Monthly Archives: October 2011

Reflections on a Lonely Childhood

I’ve been thinking (and reading) a lot, lately, about Asperger’s Syndrome.  It may or may not be relevant going forward but at the very least it will allow me to better understand the lack of shades of gray that my beautiful niece deals with.

As I’ve been reading Aspergirls and Pretending to be Normal it is more and more dawning on me how many of the characteristics are mine.  It makes me think so much of how much I resented my childhood and how much now what I dealt with my my childhood probably allowed me to mask the way things really were in my head.

I spent so much of my childhood reading.  I read almost constantly.  Ramona The Brave and Ribsby and hundreds of other books.  I was criticized for not watching out the windows.  I was sometimes spared the fear and pain of having to go ask people if it was okay if we swiped stuff from their trash.  Because I wasn’t actually allowed to have any friends it meant that I didn’t have to realize or deal with the fact that I didn’t (don’t) do well in crowd situations or with even small group interaction.

Now looking at it, I probably wouldn’t have done well with parties.  I always longed to be included.  But I’m not sure that being included would have been good.  I was always most happy when I was able to be all alone smelling the heavenly smells in the barn (burlap, hay, corn, wood, animal excrement).    Thinking now, I wonder if there are many other people who can tell at 80 miles an hour the difference between the smell of pig poop, horse poop and cow poop… I’m betting it is a me thing.

I’m not sure if it matters enough to me to pursue a diagnosis… but I’m pretty sure that I can count myself among the ranks of Aspergers Peeps…

Tools, Tricks and Technology

Okay, okay, I’m a self-confessed geek.  I totally enjoy technology for simply technology sake.  I actually read most of the manuals when fifty pounds of printed manuals came with every software purchase.  I even have been accused of reading those 65 page ‘agreements’ that no one ever reads when installing or buying new toys.

In all fairness, I also read cereal boxes and shampoo bottles for fun when I was younger and had more time and more brain cells available to me.

So it is no wonder that when the shiny new iPhone came out with its new gizmos and gadgets, I thought it was neat.  I liked the 8 mega pixel camera and the fact that it is now dual core (something to make my geeky little heart go pitter patter) and faster.  I didn’t think it was nifty enough to spend a crap ton of money on it when I had a perfectly good smart phone that I really liked and that I was sure was going to go to waste if I got a different toy.  And totally no technology (even for a geek like me) is worth standing in a line next to four armed guards for several hours.

But, while paroosing the offerings of the local ATT store (we are up for renewal on our cable/phone/internet and we are looking for alternatives to our current company) bear decided that because I was looking at them and thought they were cool (he looked at the specs and all the really cool features before we got there… i just said they looked cool) he decided that, since I was up for renewal, iPhone would be wonderful.  So he got me the 64 gig iPhone 4g.

I was right.  The camera is cool.
streaming Disney music from dutneslive.com all day at work is wicked cool (okay… it keeps me from going crazy or postal).
I didn’t really see a lot of practicality in Siri… then.  Okay, it will find a Mexican restaurant for you… but I live in the capital of there is a Mexican place (decent or dive) on almost every freaking street corner so that feature didn’t stand out as a major selling point.

Until this morning.

I was driving in this morning to work and traffic was light but it was still traffic.  I was thinking of all of these wonderful things that I want to write about and didn’t want to wreck (so writing them down or texting them to myself or my email or whatever ‘normal’ things was out).  I remembered the video I saw on Siri and what all it can do.  It can do notes… its voice recognition does notes… hmmmmm… one push of the big depressed circle button at the bottom, a swipe of the screen to unlock it and another longer press of the depressed button and there she was… the Siri automated voice asking me what I wanted.

Grin… nice

So I told the headsets that I had in my ears (mic included) note.

and she said note… what-cha want me to write chicky (not literally but in my head that is what she said).

I told her.
she wrote it in a note
saved it
and poof, I had my note without having to take my eyes off the road and without causing any accidents.

Got to thinking… this is really great.

My fingers aren’t always happy… but I can use almost anything to push the button and any part of my hand to unlock the screen… even when I’m in less than great shape, RA wise, I can take notes, set reminders and (oh yeah) find that handy-dandy Mexican Restaurant.

Wicked cool!

got to work, started my 57 open windows to doing the work I needed them to do for me, and started digging.  There are Android alternatives to the Siri thing (can’t actually call it an app really).

