PREMONITIONS & REALITIES

Photo Source: http://www.novedadestarot.es

Years ago, I needed a bottle of essential oil to ward off the desert spiders that had invaded my former rental.  I found it at a store that sold odd herbs, good luck charms, amulets, candles, things pertaining to black magic, and items usually used by fortune tellers, or psychics as they’re referred to nowadays.  There had been a sign in the window that there were psychics available, but I really couldn’t justify spending money I didn’t have on an unproven science, although I was curious.

So, I perused the hamsas and evil eyes after I grabbed my oil and then a woman with wild, blonde, curly hair came out from somewhere and looked at me and then started to talk. She had noticed my necklace and told me she was a Russian Jew.  I said that I was, as well, or at least most of my father’s side came from there.  Wouldn’t she know that if she were psychic? She rambled on a bit, presumably to get my business and then left while saying, “Jews are very psychic,” to which I replied, “Well, I’m not.”  I paid for my oil and never went back to that store, but I go to a shop in the same complex every couple of months and think about that comment.

I get premonitions.  When my paternal grandfather was dying in the hospital, I visited him every night after work.  He was on a respirator and pumped full of morphine and every breath sounded like his last, but I knew when he was going to die. No one had told me that it was probably his last night and he looked the same: a comatose body in a bed in the ICU, but I knew.  On that last night, I kissed him on his high forehead, not so different from my own, and said, “I love you, Papa.”  He died early the next morning and I wasn’t there, but at least I got to say goodbye.

When I was young, I had this premonition that the number 22 was bad luck.  On the 22nd of that month, my brother and his friend were sliding down our staircase on vinyl pillows—a rather stupid thing to do—and my brother’s friend didn’t land right and broke his arm.  That was just the beginning of bad luck with the number 22 and I wouldn’t even fly on that day. When I hit my head this January, it was on the 22nd.

Oh sure, most people probably can relate or have had similar experiences—I never claimed to be psychic if you recall, but I wish I were.

But, one premonition that came to me within the last 10 years seems to be coming true, once again.  I said that I wouldn’t make it past a certain age: a milestone birthday which most people dread that is just around the corner.  I’d make it to that age, but not any further.  Do I care?  No I don’t, as long as my cat is okay.

You might wonder about that.  Life is so great; there’s so much to do and so little time; there are friends and lovers and soul mates; there is travel and adventure.  That’s not my life anymore.

My life starts the same everyday and has for the last 13 years: I wish I’d died in my sleep as soon as the alarm wakes me up from my medication-induced shallow sleep and the chronic pain hits me like a ton of bricks.  The pain feels like someone took my skin off, shrunk it 4 sizes too small, and put it back on my body so that the muscles and fascia are literally bruised to the bone from the compression.  I have to get out of bed and move and try to see with the new vision I was also blessed with.  I need hours in a recliner with a down pillow to get my pain down to a level 7 on the 1-10 scale, but I have to keep getting up, moving around, and stretching or it just gets worse as my muscles chronically go into spasm. I have to figure out what to eat when I’m down to less than 10 foods, and I’ll still break out in painful rashes and my GI tract will be a mess all day and night.  And at some point—usually after midnight if I don’t have a ridiculous appointment, I have to shower and deal with the upkeep that a human body requires unless you want to look like the vagrants in the parking lot here.  Then, there are the chores that are so hard, like cleaning my 300 sf room here at the motel and using the laundry room down the hall.

Most people do all this everyday without a second thought.  I know, I used to do it too, and I worked more than full-time and went to the gym and hung out here and there and had friends that I did things with.  But, now it’s sheer torture to just get through a day filled with nothing.  There is no meaning in a life without purpose and to stay alive, whatever that even means, just to live everyday in a body that’s a torture chamber is beyond my comprehension.  And if anyone thinks there’s a meaning in any of this, I’ll let you know right now that there isn’t.

However, I try.  I’ve been trying since 2001 and while I manage to make it through this same routine, or add more fun to it by throwing in the painful sclerals if I go out, doing errands, rushing the routine to get to an appointment, driving a 5-speed with seats that feel like they’re made out of concrete, and on and on, I’m so very tired of it.

I forced myself out tonight, in fact.  It’s been a bad week, month, year, decade, 13 years.  There was yet another shooting around the corner off a street I refer to as The Jungle.  Gun violence hits way too close to home for me and the PTSD I never wrote about gets triggered and everything goes haywire. Then, a guy who stayed at this motel the 1st time I was here came back—fresh from being released from a mental institution, which is where he should have been for life.

Back in late 2010, he was my neighbor and threw me from one side of the hallway to another after I got on him about all his illegal activities and highly annoying behavior in here.  He also destroyed at least 3 rooms in this motel, had a huge Rottweiler at one point that was anything but trained, got his ghetto cousin and mother, who was an old prostitute, a room in here as well, and the general manager could have cared less.  He only left when the rent went up and most of his type of people couldn’t afford to stay, and I left a few weeks later as I’d found a cheaper and seemingly nicer studio down the street which later became a sea of raw sewage, but this guy left owing over $4,000 in back rent and damage.  Well, seeing that the GM has some sort of white guilt and just feels so sorry for this poor, half-black guy and his phony sob story of being a combat veteran which must be part of his delusional disorder, he’s now back and if I could see like I used to, I’d buy the .380 I had 20 years ago because I apparently could have been a sharpshooter I was that good.

But, I digress.  I forced myself out tonight.  I had to do a few errands and thought I’d stop at a relatively inexpensive clothing store and perhaps cheer myself up by buying a new top that wasn’t from the thrift store, and I rarely even do that.  I found a couple of things after a lot of searching because I’m picky and don’t like cheap looking clothing and extra small is not a common size in this town.  The prices were too high for synthetics and cotton blends, another favorite down here, and I sure wasn’t paying for a label at that store, but I headed to the over-lit dressing room, regardless.

And there I was in the mirror and I had my sclerals in.  The old, gaunt-faced skeleton covered in black bruises and aubergine purpura and a venous pattern like a road map all from Ehlers-Danlos syndrome.  Everything looked awful because I looked awful.  I wanted long sleeves to hide the blue veins and hundreds of weird wrinkles stacked on my elbows due to the faulty collagen in my skin.  I wished I could wear my winter gloves to hide the acrogeria on my hands that makes them look like an old lady’s.  I only like V-necks, but all I could see were the bones and veins in my chest and my neck that’s so thin and vein-y it looks like my head is too big and that it’ll snap in half at any moment.  That was enough.  I know what I once looked like.  I remember being attractive and normal and that was stolen from me like everything else.  No wonder someone found my blog by typing “Ehlers-Danlos freaks” into Google.

So, I bought a long sweater with a hood that wasn’t worth $30 bucks—when it’s already warm here and will be 115° soon.  I went to my car, got on the freeway with the cars speeding past me at 90 mph, and cried the whole way back to the motel with the mashugana who just got out of the cuckoo’s nest on the top floor.

I have a joke with the staff here that the only way I’ll ever get out of this motel is in a body bag.  It’s a family legacy: my paternal great-grandfather died of a massive heart attack in his suite at the Biltmore, where he was residing while doing business in another state.  But, at least he died in the Biltmore and not a 2 star motel that now serves as a halfway house for mental patients.

My, what a confusing post.  It’s going backwards and forwards and sideways, rather like how my brain is these days.  It’s no secret that I don’t like blogging.  I already tried to stop once and even wrote a post that I was, but quitting is for failures said my father long ago, and as all I’ve done is fail since getting sick due to my body being some degenerative thing that I’m just stuck in, I forced myself to keep going.  I had my search engine crowd who needed information and then I met bloggers along the way, which I didn’t even know was part of blogging as I’d never really seen a blog until my youngest brother created this very blog for me to document my corneal collagen cross-linking experience—and that I have done.

To tidy up this ridiculously long and rambling post, which happens to coincide with the one year anniversary of the death of someone I cared about very much and is just adding to my depressed state, I am bidding adieu to my blog for now.  I may be back in 2 weeks and I may never be back, but I need a huge break from it and from WordPress and this unsettling feeling of giving so much of my time to others on here and getting very little in return.  To the very few people who have been a friend on here, I thank you and am sorry I can’t be there for you right now, but I can feel the sand trickling through the hourglass—that old premonition—and need this time to focus on myself and fold my cards if all else fails.

