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Posted on 25. June 2010

You Know You Are in a PIDD Home When…

By Kris McFalls

Families dealing with a chronic disease live with a lot of medical paraphernalia.  Between treatments, however, many of those same families long to appear, “normal.”   They don’t want the look of a sterile medical environment; they simply want their home to be sterile.  There are, however, some clues that you are about to enter the home of a primary immune deficient (PIDD) patient.

You might be entering a PIDD home if:

Instead of a doorbell, there is a Purell® dispenser in its place. 

You are greeted at the door with an ear thermometer and asked to open your mouth and say ahhh!

Your coat is hung on an IV pole instead of a coat rack.

All household odors, good and bad, are masked by the unmistakable scent of Lysol®.

You find the kids playing doctor with a real blood pressure cuff and stethoscope.

You reach into the fridge for a soda and accidentally grab a bottle with the word “human” on the label. 

Just put it down gently and grab a glass of water instead.

You find out the little round disks you thought were Tiddlywinks really came from those bottles with the word “human” on the labels.

The bathroom reading material consists of a copy of IG Living instead of People magazine. 

Instead of pictures on the fridge, you find a letter from an insurance company with a big red smiley face and the words “preauthorization approved” highlighted.

Instead of a medicine cabinet, they have a medicine closet.

You find a bottle in the bathroom that is labeled sinus rinse where the cup dispenser used to be.  Good rule of thumb, don’t drink out of it.

They have a green garbage can marked trash, a blue can marked recycle and a red one marked biohazard. 

Many families feel normal is a state of mind.  PIDD families are no different.  So tell us, what is normal for you?  How do you keep your family safe without scaring friends and relatives away? 

 

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Categories: Life With IG

Comments (14) -

Matt Hansen, D.P.T.
10:04 AM on Friday, June 25, 2010

Excellent work Kris! We all need to look at the light side of our challenges sometimes. The ability to take a step back and find the humor and irony in a situation is a gift that we can all use. Too often, the gloomy side of our troubles overshadow that perspective.

Amy
10:42 AM on Friday, June 25, 2010

Too funny...and TRUE!  

I think "normal" is a relative term.  My kids grew up having IV nurses in the house every 14 days, and having all kinds of medical paraphernalia around.  And, yes, especially when they were younger, we were viewed by our small community as being "different."  But, it taught them to be non-judgmental of others, and they have grown up to be very compassionate people.

People generally just think I am fussy about keeping my house clean.  My family knows that if they (or their children) are sick, nothing personal, but please don't come visit me.  Since I was diagnosed before I had children, who are now 19 and 20, they were simply raised to be careful.  From the time they were in grade school, they knew that they had to take off their shoes, wash their hands and face, and change their clothes as soon as they got home.  They were very good about making sure their friends took of their shoes and washed up too!

As far for my friends, and even my kids friends, I think we have all learned that the old adage is true:

"Be who you are and say what you feel, because those who mind don't matter and those who matter don't mind."   ~Dr. Seuss

Joanna Tierno
10:48 AM on Friday, June 25, 2010

After a difficult week here I needed a good laugh!  So many of these are actually true. My fridge is thankfully well stocked with immune globulin and I do have 4 receptacles in my kitchen-regular garbage, paper, bottles & the red Biohazard in the middle.  My other supplies are often also usually easy to spot since they don't fit in a medicine cabinet and I do get immune globulin every day.  IG Living magazine, IDF Advocate& the Courts Expert by Richard Isham is the reading material in my bathroom.   I don't worry about weirding anyone out.  Most people tend to be in denial about my illness anyway so a little reality won't hurt them!   For holidays I even dress up my Igi V bear with different holiday hats  Smile

Laurie Hope
2:55 PM on Friday, June 25, 2010

Unfortunately, my household isn't probably as sterile as it should be.  I keep trying to get my houseband to understand putting the dishes in the dishwasher and washing them is better than handwashing them. More sterile.  Its hard to get my family to understand. And I don't have the energy to clean everything myself. Mostly its just my husband and I (and our two dogs who go outside) at home, except for occassionally when our bommerang kids come home for a stay, and/or bring the grand girls over. Because I make comments like please use the dishwasher, or They call me a "germaphobe". But fotunately for them, they don't have to worry about all the stuff I do. And they don't have to take these treatments.  I try to sterilize everything just before my treatment. But that really is th extent of sterilization in my house.  I keep getting sick with upper respitory infections, and now rashes on my hands and arms. I have been on antibotics pretty consistently since February. Any ideas on how I could educate my family more, and get them to pay attention, about being more conciencous (sp?) about cleanliness?  Any ideas about what more I could do?

Donna
6:34 PM on Friday, June 25, 2010

I live alone, so I don't have as many issues of people at home maintaining really clean/sterile environment. However, I do work in a huge office building with many people.  I am blessed in that I have successfully transferred my PIDD management to the work place.

