Category Archives: rheumatoid arthritis

Walk a Month in My Shoes

Posted on June 17, 2021 | 1 comment
May be an image of tree and nature

Fair Warning…. I’m getting too old and tired to have much of a filter. Consider yourself warned.

Tuesday was amazing. I want on a sunrise walk…. saw a rainbow… had a peaceful much needed morning…. ended the day with a tattoo.

May be an image of one or more people, tattoo and tree

Tuesday was a good day. Between Saturday’s Crone’s Circle and Tuesday, I realize that I am really glad I’m not made out of Ticky Tacky (PLEASE, listen to malvina reynolds – little boxes…. then listen to it again… and again…. really listen… youtube repeater is magic).

Then there was Wednesday.

Low and Behold I’m still not good enough for my neighborhood (I’m SERIOUSLY considering not putting up a single freaking Haloween decoration.. no trick or treat…. no Christmas decorations…. I’m good enough when it suits them but not when it doesn’t….. ). The city inspector came around (I’ve been reported again…. I put away the crap that they didn’t like and they are still not happy. F#$K them! I have to take the time and spoons I really don’t have to make someone who doesn’t have the cahonies to actually come talk to me…. to face me…. to freaking ask if there is anything they can do to help. Once upon a time neighbors didn’t just get a stick up their ass and hide behind the city.

I want with all of my heart to have whoever it is to have to actually live my world for JUST ONE MONTH. I want them to have to consider, when they open their eyes, exactly how they feel…. Can I tie my shoes this morning or is it a crocks kind of day? Can I hold a regular coffee cup or do I need a plastic one so if I drop it with my not working so good fingers it won’t break? Will I need to take industrial strength Napproxen so I can sit at my computer and do my job today? Do I need my cane to get to the bathroom because my knee is way way bitchy or my hip isn’t working right? Can I put a t-shirt on or is my shoulder hurting enough that I need a button down so I don’t have to raise my arms over my head?

Is my child currently in the hospital and I need to be BOTHERED to pencil in a visit so they know I still care? TWICE in the last month….. but F#$K that…. make your ticky tacky house look good enough so I don’t have to deal with anything.

Four dogs with Kennel Cough. That doesn’t worry me a bit.

Am I dealing with PTSD and stress and does the PTSD and stress make the RA scream worse? Am I having a tremendously horrible time dealing with Bear being gone and now my child moved out so where there were four a year ago now there are two?

F#$K that…. TICKY TACKY TICKY TACKY

Is it getting near infusion time? Can do at this point do little more than function and fall into bed exhausted? SUCKS TO BE YOU…. TICKY TACKY!!!!!

Is the silence and the loneliness nearly incapacitating some day? oh well.

Other people can have shelves on their porch (you know to keep it semi organized). Not me.

Can’t have my swing now that I could have when the other inspector came around. Oopsy

Can have my hammock but it can’t have a blanket in it. WTF is that about?

Can’t have a couple boxes of books for the Little Free Library on my porch.

Can have furniture on the porch but not dog toys (What is it with my little bin that is 18 inches high and hidden behind the bushes that holds the pug toys that offends the neighbors?).

After putting in 10 12 14 hours at work…. I don’t HAVE the spoons to do much of anything some days. Tough shit.

My window of good days is kind of limited. It surrounds my infusions and how well I can keep the stress down. Yeah this is SO helping.

I don’t know what I’m allowed to have on my porch. I don’t know why it is anybody’s business if I have a shelf. How do their nosy asses know I have a shelf? WHY do they care if I have a shelf?

Lowes last night (add insult to injury) I got berated for wearing a mask…. don’t I know the mandate is over? Stupid bitch sheeple don’t know how to exercise your rights. I guess I only have the right to not wear one… not the right TO wear one… people lived with the government bullying them into wearing masks that didn’t do ANYTHING to stop anything so why not bully people like me for exercising MY choice. Doesn’t matter that my doctor said that the BEST I can hope for is 65% effectiveness if I’m lucky because of RA even though I’m fully vaccinated but I pay 10K a month for the meds to be able to function that limit the efficacy…. nope I’m a stupid bitch sheeple…

I keep thinking…. the energy a person puts out into the world (positive or negative) will be returned to that person three times. What did I do wrong? WHAT DID I DO WRONG????

