OMG guys. Surgery is in 15 hours. I'm getting so anxious. I can't wait. I have to be at the hospital in 12 hours. I am so ready for this.
So today, I met with my surgeon to go over any questions I had and to get some more xrays. He gave me some awesome news. I only have to be two weeks on crutches! After I come in for my two week check up, I can put full weight on my leg. So this is awesome because I am not limited to doing certain things for so long. Also, I won't need the CPM machine or the GameReady ice machine. So I can return to school like I had hoped! Also, this gives me hope of going ice skating for my birthday in November and going snow skiing this winter and going to my friend's sweet sixteen at the end of September and maybe even dancing! I'm so happy for this news.
So I am basically just prepping for surgery now. I'm trying to eat a lot considering I can't eat tomorrow. I washed my hip in the shower with the iodine scrub. I'm in the process of packing my things. I'm even bringing my Build-a-bear monkey because I'm so cool!
So that's it. I made a new YouTube video earlier so here is the link: http://www.youtube.com/watch?v=aGdr4NfQaQg
Wish me luck!
Wednesday, August 24, 2011
Friday, August 12, 2011
Educating Your Family
Ever since I was diagnosed, I have only thought about myself. I thought about how I need to accept my condition and move forward. What I failed to remember is that my family needs to accept this too.
My immediate family has been handling it relatively well. The only real problem that my mom is having is that a mother can usually fix their kid. But my mom can't fix this. And she has been doing really well with starting to accept that.
What makes me feel awkward is that my mom just gave some information on EDS to my grandmother to read about. I feel weird because I never thought of her and how she should know. I never even personally told her that I have it. I'm thinking that my mom told her. I don't know, it just feels awkward.
So educating your family is essential to gain support from them. I am just beginning to realize that the more I educate my family, the more they understand, which means the more they are there for me.
My immediate family has been handling it relatively well. The only real problem that my mom is having is that a mother can usually fix their kid. But my mom can't fix this. And she has been doing really well with starting to accept that.
What makes me feel awkward is that my mom just gave some information on EDS to my grandmother to read about. I feel weird because I never thought of her and how she should know. I never even personally told her that I have it. I'm thinking that my mom told her. I don't know, it just feels awkward.
So educating your family is essential to gain support from them. I am just beginning to realize that the more I educate my family, the more they understand, which means the more they are there for me.
Is The Pain Really Worth It?
Most people with chronic illnesses (MS, EDS, Fibromyalgia, etc.) know that with some things they do, there will be repercussions.
Yesterday, my family and our friends did our annual trip to a local water park. I wasn't able to catch my breath all day. My chest was hurting all day. So my mom took me to get checked out at the little first aid place. My blood pressure was actually really good. However, my pulse was elevated, but not to the point where they should have worried. The guy even offered to give me oxygen but I was hungry so I just said I would relax and I left to go find some food. After I ate, I went on some other rides about a dozen times, ignoring the pain. It wasn't the smartest idea, but I did what I had to do to take my mind off the pain.
Last night, after we left the water park, we went out to eat. I was in so much pain - my hips were hurting, my feet were killing me, my head was pounding, and my chest was still under pressure. They first seated us outside on the patio, in which I could not handle because of the heat. When I asked [politely] if we could move inside, everyone at our table gave a big fuss, making me feel insignificant. Once we were finally inside, everyone started fake-complaining how it was too cold. It wasn't funny, at all. It pissed me off because it made them seem insensitive.
When we finished our meal, I got up from my seat and hobbled on out to the car. The pain had increased so much. In the parking lot, I just hugged my mom and cried on her shoulder. The day was not worth the pain. The water park wasn't really that fun because of my pain. The walking killed me. It was so cold that when I would come out of the wave pool, I wasn't able to feel my thumbs. It was just an uncomfortable day.
All in all, sometimes the pain isn't worth pushing for. You can only push so much.
This weekend, my family is going to our family beach house. There, we waterski and go tubing and fishing and all active things. I don't even know if I can go waterskiing. And I ALWAYS go waterskiing out there. So that expresses how much pain I'm in. And we were specifically going out this weekend so we could have a waterskiing 'competition' among the cousins. We were originally supposed to take my dad's car out because it is cheaper with gas. But his car is small and has minimal leg room. So luckily, I was able to convince my mom to take her big van. Hopefully it'll be more comfortable.
