Category Archives: Health

Doing It Yourself…

Posted on December 18, 2023 | 1 comment

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…

  • DIY Achey Hands Balm
  • DIY Vapo Rub

Love and Light

have a magical day

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

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And… Just Like That… Normal…

Posted on May 18, 2021 | 2 comments

Sitting on the porch in my hoodie listening to the birds come awake with their songs trying to keep my head from completely exploding.

It’s not working.

Saturday I got a letter from The Hartford (the company that we pay to process the ADA paperwork for not going back to the office when only 41% of the people in my county are fully vaccinated) saying that my work from home was permanent. So I asked HR what exactly permanent meant… permanent for 30 60 90 days or what the paperwork actually says permanent permanent. They told me that, despite my ruling that work from home is permanent, The Hartford is wrong and they are re-examining what my doctor’s paperwork REALLY meant and I guess at some point I will be made aware of which day exactly my ADA is done and I have to join the throngs of people streaming back into work.

Few hours later the edict came out that it’s going to be business as usual and they are taking away the elevator restrictions, the cafeteria restrictions, the meeting room restrictions June 2 but are keeping for a couple more weeks the restriction on EVERYONE flooding back in to work. Masks are no longer required (effective immediately for fully vaccinated and everyone if they decide they don’t want to wear one) but if you choose to wear one no one is allowed to make fun of you… yeah, that’s going to work… July 12 everyone will be welcomed back to the offices. It would be nice if everyone were to be vaccinated but that is only kind of a suggestion and not a requirement… but you can pack a dozen people into the elevator knowing that at least 7, statistically, are currently not fully vaccinated. I will need to figure out what stairwell will be open to take the stairs… and I will likely start losing weight again because I work on the 17th floor.

They are working on a flexible working policy. Sometime next week we will probably be made aware of what that is going to mean. I know that I will have to go back to working at work at some level. And I miss my boats. But knowing that I will have to go back to “normal” at some point… whatever my normal will look like… is one thing. Knowing that people who have been vaccinated fully (nurses at the facility where a friend of mine works) have been getting COVID anyway is scary. Knowing that, at best, people like me (on immunosupressants) are likely 65% covered according to my Rheumy is scary. Knowing that Rheumy said that COVID will be around forever like the flu and that there will be flu shots and COVID shots and pneumonia shots like there are flu and pneumonia shots now and that they are already working on the fall booster for the shots we already have taken kind of helps my head a little but only a little because I know an awful lot of people don’t get their flu shots now and if COVID keeps having so many variants what is that going to mean for forever. Knowing that I will join many of my friends and some of my family in always having a mask with me and wearing it when I’m in close proximity to other people… indoors a lot because of HVAC and people and that there will be people who make fun of me for it is kind of sobering.

It’s been nice only having to deal with seasonal allergies for the past 16 months. No cold… no flu…

So I sit here and enjoy the morning as long as I can… knowing that I will need to address reality as soon as reality hits. I have a race in 12 days… and in person race… and with the new CDC suggestions I don’t know what that is going to look like now. It was supposed to be staggered start times. It was supposed to be okay-ish. But what now?

Fully vaccinated people can go back to life as normal… not washing hands so much… no 6 feet of separation… no masks… but no one will ever have to prove that they have had even one vaccine let alone both of them. How many people will continue to get the vaccine if suddenly everything is back to normal anyway? There are an awful lot of people who have already said they won’t be getting the vaccine but are waiting for herd immunity. There are an awful lot of people who don’t wear masks correctly now and will suddenly not have to wear them at all.

I know that the best I can do is the best I can personally do for myself and my household… but… fear is kind of sobering… and I don’t get any more panic attack pills because Bear died 214 days ago so I don’t need them any more.

And sitting here… birds singing… woodpeckers finding their breakfast… sun coming slowly up… these are the things going through my mind. Not just now what… but… NOW What…

Breathe in
Breathe out
One day at a time
and buy a metric ass ton of hand sanitizer…

Love and Light
AprilJoy
5/18/2020

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Gallery

Divine Providence

Posted on June 14, 2020

This gallery contains 1 photos.

