Showing posts with label pituitary tumor. Show all posts
Showing posts with label pituitary tumor. Show all posts

Tuesday, September 30, 2014

"I had a bubble on my brain"

I was walking around yesterday and saw an ad in a bus stop that said, "I had a bubble on my brain and they took it out through my nose. Now I can go back to school."

I've been there! (Taking out "the bubble" through my nose part, at least. I was out of school by then.) So it turns out little Nile's tumor was not quite a pituitary tumor, but the surgery was the same. Can you imagine how tiny and delicate the passageway for the operation must have been.

I sent a photo of the bus stop ad to someone I had met just the day before- I was at my friend's niece's birthday party, and my friend's sister was like, "Hey you and this guy should talk, I think you had the same thing, your pituitary operation?" Turns out he had a pituitary tumor removed just three weeks ago, and wanted to know what the rest of his recovery would be like.  The doctors don't think his tumor was actively secreting any hormones (more test results pending), so he doesn't have acromegaly but we still had that kindred experience of getting diagnosed, facing surgery, surgery, and recovery.  It was strange to recall a time that was almost a whole decade ago! I was such a different person, so much has happened since then, and I hadn't even talked about my experience in detail in a while.  It was great to hear the similarities in our stories (for example we were both diagnosed because of vision symptoms, peripheral vision loss) and it also felt good to represent long-term recovery to him - like, "Yes, you will have a (semi) normal life again! I am proof!" He's my new "Brain Bubble Buddy!"


Thursday, July 30, 2009

Clear the Path, Life is Waiting...

I had a very interesting weekend dealing with friends and their psychological limitations. Now I am in no way a psychologist, or even a social worker. But as a fellow acromegalic and high school teacher, I feel I am somewhat of an expert in how people can be cruel to those who look “different.”

One friend was acromegalic, and one was completely healthy. My friend who was acromegalic was invited to a party where they had not seen people since before their diagnosis. My friend who is in perfect health was afraid to attend a gym because they may not be as strong as their contemporaries. While these people are on different life paths, the similarities in their reasoning were striking to me. Both friends were primarily worried about what other people would say if they chose to participate in their individual social activities. While I am sympathetic to their fears, my own experiences made me feel badly that they were voluntarily standing in their own way.

Before I was diagnosed with acromegaly, I was tremendously obese, I was 6’3” and weighing in at just under 350 pounds. My shoes were size 16, and my hands BARELY fit into XXXXXL gloves! As to the gym, when I did try to go to the gym, I was barely able to do anything without my chest hurting. In hindsight, it was probably the tumor, but at the time I heard the whispers when I couldn’t hack it at the gym(which may or may not have been limited to my own brain): how do I expect to get my heart healthy if I don’t exercise because its too tiring. What a loop! If I go to the gym, I feel lousy and fear people are ridiculing my workout ability. If I don’t go to the gym, I feel lousy and fear that people are ridiculing my weight.

After diagnosis and treatment, I lost a good deal of weight for about six months before it started creeping back up. I was at a crossroads. I didn’t want to gain the weight back, but how I feared what others were saying. So I started to just watch my diet. Eventually that weight loss plateaued and I needed to either accept where I was stuck, or risk ridicule. I finally decided to take the plunge, laughing be damned. While I felt like everybody was looking and laughing at me, eventually I noticed that most people were busy working out, with no regard to anyone else in the gym. Most people there were either they were in love with their own look, or were worried about the same thing I was: ridicule from fellow members. After that epiphany, I was able to go work out at my own pace without fear of ridicule. And yes, I did see people laughing at me from time to time, but by then I was far enough into my routine that I just didn’t care. Parenthetically, this morning I was at the gym and noticed a guy doing cardio who was tremendously overweight. My first thought was, good for him! He took the first step!

So what does all this have to do with Acromegaly? Acro’s are typically very self-conscious of how we look. “Chris” chose not to go to the party because of a fear of ridicule. This is a shame because Chris is a very kind and generous person and I am sure that the party was poorer for Chris’ absence. Moreover, I am confident everyone else going to the party was afraid of something embarrassing including (choose any or all): weight loss/gain, job/career status, clothing label, paycheck, kids, house, life goal, addictions, fears, etc. We don’t need to apologize for our own inadequacies because most people are too busy focusing on their own shortcomings to notice what we fear most about ourselves.