But overall, pushing to get through the water park yesterday has ruined my weekend. I just want the surgery to come faster so I can get off my feet and stop pushing. I know I could get off my feet now, but being that I can walk around now, I have the incentive to do normal things. 13 days. I can do it.
Yesterday, my family and our friends did our annual trip to a local water park. I wasn't able to catch my breath all day. My chest was hurting all day. So my mom took me to get checked out at the little first aid place. My blood pressure was actually really good. However, my pulse was elevated, but not to the point where they should have worried. The guy even offered to give me oxygen but I was hungry so I just said I would relax and I left to go find some food. After I ate, I went on some other rides about a dozen times, ignoring the pain. It wasn't the smartest idea, but I did what I had to do to take my mind off the pain.
Last night, after we left the water park, we went out to eat. I was in so much pain - my hips were hurting, my feet were killing me, my head was pounding, and my chest was still under pressure. They first seated us outside on the patio, in which I could not handle because of the heat. When I asked [politely] if we could move inside, everyone at our table gave a big fuss, making me feel insignificant. Once we were finally inside, everyone started fake-complaining how it was too cold. It wasn't funny, at all. It pissed me off because it made them seem insensitive.
When we finished our meal, I got up from my seat and hobbled on out to the car. The pain had increased so much. In the parking lot, I just hugged my mom and cried on her shoulder. The day was not worth the pain. The water park wasn't really that fun because of my pain. The walking killed me. It was so cold that when I would come out of the wave pool, I wasn't able to feel my thumbs. It was just an uncomfortable day.
All in all, sometimes the pain isn't worth pushing for. You can only push so much.
This weekend, my family is going to our family beach house. There, we waterski and go tubing and fishing and all active things. I don't even know if I can go waterskiing. And I ALWAYS go waterskiing out there. So that expresses how much pain I'm in. And we were specifically going out this weekend so we could have a waterskiing 'competition' among the cousins. We were originally supposed to take my dad's car out because it is cheaper with gas. But his car is small and has minimal leg room. So luckily, I was able to convince my mom to take her big van. Hopefully it'll be more comfortable.
But overall, pushing to get through the water park yesterday has ruined my weekend. I just want the surgery to come faster so I can get off my feet and stop pushing. I know I could get off my feet now, but being that I can walk around now, I have the incentive to do normal things. 13 days. I can do it.
Wednesday, August 10, 2011
Two Weeks to Go...
So I'm just realizing that I'm gonna be having major hip surgery two weeks from today. I don't think the seriousness of the surgery has settled in yet.
I am going to be having a derotational osteotomy. Here is the link with all the surgery info and some pretty good diagrams: http://gait.aidi.udel.edu/procedures/femoral_osteotomy.pdf . What they are doing in the surgery is they will cut my femur in half, rotate the ball part so that it is in the socket properly, and then pin it in place with a metal rod so it can heal properly.
I have to be off my feet for six weeks, which means returning to school on crutches. My mom doesn't want me to go back to school, but I'm making it my goal to go back. I will be going through some intense physical therapy: CPM and Game Ready machines at home for six weeks, and then commuting into the city to HSS so I can do physical therapy there probably once or twice a week.
Now that I'm typing it all out, I'm starting to get more nervous. It's not the whole surgery part that scares me. I love going into the hospital and actually having the surgery. Since I want to be a nurse, I take the whole thing as a learning experience. Plus, all the nurses and doctors know me so I am completely comfortable. It's the recovery that is beginning to scare me. Like, I don't even really know what they're doing in the surgery. I just know that so far it's a derotational osteotomy. But they could find other stuff once they get inside. Last time I needed a blood transfusion. My oxygen levels dropped really low. My blood pressure was 80 over 40. I wasn't so good. But I know I can do this. And it's not the pain that scares me either. I don't remember having much pain from the other surgeries. The fifth day always hurts the most. But I don't think pain will be an issue, considering the fact that I have such a high pain tolerance. It's going to be the physical therapy that will be tough. I will pretty much have no muscle function in my hip for six weeks. When the six weeks is up, it's not like I can just go back to walking and functioning normally. I will have this weird, retarded limp and I will pretty much have to learn how to walk all over again.
Every year, my family and our friends do an annual Hershey Park trip for UPS. It's always in the beginning of October. This year, I will have to go in my wheelchair. But I don't really care because I will get to the front of the line for the rides. So that is another big goal for me.
Right now, I think my main concern is preparing for the surgery. Making sure my room stays neat, getting out my crutches and the wheelchair and the shower chair, taking all my medicines to manage my current pain, going to doctor appointments. I just have to get through day by day.
