Next step

This morning the call came – finally.Β 

My daughter has an appointment in two weeks with an Orthopedic surgeon for her pain and joint hyper mobility. We are still waiting for the Genetics clinic as we are hoping for a formal EDS diagnosis since no one seems to want to get involved – it’s like a “mystery” diagnosis doctors seem to want to run away from.

The cardiology results of the last couple of weeks I assume fall within acceptable range. Nothing is said of her “blue fingernails, blue legs, palpitations, dizzy spells, overall weakness, and near fainting episodes”. But still, our family physician insists that my daughter has POTS or something related to the malfunction of her autonomic nervous system and as such is not comfortable in treating some of her other symptoms (which would involve the risk of lowering her blood pressure but could alleviate some of her other problems).

Although I’m relieved a “serious” appointment is coming up soon, I realize that a diagnosis of dysautonomia is unlikely. Yet I’m convinced that this condition is keeping my daughter from being functional – in addition of course to the pain she is feeling because of hyper mobility.

So how do I cope with the frustration and anxiety of things not taking us one step further?

Well, I found a neurologist who specializes in dysautonomia and will have my doctor write a referral tomorrow morning. That of course will mean another 8-hour trip but still, it’s better to open another door in advance as I don’t expect things to be moving quickly.

In the process, I found an interesting article on the topic which you can access here.

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45 thoughts on “Next step

  1. It must feel like you are climbing a mountain, and the higher you get the air is getting thinner and it is harder to breathe. But you have to keep going. Rest up these two weeks and then head back out again. We are hear to listen and remind you that you are not alone.

    • That’s a good way of putting it. It does feel like the air is thinning but then all of a sudden it’s like we’re hitting a good spot… then it gets hard again. Thank you for your support. πŸ™‚

  2. Praying for you and this appointment. I understand the frustration of being told that its in your head, or they can’t find anything wrong, or the worst, that its just because you are unhealthy. Good luck, and keep fighting until you get a doctor willing to invest in helping you reach a diagnosis. My POTS was finally fully understood by Dr Karen Friday, who also suggested being tested for EDS. My life changed by having a doctor that listened and believed in me. Now most practitioners struggle treating me, but are excited to learn and do research. You can can do this!

  3. ❀ I think the best thing my primary care has done for me is get me this diagnosis. It started with a tilt table test (which I think your daughter would fail with flying colors) and progressed to the right rheumatologist and the right geneticist at the right time. And there were a lot of jerks along the way, and I'm sure there will be more. Having the diagnosis is so key, even if it's just as a short hand for all the symptoms. But it took 40 years to get, if we count from birth. And it took 32 if we count from the first time I passed out as a kid. Having a mom who is going to fight for her will help. I know it feels like you're just digging and digging in this hole but I also know that with you at her side, she's going to get what she needs and that includes eventually finding her way out.

    • Yesterday, I was looking at the BP monitor results. The report of course shows “averages”. The lowest BP she had was on 49 (the only one data in there). And they’re using the average results to say – oh no, her BP pretty doesn’t change drastically. My doctor told me we needed the tilt test for the “official” diagnosis of POTS but then she added “But it is clearly apparent when we take her BP in the office “. Her BP is all over the place from one second to the next. I found a neurologist in Montreal who specializes in dysautonomia . I called, sent the referral, some test results, and am crossing my fingers that things will work out.

      It may sound a little twisted, but hearing of other people who “knows” what it’s like and how difficult it actually is to get the right diagnosis somehow feels good.

      I feel like I’m “spending” my life trying to get help for my daughter. But we have an amazing family doctor who KNOWS (has little or no doubt regarding the diagnosis of EDS and dysautonomia (POTS, endocrine disorders, etc.). Hopefully all of this will take us somewhere soon. I was also told yesterday that the Orthopedic surgeon she is seeing on March 4th is part of the connective tissue disorder clinic. Hopefully, something will be confirmed so that she can now be treated fairly.

      • Ah, you just hit on what I used to really emphasize when I taught research methods to undergrads. Why central tendency as a singular measurement was worse than useless in making inferences. Too bad to know that doctors didn’t get that lesson, or that it didn’t sink in. 😑
        I’m so happy you have a good family doc.

