Making Noises

Image From Health Matters Now

Hi!  I’m a wife, an auntie, a daughter, an in-law.  A writer, photographer, Jesus-lover,  church-goer,  non-conformist,  burgeoning activist, recipe developer, voracious reader, patron of the arts [which is a fancy way of saying I watch way too many movies and TV shows], blogger , pet-lover and volunteer.

Favorite quotes include: “Going to church doesn’t make you a Christian anymore than standing in a garage makes you a car” and like to think that “if church were a washing machine, I would be the agitator.”  (Both quotes sources are unknown to me, by the way).

Writing has been a hobby, off and on, over the years.  I have been blogging since 2008. I write – and have written – on a volunteer basis for non-profits.

But Wait…There’s More

1. The illness I live with is:  Fibromyalgia
2. I was diagnosed with it in the year:  1996
3. But I had symptoms since I was a teenager.
4. The biggest adjustment I’ve had to make is: Pacing myself.
5. Most people assume: Those who don’t know me, assume I am “normal.”
6. The hardest part about mornings are: Waking up and the first few steps.
7. My favorite medical TV show is: House, totally.
8. A gadget I couldn’t live without is: my Magic Bag
9. The hardest part about nights are: Forcing myself to go to bed early.
10. Each day I take __ pills & vitamins. (No comments, please) As few as possible I’m terribly sensitive.
11. Regarding alternative treatments I: have tried a few – some work, some don’t.
12. If I had to choose between an invisible illness or visible I would choose: not sure – is “neither” an option?
13. Regarding working and career: I miss working outside the home.
14. People would be surprised to know: I have problems with telling right from left and am directionally-challenged (two symptoms of fibro.) On the positive side, that I type approximately 80 words per minute.
15. The hardest thing to accept about my new reality has been: Reframing the plans and dreams I had for myself; accept my limitations (still working on that one.)
16. Something I never thought I could do with my illness that I did was: Go on long hikes and snowshoe.
17. The commercials about my illness: Are unrealistic.
18. Something I really miss doing since I was diagnosed is: Working full time.
19. It was really hard to have to give up: Doing things in the evenings–socializing, dancing, taking courses.
20. A new hobby I have taken up since my diagnosis is: Photography.
21. If I could have one day of feeling normal again I would: Work at a job outside the home all day and go dancing with my husband that night.
22. My illness has taught me: Some patience, not much, but some.
23. Want to know a secret? One thing people say that gets under my skin is: “Have you tried X”  as if it is a magic bullet “Well so-and-so does X and it helps her.” And since I can’t limit my answer to one thing, a comment that really got my goat was what someone said to me recently “I know someone who cured her fibromyalgia by diet and exercise.” [um, hello, there is no cure]
24. But I love it when people: Encourage me and ask me how I am doing (and really want to hear the answer.)
25. My favorite motto, scripture, quote that gets me through tough times is:

The fellowship of those who bear the Mark of Pain. Who are the members of this Fellowship? Those who have learned by experience what physical pain and bodily anguish mean, belong together all the world over; they are united by a secret bond.” ~ Albert Schweitzer

26. When someone is diagnosed I’d like to tell them: You are not alone.
27. Something that has surprised me about living with an illness is: how sensitive to sound fibromyalgia makes me.
28. The nicest thing someone did for me when I wasn’t feeling well was: A friend of mine cleaned my house when I hurt my back and couldn’t do a lot of it.  I paid her, but she offered to do it for nothing! My husband does many nice things for me as well.

29. The fact that you read this list makes me feel: Slightly nervous.

30. How I found out about http://gracefulagony.wordpress.com/ (Graceful Agony):  I learned about Graceful Agony’s blog through her blog listing on Chronic Babe’s forum and was invited to join the Graceful Agony facebook group after I had gotten to know Jolene online, through reading and commenting on her blog.  I’m proud to be participating in the first blog carnival for Graceful Agony!

**Portions of this post were originally written in September, 2009 for Invisible Illness Awareness Week and revised for Graceful Agony’s blog carnival.

Image credit: Don, Murfreesboro, TN via Wikimedia

The next edition of the Chronic Babe Blog Carnival asks the question:  The Big Breakdown: When Everything Goes to Hell, What Do We Do?

I suspect everyone would answer this question differently.  I know people that become quiet and contemplative when all hell breaks loose and I know others that do the opposite.  I think it has to do with personality.