“Catholics call it Divine Providence. Some believe it, some don’t. I do” A friend of mine made that statement today when we were talking and it resonates with me. So many things in my life have put me in a … Continue reading →

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Corona Virus, Paranoia, and hand sanitizer

Posted on March 5, 2020 | Leave a comment

So…. The corona virus is a thing. And people, suddenly, have started taking notice of being careful (sometimes overly careful) of germs… of noticing the things that I have had to notice for years. And many of them are also over reacting.

And I’ve started to be even a little more cautious than I had been being anyway. I have been doing the use your knuckle or elbow on the elevator thing. I rarely if ever open doors with my hands. I sing happy birthday twice in my head when I wash my hands. And I use hand sanitizer. Not HOLY CRAP amounts, but there are times when I use it because it is prudent.

Yesterday, because I suddenly got overly scared, I sent Monkey Butt out to see if he could find hand sanitizer. There is none to be had in Strongsville. None. Not at Giant Eagle. None at Walmart or Target. None at Marcs or the dollar store. None.

It is the winter of not having to stock up on bread and milk and toilet paper (not a big snow yet this year), it is the winter of there being a huge rush on hand sanitizer.

But I went online (go figure, right?) and I found where you can do it yourself hand sanitizer. So, while he was out, I had him look for alcohol and aloe. I was anticipating aloe gel (the stuff you see/get in the summer in the sun screen isle… vitamin e and aloe gel). What he found, and brought home, was a gallon of aloe vera. Liquid aloe. 100% aloe in liquid form. Interesting. He also, finally, found alcohol (most places were out of that as well… ) and brought home $9 worth of stuff.

I have had tea tree oil.

I don’t have lavender essential oil… and that kind of makes me sad panda because it would make it even better… but I made do with what I have. And since it is all liquid, I put it in an alcohol spray bottle that I already had… mixed it up… shook it real well… and decided to give it a try…. it’s awesome.

I used 1 part 91% isopropyl alcohol, 2 parts liquid aloe, and 20 drops of tea tree oil (essential oil).

It smells pretty good

It is strong enough alcohol to kill whatever needs killing when soap and water are not around.

And it has an amazing side effect that commercial hand sanitizer doesn’t seem to have no matter what kind I get… it leaves my hands not dry but soft… like I just used lotion.

Now, I just need to find some bottles I can put it in in my purse and backpack to carry with me (the squirty bottle is too big) and I will be a very very happy panda.

Now that I figured out how to mix this up on my own, I can always have some made up and not have to worry so much about, necessarily, touching things. I will still worry… yay imunocompromised… but I will have a less harsh way of dealing with worrying after touching money or buttons or the table at any restaurant.

Love and Light
April Joy
3/5/2020

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Realizing how far you have come

Posted on July 13, 2018 | Leave a comment

I refuse to tell people that this is what to do… or this is what will work for everyone… because that is a bunch of hooey. Everyone knows that nothing works for everyone and what works for one person simply can not work for others.  It irritates me when other people do it.  I won’t.

That said… this is where I am this morning…

This morning I hit what my PCP suggests ought to be my goal weight. That means I’m about 15 pounds from my actual goal weight.  THAT means I, very soon, need to start going to the stupid Weight Watchers meetings so I can hit goal there and become lifetime.  I still resent the hell out of that little ploy, but it is what it is.  Yay Nestle…

In celebration I drank a cup of coffee with creamer as a morning treat.

Then I got ready for my run.

I started playing Pokemon Go as a way to see if I can do something distracting during my run.  Hatching eggs.  Unfortunately, the app calculates really badly… I can run 2.5 miles and not QUITE accumulate 1k distance in egg hatching.  But steps is steps and they eventually hatch.  I thought maybe that my fanny pack would count the distance better than my flip belt…  Turns out it didn’t… but… in the process… I had to put my fanny pack on.  This is the utility belt I had always used in races.  This is the utility belt I used before I started on my little weight loss adventure… and my little running adventure.  It fit.  The way the strap was… it fit… 6 months ago… it fit.

This morning when I put it on, this is what I found…. When I strapped around me and held the pack side… I could see my feet between my stomach and the bag.

OLYMPUS DIGITAL CAMERA

When I let go of it this is what happened!!!

OLYMPUS DIGITAL CAMERA

I have officially lost enough weight that my fanny pack needed to be VERY much tightened.  I was, suffice it to say, not only SHOCKED, but very pleasantly surprised.

