Posted in after the diagnosis, coping with chronic illness, coping with life threatening illness, living with chronic illness, Living with Illness

Stranger in a Strange Land

Ever watch those amazing folks that set up dominos and when they hit one it triggers this chain reaction that is amazing to watch?  I feel that way a lot of the time in my life.  I see something, read something, or experience something that triggers one thought after another…sometimes the ride is fun and sometimes it’s a bit bizarre.

I’m working in a different state from where I live and while I was driving, maybe because I felt a little lonely, I “really” noticed all the New York license plates on the cars (after all I am in New York).  Us out-of-state folks were truly not part of the mix.  That’s when the domino theory started and I felt even more like a stranger in a strange land.

I know this happens to many of you following your diagnosis of a chronic or other life-altering illness.  You feel like you get plopped into another universe where the rules are different, the language is different, and truly the culture is different.  This can trigger that experience of loneliness, and feeling alone and/or isolated is not conducive to creating a health and healing environment for your body, mind, and spirit.

I’m not suggesting that you invite your doctor over for your weekly poker game (odds are good she won’t come) but to find a community of peers who you have a bond with or are at least willing to pick up enough key phrases or ideas so you can talk (kind of like getting ready to go on a trip and learning enough of the language to be able to eat and go to the bathroom).

I’ve watched many people over the years hint at an illness when talking to someone hoping they ask the right question…”Are you sick? Do you have?” instead of you being the one who has to spill the beans.  I find this to be especially true for me when I go out and don’t order alcohol.  I haven’t had any alcohol since 1992 because of the negative effects of alcohol on my liver as a result of the medications I take.  The “no alcohol” triggers a set of questions for them and I have a choice, I can either tell them about my auto-immune disease or tell them I’m an alcoholic because that’s almost always what they’re thinking.

Organizations that serve individuals and families with a particular illness often have support groups.  A support group is a great place to find partners-in-crime who you can discuss your experience with and create social ties so you reduce or eliminate your feelings of being isolated.  In my case I’ve had my disease most of my life and I’m not looking for support in that fashion, but I do find it from national  organizations that write newsletters and have fund-raising events for research; there I find the comfort in knowing I’m not a stranger in a strange land.

It can be a difficult transition finding that new tribe or even believing you need a new tribe.  The fact is your life circumstances are very different from many you know and it’s not that they dont’ want to understand, it’s that it may take them a long time because they aren’t having a personal experience; their exposure to your health challenge is through your eyes giving them your perspective.

Support is important so seek out those who can support you so you feel a part of the local community in body, mind and spirit.

Posted in after the diagnosis, coping with chronic illness, coping with life threatening illness, living with chronic illness, Living with Illness

Do We Live and Die by the Number?

It’s amazing how we gauge our health by the numbers instead of how we feel.  In the show “RENT”, a young man in a support group whose numbers are poor is asked, “how do you feel?”  His response, “Best I’ve felt all year”.  We are so focused on the numbers that we often disregard the messages our body is sending us.  How can we learn to listen better?

Yesterday I went for lab work.  The side effect of the medication I take for my auto-immune disease is elevated cholesterol.  Left unchecked, the elevated cholesterol could wreak havoc on my body.  I just got the results back, lo and behold my cholesterol dropped by 40 points.  Needless to say I’m jubilant about the results.  The big question is do I feel any better?  Another question is now that my cholesterol has dropped drastically does it give me an excuse not to engage in other beneficial health activities?

It’s scary to think that a test tube of blood and a piece of paper can alter the course of our lives.  I wonder how much we fall prey to the placebo effect?  If I told you your numbers were better than they are would you feel better instantaneously?  Would the thought of greater health encourage you to continue health promoting behaviors?  I guess that depends on how much stock you put in the numbers. 

At this point in time my numbers are good, but I choose (notice the word “choose”) to move forward with my plans for health improving plans.  Tomorrow is the start of the walking season according to health experts so that would further my cause for keeping my numbers in the range I desire.  Maybe I will skip that ice cream since the fat isn’t good for my health.  I do realize that I’m a stress eater so keeping healthier food around is probably my best bet.

I think of the lab results like standardized tests; if your scores aren’t good does it mean your less smart?  In the medical world the numbers don’t always tell the whole story.  There are tests results that indicate the importance of looking deeper into the situation.  It doesn’t mean you’re sicker, but it could be a red flag for investigation.  It’s important to use multiple forms of information in making decisions about your health.  Have this discussion with your doctor and figure out how much you need to know, especially if you’re world view shifts with the numbers!

Posted in after the diagnosis, coping with chronic illness, coping with life threatening illness, living with chronic illness, Living with Illness

How Will You Spend Your Day?

