About

“We draw our strength from the very despair in which we have been forced to live. We shall endure.”

César Chávez

 

Back in the day, people called me Lil Lis.  I was born in the mid ’70s in Seattle, Washington and was raised in a bizarre and dysfunctional family, primarily by my father.  As the firstborn in a family dominated by males, my father raised me as such and I am often told that I think like a man.  I was brought up to be outspoken, tough, and career-oriented.  For all of his transgressions, I will always be grateful to my father for making me the fiercely-strong female I am.  I was dealt a difficult hand as a child and perseverance and survival are all I have ever known.

I always knew I would accomplish great things in life and I realized many of my dreams by my early 20s.  However, when I was 27 and busy climbing the career ladder and attending graduate school full-time, I developed severe fibromyalgia* (see update) and my life was turned upside-down.  I quickly lost my ability to work, my financial independence, my social life, and I eventually ended up on disability and living in the desert, where my pain is somewhat better.  My life went from being an ambitious workaholic to being an unproductive person in chronic pain, who divided my time between doctor appointments, picking up prescriptions, and watching TV all day.  I was dealt an extraordinarily bad hand and simply folded.

Someone kept urging me to write a blog, but the computer makes my body hurt more and I did not know where to start or what to write about.  Furthermore, I am a scholarly writer due to my educational background (and a horrible perfectionist) and creative writing is just not my specialty. Then, in 2011, my vision suddenly began to fail.  The journey with my eyes, and the final diagnosis of the corneal disease keratoconus, ultimately gave me something to write about—now that I can hardly see the computer.  Yet another bad hand was dealt to me, but who’s counting?

Many thanks to my brother for creating this blog—and putting up with my neurotic personality in the process—and for writing from afar when my eyes wouldn’t allow me.  I love you with all my heart.  I hope what I write will be useful to someone else who was dealt a bad hand in this game of life.

Time to play my hand…

 

*Update: I was diagnosed with Ehlers-Danlos syndrome (EDS) by a geneticist in November, 2012.  It is an inherited connective tissue disorder that is sometimes misdiagnosed as fibromyalgia and can cause keratoconus.  I have written about this on my blog.

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48 thoughts on “About

  1. […] tried blogging before, and we didn’t expect to be 1k strong so soon. We would love to thank A, from playingthehandiwasdealt for her numerous comments, and  Keratoconus GB Living with KC for re-blogging our work. Also a […]

    • Thanks for the shout-out, A & A! I love blowing up your blog with comments. Ha ha. Appreciate yours, as well. Congrats on your success so soon… Have you really only been on WP since February? Seems like I’ve been hanging out at your “house” forever. 🙂
      A

  2. terry1954 says:

    your eyes are in your heart which give you a clearer view of what you are looking at my friend……………..you have been through struggles, but this has made you a warrior who is fighting with all you have learned………………………

  3. I am a survivor in every sense of the word. This is all I’ve known and this too shall pass. What a beautiful comment about my eyes–a real silver lining there. You have such a way with words, Terry. I’m a writer who just calls a spade a spade and tells it like it is, but you create beauty. It’s the way I am and the way I think, but I bet you could find the beauty in my dangerous, ugly neighborhood that I just make fun of!
    A

  4. I don’t know if you participate in the blogging nominations and awards, but regardless I wanted to include you as one of my nominations for the “WordPress Family Award”.

    http://connectivetissuedisorders.wordpress.com/2013/05/10/wordpress-family-award/

    Thanks for the support and cyber-friendship!! 🙂

  5. Thanks, Katie!

    That’s so nice of you. Unfortunately, this is my 3rd award nomination I’ve had to turn down as I don’t have the required number of blogger friends to pass it onto. I doubt I will ever have a big group on here, but if I do, I’ll grab the award and run with it (the best I can run).

