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Erin Kotecki Vest is BlogHer, Inc.’s Social Media Strategist helping BlogHer make the most impact in the quickly-evolving new media landscape. Erin al...
 
 
 
 

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Starting My New Life As Someone With A Chronic Illness

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I bought one of these 7-day pill boxes today...and felt like the oldest 34-year old in history.

Then I came home and proceeded to fill it up, and felt 50 times older.

My life right now

This is my life right now. 12 pills a day, not including those I only take 'when symptoms' arise or vitamins.

12 pills every. single. day.

Am I feeling better? Yes. Am I feeling like myself? No.

I'm feeling medicated and a ghost of me. A foggy ghost. After 5 days in the hospital and what felt like 300 tests, the doctors are finally in some agreement as to what's wrong with my body.

Gastroparesis.
Diverticulosis.
Gall stones.
Severe reflux.

Those are the big ones. There some other little minor things but those are the answers to the million dollar, tubes up both ends of me, nuclear sandwich eating, xray'd until I glowed, questions.

Not cool

So what are we doing for my broken belly? Medication. Tons and tons of medication. They tell me it will be temporary. They tell me I should be popping these pills for 8-12 months. They tell me this all can be fixed. Maybe.

Right now I'm too foggy to care. But at least I have my handy dandy pill holder to remind me. And my brand newly downloaded iPhone pill app. Alarms are set to remind me to take my meds. They go off 4 times a day. They make my life easier but they also make me want to cry.

But I refuse to cry. REFUSE. So instead what do I do? I get this 34-year old body a brand new tattoo and I threw a kegger at my house. I'm also plotting a trip to Vegas for my birthday if you'd like to come along.

Admittedly there are others out there coping with their issues much more constructively than myself.

@thatwoman tweets "National Invisible Chronic Illness Week! If you have one-blog it so we can all learn." She also has some great resources over at her Tummy Troubles blog.

JoAllison writes about her gastroparesis diagnosis as well, and blogs about the foods she can and can not tolerate:

I've largely been okay physically in this month that I haven't posted. I had about 4 days of a bad time (GERD breakthrough, bloating, constipation, pain, general yuckiness) but I went back on a liquid & yogurt/pudding/ pureed soup diet for about a week & increased the mirilax and it went away, thank the Lord.

Over at "The Road I'm On" there is a comprehensive overview of gastroparesis and all it entails.

Me? I tweeted about my party, because it took my mind off what that ONE beer I had would do to my stomach. Like I said, not nearly as constructive.

But there goes my phone alarm. Telling me it's time to wrap up this post, and take two more pills. All part of my new life as someone with a chronic illness.

Contributing editor Erin Kotecki Vest also blogs at Queen of Spain blog, where she dreams of drinking beer and eating fried foods while debating politics with friends.

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Erin Kotecki Vest 5 pts

because nasal gastric tubes are totally the new HOT item! ha! 

Politics & News Contributing Editor
Queen of Spain ( http://queenofspainblog.com/ )

Mata H 5 pts

Shoot -- I didn't even notice the darned tube until I read one of the above comments. You look like a cute high school kid, ferheavenssake. How do you do that????? Go immediately to Beauty Hacks, do not pass Go. Spill your secret!

~~ Contributing Editor, Mata H. also blogs right along at Time's Fool ( http://timesfool.blogspot.com )

DarryleP 5 pts

In honor of the Jewish holidays, here's something from an old Yiddish proverb:  It could always be worse. 

A few months---or maybe weeks from now , you'll look back on this and have trouble remembering how crummy you felt.  And when you get to be my age, 12 pills a day will seem like a drop in the bucket.

Take care.

http://blog.darrylepollack.com/

Erin Kotecki Vest 5 pts

You hit on something so important...to take care of the emotional side too. Thank you for reminding me. 

Politics & News Contributing Editor
Queen of Spain ( http://queenofspainblog.com/ )

Erin Kotecki Vest 5 pts

but I just started having mild pain where they told me to watch out for pain. So now I am afraid they are going to want me back in the hospital to have it out. We'll see. Luckily so far the pain is not bad at all and I don't have an appointment for a few weeks. 

