Tuesday, July 30, 2013

A wife dies, a mother dies, and I'm still here

I'm still coping with the aftermath of lithium toxicity. This past weekend I learned how much Benadryl is too much, since taking some (okay, a lot, I couldn't sleep) on Friday night left me nauseated and weak all day Saturday. My contused coccyx is feeling better, and I went to a chiropractor to address the residual lower-back pain, which helped.

I also heard again from Monsieur Marocain. He called late last Thursday night to ask why I wasn't responding to any of his texts. I told him that my land line doesn't accept texts, and neither does my cell. I thought we'd agreed to talk again on Sunday morning, but I haven't heard from him. Whatever. At least I know I haven't screwed this up yet -- it's not on me.

A few months back I wrote about two genius high school classmates of mine who died recently. Now I want to write about two co-workers of mine, a social worker and a counselor, who also recently died.

I have to say, I wasn't a huge fan of the social worker. When I got switched from my first clinic to my second, she was forced to cover two clinics instead of one, and I think she blamed me for it. Although she could have covered just one clinic -- my original -- and left me to cover one clinic in Brooklyn and her original clinic in Manhattan. But she fought to stay at her original clinic, offering to cover it as well as my first. Still, she was cold to me for a long time. Just as she was warming up and we were being collegial again, she suffered a double brain aneurysm. Found dead in her bathroom by her devastated husband.

Granted, she smoked. Which is a huge cardiovascular risk factor. But I was struck again, especially after my spate of lithotoxicity, at how incredibly durable I seem to be. And if I died, I wouldn't leave a devastated spouse. I know, I know, there would be a bazillion devastated friends and relatives. It just doesn't seem quite the same.

More shocking was the death yesterday of a counselor I used to work with at my first clinic. She was a very bright and cute young woman, very up on her game, interested in getting her MSW and furthering her career. She had a six-year-old and two-year-old twins when I worked with her. Today, an eight-year-old, two four-year-olds, and a two-month-old infant are motherless. That is a tragedy.

She had a scheduled C-section and tubal ligation. Took two weeks vacation time and went back to work. They think she suffered an embolism.

I'm taking two weeks to recuperate from my surgery in September. (If it actually happens... I'll get to that.) But my surgery is laporoscopic, not hugely invasive. And I don't have to take care of four children under age 10 (including a newborn) while I recover.

Right now, I'm lucky: I don't actively want to die. I don't have to fight those dark thoughts of knives and Tylenol-PM. But I just don't understand why I'm still here, especially when it seems like my entire life is going to be an endless, joyless drill of struggling to function at work, then spending all my down time imprisoned at home.

Dr. Sharp called yesterday: my insurance denied coverage for the surgery. Apparently I'm not suffering enough. I let him know that I've gained about 10 pounds since he met me in March because I almost never go anywhere after work or on weekends. I didn't mention that the lidocaine is potentiating my lithium and making me sick, since I don't have strong lab work to back that up; my organs are still functioning even though I feel miserable.

I don't know what will happen. I hope Dr. Sharp and Dr. Kind will be able to talk my cheap-ass insurance into covering what might be life-saving surgery for me. Alona recommended I get an attorney; maybe it will come to that. Wonder if I could pay the retainer with my flexible spending pre-tax dollars.
Copyright (c) "Ayelet Survivor"

Wednesday, July 24, 2013

Coccyx contusion (I fell on my ass)

Call me "Ayelet Shlimazel." A week ago, I set up my cane seat near the bus stop where I embark upon my morning commute. There's no bench near it, and the pavement is decoratively uneven -- oddly tilted bricks with generous portions of concrete between them. I must have set the chair at an inopportune angle, because it broke and I fell right on my ass.

I've done this before. Not with the chair, but fallen on my ass. I'm quite accident prone. Ever since I sprained both ankles almost simultaneously when I was 17, I've had a number of relatively injuries, affecting my ankles, knees, hips, and lower back. A lot of pain, even though nothing was ever broken or torn. I think my initial injuries were the result of my hasty, impulsive nature -- literally rushing in. Subsequent injuries were facilitated by the previous injuries, which kept me always slightly off balance and vulnerable to another fall, sprain or strain.

Fortunately, I travel with ibuprofin and tramadol. I went to work, muddled through the day, and then went to a critical care walk-in medical practice. Was diagnosed with a coccyx contusion or bruised tailbone. The doctor gave me 15 Percocet and told me I'd be sore for a while. Which I am. As a counselor I work with put it, "This fall set you back 50 steps."

I'm feeling better, but not well. Definitely not well. Definitely not well enough to go on a date. So I shouldn't be disappointed that I somehow scared off yet another online suitor.

Monsieur Marocain found me on OKCupid. He's 48, Jewish, not too repulsive in appearance, and doesn't seem to have a job.

