Leave Me Alone, This Is My Life

In the game of Life we are faced with so many rules. Rules of the road, rules of the state, rules of conduct, rules of dress codes, rules rules rules. Games have rules, jobs have rules, even relationships have unspoken, unwritten rules. Every aspect of our lives are ruled by well, rules!  It doesn't matter who we are, how much we make, what we do, where we live, there are rules. Whether they be written, unwritten, spoken, unspoken or even known. Our lives are dictated by rules.

A depressing thought if you stop right there. But the greatest thing about being human is that we are given free will. We have the personal choice to follow whatever rules we want to follow. We don't HAVE to follow all of these rules, we can set our own rules, we can choose to follow whatever rules we want. Certain rules we should follow, state and federal laws of course, but again, we have the choice whether we follow them or not. If we do not we have to face the consequences of such a choice.

Where am I going with all of this? Well living with JRA for as long as I have I've always had to follow a certain set of rules that came with the disease. These rules were established by many people, my parents, my doctors, my therapists, my teachers. When I was too little to make my own medical decisions it was up to my parents and doctors to establish the 'rules' of my life living with JRA. They decided what medications I would take, what therapy I would go through and what splints, braces, and surgeries I would take on all in the name of treating, battling this disease that so little was known about.  Some of the rules were that I would not participate in gym class in school.  They believed that it would be too painful and difficult for me to participate so to prevent further damage to my joints that were already hot and red and swollen I sat out of all my gym classes.  When I reached 8th grade I wasn't allowed to go on the class field trip to Washington D.C. because the staff did not want to be responsible for making sure I was able to keep up with the group, administering my medications, and honestly I don't think they wanted the liability of having the 'crippled' kid on the trip. I had to follow their rules. I had to live my life according to what they believed was best for me, whether I agreed with it or not.

Then I turned 18. All the decisions then became MY decisions. Every medical decision was mine to make and mine to live with. If I didn't like them there was no one else to blame but myself. I couldn't argue "it's not fair!" and stomp off hating my doctor, my parents, or my teachers because the decisions, the new rules, were all my own and I had to learn to live with the consequences. If I chose not to take my medicines I had to deal with the resulting pain, stiffness, and swelling. I loved it. I loved having the 'power' to decide how I was now going to live my life with Arthur. When I turned 18 I no longer wanted to be considered a 'kid' with a 'kid' disease, so I referred to it as "Arthur". Somehow that seemed a little more grown up but not entirely old person disease sounding as "Arthritis" sounded. What can I say, it's all in how you say it when you're 18 and stretching your decision making skills.

There were plenty of times I wished I had someone who would just TELL me what decision to make. Someone who could just set the rules for me because at times it just became so overwhelming trying to figure out what rules I should follow. I was already trying to figure out the rules of dating and dating as a young woman with a disease most other 18 year old boys don't come across. Then I was trying to figure out the rules of attending college while also dealing with Arthur. Pulling all nighters to write a paper or cram for an exam only to find myself frozen into a claw like hand position the next morning making taking the exam a form of slow torture with every tiny bubble I had to fill in. Spending my weekends going to clubs and dancing only to slowly turtle walk to class on Monday because my knees were hating me for seeing how low I could go. I was learning my rules and boy was I hating them.

Then came the time I had to make a real decision about my health. For years I had been on methotrexate, I was part of the original blind study that brought methotrexate into the pharmaceutical marketplace. This all happened while my parents were still responsible for making all my medical decisions. I didn't know much about the medicine except that it let me move pretty well and I was no longer exhausted while in school. I felt almost...normal.  I remember also at one point they needed to do a test on my liver. I was in 4th or 5th grade and I didn't have the benefit of watching "ER" or "Grey's Anatomy" to keep my medical lingo up to date. There I was, a girl sitting on an uncomfortable exam table in the rheumatologist office. Wearing one of those flimsy stupid clown covered gowns swinging my legs while listening to the rheumy explain to my parents that they needed to do an autopsy of my liver. Wait. Autopsy? What the heck are they talking about? Isn't an autopsy done when you are dead?? I was filled with terror, my rheumy and my parents were going to kill me to look at my liver. Holy. Crap. Now yes, I know now that I should have spoken up and asked what they were talking about. It certainly would have saved me a few weeks of terror filled nights wondering how they were going to 'do me in'. The day came for the 'autopsy' and I had left at home in a spiral notebook my final will and testament asking that I just be buried with Teddy, my teddy bear, and that my sister could not have any of my things. During the 'autopsy' I wasn't put 'fully' under, just asleep enough that I wouldn't realize that they were sticking a very long evil looking needle into my liver to snip tiny pieces of the organ to be examined under a microscope. Soooooo while being in this 'twilight' sleep I was showing off my graphic vocabulary knowledge by swearing at the surgeon throughout the entire procedure. I was extremely pissed off that they were going to 'off' me before I even got to learn how to drive.  Imagine my surprise when I woke up in recovery, lying on my right side fully alive. Imagine my embarrassment when the surgeon came in and in a very low gravely and slightly irritated voice informed my parents that I had a very 'colorful vocabulary'...

