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So my Mom is having another operation.  This time it is a fusion on the Lumbar spine.  Due to her RA she has worn down the discs and now there is nothing left for pain management other than to fuse the spine.  This is happening the first week of April and my family has already turned to me to ask if I can take care of her through (at least) the first week of recovery.  I’m not thrilled to do this as it really does fall to me for my single-ness and location.  It isn’t that I don’t want to be a good daughter, but that is asking a lot for someone who is already dealing with a lot of stuff of her own.  

She has been down the Vicodin like jellybeans.  I know that they will have on that the first couple of weeks.  She can get very snarly taking that.  She is snarly in general.  I am not trying to be selfish, but I need to establish some boundaries with her.  I don’t think that I can live there.  I will commute.  I also need to be able to teach my tennis too.  That helps to supplement the income – which is already low.  I have plenty of things that I am dealing with too, and income is an essential part of my stability.  I just wonder what they would do if I wasn’t here to do this?  Would they hire an actual at-home nurse?  I would hope so.  I mean she is going to be in bad shape…like needing help wiping her butt and bathing bad shape.  

Is this something that I can psychologically endure?  I know plenty of families take care of one another like this day in and day out.  I want to be a good person, like those people that I admire and wonder at how they do that.  The main issue is the constant stress that my Mom is in my life.  We have always had a traumatized relationship.  She can be so passive-aggressive and act completely helpless when she is actually more capable.

Right now I’m in pretty intense therapy for a mental breakdown that I had over two months ago.  I was in an all-day outpatient hospital program.  I’m still attending it, but 1/2 days now.  There is no doubt that going to my parents’ home each day will be trying on me.  I’m now done with this.  It simply is what it is: Shoganai.  

In the meantime, I was cleaning out my garage in order to get to my cross collection.  I think I may have broken some crosses in my attempt to move the container, however, I wanted to dig those out and put them up in my house in order to balance out the Buddhas.  At the moment that I walked in the house and popped on the TV, there was the breaking news of the white smoke coming from the chimney of the Sistine Chapel.  So we have a new Pope – and that happened while I was looking for my crosses – strange, right?  The pomp of all of this is really pretty amazing.  There are so many things happening on TV that I’m wrapping this up so that I can watch history being made.

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I’ve been so busy – and busy enjoying life!  That is up until this year when the health has again taken a turn for the worse.  There will be a warning right here and now…this post will have some grossness…digestive issue nastiness.  So sorry.

When I left off I was down 80 pounds just four month post-RNY Gastric Bypass.  I was blogging all about my thoughts on a different site (specific to that) and for the most those thoughts were very positive.  However, given my more recent difficulties – I’m not sure that those 80 pounds are really worth this.

On the positive side of things: 2011-2012 was an AMAZING stretch of time for me.  I had such a rewarding year.  This was due to my good health.  In the summer of 2011 I played more and better tennis than I had in ten years.  I was on travel teams, hitting in the middle of the day heat, running all kinds of special events and reconnecting with that whole world I missed.  My school year was equally good.  Given good health, I threw myself into work and developed so many wonderful programs.  The class of seniors were so great and I was chosen to give the faculty address at graduation.  It was all just going so well.  

My weight loss slowed and then stopped last Spring.  I will admit that I didn’t keep up my working out nearly as much.  Then, while riding horses through very steep trails in the Colorado Rockies, I hurt my left hip flexor.  This was in June.  I’ll come back to this.

From all of this time following my procedure, I’ve also been chronically anemic.  I’ve had “profoundly” low iron saturation levels.  There does not appear to be any internal bleeding and I’m taken ferrus gluconate supplements.  This has not improved my levels enough.  I was as low as 5%, and after two months of supplements I was up to 7%.  Normal is 10-15%.  

My thyroid has also been all over the place, hence my dosages keep adjusting.  As a result, I’ve been fatigued, shedding hair, having brittle nails and really dry skin, and – of course – struggling to drop any pounds.  Combine that with the injured leg, and I became extremely sedentary.

The leg injury refused to heal all summer long.  Rather than say something, I thought if I stretched and played through the pain (yes, I still played tennis) that it would just go away.  I often use the “just go away with time” method…probably not the best for someone with a chronic disease.  

Anyway, in August I stepped out for a shot and went down in bad, bad pain.  From then on simple things like getting in and out my Jeep, slipping my feet into underwear and pants, putting on shoes and socks, and crossing my legs were so unbearable that I would tear up from the pain.  I began physical therapy at the end of September and I’m still going even now.  My right-side leg pain has improved (which was aggravated from walking so unevenly).  My left leg is still really weak and sore – but better.  I’m just really slow to heal.  I blame the overall malnutrition and goofy blood levels for this.

There is more….

With my nutritional deficiencies comes the additional muscle weakness.  When I was a sophomore (back in December of 1989) I fell down a flight of stairs and fractured C4 and C5. In all of that time since, my neck muscles have helped to support my head.  In the past year I began to experience all kinds of neck pain.  This is mostly confined to the sub-occipital area at the base of my skull.  I feared going in for this problem because anything on your health record related to “spine” and the insurance companies treat you like a leper.  I had been free of such diagnostic codes for long enough that I was really, really hesitant to do anything now, so I played the “it will go away with time” card again.  I made the best of the pain, but it progressed and worsened to a point where I could no longer endure it.  So I went back to Northwestern in Chicago and saw a new doc (mine from 1989 has retired years ago).  After looking at x-rays and assessing my symptoms he order PT too.  So I’ve been alternating my therapies between hip and neck.  I’m quite the regular at the office – it feels awkward, like I should be done by now.

Anyway, there is some degeneration at 4/5 and a little increased angulation.  I had the old x-rays and MRIs from 1989-1990.  The surgeon did not think that a fusion was advisable at this moment, but that I would do better to try physical therapy.  The neck does seem better for that time I’ve spent, but it is mostly due to all of the strength and conditioning I’ve done – and that is good!  