Friday July 16th was one of the worst days I have experienced in a while.  Our cat Punkin was diagnosed that morning with kidney disease.  Punkin is 15 and she has been a part of our house since she was 2.  Kidney disease in cats is manageable but incurable.   To add to the stress of the day, we were scheduled to be out of town camping with family for the weekend and had to be there by 5:00 pm that evening to attend a function together at 6 pm.  The only appointment open at the vet was at 3:00 pm  and we had to meet with him and the vet clinic staff to discuss treatments. We also needed to finish packing a few things yet and drive approximately 1 1/2 hours to our destination.

Punkin eats a treat. "No amount of time can erase the memory of a good cat, and no amount of masking tape can ever totally remove his fur from your couch." - Leo Dworken

How does this relate to the blog carnival topic?  During this day from hell, here’s how I made it through.

1. I cried. I let the grief wash over me for a while–spent time sobbing my heart out. Throughout the weekend I tried not to hold back when tears threatened.
2. I reached out. First, I telephoned my sister-in-law to let her know what had happened and to advise that we would arrive late that evening. I proceeded to then contact my husband, my best friend and others with the news.
3. I asked for help.  I asked my husband to call to see if the vet could find some time in between patients to speak with him, as I was too distraught to talk coherently.
4. I took action. I finished as much of the packing as I could manage.
5. I researched. Since I like information about what I have to deal with, I researched feline kidney disease on “Dr. Google” and, at the vet appointment, asked him questions.
6. I focused.  I worked with my husband as a team to “get ‘er done”.  After the vet appointment, we grabbed food to eat on the road, raced home, and on the vet’s advice, took Punkin with us.  We finished packing, which now included what Punkin needed for the weekend.  Once we arrived at our destination, we dropped the RV off at the campsite, did the minimum set up to make Punkin comfortable, and high tailed it to the play.
7. I prayed for rest and for Punkin to be healed.

Note that not all of these were deliberate steps taken on my part to cope, to be honest I was on auto-pilot, but helped nonetheless. Did my symptoms still flare?  Most definitely.  Did my husband and I both wish we had no plans that weekend except  margaritas in our hand that evening and a friend to make them for us? Without A Doubt.  Yet, the weekend’s activities served as a distraction from our “new normal” – owners of a cat with a chronic disease.    Things have come full circle now – I, who needs occasional caregiving (the “caregivee” if you will), have now become a “caregiver.”

And I’ve now realized that, much like my own chronic illness, “my husband and I are in this together” and I’m doing my best to

from Wikipedia: Keep Calm and Carry On was a poster produced by the British government in 1939 during the beginning of World War II, to raise the morale of the British public in the case of invasion. It was little known and never used. The poster was rediscovered in 2000.

Chronic Babe’s http://www.chronicbabe.com/articles/843/latest blog carnival asks “Who’s on your team?”  Here’s my answer.

It takes a village of care when you’re chronically ill.  Here’s a special shout-out to some of the members of my “team”:

Randy, my selfless husband. He picks up the slack, works full time, and loves me endlessly.  “Don’t kill yourself” my husband often says when I mention doing something.  And I try to heed his advice. But the less I do, the more he has to, and I have difficulty handling the guilt.  He already does so much!

To be held in the heart of a friend is to be a King.~Bruce Cockburn

Our friends Perry, Darrell, and Steve are always there to help when we need some “heavy lifting” – moving furniture, auto repairs, renovations, etc.  In addition, they are great listeners with beautiful hearts.

Cher is my best friend and like a sister to me.  She is totally awesome, good with knives, there for me, cares and listens and doesn’t just tell me what she thinks I want to hear but rather what I need to hear at the time [and I can say the same to her.]  And we’ve both got the freedom to be ourselves and call each other on our “shit.” I’ve come to realize how rare a friendship we have.

Medically, I want to give huge props to those on my team in the “Healing Arts”:

Chiropractors Greg and Rochelle,

My physiotherapist Adeline, and

Our massage therapist Brina,

all of whom are authentic, kind, and compassionate.

My fitness buddies Debbie, Lilya, and Jane -  we’re called  “The Dream Team” by Jane  – whom I’ve taken the same fitness class with for over 10 years, we get each other through the class, support, laugh, lift up and encourage.  “Absolutely” ladies!

Kevin, whom I’ve known for over 20 years, and my husband’s known since our marriage, is a true friend (he even traveled 1 1/2 hours to visit me in the hospital once after my surgery) and always makes me laugh.

Last but not least, the communities at the Graceful Agony Facebook group and Chronic Babe helps with the isolation one can feel being chronically ill.

