The story of what happened to my right wrist is a long one, because of it's ridiculous length I tire of telling it over and over again. I don't remember the exact dates of all of my surgeries or of any of the other events but over the past year and 11 months (and still counting!) I have had 8 surgeries and countless other procedures and tests, (injections, wound vacuum placement, X-rays, MRI's, etc.) I have had every single color cast at least once. (I've had purple 16 times & pink 14 times) and I have 6 different types of braces and splints in my arsenal. I think it goes without saying that I've had a bit of a hard time with this darn wrist! But anyway, the series of medical events according to my memory are as follows..
August 2009
My family and I were vacationing in Ocean City Maryland. One of the days out of the week that we were there, we were relaxing after a long day spent body surfing.
In the pool back at our condo, my siblings and I were taking turns doing different kinds of flips, dives and jumps into the water from the side of the pool. I'm sure I did a great job making my mom nervous as I did loads of cartwheels and round offs into the water because most of them brought me inches from hitting my head on the concrete. However, at that time I was unaware that I was doing a great deal of damage to my right wrist.
Shortly after our time at the pool was through my wrist was "locked up" and it was pretty painful to try to move it at all. (If I had only known what I know now, that whole day would have been completely different!)
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| O.C. 2009 this is the last picture taken of me completely healthy and pain free. |
Later that month and in the months that followed I noticed a small bump on the back of my wrist under the skin, that got bigger and bigger as time went on until;
January 2010
when I finally went to my pediatrician about it because I lost almost complete range of motion in my hand. The diagnosis? A ganglion cyst. Nothing even worth talking about really. Unless of course, you're me.
My pediatrician gave us the name of a hand surgeon and sent us on our way. As soon as we left his office, my mom called and set up an appointment with Doctor Raymond Ragland lll.
Doctor Ragland has done 7 out of my 8 surgeries. The first of which was the removal of the cyst which was on
February 1st 2010
(That was supposed to be the only one!)
Recovery from the incision of the cyst removal surgery was pretty quick surprisingly. But I was still in constant pain long after the stitches were removed. This, having been my first surgery, I thought perhaps what I was feeling was normal post operative pain. I tried to convince myself that somehow the feeling of my arm being on fire and sensitive to even the slightest touch was somehow normal and that it would soon recede.
The pain only gets worse instead of better over time.
Once I started physical therapy after being casted for a few weeks, things took a turn for the worst. (As if this horrible pain weren't enough, there's more!) The physical therapist was having me do what seemed like the simplest exercises with my hand and I could not do them without being in a lot of pain! My physical therapist sent me back to doctor Ragland to see if there was anything else going on especially once he saw that my wrist clunked when I moved it a certain way which he found to be quite worrisome.
Immediately after seeing the way my wrist looked when moving from side to side at my next appointment, Dr. Ragland said he thought I had a torn ligament between the Scaphoid and the Lunate bones in my wrist. He decided it would be best to cast me through the entire summer to see if it could be fixed without being invasive. (Fine by me! The last thing I want is more surgery!)
Needless to say that didn't exactly work out according to plan so when
September 2010
rolls along I find myself going under the knife again to fix the ligament damage caused from those stupid cartwheels and flips I wish I never did.
My surgeon went in with a scope in three different places so he could burn the ligament from a few different angles to put it back together.Once it was repaired. he put in two stainless steel pins that ran straight through my wrist to stabilize it.
The next surgery was to remove the pins a few weeks later.
Some time passed and during that time you would have thought I was going to be finished having all these problems. It seemed that way for a short while, especially when I got discharged from physical therapy and my surgeon dared to utter the words "come back if you need to but you can start to go back to your life! "
We were so excited after hearing this that a celebration was needed! My mom and I went to Manhattan that Saturday to celebrate my progress.
But the following Saturday at my little sisters 13th birthday party. Things got a bit scary when my skin ripped as if it were a piece of paper (not to gross but that's the best I could describe it!) naturally, I kinda freaked out! Mostly because I was shocked that my skin just ripped and was bleeding everywhere, and also because of the pain.
The next office day we went to Doctor Ragland's office for an emergency appointment (which was Tuesday so it wasn't really much of an emergency appointment was it?).
He put silver nitrate in the wound on my wrist. (OUCH!)
( In case you don't know, silver nitrate really hurts if it comes in contact with a wound! It kind of burns to create an artificial scab.)
Later that same night the silver nitrate slid off the wound, most likely because of the moisture from the wound being kept under a band aid. So the next Monday after that (Monday is Dr. Ragland's day in the operating room) I was in surgery having a wound closure procedure.
I had a full blown panic attack beforehand because I wasn't having anesthesia so I thought I was going to feel everything!
I only had a local anesthetic for this surgery so I was awake through the entire thing! I was sooo scared! And while I did not feel the ENTIRE surgery, I did feel him cutting twice because the anesthetic started to wear off. (He injected more when I screamed.)
Two weeks after that surgery I got my stitches out.
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| Right before getting the stitches out. |
Half an hour after getting my stitches out my wrist opened up again.
(let me explain,
it is not uncommon to have very small amounts of bleeding after having stitches removed. So on the way home from the office after getting the stitches out my wrist was bleeding a bit, especially from the spots where they had to kind of dig at the skin because the stitch was embedded.
When I got home I very gently used a piece of sterile gauze to clean off the now dried blood.
As soon as I wiped off the blood my skin came off with it.)
( Let me remind you, I very gently wiped off the blood!)
This time it was opened even bigger than before. And bleeding more than before also.
After a week or so I was back on the operating table having a skin graft surgery (I am beyond tired of this stuff!!!!!!)
To get me through until the surgery, I had lidocaine and cortisone injections in various spots all over my hand. (Dr. Ragland took a pinch graft from the palm side of my wrist and put it on the other side over the wound and while he was at it he did a tendon release in my thumb because I had severe tendinitis that previous rounds of steroid injections didn't help.
(In case it wasn't made clear so far, MY WRIST HURTS!)
(This next part is where I think it might get a little gross. Well, at least it is to me because I have the mental picture every time I think about this part of the story of what my wrist looked like. So if you have a weak stomach or anything of the sort, you may want to not read on.)
The week or so after the skin graft surgery was a painful one. There were complications starting as soon as I woke up from this procedure.
The combination of drugs given for the pain in addition to the anesthesia was making me forget to breathe. As a result, my blood oxygen level was really really low. This was scary for everyone there especially my mom who wasn't allowed to come back to see me yet but she was receiving updates. So someone had to make sure that I didn't doze off again from the medicine so I would continue breathing. I remember one of my nurses and Dr. Ragland both trying to keep me awake and one of the things I remember hearing them say was that if I didn't stay awake then they were going to have to put a breathing tube in.
(This didn't make much sense to me because I was still able to breathe for the most part as long as I was awake and focusing on breathing so what would be the purpose in putting a tube down my throat?. Perhaps they were just trying to scare me...) Staying awake was a chore though, everything that they had just pumped through my veins was telling me to go to sleep. While everyone around me was telling me to try and stay awake.
The combination of drugs given for the pain in addition to the anesthesia was making me forget to breathe. As a result, my blood oxygen level was really really low. This was scary for everyone there especially my mom who wasn't allowed to come back to see me yet but she was receiving updates. So someone had to make sure that I didn't doze off again from the medicine so I would continue breathing. I remember one of my nurses and Dr. Ragland both trying to keep me awake and one of the things I remember hearing them say was that if I didn't stay awake then they were going to have to put a breathing tube in.
(This didn't make much sense to me because I was still able to breathe for the most part as long as I was awake and focusing on breathing so what would be the purpose in putting a tube down my throat?. Perhaps they were just trying to scare me...) Staying awake was a chore though, everything that they had just pumped through my veins was telling me to go to sleep. While everyone around me was telling me to try and stay awake.
I was in a cast once the surgical dressing was removed a few days later. I was unaware that under the cast there was a 2 inch wide 3 inch long gaping hole on the palm side of my wrist because of rubbing against the cast material, but I could feel it there. I also didn't know that the graft was now necrotizing, or that both sides were becoming more and more infected each day spent covered but I could feel it, and with the infection and the dead flesh, I could smell it. (I told you it was gross!)
When Dr. Ragland removed the cast, I could see his hopeful expression leave his face as soon as he saw the hardened, black tissue on the back of my wrist that was once the skin graft. (though you would have never known!) accompanied by the greenish yellow pus all around and under the edges of the dead graft and the red inflamed tissue all around the entire area. Consternation shows even more so, once he sees the other side of my arm.
The running stitch that once held the incision together at the donor site was history. The incision was wide open so it's now a huge laceration that spans across my entire wrist and it is deep.
He let out a long exhale as he decided what should be done.
(just a side note: I'm supposed to be going to Hershey park with all of my friends on Friday. I already have my ticket. At this point in the story it is Wednesday.)
Doctor Ragland decided the best treatment route would be to cast it again, but this time, the cast will have to have two "windows" cut with the cast saw over each of the wounds so that I can change the dressing twice a day and he put me on an antibiotic to fight the infection.
The next day when I came home from school I got out my supplies to do my dressing changes. (it's Thursday and We haven't gotten a chance to pick up my antibiotic prescription yet.)
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| This is one of my dresser drawers in my bedroom full of mostly wound care supplies. |
Once I uncover the wounds I immediately see that the the infection is 10x worse around the graft.
I put a nonstick dressing on that side and turned it over to take care of the other side and planned on calling my mom and telling her that the infection is worse after I am finished changing the dressings for both of the wounds.
When I removed the piece of Telfa on the wound from the donor site, I literally screamed in pain and shock of what I saw. I immediately picked up my phone and called my mom. (I was freaking out!)
The laceration was REALLY infected and when I went to carefully remove the "nonstick" dressing it was stuck to dried blood and pus on the wound but it came off with such ease that I didn't know that it was stuck until I felt and saw the hole in my wrist that opened because the Telfa tore off a section of the fragile, exposed dermis within the wound. (This was one of the scariest things I've ever seen in my life!!
