Tag Archives: health

Merry Christmas… contemplation

Christmas Morning…

Coffee, listening to fluff audio books, thinking…

It’s Christmas.

Christmas has devolved from the traditions of thirty something years… of fifty something years… of… whatever… into… five dogs, two humans (both pretty much mostly lost) and a sixty five degree day. Evolution into a new set of whatever kind of new traditions we are going to be chasing.

Sky is in New York with his family of choice.

So many losses… so many being (human and not) being missed.

Contemplation…

Christmas dinner, today, was Korean Hot Pot (kind of liking the restaurant we ate at… but it would have been nice to have any of the bubble teas).

I cleaned the kitchen.

Started a new batch of Pineapple vinegar (I really really hope that adding in the mother to the jars will help with it… no mold… no mold… no mold).

Three loads of laundry.

Two loads of dishes.

Putting some of Granny’s Snoozle Salve on Meatball’s and Ellie’s snoozles (and Roxy’s calluses) to see how it helps with the healing. 

What do I want to name the different concoctions that I’m going to try selling… that I’m going to keep making because I’m loving them. Vapo Rub… Dragon Balm… Snoozle Salve… Joy hand salve… Pine hand salve… and Sweet Dreams balm… If nothing else, I think I’m going to keep making these concoctions… maybe adding in a bit of drawing salve. I’m really loving these recipes. I’m at the edge of tiny batches…. I will need to figure out how to bump up the recipes (and the heating source) to be more than a half pint at a time. Chatted with sister sue about flu bombs, onion cough syrup, garlic honey and my interesting things I’m making. 

As the year creeps to the end… I started my temperature ‘thing’ to crochet for 2024. I have tried to make a temperature blanket before and it really doesn’t work for me. I don’t think making a new blanket will cut it again… I’m never able to do that past mid February. This year, I’m going to make a temperature snake. I made his head this morning… he’s sitting here waiting for New Year’s Day to dawn bright and (by the looks of it) colder. Looks like Theo The Temperature Snake will start out with a couple rows of dark blue!

This Christmas has my heart hurting in a lot of ways… but it has my year ending with plans and hopes. 

Now, to see what 2024 has to really hold.

AprilJoy
12/25/2023

Doing It Yourself…

Sitting here, recovering from the single longest on call week I think I’ve ever spent. Smores coffee (from yesterday in the percolator), Rebirth of the Sun Ambience (youtube), and the doggoes are my morning company. 

I completely enjoy quiet mornings like this. They seem to come too few and far between. When they do come… it helps immeasurably. But I always end up waiting for the other shoe to drop and something, or someone, to help everything come crashing down.

The last few days I have been using my generic “muscle balm” because my name brand Tiger Balm ran out and the off brand was cheaper when I went hunting it. Even the off brand is a bit pricey and none of what we can get in the US matches the amazing stuff I bought when we were in South East Asia. Apparently the FDA limits the amount of menthol and camphor that can be in ours. 

A guy at work told me (SEVERAL years ago) that you can buy the menthol crystals from an Indian store, melt your US Tiger Balm and add in the extras, but I could never get a good ‘try this amount’ idea, so I never tried it. 

I found out that the stuff I have relied on for like ever when my hands start screaming is toxic to dogs. If you have it on your hands, before you be near your pets, make sure you wash your hands extremely well. Uh… I use it when my hands scream… washing it off is counter productive.

Tiger Balm was always my ‘go to’ before the Dr prescribed the stuff that will probably kill my dogs, so I’ve been falling back to that. 

And it works.

But the jars are SO freaking tiny. What is with that? I love that I can toss it in my “makeup bag” (the one that I carry all of my portable medicinal crap in) and it doesn’t take up much room. But it’s almost always on the shopping list. 

AND, if you look at the ingredients list on, at least, the off brand I have here… there is petroleum in it. Yeah, yeah, I get it. petroleum is cheap and lord knows it is SO freaking plentiful… I mean, it’s not like we can run out of it or anything. 

Sigh

WAIT… wait wait wait…

Dr Google to the rescue.

There are a metric crap ton of places where you can get DIY versions of almost everything. I was very good at my online retrieval class at Pitt. I bet I can couple searching for DIY versions with digging into what and how much would be applicable to my situation… bump up the menthol and the camphor just an eensie bit (too much, it turns out, can be a bad thing, health wise but is it two extra crystals or three extra crystals that will send you over the edge… thinking… thinking… thinking… ).

I stumbled onto Jenni Raincloud’s website and went down a HUGE rabbit hole. She has the most amazing DIY products. A DIY for Tiger Balm (yes, I messed a bit with her recipe but not much), one for vapo-rub, one for “vaseline”, and a metric crap ton more things for in the ‘medicine’ cabinet. 