I would not wish this on anyone for a long period of time… but I really wish whoever got a stick up their ass with my house would have to live my life for ONE month… infusion to infusion… and deal with all of this shit so they would know. ALONE….. have a live human to talk to for about one hour…. maybe two hours… a day. Have to shovel through all of the shit that got put off for the year that they were dealing with Covid and Hospice and Grief and stress and PTSD. Then they can go back to their ticky tacky lives and leave me the hell alone.

Below are the lyrics to Little Boxes and here is a link to a really neat article on the song.

https://news.berkeley.edu/2020/08/28/berkeley-talks-music-podcast-malvina-reynolds/

Lyrics to Little Boxes

[Verse 1]
Little boxes on the hillside
Little boxes made of ticky-tacky
Little boxes on the hillside
Little boxes all the same
There’s a pink one and a green one
And a blue one and a yellow one
And they’re all made out of ticky-tacky
And they all look just the same

[Verse 2]
And the people in the houses
All went to the university
Where they were put in boxes
And they came out all the same
And there’s doctors and lawyers
And business executives
And they’re all made out of ticky-tacky
And they all look just the same

[Verse 3]
And they all play on the golf course
And drink their martinis dry
And they all have pretty children
And the children go to school
And the children go to summer camp
And then to the university
Where they are put in boxes
And they come out all the same

[Verse 4]
And the boys go into business
And marry and raise a family
In boxes made of ticky-tacky
And they all look just the same
There’s a pink one and a green one
And a blue one and a yellow one
And they’re all made out of ticky-tacky
And they all look just the same

Sorry for the rant but… all I can manage this morning is to cry and I don’t know how to cope right now… and the meds that would help not cry all day would mean I can’t do my job and I can’t do what I have to to keep from going to court over the shelves on my porch.

Love and Light
AprilJoy

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Posted in Music, rant, rheumatoid arthritis

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Choosing Joy… 99 Walks… Joyful Wanderer… July 4th edition

Posted on July 4, 2020 | 2 comments

It’s the 4th of July 2020. I am so over politics. I am so over Covid 19 and its evolving cousins. I’m over the Murder Hornets and the Meth Gators and being scared all the time.

January is the traditional time of “reset”. And in January I decided that my word for 2020 was going to be JOY. And then February happened… then March happened… then April and May and June. I have been fighting so hard to just maintain any vague semblance of sanity and not falling into a pit of depression.

Don’t get me wrong. I’m on year three of my anti-depressants. And there are days when I really want to message my Dr to see if we can’t adjust the dose. It’s not like I have much to be depressed about. Bear on hospice, knowing that the flu probably put him there. Races being cancelled. Fairs and Disney. Movies at the theater being a thing of the past. The world as we know it changing to one where hate and derisiveness are rampant. Realizing just how polarized things really can get. It’s made this Mary Sunshine pretty much a Debbie Downer for a lot of days.

Then I found 99 Walks.

I’m not even sure how I found it on Facebook, to be perfectly honest. It might have been an ad on my feed. I don’t know. I know whatever it was, I saw the shiny thin bracelet that is your reward for making your walking goal every month and I was hooked on the bling. Ask anyone… I have a crap ton of medals hanging in the window of my office at home. Bling is an awesome motivator. And I needed some heavy duty motivation. Three good things every day for months on end wasn’t doing it. Something had to.

So I went and investigated. There is an app for that (go figure). There is a book. There is a central Facebook group. There are spawned off other Facebook groups. Everyone is so incredibly supportive and friendly. It is my respite from the world. It’s not a magic bullet. I still find myself in a pit with nothing to look at but mud walls and worms kind of frequently. But it is helping.

This month the theme is Joyful Wanderer (did I say that yesterday?). I’m taking this month very much to heart. I’m very mindfully walking. I’m stepping up my game. I’m very determined to get my Joyful Wanderer bracelet.

I’m struggling to get back to Choose Joy.

I’m manufacturing ways to try to trick my brain back into some semblance of who I am because I really really miss being me.

Does that make any sense?

So tonight I’m sitting here waiting on French Fries to be finished cooking, nursing a shoulder that has been flairing for about four days now (it usually doesn’t last this long and I’m really not enjoying it). I’m putting my left hand where I need it to be with my right hand so I don’t move the muscles so much in my left shoulder. I’ve been putting Boo Boo Salve on it pretty regularly (it’s awesome stuff… all natural… a friend of my mom’s makes it… https://www.rainbowskytrading.com/) and adding in the Napproxen at night.

