For various reasons I’m feeling low. This is my favorite time of year – I love autumn and everything about autumn. I love the changing colors. I love the cold air and frosty mornings. And I love the fact that everything is bathed orange. Historically there have been good and bad Octobers. This one has many brilliant things about it and just a few not so brilliant.
There are a number of things going on with family that have me severely depressed. It has nothing to do with Alastair or the twins, all of whom are completely fabulous in every way. I won’t go into it here, but suffice to say that someone has had an attack on me that is so categorically asinine, so unbelievably impudent and holier-than-thou that I am still incandescent with rage. They then followed up with a blow to the back of the knees on something very special to me…Christmas.
Christmas, which like a sodding child I have been looking forward to since about May and buying the requisite items for to turn this into a mash between Santa Claus’ Romper Room and a fucking Ice Castle. Christmas, which I had sent an invite out to the larger family in July asking if everyone wanted to come here and got their acceptances. Christmas, which is now not going to be the event it was supposed to be after all. Not at all.
It has me low. A few weeks ago I enacted my “This many days till Buddy the Elf” frame of mind. Now I think: Candy cane forests, they’re not real.
It is furthered by my some of my joints simply giving up. Giving up. I read my book and I find out things that make me want to track down every doctor I’ve ever had and thrust it in their faces. IBS, painful and heavy periods, UTI, kidney infections, migraines…all of these symptoms of EDS. I’ve spent my life feeling like I was at best a big baby, at worst a hypochondriac, and it turns out all of these things could be linked to one stupid condition which is suddenly taking over, a condition which was exacerbated by years of eating disorders and triggered by being pregnant and which only came to light two years ago, after painting a house and damaging my wrist.
And there’s a 50% chance of inheritance with it. The twins each have a 50% chance of it. I watch their still languid toddler limbs, their fluid toddler joints. We won’t know for a few years. I watch and try to stave off the unbelievable guilt.
I want to find out more, but my GP won’t refer me to the specialist in London. We’re treating the symptoms, he said. The doctors you’re seeing for each individual joint may be insulted. The specialist in London will absolutely not take on a patient without a referral. I am where I am.
My wrist went from bad to worse yesterday. My consultant’s assistant phoned me – my wrist consultant has been diagnosed with clots in her lung and won’t be treating patients for a while. I see a new consultant yesterday. She was kind, pro-active. We walked through my MRI. There on the screen was torn cartilage in my wrist. Beneath it a shiny white tumor. Neither are related to my previous wrist injuries, they are all new injuries in an all new space. We talk about my options – ultrasound guided injections or surgery. Both will treat the immediate issue. Both will need to be re-done in a few years, or when the joint starts to give way again. I opt for the surgery – I want the entire wrist to be checked and it’s a more long-term solution than the injections. The consultant injects my wrist with a mixture of anesthetic, pain-killer, and anti-inflammatories. It will last a few weeks.
The surgery isn’t until some time in November. My ankle is also being operated on in November. I’m not sure how to work this just yet.
The injection has turned my arm into a giant purple bruise. The pain is indescribable and has me nauseous. I am taking codeine, which usually makes me sick. I figure the choice between puking and pain and puking and no pain is a no-brainer.
I cannot write (my detractors would say I never could). Alastair has installed voice recognition software on my pc to help me get by. I can’t clap, which if you are around small children is a major disadvantage (to say nothing of being unable to do the hand motions to “scooping up the field mice and bopping them on the heads”.) I can’t even push the top of the soap dispenser down to get soap. Beneath the brace my skin is falling off, so I take it off to let air get into it.
I try to dial down the rage at a certain family member because it’s not productive and nothing is to be gained by it.
I try not to think about my body and its failings, because all that happens is a taste comes up in my mouth. It is bitterness. I cannot bear it.
I spend the day with the fabulous twins who seem to have left the two year old tantrum days behind them. I watch TV. I get taken care of by Alastair. I get over myself. I tell myself that I have a lovely life in many ways and that this is penance, this is karma, this is what has to be. And I tell myself there are worse things that this, because there are.
I’m aware the postings here have recently been of the not humorous variety. I’ll get back to you on that. The good news I am not on the dark side, debating tortured adolescence, writing moany Goth poetry and using safety pins as fashion accessories.
