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People who use mobility scooters

This gallery contains 2 photos.

Fair warning… I’m irritated and hurt… Mobility scooters… ecvs… rollators… wheelchairs… assistive devices… you see people using them even if you pretend you don’t see them… you look through them as if they don’t exist. You judge people who use … Continue reading

Godwinks

Last night (I didn’t stay awake long enough to watch it… I’m hoping to see it yet this season) on Hallmark channel was a Godwink Christmas.  When I first started to hear the ads for the program, I started to (go figure) google it.  I found out that, not only is it a movie for Christmas but it is also a series of books.  I also determined that (go figure) the books are available in ebook format.  I fought the urge valiantly for several days to not start on the series. Last night, I failed.  I bought the first volume.  It joined the several thousand books on my iPad.  I love being able to carry a library effortlessly.

I didn’t get far (after clearing the leaves and fixing the inflatables and working around the house I was really really tired) but I did get far enough to find out what, exactly, a God Wink is.  SQuire Rushnell (the author of the series) started to use the phrase Godwink to replace Godsend or coincidence.  They are those moments in your day or your life when something happens to reassure of your path, or to help you at some point in your path.  It’s been something that I’ve always thought about it being that kind of time when I end up taking too long getting my coffee at Sheetz and miss an accident… or when I have forgotten the fifteenth thing on my way to work which causes me to “luck in to” see one of the ships coming through.

The book… the definition… everything… got me thinking about some of my really big Godwinks that have happened over the years… 

Being diagnosed with RA might not be something that someone would consider to be one.  But if I hadn’t been diagnosed with RA, I might have flipped shit way more when Squirrel Girl was diagnosed with Epilepsy (and later Gastroparesis and later still RA) and later when Monkey Butt was diagnosed with Sjogrens, Epilepsy, and the nerve damage in his leg.

When I had to go hunting for what to really really do when your daughter is diagnosed with epilepsy… bang…Godwink… I met someone from the middle of Pennsylvania who’s daughter has epilepsy who is amazing and willing to share information and willing to share information and support.  Later, I met someone from Canada who is well versed in Epilepsy.  The PA nurse later had to come to me to get information and moral support on RA (Godwink) and the woman from Canada had to get support and information from me on RA and Gastroparesis.  

Sometimes the Godwinks that go around come around.  

More recently… in my Weight Watchers (sorry… I still have trouble with calling it WW) adventure… I was doing remarkably well (apparently that is unusual) with the online only adventure.  I was nearing the point where I was going to be goal and was going to be lifetime.  I asked the WW person on line how one goes about goal and lifetime.  I found out that you can never ever ever ever ever do either of those things, officially, if you are online only.  I was, originally, irate about the fact that online only people get mislead (unless you chase the information deliberately) and irritated that I would have to spend way more to join an in person meeting to finish up my adventure.  

It turns out that the situation was yet another Godwink.  I met some very wonderful women through those meetings.  I still really don’t do people so very well… I don’t know if it will ever make me comfortable being in group… but the women who I met have brought me what I really need right now.  They reach out to talk to me about Christmas lights… about pictures I take… about my adventure… about running… I have faith that some how I will be able to be able to give back the Godwinks that I’ve received.  

I’m not sure what the future will bring.  But… I have faith that there will be more winks in my future… in both directions. 

Love and Light
April
11/20/2018

Made In America Half Marathon Race Recap

This race review is written from the back of the pack… no judgement on that at all just information… the experience is probably different for the people who were nearer the front. 

The Made In America Half, in Massilon Ohio was last weekend. I was torn as to whether (weather) or not to do the race.  I kept thinking that it was going to be 25 degrees Fahrenheit.  The race only cost me $35 to register.  Bear was feeling really really crappy and wasn’t going to be able to go even sit and wait for me (for three hours) in the car in a parking lot.  I was torn as to whether or not it was going to be worth going. 

I went.

I wanted desperately to come in at about 2:43 start to finish.

I didn’t.

I finished at 3:01:50.  Not awful.  Not time to turn in form corral placement for Disney, but not awful.  

I’m used to being at the back of the pack.  I’m not fast, but I am strong (~Baymax).  This race only had just under 300 people who started the race.  I didn’t finish last.  I didn’t not finish.  It was all okay.

It was a really hard race, though, in a lot of ways. 

The first four miles are hilly.  They don’t actually close the roads.  For a ways they close one lane.  For a ways they don’t close any of the lanes.  For a ways the route is sketchily market at best.  But it is a $35 race.   And you get a shirt and a medal.

The last 9 miles is on the Towpath.  The Towpath in Massilon isn’t as well kept up as the Towpath in Brecksville.  I think it might have been paved at some point in its life, at least parts of it, but now it isn’t.  It’s packed dirt.  So this can actually be said to be a combination road race and trail race.  They did (I think they did) salt the course so the ice that likely was there melted even where the tree cover was heavy.

