Wednesday, November 14, 2012

Rabbis, glands, and Marshmallow.

Medicine for the nerve pain still working well! No nausea because I take it with the Pramine. Yeah! Check one long-term hardship off the list!

It's just that now...
Well, ...I am going through a sad time.
I cried tonight when I said to Robert (in a whisper almost, at bedtime) that I wish I never got sick. So tired, and I have to do a series of rituals before bedtime: medicines, then to wait to drink a drink that takes 3 minutes to dissolve, switch the Fentanyl patches, (this process can also be called: "Peglax, patches, and pills, oh my!), lymphatic draining once every two weeks or so, or when the lymph damage in my groin gets too swollen/painful. How I would love to just plop into bed when I'm tired. I wait for the sleeping pill (half if I am sleepy already) to put me out. On a rare occasion I can doze off without it, but usually I can only lightly rest without the pill.

Today for some reason I have painful swollen glands.

Even with that, I had to go to parent/teacher conferences (Robert was at work, kids home with our nanny). It took nearly three hours to talk to all the teachers and Rabbanim ('Rabbis') of all the subjects for the two older boys, both in the same junior high (7th & 8th grades). Six teachers all together, signing my name on the sign-up sheets, and waiting... waiting. Meanwhile seeing many of the mothers I have known through these years with our kids in the same classes, and conversing with them when I really just wanted to sit quietly. They all came up to me, and I didn't feel assertive enough to say "I don't feel like talking right now". It was exhausting, and I wanted to talk quietly because of my glands/throat/ears, but I had to be assertive and 'together', at least with the teachers, to try so hard to understand everything the teachers were telling me about my kids, in Hebrew, of course. I had to speak well- didn't want to be the ditzy immigrant mother.

If the swollen glands thing doesn't go away, I already have a doctor's appointment- my GP- on Thursday in which I will bring it up. The sides of my jaw and neck and ear hurt. Left side less than the right. I feel little marbles for glands. Robert & I, without speaking the words, are worried. I have had one of the worst infectious diseases on the face of the earth. It goes without saying that every swollen gland makes our minds jump around and entertain things normal people don't have in their lexicon.

I am still going through this all. I know you know that, but it still catches me off guard when I cry about it, as if it was just yesterday.

If it were just the NF ("just"), and I could say I was done, that would be one thing.
But the PVNS- the second disease which occurs in one in a million people- and then the hip joint/thigh impingement on two sides, well, I am still in the mud.

And to top it off, our hamster, Marshmallow, is dying. She may not even live through the night. Ya'akov, who was her main man, who played with her the most, wore her in his shirt pocket, loved her with all his heart (tears welling up in *me* now), built houses out of Kapla blocks for her to play in- with tunnels and stuff- he is broken up by this. Marshy is stooped over, walking unevenly, falling over onto her side, has odd body protrusions, and I think she is blind. She sleeps all night now as well as day- hasn't gotten on her exercise wheel in months... her life expectancy is lived out, and Ya'akov wants her to live forever. I cried with him, we took pictures of him & Marsh-mush together, with Ya'akov's camera then mine, and I tried to teach him how to say goodbye.

Ya'akov and Marahmie, Nov 13th, 2012
Marshmie in his old friend's hands


Then I got a lump in my heart thinking about my mother being sick, and my father getting so frail. I went through the painful grief of Robert losing both his parents, four years apart from each other, and I just break apart thinking I will have to say goodbye to my parents, too some time. I CANNOT. They could still live out long lives, please Gd. I can't handle the thought of them leaving this world. I can barely even write it
. We had a rough relationship for so much of my life, we just reconciled a year and a half ago.

I want to go to NY to be with them *all the time*. I wish I could go once a month, at the least. But the reality is that I can't. It is so expensive, and my children need me here. It is even hard for me to have time and wherewithal to call every day like I want. I want to call, but it makes me so sad. Makes my mother sad, too, but it's all we have, so why can't I call more? I'm just. so. tired. The pain meds wipe me out tremendously.

Another blog I follow is written by a woman dealing with tragic loss (here). First her son passed away from congenital illness. Four months afterward, unexpectedly, her husband passed away. She has her three other sons to bring up alone. I read her blog all the time. Last time she wrote she said she is like a duck; under water the duck's feet are working like crazy just to stay afloat and moving, but what we see above is a sweet duck swimming gracefully along the quiet waters. I could relate to that.

Then I read a comment on her blog that I would also like to share with you:
People expect you to say " I'm ok....." [when they ask how you are].
Someone once told me that grief is like being set out on a raft in the ocean. Some days the sun shines and you lift your face towards it to feel the warmth. Some days it is really rough and you struggle just to hang on! Eventually you make it back to shore - but it is NEVER the same place that you started from.
I am still looking for shore. I know it won't be the same, I am not looking for the same 'me' as I was before I got sick; but a shore, *any* shore....

I am grateful, always, that I know in my heart of hearts that I am never alone.


  1. This was so heartfelt Sarah. You're a wonderful writer.

  2. I have been ranting and raving at Jay for much less. It is good you can get feelings off your chest. i think our feelings are what we can share and deal with. We have very little choice in other areas of or body which are influenced by genes and luck. I always thought I was in charge and I think that is the most frustrating thing when you never know what will happen next. Glad at least the pain is better.

  3. My arms are reaching out across to Be'er Sheva to give you warm gentle hugs. I love you sweetie. Read every word you wrote.