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79 thoughts on “PREMONITIONS & REALITIES

  1. ShimonZ says:

    Those milestone birthdays give a lot of people premonitions… Sorry you feel so bad. I do hope that you’ll have a few good surprises along the way. I’ve been in the pits myself, and then stumbled out to find a taste of heaven… life is a roller coaster ride, and we never really know what’s next.

    • I’m sure they do, but I’ve had so many premonitions in my life–I just couldn’t write well yesterday and had to post that monster in one night. Aside from the premonition and a million other things, my biggest issue by far is my health, which literally keeps me confined to a room unless I’m forced to go to one of those useless appointments you’ve read about. I do understand that life is a roller coaster–before I got sick there were lots of peaks and valleys, but there was hope things would turn around and I had free will, so I had control to some extent. When you’re chronically stuck in the valley and can’t get out, then I just don’t see the point. Well, I don’t have any regrets about my decision on here or anything in life, aside from losing my health so young.

      Happy (early) Passover, Shimon. Take good care my friend…
      A

  2. Sarah says:

    Wow, I don’t know what to say. It certainly puts things into perspective for me.
    I guess you might not read this if you’re giving up your blog but I wish you peace.

    • Thank you, Sarah. I’m still getting my emails on here so caught your comment. Well, you’re not alone in not knowing what to say. In general, people have absolutely no idea what the reality of my life has become since I got sick 13 years ago and I suppose I got tired of it, so I chose to not blog anymore as it’s so hard for me and I usually feel like I’m talking to a wall. I appreciate the fact that you left a comment–it really speaks volumes.

      It was nice getting to know you briefly. Take good care across the pond…
      A

      • Sarah says:

        I’m sorry your blogging experience hasn’t been a happy one but I’m glad you had it, otherwise I wouldn’t have “met” you and heard your story. I’m sure there were plenty of people who read your blog who left with more understanding, even if they didn’t respond to you. Maybe there are people out there who are a little kinder because of you. And maybe it helped you a little to let some of your frustration and so on out into the ether.
        It was nice to get to know you a little too. Email me directly if you like. I can’t do anything but listen but maybe you’ll need an ear now and then. You take good care too.

      • Aw, thanks. It was nice getting to know you, as well. I’m never one to burden people with my problems, so no worries about emails at odd hours! You know, I have a good-sized crowd who finds me via the search engines and for that I’m grateful. People want to know what this corneal surgery I had is like and how the follow-up goes and many want to know about the connection between my genetic disorder and keratoconus (said corneal disease). So, in the end, I did what I set out to do. My career was in the non-profit sector (NGO), so I think helping anonymous people out on the web is great–and I loved seeing all the flags from around the world. 🙂

        Take good care…

      • Sarah says:

        I’m glad there was a positive side to it for you.
        It’s nice to see how global blogging is, isn’t it?
        Best wishes. 🙂

      • Love the global aspect. 🙂

  3. I feel a little 😦 but you need to look after yourself. If anything you have made me aware of EDS even though I am still humming and haring about if any of the signs relate to me.

    • Thanks, Karleigh. I’m sad about it too, but it’s just not working for me right now. I only follow the original bloggers I connected with way back when and am still following you, but I’m not sure if I will be involved with WP at all anymore. :/ I’m glad you know about EDS just in case–I didn’t get sick from it until 27 and had no clue it was hiding in my genes. Let’s hope you don’t have it, but in the event that you do, you won’t be wandering around for 11 years not knowing what’s wrong with you. I hope your KC journey stays as manageable as possible…
      A x

  4. cissyblue says:

    Hello my dear A. Sorry I haven’t been visiting lately. Depression is a nasty thing. I think I felt so much kinship with you and your precious kitty. i just read this post above, and I just want to say one thing. Whatever you may look like, means squat to me. I think you are the most lovely woman I have had the pleasure of meeting in a very long time. Your heart is huge, your mind is a steel trap, your humor is irresistible, and the realness and directness from which you write is stunning, it captures your total attention. I hope you never stop writing, whatever you might feel like exploring. I want to start coming back again, not to let fear and sadness rule my life. Thank you for being the wonderful kind and engaging person that you are. And if you ever do leave us, it will be a very sad day indeed. With great love and great empathy, your friend down in Texas, CissyBlue p.s. you really are a darling wonderful girl, I only wish we lived closer so I could visit you on a regular basis. I’m sure we could find plenty to talk about and a lot more to laugh about as well. Good luck Miss A, you are beautiful, yes you are, so very very beautiful! I love you, Cissy

    • Thank you, Cissy, for your beautiful comment. I think I’m just done with WP, but I’m so glad I met you along the way, as well. I wish we were closer–a big issue I’m having is the anonymity of the virtual world and it’s not what I need and is making me feel more isolated in all honesty. I wish we could spend time in comfy furniture chatting late into the night–I can’t find anyone like that locally or anyone that shares any of the interests that I once had. It’s like I live in the city of the dumb and dumber. :/

      I’ll treasure this comment of yours that lifted my spirits and know that you and your blog made a lasting impression on me, as well.
      Send love back at you,
      A ❤

      • cissyblue says:

        A = if you ever want to get out of that city where you are, I have a farm and it’s gonna be awesome, I have help now, the best young man ever, so if you ever think you can handle Tejas, my door is always open forever honey. I would spoil you rotten! Believe it! with all my love always yours, forever now and after, Cissy

      • Aw, thanks. I really need to stay where I am for now and hope to get back to the CA desert in time as the medical care is much better there. I literally can’t function in any capacity if the humidity is over 30%, so stuck in the desert for life. I so appreciate your big heart, though! xx

      • chloezub154 says:

        Have you mentioned where you’re from? I’d love to help if possible.. In the real world 😉

      • Aw, thanks. I don’t reveal my exact location on here for various reasons. I’m in the American desert but not from here (humidity makes my pain go through the roof). I don’t think the locals are even literate enough to have a blog. Yikes. :/

      • chloezub154 says:

        I get it 🙂 I wouldn’t want to say either… though I probably already did :/ Be well, ok? I will think of you, and hope you are 🙂

      • No, you didn’t say where you are–no worries. 🙂 You be well, too. It’s been a really bad month, so I hope May will be better.
        Hang in there…

      • chloezub154 says:

        Michigan. ha! 😉 Bad month here too…just about done..I seem to say that a lot :/ At work today…and it’s my day off… because my boss is a SOB who demands more than I can produce anymore. getting old. But I need to pay my bills…. be well (er) 😉

      • Sounds freezing. :/ I’m glad you can still work, even if your boss sucks. Losing your income and identity–if you identify yourself by your career like I did–is really tough. I lost my salaried career due to my EDS before I was 30 and tried the part-time thing in my field for a few years and just got sicker, so it’s SSDI (disability) city over here, which I’m convinced pays less than welfare. What a country this is… Sure hope you don’t end up with my story due to your health.

  5. cissyblue says:

    Reblogged this on ephemeral spirit and commented:
    Every so often, you run across a really exceptional person. Maybe she might be very different than you would normally expect, but that very difference is what makes her completely unforgettable. With great honor and pleasure I offer up this post by the truly amazing Miss A!

  6. dyspatient says:

    I’m so worried for you with the crazy guy moving back in. The rest of it is troublesome too, but that one really stands out to me as a red alert. I don’t blame you for feeling keyed up. 😦 I wish there were something I could do.

    • I know, D. My anxiety has gone through the roof over the last few weeks and my somewhat safe spot (rather laughable) is no longer. I really feel I’m just done with my blog and WP, or for now at least, but I’ll still get my comments through here if you need to chat or vent. I’m the loyal type as you know. 🙂

      Take care and would love to keep in touch,
      A ❤

      • dyspatient says:

        😦 I’m so sorry. do you have contact info on your blog? I’m gonna go check.

      • Negative and the Gmail account I created for my blog doesn’t work. I remember you had wanted me to contact you ions ago and I did, but never heard back. Then, a couple weeks ago the big KC blog/blogger wanted to ask me something off of WP so I used Gmail again and she couldn’t get the messages. What did I do? Who knows, but water under the bridge. I have an alternate way to contact you, so will try that. 🙂

  7. chloezub154 says:

    I never “talked” or commented on your blogs… And I’ll admit I’ve been too self absorbed in my own stupid pain to “catch up” on things like someone’s life story, cleaning the house, paying attention to anyone, just self absorbed and like most of us know sick of going to useless doctor appointments. I no longer go.. Yet another waste since they just don’t know what to do with me besides throw pills at me, which I throw back. I know what that feeling is like… The sunken valley that is doubtful I will climb out of.. And why bother.. I’d be doing my family and husband a favor… My just being done.. I say , It’s just SO stupid, so many times in a day… I have NO idea how I’d deal with my skin hurting the way you described yours… And I really hope you will keep your blog up so I can go back and read. I guess I want to apologize for not commenting and reading earlier… Maybe I could have helped someone. I know it sounds silly… I don’t blog. Don’t even know how… But my heart hurts for you.. And I do know of ALL of the blogs I erased after getting overwhelmed in my “research” for what the heck is wrong with me” since I now seem to be my own doctor, I DID keep all of yours in my “to be read” file ;). I don’t know what else to say… Except I’m sorry I let you down , and myself down, for not connecting with you. Sometimes it helps to talk to others.. Takes my mind, at least, of myself.