One of the strange side effects of all this medical stuff is that I’m having femoral nerve pain down the left leg, and occasionally my left leg just doesn’t work.  It is that pins and needles thing, but instantly.  I could be walking and then, bam – my leg is like dead weight.  I’ve discussed this and I’ve been told that it is all from the torn sartorius.  I guess scar tissue could be rubbing up against that nerve.  Again, the wobbly leg deal is a huge limitation with tennis.  I’ve tried hitting a little this past fall and I could sense my leg about to give out.  What a bummer!

Okay, grossness on the way….you are warned.

Now as I type this I am surrounded by water and broth.  I’ve been back to a clear liquid diet following my trip to the ER yesterday morning for severe dehydration.  Merry Christmas.  It sounds and feels like I have a hurricane happening in my gut.  I haven’t eaten in over 36 hours and yet I’m still running to the bathroom almost every 30 minutes.  Yes, in one day I’ve been on the toilet about 20 times.  And this is no little squirt thing.  This is like a geyser of liquid.  It has not slowed at all.  I’m home, but very worried.  The ER said Gastroenteritis and that it is tied to the violent flu bug going around.  Sure, that would make sense.  However, I’ve never had such terrible abdominal pain (not one-sided).  I explained this and they did x-rays.  The doctor said that I have the Gastroenteritis with paralytic ileus.  In other words, my bowels are completely dilated and not functioning.  I keep forcing the fluids in and the diarrhea gets exploding out.  It is impossible to get any solid rest.  My fatigue is actually painful.  My lips are cracked.  The gurgling and cramping add to my sleeplessness. I’ve had water, tea, broth, and watered down apple juice.  I’ve also taken Gas-X, but that doesn’t seem to do anything.  I thought maybe it would calm the churning.  Anyway, I’m sure that the 3L of IV fluids I received yesterday are gone.  Here is what I’m worried about now.

While this very well may just be the worst stomach bug I’ve ever had, I also wonder if this is IBS flaring up…or my liver acting out – there is certainly a lot of bile present.  I had my gallbladder out in 2004, so it isn’t that.  I’ve had a really hard time absorbing things post-op: vitamins, synthroid, protein…so what if my liver is a mess as a result?  This is what I fear.

Ok, so this is going on my 2nd day of this – no let up, other than I’m not vomiting too.  Saturday morning I was vomiting and having the runs – at the same time…wow!  At this rate, I don’t see myself getting to my family’s Christmas Eve time together.  If it is a stomach flu, this is the worst one I’ve ever had.  I’m not about to get others sick.  If it isn’t stomach flu, all of the rich and delicious food at dinner tomorrow will be torture for me – whether I don’t eat it or would try….either way it will be hard.

So given that absorption is a pretty serious long-term problem from RNY Gastric Bypass, I’m not so sure about this in hindsight.  Additionally, my really, really awesome doc who has seen me through all of this just wrapped up his practice here in order to move to the East Coast.  I just recently made an appointment with a fellow doctor in his practice, but I have yet to see her.  I am seeing her this Thursday.  I hope to get some tests lined up so that I can treat all of this mess.  I also hope that my stomach settles way before then.  

Anyway, much more has happened in two years.  I will hopefully not wait another two years to update.

Since this is about R.A. – I will say that having done the RNY Gastric Bypass has really limited any of my symptoms.  That is one of the things that comes with that procedure.  So, while I’m not taking the immunosuppressant cocktail and suffering from flare ups, I am trying to resolve other issues.  Again, in hindsight, I don’t know what is the worse of two evils.

 

Have you ever experienced something that you can not explain or really understand?  I’m not sure how to begin to write this entry as this whole blog is supposed to be about R.A.  This particular entry will be about spirituality.  I am not an expert of this in any way, but I do feel like I have read a lot of books while researching my way through a long and worthwhile quest.  When I was first diagnosed with R.A. it felt like the whole possibility of my life vanish.  I know that is overly dramatic wording, but with over thirty years of watching my mother deal with this disease, I feel, at times, like I am looking into a crystal ball.  There have been so many instances when my mom has experienced something medical and I’ve promised myself, “I will never….” fill in the blank.  As I’ve gotten older, the similarities are completely frustrating.  And in that frustration I allowed darkness to swallow me.  I turned away from hope, positive thinking, and even God.  I wasn’t like that was a decision I made consciously in one moment, but something that took place gradually over time.  I stopped going to church, I stopped praying at night, I stopped thinking about anything good.  As with depression, a cloud of gloom settled over me and I saw a future where I would suffer this all on my own, growing into an old, crippled spinster with no spouse or children to help to take care of me.  I would be forgotten, and my fate was sealed that I would not ever see old age anyway.  I had a heart condition to help me to the grave even faster.  So, obsessed with death, I disconnected from everything.  I slipped into to gluttony and sloth.  I slid into despair.  My wrists hurt, the headaches throbbed, and I was tired all the time.  This felt like a trap because I was trapped.

I remember thinking that if I could try to be spiritual that would feel good.  Just three or four years before this point I had been so spiritual.  I was meditating at Buddhist temples, going to church, and feeling that I was safe because I was never alone.  I had angels and God with me as I made my way on the earth.  I had profound thoughts about grand things.  I was excited about my life.  I worked out, traveled, wrote, and enjoyed a healthy social life.

June 13th 2010….I never finished this post.  School started, work was crazy, and now school has ended.  I will pick up the blog again as I get ready for some rather important life-changing stuff to happen this summer.  More to come……soon!

