chronic pain/fibromyalgia · disabilities · family · happiness · Los Angeles · writing

March Health Update: It’s Always Sunn(ier) in California

February was hard especially after a January that was a bit easier even if I couldn’t pick up the phone and wish everyone I’d hoped a “Happy New Year.” One relative (no Jewish guilt there) said she thought I was dead after it took me two months to return her New Year’s message. Okay, not dead, just REALLY worried.

I had to explain to this relative about how the joint pain and inflammation, particularly after April 2010’s wisdom tooth extraction surgery, has been affecting my face and as too frequently happens, I found myself apologizing for giving too much information because I could feel her tearing up on the other end of the phone. My older friends and family are too well-aware of the aches and pains that come with aging naturally and I know seeing this kinda illness in someone so young is heartbreaking for them. They’ve said as much. Older folk rarely manifest the discomfort, fear, even disgust, I see too often in younger folk who ask flippantly after my health and don’t realize if they ask, I’ll actually tell them. In detail.

I am definitely following my sisters’ orders to be more honest about my health and for the most part I have been surprised. People who made jokes or called me a hypochondriac got kicked to the curb. When I was generous, I gave them three strikes and then they were out. People who went above and beyond to be there for me, well, had to deal with me sobbing in their arms from gratitude for treating me like a human being, not a disease or a mental patient.

A local rabbi who became aware of my situation told me that if sitting through services was too hard, I should try coming to the shorter services or just at the end of services so people could see me and I could see people. Bring your pillows, stretch, hold a siddur (if you can hold one that day), daven (if you can murmur the prayers that day) but more than anything just come and remember you are part of this community. That’s not verbatim, of course but really, seriously, dude, where have you been all my life?!

I find that when you are sick, not just invisibly since my illnesses have been more visible this year, you can be in a room full of people and still feel isolated because people can’t imagine you have anything interesting to say. Everyone goes around the Shabbos table asking “What do you do?” I explain I am too disabled to work, trying to squeeze in that I used to teach, used to write, you know, used to be healthy enough to work. But even before I manage all that in one breath, the room gets quiet, awkward and I get ignored. UNLESS someone at the table admits they were a fan of my writing and my blog and suddenly all eyes turned to me and I’m a “person of interest.” It shouldn’t be this way but I’ve seen this happen so many times with other disabled people and elderly folks. They are invited to the Shabbos table but then excluded from the conversation as if they are invisible with few realizing they are missing out on the rich stories these folks bring to the table.

So, well, after waaaaaay too many–three, in fact, ER visits in less than 2 weeks in February–I am slowly recovering again thanks to my wonderful doctors, including the one who visited me in the hospital on Shabbos when he heard I had to be transported there via ambulance Shabbos morning. He even brought me snacks. SNACKS! Did I blog about this already because I feel like I’ll be blogging about this for the rest of my life?! A doctor brought me and my husband snacks to the hospital so we wouldn’t go hungry on Shabbos. Yes, there are really people like that in real life.

I still can’t believe how quick doctors here are to balance medication with alternative therapies for managing chronic pain. Way before Time Magazine decided to devote their March 7, 2011 issue to “Understanding Pain,” it seems that plenty of doctors here in “la-la land” realized that there is no magic pill to cure chronic pain. D-U-H. Duh. This is unfortunate in many ways, though, because it would be so, so, so much easier to pop a pill and be cured. Right now, recovering from the last year and getting to an even better place than I was before that is the hardest full-time 24/7 job I’ve ever had. And remember, I was a NYC public school teacher before all this! But my body is a much tougher boss than my former principal or even my former students.

I AM lucky to have a supportive husband, sisters and friends. People always ask them how I’m doing but few have ever asked THEM how they are doing. A family member or close friend’s chronic illness creates ripple effects in the world of those around them. It shifts their perspective and priorities. Not always in a bad way. It makes you appreciate a lot that you took for granted. On the day when the walking, the sun, the wind, holding hands doesn’t hurt, it feels like a miracle. Being sick, having a sick family member also helps you uncover some of the kindest, sweetest souls you didn’t know had that kind of heart to them. It pushes you to fight and stand up in a way you probably never thought you’d have to do (or in my case, ever thought you’d have to do AGAIN).

People were, as they often are when you don’t ask them, pretty vocal about the fact that between my writing career, my VERY public persona (giving way too much credit to how large my readership is/was), my health, my race, my “controversial views” on certain issues, my colorful past, my conversion! and large afro, my husband’s job prospects could be affected. That’s because they’ve never seen my husband who swears he can’t multi-task, cook a delicious Shabbos meal, write and practice a sermon, prepare for a Talmud class, teach a Bible class, drive me to doctors’ appointments, help me run errands and more in one day.

Some people think my husband should be “sainted” but he is the one who reminds me that unfortunately, fewer people get to see the stuff I do behind the scenes when no one is looking. People assume someone else, usually my husband, does everything (I wish! Especially the painful stuff!) for me but as my sisters and husband note often they’ve never seen my never-ending to do list or realize that being sick just means I operate at a lower capacity than I did before and since  I was “operating at the speed of light” before…I’m still getting way too much done for someone who really should crawl into bed or pass out on a couch more often.

