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I remember watching the Julia Robert’s movie, Erin Brockovich and thinking how is it possible for that insurance guy to be able to go along with that memo/mandate from the powers that be and deny patients their health coverage?  Then, this past year the very same thing happened to my sister.  She suffers a congenital degrading disc thing in her back.  She is a fit, previously healthy 29 year old.  She had a discetomy in her lumber region when she was in high school.  Since then she has lived with continuous back pain.  She has seen specialists all over the Chicagoloand area.  She continues to suffer extreme pain.  Finally, her main specialist suggested a fusion.  This would be a major operation and require pre-authorization.  BCBS-IL denied her because she had not attempted other means of fixing the pain.  Her previous discetomy was too long ago to be considered a viable attempt at fixing a “degenerative” situation.  So, in December she had another discetomy and recovered to only a slight amount of relief.  I now blame BCBS-IL for basically turning my otherwise healthy younger sister into a near Vicodin addict.  She has been popping major pain pills for almost a year now.  And now, NOW, BCBS-IL finally approved the fusion surgery because the various specialists all determined that the discetomy was not a viable treatment option for a condition that will only continue to get worse with time – as the “degenerative” label so obviously suggests.  So, until the fusion surgery she will continue to pop the Vicodin just to grit and bear it.  She has talked to lawyers and sought an outside review of the whole situation, but her situation has been resolved with the scheduled date of the operation.  Now she faces an even more interesting situation since the “spinal” issue will flag her for future insurance plans and thus cost her more.  The method of how BCBS-IL handled her case is just one example that completely frustrated her (and our family).  It coincides with my own.

I was denied for Surgical Treatment for Morbid Obesity.  Let me update this whole thing because I am not HUGE, but I am obese by BMI standards and having R.A. makes working out something that helps to combat joint stiffness, but doesn’t necessary allow me to attack flab with the gusto that I once enjoyed so much.  I looked into this two summers ago and began jumping through all of the BCBS-IL hoops toward approval.  Two years ago I was also a cardiac patient as a congenital heart condition came to light at the same time as my diagnosis with R.A.  Actually it was the chest pain that got the whole health assessment ball rolling.  The cardiologist suggested a follow up appointment with a rheumatologist and the rest is history: LBBB, R.A., and hypothyroidism.  That was a fun year: 2008.  I wasn’t really THAT overweight in 2008, I had previously lost a lot of weight in 2007 due to my obsessive working out that I did to cope with mourning a death.  I just thought that I was sore and my family was worried that my massive weight loss, combined with pain, was something heart related – especially since our family has heart issues on both sides.  Anyway, as 2008 hit me with all the medical woes, the working out scaled back and almost stopped, with the rare exception here and there.

With the slide into unhealthiness and the mental shock of dealing with a diagnosis of R.A. – the same disease that has possessed my mom – I was not the most motivated patient when it came to hitting a treadmill or lifting weights.  If I did what I used to be able to do with such little effort, I would be so sore and so stiff that I could barely function the next day.  I wore magnetic bracelets, sought Eastern therapies, and began to discover what life with R.A. was really like.  I had been heavy, then fit, then fat, then less fat, then really fat, then just mushy….all my life going up and down the scales and clothing sizes.  All my life I had done one thing or another to address my body composition.  Finally, the rheumatologist suggested that I look into Lap Band.  Getting all and any extra body weight off my sore joints was hugely important.  So in 2008 I attended an informational meeting about it.  There seemed to be so many insurance hoops to clear just to get to the point where they could submit to insurance.  I didn’t have the time and I really didn’t have the money.  So I continued to attempt diets.  The bariatric doc from 2008 suggested that I see another doc who prescribed the OptiFast diet.  I’m not sure how many readers can ever, ever say that they sustained a long-lasting success using this p.o.s. plan.  I did the weekly weigh-ins, meetings, and extra vitamin shots (those weren’t free either).  This was all very expensive, but I sucked it up because it was a “non-surgical” treatment.  I starved on that program, had migraines, flare-ups, and all kinds of digestion problems.  So I stopped because I couldn’t continue to feel like crap from doing that.

I had acupuncture.  I had a permanent pin in my ear in order to “curb” my appetite.  By the way, the acupuncture was super helpful, and of course, since it was able to actually relieve my R.A. pain (I mean “relieve”) it was not covered by BCBS-IL, so I became poorer in my paying out of pocket for it and then had to give it up since I just couldn’t do it because of cost.  Nonetheless, I continued to gain weight and hurt.  The vicious spiral or R.A. and weight….it hurts to work out, so you don’t, so you get heavier, you hurt more, you become even more sedentary.  Last January (2010) I finally resolved to see out the bariatric surgery option, really as a last resort.  My surgeon said that I should have no problem getting it covered because of my BMI and the co-morbid condition of R.A.  Well, if only it was that easy.

I began to work with my new PCP who not only was the THIRD doc to explicitly recommend The South Beach Diet as part of my “medically supervised diet” but who also addressed the heart related issues that I needed to have monitored.  BCBS-IL paid for these monthly appointments, the mandated pulmonary and gastric testing, and other appointments with specialists as part of the pre-op process.  There was a sleep study and an upper-GI – these exams are by no means cheap, and BCBS-IL paid them.  Then, as the scheduled date for surgery approached I received a letter to say that my coverage was denied due to two reasons.

The first reason is crazy.  They claim that I have not documented that I am 18 or older.  I’m sorry – every doc’s note shows my birthdate on it…are they kidding????

The second reason states that I have not attempted appropriate non-surgical treatment!!!  What?!  Come on BCBS!  They want to see a medically supervised diet!  Didn’t I just do that?  But they wanted Weight Watchers, NurtiSystem, or Jenny Craig.  That is nuts!  The South Beach Diet was recommended by THREE different doctors.  Am I supposed to be doing a “medically supervised diet” that goes against what a medical practitioner says to do so that I can go to a strip mall store front and check in with a part-time customer service agent?  Give me a break, BCBS-IL!  You are purely playing a numbers game and denying me the procedure because you think that you can.

I’m going to fight!  I pulled together the 54 pages of the previous submittal and re-submitted with a cover letter that outlines the points of their contention.  My PCP wrote a letter stating the “medically supervised” part of the process.  I just heard today that BCBS-IL turned it down again.  The date was set for July 19th, is now pushed back to July 26th.  It looks like it might be pushed back to December now since they want me to do Weight Watchers.  I intend to get this in the calendar year 2010 since I don’t want to have to go through paying my deductible all over again – which is probably a factor that they have considered.  What a nasty numbers game!

