The Real You

I have had a tertiary situation occur in the midst of trying to recovery from the most recent medical condition that greatly hampered any progress.  Okay, being real here. . . I quit.  I did.  I said, ‘forget it.  I can only handle so much physical pain at one time.  I have reached my limit.  Everyone should be happy, as others have said outright that I am not dealing with my diagnosis because I don’t “complain” enough.’  If they could hear me now, they would be very content to know that i have natural boundaries & limits of my pain like all people, and will, when pushed to my own personal limits, complain.  So, I am publicly stating that I am at the limit of what I can tolerate.

The conundrum is how to treat it.  Not as easy as it may seem, as the injuries incurred have a treatment that often conflict with appropriate treatment for my chronic condition.  I cannot remember the last time I drove a vehicle.  I take that back; I can.  The last day I went to work, I drove myself there and home.  I get lost in our moderate-sized community because I am not forced to think through how to get from Point A to Point B.  The first time I got lost while giving directions to a friend visiting, reality began to hit.

So you can perhaps sense the need, perhaps the desperation, to return to a more normal state physically.  Is it possible?  That depends on who you ask.  I am decades from giving up!  However, medication is currently impairing decision-making enough that I would not choose that route.

I have tried all other options in attempts to ease the pain.  Some have increased the pain, some have had a neutral effect, and a few have had minimal but slow improvement.  I am willing to be patient when I consider the options ahead if I accept this as the end.

Most of the medical professionals, as much as I appreciate & respect their views, would choose medication as the first option.  I am not saying it does not have a place in the course of treatment.  However, they are not in my home when it alters my thinking, my mood, my alertness – my role as mother and wife.  I don’t like having part of my personality disappear.  And I don’t seem to adjust to the medication over time. . . no matter how much time I am given. 

So they finally agreed it was time to return to some therapy, along with some additional treatments at therapy that had not been tried.  And?  This afternoon when the pain set in with its usual ‘I want to take a knife and stab myself so there will some physical proof of why I feel like this’ pain. . . I tried the at-home treatments rather than more pain medication.

I am determined to break the cycle.  The cycle of pain.  I am determined to life.  To live life fully, without impairment of medication when other options will work.  Everything in its proper place.  I am determined to be honest.  Someone asked me if I was surely feeling better because I ‘looked so good’.  I answered honestly.  No, but I am working on getting better.  I will be better.  Right now, I am not.

I am determined to be real.  The real me.  And I will be better physically, emotionally, and spiritually when I look back at this time. 

 

The Meaning of Life

I have been coming to terms with the fact that I am unlikely to be deemed employable either by my medical team OR my employer.  Perhaps some would find that to be great!  I do not.  I am thankful, however, that I am not prone to depression.  I do acknowledge that it is something I must guard against at all costs right now, as the opportunity for it is ripe.  In that vein, I have been questioning what my purpose is should it not include employable work.  (At this writing I am still homebound, so I am approaching the question from general terms.)

I began to look up different definitions for the meaning of life.  That is dependent, naturally, on where you are coming from with your center of core values.  One article tried to put the definition into an algorithm.  Hmmm. . . Not me, but perhaps you can agree with that.  Other suggestions included:

• God-Centered Views–one’s existence is more significant, the better one fulfills a purpose God has assigned. The familiar idea is that God has a plan for the universe and that one’s life is meaningful to the degree that one helps God realize this plan, perhaps in the particular way God wants one to do so.
• Supernaturalism–some kind of connection with God (understood to be a spiritual person who is all-knowing, all-good, and all-powerful and who is the ground of the physical universe) to constitute meaning in life, even if one lacks a soul (construed as an immortal, spiritual substance). The latter deem having a soul and putting it into a certain state to be what makes life meaningful, even if God does not exist. Of course, many supernaturalists believe that certain relationships with God and a soul are jointly necessary and sufficient for a significant existence.
• Self-actualization– Maslow’s term for maximally developing all our potentialities, and thus reaching the highest level of psychological health and awareness, is merely the implementation of fitness increase in the mental domain

Being one who has strong convictions of my own beliefs about this answer, and yet interested in others’ response to it, the search readily began to flesh out into divisions:  a reliance upon a higher source than oneself, as in the first example.  The other main category was to put the definition into a reliance upon oneself.  To approach life from the philosophical viewpoint.  Interestingly, the second example co-mingled the two ideas. 

