The Making Of Ed

Many things have shaped my life as I'm sure that everyone can say. However, nothing has been such an influence on my life as the disease, Myasthenia Gravis that I have.

Following is what has shaped my life.

I had a good childhood, nothing devastating. I always played sports and was good at everything I did in them. I was a "tier 2" athlete as I was always third best on the team where the top two went to all stars. I was the little guy who always listened to the coach and tried his hardest to get better. I didn't really have enemies, but some people did not like that I was always going and always trying to improve, because that is what was put into my head at a young age.

In high school, I was always the youngest, having an end of Sept birthday, meant that I did not have my license until a month into my senior year. I was one of the smallest, not in height, but I was always moving, so did not have much body weight and what was there was not fat. I never had much confidence as a kid because of this and didn't start coming into my own until I was out of high school.

I commuted to college, because all my friends were younger and still in town. I felt comfortable there, I'm not one to throw myself into an uncomfortable environment. Throughout college I worked in the kitchen at Red Lobster, and started there after football season my senior year of high school. I was an OK student, but was not into college. I know I needed to go, but I was really into working and making money. I was saving so much money, because all I did was go to class, go home and work. Because of this, and the fact that I changed majors, I ended up getting my degree in six years.

I was going through life pretty good, had 20k in the bank, going to school, had a good girlfriend, and had fun playing all my sports when I could.

Then my life got thrown upside down. One day while walking to one of my classes my eyes felt a little weird and I started seeing double. I was able to refocus, and figured I was just tired. Later that day, it happened again, and this time it stayed. I could see out of either eye OK, but when both eyes were open, I saw two perfectly good images, with one being on top and to the right of the other. I did not do drugs, except some beer. I did not smoke, I never smoked weed, I was your all American clean boy to the point of nausea, and now I was seeing double.

I went to different kinds of eye doctors, and nobody could see anything wrong. As far as they were concerned I was fine. However, I WAS SEEING DOUBLE DAMMIT!!! I finished out that semester by wearing sunglasses and taping one of the eyes so that I only saw one image. I drove to school, went to class with my head down, just trying to get thorough the day. When I came home, I could not work anymore, and I couldn't play my sports, so I hibernated. My girlfriend at the time was good looking but needy. I could not deal with needy, so I broke up with her, not even giving her a chance.

Then I was sent to a neurologist after a couple of months of other doctors. He put me in the hospital for tests. Xrays, MRIs, blood tests, and even a spinal tap. Injected me with something to test for Myasthenia Gravis, and did not get a positive reaction. More tests, more days, more seeing double with no answers. Finally they tested me again for the MG and got a positive result. I was able to see one image. Yipppeeee, cured, glad that's over!!! No, not to happen, this test only lasted 5 minutes, then back to double vision. Now also with the double vision, my eyelids were drooping. I didn't want to look at anyone, because by now my eyes were so bad that you saw that they were out of alignment.

Now that the doctors knew what it was, they could explain it to me. Myasthenia Gravis is an autoimmune disease where the antibodies in your body attack the nerve endings that send signals to your muscles and tell them when to work. The antibodies were confusing my muscles and not allowing them to work correctly, so they started to get tired and fail. I was told that MG is a rare disease and when it happens, it happens in younger women, and older men, like men over 60. I was F***ing 22 and in top shape, what the hell is this about. he doc also told me that had it been 10 years earlier, they would not have known what they know now and I would have died. For me, it started with my eyes not tracking together because my eye muscles were not in sync. Then it started attacking my arms and legs and they started giving out on me.