For a while I was sort of traveling near people, but the herd soon thinned out considerably.  There were a couple people I could see (if the trail bent right) ahead of me (the yellow jacket helped), and there were a couple people who were behind me that I knew for sure were still back there (there the red jackets stood out) but I was kind of the half way point between people who were a half or 3/4 miles apart.  One woman passed me at about mile 9, I passed another woman at about mile 11.  For most of the race, though, I was alone.  I had entirely too long to think.

There wasn’t an issue with being in the way of anything after mile 4.  I passed a couple water stops, but for the most part it was flying alone.  There was a train track for a while, there was road for a while, there were even a few houses, but when you are all alone, you are pretty much all alone. 

It was a good race.  I would probably do it again.  The biggest thing that was a let down for me was, at the end, there were no bananas.  There was nothing even resembling healthy. There were cookies and chips and water.  I would have given anything for either chocolate milk or bananas or even an apple… but… it was not to be.

I did it.  I finished.  I enjoyed the scenery and I did use it as a training “run” but… it was a very hard morning in a lot of ways.  

An Open Apology for Being Me

Okay, so the title is a little disingenuous.  I do not ever (any more) apologize for being me. You don’t like it?  Chuck Fou Yarley… drive on by.  I get tired of people trying to make it my fault for their shit.  I’m done.

That said… I was running through the groups, on Facebook, that I really (sometimes) enjoy reading this morning and I feel like this all needs to be said…

To the person with RA who’s response to someone asking for help/advice in desperation who’s only response to the cry for help was “buy a dishwasher or stop washing dishes”… you’re not part of the solution, you, my dear troll, are part of the problem.  If you are in the group because you have RA and your only ONLY response is snark, I’m sorry that the rest of us take up space in your world . It must be nice being queen of the May, but you know what… bite me. I may not have answers for the person asking but I’m damn sure either going to say nothing or try to be supportive and understanding.  RA sucks.  Being a b#$%h sucks worse.  She didn’t deserve your snark.  I apologize for trying to maintain as normal a life as I can while gagging down a fist full of pills every day to help me do that.  It keeps me semi-functional.

To the person who felt compelled (again) to bitch about those of us who are such dismal failures that we can ‘only’ finish a half marathon in 2:45  or longer who are taking up valuable space on the road (having paid our 100 – 200 – 300 dollars to be in the same freaking race as you) by walking part of the race while your narrow ass is… oh wait… yeah… STARTING BEHIND US else you wouldn’t be bitching about us being there you would have already crossed the finish line…  Walkers shouldn’t be allowed in races.  Really?  What exactly is the cut off for speed in a race?  Because, you know, I may not be doing a 4 minute mile for 13 miles, but I’ve improved significantly over the past year.  What is the speed cut off to be in your special neck of the world?  You’re not talking about running Boston or New York or even Chicago… your talking about running a freaking Disney race for crying out loud.  If the people you are bitching about are in any way in front of you, that says way more about you than about them.  The only exception to that statement is the Dead Last Club who start out with the balloon ladies and see how many kills they can accumulate by the finish line.  Them I get, but you know what… they have manners… they probably would rather have more slower people in the race so there are more people they can pass.  You… princess butt muffin… you are just whining to whine.  The waaaaaaambulance is coming so hop on.  To you I apologize for taking up your valuable space and air.

I apologize for not running when obviously the fact that I can run walk run faster than you can flat out run simply makes me a poser.  My race, my pace and when I pass you walking while you are running, I won’t pass judgement on you, I will just run my race.

I apologize for caring and trying to be a friend when it has become obvious that lies and deceit are what was driving everything.  If you read this and you understand that this time it is directed at you… good.  If not, whatever.

And finally (and this one is genuine) I apologize to WW for passing judgement when I shouldn’t have.  I still don’t get the logic and I still kind of track in a way that works for me (ie… If I have a smoothie and I know that the smoothie is one cup and it WILL hold me for a few hours… I will still track it as 0 points).  It worked for me.  Online worked for me.  Meetings are working for me (albeit the early early early one so I can still do crap on my Saturday).  I’m 2 weeks in to maintenance and one week out from infusion still tracking to my goal weight.  Yesterday I ate too much… today will be better.

And to you… I apologize for the rant.  But when my head is going to explode because it is so full of the stupid banging around in there, I feel compelled (driven) to let it out before it spills out on my family and co-workers.  It’s Monday and a no-run (rain and rest day and post leaf blowing day) day and there are days when rant is the only way to stay sane.

Love and Light
April
11/5/2018

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GOAL!!! And learning to be gentle with myself

My WW weigh in should have been Saturday 10/20.  By the time I should have been weighing in, I needed to be 30 miles away at a race. So… I went Friday during the store’s open hour to weigh in… … Continue reading

Fairytale challenge training… day 1

So, I’m following the Galloway training plan from the RunDisney site. 19 easy weeks to a 10K/half marathon.

Yeah okay

Easy peasy

I don’t usually get to do a mid week training run during the daylight. I typically run at about 4:30 am. It’s nice to see what I’m passing better.