    Thanks for your support and friendship, too! It’s good to have a researcher on here as there’s little research on EDS and after devoting my life to researching my misdiagnosis for 12 yrs, I sort of lost interest. Sigh…

    Talk soon and hugs,
    A 🙂

  6. I miss you A. You OK?

    • Thanks, Sheep. I probably missed a post of yours again! Well, I always answer, “I’m OK,” even if I’m not. My body hurts so much and it’s hot and dry (my better time), which is worrying me and I’ve just been deserted by my corneal doctor and am so lost without being able to see. Beyond frustrated! I don’t have the energy or brain to write at the moment. I kept trying to think of something last night and nothing came to me again. So, maybe just 2 posts this month.

      Being sick/in pain gets so tiring. I just want to be able to watch TV all day like I did for years after I got tired of failing–but I hardly have any channels at this place. You get to a point where you can’t or don’t want to think and I have no one to help me out, so it just got to be too much with the blogging I think. I was pushing myself per usual–very typical pattern where I give it 200% and fall on my face. I could have done 100 things in 1 day before I got sick. Maybe some doctor appointment (never a shortage of those) next week will give me something to write about, but it takes me nearly a week to put together a post–yet another problem. Sigh…

      Thanks for checking on me.
      A ❤

      • So sorry A. Life can be so hard – I wish there was a way for me to make things easier for you. I know this week is a terrible one for Gen and I can’t imagine having to live like that. So I hear you and I’m on the other side looking in which is also pretty bad because I can’t do anything – oh how I wish I could.

        So hang in there and do take it easy. I read an interesting post today on the Green Study: Hairshirts… check it out if you have a chance unless your eyes won”t let you…

        Hope you feel better soon
        xo

      • Thanks for your thoughts, as always. One day at a time…
        A xo

      • Yes, you are right. One day at a time.

      • Lol! I can’t even think about tomorrow and I was always so pro-active before I got sick. I should just start drinking so I can go to AA–that’s their mantra: one day at a time.
        🙂

      • Yes, but then you couldn’t go to the meetings – you’d be feeling like crap!

      • It could be a cure–my EDS grandpa was a big drinker! I think it helped that and his RA. Could be why my mother is so asymptomatic. Lol. However, I have a history of massive stomach ulceration from my father’s side and drinking brings on the GERD, so I’ll have to pass. Dammit! 🙂

      • My father was also a drinker and maybe it made him feel better. I know now why he couldn’t wait to lie on his back. Poor man – he kept telling everyone he was feeling like crap yet no one listened… he died of a slow and painful death (over the course of 5 years). He had all sorts of issues that were thought to be in his head and diabetes slowly chewed everything up…

      • I suspect so. My grandfather had the slow death after his stroke (further complications due to PAD from smoking and osteoporosis), which led to a fall that ended it–not sure if that was from drinking or EDS (the osteo.). Not to scare you due to your mother. He did everything one can to get sick in old age. He did get a 2nd-hand waterbed later in life and that was the 1st time he commented about his pain (or how great he felt). I wish he had been more of a kvetcher so I would know if his pain was like mine, but he also had the RA, so who knows? Well, I sleep on an air mattress and believe it has the same effect, although a warm waterbed sure sounds nice. Don’t think I could move one in here if I could even find one! Lol. So ’70s.

      • Just wanted to say thanks for bringing me back (for now anyway!). I wrote a post in 1 night! It’s a miracle. I think the ongoing issues with my family are beyond control right now, and that was exactly what I needed to write about.

        Merci beaucoup,
        A x

      • oh!!!! Great… going to read it now!

        Avec plaisir!

  7. And by the way, what wrong with your schedule? Aren’t you normally sleeping at this time?

    • Sometimes. I’ve been good lately (as in going to bed by 7:30 am instead of 12 pm), but my post went a little crazy and I can’t get off the laptop. See why blogging is bad for my health. I feel too sick during the late afternoon when I get up to use the computer and it’s too bright to see the screen well. Still working on it!

      • My daughter has an awful time with her schedule. I was reading it may also have to do with cortisol (in her case anyway) as I know it’s off.

