living that curvy life and new medical devices. yippee!

Time off in Hippieville equals, among other things, projects in the Hippie Hut, frequent doctor visits, and crazy sleep schedules. This particular stretch of downtime has been no exception and I’ve found myself on a “sleep when I’m tired” type of schedule that usually has me napping from 12 AM to 4 AM or so. After about 4 hours, my body usually decides we’ve been pain-free long enough enough and it’s time to wake up. So here I am tonight. Hola!

But that’s okay. As your friendly neighborhood autoimmune hippie nerd blogger, we are due for a check in anyway. So let’s chat. πŸ˜‰

the curvy life chose me

I’ve written often about my prednisone and accompanying weight that has found me with it.

However, over the weekend, my wonderful husband used his off time to help me get the Hippie Hut in order – it was driving me crazy because I can’t do much right now – and one of my projects was to clean out my closets and drawers and donate all the clothes that no longer fit me.

Holy Visceral Reminder, Batman!

While I am working to lose to some weight, it is not helpful for me to have a whole wardrobe of clothing that does not fit so it was the right thing to do.

Still, just wow.

It caused me some distress initially and I’ve really had to process it and decide what to do with those feelings.

Getting rid of those clothes made me realize that some part of me honestly still had a goal weight/size of a 4 again (though that isn’t realistic or healthy for me now). And I also realized that I CAN do that – but not in a way that is appropriate for me with my nutritional needs, particularly when I am already fighting things like bone loss.

So, after taking some time to get my head around it, it was time for some Pinterest-ing (yes, that is a word – I have decreed it thusly) and setting some realistic goals.

As I will likely be on (hopefully) low dose prednisone long term, setting a weight goal isn’t appropriate for me. Just due to fluid changes alone with the medication, my weight can shift ten pounds very quickly.

Also, my chemo dose was just increased, so through the course of a week, I go through a cycle of nausea (eat NONE of the food), chemo coma (sleep ALL of the sleep – think 18 hours), wake up starving for simple food (eat ALL of the carbs – think buttery Taziki’s style rice), and then maybe even another cycle of coma and carbs if the MTX hit me hard. Long story short, there will be no Biggest Loser style “get it in gear, I must lose 6 pounds this week” diet here. I have to be gentle with myself.

What is reasonable though is to say I’d like to stay a size 14 and swim four days per week to feel healthy and strong. When my foot is healthy again, I’ll resume my yoga as well – I miss it.

And I’ll keep working on embracing the curvier me.

After all, I am still ME and I am grateful for my body still working (mostly) and want to do all I can to be healthy and strong.

medical devices

Of course, yesterday I went to the ortho doc to follow up on one of the parts of me that aren’t working so well right now – my left foot.

After three weeks off of it, there was no healing of the fracture.

The options we had were either a bone growth stimulator or surgery.

Honestly, I intended to tell him to go ahead and schedule the damn surgery, as we could do three months of the bone growth stimulator and STILL have to do it.

However, as we – the doc, my daughter, Sara, and I – talked, he mentioned that:

– Β my RA places me at a significantly higher risk for post-op infection (as he told us before)

– Β I would have to stop my MTX and my other DMARD for two weeks before and two weeks after the surgery

– Β I can’t stop my pred (which I knew) and that also places me at a higher risk for infection and impaired healing

– if I get an infection, I will be off my RA meds indefinitely until the infection is completely cleared

– my impaired blood flow increases the risk of infection – but it also increases the likelihood that the stimulator won’t work either – so we are in a bad spot in general there

– he would prefer to try the method that carries no risk (the stimulator) first

He then left for Sara and I to discuss things.

For those of you who don’t know my sweet Sara – and are therefore envisioning your average almost 14 year old – let me tell you that she isn’t. She is incredibly mature – which is why many of her friends are in college – and so smart (with much doctor’s appointment experience to boot). And she had listened to his take and was not on board the surgery train either.

I then messaged my husband and he felt that we should go with the conservative approach as well.

And so we did.

I was informed that the bone growth stimulator will be delivered to my home later this week and set up and I’ll be taught how to use it.

And now I’m off work for three more months.

At least.

I’m not freaking out.

You’re freaking out. . . . . . .

I’m sure I’ll post more about the creature once it’s here and I know the specifics.

For now, I’m going to focus my energy on healing, putting together the best nutrition to encourage bone growth, and doing school work and YL oil stuff, two of my favorite things.

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Wishing y’all a fabulous Tuesday!

Be well, everybody!

