Rainy Day Rant

Someday I'd like to believe I won't have to apologize for the length of time between posts. (Absence makes the heart grow fonder?) I am sorry, though. My dear Puggle (AKA my sweet daughter) had a few rough months, but is feeling better. Nope, I haven't updated her blog either. She does have a CarePage, so if you want to stay slightly more up-to-date on her medical stuff, send me an e-mail. Now let's get to it.

I wrote an entire post about my ankle fusion, which went off without a hitch on April 28^th. I'd like to think it was informative, so I'll probably post it sometime in the near future. (I'm guessing some of you have bad ankles, too and might like to know a little more about the whole ordeal. Short synopsis: it wasn't so bad. I think I'm in more pain from having been on crutches for 19 days than from the surgery. I may have a different opinion once I start walking on the screwed-together ankle, I suppose.)

But for now, I have an entirely different agenda. If you'd like a totally feel-good post, you might want to read elsewhere. I may have mentioned earlier that I'm not always a most cheerful person. Although I've brightened up considerably since my emo-ish adolescent days, I don't quite fit in with the other PTO moms. And if I were to pick an alternate title for this post, I'd borrow the words of a bendy friend and go for: “Dear EDS, Fuck You.”

I'm not sure if it's the 19 days of hobbling or the 3 days of rain or the 2 sickly children, but I've had enough. I've had enough of the damn cast, the hospital bed, the feeling of impotence as I watch my family live their lives from whatever seat I'm consigned to at the time. I miss my bedroom, located on the unattainable 2^nd floor of our house. I miss the time when traveling from the living room to the kitchen didn't require prior planning. I miss feeling like a contributing member of anything.

I went in yesterday and had my stitches removed and a new (hopefully final) cast put on my ankle. If all goes as planned, in two weeks, I'll be out of this cast and back in a walking boot (although there will likely come instructions not to do much walking.) This will give me the freedom to climb stairs, carry the Puggle, and do a whole lot more without difficulty (drive, shower, etc.)

Why, then, can't I just look forward to the nicely-fused, cast-free future (i.e. May 31^st @ 9 am, not that anyone's keeping track)?

Because EDS just hasn't given me a break—EVER. Every time I thought, “This is it; I'm done,” out popped some new symptom to be dealt with. Dislocations or pain or dysautonomia or migraines or seizures or reflux or medication intolerance. It's been a long time since I've felt like ME...sometimes I don't even know how that's supposed to feel anymore.

Then again...just when I've resigned myself to a certain level of disability, hope does seem to shine through. Last year, I thought I was wheelchair-headed for sure, but now I don't know. I managed to walk pretty well for a while this year. My new knee brace is promising. My new ankle is promising. I finally found a medication that stopped the headaches. And while I may not be able to eat bagels, my stomach and I are on slightly better terms than we were last year.

So here's the truth—I'm scared. I'm scared of what the future holds. I'm afraid of failure. I'm afraid I will never be able to stop crying.

That may not be very encouraging for those of you who are newly diagnosed or wanted something uplifting, but that's the truth. I want a life that is more than a collection of diagnoses and a laundry list of (failed) surgeries. I want a life in spite of it. I have 4 children who need me. When I was first told I had EDS, at age 19, it meant little to me. It explained my crazy joints and rationalized a shoulder fusion. I had no idea how great the impact would be. I don't think my doctors knew. Ugh. (And if they could see me now!!)

A rheumatologist I saw had this to say about EDS:

“We used to call EDS 'Benign' because it doesn't destroy the joints in the same way as say, Rheumatoid Arthritis, does without treatment. We no longer call it benign because while it may not destroy your joints, it destroys your life.”

True.

But while I'm glad ecstatic for the understanding, and while I am afraid of what the future holds, I refuse to let EDS destroy my life.

And while I don't knock any of the following, I just wish there was treatment besides writing, crying and camaraderie. And joint fusion.

-Xan

P.S. I will have better things to write about in the near future. So thanks for reading and I'd by honored if you continued to do so!

Good Bones, Bad Bones and My Beef with Winter

I saw my ortho doc on Tuesday for the monthly shoulder check. In the beginning, I think he was just waiting for something to go wrong, but now 3 months after surgery, my shoulder is starting to feel better and the bones still look good. This time he also wanted to get x-rays of my ankle, which has been causing me a great deal of pain lately.

General verdict was that although the ankle x-rays looked good, bone-wise, the instability and pain aren't just going to go away. Fusion is still my best bet, as the one orthopedic procedure I've been satisfied with throughout all of this is my shoulder fusion. I told him I wanted at least six months to think about it; he offered to get me a better ankle brace while I figure it all out.

If only things could ever go as planned.

Winter is here in New England. On Tuesday, a sudden dip in temperature turned local roads and sidewalks into sheer ice. Unwilling to risk life, limb or child, I was quite hermetic between mid-day Tuesday and Thursday afternoon, when I had to drop my car off at the dealership for some repairs. By that point, most of the ice and snow seemed less hazardous—or so I thought until I slipped on the way out of the auto repair shop. I landed in a heap on my “good” knee, twisting my “bad” ankle beneath me. Despite being a little banged up, I felt less hurt than I was mortified and quickly regained my composure in order to right myself.

Getting up was worse than falling. As soon as I stepped on my ankle, I could tell it was bad, even through my snow boots. I usually have pain, but enough stability to walk in a brace without dislocating. Now it seemed, my ankle was clunking in and out with each step. (Cam was so disgusted by the noise that she all but forbade me to walk.) When I did walk on it, I immediately saw stars.

Back to ortho doc. (2 appts in 4 days: not exactly the sort of record I'm going for.) His words: “I've never seen anything like this.” With EDS, I get that a lot. Nothing fractured or dislocated, but Tuesday's “good looking bones” now had remarkably more joint space. Not surprising that the bones were sliding around much more than usual. Ortho doc's hope is that the fall caused some bleeding and swelling which temporarily worsened things; my fear is that I'm going to be stuck this way until the fusion, which I didn't want to schedule hastily.

For now I'm back in a walking boot with a rocker sole, so at least the audible clunking and associated waves of nausea have subsided. My fear of requiring emergency surgery, at least, was allayed. The boot allows me to walk and keep up with life, a privilege I don't take lightly.

Really hoping that the snow/ice/freezing part of winter is over. Please?