Everyone knows to Purell when they get things and put them back on my desk.

Everyone knows where to find the Chlorox wipes (ha!).

I find gifts on my desk of Purell and Chlorox wipes...

During the times of outbreaks of illness each year, everyone has taken to telling other people to go home & stay home so that no one else "like Donna" gets sick. I have so many people talking & protecting me that I rarely have to do it myself!

Having PIDD has taught me how much I am loved by my extensive work family. They have learned to live with my PIDD and do their best to ensure my workplace is a safe one!  Working in an enclosed office environment with over 145 people in it, well I can only say I am truly blessed!

Cheryl Haggard
8:10 PM on Friday, June 25, 2010

May I add:  I always joke with my friends I have the most expensive butter dish on the block as this is where we keep Molly's Vivaglobin and Caleb's Gammaguard.

Let's keep on laughing out there folks!!!

Carolyn
9:26 PM on Friday, June 25, 2010

I am new to all of this.  I completed my 14th treatment of Vivaglobin  subcutaneous last evening.  Yes, we have a new little plastic chest of drawers we roll to the den for the treatment and back to the living room on the other side of the piano  so no one sees it if they come by. I am happy to be reading this blog and hope to learn more with how others deal with these treatments.  It is hard to believe that I have to do this the rest of my life.  I am a Physical Therapist Asst. because of needles, If there were no needles in Nursing I would have been a nurse.  I am asking myself now?  How did this happen?  5 subcutaneous needles a week, 3 allergy shots a week and a B12 shot each month.  Last week on Thursday I got all 9 shots in one day, WOW.  It is nice to know that I am not in this alone.  I will be reading this often and learning from all you Pro's ! Thanks for this Blog!

Suzanne Colville
10:19 PM on Friday, June 25, 2010

Guess I'm a veteran by now since I've been on IVIG for 6 months now.  I'm up to 40 grams and it has been wonderful not to be going from steroids to abx and back again constantly.  I have severe asthma/COPD and the entire month of May was awful, but then we went up to the 40 grams and I'm doing pretty well on that.  This Blog is a wonderful idea, thanks Kris for all that you do for us.  I'll be checking in regularly.

Sandy
6:51 AM on Sunday, June 27, 2010

Thanks for the laugh Kris...I was so down yesterday and so was my friend, this really put a smile on my face.  Any gotta go clean up all my med supplies off the kitchen table. LOL

Chrystal Byrd
11:15 AM on Monday, June 28, 2010

Too funny!!!  After 19 years together, my husband finally washes his hands when he comes home from workSmile

You can also tell you're in a PIDD home when there are...

pictures of your nurse's dog on your mantle...
more than the average number of frozen dinners in the fridge 'cause you are too tired to cook on a regular basis...
2 magnets on the fridge holding up info on the next IVIG conference0...
both kleenex, hand-sanitizer, and Clorox spray in more than 4 rooms in your house...
empty syringes (less the needle) in the bath toy bucket...
one or more "blown-up" latex-free gloves laying around somewhere...
days when the kids go straight to 'your' IVIG supply kit for the bigger boo-boos...
2 things permanently folded on your couch:  your favorite infusion pillow and blanket...
no vegetebales in the drawer in the fridge because it has been renamed the Vivaglobin drawer...
medical supplies in your stash that you have no clue what to do with...

Have a good one everybody!
God Bless!

Chrystal Byrd
Philadelphia, PA

nynah mason
4:10 PM on Monday, June 28, 2010

Hello Fellow PIDD Folks,
     Oh, that I had the energy to provide a sterile environment!  For better or worse, it appears that my own bugs are the most frequent bugs trying to scuttle the ship so maybe it doesn't matter much.  My supplies are stashed in a nice tapstry suitcase which is a good camoflage and keeps everything together.  Currntly nothing needs refrigeration so I've reclaimed the frige.  My "red" containers are behind closed closet doors because I don't need to be reminded; CVID follows me everywhere.  Keep up with the humor, please!  (When I stop laughing I'll lose my coping strategy!)

Shauna
4:44 PM on Tuesday, July 13, 2010

Kris,thank you so much for the effort to educate those of us who love and care about our friends with IG.  We don't mean to be insensitive in our comments or questions and this dialogue helps us to try and wrap our minds around a situation unlike anything we have experienced.  Please keep up the great work!

Linda Thornrose
8:38 AM on Friday, June 01, 2012

A scripture says "Laughter doeth good like a medicine" and I am laughing!  Thanks!  Knowing there are others who share in the battle helps because so many do not understand.  I also suffer with another 'invisible' disease, fibromyalgia & chronic fatigue, so I really appreciate the support IG Living offers.  What a blessing!  I have had a decent nearly two months and am almost giddy with so many 'good' days in such a short period!  God bless all of you out there.

Shawn F
6:31 AM on Friday, February 15, 2013

I enjoyed poking fun at our disease.  My mother still calls my treatment my blood transfusion. LOL

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