Starting My New Life As Someone With A “Chronic Illness”

crossposted at BlogHer.com

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.

Comments

  1. Is that a Peppermint gel I see in your pill box? Just wondering as I give to my Mom who has an easily disturbed constitution. Don’t know if it helps she doesn’t live with me, but I make sure she has 2/day.

    Chronic illness can be hard to deal with. But you may be lucky to only have intense treatment for a short time and then be able to move onto “emergency only” meds.

    Wishing you the best of health real soon.

  2. I am so sorry that you have to go through all of that and deal with all the medications and the pain, and im sure the hassle. I am a 30yr old mother of two (@mccammon1) and I can honestly say I know how you feel. I take about 9 pills every day, and will for the rest of my life. (http://mccammonclan.blogspot.com/2009/08/another-trip-to-er.html) I hate having to remember to take all the pills, the schedule, and when I have problems, I too end up in the ER, and that’s when my stomach, kidney & liver goes all out of whack and i need pain meds.
    I wish you all the best, hope that you heal sooner than what they are telling you, and I hope that you and your family are getting the best care possible!!!!

  3. I just hope I heal. Period. It’s not a given. Which scares me.

    pop that’s magnesium I thin that you are seeing. No peppermint

  4. You are at the beginning, which can be the hardest place to be. Take it one day at a time. I hope you begin to feel better soon.

  5. I was born sick. I have a bad heart. I have always taken meds. But three years ago my last open heart surgery did not go well. I have a chronic pain problem now. Plus as I get older my heart gets new symptoms which require new meds.My Dr calls me his elderly 30 year old.I hope that you heal from this but if you do not you will find a new “normal”

  6. I was a precocious child, so I got an old people’s disease (arthritis) when I was 14. I’m 29 now and much better at looking after my body and learning to deal with my limitations and most of the time my disease is dormant, but I’ve forgotten what it was truly like to be 100% agile and pain free. I feel it sometimes and it catches me by surprise.

    On the other hand living with a (mostly-invisible) chronic disase for 15 years has helped me develop high resilience and resourcefulness and has meant that I am unable to furnish my husbands’s bouts of Terrible Harrowing ManFlu the sympathy and respect he feels they deserve.

    I went through my own share of stomach problems (stress-induced hiatus hernia that resulted in abdominal pain and reflux so bad that it had eroded my aesophagus) and disguisting medical tests, so here’s a story that made me laugh at the time and that might lift you, a little.

    I was not quite nineteen years old and like you I had a 7 day pill container and about 3 pills I had to drink before/during each meal – daily- and was expected to keep up this regimen for at least six months. So there we were at the breakfast table – me and my cohort of pills and my 92 year old grandmother who had that year, for the first time in her life been told to take a single pill to help regulate her hypertension.

    Grandma: Oh this is so tragic, it’s unbearable.
    Me: (putting on a brave face) Oh, don’t worry Granny. I’m fine really, and I only have to take these medicines for six months.
    Grandma: No, dear, I was talking about me. Isn’t it so tragic that I have to take this hypertension pill every single day and that I will surely have to keep taking it for the rest of my life. What if I become an addict?

  7. You might just need to cry and that’s okay. Do it in the shower. Then pull on your big girl panties and move forward!

  8. i am so sorry for you. be brave and strong !!!

  9. Hey, what’s the Viagra for? That seems like an unusual treatment option.

  10. Having just started travels down the medical road with a melanoma diagnosis, I’m definitely feeling you here. I despise the unknown; I need some sort of definitive time frame, exact numbers…control. But no one is letting me have those…stupid lack of guarantees.

    Hope the meds help you feel better and that you can eventually get off some of them (or all!).