    Dona

    • Aw, Dona…

      I totally appreciate your comments and we barely just met! And you didn’t let me down… There have been many others on here in the past who I’ve helped out A LOT and they disappear or never stop by my spot and I got sick of it. No worries! Also, thanks for the reblog. I only post my own work, but I think you did it right?! Yes, I’m about the same age as you and tech-challenged. Lol. When someone clicks on my post from your blog, it redirects back over here. 🙂 My keratoconus posts are relogged by a big KC blog out of Great Britain and the blogger just leaves a comment on my post saying, “Reblogged on KCGB” or something. No biggie–it’s an honor and you’re spreading awareness, regardless. Blogging IS exhausting when we’re sick–I speak from nearly 2 years of experience. I also understand what you’re going through as I’ve hit rock bottom but keep going for some reason. I am “just done,” as well. SO DONE!!! I don’t understand chronic illness and never will. 😦 Oh, just so you know as I believe you do have EDS, my skin doesn’t actually hurt (aside from looking so bad)–it’s the myofascial pain which I can only describe as my skin being shrunk 4 sizes too small and compressing my muscles. I have no idea how else to explain my EDS pain! :/

      I will still get emails via my comments on here and if you need to chat, feel free to leave a comment on any post. I’ve done loads of medical research on EDS, so hit me up if you need to. I don’t have public email, but offering one way to chat if you need to talk about whatever.

      Take good care my new friend and if I ever start blogging again, I hope to get to know you better.
      A ❤

      • chloezub154 says:

        That’s sounds like total awful non stop pain to be blunt. I’m imagining the one time the dermo gave me some treatment on my face.. And it was so tight it hurt… But mine went away :/ guess nothing can be done for yours? sorry.. I need to add Looking up eds..I’ve heard it before… But never looked it up. I’ll add it to my to do list… Which is REALLLY long :/ too much research and getting nothing accomplished… Frustrated. I’m mad we just started talking :/ and now you will be gone… I like ya 🙂

      • I know! I’ve been on here for almost 2 years, but really need a break in a bad way.

        I thought you had Ehlers-Danlos syndrome (EDS) because you found my blog and have a blog about gastroparesis, which is rather common in EDS. Now I’m confused! EDS is a genetic connective tissue disorder. It cause problems with collagen and most people have debilitating pain–hence the pain in my muscles, etc. Maybe it’s more like I’m chronically run over by a truck. :/ Pain is so hard to describe. Well, you’ll know if you have EDS rather easily and here’s a website with info and Wikipedia has a good explanation. http://www.ednf.org

        You should try to write some posts about your health issues. You never know who might read it and say, “You sound like me and I have X disease.” I found out I had EDS after learning the keratoconus I developed was seen more in EDSers and after seeing a geneticist, voila. I had previously been misdiagnosed for 11 years. Hang on to hope and it does suck that we have to be our own doctors, but it paid off for me even if there is no cure. Having the correct Dx is everything I find. Hang in there!

  8. […] PREMONITIONS & REALITIES. […]

  9. chloezub154 says:

    I have NO idea how I found you…lol.. FB is much easier :/ and I can barely do that most days lately… my pain is in my belly…and flares from stress (work, boss, daughter, not being able to deal with MY hand I was dealt :/ ) have me just doing NOTHING. And that’s not good. I come to work, I go home. Just blah :/ I will get there though… gotta tell myself that right? I should write about my stuff. I did for a bit on Inspire. But a lot on there aren’t into INSPIRING ppl..lol. I don’t need any negative…I have enough of that, and I bring it on my own self as well. I’m my own worst enemy by far :/ I vomit when I stress… I got sick of “keeping up” on Inspire… and I do go on FB, one group in particular I like… it’s positive, and natural helpful ways…which when i DO them, they DO help… 😉

    • Hmmm. There are loads of GI issues with EDS, so worth looking into I think even if the rest of you seems okay. I don’t do FB and never have. If this blog is social media, then that’s all I do. I went to a local support group for my stupid misdiagnosis and it was AWFUL, so I tend to steer clear of anything like that as I find people are anything but supportive. Good riddance. I did like blogging at first, but I’m an A-type and it became a full-time job and then I felt there were people who I invested way too much time into and I can’t do one-way friendships anymore (and never should have). Well, I’m glad you have your one FB group that is positive and helpful! I’ve removed as many negative people from my life as possible and am not looking back. Being sick is hard enough.

      • chloezub154 says:

        Exactly!!! I found NO support for the most part in the groups… And no one wants to hear what I found this helpful… Etc. very negative and catty. I went to high school.. No thanks 😉 and YES being sick is enough of a downer 😉

      • Yeah, I know. I had the same issues more or less on WordPress and so I’m done with blogging. I hope I can find people in the real world who get it and can deal with my limitations (no luck in 13 yrs), but I’m just done with the laptop that makes me achier and is too hard to see. :/

        Take care and hang in there…

      • chloezub154 says:

        You too .. Please update once in awhile.. Still need to backtrack and read all posts 🙂 stress lately has done me in… Again :/ I’m so sick of saying that 😉

      • I’m pretty confident this was my last post as it wasn’t working for me. My posts are rather specific to either EDS or keratoconus, but if they help you at all, feel free to peruse. 🙂

  10. Hello there–
    It seems like you are probably off this blog for good, but I just wanted to thank you for coming by my blog. Wishing you the best.

    • You’re more than welcome. I have stopped blogging, but my blog is still active if that makes sense–and once in a blue moon I go through the reader. Your post made me pause since so many of us with EDS were misdiagnosed with fibro for years, so I figured I’d just throw it out there, although the criteria seemed rather hit or miss for me until I saw the geneticist.
      Wishing you the best, as well. 🙂

  11. Haven’t heard from you in a while, I hope you start to feel better… thinking of you

    • Aw, thanks. I stopped blogging actually, but still get my comments as most of my readers are from the search engines. It just wasn’t working for me and I felt that I had accomplished my goal in telling my story regarding the corneal surgery I had via the clinical trial.

      I hope you are doing as well as you can. Same ol’ story around here, but what can I expect with EDS? Chronic illness just sucks.

      Take good care and thanks for dropping by!
      A 🙂

  12. Louise says:

    Hi,

    I’m from London and find myself in Granada, Spain at the moment.

    I was randomly searching local beaches to go to with my family. I heard Playa de Los Muertos was good, so googled it and came across your blog (totally different playa, same name).

    Your intro sounded like a message in a bottle and I was compelled to read it.

    I am so sorry to hear about the loss of your friend.

    I went on to read your most recent blog and I am also so sorry to hear about your illness and your decision to stop blogging.

    It sounds like you have already led a very interesting and inspiring life. I hope to find out more on your blog-back-catalogue.

    I also hope to read new blogs about new things you do; because you sound like you have an inspiring soul, even if the body it is housed in is letting you down at the moment.

    I found you completely by random chance, I actually never read blogs, so it is strange to me that I read yours, but thought you might like to know that you are not talking into the void and I have been thinking about you all day.

    Warmest regards to you and I hope you are feeling better than when you wrote this.

    Louise

    • Thank you, Louise, for your kind comment. I’m glad you found my “message in a bottle” in such a random way and left a note! Most of my readers are from the search engines, but most people don’t leave a comment, so I have no clue who they are–only the countries where they visit me from. 🙂

      I’m afraid I’ve stopped blogging–I completed what I set out to do and it became too much for me to tackle in the end. I really do appreciate your message and I did live an interesting and inspiring life until I got sick from Ehlers-Danlos syndrome at 27, and then developed keratoconus and vision loss about 3 years ago. It was truly like someone just pulled the rug out from underneath me.

