I pride myself on being real - true to myself, open and honest - with everyone - family, friends, clients - so prepare yourself - I’m about to get very real. I’m going to go out on a limb here and share something quite personal. Many of you know that I’ve been going through a rough time lately… many know I just had surgery (well, while I’m being so open, I just had 2 surgeries in a span of just over a month). The reason for all of this? It’s called Intracranial Hypertension and it’s quite rare. There are two classes of this condition - one is where they have a pinpointed cause (other conditions such as obesity, chiari malformation, etc., long term use of certain medications) and the other class is of unknown cause. I fall into the latter group. For most, there is no cure, only treatment. Treatments can include repeated lumbar punctures (aka spinal taps), medications, shunting and optic nerve surgery if vision is at stake. I exhausted the first two options as repeated lumbar punctures can cause many problems and I’d need them too often. The side effects of the medications were terrible and they didn’t give me the relief I needed anyhow. So, I had a shunt placed and though I’m still recovering from the second surgery (which was only a week ago), I’m feeling pretty good. My head and my eyes are improving more and more every day and for that I am SO thankful. So why am I telling you all this? Because I desperately want to spread awareness of this condition, because I believe most people fear the unknown (some know bits of what’s going on and I can imagine how your minds could wander!) and because I am angry at some very public misinformation about this condition that aired on national television Monday and I want to try to help clear some of it up.
I was watching Oprah’s show on gastric bypass surgeries Monday and there was a girl on named Kylie… here is an excerpt from the show:
“When she was just 17 years old, Kylie began losing her eyesight as a result of her weight. This complication of obesity—known as pseudotumor cerebri—is usually only found in adult women.
At the time, Kylie weighed more than 250 pounds. She says her obesity caused spinal fluid to build up between her optic nerves and brain, causing severe migraines and eyesight loss. To avoid permanent damage, she took drastic measures.”
This is the same condition that I have and this misinformation about the condition just irritates me!! The way this story reads is that this condition is a complication of obesity. First, if that were true, why doesn’t every obese person (or obese adult woman as the show put it) have it? Why do very thin people like myself get it? I have never been overweight a day in my life… in fact, I’ve typically been underweight. My second issue with this is that it says it caused severe migraines… these are NOT migraines, but are very often, as in my case, misdiagnosed as migraines because the symptoms are quite similar. Third… it’s called Intracranial Hypertension, people… pseudotumor cerebri is no longer the “PC” term. It is thinking like this that I believe caused my diagnosis to be missed for so many years - so many doctors believe and openly admit that this does not affect “skinny people”. Since getting my diagnosis I have frequented many chat boards and I have found men, women and children have this - sure, the majority are overweight women (I wouldn’t say obese though), but many are not. I don’t know many people with this condition who have gone with gastric bypass surgery - most (even those who are obese) manage on medications and/or shunting (I have a shunt) and of course, those who are overweight are encouraged to lose weight. Many who do lose the weight DO NOT go into remission however, so even for them, weight isn’t the only issue.
I totally “get” that this show was focused on the gastric bypass surgeries, but if you’re going to give information on any condition, get your facts straight first. I am just dumbfounded that of all shows, Oprah’s would be the one to misconstrue this condition. I expect more from you, Oprah. You, your producers and “Dr. Oz” need to do more research before airing things like this. I, along with MANY others, have already written a long e-mail to the Oprah show hoping to clear up these misconceptions and hopefully get a show dedicated to this condition to spread awareness of it.
There is a link to the right, here on my blog, for the IH Research Foundation if anyone is interested in reading more about this condition.
As far as this affecting my job, please, don’t think for a minute that I would let this get in the way of my dreams (or yours!). When I was feeling at my very worst this condition still could not keep me down. I have never missed a wedding. I am way too driven and passionate for that… not to mention I could not even imagine having someone fill in for me at a wedding - that would be like tearing my heart out and stomping on it - it would take a lot more than this to keep me from capturing the wedding of two people who are depending on me to preserve those moments. Clients that, 9 times out of 10, I end up truly considering friends of mine… some are even more like family. This is also why I am limiting myself to only 2 more weddings for the year… I want to be absolutely sure that I can handle each and every one with the attention they deserve. I went through these surgeries so that I could have a better quality of life (and be better at my job)… it’s amazing how much clearer you think when it doesn’t feel like you have thousands of icepicks stabbing your brain and your eyeballs don’t feel like they’re going to pop out of your head! Very soon I will be fully recovered and feeling better than I have since I was a child… I already feel better than I have in close to a decade!
