Hey loves, it’s been a minute. I should have written five days ago, but I was exhausted.
*anything in bold is specific information for those looking at guidance.
On May 6th, I received some not great news from my PAO surgeon in West Palm, FL. I had been up since 4:45am and when the personal assistant put up my new X-rays, I knew it wasn’t good.
First off, just taking the X-ray was awkward. My already skinny frame has dwindled. My leg is like a stick, and whatever body parts used to be boney before are now extremely boney. When they helped me lay onto the X-ray machine, my tailbone was killing me. Then, as the technician was trying to find my hip bone for imaging, he made this confused face and looked at me.
“Do you have something here?” as he was lightly touching my hip area.
I gave a little chuckle. “That’s my hip bone.” It legit feels like I’m smuggling a box in my pelvic region. It is just SO HARD and boney.
Anyway, as my father and I waited for the surgeon, I knew there was trouble. When he finally came in, it’s as if he was mockingly celebrating my perilous news.
“Your hip isn’t growing!” or something along those lines, he declared.
The X-ray showed minimal bone growth. I was devastated. He asked me if I was getting enough sun. I told him “No, but I have been taking 10,000 IUs of Vitamin D3K2.
“No, you need sunlight. You can take all the Vitamin D you want, but if you aren’t getting sun, specifically on the backs of your arms, you’re not going to activate it in the body.” He then made some joke at my expense of living in Florida but looking like I was ready for winter (pointing to my white legs and blanket I was carrying).
He said I needed to be out in the sun, arms out, for 20 minutes a day.
“And we need to get you moving!” he proclaimed, proceeding to hit my bad leg. He said I needed to start putting up to 50% weight bearing on my left leg and get myself moving around. I was a bit confused since first it was rest, your bone needs to heal. Now it was your bone is barely healing, but let’s get you up and about. However, it was then clarified to me that weight bearing can also spur on bone growth.
He further stated that they would get me in touch with someone who had a machine that would possibly help generate bone growth.
“You’ll wear it twice a day for 20 minutes on your hip. You’ll get a call,” he said waving his hand as if to say I’ll get more information later on. By the way, I have yet to receive that call and not for lack of trying. I’ve emailed them twice about it since then — one email receiving a response while the second just went ignored. Not the happiest camper.
However, during my orthopedic appointment from my labrum on May 11th, my doctor stated he felt the machine was hit and miss. He made me feel a bit better about not having it.
“Are you smoking?” he asked, concerned. “Definitely not. I even stay away from other people smoking. And I haven’t had a drink since Valentine’s Day.” He was trying to see why my bone wasn’t really growing, but who knows at this point.
My other condition, TSW, has probably played some hand in my slow recovery. All the nutrients in my body must be so out of whack. My skin is flaring and has made everything that much more difficult to work through. An easy task of standing out in the sun isn’t always easy with someone in my position. My skin is so sensitive, but we do what we must.
I am still doing my leg exercises 2-3x a day. Weekdays it’s harder to get all 3 in since I work. I was thankfully working from home for two weeks, but my school couldn’t allow it any longer. It gave me some respite. Today is my first day back at school on crutches.
The first week of trying to use crutches was interesting. I felt so lopsided. If I fully extended my left leg to the floor and put a little weight on it, it felt like I was crooked. It took a full week to finally feel a little more balanced.
One thing that is bothering me is my scar tissue. Once I am cleared to do physical therapy in June, they have my full permission to blast that area. Make me cry! I just know the scar tissue is what is causing some of the pain and pulling/tension I feel. Everyday, I use Vitamin E gel on the area and massage it for about two minutes. I do circles clockwise and counterclockwise over the area and then up and down the scar line. Both doctors agreed that it was good to do. I should probably try and start doing it more often. You never want to allow that area to become too sensitive or hardened. It can restrict movement in the future and becomes harder to break up after awhile.
My PAO scar is a bit sensitive, especially if I wear a thong and it sits on top and rubs on it. It usually only happens if I’m wearing jeans, but it happens every so often in leggings. My surgeon’s assistant told me there were 3 layers of sutures underneath, so that is probably why the area feels so strange. I don’t massage this scar too hard as the area feels so boney, but nevertheless, I give it attention.
I hired a nutritionist to help me along the way of recovery these next six months. I am awaiting my blood results to see if I am lacking certain nutrients, as well as taking a detailed look at what I am eating everyday. I am on a high calorie, high protein diet. I lost some weight and I know my body is crying out for help. I have a thigh gap, ya’ll. I’ve never had one of those — at least not since elementary school.
My left foot also still has a different color at times than my right foot. It gets cold, which also may be a sign of poor circulation and in turn could be a small part in why my bone isn’t growing.
Other than that, nothing too new to report. Just fighting the good fight! Trying to stay afloat with TWO health issues on the mend.