I have held to the strong conviction that my purpose is in what God has planned for me from before I even existed.  I see so much order to this world, and justice brought out of chaos when I choose that relationship.  For me, it is what separates the first category from the others.  A humble acknowledgement that I don’t have all the answer. . . in fact I don’t have most of them.  The good news is that I don’t have to know all the answers, but can turn to the One who does.  Not my last resort in challenging times like now, but my first resort.

I am interested in how others find their strength.  It is not my purpose to judge, but to solicit an open conversation.  Thoughts?

 

Politics and Medicine

This has certainly been a colorful year for anyone who participates in the voting process, from those young enough to be observing & forming opinions to those who have been voting for decades.  Each candidate has made recommendations on how to improve the current healthcare system.  It is not my intent to use this forum to push one candidate over another, but to open discussion to the views of the three candidates running at the time of this writing.  Let’s start a sumary of plans from the Republican candidate, since that candidacy is finalized. . . Visit each candidate’s website (the hyperlink will send you directly to their page regarding their plan for any changes they would make as President regarding healthcare).  Offer your thoughts.  We vote on a candidate for many of their views generally.  What are your thoughts on each candidate’s plans specifically regarding healthcare? *** (See note at end of page)

Per John McCain’s website, he supports the following:

• Reform The Tax Code To Offer More Choices Beyond Employer-Based Health Insurance
• Make Insurance More Portable
• Encourage And Expand The Benefits Of Health Savings Accounts (HSAs) For Families

Plans to Ensure Care for Higher Risk Patients:

• John McCain’s Plan Cares For The Traditionally Uninsurable-You may visit the website for further details, but it offers sketchy details on how he wants to accomplish this.
• Work With States To Establish A Guaranteed Access Plan
• Work With States To Establish A Guaranteed Access Plan

Lowering Healthcare Costs

• CHEAPER DRUGS: Lowering Drug Prices
• CHRONIC DISEASE: Providing Quality, Cheaper Care For Chronic Disease
• COORDINATED CARE: Promoting Coordinated Care
• GREATER ACCESS AND CONVENIENCE: Expanding Access To Health Care
• There is far more. . . I encourage you to visit his website for the complete plan he has laid out and his views on how to reform healthcare

Barak Obama’s Plan for Healthcare:

• Plan to Cover Uninsured Americans
• National Health Insurance Exchange
• Reducing Costs of Catastrophic Illnesses for Employers and Their Employees
• Helping Patients
• Ensuring Providers Deliver Quality Care
• Lowering Costs Through Investment in Electronic Health Information Technology Systems
• Lowering Costs by Increasing Competition in the Insurance and Drug Markets
• Advance the Biomedical Research Field
• Fight AIDS Worldwide
• Support Americans with Disabilities
• Again, the website continues in far greater detail than space makes reasonable to put here.

Hillary Clinton’s Plan for Healthcare:

American Health Choices Plan (PDF)

Health Care Costs Agenda

Health Care Quality Agenda

Long-Term Care Agenda

Long-Term Care Insurance Market

Plan to Fight Cancer

Plan to Fight Autism

HIV/AIDS

Agenda for Reproductive Health Care

Standing for Seniors (PDF)

Hillary’s Plan to Find a Cure for Breast Cancer

 

 

 

 *** (Each candidate’s page was laid out differently.  My goal was to bring out their major points & give you the resources to review each candidate more thoroughly.  It would be a book, not a page, to mention each candidate’s complete views on this topic.  The layout is not in any way intended to endorse any of the candidates.)

Fly Like an Eagle

That is what I can do. . . in my mind.  Ergo, the problem.  I have one good day, and I just go for it.  I have no self-control.  None!  I have lived with this condition for years, yet never have I experienced such a setback as this.  I try to come to terms with the fact that this could be. . . dare I say it?  Permanent?!  I can’t.  It is unthinkable to me.  How does one reconcile themself to a life of where they were working one day, loved their job, enjoyed their coworkers, took trips to the store, driving, getting the mail ~ you name it ~ for granted.  Now, I find my days consist of time on a couch.  And I am content! 

