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.

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.

 

The last post in here was forever ago!  My life has been chaotic to say the least.  I had my surgery (after a last minute approval which I’ll detail later) on July 29th.  I was out of the hospital on Aug 2nd and apparently doing fine.  As part of my at home recovery I had to give myself shots of Lovenox, a blood thinner.  A few days later I was back in the hospital with a major GI bleed.  My blood count dropped to a 6.  I had transfusions and many IVs to clear the blood thinner out of my system.  I had to wear a heart monitor since my heart had gone into tachycardia while I was so anemic.  It was pretty frightening.  Again, I’ll go into that later. 

I returned home from the hospital on Aug 10th.  That was an expensive stretch.  Then on Aug 22nd I was back in the ER with extreme digestive problems and pain.  It turns out I picked up a bug from the blood issue hospitalization.  I had allowed myself to get extremely dehydrated too.  All of that combined into a nasty spell of a few days being hooked up to IVs and having various tests run again.  I missed the first two weeks of school because of it.  I had to resign from my fall coaching position and my surgeon was there to witness the waterfall of tears.  When I returned to school I was a mess.  I still had a hard time eating.  I was still dehydrated.  I was trying to make up for my absence with getting to know the kids and getting all of my grading done.  It was beyond stressful.

I worked and worked these past three months.  Now, finally, Thanksgiving is just a couple of days away and I have time to type.  I’m down about 80 pounds from my heaviest last January when I went in for the consultation with the surgeon.  That should be great news, right?  Ha!  Being so damaged from constant negative fat comments, I still think I look huge.  I am still always on the verge of falling into the hopeless and negative thoughts that are so intertwined between food and mood.  These two things have been my life since I can remember – even as a child.

The R.A. is what this is really about.  There is research and I’ll post a link if I find one that suggests if an R.A. patient undergoes the RNY gastric bypass that the digestive re-routing has a positive effect on joint pain.  In other words, that the effects of changing up the digestive tract counteracts the R.A.  Whatever the real research is there, I can say that my feet have not hurt in all of October and November.  That searing hot, stabbing pain that was a dreaded part of my every morning as my feet swang from my bed to the floor is gone.  What a relief!  I also notice that my fingers aren’t as stiff.  I wonder if it is the cutting back of sugar from my diet?

The post-op RNY diet is extreme and that accounts for the weight loss and lifestyle change.  I was eating absolute trash all along before this.  I was even binge eating at times, usually times that correlated with depression, anxiety, loneliness, and stress (which is pretty much 90% of my world).  Post-op, if I even eat one bite too much of something I end up praying to the porcelain gooddess…so to say.  It isn’t pretty.  I’m learning through just such negative reinforcement to portion control and be wiser in my food choices.  If what I eat isn’t guaranteed to make it through me, than I better pack what I do eat with nutrients.  Thus, the 80 pound difference.

Would I suggest RNY to morbidly obese friends and family members?  Absolutely! 

While there is nothing easy or quick fix about medically altering your physiology, there is hope in it where diets and will power have failed.  Even the positive effects of gastric bypass may be negated, the pouch can stretch from overeating, food choices may revert back to old habits, high caloric foods and drinks may still lead to weight gain – etc.  I know those risks exist and threaten my success each day.  I know my mind is still the same mind that allowed myself to turn to food for self-medication.  I’m still me no matter what the scale and closet say.  This is where I need to get real serious.

There is a lot of work to be done introspectively.  I need to meet my mental demons head on.  I need to grieve and process anger.  I need to recognize the hard struggles I’ve endured and make ammends with my regrets.  There is a long road of psychological atonement that I must walk, and just like the weight loss it must be slow and steady to be effective.

As far as the insurance company goes, they paid for everything.  I’ve had to cover some co-payments here and there, but otherwise it is all good!  Thank the good Lord!  There is no way that I could have handled the estimated expenses I was looking at as all of the bills poured in.  Three separate hospitalizations was REALLY, REALLY, REALLY expensive!  I’m grateful to be feeling better, doing better and walking, biking, and even jogging, for the first time in a long time.  I’m glad that I did this bariatric procedure!

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.

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.

This will (unfortunately) continue to explore this idea of anger.  Let me please preface this by saying I am completely torn at the moment since I’m trying hard to resolve my current anger with deep breathing, mindfulness, and empathy.  Despite my best efforts, I’m still very angry.  Here is the situation.  I was enjoying a nice ride on a summer afternoon, simply commuting, but really taking notice of the sunshine and the lack of heavy traffic and the way the grass was so so so green along this stretch of rather unremarkable road.  I was lost in thoughts about colors and sunlight when my sister, the middle one, called and told me that mom was looking for me because her knee went out….again.  I was maybe 20 minutes away so I just drove over.

