Tuesday, February 05, 2013

Virtual hugs

I got a lot of virtual hugs today. After undergoing MRIs of my aching knees, I successfully negotiated for the CD to be delivered to Dr. Dashing, since it wasn't ready when I was ready to leave. I have to say, I've been very effective this week for someone next door to crippled. The icy receptionist melted when I softly but assertively reiterated that I was in pain, I couldn't come back, just couldn't stand climbing up and down all those subway stairs again, could the CD be delivered to my doctor before my appointment tomorrow at 10 a.m., oh thank you so very much...

I worked a similar mojo yesterday with Dr. Dashing's office. Last week I was passive, waited for him to call, didn't badger. But after I scheduled an MRI yesterday and they told me I needed authorization, I called Dr. Dashing's office and very nicely did not leave anyone alone until they called my insurance and obtained said authorization. It's so weird to act contrary to my nature. To cajole rather than demand. But it seems to work. I guess I'm getting in touch with my inner Southern belle.

Anyway, I got home, knees throbbing like a samba beat, and of course logged onto Facebook. As my nephew Oedipus says, "It's so nice -- I can always find you, Aunt Ayelet, because you're always on Facebook." I also threw down a few tweets, and my friend Esti, who lives with chronic pain, responded to one.

Ayelet (via Twitter): If the MRI shows no problems (as usual), I will ask my Dr. for a prescription for a customized wheelchair, so I have mobility.

Esti: I'll tell you the truth Ayelet. for sure I qualify for one of those. yet, I have consistently refused one and prefer to hobble along with a cane or a in store model b/c I, as a RN, have seen way too many cases of "if you don’t use it, you lose it."

Ayelet: I can't hobble with a cane when both knees hurt. And who said motorized? There's nothing wrong with my arms and upper body.

Esti: I have a wheelchair, in the basement.. but I only use it for the zoo... for the grocery stores, even though I know I start out power walking and hobble out like I’m 90~~ its still exercise and its still my own strength

Ayelet: I cannot go to work and run around two clinics all day.

(Around this time I got an email from my friend Gloria Chang and started a conversation with her as well, which follows.)

Esti: yes, that is a large reason why I have retired.. not judging Ayelet.. just commenting on this process...I definitely do not have the stamina to do my job as an RN and if I tried, I would burden the other RNs beyond tolerance with my sick leave due to pushing myself beyond my capacity.

Ayelet: I can't retire because I have no proof that I'm disabled enough to retire. I can't move back in with my mother because the degenerate pervert still lives there. I can't move in with my sister because she's horrible. It's wheelchair or suicide at this point.

Esti: suicide is not an option dear... how bout a nice shot of vodka? oy I’m a bad influence. wish you were here, I'd show you all my gazillion coping mechanisms. I do wish you a refuah shleimah from the pain. it sucks, big time.

Ayelet: Temporary solution to a permanent problem. Opposite of suicide. Unless you indulge too frequently. How DO you cope with the pain?

Esti: I have sort of a sliding scale of modalities... first (which one would think would be no problem but it is b/c I cannot afford my basic med regime..) my regular medications: prozac 40 mgs, cymbalta 60mgs (these are for PAIN , not for depression ), 800 mgs of ibuprofen, 100 mgs of tramadol (boosts the ibuprofen)
(when I am unable to afford regular meds, I become like I am now, stiff and sore and rely on much more narcotics)

Ayelet: How can you afford narcotics and not Prozac?

Esti: next level is dependent on what needs to be done that day: if nothing, I manage pain by napping -- a brief but complete slide into sleep relieves a TON of pain.

Ayelet: Is Cymbalta still on patent?

Esti: I can afford the narcotics b/c I hoard them. I rarely take them when I’m able to take my other meds, I only take say, 1 or 2 lorcet a week. so when I need it, I have it saved up sometimes from 9 months or so.
yes cymbalta is on patent they want 300.00 for my monthly rx this month. I think ill pass

Ayelet: Napping. I guess I can do that after work. Or during this new unexpected leave of absence. Which hopefully won't last too much longer.

