I have been struggling in some areas.
Not just brain surgery, which is getting me down, but other areas. I’ve been getting some particularly creepy and virulent spam which is either going to see me shut down comments completely for a while or else disable certain geographical ranges. We’re working with the ISP to track down the person (my lovely husband, he has ways) but until that’s resolved it’s putting me off. People don’t have to read. People don’t have to like me, and if they don’t I can’t see the value of spending time posting nasty comments. But the Creepy Commenter level is high, which makes me wonder why they don’t just stop reading instead of being slightly psychotic. The twins’ third birthday is coming this weekend. I’d been doing my usual birthday video for them, but Creepy Commenter has me wondering if this year I shouldn’t pull the idea. We’ll see.
Home life is going well and the re-construction of the nursery going very well, however we won’t hit the target deadline of the twins’ birthday. The room was in worse shape than thought and we’re still some ways off. What’s most frustrating is that there are many things in it that I can’t do – sanding. Painting. Varnishing. It was fun when we lifted the floorboards and I got the chance to leave more messages to future owners (this time: newspapers from the past week where Ed Milliband became Labour leader, some photos, and (this, I thought, a stroke of cleverness) some receipts from the grocery store to show how much things cost in September 2010.)
The lack of my being able to contribute to DIY means the house renovations have slowed down. Where once we were a team, now we are a team if what I need to do means little movement in most of my joints. It’s frustrating, annoying, and makes me feel guilty, even if Alastair never makes me feel bad that I can’t help.
My wrist has degraded enough that writing things by hand is painful. I handwrote a letter to post recently, and afterwards it meant a half-day of my hand curled into a claw. I cannot grate cheese. I cannot roll bread dough, mash potatoes, or stir stews.
I’ve been dismissed from physiotherapy for my ankle as it’s not helping – when you have a hypermobility disease the exercises are like asking a weightlifter to just stand around lifting a box of Kleenex as opposed to the weight that he can bear. The physio said she cannot help me unless I have a change of anatomy, and to do that will entail surgery – because my ankles have 100% more range than the non-absurdly bendy person has, said surgery is the only correction possible. To top it off, Autumn has settled in and I have developed a noticeable limp. I’m home early today from seeing said specialist, in fact. Within 5 minutes of looking at my MRI we had agreed a surgery date of the second week of November. I will be in a cast and crutches for weeks, and will be house-bound for two weeks.
All of which is frustrating as fuck. It wasn’t until my mid-30’s that I was diagnosed with a disorder that causes an enormous amount of pain and a not insignificant amount of inconvenience, a syndrome I’d never heard of, a disease I never would have heard of had I not been diagnosed myself. When you’re a kid they screen you for things and educate you about others – scoliosis, nutrition, dental hygiene, reproduction. They don’t test you for a small unheard of condition that cripples some of your joints and turns you into an osteoarthritic playground years before their time. If they had, I would have lived life a lot differently. If I’d known I shouldn’t have done high impact activities, I would never have played hockey, or run, or ridden horseback. Then again, at least I know what it is like to do all of those things, and maybe that’s something, too. Fence sitting – a past time of mine.
I went to see my GP a few days ago to see if I could please have a referral to see a leading EDS specialist here in London. My ankle is being looked at, my wrist is failing again, and I want answers. I want preventatives. I don’t accept that there’s nothing that can be done either for my joints or for the Raynaud’s, and I will pay for the visit from my insurance if he’ll only refer me.
He wouldn’t. He said he’d rather deal with the symptoms instead of the condition. When I said that was a metaphor similar to treating a cancer patient by simply cutting out the tumours, he shrugged.
And speaking of tumours, the wrist is failing because I have a new tumour in the joint.
Back to the previous wrist specialist I saw a year ago and another joint that is facing surgery.
I left there feeling old. I felt frustrated. I felt like an embarrassment.
I didn’t even mention to my GP that one of my hips has started popping in and out of its socket. I suppose at this point, what’s one more failing point?
-S.
PS-there has been an update from Theresa – her lovely nephew D received his lung transplant. He is recovering well and has a color in his cheeks. The doctors hope that at this rate, he’ll be home for Christmas – his first Christmas home with his family, ever. A huge thank you to anyone who read, helped, and sent messages of support.
My heart aches for you when I read these posts. If joints were something that people could donate to each other, I know there would be a queue of folks lining up to help you. I know a mental bear hug from across the pond is small consolation, but I’m sending you one anyway. Right… now. Did you feel it?