I could literally see inside my arm! I was bleeding quite a bit but the hole was big enough that could still see inside my wrist.)
The red fleshy underlying tissue was completely exposed with the bone not too far beneath.
In my bedroom. with my dog across the room laying down. Not exactly a sterile environment! It was as if I was in the middle of a surgery and the surgeon just left my arm open and woke me up. I could see literally EVERYTHING!
When I moved my fingers I could see all the muscles, ligaments and tendons in MY wrist working to perform all of those movements in a way that i never thought was possible! (I mean how many people can say they have seen inside their arm enough to observe how everything works from a point of view that usually belongs to a surgeon?!) despite how cool the situation may have been though, I was still scared! .. I was afraid I was going to get an infection even worse than the one I already had and lose my hand! Or that I would get something like MRSA!) My mom answered the phone and I told her I needed her home NOW! I told her what happened and she said that she was on her way. She also said that I need to call doctor Ragland and tell him what's going on rather than her do it because I was there looking at it.
Doctor Ragland told me to go to the hospital. So I called my mom back and relayed the message. She said that she had just gotten off the phone with him as well and she told them she was going to look at it when she got home.
When my mom got home I met her at the door and showed her my wrist. Her immediate response was "yeah we are going to the emergency room, let's go" so she had me go pack an overnight bag (just in case)
while she called doctor Ragland back and we waited for my dad to get home from work which only took about 15-20 mins. She told Him that she saw it and I absolutely need to go to the ER. She worked out a plan with him so that he would meet us at the emergency room and he would treat me as a private patient there. (that was in everyone's best interest. I don't like switching doctors and He is well aware of that and no one wanted a repeat of the last time my doctor got switched!.... Let's just say I was not a happy camper!)
We dropped my sisters off at my moms friends house (no sense in making them sit in a waiting room all night!) and made our way to Virtua hospital in Marlton NJ.
When we arrived Doctor Ragland was there. (thank the lord!) I got a bed almost immediately.
They got an IV started with some fluids and then Dr. Ragland asked to see my wrist. When I showed him he was absolutely SHOCKED at how bad the wounds had gotten in just one day! He immediately ordered a round of IV antibiotics and they pushed a syringe of Hydromorphone "dilaudid" (which is 4 times stronger than morphine & it just barely took the edge off!) but when he went to go fill out paper work because he was admitting me a nurse stopped him and told him that they do not accept pediatric patients at that hospital. No exceptions. So I was transferred by ambulance to the brand new Virtua hospital in Voorhees NJ which was only 3 days old!
I was directly admitted and scheduled for surgery Friday morning.
(I'm not going to Hershey park.)
I was the 2nd person to ever be in my room! Ever! The hospital has all private rooms & they are soo nice! & I was Dr. Ragland's first case/surgery in this hospital which was also really cool.
But although it is a great hospital, that didn't make that first night any easier or change the fact that I HATE hospitals!!
I had never been in the hospital overnight before & my mom wasn't able to stay with me that night because she had to be home to get my sisters off to school in the morning. My dad couldn't stay with me either because he had to go to work the next day so I was alone.
She didn't want to leave me but I told her she could. That I would be ok and the nurses reassured her that they would take good care of me. (I regretted that decision!)
That night was really hard. The pain was hardly bearable and I had all different kinds of doctors coming in and out asking me questions, taking blood, asking to see the pictures that my mom and I had taken through out almost this entire process, taking the dressing off to see the wounds. & they all ask the same questions over and over again!! It's so annoying!!! So by about the Fifth doctor I just listed all the answers to the protocol/routine questions and gave a brief case history before they could even say hello and tell me their name. Then when I finished talking I handed them my iPhone already open to the pictures that my mom and I have been taking of my wrist with each new dressing change.
(perhaps that was a bit rude of me but at that time, I did not care. I was so tired and I was in so much pain I did not want to talk to anyone & offending them was at the bottom of the list of things I cared about.)
The doctors were not offended at all though. They were actually impressed that I memorized all of the questions and they loved that I had the pictures which made their job a lot easier.
I didn't sleep that night.
The next morning my mom came back which made me so much happier! I wasn't allowed to eat anything all day or night that night or Friday morning because of the surgery. (If I had known that I would have had lunch in school on Thursday! But I didn't so I was STARVING!)
I had to wait for Doctor Ragland to arrive but I was already in PreOp when he got there so he scrubbed up and I said goodbye to my mom before they wheeled me back to the OR.
They hooked me up to all of the monitors, strapped my arm down, fastened the restraints around my legs and waist, and the last thing I remember is Doctor Ragland telling me they were going to take an X-ray to check for osteomyelitis. Then the anesthesiologist pushed the syringe with the sedation medicine in it, and before I could freak out because I realized what it would mean if I had osteomyelitis, I was out.
(osteomyelitis is an infection in the bone and if you have it they have to remove any and all affected bone before it spreads which means amputation!) I woke up a few hours later in PostOp and I looked to make sure I still had a hand. It was still there! But it was REALLY HURTING!
I had no idea where I was and I could barely see because my vision was blurred both from the anesthesia and from the tears that were flowing. My arm felt like it was on fire! In addition to feeling swollen and those wounds didn't exactly feel good either. My nurse came in and I was barely awake. I asked where my parents were. She said they were in the waiting room and I had to be more awake for them to come in but I told her I wanted them NOW so she went and got them. My dad had gotten to the hospital while I was in surgery & I was glad to see him.
I was told that I got to see Doctor Ragland but I don't remember seeing him much less anything he said to me but my mom told me what he told her about the surgery the next day so that made up for my forgotten conversation.
The surgery was to debrieve the wounds. So basically he scraped off all of the dead tissue and cleared out the infection but the wounds were left open.
I had on a really big/bulky dressing and my arm was raised and secured from the elbow down in a big yellow foam block that looked ridiculous and it was a pain to keep my arm in it.
Doctor Ragland was on vacation that weekend but it was a working vacation because he was working on my case all weekend while he was away. (Or so he says..)
So because he couldn't be there he was on the phone back and forth with the doctors that were taking care of me in his absence and he had one of his partners come see me at the hospital.
(Doctor Berkowitz I'm sure is probably a great doctor. I greatly appreciate him coming to treat me. But like I said, I don't like switching doctors and now I think I have every reason to feel that way after seeing him!)
(Have you ever gone to a diner and see the sugar sitting on the table that looks like it's been there for FOREVER? but it's still good right? That's because sugar has antibacterial properties. So knowing this, Doctor Berkowitz, being the genius that he is, took packets of sugar out of the pantry and dumped it into my wounds!
It. was. HORRIBLE! Imagine taking sand and just rubbing it In an open wound all day and all night long! It hurt so bad! And the wound on the palm side of my wrist had a lip on one side of it that the sugar was getting underneath so again, sand in between the skin and the flesh of my arm rubbing 24/7! he may as well had used salt! I was not happy!)
I still could barely sleep at all without being woken up by the IV pump, the pain, the nurses, the doctors, or anything of the sort.
(Again I say, I HATE the hospital!) Every time I moved my arm with the IV in it, the pump started beeping which kept waking me up so they moved it lower down my arm but after a while the IV got messed up so the IV team nurse (whom I have become well acquainted with) moved it again so my regular nurse had to put my hospital bracelet on my ankle. Because of this, every time they had to scan it to give me meds they had to wake me up!
It was a hard week spent in the isolation room that I had to be in because of the infection. The pain and lack of a full night of sleep made it even harder but I pushed through because I did not want to spend my 16th birthday in the hospital! One of my nights there I received an entire room full of visitors! There was at least 15 people in my room! I loved every minute I was able to have them there. Most of them stayed until my nurses kicked them out because visiting hours were over.
When I finally got to go home it was just before my birthday (June 8th)
I went straight from the hospital to Doctor Raglands office which I was on strict orders to do. They gave me a large dose of hydromorphone right before I left through my IV so I would make it to His office without screaming and crying when I got there. (luckily his office is about 5 minutes away from the hospital) But I was still crying my eyes out as soon as I got in the car and it took everything I had and my mom holding me on the exam table once there while I was waiting for Dr.Ragland to come in not to scream. But I did end up scaring probably half his patients because when he came in my mom told him about the sugar and he took the dressing off to look at it, that is when the screaming commenced.
They had almost the entire nursing staff/techs in the exam room doing different things. Some were holding me still with my mom, some were trying to calm me down, & some were getting various supplies for him to work with.
Doctor Ragland didn't let anyone touch my arm (He has known me for a while by now and knows that I am constantly in a lot of pain even though he can't figure out why because I am still in this much pain even when there aren't any physical abnormalities. Although I really don't want anyone at all to touch my arm at all I think we both know that if it has to be touched, it should be him.)
So he did everything.
(I felt kinda bad about this afterwards because I was laying down so it was a really hard angle for him & I was screaming & crying the entire time. Talk about a stressful working environment!)
He used saline to gently rinse out all of the sugar which was not an easy task because it was held on for the most part by neosporin so he had to carefully use a piece of gauze to wipe off what he could.
(I screamed louder)
(I was crying my eyes out! It hurt soo bad!
By the way, you should know that Doctor Raglands office is usually a really Quiet office and I think the majority of the patients are adults so I don't think they are used to hearing or seeing what was going on when I was there.)
When he was finished he put a dressing on the wounds and sent me home with a prescription for some really heavy pain meds. I went home and slept for days straight.
Even though I was glad I wasn't in the hospital anymore, I was still upset because I was home in bed for my birthday and I had a home care nurse come put a vacuum on the wounds
In a desperate attempt to get them to heal.
(Some sweet 16 that was.)
I absolutely hated that wound vac! Not only was it loud but it was soo annoying to have to disconnect the tubes every time I got changed or anything like that. And it was so embarrassing!