Hope you’ve enjoyed the introduction to my little village.

Image from http://weheartit.com/

Parenting and Chronic Illness is the theme for this edition of the chronic babe blog carnival. See http://www.chronicbabe.com/articles/836/ for more information.

I don’t have the mommy gene.  I’ve never been bit by the mommy bug. Oh there was a brief moment in 1987 or so when I was holding a co-worker’s newborn that I felt something that might be a maternal stirring but that was about it.  I blamed that on PMS. I’ve rarely been around children (except for when I was one myself.)  I’d not been pressed into babysitting as a teen or young adult.

My upbringing sucked.  See http://www.bignoise-enterprises.com/blog/?cat=310 for more on that.  How could I be a mom when I had no consistent mom model?  When my own mom died when I was a little girl?   I didn’t have a clue what kind of a mother I’d make given the lack of role models in my life and was terrified to find out.

I still tend to shy away from children but enjoy being around them when they’re older, like after they pass puberty.

My first marriage ended in divorce and I thanked God we didn’t have children. After my first marriage finished, I lived in poverty for a while and couldn’t always afford to feed myself.  I worked but had too much month left at the end of the money.  Sometimes all I had to eat was potatoes. [Which probably explains why I have food insecurity today but that’s another blog post.] That’s not exactly a healthy diet for anyone never mind a child.

When I met the love of my life, he and I discussed children prior to our marriage and decided we didn’t want any.  I was diagnosed six months after we married.

Still, I guess I am a kind of mom.  I’m “mom” to a fur baby; our spoiled rotten cat.  It’s a good thing she’s cute as she is very vocal and demanding when she wants something (kind of like me some might say.) She’s a senior now so requires a bit more care.  Look here http://www.bignoise-enterprises.com/blog/?p=671 for How to Give A Cat A Pill. There are times when, after I’ve cleaned up her vomit for the third time that day, fed her, given her medication for her arthritis and constipation, I’m done.

To be honest, had we had children of the human kind, it would be unfair to them, my husband and to me to be a chronically ill mom. Children are a huge responsibility – I hardly felt qualified, never mind up to the challenge. And, when I hear of parents’ busy, non-stop lives with children –the constant go, go, go:  soccer, hockey, piano lessons, church events, school outings, and the like, I am so very grateful we made the choice to be childless before I got sick.  I don’t know how I would have survived otherwise.

image from we heart it

Laugh and the world laughs with you, weep and  you weep alone – Ella Wheeler Wilcox.

Chronic Babe http://www.chronicbabe.com is hosting the next Patients for a Moment  blog carnival on May 5th.  The topic is:  What’s your most laugh-out-loud illness-related experience?

I love to laugh and have an awesome sense of humor. Sometimes, though, it’s tough to find something to laugh about when you are challenged by living with fibromyalgia, which I was diagnosed with in 1996.    This preamble leads me to recall some LOL Moments:

• In 2009 we went with friends to our city’s zoo.  I decided to rent a wheelchair so that I could last longer and enjoy more.    Little did I know how “tippy” this wheelchair would be.  My friend Steve was pushing me at the time and decided to take the chair on a run at a bit of an incline to get over it.  I was nearly spilled out of the chair in the process.  Fortunately I didn’t fall out but we all had a good laugh as the wheelchair spun crazily.

• I used a wheelchair for the first time in 2008.  My husband was my pusher when I toured the Rock and Roll Hall of Fame in Ohio and Wrigley Field in Chicago that year.  I wondered what people may have thought when they saw that I was able to get out of the chair.  (I pondered exclaiming as  I stood up:  “It’s a miracle!  I’ve been healed!”)

Me being in chairs enabled us to spend more time at these attractions.  It also conserved my energy and reduced my pain levels.  Intellectually I know this.  Emotionally I fight the stigma attached to being linked, however ephermally, to a mobility device.

I prefer to get around under my own steam, even if I run out of it.

Grand Rounds on April 27th is being hosted by www.chronicbabe.com.  The theme is “ladylike.” http://www.chronicbabe.com/articles/833/

I ponder whether it’s possible to be ladylike with a chronic illness, or if the two terms are mutually exclusive.

www.thefreedictionary.com has the following definition for Ladylike:

 

 

Like or befitting a lady in manners and bearing; refined and fastidious.  Adjectives include refined, cultured, sophisticated, elegant, proper, modest, respectable, polite, genteel, courtly, well-bred, and decorous.

