I'm taking a quick break in my journey to share something in real time with you all. My last post was about depression and I tried to be very honest. In light of that, I also want to share with you what's going on right now.
Last night, I was lying in bed having a panic attack. I have had a few of these in the past few months and have developed a technique to deal with them. First, I turn on some music from my "sleep" play list. Next I wrap a blanket around my back and cross my arms in front of me and pull tightly. I had the idea for this because I have heard that when people with autism start having panic attacks they have someone/something hold them tightly because it depresses the central nervous system. While holding myself, I sing with the music because it helps me control my breathing. The attack usually lasts for at least 30 minutes.
When having a panic attack, everything that I try not to say to myself in daylight pops into my mind. Right now, my biggest internal struggle is not having a job. During this episode, I asked myself why not having a job was giving me panic attacks. I answered that it's because the only thing I could ever depend on was being smart. I've never had health or a love life, but I always had my brain. That was my success in life. And without having a job, I felt I was failing in my "smart" area of life. So I had lost the last thing that I felt good about.
Then I went on to how I felt betrayed by my body. This is nothing new to me. My body has betrayed me since I was born, but now, as a young adult, I feel it has betrayed me the most. On the inside, my bones break easily, only 1/3 of my lungs work, I don't produce any tears, and I can't have children (I know a lot of you don't know these things, but they will be addressed later on in my blog). On the outside, I have stretch mark scars everywhere and extra skin on my torso from all of the steroids I had to take. I honestly am not sure which one is worse: the internal or external betrayal. From the inside, things fail. From the outside, I feel ugly. And I know this is why I fail at a love life. Because I don't feel that anyone could love someone who has such a failure for a body. It's as simple as that. So the three pillars that I believe compose a life, health, love, and knowledge, are all broken for me.
As I figured this out, I had an epiphany. It shouldn't have been an epiphany because if I had told this to anyone, they would have easily said that I needed to go to therapy. But I couldn't see all of these things until I was mid-panic attack. I realized I cannot solve these issues by myself. What I've been doing is (clearly) not working. I tried to wrack my brain to figure out what I could do to feel better about my body or to try to let someone in to my life, but I honestly have no idea how. It took all three pillars completely collapsing on me to see that I need help.
This post was very difficult for me to write. I always fear rejection for what I've written in my blog. But I also feel liberated when I write down what I'm afraid to tell people. What I don't want from this post is for people to contact me and say that things will be okay and that I'm beautiful how I am or that I'm still smart even though I don't have a job. What I have said is how I feel and no matter how many times people say these nice things to me, it will not help me change how I feel about it. These kinds of feelings require more than pep talks and kind (and I know sincere) words to make me feel better.
My sister always says that everyone should see a therapist. I believe that's true. We all have something we're struggling with that we don't know how to fix. People may try to reassure you about whatever you're coping with, but it doesn't work. It may be that you're unhappy with something about yourself or you're having trouble coping with something (like an event or person). As you're reading this, I'm sure you are thinking of what it is that perhaps you struggle with. I'm not saying that you have to go to therapy, but I'm asking you to think about it. You may decide that it's not the thing for you. But you also might decide it is. I know that it's my turn to go back.
Sunday, July 5, 2015
Wednesday, June 17, 2015
It's Bad
I stared at this page for 20 minutes before I started writing. I honestly didn't know how to begin. How do you start a post about depression? It's not something that is easy to talk about and, honestly, some people don't want to hear about it. To put it simply, it's bad. Not the person, but just depression in general. It's a bad thing that people have to deal with. Nonetheless, it was a part of my story.
The first thing you should know about depression is that the person who is depressed often doesn't know they are depressed. It's nothing that anyone ever wants to admit to themselves. I wrote about having depression before- but that was some evil drugged up monster from my days in the isolation hospital that I barely remember. This was different.
I was tired all the time. I thought I was sick with a flu or something. I barely left my bed- only to use the restroom, eat food (not very often), and go to class (even less often). I had stopped showering regularly (about every three days compared to my normal once a day) and I cried all the time- but never in front of anyone and I'm not even sure what about. But I remember there was a lot of crying. And I hid it well. Eula and Caitlin were completely unaware. They would ask me to come out with them and I would just make excuses until finally they stopped asking. I slept all the time- probably only awake 5 or 6 hours a day. And I took ambien at night because I had slept the day away. It was bad.
The first time I was told I was depressed was by my sister, Brandan. She and I had gone to dinner together at the Hula Hut. She was the first person with whom I was honest. I started by telling her I didn't know what was wrong with me- I was crying all the time, slept all the time, didn't want to eat, and just felt sick in general. I can still remember exactly what she said, not that it was a complex sentence. She said, "Bean, you may have depression". She said she had seen it in someone else close to her and this was exactly what it had looked like. I laughed at that. My mind went No way- you don't have depression. Depression is really bad and you are not really bad. And I said that to her. She told me that it was bad. Everything I had just told her was bad. I had lost weight from not eating and stopped caring about doing anything. That's bad. I started laughing again until I began tearing up. And that was the first time I thought that I might have depression.