Politics & News Contributing Editor
Queen of Spain ( http://queenofspainblog.com/ )

Erin Kotecki Vest 5 pts

Some days are much easier than others. Thank you for your kind words. 

Politics & News Contributing Editor
Queen of Spain ( http://queenofspainblog.com/ )

survivor 5 pts

Wow Erin, Great advice you are getting -Now suck it up -do what you need to and count your blessings -I can do you one better 12 pills in the Am and 4 at night plus an Insulin Shot -thought i had gall stones 7  years ago and it turned out to be a Heart Attack -My Dr said I should have known it was coming after all I was a DIABETIC who had just had a TIA (warning STROKE) two years before (HELLO?)-so after the Heart Attack I went to rehab -lost the first 50 lbs -have 50 more to go -go to the gym nearly every day and Belly dance on Wed nights. I will NEVER get rid of my chronic illness but like an old friend I have learned to live with its rude behavior. Some days you are not going to be good but most will be better and better. I like the Vegas idea maybe I will meet you in 2 years for my 60th!!! I was there last year after driving 808 miles solo thru Utah and hiking a little through 3 national parks. It was a HOOT!

robin

The Cavalry isn't coming -save yourself!

Nyn 5 pts

 Having Chronic pain myself for 13 yrs. I believe it is a new you. The good news is although I felt like I was losing "me" I like what I have become. Life is slower and I see things clearer.  Kinda like the whole "don't sweat the small stuff" becomes much more relevant.  Keep seeing the funny side of everything and you will get through it!

Nyn 

   thynynfactor.blogspot.com

GretchenLou 5 pts

I don't want to minimize your challenges here, but you are so lucky as chronic illness go. 12 pills a day!!! That is nothing. You can see the light at the end of the tunnel. In a year, maybe two, you will probably be just about normal. At the least your restrictions will decrease. I know that seems like an eternity from this side. When you get to the other side you will be a more compassionate and insightful woman. Hang tough!

Leighbra 5 pts

Everyone has given you some beautiful advice, but nobody has said....

Where the heck do you get off looking actually sassy and cute in a photo where you have a naso-gastric tube in?!!! That's hardly fair at all! ;) I can see the worry and fatique, but I hope you can see the sass too, because your inner strength just beams in that photo. You're gonna get through this.

Hang in there, the empathy and patience for my chronic illness patients that just a scare with gestational diabetes gave me still affects my work. Here's hoping you see the other side of this bigger and better and stronger (and sassier!).

Julie_B 5 pts

I too have a couple of chronic illnesses and those pills and supplements add up! The one thing I started to do a few years ago was do up my meds 8 weeks in advance. That way I only have to do the chore 6 times a year.

I buy those 3" x 3" ziplock bags from Amazon. I think you get 5000 for like $10.00. I mark them M-am, M-pm, Tu-am, Tu-pm, etc..........so yes, I fill 112 bags in a sitting. I use those office clips to keep a week's worth together.

It makes it SO much easier to remember...because despite your youth, one day you will ask yourself, "Did I take my meds this morning?"

It also keeps the reminders that I am "sick" to a minimum. When I used to just dole out my meds twice a day I would actually get ill thinking about everything that was "wrong" with me. Now, I pull out the day's pills, swallow what's in the bag and go my merry way.

Finally, it works SO SO much better when traveling. You don't have to take bottles and bottles of stuff wtih you. You just take the number of days you need!  I usually take a couple of extra days for those occasions when we may stay an extra day. This habit came in handy when I was stranded a couple of times on a business trip.

HANG in there, Erin! You aren't alone!!!

Julie Beyer
The IC Dietitian
www.ic-diet.com ( http://www.ic-diet.com )

AmyMusings 5 pts

I cannot imagine having a chronic illness and having to go under so much care.

