Tuesday, September 25, 2012

Just adding a few more references to read later. http://www.everydayhealth.com/arthritis/rheumatoid-arthritis-and-marriage.aspx http://www.the-rheumatologist.org/details/article/865703/Couples_Coping_with_Chronic_Pain.html http://www.webmd.com/rheumatoid-arthritis/features/coping-with-fatigue-weakness-and-rheumatoid-arthritis

Friday, September 21, 2012

Rheumatoid arthritis.. And me.

Some days, I feel that my life is ruled by my arthritis. For those of you who haven't read my blog until recently, I was diagnosed in 2011 with rheumatoid arthritis (RA). It began while I was training for my 2nd half ironman and just chalked my exhaustion, pain, and stiffness from training so much... And ignored it. Then, one day, I woke up feeling as though I had jammed my middle finger as it was stiff, painful, and stuck in a half-upright position. I went and got X-rays and given a splint. My joints got more and more swollen and painful, and my exhaustion more severe... So ultimately ended up seeing my primary care doctor who ran a ton of tests... And the conclusion: rheumatoid arthritis.

My joints, especially in my elbows and fingers, were painful and swollen, and I basically felt like I had the flu all the time. My rheumatologist prescribed some crazy meds and I was nauseous and extremely tired all the time. To top that off, the meds were not fixing the problem. My feet were so swollen, my shoes hardly fit and waking was a challenge. I took a leave of absence from work to try and find other solutions... Acupuncture, massage, physical therapy, dramatic diet changes, less working out, more working out, lots of rest, heating pads and patches, pain meds... But very little changed for the better... Except for the dietary changes - those made a decent improvement.

I started to feel a bit better towards the end of 2011 and Jax and I trained for an ultra marathon together... Which I then completed in April 2012.

Flash forward to the present... I struggle with RA daily. The exhaustion, the "flu like" symptoms... The sore and stiff joints... I try not to complain much but the reality is, I really just don't feel well most of the time. I hate feeling "weak" and that I need help with certain things... That I can't do all the things I used to without pain or exhaustion. I hate asking for help and do not like feeling defeated by my own body. It feels like such a betrayal - my body attacks itself. Some days, getting out of bed is a challenge and it really doesn't help that I have developed insomnia as well. Take the exhaustion from the RA plus not getting sleep from insomnia, and it makes me a cranky and short tempered and such a pain in the ass for those around me.

I want to feel good again. I want to be able to clap without wanting to cry, sleep without waking up stiff, have days when I am not so tired that sometimes, logic escapes me and I'm irrational. I often times wish that most people do not have much of an idea how severely this ailment affects me. I want to educate the ones closest to me about HOW this has an impact on me, WHY I'm sometimes totally irrationally tired to the point of being completely frustrating to deal with. And I need to take better care of myself... Sleeping more, eating even better... I need to try and adopt new methods of handling myself when feeling particularly shitty.

In any case, here are some links... So that you, my friends and loved ones, can better understand me.






Anyway, that's enough blogging from me today...

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New haircut

I needed a change. I mean, I need many changes to occur but the quickest and easiest of them all is: my hair. So, I did...

Here's the result:

You can hardly tell from the photos but it is red in color and the back is extremely short. I feel pretty awesome about it. Just the right kind of change I needed.

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Best friends...

For the last 7 years, I've had an amazing best friend, Jax. We've been through so many ups and downs together, have shared so many laughs/tears and have grown as individuals together... She is the first person who hears my triumphs, my challenges, my bad days, my complaints, my celebrations... She has been there for me through the hard and the easy and she's always there to kick me in the ass or give me a shoulder to cry on.

I really don't think that words alone can express how grateful I am for her presence in my life. I'm going through some major changes right now and she has been my anchor.

Thanks, Jax, for all you've done, do, and will do for me. I love you, you are proof that you CAN choose your family.

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Burning man

Burning man was a reality check for me. A reminder that I'm not invincible. A reminder that I do suffer from a sometimes debilitating disease. And I didn't learn this lesson the easy way, either.

We arrived for "early entry" on Friday, after having spent the previous day in a car with minimal stretch breaks (mistake #1). We also arrived on the playa with mild food poisoning courtesy of the Sands Hotel in Reno. (Mistake #2). We then proceeded to work our asses off all weekend to set up camp. I carried lots of heavy stuff and busted my butt trying to be helpful (Mistake #3)

So, by the time the Burn week actually began, I was exhausted and sore. I didn't quite realize the magnitude of my exhaustion until
Thursday but I was definitely tired. (lesson learned: ask for help, do less physical labor, manage my pain better with meds). I thought I was pacing myself enough with sleep at night and daytime naps, but I was still exhausted. By Thursday, I was pretty exhausted and having a rough time. By Saturday, I was irrationally tired. Nothing sounded good, food (as it had been all week) and water were both hurting my stomach... I was snapping at Nathaniel, just plain no fun to be with. (lesson learned: when at the burn with a partner, plan separate nights/days out and if I'm tired at night, I suck it up and go to bed solo to avoid conflict!!!)

It was, overall, a good time. However, I learned some very hard lessons and am still trying to smooth the edges... Recourse for my actions. I've definitely had to do a lot of thinking, introspection, etc and had many conversations regarding how this could have been avoided and ways to prevent it from ever happening again.

I oftentimes forget how strong the symptoms of RA can get... And would rather ignore that I have it. Guess that's just not the right thing to do.

The ride there was fun....

The scenery was beautiful....

Finally "home"

One of our two main camp structures...

Our home for 11 days...


First day on the playa...

We got very dusty...

The temple was so amazingly beautiful...

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The ebb and flow

Life is such a funny mixed bag of emotions. Sometimes, it's hard to even see things for what they really are because emotions and/or circumstance over shadow the true core of the emotion, thought, task or situation at hand. When this happens, I believe that it is time for serious self reflection, life reflection and self improvement.

I see my life as a work in progress, an unfinished painting, an incomplete concerto, the novel that continues to go through edits and have chapters added... It will never be "quite right" but clearly it is my duty to ensure that I make it as complete and as good as possible. Sometimes I might paint the wrong stroke, select the wrong note, choose the wrong words... But the nice thing about life is that you can always take action to improve upon the things that are just a little off.

Do we always realize when we are going astray? Are humans flawless? Absolutely not. Sometimes it takes the gentle (or in some cases harsh) eyes of the people around us to really put things into perspective, something which is never easy. How we accept this information and what we do with it can make all the difference in the world. If we take the information and ignore it, brushing it off as silly, we cannot grow. Stagnation in growth is failure to thrive. Failure to thrive is certain death...and who wants that? Shouldn't we strive for continuous improvement and personal growth? Shouldn't our quest be to become the best people we can be? Change is hard, change is damn hard... But I refuse to sit still in life accepting mediocrity for myself.

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Wednesday, September 12, 2012

Good morning!

Figured I need to blog more... So here's a continuing attempt at achieving this...

The kiddos on their way to school!!

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Tuesday, September 11, 2012

A photo dump update

We moved to Coronado! So far loving the ability to walk EVERYWHERE. Next step - getting the kids bike ready!

Just a few from our journey thus far... I've drafted several updates to post as soon as I have time...

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