Tag Archives: RA

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)

When you think the ‘cure’ is worse than the condition

It’s infusion day. I am SO glad, this month, that it is infusion day.

I’ve probably been pushing too hard (let’s face it, that’s kind of a given).

Stress has been high.

But I think part of why my hands are SCREAMING right now is because I went to the dermatologist. Apparently a tendency to accumulate warts is a thing with RA. Who would have guessed. Shocking I know. But I’ve been acquiring several (they treated 8) and the ones I’ve been acquiring have started to become problematic. So five months ago I got the first available dermatologist appointment I could get. She froze my warts and gave me instructions on what to do as aftercare (soak hands 20 min in the evening… emery boards to file them down… salacitic acid…) . Blisters are a good thing! Nope. The freezing hurt like a… well, you know the rest of that saying… but man, after the pain and stinging of the freezing… the blisters really are hurting.

And… I’m pretty sure that contributed to the flair.

So, I’m sitting here, thanking my lucky stars it is good drugs day… slathering on the Tiger Balm (because it turns out that Voltaren Gel is bad for dogs and I can’t very well wash my hands after I put it on when my hands are what is screaming)… and considering if it was really worth it trying to get the stupid warts under control.

It was. I know it was.

But damn… there are times when I really believe that the cure is worse than the condition in a lot of cases.

I keep thinking things can’t possibly get worse. Eventually life has to start not sucking, right?

Counting down to Thanksgiving and hoping to maybe go to Denny’s… and Giant Eagle for some Turkey legs to smoke on the grill.

AprilJoy
11/16/2023

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Stress… change… parties… doctors… and taking a deep breath

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O-Dark-Thirty… listening to iHeart radio on the Echo Dot my boss got me for Christmas. I was kind of looking for a gift card, but I’ve decided I really like this option better. I don’t have to use my phone … Continue reading

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On Finding Thursday’s Normal

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Thursday is 9 degrees of sparkle on snow, a fullish moon, pictures through icicles, chocolate raspberry truffle coffee, 20 milligrams of prednisone and 1000 milligrams of napproxin (yes, I know that is too many) and it is one day closer … Continue reading

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Morning in week 6

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So, here I am… it’s quiet and it’s dark and inside I’m screaming.  I’m tired and I hurt. This morning I caved and decided to take napproxin.  I have been gritting my teeth for days and I’m getting to where … Continue reading

RA Reminds us that it’s there

I’m sitting looking out over the snow in my yard.  There is a woodpecker munching on my suet feeder.  There are chickadees and titmouses (titmice?) grabbing some of the sunflower seeds from the clear plastic feeder that is stuck to my window.  The squirrels are, apparently, huddled in their nests somewhere because they really haven’t been making much of an appearance this morning, yet.  It’s really a pretty morning.

I’ve been fighting hard to get completely over the flu from December when… WHAM… Bronchitis from January derails any hope of my January infusion being on time, if happening at all.  The antibiotics aren’t really helping an awful lot.  My infusion is a week late now… my MTX has been put off for at least last week and this week and probably next week.

This morning, the stress of 70 hour weeks and forgetting to go pee, let alone eat and putting sleep off in the interest of “Git ‘er done” has all contributed, this morning, to my fingers and wrists screaming about whatever has been going on in my body.

Stress is really kicking my behind.

I try not to.  Honestly I do.  I try meditation.  I try not bath.  I try walking.  I  put bird feed into the big giant bird feeder out front, and I kind of melted down in the kitchen on the floor because I could not make my hands get the roof back on the bird feeder.

Stress is RA’s evil insidious little friend… and just when you think it’s safe to take a breath, something happens and your body rebels.  Stopping the drugs that make your immune system dumbed down so your body can heal from the sick just pisses off the rest of the immune system and WHAM… it comes screaming back to remind you that it is SO there.

Prednisone… I’m turning to you again… not a huge dose, but one that I really really didn’t want to have to start taking.

Twas the Day After Christmas

Sitting here in the livingroom smelling the remnants of yesterday’s fire, Christmas tree for company and Mythbusters on TV. Pumpkin pie and coffee…  I started my work day early today trying to get ahead of any curve that might be coming my way when “normal” people come in.  Something tells me it’s going to be a long day.

The flu brought on a flare.  My fingers are not happy and my knee/ankle/foot combination are very very not happy.  I’m thinking that working from the couch with my feet propped up on the coffee table might be my very best bet for the day.  Yesterday my knee/ankle was very bad by the end of the day.  Bear barely bumped my knee and I winced in pain.  I sat on the floor watching the turkey for the last half hour of the turkey cooking time… watching to see if  I could see the timer pop up.

The turkey was very very greasy.  The skin wasn’t the yummy crispiness that Thanksgiving’s was.  But it was a good turkey.  The ham was ham.  Dinner was really good, though.