So I surfed the web to see what other factors were going on with BCBS and was shocked to see what a large number of consumer complaints there are.  I’ll begin by saying that their pre-authorization procedures for my case (and for my sister) are ridiculous!  I can’t also begin to express my absolute and utter DISGUST at their automated phone system.  Their help line needs help.  They will not pass me along to anyone who can do more than simply restate what was in a letter or what the plan states.  They don’t HEAR you, they don’t LISTEN.  BCBS-IL will find any way it can to keep the BIG MONEY that it gets paid.  It is all about profits.  It is rather sad that people’s hard-earned cash gets funneled into this system that makes it impossible to get the coverage when it logically makes sense to provide it.  Hanging up coverage on a tiny technicality here or there, forcing my sister to have an operation that the specialists knew would not do a thing for her, just because the damn insurance company wanted to see that procedure first, is inhumane.  She suffered pain, loss of time from work and family, and a year of her young life to pain.  Their system, that she, me, you – all of us pretty much have to fund FAILED.

Just to make things all the more disgusting, try this.  Do a web search of BCBS CEO’s salaries.  Their salaries aren’t nearly as shocking as the “bonuses” and “payouts.”  There are fat-cat corporate dudes getting rich because of my monthly paycheck deductions.  Yet, I have to continue to jump through hoops for some company that can fly their execs around on Leer Jets!?  Unbelievable!

I’m going to the Illinois Insurance Reform Group’s site and seeing what my next steps are.  I’m going to ask BCBS-IL to do a peer-to-peer review.  I am also going to have an outside review too.  I’d love any thoughts/ideas/suggestions for how to get some actual answers from someone who can actually do something.

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It isn’t like this is a new idea.  I live in the Chicago suburbs.  Lately, we (as well as much of the Midwest) have been getting hammered by one severe storm after another.  These low pressure cycles sweep through in an aggressive rush rendering old oak trees a little lighter as wind gusts of up to 70 mph free the trees of their spindly bare branches.  There are a lot of older trees in the area that have these dead limbs.  I park my car under one that threatens to splinter with a strong blast.  Thus, I would probably need a new car.  The oak trees in my neighborhood range from about three stories to five stories tall.  It is impressive.  Like a skeletal system, these sturdy and strong wooden bodies endure the tribulations of the four seasons.  Like my skeletal system, severe weather, pushes them to suffer more than is the status quo.

I’m sure that these storms have more than arthritis patients aching.  I’ve heard that people with broken bones can sense the change in the weather too.  Apparently, as a low pressure boundary encroaches, once-broken bones may have an opportunity to expand more.  High pressure feels good because it helps to push that somewhat compromised bone together.  With RA, high pressure helps to press our swollen, aching, and compromised joints together.  Low pressure allows for the aches and pains to fire up.  This is how it was explained to me.  Looking at the sizes of the ganglion cysts on the top of my right foot seems to be confirming the hypothesis.

It was almost three weeks ago that I started a short-dose of prednisone to combat the bursitis I had developed from a rather innocuous nodule on my left achiles.  The bubble on my left heel was simple unsightly.  My feet, in general, are unsightly.  Nonetheless, I took the damn prednisone.  It is amazing how much better EVERYTHING felt.  Yes, not medicating with methotrexate and the other cocktail of RA drugs means that I’ve pretty much allowed myself to “tune out” the usual aches and pains of the eveyday.  But, what a difference about three days of prednisone made.  It was unbelievable!  I was running and jumping and chasing my two and a half year old niece around her swingset with ease.  Then the course of the prednisone was finished.

Within one week, and in combination with this powerful weather, I’ve felt like garbage.  I notice the achiness of my fingers and wrists.  I’ve seen the bubble reappear on my left heel and watching the crazy swelling of the larger bubbles on the top of my right foot.  RA said, “remember me?” and made its return loud and clear.  Yet, I am still holding my meds.  I saw my G.P. doc yesterday for a pre-op physical and he  was intrigued that I was so much more conscious of the RA pain.  We both agreed that it is a case of that adage: “It is sometimes easier to live with the devil you know, than the angel you have never met.”  I think that going without meds for more than a year now I was certainly accustomed it.  Sure, the weather would turn, and I would ache.  This is not something that a perfectly normal and healthy individual might not also feel.  This is just how it is.

What I find ironically and strangely symbolic is that as the weather rages, it sends me raging at the conscious acknowledgment that I do in fact have RA.  I think, not having popped pills and poked myself with syringes, it was kind of easy to forget that I had it.  Sure, those first steps in the morning always felt like I was walking on shards of broken glass, but by 10 a.m. I was doing fine.  I also wasn’t logging posts here, so I really didn’t dicuss or think about RA for weeks at a time.  I was too busy.  It seems like this past spring was one of the most mild ones I can remember in a long time.  That helps to the illusion of being RA free.  And since I’m not taking meds, I don’t see my rheumatologist – after all, what is the point?  She will say, “take this” and I’ll say, “no thank you.”

Anyway, the weather now reminds me that I indeed have this damn disease.  The bubbles (those ugly arthritic nodules) reminds me that I have it.  The searing joint pain, yes, hot and stinging – more than achy, reminds me too.  I had a dream last night where I was running (with great ease) through a beautiful park.  I decided that I wanted to see more and more of this park so I just kept on running.  The running was so smooth and I was breathing a healthy heavy breathing, not anything like the pre-heart-attack huffing and gasping I’d probably do if I tried this in real life.  The dream was so simple and lovely.  Then I woke up and had to go to the bathroom.  I was immediately frustrated by the pain from my feet.  There it was: reality.

