Monday, June 21, 2010

Finally LIVING with CF: Is This a House or a Pharmacy?

As many of you know, Ronnie and I just started living together. You hear stories all the time from married couples about the adjustment period when you first get married. I must say, we haven't had any real issues thus far (let's hear it for the honeymoon period...woot woot), but there was one thing that did make me snap (in a minor, fleeting sort of way). Having just moved in, our house is still in a state of organized chaos. For the most part, things are where they should be, but there are occasions where we'll find a random article that is misplaced. Sometimes it's that it was thrown into a box with unassociated stuff, so it got unloaded in a room it shouldn't have been. Other times, we will have set something down and totally forgotten about it.

Well, as I was going around trying to clean up and organize a few weeks back, I kept finding Ronnie's medicine and/or treatment paraphernalia. We're talking, empty vials from his albuterol, atrovent, and pulmozyme on the floor (in Ronnie's defense, just missed "shots" into the trash can); neb cups and tubing under my sink and in my shoe organizer; Albuterol and Atrovent packets on the desk; inhalers on shelves; more neb cups and tubing in the closet. After picking up empty vials on my hands and knees and finding several clusters of meds all over the house, I snapped (and again, I use this term loosely, I really didn't get THAT bent out of shape). I told Ronnie that I love his CF, but hate living in a pharmacy. I (probably not so) kindly asked him if he could please make sure all his meds, nebs, and the like made it to the medicine stash in the kitchen.

Needless to say, I still have some adjusting to do when it comes to the CF life. I'm totally fine with the fact that there are tons of medical supplies and medicines in the house, I just don't want them strewn all over every room.

Do you guys ever feel like your house has become one big pharmacy?

**Side Note: We were in the settling in process. Ronnie would have picked up the misplaced items at some point in the near future, so me copping a 'tude was probably not needed.

Comments (34)

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Lol! CF or no CF, a lot of men I know have this habit. Welcome to Marriage, the place where your differences are used to build character and reveal what you're really made of! Just make sure to tell Ronnie about the stuff that bothers you right away (and vice versa). Better to get it out while you can talk about it calmly, than stuff it until you blow up! That is one of the best lessons I've learned in 15 yrs of marriage.
1 reply · active 772 weeks ago
Ah welcome to the real living with CF. I'm sorry to say but as hard as Ronnie may try, there will be ampules left on desks, and enzymes strewn about the kitchen, or a tissue forgotten in the seat cushion on the couch. As hard as we CFers try to keep our "Pharmacy" contained --with a million and one things on our mind, there will be causalities. But if it really bugs you maybe you and Ronnie can organize his meds together so you ALSO know where everything is supposed to go. That way when a causality does emerge you can place it back in its home, rather than 'coppin' a tude' -- i'm sure Ronnie would appreciate that.
2 replies · active 772 weeks ago
My wife and I have been trying to come up with a creative way to keep my Vest out where I normally use it, but also have the option to hide it when we have company coming over. Like you, Mandi, she doesn't mind that it is out, but medical equipment main function is not to be aesthetically pleasing. This annoys her (and me to a lesser extent). I'll let you know what we come up with. By the way, I too miss the garbage can often and have had this very discussion with my wife. :-)
3 replies · active 772 weeks ago
We have the same problem at our house! I try to come up with decorative ways to “hide” all the medicines. Cute baskets on the end tables, the vest under the end table, and many storage bins in the linen closets.
3 replies · active 771 weeks ago
My hubby doesn't have CF, but I had some similar issues when we got married. My biggest pet peeve was clothing sitting just outside the hamper or hanging out the side of it. If you have the time to get it NEAR the hamper, why can't you actually get it IN the hamper!?!?!?!
1 reply · active 772 weeks ago
I'm not a CFer, but I have asthma, and I'm always finding ampules I missed trying to shoot into the trash laying around.
Practice makes perfect, eh? Plus "You'll always miss 100% of the shots you don't take". Keep up the amped basketball ;-).
since my kids are too young to take charge of their cf yet, i feel like i am the one responsible for the mess i create with all the meds! and yeah... i miss the basket a lot too. as for organizing our pharmacy/home - we have a cabinet in the kitchen, one of the end tables in the living room and 1-2 shelves in the linen closet all devoted to medical stuff. i'm sure it'll only get worse as they get older!
I really think I have 3 kids - the oldest being 41! =) My husband leaves stuff all over - does not matter CF or not! My son is the one with CF. I am currently in the process of designing a cabinet to hold his vest and nebs so that I do not have the equipment sitting on my end table in the family room for the next 18 years. Love the stuff, but it really does not match my decor! =)
The trash can is right beside the vest and hoses and yet my 11 year old cann't seem to hit the round hole at the top (hahaha).
To get my daughter's vest out of the way and keep it off the floor. I placed a cup hook in the wall and got a thickly padded hanger for it. And hung up in the family room like an objet d'art (art object) rather than hidden away.
Lee Bombardier's avatar

