Traveling in England (with an ostomy!) and thinking I’m really funny…

So here we are screaming through January and at the beginning of week #3 already! I want to blog more this year and focus on real life tips and less about anecdotal stories (and random postings as demonstrated with photo above). I’ll likely do a combination of both since I tend to write without too much forethought and enjoy sharing fun photos. When I think about trying to deliver informative content, I lose my momentum. I want to be a resource but also address the everyday kinds of questions I get asked all the time. I also want to be an example of keeping it light. All this is oh so serious most of the time as it is. It’s better for me just to start writing and see what comes. Life continues to toss challenges at me and I’ll continue to share them.

My goal is to write once a week and I think I can do that. I also came across all of my years of journals and my daughter challenged me to write a book about living with an ostomy. The idea of a book is daunting but I do like to tell a good story and I have plenty of funny, sad and challenging ones to share.

I’m starting the year healthy and feeling powerful after shoveling snow! Each time I exert myself in ways that stretch and challenge my abdominal muscles, I have a little concern in the back of my head. That, and a little voice saying, “awe yeah, that’s me with my ostomy – shoveling snow – I can do anything!” It’s become a joke with my daughters that I can do anything even though I have an ostomy. You see, I’ve been showing my girls their whole lives that I can do anything with an ostomy. It’s now taken on a new meaning, as if the ostomy itself has given me the power to do anything. Rather than being able to do things even though I have an ostomy, they joke that I can do all these things because of it. It’s become funnier as the years go by. Today I hauled boxes around as I get ready to move and I could hear my daughter’s voice in my head, “you see Mum, you can even lift heavy boxes with an ostomy!”

I have lots of packing to do and I’ll pull out some journals to share some “Notes From the Hospital Bed”. Stay tuned!

Here’s an excerpt:

A San Francisco cable car holds 60 people. This blog was viewed about 2,200 times in 2011. If it were a cable car, it would take about 37 trips to carry that many people.

Click here to see the complete report.

This is the not so welcome sign on my hospital door the week of Thanksgiving…

No sooner did I finish the previous blog post about being in the hospital during holidays did I start to feel a little “off”. I landed in the hospital after collapsing with sudden dehydration and the need for several bags of IV fluid and total isolation for being contagious. Wouldn’t you know I’d write about being in the hospital on holidays and end up there until Thanksgiving Day. I got sick on Monday and my blood pressure dropped so suddenly that I couldn’t sit upright without falling to the floor. My doctor called ahead to arrange for me to be admitted because I’ve had this kind of depletion before. It definitely sets you back emotionally but I felt safe and cared for being *NPO and on anti-nausea meds while I rested. My first “full liquid” meal was on Thursday. I was discharged at 4:30pm just in time to be hungry enough for dinner and before the deli closed on the way home. We were able to stop for some take home turkey and mashed potatoes.

*(NPO) is a medical instruction meaning to withhold oral food and fluids from a patient for various reasons. It is a Latin phrase which translates as “nothing through the mouth”.

It got me wondering…what food do you crave when you are NPO?

During my final year of illness with Ulcerative Colitis before I had my surgery to get a permanent colectomy, I was puffed up from steroids and doubled over miserable, living in my robe and forcing a smile as I prepared for the holidays. It’s strange to remember who fatigued I was and how much energy it took me to do the littlest things.  I woke early every morning all amped up on synthetic energy from the steroids.

After several days of extreme pain with cramping and hours either in the bathroom or collapsing into bed,  it became clear that I needed to be hospitalized. My girls were 4 and 5 at the time. It makes me cry now remembering them walking beside my wheelchair as I wore my new Christmas robe. I had stayed home long enough for them to open their presents and could still smell the fresh Barbie smell on the hands of my daughters as held my face and said, “it’s O.K. Mummy”.

Looking back it wasn’t OK. It’s never OK to have small children be fearful of their mother’s well-being and have to sacrifice anything for their parents. It just shouldn’t be that way and as a mother, it causes extreme depression having to miss any moment of your children’s milestones.

This photo was taken when I was hospitalized for a bowel obstruction a few years ago. I cringe when I think of how many times my lovely daughters have walked through my hospital room doors, smiling and loving and wishing we all weren’t there.

My daughters are resilient and they are champions of my wellness but I still wish none of it had to happen. They are 18 and 19 now and we’re approaching Thanksgiving where they’ll come home from college and feast and sleep. I plan to be the healthy host but am careful in the days leading up to any event that causes extra stress. I usually need more rest and have to be very careful what I eat. I get all “chicken and rice” minded and start fearing vegetable trays.

