Archive for the My Body and Me Category

From Wikipedia:

“Stargardt disease, or fundus flavimaculatus, is an inherited form of juvenile macular degeneration that causes progressive vision loss usually to the point of legal blindness. The onset of symptoms usually appears between the ages of six and thirty years old (average of about 16–18 years). Several genes are associated with the disorder. Symptoms typically develop by twenty years of age, and include wavy vision, blind spots, blurriness, impaired color vision, and difficulty adapting to dim lighting.

The long-term prognosis for patients with Stargardt disease is widely variable although the majority of people will progress to legal blindness. Stargardt disease has no impact on general health and life expectancy is normal. Some patients are able to drive.”

From my Retina Specialist:

“If you enjoy reading books or driving, you should probably do a lot of it before you turn 50.”

Random takeaways from yesterday’s appointment:

– Stargardt disease requires inheriting one specific gene from each parent. Because of this it often/usually skips generations.

– The Dean McGee Eye Institute sees approximately 4 cases of Stargardt’s disease each year.

– Typically, Stargardt disease affects both eyes at the same rate. In my case, it hasn’t. The doctor called my case unique and referred to it as a rare form of a rare disease.

– Dean McGee has asked me to come back for more research so they can gather more information about this rare form of Stargardt’s.

– Stargardt disease is unrelated to Horner’s Syndrome (the reason I have different colored eyes). The fact that I have both is a coincidence, although it may explain why the Stargardt has affected my eyes at different rates.

– Stargardt only affects your central/focused vision, not your peripheral vision. That’s why it affects your ability to read or recognize people’s faces, but not your ability to maneuver a room, for example.

– The previous diagnosis of macular degeneration/atrophy is really just a product of Stargardt disease. None of the treatments (vitamins, shots, etc) will have any affect on my vision.

– While some research with stem cells is being done, there is no current treatment, prevention, or slowing down the progression of the disease.

– Legal blindness is defined as 20/200. The vision in my left eye is 20/1500. My right eye is currently 20/25.

– The doctor expects me to be legally blind within the next 10 years, give or take.

“You are definitely the most interesting person I’ve seen all day.”

A fun phrase to hear in some situations, an eye exam at the Dean McGee Eye Institute not being one of them. After three hours of tests, scans, and evaluations, the optometrist weakly smiled at me and said, “I wish I had better news for you.”

I wish he did, too.

First, he told me I had Horner’s Syndrome. I already knew that, and it’s not a big deal. Horner’s Syndrome is caused by damage to a group of nerves and has a few major symptoms. The dead giveaway is two different colored eyes, followed by (and I’m quoting Wikipedia here) “miosis (a constricted pupil), ptosis (a weak, droopy eyelid), apparent enophthalmus (inset eyeball), plus/minus anhidrosis (decreased sweating).” I don’t think my eyeball is inset, but I do have all the other symptoms: in regards to my green eye, the pupil is constricted and slow reacting, the eyelid slightly droops, and I do not sweat on that side of my head. While some people develop Horner’s Syndrome over time, most people (like me) were simply born with it.

The bigger concern was the results of my eye exam.

Let’s start off with my vision test. In my green eye (the “bad” one), the results of my eye exam were 20/1500. That means that, at least in that eye, objects that are 20 feet away look like they are 1,500 feet away for me. This became pretty clear when, with my good eye covered, I could not read a single letter on an electronic eye chart 8′ away. The eye charts they use are presented on a 24″ monitor, and they will continue to enlarge the letters until one single letter fills the entire 24″ monitor. With my left eye, I can’t read a letter that fills a 24″ monitor from 8′ away.

I had heard of macular degeneration before. Just two weeks ago, Roseanne Barr announced she was going blind from macular degeneration. In my green eye — again, the bad one — I have what’s called macular atrophy.

Here’s a quick eyeball lesson. I didn’t know any of this before yesterday so my apologies if I get any terminology wrong. In the back of your eyeball there’s an area called the macula. Across the macula are tiny bands that allow your retina to focus on things. This is all about your “straight ahead” vision, not peripheral vision. The most common type of Macular Degeneration (dry) is the wearing down of those bands over time. Vision loss is gradual with dry macular degeneration. 90% of the people who have macular degeneration have this type.

Atrophy, unfortunately, is worse. If “degeneration” is the journey, “atrophy” is the final destination. My bands done degenerated. There is no fixing this eye. Even what we call an eye transplant (which is really just a cornea transplant) would not fix this. The good news is, it can’t get any worse in that eye — which is akin to saying, “at least that dog turd can’t get any stinkier.”