This page gave me food for thought for the Andoid operating system (my now pocket-sized computer that won’t connect to the ATT network, but it WILL connect to any WIFI that is available to me).  I need to try out these alternatives and let you know what I think.  Reading through the article, I think Speaktoit might fit my personality pretty well as long as I remember it isn’t necessarily for everyone.  Edwin apparently uses the same source as Siri does but since I don’t really care about some of the things that this is “supposed” to be for, only what I can have it help me do, I’m not sure I care what the nearest… well… you get the idea.

It is worth looking in to if only to see how I can make my technology work for me better and more effectively.

Happy Happy Geek!

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It’s All About the Attitude

I’ve been told that I’m the happiest person that people know.  I’m always chipper.  I’m always in a good mood.  I keep thinking about that comment.  I keep thinking about the way I hear other people talking.  I keep thinking … Continue reading

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I’ve been SO Stupid

be forewarned… this is a rant. I posted “my story” with my numbers today on facebook.  I have some amazingly supportive friends.  I didn’t actually anticipate the push back I got on my story.  BUT I was surprised. I posted … Continue reading

Happy International Arthritis Awareness Day… My Story

Hello.  My name is April.  I have Rheumatoid Arthritis.  I also have Osteoarthritis and Sjögren’s Syndrome and Raynaud’s Syndrome.  Yay me (sarcasm implied).

My Story…

My diagnosis was 2 years ago this coming December…. been a long 22 months.  My Rheumatologist (the doctor that usually takes care of those of us with things like RA and Lupus) said I had it at least 18 months before she saw me the first time, probably longer… based on amount of inflammation and joint damaged I already had when she first saw me.

If I were to think back, I would say that I probably started to see the early symptoms of RA back in probably 2002 or 2003, I definitely saw the effects of the disease in 2006 when I started considering having my wrist (broken in 1998) fixed.  RA is very likely the reason that the ‘fixed’ arm with the cadaver bone in it came apart and didn’t heal at all.  This precious piece of information I learned from the most recent orthopedist who (hopefully) fixed my arm for good this time.

I know that I was flaring on our last trip to Disney World (2008 summer) when my feet hurt so bad that every afternoon I hobbled back to the hotel room trying to get to the grass from the parking lot so it would hurt only a 12 (on a scale of 1 to 10) rather than the 18.  My toes were so inflamed that I had to wear by Teva sandals so I could adjust the toe strap as large as I could so my feet didn’t press against it.  When I got to the room (or the pool, whichever came first depending on which parking lot we got) I would step into the marginally cooler water to try to bring down the swelling enough to tough out the pain.  It wasn’t pretty.  And I love Disney and hated leaving the parks early but it was all I could do to make it through the afternoon.

I was told I was probably just running too much because I wasn’t running at all, but it would mean actually having to admit we aren’t the most amazing doctor that isn’t a doctor in the world.  It was a lot like “you are just typing too much” because obviously typing has ever made my shoulder/elbow/wrist/fingers swell to half again their normal size and I obviously type with my shoulder… ok…

I finally quit listening that all I had to do was not do the things that I loved in November 1010 (yeah… well over a year of being in pain and sucking it up and smiling and not letting on how badly it hurt) when my imaginary aches and pains started to be nodules on my knuckles and I had to quit walking let alone running because I ended up limping if I walked to the mailbox.  And somehow it was still all about overdoing it even though I wasn’t DOING anything…

So I got bitchy and put my foot down (figuratively… SO not literally) and went to the doctor.  My pcp looked at my swollen joints and my nodules and sent me immediately to the lab for blood work.  The next day I was told that my Rheumatoid Factor was extremely positive and I needed to find a Rheumatologist.

That was when Stephanie Booth and her trusty side kick Sean came into my life.  She was painfully (figuratively as well as literally) honest, sent me for TONS of x-rays and more blood work.  Turned out I had 26 involved joints (all my fingers and toes, wrists and ankles) and I was already facing joint damage.  Oh great.  I was 44, 175 pound (over weight but I had lost considerable weight at that point and I wasn’t horribly obese at the time).  Dr Booth suggests that I’m in good health and could loose a bit of weight, but I’m not gaining weight and I walk 4 to 6 days a week.  I’ve taken up wearing my Vebrams because I think they are cool and they are way comfortable on my ankles and knees.

I was sitting at my desk at work when the call came… You have rheumatoid arthritis (which I had already figured out because I dig and dig and dig).  I cried and cried because when I was a kid we visited a great aunt who’s fingers were twisted and gnarled and when I saw the pictures of RA, it was what I feared and remembered.  I was sure that I was going to have the same situation.

