Patients like us, [Baby] we were Born to Run…to the Bathroom!

@TravisSMcClainCrohn’s Disease patient & Twitter Pal 

Saying living with a chronic illness like Crohn’s Disease can be difficult is as mendacious as many of the 2012 Presidential political claims.  In that regard, I woke up this morning with intermittent excruciating joint pains which alternated from my wrist to finger to shoulder, finally settling, in of all places, my left heel.  I felt like a Senator John Edwards Voodoo Doll being pricked by former Vice President Dick Cheney.  I was also battling extreme shortness of breath due to some “inflammatory” lung condition which has hospitalized me many times and even forced doctors to once put me on Chemotherapy for a few months.  That sounds rather intense but Crohn’s and chronic illness have caused many strange and serious medical conditions for me over the past 30 years.  But today I was supposed to hear back from a Durable Medical Equipment (“DME”) company about purchasing a Nebulizer so that I could have “breathing treatments” at home as per my compassionate Pulmonologist and thus could stay as far away from hospitals as possible.  Call me crazy but expecting that Nebulizer created an almost Christmas-like atmosphere in this Jewish “Household.”

The Nebulizer

The outstanding issue and reason for the DME callback was the amount of reimbursement from my health insurer because I’m broke and I knew I’d already hit my 2012 out-of-network benefits deductible of $7,500.00 so it should have cost me very little out-of-pocket.  Naturally, a polite woman from said DME company called me just as I had comfortably arranged my painful  body parts on my couch, to tell me, my insurance company told her, I had not reached my 2012 out-of-network benefits deductible, so the DME folks required a credit card.  Before capitulating to her, the kind DME woman gave me the very useful health insurer “reference number” so I could follow up with the brain surgeons who handle customer service at my health insurer whose name rhymes with “Moo Boss.”

I was exasperated at the level of incompetence of the 1st-level customer service people at my health insurer, and I was desperate, so I borrowed a credit card from my Mom, who isn’t exactly on “Easy Street” at 77 years of age having to use most of her bare bones “golden years” “nest egg” to care for her 49 year-old disabled son.  Because of Crohn’s Disease, that disabled son is me and I’ve been denied Social Security Disability twice and now have an attorney who is handling the Appeal but he has told me I must wait another 12-14 months for a Court Date for said Appeal.  Money is not flowing in this “Household,” so the Christmas-like atmosphere faded fast, once credit card reality set in.

Dealing with Health Insurer Moo Boss

As soon as I finished giving the DME woman my billing and mailing information, I called my health insurer and quizzed the Moo Boss customer service person about my 2012 out-of-network benefits deducible and even gave her the aforementioned DME reference number.  This Moo Boss customer service person was so confused by the meticulous details that she got nervous and tossed me up to her supervisor.  Moo Boss supervisor person confirmed my belief about having already met said deductible and promised to call back the DME company so that my Mom’s credit card would not be charged.  I waiting 10 minutes and called myself, just to make sure.  Glad I did because the DME company was getting ready to charge my Mom’s credit card as Mr. Moo Boss evidently has poor communication skills.  More specifically, there was a “failure to communicate” and some inertia was required to reverse the status-quo, as it always is.  I was thankfully able to do that and the Nebulizer is on its way and I will be balanced-billed for what Moo Boss doesn’t pay.  Granted, my blood pressure probably rose with each phone call but in a strange way that seemed to power me through the pain of having to move off the couch to get a pen and paper to jot everything down to “protect myself” from further Moo Boss failures in communicating.

Social Security & Public Assistance

Before I could even think about enjoying my breakfast bowl of Fruit Loops and soy milk, my Social Security Disability attorney then called me to answer an SOS email I had sent him when I got frustrated the other day trying to apply online for “Public Assistance” as I have no means of paying for ANYTHING as I wait the 12-14 months until I hopefully get declared “Disabled” and start receiving Social Security Disability benefits (along with a separate check dating back to when I first became disabled.)  You see, being trained as an attorney and being detail-oriented, I couldn’t complete the online Public Assistance application because it was asking for the financial income and assets of my “Household.” If the “Household” definition included my Mom, I would be denied ALL Public Assistance benefits because even her meager monthly Social Security benefits would catapult us out of Mr. Mitt Romney’s47% of Americans” who are apparently mooching off the government when they should be “movin’ on up, to the east side, to that deluxe apartment, in the sky….

My lovely Mom

Seriously, I thought it was unfair to be required to include my widowed Mom’s monthly income in assessing MY need for Public Assistance because we are separate adults and it is MY Crohn’s Disease which is disabling ME.  In any event, because she is my Mom and a compassionate and generous person, her monthly Social Security checks are already being eaten up when she pays for my monthly prescription drugs, frequent hospitalizations and unpredictable doctor visits.  She is doing all she can but that helps me merely SURVIVE and her much appreciated sacrifice comes at the harsh cost of compromising her own quality of life.

It makes me sad to think of our situation because in addition to being my Mom’s adult dependent due to my medical disability, the overall result is that we are also BOTH completely financially handicapped.  Therefore, I think it is unjust to include her financials in assessing my need for assistance (and thus counted toward the determination of my “Household”) when she has no legal obligation to support me but can’t imagine me living in a cardboard box with no private bathroom!  In summary, I don’t want to misrepresent our situation or run afoul of any laws pertaining to how these Public Assistance eligibility tests are determined.  Accordingly, I was hoping my attorney could clarify things so that I could quickly apply for even Food Stamps given that I have absolutely no income and only exorbitant medical bills.

