My kyphosis/scoliosis story- Part 1.

 One area of the body that Carpenter Syndrome can cause deformities in is the spine as some people will have a condition called kyphoscoliosis.  This has been true for me as I was diagnosed in my early teen years with kyphoscoliosis.

When I was young, my mom would notice that I had a hard time standing and sitting up straight as I would tend to slouch.  She thought it was just because I had bad posture and would give me reminders to sit up straight.  At one of my follow up appointments with my orthopedic doctor, he noticed that I had more of a rounded upper back as well as noticing some other physical signs associated with kyphosis.  After doing a physical exam and seeing my x-ray results I was diagnosed with kyphoscoliosis.  When I was diagnosed, my curves in my lower and upper back were significant and I was put in a brace for my lower and upper back.  I also saw a chiropractor on a regular basis during my teen years and would have appointments with my doctor to monitor my curves.

When my body was close to being done growing, my family and I were told by my care team at the time that my curves had not changed that much and would most likely not progress in my adult years.  I would get mild pain in my back sometimes as well as some fatigue but I did not really think that much of it.  I think part of the reason was because I had just become used to having some pain in my back.  Around the time of my upper 20s, I started having some issues with my hip and pain in my thigh area.  When I was getting an x-ray done of my hip, the orthopedic doctor that I was seeing noticed the larger curve in my lower back.  The doctor told me that my hip pain might be coming more from my back and recommended seeing a back doctor.

Shortly after this my primary care doctor had me get a more detailed x-ray of my back to see the degrees of my curves.  My x-ray results came back showing a 30 degree curve in my lower back and a 70 degree curve in my upper back.  I will talk more about this in my next blog.  Sincerely Laura.

Chronic Pain & Rest.

 While I was icing earlier today, I was on instagram and came across a post from a page called the_scoliosis_book.  The post talked about how sometimes we have things that we want to get done or accomplish but can't get done because of having to much pain in our bodies and instead have to rest.  I thought this post was so relevant to people who deal with any type of chronic pain. I personally know that I sometimes either feel guilt or feel like I am being unproductive on days when I have to rest more due to pain.  This post was a good reminder to me that resting is a way that on some days I have to do more of to take care of my body.  I also have had to learn how to better pace myself during the day to try and avoid flare ups.

How I incorporate movement throughout the day.

One thing that I have found helpful when it comes to doing chores or any type of movement is by using a timer.  I will set a timer whether it is for ten or fifteen minuets and will do either a chore or a short low impact workout such as my PT exercises or upper body exercises.  This helps me to set a goal that I know I will be able to do and then stop when the time is up.  I try and do this at least 3-4 times a day but it also depends on what type of day pain wise I am having.  Some days I get more movement in and other days it is less. Sometimes my movement is also just taking a break to stretch as sometimes even that alone can help my body feel a little better. I think the main thing is finding what is helpful and works for you.  One thing that has helped me on days when my pain level is higher is having a set of hobbies written down that I can go through and do to try and help distract myself from the pain.

Dealing with High Pain Days.

One main thing that I have found very helpful to do when I have more pain is listening to soft music as it helps me to take deep breaths and calm my body down some.  Journaling has also been a great source for me to write down the thoughts that go through my head when my pain level is higher.  I also have a list of hobbies that I like to do and will do some of those to try and distract myself.  Some of these include

-Coloring in my adult coloring books, doing puzzles, or watching a funny show or movie to name some of them.

I think the main thing for people who suffer with chronic pain to remember is that rest is a way that we sometimes have to do more of to take care of our bodies and finding a balance that works for you between  movement and rest.  Until next time Laura.

Getting Medical Care with a Rare disease.

Having a very rare disease like Carpenter Syndrome, I have had a lot of challenges when it comes to treating my condition.  I have been told many times by doctors that they don’t know how to treat my condition and that I need to see another doctor.  My disease requires regular visits with orthopedic doctors and I have had a harder time getting treatment from these types of doctors in my adult years.  I know getting medical care is a challenge for the rare disease community, so I wanted to share what I have found helpful when it comes to finding the right doctor.

The doctors who I have found to be the best are the ones who take the time to listen me and do everything they can to learn more about Carpenter Syndrome.  These doctors are also usually the ones who treat the body from a whole body approach and not just one area of the body.  My advice to those who are in search of a doctor to treat their condition, is to not give up and to keep looking until you find the right one.  

I know it can be very frustrating when you feel like you are never going to find the right doctor, but eventually you will find the one that is right for you. I went to many different orthopedic centers and doctors and was at the point were I just wanted to give up. I eventually found an orthopedic center that was the right one for me.  Also sometimes asking others for recommendations can help as I found my primary care doctor through someone giving a recommendation on a neighborhood page.  My primary care doctor has been the best PC doctor that I have had as an adult as he listens to me and has a pretty good understanding of my disease.

If you feel like a doctor is not listening to you or does not have your best interest in mind don’t hesitate to look for a different doctor.  Having a rare disease means that we have to advocate for ourselves and usually give doctors lots of information about our disease.

If anyone is looking for orthopedic care in the St. Louis area I would highly recommend BJC orthopedic center and the living well center.  I have received very good care for my orthopedic and other needs from both of these centers.  Until next time Laura.

Emotional challenges with having skeletal deformities.

 One of the main things that is caused from my rare disease is that it causes skeletal deformities through out my body.  Growing up I would get a lot of people who would stare and it always bothered me.  My mom always told me that some people would just stare out of curiosity but there were times when I still hated that people would stare.  I think one of the main reasons of why it always bothered me was because I got bullied by some of my peers when I was younger which affected how I viewed myself at a young age.  I think one thing that is important for others to remember is that people who have physical deformities most likely would rather that you ask them or the caregiver your questions instead of staring.  Personally I know that I am open to talking to others about my rare disease and will try and answer questions the best that I can about my disorder to help educate others about it.  My disease and other factors has also caused me to be heavier as I started gaining more weight around my early teen years.  

I have always tried my best to try and do things to lose weight and be at a healthier weight but it has always been something that I struggle with and a topic that certain doctors will continue to bring up of how my BMI is to high.  Sometimes I wish that doctors would take into consideration that my body is structured differently.  MyBMI is probably never going to be what is considered normal for a female my age or height as I have always been short as well.  Constantly hearing that you need to lose more weight and that your BMI is to high has caused me to have low self esteem and have a negative relationship with food.  People with Carpenter Syndrome also tend to carry more weight in through their trunk and forearms as well as have bigger thighs which can also play apart with their weight.  

I am working on trying to love my body more but it is a work in progress as some days it is easier to do and other days I struggle with it more.  Having limitations and having to modify things due to my skeletal deformities is something that has also been a challenge to work through which I will address more in my next blog post.  Sincerely Laura.