Before I was diagnosed with fibromyalgia, I was told by one co-workers wife that I looked like I just stepped out of the pages of a fashion magazine.  I was quite the fashionista – I dressed in the latest fashions, wore high heels, had impeccable makeup and hair, and enjoyed it.  Part of that had to do with being healthy and part of that was being in my 20’s, single, with a bit of disposable income.

Now, my ladylike femininity seems buried under the chaos of living with a chronic illness.  It’s in there somewhere, but it’s a huge challenge to dig it out, dust it off and put it on.

Sometimes the standard definitions for what is ladylike just don’t cut it on days when:

• digestive issues conflict with public decorum,
• allergy attacks leave you with a nose that drips and eyes that run [“How do you like me now?” I asked my husband after one such attack - - a question that shows  I felt distinctly un-ladylike],
• the pain and fatigue are bad enough that only a curse word will cover just how you feel,
• wearing restrictive clothing hurts, and
• to style your hair leaves you almost breathless with pain

On days like that, I want to let the expletives fly and have a “pajama day.”  But I try to pull myself together by lunchtime, if only for the sake of my husband, who deserves to see more of that side of me, and less of the other.

Having a chronic illness can blow ladylike out of the water.  The challenge is not letting it. If anyone has that figured out yet, I’d love to hear from you in the comments section.

After I was diagnosed in 1996, I continued to work outside the home for as long as possible, mostly in part-time office jobs.  After a while, through a series of layoffs and the like, it became apparent that working wasn’t working.   In a last-ditch effort to attempt to work for someone else, I sought out the services of a placement agency specializing in finding jobs for the “disabled.”   This turned out to be a big mistake.  The agency’s workers treated me with condescension, had no respect for individuality, and tended to put every one of their clients in the same “box”.  It was like they had a check list – oh you have _______ disability, well these are the only jobs you can do.

Well, no-one puts me in a corner, to paraphrase the line from “Dirty Dancing.”

A critical analysis of obtaining employment through this agency led me to the following conclusions:

• It would be difficult to predict how you would be treated by your manager, your co-workers, etc.
• Privacy about your medical issues would be tough as there would already be knowledge within the company that you were being placed by this agency; ergo you have some form of disability.  And people like to talk.
• Also challenging to ascertain, it seemed to me, was how long your employment would last.  If the economy took a downturn, who would likely be the first to be laid off?
• But perhaps more importantly than any of this was the fact that, between weekly medical appointments and self-care activities, I required total flexibility in my schedule, something that working for someone else would be less likely to provide.

So I left this agency and started a home based business with my husband doing web design (my husband works full time in I.T.), and writing, both of which are very part time.  I’ve also put together a cookbook for those who suffer from chronic illness and pain.

Now as I awaken feeling stiff and sore, I no longer groan silently to myself and wonder how I’m going to get through the next few hours at work.  In addition, I have the freedom to schedule work around managing my illness, rather than having to schedule the management of my illness around work.

Don’t get me wrong, to admit my limitations, accept where I’m at and how much I can tolerate, and to figure out how to work within my limits was not easy, nor was it without sacrifice.  I struggled for years to acknowledge these facts.

There will always be financial concerns due to added medical expenses, and I carry some guilt over not contributing financially, but try to remember I give in other ways by doing the lion’s share of the home-keeping. I may not bring home the bacon, but I do know how to cook it!

While I do miss some aspects of working outside the home, I remind myself that I am doing as well as I am health-wise because I’ve chosen a different path and I therefore have more time and energy to manage my health.   I’ve also been able to volunteer and that’s cool because I like to help others and it helps me feel like I’m contributing.

A fellow chronic babe told me, many years ago, that having a chronic illness was like having a part time job.  Truer words were never spoken.

I’ve participated in my second blog carnival.  The Chronic Babe  http://chronicbabeclub.ning.com blog carnival, hosted by www.fibrochondriac.com

http://www.fibrochondriac.com/2010/03/07/a-carnival-of-our-own/

[On the Chronic Babe forum, I'm known as KD since there are two or three other people that belong to the Chronic Babe forum with the same name as me.]

My submission is this entry:

http://www.bignoise-enterprises.com/blog/?p=553

Behind the lens

or holding a pen,

my pain disappears,

it seems to end.

The focus required

for both to take flight

robs my illness of power

it seems to take flight.

Such creative endeavors

I forget I’m not

the girl without illness

the girl who’s fraught.

A sick chick no more

as I walk through that door

‘cuz a creative i.d.

has a hold of me.