Monday, May 30, 2011
Sunday, May 29, 2011
BRUINS!
For the first time in 21 years (1990--the year I was born) the Boston Bruins have made it to the Stanley Cup Finals! GO BRUINS!
Sunday, May 22, 2011
State Finals
Today was Shane's State Championship soccer game and the last youth soccer game he will ever play. His team won on Saturday (semi-finals) to advance to the State finals--unfortunately today they did not come away with the win. It's sad that it is over, but as the saying goes, "all good things must come to an end." I have enjoyed watching him play over the years and grow to become the player he is today. His soccer career is not finished! He will be playing Division 1 collegiate soccer in the fall. Good luck Shane-O!
Friday, May 20, 2011
Snap, Crackle, Pop!
That's how my body feels...
My SI joint popped out again and the rest of my back has been cracking and snapping. My back pain has really been horrible lately. There is not much I can do about it because of my shoulder. It has also been raining a lot so I haven't been able to use the hot tub as much as I'd like.
Recovery from my shoulder surgery has been rough. It's very frustrating to have one arm, especially when my non-operative shoulder dislocates/subluxates. Everything is exhausting and makes simple tasks, such as showering (and typing blog posts), very difficult. I see my surgeon in the middle of June for a post-op appointment and if everything looks good I will be able to stop wearing the pillow sling and start formal PT. I cannot wait for that day--no sling means more freedom and formal PT means progress.
I had my first PT appointment today for my right hip, and resumed therapy for my left knee. My hip is very sore but Cam said I did well--for my first day. For the next 4 weeks I will be doing basic exercises and relearning how to walk. When my shoulder is cleared, the real fun begins. I have A LOT of therapy ahead of me, which involves much more than just strengthening muscles (although that will be very important later on). Now that my hip dysplasia has been corrected we will be working on regaining full body mobility with the the proper motor control and alignment. For example, simply strengthening the quad muscles in my right leg (to prevent dislocations in my right knee) won't do the trick. In order to have true kneecap stability and tracking, I need to regain proper motor control and stability of my pelvis. However, in order to have control over my pelvis I need to have core stability. This pattern continues right on up to my head and neck. Once my shoulder is cleared in 4 weeks we will start at the top. Sounds confusing but it's really just an example of how the body works together to function. If one joint/system/organ is not working correctly, the rest of the body over compensates or works harder--in the end leading to other problems. When everything functions correctly, there is a lesser chance of throwing other areas off. This has definitely been the case for my body--especially over the last year!
*We weren't able to start whole body mobility/motor control earlier because I had too many compounding issues and still needed to have my right hip corrected!
My cyclone puzzled out like this...hip dysplasia/labral tear--->surgery--->quad atrophy--->left kneecap dislocations--->knee surgery= too long on crutches given my EDS--->shoulder dislocations--->shoulder surgery
I will still need my right shoulder and ankles reconstructed at some point--likely starting next summer with my right shoulder. For me, once something is already problematic (dislocating/subluxating, unstable, etc) it usually means or requires surgery.
Shane's State semi-final game is tomorrow. If they win, he plays in the State Championship game on Sunday! GO Shane-o!
I see Dr. Shiple on Tuesday for my for my back and 2 week post-op appointment!
GO BRUINS!
My SI joint popped out again and the rest of my back has been cracking and snapping. My back pain has really been horrible lately. There is not much I can do about it because of my shoulder. It has also been raining a lot so I haven't been able to use the hot tub as much as I'd like.
Recovery from my shoulder surgery has been rough. It's very frustrating to have one arm, especially when my non-operative shoulder dislocates/subluxates. Everything is exhausting and makes simple tasks, such as showering (and typing blog posts), very difficult. I see my surgeon in the middle of June for a post-op appointment and if everything looks good I will be able to stop wearing the pillow sling and start formal PT. I cannot wait for that day--no sling means more freedom and formal PT means progress.