Two weeks. Fourteen days. I can do this.
I am going to be having a derotational osteotomy. Here is the link with all the surgery info and some pretty good diagrams: http://gait.aidi.udel.edu/procedures/femoral_osteotomy.pdf . What they are doing in the surgery is they will cut my femur in half, rotate the ball part so that it is in the socket properly, and then pin it in place with a metal rod so it can heal properly.
I have to be off my feet for six weeks, which means returning to school on crutches. My mom doesn't want me to go back to school, but I'm making it my goal to go back. I will be going through some intense physical therapy: CPM and Game Ready machines at home for six weeks, and then commuting into the city to HSS so I can do physical therapy there probably once or twice a week.
Now that I'm typing it all out, I'm starting to get more nervous. It's not the whole surgery part that scares me. I love going into the hospital and actually having the surgery. Since I want to be a nurse, I take the whole thing as a learning experience. Plus, all the nurses and doctors know me so I am completely comfortable. It's the recovery that is beginning to scare me. Like, I don't even really know what they're doing in the surgery. I just know that so far it's a derotational osteotomy. But they could find other stuff once they get inside. Last time I needed a blood transfusion. My oxygen levels dropped really low. My blood pressure was 80 over 40. I wasn't so good. But I know I can do this. And it's not the pain that scares me either. I don't remember having much pain from the other surgeries. The fifth day always hurts the most. But I don't think pain will be an issue, considering the fact that I have such a high pain tolerance. It's going to be the physical therapy that will be tough. I will pretty much have no muscle function in my hip for six weeks. When the six weeks is up, it's not like I can just go back to walking and functioning normally. I will have this weird, retarded limp and I will pretty much have to learn how to walk all over again.
Every year, my family and our friends do an annual Hershey Park trip for UPS. It's always in the beginning of October. This year, I will have to go in my wheelchair. But I don't really care because I will get to the front of the line for the rides. So that is another big goal for me.
Right now, I think my main concern is preparing for the surgery. Making sure my room stays neat, getting out my crutches and the wheelchair and the shower chair, taking all my medicines to manage my current pain, going to doctor appointments. I just have to get through day by day.
Two weeks. Fourteen days. I can do this.
Check Out My YouTube Channel
So I have a YouTube channel that I use to make vlogs with every once in a while. I'm going to be making a few more videos soon considering my upcoming surgery. But here's the channel. Comment, rate, subscribe, all that fun stuff :)
http://www.youtube.com/user/itsserinn?feature=mhee
http://www.youtube.com/user/itsserinn?feature=mhee
What is EDS?
Many people who know me ask, "Erin, what exactly is wrong with you?" EDS is very hard to explain to someone who is not very familiar with medical terms and genetic jargon. So I am going to try to place a few definitions of the syndrome together.
According to Pub Med Health, "Ehlers-Danlos syndrome is a group of inherited disorders marked by extremely loose joints, hyperelastic skin that bruises easily, and easily damaged blood vessels." Individuals with EDS have a defect in their connective tissue, the tissue that provides support to many body parts such as the skin, muscles and ligaments. The fragile skin and unstable joints found in EDS are the result of faulty collagen. Collagen is a protein, which acts as a 'glue' in the body, adding strength and elasticity to connective tissue.
The symptoms of EDS are double jointedness, delicate skin, easy scarring, poor wound healing, flat feet, increased joint mobility, popping joints, joint pain, joint dislocation, mitral valve prolapse, vision problems, and much more.
Unfortunately, there is no cure for EDS. The disease can leave one in constant pain and discomfort. My geneticist has observed that in recent studies, the ingestion of high doses of vitamin c (2 g) has helped to preserve joints. I have been having surgeries to fix the placement of my bones, not to cure this disease.
According to Pub Med Health, "Ehlers-Danlos syndrome is a group of inherited disorders marked by extremely loose joints, hyperelastic skin that bruises easily, and easily damaged blood vessels." Individuals with EDS have a defect in their connective tissue, the tissue that provides support to many body parts such as the skin, muscles and ligaments. The fragile skin and unstable joints found in EDS are the result of faulty collagen. Collagen is a protein, which acts as a 'glue' in the body, adding strength and elasticity to connective tissue.
The symptoms of EDS are double jointedness, delicate skin, easy scarring, poor wound healing, flat feet, increased joint mobility, popping joints, joint pain, joint dislocation, mitral valve prolapse, vision problems, and much more.