Ok that was a long side road but it brings me to this, the methotrexate was working but while it was working to control my Arthur it was also damaging my liver. In 5th grade instead of having healthy red liver cells mine were more pinkish in color. I was 10 and had liver damage. Nothing too serious but always something to think about as I grew older and grew closer to the wonderful age of college drinking.  Surreeee I attended a college that was a 'dry campus'...but since when did the 'rules' of the campus apply to me? Or my roommate? I had to make the decision then though, do I follow the rules of methotrexate and abstain from drinking alcohol or do I decide to follow my own rule, do some good ol' fashioned ill advised drinking like all the other 'normal' kids were doing and face the consequences of possibly speeding up my liver damage...I chose to live what I felt was what I wanted. I wanted to have the college experience and in my mind that included drinking. It was my choice and I lived with it, hangovers and poor choices be damned.

This first foray into making a medication decision opened up a whole new way of looking at life and how I wanted to live it. Did I want to live according to the rules of my medications or did I want to live the life I felt was what I was meant to do? If I didn't take my medication I couldn't move, but if I lived my life to include drinking, being out in the sun it could increase my chances of organ damage, cancers, even death. I realized that yes, I wanted to take my meds so I could feel as normal as I could but I also wanted to know that at the end of my life I had LIVED. I had sucked the very marrow of life out of its bones and I could die knowing I didn't let Arthur set my rules. Yeah, he'd have a say in it but he wouldn't dictate it.

In the more recent years watch dog groups have become prevalent and have made it their mission to cry out against the side effects of some of the more affective arthritis medications out there. This really pissed me off. As a result of their outcries one medication was completely removed from the market. What made me so mad was that these people didn't even HAVE arthritis. They never had to make the decision to take the drug or not take the drug. They assumed that those of us who chose to take it must not have heard about the side effects, the possible heart, liver, and kidney damage. The possible increased risk of cancers. If they had bothered to ask us we would have told them, yeah. We know. We have to choose. No one ever said it was an easy choice. But we had to choose, live life in pain, unable to move because our joints are frozen from damage and inflammation, be confined to a wheelchair or worse, a bed. OR we could take this medication, have it work, and be able to go for a walk and see the world outside our home or the hospital. Have the ability to take a vacation and stick our feet in the sand without the agonizing cracking and popping of our toe joints while doing so. Either way we chose, it is OUR choice to make, not theirs.  We face this choice each and every day and we strike the balance between the good and the bad. Is it worth taking this medication despite the hair loss, nauseous, fatigue?

Today I saw my rheumatologist for my 3 month visit. At our last visit I had just started taking Humira, a biological medication that is injected every other week. I know Humira can increase my chances of certain cancers. I knew all the sordid details of the medicine but at this point I was having so much stiffness and pain I knew I needed to do something. I made the choice. I was going to live with the consequences. In those 3 months I kept coming down with MRSA infections.  Every time I injected I would spend the next two days feeling down to the bone exhausted. After those two days yes I felt good, obviously I was running, I had lots of energy and could live my life the way I wanted. But after 3 massively painful MRSA infections that were on my face that would wipe me out for at least a week. Banned to the couch and trying to hide my face when taking my kids out in public I came to the realization that it just wasn't worth it. Taking this medicine the good was not outweighing the bad. I decided I wanted to ask my rheumy today about either backing off entirely from the biologics or switching to a different one.

After getting into the exam room (hallelujah as an adult I no longer have to wear those STUPID flimsy clown gowns!) I filled out my "what is wrong with you today" form for the doctor. Using the lovely number chart I circled that my pain today was about a 6, my morning stiffness was only 5 minutes long however I found that in the afternoon my hands, fingers, and knees were extremely stiff and weak. Just that morning I had picked up a carton of eggs and promptly dropped it onto the garage floor because my hands lost all strength. I circled that I was tired, had headaches, dry eyes, and skin infections. Yep, I was glamorous on paper.

My rheumy came in and asked how I was doing, I answered with a less than enthusiastic "ok" and we got down to it. I told her about the repeated MRSA infections, the nausea and down to the bone marrow exhaustion and that I felt that it just was not worth taking the Humira to feel this bad and to be perfectly vain, look this bad whenever I would get an infection. As much as Hollywood and TV land has a current obsession with zombies I do not wish to look like one of the living dead on a daily basis with oozing sores on my face. Seriously it was just not a look I wanted to continue sporting. My rheumy got quiet and clicked away on her little laptop. "Well, ok, but your labs look fantastic. Are you sure you want to stop taking Humira? I mean, your labs really are great!" Um, I'm happy my LABS look great but I DO NOT. Hello, oozing facial sores. Not sexy. Black under eye bags and blank facial expressions, not SEXY.  In the end the rheumy set my rules. She decided that we are going to continue taking Humira and I should just go see an Infectious Disease doctor about the MRSA. In her mind it was no big deal to live with constant massive infections as long as the lab work looked good. In my mind it is a big deal to feel so ugly and in so much pain from these infections that I hide out in my home. So why did I let her set my rules of living my life with Arthur? As I said earlier, sometimes I just want someone else to make the decisions. I'm tired. I'm frustrated and I want a break.

Tonight I sit here wondering, whose rules am I going to live by? Certainly not Arthur's. I have a 10k on November 6th that I plan on running. I'm registered, I'm going. Do I live by my rheumy's rules and live with massive infections because my lab work is pretty? Or do I need to make my own rules up again? How do I strike the balance of treating Arthur while also continuing to suck the marrow out of the bones of life? I don't know tonight. I may not know tomorrow either. I know I will figure it out because it's my life and I will decide. I will decide how I will live.  I will decide what rules I will follow. I will decide what consequences I am willing to accept. No one else will.