(A wound vac basically consists of a nonstick dressing, a piece of foam cut into a shape that wraps around to both wounds, and a big suction cup on top of the foam which is attached to a really Long tube connecting to the machine. On top of the part that is connected to my wrist is this really thin, clear sticky stuff called "Tegaderm" that's like tape and it is wrapped around the area to create a seal for the vacuum which is really painful to remove)
It was really embarrassing to carry it around because the tube went up my arm and connected to the machine that I carried around in a Phillies string bag and despite my best efforts to hide the machine, There were still people that got grossed out if they saw the canister filled with blood and other fluids from the wounds and especially if they saw it moving through the tube. People would either ask about the machine so I would have to explain what it does and then they would get grossed out, or they would say something like "eww what is that?!?" (embarrassing!) and it would be random strangers walking through the mall or even friends from church. (luckily for me I didn't have to go to school for the rest of the school year because that would have been torture! They probably would have acted like it was a catheter or something.)
I had the vacuum for about 3 or 4 weeks. Throughout those weeks I had to have visits from home care nurses at least once a week (I thought those were for old people..) and I also had numerous appointments with doctor Ragland so that he could keep an eye on the progress and to watch for any infections starting and for any skin break down. Due to how painful it was to have the Tegaderm removed when they had to change the tubes, eventually my nurse and Dr. Ragland both started giving me a pair of gloves and letting me be the one who removed everything because that way I screamed a bit less.
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| Follow up appointment with Dr. Ragland when he decided to start letting me take care of removing the vacuum. |
I was so happy when I finally got it off! Especially because it worked! The wounds were healing really fast with the help of the vacuum. Before long the tissue started to hyper granulate and then the skin began to heal all around the wounds making them smaller and smaller until they were almost completely closed! I had to have a dry dressing for another 2 weeks or so and then they were healed!! I was so excited! I was going to go to physical therapy and then once I finished I would get my life back! I could go back to playing piano, swimming, and working again! I even told my boss I should be back to life guarding and teaching swim lessons in no time! I even paid to have my piano tuned the very next day because I was so excited to be able to play piano again!
But that only lasted a day or so.
The skin on my wrist ripped in one Tiny little spot and then again in another little spot and then it completely opened up again. (I was so excited that I was getting my life back that I started trying to use my hand way too much too fast despite the pain which caused more damage. I have decided to never use this hand again!
picture how skin peels from a sun burn, only turning into an open wound and much thinner skin. That's what happened to the skin on the back of my wrist.)
As soon as it opened I went and told my parents and my mom called Doctor Ragland and set up an appointment for the next day.
(I may as well forget about going back to my life right now because that's not going to happen any time soon. I will have to get used to the fact that even though my piano may be tuned to perfection, not a single note will be heard from it unless it is played by someone other than myself. Swimming and teaching swim lessons can definitely be crossed off the list as well because it seems as though my hand will never heal and this pain is never going to subside.)
When we went back to see Dr. Ragland, He said he was at the end of his rope and didn't know what else to do. So he decided it would be best If I went to see a plastic surgeon. So he had his assistant on the office phone Calling every plastic surgeon they could find in the area that they knew and trusted to find out if they took our insurance, (A lot of plastic surgeons accept cash only!)
He was on his personal cell calling around (how many doctors do you know that will take out their own cell phone to do something for their patient? I don't know of very many.)
and my mom was on the phone with our insurance company trying to get names of surgeons in the area that take our insurance. (Like I said it's a difficult process because a lot of plastic surgeons are cash only.) we finally found one in the area and we set up an appointment for the next day or the day after.
(While writing this story thus far and giving everything a bit more thought, I begin to fully understand the lengths to which people have gone to help me. What I mean to my family and to my doctors. Not that there was a question as to whether or not my family cared, but my doctors so far in the story and the ones you will read about soon enough. I have come to realize how much almost all of them truly care about me. My ongoing struggle against this constant pain, which has so often felt like a solitary journey, has not been undertaken alone. I have had numerous doctors working together to help me, trying their hardest and even working overtime trying to figure out what is wrong with my body, searching for the cause of my pain. Family members and friends who, even though most can't empathize they can sympathize and offer support which is of course, very helpful. I guess what I am really trying to say is, Thank you. Every last effort made by my Doctors and from those in my personal life has been greatly appreciated and has not gone unnoticed.)
When we saw the plastic surgeon it was a really weird experience, especially in the waiting room.
There was this one lady that kept staring at me the whole time which was really kind of creepy. And there was another woman who sat right next to me and kept talking to my mom and I about all her different plastic surgeries and how she was there that day for a consultation with Dr. Gatti to get her breasts redone. I did not want to know about her personal life!!! I was being polite and listening to her but I did not want to know!
Once in the consultation room I told Dr. Gatti (The plastic surgeon)
my history and showed him my wrist. Imagine my disappointment when all he said was "there's nothing I can do."
(I was really hoping that maybe he could do something to end this! Maybe not the pain, because that seems like it will never stop but I thought surely there was something he could do for the skin!)
He said that the wound is just superficial so I should just keep a dry dressing on it and be careful with it and eventually it should heal on it's own.
(My body never "heals on it's own" .. It just doesn't happen!)
My mom and I both pointed out that yes it is superficial, for the moment! It won't stay like that for long, it never does. There's always SOMETHING that happens whether it gets stuck to a dressing, or rubs on the dressing, some how some way, it never stays superficial! I really wish it did but it just doesn't!
So we left there unsatisfied and unconvinced but there wasn't anything we could do about it except hope that he is right.
That night when I went to change the dressing on the wound that doctor Gatti had put on it opened up even more and it got really deep and started bleeding A LOT.
(Dr. Gatti had put a piece of gauze on the wound instead of a nonstick dressing so my flesh got stuck to the mesh of the gauze and came off like it was a scab when I removed the dressing. At the pain and the sight of all the blood and the way the wound looked I yelled for my mom to come to my room where I was.
My wrist was actively bleeding and I didn't understand why! I have had injuries like this before in that same spot & I've never had this much bleeding! There was literally a river of blood flowing out of my wrist. A large pool had already formed on the sterile pad I had laid out on my dresser for the dressing change and has soaked through the large stack of gauze I instinctively covered the wound with at the first sight of blood. I started with a few pieces of course but by the time my mom walked in my room ( a matter of about a minute or two) the stack of gauze was at least 3 or 4 inches tall and steadily being soaked through.
My mom didn't need to see the wound, the fact that my room and my body were both covered in blood was enough for her to see the severity of the situation at hand. But I took the gauze off anyway, both to show her and to place a piece of adaptic (a nonstick mesh dressing) on the wound so that the gauze won't stick.
She immediately got on the phone with one of Dr. Ragland's partners telling him what is going on. Once she finished talking to him she came back to my room to tell me what he said.
Dr. Berkowitz (Remember him? The guy with the sugar? I do.) was the doctor that was on call that night. He gave us two options, he said I can either wait it out through the night and see Dr. Ragland first thing in the morning, or I can go straight to the emergency room. (as everyone knows, I avoid the emergency room like it's the plague. So obviously I chose to wait and see Dr. Ragland the next morning in his office.)
(It's Wednesday)~
The next morning I got up
(notice I said "got up" not "woke up", that's because I didn't sleep. I was up all night replacing the gauze & trying to control the blood.) and I saw that my room now looked like a crime scene. There was blood EVERYWHERE! All over me, all over my clothes, my sheets,blanket,pillow,floor, and dresser. It really did look quite gruesome. It also smelled strongly of blood. (Up until then I had no idea what blood smelled like, I had never been in a situation where I was around enough of it to smell it. But now I have become quite acquainted with the scent which in my opinion strongly resembles that of copper. It's not pleasant.)
Once out of bed I assessed the condition of the bandage on my arm. (you would have thought that between applying as much pressure as I could tolerate to the wound and holding my arm Above my head all night long I might have done something to slow the constant flow of blood but it appeared as though I had not.)
I began removing layers of gauze to replace them with fresh, new ones when I realized that the bottom layer (which I of course left on throughout the night so I didn't damage any blood clots that may have formed.) had become dry around all of its edges but was still moist with fresh blood in the center.
It. Was. Gross!
For some reason I thought it would be a good idea to change that bottom layer as long as I did it quickly and gently. (This proved to be a horrible idea)
I laid out all the necessary supplies in the order in which I would need to apply them. But when I removed the last layer of gauze the wound opened more and the bleeding increased accordingly. I immediately started stacking layers upon layers of gauze, applying pressure and holding my arm above my head.
A couple minutes later it was time to go to see Dr. Ragland. I used a full sized bath towel along with the thick dressing I already had on my arm to try and soak up the blood during the car ride. I had to keep doubling the towel over and over again because it kept getting soaked.
Once at the office I was taken back to an exam room immediately (I'm pretty sure other patients would get kinda scared seeing a girl crying in pain and holding a blood soaked towel on her arm in their hand surgeon's waiting room)
Within a couple minutes Dr. Ragland was in the room. (I actually did not expect that because I really technically wasn't on the schedule.) He was obviously a bit disturbed by the sight of me crying, pale as a ghost, weak and bleeding through a dressing that was at least 5'' thick plus a full sized towel. (I know I would have been!)
My mom gave him the update of everything that had happened since my last visit (The plastic surgeon phone tree visit) as he removed the blood covered towel and dressing. Meanwhile I am crying because it is extremely painful to have anything touch my arm, so this is not easy. (He of course knows this so he is gentle but it doesn't really matter how gently you touch my arm, the slightest touch still feels like a stab from a dagger. There is no known rhyme or reason as to why I am always in so much pain it's just my mystery pain according to Dr. Ragland.)
When he gets down to the wound after removing countless layers of gauze, to my complete shock the bleeding had stopped!!! I could not believe it! But before I have time to celebrate, I see why.
