Symptom Management & Muddy Water

Having a chronic diagnosis throws a wrench in my sense of “wellness balance”.  Some people have a flare then  no more problems; others have persistent, relentless disease and are debilitated.  Being in the middle of the continuum is very muddy and grey.

Over the last ten years I’ve spent about two years of it feeling really well.  The well times are scattered around–a week here, a month there.  For me, the name of the game has been “SHREWD SYMPTOM MANAGEMENT”.  It frustrates me, my friends/family and even my doctors.  The symptom list is long.  Some of them come and go; others linger like a cloud.  It has also colored my perception of others (as I’m sure it has colored their picture of me!).

I hear patients complain about being nauseated or having diarrhea (WARNING:LEAVE NOW IF YOU’RE DELICATE OR DON’T WANT TO KNOW TMI!) and feeling achy & flu-like.  I’m tempted to reply “I ran to the bathroom 11 times & puked twice before I came to work. My whole body feels like a toothache. Suck it up.”  However, I refrain & hold my tongue, reminding myself that everyone’s “normal” is different.  If the patient had managed those symptoms for years, he/she would have a different perception & a fist-full of coping strategies as well.

My symptoms began when I was 17 years old & the string of doctors and tests began.  After several visits & processes I was diagnosed with “anxiety, nervous stomach & irritable bowel”. I finally gave up on doctors, lost my insurance and got busy raising kids and working.  Yet I was always sick.  Fevers, rashes, sores in my nose and mouth, relentless diarrhea & fatigue, joint pain, no appetite….. I stopped four times during my one-hour drive to work, carried a change of clothes and baby wipes and popped six pepto-bismol chewable tablets a day.  Still, the doctors told me “You’re too young to be sick”, “It’s your nerves.”  Anyway… I’ll leave that rant for another post.  Point is, I’m accustomed to managing & coping.  Through all of the crap (pun intended) I worked two jobs, divorced and raised my kids.  Life sucked though…

Diagnostically, I’m in the weeds as well.  Sometimes I’m not sure which doctor to tell “what symptom” to, and trying to tell everything to all of them is daunting.  Lately I’ve been beginning to think “Why bother”.  With autoimmune diseases the treatments are basically the same.  If one is being treated then the others are often covered.  And it will only help for a while.  And it is often prohibitively expensive.  And it makes me feel bad but I’m more functional overall….  My rant is turning to a whine….

I’m tired of shrewdly managing and I would LOVE to just BE… It’s definitely time for me to go to bed.  When all else fails—sleep.

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Andy Rooney’s Enlightened Perspecitve

I love his special way of telling the truth & conveying the beauty of common sense. May he rest in peace…

ENLIGHTENED PERSPECTIVE

        WRITTEN BY ANDY ROONEY

I’ve learned…. That the best classroom in the world is at the feet of an elderly person.

I’ve learned…. That when you’re in love, it shows.

I’ve learned…. That just one person saying to me, ‘You’ve made my day!’, makes my day.

I’ve learned…. That having a child fall asleep in your arms is one of the most peaceful feelings in the world.

I’ve learned ….That being kind is more important than being right.

I’ve learned…. That you should never say no to a gift from a child.

I’ve learned…. That I can always pray for someone when I don’t have the strength to help him in some other way.

I’ve learned…. That no matter how serious your life requires you to be, everyone needs a friend to act goofy with.

I’ve learned…. That sometimes all a person needs is a hand to hold and a heart to understand.

I’ve learned…. That simple walks with my father around the block on summer nights when I was a child did wonders for me as an adult.

I’ve learned…. That life is like a roll of toilet paper. The closer it gets to the end, the faster it goes.

I’ve learned…. That we should be glad God doesn’t give us everything we ask for.

I’ve learned…. That money doesn’t buy class.

I’ve learned…. That it’s those small daily happenings that make life so spectacular.

I’ve learned… That under everyone’s hard shell is someone who wants to be appreciated and loved.

I’ve learned…. That to ignore the facts does not change the facts.

I’ve learned…. That when you plan to get even with someone, you are only letting that person continue to hurt you.

I’ve learned…. That love, not time, heals all wounds.

I’ve learned…. That the easiest way for me to grow as a person is to surround myself with people smarter than I am.

I’ve learned…. That everyone you meet deserves to be greeted with a smile.

I’ve learned.. That no one is perfect until you fall in love with them.