There was Thunderdome...and then there was...the DREADMILL...

Ok Ok I know, it's been awhile since I last posted...A long while. Like...almost 2 months long while. What can I say, boys went on summer vacation which meant Mommy had to get to work! It takes a great deal of concentration and vigilance to keep 3 boys under the age of 9 alive for 8 weeks without the wonderful distraction of 6 hours of classroom work each week. A LOT OF VIGILANCE! I'm pleased to say that we are now in our final week of summer break and I have not heard even once "I'm bored, there's nothing to do!" I have heard "Mommy my brother is annoying me!" or "Mommy he won't stop looooking at me!" and the best "Mommy I think we broke the toilet"...Fun times, special memories.

Throughout the summer I continued to follow the 5k training program I had downloaded off the internet, though it was done in fits and starts. One week I would be right on track, getting in my 3 run days and at least 2 cross training days. Then the next week ART would rear up his head and either I would have a massive infection that took me into the sidelines or swelling of my right knee which made running sound like a Rice Krispies commercial with snapping, crackling and popping over a loud speaker.  I knew it was bad when I would run past a neighbor out watering his front cactus who would shoot me a mildly disturbed glance and ask if I was ok.  Apparently he wasn't aware of the human knees' capability of making such a variety of tones and crescendos, thanks ART! So as June wore on, the desert heat rose, and my knee and body rebelled I started getting depressed. As I was running I would think, there is no way I can do a half. Look at how slow I am. I'm not completing more than a mile in the 20 minutes the training plan allocates for the daily run. I'm sweating so much I think I could easily bring the state of AZ out of the current drought. What have I done? What have I committed to? Despite these Debbie Downer thoughts I kept going, kept trying though I honestly didn't know why.

July arrived and ho boy so did the summer heat. I've dealt with an AZ summer in the past, I lived out here 10 years ago and knew that the summers got a bit, well, oven like. Like when you are making fish sticks, you have to heat the oven to 400 degrees and when you first open the oven door to put the fish in the oven you are hit with this burst of intense heat that makes your eyeballs seize up and shrink just a bit in the eye sockets. You certainly shove the pan in the oven quick to close that door. You don't want to stand right in front of that oven door much less live inside the oven! But here it was, summer in the desert, no avoiding it.  I figured out that in order to do my daily run in some form of comfort I would have to get up at about 4am.  I am not a morning person. No way, no how. Unless I could run in slippers, pjs and a large mug of coffee, it was not going to happen. This pushed me to face another fear.  Enter: the treadmill.

Sure I've WALKED on the treadmill, but I've never run. Even when walking I would have a death grip on the hand rails convinced that if I took my hands off I would be thrown backwards off the treadmill with the grace of a hippo belly flopping into her mud pit.  Art has done a lot of things to me, broken my hips, eaten my right ankle, puffed my knees up like marshmallows over a campfire, but it's also managed to completely mess up my sense of balance. I walk at times with a significant limp on my right side which makes my entire body pitch to the right. I've fallen over while standing still. I've pitched backwards for no apparent reason, both of which have happened in the shower which is even scarier. So now I was thinking of running on a contraption which could potentially seriously injure myself and my ego.

The first day I tried the treadmill it was a balmy 115 degrees outside and there was just no good time in the day that I could go for my usual run around our housing development.  With great trepidation I drove to our YMCA and strolled nonchalantly into the cardio room. Yeah I could do this, the treadmill can't smell my fear. Just play it cool. With heart racing, nerves strung tight I straddled the belt of the treadmill and started pushing the buttons. I picked my 'view' the oh so glorious highschool track option, entered my weight (all the while wondering if the gal next to me was peeking and would call me out as a liar) and then it wanted to know what speed. Uhm...I don't know. I don't actually know how fast I go. I figured I would just slowly increase my rate until I found the speed I could comfortably run at.

Slowly inching up I found my pace but kept my hands tightly gripping the rails. I was terrified. I spent 20 minutes digging my nails into the hard plastic of those rails. I'm sure that to this day people using that machine will be wondering how a set of 10 half cresent moon indentions were made so deeply into that hard plastic...But I did it! I ran on the treadmill! Yay me!  I still preferred running on the asphalt. However this preference did not include running on asphalt that was radiating heat equal to the heat produced by my oven at 400 degrees. I am not a fish stick. I don't take well to being baked.

The second time I went on the dreaded mill I decided I was being silly. I mean look at all of the other people who use a treadmill. I've never seen reports of someone being killed by one. Heck there are YouTube videos filled with guys doing all sorts of interesting dance techniques and choreographed videos on the machine. What the heck, I've seen people using them to walk their dogs so why can't I let go and run??

Letting go. That's what I had to do. Physically and mentally. Art had filled my head with so many doubts and anxieties I had to learn to let go of them in order to move forward. I knew I couldn't let go of all of them (my head is very full of doubts and anxieties...honestly I think somewhere I have a rented storage space full of additional issues thanks to living with Art for so long) but I could at least learn to let go of this one. This fear of being flung off and falling on my face, on the treadmill and on my quest to do a half marathon.  I pushed the start button, I started to fall into my pace and I let go. One finger at a time but I did it. I let go. I didn't fall down, I didn't end up being shot putted into the back of the cardio room. I ran.

