Thursday, April 27, 2017


So much good is happening. On the one hand I am starting to trust it, but on the other hand, just as that is happening, I get knocked down again with another infection. Why does that happen every time I start playing horn again?

A few months back I met a trombone player at a friend's daughter's batMitzvah Shabbat. Turns out his position on playing and stopping playing was very similar to mine. We had a lot in common. He works in Be'er Sheva every day, so we vaguely conspired to prepare a recital together, within a year or so. The idea sounded great to both of us, and in principle I am still looking forward to doing it.

So now I've been practicing almost every day, sounding better and better, finding my embouchure again, and the wobble-chin of no muscle support is slowly going away. I've been playing in the community orchestra I wrote about, and really loving that. I've been so happy about that.

Then it struck... yesterday I wound up in the hospital again. Remarkably it was on the day that is the anniversary of my hernia surgery which lead to NF. April 26th, 2007... ten years. What karma.

Two blogs back (here) I wrote about a few times that I nearly wound up in the hospital. Once was a cellulitis-like adventure that I underplayed and decided to stay home, and said it was better the next day. Well, that particular pain/fevery feeling is not new to me, it's happened a lot over the years. I just chalk it up to lymphedema and my general situation. Last time it happened, though, I did notice a definite red circle within all the swollen part. So, when it happened again yesterday, accompanied again with fever, I went to the doctor. She sent me to the ER. They gave it a name- it is an abscess of a certain gland. Who knew? I've had it for years, and I never specifically checked it out because it is usually better the next day. But now it seems that because it's visible, it's a bigger abscess. Not great. They said they could intervene surgically and remove it, or I could try to combat it with antibiotics. Yeah, that's a no-brainer for me. Lay those antibiotics on me. Yes, I have a lot of allergies, but I'll need antibiotics anyway, so, you're the doctor, find something. The idea of cutting (just that word makes me feel like the face of the guy in Edvard Munch's painting of "The Scream") into an abscess in an area (involved in the NF) where there is a compromised lymph system... REALLY? "I may be dumb, but I'm not stupid" (from one of my favorite movies "Forest Gump").

If the antibiotics don't work and this thing doesn't clear up, well, we'll cross that bridge when we get to it. Good news is that I am not allergic to them. That first dose is always a bit nerve-wracking, but thankfully it was uneventful. They make me really, really tired (because I wasn't really that tired before), and so far no change in the abscess, but I can wait. We have 7 days to make this baby reabsorb.

When I met that trombone player, I said to him that every time I pick up my horn to start playing again, I get sick or someone dies, and it makes me stop being able to play. Seriously. You know, in that matter-of-fact way I say things, those of you who know me, I said that. So he says "maybe you should try to boil your mouthpiece to sterilize it before you play, maybe you are getting germs from that". I thought to myself "awwww, isn't that cute... he thinks I'm talking about little germs and a cold. Maybe a little cold sore on my lip. Such sweet, innocent thinking". Then I told him a tiny, 20-second version of what germs I was dealing with and what I meant by getting sick... and what I meant by who died recently in my life. There may have been some longer-than-usual pauses in our small talk.

On the topic of getting back to my old self in a new way, recently I have also received *three* calls for doula work, and did one support visit for a post-partum woman after a c-section. Isn't that so interesting? I didn't accept the doula work, I gave them phone numbers of other doulas. But the post-partum visit I made was very rewarding. I think I helped her a lot, having been through a c-section myself.

That's also karma, if you ask me. I said above that on the ten year anniversary of my hernia surgery I was in the hospital with another infection and that was karma... well it seems to go both ways.

Life is black AND white. I'm rolling with it.
Orchestra rehearsal is in 15 minutes at the moment.... I'm sad to be missing it! 
But I'll be back. Please God.

Isn't this the *coolest*!? I wish it was mine... just a photo from the net.


  1. Sorry about you scaring off that trombone player. Maybe another will come along one day.

  2. RaeRae Kinsella ChippendaleApril 28, 2017 at 12:39 PM

    The fear never really goes away does it hun. My NF was 4 years ago-First operation was 29/3/2017- but every new skin infection makes my stomach churn with terror. Could it happen again? I sometimes think I'd rather die than go through that pain again- the year it took my wound to close, the feeling of being ripped out of the world into some science-fiction nightmare. I love your blog and am so glad I found it. Makes me feel so much less "alone" with this. M surrounded by beautiful loving family and friends, but only another NF survivor really 100% understands the experience. Much love and light, Rae X

  3. RaeRae Kinsella ChippendaleApril 28, 2017 at 12:40 PM

    Correction - 29/3/2013

  4. Sorry about the setback. But it is just that; a setback. Two steps forward, one step back. Three steps forward, one step back. You seem to only notice the backward steps. I'm sure there are people in your daily life who could help you notice the net gain you are experiencing.