Also… I now have the last part of “Waltz for Evita and Che” stuck in my head. If you don’t know what I’m talking about, check the lyrics. I think they’ll speak for themselves. Sending another hug, just in case you missed the first…
I’m so sorry to read about your physical challenges. I hope that you find someone or something that can help you. And as for Creepy Commenter? F*ck off!
I cannot even imagine the pain you are going through. I know, as one of your readers, please tell us. We are hear to listen and give you sympathy. As for the crazy person. Hmm. My first thought is make your blog private. Maybe I say that because I would hope, as a long time reader, I would be invited to a private blog. There are crazy people in the world. Leave shannon alone!
Hi Shannon, if its not one thing its another for you – it seems that your many gifts are cosmically balanced by these physical problems. I think Judi’s idea of making your blog invitation only has merit – the sometimes painfully honest you communicate with yourself and by extension with your readers does leave you vulnerable and we all hate to see you getting hurt any more than you have already in your life. More big hugs from across the pond, along with a standing invitation to ask me to send you anything from Target you might like. ooooo
Don’t often comment, but just wanted to add to others, I’m sorry. Am thinking of you.
Magic Kisses to you Shannon. They’re so you have nice dreams (it was a kid thing). The house will get finished altho’ I do sympathize with you as I hate mess like that. Come to Texas to see our doctors — you can stay with me.
Nasty commenters suck. They are pathologic.
Can you change GPs? With your insurance can you go without a referral?
Hope you find a way to make the twins video available.
so sorry to hear of that sob commenter and even more sorry to hear about all the frustrating medical issues. Man oh man that road through the medical maze can be filled with roadblocks and pitfalls. Hope your GP has a change of heart or maybe you can have a change of GP. I’ll keep you in my thoughts and prayers and although I seldom comment I always check in. Happy Birthday in advance to the beautiful twins.
I have long suspected that the philosophy of doctors was to treat the symptom$ rather than the disease. Thanks for the confirmation. Can you find a new GP or get a referral from the physical therapist? Can you appeal to the insurance company? Think of the cost savings if you didn’t have to have surgeries and therapy! My sympathies on your deteriorating joints – my dad had RA, so I have seen what torture that is.
As to the creepy commenter, I hope he/she finds something better to do with his/her time. And I hope Alastair can track him/her down…
Ah, honey. I’ll come round and lift your tissue boxes for you. And write naughty limericks on your cast, yes?
So sorry about the creepy commenter. I try not to be one, not to say the wrong thing or things wrongly.
Love the idea of grocery store receipts!
I’m really sorry about your ailments and hope you can become proactive in treating it.
If you need to shut down comments for a while, we understand. Do whatever it takes to get rid of the creepy commenter. Whatever it takes.
Creepy commenter has no life! MadDads gran had Reinald’s too. I feel for you
If you just need a referral, can another GP in the practice help? Or a private GP??
PS meant to add, as someone with two completely knackered shoulders and the doctors saying “we can’t do anything about it, but well, what is it stopping you from doing?? eh???” (erm YOGA), I do sympathise.
I can sense your frustration and wish I had some way to send relief. Been thinking about the twins as they share a birthday with my husband. I’ll never forget their special day. Sending *hugs* and healing thoughts your way.
Bastards, bloody spamming, commenting bastards. Sorry you are having hassles. And I can’t imagine how hard it must be to live with constant pain and inconvenience. My husband did his knee this time last year and is still struggling to recuperate. Its hard seeing him sufffer and to realise that now as we get older these kinds of slowing downs are going to happen more and more often. I still feel 24!
Sorry to hear about the bastard commenter and about your body’s pains. Sending positive, healing thoughts your way.
Ban the Commentor! I hope you don’t have to stop comments because this is where we lend you support.
And you have it. I know you’ve seen a specialist, but don’t hesitate to get a second opinion, if you have not already. Sometimes, getting to hear what someone else says can help you make the decision about what you’d like your course of action to be…sometimes just hearing one expert’s opinion makes us feel that we don’t have options.
I’m pulling for you…
I know exactly how you feel. I’m finding an awful lot of distrust in the medical professions at the moment, because fuck it, I don’t WANT a bandaid fix, I want someone to investigate and do something more for my Gyn issues that pat me on the head and try and prescribe things that will cause issues. We won’t talk about joints, but needless to say, I’ve got a lot of sympathy. I can’t hand write either.