I can't say that this event has led to a love affair of running on a treadmill. But it excited me that I could DO it. Something else in my head that I thought I could never do, like running. But I did it. And I did it on my own. There was noone there telling me to let go, noone pulling my fingers up while keeping their hand on my back. There was just me and my desire to prove to MYSELF that YES I can do this. I CAN. Art cannot have this fear over me anymore. Like Art stripped my joints and immune system I've stripped at least this one fear away from him. I took back another little piece of me.

Now we are entering August and it's still flippin' hot out here. I'm looking forward to the end of September when I'm sure I'll be able to return to my evening runs around the golf course in our development. Listening to the prairie dogs chirp as they from hole to hole, watching the sun glide beyond the mountains in the distance and smell the sweetness of the cooling desert sands around us. Until then at least I can get on that treadmill, watch some mindless t.v. (why oh why do ALL the t.v.s have to have FOX news on them???) and just let go.

Describe Your Pain

Last week I had a deep and committed relationship with our couch. I was on it every day, in nearly the fetal position, with my trusty lap top within fingers reach and a Criminal Minds marathon on the t.v.  It takes a lot for me to be knocked down for the count. I've dealt with fevers, flu, double pneumonia, and full on arthritic flares on major joints and still gotten the kids to school, made meals, and had all the laundry washed and folded by nighttime. Not this time!

It started on Friday when I scratched what I thought was a rare mosquito bite on my back. Saturday that bite had grown to the size of a half dollar, literally if you took a dollar and cut it in half it was that size. Sunday the swelling had started from under my right breast and had spread to the spine all in the size of one of those dried sausages you see in the pictures of a butcher.  I had a spare tire and it hurt. Monday brought me to the doctor's office.  After waiting until 4:30 for my 3:30 appointment...it was diagnosed that either I had MRSA, Staph infection, or...he really wasn't sure. But he prescribed an antibiotic and said that if it didn't start draining on its own by Thursday I would have to come back for him to lance it and drain it. That also hurts. I've had it done, it sucks.

Now all of my life whenever I had a doctor appointment the appointment would start the very same way each and every time: what hurts, is it swollen, and how would you rate your pain?  How would I rate my pain? As a kid I had a hard time figuring this one out. Rate my pain? Like how? Like I would rate a movie? Two thumbs up? Two thumbs down? What about those weird days where I didn't really hurt but I couldn't move my joints, would that be a one thumb up one thumb down deal? As I got a little older this fancy schmancy new rating system came out that all the docs seemed to go gaga over. It was a scale starting a 0 and ending at the number 10.  So 0 being no pain and 10 being the worst pain I'd ever felt I would have to make my little crayola line over the number closely relating to the level of pain I was feeling.  Well how did I know what was the worst pain I'd ever felt? I was only 8, I hoped I had a lot more life to live, which meant childbirth and I had heard that was excruciating. Plus I'd never broken a bone or anything so how did I know if maybe one day I would break a bone and THAT would trump the current pain I was experiencing in my right ankle? I struggled with the pain rating, I really did. While most 8 year old girls were anxious over having the right clothes for their Barbie, I worried that I was not giving an accurate pain rating for my doctors. Then they brought out the smiley face rating scale. That thing really ticked me off. There is no smiley face on this earth that can accurately portray what I feel inside. Seriously hated the smiley faces.

I finally found a way around those annoying pain ratings. Instead of making a mark on a line, I started describing my pain to the doctors in the most vivacious words I could come up with. Instead of just, "it hurts" I would have an entire diatribe of how the pain would vibrate under my skin, starting from the marrow of the joint itself. That each wave would bring a cresting of heat and pressure with it, crushing the bone and skin until it felt as if my ankle would become just bits of sand, giving away underneath me. I read a lot as a kid and I had quite the vivid imagination along with quite the substantial vocabulary to choose from.  I would describe feeling, if it were a sharp pain, that someone was using an ice pick and hammer to bash away at my finger joints every time I grasped a pencil or crayon. A dull thudding pain was described as the slow beat of an African drum heard off in the distance. Where you are never sure where it came from but it matches your heart beat pound for pound.

Back to my current pain of last week. After some input from a message board I frequent, I diagnosed myself with Cellulitis, inflammation of the skin cells. Resulting in swelling, pain, fever, joint pain, and a gross collection of pus and fluids in the area of a blister.  By Tuesday this 'bite' had grown into a spare tire of inflammation, a collection of hardened pus and a blister that would.not.break. The pain was insanity.  The slightest shift in air pressure around my skin caused me to curl up and close my eyes praying for stillness to return. When I saw my kids come running at me for a hug or kiss goodnight I would scream out for them to stay back and not touch me in a panic that they would accidentally hit my sore and I would implode into a million pieces. The pain wasn't just in that one spot, I felt it in each and every joint in my body, that thudding aching stiffness.  It was if someone had poured molten lava that was just starting to solidify in each joint causing pressure, heat and stiffness. Hot moist packs wouldn't work, a heating pad didn't work, I was beginning to doubt that even the antibiotics were working their magic. Thursday came and I knew I HAD to get my one son to his doctor appointment that morning. It had been cancelled two weeks prior and it was a very important visit. So despite cringing and nearly vomiting while getting dressed myself I got the 3 boys dressed, fed, and in the van heading towards our friend's house. I dropped off the 2 boys and took the 1 to the office. Even the doctor noticed the pale look on my face and the way I was walking. I told him it was mind over matter this morning and lets just focus on what I came for. On our way back to picking up the other 2 I began to think it was Emergency Room time. I was having hot and cold spells, the pain was so intense I was crying, it was time to admit it: I was in over my head.  We get home and my husband is home, thankfully early! He took the boys and I figured that first I would lie down on the bed and then once I got my breath back we would head to the ER.....