There was a blood clot that was just barely over the spot that was the main source of the bleeding. It was clearly a ticking time bomb. Any movement by either me or by Dr. Ragland would move that clot and his ocean blue scrubs would in no time become a crimson red. Knowing this, he very carefully and slowly cleaned the dried blood that had covered my arm from fingertip to elbow as best as he could and then formulated a plan.
Plan A.
He put a pressure dressing on my arm and said "if it bleeds through this, I'll be surprised and there's not much that surprises me with your case." he also got on the phone with Dr. Gatti demanding that I go into surgery that Friday. and with that, we went home.
Within the first 5 minutes of being home which consisted of getting out of the car taking my shoes off and heading up to my room to go back to bed, (losing that much blood evidently makes you really tired!) my wrist had bled through the pressure dressing and my mom was on the phone with Dr. Ragland.
Plan B.
Go to the emergency room.
The last time I was at Virtua Voorhees I was taken directly from the ambulance to my room. A "direct admit" so this was my first time in the pediatric ER.
Within minutes after we arrived I was taken back, triaged, and in a bed. (* highlight of my day!!! ~ I knew my nurse from church! I absolutely love her! I was so grateful to have someone we knew there taking care of me not only for my sake but also for my mom's, it had to have been nice for her to have someone there she knew and someone who shares our same beliefs taking care of me. It's just such a relief to have someone you know with you in such an unfamiliar place. It was by chance that I had her because she was just switched from the adult ER to the Peds. ER right before I arrived!)
After telling them the whole story of everything with my wrist they removed the dressing and started cleaning up the blood on my arm. When they uncovered the wound It was again no longer bleeding! (how embarrassing!) but just as before, with Dr. Ragland, I called attention to the precariously perched clot and they agreed that it could come loose at any moment so they just let my arm rest on the tray table to dry off while they discussed treatment options.
While they were talking I decided that I didn't like the idea of having my arm exposed like it was because I didn't want another infection. So I asked my ER doctor if I could take a piece of gauze that was sitting beside me just to place on top of the wound so it wouldn't be completely exposed and he agreed it would be a good idea to cover it a bit so I put the gauze on top of the wound and returned to the conversation my mom and I were having with my doctor. After a couple minutes though my doctor's expression changed from content to shock when he saw the blood coming from my arm and he stopped the conversation we were having mid sentence to call in the rest of the team & take care of my arm & clean up the messy puddle it had made on the table it was resting on ( I find it ironic that he noticed the bleeding before I did..?)
They applied a pressure dressing and had me hold my arm above my heart to try and control the bleeding while they switched up their game plan which, up until that point was to send me home and proceed with the surgery by Dr. Gatti that Friday. But now there was talk about a possible transfer to a different hospital.
In a matter of minutes my wrist had bled through that first pressure dressing. With the next one they added something called "Surgicell" it's supposed to either stop or slow bleeding by helping to produce clots.
It lasted about 5 minutes.
(The team of doctors and nurses working on me are getting frustrated and I was exhausted and weak from lack of sleep and lack of blood so I attempted to rest seeing as though there is nothing for me to do because the doctors and my mom are the ones calling the shots right now.)
My main doctor (who's name is Dr. Belfer.) has decided that I need to be emergency transferred by ambulance to The Children's Hospital of Philadelphia NOW! They had already started an IV for fluids and they finally got me some pain medicine but even though the Dilaudid helps numb some of the pain from the skin being open my arm still hurts & feels like it's on fire. But that is nothing new.
The next thing they try is another pressure dressing, this time with double the Surgicell and some epinephrine. This, to my surprise lasted about 10-15 minutes before it was completely soaked through. By then the ambulance had arrived and the EMT's and doctors were prepping me for transport. Right before I leave they change the dressing and quickly give me another syringe of pain medicine right before I go to try and hold me over through the ride to the hospital in Philly. My doctors & nurses all said their goodbyes and I was loaded into the ambulance and on my way to CHOP.
The EMT's were really nice.
One of them who's name I still somehow remember, Chris, made it his mission to make me laugh at least once before we got to CHOP because I was crying from the pain. He succeeded in his mission. :)
When we got to the hospital I was wheeled in on a gurney into a room in the ER. My mom, who the EMT's kept reassuring me was behind us the whole time in the car found me in a few minutes after she went to park the car. (I'm so glad she's here, I'm tired, in a lot of pain, scared, I'm really hungry, & I really hate the color red now. Not that I didn't already. I'm partially color blind with reds and greens but the color of blood is sadly one of the few shades of red that I can see.)
I'm greeted with a team of nurses and residents (I'm in a bit of a bad mood so I tell them to get everyone involved with my case in the room for me to tell the story because I'm not going to tell it more than once!.. Again I know that was probably really rude but I really don't care.) So they actually did. There was everyone except my actual doctor in the room to hear the story. (CHOP is a teaching hospital) I kept hearing things about my surgeon from all of the residents like "Doctor Chang is an amazing surgeon! Your in great hands!" and "Don't worry, Dr. Chang is number one in the country, your in great hands! He's even been on Oprah!" but I had yet to actually meet him. To be completely honest, I don't think I actually remember the first time I met him at all. I don't think he introduced himself, I'm pretty sure he just went straight to work. (Not that it really matters.)
I don't remember who did it but someone took off the dressing for everyone to look at the wound. This time though, it was bleeding everywhere, even worse than before! So they all sprang into action to stop the flow of blood and I had a nurse hook my IV up again to more fluids & they finally gave me more pain meds. They put a dressing on that was just like the ones that I was putting on at home. Then everyone left the room for a couple minutes. During those few minutes that they were gone I had my arm resting on my chest above heart level & I was talking to my mom about something when she said that I was getting blood all over my shirt.
The blood had soaked through the bandage on almost all sides.
She went out the door to get a nurse and/or a doctor. While she was at the door I sat up and I was cupping my right hand with my left because the blood had soaked through the dressing so much that it was now dripping through.
The blood had soaked through the bandage on almost all sides.
She went out the door to get a nurse and/or a doctor. While she was at the door I sat up and I was cupping my right hand with my left because the blood had soaked through the dressing so much that it was now dripping through.
Within seconds my left hand is overflowing with blood and it is spilling over onto me and the bed I'm on.
Just then, a bunch of people including my mom come into the room and they automatically go straight to work. Some on soaking up the blood that now fills my left hand, some on calming me down, and one (who actually now that I think about it might have been Dr. Chang...) removed the bulky, saturated dressing. He looked at the wound and applied a bunch of gauze and (In my opinion, too much,) pressure while holding my arm above my head. As he did this another person wrapped a gauze dressing around what he was already pressing on.
While all this was going on I was asking questions like "Do I have to have another surgery?", "am I going to be admitted?", "Am I going to need a blood transfusion?" these questions were directed at pretty much who ever was listening and the answers I got were "Yes, surgery as soon as there's another OR available" and "We can't say for sure but most likely" about getting admitted and about my needing a blood transfusion.. (Great. Just what I wanted, another surgery, a blood transfusion, and a hospital stay!.. NOT!)
After they applied that dressing I was on the phone with people trying to get someone who was able to come and give me a blessing before I went into surgery. I did. They came, gave me a blessing, left, and I was taken up to surgery. Once I was in PreOp things went by really fast. The anesthesiologist came in, introduced himself told me what was going to happen, and asked me if I had any questions, & I said "yeah, why do you have a Yankees hat on?" he laughed and said because he was born in NY. (I don't think that's a good excuse.)
I told him and the resident that was in the room my story while we were waiting (But only because they were really nice! I don't really want to tell it anymore! I think my mom told Dr. Chang so I didn't have to!) & After hearing my story, the resident asked my mom specifically if he could be in the OR for my surgery and she let him. :)
I told him and the resident that was in the room my story while we were waiting (But only because they were really nice! I don't really want to tell it anymore! I think my mom told Dr. Chang so I didn't have to!) & After hearing my story, the resident asked my mom specifically if he could be in the OR for my surgery and she let him. :)
After that the anesthesiologist asked me if I wanted a sedative before I went back. (I found this to be pretty funny because he asked me if I wanted a drug that was going to make me unable to remember pretty much anything that happens from right after I take it until I wake up, like he was asking me if I wanted apple juice! He was just so nonchalant about it.) I said yes. They gave me the sedative (I think it was a pill but I'm not sure.) and then I said goodbye to my mom before they wheeled me back into the OR. (I remember being really weak and getting increasingly tired as we made our way back to the operating room. I think the combination of blood loss mixed with the dilaudid coursing through my veins and lack of sleep was probably to blame for that.) Once in the OR I am starting to feel the effects of the sedative that I just took.(I still can't quite understand why they gave me a sedative in PreOp and then gave me whatever anesthesia they gave me through my IV in the operating room before they put my breathing tube in and started the surgery...) I remember trying to sit up to look around the OR I was lifted off of the gurney I was on and placed on the operating table. I watched as they prepared my arm, and secured the straps that hold me down on the table. I am entering a bit of a foggy twilight Feeling when I heard the anesthesiologist tell me to calm down because he can see that I am starting to panic. He told me to relax as he injects the anesthesia meds. I feel the liquid from the syringe enter my veins and within about 10 seconds I am asleep.
(It's Thursday)
The next thing I remember is waking up the next morning really early, in tears because of the pain. I remember seeing who I'm pretty sure is Dr. Chang and a couple of the people that always follow him around in the doorway. I could barely see him because my vision was so blurry from the tears and from just waking up from the anesthesia (Not to mention the fact that he was standing in the doorway to the bright hallway and I was in the dark room so it was pretty much like looking into the sun when I looked in his direction. So I closed my eyes.)
If he said anything to me, I don't remember it.