I’ve been reading a lot lately.  Part of it is school related.  I’m trying to get a jump on planning for the fall.  I want to be AWESOME this coming school year!  In all of my reading, I can so easily “get behind” characters who rise to a challenge, attack it creatively, and achieve a level of success.  I see it happening in the pages and then step back to the real world.  Things are such a mess, besides my own personal health woes.  There is the oil disaster, the bankrupt state budgets (which I fear will negatively impact me next spring), the human rights sturggles that have always been a part of mankind but are thrown much more in our face due to the instant accessibility of our mainstream media, and probably most sad, this ever-more-pronounced sense that I feel in culture’s move away from heart, spirituality, faith.  It is a dog eat dog world out there, nature is venting her fury, and when it seems like masses of humans should be reaching out to one another with kind, open hearts – myself included – we tend to get more and more wrapped up in the rat race.  Sure there are exceptions, with certain individuals who can embody peace, generosity, and spiritual strength despite the storm…sure, even individuals can shift in and out of that mode too.  I consider myself that type.  Yet, I can’t help shaking this sense that we are all in the midst of a severe storm.  Although it may seem sunny at the moment, the storm is still raging in other ways.  It is in the worry I see carved into my dad’s wrinkles when he wonders how Medicare will sustain my mother once my dad retires from his firm three years from now?  If Medicare collapses or adjusts its benefits, will my parents have the retirement funds to make it?  It is in brother-in-law’s worry-laiden pondering as he fears that the collapse of the state budget will mean deep, deep public education cuts.  As a music teacher, he fears for the worst, especially given his Masters + 30 pay scale credentials will mean fewer schools would consider him.  God, such sad irony that a budget determines something like the weeding-out process of candidates.  My sister, knowing that this is the case, wonders how she can remain a stay-at-home mom and knows that a newer home with the additional bedroom she would need for the next baby they want is no longer in the cards at this time.  The storm is too unpredictable to think even that close-range into the future.  And, what happens if I get riffed?  Will I be able to afford Cobra?  How long would it take me to find a job given the sheer numbers of potentially out of work teachers when the projections of next year’s cuts combine with the realities of the cuts from this year?  It is terribly messy.  I wonder what can be done?  Where will the fixes come from?  Didn’t I too believe in the Hope that Obama seemed to embody?  I’m certainly not against him.  I just can’t imagine anyone short of a legit messiah being able to tackle the problems of this country, let alone the world, and being able to make a signigicant change without being able to conjure a few miracles.  At times, the suffering, the storms, the destruction and dysfunction seems so much that I can’t help to believe we are in some sort of “end of days.”  If the Mayan calendar has it right, I just might not need to worry about paying back some of my credit card debt.

How did I ever get so off topic?  Goodness.  On the flip side of this storm idea is that there is always “the calm after the storm,” which implies that to know such calm we must know the storm.  In order to bring this back to RA, I will suggest that my dream of carefree running suggests the possibility that I can achive it.  When my culture, my own family’s struggles, appear to be rather omninous, I can choose to believe in the hope of my own personal health.  Maybe the advancement of medicine and technology will mean that my RA is not so debilitating as it has been for my mom.  Maybe it means that should I be blessed with my own children, there will someday be a treatment to eliminate this gene from their genetic make-up.  Maybe, it is just the simple hope that I will experience that calm after the storm because I can, once again, trick my mind into thinking about something else and I’ll “forget” the pain.  Whatever the case, I am not an ostrich hiding my head in the sand because there is a storm raging at this moment.  I am aware.  I can sense it.  And, I can always hope.

“With the care that it receives from its mother each infant is able to have a personal existence, and so begins to build up what might be called a continuity of being. On the basis of this continuity of being the inherited potential gradually develops into an individual infant. If maternal care is not good enough then the infant does not really come into existence, since there is no continuity of being; instead the personality becomes built on the basis of reactions to environmental impingement.” (from “The Theory of the Parent-Infant Relationship,” 1960)

“Maternal failures produce phases of reaction to impingement and these reactions interrupt the ‘going on being’ of the infant. An excess of this reacting produces not frustration but a threat of annihilation. This in my view is a very real primitive anxiety, long antedating any anxiety taht includes the word death in its description.” (from “Primary Maternal Preoccupation,” 1956)

D. W. WINNICOTT

Thanks to Winnicott and the whole transition object idea, I think that I have some semblance of an understanding as to what went on in my own infancy.  My mom, dad, and grandmother complete this tale as they have filled in the blanks over the years.  Let me begin.

My parents attended the same high school but one year apart.  They grew up in southern Illinois and went to a large high school, so they didn’t know each other.  My dad was, and God bless him for it still, a nerd.  My mom was a socialite.  My dad’s parents were blue-collar working class types.  My mom’s parents were more middle-class merchants.  The possibility of these two ever getting married was probably some bookie’s worst odds nightmare.  And yet…. My dad got into The University of Illinois’ College of Engineering…M.E. (those of you who know engi-nerding know what that means, eh?).  My mom attended junior college at first, and then later transferred to UIUC for her Education degree (yeah, the apple didn’t fall far from the tree on that one either, although I tried, tried, tried to do other careers less kid-related).  My mom did all that sorority stuff and my dad wore glasses and carried a slide calculator.  This sounds so cliche doesn’t it?

My parents met from sharing a ride from U of I to their hometown together.  My mom must have seen something about my dad and that was it.  She dumped her boyfriend, made sure my dad knew she was interested, and the rest is ball and chain – forty years ago this summer.  This was just as the 60’s were wrapping up and the 70’s were setting in.  My dad took a job requiring them to eventually settle in the Chicago burbs, which gave my mom the opportunity to teach school in a nearby town to where I eventually grew up.  She did this very, very briefly (three years maybe) and then once I was on the schedule, she became the stay-at-home-housewife-super-mom (that my “super mom” middle sister is now).  My parents designed and built the same home that they still have today.  They had a dog and a baby on the way.  Both of their parents lived five and a half hours away and the one and only aunt I would have was a busy singleton living in the city.  Their world was small, neat, and tidy – just like how the house used to be.

I am told that I was “right on time” with my due date.  The labor was four hours long in the fourth month of the year at four in the morning.  Other than these details, the number four has never been a special number to me.  My mom claims that the doctor who delivered me was drunk after partying late into the night following a day of golfing.  Whatever the case, drunk doctor, promptness, whatever…I was born a healthy baby.  My parents were overjoyed and their lives changed – as change is the ever-present factor of life.  They brought me home to the house on the lightly wooded lot near a park.  My mother tells me that she knew right away that something was wrong with her.  She claimed to be overwhelmed by sadness while the rest of the family was basking in joy.  She couldn’t ever hold me and soothe me.  I screamed and pushed and fought against her touch.  Although I nursed, she claims it was always a “power struggle” and that I was never gentle.  I spent my days screaming fitfully, driving her crazy, and then when my dad would return home, I would coo and giggle and fall asleep on his stomach while he crashed on the couch.  This pattern continued, according to my mom, and she felt terrified by the madness of her situation, her mind, the torture of being left along with me all day long.  She asked my dad if she could “see someone.”  He said no.  Who knows the real way that conversation went down, but my guess is she didn’t divulge the severity of the situation and my dad, not having had any relatives ever seek mental health treatment, didn’t understand or ever rationalize that a woman who should be so grateful for a healthy newborn, a lovely new home, and the freedom to stay in it and raise said baby could not be happy.  Nonetheless, my mom’s postpartum depression deepened.  Her resentment at me for being a sweet baby each day my dad came home only fueled this negative experience all the more.  There is actually a picture of me pulling myself up, even before I could walk, to look out the window at the driveway waiting for my dad to come home.  I think I’ve even remembered this at some point because I did this for a couple of years and later saw my youngest sister do the exact same thing, although it was a different dog posing alongside in her picture seven years later.

