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Chronic Illness 30 day challenge… day 14… five things I’m grateful for

Day 14… five things for which I am grateful…. (that prepositional phrase sounds better to me that way… not even because I learned to not end sentences with prepositions… it just sounds better… )….. My family (family of birth, and … Continue reading

Chronic Illness 30 day challenge… day 13… Has your condition had any effect on your mental health

30 day RA information challenge

I realized that, I guess it is time to get back to this thread again.  It’s been kind of a while since I’ve thought about any of the questions, let alone the answers.

So… today is the day I’m tackling 13…

I’m not sure the answer to this question.  I mean… since I was diagnosed, I’ve changed a lot.  The way I look at things and think about things has changed a lot.  But I’m not sure my mental health has changed.

I’m still aspie…. so… I’m still aspie.  I still have days when I melt down and go hide until I can pull it all back together.  I have days where I HATE my body and what it is doing to itself.  There are many days that I hate my hands because they hurt and that is a limiting factor in a good deal of my life.  I’ve started to take life a little slower and enjoy more of it.  I spend more time just sitting on the porch listening to the morning sounds, even in the dead of winter.

I’m harder on myself, though.  I push myself too hard and I often pay the price for it… and when I pay the price for it, I beat myself up for being stupid for pushing myself and then I beat myself up for my body hurting so much when I push myself.

I’m not sure, though, how much of my mental changes have been as a result of RA… and how many of them have been a result of getting older and growing into who I am.

I suppose I could dissolve into… I am my RA and my RA is me and waaaaaaaaaaaaaaa… but… I know that my RA is forever and it will be a part of me as long as I keep trudging on… but it is only a PART of me and it can’t define me.

I am what I am and that’s all that I am.

so… I guess… to keep beating on something that is really a non-entity… my mental health has changed, but I really don’t know how or why to connect it to RA.

Author: April Wells
Updated October 22, 2015

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Patience and Frustration

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I’ve had all I can stands I can’t stands no more. There comes a point where being ‘nice’ and being patient is just highly over rated.   There comes a point where it’s just frustrating and makes me feel like … Continue reading

Field Guides

Wikipedia defines a field guide like this:

A field guide is a book designed to help the reader identify wildlife (plants or animals) or other objects of natural occurrence (e.g. minerals). It is generally designed to be brought into the ‘field’ or local area where such objects exist to help distinguish between similar objects.[1] Field guides are often designed to help users distinguish animals and plants that may be similar in appearance but are not necessarily closely related.

I have several field guides… some larger than others… most with pretty pictures or drawings.  I even have a field guide that doesn’t exactly qualify as a field guide (it’s kind of a field guide for geeks and it makes me smile).

I’ve been looking at the ones that I have and thinking… always a scary thing… that RA needs to have a field guide… maybe several conditions do, but right now I’ve been thinking about RA.  I’ve been thinking… and researching… and wondering…

 

What do you think?  A field guide… I really liked reading “The First Year: Rheumatoid Arthritis: An Essential Guide for the Newly Diagnosed” when I was first diagnosed, but there are things that it leaves out… things that people want to know… 

 

I’m thinking… maybe?

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Under Productive Weekend

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So, here I sit, in the quiet of not quite dawn on Sunday morning.  I have coffee (yes, pumpkin creamer… in Sheetz Winter Blend… it’s interesting).  I have taken a long hot bath to help ease out the achies of … Continue reading

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Fall

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It’s morning.  It’s early September.  There are leaves all over the yard from the squirrels and the rain.  The windows are wide open and I’m listening to the rustle of leaves and my wind chimes singing from the front porch… … Continue reading

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WHY ME!?!?!?!?

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Sometimes it gets very easy to fall into the  “Why Me”s. Why do I have this <insert what this is>? Why do my kids have to fight <whatever it is they are fighting>? What did I/We/You do to deserve this? … Continue reading

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Packing Life into Every Moment

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I’ve been thinking about a comment that someone made to merecently.  They had been looking at the pictures I was posting on Facebook, and wondered how we packed so much into a single weekend.  It’s funny, because we seem to … Continue reading

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When Your Heart Hurts

I’ve been incredibly moody lately.  I’m not sure why.  I know I can’t blame it on the moon.  This morning, as I sit listening to the rain on the trees outside my office window and the birds lending their voices … Continue reading

30 Day Chronic Illness Challenge… Day 12: Dear person who does not have RA… This is the mile in my moccasins.

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Dear healthy person… or… maybe… dear person who does not have RA… These are my moccasins.  And this is my mile… please do not mistake MY mile for the mile of everyone with RA.  This is mine.  I’ve heard it said, if you’ve met one person with Aspergers, you’ve met one person with Aspergers.  The same, I venture, can be said about people with  RA.  This is me.  My story, so to speak.