“Remember that not getting what you want is sometimes a wonderful stroke of luck.” ~His Holiness, the Dalai Lama

Today I am grateful for my amazing, kind-hearted, soft-spoken Dad.  My Dad is like my own personal life tutor.  He is gentle and ever-present.  His love is the very definition of unconditional.  It never makes me feel clausterphobic.  He is not someone who says, “I love you” or gives a lot of hugs.  In fact, he is very, very reserved with showing any emotion on a regular basis.  That is why, when he does get emotional it affects all of us so much more.  He never raises his voice.  He doesn’t punish in a painful or spiteful way.  He expresses disappointment – worse than any screaming match or harsh words I can endure.  Thus, I know where, how, when I’ve disappointed my father throughout the years…those times stick in my throat and I choke them back as I did the tears.  My father is the embodiment of sacrifice.  He has given so much to stay in a marriage rocked by disease.  My mother’s R.A. has been a curse.  My father, owner of a youthful, wide-eyed wanderlust spirit, has never seen even a small fraction of the world he once wanted to experience.  Vacation funds have been diverted to medical expenses.  Bike rides, hikes, and camping under the skies has given way to comfortable hotel rooms with sturdy beds.  The last time we went camping as a family I was in grade school and I’m not even sure if my youngest sister was born.  That is a lifetime ago.

My Dad has his close friends, he participates in church and with community philanthropies as much as he can, he is on many of the neighbors’ speed dials as a free-of-charge “Mr. Fix It.”  Despite all of the demands of maintaining a career in the competitive world of sales, he continues, as he always has, to put his family first.  He drops everything at a moment’s notice to be there for his 96 year-old mother, my mom, me and my sisters, and now his granddaughter.  The 18 month old is the light of his world these days.  Prior to that, the mini-schnauzer that I bought against their wishes in 1994 at the beginning of my junior year at U of I, Molly (put down in 2006) was the one thing that could put a smile on his face, guaranteed.  I think both Molly and now my niece represent the reciprocity of unconditional love.  The rest of his family does love him, but with the condition that we have cost him both the highs and the lows of the experience.  Hence, knowing that there has been disappointment there.

I don’t know how I would have endured all of my medical mess over the course of my life, and especially in these past two years where both the physical and the mental woes collided at the same time, without my Dad.  He has been there through it all as I spilled my guts, was sad, was afraid, was angry, was frustrated, was hopeless, and got determined in intermittent spurts of motivation. I am not comfortable showing all of those cards to my Mom as she deals on a daily basis with all of her demons…demons that have become a rift in the relationship that I have with her.  My struggles spawn a blame game with her which then, inevitably, ends up causing her to feel worse about herself, her parenting, her marriage, and things from her past that she can not do anything about.  Thus, for much of my adult life, I’ve sheltered her from my raw emotions and have been too guarded to feel that same connection with her that I appreciate so much with my Dad.  I know that bothers her too, but it isn’t nearly as bad as when I’ve let my honestly creep out with her in the past and that sent her reeling.  I mourn that disconnect frequently, but it is a coping mechinism that I am thoroughly aware of and choose to enact.

Having a chronic disease like R.A. is much more than simply treating and managing R.A. alone.  Everyone has their own personal hells, challenges, and struggles and struggles.  Simply seeing something as a plot on a two-dimensional timeline hardly begins to hack away at it.  I can not begin to unravel the complex, knotted web of complications that are a result of choices upon choices I’ve made througout the years.  Coming into such a predicament, as we all do, it really helps to have someone like my Dad there to help and simply provide that constant calm presence.  As much as he is a hard-core, tried and true Roman Catholic, he sure does live out some Buddhist philosophies too.  I like that!  Maybe that is why I used that quote today.  My Dad has not gotten what he had hoped for in his life on a surface level: vacations, time to learn to play golf better, a nicer car…but, he has earned the genuine and deepest of love and respect from his family.  Given a choice, I bet a lot of men would want that over anything else.

Today the two families are getting together for a father’s day picnic.  My brother-in-law’s family is that p.d.a. type; they hug and kiss, tell eachother that they love one another, and truly like spending time together.  We are not the opposite end of that spectrum, just not so far on their side of it.  Today I am feeling really bad physically….maybe it is all that crazy stormy weather that has been rocking this area lately.  Maybe it is that I’m just experiencing a flare up – or both….or neither.

My right ear is not working.  It feels clogged up and the pressure hurts.  I found out that sometimes R.A. patients can have flare ups in the fluid of the ear as it is very similar to your joint fluid.  Who knew?  I’ve still not scheduled an appointment with an E.N.T. doc – and I know I really need to.  This ear thing and my constant sinus problems have combined to make me a little too wobbly and dizzy.  I didn’t even hear my phone ringing yesterday because I was laying on my good ear side reading a book.  I was that deaf…and I need to fix that a.s.a.p.  But, despite the health issues, I’m very excited to go to this picnic.  I can’t wait to just give my Dad a hug and let him know that he is the best.  He doesn’t want me to buy him anything….fine, I’ll still get him a card.  But, being a closet Buddhist, my Dad knows that it isn’t about “stuff,” it is about having that time together.  That just adds to the list of why my Dad is the best!

So on this father’s day, I am grateful and there is simply no better medicine than love.

So I’ve have the GoWearFit for a little over a month.  Although I am not outwardly attempting to do anything fancy with my workouts or diet, I am learning a lot about how my body burns calories, my sleep efficiency, and where and when I am active during my otherwise sedentary day.  I used the “report” generator on the website to create a monthly analysis.  That was really informative.  The most interesting thing is seeing how my sleep patterns vary.  I’m not that efficient at sleep.  It is really something to see your actual sleep time blocked out.  There is an interesting shift that happens with my sleep around 2 a.m.  I go from burning 1.2 cal/min to 1.7.  That must be because of increased brain activity during my REM cycle – I would guess.  If I work out in the morning then I can burn more calories by just doing what I normally do.  Also, by eating breakfast, I keep my average cal/min higher throughout the morning than if I don’t eat anything when I get going in the morning.  Lastly, all the running around I do with the team after school seems to wear off rather quickly.  Honestly, this is a great tool and the only complaint I have is that website is really, really slow.  It is not supported by Mozilla, which is what I use for everything, so I have to use Explorer.  Maybe it is that or the Java that is slow, but it takes forever to get from screen to screen, upload, and then view the results.  It could also be that the site is just overwhelmed too.  Nonetheless, it is totally worth it and I’m more than impressed!