Psychology claims that children can not make memories prior to around the age of three.  Yet, despite my being able to give an accurate narrative of those three precious years, there is something profound that must have taken place because I am 100% certain that the mother-child bond was not established and never really has been in all the years since.  I know that I had my transitional object (still do, and yes I am in my mid-thirties)…Baby Bear.  “Baby” went everywhere with me.  I had a cute little nursery that both of my parents worked so lovingly on prior to my arrival.  There was a favorite blanket and another stuffed animal (long gone now) and these things, plus my books, were my world.  My mom read books too – on how to raise the perfect kid.  The early 70’s were full of some hippie-type child rearing theories, and I was guinea pig for them all.  There was this idea that if I was constantly crying that I should be left along to “cry it out.”   My sister, the “super mom,” would never, never do that for, if her baby cries, then there is something wrong.  Yet, I was left to cry and scream, and grip the railings of my crib.  Maybe there was some level of fear that I experienced when the one parent that I did bond with, my dad, left the house to go to work.  I was left with a mom who must have been such a bundle of mental woes that even a newborn could sense it.  This may be where some of the anger started.  I’m sure that it is.

When I was three, my sister was born.  Her delivery was early, funny because she spent the rest of her life arriving to things late.  If we were two of the Seven Dwarfs I’d be Doc and she would be Sleepy.  Being premature, she was tiny, frail, sickly, and in need of constant attention.  She bonded with my mom and I must have grown more resentful at yet another thing that upset my mojo.  I guess feeling as if I’ve had to always fight for the limelight became a neurosis of mine even way back then.  With two kids, things actually went along pretty well.  My sister and I got along for the most part and were highly complementary.  Where I was tough and messy and wild, she was cute and girlie and quiet.  And for almost four years we enjoyed this family of four.  My mom room-mothered at my Elementary school and still managed to play her regular tennis games and go for her morning jogs before whipping up breakfast.  The house continued to come along as newer furniture and appliances were added to the home.  My dad continued to enjoy the success of the growing economy.  We had Star Wars.

This brings me back to the beginning of my previous entry to when my mom first got “sick” – the pregnancy of my youngest sister.  Her delayed delivery in 1983, which was when my Grandma took me to see Return of the Jedi.  I can correlate the end of my happy childhood existence with the completion of the original trilogy.  My mom got sick, the diagnosis came – along with a chain-smoking Swedish au pair – and the family’s life was changed forever.

Again, there is something to be said for the level of stress my mom must have been under in the years leading up to RA.  I have a friend, my age, who also experienced a tragic stressful event in her young life and then developed her first flare up.  If stress is in fact some major contributor, then I feel sorry for my mom’s situation.  Yet, the anger is there too since a nine year old kid could not possibly understand these concepts then.  All that kid, and the toddler, and the infant versions of me knew was that I would be left alone to cry my saline tears into “Baby” and all along I could never find words, any kind of language, for that type of despair.  Now, even as I understand the forces in play, I feel absolutely clinical about it.  Now, as I make an adult life for myself as a patient with the same damn disease, I feel safe in knowing how different everything is.  I am not the past.  I am not my mom, even though physical appearance is uncanny.  I would love for D.W. or any of his disciples to take a crack at this dynamic and let me know if I’ve done a “good enough” job of developing.  If I tie my development into an adult to Winnicott’s theories, than one must wonder how successful development could be possible.

If I believe in the magic of George Lucas’s long, long ago in a galaxy far, far away, then maybe I was just tapping into the force and claiming my arrival into adulthood as a Jedi who has embraced the good in everything; while my Mom – – I mean, my “RA Mom” – – represents Darth Vadar’s slide into the Dark Side (of RA in this case).  There is still some good in her, but, she is ruled by the suffering of her condition, meaning that I have to take that burried goodness on faith and believe that it is there.  As glib as that analysis might seem, I promise that I can show how this turning to the Dark Side has been so very complete.  Again, I do not mean to sound mean.  Certainly I am bitter; RA took my mom from me when I was a little kid.  However, just like Vadar was Skywalker’s father, those two chose different paths through life.  While RA is my mom’s entire world, it doen’t own me.  Sometimes I feel that writing this blog tends to refute that claim, but I write because it helps to free me of the thoughts that might otherwise burden me for far to long.  Thus, I will elaborate on this story, the more current part, as I continue this blog.  But that will be a leap into the more recent past and part of a different post.

I feel as if this topic is a whole blog unto itself.  Anger.  Growing up with an “RA Mom” and then having it myself I feel as if I’m an absolute “expert” when it comes to a topic that I don’t think has enough exposure.  Sure, being diagnosed with a degenerative disease that causes almost daily complications ranging from pain, limitations, the side effects of meds, the regret of not doing something right with your health way back when….as if that would make a difference – getting RA is all in the genes, right?  Well, let’s face it: for the most part, RA flat out sucks for the sufferer.  But what about the immediate circle of support and/or the dependents of the sufferer?  Sometimes, it might suck more.

Take my family for example.  From the outside we appear to have a pretty cozy life.  My parents have been married forty years this July.  My two younger sisters seem happy.  The middle sis, “the super mom”, married her high school sweetheart.  They live what appears to be in domestic bliss with their two and a half year old daughter.  My youngest sis, “the urban chick”, lives with her long-time boyfriend in the city and works an exciting job downtown.  We rarely see her because the idea of coming to the suburbs bores her, but she confesses that coming home (home where she grew up in the house my parents built and still live in) is simply too hard because it is a sad place.  My Dad, at 63 years old, still has to drag himself to a tough, competitive, and ever-less-lucrative sales job each day.  He hopes and prays that he will make it another three years because he needs to keep the firm’s health insurance since even one year without company health care would bankrupt his hard-earned retirement account.  I believe it is the imbalance my sisters and I perceive in the mom-dad dynamic that is the beginning of some of our anger.

My mom was diagnosed just after my youngest sister’s birth.  She was a big, big baby and missed her due date by a week or so because she was so content hanging out in the womb.  My mom’s first rheumatologist theorized that the stress of that pregnancy kicked off my mom’s RA.  My mom contends that she had “issues” that she claims were symptoms from earlier than that.  Whatever the case, I was in third grade, the future “super mom” was in pre-school, and the “urban chick” was a newborn.  Any parent could certainly attest to the handful that age spread represents.  We were that typical Midwestern suburban household: dog, yard of green grass, two-story house, two cars (one a station wagon), and attended church as a family (even though we had to be dragged there kicking and screaming).  My world, without a doubt, was perfectly cozy.  I was also nine years old, so what should I really know of struggle at such a tender, young age?  Then, when I was still so young that a thunder-storm had me grabbing a blanket and a teddy bear to sleep on the hallway floor outside my parents’ bedroom, my Mom “went away.”  I later found out that she had a mental breakdown.  The pressure of not “feeling well” collided with all of the postpartum issues that she had with the first two babies, and she had to be hospitalized.  She had become dysfunctional.  My Dad brought up his parents, and for a while, things were cozy again despite our not having mom around.

