So… it is NaJoWriMo and… because I really really need to prod my writing self in the butt (he he he… I said butt… sorry… LONG night) I think I’m going to publicly take up the challenge. And I think I’m … Continue reading
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
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
Posted in 30 day challenge
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.
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.
Author: April Wells
Updated July 4, 2015
Posted in 30 day challenge
Tagged 30 day challenge, a day in the life of RA, a mile in my mocassins
It’s really funny… I’ve spent a lot of time thinking about this very question. As an Aspie, logic and math dictate that it was almost pre-destined to happen. Autoimmune disorders run in my family. We have a history of RA. At some point, someone was going to draw the short straw.
Why do I have it? I needed to have it. I was diagnosed just a couple months before my daughter had her first seizure and I had to understand. Then she found out she had nephroptosis and I had to understand and I had to be her champion. Then Adam developed issues with the nerves in his leg and I had to understand. If I hadn’t dealt and coped I may not have been strong enough and determined enough to understand.
But… I understand.
It’s kind of ironic, too, that I do understand, because it means that I can “be there” for people who matter. I can be there because I understand a lot of things (Aspie… Epilepsy… RA… ). When I took up the flag for my daughter and put on the banner of Epilepsy parent, I tried to find that place where I could make a difference. I got some very snarky advice (“If you want to make a difference, send me money so I can “) and I struggled to find my voice. All the while I sat quietly and wrote. I wrote and wrote and I write and write and I answer questions and I provide hugs (real and virtual) and I help. Finally, after much poking and prodding about the fact that I make a difference, I realize that… I make a difference. It wasn’t the difference that I was determined I wanted to make, it was the difference that I needed to make.
Why do I have it? I don’t know. I meet with a lot of derision when I make the comment that I think all of the gods are just god and no matter what you call him/her/it, be you Christian, Islmaic, Pagan or a follower of the Flying Spaghetti Monster or Steve the Lettuce Head… god is god. Is it god? I don’t know. Is it Karma before the fact allowing me to help people? maybe. Is it genetics? yeah, duh. What caused the genetics? Does that really really matter in the grand scheme of things? not really.
The fact is that I do and it is a part of me and it helps to make me who I am. Questioning the why doesn’t change the reality. Quetsioning wastes energy and drags me down. Facts are facts. It’s not good, it’s not bad (most of the time), it’s just different. It’s my different. It’s my reality. And it’s my job to deal with it in the way I need to deal with it.
… okay, it was What little things makes your life easier… but the OCD grammar nazi in my head refused to let me write it.
What little things make my life easier? You know… it’s funny… there are several tricks and tools that help out day to day…
my truck is keyless entry and keyless start which is AWESOME
I have attached a ponytail holder to the drain plug in the bathtub to make pulling it up eaier.
Coffee cups with bit handls so my whole hand fits are good.
pill bottles without childproof caps
fingerless gloves
rubber bands on doorknobs to make gripping it easier
push on the way out bathroom doors so I don’t have to grab a dirty door handle RIGHT after I washed my hands
automagic sinks and soap dispencers that turn on without you having to touch them
BIG smart phones
Wool socks
pre-cut salad at the grocery store… pre-diced garlic…. anything that means I might not have to use a knife when my hands are not happy.
my e-book reader so I can carry ten books without having to carry ten books AND I can edit documents without my laptop
What REALLY are the little things that make my life easier?
Hugs
Having someone make a pot of coffee and bring me a cup. It’s even better when there is yummy creamer.
Being able to find somewhere very peaceful and quiet to rest (sometimes a nap). Now that I’m parking a 15 minute walk away from where I work, that is way less easy now than it used to be. I used to be able to walk out into the parking lot (3 or 4 minutes at most) and nap in the back seat of my truck. I miss that a lot.
Shoes that don’t hurt with socks that are warm and don’t hurt.
Conversations about my reality that don’t come off as judgmental or preachy or condescending.
Something I found out yesterday… if I have to fly international (read LONG flight)… being able to fly business class means that I hurt a WHOLE lot less when I land. this isn’t really such a small thing… but… it made a huge difference…
Posted in 30 day challenge
I guess that… since I’ve had my official diagnosis, I’ve never actually tried anything ‘alternative’. Given that I was active and getting worse for probably 2 years before I was diagnosed and I was trying just about everything then, I guess kind of I did.
I tried soaking in epsom salts.
