Hope For The Best & Prepare For The Worst

This is the roughest lesson I’ve learned in my whole life.  I was cruisin’ along doing fine!  I was out of college in my 30’s, new job making three times more than I EVER have, nice home, healthy kids, awesome credit–I was set for the future.  I also thought I was very average middle class; turns out I had a false sense of security & an inflated sense of my own abilities.  Soon I was feeling bad all the time & I scheduled an appointment with my Ob/gyn.  At that appointment he check everything thoroughly and assured me it was not reproductive.  That day I also scheduled with a gastroenterologist but couldn’t get in for nearly six weeks.

In the meantime I was muddling on through my day blindly, usually with a fever of 101 degrees.  I went to my family Dr. and received a short course of antibiotics.  I felt better temporarily but was sick again within two weeks.  In another two weeks I was falling onto the couch as soon as I got home from work with a fever of 102 degrees on tylenol, and sleeping until time to go to work the next day.  One evening I felt even more miserable & I went to the emergency room.  After sitting there sick for hours, I finally got into a room and had a series of tests, pain medications, scans and cultures.  I fell asleep on the ER stretcher and don’t wake up until 5 am, with the Dr. telling me I had an infection in my abdomen and would need to be admitted.  I was so grateful they had found something to treat!  Little did I know what a haul it would become.

I spent nine days in the hospital on IV steroids and multiple antibiotic therapies and was initially diagnosed with diverticulitis.  I was off work for four weeks and tried to go back, but was too sick.  I took off another three weeks and went back for my follow-up appointment.  The Dr scheduled a colonoscopy asap and eventually found abnormal ulcers.  When they were biopsied the verdict was Crohn’s disease and a whole new chapter of fun and games ensued.

I was too sick to work,  had no savings but had two teenagers at home.  For nearly a year my medication co-pays were approximately $1,000 a month, so I was maxing out credit cards just to live.  My little bit of disability insurance wasn’t paying the bills and I had no idea what to do.  I wanted to keep my home and I wanted my life back; too bad I couldn’t find a way to make it happen.  Christmas came and went-we had no tree and no gifts but shared a fantastic meal.  We took the time to realize we were still more blessed than most & I realized I had to come to terms with my “new” life.

After much prayer & counseling, I chose to file bankruptcy.  Not the greatest thing to do but the best thing for us.  Otherwise we would be homeless in just a few short weeks.  Having the debt off of my shoulders was a tremendous relief, then I set about creating a budget which would allow me some flexibility if I had another set-back.  Living beneath my means became my mantra & I saved every nickle I could get my hands on.  The kids grudgingly pitched in (sometimes) and sometimes I had to make an executive decision and piss them off.  Overall it all worked out.

Over a span of three years I  had at least eight lengthy hospital admissions and was able to survive (not thrive) without financial implosion.  Some of the changes I made that saved my sanity & gave me some peace of mind were:

1. I found a part-time job with decent benefits & a comparable pay scale to what I was accustomed to.  That way I could volunteer to work extra when I felt well and could work the bare minimum (2 days a week) when I felt bad.

2.  I found a second almost part -time job which allows me the flexibility to work from home most of the time.  This was a direct answer to a prayer & fell right into my lap.  Keep praying.  I’ve never been let down.

3. Set up a bank account and have your main bills direct debited from the account.  I’m talking about the mortgage & electric bill and whatever you consider necessary for survival.  Before I set this up, my power was nearly shut off.  Thank goodness my sweetie remembered it!  He saved the day!

4. Also set up some sort of automatic savings, even if it’s only $5-$10 a payday. You won’t regret it.

5.  Take advantage of pre-tax medical withholding if available.  Each employer has a different name for it.  Mine is a medical flex spending plan.

6.  Stock up on extra staple groceries-a little at a time.  T-paper, pasta, frozen meats, rice, quick  prep. things for the kids, what ever will store well and help out. When I’m sick I can’t always get to the store so I stock up on a few extra cases of soda.  My fave sicko drink is 1/2 sprite and 1/2 apricot nectar–try it!  I also have a case of protein drinks (ensure or whatever is on sale), packed puddings & jello and other “smooth” foods that slide.  Sorry if that’s a little graphic. I do have folks to help me, but I try to NOT ask unless I’m really strapped.  Let’s face it-none of us want to be a burden or inconvenience to the ones we love.

These are some of the things that helped me make it through and I hope you can benefit.  Out of adversity came a life I’ve learned to enjoy and recognize as my own.

Presenting a Unified Front

For any readers who have  loved ones mired in drug abuse, please join my Face Book Group Concerned Friends Fighting Drug Abuse http://www.facebook.com/profile.php?id=734838176#!/group.php?gid=117517474930176&ref=ts .

I started the group to help maintain my sanity while my two adult children wallowed in drug abuse & addiction.  In just a few months we’ve grown to 227 members & I’m so thrilled!!  I post informational links & sites as well as treatment option & resources.