Today, I adjusted my run/walk/run time so that I ran 30 seconds and walked 45 seconds… I did 2.37 miles this morning in just under 30 minutes.

It got me thinking…

When I first started running (2008… 2009… ish time frame) it was right before I was diagnosed with RA.  RIGHT before… I was doing pretty well… but I was no where near as quick or consistent as I am now.

My first several ‘runs’ I did in the middle of the darkness in the morning around our cul de sac.  I would leave our driveway, jog to the next driveway… make it to the end of the street… walk the rest of the way… and fall down into the yard.  I started adding a little distance.  I would go to the next driveway plus one sidewalk square.  Sometimes the next dandelion.  I worked my way using the First Day to 5K pod cast.

I eventually worked my way up to being able to finish about a mile and a half… run walk running… but I was doing it at about a 16 minute mile.

I finished my first half marathon two months after I was diagnosed with raging RA… 37 joints involved… inflammation everywhere…. My hips screamed the last mile.  I almost couldn’t make it into the house from the attached garage.

When I finished my first Disney half marathon 4 years later, I managed to stay ahead of the balloon ladies but not by much.  I half way trained.  My RA was kind of mostly controlled but I had just started on Orencia.  I was still on MTX.

I was determined to finish Disney…. and it was a personal best time for me.  It wasn’t a great time, but I finished it.

I was 218 pounds when we moved to Cleveland.

I refused to do the math on what that meant BMI wise.  I didn’t want to know.

That was 4 years ago.

February I started back walking very fast to train for Disney.

Then I read that for every 10 pounds weight loss you can shave off 20 seconds per minute off of your run time.  I was determined to get to a 14 minute mile so I could half way comfortably finish ahead of the balloon ladies and still get my picture taken coming out of Cinderella’s castle and maybe even with Goofy on the golf course.

So after my PCP told me that WW is the silver bullet and that I should only EVER eat 0 point foods, I got pissed and joined.  I was determined to make it work.

I needed to shave my time.

I needed to get healthier and stronger so I can help Bear as much as I can through everything that is to come. I need to be as strong as I can possibly be.  I need to be healthy enough to support him enough through everything.  It matters.

And here I am at 165 pounds… 15 pounds short of MY 150 pound goal…

The walmart leggings I started out running in stay MOSTLY up but slide down a few times during a 2 to 3 mile run.

People at work who haven’t seen me in a while have started to comment on how much weight I’ve lost.  I kind of look at that sort of in a hard way… I didn’t really think of how heavy I was.  I didn’t think about how I looked to other people.  I didn’t think… Now I think.

I’m down 4 pants sizes.  I’m running in between a medium and large pair of running leggings.

I don’t hurt as bad as I did before.  I don’t hurt as badly when I am nearly to infusion day.  My hands still ache some days and I still am stiff in the mornings but I feel less bad (does less badly equate to better?  I’m not sure).

And I’m starting to think of myself as a runner.

But it’s not all sunshine and roses in my own head.

Men have started to notice me… started to flirt with me.  There was a guy in Pittsburgh when Bear and I were waiting on the Gateway Clipper who bought pop corn and brought it over so I could help him feed the ducks.  It never dawned on me until Bear pointed it out later that he was flirting.  People rarely ever talk to me so flirting isn’t something that ever crosses my mind. My first thought was… I want very much to go back to being invisible and I should stop trying to lose weight.

But I like feeling better.  I like thinking that I might not need to be on some of the “you’re too heavy” drugs that I’ve been on for years.  High BP meds… cholesterol drugs…

So… yeah… it’s been very much a thinking kind of day… a day of how far I’ve come over the years.

Running isn’t for everyone with RA.  Knee damage, ankle damage, feet and toes… it seriously curtails what you can do with working out… but moving is a good thing and I’m convinced that weight watchers (much as I STILL hate trying to find the logic in stuff) and running have made an incredible difference and I know that I really really don’t want to go back to having a BMI of 36.  Goal for me is now a normal BMI… and making sure I’m around to help when Bear needs my help.

And… of course… doing races…

August … Rock n Roll Hall Of Fame 10k

October…. Towpath 10k
Pumpkin run in Akron

November… Made In America in Massillon Ohio half marathon

February…. Disney!!!