Love and light. πŸ’œβ€οΈπŸ’šπŸ’›πŸ’™

3 AM thoughts (and poetry)

Since I was a little girl, I’ve been a night owl.

I like to stay up, reading, writing, thinking late into the night.

And I am the living worst to have to get up early in the morning.

Today marks my 14 year anniversary as a nurse and I’ve always preferred night shift in my work life as well.

Since I’ve been dealing with illness, my pain is even less at night.

As I’ve been spending much time bedbound recently, I’ve been doing a great deal of reading (I hate the stuck in bed part; I adore the reading), including poetry, which I love dearly but often overlook in the busyness of day to day life.

And I came across this poem, that I love so much I just have to share:

The Sleepless Ones

What if all the people

who could not sleep

at two or three or four

in the morning

left their houses

and went to the parks

what if hundreds, thousands,

millions

went in their solitude

like a stream

and each told their story

What if there were

old women

fearful if they slept

they would die

and young womenΒ 

unable to conceive

and husbandsΒ 

having affairs

and children

fearful of failing

and fathersΒ 

worried about paying bills

and men

having business troubles

and women unlucky in love

and those that were in physical

pain

and those who were guilty

What if they all left their houses

like a stream

and the moonΒ 

illuminated their way and

they came, each one

to tell their stories

would these be the more troubled

of humanity

or would these be

the more passionate of this world

or those who need to create to live

or would these be

the lonely

ones

And I ask you

if they all came to the parks

at nightΒ 

and told their stories

would the sun on rising

be more radiant and

again I ask you

would they embrace.

– Lawrence Tirnauer

This one has easily made my top 5 favorite poems list. And prompted me to dig through my library for some of my poetry books that I haven’t gotten around to reading.

As for the rest of my night, I’ve been working on my oil business and also looking at some ideas for next month because I realized that, just as some scary words like “disabled” (in terms of my ability to do floor nursing) are starting to enter the picture, I’ll be able to start seeing health coaching clients in September.

Rather than panic, I believe there is greater timing at play here and it will all work out.

Onward.

Be well, everybody.

Love and light. πŸ’œβ€οΈπŸ’™πŸ’šπŸ’›

changing perspectives

I’ve been learning some new things about my RA this week and having some new realizations.

Yesterday, my pain got progressively worse throughout the day, despite having been to the ER for steroids and whatnot a few days before and being on a taper.

By the time my husband got home, I was in extreme discomfort, and, though I usually keep a handle on things, I just started to crying in the middle of our kitchen.

At that point, I decided, for the the first time ever, that my next day (today) was going to have to be spent in bed entirely (though I have essentially been on bedrest, I have been able to wander around a bit).

Where before I’ve had days where I’ve woken up and realized I was going to have to change plans and stay home that same day and rest more or I’ve gotten sick throughout the day, this time I just knew I was getting really really sick and (at least) one day’s total bedrest was already coming my way in advance.

Β That probably doesn’t sound like a major difference to a healthy person but, to a chronically ill person who has been trying to get things to shift in a more healthy direction, it is definitely a change for the worse.

That, coupled with the fact that my recent labs indicated that I am still in a state of active disease activity (duh) despite being on the chemo drug as well as another DMARD and the prednisone, prompted me to spend today doing some more reading and research.

Of course, I will continue to take those meds (I can’t imagine what this would look like if I didn’t) in addition to my supplements. I will follow my diet as well and practice good self care, including my oils and baths. I will remain open to new alternative approaches.

From a medical standpoint though, it’s time to change the languange I use to describe my disease process. What I am experiencing is no longer a flare/inactive type of presentation. My illness is now in a constant state of activity, where we are really just talking about good days or bad days.

For my own sake, I think accepting that will help me be more prepared to deal with symptoms, as I won’t be expecting symptom-free days when I truly don’t have them anymore.

In addition to reading about my disease process, I did some research on assistive devices that might help with my day to day life. I honestly had to laugh at myself when I got legitimately excited about this one and added it to one of my Pinterest boards:

Yes, that is a cane/chair. Oh, how times have changed for me (and, no, I don’t need that sort of thing all of the time, but on sick sick days, prolonged standing is not my friend).

After some rest, tonight is a bit better overall (though my left foot is definitely NOT better so I’m not sure what to expect from the ortho doc next Monday – we’ll cross that bridge when we get there). I plan to still take tomorrow pretty easy as well and go from there.

I have a pile of books to read, plenty of studying to do, and my oils ready to diffuse.

It will be okay.

I can do hard things.

Be well, everybody.