My mom’s health continued to deteriorate in 1983.  The doctors didn’t know what was physically wrong with her.  She began the lifestyle she continues today: a wide array of doctor’s appointments each week, daily mega-doses of medications, daytime sleeping, nighttime restlessness, constant veil of sadness-frustration-anger drawn over fogged up eyes, a move away from her faith, and the way too much information provided to her circle of friends’ simple greetings, “how are you?”  Even as a little kid I could see the way her friends really didn’t expect her highly detailed answer to such a simple question that only needed a “fine.”  My mom, somehow unaware of the negative Debbie-downer factor of rambling off how terrible everything was, what specialist she was seeing next, the amount of pills she takes, the way that she has to wear the latest immobilizer, sling, boot – whatever….the answer that no one, even a good friend, really wants to hear on a Sunday morning after a nice mass with a positive message being so quickly obliterated by this Vicodin vampire of personal suffering….well, my mom had a way of always “going there.”  Thus began our (and I speak on behalf of my two sisters, although, my being the oldest, meant that I was the most aware of it) anger.  It wasn’t long after my mom’s diagnosis and subsequent slide into medical misery that family friends suggested my middle sis and I get family counseling.  Why in the world would a 9-10 year old and 6-7 year old need to hit the couch?  Why?  Because we began “acting out”.

I’ve studied a little child psych, as part of my education course work.  I can tell you that a lot of “milestone” parts of a healthy childhood were compromised.  In all, I’ve probably spent as much time “on the couch” with various psychologists, psychiatrists, therapists, counselors, and social workers as I’ve spent conquering four years of college classes.  I was bounced around because I was: intense, depressed, angry, withdrawn, aggressive, and lacking healthy peer relation skills.  I’m not sure how someone who only saw me sitting on the couch got these opinions since they didn’t see me at school (where I was HAPPY to be) and they didn’t hear it from me because I didn’t talk, or when I did, I talked in deliberate circles…mostly out of spite for having to be there as a kid.  Later, when I was paying for the therapy to clean up the therapy that did nothing for me as kid, this attitude was different.

By the way I’ve just typed a little over 1,000 words and my hands are killing me.  But I’ll power on…..
If you are still reading along, let me now mention that this will not go too much longer.  I like to keep things “digestible” and this post is already getting too long.

So, the first effect of my mom’s RA was to introduce anger, frustration, and sadness into our family’s world.  This was in no way, her fault.  She didn’t wake up and say, “Screw this, I’m going to shake it up.” She slipped, very quickly, into a medical existence that made being a mom something that was a part-time job for her.  She showed up when she could, which wasn’t often.  When she did, forget that I just sang a solo…all the attention was on her with the crutch and my friends’ parents asking “what happened?” or “how are you?” and my mom lurching into the long-winded, depressing, negative accounts of her woes.  As a kid, I was embarrassed, jealous, resentful.  As I kid I saw that my mom was sick, had been gone in a hospital where we didn’t have to deal with all the turmoil – the doctors and nurses did; yet, later she was still sick so why were we now burdened by it?  My dad worked longer and harder to pay the bills.  Vacations were fewer and farther between.  My friends went places; we didn’t.  My friends parents were fun to be around; mine was off-putting.  My friends….and so the obvious comparisons ensued and I was an angry kid.  I was not angry at RA; I was angry at my mom who had become her RA.

Shortly after she was, in all reality, an invalid, my dad arranged for a Swedish au pair.  We were under the care of a complete, although nice, stranger.  It is also at this point that my memory fades.  I have been told that because I was so angry, sad, and frustrated that I was unable to allow my brain to function in laying down memory.  I simply recognize this fuzziness as some sort of psychological-wound-dash-coping-mechanism.  I can tell, looking at pictures, that I continued to function.  I played soccer, tennis, and did swimming.  I was a solid student and cared about doing well in school.  I had friends.  I participated in activities.  I was just a not-too-nice big sister.  I wanted my alone time, withdrawing into my own world of reading, writing, and daydreaming.  Tensions between my mom and me were huge and we would have explosive fights.  She, being heavily dosed, would sometimes say some pretty horrible things to me.  I would get grounded to my room.  Since I was so much in the role of adversary, my sis took up the role of ally.  The future “super mom” would mother my youngest sister and tend to my mom who would be crashed out on the sofa.  The Swedish au pair washed our laundry, ran errands to get groceries, and whipped up an ever-original batch of casseroles.  My dad would come home late from work, exhausted, and be swept up into the conversations of what next complicated medical tests and procedures my mom needed to pursue based on some specialist’s suggestion or new complication.

This is how I remember it.  My youngest sister doesn’t remember any of this…she is lucky.  She didn’t have to essentially “mourn the death” of her once healthy, happy, active, and beautiful mom.  The mom of my very early childhood “died” in the mid-80’s.  The woman who still retains that title to this day has never once re-captured the essence of who she used to be.  This “RA Mommy” is something entirely different from the woman my dad married, the woman who gave birth to my sisters and me, to the daughter she was to her distant parents, to the sister she was to my now deceased aunt.  She became the disease.  Once RA figured out the power of its possession, it then invited other friends to join it in my mom’s body…and soon the medical misfits of Osteoporosis, Fibromyalgia, Degenerative Discs, skin disorders, vision and hearing problems, muscle strains and sprains….all took hold too.  With this came the additional and more frequent bouts of mental woes.  Our family suffered.  How could we not?

I know that each and every case of RA is different.  Prior to my diagnosis in 2008 (not a fun day as I recall it), I had traveled the world and seen third world countries’ definitions of “suffering”.  I had practiced meditation and read up on Buddhism’s principles of “suffering”.  I had spent a lot of adult time and my own money in therapy trying to resolve some of the anger that I was still carrying from my childhood “suffering”.

I am always consciously aware that I don’t “suffer” from RA.  I have RA.  I have job, blonde hair, ten fingers and ten toes, and a Jeep.  These are facts….these things are not me.  Being an English teacher, I am very aware of the connotation of words.  I chose these and the words that define me very carefully.  At 1,851 words for this entry now my hands ache.  They would still ache if I wasn’t typing.  I can elect to notice this or not and to give it power over me or not.  I can stop thinking about it as easily as I start to think about what to get my dad for Father’s Day….something of a holy day in our family… a day to honor our saintly father, who has sacrificed so so so much for his family.

