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.

Many things

It’s been a busy few days.

TT is (whisper it) 100% reliable during the day on the toilet when it comes to doing a wee!

We have also had two days in a row where she has successfully done a poo in the correct place*

We have had no accidents all week thus far.

Night training is not happening, as we are attempting to wean her away from her middle of the night bottle and it’s just cruel to do both at the same time…


That and the one night we tried it she screamed bloody murder, fully woke up, and then actively refused to go back to sleep without said bottle – she won that round!


But she’s doing amazingly – especially when you consider she’s only 26 months old!!

Okay so she doesn’t now need the “cooling” pull ups we bought, or the plastic pants. Bugger. Ah well, we live and learn. And if we hadn’t have bought them, we would have needed them.

Sadly we had a bit of a backslide with #1 Son on the behaviour at school front today. He ran out not once, not twice but five time today, and even ran back into school at pick up time whilst the Mothership was talking to his teacher about the previous five occurrences.

I received an email from her this afternoon confirming that he had had an “emotional” day (stating that no-one would play with him and that he felt that no one loved him 😰) outlining her strategies for helping him tomorrow and giving us a framework to talk to him.


One of the problems is his refusal to accept that other children might just want to play games of their own choosing too – we are working on this…


He has had two more party invites though (one of which is ice skating – but thankfully with options for non skaters) which ought to help a little.

The other is a bouncing party – your guess is as good as ours on that – but that should at least be fun for him.

The lovely H brought up some presents for the kidlets today and he completed one of them

Momma and I are hoping that H will be able to join us on a small night on the town on Saturday.

His reading has come on in leaps and bounds. He actually asked to read with mom when he got home from school!!!!

He still hates writing, so I think that will have to be the next point of focus, but it’s amazing to see how well he is doing.

Mom met up with his teacher on Tuesday afternoon to discuss his progress and ensure that we (mostly her) are not confusing him compared to how they are teaching him in class.

It meant she got to meet his support team, and see his little cubby that they’ve built for him to (effectively) escape into when he gets overwhelmed.

Yes, it is literally a cupboard – it works for him.

He will also be having weekly sessions with his therapist every Tuesday at 07:15 – this means he won’t be too late into school, thus not impacting on his daddy’s work day too much.

As for me? I’m slowly getting back behind the wheel. I’m not great, but at least when I screw up I’m following through and have not (for example) crashed into a roundabout, nor ran a red light, nor turned into oncoming traffic without signalling.


Which are all things I did back in England prior to passing my U.K. licence


So I consider that I am doing okay. I need practice, and I need to pass my theory test (yet again) but I am studying and having gotten through half of the USA equivalent to the Highway Code today.

I’m now exhausted and have an incipient migraine 😂🤣

I also had my second post-op checkup yesterday.

My doctor is very pleased with my progress. I am to increase my doing of things, though not to lift anything heavier than a gallon until I’m the full six weeks post-surgery.

He does however want me to break up with dairy 🙀🙀🙀

(I mentioned I wanted to lose weight)

At the moment dairy and I are merely agreeing to see other people 😂🤣

I can cope with losing chocolate but not my cheese. And I’m trying to work out what I could put in my tea instead of cow’s milk.

But I’m going to try.

He next wants to see me in six months, and this appointment is already booked 😱

Mom and I also went up to knitting group yesterday and had much fun 👍🏻


*With many apologies to the non-parents in my audience, this sort of thing is big news when you are a stay at home parent!

Home again, home again

So, I have been discharged and am safely snuggled in my own bed.

I can’t say I’m 100% comfortable but I have 19/20 Percocet pills left (which I am only taking before attempting a stretch of sleep) and Motrin, which appears to simply be extra strong ibuprofen, so we have that too.

The kids were thrilled to see me 😊 well #1 Son has been asking what he can do to help me 💕💕 (I’ve told him that helping Nanny is best).

The beam I got from TT was worth it, though she soon stopped speaking to me when she realised I can’t pick her up.

Unimpressed toddler is unimpressed.

Today (Wednesday) marked 100 days at school for the year for #1 Son, which is apparently a thing to celebrate over here, so they were to go into school looking 100.

The facial expression seems apt, even though it was based on “not wanting to go to school because he wanted mommy”


Oh, and that TT had dared to start eating breakfast before him…


He wanted to visit today, but it was snowing heavily, an early release from school day, and I was being discharged anyway, so daddy distracted him with The Lego Batman Movie and brought me home.

