Saturday, June 30, 2007

Letter to Almu

Long story short: Back when I first "met" Almu through her blog, I was confused about what stage of diagnosis/treatment she was in because she was writing about her acromegaly gradually from the beginning, and when I picked up on the story she had only gotten to the pre-surgery part. I thought she had just been diagnosed and was on medication, waiting to have her first surgery.

There were so many things I wanted her to know, so I worked on a letter to her for a few days. During that time, I realized that she already had her surgery so most of my letter wasn't really that relavant. I ended up abandoning the letter and sending her a shorter email instead.

Now that Alecia has introduced yet another acromegaly blogger to the bunch, I started thinking that maybe there are people who have been recently diagnosed looking around on the internet for support. So I dug up the letter I wrote Almu and I'm posting it here, in hopes someone in need will read it and benefit from it. Here it is:

Dear Almudena,

Hello! My name is Ellen, and Alecia sent me an email with a link to your acromegealy blog. I’m sorry to hear about your recent diagnosis. I’m sure your whole life was suddenly put into a new perspective and you’re overwhelmed with things to think about.

When I read about your diagnosis, I thought about the long road ahead of you. I want to tell you that things may get rough here and there, but overall, you will be OK. It’s great that you have discovered other people on the internet with acromegaly, because we are all here to support each other. Reading everyone else’s blog has been so valuable- I only wish I had found everyone sooner. Even though I have met a few other people with pituitary tumors in person, it was hard to find anyone with acromegaly, except on the internet.

When I found out about my acromegaly, I had the same thing you were having - losing vision in the upper outer corners of the field of vision (bitemporal hemianopias), but I only noticed that my vision seemed blurry. I went to get new glasses and when that didn’t help, I thought it might be allergies making my eyes irritated. I went to an opthamologist to get eyedrops but then she noticed that something else was affecting my vision. She ordered some tests and it turns I had a tumor pressing on my optic nerve, just like you. I had noticed my hands and feet were bigger, as well as my tounge(!), plus I developed acne which I never had as a teen but when I had mentioned these things to doctors before they dismissed them saying they were nothing to worry about. I was very upset that I had gone undiagnosed for so long, and it took a while to get over that. It makes me paranoid now, every time I get a headache or I’m just not feeling “right” I worry that it could be something serious lurking, like the way acromegaly was.

Have you ever had surgery before? You should know that the actual surgery is probably the easiest part of this whole ordeal. There’s nothing for you to do but fast the night before and then put on a hospital gown and take a nap! The doctors do all the work. We are lucky to be living in the present, because 20+ years ago patients didn’t have access to the procedures that we do now, which make the operation much safer and easier. Even the recovery is surprisingly easy- it’s not fun for sure, but it’s amazing how quickly the body can heal. You don’t have to tell your body to heal or make any effort- your body just heals on its own.

For me, the mental and emotional part of dealing with acromegaly has been much more painful than the needle pricks during blood draws and even the surgery. The time between my diagnosis and my surgery were the worst, because of my anticipation and fear of the unknown. I actually stressed myself out so much, I went to the emergency room because I gave myself a headache and the doctors thought it might be the tumor hemorraging or something! Turns out it was just all the tension in my body building up.

I know you have to take your meds for a while before they’re willing to operate, so you’ll have a lot of time to think about things… and there are a lot of things to think about when faced with acromegaly. In preparation for surgery I highly recommend taking time off from any job you don’t really like and don’t bother talking to people that annoy you. Instead, spend time with people who adore you, go to fancy restaurants, go to a spa, eat really good food and spend time outdoors in the sun (or do whatever you enjoy doing). You should really try to have lots of fun and relax as much as possible. Relaxing is good for your mind and your body. I think blogging/keeping a journal helps a lot too. It can help you understand what you are feeling, and it is interesting to be able to look back later on and gauge how far you’ve come.

Also, please don’t feel bad about the doctors saying you have an “obviously acromegalic face.” I think doctors just say that kind of thing just to make themselves sound more confident. But really, if your face was so obviously acromegalic, then wouldn’t you have been diagnosed a long time ago? When I looked at your picture, my first thought was that you look a little bit like one of my friends (who doesn’t even have acromegaly!). I think you look very pretty, actually. But I know how much acromegaly can wreck self-image. Sometimes I stare at my face (and hands and feet) trying to figure out how much of my appearance has changed from the acromegaly and I wonder what I would look like if I were “normal.” Please try not to focus too much on the superficial things… it’s hard in our super-superficial culture, but a lot of things in our culture and messed up and stupid anyway. Part of having this health drama makes me value the things in life that are meaningful and I don’t care so much about the transient things anymore.

Anyway, please feel free to write me whenever, with whatever is on your mind. I hope that I can help you in any way. Take Care! I will check your blog frequently for updates!

Sincerely,

Ellen
(polarchip.blogspot.com)





3 comments:

Princess said...

Hi, Ellen,

Am very happy I've found you, guys. Thanks so much for adding me in.

The blogs here are amazingly informative, inspiring and very cool.

Lucky for you, the dicomfort from post-surgery was not a big deal. It was in my case as I had nasal packings for four long days. Breathing through the mouth was hard and made my tounge and gums really sore. I also had a terrible headache from the nasal congestion and had to be put on tramadol, which was administered through the IV.

I have yet to meet someone from my own country who also has acromegaly. Treatment here is limited to surgery and radiation since medicines, which I gather are very expensive, are not available.

Cheers,
Cess

Ken D. Webber said...

about looking like an acromegalic. I got it BAD! I have big hands, big feet, and osteonecrosis of the jaw that leaves big bone deposits on my face that are obviously abnormal. I look the part of a freak. I don't get laid. I scare people. I keep a low profile because I believe that scaring people or causing them general discomfort is rude and anti-social. But life goes on and I have found that what I loose on the one hand I more than make up for on the other. The friends I do have are of much higher quality than the average joe. They know I'm struggling to live but they give me my room. I had many good years as one of the "beautiful people" and now I feel grateful that I have this opportunity to experience life from another vantage point. Life is good!

polarchip said...

Correction to the part about surgery being the easiest part: preparing for surgery was probably the hardest part, because it meant coming to terms with the possible complications... mentally/emotionally, it was very difficult.