Knowing that I need another ear surgery brings all sorts of emotions. All of which I tried my best to suppress. It only works for so long.
The Legacy
I was about 8 years old and I can recall turning up the volume of the family television. It must have gotten
I'm talking about middle ear infections. My diagnosis was chronic otitis media.
especially loud because my mother told me to stop changing the volume and to stop “faking” like I couldn’t hear. At some point after this, green goop and blood started coming out of my ears. My ear drums had ruptured. At some point after that, I had a surgery.
But that’s not the whole story. I had ear infections from the time I was a baby. My parents’ treatment was to have me lie down on a heating pad. I would be wet with sweat and in incredible pain. I still shiver when I smell a heating pad warming up. At some point, there may or may not be another rupture and I would go to an ENT and take oral antibiotics. I would make medication charts to make sure I took every antibiotic dose as prescribed. At some point after that, I would still have the infection and I would get a myringotomy with tubes.
I was about 12 years old when an Allergist told my mother that in order to keep me healthy, she and my father would need to stop smoking inside their home. He talked about how easy it would be to set up an outside smoking station. The Allergist took lots of blood from me and poked me with lots of needles. At some point after that, my parents never tried smoking outside and my mother reported that the Allergist said I needed some sort of globulin. It would require us to travel far away on a regular basis. The only other comments my mother made about this was when talking to other people about the “goblins” I needed. I never received the globulin treatment(s).
When I was around 13 years old, my ENT talked about holes in my eardrum. He would say, “If the holes don’t close up by the next time I see you, we’ll have to do something about it.” I saw ENT doc at least two more times before I spoke up and said,
“You said the same things about the holes the last two times I’ve seen you. What are we going to do about it?” After leaving the appointment, I was punished by my mother for being a smartass to the doctor.
Very similar to my aids circa 1987
It took a couple more visits to the ENT doc before he decided I needed a tympanoplasty in each ear. This surgery closed the holes in my ear drums. On the right, with a piece of muscle from behind my right ear. On the left with a piece of skin from my left ear lobe. It was a pretty involved surgery and I was hospitalized for several days.
After the surgery, I developed infection behind my ear drums again. Rather than do a myringotomy with tubes, ENT doc prescribed me hearing aids with the explanation that I was going to have ear infections forever and the hearing aids were a permanent solution.
When I was around 16 years old, I had become pretty depressed about living with a profound hearing loss. I recall my father expressing frustration and he took me, by himself, to a specialist at the nearest children’s hospital. The Children’s Hospital ENT said I needed my tonsils and adenoids removed. I had the tonsillectomy and adenoidectomy and did not have an ear infection again until I was pregnant at age 30.
From 16 to 30, I had a mild to moderate hearing loss, too mild by most standards to wear hearing aids. I struggled with my hearing a ton but managed to make it through.
When I developed my ear infection during pregnancy, I had no real hope for treating it until after delivery. After my ability to breastfeed suddenly stopped, I began taking antibiotics. After a few days, I woke to a familiar feeling, my ear drums ruptured. They ruptured two more times in the next year.
To be continued…
Why yes, of course, comment all you’d like.
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Grrrrrr.
There’s a lot I’d like to say, but I don’t know how much is reacting to what you wrote and how much is projecting my own anger at my parents on your situation.
Have you ever (like me) wondered how much of your current chronic health problems may stem from growing up in a home with smoking parents? And probably with a mom who smoked while pregnant (mine did)?
So sorry this upcoming procedure is bringing up horrible memories for you. (And thank goodness for your dad taking you to that children’s hospital on his own!)
*hughughug*
Hi Aviva,
Wow! We have yet something else in common! I am the youngest child and my mother only smoked while pregnant with me. I often wonder her prenatal smoking has anything to do with how short I am compared with my 3 sisters and how sick with colds, allergies, etc. I always was compared to anyone else in the family.
I had mixed feelings about even posting this. With you having some similarities, I’m sure you know what I mean. I don’t want anyone to view the post as me having unresolved psychological issues with my parents. Of course, it has a lasting emotional impact but I really am over it. I’ve grown into a responsible, successful adult without their help. For me, I feel as though my childhood medical treatment (or lack thereof) is the legacy I am left with. I can use that legacy for possible clues on how to get better now. That will come in the second part of this post…. as I develop the courage to fully face my ear/hearing problems and put into words what I often gloss over.
Thanks for the hugs!! Many higs right back to you!!!!
I would love to hear more about your thoughts and connections to your possible health conditions!
Hi,
So sorry about all the ear problems. I don’t get many ear infections, but I’ve had very frequent sinus infections & bronchitis for many years. As it turned out, I have a primary immune deficiency, CVID, which was dxed in 2006 . I also had Lupus for many years and that too was dxed in 2006.
The immune deficiency is treated with infused immunoglobulins, as my body does not make enough to create the antibodies needed to fight infections. This is probably the globulin the doctor you saw as a child was referring too. This is very long winded I know. But I was wondering if you’ve had your IG levels tested? If you get other frequent infections like sinus infections or respiratory infections, it might be worth checking out. Your PCP could probably do the preliminary tests – IGA, IGM, IGG & IGG subclasses.
I’m not trying to give medical advice, or play doctor – it’s just that I know what it’s like to be sick & not properly dx’d. And primary immune deficiencies are often overlooked as most doctors don’t know much about them.
Sharon
Wow, Sharon. Thanks for the info. My PCP is always interested in possible things to check for to get to the bottom of the mystery. I will have to look up more info about CVID and would love to learn more aboout your lupus dx. I have a positive ana with a speckled pattern so that’s largely been ruled out. But I always wonder..
Continued? Argh! Soon, I hope!
The range of emotions as I read this…
astonishment/disbelief – why would parents persist in doing something that they know makes their kids sick? Your mom blamed you because you couldn’t hear?
amazement – a doctor would give up and recommend hearing aids instead of consulting with others to figure out what would work
cheers – good for your dad! Something about having the dad instead of the mom go to a child’s appointment makes doctors listen differently.
Good for you for speaking up and asking questions about your treatment. So sad that your mom saw it differently.
I hope that your upcoming surgery goes well and is effective for you. ((hugs))
Warmsocks,
Thanks for giving me that warm socks feeling. It’s comforting to know that I am not alone in looking back at this situation with a range of emotions that were too complex for my younger self. I appreciate all of your support. It means so much. Hugs to you, too!
Wow Queen. I never cease to be amazed at how much you have been through the ringer! Sounds like you had more doctors than teachers when you were little.
Hopefully your anecdote of second-hand childhood smoke will influence parents who smoke. You wouldn’t be able to prove directly your problems were related to parental smoking, but at least the ear problems are strongly related to second-hand smoke in the home.
Thanks, Doc. The optimist and wishful thinker in me hopes that all my time through the ringer will somehow even out to less challenging times for me in the days ahead.
I wish I could talk with every smoking parent!
I just wanted to add that both my parents smoked. Even when my youngest sister was dxed with asthma & was quite ill. People back then were less aware of the dangers of 2nd hand smoke, but it must have been obvious that it wasn’t good for a child with asthma.
Sharon