Five hours later I woke up.

I went into the bathroom and almost wept with joy, the stupid blister was finally draining. Not a whole lot, but enough to make it so I wouldn't need to go to the ER or to the doctor to have it lanced. Oh it hurt like a son of a *itch but it was draining. I was never so happy to see pus. In the days that have followed my spare tire of swelling has gone down to the size of a tube sock. The pain is gone and it still weeps a bit as the rest of excess fluid works its way out. I've had cellulitis before but never ever like this.  It was a reminder that as much as I would like to think I'm in control, my body has the last say in the matter.

It also made me realize that while pain is universal, we all feel pain, pain is also highly individualized. What hurts me, may not hurt someone else to the same degree. So when a doctor asks us to rate our pain and I check off a 5 and they can't figure out why I'm even in the ER then if it's not a 10, it's because my tolerance for pain is way higher than someone elses. And somewhere out there is someone who may have been able to take on my cellulitis last week and still been able to get up, get dressed, and lived their life.  Instead of me, who became addicted to Mahjong and left a body imprint on our couch.

After a week off  I am jumping back into my training. I was very angry when I first realized that training was NOT in the cards for me last week (the tip off was when trying to get dressed made me dry heave). I was pissed off that after only 1 week of in earnest training my body was already crashing on me. Oh I was pissed and I had a lot of not nice things to say to myself. But it's a week later, I feel better so it's game back on. I have to realize that while there will be interruptions in my training that's no reason to stop altogether. I want this challenge, I need to face this challenge. I will and I can.

Oh and next time I got to the doctor and need to rate my pain, I'm bringing this:
http://hyperboleandahalf.blogspot.com/search/label/pain%20faces

The Dragon Lady

Growing up with Art I had two forms of torture that I had to face both at school and at home. The first form was called Physical Therapy (PT) or as I would call it in my mind, Pure Torture. The second form was Occupational Therapy (OT) which I never came up with a fun little nickname for but despised as much as I did PT.

In school I had PT twice a week. The Dragon Lady would come to my classroom and interrupt my schedule of being as quiet and unnoticeable as possible in the class as to avoid being teased on the playground. I dreaded that time because the sheer act of getting up in front of everyone to walk out to meet the dragon lady meant that all 25 pairs of eyes were on me from the time I stood up to the time I quickly slipped through the classroom door out into the hall. And those same 25 pairs of eyes would be on me when I came back, all but guaranteeing I would be teased at some point during afternoon recess. Oh how I hated those biweekly visits from the dragon lady. She wasn't mean, really she was pretty nice to me considering I would barely speak to her, I tended to glare at her, and I would perform my exercises with the same enthusiasm saved for facing ones death. I hated PT. I hated the idea behind it because honestly, it didn't feel good so how could it BE good? They all kept telling me and my parents that movement was GOOD, that it would be HELPFUL. Funny, but the more I moved, the more my joints hurt. The hotter they got, the redder they got and the more swollen they got. I hated PT and I hated that it felt like no one was listening to me. So I stopped talking. I just shut up, got up, and went into our little conference room and did what ever form of torture the dragon lady had dreamt up in what I imagined was her evil lair, filled with exercise bands, therapy balls, and various Velcro ankle weights. Ooooo how I hated those heavy, hard clunky ankle weights.

OT I don't remember as vividly. I don't think I had it very often and since when I did have it it tended to focus on doing art work, playing with putty or coloring. Things that I thoroughly enjoyed. Even the act of having to get up and GO to OT from class didn't bother me because I knew that while my classmates were toiling in class working on vocabulary words or diagramming boring sentences, I was getting to be creative and play. Ha! In your face third grade!

Growing up, PT and OT were always on my mind. Dreading that physical movement each and every day. Even on the weekends I wouldn't get a break from it. That evil dragon PT lady, well her clutches spread into my parents! She sent home the poison apple in the form of MORE exercises for me to do at home. At home! Even in the peaceful sanctity of my own home I would be forced to do the hated exercises, all while being told it was GOOD for me. That it would HELP me feel better. Whatever! Not only did it hurt sometimes, they were BORING! I mean really for any 8 year old how exciting is it to lie on your belly and have to lift your arms and legs up like you are Superman? I'm 8, I'm not an idiot, I know I am not Superman. I will not fly, I will not leap tall buildings in a single bound. Heck there were days I couldn't manage the two steps from my bedroom to the bathroom. So don't sell me on exercises with "Ooo imagine your Superman!" Trust me, in my mind I was saying screw you. I'm sure if they looked close enough into my eyes they probably could've read that thought as well.

This morning I woke up and the first thought was, I wonder how my run today is going to feel? When can I fit it in our schedule today? It hit me, wait a minute, I'm looking FORWARD to this! It's physical activity and I can't wait to do it? Wow that's weird. My day was going to be busy, dropping boys at school, stopping at the retirement villa to vacuum the pool, grocery shopping, etc. Midget was still sniffly so I couldn't take him to the Y kids center so I could run. Hmm. Then after lunch I had a meeting at the boys school followed by escorting the oldest child to an audition. Ah the rock n roll lifestyle of a Mom! Around lunchtime I was back to thinking about my run when it occurred to me that after Ian's audition we would have about 2 hours before hubby would be home with the other two munchkins. Why not take him with me on the run? Ah ha! Problem solved.