      • Check out that vimeo video I posted on your blog. I’ve come across this several times on the net. The sympathetic nervous system is very active at night and not during the day, hence causing a circadian rhythm disorder. I get more awake the later it gets, even though it’s morning. Another ANS issue and I have some others. They can sort of treat it with beta blockers as they calm that system down and haven’t noticed a BP drop in EDSers (weird), so I got all excited, until I found they also lower norepinephrine, which is what I need to lower my pain (reason I take a TCA). Who here would know how to prescribe beta blockers for EDS, anyway. So, vampire for life. Hate it!

      • Wow.. will do. So many things to learn from and so complex! Crazy and scary at the same time. Normally, I’m rather smart but now I find it’s like all entwined and i can’t seem to find the right end to sort it all out. :S

      • I’m the same because unlike my misdiagnosis, there is hardly any published research. Those videos are of EDS conferences featuring the few docs on the East Coast who deal with EDS, so I’m pulling info off there that is based on clinical observation. I wish they would publish more or any funds would come through for real research. Not holding out hope a cure is coming in my lifetime! Then it’s back to Depression Land. Lol. 🙂

  8. ShimonZ says:

    The look of your eye on your icon reminds me of a woman I once loved very much. I’ve been reading in your blog… I liked the picture of you and your cat too. But I found I couldn’t comment on the posts… couldn’t send a like either. I felt I didn’t know you well enough, and the things I read were not the sort of things I could comment on easily. Yet all the same, there was something about what you had to say that touched me. So I did want to let you know I had visited… and finally chose this page to leave a few words. A good shabbes to you too… even if you light just one candle, may it bring a lot of light into your life. My heartfelt wishes for a speedy and full recovery from all your medical problems. Sometimes there are unexpected gifts in this world, just as there are unexpected falls and disasters.

    • Thank you so much for your comment and wise words. I’ve been thinking about your post and blog throughout the day. My posts are rather strange, even the ones about my genetic disease and subsequent corneal disease from it. I understand not wanting to comment–no worries. Oh, I hope the other photos of my cat weren’t offensive! I use my blog to raise awareness and help others with my rare diseases and am doing that with my cat’s rare cancer now. She really isn’t sick now and she did very well with surgery and I wouldn’t post photos of her if she were feeling sick, either. But, I feel that illness is part of the cycle of life, even if it isn’t clearly spelled out. Most of us are not spared of it. Plus, I’m a novice with low vision–I have no idea how I got the photo of the two of us and it’s the only photo of my face (or part of it) on my blog–I felt compelled to post it as she means so much to me.

      Ah, my eye. My eyes run through my father’s paternal side and I consider them Semitic eyes. In the US, I can often recognize our people through the eyes. I’m glad it brought back old memories for you. I will be back on your blog so I hope the eye doesn’t drive you crazy! Well, off to light my one candle soon. Like many Americans, I was raised Reform and tend to wander from it when nothing makes sense in life, but culturally I know who I am and I see thousands of years of history staring back at me in the mirror, even if my vision is deplorable now.

      Glad to have met an Israeli friend on here. I hope I am well enough to go to Israel one day (maybe for good, although I don’t remember much Hebrew now). Stay well…

      • ShimonZ says:

        As you probably realize by now, I say what I think, and don’t try to be politically correct. I love your eye, and was happy to find a picture that included yourself, especially with your beloved cat. I am happy to meet you, and look forward to getting to know you better. Shimon

      • Shimon,
        You’ve met your match! I’ve been told I have no filter when I speak, which isn’t exactly a compliment, but so be it. I just figure I should keep my political thoughts to myself on your blog unless you specifically post on them. I’m so happy to meet you, as well, and thank you for your kind words, even if my eyes are diseased now. I’ve met a few Israeli bloggers on here, but nothing was of much interest to be honest, so I was glad to find you in the reader that night. I actually have a lot of Israelis that visit from the search engines as my corneal disease is more common in Israel (and S. Asia and Finland!), but they never leave a comment. Over here, we get rather excited to find a lantzman as we are such a minority as you know. Thanks for the follow, btw. I just do best bookmarking the handful of blogs I enjoy due to my vision. I think I have the time to head over to your spot tonight to learn more about you. Oh, I should warn you that some of my posts may not be for you. I have a dry sense of humor and while I keep my language clean, I live a strange life and strange things come out…
        A

      • ShimonZ says:

        You’re right, A. I have already found some blogs that were not for me… and at least one, that I might have commented on privately. But didn’t want to post my comment publicly. Are there some posts that you would recommend to me? Posts that would help me to get to know you as a person?