Then I remember what had to have been less than 2 or 3 minutes later my nurse came in because I was screaming and crying in pain. (This. Pain. Was. Horrible!!) I was also upset because when I looked around for my mom, she wasn't there and I didn't know why. My nurse Told me my mom said she would be back soon & that she left to go home so my dad could go to work because my sisters were home.(Now I remember my mom telling me about that..)
She also told me my surgery was a success & what happened during it. (Dr. Chang found and repaired a damaged vein. That explains all the blood! Thank goodness he fixed it, my nurse said I was really close to having a transfusion. She also told me that Dr. Chang removed the area of skin that kept ripping. Thank you Dr. Chang!) Then she gave me more pain medicine & I went back to sleep.
She also told me my surgery was a success & what happened during it. (Dr. Chang found and repaired a damaged vein. That explains all the blood! Thank goodness he fixed it, my nurse said I was really close to having a transfusion. She also told me that Dr. Chang removed the area of skin that kept ripping. Thank you Dr. Chang!) Then she gave me more pain medicine & I went back to sleep.
The next time I wake up my mom is there! But I am also in A LOT of pain! And I'm really hungry. So my nurse comes in and gives me more pain meds after she makes me get up to go to the bathroom. (I didn't actually go to the bathroom. Instead I looked in the mirror for about 5 minutes. I was as pale as a ghost because of the lack of blood. There were tape marks across my cheek from the breathing tube that I had during the surgery. My eyes are bloodshot from crying and there are bags under them. I certainly look the part of a hospital patient, drugged out on pain meds, pale, and weak. I am using the sink to hold myself up while I look at my reflection because I feel like I am going to collapse if I stand on my own.) The pain in my arm is so bad I wish Dr. Chang could have just amputated it. I can't bear to be out of bed any longer so I splash my face with some cold water, and I walk back to bed using my IV pole as support as I walk. When I get back in bed my nurse is there waiting to give me more meds. Once she administers them she leaves and I go back to sleep.
(They really aren't working too well for the pain but I'm afraid to ask for anything stronger because I don't want them to think that I'm not really in as much pain as I am & I just want the drugs because that is absolutely not the case. I actually really don't like taking narcotics at all. I don't like the way they make me feel. So I just deal with the pain the best I can. For now.) Later that day when I wake up and the adhesive on my face from the tape is gone and I smell like oranges. (I find out later that was because my nurse used a special kind of wipe that removes tape lines on my face while I was sleeping.)
I had a "Child life Specialist" come in and tell me about a radio station that Ryan Seacrest had set up in the main lobby of the hospital called "The Voice" & she told me that Hot Chelle Rae was going to be there to visit the kids and that if I was feeling up to it I could go down and meet them! I almost told her no because it sounded too good to be true and because I was in a lot of pain and I was feeling really weak, but instead I asked my nurse if I could and when she said yes, I said yes so I got another dose of pain medicine right before and my mom wheeled me down to the radio station in a wheelchair and I really got to meet Hot Chelle Rae! They were all so nice! I got pictures and an autographed poster that now hangs on my bedroom wall from them! (I was even complemented on my hair by Nash Overstreet! That was very nice of him especially because I thought I looked like a mess that day!)
(They really aren't working too well for the pain but I'm afraid to ask for anything stronger because I don't want them to think that I'm not really in as much pain as I am & I just want the drugs because that is absolutely not the case. I actually really don't like taking narcotics at all. I don't like the way they make me feel. So I just deal with the pain the best I can. For now.) Later that day when I wake up and the adhesive on my face from the tape is gone and I smell like oranges. (I find out later that was because my nurse used a special kind of wipe that removes tape lines on my face while I was sleeping.)
I had a "Child life Specialist" come in and tell me about a radio station that Ryan Seacrest had set up in the main lobby of the hospital called "The Voice" & she told me that Hot Chelle Rae was going to be there to visit the kids and that if I was feeling up to it I could go down and meet them! I almost told her no because it sounded too good to be true and because I was in a lot of pain and I was feeling really weak, but instead I asked my nurse if I could and when she said yes, I said yes so I got another dose of pain medicine right before and my mom wheeled me down to the radio station in a wheelchair and I really got to meet Hot Chelle Rae! They were all so nice! I got pictures and an autographed poster that now hangs on my bedroom wall from them! (I was even complemented on my hair by Nash Overstreet! That was very nice of him especially because I thought I looked like a mess that day!)
But before I got to meet them I watched them perform and be interviewed by the radio station staff and the kids in the room and it didn't take long for me to be ready to go back up to my room because the pain was beginning to be too much for me to handle. Some of the radio station volunteers saw that I was crying and that I was clearly in a lot of pain and they wheeled me over to the table they were going to be signing autographs and taking pictures so that I was first in line so I could leave as soon as possible. (I really appreciated that. The volunteer who did that for me, I found out later that his name is Justin. Thank you Justin.)
Back up to my room for more medicine and more rest.
Apparently, I was supposed to have gone home that day and then return later on in the week in the clinic to see Dr. Chang & to get a cast put on.
That's not what happened though.
Instead of going home, that day was spent screaming and crying. The doctors decided I was not going home any time soon if I was in that much pain.
Later on in the evening after my mom went home, I was awake and able to get out of bed long enough to sit on my windowsill and watch the people walking around university city, wishing that I was amongst them. I watch as a woman dashes out of a building across the street and gets into a cab. But not before she gets soaking wet from the rain, and steps in a puddle. I count the number of black umbrellas in comparison to the amount of other colors. Watching people interact with one another. It's interesting to see how different some of their reactions are to what's going on around them. Some don't seem to notice the rain much less mind it. Others obviously hate it. But at least they are healthy enough to be out in it.
As I look down from my room, I wonder about these people; I think about their lives and wonder what they're like. Some wear scrubs so they are obviously either healthcare professionals of some sort, or they're going to be. But then there are also people in regular clothes. What brings them to this part of the city? Are they parents of a sick child? If they are will their child be ok? I hope they will be. You don't know what you've got until it's gone. Evidently, good health is not an exception to that. I am so tired of being in the hospital and of being in pain that I'd give anything to be able to live life like a normal person again. It's been so long since I have walked around outside besides getting in and out of the car to go to doctors appointments and to the hospital. Watching these people is distracting me from the pain but making me depressed so I wheel my IV pump back to my bedside and go back to bed for the night.
That was a rough night.
As I look down from my room, I wonder about these people; I think about their lives and wonder what they're like. Some wear scrubs so they are obviously either healthcare professionals of some sort, or they're going to be. But then there are also people in regular clothes. What brings them to this part of the city? Are they parents of a sick child? If they are will their child be ok? I hope they will be. You don't know what you've got until it's gone. Evidently, good health is not an exception to that. I am so tired of being in the hospital and of being in pain that I'd give anything to be able to live life like a normal person again. It's been so long since I have walked around outside besides getting in and out of the car to go to doctors appointments and to the hospital. Watching these people is distracting me from the pain but making me depressed so I wheel my IV pump back to my bedside and go back to bed for the night.
That was a rough night.
(It's Friday)
The next morning bright and early again Dr. Chang and his entourage appear at the door for rounds.(I have no idea if words were exchanged and I'm starting to think maybe he is really just making sure I'm still breathing. I could be wrong though. Narcotics mess with your memory & frame of mind.)
More crying, More meds, More sleep.
Later that day when I wake up I am of course in a lot of pain and my mom has just arrived. I was told that I am going to be receiving a visit from "The Pain Team" today.
"The Pain Team", if I remember correctly consisted of Dr. Kraemer (who is now my pain management specialist who I see regularly. He's an ok guy. I don't like some of the things he things he says and no matter how many kids he sees like me, I still don't think he understands my pain. But he gave me what so many doctors before him could not and that is, a diagnosis. For that, I am forever in his debt. I know that probably didn't make much sense but you'll understand soon enough!)
And he had a couple interns & I think maybe a resident or two with him.
Dr. Kraemer asked me a few questions after introducing himself and then told me he thinks that I have a rare disease called "Complex Regional Pain Syndrome"
(I had no idea what he was talking about but if he just finally figured out what was wrong with me and why I'm in so much pain all the time, he just became my favorite person in the entire hospital, possibly in the entire world.)
He told me a little bit about the disease and then I think he asked me more questions and when I told him that the pain meds weren't really helping me he didn't seem surprised at all much less suspicious and then he adjusted them so that I got a higher dose of dilaudid and he added Valium. (I remain unconvinced that anything is going to help but it appears I have nothing to lose so I agree with the new medication plan.)
I am very tired and in a lot of pain when he leaves so I call for my nurse almost immediately. She comes with both the Dilaudid and the Valium (that was fast,? He literally just walked out of my room..??)
The combination of the two medicines knocks me out for a while.
When I wake up I am of course in a lot of pain so I am given more medicine through my IV and I order some food because I am starving! Luckily they took me off of NPO because the day after my surgery I was really hungry but when I called to order food the cafeteria people said I am still marked as not allowed to have food because of the surgery! (I was so mad!)
After I eat I ask my mom if she can take me down to "The Voice" (I am tired of being in bed and that radio station looked really cool, I couldn't believe it was really there specifically for us patients!) She said yes so after I ate we went down to check it out.
When we got to the station we were let inside by Justin. I introduced myself to everyone in the room and they did the same. I was wheeled up to the table that had all of the mics and headphones on it and the D.J. (Who's name is Phil.) asked me If they could interview me. I said yes and they really interviewed me as if I were some kind of celebrity! It was really cool and it even took my mind off the pain for a little while! But all good things must come to an end and after a little while no distraction could bring me from the intense pain In my arm. It was time to go back to the safety of my bed and have some more medicine. I'm too tired to do anything else today anyway.
(It's Saturday)
Early morning Rounds are the most annoying thing ever! I get hardly any sleep as it is! Every morning I am woken up by a flood of light from the hallway because he opens my door to come in and see me. When Dr. Chang and his friends leave I go back to sleep after I am given another dose of pain meds. (My nurses have been coming in every few hours to give me more while I sleep so I don't wake up screaming too many times through out the night.)