I had my first PT appointment today for my right hip, and resumed therapy for my left knee. My hip is very sore but Cam said I did well--for my first day. For the next 4 weeks I will be doing basic exercises and relearning how to walk. When my shoulder is cleared, the real fun begins. I have A LOT of therapy ahead of me, which involves much more than just strengthening muscles (although that will be very important later on). Now that my hip dysplasia has been corrected we will be working on regaining full body mobility with the the proper motor control and alignment. For example, simply strengthening the quad muscles in my right leg (to prevent dislocations in my right knee) won't do the trick. In order to have true kneecap stability and tracking, I need to regain proper motor control and stability of my pelvis. However, in order to have control over my pelvis I need to have core stability. This pattern continues right on up to my head and neck. Once my shoulder is cleared in 4 weeks we will start at the top. Sounds confusing but it's really just an example of how the body works together to function. If one joint/system/organ is not working correctly, the rest of the body over compensates or works harder--in the end leading to other problems. When everything functions correctly, there is a lesser chance of throwing other areas off. This has definitely been the case for my body--especially over the last year!
*We weren't able to start whole body mobility/motor control earlier because I had too many compounding issues and still needed to have my right hip corrected!
My cyclone puzzled out like this...hip dysplasia/labral tear--->surgery--->quad atrophy--->left kneecap dislocations--->knee surgery= too long on crutches given my EDS--->shoulder dislocations--->shoulder surgery
I will still need my right shoulder and ankles reconstructed at some point--likely starting next summer with my right shoulder. For me, once something is already problematic (dislocating/subluxating, unstable, etc) it usually means or requires surgery.
Shane's State semi-final game is tomorrow. If they win, he plays in the State Championship game on Sunday! GO Shane-o!
I see Dr. Shiple on Tuesday for my for my back and 2 week post-op appointment!
GO BRUINS!
Sunday, May 15, 2011
The Past!
Over the last couple of weeks I have been thinking a lot about my past/childhood (particularly my elementary school years). I've been watching old TV shows, listening to cartoon theme songs, and talking to friends about childhood memories/experiences. I have been thinking about what everything meant at the time and how that compares to today.
At the time I was focused on my gymnastics--competitions, skills, and moving up the levels. Now, (although I will always cherish and remember my gymnastics years) my past is a reflection of my life without pain. A time without surgery, scars, crutches, and physical therapy. I spent my days in the gym training and learning new skills--pushing my body to the limit. I took pride in being athletic and fit. Now I don't even have to push my body to the "limit" and I still struggle. I used to travel across the country with my team for competitions. Now I travel to Boston for appointments and surgery. When I was younger I missed out on a lot of parties and sleepovers. That was okay with me because I was dedicated to my sport and loved being in the gym. Now, I still miss out on hanging out with friends and I don't even have gymnastics to get in the way. Instead I either can't walk, or I am having surgery/recovering from it. It's just not okay with me.
So for old times sake here is a video of a TV show that I watched when I was little--Gullah Gullah Island!
At the time I was focused on my gymnastics--competitions, skills, and moving up the levels. Now, (although I will always cherish and remember my gymnastics years) my past is a reflection of my life without pain. A time without surgery, scars, crutches, and physical therapy. I spent my days in the gym training and learning new skills--pushing my body to the limit. I took pride in being athletic and fit. Now I don't even have to push my body to the "limit" and I still struggle. I used to travel across the country with my team for competitions. Now I travel to Boston for appointments and surgery. When I was younger I missed out on a lot of parties and sleepovers. That was okay with me because I was dedicated to my sport and loved being in the gym. Now, I still miss out on hanging out with friends and I don't even have gymnastics to get in the way. Instead I either can't walk, or I am having surgery/recovering from it. It's just not okay with me.
I know that "living in the past" isn't healthy. But my past is a reminder that I HAVE lived without pain. And that is something I need to hold on to. After all what we remember from childhood, we remember forever.
I don't mean for this post to be a negative rant about what I have lost, but a reflection of my past and why it is important. I am a positive person and truly believe that a person's attitude makes all the difference in life. I also believe that everything happens for a reason and God only gives you what you can handle. That's why I was able to accept EDS and a slightly altered way of life. I have learned from EDS that you can't take anything in life for granted. Cherish your good days and learn from the bad.
"When you look back over your shoulder, at everything you've done. Put the good times in your pocket. Let the bad ones make you strong, and keep chuggin' along"
So for old times sake here is a video of a TV show that I watched when I was little--Gullah Gullah Island!
"Memory is a way of holding onto the things you love, the things you are, the things you never want to lose."