 

Love and Light

April

7/13/2018

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Posted in Disney Princess, Half Marathon, Health, running, Weight, weight loss, Weight Watchers

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Side Effects of Losing Weight

Posted on May 12, 2018 | 1 comment

I guess I could be imagining things… but maybe not…

I’ve lost 22 pounds.  I’m noticing that what I want to eat (what I can stand to eat) has changed significantly, after even just 22 pounds.  I’ve also learned when I can stand to eat some of my weekly points without freaking out or worrying about what the doctor will say if I’m not where she is happy with by June (and I won’t be and she will be irritated).

This was my week for drugs (okay okay… two weeks ago was my week for drugs, but after doing all the math, I pushed it out to where I could get my infusions at roughly the right time through February hitting all my races without being in huge pain) and I was very grateful for my infusion this week.

When I was walking back to my car after my infusion, this week, I got kind of light headed (and I know it wasn’t from being hungry… I ate a cookie at the infusion center).  By the time I got home, I was starting to feel less achy in my ankles.  My hands were still stiff and hurty but it felt like the meds were working a little faster.

If this is actually a side effect of weight loss, I can totally handle this.

I have had to go shopping for pants.  I’ve dropped one size so far and it was to the point where wearing a belt to keep up my pants was uncomfortable because the belt guides were the only thing that was actually being held up.  The baggy gaps in the pants was very uncomfortable.  So I went to the second hand store (I’m not going to buy new pants that I will not be able to use in a month or two) and got the next size down.

I’ve even started wearing shorts again… and running tank tops (and just as I started wearing shorts, the weather got too chilly again to wear them).  I realized that wearing really baggy stuff wasn’t hiding anything anyway…

…

And here I am, sitting… looking out over the green leaves that came out of nowhere over the last week.  Listening to the morning birds (yet with the heat on because it is freezing…) and watching the daddy nuthatch bringing food to the mommy nuthatch as she is in the bird house either hatching eggs or caring for her babies…

One week from today is my 8k.  This will be the first race that I’ve done since the Presque Isle half marathon.  One week from right now I will be in Cleveland in my corral waiting for the race to start.  I know that, in running, I’m running away from the thoughts that chase through my head all the time… I know that this race is going to be hard in a lot of ways…. it’s going to be incredibly emotional… I hope I can do this.  I hope I can hold it together.  I hope that I can finish my challenge.

And before I lose it this morning…
Love and Light
April
5/12/18

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Posted in Cleveland Half Marathon, Fitness, Half Marathon, Health, weight loss

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On CBD and Achey Days

Posted on July 22, 2017 | Leave a comment

Cannabidiol (CBD) has been studied as a way to help with pain and inflammation of RA.  I know that it helps in other things as well, like my mom’s fibro and sometimes when she has chest discomfort from a cold.  I won’t pretend that I had my doubts about how much it could help the RA pain.  I’m nothing if not a cautious convert.

I also have to admit that it takes a lot to make me think twice about using Tiger Balm when I start to get achey.

But… When I won one of Vicki’s contests at Rainbow Sky, the prize I opted for was XXX special BooBoo Salve from Vicki’s Rainbow Sky Trading Company.  Rainbow Sky has some of the most interesting things.  I’ve been a long time fan of her BooBoo oil and salve.  It helps my headaches.  It helps when I have scrapes, bug bites and poison ivy.  She is a close family friend and when I won (one of the winners) one of her contests, she offered to make me up some special booboo salve.  She mixed some CBD oil in with the other oils.  It smells a lot like the regular booboo oil, which is a mixture of 43 (44 with my current mixture) essential oils in an all natural base.  It works really well in its “regular” formulation but the addition of the CBD really gives it some amazing kick.  On days when my back aches, days when my wrist of my fingers scream, it helps.

Only down side to BooBoo oil/salve is that it has a scent.  I like the scent, but since Bear has been having symptoms (and now diagnosis of) IPF, it triggers (so does my Tiger Balm) a spate of coughing.  It’s not so bad when I’m in a different part of the house or not in the same place as he is, but if I’m in the car with him, or in the same room with him, it triggers him pretty badly.  I know that a lot of people have a problem with heavy scents, even if they aren’t “chemical” based (and hey, it’s not like H2O isn’t a chemical or anything… so… yeah).  I’m becoming more and more aware of that sensitivity as time goes on… I try to be gentle with my fellow humans, as much as I can.

