Okay… so… I know it’s been a quiet week or so. But I’ve been in Brazil again for business and it’s really been a long trip. Up early… Up late… busy stressed… It was a realy cool weekend in Ubatuba … Continue reading
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
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
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?
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…
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Infusion time gives that a whole different meaning
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.
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So… here I am (again) sitting on the front porch listening to the front yard sounds. Yeah, yeah, yeah, I know. I be here a lot doing this. But it is a wonderfully peaceful place to be. I will miss … Continue reading
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…
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.
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.