      Enjoy your time in Spain and I’d say it’s worth visiting Playa de los Muertos in any country. 🙂

      Take care and thanks so much for dropping by,
      A x

      • Sky Dancer says:

        Hello! I have an 18 year old son. Long story about past bad medical care. However, yesterday we got stunning news about his heart. As I sat there, I wondered if the EDS which NONE of his previous doctors thought worth investigating, much less giving us information about, might be involved with this current heart situation. He’s only 18 years old.

        As you are originally from Seattle and we live on the coast of Washington, are there any GOOD EDS doctors you can recommend to us? Especially for investigating and safely treating heart issues? My son will have an echocardiigram next Thursday, May xx, 2015. I would deeply appreciate any advice you might have.

        Would like to talk more privately by email, if possible.,

        Thank you VERY much for creating this blog in the past. I hope your present is going as well as it can. Glad the keratoconus surgery helped some.

        Life can be a real bear sometimes.

        Sky

      • Hi Sky,

        Thanks for your comment. I actually stopped blogging over a year ago and I don’t have a public email, unfortunately. Here’s some info I can share, though. Due to how under-recognized EDS is, there are essentially no EDS doctors in the US. There are EDS-savvy geneticists, but they just diagnose, so it’s up to everyone with EDS to find competent specialists in various fields and then hope they’re willing to be educated on EDS (meaning we have to become experts on EDS while being so sick). Having said all that, I’m not sure what’s going on with your son’s heart, but major cardiac issues are not normally seen in EDS. Vascular (arterial) issues can be–especially in vascular EDS (VEDS/former type IV)–but for the rest of us, an echo will usually just show mildly leaky valves, possible prolapses (such as MVP), and/or atrial septal aneurysm, which I have (plus 2 leaky valves). In my case, these are all just being monitored by a cardio who doesn’t know that much about EDS. Many EDSers also have something called POTS, which I don’t have, but that won’t be picked up on echo and isn’t a cardiac condition exactly. It’s due to dysautonomia and is often seen in hypermobility EDS (HEDS/former type III).

        Per Seattle, I left over a decade ago and am not familiar with any doctors up there, unfortunately. I know the names of the geneticists at the UW who diagnose EDS, but have heard mixed reviews on both (I have never seen either of them). Based on what I’ve heard, I doubt that even I would get a diagnosis as I fail the Beighton scale, which is a very outdated way of assessing hypermobility/diagnosing EDS. Additionally, I have classical EDS (CEDS/former types I/II), which has issues unrelated to hypermobility, as well as issues from hypermobility. I hope that makes sense. But, perhaps that’s the best place to start and there will be a wait list from what I’ve heard. Also, Dr. Byers is one of the few VEDS specialists in the US, so if your son meets the diagnostic criteria for that type, he may be your best bet. My fingers are crossed that he doesn’t. I’ve heard he’s not great with other types of EDS, so Dr. Mitzi Murray would be a better choice if that’s the case. Here are some links and good luck to you and your son. Also, if your son does get an official EDS diagnosis, there is a Facebook group in Seattle or Washington state (?), but you need a diagnosis to be accepted to the group, apparently.

        Best wishes…
        A 🙂

        University of Washington:
        Dr. Peter Byers (VEDS)
        Dr. Mitzi Murray (other types of EDS)
        1959 NE Pacific St.
        Seattle, WA 98195-7720
        Phone: 206.543.4206 (Byers) 206.598.4030 (Murray)
        *I believe this info is current

        VEDS diagnostic criteria (per Dr. Byers):
        *I have a lot of the MINOR diagnostic criteria (including the strange skin), as do many EDSers, so I really think the MAJOR criteria is most important in assessing VEDS. People tend to freak out about VEDS, so take your time with this. I had the genetic test and it was negative. Again, it’s the aorta that’s often involved, so not the heart, per se. Lastly, keep in mind that VEDS is very rare: 1:250,000.
        http://www.ncbi.nlm.nih.gov/books/NBK1494/

  13. Sky Dancer says:

    Thank you SO MUCH for your kind reply. I knew you hadn’t blogged or replied to anyone in about a year, so I am very grateful that you did so for my son’s benefit. The doctor thinks its an ASD and said other very scary things for an 18 year old with all sorts of plans for the future. Plans that don’t include dying young.

    We are all still shell-shocked by the news and hope to get further, hopefully better, information after the echocardiogram is done and we receive the results from it.

    God bless you for replying to my comment,

    Sky

    • No worries! I rarely get comments nowadays, but I do reply still. 🙂 Per the ASD (if a PFO, etc.), you may want to look into Loeys-Dietz syndrome, although that’s just a more common finding in that particular genetic connective tissue disorder and people with LDS tend to have dysmorphic features so I may be in left field. It also has more vascular issues, so LDS tends to be a rule-out for VEDS and it sounds like that’s not what your son is dealing with. But, some people originally diagnosed with EDS end up having LDS, so worth looking into. However, there are also EDSers who have ASDs. That’s where a good geneticist comes in! I’d try to not worry because some docs just scare people for no reason. I went through that with some autoimmune issues and my keratoconus, which is scary enough as is! Anyway, I’m still trying to figure out if my atrial septal aneurysm (ASA) is considered an ASD, or if it only gets that classification if it were to rupture. Regardless, from all I’ve read, ASDs are repairable and most are present at birth (as was the case with my ASA, unbeknownst to me). Another thing to consider is if your son does need surgery and your insurance covers it, Cedars-Sinai in L.A. has a genetic connective tissue disorder clinic and they do have at least one cardio there. I can’t pull up their website for some reason. If it were me, I’d prefer to have an EDS-savvy surgeon due to my surgical/healing complications from CEDS. But, Seattle has always had very good healthcare, so I think your son would be in good hands up there. I live in a medical wasteland, so have had to travel to L.A. for surgery.

      Feel free to update about your son’s Dx…I know all you write is open to anyone online, but I do get a lot of hits from the search engines and you never know who it’s helping.

      Best wishes again!
      A 🙂

  14. Hussain A. says:

    Hello, I came to this blog via searching something about dry eyes. I was wondering if you have tried Pilocarpine? It is from one of the pilocarpus plants and helps with Sicca symptoms by generating more tears, saliva, and as a side effect more sweat.

    • Hi Hussain A.,

      The 1st med I was ever given was like the cousin of what you mentioned (called Salagen in the US). That one was Evoxac and it was awful and only worked for about 20 minutes, during which my eyes felt rather okay but I was literally choking on my saliva. I already sweat a lot, but do think I was sweating more (this was nearly 10 years ago). Those are both cholinergic agonists. I actually get overall relief from sicca syndrome via clonazepam–more my mouth than eyes–but then my eyes stopped producing tears following corneal surgery in ’12. Clonazepam isn’t indicated for sicca syndrome; it’s a side effect of the med that occurs in some people and is not the easiest medication to get and most docs don’t know that it can help, so rather frustrating. I’m really lucky that an ER doctor tried it on me years ago, though. I hope you find something that helps you out (and some people do okay with Salagen or Evoxac).

      Thanks for dropping by,
      A 🙂

      • Hussain A. says:

        I’m eagerly waiting for the day to finish as I got it this morning and will try it for the first time. I only found out about Sjogren’s, Sicca, pilocarpine a few weeks ago after 3 years of dry eyes and a dozen different doctors (in different countries). In NZ the tablets are not available so I convinced my specialist to prescribe me the eyedrops which I will dilute with water (standard practise in Australia who also don’t have the tablets).
        Yes I have heard many people saying online that pilocarpine causes them to literally drown in saliva and they would come off it, but then others say that the prescribed 5mg four times daily is overkill, and instead you need to half or quarter the tablet and take it with food to stop that from happening. 3 drops will be 2.5mg so I will try that out tonight.
        I feel guilty talking about my condition as you have gone through so much more. I have been lucky to keep a job but taking away my spare time from computers was a big shock for me. The likely causes were probably chronic mouthbreathing, extreme dehydration and maybe from the radiation of some of those brain scans I got.
        I will keep in mind the clonazepam perhaps I might try it, although pilocarpine seems very promising. Thanks for the advice :). I will pray for you to keep strong.

      • No worries! Your story may help someone else as I’ve had a few dry eye people comment from NZ, but for MGD/meibomitis. My sicca issues were from autonomic nervous system dysfunction originally (this is from Ehlers-Danlos syndrome), then I got MGD which seems to happen to everyone with dry eye, and then the corneal surgery just did me in. :/ The Evoxac I took came in capsules only (not sure about Salagen), so no way to cut down and as mentioned, they only worked for about 20 mins and I naturally produce zero tears/saliva (owww). We have no eye drop options in the States other than Restasis (cyclosporine), which I don’t think is doing a thing for me and is really expensive, but a bunch of new drops are in clinical trials and the US is the last place to get anything approved.