Today we went to the zoo again. It’s coming up close to the Asian Lantern Festival and we wanted to see them in the daylight. That, and the Dinosaur experience is open so… yeah.

It was particularly scary to be out and about today. The state isn’t as bad as Florida or Arizona or California right now… but we are double what we were a month ago and it isn’t looking better any time soon. Our county is the second highest number of Covid cases in the state. The mayor of Cleveland made an executive order that everyone has to wear a mask when they are in a public place.

It was good to see, though, that people were actually wearing masks this week at the zoo.

I worked hard today at mindfully spending time with Bear and Squirrel. It was, altogether, a good day. Pictures to treasure. Memories made.

Should we have gone given everything? Probably not. But we were as careful as we could be. Handsitizer. Clorox wipes. Masks and 6 feet apart (even when it pissed people off that I deliberately would not push Bear’s wheelchair past them when it was too close. Bear says he will die sooner if he can never leave the house. I can’t take everything away.

Starting now I will be starting to use curbside pick up.

Am I scared?

Hell yes

But I can do this. I can’t say this is any kind of new normal… but it my current reality and I have to find myself again.

Today was one walk of 2.6 miles pushing the wheelchair and one walk of 1.2 miles. both were mindful and peaceful.

Love and Light

AprilJoy

7/4/2020

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Posted in Covid 19, flair, grateful, hope, joy, rheumatoid arthritis

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Feeling Expendable and Vulnerable

Posted on April 16, 2020 | 1 comment

So… It’s been quite a week…. Someways are okay… some ways are really good… and some are really really scary.

Bear has been walking about 20 min to 30 min every couple days on the treadmill. He uses his E tanks for that. We had 3 empties and 4 full and it was time to order more. It was even MORE time to order more because we were under a high wind warning. If we lost power we would need to be able to rely on tanks. Lincare isn’t delivering any more (pandemic). If you need O2 supplies, load your tanks into a car and haul your oxygen dependent (wait wait wait… oxygen dependent… doesn’t that imply you are one of the AT RISK people???…. piss off skippy) butt to their office (about a 30 mile round trip) and bring your tanks in to be replaced. They will not leave them on the porch (where they have ALWAYS left them… the only time they have EVER had human contact at our house was when they put in the machines).

So let me get this straight… if I weren’t reasonably fit, or if we didn’t have kids living with us… say I was bed bound or wheelchair bound or didn’t drive or whatever… my oxygen dependent person would have to do this on their own in an UBER or Lyft???? Seriously? I get social distancing (BELIEVE me I get it) and I get being very cautious. But if you are in the business of delivering that which keeps people alive, you are in the business of delivering that which keeps people alive regardless of whatever. There are ways around this situation. Me leaving bottles on the porch and them leaving the new ones next to them and no one having to be anywhere near each other is one freaking way. They keep billing me for the empties though… hell yeah.

People don’t matter.

Bear and his Dr decided it was time to start hospice. Palliative care might have sufficed but, with the pandemic still rampant (despite the glowing optimism of our… uh… “leadershit”), they aren’t scheduling palliative care people. So you either struggle not to drown or you find alternatives. The alternative was for hospice to start coming. So we are now on hospice and that thought is just scary. But the hospice people treat you with respect and dignity and are helpful. They got us off Lincare and onto their O2 supplier and told us what we need to do in case of power outages and in case of whatever whatever whatever.

I felt like people matter to them at least as much as the money.

Then last night on the news they reported about the Cleveland Ambulance company…

Apparently the rules have changed for them. If you have a heart attack and need to be revived and are either Covid positive or are even suspected of possibly being Covid positive (who makes that judgment call? and… what if it is someone who is in any way prejudiced) they are supposed to try to revive you on the spot but if (after 20 min of effort) they can’t, they are supposed to leave you there. No loading you into the ambulance. No taking you to the hospital. After 20 min leave you there. Just leave you there. If you are SUSPECTED of Covid. Most heart attack victims are the people who are going to be most susceptible to the virus any way.

People don’t matter. Money matters.