I’m awake right now because I’ve been sick tonight and can’t sleep. I’ll need to rest today and hydrate since I’ve lost more fluid than normal and need to be ready for family happy cozy-ness. I have a my sites on a big family dinner and plan to eat ONE brussel sprout to eliminate the possibility of a blockages. I’ll take small bites and savor the moment of being together.

Related articles

• “Idol’s” Casey Abrams: Ulcerative colitis doesn’t dictate my life (cbsnews.com)

Free People puts the fancy into footloose trousers.

Know your rise and try these on for size…

Rangers High Rise Wideleg Jean – Rise: 10″

Holy Flared Legs Batman! Easy does it sister! These Wideleg Jersey Pants are taking flare to a entirely new level!

Zippidy doo da day! Isn’t the front of these High Waisted Pull On 10 1/4″ rise jeans pleasing?

I stumbled upon this spontaneously as I was feeling sad tonight.  I was literally thinking about missing people I love and feeling apart from any connection. I was feeling lost and needing some creativity.

Draw cartoons, art, brainstorms, anything.

It made me feel better.

Give it a shot.

No one needs to see it but you….

I don’t feel blue anymore.

I stumbled upon From up North’s inspiration galleries where they present their findings from the wonderful world of design. I love this quote by Elizabeth Kubler Ros. I love thoughts and words that connect us. Might try a few of my own artful pairings…stay tuned and happy Wednesday.

My typical fall wardrobe: Leggings, Huge Sweater and bright handbag held by bent elbow as a shield for my ostomy. Life is a battle, and fashionable gear is essential. More soon on the latest doctor bags and CAPES!!! Today, let’s talk about the Maxi Skirt. I have worn my black maxi dress down to a house dress then it was reduced to a nighty but I can’t give it up. I simply love the way it covers all and enjoy lifting the hem a bit when I descent the stairs.

I found my Matty M Black Maxi Skirt while scrounging at Nordstrom Rack ($88 down to $23.98!), but they are everywhere. Mine has a fold over waist line perfect for extra coverage over the pouch. Then I found this nifty video to show me how to wear it (the price range is the typical “Whaaaa? Who would ever pay that!?!?” but focus on the style suggestions. I definitely have a slew of floppy flowy tops chosen to craftily cover my ostomy. Swishy sheer tops and floppy sweaters should be dandy with my new Maxi Skirt.

Read on about Maxi Dresses and click to watch the slide show courtesy of Refinery 29

View Slideshow

The first step to wearing a maxi skirt is to pump yourself up—you can wear them (yes, even you shorties!), and they look awesome on you! Feeling better? Great. Now, comes the hard part—just how do you wear a maxi skirt? With the wrong blouse, shirt, or top, a maxi skirt can transform you into an Amish prairie-woman schoolteacher. But with the right styling tips, you can look effortlessly glamorous in this season’s hottest separate. So, we present six tips on how to wear maxi skirts. Here’s how to do it. By Connie Wang

It’s ridiculous. I should know what those numbers mean.

Having an ostomy and the complications that have been a part of my journey land me in the exam room more often than I’d like. Recently it was for abdominal pain. An ER visit, CT scan and hefty co-pay later and no answers. That, and I still don’t understand what my blood pressure reading was.

I decided to GOOGLE it and commit to understanding it once and for all.

Courtesy of the American Heart Association, here’s what I’ve found:

Blood pressure is typically recorded as two numbers, written as a ratio like this:

Read as “117 over 76 millimeters of mercury”		SystolicThe top number, which is also the higher of the two numbers, measures the pressure in the arteries when the heart beats (when the heart muscle contracts).
		DiastolicThe bottom number, which is also the lower of the two numbers, measures the pressure in the arteries between heartbeats (when the heart muscle is resting between beats and refilling with blood).

This chart reflects blood pressure categories defined by the American Heart Association.

* Your doctor should evaluate unusually low blood pressure readings.

Which number is more important, top (systolic) or bottom (diastolic)?

Typically more attention is given to the top number (the systolic blood pressure) as a major risk factor for cardiovascular disease for people over 50 years old. In most people, systolic blood pressure rises steadily with age due to increasing stiffness of large arteries, long-term build-up of plaque, and increased incidence of cardiac and vascular disease.