    At least there’s an App for this. =)

  11. Meep and owwie. That story about the 92yo gramma is pretty funny!

  12. Uh, yeah. Welcome to the joys of not dying young. I am so sick and tired of pills. My list of ailments reads like an elderly person’s chart! It’s just ridiculous. I got my pill holders when I was 42. I guess it was great I got to wait that long. But, I don’t have one weekly box. I have 7 daily boxes. The weekly box was not large enough for my needs. The single ones I have are split in two sections, I think for AM and PM but I use it to separate the 3600 mg of fish oil from my other pills. I just cut down on the number recently- I had a whole episode this past spring that was CAUSED by pills given to me by dr’s. It was sheesh and drama, but in the end I am vowing to get off pills!!! Most of mine now are supplements. I also carry around a huge bottle of herbal cholesterol meds I switched to after the spring debacle. I’m supposed to take one with every meal, 3 a day (problem: I don’t eat 3 ‘meals’ a day). I’m currently taking ~looks in box~ 10 pills daily, plus the 1 per meal, plus a sleeping pill nightly, plus last week I had dental issues and ended up taking antibiotics twice daily and pain meds as needed (not at work). I need that iPhone app. I take my regular pills in 6 different batches. Too bad I don’t have an iPhone!

    ~I feel ya sister. You gotta keep on truckin’ on, and keggers and Vegas IS the proper response! Toss in a drunken naked run down a deserted beach, for me, ok? Live it up while the living is good. This is IT!

  13. I’m sorry.

    While my own health issues are not as debilitating, I do have several “old people” issues. Yes, I am 37 years old and take the same high blood pressure medication as my 86 year old grandmother. We even have matching pill boxes, similar to yours. When I get my eyes checked next month, I swear I will smack the bitch up if she tells me I need bifocals.

    Here’s hoping for a future of ANSWERS for you. Enjoy the “combo” buzz at your Kegger. Hey, it’ll numb the pain of your new ‘tat, if nothing else.

  14. Hi! I see you linked to my blog (The Road I’m On). Thanks for that. I didn’t realize my paper on gastroparesis would be so popular! That said, I hope you are doing well today. Adjusting to gastroparesis is hard. I’ve had it almost two years now. If you have any questions let me know, I’m more than willing to help. Oh, and I love the pill organizer picture. I’ve got three of them (1 for first thing in the morning, one for AM/PM doses, and one for bed time dose) and I have little ones for Zofran and my afternoon dose of Reglan. They are so helpful.

  15. They found my diabetes when I was 32 and pregnant with Declan, and then my sleep disorder close after that. I take 8 pills at night and 3 in the morning, so you beat me by 1. BUT I ALSO HAVE TO DO NOSE SPRAY SO THERE! AND AND AND I am 4 YEARS OLDER THAN YOU.

    Seriously. Hugs.

  16. AND. Remember the guy who works for me. You are MUCH better off. CHIN UP.

    YOU CAN DO THIS!

  17. I so feel you…and like how you’re coping. Truly. As I blurted all over twitter and Momocrats tonight, my 20-year old was diagnosed with ulcerative colitis last week. This week they piled diabetes onto that. Yep, my ADHD incredibly talented funny hyperactive drummer will now be managing diabetes and UC while going to school full-time, studying drums, and doing gigs.

    The diabetes threw me for a complete loop. They say it’s hereditary, are calling for me and Ms. Dancer to get in there and be tested.

    Perhaps I should do a tattoo in honor of uninsured chronic illness. Rachel’s littlle ‘bill’ might do the trick. 🙂 Or a tree with sugar plums dangling on the end, hiding a unicorn behind it.

    But I digress. I am truly glad that you’re on the road to recovery/management, even if it means having to have a pill app and a med schedule. It won’t stop you. You’re unstoppable.

  18. all your comments are so inspiring!!!!!! everyone, thanks for the stories. seriously.

  19. Love the tatoo!! And ya know, anything that makes life a little easier can’t be all that bad, right? And considering how many years you have left in your life, 8 – 12 months of pills isn’t all that bad either, right?

    Just keep living life!

  20. So not what you want to hear, but you get used to it. It’s what we do.

    I had one at 14, but said screw it and kept the pills in my pocket.

    And Jerry’s!!

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