I think that I’ve written enough for now.  There is more to be told of this topic.  Other RA-diagnosed people deal with their circumstances differently.  Some hold meds, like me; some medicate but have different “cocktails” of meds that produce widely different results.  Yet, the one thing that might be the same across the board, is that the parents, husbands, wives, daughters, sons, aunts, uncles, co-workers, tennis partners, life-long confidants, book club circles are affected too…RA touches their worlds.  “How are things?” becomes a loaded question and feeling helpless to do much for this person with the hot, swollen joints introduces something awkward into the relationship.  For me, it was mostly anger.  For others, it could be a vast array of other emotions….but emotions that might not otherwise be there because of RA’s complications are now there.  Anyone who knows someone who has this disease, then at some level, knows this.  RA is not merely about those who have it, but those who are bonded to those who have it too.  This is a truth.  This is the focus of my next few posts.

Hello reader (or hopefully readers):

I apologize for the long absence.  I’ve been a busy school teacher/tennis coach.  School has ended which means I will be back blogging.  I have a lot of stuff to cover.

1. I’ve been holding my meds for over a year now and seem to be okay.

2. I’m having gastric bypass in a month and I’m freaking out.

3. I’m going to update the whole mom story soon.  Remember she was diagnosed with R.A. in 1983.

4. I am going to explore the effects of Eastern medicine on treating chronic pain.

5. I have some funny, funny stories about me and my arthritis gloves at school.

Anyway, I will be back.  It is my goal to be a loquacious blogger this summer.  I have much, much, much to share!

Thanks!

So my week of spa treatments continues…

Thermojet.  This is an infrared body wrap system that is supposed to “melt” body fat.  I can’t say whether or not I’m a believer, but the heat does feel really good on my sore back and my crazy sore legs.  The process involves wrapping the core and the thighs in these silicon pads that then deliver infrared heat deep into the tissue.  The elevated temperature is supposed to cause a metabolic process whereby your fat cells react by shrinking.  I’ve looked on the Thermojet website and I think that if it was such an easy fix that more people would be using it.  I’m currently paying $75 per treatment and I’ve had 2.  I took my measurements at the beginning of my week and can say that there is some truth in the dropping of inches…that is the biggest claim – drop inches (I don’t know how that equates to pounds).  I’ve lost 1″ from bust, waist, hips, and thighs.  Of course, I sweat like crazy so maybe it is water weight.  I think I’ll know better with a few more wraps.  The positive benefits of heat, drinking more water, and spending 45 minutes just chilling out are certainly part of this treatment.

Reiki.  I will be having my 2nd Reiki treatment soon.  Although, again, there are a lot of skeptics that would say this is a bunch of hooey, I can’t help but think that there is something to be explored here.  Reiki is not a massage – as I thought it was.  Reiki involves a therapist using hand positions above the client’s body at points along the Chakras.  As the therapist (healer) does this, they sense and treat the Chi as it relates to that particular chakra.  After my experiences with acupuncture, this is strikingly similar.  You don’t need to undress for this treatment.  It lasts an hour and the therapist provided me with some interesting feedback following the session.  I didn’t provide her with anything more than a basic answer to a question before we started.  She asked me, “what do you want to achieve with this session?”  I said, “I’m not really sure.  I have physical ailments, which I imagine a lot of people do too.  I guess I’m just willing to see what you think.”  She seemed fine with that and then told me what she was going to do with putting her hands above the different places of my body.  She said that she often has people fall asleep and that is fine.  She also said some people claim they feel strange: lightweight, deeply relaxed, or warm.  She also said that clients have heard a humming sound or have seen lights.  So following the prep, I laid back and closed my eyes.  At first I had a bunch of racing thoughts.  I was thinking about how I could try to focus on random stuff so that I wasn’t falling under the power of suggestion.  I started to think about how much this was going to cost.  I thought about other things I had spent money on and then worried about money a little.  Then I thought about my grandma being sick and how she must feel alone.  I thought that I should be a better granddaughter.  I thought about how much stuff I need to do and started making lists in my head.  All of this thinking sped through my mind until I felt a pulling sensation in my jaw.  It felt like an ache – as if I had just worked really hard of chewing old gum.  So I thought about whether or not I had noticed that feeling at all and if that was from the healer’s hands being above my head.  Right as I was feeling that, she moved her hands to my ears.  Her hands did feel warm and once she switch to my ears my jaw didn’t feel like anything anymore.  Then I was just thinking about the warmth on my ears and how it felt good.  She stayed there a while and then moved to my eyes.  Again, her hands were warm.  At this point I just checked out.  That is, I started to feel very floaty – as if I could snap out of my body if I wanted to.  Then I thought that I could feel a massaging sensation, but not physically.  It was as if I could sense her cradling the energy and it was just held there above my physical body.  Now, at this point, I started to doubt myself.  I thought, “oh dang, I’m making this up and maybe I am asleep and just dreaming this.”  There was some drilling and hammering going on nearby and I felt my concentration wander to those sounds.  However, that warm, massaging, vibrating sensation continued.  Then I had some thoughts about how I’ve felt vertigo when I’ve meditated in the past.  I thought that is was strange how I wasn’t feeling that now.  I felt grounded and safe.  Also, with acupuncture, I could remember feeling so cold – sometimes so cold that I was physically shivering.  With this, I was warm and content.  The therapist’s last hand position was just below my feet.  It felt like something was draining from me.  I’m not sure if that was power of suggestion or not.  I kind of imagined that this floating feeling settled back into my body on the table and then that the bottoms of my heels were like the drains of a bathtub and that the plug had been pulled and the water was slowly and gently emptying.