And then, last night, something wonderful happened. I was drug aside by Monkey butt to talk about summer. The Young Lad won’t be back north until end of June or early July… but when he gets home, the boys want to do an hand fastening ceremony in the back yard. They would go the whole legal beagle way of wedding if it wouldn’t mean The Young Lad would have to almost triple what he is paying for college and he is so nearly done anyway but they want to do something lasting and binding so Bear can be there to see it. It made me cry. It didn’t make bear cry. It made him smile really big. I’m looking forward to all of this. It is going to mean the world to everyone because bear will get to be there to see the boys married even if it is without a license.

Maybe there are some small shimmering lights left in the world.

I’ve started to feel like there is so little I have any control over at all. Nearly nothing in fact. But then something happens that fills me with hope and I think maybe it will be okay.

I may never be quite the Mary Sunshine I was. I may have become a wee bit harder because I see that there is little redeeming goodness in a lot of people. But there is in some.

I’ve spent a LOT of time neck deep in hot water on the floor of the walk in tub crying this week. I will spend a lot more time there crying going forward. Stress is making my hands hurt an awful lot… It’s going to be an incredibly hard next few months… but… I’m starting to think maybe I can hold it all together.

Love and Light
AprilJoy
4/16/2020

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Posted in hospice, rheumatoid arthritis

Just Like It Was Before…

Posted on April 9, 2020 | Leave a comment

People are talking about when life can get back to the way it was before. The way it was before Covid-19. The way it was before everyone became aware of all of the things they touch and all of the ways you can spread diseases… any diseases… not just the pandemic one.

Funny… I thought I was super duper careful about what I touched and how I thought about things before. I mean, I’ve had active RA (been classified moderate to severe for what… 12 years?). I have been washing my hands and singing happy birthday twice. I’ve been washing tables off at restaurants. I’ve been “careful”… but I’ve never really, I guess, been CAREFUL.

People talk about how it’s just like the flu. People talk about how mild their symptoms were, they barely knew they had it.

People talk a good game about social distancing… and meet every evening in the driveway within arms length of each other to discuss the day. No gloves, no masks.

The mail man walks up to you to hand you your delivery box… no gloves… no mask… hands it to you… and you have an internal panic attack because… because you were just walking around the house to go inside and you didn’t have your gloves on and you didn’t have your mask on and he just hands it to you. It was in his truck with lord knows what other stuff. He has touched mailboxes and mail and (apparently) other people… and here you are walking around your own yard and should you wear your mask and gloves not out in public but in the semi-privacy of your yard?

Back to normal?

I don’t know if I will ever get back to “normal” if what before was was normal. Covid can live on surfaces 72ish hours (or 14 days depending on whether you are a cruise ship or not…) but the flu can live on surfaces (yeah yeah… depending on surface, humidity, temperature and the phase of the moon and what color underwear you’re wearing blah blah blah) for 48 hours. Two days. Who touched that door handle two days ago? Who pushed that elevator button in the last 2 hours let alone the last 2 days?

Am I a germaphobe? No. I will eat tomatoes off my vines without washing them. I will snuggle my dogs knowing full well they have been rolling in the mud. I will talk to people (eventually… when all of this is over) without the use of technology between us. My house will never be pristine (I have four dogs… I’ll just be glad if I can keep the dust down to a small “Pigpen” cloud most days).

But I will be way more aware of things.

I will probably bag my groceries less by just tossing anything in the bags… I will bag cardboard together, cans together, perishables together. I will leave the cans in my trunk (unless I NEED them sooner) for a few days.

But more…

Normal looked very different in more ways than just that. Normal was running and going and doing and not time for this and no time for that. I love having time. I love being able to do things as a family that we just didn’t find possible before.

Movie night. Game night. Putting jigsaw puzzles together, together. Sitting on foldy chairs in the front yard and talking.

It will be nice to be able to get in the car and drive to the lake. It will be amazing to get in the car and drive to mom’s for a few hours. It will be a hugely special treat to go to the store and walk around and browse rather than just get in and get out (or more… order everything delivered).

Will I ever go to Disney again? My plans are still to run the Goofy in honor of my Goofy. Looking at it now, that may not be before there is a Covid shot I can get about the same time I get my flu shot. Will I look at running in races differently (10000 of your closest friends herded into corrals)… oh yeah. Will I do it? Hell yeah.

