Category Archives: Beginnings

Conteplative Morning

Been a hard holiday week.  Did too much.  Stressed too much.  Paying for it now.  Nothing horrible (relax mom) just… crap.

I got my pneumonia shot on Saturday and when the pharmacist told me it is reported to hurt a little more than the flu shot (which frankly didn’t seem to hurt at all) I figured, ah… okay.  This one might actually get sore for a bit.

DANG

It felt like someone got angry with me and beat the crap out of my arm with a ball bat.  It got bad enough I got up at midnight and took over the counter pain relievers to take the edge off.  It’s Tuesday and I’m starting to not feel it any more.

Yesterday evening I started my Humira.  I’m still convinced it is just cheaper to let the freaking RA have its way.  $2100 a month for this one… $1800 a month for the last one… and what happens when this one doesn’t work?  It just gets worse and worse.  Geeze.

I don’t know if it was just everything catching up to me, or if it was the Humira, but I started having the weirdest dreams last night… I was freezing… and itchy.  Not a pleasant night’s sleep.

And wake up this morning with sore throat and runny nose.  Great.  Oh boy.

sigh… ah well.  it is what it is.  I’m hoping that the Humira works.  If it doesn’t I’m scared of whatever is next.

Got up early this morning, let the dog out (how does she know it is 4 am?) and started thinking again about buying myself a domain for this blog.  I’m pretty sure it won’t really make much of a difference… The same people who read it now will read it then and that’s about all… but it is worth a shot to try to reach out to more people.

Today is pay day… I will have the funds to buy the domain…. I’ve been seriously toying with doing it for several months.  Now that I have books in progress (one on RA and one on Epilepsy so far) maybe it is time for a little vanity (a vanity page is what they call it when you try to put a brand name on yourself.

Sigh…

Maybe it is really time to take myself seriously…

What do you think?

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.

Taking a Chance. Take the Time.

Notice please that the title says take THE time… not take YOUR time.  The only way you will ever make your dreams come true is to work at them.  Not when you have the time, not when you have nothing better to do… Work at it every day.  Five minutes every day.  An hour every day.  Research every day, work at the dream every day… Every minute you can find to spend on your dream is a minute closer you are to it.  You can do it if your heart wants to badly enough.

I have been hearing a couple people talk about writing.  Writing and publishing and young people.  And lets face it, it is a topic close to my heart.

Many of you have probably read my brain dumps about being told that people like me don’t write… if we write we certainly don’t publish… and if by some ridiculous fluke of fate we publish, we never ever ever will get paid for it.  It took me decades to get past the recordings in my head and get my collective crap in gear and do it.  I’m still not quite to where I need to be (writing for the sheer love of writing and because it is me) but I’m getting there.

I’ve been looking long and hard at self publishing.  It used to be less easy.  It still can be a tad tricky… but it is very do-able.  And it really is a great way for someone who is unsure where to go or what to do to break into their very own dreams.

I won’t say it is a get rich quick thing… it isn’t.  When you are starting out writing it is a good bit of work (work you, hopefully, enjoy… but still work) for not a whole lot of pay.  If you become well known and followed, you will make more money for every hour you put into working.  Eventually you don’t look longingly at the raise a fast food job would provide.  If you are in it because you know in your heart you need to write, you will keep at it because it is what you do.  If you are in it for the money, you won’t keep after it long.

Where do you start?
Office… Open Office (it’s free)… notepad… however you can get your words into digital format.  You can get them into the tools and toys later.  Save them.  Back them up.  Email them to people YOU TRUST.  Use Google Docs to back them up.  I email mine into google docs with google mail and send them at the same time to evernote.  All of them can be had for free and all of them will be places where you can safely keep them.  All have their own features.   Mostly, they are free and I know where my words go.

Where can you publish them?
Nook specific format (and listing on Barnes and Nobel) pubit.barnesandnoble.com/
Kindle and Amazon listing
kdp.amazon.com
OH… and don’t discount or forget that you can publish for iPad(iPod) even though the readers for Nook and Kindle are free free free for whatever mobile device your computer you use (http://www.ipadpublishing.net/).  This one is a little less intuitive and maybe a little less “free” but I still have to dig into that.
TAKE THE TIME to do the research here.  It won’t take a lot of time to research the ins and outs of publishing on each of them, and it is well worth the time.  Take notes.  Keep the notes in a safe place and make sure you comply with everything they say they need.  It matters and it is good practice for your future.

— the same thing is true no matter what dream you are chasing… if you are skydiving… dig for the important things to know and what you have to practice and what you have to pay… whatever the dream, the research on the requirements matters and will pay off in the end.

Pricing…
Don’t aim for the moon.  One place to start is to publish for free.  Yeah, I know.  If you publish for free you aren’t making any money.  SO.  You can build a following (people will SO take the chance on liking or not liking a free book… article… short story… brain dump… way before they will start to sink money into an unknown commodity… ) and you can benefit from the feedback from real readers (PLEASE don’t take responses personally… you don’t know who is leaving the feedback… some people just really really enjoy dumping on people… others are going to be people who just don’t like your style.  I try very hard to leave constructive feedback if I leave feedback… but some people are just mean… and you know as well as I do that there are authors that you just don’t “like” and others that you are incredibly fond of just because of the style).  Once you have put a couple things out there and have gotten your feet wet (download what you have published… look at how the formatting works or doesn’t work… what you might change or keep the same next time). OH… and just as important as all of these for publishing your first couple for free… you don’t have to worry about figuring out how to pay the taxes on no income… taxes are something that anyone who gets income have to consider no matter your age.

