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Posted on 18. March 2011

IG Living Fan Spotlight - Kelly Clardy

By Trudie Mitschang

There are many websites and blogs for those with chronic illness. While trolling the Internet recently, we came across an essay by Kelly Clardy titled “Am I Normal?”

Kelly writes: “If I have a big party or wedding to attend, I am resting up until the event so I am sure I will be able to go. After working a full time job, it’s all I can do just to eat dinner and get ready for bed. If I go out to dinner on a week night, I spend the rest of the week in bed by 7 p.m. just to make up for it. And don’t even ask me about housework. Getting through the daily stack of mail can be challenging enough. Sounding normal yet?”

Kelly’s wit and biting humor got our attention. Here she shares a little bit about her life with IG Living.

IGL: Tell us about your diagnosis.
Kelly: I was a healthy child and didn’t have any health issues when I was young. When I turned 25, I was suddenly sick all of the time, pneumonias and hospital visits constantly. I went through many doctors (primary care physicians, ear nose and throat doctors, allergists) until I found the right physician who knew what I had in the first five minutes and did the testing. So after 12 long and sickly years, I was finally diagnosed with primary immunodeficiency disease (PIDD) at the age of 37 and have been receiving intravenous immune globulin (IVIG) at an infusion center for three years. I have a host of other serious diagnoses, but PIDD is the big one.

IGL: What do you say when you find yourself in one of those frustrating “but you don’t look sick” conversations?
Kelly: I have those conversations pretty much daily. I have a co-worker who loves to tell me every day that I “look fabulous and not sick at all!”  When I feel that someone isn’t acknowledging my illness, I have a tendency to talk about it even more. I want to drive home the fact that I am sick until I’m sure they’ve gotten it. But I can go the opposite direction too. In response to that “normal” essay, a girlfriend said, “Wow, I had no idea you were so sick!” And my first response was to say, “No! I’m not that sick, really, I’m fine!” Not true of course - it’s hard even for me to wrap my head around it sometimes.

IGL: You mention in your essay about taking time off work for treatments. How have co-workers responded?
Kelly: My days for IVIG are always on the calendars at work, but they don’t always remember. I try to remind them, but I still get requests to take my laptop to the infusion center and answer emails or to take urgent conference calls from there. When I first told my boss (a former emergency room trauma nurse) that I had to be out one day a month for IVIG, she said, “Can you just get it on your lunch hour and come right back?” Um, no.

IGL: Finish this sentence:  If time, money and health were no obstacle, I would…
Kelly: I’d promote PIDD education and awareness. I feel our community desperately wants to be heard. Everyone knows what the pink ribbons stand for. I want that same awareness for zebras. I want local support groups in every state, a fundraising walk and IG Living magazine and Immune Deficiency Foundation materials automatically given to every single patient who receives IVIG. And the second more guilty pleasure would be to open a no-kill animal shelter with a focus on kitties! At least for me, kitties make chronic illness easier to handle. A favorite quote from a Scrubs episode: “Give me a box of kittens, stat!” Amen. 

IGL: What advice do you have for others?
Kelly: Reach out to as many patients like yourself as possible. They are truly the only ones who “get it.” This disease is a roller-coaster ride with ups and downs, and it’s good to have others there for you when you hit the lows.

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Categories: Fan Spotlight

Comments (8) -

susan watkins
10:24 AM on Friday, March 18, 2011

Every word you speak is true and so relatable.  I think that if I had to choose one thing that I most dislike about having a primary autoimmune disorder is the uncertainty it creates in your life.  How many dinners, movies, dates with friends, family get togethers, holidays, etc. have you had to sit out and bail out of at the last minute...  so disappointing and demeaning really.  You know that not everyone believes that you really wanted to go.  

I really, really want to attend the PID Conference in June in Arizona.  Well, I might as well just take the money for the plane, room and conference and store it away.  Then when the time comes to go and I can't handle it, I can just go and burn up the money.  I know that I do not have the stamina to do it.  Yes, I might be able to get myself there, but then I would likely have to stay in the bed for the next few days.  Too ill to attend the conference about my illness.  That's irony.

Your words are so true, no one really gets it unless they have been there.  

Sue
11:33 AM on Friday, March 18, 2011

This blog is an excellent description of what patients with PIDD have to deal with on a daily basis.  I have a motto where I do what I can as much as possible on my good days, and try not to think about the other ones.  
I have to infuse for two days every second week and spend overnight in the hospital, as my rate is very slow, due to one incident of acute renal failure when it ran too fast.  I also suffer with nausea, itching, hives and sometimes wheezing during my tx.
The frustrations that I deal with are not only with well meaning friends and relatives.  It is extremely frustrating to deal with healthcare staff that do not understand why I am there (for my infusion), and I am treated as though I am there for fun, and I am staying in the hospital because it is enjoyable. As you all know this is the furthest from reality!  The nursing staff do not understand that this is a lifesaving treatment and think that I would do fine without it!  They should give their head a shake! I have been infusing for 7 years on the same unit, and tried to deliver educational materials, hold educational meetings, to no avail.  I can think of a million things that I would rather be doing! (including working in my career that I had to give up due to infusion and recovery time,and of course other disabling effects of PIDD)  After my infusion I recover after a couple of days and live my life to the fullest each and every day, spending time with family and friends, travelling when I can, volunteering my time helping others with this and other diagnoses on IVIG, sewing, outdoor activities when I can, etc. etc.
I hope that the healthcare community here (with the exception of my immunologist) becomes more aware of this disease and can develop a better attitude to patients on IVIG.  I am sure that there are many that are very knowledgeable,helpful and understanding unfortunately they do not practice where I infuse.  
Perhaps it would help if Patient Organizations or Physician specialists spoke at nursing, and Phyisian conferences and schools of nursing and medicine to bring more awareness regarding PIDD and life with PIDD.