Saturday, May 14, 2011
One Arm!
I haven't been updating as often as I usually do. This is in part because I have one arm to type with and it's exhausting and painful for my right wrist. I also don't have much to report on at the moment but here's a quick update on the past week.
I am home--discharged last Saturday! My mom and I spent the night at my grandma's house in Connecticut and we drove home on Sunday.
I am 1 week post-op! I am still in a considerable amount of pain but only take 2 Tylenol once a day. Honestly, I wish I had another hip--I would rather have another PAO v.s. shoulder surgery. Shoulder surgery is rough and very frustrating (and I haven't even started therapy). My entire arm hurts, I can't straighten my elbow, on top of Restless Leg Syndrome I have a restless arm that I want to shake and bend and move! My neck and upper back are in constant spasm. I HATE not being able to use my arm. You don't realize how much you use your arms until you are limited to one.
I see Dr. Shiple on the 24th for my 2 week post-op visit. He will check the incision and I will discuss the procedure and recovery protocol with him. I also start formal PT for my hip next week and will resume therapy on my left knee. I am not allowed to start shoulder therapy until I see my surgeon in June.
Our hot tub was installed this week! The jets feel amazing on my back and the warm water is a great therapeutic aid to all of my joints. It's so relaxing!
I was able to schedule 3 out of my 5 classes for the Fall semester! I WILL return to school this fall and I am very excited. I am also getting my own apartment to be closer to school, work, PT and Dr. Shiple. I am so ready to get back to my life. I still have more surgeries but I plan on having them next summer.
Shane's senior prom is tomorrow and I will be taking pictures. He also has a State Tournament soccer game on Sunday! Go SHANE-O.
The Bruins play Tampa Bay tomorrow in round 3 of the Eastern Conference playoffs! GO B's!!!
I am home--discharged last Saturday! My mom and I spent the night at my grandma's house in Connecticut and we drove home on Sunday.
I am 1 week post-op! I am still in a considerable amount of pain but only take 2 Tylenol once a day. Honestly, I wish I had another hip--I would rather have another PAO v.s. shoulder surgery. Shoulder surgery is rough and very frustrating (and I haven't even started therapy). My entire arm hurts, I can't straighten my elbow, on top of Restless Leg Syndrome I have a restless arm that I want to shake and bend and move! My neck and upper back are in constant spasm. I HATE not being able to use my arm. You don't realize how much you use your arms until you are limited to one.
I see Dr. Shiple on the 24th for my 2 week post-op visit. He will check the incision and I will discuss the procedure and recovery protocol with him. I also start formal PT for my hip next week and will resume therapy on my left knee. I am not allowed to start shoulder therapy until I see my surgeon in June.
Our hot tub was installed this week! The jets feel amazing on my back and the warm water is a great therapeutic aid to all of my joints. It's so relaxing!
I was able to schedule 3 out of my 5 classes for the Fall semester! I WILL return to school this fall and I am very excited. I am also getting my own apartment to be closer to school, work, PT and Dr. Shiple. I am so ready to get back to my life. I still have more surgeries but I plan on having them next summer.
Shane's senior prom is tomorrow and I will be taking pictures. He also has a State Tournament soccer game on Sunday! Go SHANE-O.
The Bruins play Tampa Bay tomorrow in round 3 of the Eastern Conference playoffs! GO B's!!!
Saturday, May 7, 2011
1010 NW
I am back in MY room--1010NW. I spent 11 days in this room for my LPAO. I was happy when the PACU nurse told me I was assigned to 1010. It's sad, in a way, that I'd be excited about a hospital room..but when you're admitted to the hospital for several days (and for multiples surgeries over the course of a year) it's nice to be in a familiar setting with nurses you've have had before. It makes the overall experience much easier because let's be realistic--no one wants to be admitted to the hospital.
Everything went really well in surgery. My surgeon's report was positive and we expect good results. I have had a lot of my favorite nurses during this stay! It's always nice when you have the same nurses--they know you a lot better and it's a comfortable feeling.