-S.
My
doorinbox is always open. Just so you know.I know and understand the frustrations of a body not doing as it should, I know the tears, anger and downright self pity of it all. If you need a chat, you mail me or tweet me
Shannon, right now I sure wish you were here in the US where you could have specialists up the kazoo. Is so frustrating not being able to volunteer to come on over and clean your house for you and finish putting your gardens to bed and hold books while you read to the twins – I’d do all that and more in a heartbeat.
My thoughts and prayers are with you.
This is for the twins: http://www.youtube.com/watch?v=R6xKM-H2awE
That holier-than-thou comment has been bugging ME, so God alone knows what it’s been doing to YOU. I kept thinking that I must have missed a winky emoticon or a tongue-in-cheek undertone to it, but… no. I didn’t. I’ll pull my jaw off the floor at some point, but I haven’t managed it yet. Resentment at your rising career progress, much?!
I hadn’t realised your wrist was so bad, sweetie. Sadness. Tip: Tell your joint consultants in November – whichever one claws you into surgery first- that your GP is being sticky about your referral. They will either give you a decent reason why you don’t need referring (giving offence is not a good reason) or simply tell their secretary to scribble you a note to Specialist. Telling tales is Acceptable, in this situation and it’s worked for me before.
And… what the FUCK are you all doing to small helpless field mice?
The doctors seeing you for each joint have a list a mile long and if you walk out of their lives I doubt they’ll be too upset. I wonder why it is that the GP won’t refer you, the explanation given seems such a non-starter.
You can choose your friends but not your family. So unfair.
Clearly, HFF has not heard of Little Bunny Foo Foo. I had not heard of him (it?) until I was in high school, but my daughter wanders around singing that song. In fact, at her daycare, they have a little bunny named Foo Foo. But he bites, instead of bopping heads.
I’m sorry that some extended family member is trying to ruin your holidays…but remember – the only really important people are you and Alastair and the twins. Everyone else can fuck off or get with the program. You’d be surprised at how freeing it is to please only yourself and your most important loves.
Sorry to hear about the disintegrating joints…and I was hoping you’d ask the wrist consultant for a referral. Obviously, you’d know for sure then if you were offending her. Sometimes you can solve a problem; sometimes you can only work around it. I think this one requires a crafty work-around.
I am sad that you are having a hard time right now. Someone close to me has been struggling recently with a terrible condition that renders them mostly useless and despite the obvious, what we are all struggling with is the acceptance of the condition rather than the symptoms. I wish they could just say outloud how bad it is and how sad and angry and disappointed they feel. Well done to you for saying it out loud. I hope you can find solace in ALL THINGS CHRISTMAS regardless of bah humbug relatives.
Oh Shannon. No words really, except I know how it feels all over. I still can’t talk to some family members because of vitriol on a blog and it’s horrid.
Heavy periods are part of EDS? Well yay fucking me. I might as well stop bothering my gyn for a treatment plan then and just invest in enough drugs to get my stoned through my period. Or something. Shit. I should have known really, everything else that is broken is EDS related, why not my uterus too?
Well, it’s probably selfish of me to say this- but I’m glad I’m not the only resident of Suckville. That’s where we’re living, yo. Of course you’re not writing peppy, humorous posts right now- how could you when you’re being inundated with crap? I feel ya. Things have been so crappy lately I actually (not making this up) googled “How do you ward off the evil eye?” and I’m a freakin’ Catholic! I don’t even know what the evil eye is, yet I’m pretty sure it’s holding me hostage in Suckville. As a result, I’m now wearing a medallion (as of yesterday) to ward off black magic and difficult relatives. I’ll let you know how it works out- you might want to invest in one.
Oh, my dear. Oh, shitty shit shit. And Christmas all ugh and not Christmassy this year now. UGH bleargh.
And Judgey McJudger family members too? Yes, well. I read the exchange and hauled myself back with a Grip of Steel, because my Drama Llama hasn’t had quite enough exercise recently and was rarin’ to go postal about something. Should I have just let it? Would that have been much, much worse?
Your GP is a giant, colossal, king-sized, twat-weasel. What the effery-butt-fuck does ‘We’re treating the symptoms, he said. The doctors you’re seeing for each individual joint may be insulted,’ mean? It means NOTHING. It’s DRIVEL. I second HFF’s suggestion.