I will continue making my own hand sanitizer because I just like mine better than the commercial gel kind. Will I carry some in my car, my purse, my pocket, my backpack, my desk… yeah. And I will use it way more religiously than I ever have before. And I will carry gloves and a mask and my buffs (which I do anyway because well… buff)… yeah, and I will use them.

Life has changed here. Covid-19 situation in the world has changed me in a lot of ways. Some good… some not so much. Monkey butt said, last night, that he thinks some of what I’m doing right now will stick forever… making four thieves vinegar… making citrus cleaner… making citrus enzyme cleaner… coming closer to zero waste. He’s probably right. And I’m enjoying getting back to growing my own herbs and starting my own plants.

Life has changed.

It will be good to get back to not being terrified of the outside world. It will be good to not think judgemental thoughts over what other people do in any situation.

I will take way less for granted.

And I really really hope that life doesn’t actually get back to what normal used to be.

Will it ever get back to “normal” if normal was what it was before? Probably not. At least not for me. There will be a whole new normal. I’m not sure when that normal will be… but there will be a whole new one. And it’s okay.

Love and Light
AprilJoy
4/9/2020

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Posted in Covid 19, Family, fear, flu, rheumatoid arthritis

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On NOT being able to see the doctor…

Posted on July 29, 2019 | 1 comment

So… Wednesday is infusion day again. I’m SO looking forward to being on the receiving end again. I can always tell when I’m getting close. My hands ache… my feet ache… I’m physically exhausted. There are months when right before infusion it is all I can do to stay awake at work. And if we happen to have to drive on the less than stellar roads… there are times I toy with how much it would add time to the drive if I opted to get out and walk. Bear thinks I’m finding fault with his driving. I’m not. I know that it is my body being all pissed at me.

Some people figure that, since I’m down 50 pounds, I shouldn’t feel as shitty when it is infusion time.

Wrong

I don’t hurt as bad when I do races (depending on where it is in my infusion ‘that time of the month’… ironic that I look forward to that time of the month since I had my hysterectomy… when I race). My hips don’t scream. My knees either. I’ve actually been toying with trying to run in my hobbit feet again since I am less heavy. But when the Orencia is wearing off… I still feel it.

And, yes, I know I’m way more crabby… bitchy… short tempered… when I’m nearing infusion day. I’m way less apt to shrug off the BS. I have gotten better about not saying what’s running through my brain… but it is way way more apt to be running through my brain now.

But what has really started to get to me… Cleveland Clinic has decided that I no longer ‘have to’ (read get to) see my doctor’s physician’s assistant every time I have an infusion.

Before, I HAD to see her or I couldn’t get my infusion. Sometimes that was a bit problematic (particularly because they are ALWAYS short staffed and they don’t usually have coverage for vacations) when my 4 weeks ended up landing on when someone was out of the office. I should be relieved that I don’t have to work around her schedule. But… now I can only see the PA once a quarter and my actual doctor once a year.

I am thinking there might be some interesting middle ground here. I mean… on one hand I don’t have to worry about my appointments coinciding with vacations. But I do have to worry about the fact that now they have scheduled my PA and my Dr to be at three other locations that they didn’t used to cover. That means that if I happen to actually need to see someone, my best shot is likely to be holding my fingers up to my phone camera so someone in a web-ex can say…hm… yep… you have fingers.

The “second best hospital in the country” has a funny way of showing that patients matter a tenth as much as $$$$$$$$$$$$$$$$$$.

Yeah… I realize that I’m bitchy. See above… my hands hurt enough today that they are making my stomach feel crappy.

Sigh

Love and Light
April
July 29, 2019

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Posted in rheumatoid arthritis

My Adventures with RA Meds… RDBlog Week… Day 1…

Posted on September 22, 2018 | 2 comments

You may, or may not, know my story.  If you don’t, you can find details here.  The back story is kind of interesting, especially if you want to know where my head was in 2011.  Reading back over it, I realized that I have spent 9 long years knowing I have RA.  I’ve come a LONG way (physically, location wise, mentally) in those 9 years.

During those years, I’ve head good experiences and horrible experiences with my RA meds.  I guess maybe it is a good thing, now, to reflect and consider that adventure…

When I was diagnosed, I was IMMEDIATELY put on prednisone to try to get the inflammation down in my joints.  I was also started on Methotrexate (MTX).  From the get go, MTX made me nauseous… as I went from 2 to 4 to 6 to 10 pills it made me more and more nauseous.  I would take my pills on Friday night as I was already laying in bed because as SOON as I swallowed them I felt dizzy, light headed and like I was going to throw up.  It was not pleasant, but it worked.  I honestly thought that was going to be my forever.

