Everything hurts and I'm dying

Two weeks ago, while Ian was at hockey practice, I walked out of the rink and crawled into the back of my SUV to lie flat on my back. My entire left upper quadrant was in pain. I had strained my shoulder doing squats earlier that day in the gym. I hurt my shoulder on Leg Day.

I called Shrop in tears. There wasn't anything, in particular, he could do other than come over and rub CBD oil into my deltoid. I sobbed to him that since my pain tolerance is so high, I'm not even sure how bad this pain is. It could be debilitating to others, but I was still driving my kid to hockey and cooking dinner. I just hurt the entire time.

I left an emotional voicemail with a local physical therapy group. I got an appointment for the following Wednesday.

I met Laurie, the clinic director. She asked if I could touch my toes, and I flat palmed my hands on the floor. She actually recoiled. "That's not what we want. Your hips didn't actually move that much. You're just stretching everything else to get to the floor. You might even be able to touch the floor below this one." We also discovered I could fold my thumbs down to my forearms. Those were some of the tests on the Beighton Score to measure for Hypermobility Spectrum Disorder.

Two examples from the Beighton Score. One showing a thumb folding back and touching the forearm. The other showing a woman bending over with straight legs, bend elbows, and flat palms on the floor

She can't technically diagnose me as hypermobile because it requires a blood test, but she did say I'm definitely extra-mobile. Other symptoms include slow healing, easy bruising, poor coordination, jaw pain, and joint dislocation. Additionally, some people have comorbidities of fibromyalgia, myofascial pain, and arthritis.

Her goal was to give me stability. Because my connective tissue is too stretchy, it can't keep my joints together as well as it should, and I can very easily get out of alignment.

I told her I lift weights and do yoga as well as receive deep tissue massages. She told me I shouldn't do yoga because it will make me too stretched out. She said lifting weights is bad because my body will use the wrong muscles and I can do damage. She also said the deep tissue massage may feel good for a few days but won't correct the issue, so I'll rebound and feel worse later. This was all very discouraging. All the things I enjoy don't help me and possibly do me damage.

Ceramic plaque outside Laurie’s exam room: “Everybody’s entitled to a little hissy-fit now and then.”

I got on the exam table and she tested my hip movement. It was almost non-existent. She could put her thumbs on the side of my left hip and push, but nothing moved. It was like I was nailed to the exam table.

She started with a hip extension exercise for me. I put about three pillows under my left hip and then draped myself sideways over them for five minutes. Tears of frustration streamed out of my eyes and down into the little face hole on the table.

Hypermobility is a chronic condition, adding to my other chronic illnesses of diabetes, hypothyroidism, and Hashimoto's. I have to remain vigilant regarding how I move and perform regular maintenance on my body. Even with these measures, it's a giant hassle. The smallest misstep causes me so much pain for so long. I had done a lower pec exercise about three weeks prior and hadn't been able to sleep on my left side since then, despite not having pain at the gym.

After two and a half hours at the clinic, I was set free with a hug from Laurie, some exercises for home, and a schedule to come back twice a week. I could come three times a week, but only if I wasn't doing any other exercise. There was a lot of concern about my breaking something. I felt like a rag doll with loosely sewn seams.

Out of stubbornness, I decided to keep going to the gym, but not go hard. I went to my second physical therapy appointment two days later on Friday and met Michael. He did a lot of cupping on my upper back and a little on my lower back. The lower back didn't react much, but the upper back really brought out the octopus attack look.

Image of Genie’s upper back covered in 3” diameter purple dots from cupping.

I felt better after that visit. My hips are twisted. My left hip is forward and down; my right hip is backward and up. It's cute in a dance move, but you're not supposed to stay that way 24/7. Since my ligaments are made of warm Play-Doh, I end up staying in that position, and it affects my upper body. The twisted hips explain why my left trapezoid and lats are trashed, and I can barely turn my head to the left.

There's a joke about how bisexual people can't sit in chairs correctly and I'm living that stereotype. I noticed over the weekend that when I slid up into the Suburban's passenger seat, I never finished getting in the car. I just stayed on my left hip, twisted towards the side mirror as if this were a reasonable way to sit. If I felt fancy, I'd tuck my right foot up onto the rigid side door pocket or under me. It’s a miracle I can use any seating device properly.

Instagram image from July 26 showing a sketch of what a “Bi-Chair” would look like. “Designed for people who can’t sit straight.” Done by mamatiazi and shows and example of how the person would sit with right arm at shoulder height, left leg tucked …

The good news is, I'm making progress! I've done some basic hip exercises and I'm starting to straighten out! Laurie told me today that I've gained a lot of control and stability.

We worked on a particular exercise this afternoon that made me pull my left hip back and down. I would do the movement, but it wasn't engaging the right muscles. My right leg was determined to do all the work. We finally got me adjusted precisely how I needed to be so that I could feel the correct muscles engage. And it's better!