        I wouldn’t worry about radiation from scans–it’s radiation treatments for cancer that can damage the salivary glands. I haven’t been able to breathe through my nose forever, so I wouldn’t totally blame that either (except while sleeping as I wake up like I’m in the Sahara, haha). If you can stay hydrated daily, then all should be good in that dept. If you test negative for Sjogren’s like I did, then you’re stuck with sicca syndrome and it could just be your autonomic nervous system not sending the signals to your glands to work correctly. I really hope new drugs will come along to help all of us out. It’s hard to deal with whether you just have sicca or multiple diseases going on, but I’m glad you can still work. That’s a huge plus.

        Hang in there down in NZ and feel free to post an update. 🙂

      • goamn says:

        Thank you. Yes I have done the blood and urine checks for Sjogren’s, they came out negative but I believe I may have tampered with the results because I was taking turmeric at the time and I heard that can hide diseases from being diagnosed. I will probably get another one done, but for now the Dr concluded it is Sicca symptoms without Sjogren’s. I probably do have MGD but it just seems like it is so much work “undoing” it … then you still don’t have tears so back to MGD lol. I tried the IPL treatment with a Professor in Auckland University but didn’t see any noticeable improvement, same with Restasis (which I got from Dubai, no way you will find that in NZ!), but again I may have sabotaged those attempts by overdoing the computer/mobile usage at the time of administering them (they were done at different times). I’ve tried 4 applications now of the Pilocarpine eyedrops, 3, 6, 7 and 10 drops respectively diluted with varying levels of water. I can say that I am thoroughly disappointed! No sweat, no saliva drowning, no tears, nothing noticeable anyway. But regardless I will keep using it for the next couple of days. Hopefully the Pilocarpine tablets are available in Dubai so I will try those in a few months time. Thanks for the wishes and I hope the same for you :).Date: Fri, 27 Nov 2015 06:05:04 +0000 To: goamn@hotmail.com

      • I think IPL works best if you have MGD from ocular rosacea, which is my case. It zaps all those blood vessels so makes sense. So, that is under control but still no tears like you. I don’t know who Restasis works for? I’m still using it since my doc thinks it may help a bit and if I stop, it’ll take months to get it to work again. Ugh.

        I wish I could fly to the Emirates for my meds, but I’m too sick to travel and that’s so far from here! Lol. I bet you can find anything you need there, but the climate will make your eyes worse as I live in the US desert, so best to stay in NZ long-term. I’ve heard that NZ is worse than the US for meds and whatnot and I’m not sure why that is. Americans used to get meds from Mexico before the border went to hell and that’s not exactly legal so harder to do these days.

        So sorry you’re not getting any relief from the diluted drops. I hate letdowns like that! I know the pills will help, even if you will be drowning in your saliva. Do they sell an ocular lubricant there at least? I use one called Soothe that is a combo of petrolatum and mineral oil and I go through a tube a week. Yes, you look like you have Vaseline (US name) smeared all over your eyes so you need lots of tissue, but it helps. Anyhow, if nothing else, you may want to try the ointment for when you sleep as it does help.

        Hang in there! 🙂

      • goamn says:

        NZ is behind because it’s a tiny country, only 4.5 million population, it’s also located at the end of the earth :). Yes we have lubricant eyedrops but not a big range. The sodium one just seems to slide out immediately, the systane ultra is far too messy, the systane gel drops are perfect but they don’t come in preservative free vials and I am too sensitive too preservatives. So I end up only using Alcon PolyGel, which does blur things but it’s worth it for a “break” at work. I think I have tried the ointment for sleeping and I remember it was good but can’t remember why I stopped, I will try them again, at the time I was using Lacri-Lube. That Soothe product seems perfect, will definitely try it in the near future! The pilocarpine eyedrops finally produced some results, I had to up it to 20 drops, I will keep experimenting with it until I get the tablets, I think it was working for about 20mins as you said. Why don’t you give me a list of any meds and I can have a shot at getting it prescribed (shouldn’t be too hard), then I will just casually mail them without labels lol.Date: Sat, 28 Nov 2015 10:28:06 +0000 To: goamn@hotmail.com

      • Yes, NZ is at the end of the earth, but at least it’s warm there now. Lol! It just seems the US is the worst due to our FDA. Glad the Salagen (my word) started working! You have to be your own scientist at times.

        I also use the Systane Gel Drops, but only when I have to actually leave and wear my scleral contact lenses to see due to my keratoconus. The preservatives are so not good and the goop-y drops make my vision so much worse as I need to use them every 20 mins or so, but what else to do? It’s very annoying to say the least. The gels tend to bug me and don’t seem to help. I like the Soothe ointment as it’s the only one here w/o lanolin, which makes them even runnier and stink like rubber tires. Lanolin is from sheep wool, so possibly from NZ. Now we went full circle.

        I’ll compile a list of all non-FDA approved meds for your next trip. Haha. Imagine going to jail for that and not having access to drops and ointment while there; oh, that’s too painful to think about. 🙂

      • Hussain A. says:

        Awesome let’s see what we can do, I will be there mid Jan, actually I’m going to try and settle down there (“try” .. this will be attempt two) and I was planning to get a humidifier to counter the dryness of the air-conditioner, I would think that the heat is the only problem and the humidity would help with dry eyes/mouth? I will be getting Xylimelts soon for the dry mouth, have you tried those? The idea is that it sticks to the side of your mouth and slowly releases fluid for 6 hours while you sleep.

      • You know, it’s actually not that dry in the UAE due to the proximity to the Gulf. I looked one time (why not?) and I think in Dubai the average humidity was 50%, which would kill me. That’s due to my myofascial pain from Ehlers-Danlos which goes through the roof when the humidity goes up (sort of like people with arthritis). Yes, there is so much wrong with me! Another thing is that when the sicca issues started (mouth first), I was at a loss/flipping out and went to L.A., which is very humid and my mouth was still awful. That’s when it hit my eyes and I never noticed my eyes being better in L.A. since then, so not convinced the humidity does anything for us. That’s odd.

        I haven’t tired the Xylimelts to my knowledge. I tried a lot of Biotene products before I went on clonazepam if you have that brand, but nothing helped my mouth prior and it’s 95+% normal now. I only had a month at most of the bad sicca in eyes/mouth and now it’s really just my eyes that produce zero tears due to the corneal surgery. I do wonder if the melts will help at night as I sometimes get dried out now between the heater blasting and breathing through my mouth. I’ll have to look for them next time I go to the pharmacy and report back. Are the Salagen drops working a bit still?

      • Hussain A. says:

        Yup I think they are but to really see it I have to do the 20 drops diluted with a small amount of water, I am experimenting now at work (putting some drops in while no one is looking :)). It looks like we have clonazepam (Revitrol seems to be the name) I might try that later on. I guess the question is if I’m going to get worse over time or just stay at a similar situation (I think I have stayed consistent throughout the three years recalling the same scenarios). The xylimelts are quite good, putting two in either side of the mouth (as they recommend) seems to stay the whole night. It releases Xylitol which is sweet and prompts the glands to produce saliva.

        Have you tried the IPL for the dry eyes? Be careful of doing it with beauticians …. there’s many cases where they don’t use the necessary protection (metal eyeball protectors) and people come out with completely fried eyes … a whole set of new problems :|. Yes I think you’re right about the humidity, it doesn’t make it better, although I guess it doesn’t make it worse when you compare to artificial air like A.C.

        I just looked up Myofascial pain and it mentioned inflammation, my brother shared a story about someone who effectively took away a lot of their join pain by taking heavy doses of turmeric (the user “sayyadina” in this forum: http://www.healingwell.com/community/?f=12&m=2234691), 2000 mg of turmeric. Maybe that might help you out?

      • Glad to hear the drops are still working a bit, even if you have to resort to acting strange at work. 🙂

        I looked up clonazepam (brand name way back when was Klonopin) and it seems to be the same name in NZ. It’s a controlled med in most countries (a benzodiazepine), which is why docs aren’t too happy to give it out when they don’t understand how it may help sicca issues. I found one journal article years ago supporting that, but it was in French and I’m not very fluent. I swear this med has saved my life, or my mouth at least.

