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Posted on 1. December 2011

A Message to My Younger Self

By Tammie Allegro

I was driving home from work recently and the radio station was inviting listeners to call in and leave a message for their younger self. They asked: “What would you tell the young you?” This started my gears turning. I could come up with hundreds of statements I would want to tell the young Tammie. Would I encourage her to enjoy life more and worry less about opinions? Would I tell her to take things more seriously and pursue her education? Or how about telling her to “wait for the important things in life, get married before having children, and then live as happily as she can”?

There are so many things I wish I knew then that I know now. And, I am sure many of you with chronic illness would say the same. Maybe you would have told yourself that your symptoms were not all in your head. Maybe you would have requested testing for diseases whose names you’d never heard of when you first got sick. Perhaps you would have asked for help sooner and listened less to bad advice.

At my age, I think I am halfway between being old enough to know better and still young enough to enjoy it. I have lived such an eclectic and dramatic life filled with so many lessons that have shaped me into the “grown up” I am. However, I feel like I still have a lot of growing up to do.  What I know for sure is that young Tammie would think I am a dinosaur, way past my prime. Little did she know that life just starts getting good at this age. I love better, I live better. I appreciate things I never noticed before. I am far more patient than I was even 10 years ago. I am a better judge of character, too. My friendships are more genuine, and my gestures of kindness are more sincere.

As the mother of a teen daughter who just graduated high school (you know the age where they have officially figured out the universe), it isn’t always easy to impart wisdom that will be heeded. My daughter doesn’t “need” me or really care for my opinion because she has life in the palm of her hand.  However, I use these moments in parenting to make up for the things I did and didn’t do as a teen. I share things with her to teach her not to follow my path, but to create a path of her own. And as she makes good decisions about boys and school, she is already profoundly ahead of my curve.

Whether you are a patient with a chronic illness or the parent of a sick child, you are now educated in a specialty you didn’t sign up for. You never intended to know the immune system inside and out or to know every brand of immune globulin. The challenge now is what you will do with the information you have been given through trial and error. Do you educate those around you? Have you taught your children to look for the signs of illness? Have you written down in a journal about your journey to ensure that no one else in your family will go years undiagnosed? I’ve found that however you go about it, sharing what you have learned is empowering. Maybe we can’t share life lessons with our younger selves, but we can mentor the younger people around us so that we create a wiser and more informed generation.

As I listened to people calling in to the radio program that day, I was struck by a common thread they all shared. Essentially they were all saying: “Slow down and enjoy the journey.” I think that’s the best advice of all.

What would your message be? What is your message now?

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Comments (1) -

Maggie Bernet
8:00 AM on Friday, December 02, 2011

I agree with Tammie in many ways.

by the time I got diagnosed I was 47, but during my life I was sick so many times with different infections and healthy issues.

I actually remember saying to my family and my doctors in my early twenties, I don't have a good immune system, it just seems very dis-functional, they all just looked at me and said "oh no, you don't look sick, just go home and take it easy"...... Well, I didn't take it easy as I was a work-a-holic just like my father was.. and I was told I looked fine....little did I know then.

and here comes my younger me, I saw my father sick all the time, but still working our farm day and night, now I know he had a compromised immune system, now I know where I got it from, now I know why I felt I had a week Immune system....

I was always interested in medicine and the medical profession, so I became a nurse, or what we call in Switzerland a "Artzgehilfin" (medical assistant/office nurse/lab technician) a complex profession that does not really exist here in Canada.

It is due to my medical background and from growing up with a father that was constantly ill, I knew there was something wrong with my Immune system, except no doctor would ever listen let alone test me for all the Ig levels and subclasses...

My strong will power and zest for life, plus my profession I absolutely loved every day, kept me going despite some set backs with frequent infections.

It took my ENT (ear nose throat) that finally realized there is more to it than just the ongoing sinus infections and AFS (allergic fungal sinus disease) than met the eye. He said I think I know whats wrong with you, your immune system is not working. Those words I will never forget, as I felt for the first time in my life, I was understood by a doctor and I wouldn't be alone anymore with my "feelings".

He sent me to an immunologist and all the necessary tests were done and lord and behold, I was dx with PID (CVID).

I remember saying to him, I started to think it was all in my head, and he laughed and said, you are right Maggie, it is all in your head, it is in your sinuses. Almost every week I get my sinuses flushed and drained of the fungus for years already.  

Once diagnosed by the Immunologist and my ENT got his suspicion confirmed, my GP was to organize my IVIG at the hospital closest to me, but he didn't and ignored the conversation with the Immunologist and plea from me to get me started.... this is how frustrated I started out......

If I knew then what I know now, I would insist to be sent to an immunologist and have the tests done asap....  My worst enemy was/is that I don't look sick, I still don't look that sick when I go out..
people have absolutely no clue..

and yes, I try to educate family and people and even my other doctors, you can imagine who is the most difficult to educate... it is the doctors, their ego gets in the way, and so we keep having a big problem with getting Immune Deficient patients diagnosed.

the same goes for AFS, most ENT don't even know what that is, and they don't want to know, if I wouldn't have my ENT doctor I would not be here anymore, that is a fact, he is my life line and my HERO.

My advice to people that keep getting sick with infections of any sort, and don't really know why and are just given more antibiotics every time, please listen to your body and insist to see an immunologist that knows about PID, be your own advocate, it is your body it is your life, you are in charge of it..

Every day is gift, and my husband and I are enjoying every day as it was our last.
Tomorrow is not guaranteed to anybody, so yes, like Tammie says, slow down and enjoy what the ride, let non-important things slide, don't sweat the small stuff, your body and mind needs the gentle touch and make it "priority" all day every day.

Living with chronic diseases/illness and chronic pain is bad enough, so lets treat that body and mind of ours with the utmost respect and love.

The first wealth is health.

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