There have been times when I have really wanted to put on something to take the edge off.  Booboo oil… or salve… Tiger Balm… SOMETHING… but… I don’t want to cause more pain than I have to.  I have been where I know I would trigger him if I had used anything scented and I have gone without until I could be somewhere where it would dissipate before I was back near him.  The scent isn’t that strong, and honestly I like it as much as I like the Tiger Balm smell, but easing his breathing is paramount in my mind.

About the same time as Vicki was making me my special concoction, I got a sidebar from someone at Outch and they pointed out that Outch Ointment is a CBD and Chinese herb infused topical. And that CBD is widely reported to improve the quality of life of those suffering from RA (as well as many other conditions).  It provides a safe, natural alternative to other methods used for chronic pain relief.

I was chagrined to admit that I had never really researched CBD.  I had never never tried it.  I knew it helped (not really topically,  but orally) with Epilepsy and with chronic pain.  I have professed to be as holistic as I can be and yet I never tried this?

I looked up Outch.  It was started by Brian Bowen, “a traditional Chinese medicine herbalist and nationally certified acupuncturist” from Colorado.  I read their “about us” pages and really liked what I read on The Philosophy page.  He kind of reminds me of a doctor version of Vicki.

 So, I let the representative from Outch send me a free sample of Outch.  I got a tube of the roll-on (adds camphor and menthol to the ointment version) and a pocket sized jar of the ointment.  The Outch ointment combines the ease of pain with the added benefit of having absolutely no scent.  I’m not sure how that works or how they managed it, but I can use the ointment in the car or sitting beside bear in the living room without triggering a coughing spell.

Today, I ordered a 1.7 oz jar of the ointment from Outch so I can routinely refill the little jar that came in the mail as the sample and I can just toss it in my bag and use it whenever I am around people.  I will be saving up a bit of extra money over the next month or so to send to Vicki to make me up another batch of her BooBoo salve with the CBD in it, too.  I’ll be saving for a bottle of the roll-on Outch, too because I really like the cool tingle on my back when I rub it into the muscle spasms.

I hadn’t done the research.

I had never tried CBD.

I am a convert.

Am I 100% convinced that it will cure RA?  No, I’m not convinced.  Am I certain that it helps when I ache?  Yes.  Even on the steamy, too warm, too humid days we have been having in up-state Ohio recently. EVEN when I’ve been typing too much or crocheting too much or pushing too hard mowing the grass… it helps take the pain away without resorting to pills.

Haven’t tried CBD?  I highly recommend a trial.  You can get straight CBD from Vicki to try or one of the mixes that these to places have.  What can it hurt?  You might be out a couple cups of coffee from either shop, but if it helps, it’s well worth it.

 

Love and Light
April

7/22/17

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Posted in back issues, Health, rheumatoid arthritis

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Pre-existing Conditions

Posted on May 7, 2017 | 2 comments

069

No, mom, the picture isn’t from now, it’s from a couple years ago… just making a statement.

Okay… let me start out by saying I’m trying really hard not to over react. I’m trying hard to think that, even in politics, there has to be some logic involved, some degree of common sense.  I’m trying to believe that a country that has progressed so far in the past dozen or so years can’t possibly slide backwards so far so fast.  I try.  I really try. I want to believe that my daughter (who has kidney stones and epilepsy) won’t be cast adrift.  I want to believe that my son with sjogrens will likewise not be put on his own iceberg.

That said… trying hard doesn’t keep me from being terrified.  I’m terrified.

I read pre-existing conditions.

I read caps on coverage.

I read the rhetoric and the realities.

If there is a million dollar cap on lifetime benefits… and I ONLY get my orencia infusions… those magic biologic treatments that keep me functional… at 10,000 billed to my insurance a month… that leaves me with just over 8 years.  8 years of being able to be a functioning tax paying contributing to society citizen.

There has to be an irony in the fact that 8 years will take me to the maximum possible term that Trump could see.

And I am one of the “lucky” ones.