The pain has been very bad. I am taking Tylenol and Toradol. Toradol is a strong anti-inflammatory (NSAIDs) used to control moderately severe pain--typically after surgery. It is NOT a narcotic! I had Toradol after my RPAO to help control the pain and it helped take the edge off. Pain control is always the hardest part as I don't take narcotics or opioids. However, it is not impossible to manage pain on NSAIDs and Tylenol. I do it for every surgery and get along just fine after a few days. If my pain is controlled, I should be discharged tomorrow. Otherwise I will likely leave on Monday.
Shoulder surgery recovery is very long and painful. I will spend 6 weeks in a pillow sling. Formal PT will start at 6 weeks post-op (after I am cleared from the sling). As I mentioned previously, ROM will not be a focus. Strength will be very important to help maintain a stable joint.
"The goal of any surgery is total recovery--to come out better than you were before. Some patients heal quickly and feel immediate relief. For others the healing happens gradually, and it's not until months or even years later that you realize you don't hurt anymore. So the challenge after any surgery is to be patient. But if you can make it through the first weeks and months, if you believe that healing is possible, then you can get your life back." - Grey's Anatomy
Note: This post was typed with one hand.
Everything went really well in surgery. My surgeon's report was positive and we expect good results. I have had a lot of my favorite nurses during this stay! It's always nice when you have the same nurses--they know you a lot better and it's a comfortable feeling.
The pain has been very bad. I am taking Tylenol and Toradol. Toradol is a strong anti-inflammatory (NSAIDs) used to control moderately severe pain--typically after surgery. It is NOT a narcotic! I had Toradol after my RPAO to help control the pain and it helped take the edge off. Pain control is always the hardest part as I don't take narcotics or opioids. However, it is not impossible to manage pain on NSAIDs and Tylenol. I do it for every surgery and get along just fine after a few days. If my pain is controlled, I should be discharged tomorrow. Otherwise I will likely leave on Monday.
"Pain, you just have to ride it out, hope it goes away on its own, hope the wound that caused it heals. There are no solutions, no easy answers, you just breathe deep and wait for it to subside. Most of the time pain can be managed but sometimes the pain gets you where you least expect it. Hits way below the belt and doesn't let up. Pain, you just have to fight through, because the truth is you can't outrun it and life always makes more." - Grey's Anatomy
Shoulder surgery recovery is very long and painful. I will spend 6 weeks in a pillow sling. Formal PT will start at 6 weeks post-op (after I am cleared from the sling). As I mentioned previously, ROM will not be a focus. Strength will be very important to help maintain a stable joint.
"The goal of any surgery is total recovery--to come out better than you were before. Some patients heal quickly and feel immediate relief. For others the healing happens gradually, and it's not until months or even years later that you realize you don't hurt anymore. So the challenge after any surgery is to be patient. But if you can make it through the first weeks and months, if you believe that healing is possible, then you can get your life back." - Grey's Anatomy
Note: This post was typed with one hand.
Thursday, May 5, 2011
Post-Op Update
I saw both hip surgeons today for my post-op appointments (left knee and right hip). My right hip is doing great. The bones are healing ahead of schedule. I would be weaning to 1 crutch but because I am having left shoulder surgery tomorrow, and that is the side the crutch goes on, I am in a wheelchair for about 2 more weeks. I am allowed to fully weight-bear to transition in and out of bed and the car. The left knee is doing well too. The tracking is perfect and it's secure. We agreed that once I reach 125 degrees of flexion we will not push it any further. There is no need to reach "end limit" because with EDS my "end limit" is already beyond "normal." I will start back with Cam when we return and we will focus on strength.
My primary surgeon also evaluated my right knee as it has been trying to subluxate for weeks now. Unfortunately it is very loose and is not tracking correctly. It is tilted and sitting slightly lateral to the groove. As of right now I will continue to wear the stabilizing brace and work on regaining quad strength in PT. He hopes we can "get away" without surgery, or at least hold off as long as possible. I may have already reached the point of no return. At least this time I started in the stabilizing brace immediately verses after the first several dislocations. There is no easy solution to stabilizing my knee and preventing a dislocation--just bracing and/or taping.
I had the pleasure of meeting another Hip Chick today--Katie! It was great to finally meet her! She is such a sweetheart. She had her PAO at Children's on Monday! Hopefully I see her one more time before I am discharged.
Tomorrow afternoon is my left shoulder surgery! The surgery will take several hours and I will spend 1-2 nights in the hospital. I will post an update when I can.
