Coping with the Tough Stuff Too

5 Suggestions to help you navigate the difficult times.

Strength does not come from winning. Your struggles develop your strengths. When you go through hardships and decide not to surrender, that is strength.

 Arnold Schwarzenegger

You know what? Even the luckiest of us has had to deal with some serious bumps in the road, and if you haven’t yet, you will. That’s just the way life works. I didn’t make the rules – just saying.

Now it may not be your typical ‘take-your-black-suit-out-of-the-mothballs’ kind of stuff, not life-threatening or anything, but a major pothole none-the-less.

Take migraines for instance. Some people still think, migraine – no big deal; stop being a wuss, suck it up, swallow two Advil and get back to business as usual.

In case you, my reader, are a bit backward when it comes to “migrainology” (yes, I just made that word up . . . but what the heck, I live in America!), a migraine is not just a bad headache. It’s a neurological disease – changes your brain, the way it works and everything; one of the top 10 disabling diseases and can lead to stroke and coma.

Now that is tough sh*t right there! I won’t even want to think of dealing with that, yet millions deal with it daily.

I guess what I am saying is that other people’s challenges often seem much more arduous than your own but the thing is, it’s all relative. There’s no comparison. Don’t think for one minute that because I have AIH and you just have a URI, you have no right to be heard.

The ABC’s of Medical Conditions

So, whether it is PMS or CFS, EDS or HIV, SAD or TTH (ABC, XYZ or any of the myriad combinations of letters, if it significantly affects your quality of life; if it sometimes drives you to the brink of insanity/despair – it’s tough stuff. How do you cope?

Here are 5 strategies that have been working for me.

FACTS

Find out the facts, everything you can – all the “WHAT’s”: what you need to know; what to expect; what were the experiences of others; what are some of the things you can do that could help . . .  Punch in a Google search, I guarantee you’ll find something about anything – online communities and support groups, personal blogs (knowing that there are others like you is often reassuring), reliable information from qualified professionals.

Blot out myths and stigmas. You’ll feel better without all the false, scary stuff haunting your outlook. With greater knowledge comes a sense of empowerment and the ability to adapt to your situation.

 

ACCEPT

Accept your situation for what it is – neither a sign of weakness nor a measure of your worth – simply a straight-up fact. Ostomy bag, insulin pump, oxygen compressor, prosthetic breast . . . whatever, is nothing more than a life enhancing medical appliance.

So you wade through the initial feelings of embarrassment, self-blame, guilt, anger, depression; acknowledge your limitations and hoist self-care to a priority position at the top of your list. Don’t resign, simply accept and work with what you got.

 

INDWELL

Get on with living your life. You’ll probably need a little time to adjust but whatever you do, don’t let your situation become the center of your world. Set realistic short-term goals as stepping stones to your ultimate goal – a full and satisfying life.

 

TALK

Don’t get me wrong, I’m not saying that you should broadcast your situation to every Tom, Dick and Harry but when you involve those around you – positive, caring family and friends – it strengthens your support network. I’ve found that generally, people can be quite understanding. The more people who know, the more support you’ll have, the lighter the burden of secrecy.

Secrets are heavy. Feelings of isolation are real. You need a strong support network. Talk about what is happening to you. There, I’ve made my case.

 

HUMOR

Lighten up! A little sense of humor can go a long way in coping with difficult situations. By changing your perspective, humor can combat fear and anxiety. Learn to laugh at life.

Facts; Accept; Indwell; Talk; Humor

The bottom line – have F.A.I.T.H.

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Living With Jen: Coping with the Tough Stuff

My first two months as an ostomate; facing the challenge with a sense of humor.

So, it’s been a while – 8 weeks, 5 days, 5 hours, 11 minutes, since I last posted anything. Yes, I have a dang good excuse. No, I am not getting into it now; enough to say there was a major, medical crisis.

Right now, there is something I’m dying (wrong word choice) eager to tell you about.

I gotta tell you about ‘Jen’ – my newest acquaintance, closer to me than anyone or anything has ever been or will ever be. And I say that with mixed feelings.

Living with a life-threatening chronic disease ain’t no sweetbread and ofentimes the fixer-upper is big and ugly and all up in your face – not to be hidden or side-stepped. Then you have to find a way to face it head on while keeping your pride and dignity intact.