After a good audition and a fairly good school meeting Ian and I got home and got changed into running gear. I instructed Ian on what we were going to do, I would tell him when to go and we would run for a certain time and then walk for a certain time. And to stave off any hopes he may have of 'beating' old Mom I told him that we were to match our pace of running so that he was next to me. We were not racing!! We headed out the door and I was curious to see how Ian would rate as a running partner.

I now understand why some articles recommend having a run partner. Having Ian with me definitely made a difference in how I ran and how fast I went. First off, he had the great idea of getting off of the road and running on the trail that is in the golf course which runs throughout our housing complex. That way we could run/walk without fear of being hit by a car or trying to avoid all the cars parked on the road. Then I noticed that since I was also keeping an eye on him and making sure he was keeping up and trying to keep up with his idle chit chat I wasn't so worried about falling as I was with the first run I did. I was still thinking left, right, left, right but the "don't fall" phrase dropped out pretty early.  The proudest moment was when I realized that I had to tell IAN to keep up with ME during one of the run intervals. I hope it was because he truly was getting winded and not just placating his Mom and letting me think I was outpacing him. Either way, it felt good.

We reached our driveway puffing and feeling good. Another run, better than the first, was under my belt. For once, the movement DID feel good. I listened to what my body wanted to do and how it could do it and it helped. My thigh muscles are sore, of course, but it feels good. It's weird to say that, that part of me is sore, but that it feels good. I'm still wrapping my head around that idea.

I will probably never cross paths with the dragon lady again. I don't even remember her name. And even if I did, I would never admit that the exercises probably did help protect some of my flexibility. It's a pride thing. But there was one thing she did also always say to me, "Listen to your body, you are the only one who knows what it can do." And ok, I'm listening.

I like to move it move it

Today was the first day of the running part of my training program. I was nervous and was thinking about it alot last night. Would I even be able to do the 30 seconds running interval? What if I hurt myself the first day? Was this just a crazy idea? It didn't help that I ended up staying awake until 2a.m. reading a book instead of getting much needed rest. With only 3 hours of sleep under my belt the day started like most others: wake up the boys, feed the boys, clothe the boys, drop boys at school.

Now the youngest one stays home with me until preschool starts at 1 so usually I have a shadow throughout my morning. But it would appear that the nasty cold bug has bit my little midget. He fell asleep on the couch and all was quiet in the house. That was not good. When it's quiet I can hear myself think. When I can hear myself think I tend to overthink things that I should probably just let go but don't. I obsess, thinking about the things I should've said or should've done. I start working myself up feeling angry and disappointed about a situation that really I should just let go. By the time lunch rolls around I'm pretty keyed up, tired, and slightly dreading the impending run.

After dropping off my revived midget who ate lunch and seemed to perk up when given ScoobyDoo fruit snacks I headed over to my parents house (aka the retirement villa). After stretching a bit, putting on my now fully functional mp3 player (yay for charging!) and I opened the front door and took a deep breath. I can do this.

I figured I shouldn't just hop out the front door and start the first 30 second run interval. So since I had mail to drop on the mailbox I quickly walked to it and figured that was a good warm up. Using my cell phone I found the stopwatch function and hit START.

The first running step felt weird. I can't describe it. I felt like I was limping quickly. I could definitely feel that my right knee is weak and I'll need to work on strengthening the surrounding muscles on my cross training days.  Next thing I knew the first 30 seconds were over and I was walking again for my 1.5 minute interval. Ok not too shabby, I didn't fall. And it went from there. Run 30 seconds, Walk 1.5. Right foot, left foot, right foot, left foot. Don't fall. Right foot, left foot, right foot, left foot. Don't fall. As it went each run interval got a little easier. I found a rhythm that felt comfortable, not that limpy stiff gait that I had in the first 30 seconds, something that I imagined felt like running. I mean, I've never run before so I wasn't sure how it would feel but I assumed it must feel like this, or something kinda like it.

I did my cool down by walking back to the villa, feeling good. I was sweaty but thankfully today was a rare cool day in the desert with a high wind so not as bad as I'm sure I'll be come the end of June. As I walked home I realized that the anxiety and tension that had filled my head all morning was gone. While I was running all I focused on was putting one foot in front of the other (and not falling). It didn't matter what else was going on in my life, for those 20 minutes my only focus was movement. It was freeing. That anger, anxiety, tiredness wiped off of my brain with the basic instinct to move the muscles, tendons, and sinews of my body to propel forward and keep going.

It's been about 3 hours since the run. My body is definitely letting me know that it is not amused. I'm sore but not the bad type of sore one usually endures with Arthritis. The bones don't hurt. The muscles are sore and tired. If they could talk, and they sometimes do, I think they are saying "What the HECK are you doing to us? What is this? Are you insane?!" But so far the joints are staying quiet. My mind is also quiet. Still relishing those 20 minutes of stillness that rarely happens in my mind. I remember watching people run when out and about. I would always interpret the expressions on their face of a person who is upset, in pain, preoccupied. But now I think that while I'm sure some of them were in pure agony, there were some that were just of the single mind of focusing on moving the right then the left foot. Moving forward, moving their bodies, just moving and nothing else.