Although I do have one of those weekly pill thingies, too. Please don't let it make you feel old. Let it make you feel in charge. So your mind can ease. It doesn't have the burden of wondering "Did I take everything I needed?" or at least everything they think you need.

I like the idea of having several to get me through the month. What a brilliant idea. I never would have thought of that. I have brain chemistry imbalances for which I take meds and thyroid deficiency. But no tubes. And not 300 tests and a stay at a hospital!

The picture of you with the tube in your nose looks so sad and exhausted. Hugs to that lady!! Hugs and hugs!

XO

Amy

Amy Kehoe

www.amymusings.com ( http://www.amymusings.com )

paulag01 5 pts

You probably nailed the number one reason women don't give themselves the self-care they need and deserve:

"If
it were my kids, I'd be forcing them to lay down, take good care, etc.
But because it's me...I'm not nearly as kind to myself. "

Do your best...and know that being kind to yourself is a sign of strength, not weakness, and those you love will benefit as well.

Much healing and patience, and self-forgiveness and acceptance along this path.

Paula Gregorowicz
The Paula G Company

http://www.thepaulagcompany.com

Learn 5 Steps to Move from Fear to Freedom ( http://www.thepaulagcompany.com/feartofreedom ) (free)

pookielocks 5 pts

hugs to you erin. i'm glad that they finally have a diagnosis for you. at least there is a name for the unbearable pain you've been suffering for so long. I know a bit about the painful gastroparesis disorder b/c i've heard it used in the world of ed (eating disorders).

i too have an invisible illness & have been on meds since age 19. i'm 32. my illness has a lot of stigma attached to it since it's of the mental disorder variety. i'm really just a "normal" person, taking my meds and trying to make a life for myself. you are a "normal" gal too - your body and soul just need to rest for awhile. hugs and let me know if i can ever help!

www.shebecameabutterfly.net ( http://www.shebecameabutterfly.net/ ) and www.msmodern.com ( http://www.msmodern.com/ ) and www.taking-back-control.com ( http://www.taking-back-control.com )

whymomdrinksrum 5 pts

I had the gall stones as well and when I had my rebellious little bladder removed my ENTIRE body health improved. Kind of made me kick my own ass for waiting 5 years to do it. I think the rest of my digestive system and overall immunity was so busy trying to compensate for an organ with a brain-fart that it couldn't do it's regular jobs.

I'm sure you are being well taken care of....and that you've looked at all your options thoroughly. But the doctorate I received from my cracker-jack box tells me that you should see if having your's out improves the situation.

I hope they figure out a more permanent fix for you. Soon.

Holly

http://whymomdrinksrum.blogspot.com/ ( http://whymomdrinksrum.blogspot.com/ )

 Conventional motherhood? You bet it includes rum!

Erin Kotecki Vest 5 pts

"Please be kind and gentle to yourelf" is probably the hardest part of all this. If it were my kids, I'd be forcing them to lay down, take good care, etc. But because it's me...I'm not nearly as kind to myself. 

Thanks for the reminder 

Politics & News Contributing Editor
Queen of Spain ( http://queenofspainblog.com/ )

Mata H 5 pts

I also have a chronic ailment or two that has had me at the doc's this year more than I ever wished. It flippin' sucks. But I have shifted n my perception to value small improvements.

Re the gallstones. Years ago I had them and I bless the doc that did my gall bladdar removal. The pain from stones is unbelieably awful. The joy of never having that pain again is twice as fabulous. If surgery is an option for the stones -- well, it helped me. I'd do it twice if I had to. But hey, I'm not a doc -- I don't even play one on TV.

At least your mystery is starting to unravel. Please be kind and gentle to yourelf. You are worth it! Nurture on, Erin !

~~ Contributing Editor, Mata H. also blogs right along at Time's Fool ( http://timesfool.blogspot.com )

Liz Henry 5 pts

Not anything like the scale you're dealing with, but I did have ulcers for a year or so. It took I think 2  years for me to be able to eat normally and not be in pain all the time. I was skeletal and starving... ugh! But it did get better, so slowly that I could barely tell. 