The first time I saw Jen she scared the bejeezels outta me – not at all a pleasant meeting. To say she repulsed me would be a gross understatement. I barely acknowledged her presence, turned my head away and did my darndest to un-see what I had seen; to forget that she even existed – as if that were possible.

‘Jen’ my brand-new, strawberry-red stoma.

You see, Jen is my newest body part (for better or for worse, for richer or for poorer and all that stuff); my brand-new, strawberry-red stoma – standing about 25 millimeters tall and 35 millimeters around. Yes, she takes up a lot of real estate on my belly.

Now if you are like I was before this last crisis of mine, the word stoma will probably take you back to high school plant biology: stoma – one of the pores on a leaf that allows plants to breathe. Well, Jen is not that kind of stoma. Let’s get on the same wavelength here.

When the doctors got done snipping the cancer out my gut, they deliberated, then concluded that my best chance for long term survival was not to try to reconnect the two pieces of intestine that were left. Instead they did an ileostomy. That means they poked a hole in the abdominal wall and stuffed the end of the small intestine through to the outside, so digestive waste products would be able to leave my body via that new route. Gross, I know, but what can I say?

Sh*t happens! Whether you want it to or not.

So, Jen must always wear her little baggie (ostomy bag) and guess who gets to clean up????? Why none other than yours truly. Beginning to see why I have such mixed feelings about Jen?

Jen and I

But she is my lifesaver, so I guess I should be grateful . . . and really I am. Dr. Russ warned that she MAY have to stay with me permanently, but, there is always that possibility that one day we may part ways – dare I dream of it.

Anyway, I am earnestly trying to get along with Jen.

For starters, I named her; sort-a figured that if we were to become intimate friends, we should at least be on a first name basis. That would be a logical first step for any long-term relationship. I mean, how can you live with someone 24-7 and don’t know what to call her?

Yes, my stoma is a ‘she’. I am sure of it – the incessant yammering, the constant compulsion to remind me of her presence, the irrepressible need to voice an opinion on just about everything – especially food. She is perpetually grumbling and squawking about what, when and how much I should eat. If only she weren’t so bossy!

She gurgles when I try to sleep on my back but groans when I roll over on my side; gripes when I bend over to tie my shoe laces and balks about the way I wear my seat-belt, not too low, not too high, just the right distance away from her. If only she weren’t such a stickler!

High maintenance? Definitely. And she has no qualms about butting into my private conversations (the busybody!) – just ask my husband, he’d back me on that score.

We go shopping together, Jen and I, but she doesn’t pay for anything (the cheap flibbertigibbet). The truth is, she insists on going shopping with me – as if I can even stop her – and I don’t mean that she just tags along. She dictates what I should buy! I must select loose fitting blouses – nothing that would make her stand out too much as she is very particular about her appearance (I am too). Pants and skirts must have an elasticized waist – nothing to squeeze too tight, her majesty demands comfort. If only she weren’t so fussy!

The anticipated ‘box with a smile.’ Jen’s stuff was not in this one. Probably next time.

Recently, I’ve found myself shopping online for toiletries just for her, and outfits – comfortable and tastefully colorful – apparel that she can lounge around the house in!

I have to admit though, that shopping for Jen has moved me one step closer to accepting her presence in my life. I think I may even smile when the UPS guy drops ‘the box with a smile’ on my doorstep.

We have become pretty close now. I actually made a few outfits for her myself and enjoyed doing it – coordinating outfits for me and my new bosom buddy and possible life-long pal. Sigh.

Jen’s first custom-made outfit

Jen and I have been together almost 2 months now and beginning to have some good days; days when we’re not bickering, and peace reigns for a couple hours at a time.

I keep trying to learn as much as I can about my stoma and the world of living as an ostomate (someone who has a stoma) – not just knowing, but really understanding the ‘how-to’s and the ‘why-not’s; and being able to look past the ‘what-if’s and shouldn’t-I’s.

Scouring the internet, I was relieved to find that my situation would no longer be considered a true anomaly. In the USA alone, there are over 130,000 ostomy surgeries yearly (I couldn’t find stats for Barbados). A huge community is out there sharing similar experiences. There is even an internationally recognized “World Ostomy Day” (first Saturday in October).

I think I am finally past the sentiment (well, almost) that Jen is one of those ‘dirty little secrets’ that must be kept in the closet at all costs. I am growing in appreciation for all she is doing to keep me alive and well. So what if I always have to foot her bill?

For now, I am thankful we are inseparable.