Why would I be content with such a drastic change in my lifestyle?  There are so many reasons.  The most obvious reason is that when I sit with my legs reclined, and engage my mind in activities on the computer, I am  not in pain.  I find that my world centers around keeping myself out of pain. 

I take the necessary medication to maintain as normal a life as possible.  The medication alone renders me unable to have the necessary skills to drive safely.  If anyone had told me a year ago I would be in this position, I believe I would have been stocking up on activities to do.  However, many of my favorite activities involve enough mobility that there is the relapsing PAIN.  So, without realizing it, I find myself favoring activities that I still enjoy that do not make me miserable. . . and miserable to be around.

What an odd life.  I get dressed on the floor of my walk-in closet, and am content with the simplest clothes.  I used to be an utter clothes hound!  Now, it is about function first.  Don’t get me wrong.  I still won’t leave the house without my makeup on.  I may have lost a lot of function, but I’ve not lost my mind!

I can still enjoy doing some landscaping, it just takes creativity and determination.  Unfortunately, this is where I get myself into trouble.  Something is just beyond my reach.  I am certain I can stand long enough to make things right.  And I can.  But come talk to me later and ask me if I would still have made that choice.  So I learn. 

I learn patience.  Acceptance.  New things to learn.  New people to meet.  New ways to meet people.  New ideas to explore.  Taking up old loves that I somehow lost the time to do because I was always too busy.  Behind every burden there is a blessing waiting to burst forth.  It is my responsibility to go look for that blessing.

What does the future hold?  I have no idea.  Someone pointed to my wheelchair over the weekend, and meant it kindly when they said they hated it, hated seeing me in it, and they were praying against it.  God, show me more of Your strength in my weakness until it is all you and there is nothing left of me.  I used to be bothered by such comments.  Now I pray for the other person.  God is showing me immeasurable things:  about myself, about what really matters, about eternal things rather than focusing on the things that I think I have to have right now.

So in my mind, I soar like an eagle.  I may not on my legs or in my chair.  But He is taking me to higher places than I would ever go without these experiences.  I am soaring.  It is all a matter of your perspective of soaring.

Definition of a Chronic Condition

I got rather curious.  Who came up with that term, and what does it mean in general?  I know what ‘chronic condition’ means in my life, but what does the average reader think of when they see or hear this phrase.  I give credit to Wikipedia for the following information:

“The term Invisible Disabilities[1] refers to a person’s symptoms such as extreme fatigue, dizziness, pain, weakness, cognitive impairments, etc. that are sometimes or always debilitating. These symptoms can occur due to chronic illness, chronic pain, injury, birth disorders, etc. and are not always obvious to the onlooker. A person can have an invisible disability whether or not they have a ‘visible’ impairment or use an assistive device such as a wheelchair, walker or cane. For example, whether or not a person utilizes an assistive device, if they are restricted or limited by debilitating pain, fatigue, cognitive dysfunctions, dizziness, blurred vision, weakness, etc. these symptoms are their invisible disabilities.”[2] The Invisible Disabilities Advocate.

Some people with visual or auditory impairments who do not wear glasses or hearing aids may not be obviously impaired. (Some may wear contacts or have a cochlear implant instead.) A sitting disability is another category of invisible impairments. Sitting problems are usually caused by chronic back pain. Those with joint problems or chronic pain may not use mobility aids on good days, or at all. Other examples include Asperger syndrome, attention disorders (ADD/ADHD), brain injuries, chronic pain, chronic fatigue syndrome, chemical sensitivities, fibromyalgia, epilepsy, and repetitive stress injuries.

Invisible disabilities can also include chronic illnesses such as renal failure and diabetes if those diseases significantly impair normal activities of daily living.