It feels like a broken record just skipping over and over again.  Mom goes from managing to complete break down.  Everything in everyone’s world must accommodate this.  It is 11 p.m. and I’m just wrapping up a day’s worth of unplanned-for care-taking.  Forget that I was invited to a gathering of friends I had not seen in a couple of years…I had to go get groceries that we had no room for in the already over-stuffed fridge.  I had to water the unplanted plants that I begged my mom not to purchase knowing that nearly two months after the green spree they would still be sitting in their little containers on the the patio…in fact over-running the patio so that no one can even sit in a chair out there.  I had to do the ridiculous pet-feeding.  Can someone verify that this is indeed a vet’s inside joke?  Okay, the dog gets a little dry kibble, a mix in of organic meat and veggie thing, and a scooping of canned green beans (it is a scoop of pumpkin pie mix if it is in the am) – then that gets microwaved for 9 secs and 70% power.  The cat has a similar deal, minus the pumpkin/green bean thing – but, yes, still microwaved.  Then I went grocery shopping.  Then I started dinner.  This is where the evening began to go downhill.  It began when the dog was pawing at something underneath my mom’s recliner.  I flipped the chair back expecting to find a dog toy, rather I found a Vicodin.  Okay…stray nacortics….great.  My mom has been hitting up the Vicodin, no shock.  I got a prescription of Vicodin for RA pain too.  I also got it post Gallbladder surgery and other procedures.  I still have it all in the old prescription bottles.  I barely use it, if at all, since I have felt so friggin’ high on it and because it kills my already messed up stomach.  So, there is that.  Next, my mom, who claims to be on Weight Watchers, wants a wilted lettuce salad.  Well, here comes bacon.  Someone please tell me if I’m wrong, but having to combat RA is bad just on its own; throw in obesity and (as I know) that can only make things worse.  The joints of a healthy, but obese person, are already under stress just from weight alone, right?  And, here, today, this knee joint is acting up…so, it would then make sense to fry up bacon, use the remaining BACON GREASE, add SUGAR, SALT (yeah, there is something else an obese person needs), and other stuff to create a “dressing” that then is dumped all over the lettuce so that it wilts into a greasy, sugary, salty, plus crumbled bacon, SALAD?  I don’t get that.  I asked my mom if we really needed to do this “salad.”  She asked why I was asking, to which I replied, “because I don’t want to have to clean up the frying pan.”  This was a truth.  She told me that, at most, she only has bacon maybe once a week.  This has to be impossible.  There was one week where the frying pan had to be cleaned following bacon at breakfast, then I had to clean it again following a BLT for a late lunch, and then the next day it was a fried ham steak – just fancier and thicker bacon.  So this conflict over the “salad” escalated and turned into the typical, I’m mean and my mom suffers more than is humanly possible to understand or empathize with.  My dad showed up and things just kind of got worse.

This down-turned economy has hit him hard.  He is extremely worried about how to make ends meet.  As part of my mom’s many issues, she now has had an audiologist offer to design a hearing aid so that she can hear p, t, th, and some other vowels more clearly.  My dad freaked a little a the cost of this designer hearing aid and asked my mom if he could get the specs for the device and then shop the hearing aid around.  This is what my dad does.  I think that the Jeep dealer maybe made $100 comission by the time my dad ran deal after rebate after promotion over him.  My mom was not going to have any part of that.  She blew up, starting bawling about how she is “a cripple” and how my dad could just take it go to all the stores he wants….and so on and so forth.  Two seconds later I was asked to go fetch her sleeping pills so that she could retire to her recliner.  I brought down a pill and then was scolded for not bringing the whole bottle.  Then I supervised the dog’s peeing, fetched a pillow, and somewhere got the dishes from dinner done, noticing how the green beans that I had to cut and trim the bad parts off of, all got thrown away…so that was a great investment of my time there.  I was getting madder by the minute.  My mom had my dad dig out crutches, which then she snapped about how they were not sized right and who messed with them…and my dad tried to fix them only to be told it still wasn’t right.  Then my mom had to go to the bathroom.

Flashback to Christmas of 2008.  Same thing, or something like it.  We are all gathered at my middle sis’s house.  My mom and dad are really, really late.  My mom has something give and the whole holiday, I kid you not, the whole holiday is completely efffffed up…not because something medical requires attention, but it is HOW she whips the whole matter of fact medical thing into a life or death, she should just be dead and out of our hair, and why, why, why, why me thing.  At that point, my maternal grandmother had been deceased a little while and we had all of her nursing home things in the basement – along with wall to wall and floor to ceiling other relics (a la hoarding issues). So my dad put my mom in her mom’s former wheelchair.  Then we had to put this high-chair toilet thing in our 1st floor tiny bathroom.  Well, that toilet thing made a reappearance tonight and it just reminded me off all that wonderful holiday drama.  Our family is supposed to meet for father’s day on Sunday at this lovely park.  I doubt that we can do that now.  It is frustration all over again.