Bonjour! How to start, well, I had a chance to travel all over great nations, I grow up in Paris I am a French Jew, but still missing the real partner in life, has affection for animals and nature.

I am very active person, I always like learning something new because it makes my life more interesting. This life has plenty of different sides and I love exploring it! I love to read foreign literature 16th century. I play piano, fascinated with History, and classical music. I like finding out new things, experience new feelings and emotions and this is why I am sure that I have a lot of things to share with you.

I used to live in LA for 3 years, missed Oxnard farms and SF, but I love NYC, the park, the daily adventures, lol

I play piano, saxo, drum, guitar, I prefer to listen to real music, I am not into hard rock music, but I am interested to all kind of music.

i came from a large family, 6 and 4 sisters, i was born in south morocco, but grew up in Paris , France…

I am a real gemini, love to challenge myself, I am a graduate from SBU in Biochemistry,Now i take time for myself and enjoy every moment, i enjoy it, give me time to travel, discover new places I always try to keep busy doing something.

Favorite books, movies, shows, music, and food: i judge a person with the size of his bookshelves, My father use to teach us to organize books acoording to their century. Let side of my bookshelves are the spinoza era..., beaudelaire, Zola, montesquieu, Monpassant, alain, Freud, Nietzche. i play piano, guitare, drum, saxo, violon, my last opera was from Verdi with a wagner touch. and your type? circle du soleil?

I can't fault him for his writing -- English isn't his first language. He definitely seems cultured and educated. But what's with taking time for himself and traveling?

He wrote to me on a Sunday:

How's your day, are you working today, we have a lot to share, I just got home, are you in town, I would like to know you, txt me if you are interested, we can have a drink, 818 xxx-xxxx
a Bientot

Why would I be working on a Sunday? Okay, I realize that sounds suspicious. Be nice, Ayelet.

Bonjour MM, thanks for writing. No, today I'm just relaxing. I live in Manhattan. Where do you live? 

Took every ounce of self-control not to ask, "What do you do?"

I live in Brooklyn, Midwood. not so far from the beach, lol, what did you do for your bday,
we can talk 818 xxx-xxxx

I guess he saw that I had a birthday recently. Or he's been watching my profile and watched my age change. I decided to be bold and call him, but there was no answer and I didn't want to leave a message.

Tried calling, I guess you were out. How did your travels lead you to Brooklyn, of all places? ;)

He responded very quickly:

oh sorry, I was cooking a nice fish for dinner, I will save you one, it's a red snapper with a lot of herbs, voila,
I travel a lot in my life, but now, that all I want to relax, buy a house get a family and then travel again, lol

Well, I do like fish. But before I could respond he wrote again:

what are you doing ! 212 #? 873 xx 21?

For some reason his caller ID only captured 8 of 10 digits.

Snapper with herbs -- nice, I'll take a raincheck ;) Sorry we didn't get to talk yesterday. Maybe Wednesday? Have an easy fast. 
Tuesday being Tisha b'Av. I wasn't fasting, but I didn't think that it made sense to talk right after the fast.

it will be better, , have an easy fast,
a Bientot

But he couldn't stop himself from emailing me during the fast:

salut Ayelet,
hows your day, I am free later, we can break the fast together, lol 
I ignored it. "The Rules" say you shouldn't respond quickly to messages, and you shouldn't respond to every message. So I tried calling him on Wednesday, and again he didn't answer.

Tried calling but you didn't answer. You can try me at 212-873-6821, but please don't call after 9 p.m. 

Because I have to get up stupid early for work.

oh, it was you, I was with my bank on the phone ok, I will call, MM 

Except he didn't. Not on Thursday or Friday. So I wrote back to him on Sunday morning:

shavua tov
He responded promptly:

shavua tov, how's ur day so far, I am home in Brooklyn and u? 

A friend and I were going to brunch for a belated birthday celebration.

so far so good, having brunch with a friend later 

Was that where I screwed it up? Because all he responded was:

good enjoy your day

Throwing caution to the wind, I wrote:

do you still want to talk sometime?

Radio silence.  So how did I screw up this time?
Copyright (c) "Ayelet Survivor"

Monday, July 15, 2013

I got sick because I live alone

I went back to work after two weeks of suffering through lithium toxicity, readjusting to a lower dose, and multitudinous trips to several doctors. My UTI bacterial levels were subclinical, so my doctors are going to monitor but not prescribe antibiotics just yet. My psychiatrist is happy with the effect of lowering my lithium dose. And I scheduled my annual mammogram and what seems to be developing into a semiannual uterine sonogram to track my burgeoning fibroids.