One incident of this was when I went to my dad's softball game for work. This was a work league and I had been playing with this team since I was little and tagging along with dad. I had become a major part of the team and was relied on for my good ball play in the field and hitting. I was also pretty fast, and surprised a bunch of people with my speed. So, now seeing double I was on the bench just watching and supporting the team. I was not used to being on the bench watching, I was always in the game. My dad and the captain of the team knew I was going out of my mind just sitting there. So, when out team got up to bat, they gave me a bat and told me to try. I was so excited to do something again. I closed one eye, stepped into the box and smacked one up the middle. I took off for first base and three steps down the line, my right leg gave out and I went face first into the dirt. I had no idea what happened, it never happened before. I got up embarrassed, and started to sprint again, I took a step, pushed off and my leg gave out again and back into the dirt I went. I got up again, and my legs felt really weak. I hobbled my way to first base and collapsed again. There was not a sound on the field. We had played this team before and they knew me and how good I was. My own team knew how good I was. However, today.... I was flopping around the dirt like a fish out of water. Nobody moved. I looked at my dad and he had horror written all over his face. As I walked back to the bench, the captain of the team was crying. He knew what was going on because my dad had told him earlier about the disease, but seeing me like that crushed him. My dad himself tried to hold himself together to support me. I got to the bench, sat down and never felt so embarrassed in all my life. I wanted to explain, but couldn't, so I kept my mouth shut and silently cheered on the team the rest of the game.

The doctors game me different kinds of medication, Mestinon, which I was supposed to take every 4 hours. Did this for a few weeks, and nothing changed. They started me on Prednisone (cortisone steroid) and nothing happened. The Prednisone was increased and kept on increasing, and finally two weeks later, I started to see a difference. The drugs made me feel a little weird, some emotions were exaggerated and I was urinating like every 10 minutes. I was also thirsty all the time.

Finally I was able to see 100 percent correctly and my arms and legs felt really good. I was back to my old self again. I ignored what the doctor was saying while I was seeing double because I really didn't care. Now that I was normal again, I started to listen. Prednisone is like a wonder drug, it helps so many different diseases. However, it has many many more side effects than diseases it helps. Following are some of the side effects: Weight gain, water retention, depression, insomnia, frequent urination, liver starts to break down, kidneys start to break down, bones start to lose density and become brittle, skin becomes thin and bruises more easily, body can't heal itself as fast, body can't fight off diseases as fast, and the list goes on. I heard him, but I didn't care, I could see again!!!!! Since I was thin, I thought the weight gain was awesome.... however, it never stopped. After a while I had what they call "moon face", where the face blows up and is round, and makes you look fat. My belly, which used to be the six pack was looking more like a keg.

The doctor said that I could not continue on such a high dose (120mg every day) because it would kill me. He gave me my options. One, take high dose of Prednisone every day which would kill me. Two, blood washing twice a month where they take out all your blood, filter it of the antibodies and put it back in. Three, have a Thymectomy, where they take out your thymus gland. The thymus gland lies behind the breastbone of your body, up near your neck. It produces antibodies when you are first born and then other parts of your body start producing them and the thymus usually shrivels up. The problem at the time was that to take out the thymus, they had to do just like open heart surgery, and split my breastbone open and cut open the bottom of my neck. This operation had a risk to it as there was a good percentage of patients that died from it. Decision time, and my parents left it up to me. It was a no brainer for me, cut me open. When asked if I was scared because of the operation, I told people no, because if anything bad happens, I won't know it anyway. I'd be dead, and I was OK with that.

In order to do the operation, they needed to make sure my body could take it, so I had to go through a bunch of tests. One was a breathing test to make sure that my lungs and chest muscles were strong enough. I was blowing the needle off the charts. The nurse was shocked. When I asked her why, she said that she just did the same tests to an older man who had the same disease and he could only get to 20% and he was happy about that. He had told her that he got up in the morning, brushed his teeth and then had to lie back down because he was exhausted. Wow, that hit me. There is no way that I'll ever get to that point, because I would kill myself before that happens to me. They took a couple of units of blood from me in the weeks leading up to the surgery, so that they can put it back in if I lost too much blood.

My surgery was scheduled for Jan 2nd, a day after new years. For the few weeks leading up to the surgery, I stayed home, cut all ties with my friends, and waited. I didn't want anyone caring about me. I told everyone that I didn't want visitors in the hospital because hospitals are boring and I had to be there, nobody else needed to be bored. The hospital was in New York City, and I live in New Jersey. It was a busy ride into the city, and I didn't want anyone going through the trouble for me. I was ready mentally to go.

I got there with my parents the night before the surgery. They put me in a room and then covered my chest with iodine. Then they told me to get my rest, with this crusted iodine all over my chest. They needed to shave me in the morning, in the ER and needed to make sure I was germ free.