Now let’s talk about what I used to call “my good eye,” which I must now call “the better eye.”

In my better eye I am showing signs of Macular Degeneration, which apparently runs in my dad’s side of the family. The doctor said the macula bands in my good eye have already started to degenerate. Usually he only sees this amount of degeneration in his older patients, but… lucky me. There’s no way to repair those degenerated bands. The only “treatment” is to slow down the degeneration.

My doctor referred me to a list of things one can do to slow down macular degeneration. I have personally grouped them into three logical categories.

– Don’t smoke, lose weight, lower your blood pressure: eyeballs require large amounts of oxygen and blood to function. Anything that restricts the flow of oxygen or blood to the eye contributes to macular degeneration.

– Exercise regularly: Again, increasing the flow of oxygen in the bloodstream helps.

– Diet and supplements: Eat a nutritious diet that includes green leafy vegetables, yellow and orange fruit, fish, and whole grains. Take supplements. Wear sunglasses and hats outdoors.

Based on that:

– I don’t smoke, but I do need to lose weight and lower my blood pressure. That just turned into a priority. Exercising regularly is a part of that.

– I see diet changes in my future. And just in case you don’t think this is serious, Susan brought home my new breakfast regimen last night:

Short of stem cell therapy, exercise, vitamins, and wearing sunglasses are about all I can currently do. (Smoking pot with Roseanne Barr is not an option.) While vitamins and all those other things won’t restore any vision I’ve already lost, it will (can) help me retain what I currently have — which, again, has suddenly become a pretty big priority.

I am sharing all of this not because I am looking for sympathy or prayers or well wishes from anyone but because I am a journalist at heart and have a need to document things around me, good and bad. While my macular degeneration should hopefully be gradual enough that I’m not continually documenting any increases in vision loss, if there’s a major change I’ll definitely provide an update. Other than my own new personal health goals, it’s back to business as usual.

Next month, I will be turning 39-years-old. I was hoping that my body wouldn’t fall apart until the age of 40, but it doesn’t look like that will be the case.

It all started with some weird “finger tremors”. Occasionally, one of my fingers will just start twitching. Whenever they do this, they hurt like I’ve popped my knuckles too hard. After searching Google I was pretty sure I had Parkinson’s or something. The last time I saw a doctor, I mentioned it to him and he said, “sounds like carpel tunnel to me.” Then I told him it couldn’t be that and he asked me if I spend more than an hour a day typing on a computer and I said yeah, closer to 12-16 hours. Then he looked at me and said, “Hm, sounds like carpel tunnel.”

Then, a couple of weeks ago, my vision started going. Again I searched Google and, this time, I determined I had diabetes. (Perhaps the point of this post is, I should stop searching Google to diagnose my ailments.) A few years ago I went to an eye doctor who prescribed me some glasses. I wrote them twice before putting them away. Last week I dug them out, but they only seem to make things worse. I mentioned it to a co-worker, who suggested I pick up some reading glasses. I did, and it makes things so much better. I bought two pair from Dollar General and they’re both fairly awful, but I hear Sam’s and Walmart have better quality ones, so I may pick up some better ones this weekend.

I have been struggling all week coming up with something to write about. The best I could do was, “my fingers hurt and I need glasses.” I’ll try harder.

I’d like to introduce you to a friend of mine. His name is beardie.

A bit scraggly in this photo, I have been growing beardie for essentially this entire NBA season, from around Christmas time until, well, today. Here are some of the nice things my wife has said about beardie:

“It’s itchy.”

“You look like you’re homeless.”

“You make too much money to look like that.”

“There’s milk in your beard and it smells funny.”

(That last one was from this morning.)

With the NBA season now over I had run out of excuses, and this morning I did the inevitable.

Over the past week I’ve had two different friends ask me details about my Lapband surgery – how the surgery went, how things are going, and would I recommend it. When I mentioned this coincidence to Susan, she pointed out that I haven’t blogged much about my surgery at all (which is unlike me). So, for my friends, and for you, here is my “three-month Lapband update.”

I had Lapband surgery on December 3rd, 2007. It’s an easy date to remember; it was nine years (to the day) that I got hit by a truck. December 3rd has become my second birthday – twice now. Prior to having Lapband surgery there are a series of hoops everyone must jump through. Every single place that performs this procedure has different rules and requirements, so I would be surprised if anyone else’s experience was identical to mine. Here are the eight things I had to complete before having surgery:

– Attend the initial seminar: This was more or less a two-hour sales pitch. During the event they explained and compared the two most common surgeries (Gastric Bypass and Lapband). At the end of this seminar, attendees submitted their insurance information and were later notified if they qualified for either of the surgeries.

