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

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

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

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

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

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

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

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

There is more….

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

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

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

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

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

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

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

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

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

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

 

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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.

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!

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The Sacred Balance by David Suzuki