But the worse of it after I make my endless to-do list, after the list of the things I physically and mentally need to do for my health (and to manage our household) is the stuff I need to deal with to get the current bureaucratic healthcare system. Its sole purpose seems to make it impossible in every way for disabled and elderly folk–especially those with “invisible disabilities”– the services they deserve without making them run through figurative hoops even when they LITERALLY have trouble walking. I’ve been told several times as my health expenses pile up, as the debt piles up, as the likelihood of me returning to part-time or full-time work gets pushed further and further into an unknown future, that I would probably never qualify for disability benefits. Not even the social security ones I earned. The system, both doctors and nurses have told me, is just that sick and that broken. I’m 30, I’m sick but “I don’t look sick” and that translates to “not sick enough.”

I remember one nurse telling me to look sicker because otherwise ER doctors don’t take you seriously, not even the doctors who know, who are trained to know that plenty can be raging on inside that doesn’t show on the outside. Once I was barely coherent and trying to explain how I felt and the doctor said, “Well, you seem to be doing okay now.” I remember my exasperated husband responding: “You don’t know what my wife is like when she’s ‘okay’. She isn’t okay.” Sometimes, it’s easier with people who never knew me when I was healthy. It is the friends and family who knew me when I was well who realize how really sick I am when they see how isolating and limited my life has become. They can still remember when I’d sigh about forgetting my shopping cart and then donkey-like carry 10 heavy grocery bags home by myself and never complain about being a little sore later because I had such awesome biceps.

On my latest ER visit, I met a doctor and nurse who obviously love their jobs. I find there aren’t too many of those. But these two made me feel like I was staying in a 5-star hotel (the Venetian in Vegas except the marble tub was a bed pan, yuck!) when it felt like the whole world was spinning (vertigo, apparently), when the pain felt like it was literally frying my brain irreparably (inflammation). I thanked them profusely explaining that most doctors I’ve dealt, especially in the ER, since 2005 haven’t been as wonderful and kind as they were that awful day. Many don’t even make direct eye contact or listen to anything I say before scrawling something on their prescription pad and sending me away. In their head, I can imagine them thinking “NEXT!” before they even walk in the room.

In some ways, the unfortunate circumstances that brought us to California came with the blessing…some of the best doctors I’ve ever worked with since I first became ill. I just wish I could afford them. Any of them. Most of them. All of them. When I was a teacher, I had the kind of healthcare I think everyone in this country deserves, one of those so-called “cadillac plans” where even dental is covered!You don’t have to be Canadian pop sensation Justin Bieber (who says “Shema” before every concert?!) to note that healthcare in this country is a mess, especially when illness is still one of the major reasons many sick Americans and their healthy caretakers are forced to file for bankruptcy.

And by the way, for all this love I’m showing for my California doctors, I want to say I’m not knocking my doctors in NY. If you need an incredible rheumatologist “in the city,” check out Dr. Robert Fafalak. If you need an allergist, check out Dr. David Resnick. Gasteroenterologist? Dr. Robert Weiss. Gynecologist? Dr. Joshua Waldman. Okay, that was TMI. Really, I wouldn’t have survived my most dreary years in NY without them.

Unfortunately, the bit of progress I felt I made in December and January has been set back quite a bit but I hope that slowly I can get back to doing all I need to do to maintain my chronic health problems. I have to keep reminding people that there is no cure. I’m just happy that physical therapy for my face means I don’t have to smash up my bananas to eat one. Sorry, just because I look “less sick” that day doesn’t mean I “feel less sick.” Sometimes, I’m “covering” and other times, I’m making the tough choice between isolating myself at home with the pain or risking my health some more for some much needed human contact. Sometimes, the whole time someone is talking I’m thinking, “Why didn’t I just bring my cane? Are my knees going to cave in during this conversation?”

But hey, thank G-d, I am already 2 pounds away from where I was before Dental/Stomach crisis 2010 and hey, with your prayers, maybe I can get back to healthier than I’d been before I got sick in 2005. And not to much to ask, 20 less pounds? My knees are a little happier already and my joints would do even better with 20 less pounds of pressure. My stomach, too, is better. Caffeine is never going to happen but the little bits in cocoa don’t give me excruciating pains now. My relatives in DR (Dominican Republic!) would be elated to hear about all the alternative therapies I’ve been using for my health these days, especially my stomach, because they would have told me about them already if I’d asked. Okay, but I’m still not rubbing rosemary on my receding hairline. 🙂

Now, remember how I feel about unasked for health advice. I get plenty from friends and family and I definitely don’t accept it from strangers. Sorry. That’s my boundary and as you know, this blog seems to suggest I could always use more of those. If I need advice, I will ask for it. I’ll be posting some on my fan page soon enough.

Please don’t get too excited about the sporadic post, Tweet and Facebook post. The computer is still not my friend. (YES, I HAVE ALREADY TRIED SPEAKING SOFTWARE. SIGH!) I have to use it carefully and avoid it as much as possible these days. But the isolation of my illness has made me realized that I missed writing, I missed my readers, I missed the people who reminded me that no matter how sick I am there is still plenty that I have to offer the world. Though, my agnostic relative thinks the big lesson in all of this is that I’ve got to stop being Superwoman, gotta stop taking care of everyone else and learn, just a little, to be dependent on others, to stop shouldering the burden alone. 

Thank you to those of you who send me emails reminding me I am in your prayers even if I can’t respond to all your letters.

Related: 

“Healing the Hurt” & “The End of Ouch” (Time Magazine)

NOTE: As I reiterate numerous times whether I post about my health, please subvert any desire to respond to this post with a suggestion of “things I should try” for my health. I will ignore and delete any such comments whether they are posted here or emailed to me directly. If you are confused as to why, click on the “chronic pain/fibromyalgia” tag and read ALL of the previous posts.

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