I’ve learned…. That life is tough, but I’m tougher.

I’ve learned…. That opportunities are never lost; someone will take the ones you miss.

I’ve learned…. That when you harbor bitterness, happiness will dock elsewhere.

I’ve learned…. That I wish I could have told my Mom and Dad that I love them one more time before they passed away.

I’ve learned…. That one should keep his words both soft and tender, because tomorrow he may have to eat them.

I’ve learned…. That a smile is an inexpensive way to improve your looks.

I’ve learned…. That when your newly born grandchild holds your little finger in his little fist, that you’re hooked for life.

I’ve learned …. That everyone wants to live on top of the mountain, but all the happiness and growth occurs while you’re climbing it.

I’ve learned…. That the less time I have to work with, the more things I get done.

Looking for Lost Funds

Nearly every morning I watch Good Morning America and they have been “finding” lost money for schools, towns & individuals.  I will definitely be searching to see if my name pops up & I wanted to share the information in hopes you guys could get lucky as well!

You can go to www.irs.gov to check on unclaimed or undelivered tax refunds.

Also check out:

www.missingmoney.org

and

www.unclaimed.org

Happy hunting!!

Book Nook, old-style

Over the past few weeks  I’ve been observing my life (as a bystander), noting how things I’ve learned have improved where & who I am.  Some of the lessons have been trial-by-fire where I nearly didn’t “get it”; others have been amazing epiphanies.  MOSTof them have come from

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books I’ve read at different points in my life. Seriously.  A couple of them were things I read more than a decade ago(hence the ‘old-style’)  but the ideas & information continued to linger in my brain.

I’ve even had “ah-ha!” moments which caused me to drag out old, dusty boxes & re-read the books I vaguely recalled.  Others sent me to Ebay or Amazon to search like a crazy woman until I found what I was looking for.

Some of my best lessons & experiences have come from the craziest places & the oddest little books!  I want to share some of them, because one of my biggest lesson was to stop trying to change things outside of my self & to realize there were things about myself that were beyond my control. 

Acceptance without resentment is key to success.  After my crash-and-burn descent into illness began, I was bitter, resentful and SCARED.  My whole life was different and so was I–and I fucking hated it!  It took a L-O-N-G time to see that different is okay–and even longer to become OK with my differentness. Eventually, different became normal but only after I’d exhausted myself struggling against it.

I’m going to start with two I read way-back-when (oldies for sure) that I still pull out.  These are books that spoke to me and I’ve found them to be true in my life. Keep in mind, when I began reading these two books I thought they were full of bullshit but read them because I’d paid for them.  Imagine how surprised I was when they actually made sense to me….

Also, let me preface these two choices by saying:  I don’t think my illness or yours is in our heads.  Actually, mine has a distinct preference for the other end…  Anyway! These two books

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focus a great deal on what’s in our heads. For me, I needed the internal attention because I wasn’t being truthful to myself and my denial was coloring the rest of my world.  Also keep in mind that I read these at least a decade before my health crashed.  I used techniques from these books to shape my professional choices.  It was amazingly effective…

*Mind Power into the 21st Century by John Kehoe

I firmly believe energy & matter respond to stimuli beyond what is readily understood.  The more I learn & the more I observe, the MORE I believe it.  Keep an open mind & trust your gut…..Learning to NOT trust the little voice telling you your gut is wrong is key as well….

*Write it Down, Make it Happen by Henriette Anne Klauser

This book helped me tease the reality out of my perceptions; weed out the chaff.  Each chapter deals with an aspect of designing the life I wanted.  I thought it was bullshit, but I was homeless with two kids to raise, living by the grace of my parents.  Let’s face it, I had nothing to lose & all of my bright ideas failed.

Another book I highly recommend is The Road Less Traveledby M. Scott Peck.  This was

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the first book I read which stirred up dissatisfaction with who/where I was. It got my wheels turning & helped me realize there was a life I was missing.  I found this one in the early-mid 1990’s, which is when I needed it.  Funny how it happens that way.

I’ve read a few more I’ll be discussing in future posts.  You’ll recognize some of the names!

REMEMBER:

**When pushed, pull.  Don’t be the source of resistance in your own life.**

author unknown

Adventures in Autonomy

I’ve always had a personal obsession for security:  In my relationships, my financial life & my day-to-day life.  I’d also felt (for the most part) fairly confident my life was “under control”.  I had a home, career & money in the bank; isn’t that the American dream?