— no matter the dream… there are inexpensive ways to start.  Volunteer to help someone who already does it.  Start small and work your way up.  Every bit of experience is experience you can leverage later.  If you want to learn to play guitar, look at taking a free lesson or two at different music stores.  The piano, maybe a local church will let you practice for a few minutes every week or a couple times a week.  Ask questions of the people who play farmer’s markets or fairs or whatever… in general people who are currently doing whatever you want to do (especially if you don’t try to get someone like Lady GaGa to spend ten minutes with you but someone who is just a little further down the path than you are now…they remember and they don’t think they are too good to take the time).  Find an older magician and take time to visit with them if you want to learn magic.  They probably don’t have a lot of people beating down their doors and they will be willing to help the up and coming  people if you are polite and willing to take the chance.  It can be really scary to put yourself out there and take the chance… but you are taking chances anyway every day… this is just one that will matter forever.

Next Step?
When you are ready for it to be serious… when you are ready to take it to the next level and for it to be more of a vocation than a hobby… You will need to start to invest in ISBN numbers and start keeping better and better records… but we will leave that discussion for another post.

Remember, they are your dreams.  Don’t let anyone take them away from you.


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Beginnings

I’ve been thinking a lot about beginnings, my beginnings.  I know that everyone is more than the sum of all of the things that went into where they are now.  I know though, that all of what came before does … Continue reading

What I’m Grateful For… Day 1… my Backflip

Okay… I read the 1000 Awesome Things blog (well… started reading it) and decided that it is something I need to do.  Not because I figure I will be a smashing success or anything… I honestly don’t figure I will ever be a smashing success at… much I haven’t already succeeded at but I figure I totally need to get my head on straight and get my life more positive.

So Here I go…

Today, I am most totally grateful for my entirely too expensive backflip phone.

It has freed me to be able to take notes on the go… I invested in the Documents to Go app so I can edit word documents and excel spreadsheets wherever I am.  That means I can keep track of Amandya’s seizures, my RA days and everyones meds.  I can keep track of when Adam needs to have things in for college and when library books are due (darn… that’s tomorrow… crap…) .

I can blog on the “run” so to speak… And I have, even though most of those are short and more to the point than my rambling ones that happen when I sit at the computer… like this…

I can take pictures that I might have missed if it weren’t for having my phone (although the backflip kind of sucks at pictures because it takes FOREVER to get the camera to load)  and I can take video on the fly in case I really need to and I don’t have my ipod.

I am grateful for the comfort that it brings just knowing it is there and I can lug a phone rather than a computer and still sometimes get done what I would like to get done…

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Wow, what you don’t know

It has been an adventuresome week… an educational week…. and a week full of toys… Tonight I sit on the edge of 10 more MTX enjoying the feeling decent while I still can. Saturday Amandya had another seizure.  SO… 6 … Continue reading

Happy New Year

Sitting here… furry little dog at my feet… contemplating… everything

It is interesting, the first day that I start taking my methatrexate is the first day of the year. I’m trying to figure out if that is just the way my luck is running or if it is cosmic humor… I think it probably will end up being a foreshadowing of the year to come.

I’m scared. The doctor warned me that I’m liable to have a less than fantastic weekend. I really don’t want to get sick in an attempt to get well.

5 am this morning, I was up before the sun with DS on a walk (more like a mosey… but this morning, mosey was just what I needed). We have a ‘typical’ walk that we go on when we walk together (we end up doing about 3 miles… we end up at a cement picnic table and bench usually chatting). This morning we were going to pick up a dozen donuts at the new donut store (kind of defeats the purpose of the walk… ). Who knew donut stores take off for new years morning. This store usually opens at 5… we were there at the store at about 6… no dice… sigh. so we mosied a bit further past the ball park until it got cold enough walking in just a hoody and not generating any body heat that we opted to go home. Called home to get a ride (promply took a detour to get donuts at the grocery store). It was 36 degrees… not really hoody weather.

I’ve been forcing the smooshy swollen achey out of my knuckles. Hot bath helped with that… but it is tight and sore still.

Now… I’m working on trying to get computers fixed while I still feel like getting the stuff done… Not going great. Probably not going to be in the mood to deal with Dell support tomorrow… but then, I’m usually not in the mood to be talked down to by some guy…

Staying Motivated When Life is… well… life…

How does everyone else stay motivated to workout?

When I am at work and the gym is right downstairs and stress is an ever present… THEN it is easy to stay motivated… getting out of the office, working myself into a sweat and then going for a nice cool shower is a heavenly break and way more productive than going out to lunch or working through lunch (which happens at least one day a week plus my work from home day).