  4. Hi Sheep,

    Sorry I’ve been so bad about stopping by. I’ve read about POTS, but don’t feel that I have it, although I do have some bizarre ANS issues. I wonder if POTS is more common in Type III? No Type II people online, ever! I think there is definitely a connection, but why? My doc says there’s an overlap w/CT disorder and auto-immune issues (which I’ve had) and the latter has an overlap w/the autonomic nervous symptom. What a mess! The geneticist I saw didn’t include my big ANS issue, which they call SICCA syndrome, in the formal Dx. I think that name is a misnomer as I don’t have Sjogren’s and I can control it with a medication for the most part, but it was really terrible when it hit. I think my MVP is an ANS problem too, and that’s common in EDS. So, I believe there is more than just POTS (as far as ANS issues) that tags along with EDS.

    I also have very low BP (around 80/65 or so) and get some dizziness, but I don’t pass out–although I have on weird occasions that don’t seem to be connected to the BP. Hasn’t happened for a while. Does your daughter have hypogylcemia? I get low glucose flagged on fasting lab work and have to eat every few hrs. or I’m a sweaty, shaky mess. This is since I was in my early teens I think. Wondering if that’s connected? I still don’t understand the crazy venous pattern I started getting 3 yrs ago. I’m practically blue from the road map of veins and had to get the Type IV test, which is very accurate, due to it. It’s terribly ugly and I just hide in my clothes. It sounds like it’s your daughter’s skin, rather than the vessels, that is the issue. Not sure. Almost like a “blue baby.” Has her complexion lightened with age? I have golden-olive undertones but am so pale. I never looked like this before and although I’m pretty nocturnal, I grew up in Seattle where there’s no sun. This is odd… Who get’s lighter as they age? Who to ask? I don’t have anemia and can’t figure it out!

    Well, I can’t (or can) believe she hasn’t even gotten a clinical Dx of EDS Type III–that’s odd. That, coupled with the POTS that I’ve read so much on, seems like it could fit based on what you’ve written. At least it would be a diagnosis! I am so hoping the next doctor appt. goes OK, as we discussed. Is the purpose of an orthopedists to assess her joints? You are not alone with the anxiety before seeing a top doctor in hopes they will have an answer. It’s worse when you have to travel (or pay out-of-pocket like here in the US). I go into my “cautious optimist” zone and say, “50/50.” How does your daughter deal with this? I know the young and the old handle things better than those in the middle (one good thing). Does she fall apart or is she used to it?

    Again, I will wait for your story to be a TV movie to catch the whole thing (think you should start the novel NOW). πŸ™‚ I know I’ve said this before, but I so admire all that you do for your daughter; it’s the heartwarming aspect within a tragic story. I don’t know what that’s like as I never had it, but I know it’s how things should be. Jeez, sorry for the “20 questions” in here!!!

    Hang in there…
    Alisa πŸ™‚

    • Who knows if ANS issues and EDS are related at the gene level. I remember talking to a genetics counselor who told me EDS patients had a myriad of other issues on top of it. My daughter has PCOS, hypothyroidism, insuline resistance and really, that’s just the beginning of what we know. Her aldosterone is way above what it should be (suggesting secondary hyperaldosteronism??) and her cortisol is sort of off – a saliva test revealed strange results. For over a year now, she’s been complaining of distorted vision (lines are curved where they shouldn’t be).

      I’m hoping that the appointment with the orthop will bring a diagnosis because he is specialized in connective tissue disorders (I was told). Really EDS type III is easy to diagnose as there is no genetic testing: my daughter has a positive Beighton score and Brighton criteria. It took only a few minutes for the physio to see what was happening. Someone has to step in and confirm because she needs to be assessed appropriately. The stress test results showed that she had no exercise tolerance so I’m sure something will happen on the other end as well (ANS). My doctor for the moment takes her very seriously – and that means a lot.

      It’s hard for my daughter because she can’t do anything physically – or very little on a good day – and the feeling she has that people are criticizing her is very difficult and pulls her down. She loses a lot of her drive from that which is probably in part the reason why she is not doing her schooling.

      She started Metformin which will probably result in her losing the weight brought on by insulin resistance and that on its own will make her feel much much better. Both physically (less weight on her joints, energy level) and mentally.

      I wish she would get online to exchange with you and others but she’s not willing to. She’s sort of in hiding. So in the meantime, I take care of everything for her.