Tuesday, May 3, 2011
Shoulder Surgery
My pre-op appointment for my shoulder surgery was yesterday (Monday). I also saw a pain specialist to discuss my RSD/CRPS.
My shoulder surgeon is great--very nice and informative. I feel like I can have normal conversations with him, rather than the basic patient-doctor discussions. He shows that he really cares and wants to help. He will stabilize my shoulder as much as possible. We did discuss the right shoulder (which is also dislocating) and he said I will need that fixed at some point. I WILL be returning to school in the fall so the right shoulder will likely wait until next summer.
The procedure will be open, with the incision running down the front of my shoulder. It will take a couple of hours (he wants to make sure he tightens everything really well). He is planning on bringing the bottom of the shoulder capsule to the top and overlapping it. This should keep the shoulder secure. If there are any tears he will repair them as well. I will spend 1-2 nights in the hospital and will be in a pillow sling for about 6 weeks. The typical amount of time immobilized is 3-4 weeks but because of EDS we don't want to rush into regaining motion. If all goes according to plan (surgery and recovery wise) I should start therapy when the sling comes off. Therapy will be long and difficult. Technically I shouldn't regain full ROM, but with EDS there is no guarantee. Seeing as I will NOT be returning to gymnastics, ROM will not be a focus in therapy. Once I reach a functional level of joint range we will stop and the focus will solely be to strengthen.
My visit with the pain specialist was very productive. I was prescribed a medication to help me sleep. This will NOT interfere with my Neurontin (yay for sleep). I will start taking it after surgery. I will maintain 1800mg of Neurontin up until surgery. Sometime next week (when I am feeling up to it) I will call my pain doctor and we will determine whether or not I should increase the dose of Neurontin or add another medication to take as well. I also need to start working more proactively on desensitization. My first step is lotion. There is no way to determine how long until I can progress to another "texture."
Tomorrow my dad and I are going to the hotel where I will stay until surgery. Thursday is my post-op day (knee and hip). I will also talk to my knee surgeon about my right knee and fibula and see if there is anything I can do. My shoulder surgeon did mention that it is likely I will need my right knee reconstructed at some point..but we will hold off as long as possible!
Happy EDS Awareness Month! I am currently going through the process of getting a Proclamation from the PA Governor to make May the official (statewide) EDS Awareness month! If you are interested in pursuing this within your own state please contact Ehlers Danlos Syndrome Network C.A.R.E.S (click here).
My shoulder surgeon is great--very nice and informative. I feel like I can have normal conversations with him, rather than the basic patient-doctor discussions. He shows that he really cares and wants to help. He will stabilize my shoulder as much as possible. We did discuss the right shoulder (which is also dislocating) and he said I will need that fixed at some point. I WILL be returning to school in the fall so the right shoulder will likely wait until next summer.
The procedure will be open, with the incision running down the front of my shoulder. It will take a couple of hours (he wants to make sure he tightens everything really well). He is planning on bringing the bottom of the shoulder capsule to the top and overlapping it. This should keep the shoulder secure. If there are any tears he will repair them as well. I will spend 1-2 nights in the hospital and will be in a pillow sling for about 6 weeks. The typical amount of time immobilized is 3-4 weeks but because of EDS we don't want to rush into regaining motion. If all goes according to plan (surgery and recovery wise) I should start therapy when the sling comes off. Therapy will be long and difficult. Technically I shouldn't regain full ROM, but with EDS there is no guarantee. Seeing as I will NOT be returning to gymnastics, ROM will not be a focus in therapy. Once I reach a functional level of joint range we will stop and the focus will solely be to strengthen.
My visit with the pain specialist was very productive. I was prescribed a medication to help me sleep. This will NOT interfere with my Neurontin (yay for sleep). I will start taking it after surgery. I will maintain 1800mg of Neurontin up until surgery. Sometime next week (when I am feeling up to it) I will call my pain doctor and we will determine whether or not I should increase the dose of Neurontin or add another medication to take as well. I also need to start working more proactively on desensitization. My first step is lotion. There is no way to determine how long until I can progress to another "texture."