But some times (especially when I’m deep in the heart of the second pager week in a row and especially when I’m up several nights running because of the way that the database is behaving) it is so hard to get my butt up and going.

Now, I have to be able to make my Valentines Day deadline for 13.1…

But more important, I feel so much better now that I’m down 30 pounds (and holding) and I can breathe and I am feeling more and more human most of the time.

I look at my kids… and my sibling’s kids… and I think maybe I can be an example to them… if I can do this anyone can if they want it badly enough.  It takes wanting it badly enough, though… and doing it because YOU want to not because someone else wants you to or tries to guilt you into it… because you have decided that you are worth the effort.

And you are worth the effort.  If not you, then who!?!

You really can’t be everything that everyone else wants you to be if you aren’t everything you can be to yourself.

Yeah, I know, I have always rolled my eyes at that one, too.  I have to do X for DS.  I have to do Y for DD.  I have to do W, Z and Q for DH.  Work comes first because if I don’t do whatever it takes for whatever the current most important project I will “Be responsible for costing <the company> a lot of money” (that really is hooey for what it’s worth).  House work, laundry, dinner, work, the other work, yard work… hell, with all of that and everything else, I’m lucky if I have the time to take a shower let alone take time for me (to read a book or take a walk or even just sit in the back yard).

It really is amazing, though, when you realize that your cholesterol is way too high and your not breathing right and that you hurt all of the time and that no matter how many hours there are in a day, the next day really will come with just as many and the one after that… and the one after that… and other people will work to consume all of them for you if you let them.  Say NO to just one thing… folding that load of laundry… doing just one extra thing for the project that really isn’t your job…

Take just five minutes to walk to the end of the block and back.

Walk it for a week, every day.

FEEL the difference after a week or after two.

Feel how you notice the house at the end of the block that won house of the month and see how the weeds are really taking over their yard because they aren’t keeping up with pulling the weeds or trimming around the little fence any more.  Notice the dragon fly that frequents the fence  next door.  Smell the heavenly smell of the people across the street when they start the grill every Friday for dinner.

Soon you will start to really look forward to those five or ten minutes alone time and you will start to feel better and you will come back to the “regular” part of life with a new outlook and things will seem to get done quicker than before.

After the first distance starts to become more effortless, add a little more distance (an extra house or two, the end of the next block).  Notice the new things that you pass.  Take an audio book with you as background, or listen to music that lifts your heart… or that calms your mind.  Eventually you will start to look for music that helps you keep time to your walk or that helps you to keep up with keeping up.

After a few weeks, you may start to notice that you are feeling better, that you’ve lost a couple pounds or that your pants (or shirt…or whatever) fit a little more loosely.

Once you get there, you are half the way.

I don’t suggest that you actually go out and sign up for a marathon (or even a half marathon).  That’s what I just did, but I set that as a goal when Trunk Monkey and my now ex-pet developer (She found a better job) guilt-ed me into going to the gym with them because no one ever went to the gym with them and then they quit going all together… they both said (eyes rolled) that they got me going and I was the only one that was still going and they would see me finishing a marathon one of these days… when they said that, then quit going, I figured I may as well set that as a goal and when I started to loose weight it started to become a goal that started to seem real.

start small

keep at it

and remember

if not you, then who…

On Being a Good Example

Today, I feel pretty good (even though I don’t figure many people, at this point will ever know or care that I do… sigh).

This morning, my mom called me from her walk… she sets her goals every day that she and my sister walk.  They walk to the next bench and sit and talk… then head for the next bench.  I’m so glad they are walking and that they have each other to walk with.  Sometimes, she said, they make it further than the next bench.  Ultimate goal is a complete circuit from car to car around the park and back again.

Tonight, I found out that the advice I gave someone else is helping her, too.

It is good to be able to be a help.

Today, I did 30 solid min on the incline treadmill 18% incline max, 4.2 miles per hour (I am determined to be able to hold a 15 min mile for at least 8 miles by October when I do the half marathon).  Then I stretched and my stress headache went (mostly) away!  Woohoo!!!.

Last night I had a tension headache that wouldn’t quit… the price of being a type a with a project that has to come in on time…

Mornings are getting horribly warm and humid, but I need to keep up with my workouts in the morning becuase it makes the days much better… less stressful.

Loosing Inches

Well, my thighs are now 23.5 inches and my waist is 31.5 inches.

I may not be seeing big weight gain, but I’m still slowly loosing inches.

Today, at the gym, I used the machine that changes incline but will maintain a constant speed.  I managed to do the entire 30 minutes at 4 miles per hour at a maximum of 15% incline.  354 calories down, heart rate up to 176.  Before I started, I took my heart rate and it was 65.  That is the best I think it has ever been.

I’m almost looking forward to getting my blood work done in July.  I actually want to see what my cholesterol numbers are.  I would love to lower my weight to 145 or so… heck, I would just like to get past the plateau that I’m on… but I have to realize that I can get there.

Been looking at web sites on Tai Chi, too.  I think less stress sounds really nice.  I think I would feel like a big giant dork trying to learn the moves, but hey… I didn’t think I would ever be able to maintain a 4 mile per hour pace and I am upping my time and my speed over the next week or so.