That night I went home and laid in bed again. Brandan told me I had to tell Mom and Dad. She said that I needed help and it wasn't something I could do on my own. I did not want to tell my mom and dad because I felt stupid for having depression. Why couldn't I just be happy? Why can't I choose to be happy? It was frustrating. So I called Mercedes instead. I told her what Brandan and I had discussed and she agreed with B. I had to tell Mom and Dad. So finally I called.
I need to preface this with the fact that my mom and dad are fully supportive of me and everything that I had to deal with in depression. But when I first told them, they didn't understand. They had never dealt with depression and never really been explained how it worked. So when I called them crying and saying I thought I had depression, they kind of went - what are you talking about? I had been hiding it from everyone, including them, so they were completely blindsided. They just didn't understand what I was saying and I wasn't doing a good job explaining it to them. Also, I don't think any parent every wants to hear that their baby is depressed. I got frustrated and upset with how they were reacting so I hung up and called Mercedes again. She helped calm me down and then called Mom and Dad. My mom was in Austin the next day.
Now I have no idea what Mercedes said to them to make them understand what was happening to me, but I am so grateful that I had her. She talks with people who deal with psychological problems for a living so she was able convey what depression really was to my parents who didn't understand. I was so lucky to have people who understood what depression was instead of hearing me say it and then ignoring it because they didn't know what it was or how to help.
So my mom stayed in Austin with me for two weeks while my dad held down the fort at home. Enough to get me to start showering and eating again. She went to all of my classes with me and got me back to normal sleeping hours. She was so amazing, I can't even begin to describe. She was literally with me 24/7 for two weeks- leaving Florida and anything she was supposed to be doing to come take care of me. I was put on antidepressants to help me feel better. But it's never an instant fix and sometimes antidepressants aren't enough. It's not like I woke up one morning and said "I'm happy! I'm cured!". I soon had to go to Cincinnati for my regular check up and saw Mercedes for the first time since I had admitted to being depressed. One night it was just Mercedes and I awake and I broke down to her. I told her that I was tired of everything. Tired of being sick or broken all the time. I told her something that I have never told anyone else. I said that if I got really sick again, I didn't think I would fight back. I was tired of fighting illnesses and didn't want to do it anymore. I look back at that now and I hate that I thought that. It's not who I am. But depression does awful things to a person.
So here's my spiel: If someone ever tells you they are depressed, they need you. It's bad. They need you to understand and not brush it off. And there are things that you should and shouldn't say to them. They don't want to hear "it'll be okay" (because they don't see that right now) and "cheer up". What they do want to hear is "you are important", "what can I do to help", and "I'm here for you".
The first thing you should know about depression is that the person who is depressed often doesn't know they are depressed. It's nothing that anyone ever wants to admit to themselves. I wrote about having depression before- but that was some evil drugged up monster from my days in the isolation hospital that I barely remember. This was different.
I was tired all the time. I thought I was sick with a flu or something. I barely left my bed- only to use the restroom, eat food (not very often), and go to class (even less often). I had stopped showering regularly (about every three days compared to my normal once a day) and I cried all the time- but never in front of anyone and I'm not even sure what about. But I remember there was a lot of crying. And I hid it well. Eula and Caitlin were completely unaware. They would ask me to come out with them and I would just make excuses until finally they stopped asking. I slept all the time- probably only awake 5 or 6 hours a day. And I took ambien at night because I had slept the day away. It was bad.
The first time I was told I was depressed was by my sister, Brandan. She and I had gone to dinner together at the Hula Hut. She was the first person with whom I was honest. I started by telling her I didn't know what was wrong with me- I was crying all the time, slept all the time, didn't want to eat, and just felt sick in general. I can still remember exactly what she said, not that it was a complex sentence. She said, "Bean, you may have depression". She said she had seen it in someone else close to her and this was exactly what it had looked like. I laughed at that. My mind went No way- you don't have depression. Depression is really bad and you are not really bad. And I said that to her. She told me that it was bad. Everything I had just told her was bad. I had lost weight from not eating and stopped caring about doing anything. That's bad. I started laughing again until I began tearing up. And that was the first time I thought that I might have depression.
That night I went home and laid in bed again. Brandan told me I had to tell Mom and Dad. She said that I needed help and it wasn't something I could do on my own. I did not want to tell my mom and dad because I felt stupid for having depression. Why couldn't I just be happy? Why can't I choose to be happy? It was frustrating. So I called Mercedes instead. I told her what Brandan and I had discussed and she agreed with B. I had to tell Mom and Dad. So finally I called.
