Friday, November 1, 2013

Please life, don't pass me by

After nine days of visiting my friend in the hospital, yesterday was the first day I took off. I felt OK about it. Her condition isn't great, but she is sort of stable, in a non-stable way. She is home now (but the woman who is taking care of her daughter is still taking care of her). She is supposed to go back for out-patient check-ups. It is slow going. I am still catching up with her many many times a day, and keeping my phone on for her 24/7, but I am still edgy that she is so fragile. You and I know that it is going to take a **long** time to heal from this large scale surgery. When she didn't answer three messages I sent her, the last one said that if she won't answer this one, I am coming to break her door down. I got panicky that she was not OK, first day waking up at home. She then wrote me back one word: "sleeping". OK.

I know the long path in front of her. I know it will take the good part of a year until she feels back to [mostly] normal. This surgery stuff, most people really don't understand what it means to recover. Especially for those of us (including my friend) who are "repeat customers" with numerous surgeries. I feel for her the long road in front of her. I feel it viscerally.

Me, I'm not doing too well myself. I feel lately that I am just a bundle of symptoms with no title.
I think I have mentioned that I have had diarrhea for a while now (3 or 4 times a day for about two months now?). That, coupled with stomach cramping and pretty quick weight loss is raising an eyebrow for me. I am also having extraordinary pain in Gapey. I spoke with my doctor today about it, and she is quite sure that the gapey pain is because of the intestinal over-working; it passes right through the train station of gapey, and aggravates it. Also weight loss or gain always hurts gapey. It is a mesh and a skin graft, with no fascia layers to protect it from the intestinal action. Gapey feels everything.

Low-grade fever, but that could be because I am so tired so often. I could be tired so often because I am having the diarrhea. The stool sample came out negative for parasites. That's good. 

I don't really like how my doctor sees a bunch of symptoms and handles each one individually. I guess most doctors do that. She said there is nothing to give me for the gas. I don't want another medicine, I was telling her about it because it is part of the picture. She put in for an appointment for me with the gastroenterologist. Oh Joy. That appointment won't be for a while, though- she said that the gastro takes a long time to get an appointment. Again, oh joy.

I may switch doctors. I don't really want to because this doctor knows me already for 5 years or so, and she knows the whole story. But I went to a talk a few weeks ago given by a doctor in my insurance group, and I was more impressed with his approach to medicine. Much more about treating the whole person. I may switch to him, but it is such a hassle to start with a new doctor.

Something has been bugging me for a long time now.

I don't know how to state these things without hurting specific people, because that is not my goal, by any means.
It's just that I sometimes get the attitude that I am harping on this way too long, or using people's offer's for help too much. As if when I do ask for help, I am not really needing it, I could get by if I really wanted to. Yes, I could get by. I also know that if I get to the point of asking for help, I am really bad off. I hate to ask for help. However, my reality is that if I don't ask for help, I will break. It has happened time and time again. It took me a long time to learn that just because my NF was how-ever many years ago (6, of course, but I am purposely not being precise because there is no precision to recovery), I am not the same Sarah. My friend says that she always pictures me going about my days, doing errands, busy with kids, yadda yadda, but every time she goes into my blog she is shocked to read how things have really been going.

I take a heavy dose of Morphine-like drugs each and every day for debilitating chronic pain. That, you cannot see on my face or my public mannerisms. I keep up a good public appearance. It's just who I am.

I have two careers which I love, and cannot return to either. Would it be that way if I was fine? Do you know how much I miss playing in orchestras? I can't even take my horn out of the closet in order to keep it in working condition, it hurts my heart so much. I can't imagine touching it and longing so much. I should oil all the valves and other mechanisms, but I can't even bring myself to take it out of the closet. That makes me cry. Would it be that way if everything was OK? I can't play because I have bad pain, need too much sleep to keep up with an orchestra schedule, and cannot be consistently healthy to be reliable to show up every day.

I also want that Sarah back who does errands all the time and runs around with kids all the time (which I do do, thank Gd, but there are those times that I *really can't*). But you know what? That Sarah would be helping women deliver babies often, and she wouldn't cry at the thought of not playing horn anymore. (I don't mean playing in my room just for fun, it is not fun for me to do that, many people have asked me).