When the therapist told me to open my eyes I felt extremely calm.  I just remained still.  I’ll try to recapture what she said.  She stood by the side of the table and said, “well that was very interesting.”  It didn’t look like she was searching to make anything up.  She continued, “I think that you just wanted to achieve calm and peace.  When I put my hands by your throat the angels told me that you have a beautiful voice.  That means that it isn’t just like singing, it is that what you say is beautiful and that you should keep sharing your words because they are good.  Your heart charkra, gave me an impression.  I saw an old man in glasses and dressed to go fishing.  Does that mean anything?”  I said no.  “Hmmmm, well he means something to me.  He reminds me of a person who was always, ‘me, me, me.’  When you are in a relationship it is supposed to be fifty fifty.  This man that I know was not like that, he was mean.  Yes, he represents a mean man.  Maybe it is like that for your heart.  You had someone who was ‘me, me, me’ and it hurt you.  That is just the impression I get.  I also tried to ask for more information, I wanted the angels to show me a clearer picture and they said, ‘no. that we are too connected to have anything more revealed.’  Sometimes we come across people that we might have been connected to in previous lives or in some other sense of energy.  I just don’t know.  When I was over your solar plexus, here-”  She gestured to my upper abs.  ” -well, I’ve never sensed so much strength.  You are a very, very strong person.  You have so much strength – you don’t even know.  You only see like this-” she gestured a waving motion up and down infront of her.  ” -you don’t see how beautiful you are inside.  You are very wonderful and the angels said that you need to try and see the miracles that are right infront of your nose.  Your strength is yellow energy, golden.  You can trust that you are on the right path and that you should follow it.”  I said, I don’t even know what path I’m on.  She replied, “you don’t need to know.  Just trust that you are on it.  When I was here-” she gestured to an area on my lower abs about even with my hips. ” -I sensed a lot of creativity.  I also saw a lot of orange.  But, yes, much creativity.  You are also very smart, and this is a gift.”  I don’t remember what she said until the last past with my feet.  “I usually try to see people are birds or trees.  With you, I saw a huge tree – huge.  Again, this tree is strong.  But the roots do not run down deep.  It is like the roots are spreading wide to try and explore everything all around, like popping up to see, ‘what is this about?  what is over there?’  You are only a little grounded and need to work on that.  It isn’t about knowing more, but about trusting and feeling like the steps you take here on earth are safe and solid.  With you, I want to get your roots deeper into the earth.  I also got a vision of you in Scotland or Ireland.  You were in a place that was very old, very peaceful, and very green.  Does this mean anything?”  I said that I didn’t think so.  I’m not Scottish or Irish.  “Hmmm, well I saw you in this place and you were very happy.”  Honestly, as she mentioned this my mind went to the most recent film of “Pride & Prejudice” where Kiera Knightly is poised at the edge of a rocky precipice in England.  She stands as this strong, independent female as the wind whips through her dress.  She is beautiful and strong and very inspirational in this shot.  It is one of my favorite scenes ever, and I own the film and always get goose bumps when I watch that shot.  In that shot, she makes being alone a symbol of strength.  It is funny that I thought of that so vividly.  I told her about the different sensations that I felt and that as much as I didn’t want to think I was feeling anything that I can’t deny that I did.  She said that sometimes people are in tune with that energy and that is probably the case here.  She said I need to drink a lot of water so that I could continue to allow the treatment to have an effect.  And that was it.  The rest of the weekend included a lot of what would have been stressful stuff, but I rode out those events with a calm, gracious, and patient attitude.  It was actually very out of character for me.  And, more importantly, where I had the opportunity to be a good granddaughter, I was.  That is too coincidental for me not to mention.

Monday morning I saw my doctor.  He reviewed my bloodwork and my thyroid is barely functioning.  I guess that explains a lot: being so tired, being achy, my crazy menstrual cycle.  So I have a follow up on in a bit and I really hope that I start getting my energy up and my mind in gear for the start of the school year.

Tuesday was spa day, again.  I used another gift card to get a manicure and a pedicure at the Coldwater Creek Spa.  Oh my goodness was that a nice treat.  My feet haven’t looked so cute in a long, long time.  The nail tech was super nice and tucked me into this awesome reclining chair.  The pedicure was heavenly.  It felt so good to have warm, soft feet.  The different creams and lotions smelled so good.  After the pedicure, I had my hands done.  The result is that I do feel prettier.  I didn’t purchase any product since I simply wanted to use the gift card and not spend any money (except for the tip, of course).  This would have been an expensive day had it been my money.  I know that I can’t afford to keep up the nice toes, so I find myself just looking at them a lot and liking the shiny, pink polish.

Today I spoke with a specialist in Ayurvedic Yoga massage.  It combined deep breathing, yoga poses, stretching, and massage.  I am going to meet with her in person soon and see what treatments she might suggest.  Although since might seem over the top, remember I am searching for Eastern-influenced and based methods to combat my R.A. and to make progress toward a healthier lifestyle.  The yoga piece seems to be really important as I know that it is used with seniors to promote joint health.  I’m not a senior, but my yoga ability level is.  I’m excited to try doing yoga again since, from what I remember, I loved how good doing yoga felt.  I need to try my best to leave my frustration at the door.  I’m too out of shape now to hold a pose for long, and just like working out in the mornings, I get mad at myself for allowing such a drastic backslide.  So, now I need to clean.  My back is feeling better and I have neglected housework for far too long.

My ambitious nature is truly a double-edged sword.  In most cases, my drive helps me to launch into things with vigor.  However, when I do run full throttle, it is hard to hit the brakes.  There have been many instances where only some sort of outside force will become that figurative brick wall that I hit head on – which then, finally, does stop me…dead in my tracks.

This past Monday I went back into the gym and hit it…hard.  I was only twenty minutes into an hour workout when I could already feel my very unused muscles screaming at me.  My hamstrings were cramping up, I could feel that uncomfortable tension behind my kneecaps and up at the base of my butt.  Then my quads started to burn.  At about forty minutes in I dared to attempt two sets of 20 reps of a kettlebell thing.  I’ve never done this type of lift/swing thing and it looked simple enough: do a half squat, grip the thing, explode up in the legs sending the weight up in front of my chest, then use my core and legs to counter the weight as it swings back down, use momentum to repeat the swing in a steady rhythm.  This might have been doable had my legs not already been trashed.  Since they were, I think that I used my lower back to produce the lift and the swing.  This was a terrible, terrible move.  After my first set I could feel a sharp shooting pain seizing up.  Since I was trying to be “tough” I did not listen to this warning sign.  I just powered through in pain.

Pain is something that RA folks just deal with.  Even with medications, pain is still ever present and a part of life.  I’ve been dealing with pain and other health things for so long that I just didn’t believe this back pain to be any different.  So after a little rest I did the second set of the kettlebell lifts.  Even though I could feel the sting of a sharp pain in the first move, I clenched my teeth and gutted out 19 more.  I knew that I would be sore, sure, I’ve done that before where I killed my hammies and could barely stand up a couple of hours later.  I just figured it would be like that.  So, I cooled off with some very painful stretches on the floor and then went to grab my bag from the locker and head off to teach some tennis.

As I lifted my bag up, I couldn’t even clear my head to sling the strap across my shoulder.  The pain was electric, hot, and frightening.  I dragged myself to my car and lumbered to get into the seat.  Then as I was driving, I was stuck in traffic behind a truck that had caught fire.  Thus, I  ended up sitting for close to 40 minutes before I arrived at the tennis courts.  As I had been sitting in the car I could feel my back and my legs tightening up.  I turned off the engine and cringed as I tried to open the door.  My legs were so heavy and I had to use my arms to help swing them out of the car.  As I tried to stand up, I felt something twinge – slip – pinch – wobble…it hurt…and then it didn’t stop hurting.  There was no way I could stand up fully.  I was trapped at a high school parking lot with my tennis classes about to start across the street.  Fantastic!

