JFK Award given to this FIGHTER!!!

I don't know where to start or finish, but it has been a long and heart breaking road to get this dislocating zebra through middle school and then highschool. This month, her school recognized her by giving her the most distinguished JFK award for courage. Her peers shared a bit of her EDS story before honoring her with the award. I can't say much more now, because...tears...
Enjoy this beautiful moment from a zebra who is feeling her very strongest in years.

9 days no walking

What starts innocently as one day of extra walking followed by a double ear infection and cold seemed to snowball into inability to move for excessive hip subluxation and once that started, and once the movement stopped, no progress was made for 8 days. We saw the orthopedic surgeon who told us what we already knew, which is that you have to move! Even if it hurts. And it hurts.
So, PT in the water is advised. Of course, we have done this and we can do it again, but it is not easy to find the 3 hours a day it takes to manage this in our lives of work and school and obligations. But we will do it because it needs to be done.
What is different this time? She is afraid she can't get in and out of the pool, so we'll be using the chair that lifts you in and out. Once in the water, I suspect she will do fantastic! Getting out, and being cold in Chicago winter will not be ideal, but we'll do our best to dry and bundle.
The other thing that is advised is a new (for us, anyway) MRI that views the full spine and only takes 45 minutes. That is a huge time improvement from when Bean did this years ago and it took 3 hours or more. The reason for this MRI is that Bean has numbness and tingling in her legs as well as feet and hands. She has had this for a long time, however, and I don't suspect that they will find anything that we don't already know, but it is wise to make sure there is not something going on that needs addressing. So, MRI time.
School has been missed and will continue to be missed and we all will long for warmer days and mobility.

Walt Disney World Thanksgiving Trip From the Wheelchair

I will come back with more tips, but the MAIN tip I can give is to PLAN ahead! Fast passes are an absolute must for someone with chronic pain to manage these parks, and especially during high volume days such as Thanksgiving week! But here is a preview from the wheelchair. Enjoy my child's creative montage! 

EDS Slowing You Down, Too?

Feeling like EDS (Ehlers Danlos Syndrome) is slowing you down? Yeah, we get that! Quick update, to start the school year, Bean had good mobility, all in all, but this past week has been back in the wheel chair. Now we have a break for Thanksgiving and we are hoping warm weather and low stress will be the perfect combination to get back on track...fingers crossed! #ehlersdanlossyndrome

Reference given for the Physical Therapists

While visiting the experts today at Advocate Lutheran General Hospital, we were given a packet to pass along to the local Physical Therapist that we will see once we get home. The packet is from Cincinnati Children's Hospital, but given to us from our Chicago group. This is for our new PT, who is not an EDS (Ehlers Danlos Syndrome) specialist, but who is comfortable working with patients who are hypermobile. If this is of help to any of you or your medical team, please download and add to the file. It is recommended for a variety of medical professionals, just click the link for the packet below.


Download the pdf online, here: Identification and Management of Pediatric Joint Hypermobility In children and adolexcents aged 4 to 21 years old
Published October 21, 2014

From High School to College?

Bean's 9th Grade Art Project

If navigating the smaller scale of a middle school was too much and conquering a high school proved to be an obstacle, how on earth will a person with EDS manage college?
That is the question we are facing, now. This is the time in the high school process that kids begin thinking about college, planning for tests, thinking about narrowing down a future.
While this is not easy for any teen, I suspect the difficulty multiplies with Ehlers Danlos Syndrome forcing itself into the mix. As a parent, some things that I am focusing on are to encourage my little zebra to seek her interests and to look toward a future. That is the key takeaway. Even when facing these obstacles, the future will hold joy and it is worth pursuit.
The second thing I think about is a school that is near home. It is unrealistic to think that Bean will be fine in a dorm without help that is very near by. So, close to home. We are lucky in Chicago area as there are many great schools right here. Great.
Third, size of campus and accessibility are very important. There will be times when a wheelchair will be needed and in winter in Chicago, not all campuses will be manageable. Some will come out as clear winners for their thoughtfulness when it comes to accessibility.
We will be talking with the school support about this process and attending college fair for disabilities. In addition, we'll get to a point where we narrow down the options and when we do, I will come back and share. I would love to hear from you to know what has been helpful in this process!

What does hypermobility look like at 39?

I can recall with vivid clarity that it was a fall morning and I was putting my arm out to stretch when I heard a pop. My neck was "out" for lack of a better term. The pain was unlike any I had ever experienced and I could not turn my neck to one side. At 14 years old, it was hard not to panic. I received help from an osteopath who was able to adjust whatever had moved out of it's normal position, but that was the start of a lifetime of neck pain and problems. Now, at 39, I am used to having an ongoing level of pain in the neck and shoulder blades. It wasn't until very recently that the pain increased in both duration and severity to the extent that I sought some answers.

First, there is the previous mentioned rib subluxation issue, which I have managed to get under control through physical therapy and changes in overall posture and use of my muscles. The pain at the base of my skull, top of my neck, however has been such a struggle. When that pain sets in, it moves into my head causing migraine type headaches. Again, this has been happening for so many years, I have learned to live with it and cope, but lately, the length of these headaches has been expanding to a week or two or even three out of a month! Starting with x-rays, the doctor said it is just mild degeneration and early stages of arthritis. She agreed that physical therapy could help.

I had to take a moment to let it sink in that the increased duration of pain I was experiencing was only a MILD arthritis and that I couldn't even imagine what late stage arthritis pain must be like. Scared, I went quickly to the PT and asked them to help me change my life. Hypermobility has always been the diagnosis I have been told from teenage years to now as to why I am experiencing the issues in my neck and back. I didn't know what EDS was when I was in my teens or twenties, so I just understood that I was hypermobile and that was that. Now, nearing 40, my body is stiffening, POTS symptoms are under control, and yet there is still hypermobility, and the PT let me know it was quite significant in the neck, likely adding to the issue.

They started me on some exercises that were basically chin tucks and head isometrics (though if you follow the links, don't jut your chin out so forward as the girl in the video). I was a little disappointed because I didn't see how I would be able to change my life one chin tuck at a time, but each session they have given me more challenging, but doable, exercises for my neck, shoulders, and to open up muscles that have tightened through the back and chest. For the first time I am honestly doing my exercises every day. I don't plan to ever stop because I have learned from Dr. Tinkle and the team at Lutheran that physical therapy and strengthening of the muscles with proper form is the key to helping hypermobile joints.

My mother is in her 60s and her arthritis is well beyond mild stages. She has chronic pain and tightness to the extent that she requires a neck brace quite often to do her daily activities. Her activities, however, are limited due to the extreme chronic pain she is in. It is my hope that in actively adding these exercises to my daily routine, I can avoid that level of suffering and maybe it is not too late for my mom to find some help in her own PT movements, too.

While my child has such an extreme case of Ehlers Danlos Syndrome as to disrupt her life every day with dislocations and subluxations, I have lived long enough to know what a pain it is to deal with the hypermobility even in its less extreme form. I hope to come back to this post in 6 months with a new found strength and be able to report that I have been free of those blinding headaches that start from the base of the skull and top of the neck and that I found a way to help mobilize those misbehaving joints and put them back into working order. I hope to tell you that 40 is the best year of my life for back and neck pain and I hope to credit that to the exercises and proper alignment techniques I'm learning along the way. Wish me luck!