I hear the people in the infusion center talk about what EACH of their treatment actually “costs” if it isn’t covered.    Fifty thousand dollars a week for one treatment.   They get to live almost 6 months (because their treatments are keeping them ALIVE not just keeping the hot glass shard feeling out of their fingers or their fingers pointing in the same directions, or their knees from being the size of volleyballs).

I’m trying to not be reactionary

Acne is a pre-existing condition

Acne

People who had cancer 15 years ago and are not clean and clear… they have a pre-existing condition.

And don’t even get me thinking about how much the fact that a woman is born with the wrong anatomy to matter.  <<it’s been a LONG exhausting week and I might just tell you>>

 

I don’t want to be reactionary… but…

States could apply for waivers that would allow insurance companies in their states to do three things: 1. Charge older people more than five times what they charge young people for the same policy; 2. Eliminate required coverage, called essential health benefits, including maternity care, mental health and prescription drugs, that were required under the Affordable Care Act; and 3. Charge more for or deny coverage to people who have pre-existing health conditions, such as cancer, diabetes or arthritis.

The waivers could also impact people with employer-based insurance, because insurers could offer policies that have annual and lifetime benefit limits, which are banned under the Affordable Care Act, and some companies may choose those policies for their workers to lower premiums.

Let’s face it… I’m really scared.

I’ve written my senators.

I’ve considered stopping my infusions because they will cost more than I make

I’ve considered moving to somewhere that will allow me to afford to exist.

Yeah… not being terrified and not being reactionary isn’t really working for me so much right now.

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Struggling to find the words

Posted on January 10, 2016

I’ve started so freaking many posts over the last couple weeks.  More than once I just couldn’t find the time to finish.  More often, I couldn’t find the words.  I can’t put two coherent thoughts together most days right now. … Continue reading →

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Reality Bites

Posted on September 24, 2014 | 1 comment

So…

For the most part, I work really hard at being little miss mary sunshine.  Sometimes it takes more work than others.  Sometimes it is pretty much cake.  This early morning I’m sitting in the chilly (62 in the house) morning house… the only sounds this morning are the dog chewing her dry food and burping and the not so rhythmic click of my fingers on the keys of my keyboard.

I’ve been having stomach pains.  The symptoms have seemed to be (to the Dr too) generally related to a gallbladder problem.  Dr poked and prodded and sent me for an ultrasound.  It took a week to get the pre-approval from the insurance (want to be sure the chick without any “women’s” plumbing after that total hysterectomy isn’t just trying to see the baby) and the test was done yesterday.

The lady that did the ultrasound hit some spots that felt like very deep bruises and there were a couple times that I would dearly have loved to hit her.  But I didn’t. She sent me on my way telling me that the Dr would have the results by the afternoon.  And they did.

PA called me with someone’s interpretation of the results.  I also got the test results that were on My Chart (I really like that feature of Cleveland Clinic) and read through their interpretation.  The PA assured me that my Gallbladder is not inflamed, infected and that I don’t have gallstones.  I should keep taking the industrial strength Zantac, stay on a low fat diet (cause there’s nothing wrong so it is a given that I should stay on a bland diet) and follow up with my regular PCP in… oh… about 5 weeks now.

Funny… when I read the results of the test, it showed some accumulation of gallbladder sludge and what seems to be hepatic liver changes.  Technically… it showed “increased hepatic echogenicity”… which seems to be (thank you reliable medical websites) frequently connected to high alcohol consumption (which… I don’t even get a glass of wine at the fancy dinners that work throws when we are on the road, even for the toast… I toast with ‘Coke-a-regular’ or ‘Coke-a-normal’ depending on the country so it isn’t that) or… (insert Daht-daht-da-dahhhhhhhhh) use of methotrexate.

So, I sent of a message to my rheumy to have her look and take everything into account and now I’m waiting to hear from her.

I don’t wait well.

Last night I had an ever so small panic attack.  I took a long hot bath to try to convince myself that it’s all okay… and now I wait.

I’m not sure how to feel… but scared seems to be winning out this morning.

There has to be some kind of irony in the fact that I went because of the pain… and they found the sludge that is probably causing the pain… and I’m looking at maybe now catching MTX side effects reasonably early before there is too much damage… and what there is is likely reversible (no scarring yet).

And… the adventure continues…

 

Updated: September 24, 2014
Author: Figment of Fitness
Keep your dreams alive

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