-----------------

Liz Henry ( http://www.blogher.com/haystackprofile/viewprofile... )

Composite: Tech & Poetics ( http://liz-henry.blogspot.com/ )

lizzard@bookmaniac.net

Liz Henry 5 pts

Heck yes. There's the thing too of thinking, well, if I'm going to get sicker, I better haul ass now to acheive something, quick!

I also of course want to be seen as strong and competent to do anything. But it can backfire a bit when people think things are easy and they say "Oh, you're so strong!"  And I'm thinking that later I'll be paying for my bravado, crying on painkillers, cursing my foolishness, neurotically wondering if I brought it all down on myself by pushing too far, and begging my family to bring me food or rub my leg or whatever.  That's the truth of it! Ugh! 

I think the key is, know you're going to mess up that "balance" sometimes and don't beat yourself up over it, it's part of the normal process to sometimes go 2 steps forward and 3 steps back, and have to scrabble up again. And you might sometimes have to just write off a day and go "Nope, I'm done."

It gets to where you notice other people who are masking some pain or having a hard time. There's sort of a conspiratorial glance that can be very comforting.

Sorry if this is too advicey!

-----------------

Liz Henry ( http://www.blogher.com/haystackprofile/viewprofile... )

Composite: Tech & Poetics ( http://liz-henry.blogspot.com/ )

lizzard@bookmaniac.net

Erin Kotecki Vest 5 pts

It's hard to get used to that 'different' me. But I am. Slowly. 

Politics & News Contributing Editor
Queen of Spain ( http://queenofspainblog.com/ )

dietnewbie 5 pts

I don't really know how you feel, because I don't have any chronic illness. But, I am trying to feel how. It must be hard, but know that you will have the power to overcome it.

Live strongly please,

With Love,

Michelle 

Erin Kotecki Vest 5 pts

Yes, the meds not being forever was a huge boost to my mind and spirit. For sure. Of course, I'm not sure I believe them. 

Politics & News Contributing Editor
Queen of Spain ( http://queenofspainblog.com/ )

Erin Kotecki Vest 5 pts

I feel as though they've done and tested so much and there are actually so MANY things going on, that this 'gastroparesis' was the easy way out. Medicate her, etc. 

Or maybe I'm just bitter I didn't get some quick and easy surgery and it was all over with faster. 

Politics & News Contributing Editor
Queen of Spain ( http://queenofspainblog.com/ )

Erin Kotecki Vest 5 pts

Because for all those times I did suck it up, there are those where I whine and curl up in a ball and ask my husband or kids to help take care of me. Yes, a happy medium would be great. 

Politics & News Contributing Editor
Queen of Spain ( http://queenofspainblog.com/ )

threeundertwo 5 pts

So you are chronically ill now.  What does that mean?  That you are suddenly stupid? ugly? needing pity? a lesser member of society?  No.  It means you have challenges others don't.

While not as young as you, I am too young to be walking with a cane.  Yet I am, and I hate it as much as you hate your pills.  I pity myself because I can't walk all the way through a Target store, but then I go to physical therapy and see the woman who had her legs crushed in a car accident and I think I'm pretty lucky.

It's just a new you, not a worse you, not a less you, a different you.

Whoever said "you're as young as you feel" doesn't know what it's like to sometimes feel 104 years old when you're not.  They also never burst into tears at the DMV when they were handed parking tags that announced to the world that they were disabled.

It sounds like you are in good hands and they've narrowed down a diagnosis.  That is something to be optimistic about and it can only get better from here.  Now you can do some research and arm yourself with information and questions.  I hope the medicated ghosty feeling subsides.

Best wishes.

TW 6 pts

I tend to be a suck up and go forth sort. It vexes me that my mother and sister are not that way at all.  If I could figure the happy medium, that would be good.