My Smart Attorney

My attorney is a smart, experienced and compassionate man but he told me that as long as my Mom helped me with “extravagant” things such as food, shelter and the Sunday night opportunity to entertain myself watching “The Good Wife” on her television, she was part of my “Household” and I thus would not qualify for ANY Public Assistance.  I countered with the logic that this government policy made no sense because, as a result, my disability would be affecting, and possibly ruining, two lives, instead of one.  He told me I was crazy to think that logic would be persuasive with bureaucrats. 🙂

I asked him what to do for sustenance and minimum amounts of money to pay for my prescription drugs and he told me I’d have to wait 12-14 months for any government assistance.  We bantered back and forth for a few minutes sounding like an old “Abbot and Costello” routine, with me making clear my frustration was with the “system” and not with him.  He wished me good health and good luck until the next time we spoke.  When I hung up the phone, it hit me that he could not help me with my immediate need to qualify for some type of Public Assistance.  I realized that I’d have to use my legal talents, when I am healthy enough to do so, to find some case law or unique interpretation regarding the definition of a “Household” within the context of applying for Public Assistance in my state. I will do that, but with impending Cataract Surgery next Thursday and me doing everything I can to stay out of the hospital for my breathing difficulties and severe joint pain, I don’t know when that will be.  Said Christmas atmosphere was now, all but gone.

The Boss wakes me up

Before I tried to organize my painful body parts to move off the couch, as one, toward the kitchen to my waiting “Breakfast of Champions,” I actually felt the weight of the frustration and disappointment I had experienced, all, by 10:00 AM.  At least I had the Marines beat by experiencing more disappointment before breakfast than most people go through in a week!   I wanted to cry but that train left the station years ago when liquid tears actually came out of my eyes when I got so sad.  I’ve just become too good at dealing with adversity and tears don’t come easy.  So with nothing else to do but head toward the kitchen and possibly more disappointment if my Mom had purchased the “store brand” of Fruit Loops, I turned on the television.  For some reason, getting immersed in someone else’s fictitious life helps me escape mine and I imagine that’s why I turned on the television at that precise moment. Evidently the channels had been surfed furiously before my Mom shut the television last night (i.e., she fell asleep on the remote control and caused many buttons to be depressed simultaneously) and when the TV turned on,  the “Palladia” Music Channel was playing.  I was about to channel surf myself until I saw, what I thought I had heard, namely, Bruce Springsteen and The E Street Band playing Live before a crowd in New York City.  It was the 30th Anniversary of “Born to Run” and if my memory was accurate, I remembered I had attended that show with my best friend.

Mighty Max Weinberg keeps me up!

The song “Land of Hope and Dreams” was playing and my Mom was simultaneously calling me into the kitchen to eat breakfast but watching Bruce Springsteen was mesmerizing and trying to keep pace with the Mighty Max Weinberg on drums proved impossible.  Yet, the task had “my body smiling” and I was quickly forgetting about Moo Boss and the Public Assistance definition of a “Household” as I tried to anticipate the next song.  It was “American Skin” [41 Shots] and I love that song so I just stayed on the couch and let the music soothe my soul.  It sounds like a cliche but that’s exactly what The E Street Band did to me this morning.  I would have never thought that watching a cool and beautifully sounding concert at 10:00 AM would suffocate a BAD Crohn’s day but that’s what music can do.  The great Brian Wilson of Beach Boy fame has been right all along, “Add Some Music to Your Day.”  Then I heard the beginnings of “Backstreets” and the joint pain seemed to go away as I tried to again keep pace with Max.  Then “Darkness on the Edge of Town” affirmed what I was doing, exactly how I was doing it.   It was like the Band was talking to me and making me feel like “everything’s gonna be all right” just “have a little faith.”  My mind was controlling my body and I started to feel so much better that I even enjoyed “Lost in the Flood.”

Unraveling the effects of years of Chronic Illness through Music

I recorded the rest of the concert so that I could eat my breakfast while I watched.  I was generally familiar with the Set List so I fast forwarded to “Jungleland” and I was so intensely thinking about the lyrics that I had created a pleasant diversion and was so far away from customer service incompetency.  “Light of Day” was next and after “jammin’ with the Band” to finish the song, I literally felt as if I had enjoyed myself too much so I stopped the recording and turned off the television and tried to go back to the couch to eagerly await my Nebulizer and upcoming Cataract surgery.  It’s amazing how years of battling chronic illness can condition the mind to apportion and enjoy only a certain amount of joy and happiness because it almost trains the patient to expect bad news or painful feelings just around the corner.  But this morning I let music overtake me and I just went with the flow and tried to carry my new sense of calm with me as I took on the rest of the day.

Let’s just go “Racin’ in the Streets

Unfortunately, my enlightenment was interrupted by confirmation calls from the eye surgeon and then by dunning calls from medical creditors but I would not lose sight of the fact that I had learned something significant today.  Music, just like narcotic painkillers, can soothe pain and really take you away from your problems; albeit temporarily. But Music is a much healthier “medical treatment,” it’s always available, it comes in so many different forms and it’s not addictive.  After a few more mundane frustrations of the day, I took my own advice and made it down to my computer and listened to my favorite song by Bruce Springsteen and The E Street Band, Racin’ in the Streets.” The Live Extended Version is a beautiful juxtaposition of Professor Roy Bittan’s magical fingers on the piano and Mighty Max Weinberg’s “feel” for pulsating and intensifying the mood, when need be, but always in synch with the rest of the Band, and especially with the maestro piano player, Roy Bittan.

Thank you – Bruce Springsteen and The E Street Band

I’ll never forget today’s “musical medical illumination” because the way I feel when I listen to or watch members of The E Street Band use their respective individual musical talents to create this sound is simply Good Medicine.