      I guess I should be proud of the mother that I am. πŸ™‚ Thank you for your kind and heartwarming comments to that effect. They mean a lot. I don’t think I realize all that it requires. I think I’m just being carried by the river. Perhaps we should get together to publish a book on the topic. The EDS bible….

      xox

      • The EDS bible… Lol! I’m glad we all found each other as there ARE so many oddities and then the overlap between the types. We have an intelligent group of women here (I chat with nearly everyone on this post) and maybe this will turn into something–who knows? I can write the long chapters like my long posts (oh, ha ha). Anyway, It sounds like your daughter’s pituitary or adrenals or ??? are just shot. I just have the hypothyroidism that came on when the EDS went crazy. Curious about her vision… That’s not keratoconus so no worries on that. I can’t see near/far and see multiple images. So many hormonal issues at such a young age–terrible. 😦 It’s so unfair and I don’t like that in general.

        You are right that Type III should be the easiest to diagnose! It’s so obvious. That’s just odd. I like how you mentioned the physio (or PT here). Mine helped me connect the dots by going crazy over my shoulders that are falling out of the sockets. I think a good PT is key. Also glad you guys have a great GP (pediatrician?). I feel like my body is shipped out to various specialist–none who specialize in this thing! Well, c’est la vie.

        I wonder if there are any teen forums on EDS online that your daughter might be willing to join? I can hardly find anything on EDS beyond the basics. I want to start a support group here but I don’t ever find them supportive and feel too sick to do it (that’s funny–I can see a cartoon of that!). I wouldn’t want to talk to someone in their late 30s+ at her age, either! Blogging has been so great for me as I won’t do FB, etc. and I’m alone all the time, which sort of sounds like her life, aside from her having a family.

        I’m so hoping your visit to Halifax will shed some light (awaiting the post). Well, let her know she has at least one “old maid” online sending hugs…

        A (the vampire is going to go to bed very soon as the sun is up)

      • There are forums for teens. I’ve seen them. There is actually an association I came across where they have kids speak out on their symptoms and lifestyles through videos. Still, my daughter is not interested. She was always an adult stuck in a child’s body and she sees to have a hard time relating to people her own age. It’s so complicated. Perhaps when some of the stuff clears up – she’ll look into it. I think she may feel like she’s on the outside as she doesn’t the “formal” diagnosis.

  5. If you keep struggling to find someone willing to diagnose, you might consider flying to Stanford University in CA to see Dr. Karen Friday. She is a cardiologist, specializing in POTS, and actually takes the time to listen to her patients. It was a 9 month wait to see her, but seeing her is finally what got us on track. Not only did she get my diagnosis, but she sent every doctor who treats me a 7 page summery and treatment plan. Just a thought!

  6. Thank you! I really thought that the cardio my daughter was referred to would test her for POTS but it seems not. She’s specialized in connective tissue disorders – unless of course the cardio test results excluded POTS. I’ll see what they say at her next appointment with the connective tissue disorder orthopedist – maybe he’ll suggest someone for her ANS issues – and then whether the neurologist (specialized in POTS) will see her. I’m crossing my fingers.

    I will keep that reference! πŸ™‚

  7. Let’s hope for that. I can relate. Before my correct Dx, I felt I was seeing the world from outside the glass windows (for 12 yrs!). I didn’t fit in anywhere and the isolation and “shut in” lifestyle never helps. Fingers crossed again…

    • Sorry. I know. Not good. We had that appointment yesterday with an ortho surgeon. Yes, it sounded odd didn’t it – for EDS diagnosis Someone mentioned that at one point. Anyway, it’s a long short story. We are back to step one. Will write about it later today. Maybe it’s fibromyaligia – with hyper mobility. When I get quiet it’s because I’m not doing so well – and this is a set back because his recommendations are out of reach. He wants her to go back to school and start exercising – but she can barely stand or sit. F**K. Thank you for caring so much. πŸ™‚

  8. I’m so sorry. 😦 I figured something was up as I tend to keep to myself when bad news comes, too. Please don’t buy into a fibro Dx! That was my misdiagnosis for 12 yrs and fits nothing you’ve described. It’s a pain processing disorder, as you probably know, and fibro people seem quite “active” to me. EDS pain can easily be explained! This is way more than deconditioning, too. I had that for 6 yrs. (just skin and bones) and still had to get food for myself and drive a car!!! I was nothing like how your daughter is. I workout now, but that’s comparing apples and oranges. Your daughter is dealing with something else entirely, of course. It’s a comorbid condition for sure. What is wrong with these doctors? Anyone coming from France? Merde! I’ll wait for a post.