Tackling those stairs was not fun, so I will not be booking my follow up early. (I need to see Dr. Witkowski on Tuesday or Wednesday of next week).

The cat has been the one to jump on my belly, and appears most affronted that she got almost flung across the room for that cuddle attempt.

I’m going to go to sleep now, adieu dear audience.

Day Two?

Or is it three? My counting might be off. This is certainly Day 3 in hospital. And I might just be going home today.

I’m a little apprehensive about that – but only because I’ve been liking having a motorised bed.

So, yesterday was spent in a fug of dozing, sipping liquids, attempting food, and having meds.

I’ve (at the nurse’s suggestion) cut back my Oxycodone to one 5mg tablet every four hours, which coupled with Tylenol every six is keeping me tolerably comfortable. And it means my prescription of Oxy will last a bit longer, giving me more time to heal.

As previously stated, this is not pain free. But it’s working. And I get to keep my support band thing thank the gods.

By my reckoning I am coming up to the 36 hours past where the belly tap should have worn off so this is a good sign.

The nurses here are amazing. No, really they are. I’m on the Mother and Baby ward and so I’m a little bit of an oddity and I’m being looked after so well.

Yesterday there was a really sweet High School student doing work shadowing, and she was so happy and bubbly. She was telling me all about how much she loves kids and the M&B ward. And we bonded over how we both swallow tablets


Sip of water, tablet in mouth, snap head back to swallow


Which apparently everyone in her family consider weird – so I’ve told her to say it’s the British way 😂🤣

So I think I was a bit of interest in her day. Overall I haven’t heard many babies, I think twice we’ve had “I am a new person and I am angry” levels of noise, and some of what sounded like hyped up older children visiting, but I’m in my own side room so I don’t disturb them and vice versa.

Food still isn’t interesting me much. I had a good breakfast yesterday:

I ate it all. I plan on re-ordering it today and hoping there’s tinned peaches today rather than the banana.

Lunch I think I was too optimistic – I ate my corn, half my chicken breast and my chocolate ice cream. Ignored my baked potato.

So for dinner I just went with chicken noodle soup and the ice cream. I’m keeping well hydrated with ice water and apple juice and nibbling on graham crackers so I’m not worried.

And it’s not like I couldn’t afford to lose a few pounds 😂🤣

TMI ALERT


I still haven’t pooped though. But considering how little I’m eating overall I’m not too worried yet.


I went for a short walk yesterday which is great progress. Getting up and down still hurts like anything, but moving around is beginning to become easier.

Okay, time to order food, as I actually feel hungry 🙀

Lab work woes

So. I had a letter confirming my surgery, which told me I was to toddle up for a pre-operative assessment any time between 22/01/2018 and 03/02/2018.

Please note that: Any time between those dates. There was apparently no need to book an appointment.

I could even go up on a Saturday. Well, although that seemed more convenient, meaning the hus-creature wouldn’t have to work from home, we decided it was most sensible to go up on a weekday.

So, here I am. I was educating my Lyft driver on some fundamental differences in the health care systems between the UK and the USA. He pulled some WTF faces when I explained about waiting lists, but did concede that you know, not going bankrupt was a nice perk.

Also maternity leave. Honestly my heart breaks for the few pregnant women of my acquaintance out here.

So? Do we think it’s gone/going well?

Ahahahahahahahahahaha.

Surely, surely madam you jest?

Well, I got there at 08:10, not bad I thought, since on weekdays they open at 07:00.

First thing I had to remember is that for Americans the First Floor is what I, as a Brit, consider to be the Ground Floor. So I got a little flustered trying to find the First Floor lab. Still, the lovely receptionist sent me to the Registrar to do paperwork.

But hang on, I was told I didn’t need to make an appointment. That I just walked in.

Nope. And that wasn’t the first piece of misinformation.

So I’m sitting waiting and get called.


As I was, the lovely J called to let me know that #1 Son had had a full meltdown in the car over not being able to get out and play.

Well kiddo if you’re going to keep running into school at the wrong times, we have to adjust to fit.

I am expecting a bad day now 😰


First, they couldn’t find my surgery in the system!!!!

So that right there wasn’t good. However, once they checked the spelling of my surname, and got the correct date of the operation in, there it was!!!

And then there was nothing in the system about my pre-operative testing. The lovely registrar (thank you Mary, you were a saint!) was trying her best to find it.

So they try to ring my doctor. Well it was only 08:25 by this point, so they weren’t open.

With many apologies, they send me back to the waiting area.


It’s more than okay. I’m used to any kind of medical related appointment running at least 40+ minutes over. I had brought my knitting and snacks.