It was in the 40s and bright and sunny.

It bodes well for the rest of training.

April

10/23/2018

Non Scale Victory… 1 hour 16 minutes and 5 seconds…

 

Today was the Towpath Marathon Race.  No, I did not do the marathon.  I’m not there yet.  Yet…  I didn’t even do the half marathon… which is my all time favorite distance… I did the 10k so I can work and work and work to get the best corral humanly (for me) possible in the Disney Fairytale Challenge.

Preface the rest of this with… the reason I started to try to lose weight was to shave time off of my race pace.  For every 5 pounds lost you are supposed to be able to shave 10 seconds off of your race pace.  I’m just a wee bit off from 50 pounds… that should have been 100 seconds a mile… 2 minutes… roughly…

Back in January, I was hoping to get my per minute mile down from 18 min mile to at most 14 min mile.  That would give me a bit of buffer on a “you have to be under 16 minute mile” race pace.

Today was mostly flat.
Today was muddy as snot
Today was incredibly humid (thank you rain)
Today I finished my 10k in 1 hour 16 minutes 5 seconds.  I was 277th out of 325.  I passed people!  True, I did intervals I didn’t run the whole 6 miles, and with the humidity, some of the miles were harder than others.  But I did them and my average pace was 12:15 minutes a mile.  That puts me right about being able to finish a half in just a hair’s breadth of 2:44.  I may actually be able to move up a corral not just feel like I will be comfortable finishing ahead of the balloon ladies.

Sometimes I beat myself up because people look down on me (you know, those INCREDIBLY SUPPORTIVE people) because I run/walk/run.  I’ve been told more than once that if I’m not running (you know, at a 16 minute “run” pace) the whole race, it really doesn’t count because walking intervals mean that I’m not really running the race.  I’m doing 10K… I’m doing half marathon… I’m beating people who are “running” the whole thing and leaving them in my dust… but I’m not running and it doesn’t count because I’m not as good as they are…. k…

Sometimes I beat myself up because I don’t seem to be making a whole lot of progress.

Sometimes I beat myself up because I’m not as fast, now, as I would love to be.

But today… today I finished strong.  I finished faster than I ever have.  I finished with my Goofy ears flapping in the breeze.  I also finished with mud splattered up the legs of my leggings and with filthy Asics.

My race, my pace.

I am down from a size 20 to a size 8 (10 depending on the cut).  I have lost a bag of squirrel corn.  I feel better than I have in years and years even when my joints ache and I am struggling to breathe in the humidity.

The Towpath Marathon 10k?

Awesome race.

Muddy!  Way muddy.  It was fun to watch people trying to dodge the enormous puddles.  I ran through them.  I needed my best time.  I am not in it to look sexy while I run or at the finish line.

Rude people?  Oh hell yes.  The course is an out and back.  That means that you run to a turnaround point on the path and you re-run the path you just ran.  That means that there are, quite likely, more people running the opposite way you are running.  Their race, their pace.  Add to it the fact ALL three races ended up on the same path for part of the course and you had the potential for having people going in different directions at any given spot.  That said… STAY THE HELL ON YOUR SIDE OF THE PATH!!! I have every bit as much right to my two feet of the very furthest right side of the path as you and your herd (three… four across) has to be on your side.  Forgive me for not leaving the course… leaving the path… so you and your best buds can run abreast.  I’m very freaking happy that you made the turn around before me.  That’s awesome.  I frankly could give a shit.  What I do care about is being able to run my run without getting shouldered aside because I have the audacity to be running the opposite direction.

BITE ME.

To the young woman who was doing the 10k with her dad (I think dad)… the one who was at mile 2.5 when I was coming back at mile 4 plus… I hope with all of my heart that you were able to have the time to finish and that you crossed the finish line.  I’m not sure if she had muscular dystrophy or  what she had but she was running her own race and it was quite awesome to high five her.

It was kind of disappointing that only the full and half runners got medals.

The bagel sandwiches were… not so much…

It would have been very very awesome to get a bottle of water at the finish line with the bananas and apples and candy rather than having to waste cup after cup after cup of poured water… or at lest to be able to refill the cups.

Today, I realized that… while my why was bigger than my but (or even my butt)… my why has changed.  And I’m proud of the work I have done to get here.

OH… and my Goofy ears were a big hit again.  Go me!

Love and Light
April
10/7/2018

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Tips…for every day… RDBlog week day 2

The prompt for Tuesday is Tips… pretty much any tips. The longer I live with this RA beastie, the more I realize that any tips and tricks I can amass, the better the days end up going.  I also realize … Continue reading

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RDBlog Week

Okay, so here it is Sunday morning.  Windows open, hands freezing (It’s a balmy 48 degrees) loving early autumn.  I’m lucky.  Cold doesn’t make my hands scream nearly as much as hot and humid.  I’m loving this.  The only real … Continue reading

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

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