That was Monday morning.  I quickly got my classes covered with other coaches and went home to begin ice therapy and I-Be_Hurtings (ibuprofen)…800 Mg geltabs.  I popped the Advil and hobbled to the floor.  I thought that I was hurting pretty bad for DOMS (delayed onset muscle soreness – have had it before with legs and just thought that this was an extreme case).  I didn’t sleep as the pain just continued to get worse.  So I phoned my sister who had some pretty bad back issues a while back.  She agreed I should just keep icing it and see if it gets better.  It got worse.  Later that night I couldn’t move without clinging to a wall, countertop, on the bottom of my putter as I used it like a cane.

For three days I had endured and only ever felt a little okay when I was sitting still with an ice pack in place.  Finally, I got to the doc’s today.  Herniated disc.  No big shock there.  So he wants me to take prednisone.  Ahhhhh, no!  He also said no lifting…terrific, there goes my trying to get in some extra hardcore workouts before the crazy schedule of school started again.  Now, I’m taking even more steps away from fitness because I let my ambition get the best of me.

I will listen to my doctor about not lifting, since I can’t anyway.  He suggested that I walk in the pool in order to keep mobile.  I’ll listen and do that too.  But I’m still not so sure about taking the roids.  I just don’t like the thought of that.  So, even though not listening to my body got me into trouble in the first place, I’m still not sure that I will take the prescription.  In any case, I pushed too hard and now I’m paying for it.

“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.

Time keeps on slippin’, slippin’, slippin’ into the future.  Seriously, the pace of my life has been such that securing even the slightest bit of time for anything other than sleeping, laundry, bill payments, and cleaning was damn near impossible.  It is funny how my sister, the new mom with an 18 month old, can summon help within moments of placing a phone call.  Meanwhile, spinster big sis, me, can receive no such help because I have no entered the noble business of providing my family babies.  Ok, I love my sister and that does sound terribly jealous.  It isn’t that I’m jealous.  I babysit all the time and realize how hard doing things that I do all the time are when you have a baby to watch after too.  I love babysitting because it reminds me of the simple freedoms I enjoy by not having any kids.  However, it is frustrating that so much of my family’s attention, time, money, and effort is so completely consumed in one place.  As I’ve been struggling and asking for help, I am not getting it.  That leaves me feeling terribly alone.

Since my last post, I’ve continued to hold my methotrexate injections.  One, I simply hate giving myself the shot; I get all creeped out that I’ve done it wrong and I’ll get some sort of crazy flesh-eating disease at the injection site.  Secondly, I was just so damn spent that I needed to get some sort of immune system back online to help me finally kick an 8 month long sinus infection and associated, disgusting, side-splitting cough.  I even ended up with pnuemonia.  I can’t remember if I wrote about that, I don’t think that I did.  I was coughing so badly that I couldn’t get any air in and I was freaking out.  It kept me awake at night, caused me to have to pull over while driving, and happened at the same time that the Swine Flu outbreak started.  So, with such a nasty cough and all over crappy appearance, everyone around me seemed to quaratine me away.  Finally, I made my way to the urgent care and was pronounced with walking pnuemonia.  This is the first week I’ve even started to get back to feeling good.  Thank God for summer sun, fresh air, and vacation!

All of my health struggles have really played havoc with my fitness plans.  That isn’t to say I’m defeated, as I know I am not.  I am merely just getting back to some strength.  Not having any sort of medically based treatment plan in place for the R.A. makes the pain a little tougher to bear, but I do.  I’ve even enjoyed going to the driving range to hit golf balls.  I had my clubs regripped with “an arthritic” grip.  I also bought a new bag that only weighs 3.5 pounds.  It makes it a lot easier to get in and out of the car.  I’ve noticed that my hands stiffen after golfing – just as they do with tennis – so I’ve found that if I just tuck them under my butt to keep them warm and compressed, that works.  I do this while sitting to watch TV.  I have to admit that asking the golf store guy about grips made me feel old.  They even recommended that I try the “transition” clubs for seniors.  Maybe I’ll do that eventually, but for now I still like swinging my heavy and powerful Big Berthas.

Golf aside, the tennis is fine.  I am continuing to run programs despite the effects of this slumping economy.  Sign-ups are down.  My costs are the same.  I will not make a profit this year.  I am okay with this since I prepared for it.  I’ve been really cutting out all kinds of frivolous spending.  Still, I will probably have to dive into some credit to get through the next nine weeks.  I’m still having to wrestle with my food issues.  Luckily, being on such a tight budget limits me from over indulging in much of anything.

I’ve been keeping up with my Go-Wear-Fit.  It is one of the coolest things I’ve ever purchased for fitness.  I had my bike tuned up and I’ve been riding.  This hurts me all over, but I don’t care since I can endure it.  I love feeling like I’m flying when I get up into a high gear on a flat stretch so that I’m barely pedalling and just screaming along!  It is great and my hopes are to get my mileage up.  I still need a day to recover after I’ve done a ride.  Whereas, that stiffness and soreness just pissed me off at first, I now embrace it as part of just knowing that I am doing it.  I don’t know many R.A. patients that can still do twenty-five miles.  Of course, I also don’t personally know many other R.A. patients, I just know that my mom hasn’t done anything like that since the early 80’s.

Speaking of R.A. mommy, she has been doing Pilates.  She spends beaucoup bucks to have private lessons on a reformer machine.  My mom claims to be having a whole heck of a lot of bad days.  She is really limping and says that it is painful in all of her lower body joints.  She has been changing her meds and adding in new stuff for the always new conditions that seem to errupt from complications of this and that.  She scolds me for not taking my shots.  She also buys these subscription only, hosptial based R.A. newsletters and magazines.  She gets two copies and always gives me stacks of this stuff to read.  She claims that I need to be well informed.  I agree that is probably true, but I’d rather my doctor is well informed for me.  I have enough to think about and keep track of.  I also don’t like to use my free time to read up on my friggin’ disease.  Yuck!  I don’t want to think more about it, I just want to tough it out.

Maybe this thick-headedness is not the best thing for my long-term joint health, but I don’t care right now.  I just need to do what I think is right for right now.  So, for now, I’ll continue to try and work out, eat healthy, sleep better and more, and enjoy some down time with my vacation.  More later as I’m sure I’ll have some more stories to share.

December 2017
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The Sacred Balance by David Suzuki