I am so glad to see that my mom is here with me this time because it is Saturday and she helps calm me down so I can go back to sleep.
Today is spent in pain and in bed.
(It's Sunday)
My mom leaves shortly after rounds to go back over the bridge to jersey for church.
I stay in bed, too tired, weak and in too much pain to do much of anything.
I post on Facebook that I NEED VISITORS!! (time spent in the hospital is like time spent in a five star jail. It's so boring but you can't do anything about it and you can't leave!) A man named Geoff from "The Voice" came to my room when my mom got back and asked me if he could interview me. I said yes so he set up his camera on a tripod and did a full interview about me, my life, my condition, etc. (I don't remember anything that was said by me during that interview but Geoff said it was really good so I took his word for it.)
The pain in my arm is getting worse, not better. I have the same burning feeling as I always do. My hand feels really swollen under the post surgical dressing that I have on and I can see my finger tips are now constantly the pinkish/purplish color with these white spots that used to come and go but are now there constantly. Dr. Kraemer says that is called mottled flesh. (That doesn't sound like a good thing..) My hand is ice cold despite the constant burning feeling and if anyone dares to touch my hand/wrist, I will scream. later that day Dr. Chang came in and removed the dressing on my arm to look at the area he operated on to check for infection and to make sure it
Is healing properly (This was extremely painful!) he said it looked good (Which it did! I must admit, he is a gifted plastic surgeon. The scar was perfect! He is even better than everyone says he is.) & then he replaced the dressing.
The next few days in the hospital are a blur. They were trying to get me ready to go home which I was totally on board with until I found out that meant taking me off of IV pain meds and switching me to oral. It didn't take long for me to be back on the IV though. Oral pain meds take time to start working. Apparently pain waits for no pill though!
That day (It's Monday...I think.) I went back to the radio station because my child life specialist (I think her name is Rachel..) told me that Tinie Tempah was going to be there today and this time I could go in and be one of the people interviewing him! I got permission to go and I got some pain medicine right before I went.
Once downstairs I was wheeled into the radio station and I was sitting on the side because there weren't any more chairs available except the one that was being saved for Tinie Tempah & I was in a wheelchair anyway. But when the radio station staff saw me sitting over in the corner they told me to come up to the table where the mic's were after asking the girl sitting closest to the end If she would mind if I was wheeled over to sit next to her and she said yes. (I think her name was Sarah, and even if it wasn't, it is now for the purposes of telling this story. Thank you Sarah.)
I was seated next to Sarah and we had a brief conversation which included introductions.
Tinie Tempah walked in the door and sat in the chair right next to me. I said hello, introduced myself, asked him how he is doing, etc.
After our conversation we got started with the interview which was conducted for the most part by me.
I had not intended on doing the interview but I had never been in a situation like this with a celebrity and I didn't know if an opportunity like this was going to come again so I wanted to ask whatever questions I had while I could.
Evidently I had a lot of questions but the other kids didn't so I ended up running the interview. I kept checking the facial expressions of the staff & other patients to make sure no one was upset that I was asking so many questions. (I didn't want to steal anyone's opportunity to ask a question.) but I saw nothing but encouragement and perhaps a bit of fascination that I was so comfortable with talking to him and with talking on the radio, in the faces of the staff and the patients seemed quite content with the idea of me doing all of the talking so I continued.
(Tinie Tempah is such a nice guy!)
Due to being under the influence of a fresh dose of Dilaudid, I have absolutely no Idea what was said during that interview but I do know that afterwards, I picked his sunglasses up off the table (sunglasses are his signature look)
He did not object so I put them on my face and turned around to face my mom who was behind me, and asked him to do the same. My mom took pictures of the two of us, some with me wearing his sunglasses, some with him wearing them. He then signed a poster for me and I was wheeled out after a quick hug goodbye.
As I was leaving the studio I was told I had a visitor! (aside from the pain this day keeps getting better and better!)
My visitor was our stake president! (A stake president is a church official assigned to a certain area on a map called a "stake" which is made up of like 13 different church buildings. He is a really good friend of mine and I wanted visitors really badly so seeing him was a highlight of my day. His name is President Corbitt.
Thank you President Corbitt.)
The three of us went upstairs to my room on the fourth floor. My nurse came in a few minutes later and gave me some oral pain medicine And said I can have the IV meds too if I need it. President Corbitt couldn't stay long. (He never can, he's a busy man. He's always got a meeting to attend in a half an hour, a flight to catch, an ambassador to meet. Etc. because he is also head of public and international affairs for my church. The time spent with him always goes by really quickly. Time flies when you're having fun!)
A couple hours later I am woken up and surprised to see two of my best friends Lana and Emily walk into my hospital room. (what a pleasant surprise!)
Lana brought me chocolate chip cookies that she and her mom had made and they stay for a little while. We talked, ate a couple of the cookies, and I never want them to leave!
After they leave Dr. Chang came in with one of the people that always follows him who he introduced as his "fellow". He tells me we are going to go to the cast room & I am going to walk there. (by this time, it has been hours since my last dose of pain meds and I am already crying when he walks in so I was screaming and crying the entire way over to the cast room which was on the other side of the hospital and down on the 2nd floor. No sympathy was shown by Dr. Chang. ...Shocker.)
Once in the cast room obviously the dressing was removed and a cast was put on. I was then taken back to my room & I was given pain meds.
(I'm pretty sure Dr. Chang isn't too fond of me. I honestly don't care at all though because I'm in too much pain to care about much of anything.)
That was a really, really hard night.
(It's Tuesday)
I'm going home today!
But not before I meet Keri Hilson!
I can't stay down stairs long because I am in too much pain. (The nurses said I could go down to meet her but I had to walk. Walking took a toll on my body & by the time I reached the lobby I was exhausted and in a lot of pain. I sat down and waited for the interview to be over so I could meet Keri and take pictures. I was sitting on one of the benches outside the studio with my mom alongside the line to get pictures and autographs when the pain in my arm became absolutely unbearable and I started to cry. Justin saw me and asked my mom if I was ok and she told him I was really hurting so he told us to follow him & he took us up to the front of the line and explained to the people in line what was going on. No one in the line objected to me getting in front of them so I wiped my tears, took pictures with Keri and talked to her briefly because she asked me if I was ok and gave me a hug.
(I would like to thank all of the Celebrities that I met while I was at CHOP for coming to visit us patients, I would also like to thank The Ryan Seacrest Foundation for making all of that possible!)
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| I went back to visit after one of my follow up appointments and i got to be the D.J.! |
I don't remember leaving the hospital, or the following week at all because I came home and slept for a really long time. The next thing I remember was going back to see Dr. Chang in the "wood center" for a follow up appointment and the skin over incision was a little torn possibly from rubbing on the dressing or cast or something. (I don't remember.) so he put some "Steri Strips" over the area to help it heal. (Thank goodness no more surgery or anything! Just a few Steri Strips! I'll have to be really careful with this skin. I really want this all to be over!)
He recasts my arm & sent us home.
A few days after that it's Sunday and we are on our way home from church. I am in the passenger seat and have my hand resting in my lap and I'm having a conversation with my mom who is driving the car. We went over a speed bump and as we did I felt a sharp pain/pop in my wrist but I don't see or feel any blood under the cast at the moment so I think nothing of it because weird things like that happen to my hand all the time. Later on though after we got home I noticed some dried blood on my knuckles that are just outside of the cast. I immediately show my mom and the next day or so we are back at CHOP seeing Dr. Chang in the wood center.
I am sent to the cast room to have the cast removed so that he can see if there is any cause for concern.
 |
| OUCH! |
To my surprise, Dr. Chang himself is the one who comes into the room to remove my cast instead of one of the techs.
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| Pain is weakness leaving the body. - U.S. Marine Corps. |
He removes the cast and immediately asks me if I shoved anything down my cast. I of course tell him absolutely not (which is the absolute truth. I know better than to put anything in casts because it can break the skin and then you can get a really bad infection.) but he did not believe me because there was what looked like a puncture wound on my hand that wasn't part of the initial incision so he told my mom there was no possible way for this type of wound to have occurred without me putting something inside the cast. (I completely understand why he would think that. If I were in his position, I would think the same exact thing but the fact still remains that I did not put anything in my cast & I don't care if he believes me or not.)
He just put a band aid over the new wound and recasted my arm but this time he put the cast over my fingers so that even if I wanted to, I couldn't put anything down my cast. ...Jerk.)
The next few times I saw him he just took the cast off looked at it and casted it again.
When he felt I was no longer in need of a cast he switched me to an ace bandage and a splint. (it really hurt to no longer have the support of the cast. I kinda wanted to have the cast back on, despite how much I absolutely loathe them.)
The same day that he took me out of the cast I accidentally gave him a reason to put me back in one (It really was an accident. I promise. But he of course thought I did it on purpose. ..What a shock.)
The night I got my cast off I went home and took a shower and was able to have my arm in the water for the first time in a long time thanks to Dr. Chang.(This was bittersweet because although I was happy to no longer be in a cast, every single water drop feels like a razor blade!)But that night after my shower I put the ace bandage on in a hurry because I had to leave to go to seminary. In my rush I put the spikes on the clip that holds the bandage on my arm right over the incision & I didn't put enough layers of bandage over that spot so the clip dug into the skin, opening it again. (I just can't win.)
When we went to see Dr. Chang, both my mom and my dad were with me. We saw him in the plastic surgery office instead of the orthopedic office like I usually do.
He unwrapped the ace bandage and the dry dressing that I put on and said "ok you failed with the ace bandage." (I didn't know it was a test..) He then asked my dad to take me up to the cast room while he talked to my mom. (This man is about as subtle as a gun, I knew exactly what he was thinking and what he was going to say to my mom and there was no way for me to defend myself. I knew he thought I was purposely reopening the wound. Again, if the tables were turned I would probably think the same thing. But he really couldn't be more wrong which I found pretty funny so I was mad at the false accusation that he didn't even verbalize in front of me but I still had to try not to laugh at him.)