It snowed last night and this morning.  The weather looks pretty bad for tennis this week.  I’m taking another Sunday off since I am completely burned out on work.  I still have over 100 research papers to grade.  I do a few here and there throughout the day.  I just need to bear down and do it.  Making locker tags is so much more fun.  I also ordered the boys bag tags.  We shall see how that turns out.  I’m really enjoying the boys team more than the girls.  The boys work out harder, don’t complain about running and lifting, and get really pumped when they win games.  The girls are fun in a different way.  They get into the “sister” stuff more: getting little gifts, taking pictures, and dressing up.  I’m making the guys dress up for home matches.  They either love or hate it.  There are a few guys that know they look good and strut around a little taller and prouder.  The boys that like to blend in, because they are self-conscious, seem to squirm a little as they walk the halls in a nice button down shirt and dress pants.  It is good practice for them though.  They have come a long way in just a little while.

Okay, a few random thoughts then I’m out.  I had a very vivid dream the other night where I was holding the hand of some guy that I knew loved me – it is a dream.  It felt so real and I realized how nice it was to have that personal contact.  It made me realize how starved so many of us are for something so simple and reassuring as that.  The PLANET EARTH series should be mandatory viewing for hish school students.  Kids need to appreciate the world that they are a part of – and they need to feel a part of it, not disconnected because of their technological dependencies and instantaneous lifestyles.  Kids should also have to do some sort of coursework which requires community service: spending time with the elderly, cleaning up roadsides, visiting kids with disabilities.  The types of kids who already do this are not the kids who would most benefit the most from doing it.  I can think of a handful of my students I would love to send on a PeaceCorps kind of excursion.  I wish that I could just take them to Uganda or Peru or Nepal myself.  I cried watching the series finale of Battlestar Galactica.  I love how brilliantly they wove all the stories together at the end.  I kind of saw it coming based on what I know about hominid evolution.  I was sad that Starbuck never go to tell Lee that she loved him and vice versa.  Instead, she vanished and proved that she was indeed an angel walking among her people.  She was not afraid of death, rather she was afraid of being forgotten.  That is my fear too – must be why I write.  The characters of Divine Six and Divine Balter were very cleverly inserted into our modern world to provide an interesting commentary on “all this happened before and all this will happen again.”  The cyclical nature of the universe as a whole is represented with this concept.  I think about plate tectonics.  With the exception of The Himalayas, our mountains are eroding.  Eventually new ones will be made and then those too will erode.  It is amazing to consider that the gorgeous white sands of Florida are the quart which has been polished from the erosion of the Appalachian Mountains, which were once greater than the Rockies.  I totally dig mountains – so I live in the flatlands.  I should have been a Geo scientist.  I just wish I had more time and money so that I could travel and then write amazing stories about nature.

So, now that I’ve rambled….which is completely due to my whacked out sleep schedule…I apologize, I will wrap this up by saying the R.A. has been bad.  I’m not dwelling on it.  I’m so stiff and sore though.  I think it is all the major weather stuff (bringing me back to the assertion that our climate is infact shifting and our storm systems have become more dynamic in order to balance the greater swings from homeostasis).  The pressure change directly impacts joints.  With low pressure systems there is less compresion on the joint so it can swell more easily.  Okay, Planet Earth is showing the snow leopard.  Gorgeous – simply gorgeous creature!  Maybe I’ll grade some more – eventually.  I want to do more Eco-teaching with literature and critical thinking on these kinds of things.

I am so sorry for not posting here sooner.  I simply got very, very busy: things like keeping up with Doc appts and attempting to find the time to prepare super healthy food and run around with a sick cat…yeah, life was kickin’ my sorry ass all over and I couldn’t sit still long enough to write without falling asleep sitting in a chair.  Now my sleep schedule is all jacked up.  I’ve been having a hard time stilling my thoughts enough to fall asleep, then I’m having such active and vivid dreams that I’m often jolted awake way earlier than the alarm.  All in all, I’m lucky to get 4 or 5 hours of sleep.  This is why I had THE BEST Sunday yesterday.  I took the day off working at the club and just slept!  I was crashed out on the couch with the sun pouring in through the window.  The cat, finally done throwing up, was crashed out on top of me.  The TV was off and we just listened to the wind and the birds.  It was so peaceful!

The R.A. has been pretty bad.  The lifting and working out must have tipped the pain scale.  I was having such a hard time walking after any stretch of inactivity.  Mornings were excruciating.  I was hanging on to the bed and leaning on a dresser to make my way those first dozen or so steps.  My fingers were locking up and I attempted to wear my new thermaskin gloves more often – even at school.  Those things ARE GREAT!  See my previous posts for the link to the store….and no, I’m not getting anything for the endorsement.  The velcro is very catchy, but they do warm the knuckles and wrists.  I am very glad that I’ve had them for those  mild and cold snaps of weather these past two weeks.

I’m also back to taking the damn shot.  Of course three days after taking it I was sick as a dog.  My migraines came back with my period.  There were two days when I didn’t know how I’d drive home.  Of course, this could all be tied to the lack of sleep – which I attribute to sinus trouble – which I attribute to my immune system on siesta due to the damn shot – or lack of sleep attributed to constant and increasing pain – and no, I didn’t take any pain medicine (which I could, but it tears up my stomach and then I’m not sleeping due to heartburn)….man it is all interconnected!  If one thing is out of whack the whole system goes screwy!  I do know that I NEED SLEEP!  This is not a good mental state: exhausted, emotional (hormonal emotional), and in pain.  I know I’m preachin’ to the choir here, right?  Put Monthly Mother Nature on top of all that I am was ready to rip heads off.  I almost cried in school the other day because I was just so tired of putting in so many hours with my before-school frequent fliers for detentions.  I just really need Spring Break to roll around.  Then I can rest and enjoy some daylight.