I need to preface this with the fact that my mom and dad are fully supportive of me and everything that I had to deal with in depression. But when I first told them, they didn't understand. They had never dealt with depression and never really been explained how it worked. So when I called them crying and saying I thought I had depression, they kind of went - what are you talking about? I had been hiding it from everyone, including them, so they were completely blindsided. They just didn't understand what I was saying and I wasn't doing a good job explaining it to them. Also, I don't think any parent every wants to hear that their baby is depressed. I got frustrated and upset with how they were reacting so I hung up and called Mercedes again. She helped calm me down and then called Mom and Dad. My mom was in Austin the next day.
Now I have no idea what Mercedes said to them to make them understand what was happening to me, but I am so grateful that I had her. She talks with people who deal with psychological problems for a living so she was able convey what depression really was to my parents who didn't understand. I was so lucky to have people who understood what depression was instead of hearing me say it and then ignoring it because they didn't know what it was or how to help.
So my mom stayed in Austin with me for two weeks while my dad held down the fort at home. Enough to get me to start showering and eating again. She went to all of my classes with me and got me back to normal sleeping hours. She was so amazing, I can't even begin to describe. She was literally with me 24/7 for two weeks- leaving Florida and anything she was supposed to be doing to come take care of me. I was put on antidepressants to help me feel better. But it's never an instant fix and sometimes antidepressants aren't enough. It's not like I woke up one morning and said "I'm happy! I'm cured!". I soon had to go to Cincinnati for my regular check up and saw Mercedes for the first time since I had admitted to being depressed. One night it was just Mercedes and I awake and I broke down to her. I told her that I was tired of everything. Tired of being sick or broken all the time. I told her something that I have never told anyone else. I said that if I got really sick again, I didn't think I would fight back. I was tired of fighting illnesses and didn't want to do it anymore. I look back at that now and I hate that I thought that. It's not who I am. But depression does awful things to a person.
So here's my spiel: If someone ever tells you they are depressed, they need you. It's bad. They need you to understand and not brush it off. And there are things that you should and shouldn't say to them. They don't want to hear "it'll be okay" (because they don't see that right now) and "cheer up". What they do want to hear is "you are important", "what can I do to help", and "I'm here for you".
Monday, June 8, 2015
Foggy Times
The last post featured both hips. But in between those surgeries, there was another... experience. When I went back to school in August, my vision started becoming blurry. No, not blurry, foggy. Initially, I assumed it was something to do with my dry eyes. However, after a trip to my ophthalmologist, he was like "daaayum Gena, you got cataracts". Well that's what I heard at least. I'm guessing he probably broke it to me in a much kinder, easier way, but that's what I like to think happened since I don't actually recall it. Cataracts is a foggy film that covers part of your eye making it difficult to see. Usually, people don't get this until they are pretty old. But guess what caused mine? Steroids- shocker! Because steroids are the devil.
So we set up a time to do one eye and then the other- one in August, one in October. I did the first one at this amazing hospital in Austin. I have no idea which one it was, so don't ask Austinites. They even had these hospital gowns that had pockets in them that they blew warm so that you didn't freeze. Also, we did the surgery ON MY BIRTHDAY. So they fixed up a room with lights for me and sang! I think they felt really bad for me. So this was probably the nicest hospital I have ever been to. The surgery went really well and I woke up from my surgery and offered to drive, like you do when you've been sedated. Keep in mind I was on crutches with a fresh hip replacement for my right hip and could literally not drive. Physically impossible. My mom gracefully declined. I don't remember this happening.
I wore an eye patch for a week and went around talking like a pirate because why the hell not. Finally, the patch came off. OH. MY. GOD. The first thing I said was "There is no way in hell I should have been driving". I'm pretty sure I could have been certifiably blind. Like I couldn't read signs or really see the lines on the road- especially in daylight. I spent the next few days shutting one eye and then the other. My new, cataract-free eye had the most vibrant colors I had ever seen! I couldn't get over it! When I went back, I asked the doctor if the colors were always this vibrant and I had just gotten used to the cataracts. He told me that, as people age, they slowly lose the vibrancy because they very slowly get cataracts. Basically, I had eyes of a newborn and it was brilliant (haha pun). So all you people reading this- you are missing out on the vibrancy! But don't worry- one day you too can get your cataracts removed.
Naturally, after the first eye, I got the second eye because is was still hella foggy. This time I had the surgery done at a different hospital. It was not my birthday, they did not have awesome warm hospital gowns, and it was rather lackluster compared to the other hospital. Then, while they were doing the surgery, something must have happened because I suddenly became aware of what was happening. My eye opened and was very blurry. I said something out loud- I have no idea what- and then my doctor said to me "Genevieve, I need you not to move your eye please". I said okay and then promptly went back to sleep. So that was horrifying. I'm going to preface this next part with a) I do not remember this and b) sedation can seriously alter your personality. APPARENTLY, I woke up and then started telling the nurse about how horrible their hospital was and all the great things about the other hospital. So yeahhhhh. I felt pretty bad about that in retrospect.