Death of an MP3 Player

May 16, 2011. Yesterday was rough. Woke up filled with a head ready to explode, thank you children and hubby for sharing your cold germs! Fannnnnntastic. Spent the day on our couch. Just me, Criminal Minds Marathon, tissues and various over the counter congestion relievers. It's amazing I wasn't seeing dancing hippos with tutus. I was making some wicked combos of Benadryl, Tylenol Cold and Advil Congestion Relief. I knew today was the kick off day of my first phase of training and I wanted to get as close to 'healthy' as I could.

Woke up this morning feeling somewhat better. At least I didn't want to rip my face off to relieve any pressure so I took that as a promising sign. Got the boys ready for school and packed up my gym bag. I'm not a 'regular' at the gym so my gym bag is probably considered kinda sad by a gym rat. A bottle of water (hydrate hydrate!), my mp3 player and a hand towel. But really, what else could I really need? Dropped the older 2 boys at school and let the youngest, Ben, know that we were going to the gym. His response, "Finally!". Oh the honesty of children... Ben then went on a 10 minute discussion of how at the gym I work out and get skinny while he gets to play with all of his friends. I was informed that I was not to come back to soon and disrupt his social time. Oookay boss.

Arrived at our local Y. I go to the Copper Basin YMCA. A very nice facility, way better than the old one we attended in Illinois. Very clean, equipment is in excellent shape. No funky gym smell. That smell of stale sweat and socks that have been forgotten in lockers years ago that usually inhabits a gym. After dropping off the royal king of social butterflies in the kids room I headed to the equipment room. Now according to my program my first day is supposed to be cross training. Any type of exercise, my choice. So I though I would start off with the elliptical which I find is easiest on my knees and hips.  I found one and climbed up on it.  I do this carefully, one time I went to get on an elliptical and the darned thing moved and I almost fell off of it. So now I have a paranoia that I'm going to step on and then oh so gracefully fall off the other side and never be able to return to the gym out of humiliation. So I do very carefully get on the elliptical...First thing is putting the water bottle in the holder, check. Then I pull out my mp3 and press the on button. Nothing. Oh come on. I then start pushing all the buttons thinking I had just forgotten which was the on button (trust me, it happens when you have chemo brain). Still nothing. Not a blip. After 2 minutes of desperate mp3 squeezing of buttons I come to the realization that my first work out will be sans music. This sucks. I really enjoy blocking out the sounds of the people around me and it also prevents people from striking up a conversation with me. Yeah, I've got issues with people. That's a whole other blog trust me. So I suck it up, shove the defunct player in my bag and grudgingly get back on the elliptical. At least I have a machine in front of a t.v. so I can feign complete absorption into the program in front of me. Oh crap, it's Fox News...

15 teeth grinding minutes later I'm sweaty and had completed .80 of a mile. Not bad considering I'm congested and it's the first time in the gym in lets just say several months. I'm also thoroughly convinced that Fox News is nothing more than a tabloid with really stupid reporters.  Though I did enjoy listening to the lady in front of me do her acapella rendition of Usher "My Boo" while biking. If it was American Idol I think she would have made it to at least the final 5.

Next was weights. I use the machines and not free weights, I don't trust my hand grip to be able to safely keep a secure hold on free weights. I alternated machines for my arms, legs, back, and abs. On my first machine I heard the grunts of what I thought was a man doing free weights. But there was no one over there. I moved to the second machine and still heard what was becoming slightly erotic moaning coming from somewhere in the gym.  Hmmm see this is why I need my mp3.  Third machine I really look around to see this lady on a machine working her biceps. This woman would make Linda Hamilton in Terminator look like a wispy twig.  She had muscles. Her muscles had muscles. And apparently she really really gets enjoyment out of pumping ridiculous amounts of iron. Really. That was the source of the moaning. She moved along and finished and silence refilled the gym. I made a mental note to be sure to spend extra time wiping down that piece of equipment once I got to it....

45 minutes later I was done with my work out. I did enough to break a sweat and I felt that lovely ooey gooey warmth that runs down the muscle when you do work it. Day one down. I picked up two class schedules to keep my cross training days interesting. I cross train 3 times a week and then running 3 times as well. I saw an aqua aerobics class that looked like fun while I was working out. So I think next Monday that will be my workout. Wednesday is my next cross train day this week and I'm going to try something called ABS-olution with Trish.   I picked up Mr.Social Butterfly and apparently it was an acceptable time for him to end his reign in the kids room. I'm now charging my mp3 player in hopes that tomorrows first run will be to my tunes. Otherwise I won't be able to drown out my wheezing...

The begining of every journey begins with one small step.

June 21st, 2010 Chicago, IL.  This was the big day. It was two years in the making and it had finally come. This would be my 13th surgery. I'm not incredibly superstitious but still, the fact that it was my 13the surgey did not escape me and maybe made me a wee bit worried. On this day my surgeon would be performing a Roux n Y on me. Gastric bypass. Now I know a lot of people think this is the 'cheaters' way to losing weight but the surgery was being performed for different reasons than that of celebrities like Star Jones or Carnie Wilson. 