Unlike yesterday, today is bright, sunny but still a bit cool.   No I’m not going to give you a daily weather report, but it is relevant to what I want to share with you today.  Aside from having an auto-immune disease for over thirty years, I developed asthma as an adult.  It’s one of those things I don’t think about until I begin wheezing and need to grab my inhaler to regain my breath.  I have what’s called “exercise induced asthma” which I find amusing since I don’t exercise.  The reality is that my breathing troubles are triggered when I begin some type of strenuous activity (yes I understand that strenuous is individually defined).

As I mentioned yesterday it was snowing here in Denver in the morning.  I was leaving the house and decided to give the driveway a quick shovel.  It only took about ten minutes, but as the time went on my chest got tighter.  By the time I finished I was short of breath and I went in the house to get my inhaler.  I sat at the top of the stairs, sat down and took a puff.  By the time I get my inhaler in these instances my anxiety level is pretty high.  I often believe that my anxiety about not breathing is worse than not breathing (I guess that’s up for debate).

Once I regained my composure I had to make a conscious decision about how I would spend my day.  I could hang on to the anxiety or I can let it go.  As with many who have a chronic illness, anxiety is huge.  The idea that in one moment you can be fine and like the weather in twenty minutes things can change keeps you on the edge of your psychic seat.  There is an anticipatory angst about how will the symptoms show up to day, if at all, and how will you respond?  It’s easy to sit in the anxiety and become paralyzed from participating in your own life.  So what’s the plan?

I’ll share with you my thoughts and then I hope you’ll share with me some of yours.  I’ve come to understand my body and its triggers.  I know the cycle of my anticipatory angst and can talk myself down from the ledge.  I obviously need constant reminders that my lungs don’t function like others and I probably need some more work accepting and taking precautions in this arena.  It is something I am committed to working on because the moments of gasping for air are far from fun and certainly don’t make for the start of a great day.  I have to surrender to the idea that I have certain limitations.  Yesterday it was about taking precautions before shoveling the driveway.  As I approach the warm weather I need to keep in mind that the same thing happens when I mow the lawn.  Being able to generalize my triggers is a big step.  I hope you’re looking at not only the specifics of your triggers, but how they generalize to other activities or situations.

This is the time when you have to begin a love affair with your physical body.  You have to court your body as if you’re beginning a dating ritual.  You need to inquire about likes and dislikes.  You may be saying, “Greg, I know my body and I know the triggers”.  I would beg to differ because if you did would you really intentionally provoke your body?  We do provoke our bodies and I know that to live a higher quality of life I need to befriend my body, not challenge it. 

How will you spend your day?  Will you stay stuck in the anxiety of the symptoms and limitations?  How can you transform the current episode into a fact finding mission so you can make better decisions next time around?  What would your day be like if you didn’t feel stuck or trapped?

Posted in after the diagnosis, coping with chronic illness, Living with Illness, Relationships

Is an Auto-Immune Disease a Civil War?

Last night I was catching up on Oprah’s “best life” episodes of the week (love watching it on the DVR, I can skip the commercials).  There was a big question about Oprah stating that her thyroid disease had been cured.  Fortunately, she had Dr. Oz ready and willing to discuss her thyroid issue and I believe it cleared the air for many.  He did make one comment that was an interesting analogy.  He said that “thyroid disease, an auto-immune disease is like a civil war”.

When he first made the comment I was surprised because I’d never heard it put in those terms before.  I guess it’s one thing to think about fighting the enemy and anothe when we’re fighting what we believe is part of us or who we identify with by race, nationality or religion.  So what is it about The Civil War that we have learned how to handle our own personal civil war.

The biggest sticking point in The Civil War was the issue of slavery.  Is there one sticking point in your auto-immune disease?  I’m not talking about a cure because if you had that you’d be disease free, the richest person on the planet and the winner of the Nobel Prize in Medicine.  I’m talking about one particular antagonist in your body or your lifestyle that can be changed.  Overwhelmingly doctors will point to stress as that one factor, but is it your?  If not can you take an inventory of the things that get under your skin, figuratively and literally and begin to flush out what provokes you physically, emotionally and spiritually?

We all have a limited number of resources.  It seems fruitless to take that energy and direct it to combating something internally when there are a host of threats on all levels to our health and safety out in the world.  I guess I’m saying this is a true to call to action.  If you’re facing an auto-immune disease how will you create reconciliation within your body?  What can you do to facilitate that reconciliation?  How will you invite the part of you that seceded back into the fold?  How will you discard the disappointment you feel toward that part that seceded?

I know there are a lot of questions but creating a personal, internal peace treaty is critical to your well-being.  How will you become the negotiator, facilitator and keeper of the peace…your peace?