    Stay strong… This too shall pass.
    A

    • Oh no, he didn’t say anything about fibromyalgia – but here, it’s most probably the only diagnosis they will give her. I mean, her pain doesn’t come from nowhere… how can that be??

  9. Sorry… I got confused there. Fibro is the catch-all in the US for any female with any type of pain. I believe it is a real disorder, but vastly over-diagnosed. I just don’t get how everyone on WP can diagnose your daughter (more or less) and the docs are clueless??? You know my story–took going 1/2 blind to get an EDS Type II Dx (and I figured that one out and THEN saw then geneticist)! Thanks for liking my post, btw. Feel free to send bad Canadian docs to that lake resort, too. Lol.

    Have you checked the EDS videos on YouTube lately? There’s one with a toddler who can’t get up and lies on the floor/sofa all the time due to pain or being too tired. Don’t think toddlers can “make things up!” I thought of your daughter. I’d send the link but then you get the whole video post in here.

    Hang in there…

    • I think the fibromyalgia diagnosis is just a way for my doctor to say that she has “something”. The EDS diagnosis she says will be overlooked even if she puts it in the file because we need an expert’s input. Only thing is, there are obviously no experts in Canada. Our doctor diagnosed her with dysautonomia (odd how that wouldn’t need a neurologist’s insput). But anyway. And I will look for the child’s video on youtube. For my daughter, there were many little signs but the worst one had to be her jaw. It was awful as she would cut herself in her own mouth with her teeth. And you know, even teens don’t make this kind of stuff up. Do you know of a “normal” teen who doesn’t like to go out to high school dances and parties and everything else??? I’ve looked at your post and wanted to come back to it and reread it before I comment. I LOVE how you made use of the hippocratic oath! Last year, I taught Health Sciences to grade 12 and it was one of the first things I pulled out! And as a biologist, I stressed on “don’t assume you know it all or that guidelines are complete or accurate” – many of the kids in there are going to health sciences. I sure hope they’ll remember what I’ve told them and that they will become better health professionals – curious and open.
      Thank you as always for your comments! It’s becoming that when things don’t go well, I remember things that you have told me and how long it took for you guys to be treated or diagnosed. You and your vision – that is just so awful. 😦 And I’m truly sorry something like that had to happen. I sometimes wonder if being sick or having a hard time is what makes beautiful people such as yourself…

      • Oh, thanks so much for the compliment! You always make my day (night?). I had to deal w/my mother on the phone earlier telling me to start taking cabs if I can’t see to drive (oh, let me look in the motel’s recliner for $60/day). Dumb-dumb. I’ve been an empathetic person for a long time and it’s easy for me to put myself in someone else’s shoes. Must skip a generation. Being sick does make one even more so, or at least for me. πŸ™‚

        You need a week to read one of my posts, btw! I’m glad you liked the oath reference. I have one for optometrists in there, too. My well-trained allergist here–who sort of irritates me but is good–has the Oath of Maimonides right by the check-out counter. I didn’t know that you taught, as well. Good! They need teachers like you. I’ve just HAD IT with these doctors. I have MDs in my family and they are/were good doctors. Same with all the family friends who are/were doctors. I don’t understand any of this! I’m from a city with good medical care.

        One question–can you not see a geneticist or have you? Even though the gene for my EDS II has been identified, the sensitivity of the test isn’t good and it’s not covered by insurance. I chose to pass on it to not get a false neg. (and lose more money). I had a clinical Dx, which is what’s normally done (like with Type III), so I’m confused on that. Even this stupid city has several pediatric geneticists. I found an obscure geneticist w/training in EDS from Johns Hopkins in a nearby state as no one here deals w/adults, but most geneticists should be able to Dx EDS. Just curious what the issue is there. Glad you got the dysautonomia Dx–even if from a PCP. That’s so obvious w/your daughter from what I’ve read on it.

        Lastly, of course a teen would want a life! Don’t they get it? It just seems with her history since childhood, they would take this more seriously. Could Canada be worse than the crappy cities in the US? You may not go bankrupt except from the travel expenses, but you’re stuck on the merry-go-round, nonetheless. I talk to Brits and Aussies on here and zero complaints about their healthcare.