        My issues haven’t gotten worse, either. Well, aside from the CXL (corneal) surgery that I needed to stop the progression of keratoconus. What happened to me is not a reported side effect, so who knows, but I obviously had some damage to my corneas and that can cause majorly dry eye for reasons I forgot and the clonazepam just stopped helping. It happens with LASIK, too. I had a very well-respected surgeon and CXL is a rather simple thing, so I suspect my slow healing from Ehlers-Danlos was behind that. Sorry to bore you there.

        IPL is very scary in the wrong hands! OMG. My eyes were fine, but I first had it at a dermatologist’s office via his esthetician as it works well for rosacea and the meds are so pricey here. She chronically had the setting too high for my olive undertones and kept burning my cheeks which caused blisters afterwards. During the last session, I heard this huge ZAP like a jolt of electricity and she “IPL’d” a 2nd-degree burn on the bridge of my nose! I have a round, white indent (like a hole!) there now for a scar and would like to burn that woman’s nose in return! I only get IPLs from my ophthalmologist and he does the lowest setting and I don’t even get red. Good advice, though. I’m still so mad about the white spots on my cheeks and that hole in my nose. Argh.

        Btw, I can’t eat any spices anymore due to yet another problem: salicylate sensitivity. This is the worst as I can’t even have olive oil, most veggies, fruits, and so forth and that’s all I used to eat. And no more kabobs (kebobs)!!! Spices are super high in salicylates, so off the list of safe things to eat. However, I used to eat turmeric as I cooked with a lot of spices and no reduction in pain. In my case, the myofascial pain is due to chronic muscle spasm from Ehlers-Danlos and it’s very hard to treat. I don’t test high for inflammation markers, either. I think it helps more with arthritis and whatnot, but thanks for sharing. Oh, I also have a history of acid reflux and turmeric can set that off. What a mess I am. Lol.

      • P.S. I’m not blogging anymore if you noticed (thanks for following me, though!) and just saw that my reply was like a blog post it was so long, lol! Oh, great. :/ The blog just came to a tragic end a couple years ago, but I felt no need to take it off the web with so many people looking for good medical info on my weird issues. I’ll work on “condensing,” which is a perpetual struggle. Ha! 🙂

      • Hussain A. says:

        Oh don’t worry about it, it’s nice to learn about all these things and lots of new things for me to try (and hopefully I can repay the favor lol), as long as you’re not hurting yourself! Take it easy on the eyes.

        Omg that terrible IPLer, these doctor/practitioner malpractices really have to be punished, it’s just terrible how they can get away with all of it. The professor here put it 1 or 2 levels lower than the “safe” one suggested for the particular skin color, just to be even safer. So glad she did that. I saw lots of lights on each zap and only had a small tingle on the last 2 zaps of a session, that was from the beard stubble getting ignited, painless for the most part. Don’t worry about revenge, that’s why we have karma :).

        Wow so much sensitivity and so many things to avoid, turmeric is very high on the salicylate scale. That’s a shame, who knew eating healthy isn’t possible by some diseases :|. At least you can eat all the meats, minus the mainstream ones with all those powders and flavors. I have the acid reflux as well, I have been countering that with baking soda (teaspoon or tablespoon) in my tea, tea seems to take away that flavor. So much to learn and retain with your disease, it seems like it’s enough to be a doctor lol.

      • I say that I have an honorary medical degree at this point, especially as I figured out I had EDS (Ehlers-Danlos syndrome) and then self-referred to a geneticist who confirmed it. That only took 11 years. I think you have to be your own doctor if you have anything “unusual” or something. How lucky are we?

        I don’t notice that my laptop makes my eyes dryer; it’s just really hard to see with my vision and then I have the achy body that doesn’t like chairs. But, everyone says computers are bad for dry eyes. I think we blink less if I’m not mistaken. You mentioned A/C before and oh, is that the worst! I can drive (sort of) with my scleral lenses and in the super hot summer, I have to have the A/C on low and have all the vents pointed down toward the floor, so it’s like riding in an oven. I can’t even think about flying as I have a massive fear of flying and then the vents blow right in your face.

        I’m glad you don’t have scars all over from the IPLs; you had a good doc who actually knew about skin tone. The odd thing is the doc at that clinic I went to claims he specializes in ethnic skin. Did you have a series of them and did your doc express your meibomian glands and all that fun stuff? I just ask as the IPLs for rosacea didn’t help my MGD as my glands weren’t expressed. I wish I could see what comes out…how gross! The IPLs from my eye doc totally got rid of my MGD, but I had 6 sessions in 6 months and now do 2 a year. I can still see the light, but he barely hurts me unlike the torture lady. I hope karma exists but haven’t seen it show up and my list is growing. :/

        Do they have PPIs there for acid reflux (Prilosec, Nexium, etc)? They clear it up really fast, but I really only get that or ulcers from NSAIDs (aspirin, etc.) and alcohol, so just avoid both. I tried baking soda at someone’s recommendation and felt like I swallowed the sea. I can’t imagine it in my tea. Salty tea. Lol. You must have a hidden drawer at work for that and the drops and other concoctions. 🙂

      • goamn says:

        Yup lucky indeed. I normally self refer myself and I haven’t had a regular GP for years. The professor was surprised that I just casually heard about her by asking the Auckland Eye clinic and asked her for any dry eyes treatment. Wow I think my IPL sessions (3 or 4 in total) are exactly like the first one you had because I didn’t get any of the gland expressions done … and it all seems to add up that I probably have MGD and my sicca symptoms were with me for an even longer time than the MGD which hit me 3 years ago.

        Very exciting, now that’s the top thing on my list, IPL with expressions (hopefully by a competent dr!). The professor did it all very well however she only get the machine recently for her research so she wouldn’t have known about the expression and all of it. She noticed positive results from 80% of her patients, I will be sure to tell her about the expression. She also did some eyelid “cleaning” which was using some kind of razor/blade to cut off “extra skin”, or something like that, on edges of the eyelid, she warned me that there would be a lot of pain involved but I only got a little bit of sensation.

        She did around 5 tests beforehand, really specialised tests, one of them was the green eye/hulk eyedrop and then looking into my eye. As the did it, I asked her, why am I not in pain? Referring to the other eye doctors that did the same thing with the addition of pain, she said that the drop is supposed to be diluted and clearly those doctors didn’t dilute it as they just used the eyedrop bottle directly! Another test was the scan of the eyelid where you can see which glands work on either eye and upper/lower. Only my lower left eyelid had 80% that weren’t active while the other places were active … or “coloured in” anyway. I’m very inclined to think that MGD has a big part and as they say it’s just old “stuck” oils in the glands blocking the pathways. Thank you for sharing that, very exciting!

        I can relate to being in an oven, I was in Iraq this year and as we landed it was 57 degrees celsius (134.6 Fahrenheit) the first day! Then slowly came down but the average the entire time was 48 degrees. Terrible place to be for dry eyes, then again, terrible place in general haha.

        Yup salty tea isn’t that great but at least it’s conveniently cleaning my teeth as a plus :/. Yes we have Gaviscon but I’m very “sodium” concious as I eat mostly packaged foods. And since baking soda has considerably less sodium than Gaviscon then I opt for it instead. Yup I put the stash in my bag which is very useful for carrying extra clothes. In NZ you get 4 seasons in one day, and multiple times on that same day too. One moment you need 4 layers of clothe otherwise you get hypothermia, and next second it’s so hot that you wish you weren’t wearing leg warmers lol.

      • Leg warmers! Lol. I’ve met lots of Aussies but only one couple I can think of who were visiting from NZ and never knew about the weather changing so often. They say the same about a city in the US called Denver due to the high altitude. That would drive me crazy and carrying bags hurts my shoulders as is. Lol.

        I had to Google Gaviscon, even though it sounds familiar. That’s an antacid like Mylanta I think, so not the same as a PPI which may be prescription-only there. The latter shuts off the acid-producing pumps in the stomach, so a better route short-term. But, after I took it for awhile for gastric ulcers per my GI doc, it started drying my mouth out! So, maybe be cautious with those.

        I won’t ask why you were in Iraq, but my blog might be on a watch-list now. Whoops. Did you have issues getting back into NZ? I can only imagine some interrogation room at the airport. Yeah, it doesn’t get that hot here, but in the 40s C for sure in the summer. It feels good on my achy body until the monsoon roles in and then it’s like India. There’s just no perfect place, is there?