– Attend the introduction: After being accepted, I had to attend this introductory meeting. During this meeting they explained the general process, allowed us to sample different types of food, and gave us notebooks full of information. They also scheduled my surgery date during this meeting, approximately six weeks out.

– Make a food order: For ten days prior to surgery and a week afterwards, I was on a liquid diet. The place I had surgery sells protein-rich drinks intended for this period. Purchasing my food elsewhere was not an option; their food is part of the program. Protein shakes and packets average $3 per meal, and I had to buy 3 weeks worth. (If you want to buy protein mix in bulk, it is cheaper.)

– Meet with a shrink: During this 1 hour session, a shrink tries to determine whether or not you are crazy. I suspect the purpose for this is to determine why you are overweight; I think they are looking for eating disorders here.

– Meet with a dietary consultant: During this session I met with a dietary counselor who explained to me the changes in food intake that were about to occur. We talked a lot about measuring food and monitoring daily protein levels. I actually thought this was one of the more interesting and productive hoops.

– Meet with a physical therapist: During this session the physical therapist explains to you why you are fat and helps you develop a workout schedule.

– Attend a support group meeting: Personally for me this was the least helpful and most annoying hoop, but others may find it more helpful or interesting. The group meeting I attended consisted of three groups of people: people who were there to whine, people who were there to help the whiners, and people like myself who were forced to be there and didn’t say a word. The whiners whined (“I just can’t do it! I love ice cream too much!”), the helpers helped (“You can do it! I did it! If I can do it, you can do it!”), and the rest of us sat around looking at the clock. If I need support, there’s this thing called the Internet and there are several large websites and forums designed for people to ask and answer questions. Hanging out in a room full of strangers talking about my addiction to Peeps ain’t my thing.

– 10-day pre-diet: Both Lapband and Gastric Bypass surgery are stomach-related surgeries, so it makes sense that your stomach should be as empty as possible beforehand. Lapband surgery is laparoscopic, which means it is performed through a series of tiny cuts instead of one big incision. To get to the stomach easily, the liver must shrink, which is another reason for the diet. Some people suffer terribly through the diet but I personally found it not too bad. One of the meal replacements I purchased was a big bag of Cookies and Cream mixed, which is prepared by mixing a big cup of mix with 8oz of water or milk. I added ice and threw it in the blender, making a giant shake. Who doesn’t like Cookies and Cream shakes for lunch?

All of this was not as bad as it sounds. I know at least four of them all took place on the same day, so it wasn’t as time consuming as it may seem.

On the day of my surgery, I checked in to the hospital at 6am, with a scheduled surgery time of 9am. My surgery actually took place sometime around 1pm (routine hospital delays). Before the surgery, I laid in a waiting bay with my parents and my wife at my side. Once I finally went back, the surgery went quick and within an hour I had woken up in recovery. I moved back to my room shortly after that. Some insurance companies will not pay for an overnight stay; mine did, and I had a stack of electronic things around me to keep me entertained.

Around 6pm that night (approximately three hours after returning to my room) I was served my first meal, in paper cups the size of shot glasses. I think I had broth, pudding, and Jell-O. Surprisingly, it filled me up. Another two hours later at 8pm I got up and walked around a bit. My stomach was sore but not unbearable. I spent the last couple of hours of the night watching Funniest Home Videos (which seems to always be on in the hospital) and a football game. The next morning I took a shower on my own, got dressed in loose clothing, and went home around 9am.

The worst pain I experienced throughout the entire ordeal was something called “phantom pain” in my shoulder. A day or two after my surgery I began feeling intense pain in my shoulder. During laparoscopic surgery, the stomach cavity is pumped full of air. Some people will tell you that the pain comes from those bubbles rising up to your shoulder, but the real cause of the pain is bubbles pressing up against nerves which lead up to your shoulders – that’s why you feel it there. Google for laparascopic shoulder pain and you’ll find a million cures. Believe me, I tried them all. Heating pads didn’t work. Drinking Peppermint Tea didn’t work. Laxatives didn’t work. Walking around didn’t work. The only thing that worked was pain pills, so stock up! The pain I felt in my shoulder was 100x worse than anything related to the surgery.

I had my surgery on a Monday. I was home Tuesday morning; Wednesday, Dad and I went out and did some minor shopping. Even though I scheduled a week off of work for the surgery, I could have gone back to work by Thursday for sure. One of the limitations after the surgery is not lifting 20 pounds, but that was not a major factor for me at work.

