Late Night Thinking

It is yet another sleepless night with a lot on my mind. First of all, today is my pup, Chloe's, 2nd birthday! I can not believe she already is 2!! I have been looking through her puppy photos at how much she has changed and grown. She has been a true blessing. She is always happy to see me and is a comedic relief for any situation. She is always willing to share your food with you too ;) I have been through a lot over the last couple years and Chloe has been there along the way. She cuddles with you if your sad, is always happy and willing to play and loves me unconditionally. She doesn't care that I have scars or can't run anymore or that there are times when I don't have a lot of money to spend. She always loves me. I can't imagine how parents may feel about their kids because she feels like mine. I look at her or at a picture of her and I smile from ear to ear. She travels with me and this summer we are going to continue training for therapy dog. She is a great dog and I want to be able to share the joy she brings to me with others. Unfortunately, on her 2nd birthday she will be undergoing minor surgery to remove and biopsy tumors. I just noticed them on the side of her mouth this past weekend. They came up quickly because they were not there a couple weeks ago. I immediately took her to the Vet and he wanted to remove them promptly because they were concerning and recommended having them biopsied. I feel so bad because she is just a young pup! Of course, you begin to think of the worst-case scenario and the possibility of cancer comes to mind. We are hoping it comes back as an infection or virus or benign growth! I can't imagine life without my Fuzz!!

It has been crazy lately with spring semester ending, summer classes starting and preparing for my 8th surgery in Boston. Getting ready for this surgery in some ways has been no different with planning ahead, getting supplies and help in order and setting up all the necessary appointments, etc. But, in other ways it is also very different. This is the surgery to fix my botched PAO from 2 years ago. I will be in Boston at Children's Hospital of Boston with Dr. Michael Millis as my OS. He will be realigning my femur to help with proper alignment of the hip and leg and so that my femoral head fits better in the socket without having to break the pelvis again. I will have a pain team because of my nerve/pain condition and will be getting my first epidural as well as possible block to control the nerves. This is also the first surgery that I have the official diagnosis of Ehlers-Danlos Syndrome, so hopefully that will help in changing the way my incisions are closed so that I can heal better as well as a preventative PT plan that not only helps with post-op, but keeps all my joints in mind. My left hip and shoulder have been in a lot of pain lately because of taking a lot of weight of my right side through using crutches, etc. I have to be careful and protect all my joints, esp since my left hip still needs to be fixed and my left shoulder has dislocated in the past and is becoming more unstable. Prevention and strengthening are key. Of course, this surgery is also in Boston, so I won't be in my hometown of Indy which means my dad and friends won't be able to be there. It will just be me and my mom. Chloe will also be unable to be there. I will miss her so much. I am most anxious about the nerves and my pain level as well as how much this surgery is going to restore my hip. With my last scope I only had the possibility of being at 70% and will be lucky with this surgery if I get to that as well. It is very uncertain because of the complexity of the case what my outcome will be. At this time we are not addressing the labral tears. If the femoral head takes pressure of the labrum a further scope may not be necessary, but it is a possibility of having it scoped again in the future with Dr. Maiers in Indy. It is uncertain at this time what will occur.

As the days go by I get more and more anxious, but I also get excited knowing that this will change my hip and hopefully restore function and reduce pain. I know it will never be perfect or even close, that I will never run again, but I am hoping this will restore some quality to my life. This has been a long 2 years to get to this point and while most are done with both PAO's by this time, I will still be working on fixing the first. Waiting for Dr. Millis is worth it! 25 days to go...

May is Ehlers-Danlos Awareness Month

May is Ehlers-Danlos Awareness Month...

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, as well as some form of skin involvement. The loose (hypermobile) joints are unstable and prone to dislocations, chronic pain, and early onset arthritis. EDS causes fragile blood vessels and organs that can lead to ruptures and can also effect the heart. EDS has no cure or specialized treatment.

This is a great resource for information: http://www.ednf.org/images/stories/leaflets/soyouthinkyoumighthaveeds.pdf

*Please do not use this as medical advice or self-diagnose. Please see you primary care physician or genetic specialist if you think you have EDS.


I have been aware of this disorder for a couple of years because of my bestie, Jessica Anderson, because she has EDS Type-3 Hypermobility type and mixed connective tissue disorder. I have gotten to know the terms, problems and have seen her go through some very difficult times. I have also been able to meet some incredible hipchicks that are also effected by this disorder, such as Jill Murphy. Most recently, Jill has been educating me, as well as others, and advocating for EDS education and awareness.

The more that I learned about this disorder I realized how much it related to me. I did some digging around and found out some more about my medical history, researched a lot of EDS and spoke to a couple of my docs. I have no family history of hip dysplasia, but did read that EDS patients are more susceptible to bone deformities and problems, which definitely made sense in my case. One symptom had always stood out to me was my skin problems. My wounds would take weeks to heal, they would tear open and form abnormal scars. I asked my OS, Dr. Millis, how likely it was that I have EDS and he wanted me to go see a geneticist because it was very fitting. I just had my appointment with the geneticist this past Friday and he confirmed that I no doubt had EDS Type 1 (moderate)-Classical type. Classical type has a lot more skin involvement that includes very stretchy skin, soft and velvety to the touch, poor and abnormal wound healing and abnormal scarring, as well as, some joint involvement, etc. It occurs in 2-5 out of 100,000 people. WOW! I was expecting the diagnosis, but there was things the doctor had explained that will effect the future and how I do things that I had not necessarily thought of. The diagnosis also felt like a puzzle piece that had been missing because of all the problems I had, but no answers as to why.

It has been a long couple of weeks with papers and finals, not to mention all the rain we have had which made the days so gloomy. It doesn't help that I slipped and fell last week nearly doing to splits. A majority of the weight went through my bad "right" hip. I have been in extreme pain since. I did go and see Dr. Maiers yesterday to look at my hip and although there are no new fractures, I very likely could have worsened the labral tear. I am suppose to let my hip rest which is nothing new, but is important since the fall. We are going to hold off on the MRI for right now. I have a lumbar sympathetic nerve block next week and donate a pint of blood the following week as well as get a baseline echocardiogram for my heart because of the EDS and surgery is next month! And of course, it will be a relief once this semester is over!