The GoWearFit has been awesome!!!  I dropped 4 pounds – very slowly – in maybe three weeks just by seeing what I’m burning without doing anything more than eating more veggies.  I love the MSG warning.  That goes off with all kinds of processed foods.  I’m shopping at Whole Foods (which I can’t afford) because I have so much stuff in the freezer that sends my alarm beeping “MSG! MSG!”  Kind of frightening when you consider all the chemical crap in most of our food.  I finished reading “SKINNY BITCH.”  That is a VEGAN brochure hidden in a catchy self-help title.  Basically, it scared me but I am still prone to enjoying an occasional vittle despite the guilt and horrifying images that come to mind with it!  The positive side of reading that is that I thought about food a lot more…the negative is that is sounds like the self-loathing self-talk of any woman who has ever had or continues to battle an eating disorder.  I’m not sure how I feel about it.

I’m thrilled that the boys’ team is really coming together.  We started with two coaches and two players – we were told that we had to have 12 to make the season a go.  Now I have 20 really nice and fun players.  They seem to really enjoy it! I didn’t secure the recruit from football who showed amazing promise, if only I could have pulled off a golden set….6-1 didn’t cut it!  I’m fine with that since I’m so pleased with the boys that are out there in 40 degree rain and wind.  They have given me a lot of moments to beam with pride.  We are supposed to play the school’s first ever home match tomorrow afternoon.  The boys are all dressing up in professional wear for school and I hope that the rain holds off.  I think we could stand a chance to win!  Our #1 singles came from soccer and is super talented despite his minimal playing experience!

I’m really hoping to get my sleep balanced again.  Although yesterday was a perfect day, those are few and very far between.  I need to use that kind of time to knock out research papers!  I have over a hundred to go!!!  Yeesh I need a T.A!

I decided to post today since I wanted to try and get some more feedback from my new GoWearFit.  Surf http://www.gowearfit.com – very, very cool!  This gadget, which I totally could not afford, is AWESOME!  You strap a little sensor to the back of your left arm and that is it.  It records the amount of calories that you burn doing everything – even just sitting here now typing this.  You can even wear it through the night and see the average calories per minute you burn while sleeping.  Not only that, but it also counts steps using a different technology than my crappy $16 pedometer.  Then using METs, you can track how many minutes of moderate and vigorous activity you do each day.  For all three of these options you can set goals.

My goals are to burn 3880 calories, walk 8000 steps, and get 60 minutes of moderate exercise.  I’ve been trying to get into the vigorous range, but I think that is reserved for running, because I’m totally pushing myself on the bike and elliptical and not getting above that 6 MET range.  So I’m seeing some interesting numbers.  First of all, it is damn hard to burn 3880.  I haven’t yet.  I can get to the high 2000’s – but that is with my normal walking around school and doing a bike or elliptical in the morning.  I haven’t yet done 8000 steps.  I didn’t realize how hard that is.  The moderate exercise is okay.  I think I need to change from 3-6 METs as the range to 4-6 since I don’t think my walking up and down the stairs is really enough to see progress.

There are some other cool features.  I’ve had the MSG! warning come up.  I guess the device can sense that crappy additive.  I ate a french fry on Thursday and no sooner than had that hit my lips than did the indicator start beeping.  That is really cool.  So, of course, I Googled MSG and found a bunch of really frightening stuff.  I don’t think I can go a day without some MSG and/or derivative getting into me.  It is everywhere.  Also, you can set the display to give you an alarm and message when you need a reminder – like to take some medicine.  All of this interfaces through the website.  The website creates reports and charts – it is awesome!  I tried to log food, in order to compare the calories burned to calories consumed.  The javascript failed and I was unable to complete this step.  It is purely a fault of my older computer, nothing against the company.

I am so used to the heart rate monitors I used to use almost religiously.  I wish I could see my heart rate.  However, I do understand that trying to scale feedback to fit a certain number does not provide as much feedback as this device.  My heart rate is unique and just because it is at a certain number doesn’t mean anything.  When you boil it all down it is all about banking.  In order to drop weight I need to burn more than I consume…that is what this helps you do – pretty effectively.  I just need to know what I’m actually consuming.  Considering the amount of calories it says I’ve been burning than two things could be happening here.  One, I’m eating a ridiculous amount of food – like over 3,000 calories a day.  I remember hearing that Michael Phelps eat 10,000 calories – that is a boatload of food.  I’m not sure what 3,000 calories of food looks like, but it seems like a lot and maybe that IS really the case.  I just don’t know since I’m too crazy to actually follow portion control.  The other thing I’ve considered is that my medication and thyroid thing is effecting how I actually metabolize fats.  That is, even though I’m burning a lot, the question is does it actually go away?  Is there something causing me to still bloat and stay heavy?

I ask this because I really, really want to get back to running.  I have dreams about running sometimes.  The impact from that kind of exercise combined with my weight gain has made running impossible for way too many years.  I just want to run and jump and not worry that my knee or ankle will twist and shatter beneath me.  I was watching the frosh football players do sprints last week and just wished so much that I could blast through the air like that.  Granted  that they are twenty years younger than me and in way better shape than I’ve ever been or will be, but it was great to see their huge kicks, explosive steps, and balance.  I want that!

So I decided to play a lot of tennis today.  I ran as much as I could.  Amazingly, I was awesome.  I haven’t hit that well and that hard in so long.  I was ripping serves, chasing down short balls, blazing forehand return winners, and getting down for my backhand.  I could sense that it hurt, but the rush of just doing it overcame the sting of each step and tightening in my fingers.  I know I am going to really hurt tomorrow.  It was more activity than I’ve pushed myself to do in more than eight months.  My boys tennis team starts tomorrow and I am going to try to be active with them.  I know that I’ll have good days and bad days with my RA, but I just need to push through the pain.  I’m only getting older, so make the most of the moment.