Today, I’m thinking back over the last year, trying to psych myself up for the rest of the day and trying to be gentle with myself.  Tiger Balm fills the air.  I have checked the weather report fifty times.  It’s not going to get cold.  I’m almost as disappointed as my son that the weather refuses to turn seasonal.  It’s going to be 47 degrees today.  It’s going to top 50 again tomorrow.  I really really want to see the cold and the snow.  Logic dictates that there is lots of time for the season to turn cold but Christmas is Christmas and it was far from white.

The holidays are not over yet.  There are still hours and hours of potential stress and festivities.  Whatever you do, remember to be gentle with yourself.  Be gentle with your body and take time for absolutely nothing… it can certainly pay off.

What did I learn from having the flu?

— be very VERY careful in a race situation.  You come into contact with the germs of thousands of people and, an already compromised immune system, germs are germs.
— no matter what anyone thinks, the doctors, the CDC and the vaccine manufacturers all agree… the flu shot is reasonably effective in lowering your chances of the strains of flu that are included in the vaccine, not the ones that aren’t.  It will not prevent the flu and anyone who comes up with the snarky remarks about you should have gotten the flu shot and you wouldn’t have gotten the flu if you would have just been smart and gotten yours is full of… um… themselves.  BUT this is assuming that the CDC and the Doctors are a little more edumacateded up than Lucy Lou and Skippy down the street are.
— the flu sucks.  All kidding aside, I don’t ever know if I have hurt in that really horrible all over hurt worse than the day I actually came down with the flu.
— when they tell you it takes a week or more to feel better, they aren’t kidding.  It takes a week.  And with RA tossed into the equation, the absolute exhaustion and continued run down feeling hangs on even longer.

If you have a compromised immune system… get the flu shot.  The more variables you can take out of your health equation, the better your chances are of getting through the season without coming down with something that could land your butt in the hospital (or worse).

And… it’s time to get on with my day.  I hope I’m wrong about what is going to hit the fan today with everyone out of the office… but… for now, I’m going to try to get done what I can while I can.

I hope you all had the Merriest of Christmases.

Socks: a retrospective

It’s scary how much time I end up spending thinking about some things since my RA diagnosis. I know that, along with my RA came Raynauds as a secondary condition and that is a huge contributing factor to the fact that my fingers and toes are always cold. But it still strikes me as odd to think so much about socks.

When they clearance the winter stuff and the “spring line” starts to come out at the stores, I always go looking for wool socks. I don’t just wear them in winter. I sometimes wear the pretty socks or the business socks in my drawer, but I’ve fortunately acquired enough wool socks in enough colors that I can rely on them to get me through on days when I know I’m feeling cold. And AC can make my feet and fingers freezing so it is as many days as not.

I recently discovered wool and silk blends and got a couple pairs of them that I absolutely love. They are soft and warm and stay up! Staying up is a problem I always have when I buy the 6 or 8 or 10 packs of athletic socks at WalMart. After a couple washings they start to fall down around my ankles, and they are knee socks or at least over the calf socks. I hate the feeling of them slid down. And that feeling is so not like just buying and wearing ankle socks. It just feels wrong.

This morning I put on the no slip hospital socks that bear got when he had his colonoscopy. They didn’t actually make him put them on and he wasn’t going to bring them home because they are just funky. No slip grippy stuff all the way around and tube socks. They are pukey brown and have an idiot smiley face staring out of two opposing sides. Who thought these up? Because having your feet smiling up at you when you are in the hospital is going to make you feel so much better? But socks are socks and they came home with me. And this morning they are keeping the chilly off my feet.

Who thought up putting registers on the wall to blow on your feet? In the summer, the AC is just too cold on your feet, and in the winter you want to be warm all over not just on the floor. I know I know, hot air rises, but it still feels counter intuitive. I was raised in a house with a coal furnace. Registers go in the floor blowing straight up… all the better to dry your hair in five minutes first thing on a snowy morning!

But I digress…

If you tend to have cold extremities, you know how important it is to find the warm. I love my Injinis toe socks especially in my Vibrams five fingers shoes (Go Hobbit Feet!!!) and the wool toe socks that I bought last fall are still holding up remarkably well. No holes. Still going warm.

I don’t understand why the 6-8-10 pairs that you get at back to school time don’t hold up any better than they do. I mean, I get planned obsolescence, but geeze… it just makes me want to not buy them at all.

I get that socks are a fashion statement and everything.  And I get that companies have to make money.  But I would far and away rather buy something that is going to keep me warm (which I think is what they are supposed to do anyway) and hold up without my having to add in elastic later than to just buy the cutsey or the garbage.

I can’t wait till gloves start showing up at the store (any day now). Since texting has become a big deal for everyone, and the gloves to facilitate have too, I can now use gloves with fingers all day long on my laptop! Technology is starting to catch up with what I’ve needed for years.

