ that the so-called medical community loves to throw out there.

2. A Hysterectomy

Please excuse me while I die of hysterical laughter.

Because, you see, considering that a very considerable sub-sect of the medical profession considers this procedure to be the Holy Grail for us Endo Warriors, they make it practically impossible for us to achieve it.

First, there’s the age-old

What if you want more children

Well now Doctor Smart Ass, if you have looked at my goddamn charts you will have seen that the two I do have are literal unexplained medical miracles.

I have replaced myself and my husband, so I’ve fulfilled any kind of biological imperative that there is in the assumed social contract.

Three, if I ever seriously do take that particular blow to the head, then hell there is always adoption.

Four, yes you know what, when I was younger I did want three children. I’m one of three. To me that was the “correct” number. But that was before. Before I learned how bloody difficult parenting truly is, and before I learned that my chances of having one child, let alone three were slim-to-none.

So I’ve heard various iterations of that particular stream of bullshit but that’s not the worst of it. Not by a long chalk. The worst one? The one that has had me incandescent with rage? The one that has had me questioning what century I’m living in?

But what if your husband wants more children?

Or:

What if your husband leaves you?

Followed by

Then what if you meet a new man and he wants children of his own?

Firstly what the fuck? What Handmaid’s Tale level of sexist, misogynistic bullshit is this?

Am I really, truly only worth the potential contents of my uterus? In 2018 (when I had the surgery)?

Secondly? If the hus-creature did leave me right now? Today? I would have much bigger problems than the potential for no children with any hypothetical new partner.

I would be being deported. So yeah, that was so far beyond my scope of worry it’s bloody laughable.

Also, my husband? Not a huge kid person. He married me knowing _I_ wanted kids, and so agreed to have two but he would have been perfectly happy being SINK/DINK so three? Nah. That wouldn’t have been on the table. Which is fine. Men get choices here too.

So I went ahead with the surgery.

Now let’s discuss that particular set of thorny problems.

I wanted a complete hysterectomy. Everything. Out.

My attitude:

Now, it took over a year of begging and pleading to be put on the blasted waiting list when we were in the U.K. having been informed it was six months for the surgery I wanted, they kept me hanging for almost an additional year, and my operation came through for a month after we emigrated.

Now I will never, ever, criticise the NHS. It’s an amazing system, the U.K. is lucky to have it but in some ways it very much lets people down.

Those of us with chronic conditions? Both physical and mental? Yeah we slip through the cracks.

I do comfort myself with the thought that me cancelling that surgery must have allowed some other equally desperate woman to have hers sooner than she had hoped.

So I came out here, met my awesome surgeon who pretty much agreed (after reading my stack of medical records) that I needed the surgery.

But even then I had to plead for the total. He wanted to leave my cervix in at least.

I did not wish to remain a high-risk candidate for cervical cancer. However once I pointed that out he agreed.


However every single time I go to see him he does ask if we left it in there – this does not fill me with confidence


So I did it. I documented it. I had 11 months of freedom.

Now it’s back. And getting worse. And I’m not sure what is left for me to do. He has some ideas, there’s some treatments upcoming – but I’ve got no spare organs left.

There’s nothing else he can cut out. I’m not ready for a colostomy bag – and anyway he’s an OBGYN not a Gastro Doctor so if there’s more in my guts it’s going to need more referrals and arguments with insurance companies


We just got the bill for my “sick visit” last month – insurance companies don’t pay for those here. They did negotiate a lower rate but it’s still $160+


And did I mention I’m tired?

Tired of being the ill one. Tired of being the strong one. Tired of having to lean on my (amazing) husband time and again. When does he get to be the tired one? Tired of scaring/upsetting/worrying my children. Tired of hearing poor TT saying

Mommy is poorly again

Tired of missing out with #1 Son because it costs too many spoons to sit in the fucking backyard let alone take him to the goddamn playground.

I’m sick of this being my life. I want it to be hyperbole. Not reality.

And I’m scared. Scared for my daughter. Scared for any potential granddaughters.

I’m not taken seriously, the cycle is going to continue. I just pray it skips my girl.

And so the end of Summer Camp

And, as we were leaving? This quote from #1 Son:

It’s going to be a whole year before I come back

Honestly? You could have knocked me down with a feather.

He’s grown so much. His progress report has him so much improved from Week 1 to Week 6 that I could just burst with pride.

His teacher was full of praise for him

#1 Son is a child with a lot of love to give

She also noted that Math is his strongest subject, but that he needs to continue with daily reading aloud practice to maintain fluency.

You can imagine his joy with that 🤣😂

I also got to go in to get him an hour early on Thursday to see what he had been doing, and to watch the children put on two plays.

He was in The Three Little Pigs and he played The Big Bad Wolf. And he did so, so well. He only got a little overexcited at the third “act” and did his bit over the narrator. But the other little pigs just rolled with it- so it was only the narrator herself I ended up feeling sorry for.

Then we were shown examples of their “Persuasive Writing”

And my son?

Where the other children had written statements and arguments about why they should be allowed a puppy? (Or at the very least a bunny?)

My little socialist is trying to persuade his teachers that they need a recess.

He was also the only kid in his class to receive a certificate for 100% attendance. Which I struggle to understand, but a. It’s a free programme and b. The sheer cost of summer vacations of any sort more than triples in August.

But it’s a programme run for kids with IEPs, so in my opinion it’s beneficial for them to attend the full 5 weeks (and change)

However I can see why it might not happen, and I’m pleased his perseverance was acknowledged.

And I very much hope all the teachers who have given up so much of their summer now have a very well-deserved break!!!!!