My Life with Sacral Agenesis: Meltdown (Adobe Photos)

It’s been a while since I’ve written for TDWI which usually means I’ve been facing some sort of medical challenge that prevents me from sitting down and writing. That’s the case now as you will soon read. But there’s more going on. This morning, I had an absolute meltdown.

I often talk about how I am not my diagnosis. I’m so much more. I’m a woman with a really wonderful and blessed life. Even when things are rough physically, God makes it abundantly clear to me how blessed I am. As much as try to be calm and logical as I navigate my life with sacral agenesis, I do occasionally get emotional. And, as I have also said, in order for me to be a happy and authentic person, I have to honestly express my feelings. I need to get angry or mad or sad.

So, why did I throw a tantrum this morning? Well, first of all, I am not a morning person. But honestly, I think it is because I am over-tired and my pain level is pretty high. But most of all, it is because I have not stopped with medical drama since last April.

I started the day thinking, “Okay, what CAN I do today?” About 7 am, I went to the kitchen and made an excellent, balanced meal for dinner. It is something I love to do and I am good at doing. Then, I folded some laundry and put it away. I don’t enjoy that, but I CAN do it. But then, I had an epiphany about all things “Julie”—it felt like I was smacked in the face. I just let loose with my emotions. Whew. I really needed to do that. Now, I can tell you my story.

 

All that medical drama

Last April, I fell in our shower. Rule of thumb: Showers are the most dangerous room in the house because of the water. I just slipped. My feet came out from under me. One foot kicked the wall and then I slammed down on the marble bench landing on my pelvic area where the majority of my spinal surgeries have taken place. I hit my foot so hard that I broke a couple bones in my foot. That was a bummer because I was just starting to walk in physical therapy, so that was put on hold and still is.

Initially, I only had local pain in the area where I landed on the bench. After about 2 weeks, I began having radicular pain in my legs and feet, so I went to see my surgeon. Luckily, he said it was “just” soft tissue damage within my spinal canal. He suggested an epidural with steroids to help with the inflammation. I agreed because the ONLY time of year that is tolerable with my pain is summer and I wanted to enjoy it. I do NOT like any injections in my spine.

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Inadvertently, the injection caused a cerebrospinal fluid (CSF) leak. Then my legs went numb and I couldn’t move them not even a centimeter. I ended up going to a world-renowned hospital with a team that has dealt with my complex spinal situation. When I first went, I thought it’d be a quick outpatient blood patch to correct the spinal leak. But I ended up being admitted for 4 days because of my leg “weakness,” the CSF leak, and other issues secondary to spinal nerve root trauma. The fantastic news is they gave me a lot of IV steroids to try to get my legs to respond again. It was a last-ditch effort, but it worked, thank God. They are still pretty weak, but I know I will get there.

They also performed a blood patch to seal the spinal leak. However, the scar tissue from my prior surgeries prevented the blood from completely “plugging” the hole. That first patch only lasted about a couple days, long enough to get home only to have to turn around come back again. I went back to have the procedure done as an outpatient, but, again, the outlook didn’t look good because of the excessive scar tissue and a lot of other complications. The great news is, after three tries, a skilled interventional radiologist was able to get into the right spot to put the blood in. It got absorbed and finally stopped the leak. I am not sure how many more chances we can take with CSF leaks. The rule of thumb now is no needles anywhere near where they did the epidural in April.

I also learned that I have chronic arachnoiditis where my nerve roots are bundled into balls entangled in scar tissue inside my dural sac. This puts pressure on them and also changes my CSF pressure resulting in spinal headaches as well as pain because the nerve roots are not freely moving in my dural sac, like in most people.

The thing I think that actually upsets me more than losing another summer is the fact they finally figured out that I have lymphedema. It’s basically fluid retention but not water. It’s lymphatic fluid which does not circulate through my body correctly because of all the scar tissue preventing the natural flow as well as medications, such as steroids. The problem is the steroids are necessary. They saved my legs this summer and have saved my spinal cord a couple times before. But steroids have a negative global impact on the body and I’m very sensitive to them.

I have to confess, even though it’s silly, what I’m most upset about is that I won’t get my thin body back and that makes me sad and pretty upset. I know I’m not ever going to look like I did when I was 23…oh, I was so tiny and cute. I’m glad I lead with my smile. Anyway, the most important thing is that there is finally a plan to remove as much fluid as possible, and then I can go back to an intense rehab with PT and OT so that I can walk again.

 

Bring it on again (after a nap)

I’m never afraid of a challenge. In fact, bring it on. Well, on second thought, after my tantrum today, I need a nap and then you can bring it on. That’s me. It’s who I am to the core. I have faced some big hurdles, but I look at them as huge awful “speed bumps” that I have to drive over.

Stella Smooshy faceThere have been some other medical things, too, but seriously, who really wants to know? I gave you the highlights. What I continue to embrace is my husband Mark and my sweet, sweet yellow lab, Stella, who always loves me, even this morning when I cried and cried and cried as she licked away my tears. So, the lesson for today is it is okay for me to swim in my emotions. In fact, after writing this, I wonder why I’ve not had a meltdown sooner.

So, those of you who had read my stories in the past know I always finish my stories with a song. Admittedly, the songs I am listening to right now aren’t all that inspirational, they are more like rage songs. Hey, there’s a time for everything. The one song which I’ve coined my “anytime” song is Ripple by the Grateful Dead. I can’t choose just one line from the song to share with you as I usually do because it is the song in its entirety that calms me down. I think I will switch to Ripple now and enjoy the fact that, hey, at least dinner is done. Thank you, my dear readers, for reading this. I’m feeling better now.



Julie Hemker
Julie Hemker was born with Sacral Agenesis 42 years ago. She has had over 40 major surgeries, her first at age 1. Julie likes to point out, she is not defined by Sacral Agenesis–her life is so much more than being a patient. Julie is the author of our most enduring series on TDWI, "Living with Sacral Agenesis."

2 COMMENTS

  1. Jules- you are amazing. Just amazing. Meltdown and all. We all have them and need them. As much as we hate to admit it. Love you so very much!! Keep on keeping on!! And making dinner at 7:30 in the am?? I knew it all along, but damn, you really are a rockstar!!! Xoxoxox sweetheart. Katie

  2. Hi Katie,

    You’re a doll! I’m not a rock star silly! Yeah, the dinner at 7:30am was insane. I mean it was done which was cool. Yeah sometimes I need to vent and be a little expressive. I call it “situationally aggravated.” Ha! Girl, I send super big hugs and thanks for being such a great friend.

    Happy Pizza Day!

    Hugs,
    Jules

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