I know that I do best in the morning. This means that I get up at a time that others believe to be obscenely early. It is. Truth be told, it is. I get up about 4 am most days. My dog knows this and plans her pee schedule to coincide. It’s thoughtful of her. I wake and take stock of how I’m feeling. I wiggle my fingers and toes to determine how stiff they are. This helps me to determine what I might be doing in the next couple hours. There are mornings that I decide to not let the dog know I’m awake and go back to sleep for an hour. Most days I get up, hobble to let her out and get on with my morning routine.

Yes, hobble. Most mornings it takes at least half an hour before my ankles are up to actually working correctly. It’s not so much that there is a lot of pain. If I don’t have a flair (think white hot ice picks jammed into joints… and they stay white hot… and they stay with you for DAYS) I can work the kinks out and start to feel human. If I feel human enough, I lace up my tennies and go for a “run”. I’ve been told to not run. I should walk very fast. Walking is good. It doesn’t dink with the joints in my ankles/knees/hips as much.

As much

Now that my big project is over, I am back to being able to actually work at training. I walk three street lights and jog one… walk three jog one. It’s a close as I can get to actually doing the Run-Walk-Run method of Jeff Galloway. I’m currently training to Christmas music (despite it being July) because I’m working my way up to The Santa Hustle on December 20.
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Jog
Shower
get ready for work
or…

work at feeling more human, soak the aches, get ready for work.

High ho, hi ho, it’s off to work I go. I park about 3/4 of a mile from where I work. I park at the farthest point of the lot (yes, deliberately) so I have a chance to try to work more kinks out before work. If I hurt too much, I walk out the sidewalk. If I feel reasonably well I take the 6 or 7 stairs up to the street sidewalk and do a mental happy dance.
If it is wet or icy the walk is a mine field. If I fall (and I’ve fallen a few times) it frequently triggers a flare in the joint I hit. Flair or not, it triggers mortification. I fall more often because between the drugs and the disease I drop things WAY more easily and I trip easier.
Make it to work, sweating like a horse (pigs do not sweat) and fix my coffee and settle into my day.
I work in IT. It means I get to sit which is good.

Stress wreaks havoc on my body. If I have a particularly long or stressful day, I can feel it by the middle of the afternoon. It feels a lot like someone has been beating on me with a wiffle ball bat while I’ve been stretched on “the wrack” (1600-17– torture device). It hurts to breathe, it hurts to move, it hurts to think.

3/4 mile back to the car, sit for a couple minutes because the walk in full backpack is taxing on a good day, and off to home.

a hot bath is heavenly.

I hurt by evening and am very much ready to sleep before 8 pm.
Some nights sleep is elusive.
Some nights I ache so badly that I can’t get comfortable. THESE are the nights I could chuck the cat across the room.

Sprinkle in the fact that I have to remember to try to not touch doorknobs or elevator buttons for fear of catching the cold/flu/whatever of the child of the last hundred people who have touched the whatever. Be careful in public bathrooms, be VERY careful in restaurants. Carry my own wrapped straws because I don’t know who hasn’t washed their hands. Don’t think about seeing counter service places drop the gray bin of silverware onto the floor, stoop down to pick it up and put it back in the gray bin and put the gray bin back on the counter for people to pick their utensils out of. Smile and drink the lemonade of the kids down the street because it matters and don’t think about the insects or germs that might be in it. Watch my cuts and scrapes for infection… wear a hat or a scarf almost everywhere to keep my head (thank you SO much methotrexate for thinning my hair so much that you can see scalp) from getting sun-burned.

Plan your life around monthly infusions, tests and weekly shots in the stomach.
Remember that everyone is fighting their own battles
Push harder than I’m supposed to to make sure that I keep going because I’m terrified that if I slow down I won’t be able to get going again and I don’t know what I will do if I can’t get going again.
Keep on keeping on pushing to the next half marathon because if I keep being able to finish races, I know that I will be able to keep on keeping on.
Keep on listening to Disney music. No, I don’t live in a fantasy world. Far from it. I live in what is very very real, but there are days that just hearing the words in the lyrics reminds me that everyone is in it together and we really should help each other out along the way.

smile, we all have our own crap and yours might be the only smile someone who is feeling worse sees. Yes, I’m a bit on the goofy side, but it keeps life interesting.
30 day RA information challenge

Author: April Wells
Updated July 4, 2015