And the ingredient list is… you know… stuff like coconut oil, olive oil, bees wax pellets… essential oils…

Not a whole lot scary in all of that… and holy freaking crap, I have a bunch of it in my cupboard already.

So, yesterday, while I was sitting at my desk during my 12 hours of work on my 7th day in a row trying not to completely and totally lose it with everything… I started a batch of the DIY Tiger Balm. Enter crock pot, glass measuring cups and canning jars.

It takes for freaking ever for even the pellets of bees wax to melt in a water bath in the crockpot but on the up side I don’t have to worry about watching it like a hawk and having to be RIGHT THERE stirring it all the time.

I bumped up the menthol crystals by half again as much.

and I added an extra 5 drops of camphor

and viola… my first batch was made. 

I was a little worried, since when I took the lid off it didn’t smell as strong as what I was used to, but putting it on my neck and hands… It’s pretty much exactly what I was after. And for less than what a .63 oz ‘jar’ would cost me, I made a half pint jar. The jar and the lid cost more than the ingredients. 

Yeah, I had to buy some of the oils, because they weren’t in the <much sarcasm> treasure trove </sarcasm> of essential oils that I was sold a while ago, but oz per oz, dollar for dollar, I can make a batch of this that FILLS a half pint jar for less than a dollar.

So… since I already had the ingredients, once the stupid bees wax pellets melted and I jarred up the balm, I decided to make vapo-rub. 

Again… less than a dollar. Added in a little Shea butter that I already had… and poof…

And this dark, windy, cold, wintry mix morning there is a batch of “vaseline” (can’t actually call it petroleum jelly since there is zero petroleum in it) melting in the crock pot. Looking at the ingredients for pretty much all of the recipes on Jenni’s website, it looks like if I just make up and put away a few jars of this base, I can melt it down and tinker with it (adding in whatever essential oils are needed and maybe some Shea butter) to make almost anything. 

I’m thinking that my next investment is going to be comfrey essential oil (yes I know… ew ick… comfrey is poisonous if consumed in large doses… much like sassafras is too) to make some healing salves… and some activated charcoal capsules and bentonite clay for drawing salve.

All in due time… all in due time… but for now… this morning I put on my balm when my hands started to complain (too much ‘doing’ not enough resting)… and here we are.

Will I still use napproxen? Yeah. There are times when it takes a bit more to make the hot glass shards that feel like they are in my fingers… wrists… elbows… shoulders… quiet down. But for the day to day stuff… I have found my new go to.

Now, to find a supplier of smaller jars to carry some around with me… and maybe put it out on my table next venue I’m selling at… see what the legalities there are…

Love and Light

have a magical day

AprilJoy (AKA… Granny of Granny Fricket’s Thicket)

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Sunday Morning Contemplation

This gallery contains 10 photos.

Sitting at my kitchen table, coffee in hand, spending some time spending time. Dog Channel is playing… the ocean through the sea grass… sunrise… the dogs could honestly care less about Dog TV, I keep it for me. And it … Continue reading

Methotrexate… a rant…

Okay, so I gave you fair warning.  This is a rant.  I try not to let it eat at me and fester, but there are just some things that are so irritating that I have to let lose.  THIS is one of them.

Methotrexate has always been kind of a sore spot with me (not to… you know… make bad jokes about stomach shots and stuff).  For a while I had a hard time finding a store that had sufficient available Methotrexate (liquid) to fill my prescription.  It isn’t a profitable drug.  Passe.  So the makers don’t always manufacture sufficient.  Or there is a mass recall (this has happened more than makes me comfortable).  Add to that, my DOCTORS have suggested that I would be better off using the “with preservative” kind and have written my scripts as such.

Most pharmacies don’t have a problem filling what is written.  Most… If they have it.  I’ve had trouble with one chain in more than one city… in more than one state… in more than one TIME zone… when it comes to this drug.

In Texas it was ‘suggested” (okay… they told me flat out) that they don’t carry my medication as it is written.  I need to go BACK to my doctor and MAKE her write my script either as pills (which make me really REALLY sick) or as the injectables that they DO carry because the company they happen to chose to use doesn’t carry the with preservative vials.  So… I said that they wouldn’t be my pharmacy, I trust my doctor and it is HER job to write what she wants me to take… not theirs to prescribe what they want to sell me.

Now I find myself insured with a company and the pharmacy that I HAVE to use for maintenance drugs (which, despite the fact that I take MTX every week and have for three or four years now, apparently this isn’t… ) is… yep yep yep… the one that doesn’t like my MTX script.

Skip forward to yesterday.