        Ugh! Long comment per usual. Oh, appreciate your comment about my vision. Thank you. It’s from the EDS but the doctors’ fault it got to this, hence the long post about it. I finally had a breakdown about it tonight (gee–took quite a while) as I was lost in Walmart–couldn’t see a thing and hate that store. I had to find something my PT recommended, so not my normal aisles and I just gave up in the blurry, distorted mess in the “sports” section. Just hit me that this is how I’ll see for the rest of my life. I’m thankful my CXL trial was available to avoid corneal transplants and that my “blown up” laptop gives me an outlet, but I saw fine 1.5 yrs ago. That led to calling the “mother” when I got back and then feeling worse, per usual! She needs to be exiled to a weird place, too. Ha ha!

  10. Yes for a geneticist. She saw 4 or 5 of them once when she was barely two. She was referred because of her seriously hyper mobile and asymmetrical jaw (which was corrected years later with the palate extensor thing and braces). They said she had crying baby face syndrome (what the f**k?) but that they would reevaluate a year later – she was never rescheduled for follow-up. For now she is on a one year waiting list to see a geneticist for connective tissue disorder in Halifax – the one-year wait is coming to term in August of 2013. Since this guy she saw is sort of on the same team, I’m afraid they will misdiagnose her again (if they expect her to have a heart condition – I think I will pass).

    About the financial burden, for me it’s more because she tried to commit suicide so many times and was so dysfunctional that working away from home is very difficult. My bank account is getting terribly low as I’m a single mother.

    Oh and tell me about mothers. lol I don’t think they mean to be that way – they just are. Lets just learn from their “behavior”. πŸ˜‰ Mine is legally and nearly completely blind but she acts like she can see and people don’t believe she’s blind (it’s sad but it works!). The worst part is that she has a bit of dementia and it can be very difficult. She’ll tell me odd stuff… and all. But she really supports me so I have to be careful not to criticize her.

    Sorry to hear about the Walmart experience. 😦 Hang in there!

    Hope you have a good day-night. Or is it night-day?

    • I would think that it would be easier to diagnose EDS (Type III) in a teen than in a toddler, so perhaps you’ll get that in August or so (let’s be cautiously optimistic). If you get that and already have the dysautonomia dx, then it sounds like you have the cat in the bag–unless you suspect something else. I know there’s a wide spectrum. My mother is barely symptomatic and then there’s me (and I have 2 brothers who seem fine)!

      Speaking of… She’s been emotionally negligent and verbally abusive my whole life. I just like to hit my head on the wall now that I’m sick. I never gave her any thought before as I was busy and had a life. I remember your mom is legally blind. The dementia is no fun, either. I have experience with Alzheimer’s–what a terrible mess that is. I sure hope you’re not the only caregiver!! Well, if she’s supportive, then that’s a plus (still looking for that one!). πŸ™‚

      Crying baby face syndrome–that’s a wtf! I imagine some doctor in a weird research center creating these bizarre “syndromes” so the other doctors don’t look like total idiots and can give a name to everything for the uneducated masses out there. Ha ha.

      I sure hope there will be a way for your daughter’s depression to get better. This is a problems w/the chronically ill in general and worse in those w/chronic pain. I know we’ve talked about this. I know that feeling of not knowing if she’s OK. Someone in my family is a recovering addict and and went missing due to the “couch surfing” lifestyle. I didn’t know if they were dead or alive and my former step-brother had just died from an overdose, not that we were close, but I knew him most of his life. It went on for a while… The calls from hospital ERs since friends knew I was up late at night. I had to take control of it (from afar) due to my negligent family and things are OK now due to rehab, etc., but I still worry in case things get overwhelming again.

      I so wish I could sleep like a normal person, btw–I’m a mess from it on the days I have to go to the Dr. or PT–like an achy zombie! Went to bed past 9 am and slept till 5 pm today! It sort of helps in a weird way as I don’t have to see the “real world” that I can’t take part in anymore…

  11. My daughter tends to have the same sleeping pattern or behavior as yours, especially in her worst moments. I have to work hard to keep her from that because then she has syncope episodes and so on without me being there to assist her.

    The anxiety seems fairly well controlled with the Seroquel. Our psychiatrist says that it seems to be more effective on patients suffering from anxiety alone than from psychosis. So she has the go ahead to increase her own dosage when she feels like she’s slipping and that works very well (she has 25 mg increments available).

    I don’t think they diagnose type III in Canada. I really don’t. I think if she doesn’t have MVP or anything else, she’s less likely to be diagnosed. About the chest area, my impression is that he feels that the skin is normally tight on that area and that’s what he relies on for skin elasticity But type III doesn’t have that skin variable and if it does, it shouldn’t be significant – otherwise type III is ruled out.

    A diagnosis is important to “protect” my daughter from society and to enable her to receive proper treatment.