The article continues on, listing types of disabilities:  autoimmune, chronic pain, dietary, neurological, psychiatric, and multiple chemical sensitivity.  That was pretty eye-opening to me, to read some of the conditions listed under these different disabilities.  Let me leave you with just a bit more of their statistics cited from this article. . .

About 10% of Americans have a condition which could be considered an invisible disability.

• Nearly one in two Americans (133 million) has a chronic condition of one kind or another.^[1] According to this report, the most common chronic conditions are high blood pressure, arthritis, respiratory diseases like emphysema, and high cholesterol.

• That number is projected to increase by more than one percent per year by 2030, resulting in an estimated chronically ill population of 171 million.^[2]

• 96% of them live with an illness that is invisible. These people do not use a cane or any assistive device and may look, act, and feel perfectly healthy.^[3]

• 25% of people in the U.S. with a chronic condition have some type of activity limitation; the remaining 75% are not disabled by their chronic conditions.[4]

• 60% are between the ages of 18 and 64.^[4]

• 90% of seniors have at least one chronic disease and 77% have two or more chronic diseases.^[5]

 

Clash of the Titans

The next few weeks will prove to be interesting, of that I am guaranteed.  I have been advised by someone well-versed in the subject of short-term and long-term disability matters how various scenarios play out.  The irony?  At a certain point, the patient begins to have little to do with the outcome.  As it stands, there are theoretically three parties; however, only two parties are currently playing.  It is rather like a game of hearts when your partner decides to ‘go it alone’.  You, the patient, sit at the table and wait until the cards have been played.

Party One:  The Employer  . . . Has been given information that states unequivocally that I should not be allowed to return to work at all.  Ever.  End of discussion.  The employer has motivation to see the employed (myself) return to work so that some reason can be given to dismiss me upon my return.  Yes, we all know there are federal guidelines in place to protect the employee from being dismissed for a medical condition.  Employers also have other means of displacing such employees.  Am I afraid?  Given the times I saw this played out before my very eyes, I certainly believe there is cause for great concern.  Nothing is gained, however, by predicting a negative future.  As stated previously, I am not a player in the game currently.  Certainly it is to the employer’s advantage financially to have me return to work, however.  This provides the opportunity for a dismissal of employment rather than a long-term disability payout.

How did I reach this point?  I really thought I was going to be gone for a few weeks. . .

Party Two:  The Medical Providers . . . Have built a case for why any further considerations regarding a return to work are out of the question.  It will not happen, I will never be a viable employee for them.  The unspoken words practically scream out, ‘please stop wasting my time and just accept that you have a LTD employee on your hands.’  That is certainly an understandable position as well.

So the cat and mouse game has begun.  We will see how long it goes on.  No one has very much time left on their hands.  And I am sitting there at the card table, just watching the game being played out before me, unable to affect its outcome in any direction at this point.

I never saw it coming.

HIPAA

Suffice it to say I have spent a fair amount of time having to know about HIPAA rules.  Furthermore, my employer puts a higher priority on it than most.  So I was assured throughout this process that all of my information was so confidential. . . ergo, the reason I have been so evasive during these posts.  Doesn’t make sense?  I didn’t believe them!

Whaddaya know?  I was right.  Information missing, vital information, and it is revealed to me by a slip of the tongue just exactly how it might have gotten lost.  Now, you either have all that information kept at your own desk for your eyes only ~ or you don’t.  Some questions are just black and white.

As my SO stated so eloquently last night upon this discovery, the parties involved probably wouldn’t realize that we would very likely know coworkers who could be walking around with all of my medical information.  We grew up in the backyard of my employer.

Now, this is not a violation of HIPAA.  Not whatsoever.  However, I have been told since the day I began working here how very protected my medical information is.  I work  there, and we are all human. Mistakes happen.  Papers get dropped when carried from office to office, etc.  But that is not what was told to me.  I asked point blank about the ‘rabbit trail’ of paperwork, and was told it went directly to the intended person.  No shortcuts.  It is my nature to begin questioning a lot of things when the little things start having holes in the story.  A dam doesn’t break overnight, but generally has pressure building over time.