Love and light. πŸ’šπŸ’™πŸ’œπŸ’›β€οΈ

a love list

Since I’ve been pretty sick recently, my posts have been really heavy.

While that can’t be helped sometimes, I’ve decided to offset that with some gratitude.

It’s time for a love list of the good stuff.

There are so many beautiful things in my life, big and small:

my better half:

our unruly herd:

my beautiful bestie:

dave and dax herring:

mickodemus crookshank brimley herring:

my precious family in love – they are amazing:

my school:

my angel water – la croix:

120 sober days:

hip sobriety and the community surrounding it:

meeting a kangaroo (yes, that totally was a huge freaking deal to me!):

gluten free donuts and coffee:

amazing books I love:

Β 

janis the fabulous bug:

cooking new vegan recipes:

my better half bringing me flowers:

the nutcracker at christmas:

my stuffed giraffe, gertrude:

vision boarding and making plans:

starting my own little oil business (these are the ones i use everyday):

my to-read bookshelf:

and my other to-read books:

And there is just so much more to be grateful for as well.

Though it’s so easy to get caught up in the symptoms and the doctors appointments and the problems, I am trying my very best not to.

Because my life is so much more.

Be well, everybody.

Love and light. β€οΈπŸ’™πŸ’šπŸ’œπŸ’›

the latest from miranda’s spot

For the past week, I’ve wanted to write but haven’t because all I really had to talk about was illness and RA and Lupus stuff and I felt like people get tired of reading that.

However, today, as I was looking on my Insta at what friends in my Spoonie community were posting, I realized that even writing about this experience of being stuck in bed and what I’m dealing with right now may be of benefit to my fellow Spoonies.

It is comforting to know you aren’t alone sometimes.

So, here we go:

The Busted Foot Saga

A week ago, I went to the orthopedist for my broken left foot.

As I wrote previously, he put me in a boot up to my knee, gave me a knee scooter, and told me to stay completely off of it for three weeks.

After the three weeks, as neither of us is expecting healing (we have to do this for my insurance), I will be given a bone growth stimulator. We will try that for 6 – 12 weeks.

If that doesn’t work – and, honestly, with my blood flow issues, I’m not too hopeful – we will do surgery, despite the risks.

For now, it is quite painful, I am a terrible patient, and I am already really frustrated by being so limited in what I can do (which is pretty much nothing).

The Root of the Problem

I’ve written about the weight gain associated with my prednisone – and how it bothers me – but it turns out I have a much bigger problem now:

This is my third break of this bone this year, doing nothing to cause it. That means that the prednisone is weakening my bones.

Huge, huge issue.

And now, come hell or high water, it’s time to stop the pred.

I’m working on coming off of it now – so I am completely exhausted.

Like “need an hour to prepare myself to take a shower” exhausted.

But I know this is normal and will pass and I will be much much better without the pred. I just have to survive it.

For me stopping it means: no more damage to my bones (and we can see what we need to do to repair them), no more elevated lipids, no more massive weight gain (and the weight will start coming off!), no more risk of diabetes right now.

It’s definitely time.

The RA/Lupus Explosion

Of course, all of this stress, combined with changing meds, and my foot hurting and who knows what else (the rain? the heat? the gods are angry?) have all triggered my autoimmune disease in a major way.

Every time I think I’ve experienced the worst pain my RA can throw at me, another flare comes along and proves me wrong.

(I was hurting so badly today that I told my dad when he called that I would jump out my window – but I would just bounce down the outside stairs below and probably break the other foot. πŸ˜‚ )

With this one, the worst joint pain has been in my spine, SI joints, and knees.

However, my left hand is hurting so much with use that I’m having to take typing breaks – never a problem before – and my skin just literally aches. I don’t know how to explain it better than that. Bizarre I say.

I see my rheumy AGAIN tomorrow and am going to push hard for changes. Something has to help me.

Spoonie Self Care

For now, while most of my time is being spent in my spot in bed, I am trying to take it easy on myself.

I am diffusing all the lavender, reading all the books, doing my school work, listening to all the podcasts, and taking all the naps.

Oh, and my appetite has decreased in a big way (thank God!), but, when I am hungry, eating all the carbs.

The best thing I can do right now is take care of me and get well.

So I am.

Be well, everybody.

Love and light. πŸ’œπŸ’šπŸ’™β€οΈπŸ’›

Β 

#fixitjesus (today was that rough)

At the end of last week, my bestie and I made a fabulous trip to the ATL for some girl time and some IKEA shopping.