    • A diagnosis is everything! You got that right. Type III is the most common, so how can they not Dx it? None of it makes any sense to me–it’s all in black and white in that link I sent. I can’t find a good source right now, but MVP (I believe) is seen in only 50% of Classical patients, where I also believe it’s more common. Oh, lucky me to get it. I believe the aortic issue shows up more in Type III? Doesn’t mean you have to have it. Just like most don’t get keratoconus. Most common in Type VI. Do they not understand the word: “spectrum?” So, so sorry about this. 😦

      On a brighter note… Glad the Seroquel is helping. That is prescribed in the US in an “off-labeled” fashion all the time and seems to be effective for many. Drug du jour. No personal experience–just what I hear from people. A ray of hope there!

      • I think they are just more comfortable with Marfan syndrome and vascular type EDS. I’m not sure how this happens. When I work on something (science or medicine) I like to have a broad outlook or overview of the topic. This is so far beyond my understanding – how can one treat patients and be so restricted in terms of knowledge or interest or curiosity?

  12. You said it–nailed it right on the head. I know you wish you had an MD behind your name right now and how frustrating it is. I don’t understand their narrow definitions, either. Why not follow their neighbors to the south? We seem to have some Marfan’s overlap in our DNA, for ex. I never mentioned it to the geneticists, but my mother and I can do some of the “tests” and my grandfather had a rather Marfanoid appearance (which does occur in EDS from what I’ve gleaned in the med. literature). I’m not tall and lanky like him, but I have spider monkey arms (lol) and teeny wrists and ankles. There’s so much overlap they almost have to take EDS “out of the box.” Where has D been? We need her “dumb doctors” category or whatever she files those posts under. I need to check on her.

    At least the science world has 1 good person… You! If you could ever go to the US, would the Canadian system even recognize a foreign diagnosis? I’m still hoping the geneticist will follow the standard diagnostic guidelines and finalize this once and for all. Sigh…

  13. If she were to have a diagnosis in the States, it would we respected for sure. I even think that if our family physician were to give her the diagnosis based on sound guidelines (like those of the NIH) it would be respected as well. If I were a doctor and came across such a difficult situation, I would specifically document my decision in the file. I think the problem is that they don’t know how to practice “evidence based medicine” (or EBM).

    I agree with the overlap that you mention. Furthermore, if I look at our own family history so many things were left unexplained – my father was terribly ill – and we are all somewhat connected but as you say with a different level of symptoms.

    • Learned a new word: EBM. Just Googled it. Risk vs. benefit in making a Dx. I love that you’re a biologist! I wonder why they don’t use this model in Canada? In the US, they misdiagnose and overdiagnose chronically. The latter is a huge problem here and more of a risk due to the drugs prescribed. Appreciate the info. I do hope that maybe the family physician can go off the NIH guidelines (or wherever they originated from). The NIH is a great resource here. Have a funny story about it from a former French teacher whose father, a research cardiologist, traveled frequently to the NIH but too long to tell.

      Interesting about the overlap in your family, as well. I bet this is quite common. My family (father’s side or non-EDS side) is such a genetic mess I thought all my ailments were from him until I stumbled upon EDS. Then my mother’s side looked just as bad. Now I’ll say, “We’re just at the mercy of our crappy DNA!”

      Off to bed (sun is up)… πŸ™‚

      • It’s not that they don’t use the model – I think they are just not curious enough and once they are out there practicing they don’t “look” any further. My guess is that they are (obviously) not relying on EBM. But U of Toronto has this cool website on the topic called knowledge transfer clearinghouse (KT clearinghouse) and it’s funded by the CHIR (important research Canadian funding body). Google it!

      • Per the site: The Canadian Institute of Health Research has defined knowledge translation as “a dynamic and iterative process that includes synthesis, dissemination, exchange and ethically-sound application of knowledge to improve the health of Canadians, provide more effective health services and products, and strengthen the health care system.”

        Sounds great in theory. I’m thinking this may be the bad side of a nationalized system as the gov’t (at least in the US) has no idea how to actually implement anything. πŸ™‚ Good ideas are great as long as they don’t just sit in a file (or on a website). Have I mentioned the Cleveland Clinic before? Only place in the US that has it figured out. They assign a team of specialists to the patient, thus cutting costs to patients/insurance companies while achieving top quality care due to the team approach.

        There you go… Let’s hope this will all be resolved in your daughter’s lifetime. Sigh.

