My daughter Veronica is twenty years old and for those of you who don’t know her, she is the author of “sleepless nights”
This is hard to write because the story is so long, so full of heartache, frustration, fear, anger, lots of anger and finally a numb acceptance of, “Well this is how things are going to be, best just get on with it.. “So I will just outline the bare bones of our story for now..
In february 2002, when Veronica was 13 she complained of a sore hip, bursitis was the initial diagnosis and Von ended up on crutches for a few weeks. Then Vonnie had a fall at school, hit her head and developed a headache that just wouldn’t go away. Veronica was then struck down with a mysterious virus that had the identical debilitating symptoms of glandular fever. Veronica was very very sick.
So with my teenage daughter experiencing painful joints, a constant headache, nausea, night sweats, general weakness and malaise, I was beginning to become very worried. The best description that I can give of how sick Vonnie was, is for you to imagine Ross River virus/glandular fever/lupus all at once.
It was about this time (April or May) that we jumped onto the medical roundabout and at the end of the ride I had formed the opinion that most doctors are twats. In my more furious moments at home, I would refer to the specialist of the moment as a ‘stupid fucker’, ‘condescending shithead’ and other terms of endearment…Veronica has written about this here in a post aptly titled, “I dont look sick.”
At the end of 2002 after all Veronica’s blood tests had returned as normal. We were told that it was Chronic Fatigue Syndrome and to go home and “Deal with it”
And deal with it we did. Veronica was always a high achiever at school and she didn’t let a little thing like a chronic illness stop her from participating fully in all the stuff that her school had to offer. She was a straight A student who played sport, was in the physically demanding, Rock Eisteddfod and had an active social life as well as a good lot of chores to do at home.
In her final term of year nine, after a few months of being reasonably well, Veronica became really ill again, with terrible joint pain, headaches, nausea and a grinding fatigue. Our GP prescribed something for migraines and told Veronica and I that it was a CFS flare-up and we should expect them from time to time.
So Veronica went back to school, thinking that it was a flare-up and tried to make the best of it. When in fact she had contracted glandular fever.
Writing this now years later I can’t believe that my 14 year old daughter went to school with glandular fever and still managed to ace all her subjects.. *sigh*
Seven years later we are still no closer to getting a diagnosis for Veronica.
Until Monday.
On Moday I took Vonnie to what we thought was a quick trip to a physiotherapist to get a brace to support her pregnant belly. Here is a chunk that I have lifted from Vonnie’s blog post describing the physiotherapist’s reactions to Veronica..
According to the physio, all my pelvic and hip pain stems from the fact that the right side of my pelvis has twisted anterior, while the left side of my pelvis is normal. She realigned my pelvis and then gave me a sex-ay pelvic brace to wear to keep everything in position.
So.
We talked a little about my CFS and the condition of my muscles and joints which are in her words ‘the worst muscles and joints I have ever felt’. Apparently all my joints and the muscles/ligaments holding them together are very weak and not in great condition.
Even better? She doesn’t think that any of this is related to my pregnancy at all, she feels that it is all related to my “CFS” and has been aggravated by my pregnancy.
My CFS was never ‘formally’ diagnosed. It was what my GP told me I had after 2 years of tests and bloods showed nothing conclusive. It was what everything boiled down to when I was still sick and nothing could be found.
I got put in the ‘too hard’ basket.
So, finally after nearly 7 years some things are starting to gel. Some pieces of Veronica’s health puzzle are falling into place. We are off to our GP again tomorrow and Veronica is going to discuss the possiblity that she might have EDS. Ehlers Danlos Syndrome..
I am a tad worried now…
To be continued……..
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Ohhhhhh…. Bless you guys. I am hoping for more answers, and soon.
“Treatment is supportive,” argh. That is such a fancy way of saying, “Good luck to ya! Let’s try *this* and see if it helps!”
I was kinda hoping when I saw the top part of your post on my following thing that you were going to grouse about teenage rebellion and whatnot. I was hoping to gently remind you that she is an adult.
DOGGONE IT but you didn’t do that.
And bless whoever suggested this to Veronica but I forget who it was. Sorry.
Will pop by Veronica’s for more.
Doggone it.
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wow – Veronica has been through a lot. I don’t know what to say but I am praying you (& she} get answers and damn good ones.
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I hope the answers are found this time.
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After all this time I really hope you and Von get the final diagnosis and a proper plan of attack.
(((hugs)))
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Hope you finally get some answers hun ((hugs)) to you both. xx
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Oh Kim. Hugs. All I can really say is that if my mother had treated me in the way you have Vonnie things would be very different
I’ve left a comment on V’s blog, but I’ll say the same to you. The vast majority of those with EDS do not have the severe level of problems I experience or Ms O does. In fact according to our wonderful Prof there are only a few of us that unlucky. Most ppl with EDS live completely normal lives and once they are able to understand their condition even more so. Sure some drift into ‘illness behaviour’ and very much enjoy having such conditions but the majority do not. From all you say of V’s character she will do really well regardless.