When I was diagnosed with JRA the only treatment was massive doses of baby aspirin. Actually to call that treatment is wrong. The aspirin was merely a way for me to deal with the throbbing pain in my right ankle, it would not stop the progression of my disease, merely make the pain slightly easier. By massive doses I mean my parents had to buy new bottles of aspirin about every 2 - 3 days. Aspirin is incredibly harsh on the digestive system. Then I was given prednisone, a steroid, which also over long term use will cause ulcerations of the stomach. By the time I was 25 I had several severe ulcers in my stomach lining. I lived on anti-acid pills. I could make a cocktail of pepto bismal, antacids, and tums in a jiff and then pray that I would sleep through the night without vomiting stomach acids and bile. It took me a year of living like this when I finally just could not take it anymore. After many false starts, crushed hopes, and intensive search for the right surgeon and right program I found my surgeon and started the process of getting my gastric bypass. By having this surgery I would no longer have the intense burning pain in my gut that often made me wonder if I actually was harboring a very angry alien in my stomach who would come bursting out at an inconvenient moment. As my surgeon said, the surgery would also save my life as several of my ulcers were dangerously close to perforating my stomach lining.

Surgery went smoothly, no problems at all. I woke up in recovery and all I could think was: ok, now what? What would my life be like now? I had taken the presurgical courses which outlined how I would have to change how and what I ate. How I would need to focus on proteins, protein shakes, calorie intake, etc. All these things I never thought of. It was rough the first few weeks. I had two drains coming out of my stomach which made me very uncomfortable, I did not want to leave the house with those drains. Watching my family eat was no big deal, I had no appetite. I worried that I was not drinking enough protein but my doctor kept telling me I was doing fine and not to worry so much. As long as I followed the instructions then I would be fine. Imagine my shock at my first post op check to find that I had lost a whopping 15lbs in two weeks. I started at 227lbs, size 22 pants, XXL shirts. I hated mirrors, I hated clothing stores and I especially hated trying on clothes in those annoying small rooms.

Over the next 11 months I followed my instructions and stopped worrying and the weight came off. By April I was down to 138lbs, size 10 clothing and medium shirts. But more than that, I stood up tall, I walked with my head held high and I was smiling. All the time. I felt ALIVE. My arthritis still hurt, but not the intensity and frequency that it had before.  I still needed my meds to live life. I do injections weekly to keep my arthritis under some sort of control. I still needed pain meds daily to cope with the pain but I still felt better and more ALIVE than I had ever before. I could sleep without being woken up to a mouthful of burning acid. Heck I could sleep lying down and not propped up by all of the pillows I could find.

I was more active, hiking trails with my family and during one outing with my 3 boys, navigated a very difficult train up the side of a mountain in our area. For years I had wanted to be able to climb up one of the mountains that surrounds the Phoenix Valley. It was never a possibility with the shape I had been, with the joint pain I was suffering. But there I was, on top of this mountain, with my 3 boys who also were so happy to see their Mom smiling.  It struck me at that moment, my world of possibilities had opened even wider after having the surgery. I would never be a star athlete but at least now, I could TRY things that the doctors had always said I could not do. Like running.

From day one the doctors had told my parents that I would never be able to run. The impact would damage my joints and the loss of flexibility would limit my ability to run with a 'correct' gait. As I got older they would remind me of this with each visit. In school I was given an excused note so that I never had to join in the class with doing their 15 minute mile runs. Then as I got older and I gained more and more weight due to both the steroids I was on for the disease but also from the stress/depressive eating I would do to stuff down my feelings of anger and loneliness that comes with the disease and being a teenager. It was a vicious cycle.

Now, I could see a glimmer of hope. That the one thing I had NEVER EVER been able to do might be a possibility for me. The docs had said, you will never ride a bike. I did it. They said you probably will never be able to have kids, I had 3. They said you can't roller skate, I tried it once and well, I didn't like it but at least I can say, I tried it. The one thing I've never tried, I never attempted was running. 

That brings me to today. While planning a family trip to Disneyland I came across an article talking about the 1st ever Tinkerbell Half Marathon being held in January of 2012 in Disneyland.  I love Tinkerbell because my youngest son loves Tinkerbell. He loves her so much he has a bedspread with her on it, he has a poster of her, and at one point when he was 3 he wore sandals with Tinkerbell on them. Now before people think that we are letting our boy be 'girly' let me assure you, he loves Legos, he loves Ben10 cartoons, playing in the dirt and playing pretend games involving shooting and 'boy' themes. But as he tells me, Tinkerbell is cool because she builds things. And she's pretty. Very very pretty.
Arthur and I's ultimate goal

I looked at this article and thought, can I do this? It requires you to be able to keep a pace of a mile every 13 minutes. I've gone to the gym a few times and knew that on average I could complete a mile at a walking pace at around 11 - 12 minutes. I thought that maybe with training I could do this. So here I am, tomorrow May 16th I'm going to start training. Me and Arthur, my nickname for this disease that has been a constant companion.  I've talked to a few people who also have arthritis who have completed marathons and searched the internet for training programs. In my research the theme seems to be to focus on small chunks of the race, one mile at a time. So instead of setting myself up for failure and overwhelming myself with right off training for the half marathon I'm focusing first on training for a 5k. Once I do that, which I should be done with by the beginning of August I will then train for a 10k. After that I will train for the half which should bring me right to January.

I've picked this training program to guide me and will blog about how it's going, how it affects my Arthur and starting this new aspect of my life. I hope you will join me on this journey. Like my Harley loving Dad says, it's not the destination, it's the journey.

5K Training program