April
4:06 PM on Friday, March 18, 2011

Great article.  I can relate to all of the comments.  PIDD has definitely turned my life upside down, impacting my career and uncertainty about the future.  I am thankful for IVIG because I am now at least able to function.

Betty
4:53 AM on Monday, March 21, 2011

Kelly's blog is superb

I want to note one wonderful difference I see betwen her and those of us who are older (I am 64).

I call it Oh those lost years!!

Her story is my story- almost exact to the age when I started getting sick and was diagnosed with everything but what I had.

The difference- I had to leave my teaching job at 48-49 after constant peneumonias bronchitis and sinus.

Diagnosis by a great ENT (who wants to learn allhe can about PIDD) age 57 after a failed sinus surgery and 2 other MD's who refused to believe my ENT when he asked them to test me.

We are starting to get MD's attention and that is wonderful!!
  
But oh those lost years!

As a post note, IVIG helped me but I must say Hizentras ubq  has made the biggest  difference in my energy level and ability to do those extra (normal)  things.
Betty

susan watkins
7:16 PM on Thursday, April 28, 2011

Betty,

So far you are the first Zebra I have heard from that is my age.  I know there are many out there, but I guess I've just missed connecting.
'oh, those lost years' could be my mantra.  It is sad looking back and realizing how much has been lost, but most would say it is nothing more than a negative endeavor.  I know, I know.  I can't pretend none of it happened...  Reflection is just a part of growing older.  Everyone indulges, but for us there are some heartbreaking memories.  I think it would be unhealthy to supress it all.  I am not a negative person by nature and my disease had not changed that basic part of me.  There is still enjoyment and love in my life.  But there is no denying who we are and where we have been.

I do not dwell, but I do remember. It's the 'soup' that makes up my life.  It's that experience that can be our gift to pass on to others just starting on the journey.  

Betty Gordon
3:54 AM on Friday, April 29, 2011

Susan-

What a great topic you ring up- the many of us outhere who were diagnosed in our 50's, 60's and 70's....

I agree with all you said and at our age retrospect is a natural part of life. The " What if???"

It is so difficult to think of the life we might have had with an earlier diagnosis because for all of us it is not just PIDD , but accompanying issues- the stomach, the arthritis, the surgeries, etc. Maybe some of those might have been avoided IF ONLY....

What I think helps me is the realization of all we did do DESPITE the missed diagnosis and the years of illness. I had a career, a child,cared for my parents (not realizing how very sick I was getting)  a  whatever- you fill in the blanks.

I note above traveling worries you- it does me too. I went to a one day conference nearby my state and though exhausted the next day felt some modicum of success -I had finally been to an IDF Conference- if only for a day.

There were children to seniors there that day.

There I met a man who at age 77 had been diagnosed the year before and had driven up from the Cape-to Dedham Mass --- with his cane and his ailments. When he left he said to me "See you next year". What a great thought!!!

"One day at a time" works for us too ...
Thanks for the message
Betty


Florencia
8:20 AM on Friday, December 07, 2012

Great article!!!!! I have CIDP, a different chronic illness. Yet as rarely recognized as PIDD.  I've even been asked by doctors in the hospital "CIDP? What is that"? When I tell them it stands for chronic inflammatory demyelinating polyneuropathy, they joke "Well that's a mouthful isn't it"? And...... Que the chuckles now please:/!  It never fails. I remember once talking to my boss, the HR Director of a major medical facility, she would constantly tell me "You just don't look sick".  I asked her if she would be able to pick out an epileptic out of a crowd. She said "No, not unless they were having a seizure in front of me". Just the conclusion I wanted her to come to. Not all illnesses are visible. Some patients are able to not have to bare the big, capital S for SICK on their clothing. I considered myself lucky in that aspect, until my knees started giving out and I needed my first cane, a DME  piece, that is when people stopped negating if I was sick. More DME (durable medical equipment) would follow.  I (I say I because I don't want to generalize) live in a world where the visual is truth. I'm sure there are many out there who would agree with me. It's a shame, but it is reality. I had to learn to chalk it up to people being naive, maybe even scared that this could happen to anyone, their kids, friends, even themselves. I was 26 when I had my first symptom. I'm 37 now. I am a daughter, a wife, mother, sister and friend. I am not special, I didn't do anything to bring this illness on to myself and I think that is what scares people. I have learned to forgive those who judge. Not because of a religion or anything, but for my own sanity. I realize that they are afraid, rightfully afraid. Some see me as a scary truth lurking around the corner of Life Street,  others see me as a reminder of why life is so fragile and precious. I choose to surround myself with the latter, the few I've found. Be well.

Diane Baker
5:57 PM on Sunday, April 24, 2016

I was diagnosed with Guillain Barre, then diagnosed with an even rarer GB variant, CIDP, which stands for Chronic Inflammatory Demyelinating Polyneuropathy. I was inspired by Florenciawho posted in Dec., 2012 about CIDP, and inspired me to also post some encouragement to others.  The best way I have found to describe this rare disease is to compare it to MS, which most people are familiar at least in passing. CIDP causes the same nerve damage as MS so I feel it is a fair comparison. I just say it is rare and therefore there are fewer treatments available. I have been treated with IVIG and steroids for 9 years. I'm still able to ride bicycle and kayak, and at age 66 I think that is a pretty fair accomplishment.  I say "it is a use it or lose it world" and push myself to do a wide variety of activities. But I too find the world unaware of my daily struggles. I find the "forgotten" disease is easier than the smothering sympathy. Sometimes I do have to admit that I wish a bit of the struggle would be visible so I would have an excuse to turn down invitations. I want to do my thing, not entertain. That's my choice.

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