Dr called in my refill.  One month supply, 4 shiny little vials (except the doctor thinks she’s calling in two moth supply… blood test to blood test) came from the pharmacy.  Bear and I got into a lengthy text message conversation about the meds.  He said the bottles didn’t look like what I’ve been taking.  They didn’t.  They say preservative free on the vials, so I got a one month supply, half of which I would be throwing out, and the vials are bigger and a different shape than what I use.  OH… and they are twice the dose I use.  The ones I take are 25mg/ml the ones they filled are 50mg/ml.

Now, I’m not a pharmacist or anything, but I’m good enough at math (it was one of the dual minors on my undergrad degree) to know that 50 is kind of a bigger number than 25.

I called the pharmacy.  They don’t carry my script and TECHNICALLY the doctor didn’t say it HAD to be with preservative.  They GUESS (they guess???) they can TRY to get what I take to fill my script NEXT month, MAYBE, but only if the doctor SPECIFICALLY says they HAVE to.  Otherwise they will give me what they like to sell not what I take.

What do I do with the drugs I won’t take?

Toss them they guess, they can’t do anything with them.  WE left the store.

The guy on the phone laughed at me.  He thought it was hilarious that I was calling him about this.

I called the insurance company.  The part of the company that handles the prescriptions.  The part of the INSURANCE company DIRECTLY AFFILIATED with the pharmacy (which is why I HAVE to use them for maintenance drugs) because I was concerned with being laughed at and being told that there is NOTHING they can do until they get a different prescription.

And I had questions about why (maybe the doctor changed what dose she wants me to take even though I’ve been mostly controlled and even though when I was there she verified my dosage) it was 50mg rather than 25mg.

The insurance company showed that 25mg had been billed in Feb and (GHASP) yeseterday.  25… 25… yeah… the right dose.

I was also informed that MTX is apparently not considered a maintenance drug, so I can get THAT filled anywhere I like.  So I’m going back to where I can get what I take without argument or stress.

I don’t understand why they think it is okay to mess up my meds.  And I know it isn’t personal.  They mess up meds for lots of people or it wouldn’t be such a joke.

My MTX… taking twice the strength might make me feel crappier than usual for a day, but it probably wouldn’t do any real lasting damage.  But other people take other meds.  They RELY on pharmacies filling the scripts RIGHT.  They might not realize the dose is doubled.  What then?  Not everyone has a George Bailey looking out for them.  Not everyone triple checks the labels every time (okay, MOST times).  What happens with them.

he he he… ooopsy?

shake my head… you are dealing with LIVES… it’s really not that funny.

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Because It Makes A Difference

So, I’m sitting here having a text message conversation with someone who I used to work with. She is 4 months down the “just diagnosed” trail. Prednisone for 4 months, MTX for 4 months. She just switched to my Rheumy … Continue reading

Orencia Infusion Week

Started out to the gym this morning. Turns out they are only open 24×5 and open at 8 on the weekends.  So… a 14 mile round trip wasted at 5 am.  Sigh.

Got home and started working on stuff at home… crochet projects I want to get done, have to get done, enjoy working on… writing… answering pages on pager patrol… I realized that my knuckles ache this morning.  I also realized that they should have ached a few days ago if the last few months were anything to go by, so I’m thinking that I’m continuing to improve.

So, right now, I smell of Tiger Balm and thinking that I’m really glad that Tuesday is my infusion day.  I’m waiting until 10:30 to take my Delsym so I can hit the gym when I take my little girl to work and get my tummy shot when I get home.  I’m dwelling on trying to get better… because I need to get better for me.

On Bedside Manner

I’ve been struggling with the bedside manner of doctors and their assistants for the last few days.  I’m not sure if that class isn’t required in medical school (you know the class, your patients are humans, they have feelings and you might want to remove your foot from your mouth BEFORE you speak and make everything worse) but I know there are a whole bunch of people who obviously flunked it.

I have a shiny new ENT.  I needed the ENT because without his approval that I don’t have Staph any longer and that it wasn’t MRSA and I’m good before I could get the Orencia infusion I was scheduled for last Tuesday.  I went.  I listened.  I answered all the questions honestly (I think that was my first mistake).  Dr looked me over and promptly told me that my face is deformed and that makes it defective.

Really?

They taught you that in medical school.  Tell your patients that they are deformed?  My new theme song is Hunchback’s Outcast.  Actually… it pretty much was before that… I’ve come to embrace my freakdom and realize that sometimes being an outcast is a really good thing.  It means I UNDERSTAND… but I digress (go figure).