I remember the ride to the ER. Just a gown on, nothing underneath and a blanket over me. Being pushed on a gurney through the hospital, with everyone we passed looking at me. I could see the wonderment in their eyes trying to figure out what was wrong with me. I'm brought into this white operating room and put on this table with my arms outstretched, looking like I was put on the cross to die. All kinds of IVs, wires, and whatnot are put onto my arms and legs. An oxygen tube was put in my nose as well as a mask put over my face. That is the last I remember.

As I'm waking up in ICU, I'm out of it and want to sleep, so I turn over on my side. However there are all these things sticking out of me. However, I am so out of it, I don't know that they are there, all I know is that I can't turn over to sleep on my side. I kick around and finally get on my side. All of a sudden doctors and nurses are dropping out of the ceiling putting me on my back, and telling me that I can't turn over, but all I hear is yelling at me. I have no idea what is going on. Ends up the simplest thing set this all off. The stupid clip on my finger that measures oxygen in my blood had come off and sent the machines into a tizzy.... flatlined. Hence the rush of the doctors. While in ICU and starting to get my head back, but can't really control myself. I feel nauseous an start to throw up, just oozing out of my mouth. The doctor puts a pan under my chin to catch the remaining stuff. Two minutes later, I feel it coming again. the doctor puts the pan by my mouth and I sit up and puke all over him. I was told that he almost lost it himself at that time. He told me that because my chest was wide open, I had tubes sticking out of my sides that went into my lungs to drain them. He also told me that he needed to pump out my lungs and stomach. He said that he'd do my lungs first and had me tilt my head back and put a tube up my nose and told me to cough, and I did what I was told, made sense to me. He took the tube out and then said that he was now going to pump out my stomach and to tilt my head back. WHAT!!!! I figure that you can get to my lungs from up my nose, but my stomach is NOT up my nose!!! If anything my brain is up there not my belly. he assured me that he knew what he was doing and up the nose he went. he told me to swallow so that he can get into my stomach. I swallow and he pushes, and pulls it out again saying that he was in my lungs again. How the hell this doc knew where the end of that hose was and that it was in my lung and not my stomach still boggles my mind, but he knew it. After about 12 hours in ICU, me and my friend the doc were both babbling idiots as me having surgery, and him being there 15 hours straight.

After I was awake enough they decided to move me from ICU to my room. However first they have to take out my decathator. Sure, but I don't even know what it is. This gorgeous looking nurse comes up to me letting me know taht she is going to take it out. Then she raises my gown, and yanks this tube out of my penis!!!!! HOLY F!!!!! Now I know what that is called.

They take me to my room and there is this big old black nurse sitting there. Hello, I'll be monitoring you all night, and will be here for the next three days. HUH!!! My own private nurse! Hell no, I don't need this, I'm just fine. After I woke up the next morning, I convinced everyone that there was no need for her. After a while, this hot young nurse comes in to change my IV line and put in into a different spot. No problem miss, you can do whatever you want to me. She puts in the IV into my hand and leaves. Half hour later, my hand is hurting pretty bad and it's turning yellow. I sit here starting to wonder if something is wrong. Another nurse comes in to check on me, and I ask her if my hand is supposed to look like that. She freaked, the other nurse missed my vein and they were pumping stuff just into my hand and it was filling up with whatever was in the IV. Hmmmm, maybe I should have said something, but the nurse was so hot, I didn't want to get her in trouble. Anyway, a couple of hours later the surgeon and the anesthesiologist come in. I recognize the drug doctor and call him a jerk, right in front of everyone. They all look shocked! I followed up that I wanted to see how long it look for the knockout drugs to knock my *** out, and he never told me. Everyone laughed seeing I was just kidding around. I didn't want anyone feeling bad for me. The surgeon then asked how I felt and if I could sit up. So, I just sat up, no arms or anything, just popped up. Once again the room was shocked! He told me that I shouldn't be able to do that because all my muscles had been cut just hours before. Well, nobody told me and he asked if I could sit up, what the hell am I supposed to know. Then he tells me to hug a pillow and cough to stir up the gunk in my lungs. I hold the pillow and cough. HOLY F that hurt!!! Being the macho man I thought I was, I asked the doc how many stitches he used. You know because you are more manly when you have more stitches to brag about. Then it was his turn to shock me. He said what stitches, you don't have any stitches. Ummm doc, what is holding my chest together? He says, surgical tape. UMMMMM TAPE!!!!! My friggin chest is held together with TAPE!!! He added that I did have my breast bone wired together too, and if I see a wire pop out of my skin to just let him know and he'll cut it. Yeah, right, I'm going to pop a wire out of my chest and be calm about it. Anyway, after everyone leaves, my parents just sit there shaking their heads and say, "only you Ed, only you".