        A

      • Agreed! Wish I could take my daughter somewhere where she would be cared for in the right way (a team rather than individuals that don’t communicate). Here in Canada, we’re far from getting anywhere it seems.

      • Absolutely! I strongly believe access to healthcare is a basic human right (make that functional, compassionate healthcare). It’s why I have no money, but donate the little I can to MSF each year!

        Just wanted to add that The Cleveland Clinic model was brought up by Obama during the whole reform process here, but then you’re dealing w/the big US gov’t and the 50% that doesn’t care. Not much has changed yet for the patient like me, but next year everyone can get insurance at least and no one can be denied, like I have been. Sorry–try not to bring in politics but it overlaps.

        What really irritates me is that from my understanding (need to research it more), Churchill implemented the NHS in England in the late ’40s, when England was a post-war, bombed-out mess. How could they pull it off then? Never hear any gripes from across the pond.

  14. Just wanted to say I hope you are OK and that you are on my mind. You aren’t blogging away like normal and I can’t find you in your regular spots on WP, so I think you’re in that little spot where some of us go when things are not good. Maybe you’re just busy or tired of blogging, but can’t help but be worried.

    I am always available if you need to talk, vent, etc. You can always drop a line on an old post of mine (no one goes there) and I can always delete comments. Just offering a lifeline if needed, as I sometimes wish I had one. If you already have one, then just count me as a second! If you’re taking a break, then just disregard this all.

    Alisa

    • Thank you so much for your kind words. I read your post early that morning and then I wept. It’s been difficult for many reasons and I feel so lost in this maze. There are some days when I feel like a bulldozer and others like a tiny little black sheep. I’m feeling better since yesterday – although still not myself – have seen our family physician and psychiatrist for my daughter and have sorted some things out – which of course are feeling really heavy. I’m busy but will be dropping by soon. Hopefully you’re doing OK. I noticed you wrote a few posts since I’ve been away. Can’t wait to read them. xox

      • Oh, now I feel weepy. 😦 I know it’s a never-ending roller coaster ride. I’ve been ranting–like screaming–in my “room” here due to the ongoing saga w/my idiotic eye doc (and leaving more stern messages due to a records fiasco now). Being a bulldozer is exhausting (current state) and the teeny black sheep isn’t fun, either. Can we just get a break? I almost lost it in WalMart (hate that store) today, if that helps. I threw a crap-fit but held in the tears (dry eye issue helps). It was due to the a-hole who gives me a ride or 2 and is so mean/moody, but I can’t afford taxis and no good transit here. I don’t let people treat me that way, but I can’t see to drive. It’s awful! You just have to keep breathing and I try to not even think about tomorrow. It’s too overwhelming and part of this whole, crappy ordeal. One day at a time…

        My father taught me that asking for help was a weakness, so I do this on my own (aside from the ride I don’t want), and sort of get that impression from you. Not sure. It’s made me stronger, but makes life harder. I don’t trust most people, either (as I’m blabbing online). I don’t know who to ask for help and have trouble taking it, but I’m very good at helping people, probably because people have leaned on me my whole life. So, I really do mean what I say. Just drop by whenever you feel up to it–no biggie and my last 2 posts were on keratoconus, anyway. Everyone dropped like flies with the last one. Good! I like to know who my friend are, you know? Anyway, you have bigger fish to fry right now and I’m glad things are sorted out a bit. I’m a loyal person by nature and tend to worry, so I figured I better leave a note on the door for you.

        Hang in there…
        Alisa x

      • And yes, about not asking for help. It’s not good – especially not now. Once, someone told me, not too long ago and I don’t remember in which setting but it was of the order of “Oh, you’re a caregiver”. And I guess I spend my time caring about others: my youngest daughter, my mother who is legally blind, and my uncle who is deaf. Not sure anymore if that is a good thing or a bad thing but when I need help it seems like I don’t know what to do.

      • Right there with you. I’m starting to do that on WP! I don’t consider checking-in on you an issue as we help each other out, but I tend to get what I call 90/10 relationships (they get 90 and I get 10 or less).

        I have all these bloggers that I chat with, but it’s about them and their blogs. I ditched all the 90/10 people in my real life and here I am being the person everyone leans on in Blogging Land. Trying to ditch these people now. Well, there are givers and takers and we have to find a balance to stay sane. It’s very frustrating, but I know it’s because people see me as efficient and strong, so they know I’ll be there. Work in progress, right?