So… one doctor told me I was deformed and defective.  Fail

Called my Rheumy office THREE TIMES to make sure they got the ENT’s report so I could get in to get my infusion just one week late (Like the Rheumy promised when I left without it LAST week).  The PA finally actually CHECKED the fax machine… Friday… oh wow, it’s here.  Sorry… grrrrr… well, you won’t be worked in this coming Tuesday, we are already double booked, and next week doesn’t look too promising either and we already cancelled your next two appointments because you didn’t get your last infusion on time. Sorry.  I will talk to the doctor and find out when we will be able to get around to working you back into the rotation.

It would maybe have come off better if she had SOUNDED like she gave two shits about me getting back in or the fact that the antibiotics the ENT gave me kicked me into the mother of all flairs.

The “gee, sucks to be you” tone sent me into a good thirty minutes of crying in the car (sitting in the parking lot of the boob squisher’s where I made the call to the Rheumy.  I know they have to double book the lady who does infusions.  I knew I was taking my chances of getting in anyway.  But the “I really don’t give a shit” tone just sent me over the edge.  It wasn’t MY fault I didn’t get my infusion. I was there, I was healed from the Staph, I was more than willing to get my infusion.  YOU people sent me away.  I did what I was told.  I’m DOING what I was told. Curb the bitchy attitude and learn that you are the PA not the principle at a Catholic School reprimanding me for being a bad person.

Okay, I understand that I frequently take things badly and that I react to the way things are said.  BUT I know that I’m not the only one.  AND I know that you CAN learn how your words sound.  I know that these people have a LOT of education.  I just wish that people skills were a little higher on the list of must have classes even if your dossier does say that you can part the red sea and turn water into whine (yeah… whine, not wine… bite me… it’s my homonym!).

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But You’re Too Young

Have you ever heard this?  From family members?  From doctors?  From well-meaning coworkers?  It doesn’t necessarily have to be about RA (or autoimmune disorders in general) but can really be about just about anything.  In my case it is about … Continue reading

Backsliding

So, Sunday I finished the half marathon again.  It wasn’t easy.  It hurt.  And my time was way off.  And I realized since then that there is a good reason for that.

I am now just as bad as I was the day I was diagnosed (maybe a little worse).

All of my toes, my ankles and one knee are involved.  The Rheumy said that she would buy into the fact that it was post half marathon swelly squishiness but I only ran on my feet, and my fingers (all joints) and wrists and elbows and shoulders all seem to be involved now, too… and I didn’t run on my hands.

She was going to keep me on what I was on before and add in Plaquinil… but that will really only help if you have a couple of joints that are being difficult, not if you have back-slid to way where you were before.

So, I’m going to be starting (if the insurance approves it) infusions of Orencia in the next couple weeks.  IV drips for 30 minutes every 2 weeks for a month or so then once a month.

I knew my hands have been hurting a lot.  I’ve been toughing it out a lot.  Using a lot of Tiger Balm (like it is hand cream) and taking a few more Aleve than is probably prudent.  I guess there is a good reason.  There is a good chance that my hysterectomy changed my body chemistry enough that the Humir a just gave up and now I have to work through whatever it is that is pissing my body off.

The adventure continues.

I did finish though and I did get the bling.  I’m scared I will never get to do Disney now… and I have to do Disney at least once.

It’s my Self-pity-party and I’ll whine if I want to

Am I REALLY that weird?

And before my kids (on the off chance that either of them actually read this) have a chance to chime in, yeah, I realize that I’m really kind of that weird in MOST ways… but… am I REALLY that out of the norm?

I don’t think I am because I’ve talked to people at work who are “like me” and they are a lot like me.

I have RA.  Duh…
I hurt (big shock there).  Some days more than others.  Some days really nearly approach what I can remember (from half a decade ago… when normal might have been).  Some days it really is like someone poured crushed glass into my joints.  Most days I ache but I can take enough of the edge off to not let it rule my life.

Thank heavens that I’m not disabled… at least not yet.

I have days when it depresses the crap out of me.  Again… duh…

But as a general rule, I figure dwelling on the why me… being debbie downer… why waist what energy I do have on being whiny about it?  They say it takes fewer muscles to smile than frown.  Fewer muscles, less work.  Logic dictates that means that if I smile (even if I don’t FEEL like smiling) it is less work.

Shutting up is less work than bitching.

If I can lose myself in music (irrespective of what the music is that I chose) then I’m losing myself and not getting upset.

I understand that there are times when you really just need to dump on people who understand.  Hell, sometimes you just need to dump, it doesn’t matter if it is on someone who understands or not…  but I just don’t understand how can anyone spend so much time dwelling on the worst part of their lives?

Maybe I am that weird.  I know that when I’m in the middle of a flair, I TOTALLY don’t feel like being mary sunshine.  But I keep remembering… Whether you think you can or you think you can’t, you are usually right