Most of my colleagues appeared geniunely happy to see me, and I was glad to see almost all of them. The clinical director had told everyone I was going out on leave and wouldn't be back for months. This surprised me, since I told her last week that I was getting better and hoped to be back today.

When I emailed her and my supervisor to let them know I was back, she sent me a slightly ominous response:

Glad to hear you are back. There may be an issue with using your vac time for the last week. I am checking on this.

Ominous because I'm not yet eligible for more leave time after my leave this past February/March. Also infuriating, because I have almost three weeks of vacation time, since my knees hurt too much for me to go anywhere or do anything. I've used up all my sick time, and now they won't let me use my vacation time -- which I'll lose the second week of August after my "anniversary" of the day I started work in this institution?

I'm just hoping for the best. It's out of my hands. Also out of my hands: the original surgery date, August 5. Since I missed the first two weeks of July, I can't take off the first two weeks of August. Which relegates me to another six weeks, at least, of the damned lidocaine patches. The surgery has been rescheduled for September 17.

Surprisingly, I didn't schedule it with the surgery coordinator, whose communication skills are rather lacking. My insurance has required me to go through a certain amount of physical therapy before they'll approve the surgery. She told me the wrong number of sessions that I had to undergo before approval. And then I got sick. I scheduled the final PT appointment, told her the date, and figured I'd call her to schedule the final pre-surgery appointments, blood work, and surgery. But instead I got a call tonight from the surgeon, Dr. Sharp. Startling.

Dr. Sharp and I discussed the physical therapy scheduling and approval issues. He suggested I have the surgery on September 10. But I figured, why not schedule it right before Succot and Shemini Atzeret? I'd be taking those days off anyway, but with my knees in the pain they're in, I can't go anywhere for the holidays. So I might as well use them to recover from the surgery. My new surgery date is September 17.

After I got back into the clinics this morning and said hi to everyone, I had a wonderful heart-to-heart with the vocational counselor, Vic. He is a very wise and gentle man with a colorful history. Over the past several months we've gotten very close, confiding in each other about our frustrations with the administration, some of the employees, and a few of the patients. He's been a great sounding board and helped me talk through several tricky situations, especially office politics, at which I am decidedly unadept.

While out, I had thought about what I would say to my colleagues upon my return, and I wanted to tell him the truth: that the heat and the lidocaine patches had affected my lithium levels and made me very sick. That I'd been feeling poorly for weeks, maybe months, urinating several times a night, exhausted, irritable -- but hadn't made the connection between how I felt and my lithium dose. And he stated an excellent point:

"You didn't realize how much you were affected, and because you live alone, no one was observing you closely enough to realize that for you," he said. Sad and true. Wonderful as my friends are, there's no substitute for the day-in/day-out observation of someone who cares tremendously about your well-being. And right now, I just don't have that.

He wasn't pitying me. More like, he was deploring the absence of someone in my life to care for me that much and help take care of me. Sometimes I wallow in that sense of deploration. But I changed the topic, because right now, I don't have that kind of presence in my life, I'm not likely to find it anytime soon, and I'm used to taking care of myself. Granted, recently I haven't done the best job.

In any event, it was so liberating to be able to talk to a clinician colleague about my experiences with medication, hypomania, depression, and hospitalization. He now respects my experience, competence, and expertise even more, knowing how hard-won it is. Vic is the third person at this institution (outside Employee Health) who knows of my diagnosis. Part of me now wants to tell everyone, but the rest of me is well aware that's not advisable.

Just need to schedule an appointment with the dentist, and a several-hour block of time for pre-surgery blood work at the rheumatologist (which apparently doesn't really overlap with blood work at the surgery practice). Then I'll be completely on top of my current medical needs.

Except for that caring person with an everyday presence in my life, but I checked my medical insurance directory and I can't find a provider who can supply that.
Copyright (c) "Ayelet Survivor"

Thursday, July 11, 2013

Slowly feeling better

For the past two or so months, I've been feeling drained and exhausted. I thought it was the stupid 5:40am wakeup time. But I'd get up, go to work, come home, and do nothing. Partly that was because after I take off the lidocaine patches it hurts to do anything but sit.

Within the past few weeks, though, I was feeling much worse. And last week, I felt awful. I thought it was because I stopped the fish oil supplements. My doctor (business partner of Dr. Cool) disagreed, and thought my lithium levels might be too high. She took some blood on July 2. Which, due to holiday closures, I didn't see results on until July 9. Interestingly, my lithium levels were low, and my white blood cell was slightly elevated.

However, before I got the results I analyzed how I was feeling (nauseated, weak, heavy, trouble concentrating) and realized it bore a significant resemblance to lithium toxicity. So I reduced my dose to 600 mg, down from 900. I spoke to Dr. R and then saw him before the lab results were in. He approved of the reduction in dose -- even when the levels came back low. Because between the heat and the lidoderm patches, my dose must have needed adjusting. And after reducing my dose, I felt much better.