Dr Booth calmed my fears, assured me that RA isn’t as awful.  It is, but that is besides the point.  It isn’t an “old people” disease.  It is my body getting pissed off at itself and attacking the joints.  It can happen to young kids, skinny people, middle aged people, normal sized people, old people and heavy set people.  If you are a people, you can easily get RA.  There are some risk factors.  If there are other people in your gene pool that have another autoimmune disease (which is what RA and Raynauds and Sjögren’s Syndrome are… it is what Lupus and Juvenile Diabetes are, as well)… you have a greater chance of getting an autoimmune disease.  It pisses off the little immune system buggies when you have a joint issue (like my booboo wrist that I broke for example) and it can settle into the affected joint and get totally comfortable.

January 2010 I started on Prednisone and Methotrexate (both pills) as well as lucovor.  The prednisone went by the way side soon.  The methotrexate ramped up.  from 2 pills a week to 4 to 6 to 8 to 10 pills a week.  It did part of the job, not all of it.  The pills made me sick (dizzy, pukey, tired, horrible) for 28 hours or so.  made for an awful weekend.

When Dr Booth realized I wasn’t going to be great with the pills, I started on my first tummy injections (1 ml a week) which agrees with me much more than the pills.

The methotrexate makes my immune system not attack my body by turning it way down.  Enter the ease of getting the flu and colds and other communicable diseases.  It is a chemotherapy drug which means it also tends to make my hair thin.  Because it is a long term thing, I would need to lower the dose at best to get any of the hair back.  That is kind of hard.  I’ve never really been overly concerned with my looks, but sometimes having way thin hair is difficult.

But the methotrexate isn’t doing it all.  So in January of this year we added in the biologics. I’m also getting Enbrel shots in the tummy once a week.  This pushes the immune system buggies even further back… so now I worry about touching doors in public places and cups of pop and the buttons in the elevator.  I desperately try not to get completely nutsy over it and become a total germ-a-phobe but some times it isn’t easy.

But right now, because of the ‘fixing my booboo wrist again’ surgery and the fact that I had to stop all my RA meds for three weeks, I’m trying to stay positive about the current med mix fixing it again.  My last RA appointment I had lost ground that I worked so hard to gain.  Now it may mean that I have to change meds again and I’m scared.  Each change means a little stronger and a little worse immune system.

But RA doesn’t define me.  I have RA, I am not RA.

I have started to slow down a little and this is so not a bad thing.  I have started writing again for me and less for meeting deadlines.  This is good.  It means re-connecting with my dreams.

I have been spending more time with my family and less time spending too much time at work.  Again, not a bad thing.

I have completed two half marathons to prove to myself that I can.  I walk and take pictures every weekend with my bear and I spend time just being with my kids.

I understand what it means when my kids have a chronic condition and I don’t stop them from going to the doctor when I know they need to… and I know they need to.  RA has made me their biggest advocate, even more than I was before.  RA has changed my outlook on so many things.

I have RA, It doesn’t have me.

RA doesn’t have to have any of us, it can affect your life but it doesn’t have to ruin your life.

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Rain… YAY… Oy Vei

Woke up this morning to the wonderful music of rain on the side of the house.  It had been so long (months) since we had any really appreciable rain and we have needed it so desperately.  We currently are looking … Continue reading

A New Tomorrow

At the risk of sounding like someone added something REALLY good to my Methotrexate I’m starting to think that there may be some very interesting mixed blessings that came along with my new reality.

Dealing with all of the interesting-ness that has been my life and the lives of my family… it has me started thinking more and more about what I love to do, what I have always loved to do… what I have always been very discouraged from doing. What I have been made fun of for doing.  What I’ve been encouraged by teachers to do but only teachers (who obviously know NOTHING anyway or they wouldn’t be teaching… except the one who encouraged me the most is actually following his dream too… just also putting food on the table at the same time)…

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The Phoenix lives for 500 to 1000 years depending on what legend you read. Once that time is over, it builds its own funeral pyre, throws itself into the flames and as it dies, it is reborn anew, rising from the ashes to live another 500 to 1000 years.

Now… I think a lot about me, and who I am and what I want my kids to know they can do and how to live my dreams.  I feel like I have been through several lifetimes, if the 1000 years is only figurative.

I think my RA/Sjögren’s/Raynauds diagnoses helped me build my latest pyre.  The fire is taking a pretty good chunk of time, but slowly I’m climbing out of the ashes and learning to be me.  I’m learning that I may really have talent.  I’m learning that you are never too old to learn to take wing and fly.  I’m learning that dreams are dreams and they may evolve, they make slumber, but they are always there.

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Don’t Friend My Friends

Yesterday someone posted on facebook a very CAPITALIZED comment that struck me as incredibly ironic as well as incredibly irritated. In short, the comment screamed at EVERYONE to not look at the poster’s friend list and trying to friend their … Continue reading