Can I control this?  No.  Am I happy about it?  No.  Does it encourage open & forthcoming communication from me?  No.  By my very nature I cannot lie.  My face literally distorts when I even try to deceive someone.  I work very hard to find something positive to say when I am asked my opinion about something, and I have to come up with something that won’t utterly destroy a person who has just made a major decision.  Please don’t ask me! 

On the other hand, when I am the recipient of such situations I am going to put my guard up.  I will give others the benefit of the doubt all day until they give me reason to do otherwise.  Then I am likely to reveal as little about myself as I absolutely must.  For clarification of matters, this is hardly the first time this has occurred, but I did feel for a long time that I had some trust built up with one of the parties involved.  Others in the company definitely are not so compelled towards honesty. 

It is a character trait that I put at the top of my list when evaluating every person I come in contact with.  Is this a one-time situation because you are uncomfortable, or is this part of how you would be described?  There is a major difference between the two situations because to assign persistent lying as a character trait in someone who is in behaving in an unusual situational manner is a rush to judgment.  Soon you would find fault with everyone, and no one could measure up. 

We all have standards by which we judge people.  Hard for some people to admit, but it is true.  Sometimes it is by things that are beyond a person’s control, which is fairly defined as bigotry.  Sometimes it is based, as we are seeing, purely on a person’s political beliefs.  I am being honest ~ ha! ~ by saying this is probably the top critera factor by which I evaluate a person.  What is yours?

 

TENS Units

I am trying so hard to manage the level of pain I have.  I come up with a theory on what I am doing that causes the pain, when to try various things, and I think I just have my act soooooo together.  Oh to be so wise.

My physical therapist felt it was best to give things a rest for some time, which makes sense when looking at the big picture.  I took a break, and after about a week that seemed like the solution.  Soon I found the TENS unit was working wonders!  I even began using it proactively, thinking I could ward off the pain before it hit.  Take the pain medication, follow up immediately with the TENS unit, and it’s going to be a great day!

That worked great.  For several days.  Then, it didn’t.  In fact, it failed miserably.  A family member described it rather like a mild roller coaster with slow slopes up and down to express the improvement and setbacks.  A good visual example.  The big question is, am I getting better?

I reassessed things again.  The oddity that I am, I always loved exercise. In fact, anything physical.  So I went back to what was familiar.  Work the muscles one day, then give them a day of rest, then push them a little more the next day.  Good plan, works under normal conditions.  Well, the story every day is. . . I’m not normal!

I’m going to resting in peace.  I spent the morning moving my TENS unit around in conjunction with my pain medication.  I am having a lot of pain in my  neck, which i believe is because I don’t use my wheelchair to turn to people to speak to them.  I’m also not on the same level with them, height-wise.  I knew if I didn’t change my ways it would catch up with me. 

That is my own little secret that I am not sharing because I am really tired of therapy & all the medical stuff right now.  Okay, truthfully, I am at that point in the day when my medicine is making me really, really sick so what comes out right now may not represent where I am at attitude-wise for the rest of the day.  I just want to make some behavioral modifications, adjust what I can with regards to any DME equipment available to me, and move on. 

Quite honestly, I want a shower but my phone & emails have come at me with an onslaught all morning long. . . for 4 hours now and counting.  I generally can get myself ready in about 1.5 to 2 hrs.  When I have to do the full shower, etc. ~ everything ~ it is about 3 hrs. 

On a day like today, I don’t think anything could save me. I could not answer my phone or respond to emails, but then people rightfully ask how it is that I am at home recuperating and yet not available.  It’s a fair question.  If someone has a better solution than this, I would love to know what it is.  I am feeling flooded right now by attempts to manage the necessary affairs of my LOA, managing my pain, and wanting to be mentally sharp rather than be so constantly dulled by the medication.  I have been on it way too long for this to still be such a factor.  I think I’m a wuss!!

Is LOA designed to make you sicker or get well?

My whole experience with LOA has been one that I can honestly say I hope I never have to go through again.  As I have stated, I never imagined I would be gone such a long time.  I do know that I would never have made it without a family member to help me.