What am I getting at? I feel like some people don't feel I have the "right" to still be talking about the hard things. Why should I care about what others think? Well, it hurts, I guess.

Even the content of my blog has been criticized. I once told someone, while they were criticizing my blog, that it gets many, many hits a day. He said that there are "bots"- electronic search programs- that go to sites and they raise the site counter, but only stay on the site for a second. Why say this? It is so hurtful. It is hard for me to let go of this hurt.

I recently started reading a blog by a medical doctor, who has side stepped (but not gone away from) conventional medicine, closer to the truth of the body's power to heal itself.

While I've been feeling this way recently about the "get on with it already" attitude from people I am close to, I am realizing I am getting quite upset about it. Many people could not possibly understand what it is like to have to ask for help, over and over again. To be dealing with nuclear fallout from a disease which is gone but left destruction in it's wake.

Here is an excerpt from this woman's blog. Her name is Lissa Rankin. It completely resonated with me, exactly getting to the point of all I have been trying to say here. You can hear in my writing today that I am... angry. Angry at those who feel I should be "over it already". Angy at.... many people these days. I have to let go. Anger can make a person sick if they don't let go.
May you find the angry part of you, the part that feels violated and betrayed, the part that should have been nurtured, but instead was harmed, the part that is making others wrong, the part that is frustrated because you know the truth and nobody else is listening to you, the part that just can’t stand the discomfort of being with the truth when others don’t yet have it . Offer that part of you comfort, loving care, and compassion. Promise to take care of that part of you. Make a commitment to always listen to this angry part. Promise to never sell out that part of you. Never. Ever. Reassure the angry part. Mother the angry part. Soothe the angry part.

Written by Lissa Rankin, MD
This is the entire blog entry which this quote came from.

I desperately want to be at peace. I feel the days ticking by.
I don't want to be the one with anger and resentments, it's so useless.
Please life, don't pass me by. Give me a chance to live in peace.
While I have your attention, Life, please give everyone that same chance.

25 comments :

  1. Hear you loud and clear.

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    1. Tamar, you have always been supportive and caring. I will always remember your chessed (caring deeds) for me/us at the worst times.

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  2. First time I've been to your site, and you are the first person whom I have met who has actually suffered from NF. So to introduce myself, I am kind of a nut about the effects diet has on our condition, and about the Landmark Forum, two completely unconnected things, both of which could make a difference in your, and most people's, lives.

    But I have just realized its a really small world and we've already met. You were gracious enough to host me and take me around when I was on a pilot trip in Israel in September of 2003. I have not thanked you. Thank you. You made me feel welcome and at home and enrolled me in the beauty of the Negev, though I ended up settling in the north.

    Like I said, I am nuts about diet. You mentioned gas; that's a function of the digestion of vegetable matter by the bacteria in your gut. Cut out all sugars and vegetable matter, and there's no gas. This however requires a diet much higher in fat, which can be consumed with moderate amounts of protein. I would suggest that our bodies tend to be optimized for such a diet, but we've also adapted to be able to use many alternate sources of energy. It's a great adaptation for the survival of a species, but not always for our own health. If a person would stick to such a diet, it also changes the metabolism, to something that I would argue stresses a body less. I'd check out Drs. Robert Lustig and Peter Attia for an interesting entry into issues of diet. But I get it's only one factor of many possible.

    Another is who we "be" in a situation, and for that I love Landmark. It's purpose is to empower and enable people in fulfilling those matters that are of interest and importance to them, and in the process leave them transformed with more power, freedom, self-expression, and peace of mind. I took the Landmark Forum in 1995, and it continues to have a profound effect on my life on a daily basis.

    I wish I could take away some of the anger and the pain and the frustration, and provide a space in which people could really get what you have to deal with. I don't know how I can at the moment, but I can tell you I hear you and feel for you. I can also suggest that you can affect how you relate to the things around, to relate to them with more freedom and power, to not be so hurt by the words of others, and that Landmark can provide.