Esti: next level of pain relief involves enforced rest on heating pad (if I have one; someone just gave me one, thank G-d) and auto massage to afflicted areas.. mostly I get huge marbles >> golf balls in my neck.. and my joints swell up so I can’t wear jewelry and walk like a robot.
napping is wonderful pain relief. especially if you can be warm while you nap.

No wonder cats are so contented. Always napping in a patch of sunshine.

Esti: included in my enforced rest regime is mental occupation. if I can afford a book I really like (rarely nowadays) or, some detailed beading or jewelry making.. using seed beads, which requires much patience as my eyes aren’t working too great and I have tremors. however, I have nothing but time. this kind of focused concentration helps sort of hypnotize the pain away.

I need a hobby.

Ayelet: What is lorcet?

Esti: lorcet? you really don’t know?

Ayelet: I've heard of Percocet and Fiorecet and some other -cets but not lorcet.

Esti: lorcet.. It’s a codeine/tylenol3.. vicodin type thing. I get 650/10. I hear the next level of pain relief is morphine, which I hate and do NOT want. ever.

Ayelet: Vicodin. Uck. I had that once and it gave me a wicked hangover. Hydrocodone. Don't like it.
I had morphine after surgery and don't remember it doing much of anything.

Esti: at this level I have to include attitude. what makes me really happy is nature. so if I have gas money and esp friend or family, I will indulge in a hike or walk even if I have high pain levels. this causes much joy and ultimately makes my life worth living. without that nature, I think would wither from the inside out.

Ayelet: So warmth, naps, lorcet, mental occupation, and joy. Can I blog this convo?

Esti: yeah I don’t care if you blog this.. id love to share and help others. living with chronic pain is one huge ordeal.
there is more.. at some level.. pain is out of control.. that’s usually when you hear me whining on FB.. I throw the book at that kind of pain
I have soma, which I have weaned myself off of, but when the marbles turn into golf balls, I HAVE to use it...

Ayelet: Soma? As in “Brave New World”?

Esti: soma~~ muscle relaxant. morphine gives me headaches, weird visions and itch ... I hate the stuff.

Ayelet: soma wouldn't help me -- it's not muscle pain I'm dealing with

Esti: that’s kind of my triage for pain. I try not to abuse any one substance. mostly, I try to live in joy as much as possible.

Ayelet: I need more joy in my life. I need to meditate more.

Esti: yeah, I think you do too. wish you were closer, I could use another hiking partner. go to symphonies.. or whatever it takes. just take the moment and experience what is there.

Ayelet: Maybe a seed beading partner... I haven't gone hiking in forever, I can't imagine being able to.

Esti: I don’t go hiking without a partner b/c in the past, a leg or hip has given out on me and I have been stranded in some bizarre places. also, b/c of the asthma

Ayelet: Understandable. I just find walking to and from the train station a block away painful. I don’t' even want to take out the garbage.

Esti: I go through times where getting to the bathroom hurts so bad I cry... my house gets horribly dirty. people say my kids should help more but I feel that they go to school 10 or more hours a day and learn torah and I don’t expect them to help when I’m normal , so putting the burden on them when I’m not normal is really hard for them. they are already scared when I’m not moving and they have to make food for me or whatever. sometimes I ask community members for some help, like with shopping. with the nerve pain, of course, none of the above helps. you just call the Dr. and wait for relief.
again, rest!! the best medicine. and your body can only heal itself when you are in REM sleep~~ so it seems like G-d set it up that way. the thing is, when you are a type A, like I was, with 3 jobs and a family or whatever~~ the burden of guilt is what holds you back. you feel so guilty for even beading~~ you feel guilty for not being at work, for your nap, for your meds, for walking funny and making people ask you what’s wrong.... the guilt has got to go! but that takes time, and is a process... and a big solution to that, is finding joy~~

Ayelet: People stare at my cane chair and leg braces all the time.

Esti: with pain, you discover that you are not, actually, your job. you’re not an RN, you’re not a MOM, you’re not a therapist... you are a person. and that person has value besides the dollar amount you bring in. a huge part of that value is what you are able to give to the world. I mean, how you are able to touch other souls. and that has nothing to do with work, even though your job may include that~~ the process of sharing and caring is a fundamental part of who you are. that is the path to non guilt. find your real value.

Ayelet: I needed to hear that. Because most of the time I feel like a complete failure.