        I’m so lost on what the professor in Auckland did! I never had any tests done either (sort of jealous). What they’re supposed to do is do the IPL and then they take 2 Q-tips and slowly squeeze your bottom lid between them from the inner corner to outer corner as each gland is like a tube lining your lid (Google it for fun photos). Then, they do the upper lid and repeat on the other eye. This hurts a lot the 1st couple of sessions and I had black eyes from the whole process, but bruise very easily due to EDS. It is thick oil that comes out, but with more treatments, it starts to get more liquid-y which is why it hurts less. I use the olive-oil analogy: it’s good at room temperature, but if you put it in the fridge, it congeals and won’t pour out. That’s what is happening when we have MGD. Do you have watery eyes for no reason? I had that so badly in the winter, but post-surgery I don’t even have the watery eyes that I almost miss. Anyway, all that is due to the lipid (oil) layer of the tears being absent due to the clogged glands so the tears are too watery and then evaporate too fast. Do you think that doctor was really expressing your glands vs. doing something crazy with a razor? I have no idea what else she’d be doing as they have to be cleaned out, period. I’m also trying to figure out the hulk drops (Incredible Hulk?), lol. Are they like neon yellow-green? If so, those are usually numbing drops and I think they do sting at 1st, but I can’t recall even though I’ve had them a zillion times. Hmmm. Oh, the other thing is my doc has me use steroid drops for a few days after each IPL and then I use an NSAID drop for inflammation for a month after that. I also use an antibiotic drop called Azasite on my lids only every other month to keep all the bacteria at bay w/o building up a resistance. I’ve read online that that’s standard protocol with IPL treatments for MGD. Does anyone else do IPL there for MGD? I had a few people in NZ who left comments a few years ago who couldn’t find it and were trying to get to AU, but maybe it’s better now. I don’t think it’s that easy to get in the US, either.

        And finally, my MGD started after the sicca syndrome showed up one day, as well. I think everyone with dry eye gets it, or at least it seems like they do. I wonder how you got sicca syndrome without an underlying disorder? Do you have other problems with your autonomic nervous system? It’s odd that most docs know about sicca syndrome, but have no idea what to do about it, as if that’s okay. :/ I find most GPs to be totally useless, as well.

      • Hussain A. says:

        Oh sorry confused you there about the professor. So she didn’t do the expression at all (I read about it sometime ago and didn’t really register it all). Instead she did some other thing involving a blade and removing “excess skin” growing on the edges of the eyelid. That’s why I figured I would get some really good benefits from IPL plus the expression. I saw some videos with the Q-Tips and it looks hard, actually I think I need the instrument from this video (don’t click it if you don’t feel like getting grossed out! ) : https://www.youtube.com/watch?v=Lapguls0Yhk . Ouch black eyes, I guess it’s worth it if it brings back those lipids. Definitely for me, no lipids and only watery tears, they disappear in seconds … despite having the left eye fully plugged up with two punctual plugs and a third in the right eye. There’s still no “official” IPL in NZ, I accidentally stumbled upon it with the professor who is doing research with it. That may have changed but I doubt it.

        Can’t you find other places to do tests for your eyes? Sometimes calling the same place more than once gives different results … that’s how I was referred to the professor. I think the hulk one is this one (although they are saying orange instead of green, and also there’s no blotting paper) : https://www.nlm.nih.gov/medlineplus/ency/article/003845.htm . I thought the test of visually seeing activity within each gland inside all the eyelids was the most important, none of the eye doctors can do that. As they view it, dry eyes is “not that bad” and there’s bigger problems they have to worry about :/.

        Nope the trip back from Iraq was all good. It’s just the usual one for marriage (attempts) that most western Arabs perform in their country of birth. Unsuccessful for me to say the least :|.

        Oh right you can withstand those hot temperatures, a lot of people wouldn’t be able to though. In NZ if it hits 26-30 degrees then everyone goes crazy … meanwhile I take off one jacket :).

        Yes it makes sense that the dry eyes would cause the MGD in most cases. For me I was using the computer too much (as usual) but with the difference of having just started my career in an A.C. environment. I hear other stories as well of being in an AC filled environment for long periods of time. It never wouldv’e happened in university because lectures/labs are all over the place. I must’ve got it within the first year of work and now actually it’s been 4 years of dry eyes (I wonder where I got the 3 years from previously).

        That’s the thing with discovering Sicca’s symptoms/Sjogren’s, no one mentioned it in NZ, ever. I was told in Dubai to do rheumatology tests and so I did research and referred myself to a Dr here in NZ. But as you said, even if they did they wouldn’t know what to do about it! My Dr only mentioned pilocarpine and “it’s probably not available in NZ”, so I ‘encouraged’ him to do the pilocarpine eyedrops with some links (and occasional sob stories :)). So strange how the US which is the most “advanced” country in most people’s opinion is actually quite backwards with medicine.
        So the FDA controls what is allowed to be prescribed or not (as I take it).
        But I was wondering if they would be ok with prescriptions being made by doctors for medicines that are not FDA approved, and then using those prescriptions in other countries? And/or bringing it back to the US? I was advised to keep prescriptions for any medicines not available in NZ if I comeback so that they won’t take away the medicine.

      • OK, I almost lost it watching that video, but simultaneously couldn’t keep my eyes away. Haha. How sick am I? Yes, that’s exactly what is done but with Q-tips. I bruise very easily (have a little black eye right now) and I was taking fish oil capsules for the MGD back then, which no one told me work as blood thinners. So, I still think this is the only way IPL can work if you can find anyone who will do it that way. I’m still lost on what she was cutting unless you have something else going on? That sounds way worse, IMO. Also, you may want to consider the fish oil capsules as all the dry eye docs swear by it in the US. It’s the omega fatty acids in fish that help the lipid layer if anything is coming out. If gelatin is an issue, you may be able to find a pricey brand that uses cellulose, or maybe you can buy vegan capsules (empty) and pour fish oil in. They sell it at health food stores here, or just go fishing since you’re in NZ and squeeeeeeeze. Haha. 🙂

        Per the drops in the article, I had an ER doc look at my cornea that way (drops with the blue light) after a drop of acid got in my eye, but all was okay. I’ve seen my optometrist use flourescein and it’s the neon yellow-green color and looks just like the drops that are for numbing as they get all over–I just Googled it. Hmmm. All the same? The thing is that any eye doc can spot MGD by looking at the glands with some type of magnification. I suppose it’s like having clogged pores on your face per that video (ewww), which most people can see. I’m wondering if all the tests are necessary or if that was for research purposes, like you had 20 clogged glands pre-IPL and 5 post-IPL and she needed that for the study. My doc is the only one at my clinic who does the IPLs and he manages my overall, abysmal eye health so no other tests (honest). I hope you can find someone who does IPL that way.

        Btw, the US is backwards in lots of ways and while I’m fortunate that my family could come here over a hundred years ago, I’m not so sure about the appeal now unless you’re a Syrian refugee (etc.) and then no one wants you due to the backwardness. :/ So, about our FDA…”big Pharma” pays to research new drugs and that can occur anywhere in the world. In order to get FDA-approval and make big bucks via our annoying insurance system that is not nationalized, they need to spend a fortune on clinical trials here in the States, and that’s for everything medical, not just medications. It’s a really long process, but then that company will have a patent on X medication for so many years here. It’s usually illegal to import non-FDA approved drugs, but there could be some exceptions although I’m too tired to research that. :/ Of course, you can access new meds via a clinical trial, but your supply is cut off when the trial is done. If you go abroad and bring back an FDA-approved medication, I do know that you need a prescription from the doctor in that country, even though so many countries don’t require one. I wouldn’t even dream about it with all the security now, but I did bring back non-FDA approved meds from Mexico lots of times (just throw them in the suitcase) as no one cared about a small quantity of meds for a ravaged GI tract due to the water there. But, rules are rules and the FDA is a big pain as they’re so slow and won’t approve a lot of drugs that you can get in Canada or the EU, etc. I hope that answered your questions. 🙂

        Oh, I did have blood work for Sjogren’s done by my former GP actually, but was later told by a rheum that only a lip biopsy, which is apparently very painful, can totally rule it out. I passed on it as Sjogren’s doesn’t seem to fit as my salivary glands were never sore/swollen and then the great results from the clonazepam, which wouldn’t make sense if my glands were actually abnormal. Anyhow, food for thought to get a complete diagnosis. Also, if there are any autoimmune disorders in your family, it makes you more susceptible to getting one. In my case, EDS can explain it all away, but I was worried at first as I had a grandfather with rheumatoid arthritis and they tend to get Sjogren’s more than other people.