I kiss your wrist and ankle better. I am angry the lidocaine has made things (hopefully temporarily) worse. It saddens me to know you are in so much pain right now (and it’s this sort of thing that makes me want to throttle Intelligent Design exponents. Oh really? This sort of thing is Intelligent, is it? An I were designing creatures, I’d make sure their joints didn’t go to bits on them before they’d finished with them, thank you. Does that make me more intelligent than my Designer, eh? Eh? Well?).
I dare you to write moany Goth poetry anyway. I bet you’d accidentally write something pretty excellent.
Yeah, that comment was completely asinine. I think some of it was the fact it was so off the cuff and just so….blatant. Like it was fact. Much like HFF, I’m wondering about resentment-not only at your career progress, but also the fact your children are wonderful, well adjusted, and just so damn fantastic.
Christmas has been a bummer the last two years for us, and I can sympathize with you about how hard it is to keep yourself in the spirit. I’ve noticed that I go into a “do it for the kids” mode. This Christmas doesn’t look like it is going to be any better, and may even be worse since my brother and his family won’t even be here.
As for your health-I don’t know what to say. I can’t even began to imagine what you are going through, and I wish more than anything I had a quick fix.
You know what’s weird? I love the shit out of autumn, and we’ve had an awesome one so far, yet I just can’t enjoy it. Last night I had a dream that I slept all through autumn, and was so distraught over it that I missed Christmas as well. Sigh……
I agree w/ above that the other docs you see might give you a referral, but I don’t know how the system works. Also have you contacted that specialist directly? Or would the guy who diagnosed you give you a referral (I dunno if it’s the same guy you’re already seeing). My docs from Japan email me stuff and I’ve been in the States ages now, so old docs have long memories.
Oh Shannon! I am so sorry about all of the shit. Asinine and holier-than-thou is tough to deal with on a good day. I am certain you will figure out how to deal with it. You seem to manage difficulty with a grace that I admire.
As for the medical–good grief! I know you have said that you have insurance in addition to the socialized medicine. Can you go see a different GP?? Is it required that only the GP can make the referral?? I know these are things you have certainly thought of, but I just can’t fathom that there isn’t a way around it. Ugh! Having a pain in the ass diagnosis is bad enough–having to maneuver around all of the logistical bullshit. I know you have tons of resources, but I would be happy to do any medical to human to human translation if it is needed. Otherwise, all I can do is send much love, good wishes and fairy dust. Hang in there, friend.
I’m sorry to hear of your joint troubles – I really am. It bites when simple things are impossible. Sorry, saying “it bites” isn’t exactly the right tone either – but I’m not trying to be facetious. Right – onto – what I CAN talk about and that’s Christmas, and family. The only major open argument I’ve ever had with my sister in law – and my mother in law was about Christmas. I TOO had done all the inviting and gotten the acceptances and done the planning etc (in November – because Christmas is something I start looking forward to the day after my birthday (January 22nd!!). In this particular December a couple of years ago – I got a email, (a group email – to everyone I had invited) – and it simply informed everyone that Christmas was now going to be at their place. Ever seen a grown woman FUME liquid nitrogen from her ears? Yes that was me. Anyhoo – it involved bits of totally childish shouting (not by me) and accusations, and all sorts of stupidity until my hubby got involved, sided with me (HAH!) and that was the end of it. Now we live on separate continents. Well until next June anyway. I think I’ll have to start planning Christmas 2011 right after New Year. Heh.
Christmas-related disappointments are an uber big deal to me too. I’m so sorry your plans have been spoiled Shannon. I bet you can make it magical for yourself and your beautiful twins almost whatever happens – maybe you could treat yourself to an early viewing of Elf (and possibly also of the Miracle on 34th Street, the old version) just to ensure it? But in the mean time, compounded by pain and health worries, a Christmas let-down must royally suck and you have lots of sympathy from me xx
I am so sorry you are feeling low, even sorrier that it’s at your favorite time of year. Are you saying you can’t have family in because you’re in too much pain and will still be recouperating from your ankle surgery? I wonder if – and I know you’ve probably already rejected the idea because you, like me, prefer to be Super Woman – you could still have them there to celebrate and let them help you make Christmas and prepare?