That night the awesome looking nurse comes in and is with another just as hot nurse, and they are talking. For some reason, I think that when they took out my thymus, the installed a set of balls. They are talking about what club they are going to after work. I perk up and start moving as if I'm getting up, and they ask what I'm doing. I told them that I was going to get ready to go to the club with them. They cracked up about that one, and thought I was cute. DAMN!!!!!

Day three in the hospital and I'm supposed to be there for seven frickin days and I'm already going crazy. They are allowing me to try and get up to try and walk. I haven't been taking the morphine that they wanted to give me, so I was pretty clear headed. I took the pole with all my tubes to my lungs, my IV and whatever else and I start walking the ward. Then I start to walk outside of the ward. I'm now walking all over the place like a caged animal. The nurses let the doctor know that I'm up and around and he comes to see me, and is impressed again. He said that if I felt this good that maybe he'll let me go earlier than seven days. Doc, pack my bags because I'm out of here!!! It is damn boring here!!!

The next morning, the doc comes bright and early asking how I'm doing. I pop up and tell him I'm ready to leave. Well, he was not ready to let me know until I did some things to prove myself.... bring it on! I did everything and convinced him to let me go. He told me that he just had to take the tubes out of my lungs first. I called my parents and told them to come on in that I was leaving. They were confused as it wasn't seven days, it was only four, but they came to get me.

Time to take the tubes out of my lungs. I'm with the doctor, and my buddy from the ICU comes in to watch how the doc does this. He tells me to take a breath, blow it out and tighten my stomach muscles and he is going to jerk the tube out and pull the stitch closed. One, two, three, inhale, exhale, tighten, tug and OUCH!!!!!!! That hurt!!!! Didn't really expect that one, so the second one I'll be ready for. The doctor looks to my buddy the ICU doc and asks if he wants to do the other. He's never done it before and shows a little concern. I said to him, hey, don't worry about it, you won't feel a thing!!! After a big smile he agrees to do it. Ready, one, two, three, inhale, exhale, tighten, and tug! and then bigger tug! OUCH again, I thought there was only one tug, where in the book did it say that there were two!!! I look up and the doctor says to the ICU doc that he needs to tug really hard and really long until the whole tube is out and then pull the stitch. Ohhhhhhhh.... friggin rookie!!!!

Ok, so I'm all set to leave, got everything on and just waiting for the paperwork. Damn, I hate paperwork! It took an hour just for that. Anyway, homeward bound.

I get home and show off my wounds and freak out all my friends, and am proud of it. Then I decide to try and show them I can do a push up. I get on my knees, put my hands down and straighten out, bend my arms and OUCH! Definitely not a good idea and smashed my face on the ground, not doing that again!!

OK fast forward two weeks. I ask the doctor if it is OK to return to work. He said that I can do some light work but be careful. The following week I'm working 30 hours.... and loving it.. I'm making money again. In one year, I spent 20k that I had saved and had nothing. It was time to start rebuilding my life again. I decide that I need to focus my life on making as much money as I can immediately because you never know when this will hit again. So, over the next year and a half, I work my *** off at Red Lobster, averaging 60 hours a week while finishing school. If you are my girlfriend, then I will see you around work, sorry, but this is what I have to do. After I graduate, my mom gets me a full time job at AT&T. I continue to work at Red Lobster at nights and on the weekends. My boss at AT&T knows I need to leave immediately at 5:00, so that I could get to my shift at Red Lobster that begins at 4:30. Yes, you are reading that right. I told them that the earliest I could get there is 5:15 and they schedule me at 4:30. For the next year and a half I only had off Thanksgiving and Christmas day. I was working an average of 80 plus hours a week. I slept after getting home about midnight until 7 in the morning and at lunch time I went home and took a half hour nap. Like clockwork I was making money. I was making double money because I was always at work, so I couldn't spend any.

