I joke about being Gumby like, but sometimes it gets a little surreal.
In the past month I’ve:
- Seen two consultants
- Been prescribed a joint anti-inflammatory which, although promised that they would both work and make me woozy, I can say that they have as much effect on my joints and my mental clarity as eating Pez would, and Pez come in a way more interesting box
- Paid £77 for wrist splints that my insurance company don’t pay for, as they consider splints “cosmetic”
- Been told that there is evidence that arthritis has set into at least one of my dodgy joints which, um, YEAH. I know.
- Had two exams
- Had microsurgery (again) on my jaw (again)
- Had one X-ray
- Had two MRIs
I wonder at what point I’ll start glowing in the dark. Particularly because in the next month I will:
- Be seeing three consultants
- Having one more X-ray
- Probably having another MRI
- Almost certainly be having at least one more procedure
- Although it’s likely I’ll be having at least two
- Potentially even three
OK, those last two bullets didn’t really follow grammar structure but they were really there for impact.
Let’s break it down and since I’m feeling very bullet-pointy, I shall carry-on thus:
- My wrist has not improved and once I get to the end of the day my wrist curls up numbly and sits in my lap, aching. I can’t remember what it feels like for it to not hurt anymore. I can’t remember what it feels like to slice vegetables, or grate cheese (even with my “cripple cheese grater”), lift a bag of heavy groceries or use a corkscrew to open a bottle of wine (yes, I know there are screw-tops, but man cannot live by breaking the neck seal alone). I have an appointment in three weeks to see the wrist consultant again. I don’t know what they’re going to do, although I suspect it has “cosmetic splint cost” involved.
- My neck has started to go. Years and years ago it was injured by a doctor who was convinced my migraines were due to a mis-aligned spine, so he deigned to fix it for me. He failed, and in fact I was in such excruciating pain I had to see another doctor to re-align my neck. The first doctor folded his practice not long after (due not to me, although I think I was not alone in his malpractice). Every morning I have to pop it fully back into place – it sounds like a zipper and feels like an exquisite neck-gasm every time I do this.
- I’ve been back to the ankle doctor. My original surgery has held, but I am unable to walk down stairs unless I do it flat-footed, I can’t flex my foot. He examined it, and believes that I probably have a piece of bone (!!) in the joint (!!) due to a fracture (!!) at some point (resisting the urge to use double-exclamation points here, because really my grammar has gone to the dogs). My MRI today was for this purpose. I’ve become such an old hat at MRIs that I fall asleep almost instantly on those noisy tables now. If there is ankle surgery in my future it absolutely has to wait at least a year – due to our jobs I cannot afford to be stuck at home and have Alastair do all the driving. We both are on programmes with absolutely specific, utterly-unmissable deadlines, with his deadlines even being down to the minute. I can’t discuss what we’re doing, but trust me. Our schedules simply cannot accommodate one of us being out of action and the other one doing all the driving. I’ll just continue to look like a dick as I walk down stairs. I’m ok with that.
- My jaw had microsurgery last week. It hasn’t taken. I didn’t think it would. It’s also my jaw which has arthritis set in, and rather grimly I agree it has. Next up: pirate surgery, I guess. My craniofacial consultant is a lovely man and I really like him, and as he was so keen to try the less invasive procedure again (just in case) we went with it. I don’t know, something in me just suspected it wouldn’t work, and sure enough…I can’t open my jaw all the way without working it open in stages, to get the joint to move. You may ask “Well, why do you need to open your mouth all the way, anyway?” to which I reply: “Ever tried yawning without opening your mouth all the way?”
- Pause while you follow through with my blog post-instigated yawn –
Yesterday I pranged the car after dropping off the kids at nursery. A Land Rover rushed me, I over-corrected and scraped the car against the school gate, denting the door and ripping open a tire. I dropped it off at the garage which fortunately for us, is around the corner from our house. When I went to pick up the car, I walked out of our house and started on my way. A few steps outside of the house and the skies opened and rain poured down. I thought about it – I could go back and get an umbrella. Or…
I went with the or.
I took a deep breath and ran. I ran and ran and ran. I let my legs go, my ankles go, my arms pumping. I ran to the garage to get my car, every single part of my body very alive at this one activity, this one thing that I’m not meant to be doing. I grinned and said to myself “Run, Forest, run!” and ran as fast as I could. I got to the garage with this feeling of giddy elation, wishing it was further away so I could keep running while at the same time knowing this forbidden activity was forbidden for a reason.
Life can be limiting. It’s only going to get more so as I move forward. So I’ll take the little moments when they happen.
-S.
I now can’t stop yawning. Thanks. :)
love that you took that moment!