For those who aren’t sure how Lapband works, here’s a cute little image. As you can see, the band goes around the top of the stomach, creating a small 4oz (half a cup) pouch above it. If you think of it like a car’s gas tank, essentially you’ve moved the bottom of the tank all the way close to the “full meter,” so even after eating a small amount of food you feel very full. Another analogy – think about a plastic funnel. Even if you fill a funnel quickly with water, it takes a long time for it to flow through. The idea with Lapband is that your new pouch will fill quickly with food, but it will take a long time for that food to drain through to your real stomach. That rate of drain is controlled by how much saline is in your band. If you’ll notice in the diagram, there is a port hanging off of the band. That port sits underneath your skin, and the amount of saline in your band can be increased or decreased through simple injections.

And so, on with the injections.

Again, I preface this information with the note that every place is different. At my place, no saline was added into the band after surgery. Trust me, your stomach will be so sore at this point that you won’t need saline to keep you from over eating. Over time, small amounts of saline are added to the band. The goal is to find your “sweet spot,” a setting where you feel full after eating only 4oz of food, and the fullness lasts three or four hours. Unfortunately that setting is different for every single person so the only way to find it to get a fill, wait two weeks, get another fill, wait two weeks, etc.

I should note that there are three main sizes of Lapband devices – 4oz, 10oz, and 14oz. Between that and the fact that everyone’s stomach lining is a different thickness, it’s really difficult to compare fill levels with other people.

I have a 14oz band, and to date I’ve had four fills. On the first fill, they added 4 ½ oz. After each fill I am instructed to have liquids for a day and then soft foods for a day before venturing back to solid food. My first fill did not restrict my eating at all. After one fill I was able to eat a salad at Golden Corral covered in steak, chicken and shrimp, and follow it up with another full plate of meat and veggies. My second fill, which added two more CCs of fluid, was much the same.

After my third fill, which brought me to 8 CCs, I began feeling major restriction. All of a sudden, all of the rules I previously thought of as “suggestions” became rules. All of the things they told me to stop doing (like drinking during meals) started making me puke. I’ve only thrown up a handful (ew) of times since the surgery and they have all been due to me breaking the rules so it’s tough to fault the procedure.

It was only after my third fill that I really felt like I had had the operation. My fourth fill, which brought me to 9 CCs, has made a believer out of me. Finally, all the reasons that made me want to have the surgery are coming true. I ate a protein bar for breakfast this morning and I was STUFFED. For dinner last night, I had a small-sized frozen dinner and couldn’t finish the dessert. Over the past couple of months I have been kind of disappointed with the procedure because I felt like it really wasn’t working, but the past couple of weeks have changed my mind. I really feel like things may change for me.

One major thing that Lapband does is affect your social life. It’s amazing how much of our lives are tied to eating. When people come in from out of town, I take them to eat. When I catch up with old friends, we go out and eat. Eating = socializing in my world, and that’s something you should really consider before having this surgery. All of a sudden I am consistently the last person done eating at every meal. People will constantly ask you about your food. They’ll comment on what, and how much, you are eating. This goes with the territory; if you can’t handle it, don’t eat around other people. Your surgery will affect the people around you. Some people will feel self-conscious eating in front of you. Some people will make comments to you. Some people will make comments after you leave. People will comment on your weight loss, and how fast or slow it’s going. They’ll tell you horror stories about people they know who have had the surgery and how terrible it went for them. Although this surgery takes place on your inside, you had better have a thick outside to go along with it. Unfortunately there is no handbook that goes along with these things. You, as I have, will learn your own way to deal with these things. Some of them may bother you and others may not.

The one thing I would stress to people considering Lapband surgery is, Lapband is not a solution in and of itself. There are cases where people have actually GAINED weight after this surgery. Lapband restricts the amount of food you can eat in one sitting. It does not stop you from snacking. More importantly, it does not make good food decisions for you. Even though you can are limited to eating 4oz of food at a time, that could mean 4oz of cake. Or worse, it could be 4oz of pudding or ice cream or shakes, things that slide right through the Lapband, add calories, and don’t fill you up.

Lapband and Gastric Bypass surgery involve many sacrifices. You have to give up carbonated drinks (that includes beer). You have to give up caffeine. I have all but given up white bread and pasta (it simply won’t go down). Whether or not the surgery is the right choice for you is a personal decision. It certainly is not “the easy way to lose weight,” as many people have told me (try giving up drinking 30 minutes before, during, and after meals and tell me how easy it is!). I am sure there are people who think less of me for having the surgery, but those who really care about me are glad that I will live longer because of it, and that for me was the ultimate deciding factor.