As always, I love, love, love bestie day – I would tag along with her for yearly income tax and colonoscopy day if she asked me to – and my first IKEA trip was fantastical. I came home with all sorts of kitchen goodies (I am all about some kitchenware), some adorbs new lights for my altar, and a super cute new duvet set (literally $25 – how much do we love IKEA, fellow bargain shopping ladies?):

Such a great day.

Healthwise, though, I had been pretty rough, and, by Saturday, I found myself doing this number again:

The bottom line: low potassium, high heart rate, RA flare, left foot re-fractured. Good times all around.

They pushed fluids, corrected the potassium, gave me steroids to break my flare, and sent me home to see ALL the doctors this week.

So I rested Sunday and we came to today – and what a day it has been.

I wondered how to tackle it all and decided this is a three part, wordy type post.

So, here we go.

My Visit To The Ortho Doc (A.K.A. The Bad News Bear)

As instructed by the ER physician, I called the orthopedist’s office first thing this morning, told them I seemed to have broken my foot again, and asked if they could see me this week. Since they are awesome, they worked me in this afternoon.

Thankfully, school is still out and my amazing daughter Sara is always ready to help me with my appointments – and truly never complains – so we loaded up and off we went.

Some paperwork, a few x-rays, and a short exam later, Dr. Hurowitz delivered all kinds of bad news: It appears that my foot has never fully healed from the first break. And it’s worse now. Also, with my RA, my odds of healing from surgery – because it isn’t a small surgery – without complications are worse than a diabetics – and that is before we factor in the fact that I have severely impaired blood flow in my left leg.

Holy Crappy Medical Report, Batman!

His orders for today? Three full weeks off my foot with a boot up to my knee. And no work.

All of this to qualify me for a bone stimulator – that may or may not work to avoid the surgery in question.

#fixitjesus

Somehow – a miracle (really!) – I got out of there, with my boot and prescription for my knee roller thing-y, and without the panic attack or crying spell I felt coming on, and Sara and I went and picked up my new friend for the foreseeable future:

We have since gotten home and onto processing the other issues of the day (though I still don’t know what to think of this downtime).

Pain Management

I’ve written recently about pain management among the chronically ill and, in particular, about a suicide in our spoonie community directly related to unmanaged pain.

This morning, I woke up with no pain medication, with my knees burning, my spine on fire, and my broken left foot throbbing.

And, honest to God, my first thought was, “If I had to do this everyday, I couldn’t.” And that is the truth. It’s too much.

Of course, as an established patient, I got to the doctor, was examined, and was given appropriate pain medication.

Still, my god-awful awakening reminded me yet again to keep yelling from every stump I can find to yell from that this is a huge problem for so many spoonies.

So many patients can’t get the help they need. Or they aren’t taken seriously by medical staff. Or they don’t have the health coverage to be seen in the first place. There are many obstacles. And they go untreated. And it can truly be fatal.

And, as long as it is a problem, I will never stop speaking up.

Living in such pain is no life.

It is unbearable.

Everyone deserves access to appropriate healthcare.

End of sermon.

Heartbreaking News

I saved the worst for last.

While we were in the waiting room to see the ortho doc, my daughter got some terrible news: the older sister of one of her friends – a sweet young woman we all know – died from a heroin overdose.

I am just heartsick.

I am devastated at the loss of someone who was truly just a baby.

I am upset for her family and for my daughter and for everyone affected.

Also, as a mom, when something like this hits so close to home, I can’t help but feel my own chest tighten as I worry about another of my children who struggles at times with being a follower and not making good decisions.

It’s just an awful situation.

And there is no fixing it and nothing to make it better.

It’s just terrible.

And, as always, my alcohol and substance abuse spill is the same:

If you are struggling, help is available.

Please, please take it.

If you need inpatient help, even if you don’t have insurance, go to your local emergency room. They have resources available and they WILL see you.

Don’t wait.

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Needless to say, I’m wiped after this day.

I am going to finish my nerdy documentary and read for a bit and get some sleep (tomorrow is a three appointment day).

Be well, everybody.

Love and light. πŸ’šπŸ’™πŸ’œβ€πŸ’›


yay for my lil’ business!

As I’ve found myself sidelined by a broken foot – AGAIN – I am super stoked that my business cards came in:


And my website is up and running:

https://www.myyl.com/mirandaherring
Instead of being super bummed about my foot, I’m going to spend this time focusing on my oils and learning more and working on my school stuff as well.

There is always a higher purpose.

Be well, everybody.

Love and light. πŸ’œπŸ’šπŸ’™πŸ’›β€