Help Lezli Robyn Deal with Medical Challenges

Hi folks! I stopped sharing this fundraiser because we were able to get some assistance in addition to what was raised here, unfortunately that assistance has run out and Lezli is worse physically than I've ever seen, having added a new rare condition to the roster, called phrenic nerve spasms. I believe it is related to the nerve inflammation that is causing the excruciating headaches. I have seen, over the years, the symptoms showing up from time to time (she would have difficulty swallowing, in particular, and would choke a bit). This condition has worsened to the point where she is having trouble speaking at all. It's pretty excruciating, y'all, to have someone you love (and especially such a verbal and talkative someone) struggle to form words at all because the phrenic nerve spasms are wracking her body. It makes it difficult to swallow (she's on soup and liquids only, with the occasional bowl of soft noodles or tofu).

There's hope, the doctors say if she can just rest and do as little as possible she can recover, and she is slowly working out ways to trigger it less, but she can't earn much at all when she can barely even sit up or raise her arms without causing uncontrollable diaphragm spasms that affect her breathing (to the point the hospital thought it was asthma and mistakenly gave her so many asthma meds they triggered a cardiac arrest which she is also recovering from). I tell you, I have never seen anyone have medical luck this bad, but I do think all these conditions are interlinked.

The post-myxedema thyroid results are finally improving and look normal with all the meds, so hard-won forward progress is being made, but fair warning, this new complication may take months to resolve, and I don't think we can expect her to bounce back super-fast. She just really needs the time and support from the community to help her to do this. I want to see her worrying about her health and rest ONLY. In the past six months alone she's had tens of thousands in medical expenses, even with insurance (which is fighting her every step of the way.)

She has a donated recliner chair and a laptop stand arriving in the mail which may help her to work more going forward, but hasn't been able to work at all for the past month. She has what I can only call an indomitable fighting spirit, but what she really needs is to be as gentle as possible on herself and that's not possible without financial assistance at this point, even though I know that fact is painful to her. Lezli promises me she will write you all a longer update on the medical situation once the chair and stand arrive and get set up. This means that anything you can spare to help her and her chiweenie Bindi will be extremely appreciated and make a huge difference. I am thankful for your ongoing care for an excellent editor and writer who has done much for our community. If you can't contribute financially, liking, commenting, and sharing are all ways to help and are appreciated. You can also contribute directly to her Paypal at lezli DOT robyn AT gmail DOT com.

***********

Those of you who know Lezli Robyn know that she has had a terrible run of medical bad luck for years now, from near-blindness to an excruciating case of occipital neuralgia which requires her to have nerve blocks every two months in order to function. She also had to have her thyroid radiated/fried several years back due to a thyroid storm that nearly took her life, and now unfortunately she's facing the opposite problem: extreme hypothyroidism.

She was admitted to the hospital on Wednesday October 30 for myxedema -- doctors said she was at severe risk of going into a myxedema coma, which is life-threatening. Her TSH (thyroid) level was around 126 (should be below 4.65) and she tells me the medical professionals she asked said that they had never seen a number that high before, not from a person who could still string sentences together. Staff who also had hypothyroidism were horrified and had no idea how she could function with a TSH of 20 or 50, let alone 126.

She went to the ER with severe tiredness, stroke-like symptoms and an almost-inability to move her left side. She was remarkably chipper mentally for all of this, because her spirit is strong, but myxedema means that your organs are essentially shutting down because they're out of fuel. Myxedema also results in swelling from the buildup of carbohydrate and sugar compounds in the skin and tissue. She has been showing symptoms of this since August. It made her skin more vulnerable to some extreme allergic reactions (resulting in hospitalization), and it is believed to have worsened her leg infections (look up pretibial myxedema). What is certain is that the swelling contributed to a freak case of Quincke's disease, which is when your uvula swells up and obstructs your breathing, meaning that she has had to puree her food to eat it and was constantly choking. It was terrifying to listen to my lovely Lezli rasping and choking as she fought that off.

She IS fighting, but this is all very debilitating and as you may recall from earlier this year she's already been put through the ringer like no one else I have ever seen. She's managed to edit and travel for work, and is definitely still her lovely, down-to-earth, and funny self, but can't work during the current situation.

What's the financial situation? She won't even let me tell you all of it, but I'm sure you can imagine how expensive the many hospitalizations were before the new insurance kicked in. There will still be high expenses associated with this new six day hospitalization. Her current insurance has repeatedly denied even obviously needed things like her nerve block shots at $330 every two months and her non-generic thyroid medication. This abuse from insurance companies really ought to be criminal, but it isn't -- and it's still very much better with them so I'm concentrating on being glad she has insurance at all, considering how bad it was before.

She has asked me not to focus on the medical debt for this fundraiser, but on getting her through just the next couple of months. She's been working some up until last week, and her amazing employer Shahid Mahmud of Arc Manor/Caezik Books has been incredibly understanding of her shifting needs. I know she feels like "a failure" for needing another fundraiser because she told me that, but I don't see how ANYONE in her circumstance could have done better. I would like to see our culture get rid of corrosive shame which associates people's self-worth with their health levels. It's clear that Lezli needs time to heal, and I don't know what that's going to look like. Merciful heavens, I hope it doesn't take that long for her to heal and get back on her feet but realistically I believe it will take awhile.

Lezli has been reluctant to ask for anything at all, especially since she's been receiving so much help throughout and owes so much gratitude to the people who have already chipped in to support her during this nightmare, so I've had an uphill battle getting her to agree to accept help now, but at this point there's really no choice. I believe we should be asking for $7,500 at least but she won't let me so I'm setting it at $4,500 as an attainable amount that will cover her basic expenses for the next few months and some of her hospital bills. I can't tell you how hard it has been to watch my good friend deal with so much, and I hate that our true medical insurance in this country is community support, but I am grateful that there are so many people in the community who understand how awesome and talented Lezli is and who want to see her get better as much as I do. She can't make it through this without us, so let's show up for her, with my profound gratitude for all the help you've already offered. Please also put some good energy into the thought that Lezli will get much better quickly.