And yes- I again offered to drive. My mom said no.
So we set up a time to do one eye and then the other- one in August, one in October. I did the first one at this amazing hospital in Austin. I have no idea which one it was, so don't ask Austinites. They even had these hospital gowns that had pockets in them that they blew warm so that you didn't freeze. Also, we did the surgery ON MY BIRTHDAY. So they fixed up a room with lights for me and sang! I think they felt really bad for me. So this was probably the nicest hospital I have ever been to. The surgery went really well and I woke up from my surgery and offered to drive, like you do when you've been sedated. Keep in mind I was on crutches with a fresh hip replacement for my right hip and could literally not drive. Physically impossible. My mom gracefully declined. I don't remember this happening.
I wore an eye patch for a week and went around talking like a pirate because why the hell not. Finally, the patch came off. OH. MY. GOD. The first thing I said was "There is no way in hell I should have been driving". I'm pretty sure I could have been certifiably blind. Like I couldn't read signs or really see the lines on the road- especially in daylight. I spent the next few days shutting one eye and then the other. My new, cataract-free eye had the most vibrant colors I had ever seen! I couldn't get over it! When I went back, I asked the doctor if the colors were always this vibrant and I had just gotten used to the cataracts. He told me that, as people age, they slowly lose the vibrancy because they very slowly get cataracts. Basically, I had eyes of a newborn and it was brilliant (haha pun). So all you people reading this- you are missing out on the vibrancy! But don't worry- one day you too can get your cataracts removed.
Naturally, after the first eye, I got the second eye because is was still hella foggy. This time I had the surgery done at a different hospital. It was not my birthday, they did not have awesome warm hospital gowns, and it was rather lackluster compared to the other hospital. Then, while they were doing the surgery, something must have happened because I suddenly became aware of what was happening. My eye opened and was very blurry. I said something out loud- I have no idea what- and then my doctor said to me "Genevieve, I need you not to move your eye please". I said okay and then promptly went back to sleep. So that was horrifying. I'm going to preface this next part with a) I do not remember this and b) sedation can seriously alter your personality. APPARENTLY, I woke up and then started telling the nurse about how horrible their hospital was and all the great things about the other hospital. So yeahhhhh. I felt pretty bad about that in retrospect.
And yes- I again offered to drive. My mom said no.
Tuesday, March 17, 2015
My Hips Don't Lie
So things were going along pretty well. Infusions were being tapered off, I was in college at UT, and I was feeling pretty good overall. One day I was carrying my laundry down the stairs and my hip started hurting. I didn't think anything of it and continued about my day. This went on for over a month until I went home for summer break. It was hurting every day and I was constantly limping around so I went to a chiropractor. Not the best idea, but we thought it would help at the time.
We went twice to the chiropractor and it did nothing to help. So we ended up going to a doctor. He had me move around, watched me walk, and then took some x-rays. Then he came back and told me that I had avascular necrosis in my hips. The right one was worse than the left because it had already fully cracked.
For my friends who don't speak medicine, avascular necrosis is when your bones begin to die due to lack of blood supply, especially in joints, leading to fractures and breaks. So I had this awesome bone disease and it had already fracture my right hip. Let the surgeries begin!
I had my right hip done in June of 2010. Because of the atrophy from being in the hospital, my muscles were still not back to normal- about 70%. They had given me an epidural so that I wouldn't feel anything when I woke up from the surgery because apparently that would have been bad. They took me off the epidural after 2 days and I started "walking". Ok, more like shuffling. They gave me a walker the first day, but I was able to just use crutches the next day. I was on crutches for about a month and then just used a cane. When I got back to college, I was down to a limp and my right hip felt great!
Written out like this, the process seems somewhat easy. But it definitely wasn't. There was a lot of pain and a lot of drugs. I felt very helpless. I couldn't move easily or quickly and I had to be very careful. If I rotated the wrong way, it could pop out. If I stepped on it the wrong way, it would pop out. If someone stepped on me, the world would explode. Things like that. And the physical therapy. Aka PT. Aka pain and torture. I HATED PT. The worst was the leg lifts. You laid on your side and tried to lift your leg. At first I couldn't even lift it- someone had to help me lift it. And I couldn't do it with a shoe on for about 2 months. Considering that they cut a 6 inch hole into the outside of my leg, this exercise was by far the hardest. The muscle was pretty destroyed and I still find that it is my weakest leg muscle. So yeah. Pain and torture.