I would love to see you there!

Medication Side-Effects & Other Thing I Wish Didn’t Exist

Ever since I’ve been diagnosed with this host of chronic crap, I’ve been on a ton of medications; some of them have had miserable side-effects & others, not so much.  In my pre-illness days I used to think people were crazy to take things that caused negative symptoms–now I realize it comes down to negative & negative-er.   MORE negative.  Dammit!!

The unsavory chore of weighing risks and benefits rests soundly on my shoulders. Tolerating moderate discomfort for maximum return is fine, even moderate for moderate is ok. I’m hoping it’s not a situation of trading maximum discomfort for minimal gain, but I’ve pledged to always take a medication for the recommended duration, unless I have a severe side effect. That pledge helps me maintain a strong working relationship with my team of physicians & they respect my opinion when I tell them something ain’t working.

I’ve been on methotrexate for about four weeks now; overall, not too shabby from a side-effect standpoint.  Much, much better than the monograph made it sound, but I may just be one of the lucky ones. However, as my dose grows, so will the possibility of other symptoms.  I took my dose yesterday (it’s a wkly med.) and woke up at 4:00 with a CRAZY, miserable headache.  Super-intense but not a migraine.  My hair has started to thin some but I don’t think I’m going to loose a whole lot; it makes me dizzy though and now the freakin’ headaches.  Whine, whine, bitch, bitch, bitch…I hate Crohn’s!!  I hate Arthritis!!  I hate, HATE crazy medications!!!  I still love chocolate & puppies though, so I suppose I’ll live but for now I’m going to go sleep this headache away.  For my friends who don’t understand–Bear with me!!

If you want to do research on your own, here are some good places to start:



School Days, School Days……

I’m going back to school!  Woo Hoo! I’ve been doing it for years; start and stop and start and stop.  I’m going to finish this time or give up.  I’ve been working on my BSN for seven years with a class here & there so I have several credits accumulated.  I would usually end up putting my education on hold because of a new health crisis or kid-related crisis but I’m thinking I can finish it at this point.  I KNOW I can finish…..KNOW it, KNOW it, KNOW it!!

I will be completing my degree online and I am SO excited.  I’ll be going to  http://www.wgu.edu  .  My original plan had been to attend Western Ky University to complete my BSN then complete the Psychiatric Nurse Practitioner MSN.  Had another health crisis which complicated the process AGAIN so I thought the best choice is the path of least resistance.  Here I go!

My friend with MS is attending the same program with me & we’re going to motivate each other.  We are both feeling the health-related clock ticking & know our years as bedside nurses in winding down.  The only proactive choice is to prepare for employment away from the bedside.  We talked about it (for a couple of YEARS) before jumping in and now I’m looking forward to it!!  Updates later–WGU sounds like fun!

Pictures I Love

Nature in the abstract

A different type of vision

This is so beautiful!  I love the colors & the contrast with the background!

pretty, deadly things

Lions & tigers & bears--OH MY!

The bigger they come, the harder they fall.  No matter what humanity believes–Bacteria rule the world!!

Quiet, delicate, serene

Pretty, pretty, pretty!!

I love flowers!

I thrive on chaos!

Ummm,  pretty colors!

Our Most Powerful Tool

Our Most Powerful Tool!!

Hope you’ve enjoyed my short trek through the world of natural beauty.

Things I Love About Owning Land in the Country

The other day I stopped by a friends’ place for a bit.  She lives in town; has lots of neighbors & a main street out front.  Her little duplex is beautiful & well-decorated.  The yard is a perfectly manicured little postage stamp & she’s as happy as a clam.  She loves being close to work & shopping, so I’m really happy for her……However…..As I drove home the houses became farther and farther apart & I could feel myself start to relax.  As I turned back the little dead-end street I live on, I got excited!  I was almost home! When I turned into my lumpy, bumpy, holey, 0.5 mile long drive way I knew I was HOME.  Lots of trees & rocks & wild plants & wild creatures-LOVE it!!  One of the things I especially adore is going outside and not hear ANY sounds of civilization.  No cars, planes, voices, sirens, phones-only nature.  Deer drink out of the dog’s water bowl & turkeys scratch in the side yard.  I’m not caught up in changing, “improving” or controlling any of if.  I love watching it all unfold around me.

I can learn about my ecosystem and observe how it is REALLY supposed to work!

I’m just sayin’–GO LOOK IT UP

People who start out ignorant and opt to remain that way  gives me a pain in the ass.  The worst part–or ONE of the worst parts is–they usually think they’re being witty and profound.  I yearn to ask them questions until they corner themselves, realizing they don’t have a clue.  Sometimes I actually do it; I’m not a roaring genius but I try to make sure I have valid information before I spread it around like peanut butter.