      • Hello Shimon,
        Hmmm. My blog is so health-focused that I just think it isn’t of interest to people who don’t deal with all that those of us with debilitating, chronic illnesses go through: horrible doctors who dismiss us, diagnosis after diagnosis, loss of work, feeling SICK and so on. My blogging friends on my site have my diseases or a relative with one, which would make sense, but all are welcome. I get worried that I may come across as rude, especially as you are a religious man, which I admire very much, but when I have to navigate the US healthcare mess all alone, it gets very frustrating. I went 12 yrs with a misdiagnosis due to the sub par doctors here in the American desert.

        I have a very small category on my father that may be for you (3 posts). We are estranged and my family is very dysfunctional in general, but my father holds a special place in my heart as he raised me when my mother never did and I look very similar to him, but with a lighter complexion. He lost interest when I was around 10 and then I was on my own a lot, but my memories are long and go back to the age of 3 or so and he made me who I am in so many ways. I am very tough as a result. Sometimes, I have a laugh at his expense: My Father’s Daughter. He is a man with many weaknesses and faults and his children paid the price, but my favorite posts are on my father (aside from the super-long one about my cat and me!). One post may be unfamiliar as it deals with the war in Vietnam in a roundabout way, but it’s one of my favorite posts: An Ailment Can Have A Silver Lining. The other is about the necklace I wear: The Broken Chain, but I hate that image I chose and couldn’t find anything else. You will know me a little from how I write about my father, and I sent the one about Vietnam to him in a Word.doc, as I don’t want him reading my blog. 🙂 We were talking then and he said he would put it with the rest of his memories as he loved it. Long reply as usual.
        A

  9. Athena says:

    Hi there,

    Oh I so understand your frustrations with sclera lenses. I just finally got a pair that fit perfectly now. But I do have to agree the process is super duper frustrating and at times painful. I was lucky enough to have an optometrist that was continually patient and tried to figure out what the hell was going on. I’ve never had as many issues as you do with wearing contacts, but sclera fitting in my opinion and experience is a long not yet fully perfected process. I do have to say though once that perfect fit is achieved it is definitely worth it, at least for the past hr that I’ve worn them so far. Here’s the pitfalls I ran into, either the vision was good, but the fit was horrible, thus it made everything look hazy OR the fit felt good but the vision was crap, making vision blurry and unclear. If you can figure out which you have had with each eye, the troubleshooting for the optometrist becomes easier and the final product will yield better results. Shoot me an email if you’d like. I hated the process almost just as much as you did. Hope things can be resolved!

    • Hi Athena,

      Thanks for your comment, but I’m not sure which post on scleral lenses you read as you commented on my About page? I actually have had zero issues with fit (really!) and only 1 correction was made to the prescription as my doc is very good, which I mentioned in my last post. My case is very complicated as I have corneal scars from CXL (due to my connective tissue disorder) and convergence insufficiency, on top of keratoconus, so I would never be 20/20 with the lenses. My issue is that I really can’t wear my lenses because I have severe dry eyes due to numerous disorders, as well as post-CXL dryness that won’t budge, which I mentioned in my last post too. So, despite having (in my opinion) the best lens fitter on the planet, I’m contact lens intolerant due to the severe dryness and not a thing can be done about it! Sigh…

      Glad you have a pair that works and that you can wear them! Oh, that would be my dream…

      Take care and thanks for visiting,
      A

  10. Hi A!
    I have no idea if you participate in these blog awards but either way I wanted to nominate you for both the “Rose of Kindness” and “Unique Leaves” awards. Thank you so much for being so supportive and awesome! I’m so glad we got connected on here!
    http://connectivetissuedisorders.wordpress.com/2013/10/01/the-rose-of-kindness-and-unique-leaves-awards/

  11. cissyblue says:

    Miss A – clearly you have a million friends, and I am just another faceless internet person, but I want to get a hold of you and at least let you know, that I need you honey. I think we could possible really compliment each other a lot. I know you may have reasons to stay where you are, we all do, but I am serious. If you can find a way to get down to Central Texas you will have a home here with me until I die and after, if you wish it. I can’t think of anyone more precious in this world I would rather share with. I hope you see this, and at least can feel my heart on my sleeve. I have a new young man helping, he is 6’4″ and strong 23 yrs., and a soul of pure gold. Pure gold. He is going to make this a true aquaponics organic growing concern. I need you here for me, just for me. I would love to give you a stable environment, a quiet environment where you could write, listen to music, do whatever you want. There are 4 acres, and I will accomodate you in any fashion you desire. If you want to build a house, done. If you can share with me in between time, we could do it. And I would make sure should something happen to me, that you would never be harmed in any way by it. I sure hope you see this, and at least give it a couple of minutes consideration. I love you A. That’s all I really know– A. That your are Jewish, and that you have medical issues that most people couldn’t even begin to cope with, yet you do that plus you continue to blog and try to explain things and help others. A – please don’t abandon me as a friend. even if you can’t imagine living in Tejas, or with someone such as myself, just don’t disappear forever. I really need to know you’re okay. I want to be your friend and I will be very very very sad if you just disappeared. I know we are far apart now, but that could totally change. My door is open and the opportunity is there and I am very open to ideas and flexible as well, trying to build a place that will feed us, where we can be free of violence, cruelty and hardship. You are always welcome my sister. Always, whether in this lifetime or the next. I love you A, please don’t forget about me. Cissy ❤

    • I wont forget about you, Cissy! I just can’t deal with WP and the 90/10 relationships and my body and eyes can’t take it, either. I really need a big break from the laptop and even my cell with no reception makes my elbow hurt for hours. And no, not a million friends by any means. Lol! As mentioned, I really need to stay where I am for several reasons and just keep trying to make this place work, but you are such a dear for offering me a spot on your land! Wow, I feel honored. I’m really glad you have someone to help you out there, too. My biggest issue is the need to be in a city with excellent medical care that’s very close by due to my driving issues and then the need for an arid climate, so it’s a challenge. I just keep thinking maybe this city will eventually get with the program and draw good doctors here. :/

      I don’t have a public email and have cell issues here, but I put your info in my contacts and will delete it on your comment because I get a lot of search engine folks on here and don’t want anyone to have your info. My blog will still be active since I get questions and whatnot, so feel free to drop a line and I’ll get it, but I just need a break from gadgets that make me feel worse. I hope you can understand.

      Sending love back at you,
      A ❤

  12. Erika says:

    Hola! Lei tu hermoso post para Miguel que en paz descanse … me sacaste las lágrimas recordando a ese buen amigo, creo que todos los que lo conocimos pensamos igual que tu. Un abrazo

  13. cale says:

    Is there a way to get in touch with you? Your KC story sounds alot like my situation. It is VERY frustrating

    • Hi Cale,
      I just connect with people via my blog as I’m anonymous on here…and I’m no longer blogging, actually. Yes, KC is very frustrating, especially if you can’t tolerate lenses or have major health problems as well, which is my issue. You might want to contact the NKCF (www.nkcf.org) if you need more info and there’s a big group out of Great Britain for KCers that’s on social media. I don’t participate in that, but if you go to http://keratoconusgb.com/ and scroll to the bottom of their blog, you’ll see their FB and Twitter info.
      Take care, thanks for dropping by, and sorry you got hit with KC, too…
      A

  14. Naji Habib says:

    Hi there! I hope you and Moush Moush are doing well! I am writing you this because I need your help please! My 15-year old cat Arrow was diagnosed with Feline Oral Squamous Cell Carcinoma (FOSCC) a few months back. He underwent a mandibulectomy followed by another minor surgery to remove the tumor from his bottom jaw. Unfortunately, the soft tissue surgeon couldn’t get clean and wide margins during surgery…. Fast forward, Arrow’s cancer came back and is growing fast. Following the surgery, Arrow became anorexic and currently gets his food, water and meds through an E tube. He has had a total of 3 radiation therapy sessions and one chemo treatment. Prognosis is still bad despite all the treatments he has received. The oncologist wanted to try Palladia on Arrow but we haven’t been able to find a compounding pharmacy in the area that is willing to compound the medicine for us. Could you please share with me the name of the compounding pharmacy that helped you compound Palladia 10mg as an oral liquid? I greatly appreciate your help!