But not great. And we couldn't figure out where the infection was. Until I realized that part of the reason I felt so tired all the time was that I was waking up several times a night to urinate. There's been no fever or burning sensation, but the frequency could indicate a UTI, to which I have been prone in the past.

I'd been ignoring this symptom because I've been frantically making a million pre-surgical appointments and a billion phone calls and emails trying to make sure insurance will cover my upcoming knee surgery. Which will now probably have to be postponed, because having an active infection isn't a good way to go under the knife.

I'm feeling slightly overwhelmed juggling all my medical problems and trying to take care of everything before my August 5 surgery date, although my friends have been incredibly supportive. And worried about missing so much work, even though I was updating my supervisor frequently. But this morning I got a slightly frightening email from the clinical director of the program:

You have been out since July 2 (6 days). Please submit the leave of absence papers that you had requested previously.

In addition, I need some communication from you when you are out this long.

Yikes! But I stayed calm and responded:

I apologize. I have been in touch with [my supervisor] throughout my absence. I contacted the leave of absence people before July 2, and they told me I have not yet accrued enough work hours to take another LOA after my leave in February-March 2013. Then I got sick.

I will have to use vacation time (I have more than 96 unused vacation hours that I must use before August 11, my anniversary date) for my absence. I am dealing with an infection as well as a reaction to the heat that necessitated a change in my medication. The initial lab work I had done on July 2 was delayed due to the holiday, so that I did not get the results until Tuesday, and then I had to have follow-up work done yesterday. The surgery I was supposed to have in August will have to be postponed.

I apologize for the inconvenience. I was not expecting to have such a severe reaction to the heat and the medication (lidocaine patches. in addition to other medications I take), on top of an infection that has been difficult to pinpoint. I am trying to get the lab results from the subsequent tests as quickly as possible and hope to be back at work on Monday.

And it worked.

Thank you for getting back to me so quickly. We will use your vac time.

I guess it's a good thing that I've been too immobilized by knee pain to go away or do anything fun in the last 6 months. And it's not such a bad thing that the surgery will be postponed. I don't want to feel rushed or stressed about it, and I certainly was before I got sick.

I'd rather take care of everything at a more measured pace. If that means I need to wear the lidocaine patches for a little longer, then so be it. I have to go for another uterine ultrasound because on top of everything else, my gynocologist says my uterus is bigger. I'm certainly not pregnant, so it must be fibroid growth. Hopefully externtal. I also really need to go to the dentist.

So no more rushing around. Hopefully the urine tox sample I left at my latest doctor's appointment will yield results that require antibiotics as more proof that I'm not malingering. I'll reschedule the surgery. I'll schedule the remaining pre-surgical appointments. I'll schedule appointments for the uterine sonogram and the dentist. And I will relax and think positive.

Of course I'm a little nervous about reducing my lithium dose. I don't want to get hypomanic or depressed. But I'll watch myself carefully. And my friends will as well.
Copyright (c) "Ayelet Survivor"

Tuesday, July 02, 2013

Fish oil withdrawal

Fish oil is good for a number of things, including brain and cardiac function. I've been taking fish oil supplements for a long time. But fish oil also inhibits clotting (probably how it helps cardiac function), and with surgery scheduled for August 5, I thought I should stop taking it. So when I finished a bottle of it Saturday night, I didn't open a new one on Sunday.

Yesterday I felt listless and lethargic all day at work. Not feverish. Just weak, as though gravity had somehow increased, and neauseated. Didn't feel like eating, which is rare for me. I went to bed at 5 p.m., got up at 9 p.m. to take my medications, and slept through the night. Today when I got up, I felt worse. Hated to call in sick, since I called in sick a week ago with knee pain. But I could barely move, still felt nauseated.

I tried to think of what could be the problem. I wondered if it could be related to my use of the lidocaine patches. But I've been using them for less than the recommended 12 hours per day. The only other change, I realized, was stopping the fish oil. I guess I can't stop anything abruptly. If I've had severe reactions to starting some supplements that didn't agree with me, like valerian and passionflower, then stopping a supplement that I've gotten used to could also cause problems.

Another problem; my absences from work and taking leave. Apparently I haven't worked enough hours this year, because of my leave last winter, to take intermittent FMLA. Not sure if I'll be able to take off two weeks for the surgery this August. I'm trying so hard, it's so frustrating. I can't even write really well about it because I still feel completely drained. I have to check if I have any vacation time left, maybe I'll have to use that. I haven't been paying attention to vacation time and sick time, because every time I take off isn't really optional, but I need to figure something out. That makes no sense. I'm going to go lie down.
Copyright (c) "Ayelet Survivor"