When things turn

It’s been so long since I last posted and I miss my fellow bloggers so much! Here’s a quick update on some of the things going on around us.

The snake

It was painful. My daughter is still mourning for the loss of the little boys to whom she had grown very attached. The mom – there are no words to describe how I feel for her and there is nothing I can say that could ever make her feel better. She is however a true inspiration. I am waiting for the right moment to tell her to write a book because honestly, I don’t know how she does it. She writes beautiful thank you notes and nice posts on her Facebook page. She celebrated her oldest son’s birthday at the grave site where she left a present he was so anxiously waiting for and lit spark sticks as he couldn’t wait for those either. Last week I finally went to the grave site and my heart was so heavy. It had rained and everything needed to be refreshed – just an awful reminder of such a terrible loss.

Finding a job

I’m back at a full time job outside the house and it’s great! Shortly after being offered the position we received a call from Halifax for Gen’s appointment with genetics. Finally a chance for an official EDS diagnosis. While in Halifax I bought a crimson patent leather Coach purse! I even got nice high heels – black suede and they look like velvet. I had a birthday gift from Gen and her friend and got things from Sephora’s. I spent money on me. The last time I actually did something like that must have been 20 years ago. Gen said I needed to find myself again and as I looked down at her, sitting in the borrowed wheelchair, how could I resist the big blue eyes filled with hope looking up at me? The last time I worked I left every morning worried, wearing the usual cardigan and a pair of pants. But this time, things are different as Gen’s on Midrodine and what a difference that makes! So every morning I make it a point to wear something pretty – most of it is old clothes but it still looks OK. Before I step out the door I apply my favorite crimson lipstick and I know that things are better.

The diagnosis

The geneticist is a young woman, very tiny, and smart. She listens and asks a load of questions. Gen is doing really well – I don’t think I’ve ever seen her so determined. She describes her pain in an unusual way, adopting various positions on the exam table and talking about pressure points. I’m floored. I realize I know so little about my daughter. The geneticist listens and then she tells us Gen fits very well within EDS hypermobility type criteria. But there is one thing – she feels that something else is terribly wrong. If Gen has EDS type III, then she’s the most extreme case she’s ever seen. We’re waiting for MRI results for confirmation. We’re OK with that. Gen’s condition is acknowledged – that’s all she wanted. “It doesn’t matter that I missed out on school and my teenage years, all I want now is a little quality of life and to live a little” she says. What a wonderful and positive young woman she is – a true inspiration.

Leigha’s school

Leigha dropped out of nursing three months before the end of her program. She had finished all of her classes with honors but just couldn’t keep up with the training at the hospital. After working all summer in a nursing home (ironic isn’t it?) she decided to return to college for additional sciences courses in the fall and has applied to university for January. Her program of choice: a major in biology and a minor in archeology. Not sure what it is with biology and this family, but she seems to be following my footsteps. I wish nothing but the best for her. She was just diagnosed with PCOS and is now very pale. She’s now a replica of Gen when she was first sick. If this is EDS, we know a little more than we did so hopefully she’ll be treated fairly and on time before the worst kicks in.

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6 thoughts on “When things turn

  1. Hi Sheep!
    Thanks for the update. I’m so happy you’re doing some things for yourself (love the crimson Coach and matching lipstick!) and with some money in your pocket book, why not?

    I’m sooo glad about the geneticist. Yay! Well, Gen could just be a case for the medical books, but if she’s like me with the type II, I believe I have something else + EDS. No doubt about the EDS with all my issues and weird skin symptoms, though. Two docs have mentioned sub-acute autoimmune issues that can’t be picked up by labs and with my extreme myofascial pain that isn’t a perfect fit for EDS and + lupus blood work/symptoms with onset of EDS, it could be something else like that with Gen too–just not autoimmune. I wish we could all just be simple cases with one Dx, but the body is too complex.

    Well, I guess mixed news on Leigha. PCOS can take a bit to get under control and I do know an EDSer with it, but I know way more with endo (I have neither). Both are rather common in general so let’s hope for the best. Well, if Leigha does have EDS, then you know you’re not dealing with a de novo mutation and this indeed is in the family.

    Oh, I have no idea how you can wear high heels! My mother wears them 24/7 with the feet to prove it and has the mild EDS, although she vehemently denies it now. Just Dx’d with tendinitis in both elbows although she doesn’t do anything, OA everywhere w/knee replacement, heart valve issues, and on and on but NO EDS. By brother has stretchy skin too, which makes it even funnier. Oh, whatever. Glad to see a post from you and if I ever feel better, I’ll try to do the same. The ol’ dead blog!
    A :) xo

  2. So glad to read your update! And thrilled that Gen saw this geneticist, and about your job. And that the midodrine is working. I’m going to be giving it a shot again…I got a script for it a few years back but the FDA yanked it off the market for a while. I was just told that it’s back on by a neurologist and told I should give it a shot. I’m glad it’s helping Gen.

    • Thank you for dropping by! :)

      I heard Midrodine was off the market in the States for a while. Scary for me to think about that and what that may have to done people who really needs it. Not sure if there’s a substitute. In Gen’s case it is also doing wonders for her mood swings as she is no longer having panic attacks. The neurologist had told us it would help in that regard. What dosage were you on?

      • I don’t remember, I literally got the script, went to fill it a week later, and was told “nope, no midodrine for you!”

        I’m glad it’s back. Even if it turns out not to work for me, I’m sure there are people out there who relied on it. There’s two motility drugs too that I can’t get here in the US…at least one of them is available in Canada.

  3. Hi Sheep! So sorry I haven’t dropped in for a while, it was a busy summer. I’m so sorry about the loss of those two beautiful boys, how awful. :(
    I’m glad to hear that you and Gen are getting some answers for a change. Gen’s attitude despite all she’s been through and missed out on is just like you said: inspiring. And amazing.
    You two are quite the team I must say! Glad you splurged on yourself for a change :)
    Hugs xx

    • Oh Katie, I haven’t stopped by your place either! It’s been a busy summer for sure and so much has been going on on our end as well. About the little boys, it’s one thing when you hear of things happening at a distance, but it’s something else when it involves people you know and it happens in your community. It’s still very difficult. I spoke to the mom about a week ago (for the first time) and she’s such a beautiful person. She’s a true inspiration. She is hurting but still puts on a kind face. My daughter Leigha still has a hard time dealing with the loss – only time will help I guess. I don’t know if there is ever any healing with the loss of children. I was talking to a client at work who lost his little girl in an awful accident when she was just 11 (she was running along side a train and was hit behind the head) and I realized during our conversation that it still hurts him.
      Gen’s attitude is a very good thing and it’s strange how she had been labelled as being the opposite in Montreal. This is just to show how all of you little zebras go through such hardship but are at the same time so resilient. :) So inspiring!

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