I saw a lady last week with really, really deformed hands.  Her knuckled were so swollen and her fingers were twisted in the “swans neck” shape.  Her hands stand out as the most shocking ones I’ve ever seen.  It made me grateful that I am not that bad – not even close.  I Googled images for RA hand deformity.  I don’t resemble anything like those images.  My fingers are a little curvy and my big, middle joint can get knobby, but I can use my hands fine once I get them going.  So, I did decide to buy the Thermaskin gloves – as a preventative thing.  I use them at night while I sleep.  I helps to prevent me from clenching my hands into fists while I dream.  I often wake up with nail marks in my palms.  The gloves keep me warm and relaxed.  So far, I think they are a good purchase.

So, as far as the RA goes this week, I just don’t care about it.  I want to and believe that I can get fit once again.  It is a long road and there will be pain with every step.  But there would still be pain if I did nothing too.  Might as well just adopt a fighter attitude and know that if I use my new “toys” the right way I can make some strides.  Ok, time to cook something for dinner.  Have a happy week ahead!

I’ve enjoyed the emptiness of the school’s weight room at 6:30 a.m.  I haven’t really pushed myself outside of my safety zone since I am just there with my assistant coach and a few of the guys from the team.  These guys will soon be switching to the daily afternoon slot.  So, just yesterday (Friday) I went down to the weight room after school.  Big mistake.

I walked through the door and saw a group of football stars hoggin’ all the equipment.  Once they saw me they were all shouting my name and egging me on to lift with them.  The rumors of my lifting days have circulated through to this crowd now from former students of mine.  One of my current kids loaded up a bar with 35’s and said, “come on show us how you can do this!”  The other guys gathered around.  “That is more than I can do” a little freshman confessed.  I was wearing my dress clothes and didn’t know if I should try.  The last time I did, I fatigued and had to get the assist to lift it back to the rack.  My student swung around to spot me, “come on, do it!”  My competitve spirit got the better of me and I plopped down on the bench.  I wrapped my hands around the bar and counted out “1-2-3” then my student lifted the bar off.  “Got it?” he asked.  “Uh huh.” I muttered and began the drop to my chest.  I knocked out 3 reps rather fluidly – which shocked me.  Hmmm, lifting this first before going through a warm up was key.  “Ok, now do the 45’s,” he said as he was already changing the plates.

“I haven’t done this in three years,” I whined back.  “Come on, I’ll spot and just do two.”  Against reason, I did it.  The other kids were impressed.  “You’ve gotta be one of the strongest teachers here,” one boy said.  “I’m sure I’m not,” I shot back.  I then did some medicine ball abs with the guys.  It was a lot of fun being active.  Yeah, it hurt.  I knew it would.  But I’m so glad that I did that since I know that I won’t always be able to, RA or not, age will limit me eventually.  No point in acting like a senior citizen when I’m not.

Today is shot day.  I’m not sure what I’m doing about that still.  I’ve been very congested and feeling run down (per my last post), so I’m just not confident that my meds will actually help.  I think I have bloodwork and a subsequent office visit coming up really soon.  I need to find some time to go bleed into a vial or two or three.  Tip: make sure to drink a ton of water so that the blood actually flows.  I had some really hard sticks over the summer when I was dehydrated.

I’m finally resolved about the summer.  I am NOT going to do my tennis camps during the day.  I’ll still teach the adults at night and on the weekend, but I’m looking into just doing some hard core fitness work on myself.  I know how to do it – I just need to do it.  So, hopefully that will be good.  I’m not sure how the money will work, but I’m willing to struggle for two months to make up for the year plus I’ve just pushed my health needs aside to run like a maniac through my work weeks.

My friend from college came up for a visit.  We were discussing the good ole days.  It feels like a lifetime ago.  I remember walking across campus in the bitter Midwest winter weather.  We talked about our skit from acting class and the places we used to go and hang out.  I’m so grateful to have her there to stir up some really nice moments from my past like that.  I’m grateful….for so much.

Tonight I attended the funeral service for one of my student’s little sister.  The girl died at age 8 from hydro-encephalitis.  I was filled with guilt that I allow myself to think that RA is so bad.  This little girl was never able to walk.  I complain about how walking hurts – at least I can walk.  The service was nice and I am glad that I was there to show my support.  On my way home I was struck with a craving for anything fried and fast food.  I realized that is was just my response to being triggered emotionally.

It wasn’t too hard to actually NOT go through a drive and order, then devour, some crap.  Rather, I went to Whole Foods and bought a bunch of healthy stuff.  I’ll probably have even more craving tomorrow, and the next few days, but I really want to get some of my fitness back.  I could give a shit about ever wearing two inch heals, but you can bet that I want to be able to grab hold of a bar with more than the 45’s on it so that knock out some solid lifting while I still can.  I still don’t know about that shot….I think I’ll opt out again.

This past week has been so crazy…and no, I’m not going to take the Methotrexate.  I have gone almost a week on four hours or less of sleep at night.  I began the 6:30 a.m. lifting sessions with all two – yes, TWO – of the boys interested in my pre-season tennis training.  I’m impressed that they showed up, but I’m disappointed that I don’t have more.  Nonetheless, I provided them with the workout cards and handouts I had prepared last week.  I then did a demo of the various lifts that I want them to do.  Once they were on their way I hopped on a treadmill and was witness to the sad reality that is the decline of my physical self.

Since I am also watching my parents’ pets while they are on vacation, my week has included a lot of running around.  I realized that I am not mad that I have to do this extra driving at the beginning and end of my day.  I am not mad that I have to wake up earlier than I am already waking up.  What – no, who I am really mad at is me; all of those un-checked choices to eat crap rather than something nutritious; to hit snooze rather than go work out; to think so small rather than volunteer…and so on and so on.  The whole quantum of my life vibrating throughout me as I planted one foot and the other on a friggin’ treadmill.  I was going at a snail’s pace and my heart rate was 195.  I could not believe the backslide.