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It was–until I got sick, had eight hospital admission and spent three months off work.  For a time, I used credit cards to stay afloat.  My medication co-pays were $1,000 a month so it didn’t take long to max out my resources.  About 18 months later I filed bankruptcy.  Luckily, I was able to keep my home because I had made it a priority to keep the mortgage paid and my old, raggedy car was paid for.  Each person has to decide how he/she feels about the ethical aspect of bankruptcy, but for me–I felt a thousand pounds lighter and had hope for the first time in over a year.

I was able to learn many, MANY things during those two years.  The greatest lesson was seeing the holes in my previous plan.  Here are some of the most glaring ones:

*I had almost no savings.

When I scraped together all of my resources, I had about $750 cash on-hand.  NOT cool.  I’ve since become a fan of Dave Ramsey and his no-nonsense approach to finances and life.  Scrape together an emergency fund of $1,000–no matter what you’ve gotta do.  Cancel the cable, get rid of the house phone, pick up cans/bottles, roll change, get rid of add-ons/extras, downgrade vehicles.  Sell something; quit smoking (yes, I know it sucks).  Get an emergency fund going–you can’t afford NOT TO.

*I had too many credit cards.

Cut them up. Get rid of them.  Pay them off.  Keep one for emergencies, if you must.  ONLY use it for emergencies….

*I was VERY uninformed about the short & long-term benefits available through my employer.

Talk to human resources & find out what’s available and know when it kicks in.  If you miss out on benefits because you don’t know they exist, they are not obligated to pay retro-actively.

*I carried too much frivolous debt & bought lots of shit I didn’t love, want or need.

I’m not gonna preach about this one. Just make sure a purchase will serve a real, valued purpose in your life before you sink resources into it.  90% of what I have is used & I’m very pleased with my home.

*I was lacking in the education necessary to advance outside of my present career role.

In some cases grants are available, employers will help with costs, or vocational rehab. will subsidize continuing education.  If not, consider student loans.  For me, it’s an investment–not a debt.  Had I not sought on-going education, I would be unable to work.  For me it was a no-brainer.

Since having these revelations & recovering enough to work part-time, I’ve set about managing all of them I can.  Finally, I feel like I’m a LITTLE more in control of my destiny again….  Just a little though.

Health challenges, like other unexpected life events, won’t be as overwhelming if you’ve got a little pre-planning under your belt.  I credit my sudden reversal in health with teaching me to create my future. It can be done-trust me…

Muddling & Meandering

I had to take off work today & I think it sucks.  Overall, I’ve been fortunate and only call in 6-8 times a year.  However, I have a job where the whole team suffers if one is missing.  To make it worse, I’m the only one who does what I do when I’m scheduled.  My co-workers understand & this episode will pass; I’m in no danger professionally but I despise forcing them to work short.

On the other hand–I’ve been dealing with this cycle for years, as have those in my life.  My family, sweetie, kids, friends,neighbors….  You know the drill.  The well-meaning questions begin.  The questions are asked sincerely, without snarky implications but it’s the same as last time and the time before and the year before.  When I have to call off work or cancel a visit because I’m not feeling well I would LOVE to simply hear “OK“.

The “What’s wrong?”, “what can I do?”, “How can I  help?”, “Are you going to the doctor?”, “What do you have?”, “Why can’t the doctors get it under control?”  I can hear worry & frustration in their voices but all I wanna do is crawl away and ride it out.  BECAUSE I understand it’s the best option….. It’ll get better & life will continue.  My otherwise-awesome life is intact but on hold.  I won’t let it sap anything else away from me.  I’ve learned to acknowledge, accept, accommodate and move on.  I love the path of least resistance–time spent ranting is time NOT spent recovering…

I sincerely appreciate the concern & expenditure of emotion; However, I feel guilty for being the source of it.  I’m also  exhausted from explaining, re-explaining and reassuring them when I’d really rather go lie down.   When I have these episodes, I feel like my whole body has a toothache and it throbs with each heartbeat.  I have sharp pain in most of my joints & a dull ache in all of my muscles.  I’m stiff.  My eyeballs ache.   I’m tired & muddled cognitively;  I’m nauseated & have relentless diarrhea.  With that being said, I also know it will pass and  I’ll be fine.  I won’t get to cross that bridge until later though.