Workout Videos Gone Wrong

In college, my roommates and I decided to dedicate a month to doing a workout video every day. This did not happen. One by one, we all stopped doing it... within two weeks. I dropped out first on the second day. Not because I was unmotivated, but because my ankles began to hurt. The video entailed a lot of jumping (jumping jacks, burpees, etc). After the first one, my ankles were a little sore. By the second one, I was limping.

I thought I had just hurt my ankles a little bit and kept walking on them like normal. After a few weeks of pain, I finally went to the orthopedic doctor. After taking CT's of my ankles, he delivered me the same news that he had told me about my hips. I had avascular necrosis in my ankles. I asked all the right questions, but there was only one that mattered. What was I going to do about it? His answer brought me to tears. He told me that there was no good treatment for avascular necrosis in ankles. Unlike my hips, ankle replacements aren't something they do in America. I think maybe in Switzerland and other places in Europe, but not the US (thanks FDA). The only option was to fuse my ankle bone. This would make me unable to move my ankle joint at all. They said it would affect my walk and I would only be able to wear flat shoes. I joked that they would have to fuse it in the shape of four inch heels like Barbie... They said no.

My next move was to go to the best orthopedist in America. I was hoping that he could offer a different solution besides Switzerland or fusion. NOPE. This time he did MRIs and said that not only was my ankle deteriorating, it hurt so much because I had a whole bunch of little fractures around it, including in my heal and bottom of my femur. Well no wonder! He put my "worse" ankle in a boot and my other ankle in a wrap, plus constant crutches. He said I would wear those until I was ready to fuse them. Woah woah woah woah WOAH. There had to be another option.

Buh-bud-da-daaahhh! Stem cells. Unfortunately, this is a practice that is not covered by insurance (thanks again FDA), but we looked into it anyways. We talked to the "best orthopedist in America" and he said it definitely wouldn't work. We then talked to the doctors who did the stem cell injections and they showed me x-rays of people who did it and regrew bone. The patients weren't exactly like me, but similar enough that I was willing to try.

The first few times I did it, they used protein plasma (which has some stem cells in it) they took from my blood. The process was excruciating. I had to be fully awake when they did it for some reason (I honestly can't remember why) and they used a live x-ray so that they could see the bone and give me an injection directly into it. They numbed the area where the needle would go in, but when they injected the cells, I literally screamed bloody murder. I think that may have been the most painful thing I've ever experienced in my life, which is saying something. For the scientific explanation, it was painful because a lot of liquid was going INTO my bone making it expand. If you've ever had growing pains, imagine all that pain over the years concentrated in to 20 minutes.

I understand why they wouldn't let my parents in the room when it was happening. When I came back for my second session, I saw the nurse who had been holding my hand the first time. She showed me the scabs where my nails had dug into her hand. I didn't even realize I had done it. I apologized to her profusely and she said it was ok- that's what she was there for. Even though it was so painful, I was able to walk like a normal human being again. I think I did five treatments overall. The last one was with my bone marrow. Compared to the ankle injections, getting your bone marrow taken from the back of your pelvis is nothing. The worst part is to hear them hammering into your pelvis. The only pains were from the numbing shots and some pressure when they actually took out the marrow. So if you ever want put yourself on the bone marrow donation list, do not be afraid of the extraction! It really isn't so bad and they will probably give you loopy medicine anyways. I encourage everyone to get on that list!! People like me need you to save our lives!

But let me step off my soapbox. The point is stem cells are AWESOME. After a few months, my bone regrew. We went back to the "best orthopedist" yada yada yada and showed him the x-rays of my regrown bone. His response? It probably regrew because I had improved blood flow, not the stem cells. Oh ok. Suuurre. Makes sense, sporadic regrowth. But here I am. Walking around! I still don't run though. I'm not sure if it's fear of fractures or because it's sound medical advice. But maybe one day... :)

Last Night's Epiphany

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.

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".

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.

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.

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.