The poor staff were amazed that I wasn’t kicking off about this. But see, what does that achieve? You get a black mark against you, which will affect the level of service you receive, and you just make someone else’s life even fricking harder.

I also heard a more higher up person mutter that my particular doctor’s office is apparently known for screwing with the paperwork. They had tried entering a span of dates, including the ones on my letter, but they hadn’t worked.

It turns out that when the provisional hysterectomy was agreed back in December (the 12th for anyone who is interested) the paperwork was inputted into the system and dated for 20th December.

So no wonder they couldn’t find it!


By this point I highly feared for anyone attempting to take my blood pressure!


So off I toddled to the lab, armed with fresh paperwork, labels and renewed hope singing in my heart.

And actually, it wasn’t too bad. I was waiting less than 5 minutes. Then the two phlebotomists fought over who got to stick me because they loved my accent.

I warned them about my (notoriously) bad veins, but she stuck me and got two vials of the stuff first try!!!

So then off I trotted home to relieve the hus-creature (as he was distracting the Tiny Tyrant) and send him off to the office, with a sore arm, but I’m pleased it’s done.

One month til O-Day

And O in this case refers to operation.

Stop snickering at the back there.

This time next month I will, hopefully, be in recovery after having had the organs that have repeatedly try to kill me since I turned 15 removed.

Unfortunately, they won’t let me watch them burn. This saddens me.

Ah well. Que sera sera.

I’m optimistic about the prognosis. Don’t mistake me, I’m under no illusions that it’s a miracle cure, but it will get rid of a lot of my pain, the root cause of said pain, and eliminate any chance of:

  • Ovarian cancer
  • Cervical cancer (which I am apparently at risk for)
  • Endometrial cancer (also at risk for)

Which are all big ticks in the plus column.

It will also (obviously) remove even the slightest chance of another pregnancy, which though I am a little sad about, at least in the abstract, as I am stupidly high risk for ectopic it would be nuts to even think about that again.


Not to mention the hospital bills – which I am currently endeavouring not to think about, since my colposcopy alone was circa $450


Also my own mommy is coming to look after me 💗 and by the time she gets here I won’t have seen her in over six months so that’s wonderful.

PS – Mothership, make sure you get your ESTA sorted 💕

Oh look, she has a blog name now 😂🤣😘

Physicals

Are not fun.

At least my beloved childer-beasts do not think so.

The appointments began at 09:30. We were not home until 11:22!!!

Both children had:

  • Flu shot
  • Chicken Pox shot (#1 Son had a booster)
  • Hepatitis A shot
  • Hepatitis B shot
  • Blood drawn (finger stick) for iron levels etc.
  • Wellness check which was gender specific
  • Height and weight

#1 Son is on the 74th centile. TT is 91st. The doctor said she had a “cushion” so despite the frustrating faddy eating, beyond a multivitamin daily to not worry so much.

They will start the referrals for #1 Son. They commented he was bright, on target, and were generally positive.

He however did not handle the sticks and jabs brilliantly. Don’t get me wrong, he was very brave honestly, but oh my the histrionics after were by turns heart wrenching and hilarious.

“Why does this happen whenever I come here?” – this was his first visit

“I don’t want to be healthy” – he rejects our explanation of why it had to happen

“I am never going to be healthy ever ever

He’s either going to be an actor or the teenage years will be… FUN

As it happened to be a half day yesterday, wherein school finished at 12:22 I opted to keep him at home with me and we had a “duvet day” – only with Minecraft in lieu of an actual duvet.

It just seemed prudent.

 

TT was well overdue for a nap by the time we were done so she threw a tantrum the likes of which I had never seen. Blimey. Screaming, sobbing, sweating, clinging, hitting everything and everyone… the sucker pop calmed her down though.

This counted as her Two Year Review, so barring illness or emergency they don’t need to see her again for 12 months.

They do want to see #1 Son within 6 months to keep an eye on him given the recommendations.

Sadly, the waiting lists are long so it’ll take time, but the doctor wants to see all school reports to talk us through them so I feel much better.

My Sit ‘N Knit class was great – stay tuned for Wonder Woman socks if there’s a skein of that yarn left in the shop next week…

It will have been there, unsought, unloved, for three weeks – it will deserve to be mine!!!!

I also bought a clothing pattern. I’m coming out of my comfort zone.

I also put down the kitten deposit. Missy Kitty Pants will probably be grumpy for a while but meh. She is being a madam at the moment – hiding etc.