While at AT&T, I met a woman that I was in an office with and we were the only two in that room. Hence we talked a lot. She is a year older than me, and we got along really well. She thought I was absolutely nuts working so much, but when I explained what I needed to do, she understood. She was an independent woman who had been out on her own since she was 19. She was now 26 and I was 25, still sleeping at my parents, but not really living there because I worked so much. Well, needless to say, we became close and began dating, with the understanding that I told her that my mission right now is work first life second. Since she was OK with that, I was OK with that. Well, I'll save that for another story. However we did end up getting married and I had 50k saved in the bank in three years.

Well, if you stuck with me and read this whole thing, then maybe you understand just a little more about me. I am still on high doses of prednisone, and every once in a while I have relapses and see double, however, I have not gone into Myastenic crisis which is when your throat muscles can't keep the throat open and the muscles that expand your lungs start to give out, and you have to be rushed to the hospital.

Thank you for caring to read this story, and every word of it is true as to how I remember it.




emoenjr emoenjr
46-50, M
11 Responses Jan 11, 2013

I am sitting here crying while reading your story. I am so happy to read about the same condition I have, from a person that is so determined to live life and not accept anything less then the best quality of life. Thank you.

Thank you for sharing this experience Ed. You seems like an amazingly strong person. I'm sorry that you had to go through all of this, but it just goes to show what doesn't kill you only makes you stronger. I hope that you feel better now. Take care my cyberspace friend!
Lizzy

So many myasthenics on here are new to the disease and very scared. I generally pop around the stories and try to cheer people up and offer advice. I had the thymectomy at 15 over 25 years ago. Had a good run in remission and then MG started creeping back. Now I take Prednisone, Mestinon and Imuran. It good to see others who can offer words of encouragement and advice. There are tons of us out there. Were the ones dragging our butts and slurring like a drunk college kid.
Take care, Buddy!
Jay

Fab Story!!! You were very Brave, Silly at times, but Very Brave!!! Take Care Now!!

Wow that is a lot to go through :/ i hope i hope you never go through that mayastenic crisis, that sounds horrible x_x

Thank you

Boy! You have suffered so! Prednisone is not fun at all! You are a strong person ! Keep it up!

Thank you for understanding

I never knew......

It does sound like MS. When you say blood cleaning you mean Plasmspherisis? I had that because at the time I had no other option and they thought that would work. It sounds like you've come a long way. Good for you. Your a fighter like me and don't let the disease get you down like myself. We all have to deal with whatever god has delt us

Yes about the Plasmapherisis, I just figured that blood cleaning was easier to spell lol... thanks for the comments.

That procedure was horrible

Hey how r u now?

Actually I'm good right now, but if you had asked me a week ago, I was seeing double again. It started around Xmas, and lasted about a month. Thanks for asking.

Are u a healthy person?

Define healthy... I still have MG, plus some other crap, but generally yes.

R u overweight or are u a healthy weight.can I ask what age r u?

I'm 48, 250lbs and 5'11" and yes consider myself over weight in the belly where the prednisone attacks.

2 More Responses

Thanks for sharing your story, your truly a strong person. I wish nothing but the best for you.

Thank you very much!!! I appreciate it!

Truly amazing Ed! You had me tearing up then turning around and laughing. You are such a nut! I agree w/your parents, "only you Ed, only you" The only thing I disagree with, because you know I can't really disagree with the truth to your life, is the title. I don't think this is the making of you. There is so much more to you. Yes you got handed a huge blow, and it's something you deal with day to day, hour to hour, minute to minute. A humbling experience to say the least. You are a true and wonderful friend. Thank you for sharing something so deep and personal. (((HUGS)))