For goodness sake.  With the availability of information now, it’s harder to stay ignorant than it is to learn!  As fellow humans we have a responsibility to not influence other individual’s treatment choices  based on dumb, random ideas.  Next time  you encounter the local dumb-ass, tell them GO LOOK IT UP!!

I Think I Finally Know How Lucky I Am..

Worked at my primary part time job for thirteen hours yesterday and saw so many SICK people.  I cared for a sick sad lady; she was my age-weighed nearly 400 lbs at 5 feet tall, had lost most of both feet due to diabetes and was now officially homeless……Very sad, down-trodden and without hope.

How many of us are one paycheck or one month–one divorce-one downsize-one health insurance loss away from entering parts of her world? I got off my pity pot & decided it was time to be grateful and count a few of my blessings:

*I have a home I can afford and maintain.

*I am able to support myself comfortably while working two part time jobs.

*All of my needs are met & most of my “wants”.

*I have a significant other in my life who cares for me & watches my back.

*My health is better than most of the people I take care of.

*I have  family & friends in my life who love me and go to bat for me.

Doing what I do allows me to help those less fortunate and see the blessings in my life, no matter how I start out!

But I Didn’t MEAN to Think it Like That!

Have you ever considered how the way we think changes the outcome of what we’re doing??  I read a quote the other day & I apologize for not recalling the source.  It was:  Whether you think you can or you think you can’t, you’re probably right. Also…Either you will or you won’t.  There is no “I’ll try”. When I read them, I knew they were true but at the same time it was a little disheartening.  All of the gray areas I hide behind are GONE.  Either it IS or it IS NOT and we have control of the runaway train…. Dang it….It’s so much easier to be a down-trodden victim!!

I’m not going to climb on a soap box about this one, but I’ve had to stop and look at myself really hard as well.  When I catch myself taking longer to make excuses than it would to start the “whatever it is”, I have to question where my head is.  I’ve found having a glass-half-full attitude makes my day feel a whole lot better and I tend to be more successful.  I’m also more fun to be around.  Nobody wants to hang out with Bad Luck Schleprock.   I’ve found that no matter how sick, broke, tired, frustrated, disappointed, perplexed I am-there is always someone worse and I have more reasons to be grateful than not.   A book that really helped me see this is Mind Power for the  21st Century by John Kehoe.  I read it at least 15 yrs ago and I still pull it out to review it.  Sometimes I need to remind myself that I have a big hand in how my life turns out.   With that being said……Here is my rant about choices and accountability.

I take care of many sick people in my job as a RN.  I am also well aware that most of our deadly illnesses are caused by our choices, not our genes–myself included.   Last night I cared for a 46 year old man with end stage liver disease.  Too sick to work, he had no income or  insurance, his disability claim was newly filed and he was having to live with friends.  As I took his health history he disclosed that he did not take most of his medication because he can’t afford them.  That’s always tough to hear & it’s all too common.  However, the history continued & he stated he smokes 2-3 packs of cigarettes a day ($15) and drinks an 8 pack of beer every day ($7) even though that’s the reason he’s so sick now.   That is a total of $22 daily on vices.  That is $660 monthly; bet the money would go a long way toward medications……Ah…..The freedom to be stupid & force society to pay the tab for it…..

Books, Books, Books….

Since my diagnosis I’ve had PLENTY of time to read & some of the books have had a big impact on decisions I’ve made.  This is the short list of titles I’ve found helpful.  I will update it periodically.  Bet you can’t find the common theme!

Living Well with Autoimmune Disease–Mary J. Shomon

Keep Working, Girlfriend!--Rosalind Joffe & Joan Friedlander.  I sent a copy to my friend Cindi, who is newly diagnosed with MS.  This shout-out is for her–Love ya Chick!!

FibroWHYalgia–Susan E. Ingebretson **Helpful, no matter WHAT your diagnosis**.    Real & upfront-it’s an easy read.  Keep an eye for for a companion workbook.  I’ve heard rumors one is in the works!

The Autoimmune Connection–Rita Baron-Fause & Jill P. Buyon, MD.

ANY financial book by Dave Ramsey.  He starts from scratch & doesn’t assume the reader has any excess resources; trust me-I started from the bottom.  I became critically ill before I was diagnosed and (barely) survived two years of repeated admissions & medication co-pays of $1000 monthly.   I nearly lost my home, my relationship with my kids was traumatized and I had to file bankruptcy.  Why?  Because I lived the “it can’t happen to me” lifestyle.  Minimal savings, no financial plan, active credit cards–the American way!

Also, purchase yourself a pretty journal & a nice ink pen.  Carry it in your bag & WRITE IN IT.  Write anything–daily.  Trust me, it helps.  I keep my to-do list, symptoms, thoughts, plans, ideas–everything in one tidy little spot.  I also made a life collage in it.  It covers two open pages & I originally did it to cover pages I’d messed up.  It has been inspiration though, so now I have a few of them scattered through it.


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