My friends, I am both happy and sad to announce that no one ever really leaves behind the pettiness of high school. It is sadly unavoidable that people will always judge other people; and I am sure that at one time or another we are all guilty of it. The trick is to not let other people’s value of you paralyze your life. When we choose to not be social because of fears over that which we cannot control, we stay home and trap ourselves inside our own brains with our own endless chants of inadequacy, ensuring those negatively skewed self-evaluations will set in mental concrete. We have an obligation to those we love, and those who love us, to battle those insecurities and live every moment to the best of our abilities.

I admit that some days are better than others and when the acro is running your body, it can be tough to face the world. On sick days you may need to take it easy, and that is fine. But on those other days when we are healthy but may be feeling a little crummy about ourselves, I feel that those are the days we need to work extra hard to face the world. Worst-case scenario, we go out and have just as bad a time as we feared we would. But in all likelihood, if you are social, something good will happen while you are out. Even just faking it can change your mood for the better… you will have far more fun than locking yourself in the house. Who knows, maybe you go out and have a wonderful time and make new wonderful memories.

We only have one shot at this life. We need to make sure that we do waste a single day because of a fear that someone you don’t know may disapprove of you. Go have a great life, and if someone tries to stand in your way, walk around them and keep going!

Monday, July 6, 2009

Who the heck is MsMoge?????

Ms Moge is owned by Shadow cat pictured in my icon. He bites the tops of my feet when he wants something. A feral cat when he first came to be with us and now rules the house (well he thinks he does)

I unwillingly landed in the position of researcher and supporter for acromegaly patients when my son was diagnosed with a macroadenoma in 1993. Phew seems like yesterday and a lifetime ago all at the same time.

My son went through the traditional treatment options, 2 transsphenodial surgeries, gamma knife and then all the hormone replacements. egads.......... this is a frickin nightmare at times.

My son is a giant now 7', we are preparing to make a video of his life and diagnosis. Absolutely we will share this with Acromegaly Bloggers once we get it done.

To some degree I have evolved my research into giantism born from pituitary tumors.

When he was first diagnosed I remember contacting NORD (National Organization for Rare Diseases) In a week or so I got some literature in the mail. Acromegaly was briefly defined and at that time giantism was not even listed. Leave it to my son to get a disease so rare even NORD didn't have it listed. Looking back the thinking from the medical community was giantism was a disease of the past. Not something you would encounter in modern medicine. A child or teen diagnosed with a p. tumor would be treated thus preventing giantism. Good Plan if it worked. We now know a few stubborn tumors refuse to be treated absolutely.

If I had a nickel for every minute spent waiting in a waiting room I'd be filthy rich.

My son is now 34 and fully supports my going public about his disease and his life. It's time we share what we have learned and also learn from others.

As for me I call myself a giantologist. I have to be a trivia master on the acrogiants throughout the world. The needs of this group of individuals is extreme. I'm working on finding ways to reach out to them and share resources and research. Everything from socks to tops is extreme and hard to find. In some areas of the world, I honestly don't know how they even live. Extraordinary lives led by extraordinary people. I will be blogging on some of these people from time to time.

Well I gotta stop somewhere, I have a problem with blabbing on and on....... I hope my contributions to acromegaly bloggers from time to time helps the acromegaly community in some small way.

Best Regards,
Ms Moge

Wednesday, January 10, 2007

Acromegaly Support

Hey Guys,

I was thinking that we could start a new blog that would be like a faux RSS feed/meta blog of all our individual ones. Like we would write and post to our individual blogs as before, but when we write something about acromegaly, we also post it here. Or maybe you want to post something here about acromegaly that you don't want to post on your personal blog.

That way people with Acromegaly looking for support could find one centralized place to find all of us... We can all be team members on this blog! And of course there would be links to our individual blogs.