My dad and I walked upstairs to the cast room and then back down to where my mom was. (You could have cut the tension with a knife and The white elephant in the room was so big it was making me claustrophobic. By the look on my moms face I knew I was right. But I also knew in that situation, it was best for me to be silent.) It took me a few weeks for her to actually tell me what he said. (I was right.)
I wish, more often than not that I could give some people (Dr. Chang especially.) my pain. For at least ten minutes, then maybe they (he) might begin to understand what I go through every second, of every single day. Maybe then he might see how preposterous his accusations were. Perhaps then he might realize that the idea of me touching my arm at all is actually a scary thought and that doing anything to hurt it would be so painful I would probably pass out.)
The following weeks fly by with no problems (aside from the pain.)
Until I find myself in the emergency room at CHOP.
I was sitting at the computer doing a project for school when I felt a sharp twinge of pain on my arm near my elbow just below the cast. This pain was so random that I flipped my wrist over apparently with enough force & speed to make my wrist get stuck in a position that I never thought possible. (hold your arm palm up, and turn it so that your elbow faces in and your palm faces out. That's how my arm was stuck. It felt like something popped and now my ulna was out of its rightful place and pushed inside my wrist, stuck there. It really hurt!) so we went back to go see Dr. Chang but he was unavailable so we were supposed to see someone else but the people in the cast room were so perplexed by what they saw with my wrist that they called Dr. Chang and asked what they should do. They were apparently told to remove the cast and send me to the emergency room. OUCH!) once in the ER I was taken back for X-rays which I later found out, showed nothing. But they gave me pain medicine (which of course didn't help.) and some annoying Ortho resident that works with Dr. Chang looked at my arm, called Dr. Chang and put a new cast on my arm after he did the best he could to straighten it and then I went home.
That night,I did my best to try and work through the pain and straighten out my arm the rest of the way and I did! Until I woke up the next morning & it was back the way it was.
When I went back to see Dr. Chang I was sitting In the cast room (already in pain.) and doctor Chang walked in the door and said "Megan, don't hold your arm like that." and then he grabbed my arm and flipped it over, back into its place. (while I was glad he was able to get it back in place, I was mad that he is once again accusing me of something I DID NOT DO! This very moment, is the end of me trusting any and all doctors. I blame him.) I was in a world of pain so as soon as he did that, I screamed. (I must have looked pretty Ridiculous screaming and crying like I was but the pain was so extreme that I just didn't care.) He then told the cast room tech (Who's name is Liz, she's my favorite.) to put on another cast but this time from finger tip to shoulder. But he wasn't done! He proceeded to tell me that I need psychiatric help because there is nothing wrong with my arm.
(Doctor Benjamin Chang went to one of the best med schools in the country. It sure shows in his surgical outcomes. But Judging by my past experiences with him, I am fairly certain that he was absent the day they taught bedside manner.)
After I got that cast off I didn't have any more problems with the skin (Because I've been treating it as if it's a bomb and the slightest touch will set it off. Although with the pain that comes with touching it, it may as well be.) or with my arm getting turned the wrong way because I really haven't moved my entire right arm since that day it got turned around.
The day before the visit with Dr. Chang where he separated us to voice his opinions about me to my mom privately, I saw Dr. Kraemer for the first time in his office.
We were there for FOUR HOURS!
First we had to wait FOREVER just for Dr. Kraemer to come in and see me and we talked for a while but then we had to wait for a psych evaluation which apparently every new patient has to go through. (I absolutely HATE psychologists so much! I hate that they try and get in my head so I avoid them at all costs!)
We waited at least an hour in an exam room for Dr. Kraemer to come in to see me when they said he would only be a few minutes. (lies.)
He came in after about 45 minutes, did a brief examination and then asked me loads and loads of questions about my arm & about the pain. I had to tell him the story of all of the surgeries again from start to finish (just the gist of what I've already written here.) and then he told us the pain psychologist would be in to see me in about 10 minutes.
(We waited an hour and a half and I was ready to just leave. I didn't want to talk to them anyway.)
They came in and asked a bunch of ridiculous questions about my life, my pain, family, stress, etc. and then they asked my mom to leave the room (which I was against!) and then they asked me half of their stupid questions again! (I was so mad! I understand that some kids might answer differently if their parents are in the room but not me. The answer is still no, I don't do drugs. So stop asking.)
Once they were finished they brought my mom and Dr. Kraemer back in the room and we discussed treatment options.
The disease that Dr. Kraemer diagnosed me with has a few different names.
CRPS - Complex Regional Pain Syndrome
RND- Reflex Neurovascular Dystrophy
RSD- Reflex Sympathetic Dystrophy (Which I also call RSD- Really Stupid Disease!)
But they all mean the same thing.
Dr. Kraemer explained to me that Having RND means that I feel pain 10 times more than a normal person because my nerves don't work properly. My pain is ranked higher than that of a cancer patient and it can get from bad to worse in a matter of seconds. The Pain in my arm is like no other pain I have ever experienced. My arm feels like it is Constantly on fire but it is cold to the touch, any slight movement, touch, or change in temperature sets off a reaction of intense pain in my arm.
My wrist and hand change colors, sometimes it looks normal, other times my hand is red or purple with white dots all over it.
(Having RSD is not fun. Everyday is a constant battle to go throughout whatever normal actions and tasks that I can, anything from getting dressed in the morning to going through a full day of school, to try and act normal and seem happy. My job has become to hide the pain from my friends and family and that means doing my absolute best to keep from screaming and crying in pain every time someone bumps into me in the hallways at school or when my shirt brushes up against my skin when I get dressed in the morning. Despite my best efforts though, there have been numerous nights that I have been sobbing from within my mother's warm embrace asking her between sobs and screams from the pain the question that no one seemed to be able to answer. That question being, "Why can't I just be healthy?" I am broken, and no one knew why or how to fix me.)
Dr. Kraemer said that some of the forms of treatment he would like me to try would be
Psych counseling- To better handle the pain. (My response was "Absolutely not.".)
Anticonlvulsion medication which has been proven to help people with nerve pain- (I said maybe.)
Physical Therapy -(I looked at him like he had three heads when he made this suggestion because I thought there was no way that moving my arm that was already in excess amounts of pain was going to help me at all. He seemed confident in his suggestion though so I agreed to give it a try. )
Dr. Kraemer said that there is a physical and occupational therapy program at CHOP run by a Rheumatologist named Dr. Sherry that specializes in treating RND. He also said that this program would most likely be the best option for me because I could come out of it pain free and fully functional in a few weeks.(At this point, I am thinking SIGN ME UP! and I am about to ask why this hasn't been mentioned before and/or why have I not already started?!) But then he went on to talk about the program and he told me that it will be really hard and extremely painful and that my pain will most likely increase and spread a lot in the first few weeks. He also said that given how stubborn I am about everything, especially about doing a home PT and OT program, that this is going to very soon become my final and only option but I am going to have to wait a while before I start. (This suggestion sounded the most promising up until the part about my pain getting worse, it being hard, and I wasn't crazy about the idea of having to be put on a waiting list.) I was about to say no when he emphasized that this is my best bet and possibly my only option for completely beating RND. After a moment of silence that filled the room while I sat contemplating each suggestion, (I said I would attempt to go through Dr. Sherry's program.)
Dr. Kraemer said that there is a physical and occupational therapy program at CHOP run by a Rheumatologist named Dr. Sherry that specializes in treating RND. He also said that this program would most likely be the best option for me because I could come out of it pain free and fully functional in a few weeks.(At this point, I am thinking SIGN ME UP! and I am about to ask why this hasn't been mentioned before and/or why have I not already started?!) But then he went on to talk about the program and he told me that it will be really hard and extremely painful and that my pain will most likely increase and spread a lot in the first few weeks. He also said that given how stubborn I am about everything, especially about doing a home PT and OT program, that this is going to very soon become my final and only option but I am going to have to wait a while before I start. (This suggestion sounded the most promising up until the part about my pain getting worse, it being hard, and I wasn't crazy about the idea of having to be put on a waiting list.) I was about to say no when he emphasized that this is my best bet and possibly my only option for completely beating RND. After a moment of silence that filled the room while I sat contemplating each suggestion, (I said I would attempt to go through Dr. Sherry's program.)
We decided to try the nerve/seizure medicine, and to start occupational therapy at the CHOP specialty building in New Jersey which is closer to where I live.
I left his office with a prescription for a drug called Neurontin, and a prescription for Physical and occupational therapy.
My mom scheduled an appointment to go to the physical therapy part of the hospital so that they can give me a home program that I can pretty much guarantee I'm not going to do. I can't bring myself to do something that is going to make me have pain even worse than what I'm already feeling, in my own home. That's just not going to happen.
My mom scheduled an appointment to go to the physical therapy part of the hospital so that they can give me a home program that I can pretty much guarantee I'm not going to do. I can't bring myself to do something that is going to make me have pain even worse than what I'm already feeling, in my own home. That's just not going to happen.
She made appointments for once a week on Tuesday's at five p.m. with the OT in New Jersey who's name is keliegh, and an appointment with a Rheumatologist at CHOP. (I'm not sure who yet.)
I hate PT & OT!
A few weeks passed & they were filled with a lot of pain. I can't remember the last time I had a full night of sleep. & the pain has begun to spread up my right arm.The Neurontin didn't work at all. They may as well have given me water to treat my pain. Dr. Kraemer gave me a new prescription for a medicine called lyrica which is commonly used to treat fibromyalgia.
It didn't do anything but make the room spin and make me feel like I was moving in slow motion. Not even the slightest bit of relief from the pain. (I am getting really frustrated.)
