Some Time in the Hospital, a New Diagnosis, and a Tor.com shout for Field Guide to the End of the World
- At August 15, 2017
- By Jeannine Gailey
- In Blog
- 10
First of all, thanks to Abby Murray and Lish McBride for writing up Field Guide to the End of the World for this feature on Tor.com! This was a bright spot in an otherwise challenging week
I spent the last three days admitted into a hospital – after a week of repeated trips to the ER, collapsing with dehydration and fainting and cyclical vomiting – hooked up to IVs, getting lots of MRIs (three!) and giving lots of blood. Before that, I’ve had over a month of very strange symptoms – dizziness, nausea, vomiting, inability to keep down food, and strange heavy feeling in my lower legs, with wobbliness and my knees giving out. At the hospital I had a neurologist specialist work me up along with the hospitalist (along with, among others, a nutritionist, an occupational therapist, and a physical therapist.) It should be said here vomiting is one of my most hated things in life and the other is being hooked up to a damn IV. Even at a very nice hospital with private rooms and big televisions and pretty surroundings, like Swedish Issaquah, no one loves being in the hospital.
Several different radiologists and neurologists have decided my symptoms, combined with a rather devastating new MRI of my brain, mean I have probable MS. This has qualified me to be worked up at the best MS Center in Seattle with one of their top doctors. (If these doctors hadn’t interceded for me, there’s almost no way I would have made it in with their doc within two weeks notice.)
A Year After I Received a Terminal Cancer Diagnosis, I’ve Received a Positive MS Diagnosis.
A year and a half after I received a terminal cancer diagnosis at an ER in Redmond, I’ve discovered that my neural lesions, which had been watched for over five years and stayed pretty static, had changed, grown, spread, and generally developed a pattern that looked a lot to the neurologist and radiologist like MS. (The medical terminology is “McDonald’s criteria.”) Because I cannot have a spinal tap – the usual way to get a diagnosis – my diagnosis has been slow to come, even as I developed more lesions and more symptoms. This latest weirdness has been termed an official “MS flare,” which typically last thirty days and bring lots of symptoms on to the unwary MS sufferer.
MS is not as scary a diagnosis as terminal cancer, and MS is treatable – though we don’t know yet what kind of treatment will work for me. Currently I’m on a giant cocktail of meds to get me through the time when the MS specialists will decide what the best treatment for me is (because of my other health conditions, they didn’t want to do the usual throw a huge dose of steroids treatment at me. Though I might have welcomed it!) My brother came to visit me in the hospital, and my parents flew out to Ohio to help Glenn as right now I am termed a “fall risk” and can’t be left alone even if I wanted to be. Getting out of a chair or taking a shower have become huge difficult challenges for me all of a sudden.
Anyway, it’s been more than a month since I could focus on being a friend, a writer, or even a decent human being, so I apologize – – but just trying to survive the constant vomiting – along with a huge decrease in my ability to walk or even stand unaided – has been a real bear. I hope that the new cocktail of drugs will work until they can get me under a more stable treatment plan. Think good thoughts for me as I am dealing with a new reality. I said to a friend that MS wouldn’t even be the scariest thing – or the thing most likely to lead to be death – that I’ve been diagnosed with. But it is still a challenge as I learn the new reality of my body, which constantly morphs. Like Buffy, you learn to defend yourself against one monster one week, and the next week, another pops up and you start all over again,
Mauro Claudia
Oh Jeannine. No words of course. Sending love and witness. And Buffy is a great role model for this and all things really. When I was last down with bone surgeries gone wrong, I discovered the audio book versions of the Jim Butcher’s Harry Dresden books. James Marsters (Spike) reads them, and it is my fav audio acting and series of all time. Chicago detective urban-fantasy wizard noir. I started w book four, Summer Knight. He seems to hit his stride as writer there. GREAT woman characters beautifully developed over the series. It has helped me through a lot of medical nightmare. And I’ll talk Buffy and the like with you anytime. XOXO Claudia
Lesley Wheeler
Good god, Jeannine. What an awful rollercoaster you’ve been on (hope that isn’t a nauseating metaphor!). I’m thinking about you and hoping access to new specialists ends up bringing you some genuinely helpful treatment. Let me know if you need anything that a poet 3000 miles away can help with!
Jennifer
Wow, have you been through it. Hugs and strength to you, Jeannine.
Felicity
Love you.
Deborah K Hammond
You wonderful woman, I am so sorry about this additional diagnosis. And so grateful for you and your work being here in the world. Do whatever you like and can to keep peace within. All my love and hopes are with you.
Susan Reese
Oh. Jeannine, I have such mixed emotions as I worry, and also give thanks for a concrete diagnosis you can fight, sweet Warrior Princess. You can and will live with MS. One of my dearest friends does exactly that, and though it has changed what she can do, it has not limited who she is nor how she lives her life, fully. Hopefully this flare up will be brief and with correct treatment you can resume your marvelous, creative life. My BFF’s brother, a skydiver, surfer, adventure guy. He”s had some flare ups, and then hikes 10 miles. So hang in there Unicorn Princess, draw on the vast love that surrounds you, lean on Glenn, and let me know if there”s ANY way I can be helpful to you. I love you.
Footnote: I had left knee replacement surgery this morning and I’ve already walked, with a walker, to the bathroom!
Jan Priddy
Dear Jeannine, know that we love you and you remain a courageous soul providing a light for us all.
Jeannine Gailey
Thank you all for your love and wonderful supportive messages. I’ve been a little out of it on the nausea drugs and the lack of sleep, but really appreciate all of you!
Alison H.
Oh my, what an ordeal. The good thing is that you have a diagnosis, which is a starting place and a relief, possibly. I’ve been a friend/volunteer/poetry scribe for 12 years to a woman in a nursing home with primary progressive MS, one morning a week and sometimes more. She has amazing knowledge about vitamins, herbs and food, and what causes her pain and problems, and she has tried different diets to see what helps. She goes to the chiropractor once a week (and she’s on Medicaid) and I sometimes give Reiki or send distant Reiki to her. She has a cadre of volunteers to do tasks for her, because she is a great friend and we all love her. Love and good energy to you, Jeannine. I think of you often. <3
Christine Potter
Jeannine, I’ve been following your travails with sympathy–and I’m glad the diagnosis you received (although nasty) is not as awful as last year’s by far! Have been loving A Field Guide… and am rooting for you out in internet land!