You may think this hip story is over. But wait. Part Two: The Left Leg! In October, I had rehabilitated pretty well. I wasn't really limping anymore and then BAM. Left hip hurts. It was the same old, same old. It had cracked and needed replacing. So repeat of above, but this time over Christmas break. This time, I only had my already-surgeried-on right leg to keep me standing. So it was a bit harder than before. I was still on crutches by the time school started again. I think it took me 3 months this time to get off crutches. But I did do it!
And now I can walk, I can talk, and I can even walk AND talk. They said it would probably be 15 years before they needed replacing again. I'm betting on 30.
We went twice to the chiropractor and it did nothing to help. So we ended up going to a doctor. He had me move around, watched me walk, and then took some x-rays. Then he came back and told me that I had avascular necrosis in my hips. The right one was worse than the left because it had already fully cracked.
For my friends who don't speak medicine, avascular necrosis is when your bones begin to die due to lack of blood supply, especially in joints, leading to fractures and breaks. So I had this awesome bone disease and it had already fracture my right hip. Let the surgeries begin!
I had my right hip done in June of 2010. Because of the atrophy from being in the hospital, my muscles were still not back to normal- about 70%. They had given me an epidural so that I wouldn't feel anything when I woke up from the surgery because apparently that would have been bad. They took me off the epidural after 2 days and I started "walking". Ok, more like shuffling. They gave me a walker the first day, but I was able to just use crutches the next day. I was on crutches for about a month and then just used a cane. When I got back to college, I was down to a limp and my right hip felt great!
Written out like this, the process seems somewhat easy. But it definitely wasn't. There was a lot of pain and a lot of drugs. I felt very helpless. I couldn't move easily or quickly and I had to be very careful. If I rotated the wrong way, it could pop out. If I stepped on it the wrong way, it would pop out. If someone stepped on me, the world would explode. Things like that. And the physical therapy. Aka PT. Aka pain and torture. I HATED PT. The worst was the leg lifts. You laid on your side and tried to lift your leg. At first I couldn't even lift it- someone had to help me lift it. And I couldn't do it with a shoe on for about 2 months. Considering that they cut a 6 inch hole into the outside of my leg, this exercise was by far the hardest. The muscle was pretty destroyed and I still find that it is my weakest leg muscle. So yeah. Pain and torture.
You may think this hip story is over. But wait. Part Two: The Left Leg! In October, I had rehabilitated pretty well. I wasn't really limping anymore and then BAM. Left hip hurts. It was the same old, same old. It had cracked and needed replacing. So repeat of above, but this time over Christmas break. This time, I only had my already-surgeried-on right leg to keep me standing. So it was a bit harder than before. I was still on crutches by the time school started again. I think it took me 3 months this time to get off crutches. But I did do it!
And now I can walk, I can talk, and I can even walk AND talk. They said it would probably be 15 years before they needed replacing again. I'm betting on 30.
Monday, February 2, 2015
My Biggest Regret
Well the good news is that the worst is over. But I hate to say that it isn't a pretty picture from here on out. There is still a lot to the story.
Everyone knows that hindsight is 20/20. But damn- I really wish I had a premonition or something. My family and I went to St. Maarten right before I was going begin university. We were all so excited to get away and soak up the sun. Now the transplant team had warned me that I needed to stay out of the sun because it can make you get GVHD. We bought a UV suit (long sleeves and pants that kept out UV rays) and a giant hat. I stuck to the shadows. I did what I thought was right. But in the end it was all wrong. And if there are any BMT patients reading this- I swear- do NOT go in the sun.
While on the vacation, I began to get very lethargic. I just wanted to sleep on the couch instead of enjoying the island. When I got home, my skin started turning very red- like lobster red. Soon my mouth began hurting. I had sores all over and I couldn't eat. My skin started peeling off in large chunks. I had gotten GVHD of the skin and mouth. So we started up with more immune suppressants and steroids again. But this time it was chronic instead of acute (like during my intestinal GVHD). I had done it to myself and it is by far my biggest regret of my life.
Soon I began my freshman year of college. I met my AMAZING roommates Caitlin and Eula. They were great. They saw my centimeter long hair and my odd body shape, but they accepted me as a sister. But things were not great for me. I had become so itchy- we still have no idea why. I had to take high doses of sleeping pills to sleep because of the itching and I would make my mom stay on the phone with my while I laid there scratching. To this day, I still think that extreme itching is far worse than pain. And the peeling skin was bad. It came off so thickly on the bottom of my feet that it made it hard for me to walk. {sorry for the graphic details}
Then one morning I woke up and my eyes hurt so badly. I had no idea what was happening. Luckily, Eula had some eye drops and let me use them. It was such a relief. I made it to the eye doctor finally and was told I was no longer producing any tears. I had GVHD of the eyes.