What is more frustrating is that I’m now considering if I’ll actually be able to do this ELECTIVE surgery that I’ve been working up to.  I’ve saved up some money to cover what the insurance can’t, yet, I’m worried about the burden I’ll be on my family as I try to bounce back from it.  Will it be just one more thing to stress my dad?  My youngest sis is scheduled for a lumber fusion at the end of July.  I’m scheduled for mid July.  Then, who knows what my mom will ask of this ortho-god-doc who she wants to have do a knee replacement operation on her STAT.  How is that fair to my dad?  My youngest sis absolutely needs the fusion.  My mom will probably also absolutely need the replacement.  Where does that leave me?  I believed that I need this help too – mostly so that I don’t slide down the slippery slope of despair into my mom’s poor quality of life.  I asked her tonight if losing some significant weight would help this whole knee thing…I asked while I was obliging her mood by frying up the damn bacon.  She said no.  She assures me that really overweight people get knee replacements as much as normal sized people.  But again, if losing weight, even just by making a smart choice in the realm of what is a healthy salad and what is an excuse to eat bacon, could help the situation, then wouldn’t that be something to attempt with a real attempt at attempting?

I’m so frustrated.  I helped.  I did everything that was asked of me.  I had to go against my better judgment.  I had to listen to the moaning, gasping, and sighing that went on and on (like it does even on “good” days).  I had to hear my parents fight.  I saw how tired and old and beaten down my dad looked when I glanced at him working on an order, punching the keys of his laptop out of frustration and regret.  Sometimes people ask me, “if you could go back to some point of your life, knowing what you know now, would you do something differently?”  I think I know where I would go and what I would do, but I wonder about my dad….would he think to have never married my mom?  I know he will be loyal and dedicated until his dying breath…but is her spiraling into these snaps and breaks on an ever-more frequent basis draining the life out of him….her sole provider?  It is all so irrational and messy and dark.

This is that anger.  I take and deep breath and I try to imagine myself in her shoes.  I can and I can’t.  I have pain – all the time, sure, I’m not taking medication.  I’m twenty-six years younger.  I have crunching noises that I started to hear in my knees last December…they hurt and I often marvel at the capacity of our skeletal system to endure the things humans slam it with.  I can’t empathize with my mom’s situation.  I drove by a road-kill fox on my way to work today and I empathized more with it.  This makes me feel like a mega-brat.  How can I care more about a fox I never met than the now complete invalid of my mom?  What is wrong with me?  I pray to God that I will not go to my grave without having ever achieved some sort of forgiveness/reconciliation/atonement with my mom.  She has buried her sister, mother, and father and never really achieved healthy relationships with them during their lives.  My mom was always, and continues to be, a very angry human.

As much as I don’t want to be her, I get consumed by my anger in moments like this.  I can be so peaceful, so positive, so intellectual, so proactive…and then I’m thrown from my tracks with my mom having one her crisis situations.  I’ve tried so hard to be this somebody, anybody else, that the anger of having to try for that fuels the fire more.  Simply put, I have mom issues.  It breaks my heart to see this suffering that I perceive in my dad, the ultimate caretaker.  I can sympathize forever on that, but I can’t with my mom.  Going back to being little kids, my middle sis can’t understand why I just can’t be nicer.  “I did what see asked me to do for her,” I counter.  “But you weren’t caring or warm about it.  You did it like it was a job,” she would say…..and, that is the truth.

The term “Caregiver” implies “care.”  I’m not that person.  I don’t do this routine over and over again because I care.  I do it out of birth order duty and proximity.  My youngest sis is too far, the middle sis is too busy being a mom.  The pure fact of my singleton status, leaves me.  I’ve seen the news magazine stories where the one family member is plagued by some life-changing thing: brain damage, ALS, cervical trauma, and the family members rally around this one individual showering him/her with love, attention, devotion, positivity….they care.  I wonder if my mom believes that she should have that too.  We do what we have to and that is about it.  So sad.  So so so sad.

I’ve said that I don’t suffer from RA. I do, however, contend that I suffer because of RA.  Tonight is the perfect example of how this shadow of RA (mom’s RA) continues to impact my family.

I promise to get back to something more positive as there are other things to discuss in the larger scheme of things.  I’m just fired up on this right now, so – as I thought it would – my writing has been cathartic…phew!

“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!

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!

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The Sacred Balance by David Suzuki
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