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Making Cystic Fibrosis a Little Easier

I married a neat-freak. I’ve grown accustomed to it, and appreciate it immensely now as a vast improvement over my former way of life. That’s not to say that Beautiful and I haven’t had our fair share of verbal disagreements over where to put my medical supplies to make it easier for me. I’m going to come completely clean with this admission:

If it is out of sight, it is literally out of my mind.

I need visual reminders to do my meds, as I grew up in an environment where a stack or a pile was fine, as long as it was a stack. Over time, my mind grew used to seeing things of non-function in the same place every day. To this day, if I leave something somewhere (say, on the stairs) for more than a day, I will walk by it dozens of times as if it has become a piece of furniture to walk around. That being the case, you can only imagine how hard it is for me to remember something that is put away.

Couch area 1Besides, who wants to drag out your RespirTech inCourage Vest every day? We had to come up with a creative solution. I honestly can’t remember which came first, the vest or the end tables, but I think it was the tables. Maybe Beautiful will fill us in on that in the comments. I posed that if she would let me store it under the end table on the side of the couch I use to work most of the day, I would do it every day. Then came the “discussion” about what to do with the hoses and vest. LOL! It does fit nicely back there, but I have to be careful to not scrape the hoses on the paint on the wall.

We have placed my vitamins nicely on the table where I keep my drink(s) – notice 2 coasters so I can have both a Boost Plus and a chaser at the same time – along with my treasure chest of various pills that don’t go in the daily container. Everything looks nice so far, but it gets even better!

We have a canvas-lined basket on the shelf of the end table that holds both my eFlow and Altera nebulizer bases and my Colistin, water, and needles for my Colistin months. While on the AZLI study drug, I toss my vials in there when they’re done so I can just gather them up in a bag to take back to clinic like I’m supposed to. That ends this week as I get on continuous Cayston… if they ever call me.

Refrigerator medsOn to the refrigerator, because we CFers have a lot of refrigerated meds, too. I used to have more that needed refrigeration, but now I’m down to AZLI/Cayston and my Pulmozyme. We keep a good supply of the Boost Plus in the door, too. I’m up to 4-6 bottles per day now and I’m consistently over 120lbs in the morning now. The first thing Beautiful said to me when she saw me after work today was, “you’re fat!” I love that!

We keep the nebulizer pieces on the counter by the fridge and next to the cabinet that we keep the Albuterol, HyperSal 7%, the saline for the AZLI/Cayston, and extra ZenPep in. We also have keep the extra bottle of Megase in there since it’s a two bottle Rx, but my current bottle is on the counter by the stove so I remember to take a couple of tablespoons when I go to the kitchen to refill my glass.

I didn’t take any photos of it, but in the upstairs linen closest we have a Rubbermaid container (maybe 5 gallons) that holds my extra port dressings, saline flushes, alcohol swabs, band-aids, testosterone supplies, and heparin flushes. We also keep an Epi-pin on the top shelf outside of the box for ultra-fast access if it is ever needed. We did discover that I was growing allergic to cefepime IVs a few years ago, so we keep one on hand now in case anything else develops in a similar way.

Marriage is a lot about compromise, and that includes where to store medication and equipment. Something the average family doesn’t have to think about, but we do. How does your family deal with your medication and equipment? Feel free to post a link to your post if you do one likewise.

Comments

  1. Kristin says:

    You do a much better job now at keeping all of your stuff orgainized and under control.

    BTW…the vest came first. But when it was on the other side of the living room by the chair you never used it. 🙂

  2. Thanks, Babe. You're right! It was over by the chair. Now I remember…

  3. KToogie says:

    I'm definitely showing my lovely man this post, as he doesn't understand and gets annoyed if my medicines are on show. Although he is the messy bugger, I keep the place tidy (the way he likes it!) Think he doesn't understand that it really can be out of sight, out of mind. He says how can that be the case if you've done it all your life! *Already thinking of ways to compromise*

  4. Thanks for leaving a comment.

    I'm glad we could help. It took us 3 years of marriage before coming to such
    a good compromise. This one both works and looks good.

  5. Kristin says:

    You do a much better job now at keeping all of your stuff orgainized and under control.

    BTW…the vest came first. But when it was on the other side of the living room by the chair you never used it. 🙂

  6. Thanks, Babe. You're right! It was over by the chair. Now I remember…

  7. KToogie says:

    I'm definitely showing my lovely man this post, as he doesn't understand and gets annoyed if my medicines are on show. Although he is the messy bugger, I keep the place tidy (the way he likes it!) Think he doesn't understand that it really can be out of sight, out of mind. He says how can that be the case if you've done it all your life! *Already thinking of ways to compromise*

  8. Thanks for leaving a comment.

    I'm glad we could help. It took us 3 years of marriage before coming to such
    a good compromise. This one both works and looks good.

  9. When I was younger my mom kept a “medicine cabinet” for my meds and NEB cups and anything for IVs as well as my brothers’ asthma meds. It really helps  to have meds in the kitchen so that when you eat it becomes a habit of remembering; especially if you take enzymes like me.
    What first attracted me to your blog btw is your name. I like it and how it shows how healthy you are. Then I saw that you have the same mutation I do.
    I like your blogs and look forward to more. : )

    • Thanks. I look forward to having you around more. 😉

      We keep my enzymes and vitamins on our Lazy Susan on our table… and I still forget to take my vitamins unless reminded. I keep my Advair in the drawer of the coffee table that holds our ceiling fan/light remote so I can take it when I turn on the light in the morning and turn it off at night, too.