I tried dark cherry juice
I tried salves and creams
I tried eating extremely healthy, eliminating almost all processed sugars and cutting fats
And I had so much inflammation that my rheumy coudln’t believe I was standing up the first day she saw me.
Since I started to take biologics and methotrexate, I’ve not tried anything that wasn’t perscribed other than Tiger Balm and BooBoo oil. Topical helps considerably but it doesn’t take it away. The bilogics can almost push it into nearly remission. Right now, I am more than happy with relying on pharasuticals.
Posted in 30 day challenge
Tagged 30 day chronic illness challenge, alternative remedies, day 9
Wow… I’m certain I have no idea even where to start with that one. I never saw myself here five years ago… five years ago I was very scared and worried that I would end up very soon on disability. My developer friend from work has been “there” recently, as well… where the pain is so great and the depression so deep thta you believe it with all of your heart. I thought, for a while, that I was stuck at work… that I would have to settle for where I was and never really enjoy work again.
Skip ahead five years… I’ve accumulated massive debt making memories with my family. We have seen small slices of the world. I have realized that what I learned in Beijing (then in reference to squatty potties) is very true about most things. It’s not good… It’s not bad… It’s just different. I’ve seen the world through the eyes of the people who live in the world. I guess that’s part of why I really don’t understand hate… I’ve seen mothers and fathers with their kids. I’ve seen couples in love. I’ve seen lonely people wishng they weren’t so lonely. I’ve seen people alone perfectly okay with that fact. People are people. Yes, there are assholes. There are assholes everywhere. And they are what they are.
Where do I see myself in five years? At least one or two “real” books along. At least one poetry book published (probably self published but there you go). I will (if I keep thinking happy thoughts) still be in the north east… still in the house that was waiting for me… still keeping on. I will have a new rheumy that is local my house to cut down on the wasted drive time getting across town… I will be spending more time at the lake… I will be back to “racing”… and with any luck at all, I won’t be traveling for work quite as much.
I guess… in five years, I see myself keeping on keeping on…
Posted in 30 day challenge
Tagged 30, in 5 years, It's not good it's not bad it 's just different
The biggest realization that I’ve had…
That I’m human and I’m mortal and that I can do it…
I’m human. I hurt, I am exhausted, I am incredibly cranky, I am depressed. While I would love to be able to hold myself to a higher standard than humanity, there is nothing higher than humanity. I need to suck it up princess and realize that. Nothing says human more than sitting in the dark wrapped in a special blanket crying your heart out because you are suddenly terrified. Nothing says human more than slowing down so your daughter can cross a finish line and not be Dead F#$(*&% Last in a race. Nothing says it more than breaking down when you are all alone and you are relying on the cheering of complete strangers to motivate you to go just one mile further… or the tears you shed in relief when you see your son’s long strides walking out to meet you to make sure that you are okay… or the utter elated exhaustion when you cross the finsih line and you realize that no matter how badly it hurts you did it. The past five (give or take) years have taught me that I’m human. I need to be gentle with myself. I need to set my expectations of myself correctly and I need to learn that there is only so much one human being can do.
I’m mortal. Go figure. I’ve found myself terrified of dying… more than once… of being put on disability… of being a burden on my family and on society. If it can happen to me, it can happen to anyone. I know RA has impacted my life expectancy. I have read the statistics.
I can do it. Whatever the it is… I can. I may not get it done as quickly as someone else might like. I know that I’ve let people down and I know that it has been unavoidable. I know that I have made most of my family proud and that matters way more than the scathing looks when I let people down. I have made a difference. I may not have made a HUGE difference… but I have made a difference and that matters.
More than absolutely anything else, though, I’ve learned how to be exactly the person that was missing in my life. I leanred how to be that for me and for other people. I’ve learned exactly how important THAT is and whether or not it matters to anyone else, being that person matters an awful lot to me.
Posted in 30 day challenge
Tagged 30 day chronic illness challenge, being real, realizations
What would I have told myself? Don’t listen to what anyone says. You know your body. It is your body. Get you behind end to the doctor and find out what is going on. It isn’t normal for a Disney freak to be so willing to go back to the hotel at 5 pm every day. It’s not normal to take thirty minutes to walk into the hotel from the parking lot… all alone… looking for puddles to try to soak your feet just to make it another 20 feet.
Don’t be scared. Don’t listen to what anyone says. You need to take care of yourself or you won’t be around to take care of everyone else.
Posted in 30 day challenge
Tagged 30 day chronic illness challenge, rheumatoid arthritis
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