        This came to my notifications box so can hardly see the text–excuse any typos!

        A

  15. Maybe some of the 90/10 people are not all takers, perhaps some just don’t know what to say or do because you are so smart. Really. I find myself giving a lot of advice and help with little in return and maybe it’s as you say and they view us as “efficient and strong”. But then today, my uncle was bragging to someone about how smart I am – but at the same time he says he’s worried about me because of the “overload” in my life . At this point, he can’t do anything for me. Am I making sense? Tired… I’m going to bed while you’re doing your “day/night” thing! xo

    • I think there are people like that, but I tend to get the 90/10 takers. I’d give the older crowd a free pass, though. These are mainly people around my age (late-30s) and the bulk I got rid of were all very similar. They tended to call me when they were driving home from work as I’d be home, of course. Then they’d kvetch about their life for the 1 hr commute and then ask how I was, but right as they were pulling into their parking and had to get off the phone. 90/10… More like 100/0! I would be the one to help them with all their garbage (what was really so bad about their life?), but one was a doctor so I don’t think it was an IQ thing in my case (but thanks for the compliment). She pretty much hung up on me when I told her about my eye disease, as I’d gotten the Dx that day and still took her call that evening, which I shouldn’t have due to my mental state. Long story, but got rid of her after that. Yes!

      It’s something I need to work on. It goes back to not wanting help from anyone b/c then I owe them in my mind and ending up with friends in the past that I never liked. If I ever get out of this city, I’ll look for people who can deal with my health situation and have a 50/50 friendship. I need to just be strong for me and that’s exhausting enough!

      On my nocturnal schedule as it’s the weekend… Nighty-night.

      Alisa x

      • You are so young – now i’m jealous! I’m late 40’s … already. Although I’m often told I look 34 at the most (which is good right?). And by the way, that story of yours about the “doctor” friend – I wondered if we once had the same friend… I had the same – but mine was an opthalmologist (ironic eh?) but outside doing tons of cataracts a day (like 13) – she was really crap. My mom had a stroke, lost most of her eyesight – aside from having Drusen – and she (doc) couldn’t read the MRI. I told her there was something wrong and that she had to speak to a colleague because I couldn’t interpret it – she had said it was normal (double yikes). They are not all smart – but of course we all know that (dont’ we?).

      • I feel 100 if that helps and I’m almost 40 (boo hoo). Better to look young (and feel young) and have the wisdom of an older person, I say. I relate best to those older than I am so no wonder we get along!

        Your “friend” sounds very much like my “friend” and I never even wanted to be friends with her! We’re related, but not by blood so really long saga. I don’t understand how a doctor can have no empathy at all, especially for a “friend,” which these types are not! That’s really terrible about what happened when you needed her for your mom (I do know you said she lost her sight after the stroke). I have a hunch you probably helped her out in many ways… By being a sounding board, someone to lean on, or whatnot. That’s the 90/10.

        I think the caregiver side of you is something to be admired, but it’s a thankless and tiresome job and I’m glad your uncle recognized you. You ARE very smart (and funny!). You’re in an rare position of being a caregiver for the generation above you and below you, unlike someone who is just raising kids and has a sick parent. That is exactly why you need to have a voice and get your message out. The woman who kept telling me to blog said, ” You have a story.” Well, lots of people get sick–maybe not at 27 like me, but your story is rather unique, even though I know you’d rather not be stuck with the story you got.

      • Funny… you sound just like my 17 yo daughter going on 30. πŸ™‚

        The friend thing didn’t really bother me at the time – I remember wondering how she earned her medical degree (but then both her parents were doctors so there may have been a connection there).

        Being a caregiver is difficult because I always feel like like have to yell out rather than speak for people to listen and understand. I wish I could change my life for sure (hey, I think i read one of your posts on swapping…) but then maybe there’s a reason why this is happening to me. Someone told me not long ago that we sort of make the life that we have. And I think that’s true to some extent. If I didn’t care for my daughter I’d put her in a special care facility – until they figured it out. But I can’t because I know she wouldn’t want that – her life is bad enough as it is without having me by her side. She’s attached to me by a cord…

      • I hear you. I struggle with concepts like fate, things happening for a reason, and whatnot. I’ll probably never figure it out, hence the name of my blog!

        Also, I wish I were 17 again… Lol! I didn’t live at home much due to my family and always worked, but had such good times with my friends then (and no sickness in sight). We really should be born old and end up young.

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