But I talked to my doctor (I miss Dr Booth a lot) and we decided to start on injections to see if that helped any of my side effects.  MTX, with injections, still made me kind of dizzy for a couple hours, but it was way better for me than the pills.   I could get an injections and still go live my life and (at least for several years) it was effective.

Sometimes I had trouble getting MTX (like when there was a shortage for a couple months) and sometimes pharmacies would give me grief (no, they don’t MAKE your MTX with preservative like you can get any LITERALLY any other pharmacy on the planet… you need to make your doctor write your prescriptions in the RIGHT way so we can take ALL all all all all of your money) but for the most part, my adventures on injections was pretty simple.

It wasn’t the be all and end all medicine for me, though.  It did about half the job and Dr Booth could still see/feel the inflammation in my joints.

So I started on Enbrel.   Stomach injections… pricey…. but for about a year IT worked the other half the way to being nearly (if not quite) “in remission”.  It was close enough that I could function nearly normally.

Then I had surgery.

AAAANNNDDD Enbrel decided it was done working for me.

Quick switch to Humera… which worked pretty well for me for about 18 months…. until I had surgery… annnndddd… that gave up the ghost as well.

The doctor said that the stopping working was probably only coincidental to the timing of my surgeries.  That sometimes they just only work for a certain amount of time and then stop working.  Yay…. She also told me that there are a lot of people who have the same story I did of working a while then stopping working because their RA doesn’t respond long term to those medications but that (in their INFINITE wisdom) the insurance companies will only allow the Dr to follow on rabbit trail to controlling the progression of the disease.  The cynic in me honestly believes that the drug manufacturers have enough pull on the whole freaking society that the reason you HAVE to take A then B then C is because they all want a share of the money.  And… when you’re talking anywhere from $2000 to $10000 a month it’s kind of a nice pie to be able to share in.

Then I started Orencia infusions.  Those have stuck the longest.  So far we are at about 6 years and counting.  They still are doing their half for me.  It means getting tied up in the infusion center for a couple hours a month, but that is kind of a small price to pay.

Also, MTX quit working so well for me and I started (two years ago now) on Arava.  I like Arava way better than MTX.  Even with the injections I still had some side effects… hair loss… dizzy for a couple hours… and I had to always travel with injection materials.  Arava is a one pill a day thing and I’ve had no side effects with it.  It is taking care of the other half of the situation for me.

So far, I’ve had no issues with getting my Arava and I’ve been approved to keep taking orencia until 2020… add in losing weight, exercise, and eating better and right now, I’m doing pretty good.  Knock on wood… I hope that continues for a long long time.

 

Love and Light
April
9/24/2018

 

 

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Posted in autoimmune disorders, medication, medicine, RDBlog Week, rheumatoid arthritis

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But I Caaaaaaaan’t

Posted on June 2, 2018 | 1 comment

I’ve been haunting a lot of websites lately trying to figure out 1. just how weird I am and 2. how to get to be a better me. I guess maybe that makes me even weirder but hey.

I’ve been reading a lot about can’t.

And I’ve been getting irritated.

“Everybody is a genius. But if you judge a fish by its ability to climb a tree, it will live its whole life believing that it is stupid.”  ~Albert Einstein

Girls can’t

Boys can’t

fat people can’t

skinny people can’t

people with RA can’t

people over can’t

I heard a lot when I was growing up all of the things that I was told I can’t.  I worked really hard to prove out that some of those were wrong.  Some stick in the back of my head and I fight the words EVERY SINGLE DAY.

There are a lot of things I know I can’t do.  I can’t “win” a half marathon (marathon) but that is because I never loved running when I was in a position to train that hard for it.  I suppose if I really REALLY trained now, in several years I might actually have a shot at at least winning my age group. I’m not sure if I care that much, and that is on ME.  It isn’t that I can’t.  It’s that I won’t… that I choose not to.

I can’t do a full marathon.  NOT because I can’t (believe me I have been thinking very seriously about training for one… and maybe some day) but because I can’t justify in my head putting in that much work to git-er-done.  I am not incapable.  I choose to not put my effort there. For now.