Esti: I hated that wheelchair so bad Ayelet... omg.. I hated the idea of being a victim of sympathy~~ of being judged b/c I COULD get out of it, if I could stand the pain.. it was all a head job I was doing to myself.

Ayelet: I just want to be able to do my job. I might just keep it at work.

Esti: its part of the process of grieving for the person you were before the chronic pain started. it has taken me more than 10 years to get to this point of having a concrete plan of pain management, to release the guilt and fear of community judgment.. and to resolve to live with joy.

Ayelet: Then I feel better about not mastering it quite yet

Esti: you go through denial.. anger, feeling sorry for yourself.. and eventually, you come to acceptance. with that, comes a new identity. and you find that new identity has a lot in common with the rest of the world! being bipolar has to complicate the whole process I would imagine. you feel things triple what I do and I've always been very sensitive.
so you have to honor and cherish yourself while disciplining yourself at the same time.

Ayelet: Thank you so much for sharing all this with me.

Meanwhile, Gloria Chang was checking in with me.

Gloria Chang: hello, how are you? are you in a lot of pain?

Ayelet: I would say about 7.2 on the pain scale. If 10 is being burned at the stake, and the pain scale is like the Richter scale, where every decimal point represents an increase by a factor of 10.

GC: That is horrible. (I am sorry for asking you such an ignorant question.) I want you to know that I'm your friend, I'm here for you, and I'm not afraid of your pain.

Ayelet: It's not ignorant. You're asking because you care. I'm trying to quantify my pain because sometimes I feel like I just don't want to go to work. Because I'm sick of my job. But I've been sick of my job before, and I always went to work then, so the theory's a little thin.
I am very bad at asking for help. So I really appreciate when my friends reach out. It really helps.

GC: I'm glad to hear that it helps. I love you so much.

Ayelet: I know. I can feel it

GC: You really are a wonderful person. You're just going through some tough stuff.

Ayelet: I always am, though, and I have to really start examining my own contribution.
Sometimes I think I'm living in Margaritaville, blaming everyone else for my screwed up life.

GC: Do you think that you are contributing to it?

Ayelet: I definitely made a lot of mistakes in the past that are coming home to roost. Chased off a lot of men that just wanted to love me because I thought they weren't good enough.
Well, maybe not a lot of men, but several.
And I'm impulsive and hasty and impatient, and that never helps.
How are you doing? I'm sick of thinking about myself. Are you singing with that choir?

GC: No. They wanted me to sell tickets and I am horrible at that!!!

Ayelet: Oh, I *TOTALLY* get that. What a shame. Your church doesn't have a choir?
Maybe you should go to one of those African-American Baptist Methodist Episcopal amalgamated churches.
And then maybe you can explain the difference between Methodist and Episcopalian, because to me, honestly, you Christians all look the same.


Ayelet: You would be so awesome in one of those choirs.

GC: I am not sure what is going on here, but I think GD just spoke through you

Ayelet: Well, that would be a first.
I bet your son would like AME better than regular E

GC: I know he would.
I say that GD spoke through you because my mom and aunt are convinced I need to switch churches, and my husband said I should go to church in Bridgeport

Ayelet: Is Bridgeport a largely African-American community?

GC: Uh-huh.

Ayelet: Well, I guess I'm preachin' to the choir. You need to get a really awesome hat. Then you'll totally fit in.

GC: I'm working on that too! For Easter! There's this place in the Garment District I want to visit

Ayelet: Honey, you need more than just the one hat. Can I blog this conversation? It's kind of awesome.

GC: Of course!
You see. You see! You bring other people so much joy.

Ayelet: I guess that's my runner-up prize.

GC: I don't know what to say... I wish I could make him appear

Ayelet: I know you do. Keep talking, maybe Gd will talk through you and I'll get a brainstorm.

GC: The other thing that occurs to me is this: Christians are not supposed to be superstitious, but the fact is that I think the evil eye has some power.

Ayelet: I agree. But I don't know how to take it off.

GC: Is there a possibility that you could have been exposed to it?

Ayelet: Of course. I can be very irritating to people, or they could easily be jealous of my superficial attributes.

GC: I understand---though I don't experience you as irritating.

Ayelet: My friends almost never do. My sister almost always does

GC: That hurts.