Unfortunately, there is no cure for EDS. The disease can leave one in constant pain and discomfort. My geneticist has observed that in recent studies, the ingestion of high doses of vitamin c (2 g) has helped to preserve joints. I have been having surgeries to fix the placement of my bones, not to cure this disease.
My Story
I have a number of health issues. Most of my joints dislocate and crack and pop. I can do a lot of hand tricks, such as bending my thumb to my forearm and other fun stuff. I can put myself in all weird positions because I am double-jointed. I have a small mitral valve prolapse of my heart.
My main concern is my hips. Both of my hips rotate inward at thirty-three and thirty-one degrees. A normal hip is placed in the socket at fifteen degrees. This was causing me a great deal of pain and I could not function in the ways I normally had. In July of 2010, my hip surgeons at the Hospital for Special Surgery performed a left hip surgical dislocation with arthrotomy, osteoplasty of the head neck junction with labral repair, and derotational osteotomy. A hip osteotomy is a surgical procedure in which the bones of the hip joint are cut, reoriented, and fixed in a new position. Healthy cartilage is placed in the weight-bearing area of the joint, followed by reconstruction of the joint in a more normal position. The surgery took about five hours, as I recall. It was a tough procedure. I was not allowed to put any weight on my left leg for six weeks. Once the six weeks were up, I pretty much had to learn how to walk again because I had not used my muscles in that leg for a long time. During that surgery, they placed a metal rod and seven screws into my femur to help it heal properly. The plan was to remove that hardware this summer when I had the same surgery on my right leg. However, the metal started to cause me great pain. I weighed only ninety-five pounds as for the fact that I lose a lot of weight from the surgery. But because I was so skinny, you could literally touch the outside of my leg and feel the bumps of the screws.
So on February 2 of this year, they removed all of the hardware. At the same time, they performed an arthroscopic procedure called an iliopsoas release. Your iliopsoas is a ligament that holds your spine and your pelvis together. Mine was (and possibly still is) what was causing my hips to snap and crack and all that loveliness. So they cut a diamond-shaped hole in my iliopsoas to release tension, in hopes that it would actually work. Well, it didn't.
So now we are back to square one. And on top of this mess, my right hip is acting up horribly. My iliotibial band is extremely irritated. I had a cortisone injection into this ligament. It worked for, I would say, a good four weeks. But when it finally wore off, the pain was worse than before the injection. I was in so much pain that I couldn't even go to school. I was on home instruction for eight weeks.
While working with my surgeons to come to the conclusion of my hip issues, I began to go through a series of tests for Ehlers Danlos Syndrome, a very rare connective tissue disorder. It took about eight weeks total to finish the testing and declare the fact that I have EDS. I have type III, which is the hypermobility type (I will create another post about it specifically). So now that they have discovered that I in fact have this disease, we are working on ways to manage my pain.
Back to my hips... After seeing the doctors a few more times, it became apparent that I was going to need another surgery, this time on my right hip. I am having a surgery in late August on my right hip to alleviate some of the pain. So now, I am just trying to get through day by day, managing the pain as best as I can.
More posts to come; IIWII.
So on February 2 of this year, they removed all of the hardware. At the same time, they performed an arthroscopic procedure called an iliopsoas release. Your iliopsoas is a ligament that holds your spine and your pelvis together. Mine was (and possibly still is) what was causing my hips to snap and crack and all that loveliness. So they cut a diamond-shaped hole in my iliopsoas to release tension, in hopes that it would actually work. Well, it didn't.
So now we are back to square one. And on top of this mess, my right hip is acting up horribly. My iliotibial band is extremely irritated. I had a cortisone injection into this ligament. It worked for, I would say, a good four weeks. But when it finally wore off, the pain was worse than before the injection. I was in so much pain that I couldn't even go to school. I was on home instruction for eight weeks.
While working with my surgeons to come to the conclusion of my hip issues, I began to go through a series of tests for Ehlers Danlos Syndrome, a very rare connective tissue disorder. It took about eight weeks total to finish the testing and declare the fact that I have EDS. I have type III, which is the hypermobility type (I will create another post about it specifically). So now that they have discovered that I in fact have this disease, we are working on ways to manage my pain.
Back to my hips... After seeing the doctors a few more times, it became apparent that I was going to need another surgery, this time on my right hip. I am having a surgery in late August on my right hip to alleviate some of the pain. So now, I am just trying to get through day by day, managing the pain as best as I can.
More posts to come; IIWII.
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