Lee Bombardier · 772 weeks ago

Even tho Lauren is 19 (almost 20) she is the biggest slob going!! We affectionately call her the "hurricane" because that's what every room in the house looks like when she blasts through! Our house does resemble a pharmacy and I can empathize with you about the empty nebs, vials etc. strewn around. I just scoop them up everyday or two as I am constanly reminded that it means she is doing her treatments. I think maybe it is part of the "Cf personality" to be a little sloppy cause they are so busy living their lives, doing all their treatments etc. and know people like us will clean up after them cause they are just so damn cute!! Hang in there Mandi and happy cleaning!! Lee B.
All the CF related stuff can be overwhelming. What we did was get a small fridge (like you have in a dorm room) to put most of his meds in (like Tobi, insulin, etc.). At times it got hard for me to open the fridge to get the milk and have CF hit me in the face...so this is a much better solution for us.

Oh, and be careful if he drops the caps from syringes on the floor...those things hurt if you step on them! :)
Well, I guess I'm pretty lucky. My husband is really organized and his meds. are for the most part in one area. Since we are older (53 and 51) we each have our own closet. We have designated one bedroom as his treatment room and that's where his meds. and equipment are. The meds. go on the shelf in the closet, The Vest sits atop a TV tray, the treadmill is in there, and the trash can is directly in front of him for the used tissues. : ) The only time he does treatments outside this room is when he does his Cayston, which is done in "his" bathroom. When a new shipment of medicines come in, I try not to let it sit in the living room too long. One of the tricky things is the storage of the Pulmozyme and Cayston. Since they both have to be refrigerated it's sometimes a little tough to fit everything in. However Cayston is only every other month, so it's not that bad. I do understand, though, about the home seeming like a pharmacy. There are just so many drugs, but I guess we are blessed to have them. AND once in awhile I do notice a stray ampule on the floor NEXT to the trash can. LOL!!!
Courtney leaves hers laying around all the time but I will deal with it since she is only 6.5 yrs old at least she is doing them right? :) As far as her vest and every thing else it used to be in her room so it was out of the way but now it's in the play room on a shelf. You can see it when you walk in the play room but oh well life goes on I just go right behind her and put them up...
Out of 100 "shots" made by me with vials and vial tops, only about 20 make it to the trashcan. I find these things all over the place. I try to have a trashcan next to me when I do treatment, now that my dog likes to chew on them, but before it was just a running joke in my house. My dad probably hated picking them up when trash night came, but he never showed it!