On getting your referral, could you possibly go to a different GP, perhaps one who is more lienient that a friend or co-worker knows – who would give you the referral you need for the specialist? I don’t know how the med program works there, but I was just thinking and thinking of some way to help you get where you need to be…
I do understand your frustrations, wondering how no one was able to add all your symptoms together and figure out the EDS diagnosis before now. I do – same with me and the endo/pill situation. But try to let that frustration help you fuel your advocacy for your own health and that of your family.
You’re in my thoughts…I believe in miracles…
I wish I lived close by, I would come clean your house, help with the kids and cook a meal. And have a few laughs. :) Family can suck. We cut my husbands entire family (with the exception of his 92 year old grandfather)out of our lives a little over a year ago. I can’t tell you how much more we enjoy each other, without the threat of someone trying to undermine it.
I know, it’s not on the right scale, but… *offers you a chocolate chip cookie*
Am sorry you are feeling down. What a nightmare. I hope your wrist heal or the pain is less. Still look forward to Christmas – it is a magical time. Let people look after you and help you too.
I’m just so outraged at your GP that I don’t have much more room to be outraged at anything else. Shannon, there is a way round this. Your GP is obliged to give you adequate care, and he/she is not doing this. If despite repeated requests you are not getting what you need, then you change GPs. In the meantime, HFF’s suggestion is good, get the specialists to talk to each other. But your GP is an ass and you deserve better.
I’m so sorry you’re in pain and having to deal with BS like this. I’d like to scoop up the asshat that made the asinine comment and bop him on the head. *hugs* In fact, I’d like to do the same with the doctor that refuses to refer you to a specialist while I’m at it.
Thanks to you, I now have ‘Little Bunny Foo-Foo’ running around my head on an ad infinitum loop-type thing.
*blows raspberry*
I mean, if she could SING, t’wouldn’a be so bad!
Joining the change GP chorus. Or one of the consultants already looking after you can refer you. All the specialist is interested in is having a doorkeeper to prevent self referral I doubt he cares what grade of doc does the referral.
Wait, did somebody cancel CHRISTmas? Is that what I’m hearing? : )
Hope you don’t mind my attempt at levity. I’m sorry about the holier than thou person doing/saying whatever it is they did.
I’m also very sorry about your physical condition and hope and pray it improves.
You know what? Don’t focus on what you DON’T have (your stupid, insensitive family member) and focus on what you DO have. A wonderful family of your own. I know you are doing that. Embrace them and thank God (or whomever) every day you have such a wonderful little family of your own!
“I am where I am” is absolutely incorrect. I know that everyone is telling you to change GP’s, and I realize that isn’t as simple as it sounds. You are, however, seeing other doctors, and one of them can give you a referral to the specialist. What sucks the most is that you have to advocate on your own behalf (Alistair can’t call the GP and tell him what to do, as the GP will only talk to you) and when you’re ill it’s the last thing you want to do, but you must. “Treating the symptoms” is an 18th century idea … what’s next, bloodletting?
I had to be my own advocate when I had cancer, and it made a difference. I wasn’t whining, I was direct, sometimes I was really sick and I thought I was whining, but it doesn’t matter. The first time you pick up the phone is the most difficult; it gets easier. Go for it.
*sigh* I hear you on the asinine comments thing, though thankfully I can usually discount it. (I have family with a wide range of political opinions, and by wide I mean libertarian to “she grew up on an honest-to-goodness commune” wide, so when somebody starts slinging opprobrious epithets it’s quite possible they’re directly insulting my mother.) It’s hard to accept just how jerky it is possible for people to be. Especially when they’re doing it to deliberately spike your wheels. (I don’t understand that.)
Virtual hugs and candy canes.
By the way, has anyone ever told you about St. Nicholas Day? It’s celebrated in Eastern European countries such as Poland (where my father’s family came from.) On the night of December 5th, you put your shoes out and get treats in them on the morning of December 6th. In my family, it was gingerbread, small toys (such as Hot Wheels or later, silly joke gifts.) Chocolate coins would also be historically appropriate. It was a little taste of the season to come… and I think three years old is just the age to appreciate it.
I’m sending you warm vibes from Massachusetts! I wish there was more I could do, but you have been in my thoughts…