a new year, a new diagnosis

Yesterday was my 32nd birthday. I celebrated with a lunch with my dad, a special sushi dinner with my husband and kids, and cake from my boss at the bakery.

And a clinical diagnosis.

I drove several hours to see a geneticist, and after a full family and personal medical history and physical exam, I was diagnosed with Ehlers-Danlos Syndrome – Hypermobility Type.

Part of me is relieved. I broke down in tears as the doctor told me, “This is real. Your pain is real. You’ve been told all your life that you don’t look sick, that you seem healthy, that you must be exaggerating. You’ve brushed it off and thought it must be normal. It’s not.” I have been in chronic pain for years, but have always just dealt with it for the most part, thinking that it was just something everyone had and that I shouldn’t complain. In recent years, the pain has gotten bad enough to inhibit sleep and daily activities, and I started looking for answers. Turns out that my whole life has been leading up to this, and that there is no cure. I have been doing everything WRONG for my joints, and it’s not going to get any better. I can manage my pain and hopefully work on building some muscle tone to stabilize somewhat, but the harsh reality is that some changes are going to need to be made.

No more ballet. It encourages my joints to stretch beyond what they should. I have to really think about everything that I do. Is there a way that I can do this without putting pressure on my joints or without stretching? Is there a way that I can minimize impact? My exercise is going to be mainly water aerobics, swimming, biking (with wrist support) and walking. I have to go get an echocardiogram done to make sure my aorta isn’t dilating/stretching. I have to assemble a medical management team of a rehabilitation/sports medicine specialist, physical therapist, and occupational therapist. I have to tell every dentist and surgeon I am treated by about my disorder so that they can accommodate. I will continue to degenerate.

It’s not going to get better. My kids all had a 50/50 chance of having this disorder. I’m pretty sure that Nine and Three have it. I’ll get them tested, too. While I’m relieved that at least for them, I can minimize damage done early and keep them as pain-free as possible for as long as possible, I feel incredibly guilty for giving them something that is going to cause them inevitable pain in their lives, sooner than it should.

No one should have to live with chronic pain. I am hoping that I can get a treatment plan in place to keep me as active as possible as long as I can be. I am hoping that this disorder does not get in the way of my life. However, it is looking like I’m going to have to think about things like more braces (I already wear braces on my hands) and assistive devices as well as getting my boys to chip in more around the house. I’m going to have to consider the layout and design of my kitchen remodel to help me navigate it with as little trouble as possible.

I’m still coping with everything and coming to terms with this. I am sad about the changes that I’m going to have to make, but glad that I’m still young enough to make them, and that my kids are young enough to avoid things, too.

on positive change

I was always athletic. I played softball through high school, played and later taught soccer, and was a cheerleader in college. I was always strong — I lived and worked on a horse farm as a full-time stable hand, and never hesitated to help my dad with anything he asked of me. Being an only child, and raised to hunt, fish, and camp like any boy, being ‘weak’ wasn’t an option. I was very much of the “anything you can do, I can do better” school of thought.

Woe be to anyone who implied I couldn’t do something because of my gender. In fact, when I first started spending time at Kraut’s frat house in college, I was known to have carried full kegs of beer down into the basement by myself — a witness of such an event told me later that he knew I would turn poor Kraut’s world upside down.

You may not believe it, but that’s me on the top left.

However…having kids changes things. So does aging. I look back wistfully at the things I did as a 19, 20, 21 year old. I think of my body back then, and how different it was. I know that my body now at 30 is a reflection of my life — yes, I’m still stronger than many women my age, and yes I am still in decent physical condition. I am not considered overweight, and I can fit into clothing I’ve always worn. However, there are stretch marks. And there is a little ‘extra’ around the middle that has proven incredibly stubborn. And — most frustrating of all — my joints can’t take most forms of exercise anymore. My shoulders pop out of joint, my knees and ankles are unstable, and my hands and fingers ache. I’m in the process of being evaluated for Ehlers-Danlos Syndrome, which is a condition that causes hypermobility and dislocations of joints. So the things I used to do with ease (even though my joints used to dislocate frequently, they didn’t really hurt) I can no longer do.

Don’t be fooled — this was a 2 mile walk.

Enter ballet. I’ve been told that I have a great deal of natural talent for it. It increases my flexibility and strengthens and tones my muscles, and puts no undue stress on my joints. I LOVE it.

Beginning ballet was a decision I made in an effort to better myself physically. I began watching my calorie intake and making healthier choices. And still, the weight wasn’t coming off. I wanted to get down to 121 lbs, an attainable goal. I managed to easily lose 4 lbs, but was stuck there for over a month.

So, I am making some new choices. I’m going to start taking more ballet classes each week. I’m sacrificing the time with my kids now to hopefully have more healthy years with them later — and to have more energy and ability to be active with them. I’m trying some new diet changes, and am making some big decisions.

I’m starting to make some positive changes…physically as well as mentally.

It’s important to me to maintain the active, athletic person I always was, while embracing the adult mother that I am. I am not ashamed of my body, or my lifestyle, but I do want to bring back some of what I once was. It’s all about positivity, and loving myself. I think it’s the healthiest possible way to begin lifestyle changes. If my only motivation was losing weight because I hated my physical appearance, as soon as the physical changed enough I doubt I’d keep up with the lifestyle, and would begin a nasty cycle. I would guess this is why many diets fail — I feel you have to get the right motivation before making changes, or they’re not going to change for long. Mental health is just as important as physical — probably moreso.

Stick with me, and I’ll share my journey. As cliche a word as that is to describe what I’m up to, it’s accurate. I’m taking my first steps, and I am happy to have company.

Here’s the before — I’m looking forward to sharing my “after”