Today I attended a training session required for teachers.  I was sitting in little chairs designed for Elementary school kids.  It must have looked like my ass had sprouted four metal poles, the chair’s legs.  We sat there for five hours.  The first steps I took to get out the door at 2:00 p.m. were excrutiating.  I was driving a route that I had not taken in nearly five years.  I decided to go ahead and drive all the way back to the beautiful apartment I left on January 2nd, 2005.  As if by devine intervention, the radio station suddenly featured a block of U2, “I Still Haven’t Found What I’m Looking For,” and “Sunday Bloody Sunday” among others.  The sudden warm snap called for driving with the windows down, the tunes kickin’, and me happily singing along.  I saw the old place and almost thought to turn in a check it out via a tour from a rental agent.  I decided against it.  The area all around my former abode has grown so much.  Then I went up the road to my former tennis club.  It is now a baseball/basketball center.

I have not driven there since I was force transferred in February 2001.  So much has changed.  I remember the little bend in the roadway and the lake.  Now it is all built up with very expensive townhomes and pristine landscaping.  I circled the building twice to find a parking spot.  The interior was nearly unrecognizable, save for the floor to ceiling tempered glass windows.  The remodeling is impressive.  I suddenly felt so small and invisible.  I was overcome with memories that I hadn’t remembered in nearly a decade.  I thought of the kids who had passed through the classes I once taught there.  Some of those players now married and lifetimes away from the world of my current recollection.

After I left, I had to head back to my parents’ house.  I took the expressways as I would have done back then.  It was like I was driving those roads on autopilot, which is a strange thing considering that so much of the scenery has changed all along the roadside.  Shiny, new, mega structures now hug I-88 from Lisle to Warrenville.  Then there was the crazy Farnsworth exit traffic jam from the Premium Outlet Mall.  Taking Farnsworth north, I encountered the new construction at the Route 56 intersection, complete with the new WalMart.  I can’t believe how old I suddenly felt.  I am nothing like who I once dreamt my future self would be. 

Two voices spoke clearly to me today (and no, I don’t “hear” voices as in breaks from reality).  The first incident was when I was taking the very long, winding ramp from I-355 to I-88.  It said, “you definately need to move (as in leave Illinois) and go live the life you imagined” – the later part attributed to a quote magnet I have on my fridge.  The other voice occured even earlier than that.  “Oh my god!  It is ____ _____!”  The name omitted is that of a total blast from the past calling me out of nowhere. 

I always thought that one of my biggest “guy regrets” was from when I was a snotty 8th grader.  This super nice, super smart, super talented, and super shy boy who was a year older than me really, really liked me.  He even bought me a little freshwater pearl bracelet for my 14th birthday.  I blew him off and years later came to realize the error of my ways.  He blossomed into a wonderful, fascinating, and brillant man.  However, the more recent realization of yesterday was even more profound.

Friday night I had a dream about The University of Illinois, my alma mater.  I dreamt that I was back at the College of Art and Design and walking through a completely remodeled Art Building.  I was who I am now, but also there on a mission to defend the firing of a professor.  I can’t remember her name now, but it was clear as a bell in my dream.  She was being fired because she had some dibilitating disease that she had kept secret.  Once her sickness had been discovered, she was fired, since the school thought that she couldn’t do her job to the level it required.  Now, keeping in mind that this is a dream, there are several things to consider.

I was once told that all the characters in our dreams reflect various “parts” of ourselves.  If so, that is certainly significant…as well as obvious.  When I think of all the hope, idealism, and energy I possessed as an undergrad it is no wonder that I come back to that place.  So how strange is it that after I have a dream about U of I and the artistic aspect of my persona, which has been largly ignorred for far too long, that I would hear from a spectre of that past so completely out of the blue?  We have had yet to actually talk.

So this brings me full circle.  Even though this blog is about R.A., I am not R.A.  I am that poet-dreamer reeling in some vortex of struggle and paradox.  Yes, I am having a mid-life crisis and will probably get my period any day.  Yes, R.A. is a part of that.  But, no…no, no, no I can not be idle now.  I need to remember the promises I made to myself all those years ago.  I would always carve out a path of adventure, passion, and creativity in anything I may one-day do. 

So I’ll continue with the early wake-ups, the demanding pressure of my job, and the pain.  I’ll manage those daily set-backs that are a part of this condition, but I will not allow them to become scapegoats for laziness and self-pity.  It does suck to attempt fitness in the face of such frustration.  But face it I must.  So, early to bed, early to rise.  Tennis tomorrow and one step after another.

I believe my R.A. symptoms began over three years ago.  I was working out a lot.  I was a full time tennis pro and thus had the ability to schedule my days to include three hour visits to the gym.  I was in the best shape of my life.  I weighed less than I had weighed in a long, long time…I was 31.  Even so, my feet and my hands would ache.  I pawned it off on the amount of weight I was lifting…deadlifts, chin-ups, dumbbells, squats…of course, I should hurt.  There would be times where the pain would wake me up at night.  I admit, I used to take Excedrin P.M. to ensure a good night’s sleep.  In the summer of 2007 I was teaching a lot of tennis and feeling extremely sore at the end of a long day.  I went to see my doctor about the soreness and, after reviewing some bloodwork, I was given Synthroid for a low thyroid.  Supposedly, the soreness could be attributed to that.  Not entirely because of the thyroid, and in a large part based on my mental woes, I had ballooned up in weight that year too.  The weight gain and lack of daily fitness combined to create a worse situation.  Add on to that the stress of not having a job-job (that was the summer I transitioned out of full-time tennis with the hopes of teaching in the fall) – I had yet to land a job.