As for creepy commenters, some people shouldn’t be allowed fingers that work.
xx
I’m sorry to hear about all your joint issues. I know how awful I feel when I’m out of action for whatever reason, but to have that pain constantly has got to be so incredibly difficult. It’s another reminder to me to live in the moment. Hug my kids when all I feel like doing is yelling because THEY’re yelling.
Very sorry to hear about the worsening of joints. While I’m not as severely affected as you, I’m sad to say I understand much better than I wish. There’s nothing quite like feeling your hip or knee pop out and in just in the walk to work. Or, that I cleaned my car nearly four weeks ago and have yet to regain full use of my dominant hand.
That said–be very wary of plans that involve crutches. Between loose shoulders, bad wrists, and a very angry thumb, crutches are not only nearly impossible, but worsen all of those joints greatly for me.
(An apparent former long time lurker. And it’s not even delurking day…)
I really hope you find a way to stop the scum of the earth that is harassing you. People like that make the world a sadder darker place, and I wish we could all send bad karma vibes their way. I hope you don’t have to block little New Zealand because I would really miss you.
I don’t comment very often (sorry probably only a handful of times in over 5 years), so good luck with the surgery. I hope it works like magic for you :o)
Living with chronic pain can make one very grumpy indeed. It sounds like you are doing the best you can to cope and feel positive. Try not to feel guilty about not being able to help as much with the house–you’ve already done about 50 times more DIY work than anyone I know, man or woman!! I’ve been truly amazed in the past at what you’ve tackled. And this might sound kind of bad, but whenever I had to have any kind of surgery (fertility related for moi), I would always almost look forward to the down-time it created. You want to make three slices in my abdomen and root around in there? Sure, as long as I get out of work for a week!! : )
Love you babe. You need to find out what you can do regarding your GP. I don’t know anything about the system over there, but I would think they would have to refer you, and if the GP won’t I would think it would be with in your right to find a new GP. It makes more work for you (the last thing you need), but you need to be proactive about this. It is your body, and you who have to live with the pain and inconvenience every day. For whatever reason your GP has for going about treatment this way, if it is not what you want than you need to find a GP that is willing to listen to you.
I also want to personally thank you and your readers. They were the first to donate and offer help. All of your words of support and kindness were deeply appreciated. My brother and his wife were speechless when I showed them some of the comments left here-they were both tearing up. My nephew is doing so well I almost hesitate to talk about it for fear I will jinx it, but more importantly I want to celebrate this wonderful gift he has been given. Again, words can not convey my gratitude. Thank you.
As for the creepster-do what you need to do. No explanation
needed.
Sorry to hear about the hater. And the brain surgery. And the restrictions and pain you are feeling. My weak spot is a bad foot – any time it gets set off, I feel trapped by what I can’t do… hang in there?
I just want to say I’m sorry people are being pricks on here…I still love reading, and the twins who I was a nanny for when I began reading here…they turned 4 this week. :)
Yay for Theresa’s news on her nephew. This Christmas will be that much more awesome.
Boo on your doctor for not giving you a referral to the specialist. What a dink.I am sorry you’re stuck in a situation that’s out of your control. You need physical therapy but your body isn’t made to receive the benefits of said therapy.
Boo on the creepy commenter too. Seems like there’s a whole lotta creepiness going around the internet lately.
Re the doc, could you (i) change GP – they have to make it easy for you, or (ii)go and see a private GP who will refer you? Might not be covered by insurance but the specialist will, so you should only be out £150ish, not too awful. Let me know if you want the name of a reliable private GP.
Sorry you have so much stuff to deal with, it’s hard getting everything you want to do as a working mother, especially around birthdays, without all this on top.
Hugs babes x
Shannon,
I have some ideas about the doc as I do know that he see patients from other countries, I met a girl who he consulted with from Australia and have plans to see him again when I travel next to Scotland, so I will email you privately. I am sure that there is a way around your GP. You need to actively manage your EDS, not just treat the symptoms, you will have much fewer problems that way.
My health as well as my daughter’s have really gotten so much better just since July when we implemented some chance that we learned from him at the conference. I want the same improvements for you as well.
My heart goes out to you. You are too young to have to deal with these issues. I don’t care what you have to do, go see that doctor in London. Take up a donation if you need the money! And your gp really angers me. That is not the attitude you need to deal with. Hang in there.
*hugs*