Everything has a purpose, but there really should be a better system.  Some of it is federal regulation, some is clearly company policy.  All of it is annoying to those who are sick and to the healthcare providers who do a lot of work & are not financially reimbursed for it.  You can say thank you, but some days it seems to go in one ear and out the other.

Mountains of paperwork, a specific number of days to fill it all out, employees who ‘don’t think it’s their job’ and could care less if I lose my job if they don’t fill it out on time.  Stress?  Stress is knowing that if it isn’t completed & returned on time, you just lost all those benefits.  I wonder if the parties involved would like to pay my hospital bills or provide a paycheck.  Through begging, pleading, and literally sitting outside in the lobby (not me), the paperwork was rushed to arrive at the final hour.  I am thinking that did not help with my initial physical healing, but we aren’t supposed to hold on to those things.  I think I am a little frustrated over that because of an appointment yesterday with a physician scratching their head, asking why this has been such a severe attack.  And he doesn’t know about the things going on internally.

I then wait to see if it has been approved.  They have an allotted number of days, and you are to be notified in a specific manner.  In fact, in two very specific manners.  One is through your local office.  They ‘forgot’.  Yes, that is the word that was used.  Forgot.  Then I would learn that everything I had signed up for the previous year as options to come out of my paycheck keep coming out.  Everything.  Because we had so much mandatory overtime & I had a ton of deductions, my paycheck was now 1/3 of what it was before. 

Until my STD was approved, I had to call in sick every day.  If I missed one day, it was over.  No job.  So every day that the medical office delayed turning in my paperwork, I had to get up at a very early hour to notify them of what they already knew ~ I wouldn’t be there that day.  My SO (to remain anonymous) was out of town or trying to keep the kitchen stocked with food that I could prepare myself during the day.  Pay bills, maintain all household responsibilities, take me anywhere I needed to go (I still haven’t driven anywhere yet).  It was suggested that he make the calls.  Yes, he needed one more thing to do.  Wait, no he didn’t.

I think I started resting about the 4th week.  Just in time for my first followup appointment.

More reasons not to be . . . wasting away in Margaritaville

And how could I forget?  We have had flowering trees blooming everywhere for weeks on end.  It is like a rainbow of color absolutely exploding.  Then all the birdhouses & feeders.  We purposely set out a bluebird house that we could watch from our bathroom window, years ago.  I have watched the entire mating season.  It has been incredible.  Cardinals, bluejays, martins, way too many to mention.

Did I mention how much I love nature?  Nature and landscaping.  Years ago we had begun a formal design outside the back views of the house, and it is just an incredible sight.  I have missed so much of it because I was working.  This time has truly been a priviledge to have at home.

Last week at church I was so impressed to have God show me if I was wasting my time.  In fact, more than that.  Was I using it in the manner He would have me to use it?  If we lived in some kind of perfect world, we would examine our lives daily to see if we were living it to our fullest potential and greatest fulfillment.  As that is not reality, it is still a goal that I think is good to examine periodically for oneself.  No one can answer that question for you.  And it takes brutal honesty sometimes.

We met a wonderful family man once on a family vacation who openly revealed how much he despised his job.  I couldn’t believe it!  I barely knew him, but I asked him why he chose to spend 1/3 of his life doing something he so intensely disliked.  He then reviewed the amount of time he spent traveling, and it was significantly more time than that.  I didn’t know what I had stirred in him.  We met at the same location, same week in July, the following year.  He looked like a totally different man.  He had chosen to pursue his dream ~ and his entire family came running up to thank me.  Well, he was the brave one.  I just started yapping before I thought about it! : )

I am thankful for the experiences I have had, some that others think I should despise.  They have made me stronger, more determined to focus on what is truly important.  I know some people will never buy into that.  I feel sorry for them.  I see the struggle inside them, but I can’t fix it for them.  Some will listen when they ask how you handle the situation, and appreciate it.  Others are dismissive, and that is okay.  God gives us baby steps to learn His path is the easy way.  We can choose to follow it, or not.  Then, He may throw in a few more challenges, but He will keep trying.  It’s His nature.  And it’s our choice.  And no, that doesn’t mean that every challenge you face in life is discipline from God.  That’s another topic. . .