Directly from me

Dear All,

Robert so kindly posted in my place the past couple of times. Its very hard for me to type for me now, because my vision is so impaired and my motor skills are really bad now. I am constantly hitting the wrong keys and have to correct every word. I used to be a very fast typer. Argh. Anyhow, I didn’t want Robert to let you know that I am not well. That just sounds weird. In fact, I am doing terribly :)!!

Not being able to walk, see or communicate is more than even I can take. I also just tired all day long. So my work window is very small, and everything is happening very sloooooowly.

Taking a bath or shower + getting dressed is a one hour procedure. And after that I am so tired. I have to lay down again. Its ridicules. Anyhow, I am using this walker now inside the apartment, so I can at least make it safely from the couch to the kitchen. I fell 4 times before and had to learn the hard way I guess.

The likely surgery on Tuesday, stresses me out to no end, because I am under deadlines and can’t always let people down. Its a small procedure, so the surgery itself is really no big deal. I have an amazing team working with me now, but I have to do my part so that they can do theirs. Its very simple.

And stress is of course the worst I can do, but I have always been good at that part, ugh. But it really has to stop, its the antidote to healing as we all know.

The treatment might be working, we don’t know, its just so far it hasn’t made me feel any better, but that can have lots of reasons. The fact that I can’t sleep for example.

Lets see, we won’t know for another few weeks. The hospitals are still completely post-storm messed up. And my surgery will take place at a different hospital since mine won’t re-open until December.

What else. Yeah, couple of corrections to Robert’s post. I think he meant to say “home care” not “health care” were impossible to do through my health insurance.

I have private homecare person now, she is great and luckily paid more than minimum wage. (still far too little in my mind, but I couldn’t really afford more anyhow).

I also have a physical therapist coming to the house, and he is paid by my insurance. He is great, and its helping too! Today I walked almost 3 blocks, with the walker, Robert and Lucinha.

Robert is not doing well either btw. Having to do everything is just too much. I am hoping that Elise, the homecare person, will help make things easier over time. But he has to return to California (to teach) anyhow soon, so he will be relieved of duty then, if not before. Who knows, I might actually get better. It seems like such a distant possibility right now, but perception can be confusing.

Ok, my hands are cramping, and I have been wordy enough already, I just took the steroids, and I guess they made me hyper. They also gave me swollen pumkin face, and I am just not looking into mirrors anymore. I look terrible. Sick, pale and swollen.

Its 1am here now. Time to stop.

More, less wordy soon.


5 thoughts on “Directly from me

  1. Love, wishing I was there to help, I’m trained as a home care attendant because I took care of my sister for years. I remember when I was getting chemo I was so weak and tired and needed so much help and at the same time I didn’t want to burden anyone, but I had to put away those thoughts and accept that people wanted to help. Now that it is thirteen years later and I am here, I am so glad I did.

    I wish I lived in NYC, I would so much be there, but alas, I live a very complicated life in California. Mainly I am stuck here because I am teaching at UC Davis, so I can’t leave when I want.

    I have survived two life threatening illnesses, and I speak to you from experience, sometimes it gets worse before it gets better. Sounds like you are in a tough spot, and I am so happy you have a home care attendant and a physical therapist and are getting support. Darling, do you need us to fund raise for you for these expenses?

    I love you Shani, and if there’s anything I can do from California, do let me know. I think about you all the time, with love and support. xoxooxoxxoxoxoxox, Praba

  2. Honestly, you can’t be too wordy for me. You are our lifeline to you! It’s hard to hear how tough things are for you right now, but it’s so much worse to hear nothing. Thank you for posting for all of us. We miss you out here on the left coast!

  3. Hi Shani,
    I am so sorry to read this. And sadly I had not seen the last three posts.
    Things sound like they have been so hard for you and Robert too.
    I am glad you have some home care now. And happy the effects of Sandy have past. And I hope the hospital procedure will go smoothly. It must be so overwhelming having the power outage, losing your ability to see, not sleeping, etc. How to relieve your stress? That is of the most concern. I wish I were in NYC. I miss you. And send you loads of love, Kathy

  4. Liebe Shani,
    es ist schön direkt von Dir zu hören. Beruhigend ist sicherlich das falsche Wort aber ich habe mich gefreut und einen Funken Humor herausgehört. Ich denke viel an Dich und im gleichen Moment an Robbert, der ein unglaublicher Mensch ist. Die Nachrichten über Sandy waren beklemmend. Ich hoffe es gibt Momente, in denen Ihr nicht nur funktionieren müsst und die Alltagsbewältigung etwas in den Hintergrund tritt.
    Liebe Grüße Marten

  5. Dear Beatriz, thanks for sharing all this, – you are on my mind a lot, and as your friend said, even so it’s hard to read when things go worse again – especially with an ocean between us – , it’s worse to hear not at all from you.
    Speaking of the ocean – I am trying to come to the States in summer. With both kids, hence a bit of a logistic task ;) … in any case, i am looking forward to spending time with you, and would love to be around for cooking and whatever you will need, for some time.
    For now, many more hugs by internet, you are doing so amazing, wishing you all the strenght you need! xxx Manu

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