    Anyway, thanks for who you are, for sharing your world, and for your commitment to humanity.

    Shabbat Shalom,

    David R. Herz

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    1. David, how cool that you stumbled upon my blog, and realized that you have been here before... a long time ago! Glad I could help you. :)
      About the dietary issues, I have done many things regarding this. I have turned things totally around since I went on a raw-food retreat this past summer. I am mostly going for vegan at the moment, but I am not staunch about it. As far as sugar, I have vastly cut down, but do partake occasionally, especially when the going gets rough.
      I haven't checked out this Forum you wrote about. I am usually wary of these sorts of things; any group that claims that if you follow these life changes and stick with it always, you will have all your ducks lined up and life will be solved. I know I am over-simplifying things. I will check it out and at least learn what they are about.
      Thank you for introducing yourself!

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  3. Feeling your pain. Only you can know what you're experiencing, and there is no set schedule for "getting over it." Trust your intuition, trust yourself.

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    1. "like". Thanks Debbie, you're a doll. Lots of love to you!

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  4. And it's good that you did. While you may think it isn't "nice" or "kind" to write about how you feel, it is better to get it out rather than keep it in and let it fester. There are people you love you and understand.

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    1. right back atcha, Claud! Those kisses and hugs reach deep... our 43 years of life together. Love you soooooo much!!!

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  6. I am not a bot. I think you are a compassionate writer.

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    1. Thanks for stepping up to say to the world that in no way are you a bot. :-)
      No, really, it warmed me to read that phrase. None of you people are bots, and the other 200-300 people a day are also not bots. The truth is that my blog counter shows how long one stays on a page, on average. The average is 5 minutes, with some addresses repeating. I know these are not bots. The person who said that to me, for whatever reason, is one of the people who thinks I should "move on" already and write about other things.
      Anyway, thanks, Judy. Your comment made me appreciate my readers more. (If there could be more!)

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  7. Sarah, keep writing about how you feel and what you're going through. Much love from all of us.

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  8. Shabbat shalom. Rest. Relax. Don't pressure yourself.

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  9. I wish I could be there more for you, but know that I don't think you should "get over" something that isn't over by any stretch of the imagination. I do hope you can forgive those who are critical, because it can only harm you not to, and won't matter to them. Know who your friends and allies are, and ignore the rest. I love you , Shabbat Shalom, Bracha

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    1. love you, too, Bracha. It is so hard to let the negativity roll off, but after writing this and saying it publicly, it helped. Aren't blogs grand?

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  10. Sarah who are these negative dummies? Just know that to some of us you are a hero. I can't imagine how you pull yourself up and do all that you do considering what you have on your plate. My medical problems are minor in comparison and I know that even small chronic problems can make waking up in the morning and getting things done a daunting task! People have also said that the more "successful" or "busy" you were the harder the fall as it is a bigger change. So be proud of your past accomplishments even though they make us frustrated at not being able to continue them. I am most upset that my kids think i am a wimp...but keeping up an almost fulltime teaching job is about all I manage. I am rooting for you from afar...don't listen to people who can't empathize.

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    1. Tzippy, you are right there with the frustrations of not being able to play horn like you want, because your physical state of unwell is getting in the way. It feels so lousy.
      Do you really think your kids think you are a wimp? These are your kids, give them more credit. You support them through thick and thin, and they feel their mother's love clearly and strong(ly?) The pictures you have with your soldiers and your lovely daughter show their love for you. They also show how tall they are in comparison, ;)
      Complete recovery for you, too, especially with this new issue. Don't you hate the word "chronic".

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  11. This is an official honoring and mothering call for your anger and you! I respect and honor your feelings and dramatically disgard all critics and criticism for you. Everyday we change but no change you could have ever imagined come close to those that have taken place in your life since having to deal with NF and all the other ailments that came along with it. As someone already wrote, you are a hero and an inspiration to many but that's not what it's about. You are the sum total of all your emotions and no one has the right to delegitimize any one of your feelings. So go ahead which ain't so easy, trust your gut even tho it's giving you gas, and feel what you feel. say what you say and try like any other woman who's grown up in the past century not to let others make you feel bad or guilty or hurt. Would you really want to be someone else? (I'm not talking about getting some parts of your physical body switched so they don't give you so lmuch grief and pain). Love you and if you want send some of those people who remain nameless in my direction so I can beat them up. I can't spare any pieces of my mind. Have a shabbat shalom one with some peace for your body and soul.