For some reason I enjoy these posts. Believe me if a stranger came up and listed their ailments I’m sure I wouldn’t be as interested but a) been reading your blog forever and feel like I know you and want to know what you are dealing with and b) oh my goodness what you are dealing with (falls off chair). It’s amazing how you live your life with your condition. You never complain, just list the ailments.
I’d be happy to open your wine anytime, if I lived you know, on the same continent. BTW, I have horrible grammar but thanks for reading and secondly, still miffed how that doctor treated you and your daughter. Grrr.
Sometimes you just gotta live – and if that means running like a madwoman, so be it.
Your cosmetic splints comment had me thinking about Wonder Woman. Sure, her wrist splints (golden bracelets) repelled bullets, but they also looked awesome. Do these insurance companies think that velcro is the height of fashion or something? Or perhaps your splints need to repel bullets. Not sure.
Be well, lady.
Ms. Pants is about to move out this weekend (after 3 months of post surgical care, radiation and chemo). As soon as she’s settled back in her life, you can all move in here and I’ll take total care of you. The kids couldn’t possibly rival the mess and antics of the 7 cats that have been here, I know how to do everything for the one who needs care, and Papa Pants would be delighted to have some male company in the house. I wish I knew magic and could make it all better.
I have had moments where my jaw was out of whack and I couldn’t yawn properly. And for the last 8 months, my neck has been f’ed up (due to slow-healing whiplash…sucks to get old), which also interferes with the yawning. And all my joints snap, crackle, and pop. So, I have much sympathy.
And the running feels so good sometimes…
What Judi said.
OH I can just imagine the exhilaration! Before reading your blog – I had no idea what EDS was. Now I’m massaging my jaw in sympathetic pain everytime I think about it. At the risk of being branded weird, I’m going to ask – have you tried any alternative therapies? Just a question based on interest, not one based on my assuming that you’re a established medicine only kind of gal. I was meaning mainly in terms of for pain relief etc.
I’m going to send you some links to some research about neck stuff in EDS patients. Unfortunately, I’m not sure if anyone in the UK is actually doing surgery to work on these things (I just had surgery to fuse part of my neck due to EDS issues and it’s made a huge improvement to my quality of life) as only a very few doctors in the US are and I’m not sure I’ve heard anything about any of it happening outside the US. If your EDS consultant is Prof G, he should be aware of these procedures since he speaks at the US EDS conference where some of this is presented. I wouldn’t say “you need surgery”, but it might be something to bring to the doctors to see if they’ll at least evaluate you. I’m point blank refusing any joint surgeries at the moment because I’ve seen too many EDSers have to redo them constantly because they fail so quickly, but the ones stabilising my neck, I’m willing to do. I had one surgery on my neck and will probably eventually need another one, but hopefully not for a few years. I’m not quite 3-months post-op and doing quite well.
I’ll be interested if your wrist doctor has suggestions, especially if any of them are not bracing. I think it’s ridiculous that your insurance won’t cover splints! As weird as it sounds, have you tried getting them on the NHS? That’s how most of my UK EDS friends have gotten theirs. Good luck!
Good luck with the jaw stuff. I’m only just starting down the TMJ path and am hoping that if I start to get it looked at now and get appropriate things in place, it’ll improve. My EDS specialist has a patient with TMJ who got an orthodontist to stick in the sort of anchors they do for people with bands on braces on her top and bottom jaw and then used the same bands to hold the jaw to keep it from opening the entire way. I’m not sure I want something like that, but I’m hoping I can get a retainer or something that’ll help.
I have to get to one of those joint doctors one of these days. My wrists have been bothering me all week, which I’m fairly certain has to do with the massively typing-heavy project I’ve been working on. They’ve been what I believe you all call “dodgy” over there for awhile, on and off, and I have been putting it off for a few years now. The fact that my wrist has felt a little like I tied a rubber band around it and ceased the blood flow since 10am may suggest that a) I failed the Phalen’s test I did this morning rather stunningly and b) it’s time to stop putting it off.
I need to see a lot of doctors. I do not want to, as I’ve had a run of complete morons, and more morons is not appealing. So – I empathize, in my way. If there’s anything I can do, eg. more warm thingies, let me know. Tis the season of street corners filled with vendors hawking winter accessories at appealing prices, also known as time to go back to Pashminas Anonymous.
Hi there – sorry to hear about all that is going on in Nora’s health life, and yours! I don’t know much about EDS, so forgive my ignorance… does it have a soft tissue component? I’ve found inflammation relief from myofascial release (sp?) massage therapy, if you haven’t already run across that. Also, I saw in NYT health section a bit about turmeric as an anti-inflammatory (pill form, combined with a pepper extract) and another about peppermint oil for soothing ibs. non-pharma options that might be worth a look? Hang in there!
Suze