        Glad to hear NZ welcomed you back from Iraq and you came back with your head attached, even if still single. I haven’t met an Iraqi in a long time here. Maybe you’ll meet someone in Dubai, but I think you need to be super-rich to compete. That’s the reputation they have over here (sorry people from Dubai who read my blog). The furthest east I’ve been is the Maghreb and it was nice and hot in the summer in the desert, but cooler than here so I was the only one not about to pass out. Well, I’m also not Muslim so western clothing helped a lot. 🙂 I don’t think I ever blogged about that trip, but I was sitting in the waiting room of a hair salon there and I picked up a magazine that was from the UAE (it said that in English somewhere) to look at the photos and I knew to open it right-to-left since I studied Hebrew long ago and I must have really looked the part as these women started talking to me in Maghrebi Arabic and I only knew a few words and panicked. All I could say was “Anglais” in French. They actually spoke some English and were so surprised that an American was inside that salon. Funny! You learn odd things when you travel, like how biased the Arabic-speaking media is even if you can only understand the images (that’s brought in via satellite from the Arabian peninsula) and it took me days to figure out why every program showed the time and then GMT, KSA, UAE. Oh yes, those are time zones more or less! But what were they saying??? Nothing good about me; that’s for sure. :/ Well, I hope I didn’t offend you fellow sicca sufferer; I just call it like I see it and don’t understand how people can hate other people solely based on their religion or ethnicity or anything else. (I wrote a post again.)

      • Hussain A. says:

        Yup I’ve been taking the omega 3 capsules but I come on and off of them so will try and keep it constant especially once I find an IPLer (that is not a beautician!). Thank you I hope I find one too, IPL is definitely on the top of my things to do list :).

        I can’t seem to find any google results for the removal of excess skin but it wasn’t critical. It took about a couple of minutes to do all the eyelid margins. Even though it wasn’t critical it was good to get it done as she said “normal” eyes don’t have that and it grows from the mgd (or something like that, I should probably ask more about it).

        Oh right that makes sense about FDA as it’s quite commonly mentioned that the healthcare is like that, slow and expensive.

        Yup more diagnosis is always good, I should check for other things besides Sjogren’s. I don’t really know a whole lot about inherited diseases within the family, except of course the weak back from my dad lol.

        Don’t worry no offense taken! Yes showing off over in those countries is quite abominable, definitely not into that. People get dozens of loans equating to 100s of thousands of dollars to “fit in” with silly un-affordable cars, gadgets, bags, and clothes … very expensive clothing -_- … And yes I get definitely relate to the bias you would pick up especially as a westerner. But the bigger problem is probably the deep-rooted hypocrisy in eastern countries.
        As I see it all countries and ethnicities have their pros and cons. For example, generally easterners can be much more hospitable and charitable (keyword ‘can’) whereas westerners are usually to the point and can be much more cold and distant (same keyword :)). I always step back and see the good and the bad, and usually it’s all there but just displayed in different forms. Not to lighten any evils that I see though! But more of trying to get a better judgment.

        Am I still a comment or a post now? :O Haha. Oh when you get your list ready, maybe you should email it to me instead to not make it public :).

      • This is weird, but you ended up in my spam folder after all this time. Good thing I check it as that happens once in awhile. Per email, I don’t have a “public email” which is why I’m forcing you to comment over and over on my blog (sorry). When I was blogging still, I created a gmail account and tried to forward it to my regular email account and while it looked like it was working, it wasn’t and people would ask why I hadn’t responded to them. Responded to what? It’s like their emails got lost in cyberspace. Anyway, I’m moving (again) next week and have a new email option I think, but will need time to figure it out after the huge move. I will make an effort to do that, though. Also, I will be soooo busy and won’t have internet access for awhile, so just letting you know I’m not ignoring you in advance. 🙂

        I’ll try to remember to ask my eye doc about your “mini-surgery” and what that does, although I think I’d lose it if someone came near my eyes with a scalpel. My corneal surgery for keratoconus involved a bit of laser, but no cutting. Phew. I see my eye doc next month for an IPL so we’ll see if he has time to chat.

        Btw, I was never sold on omegas, but I swear my eyes were worse when I had to stop them. This was pre-surgery and before all my tears dried up. I also took a double dose so that may have helped. Or, maybe I imagined the whole thing!

        I would look into your dad’s bad back. Sounds like me, but then add “bad” to everything. :/

        I hear you about there being good and bad in every person and all around the world. Funny about all the loans; I figured it was just oil money. Yeah, Versace will never go out of business. In the US, I swear that how people act, dress, think, etc. depends on the part of the country, with the area I was raised in having nicer, more casual, socially-aware and eco-friendly people overall while the people in my current area are largely awful, uneducated, could care less about anything but themselves, and get loans for big SUVs (aka gas guzzlers) and max out their credit cards on humongous TVs. Haha. I’m a bit more of a judgmental-type of person than you!

        I’m so tired tonight I think I’ll leave this as a mini-post. I don’t think you’ve crossed over to a post yet. 🙂 You should start a sicca syndrome blog! I get more hits on the ONE post I wrote on just dry eyes and MGD. Who knew?

      • goamn says:

        Yea last time I tried it was definitely tricky to get the email forwarding setup correctly. So far I don’t think I’m missing out on mails … although sometimes I do get duplicates.

        I’ve got so many little projects I want to do and making a post about dry eyes/mouth would be one of them, it would be great to put everything I’ve learnt in together for the unsuspecting newbie :).

        Ok good luck with the move, keep me updated! I’m also having my usual Sydney stopover at my dad’s, booked in with “the eye practise” for a checkup, they look extremely knowledgeable in the dry eyes field. Giving up hope in IPL and then gaining hope again, always a roller-coaster ride with dry eyes lol.

      • I’m so sorry to get back to you so late! I’m still moving and while I’m officially online, I have no time to do get online. I just got on to try and clear my inbox with a zillion emails. :/ I think I’ll be almost back to normal by Jan and I’m not kidding (sort of a long story).

        I’m glad to hear your father is in Sydney so you have a place to stay and better access to medical care. Yippee. I do think you should start a blog, even if it’s simple. It takes a lot of time, but if you have the back info, then why not stick it somewhere? It may even organize it for you. Lol.

        I don’t think I have the email option I thought I did, not that I’ve been online for more than a few minutes. If you don’t hear from me for weeks again, you know why. Ugh.

      • goamn says:

        I went to the clinic and got some really good diagnosis. It’s not a surprise but it’s nice to know that the main problem is the lipid layer (even though there can be a hundred causes). The machine that measured it had me between 20-29, and the normal amount is at least 80.

        So I got a routine plan to put in place, which is the blinking exercise (using eyelid muscles and not facial muscles, which tends to not happen during computer world and instead it’s just a quick blink) every hour. Warm compress with a Bruder pack (instead of the less effective face towel) every day. And some new powerful drops which actually do something in a1 month period unlike the Restasis which needs at least 2-3 months to kick in… Why don’t all doctors know about this :l. And a tentative LipiFlow appointment which I will probably go ahead with despite costliness, which is better than IPL because it goes behind the eyelid, but that’s probably debatable.

        Anyways I asked about keratoconus (spelling?) and he specialises in it, he says you need a good doctor to manage it and he has colleagues in the U.S. So if you want to see his recommendations just let me know your area and I’ll ask him 😊.

      • Great news about the eye clinic. I have to see local eye docs for my keratoconus due to how insurance works, but I had my cross-linking surgery in L.A. ($$$) via a HUGE keratoconus doc there. Due to all my trash talking, I have to keep all my docs anonymous so no one sues me (life in the US). Whoops. :/

  15. ShimonZ says:

    It’s been a while, and I was thinking of you. Wishing you a better year ahead.

    • Good to hear from you, Shimon! Things are getting a little better after a very long downhill slide. I have had quite a few comments on my blog this winter which brought me back over to WP to reply, but I haven’t visited any old friends here so I’m apparently not a very good citizen of WP Land anymore. :/ I had to take a step away from my laptop way back when (the endless hours of reading and typing) and things have been somewhat better between my vision and difficulty with sitting, etc. Anyway, I hope both New Years have brought good luck and I promise to “drop by” if I ever rejoin the online world for purposes beyond clearing out the ol’ inbox. I do think of you, as well. I recently moved to a real abode and have a mezuzah on my door frame again and could have used your help nailing that into the wood. 🙂

      Good Shabbas. You must be offline tonight/today, yet here I am online with my candles burning…

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