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. 

 

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.)

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]

 

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!!

My Last Day at Work

I am writing this after a considerable amount of time off.  I recall commenting to a coworker the day prior about some weekend plans, which is very rare for me.  I have some hints of my personal life that indicate my life is uber-swell.  It is.  Painfully too swell for some around me, and to discuss how well life goes for me sometimes would be a tad annoying for those who had to endure listening to it. . . as long as that was the only side they ever heard.  That particular weekend we had some big plans, and the coworker & I had engaged in a conversation that revealed part of my personality and general financial condition that I generally choose not to let others see.  Lift others up, don’t make them feel defeated. 

I was surrounded by people who had either made poor choices in life or felt they had been dealt a raw deal in life.  I believe that life is what you make of it.  I’ve watched family members squander away money that others could only dream of having one day, and I’ve seen other family members rejoice that someone came to visit them.  I call it an Attitude of Gratitude.

Needless to say, no one at my office had a hint that I had a chronic illness except for a few individuals that it was necessary to inform.  I was doing well physically, thankful for a job that I truly loved, and expected to retire there.  I was looking forward to the weekend, as the months upon months of overtime were wearing me out.  Many people had had all kinds of illnesses, as one would expect.  I found symptoms building slowing over time, felt I was managing them within the confines necessary to maintain my employment, but the demands kept building each month.

Nevertheless, I left on a Friday with who knows what at my desk.  We aren’t a company that gets worked up over personal security, although there is a place to lock items up.  I would do that if I knew I weren’t returning for many months.  As it was, I don’t remember anything about the last time I left work.