I don't know how to express how disappointed I was. I felt like it just kept piling on. First the skin (which I was so self conscious of), then the mouth (making it hard to eat), then the eyes (making it hard to see). My eyes had gotten so dry that I had formed patches over my cornea so that everything was blurry all the time. Ever since then I have had to put in eyedrops every 15-45 minutes. It never went away.
I was getting weekly infusions. To do these I had to have someone drive me because I would get an IV in the crook of my arm, get a ton of Benedryl so that I didn't react to the blood products, and get an infusion of IVIG and high dose steroids. This usually was a 5 hour process. It was pretty much always my sisters who drove me- Carina and Brandan. And a lot of the time (especially when I first had to do this), they would stay with me for the whole 5 hours. And I would always pass out from the Benedryl. So they would bring their work and quietly sit by me as I snoozed, go get me lunch, and gently wake me to eat something. Then they would drive a drowsy Genevieve home. Once a week. For five hours. FIVE HOURS. Seriously- my family is the best! And this went on for a few years. I have the scar in the crook of my right arm to prove it.
Everyone knows that hindsight is 20/20. But damn- I really wish I had a premonition or something. My family and I went to St. Maarten right before I was going begin university. We were all so excited to get away and soak up the sun. Now the transplant team had warned me that I needed to stay out of the sun because it can make you get GVHD. We bought a UV suit (long sleeves and pants that kept out UV rays) and a giant hat. I stuck to the shadows. I did what I thought was right. But in the end it was all wrong. And if there are any BMT patients reading this- I swear- do NOT go in the sun.
While on the vacation, I began to get very lethargic. I just wanted to sleep on the couch instead of enjoying the island. When I got home, my skin started turning very red- like lobster red. Soon my mouth began hurting. I had sores all over and I couldn't eat. My skin started peeling off in large chunks. I had gotten GVHD of the skin and mouth. So we started up with more immune suppressants and steroids again. But this time it was chronic instead of acute (like during my intestinal GVHD). I had done it to myself and it is by far my biggest regret of my life.
Soon I began my freshman year of college. I met my AMAZING roommates Caitlin and Eula. They were great. They saw my centimeter long hair and my odd body shape, but they accepted me as a sister. But things were not great for me. I had become so itchy- we still have no idea why. I had to take high doses of sleeping pills to sleep because of the itching and I would make my mom stay on the phone with my while I laid there scratching. To this day, I still think that extreme itching is far worse than pain. And the peeling skin was bad. It came off so thickly on the bottom of my feet that it made it hard for me to walk. {sorry for the graphic details}
Then one morning I woke up and my eyes hurt so badly. I had no idea what was happening. Luckily, Eula had some eye drops and let me use them. It was such a relief. I made it to the eye doctor finally and was told I was no longer producing any tears. I had GVHD of the eyes.
I don't know how to express how disappointed I was. I felt like it just kept piling on. First the skin (which I was so self conscious of), then the mouth (making it hard to eat), then the eyes (making it hard to see). My eyes had gotten so dry that I had formed patches over my cornea so that everything was blurry all the time. Ever since then I have had to put in eyedrops every 15-45 minutes. It never went away.
I was getting weekly infusions. To do these I had to have someone drive me because I would get an IV in the crook of my arm, get a ton of Benedryl so that I didn't react to the blood products, and get an infusion of IVIG and high dose steroids. This usually was a 5 hour process. It was pretty much always my sisters who drove me- Carina and Brandan. And a lot of the time (especially when I first had to do this), they would stay with me for the whole 5 hours. And I would always pass out from the Benedryl. So they would bring their work and quietly sit by me as I snoozed, go get me lunch, and gently wake me to eat something. Then they would drive a drowsy Genevieve home. Once a week. For five hours. FIVE HOURS. Seriously- my family is the best! And this went on for a few years. I have the scar in the crook of my right arm to prove it.
Wednesday, November 19, 2014
Real Friends and a Make-A-Wish
So it's been a really long time. I know. But I'm ready to start again. Before I go into medical things, I just want to quickly say how grateful I am to have amazing friends who stuck with me. During Christmas break of 2008, my best friend, Loren, came to visit me in Cincinnati. She gave me a big hug as soon as she saw me, despite my new, hairless and round appearance. I remember having to ask her to help me stand up and she did it without making me feel embarrassed. And best of all, she asked me questions. Loren wasn't afraid of me. Her first question was "why do you have to walk up the stairs that way?". At the time, because of my atrophied body, I would literally grab hold of the railings and pull myself up step by step. And I explained this to her without shame because she was there with me and did not judge me because she was a true friend. But my transplant really did let me know who my real friends were. And to name a few: Angela, Briana, Jordan. These friends saw me at my worst, but treated me like I was normal.