I’m keeping my fingers crossed she has the milder HMS (www.hypermobility.org) and hoping you find the right answers soon.
BTW if it IS EDS or HMS it’s probably worth getting yourself, spouse and David checked. I understand your hubby has had various joint issues so it may be from his side of the family. If so I hope diagnosis will explain things for him and improve that too.
Good luck Kim, I hope things become clearer soon and I’m just so glad that blogging has brought us all together so you can find the right answers. Lots of Love BG x x x
As you know (or maybe you don’t) SWMBO and a couple of her sisters have EDS. The hypermobility thing. There are different forms of EDS and different levels of effect within those forms – so it is very difficult to diagnose. And there aren’t a lot of people that know much about it. It all has to do with how the body manufactures collagen. People with EDS don’t make collagen properly. Things stretch and then don’t return to normal. Some structures in the body don’t have the strength they should. It’s a genetic thing. Not curable (yet). But, once it’s understood what you’re dealing with, it CAN be manageable.
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You guys always have such a positive outlook – I know that someone or something is looking out for you and yours.
XXOO
Your daughter is one of the most fabulous rock stars I think I’ve ever met!
And I’ve never met her!
Sometimes the best way to find out answers is to become your own case manager. Keep looking, keep a positive attitude, and she can do it!
You guys are such a beautiful family. I feel blessed that I found you guys on the Internet.
I wish strength for all of you through this.
It won’t be easy, but I think you’ll manage.
Well, seeing how Veronica managed to do well despite having CFS. That’s amazing. She puts up with a LOT and still manages to be adorable and funny.
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Hopefully you guys can finally get some answers! Will be thinking about you
You have my best, as always.
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I have a million things I want to say in this comment. I’ll email you instead.
I, too, was hoping this story was going to be about getting through the rough teenage years with a too-smart-for-her-own-good daughter. But this? THIS just breaks my heart on so many levels.
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If she does have EDS, well, that just sucks. But it will be better to have EDS and know it, instead of a bullshit diagnosis because they can’t find anything.
That talk sucks, the “you have a disease” conversation with the doctor, but it’s also a relief, because you can stop wondering what the hell is wrong with you, you can stop thinking it’s something you did or didn’t do, you can stop worrying it’s cancer or TB or some random tropical virus.
Even if there is no treatment, knowing what is wrong means that Veronica can learn from others with the same thing — that there are things she should avoid, there are things she can do that might help.
And just because there are no treatments now doesn’t mean they won’t find something in the future…the drug that I depend on, the drug that keeps my Crohn’s from making my life completely miserable, has only been around for 15 years.
It sucks. And I am really sorry your family is going through this.
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And oh, yeah, it’s pretty cool that you used Thor dancing for me to get Dave to pose for you!
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I hope she finally gets (the right) diagnose! Hugs Kim xxx
aww Kimme..
will be thinking of you both..
hope you get some answers..
big hugs..
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Oh wow! I have such similar symptoms!! It took me YEARS of my symptoms getting worse, doctors just shoving bags of drugs at me and/or telling me or at least looking at me like I was making it all up, it was all in my head, I was just depressed, or shrugging their shoulders with nothing to tell me except “well, keep a health diary and let’s go from there”. After years of ups and downs and very hard pregnancies… finally, last year at age 31 (I’m 32 now), I started to find some answers. On my own, with the advice of a friend and with my own research and trial and error treatments.
I highly suggest that Veronica research the following things – and tell her doctor to test her for them (doctors don’t like to test for these things, because it’s not a simple blood test, and/or they aren’t familiar enough with them)…
1. gluten intolerance/celiac disease (for the headaches and stomach problems!!! I can totally avoid migraines and usually avoid other types of headaches for the first time in my teenage/adult life!)
2. fibromyalgia and chronic myofascial pain (fibromyalgia can mimic CFS, but it’s not the same thing, and from all her joint and pain issues – I am guessing she has the above two things – not CFS).
Please, please, please – ask me any questions if you guys decide to start researching any of these things – I have learned so much in the past almost-year, and would love to pass on the information to someone who could use it. I also, along with a gluten intolerance, have a chemical sensitivity, so have gone fairly ‘green’ which has helped many symptoms as well. If you need links to symptoms and how to diagnose any of the above mentioned items, let me know and I’ll send those along as well.
I’ll copy this comment onto Veronica’s blog as well. I HOPE this info can help you – I WISH someone had told me about these things years ago – I could have avoided so much pain and fatigue. I was finally getting to where I had energy, was feeling good, and was on a regular and actual difficult exercise regimen when I found out I was pregnant again. The pregnancy has exacerbated my symptoms so I can’t fight the diseases I have as well, but I do know enough that this pregnancy isn’t as bad as my last one. 🙂
Right now I’m so very glad that you and Veronica both have blogs. You might never have come across this information otherwise. At least now you have something to test for and get some kind of treatment or at the very least, support.
I hope the GP is on the ball and refers you to the right person who has some answers for you.
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