I got all caught up in my head that I couldn’t lose weight.  I resented being told by the doctor that WW was the magic bullet and that all I needed to do was follow their sheeple and I would magically be perfect. “THE PLAN” works.  It completely works if you work the plan.  I just went out and bought (thank you for the Salvation Army 50% off clothes sale for Memorial Day) pants that are 2 sizes smaller than I have worn in YEARS and they fit (some actually are already baggy).  It works.  I’m kind of scared that when I reach goal that I won’t be able to maintain because the math really doesn’t work in my head still.  Anyone can lose weight if they are running 2 – 10 miles a day and eating 900 calories.  The trick is to be able to maintain a healthy weight and a healthy lifestyle.  I’m trying to learn.

I thought, I can’t.  But I have, I am.

I was registered for a half marathon when I was diagnosed with RA. I immediately went out and googled stuff (duh… and DOH) and what I read suggested that I can’t do half marathons (or 10ks or whatever).  My rheumy suggested that I probably ought not (at least then) run.  I was not controlled in my disease.  I am still only marginally controlled… If I insisted on this, I should train to walk very fast.  So I did.

Only a couple months after diagnosis, and just a month (maybe 6 weeks) after starting methotrexate, I finished my first half.  I almost quit.  Thanks to Monkey Butt walking out to walk me in I didn’t.  But I almost did.  My hips were screaming about an 18 on a scale of 1 to 10 and it was all I could do to move.  But I was stubborn and I was determined and I did it.

And I did it again.

And again.

This morning I have been reading.

One thing I read was the Cleveland Marathon Facebook page and I realized that my PR was even better than it should have been because the course was .18 miles longer than it was supposed to be (so I ‘ran’ 13.28 instead of 13.1 and I still shaved 19 minutes off my time).  That was surprising.  People are SOOOOO upset because there is a decent sized hill in about the middle of the half marathon course and it is a smallish brute.  Austin’s was way bigger.  And Cleveland had awesome signs to entertain you going up the hill.

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Did you ever stop and think that a lot of life is kind of like a marathon?  There are hills.  There is pain.  You get tired.  There is rain and heat and utter exhaustion.  But you keep going.  You might bitch later.  You might whine that you can’t can’t can’t can’t can’t… but you can.  And you do.

Don’t get me wrong (and I know I could take a LOT of grief for the misunderstanding here)… not everyone is cut out to run.  Not everyone wants to, cares to, thinks about, running races (or running at all).  There are people with RA that are way more debilitated than I am.  There are people who’s bodies will not allow them to get out of bed.  There are people (I love you Bear) who struggle every day and finally take a deep breath and admit that they need assistive devices.  But we all have our challenges. There is no shame in needing help.  There should be no judgement in running our own races and learning what we need to learn from them.

And in trying to help each other up the hills.

If I was an elite runner (or an elite anything), I probably would have a different mindset.  I would be determined to win at all costs.  But for me, the races are mostly just life.  We are all in it together.  We are all running our own races, and we are running side by side up the hills, through the rain.  Sometimes we fall and need help getting up.  Sometimes we just do what we need to do and push through it all alone.

But you can’t give up.

You don’t know who is watching you.

You can sit down on the curb sometimes and cry until you can’t cry any more, but in the end you just pick yourself up, wipe the dirt off your butt, and keep plodding along.

Some time around mile 9 or 10 (or 19 or 20 as I hear tell) you start to feel so very very alone.  Sometimes alone is accurate.  And that’s okay too.

And when the course gets rough and the hills get long and steep, it’s okay to stop and catch your breath… rest a bit… and keep on plodding on.

 

Love and Light
April
6/2/2018

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Posted in Half Marathon, motivation, rheumatoid arthritis

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Hydaway… nifty new water bottle

Posted on May 22, 2018

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This is an endorsement… but it is one on a product I bought deliberately and will buy again. Back in 2015 there was a really cool product on kickstarter and I remember watching their ‘ad’ and thinking that it was … Continue reading →

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On Pulmonary Rehab, Ending Chemo and Radiation Treatments and Planning for Disney Half Marathon 2019

Posted on January 21, 2018

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It has been quite a week.  Started off very… um… white and cold with just about a foot of snow in our yard from the latest storm.  We got ice first then snow so it was a miserable few days. … Continue reading →

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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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