    Naji Habib
    7348467227

    • Hi Naji,

      I just lost a huge reply to you, ugh. Well, I’m very glad I checked my emails today! First off, I’m so very sorry about what Arrow and you are going through and know how hard that is. Thank you very much for the well wishes, but unfortunately I lost my beloved Moush Moush in early 2015, but she was in remission still (yay) so Palladis did work for her and she presumably had the genetic mutation needed. I also caught her cancer very quickly once again, but I’ve heard if Palladia works, it will work even on larger tumors. Just as a word of caution, her onco did tell me that if it did work, it would only work for so long and I never asked how long that would be as I was starting to get severe anxiety about the whole thing the second round. Anyway, I stopped blogging several years ago (thanks for the follow, though) and didn’t want to write about her death, but rest assured it was unrelated.

      So, we were out of compounding options by 2014 or so, as well. It had something to do with the drug manufacturer and they weren’t going to sell it that way anymore, so maybe that’s still the case. Her onco had cats and dogs that needed less than the lowest dose pill, so he called other vets and they were splitting pills and one at a very good oncology center in San Diego had been doing so for a long time without issue. So, that’s what we did. Of course, we had to find the right schedule for her and that ended up being a split tablet every 72 hours (the clinic should split these for you). Also, she did get the common side effect of GI issues, so I’d give her some liquid Metronidazole with her pill. If need be, that can be purchased from your vet clinic. Other than that, she had some mild, diffuse hair loss but I’d say she did much better with the pill as the liquid med gave her mouth sores, caused her to lose whiskers, and was just a mess.

      I send my very best wishes to you and Arrow and just try to stay strong. If need be, just push your onco to call around to see what other vets are doing, but this is what we did for probably a year or so and no new issues with the split pills. Oh, Moush Moush was about 5 lbs if that helps, so very tiny! Also, feel free to post an update if you feel like it (I don’t have a public email and stay anonymous on here due to some bad encounters online). I still get so many “hits” for Palladia, so I do hope my posts and readers’ comments are helping other pet guardians out there…

      A ❤

    • Naji,

      I finally remembered the name of the last compounding pharmacy the oncologist sent her script to until they also ran out: Diamondback Drugs (1-866-578-4420 or http://www.diamondbackdrugs.com). I am under the impression that compounded Palladia is no longer available as mentioned, but worth a try. The pills are much cheaper and it all turned out for the best in our case, but I hope I can give you a lead, at least.

      A

    • I’m so sorry, but I just realized that you said all MEDS have to go through the E tube, as well (of course). Did you see on my blog that I’m visually impaired? Ugh, I miss things like that all the time. I’m also currently living in an inferno, aka the SW, so not my best. Oh, I feel terrible now for all my useless comments. I thought Arrow needed a smaller dose of Palladia like my cat did and I don’t even know what she took, but thinking 5mg and 10mg is available by pill. I wish your vet could just pulverized that toxic tablet!

      Knowing that, I would try the compounding pharmacy I gave you first thing and hope the med is available again. I don’t know who exactly our vet talked to in San Diego about splitting pills, but this was a top center so maybe they have an idea for Arrow, too. I think this was the clinic as I can’t find anything like it via Google and I know they offered radiation there: http://www.vshsd.com/specialties/oncology. Again, our onco called as he knows the other vets there so I never spoke with them. Another thought is to have your onco call a university in your state with a vet medicine program. Our onco was connected with UNC-Chapel Hill, which I have been told has the best vet medicine program in the States. I hope any of these leads can help you guys. Fingers crossed and so sorry for my confusion.

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