Laurie asked me how I was feeling today. I told her I was much better. "Overall, I'm at about a two in pain. My biggest complaint is my right elbow. I hurt it untying my shoe last night." Because that's totally a thing to damage oneself untying your shoes.

She dug her fingers into my elbow for a bit and that helped. Then she dug around in the space under my right clavicle and above my top rib for about 10 minutes. Eventually, it gave up, allowing me to turn my head to the left more.

I was in a lot of pain two weeks ago. One week ago, I was utterly overwhelmed with data about yet another chronic thing for me to manage. Today, I'm feeling better. The physical therapy is helping. I have some friends to help me with resources and support (hi Jenica and Lisa!).

I'm tilting my pelvis forward and "tucking my ribs into my pockets." My right leg is a little straighter. My "shoe elbow" is still sore, but it will get settle down eventually.

A blog by any other name

It's been a minute. I've been noodling around on Facebook, sure, but I haven't really sat down and written a chunk of words. I've felt a little jammed up because of it, honestly.

Every month, I take all the random things I've shared about Ian and copy them over to a blog post as a separate archive. I have a Google reminder on the first of the month to do it. Last month, I noticed my blog wouldn't load with the domain name, but since I needed to log in anyways, I assumed my DNS was being dumb and ignored it. If there were a movie about all this, that would be the point you'd hear dramatic foreshadowing music.

I was about to archive Ian's September quips a few days ago when my friend (Hi Mary!) messaged me and asked if my blog was still up. Her RSS feed had switched to some wedding invitation site.

There would be more dramatic music here too — something from a Lifetime channel movie.

When I logged into GoDaddy, I discovered my domain name was gone. They had been trying to tell me for several months that my credit card was expired, but all those notifications were going to an email I never check. On September 3, they released my domain, and within the month, someone else bought it.

My stomach sank. My heart started pounding. No. No no no no no. This isn't happening. I took care of all this. I paid for five years when Rich was sick so that I wouldn't have to worry about it. Well, time flies.

I considered calling GoDaddy support, but I was too emotional. I was sobbing at my desk at work, so live chat was the way to go. The only option I had was to have GoDaddy notify the new owner and see if they would sell it back to me. But GoDaddy charges $69 for that service plus a 20% commission on whatever the selling price would be. I knew the wedding invitation people weren't going to feel sorry for me and give me my domain back for $17, so I decided to let that go.

Ok. This is fine. I can do this. It's a new era — a clean slate. I use Genie Alisa as my name everywhere, so it would make sense for that to be my new domain name. And geniealisa.com is available! Things are looking up.

The service rep told me that geniealisa.com is a "premium domain." That means it's a dot com address, the name is less than 15 characters, and it's unique, so it's more desirable. Adding to that, someone had already purchased that domain and was holding it with GoDaddy. So I would buy it from that person through them.

How much would that be? Oh, just $3795 to purchase it from the squatter plus $17.99/year for the premium domain.

Service rep gave me a price quote for geniealisa.com and my response was HAHAHAHAHA no thanks

As I later told her, that price quote was the only thing that stopped my sobbing and exchanged it for guffaws of laughter.

Screen cap of convo with service rep where I thank her for the price quote because it stopped me from crying

GenieAlisa.org is only $11.99/year. I'm more of a non-profit kind of gal anyway. I paid for five years, updated my contact information, updated my credit card information, added text notifications, and put my checking account as a backup payment method. I'm not going through this again.

Thankfully, all the content is safe. I just had to change my address.

It got me to thinking about why I have this space. Couldn't I use Facebook or Instagram or Twitter or whatever? But when I write here, it feels different. And while I've been sharing up a storm, it hasn't been on this platform. Hence the feeling jammed up.

I lost a domain name that I've had for a very long time. I don't want to count the years precisely because it might make me cry again. But I didn't lose the content. And most importantly, I didn't lose my voice.

Throwing leaves

I suppose I should have posted this yesterday on Valentine's Day, but I wasn't feeling it then. And it's #FUFebruary, so I'm doing whatever the heck I want.

One of my favorite guilty pleasure movies is "George of the Jungle" (starring a shirtless Brendon Fraser). There is one scene in particular where Ape the ape is giving George advice on how to woo Jane. It involves beating his chest and puffing out his cheeks.

George wooing

George wooing

When George returns unsuccessful, Ape regards him over his glasses and says, "Are you certain you threw the leaves?"

Are you sure?

Are you sure?

The scene stuck with me. It was a joke between me and Rich and I've taught to others.

If you are trying to woo someone, it's best to "throw some leaves." If you're not sure if they noticed the leaves, you can point it out. It also helps to clarify if you're not sure if those were leaves.

You can use it over text messages too.

Throwing leaves

Throwing leaves

So that’s my gift to you all. If you’re trying to attract someone, beat your chest, puff out your cheeks. And make sure you throw some leaves.