The fall of 2007 was crazy.  I still taught indoor tennis in order to maintain my health care plan, and then also coached a Varsity high school girls team.  I was subbing every day and working on the online job applications required as a pre-requisite for any teaching position these days.  I continued to stress eat and continued to pack on the pounds.  I spent New Year’s Eve ringing in a 2008 with my sister, her husband, and my niece promising myself it would be better.

In February 2008 I went to see a new doctor.  He was starting a practice that involved a more holistic approach to treatment.  I explained I was on Synthroid plus a whole bunch of other medications for depression, bipolar II, and anxiety.  That day, he stepped me down off of the mental meds, provided I kept up with my talk therapy sessions.  That has been pretty good so far, and I am very aware of shifts in my energy, focus, and mood.  I was also experiencing chest pain.  I could only describe it as pain on my breast bone that was hit or miss.  I had told him that I didn’t want to say anything other than I distinctly remember going in for a LEEP procedure in 2005 and having the anesthesiologist say that I had some irregular heart rhythm.  He ordered a series of tests.  I met with a cardiologist and had a Nuclear scan and adenisine stress test.

I couldn’t believe that I was 33 and a cardiac patient.  The nuclear stress test didn’t provide a clear read because too much of the radioactive isotope had settled into my liver, which then glowed too brightly to provide a clear read.  The adenisine test was negative…which is good.  I did feel like I was having a heart attack.  My blood pressure dropped and I could not breathe fast or deep enough to feel any relief.  As it turned out I had a LBBB.  In other words, the electronic impulses that signal the left side of my heart to work decided to take “the back roads” to deliver that signal rather then using “Main Street” or the bundle branch.  The cardiologist could not rule out 100% that this was only something congenital that I could live with, but, since I seemed most likely I agreed to stop testing.  The next step would have been an angiogram and then a potential pace maker if damage was detected.

The heart piece of the puzzle didn’t address my fatigue and soreness.  My GP doc wanted to address the inflammation.  My C-Reactive Protein levels were very high with each blood test.  I attempted to schedule an appointment with a well-known Rheumatologist who is also my mom’s doctor.  I figured it would be good for a mother and daughter to work with the same doctor.  There was a two month wait.  By now it was May.

I opted to see a different specialist.  My Rhuematologist is new to the U.S.  She is wonderful.  I met with her at the end of May.  She is part of an Orthopedic institute, so I was able to do the x-rays that day.  I did my blood tests that same day too.  Later that week she personally called me to say that I should come on in to discuss some treatment plans.  I was in that same week – the beginning of June 2008.

I had taught some tennis that morning and was driving through a sudden thunder storm to get to the office.  When I got there, her nurse took me back right away.  I have never had to wait to this day.  I was sitting in her office when she came in and greeted me warmly saying, “well it looks like I’ll be seeing you a lot more.”  She cracked open her laptop and reviewed the bloodwork with me.  She then showed me the x-rays and explained that my joints still looked pretty good and that she wants to keep them that way.  She wrote prescriptions for methotrexate tablets, plaquenil, folic acid, omeprezole, and salsalate.  She told me that we would wait to see if things improved and within thrity minutes I was scheduling my next appointment as an official Rheumatoid Arthritic.

I slopped out to my car and just sat in it for a few minutes listing to the rain pounding.  I cried.  I cried because I was so afraid that I was indeed becoming my mother (see the previous post if you are wondering why that thought is so upsetting).  I thought, “how in the hell am I going to be able to take care of myself?  My mom couldn’t do it and she was married and had a chain-smoking Swedish nanny doing housework?”  I was sad to think I’ve probably seen the best ever of my tennis in my past now.  I was mad that I hadn’t just kept in shape from a year and a half ago so that maybe I wouldn’t have kicked this off.  I was scared that I would feel pain and never get a guy to want to marry me since I would be so gimpy.  After a few sobs, I dailed up my Dad.  All I could say was, “well I have R.A. too, Dad.”  Then I cried.  He kept it together, like always, and said, “I’m so sorry.”  He reassured me that everything would be okay.  Then he had to go.

I went back home and just vegged out.  Rain in the summer means no work.  I read up on the medications and picked up my copy of The Kite Runner.  I like to delve into novels like that whenever I begin to feel sorry for myself.  Within no time, I was fine.  I would be fine.

I began taking the meds and felt like CRAP!  My rheumatologist cut out the Salsalate and my stomach was better.  Then, at the beginning of my new-job school year my rheumatologist changed me to injectibles since the methotrexate was making me feel like I had a stomach flu for the days following my weekly dose.  I’ve been giving myself shots since September…..sometimes.

I must admit that I often deny that I am in treatment for anything.  I hate the meds.  I really, really do.  I sometimes think that I’d rather tolerate the pain than deal with all the side effects.  So I do.  I wear metal magnetic wrist bracelets.  I don’t know if they are really doing anything, but I believe that they are.  I still wake up at night with pain.  I scorn the ThermaCare people because their hand wraps are awesome – AWESOME – but way, way, way too expensive for me.  If you are rich, go ahead and buy them.  Otherwise, I just make do with warm washcloths wrapped around my hands.  When it gets really bad I will dip into a supply of Tylonol 3 left over from my LEEP procedure.  I have only ever done this maybe five times since last summer.  Mostly, I just endure the pain.  I know that I can’t continue with my half-assed treatment for too long.  I do not want permanent joint damage and disfiguration.

So that is the story of the diagnosis.  I was watching Comedy Central and they had a comic on who has R.A.  I wish I could remember his name.  His hands are all twisted up.  He still tears it up.  That is motivational since he can do all that he does, and he is probably in a lot more pain than I am.

Tomorrow is Sunday.  I’ll be heading to the club to teach tennis for five hours.  Monday morning begins my 6:30 a.m. conditioning sessions with my high school boys team.  I’ll be making my next post in a week to say how the lifting is going.  Although I would normally do a shot tonight, I am not…I have felt like I have a flu and I don’t want to weaken my immune system right now.  So, it will be the heating pads tonight.

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The Sacred Balance by David Suzuki