The next appointment I have is with Dr. Sherry's partner Dr. Bernal. (At this point in the story it's November.)
Dr. Bernal, I must say, is most likely the nicest doctor I've met at this hospital so far & he is probably my favorite. (Dr. Kraemer is a close second which he earned by giving me a diagnosis and Dr. Ragland is high up on the list too. Perhaps even tied with Dr. Bernal because of all that he has done for me, and for putting up with me for close to two years. Which I know is not always an easy task for any amount of time, much less two years of his life filled with visits from me. I probably drove him completely mad at times.)
Dr. Bernal and Dr. Chang, in my opinion, are very opposite, because while Dr. Bernal is both a great doctor & has an amazing bedside manner, doctor Chang is a great surgeon who's skills are no doubt unparalleled in the operating room, but his arrogance and condescending cordiality make a good bedside manner a foreign concept.
However, even though he is really nice, I still do not trust him, or any other doctor for that matter. It's nothing personal, it's just that ever since seeing Doctor Chang, I trust no one with an M.D.
I do however, very much enjoy speaking with Dr. Bernal. I'm not sure why exactly, but I think perhaps it might be partly because I feel like he actually listens to me. He also speaks to me rather than at me, or down to me; which is what so many physicians before him have done. (For me, first impressions are very important. So if Dr. Bernal hadn't come in as calm as he was, sat across from me the whole time rather than next to me like he did, and drilled me with questions instead of just taking the time to hear my story; Then my opinion of him would probably be different. At this particular time in my life with everything going on, going from doctor to doctor, my horrible experiences with Dr. Chang fresh in my memory; I am extremely reluctant to trust any doctors much less be comfortable around any of them.
But Dr. Bernal seems to be a diamond in the rough in a way... The fact that he never treats me like a child certainly helps his case quite a bit also.) It may also have something to do with his personality. Which at this point throughout my experience with him, Can be summed up as calm and consolatory for the most part in my opinion.
(I don't know if I should ever let Dr. Bernal read this blog. If I do maybe I'll give him an edited version. Where I talk about him a little less. This part of the story may feed his ego quite a bit. He would probably make a joke out of it... He's kinda funny, but I don't think he's as funny as he thinks he is..)
But Dr. Bernal seems to be a diamond in the rough in a way... The fact that he never treats me like a child certainly helps his case quite a bit also.) It may also have something to do with his personality. Which at this point throughout my experience with him, Can be summed up as calm and consolatory for the most part in my opinion.
(I don't know if I should ever let Dr. Bernal read this blog. If I do maybe I'll give him an edited version. Where I talk about him a little less. This part of the story may feed his ego quite a bit. He would probably make a joke out of it... He's kinda funny, but I don't think he's as funny as he thinks he is..)
Other than those things, there isn't really anything that stands out to me as the reason why I feel like I can talk to him & possibly trust him someday. (I said POSSIBLY! I still stand by what I said about not trusting him or any other doctors.)
He did a Brief examination & I of course had to tell the story of all of my surgeries (The paraphrased version.) & after a bit more conversation he put hand sanitizer on my arm to see if I could touch my arm enough to wipe it off. (That may not seem like anything important to anyone else but it seemed like torture to me! I think perhaps that was Because I refused to let him touch my arm. Whatever the reason was, It hurt, & I hated every second of it.) He said that he thought it would be a good idea for me to join Dr. Sherry's RND program. But he said that although I will be on the list to get in, I will have to wait a while before I can start so I should continue with my outpatient OT program.
He also made me shake his hand as we were leaving! (Obviously, given the fact that his hand feels like sandpaper against my sensitive skin, and the fact that I get horrible sharp, stabbing pains in my hand and arm immediately when it is touched by anything, I did not want to shake his hand in the least bit!) I think that my reluctance gave him all the more reason to promise me a handshake everyday while I am in the RND program. (We'll see about that...)
I had to go back to CHOP that same day for an appointment with Dr. Chang. (I am hoping and praying this will be my last.)
There is a bit of time in between my appointments so my family and I go down to Penns landing and see some of the sights and sat down to eat at some lame 50's themed restaurant before we headed back to the hospital for round two.
Doctor Chang was actually kind of nice to me today!!! I am a bit cynical as always though. No one goes from being a total jerk to having a full & civilized conversation and saying "I'm proud of you" (Proud of me for what? For not messing with the skin on arm long enough to let it heal? That's obviously what you think I've been doing. Perhaps you think I've sought "help"? You really do wear your opinions on your sleeve. Not that you need to though, I can read you like an open book. The scornful undertones in your voice as you say your "proud" of me speak louder than the empty phrase that just rolled off of your tongue. I despise you Dr. Chang. You couldn't be more wrong about me but the fact that you are so convinced that you are right and that you view your own opinions as law is actually quite humorous. But even if I screamed from the rooftops you still would be convinced that I am mentally unstable wouldn't you? Despicable.)
But nonetheless, this was actually a pleasant visit. I didn't get discharged yet though. I have to see him this February (Feb 2012) and I will have to continue to play nice until then. The only thing keeping me from going off on him is the fact that if I did, my mom would be completely embarrassed. But if I am discharged and my mom exits the exam room before Dr. Chang and I do, I can't say I will have the restraint to hold back my comments that I have been holding back for months.
A few more weeks pass and the pain has spread & has taken over a large portion of my body and has continuously gotten worse. After a restless, scream filled night in December my mom called Dr. Kraemer asking what can be done, if anything for me when I am screaming from pain all night long from invisible pain that I now have all over my body. He of course told her that there is nothing that she can do but send me to school which she did. (I could not believe she did that!! I was up all night screaming and crying in pain and she sent me to school in the morning! And he backed her up on it! What is this nonsense?! I ended up sleeping through pretty much every single class anyway so I really didn't see the point in me going at all.) She was glad he backed her up on it though because she said she felt terrible about sending me. When she told him that the RND has now spread to my back and most of my right leg he said that if I don't start this program as soon as possible then the pain is going to continue to get worse and it will spread until I am in a wheelchair and then bedridden. (At this point, a wheelchair sounds heavenly. I am currently hopping/limping around everywhere I go and sliding down the stairs at home like a two year old because it is too painful for me to walk down them.) Dr. Kraemer said that he is going to call the people who deal with admissions to the program to stress the issue of me getting in because I am getting nothing but worse each day I wait.
A few more weeks pass.
Wednesday January 4th
I came home from school and my mom told me she just got off of the phone with someone at CHOP and they said I start the RSD program in exactly one week from that day! Just in time! The RND has spread again and has now taken over everything from my fingertips on my right hand to my right shoulder, up my neck, my left shoulder, down my back, and into almost all of my right leg. It has also gotten much worse. I still haven't slept through an entire night in a long time. There have been nights where I haven't slept at all and I have instead spent the entire night screaming and crying in pain like that night in December. There have also been nights that I am able to catch some sleep, but that sleep is filled with nightmares about blood pouring out of my arm, my wrist on fire & various other terrifying events.
News of this treatment is bittersweet though. I'm going to miss a lot of school for it which happened to me last year and it turned out to be extremely detrimental to my grades. I have done some research about the program and it is going to be really hard and extremely painful but I think that I may be ready. I have the goal engraved on my brain to get better and I will not stop until I am.
I start treatment for my RND at CHOP on Wednesday, January 11th 2012 hopefully this will be the end of my story!
Song of the day: Paradise- Coldplay
Meliora :)
wow that was intense ... you're a great writer .. you could write a book . well i wish you the best of luck with everything .
ReplyDeletethank you so much! I would love to write a book and I have actually thought about it a great deal but I'm not too sure if I want to do that just yet. thanks for reading! please share this with your friends!
DeleteGasp.
ReplyDeleteI don't think I'll ever look at you the same way again. D:
I hope you get well soon! <3
Wow!! You need to write a book girl! You have the potential, and with all that you've have been through! Keep writing! xoxo
ReplyDeletethank you so much! I have been thinking about making it into a book but I'm not sure because I keep obsessing over this darn blog post constantly changing wording, adding things as I remember more details, fixing any mistakes, etc. if it were made into a book I would go crazy if I found something I didn't like about it after it is published!
DeleteIt's okay. That's why you have a blog, and a personal journal to look back and record more things that you might have missed. Our memories come and go, and then something will happen to spark up a detail of that memory. Immediately write it down. Try to keep something handy to jot it down, phone, paper, etc. You are basically telling your story to the world right now on your blog, and that's all you need...for now.Take care of yourself first, heal from your recovery, and it good time...a published story of your life will happen. Keep writing! xoxoxo
ReplyDeleteHey Megan, it's Brandon Heinrich lol from your stake lol I just want you to know that your wrist is going to get better, I promise. Even if it means coming up there to give you a blessing myself. When I read this, I completely broke down and cried ( which never happens ) if you would like a blessing, text me. And you could deff become a great writer. But anyways, I hope your wrist gets better at a fast pace, and without pain.
ReplyDeleteP.s. I am SO jealous that you met all those famous people lol, but hey, you had better get better soon.
- your friend Brandon " B-HEINY " Heinrich
thanks guys! it means so much to me that I have your support. it really does make a difference. & Brandon you are too sweet! I actually have already received numerous blessings in the past for my arm the rest of my body once it spread and I was able to receive one from the missionaries right before I started this treatment program. Thank you so much though! & about the celebrities, don't be jealous! celebrities are just people like you and I! & don't feel bad about crying while reading this. I understand that it may be difficult to read and I have had grown men tell me that they had a hard time reading it without crying so no worries! It definitely was a difficult thing for me to go through and then to write about but I felt like I needed to get my story out there while i still remembered most of it! I am so very glad that you enjoyed reading it and I do hope that you will share this link with those who you think may be interested or may like it! thanks for everything! ~ meg
Deletemust of really had it rough huh?
ReplyDeleteYou could say that!
ReplyDelete