Tomorrow my dad and I are going to the hotel where I will stay until surgery. Thursday is my post-op day (knee and hip). I will also talk to my knee surgeon about my right knee and fibula and see if there is anything I can do. My shoulder surgeon did mention that it is likely I will need my right knee reconstructed at some point..but we will hold off as long as possible!
Happy EDS Awareness Month! I am currently going through the process of getting a Proclamation from the PA Governor to make May the official (statewide) EDS Awareness month! If you are interested in pursuing this within your own state please contact Ehlers Danlos Syndrome Network C.A.R.E.S (click here).
EDS Awareness Month
May is Ehlers Danlos Syndrome awareness month. Help increase awareness and education on this virtually unknown disorder. Check out this list of "31 Days of EDS facts for May"
For those of you who are new to my blog or have never heard of Ehlers Danlos Syndrome here is an explanation:
How you can help:
1. Post the following text (or your own version) to your facebook or twitter page:
"May is Ehlers Danlos Syndrome Awareness month. EDS is a rare connective tissue disorder marked by hypermobile and unstable joints, fragile blood vessels and organs, and even heart complications. There is no cure or specialized treatment. Most doctors don't know what EDS is. Help spread awareness and education. Post this if you have or know someone living with EDS. With awareness and research there can be a cure."
2. Download and/or post the following EDS posters to your facebook or twitter page. Ask your doctor, physical therapist and/or hospital if you can post them in their lobbies or waiting rooms. Check with other local businesses. Ask permission before posting. *If you are interested in larger poster size versions for distribution please contact EDS Network Cares (click here)
For those of you who are new to my blog or have never heard of Ehlers Danlos Syndrome here is an explanation:
EDS is a rare connective tissue disorder affecting about 1 in 20,000. EDS affects connective tissue, which are tissues that support the skin, bones, blood vessels, and other organs. There are 6 subtypes that vary in severity from mild to life threatening. An unusually large range of joint movement (hypermobility) occurs with most forms, particularly the hypermobility type. The loose joints are unstable and prone to dislocations, chronic pain, and early onset arthritis. People with vascular type EDS are at risk of serious complications. Serious complications include tearing (rupture) of major blood vessels and organs. These complications can be fatal. About 1 in 4 people with vascular type EDS develop a serious health problem by age 20, and more than 80 percent develop a life threatening complication by age 40. The median age of death is 48 years.
There are a number of secondary conditions connected to EDS that can be very disabling as well- Some of the more common disorders are POTS, mitral valve prolapse, orthostatic hypotension, IBS, asthma, dysautonomia, and chiari malformation.
So You Think You Might Have EDS- very informative article about the symptoms and signs of EDS
*This article should not replace the advice of a medical professional. If you think you might have EDS please consider seeing a genetic specialist.
1. Post the following text (or your own version) to your facebook or twitter page:
"May is Ehlers Danlos Syndrome Awareness month. EDS is a rare connective tissue disorder marked by hypermobile and unstable joints, fragile blood vessels and organs, and even heart complications. There is no cure or specialized treatment. Most doctors don't know what EDS is. Help spread awareness and education. Post this if you have or know someone living with EDS. With awareness and research there can be a cure."
2. Download and/or post the following EDS posters to your facebook or twitter page. Ask your doctor, physical therapist and/or hospital if you can post them in their lobbies or waiting rooms. Check with other local businesses. Ask permission before posting. *If you are interested in larger poster size versions for distribution please contact EDS Network Cares (click here)
(Property of EDSNC)
(Property of EDSNC)
(Property of EDSNC)
(Property of EDSNC)
3. Fundraising! Donate to EDSNC (Ehlers Danlos Syndrome Network C.A.R.E.S). There are two research projects currently underway--any money donated to the cause is extremely helpful (click here for an EDSNC template for donations). If you are interested in purchasing awareness bracelets through EDSNC click here! Donations are also accepted through EDSNF (Ehlers Danlos Syndrome National Foundation)!
4. Be creative!
-Create an "Ask me about EDS" shirt or badge!
-Hold a bake sale with the proceeds benefiting EDS research
-Contact local radio stations
...There are many different ways to spread awareness.
**Not only do most people not know what EDS is, but most physicians have never heard of it either. These templates are great to help educate your doctors about EDS- provided by EDSNF (.pdf files)
- Wallet card- downloadable
With awareness and research there can be a cure! Help make a difference!