I wonder what colors this season brings!

It’s all in the timing…

OLYMPUS DIGITAL CAMERAOkay, There comes a point where I have to remember to shut up and listen. I know I realize this periodically. Life has been reminding me of that quite a bit lately.
This morning, I sat waiting for the lift bridge and for not one but two freighters to go through the Cuyahoga river. I realized that I live in a city replete with lift bridges and drawbridges… and with a river like this there comes the necessity of occasional pauses in the day’s hurry scurry, helter skelter bull…$%^&… There are times where a pause is just a pause and the pause is exactly what is needed. Time enough to watch the smoke stacks of the boats make the bend… to hear the birds and the metal on metal screech whine toot of the trains… to see the bright yellow canary in a bright yellow flower… to take a slow deep breath (or twenty or thirty) and relax. Was I late? Yep. Was it all good? Yep.
It’s funny… I had just gotten off the phone with my mom when I got stuck in traffic. We were talking about being where you need to be… where you are supposed to be… and… thoink… duh…
I was hired at US Steel because Ida Flynn told me that I was GOING to go test for the Internship at US Steel the ONLY semester I could actually qualify the ONLY week I could actually test (given that we went on vacation) in a college career that was end to end in 2 years and 4 months. Yes it is possible. Yes, I regret not doing it slower because my QPA would have been better. I swore I would never work in a big city. I worked in downtown Pittsburgh. I was department lead for the Y2K project with 12 contractors and I had an incredible implementation. It was such a good job that I was “rewarded” with being transferred to the iron range of Norther Minnesota. Which is beautiful and where I saw eagles and heard loons and I watched the northern lights.
I was told when I left US Steel that I would regret it. I don’t. It’s ironic.. .the boats that fascinate the crap out of me now are the ones that left the port of Duluth carrying Ore… the pellets we made that came from the dirt we blew up. I don’t regret it. I miss the northern lights and listening to the lakes freeze in November, but I don’t regret either going to MN or moving from MN. I learned how to be an Oracle DBA in Mt Iron and that backup and recovery are the most important parts of the job.
I left there for Amarillo. SMALL company… friendly town. I was hired as a DBA despite having no REAL DBA experience, because I was trainable. Turns out Trisha was right. I am trainable. I learned to be a good DBA and I learned (in 900 hours in 3 months) to be an Apps DBA. It meant I lived my dream of publishing a book and it laid the groundwork for the next steps. The company was acquired by a huge company in Chicago and I went looking for not Chicago.
Poof… Austin… BAD company to start out with… then Oracle… then another company where I lost myself. Where I learned that I have the ability despite RA to bust a move and walk a half marathon or four. My first I hurt so bad I almost quit yards from the finish line. My second, my son medaled me despite the flu. My third bear and squirrel girl did with me… and I thought I was going to not make it… and I walked in with my son and (even though I still don’t think I’m anything special) I became his hero. And because I understood what forever conditions mean, I was able to cope when my daughter got Epilepsy, when my son got epilepsy and when my son got Sjogrens… and when friends ended up with RA, I was able to be there, to tell them that it is not the end of all normal and to get their butts into the doctors. It took some time for me to get my head around the fact that Autism isn’t the end of normal, it is just a different normal and that sometimes when you get answers to all of the hard questions in your life you can take a deep breath and relax and be your own beautiful self. I’m incredibly proud of my little boy who just took a deep breath and became himself.
And now, here I am. Because I was incredibly frustrated with being told how worthless I was I started looking for elsewhere to be. Because I was scared that the 412 area code on my phone meant that something was wrong with the family I answered the call… and despite not believing that I was in any way qualified I took the chance. Despite getting horribly mixed up in the first phone screen with contact information, I made it through that. Despite feeling like I blew it by not knowing current technology in my first technical screen, I made it through. Despite throwing up all over town my all day interview went remarkably well. And despite being terrified of leaving my baby behind in Texas and moving half way back across the country and not knowing if I would let myself and my family down, here I am. I am in the Cleveland Clinic medical system. I am back near “home”. I have found a house that was waiting for me. I am settling into a job that I really enjoy.
I am where I need to be to help family understand. I am where I need to be to allow my little girl to find her wings and to allow my little boy find his feet and his wings. I’m so very proud of my babies.
Looking back… looking around… looking at everything… I realize that I am right where I am meant to be. everything is working exactly as it should. My job is to breathe… to be kind to myself and to quietly do the needful.
Nameste

I love you mom… I’m listening…

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Finding an Oasis

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So, this morning I’m sitting on some amazingly to DIE for chairs.  I want one for home.  I want several for home.  I don’t know where to get them but I want them.  They are huge round wicker “chairs”… my … Continue reading