Exhausted…

As Molly can probably testify, I’m emotionally exhausted. Now that I’m back home, I’ve been tutoring some and have even tried to go back to work. Given how many things I dropped in a four hour period and the fact that I started crying when a coworker asked how things were going, I’ve concluded that I’m not being lazy just sleeping all day. I really need the sleep and time to unwind. That’s why I’ve been incommunicado recently.

What I learned at the Clinic of St. Jude (briefly):

  • I have Ehlers-Danlos syndrome, (type III or IV). It’s not an absolute diagnosis, but I’m convinced. And I’ve decided that that’s good enough. It’s probably the cause of everything that I have.
  • I suffer from hyperdynamic circulation. This is a direct result of EDS, and I now have scientific measurements for this.
  • I suffer from extreme hypermobility. Not only do I meet most of the Beighton criteria, but I also have sacroiliac joint dsyfunction and have winged scapula. In essence, my body is simultaneously falling apart and holding itself together. My sister says that I’m a living jellyfish.
  • I suffer from a central sensitivity disorder. My body is sensitive to things like sound, light, food, dust falling, who knows what and sends out major alarms. Some of these things are internal (like the GI symptoms) and some of them are external; some of them physical, some of them not. It belies simple logic.

The doctors have suggested physical therapy and moderate cardiovascular fitness (while wearing tight-fitting garb) to help with some of this. There’s not a good treatment for EDS yet, and they don’t know a whole lot about it.

I have several consultations scheduled over the next few months, so it remains to be seen what comes of those.

It’s been rough because they messed a lot of things up with scheduling and records transfer and the like. Half the time I felt like I was banging my head against the wall or trying not to throw a huge temper tantrum.

But it’s liberating to have a solid diagnosis and to know that I’m not making this up or that I just need to try harder. I did end up becoming more bossy that I prefer, but everyone agreed that that was to my absolute benefit. And Dr. Leo pulled through for me, advocating for me from afar. My coordinating physician at the clinic mentioned that he had talked to Dr. Leo over the phone and that he seemed “really on top of things”.

That’s the short story. When I’m less exhausted, I’ll probably write more.

Thanks for the continued prayer and well wishes. And happy rare disease day.

Abigail Cashelle

In Which Molly Goes to the Clinic… and We Learn Some New Vocabulary

Alana and OceanBurning have been accompanying me to clinic all week, and I didn’t realize until yesterday how valuable a role they played. Yesterday I was by myself and had two consultations(!!) back to back at the clinic. I hadn’t asked anyone to come with me, so I took Molly with me instead. At first, I was a bit self-conscious about it, but then I figured that anything beat crying on the floor in the bathroom while throwing my cell phone at the wall because Aaron lost his phone and I don’t have any way of calling him (which is my typical recourse for crying on the floor in the bathroom.)

faithful MollySo I brought a bag big enough to fit Molly into, and then I brought Molly with me to the Clinic of St. Jude. I got some strange looks from people, but no one said anything. Most of the strange looks were people thinking, oh, that’s different rather than there goes the weirdo (fortunately.)

And it turned out that Molly was a great friend to have yesterday. I spent over one hour waiting for my PMR consult. During that time period, I would have paced the waiting room floor except that I was really exhausted, and I didn’t want everyone else in the waiting room to have to endure my nerves. Molly and I worked on browsing the internet, reading books, eavesdropping on conversations, skyping my sister who lives in Europe, and periodically bothering the receptionist and asking her random questions. We learned (from eavesdropping) that retired truckers who enjoy driving to Alaska can also be really loud and that grown men who are separated from their wives (but not yet divorced because they’re too lazy to get around to it) tend to also have mothers who are very loud and nosy and accompany them in the waiting room. We would have been more sympathetic if they had not fed our growing insecurity about being in the clinic for (seemingly) pointless consultations. Oh, and by “we”, I suppose that I actually mean “I”. Molly is pretty chill about everything and everyone.

Molly did enjoy the fact that every consultation room at this clinic has a private sofa. (Seriously, some doctors’ offices (like the XXXXL exam rooms!) should pick up on this feature. Anyhow, during the actual consultations, she just sat on the sofa, patiently waiting for everything to be over until I needed her again. The PMR doctor did ask me at the end of the consult if I bring my pink teddy bear with me everywhere. I said, Only when I’ve been in clinic for far too many days in the row and I just can’t handle it any more. He was cool with that, and we were cool with him!

We learned some interesting things in our visit to the clinic. Pieces of the puzzle started falling together yesterday. It seems like we had all the pieces already (or most of them). But we just needed the right people to all put their heads together sequentially to notice that some things actually went together. Dr. Leo was a big help with that, as St. Jude’s coordinating physician kept going back to him to review things and ask more questions about my previous care. I’m really, really grateful for his help with that.

More details in the coming days as I continue to process and think about long-term implications of new ideas. I’m driving back home on Monday, but I’ll still be on leave so I’ll have some time to think, some time to rest, some time to be on vacation, and some time to have wifi without driving around town trying to track it down! (Abigail vacationing without wifi does not a good combination make.)

Until next time,
Abigail

At the clinic

I’m at the clinic now. It’s a bit aurreal. Things at not rxactly going very well because of scheduling rrrors but it remains to be seen how things will pan out pleasep pray

Also my mobile posting options are a bit flawed!

They Keep Saying, We’re Going to Miss You

My coworkers at my new job are warming up to the fact that beginning tomorrow I’m on leave for three weeks while I travel to the Clinic of St. Jude. Everyone says the same thing. I’m going to miss you so much. I’m counting down the days until you get back. We love having you here, and we can’t wait until you get back.

It’s so uncharacteristically different from the ravenous lion. It warms my heart. It’s nice to feel loved and needed and part of a team. I love it.

Happy Valentine’s Day!!!
Abigail

little pieces of news…

– I’m getting used to the greeting “hey, dude” at work. No one has called me “dude” before.

– I gave myself the day off church so that I could get enough sleep to go to work… and then I worked a nine hour shift!! What was I thinking??

– I can’t believe we’re right on the cusp between being snowed in and being in swimsuit season. Weird.

Abigail

Leaving in Eight Days…

I’m leaving for the Clinic of St. Jude in eight days, and besides being really nervous, now I’m worried that I’m not going to have enough time to get everything done on this end. I think that’s a complicated side effect of trying to stay distracted before I go.

Anyhow, I accomplished a few things today that make me feel a little more ready.

I bought this shirt at Old Navy. It’s symbolic for me of my journey and my thoughts on the future!

I bought a new pair of glasses — my first new pair in four years. It’s been a long time coming, especially since my current glasses are about to fall into pieces. Fortunately, the technician replaced the nosepads on my current glasses, so they have a new lease on life. But seriously, how long should one wear glasses where the finish is coming off the lenses? Especially if her insurance covers glasses??? They’re scheduled to be ready in 7-10 days. Let’s hope that’s more like 7-8 and less like 9-10!!

And I bought new nail polish in “sunset bronze“. I’m going for subtle understatement in a Valentine’s color. Plus it goes with the new shirt.

Sense of accomplishment? Check. Status of bedroom?? Aftermath of hurricane Abigail.

I guess there’s still work to be done!

Abigail