So I had recovered for a year. Right after my 19th birthday, I got to take my Make-A-Wish trip to New York. And it was AMAZING. While there, I saw three musicals: Mary Poppins, Lion King, and (my favorite) Wicked. They arranged for me to go backstage before the shows for both Mary Poppins and Wicked. I got to stand on the stage of Mary Poppins and speak with the cast. For Wicked, I went backstage and met some of the cast and tried on a costume. That was a wonderful opportunity I wouldn't have had otherwise. Also, I went to the empire state building. The staff let me go to the very top (I didn't know there was more of a top than the observation deck, but there is!). Unfortunately, my trip was cut short because I needed to go back to Cincy for some more testing and treatment. But that's ok. I still had fun! Here are some pics from the trip! (I still look kinda transplant-y in these)
So I had recovered for a year. Right after my 19th birthday, I got to take my Make-A-Wish trip to New York. And it was AMAZING. While there, I saw three musicals: Mary Poppins, Lion King, and (my favorite) Wicked. They arranged for me to go backstage before the shows for both Mary Poppins and Wicked. I got to stand on the stage of Mary Poppins and speak with the cast. For Wicked, I went backstage and met some of the cast and tried on a costume. That was a wonderful opportunity I wouldn't have had otherwise. Also, I went to the empire state building. The staff let me go to the very top (I didn't know there was more of a top than the observation deck, but there is!). Unfortunately, my trip was cut short because I needed to go back to Cincy for some more testing and treatment. But that's ok. I still had fun! Here are some pics from the trip! (I still look kinda transplant-y in these)
Trying on a coat and hat from Wicked (the Emerald City song).
Dad and I eating at the restaurant under the bridge in NYC.
Wednesday, June 18, 2014
Released with Visitors
Finally, in November, I was released from the hospital. It was so nice to be free! Now, as Carina mentioned, my mom left Cincinnati to go be with Carina for a few weeks while she was at the end of her pregnancy. It was pretty difficult for me when she left, but I also had some backup fly in! Specifically Joyce, Dave's mom, came in to help. Also, my best friend, Loren, and my grandmother, Matto came to take care of/visit me, too!
It was amazing to have Joyce there. And since my brain is a little fuzzy, I think it would be best if she could remember for me.
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I wasn't quite prepared for what would unfold over an extended winter weekend spent in Cincinnati. Excited about seeing Gena, knowing she was in the midst of her very long journey to recovery. I was thinking a lot about our reunion. What I hadn't expected was that I would be reconnecting with a rather fragile and frail young woman, who was miles from the vibrant teen that I had spent time with just several months before. When I signed on to keep Gena company, so Mercedes' mom would be with Carina and Jason, I planned on playing a few board games and maybe watching some old movies together. Instead, I would witness Gena work so hard simply to draw enough strength to stand from the sofa. Dave and Mercedes' butler pantry would become a satellite pharmacy with vials and syringes and medications that appeared way too much for a petite person. I wanted to help in some way, but when I looked deep into Gena's tired and beautiful eyes, I saw the perseverance and fight that she possessed.
Yes, we had the thrill and anticipation of waiting for Jim and Val's first grandchild, and for Matto a great grandchild. Such delight! But at the other end of the spectrum, Matto and I would prepare a quiet cup of tea as we shared stories of family and life, whispering the time away and hoping Gena would be comfortable for that hour. And at center of it all was a wonderful father, adoringly caring for his daughter, fiercely wishing that he could trade places with his little girl, but in truth, the very best thing he did for her was to give her better medical care than any doctor or nurse ever could have provided. (Sorry, Dave and Mercedes!)
At last, Carina was in labor. The house was alive with excitement. That night, we all went to sleep, dreaming of sweet little babies, only to wake to the wonderful news of Sophia's arrival. A beautiful baby girl would begin the next generation of the Dullum family. This would be the shot of adrenalin that would ignite Auntie Gena. That very morning would be one I will remember for my lifetime. Since her return home from the hospital, Gena was bound to the main level of the house because of the climb of a full flight of steps. But a burst of joy at Sophia's arrival and the promise of the bright future caused Gena to defy any challenge. The stage was set...We all glared at that endless staircase. Yes, Jim's brilliant idea of blasting the Rocky theme from his laptop, began the feat. Matto and I clapped and cheered from the living room, louder than any major sporting event could garner! Step by step, Gena would climb that mountain, fearlessly forging upwards. Nothing could get in her way.
As I slid into my seat on the United Embraer, heading back to New Jersey. I smiled and teared at the same moment, as I reflected on a very special weekend spent with a very remarkable person!