I wonder how many times that old pun has been used? Oh well. Here are three quickies.

* Yesterday was day four of our nine-day meatless detox period, although I have to admit we’ve snuck tiny amounts of meat into two meals now. To give you an idea of our mindset, the other night Susan fixed some “vegetarian fajitas” (for lack of a better word) and in with the mix she diced up half a chicken breast and threw it in — and afterward, we felt guilty for eating it. That’s wrong. Last night I had a salad from Sonic for dinner that contained some grilled chicken, and I felt naughty for eating it. This diet’s messing with my head. Eating grilled chicken in salads is not contributing to my weight problem; eating cookie dough and sitting on my bootay all day long is.

* Yesterday Susan and I went to Panera Bread for lunch. We each got their 2/For lunch special and got a soup and salad combo, and then a side dish of fresh fruit. (Side rant: with drinks, lunch was $21. That’s just stupid.) With our meals came a hard piece of wheat bread. I asked Susan if wheat bread was on the diet and she said not for the first nine days but I decided to eat it anyway. During the first bite I heard this noise in my head and thought, hm, what was that? Well, it was a tooth breaking off. It’s one of my wisdom teeth, which has been rotten and drilled out for years. It had a filling in it a decade ago that fell out within weeks of putting it in. It doesn’t hurt … yet … but a dentist trip is planned anyway. It’s about time, I suppose.

* As I mentioned, yesterday Susan and I had lunch at Panera Bread. On the way out the door I got a refill and took my cup with me. When I got back to work, two co-workers were walking out the door to go shopping for network stuff, so I turned back around and left with them. After shopping, they wanted to eat lunch and decided to go to … Panera Bread. So when we got there, I carried my cup back in and just got a couple more free refills as they ate. Is that wrong? Probably. I felt like the biggest criminal in the world for stealing a couple of .85 cent refills. I’d make a terrible criminal.

This weekend, Susan picked up Dr. Ian’s (host of VH1’s Celebrity Fit Club new diet book. I haven’t read it, which, by the way, does not appear to be a prime requesite for being held to its rules — one must merely be married to someone who has read the book, which is my fate.

The diet begins with a detox period lasting 9 days, during which one can only eat fruits and vegetables, beans, eggs … I think that’s it. Oh, and oatmeal. So, breakfast consisted of a bowl of oatmeal, and lunch consisted of two plates of salad with a lot of eggs, a bowl of beans, and a bowl of mixed vegetables. The idea is that the first leg of the diet is supposed to trick your body into wanting to eat right again, or some such nonsense.

All I can say right now is that my body has not been tricked, and right now my mouse is looking pretty tasty.

The funny thing about diets is that although they start at a specific point in time, they never end at a specific time. When you start a diet, a line is drawn in the sand. “By God I’m never eating a cookie again — starting tomorrow!!” But they never end that way, do they? I can’t ever remember saying, “starting next Tuesday I’m going to start eating crap!! It’s chocolate cake for me at every meal, baby!” It’s always easy to know when a diet starts, but it’s harder to tell when exactly you fell off the horse.

For a diet to work for me, you have to remove the “choice”. If a choice is involved, I’m going to make the wrong one. I’m never, ever, EVER going to pick steamed vegetables over chocolate cake. EVER. If there’s a choice involved over food, I almost always make the wrong one. The only way to correct that is to eliminate the choice. If you go to a salad bar for dinner or only stock the house with wheat bread, it gets tougher to choose poorly. But when I go to a Mexican restaurant for lunch and they serve free cheese, free chips, free tortillas, and free sopapillas with every meal … the only choice becomes, will I have seconds, or thirds?

I’ve decided that when it comes to dieting, it’s an “all or none” situation for me. Reason being, if you only do it half the time, you end up not losing any weight and you’re still miserable half the time. If you do it all the time you’re still miserable but at least you lose weight.

For lunch yesterday I had the all you can eat Soup, Salad and Breadsticks special at Olive Garden ($5.99). It wasn’t bad — I ate a lot more salad than I did soup or breadsticks. The service was actually pretty good this time. Last time we tried it, apparently Olive Garden had decided that one round of soup, salad and breaksticks was “all we could eat.” For dinner, I had chicken chow mein and white rice. White rice is kind of like fried rice, except tasteless. The chicken chow mein was good; it had enough chicken to keep the chow mein interesting.