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    1. Judy, as usual, when I hear from you regarding these issues, you give me so much strength. Thank you with all my heart! When you say "by other women who have grown up in this century not to let others make you feel bad or guilty or hurt". That encompasses many women, for whatever reason, who aren't bringing in an outside salary for the family. That issue is a sore spot for moms who don't work, that is for sure. I'm not sure if that is exactly my issue, most people understand why I am not working. It's a little different, but that comparison can work, too, if you see the attitude I feel from [some] others is the "get on with it" attitude. Not that I need to get back to work (although there is someone who thinks I can totally get back to work at this point and doesn't understand totally why I know it isn't feasible.)

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  12. Dearest Sarah, thank you for sharing the blog that you went into and quoted from. I went into the blog and appreciated the love and kindness it wishes to share. I have to say that I am a "bot" but with a "B" as that was my mother's maiden name. I don't know why they use that term for "an electronic search program" and wish they didn't. In any case, that man is obviously quite ignorant and needs some work on improving empathy and consideration as well as thinking before speaking. Last night I was dong my daily learning of Pirkei Avot with commentary and learning about the pasuk which teaches that one who is pleasing to others is pleasing to Hashem. Rabii Lau mentions that it doesn't state "pleasing to all others" because one can never please everyone. It is a fact of life that people will misjudge others, especially if they are not working on judging others favourably. I have gone through periods where this has bothered me. Since the summer I have been working on caring less about what others think about me and more about my dveikus with Hashem. People just don't know the full picture, even those who read your blog don't know the full picture. It is frustrating when people misjudge or are insensitive and it's natural to get angry. It's good to have others to share with and no one should tell another not to share, relieve the burden, the pain. There will always be people who do, though. They just don't understand, don't know the full picture, don't have awareness. You, dear Sarah, are pleasing in the eyes of others.

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    1. Darlene, this is beautiful, like everything you write to me. Thank you for sharing your learning which Rabbi Lau commented on. It really resonated with me. Thank you so much, dear friend!

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  13. Sarah, anyone who's read your blog or knows you personally realizes that you're in a far, far better place than you were 6,5, 4, 3, 2 or even 1 year ago. You're a busy mother, occasional doula, full-time loving spouse. You help other people (like your ill friend). You're dealing with TODAY's issues, today's pain management, today's limitations. How could you not? No one who isn't in constant pain knows what you're dealing with and how well you're coping. I'm pretty sure that few of us would cope as well as you do, despite it all.

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    1. thanks, Michelle, for the words of support. Of course, the obvious problem is that I don't *believe* that other's couldn't cope like I am... this happens to be a day I feel awful and in bed. Ehen I get days like this, I feel others could ro sure cope better, but that is just like an internal bully saying that to me.
      Thanks.

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  14. So I had noticed a blog entry came in, but I was so busy preparing the house for sale, etc., etc. (my own grief I'm dealing with), that I kept thinking, I'll read it later. Then I saw a second one came in, so before I read that, I went back to this one to keep them in order (I do read them all in order, even if I don't respond). And now I feel TERRIBLE that I didn't read right away and respond. I want you to know that no matter what anyone else says or does, I want to support you and cheer you on, and listen when all you can do is moan. I know I can't help from the U.S.A., not really, but I can listen and I do (even delayed by a week). No one is required to read your blog, and if they don't like what you say, then they can stop reading. So too bad for them, and you keep writing whatever you need to write.

    I love your more recent post, where you talk about the gift of time with your children. That is precious and I'm so glad you have that. Even with other losses in your life and constant struggles. You are not only a musician and doula. You are a MOTHER and WIFE. What a wonderful calling those two things are.

    Hugs from Pennsylvania,
    Jackie

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