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Having Joyce there was a life saver. As she said, I was very weak. I could barely (and sometimes not even) lift myself off of the couch or a chair without help. I was "training" to do steps by wearing a belt around my waist so that someone (like Joyce, my dad, my sister, my mom, etc.) could hold on to me in case I fell. As Joyce said, Sophia had come and everyone was happy. That was my first motivation to get up the stairs- I was happy for one of the first times in a while. My second motivation was that my best friend- Loren- was coming to visit me in Cincinnati and I needed something to show for myself. My final motivation was that I was bribed. That's right- bribed. Ali Kwiatkowski, Dave's sister, Joyce's daughter, my great friend, had gone to seen Wicked (my favorite musical) and had gotten the cast to sign a poster for me wishing me well. It was so generous of her to take the time to do that for me- so truly special. I think that's when I knew Ali and I would be the best of friends.
So everyone cheered me on as the Rocky theme song played in the background. My dad and Dave flanked me in case I fell. But I didn't. It was one of the hardest climbs I've ever had to do- both physically and mentally. I left the main floor so that I could finally sleep in a real bed after months of sleeping on a couch or blow up bed. I couldn't have done it without everyone. By no means was my climb pretty, but I did it. I literally had to grab on to the hand railing with both hands in order to help hoist myself up one stair at a time. BUT I DID IT. And I think everything really did start getting better from there.
It was amazing to have Joyce there. And since my brain is a little fuzzy, I think it would be best if she could remember for me.
----------
I wasn't quite prepared for what would unfold over an extended winter weekend spent in Cincinnati. Excited about seeing Gena, knowing she was in the midst of her very long journey to recovery. I was thinking a lot about our reunion. What I hadn't expected was that I would be reconnecting with a rather fragile and frail young woman, who was miles from the vibrant teen that I had spent time with just several months before. When I signed on to keep Gena company, so Mercedes' mom would be with Carina and Jason, I planned on playing a few board games and maybe watching some old movies together. Instead, I would witness Gena work so hard simply to draw enough strength to stand from the sofa. Dave and Mercedes' butler pantry would become a satellite pharmacy with vials and syringes and medications that appeared way too much for a petite person. I wanted to help in some way, but when I looked deep into Gena's tired and beautiful eyes, I saw the perseverance and fight that she possessed.
Yes, we had the thrill and anticipation of waiting for Jim and Val's first grandchild, and for Matto a great grandchild. Such delight! But at the other end of the spectrum, Matto and I would prepare a quiet cup of tea as we shared stories of family and life, whispering the time away and hoping Gena would be comfortable for that hour. And at center of it all was a wonderful father, adoringly caring for his daughter, fiercely wishing that he could trade places with his little girl, but in truth, the very best thing he did for her was to give her better medical care than any doctor or nurse ever could have provided. (Sorry, Dave and Mercedes!)
At last, Carina was in labor. The house was alive with excitement. That night, we all went to sleep, dreaming of sweet little babies, only to wake to the wonderful news of Sophia's arrival. A beautiful baby girl would begin the next generation of the Dullum family. This would be the shot of adrenalin that would ignite Auntie Gena. That very morning would be one I will remember for my lifetime. Since her return home from the hospital, Gena was bound to the main level of the house because of the climb of a full flight of steps. But a burst of joy at Sophia's arrival and the promise of the bright future caused Gena to defy any challenge. The stage was set...We all glared at that endless staircase. Yes, Jim's brilliant idea of blasting the Rocky theme from his laptop, began the feat. Matto and I clapped and cheered from the living room, louder than any major sporting event could garner! Step by step, Gena would climb that mountain, fearlessly forging upwards. Nothing could get in her way.
As I slid into my seat on the United Embraer, heading back to New Jersey. I smiled and teared at the same moment, as I reflected on a very special weekend spent with a very remarkable person!
----------
Having Joyce there was a life saver. As she said, I was very weak. I could barely (and sometimes not even) lift myself off of the couch or a chair without help. I was "training" to do steps by wearing a belt around my waist so that someone (like Joyce, my dad, my sister, my mom, etc.) could hold on to me in case I fell. As Joyce said, Sophia had come and everyone was happy. That was my first motivation to get up the stairs- I was happy for one of the first times in a while. My second motivation was that my best friend- Loren- was coming to visit me in Cincinnati and I needed something to show for myself. My final motivation was that I was bribed. That's right- bribed. Ali Kwiatkowski, Dave's sister, Joyce's daughter, my great friend, had gone to seen Wicked (my favorite musical) and had gotten the cast to sign a poster for me wishing me well. It was so generous of her to take the time to do that for me- so truly special. I think that's when I knew Ali and I would be the best of friends.
So everyone cheered me on as the Rocky theme song played in the background. My dad and Dave flanked me in case I fell. But I didn't. It was one of the hardest climbs I've ever had to do- both physically and mentally. I left the main floor so that I could finally sleep in a real bed after months of sleeping on a couch or blow up bed. I couldn't have done it without everyone. By no means was my climb pretty, but I did it. I literally had to grab on to the hand railing with both hands in order to help hoist myself up one stair at a time. BUT I DID IT. And I think everything really did start getting better from there.
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