Ayelet: Yes, it does. It hurts the children most of all, because it's harder for me to see them. But she can't be bothered to be nice to me, and I can't deal with the emotional abuse anymore.

GC: I understand. It's horribly painful.

Ayelet: It really is. It was so embarrassing to be the only person her friends didn't recognize at her daughter's bat mitzvah. You could see them wondering, "Why haven't I seen you on Facebook?"

GC: I mean, I have my own beliefs about what to do when exposed to the evil eye. I wonder whether it might help you to get in touch with a fellow Jew who really knows!

Ayelet: What do you do? I could post a question on FB...

GC: That could well result in a good conversation. It could also be very dangerous for you or others.
Sometimes I put on a red shirt and that helps

Ayelet: I'm wearing a red shirt today. I actually wear red a lot

GC: That's great.

Ayelet: I thought it was just because I look good in it...

GC: My experience has been that it can work really well.

Ayelet: I have to say, it's not helping me that much.

GC: That is why I say you may want to consult with someone who can speak to how to deal with this Jewishly.

Ayelet: I understand. I have a friend who might know. I'll ask her.

GC: In the meantime, please know that I love you very much. I know I said it before but I just wanted to be sure you knew

Ayelet: Thank you. I love you too. When are you coming to NYC again?

GC: For the opera later this month!

Ayelet: Can we meet before or after, playing it by ear? so to speak

GC: Sure! We can consult as the day gets closer.

Ayelet: Sounds awesome

GC: Yes!! Hope your day gets better.

Ayelet: Thanks. Yours started with homemade beignets, so I'm not sure how much better it can get -- but I'm sure you'll think of something.

GC: they kind of sucked actually

Ayelet: Really? Take those out of the cookbook.

GC: Hee hee!

Gloria has many talents. In addition to singing like an opera diva and embroidering better than a medieval tapestriste, she is writing a spiritual cookbook. The beignets were a N'Awlins recipe for Mardi Gras.

Ayelet: There I go spreading joy again....

GC: Don't be hard on yourself!!

Ayelet: Believe me, most of the time I feel like a complete failure.

GC: I worry about you.

Ayelet: Well, today I decided that if my MRIs don't rate surgery or disability proof, I can ask for a wheelchair instead of killing myself.

GC: I am not afraid of your pain. You can tell me more if you would like.

Ayelet: Well, I'm having another convo with another friend that I'm also going to blog. She lives with chronic pain and was sharing her strategies with me. Warmth and naps are two of them. So after I finish lunch, I'm going to take a nap under my comforter and wool blanket, and then blog your convo and hers.

GC: Stories are so important.

Ayelet: And I need to feel like a writer again.

GC: Darling, you are a writer.

Ayelet: I'm a much better writer when I'm not depressed. It's so much harder now in the winter.

GC: I understand.

Ayelet: I know you do. I'm going to take a nap. Thank you for reaching out, it really comforts me.

GC: Any time. Remember that you are loved.

Ayelet: I know. I should make a list of all the people who love me and put it on my wall. For when I feel alone.

GC: Don't forget to put Gd on the list. I know, in Jewish theology Gd is not a person but I think He belongs on that list

Ayelet: If He loves me, this is a heckuva way to show it.

GC: Do you think that one's level of pain is any indication of how much Gd loves one?

Ayelet: No, that is a distinctly Christian belief


Ayelet: We believe that you can't tell by your success or failure in this life how loved or sinful you are.

GC: So? If you believe that, why do you think Gd doesn't love you?

Ayelet: That is an excellent counterargument. I guess because 1) I have an external locus of control and 2) I take things much too personally.

GC: What does an external locus of control mean?

Ayelet: Means you think things happen to you rather than that you make things happen. You're not in control of your own life, it's everyone else's fault/responsibility

GC: now I'm really confused, and also afraid I could be impinging on your naptime

When in doubt, Wikipedia.  

Ayelet: http://en.wikipedia.org/wiki/Locus_of_control
that's a start; let me nap and we'll talk more soon

Tomorrow I see Dr. Dashing and learn whether my pain is visible on the MRI. And the day after... I have a job interview. If I can stand it. Wish me luck.
Copyright (c) "Ayelet Survivor"

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