~TW ( http://ramblewoman.blogspot.com )
( http://retro-food.com/ )

Retro-Food ( http://retro-food.com/ )

( http://retro-food.com/ )

heathenmom 5 pts

While my chronic illness is not the same as yours, I had a similar reaction when I found out about my disease.  I just felt old.  I saw it as something I didn't think I would deal with as such a young age. I was 23 when I found out about the disease and went on meds just a few years later. 

Take care of yourself.  It is promising that the dr said the meds do not have to be forever.  Hopefully you will be done taking the meds by this time next year. 

Erin Kotecki Vest 5 pts

Excusing myself to throw up in a bathroom was much easier than explaining that I had some things going on we didn't understand just yet. 

Politics & News Contributing Editor
Queen of Spain ( http://queenofspainblog.com/ )

Liz Henry 5 pts

I definitely hear you and... what Catherine said!  It's really, really hard to find that balance between pushing yourself to do things and letting yourself have a ton of rest and down time.  With chronic stuff, you kind of are going to be hurting anyway so why not learn to ignore it and carry on and be as cheerful as possible about it? yet if you do that all the time it's easy to miss warning signals. I can't stand it when people tell me to rest more so that I "get better".  We've got to have a life in between all the resting!

-----------------

Liz Henry ( http://www.blogher.com/haystackprofile/viewprofile... )

Composite: Tech & Poetics ( http://liz-henry.blogspot.com/ )

lizzard@bookmaniac.net

LucindaA 5 pts

I've been chronically ill since I was 24.  I'm 38 now.  I understand how frustrating it is.  How "old" you feel.  You worded it perfectly.

I'm glad you did get a diagnosis.  It is impressive that they managed to figure out so much.  Intestinal disorders are very difficult to diagnose accurately.  You must remain vigilant.  I don't say this to discourage you but rather to encourage you to take charge of your health and your relationship with your doctors.

Like others have said, do give your body time to rest and heal.  Somedays it may feel like 2 steps forward, 1 step back.  Allow yourself to accept help and rely on others.  Perhaps the most difficult lesson I have learned.  I hope it is one you have already mastered.  Take care.

Erin Kotecki Vest 5 pts

I'm not sure though, now that I have had all these tests done, I feel the 'work' is over. And now I need to just get better. 

Politics & News Contributing Editor
Queen of Spain ( http://queenofspainblog.com/ )

Vered 5 pts

My first thought was that your diagnosis could have been much worse. But someone close to me has recently crossed the line into the "chronically ill" too so I think I know what you're going through, to some extent, though obviously not fully.

You are so amazing for sharing your story.

----

Mom

Blogger for hire ( http://momgrind.com/hire-me/ )

Social media marketing ( http://www.socialmediamarketingexpert.net/ ) consultant

Erin Kotecki Vest 5 pts

I'm trying not to go too crazy. And everything (like starting to exercise again) has been with my doctor's permission. 

Luckily the fun stuff only happens once every few months. 

Politics & News Contributing Editor
Queen of Spain ( http://queenofspainblog.com/ )

Erin Kotecki Vest 5 pts

Because I'm lazy and doing them all at once is totally the way to go. 

Politics & News Contributing Editor
Queen of Spain ( http://queenofspainblog.com/ )

Catherine Morgan 5 pts

Hi Erin.  As someone who has suffered with chronic illness since I was 30 (and I'll be 43 this month), I can tell you that you should really try not to over do it (at least for the next few months).  I know you probably think that part of "beating this" is to not let it interfere with your life, and you want to "show the disease" that it's not going to stop you.  But in the long run, your body will heal better if you treat it with compassion and give it what it needs...mental and physical rest.  In the long run, your treatment will be much more effective if you stop pushing yourself so hard to not be sick.  Just try to except that your body is sick and needs time to heal...and then give yourself the gift of that time.

I wish you all the best in your healing.

Contributing Editor Catherine Morgan

at Catherine-Morgan.com ( http://catherine-morgan.com/ ) and Women4Hope ( http://women4hope.wordpress.com/ )

monicad1974 5 pts

I have 4 of the weekly pill things because I get so tired of fixing them. So I fix a month at a time.