And as for a pharmacy? People tend to comment that *I* am the pharmacy, not my house. It will take getting used to, but I know you can do it. :]
I just bought a cabinet a few weeks ago to be my breathing "station." It was marked as a bedroom nightstand, but it's more of a chest. Two doors with a drawer on top and a pull out writing tray. So the compressor is in the chest, Altera is in the drawer and I can stash the nebs in there between treatments. Cut holes in the back of the chest for the wiring. Laptop also now lives in the chest. Vest sits on top but that's OK with me. I can "hide" it on the floor if company's coming. It's so simple I can't believe I didn't think of this years ago! I've also been pricing the dorm fridge; Cayston is pushing me over the edge on refrigerator space.
This was a big issue in my house growing up- the problem is, with having so many meds to manage, sometimes we have to resort to a "in sight, in mind" approach. Leaving the neb machine on the couch as a reminder for afternoon nebs during Oprah, leaving the ADEKs out on the kitchen counter as a reminder to take the 2nd one with dinner, etc. I have finally gotten better at throwing away "dead soldiers" like empty vials, but the rooms of my house are sorta peppered with inhalors, enzymes, vitamins, as I need them thru the day. I have found cute places in each room to keep them, and that has made my house a little cuter and less pharmy. In my living room, I have a brown basket that has my o2 SAT monitor, my EFlow machine, and a bottle of enzymes. In my kitchen, I leave the enzymes in the middle of the kitchen table, and occassionally add a bottle of vitamins. The blood pressure cuff is on top of the microwave. (to remind me to take it before my coffee in the morning.) Bathroom is a medicine free for all, as medicines need to feel free. My bedroom has a hatbox where I put all my b.s. though hiding my bipap got too time consuming. Though I hate having it out.
PS my pet peeve is that TOBI, pulmozyme, Hypertonic saline, and now cayston in the practically see through tubes. REALLY? Do I really need to hunt with my eyes at sleepy time for a see through tube? This contributes to my leave-behinds at a rate of 200%. Plus, they could be pink.
Ha, Ha. Mandi, this made me smile. Yes, this is marriage! My husband is healthy, and his stuff is still strewn everywhere!! Doesn't really matter what stuff it actually is - yours just happens to be medical paraphernalia. My son is 14 months with CF. One-third of my pantry is where I keep the medical supplies. With all the breathing paraphernalia you just mentioned, along with broviac & g-tube supplies, oh, and oxygen & all its junk, I have to keep it organized. There's just no other choice. I keep the "back up" meds & the machines in the pantry - and stuff I use maybe just once a day. The several times a day stuff (inhalers, enzymes, etc.) I keep in an easy to reach cabinet in the kitchen. I don't forget - maybe that's part of being the caretaker and not the patient - I just don't forget. I have a laminated schedule on the fridge along with my phone set to alarm at enzyme time & meds time. Except for my nebulizer cups air-drying on the counter, you wouldn't know it/s practically a pharmacy at this house unless you opened the cabinets or walked in the pantry. One of my other sons has asthma so he also has inhalers, and 2 of the exact same inhaled meds! The older son does not have CF - it's incredibly important to keep them separate! They are stored in a plastic container with their names on them. I hope to teach all my boys as they grow put this stuff where it goes, just like everything else they own. My 7 year old does well. My twins (including the one with CF) are 14 months, so they are too young to learn right now. But soon!

Let me know if you find a cure for the leaving random stuff everywhere :)
Like someone said, Welcome to marriage. Before my transplant storing meds started becoming a hassle in my room. I found a nice tv stand with two doors and shelves that became the shelter to my meds. I never was able to find home for my feeding tube supplies and formula. But I no longer have that issue since I have to only do pills now. I have 4 weekly pill boxes that I fill up every month and put in a drawer in my vanity area. I then just dump away all of the empty bottles. My night table drawer has my blood pressure cuff and stores my aerosol for those once a year moments I need an aerosol. And Ultrase has a home in my vanity drawer as well as a vacation home in one of the kitchen cabinets since we have a 2 story home. I am not sure how adjusted my husband had to get with me and my meds, but in my defense he was messier at times than I was with my missed shots. I suggest you try different methods until you find the one that works best for both of you. I used to let the ampules pile up on my nightstand and throw them out at the end of the day :)
lol...me and my boyfriend live together and I am the one who is annoyed with all the medications and medical supplies, and I am the one with cf. We live in a one bedroom apartment and when I get sick I don't feel like moving around much and so my med supplies kinda lay where they are set down until I get around to them. I am home oxygen all the time and he doesn't mind the tubing running through the apartment but I can't stand it, then again, I am the one who is always getting caught on everything...lol...the life of a cfer is very interesting and chaotic at times.
Having CF, I get annoyed with it myself! There's always tubing and machines and ampules everywhere. I'm a plug hog too! Just about everything has a CF machine plugged in and there are cords everywhere. My counters in my kitchen are taken up with baskets of meds, sterilizers, sanitizers, etc. It's cluttery and annoying! But, if it's put away in the cabinet, it doesn't get done. So, in the meantime, it's out, in my way, and on my nerves. Adam says he will make me a big desk unit (or something) that will have holes in the back for the cables and everything will fit neatly inside. Welcome to what it's really like living with a CFer. :)
i don't like to see all my Pharm stuff everywhere.. just another reminder, but sometimes, out of sight, out of mind... and WE have to be REMINDED to do the treatments... whether we want to or not.... having the stuff readily available and out makes just one less thing we have to "deal with". I can understand about the missed vials in the trash, though... maybe he can just make more of an effort to pick them up WHEN he misses.... at the time when he misses, not days later. I miss all the time, but make it a point to pick it up when I miss since I will be the one picking it up later anyway... and I really don't like messes all over the place. Maybe you can ask him what PET PEEVE he has of you and then BOTH try to please the other by "adjusting" just a little.... I'm sure there is something that bugs him about you... although, Mandi, you're probably perfect! LOL! jk.... seriously... Marriage really is about communication, respect and adjusting the annoying little habits that become BIG issues when not addressed at the time. Trust me... Good Luck! I'm sure you'll figure it out sooner or later, hopefully, sooner!
1 reply · active 770 weeks ago

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