Sunday, September 18, 2016

Pain. It'll never end, it's just never going to end.

I find myself needing to *remember* to smile, to purposely uplift the gloom settling around me. Because, I am One Gloomy Me.

I have three friends battling cancer at the moment. Three. That number went up 150% in a few short weeks. I have one friend watching her mother deteriorate from Alzheimer's.

Disease is just one of the suckiest things on the entire planet.

I also just watched my mom deteriorate  and eventually pass away over the course of five years, bedridden. Lots of diseases in her past, not important to document them here.

I almost cannot bear it anymore, the disease, the illnesses, the lives changed forever because of disease. Once a person gets a diagnosis, their entire life's plans change course. Forever.

39 years old. That's how old I was when my dreams came to a screeching halt. Today, resentment is bubbling up to the surface. Resentment is really sadness in disguise.

I heard some beautiful horn playing on YouTube yesterday.... I want to play like that. I *can* play like that, if it weren't for disease. I hear those recordings, and I think to myself "tomorrow, yeah tomorrow, I'm going to pick up my horn and play again". Then disease strikes, and I don't do it. (lump in throat, tears welling) I miss it so much it makes my heart literally hurt. It hurts to listen to music.

In the meantime, thank Gd my kids are off to a good start to the school year. Ya'akov is in his third new school, let's pray this one understands him better. Everyone has their "thing", and they all seem to be adjusting.

Me... not so much.

Remember that surgery that I have been pretty quiet about because it was successful, almost a year ago? The one that fixed my right thigh joint? Well, it's hurting more and more, over the past month or so. It doesn't hurt as much as it did before the surgery last October, but the pain is gradually creeping back. I am still in the process of going off Lamictal, and my experience is that every time I go off a medicine my assorted problem areas flare up. But, the difference here is that Lamictal is not a pain medicine. That doesn't mean it's not effecting my pain, but only time will tell. I am currently on a dosage of 25mg a day, down from 150mg.
I just have a feeling that I'm going to need a hip replacement before that 5-10 year timeline my orthopedist gave me. Sometimes the idea of needing another surgery can put me into such a depression, such depth of despair, it is scary. But the pain... it's ramping up. I used to be able to bend (since I healed from the surgery), and now it's getting harder, more painful. I will not go on pain meds, my body can't take anymore. My soul can't, either. Can't take anymore surgery, pain meds, migraines, all of it.

I'm pissed at life, at Gd, at cancer, at medicines, at the cruelty randomness of disease.

(in my more spiritually grounded days, I would not be angry at Gd, and I would not use the word random. But, here we are. Ride this out with me, will ya?)

There are so many people who say "well, yes, if you do this and this, you will be much better! Or, if you have this or this attitude, you'll see everything around you change! Or, go to **this** special amazing doctor, he cures everyone, you must go to him/her". Or "I can recommend a diet that would help. Do you drink enough? Do you have good sleep habits? You need to go out to work, it'll get you out of the house and your prospective will change." and on and on and on and on.....

I've heard them all. ALL. Many times over. Well-meaning people, healthy people.
People who struggle with chronic illness don't say those things, because we know that there is no magic to getting your life back.

But it's not coming back. This is it. I can look forward to more pain, more surgeries, more migraines.

And my friends with cancer, I can't even go there. I just cry. I scream, also. And I help as much as I can.

I want to go do some "bucket list" things, because life is Too DAMN Short.
Not this year, though, I am in the mourning year for my mom. It's been two months now... Now I only think about her a few hundred times a day instead of 1000.

I'm constantly on the verge of tears.
Loosing my mom, having our house robbed (every day I am missing the things that were stolen), awful effects of weaning from medicines, hospitals, horrific migraines, increasing pain which looks like it's leading to a hip replacement, less than a year from fixing it. Possible PVNS in my knee. Beloved friends suffering. I CAN'T. I just can't. Robert is busy up to his eyeballs with work... three teaching jobs and home editing. He works so hard, partially because I CAN'T. The kids are constantly a handful, I have no air to breathe. I give and give and give, as much as I possibly can, and my tank is emptying out. I need a quiet vacation with my husband, no kids. Probably not so likely in the near future. The "state of the union" is suffering. How could it not?

Gotta end this now, Azriel needs to get picked up. Then a full afternoon of cooking, chopping salads, cleaning up, laundry, driving to and from activities. Oh, and making Turkish coffee and providing cold water for the workers who are painting our house at the moment.

Thank Gd for all the GOOD. But I'm not doing so great.


  1. Maybe instead of a magic something that will fix it all, figure out what help would allow you to move forward. Someone to do the driving and/or vegetable prep? Maybe it's time to hire some help. I am sending love am hugs.

  2. I will not give you words love, or advice or recomendations... but do let me say that I love you and think of you often. <3

  3. Delegate, delegate, delegate. And know that your friends embrace you with unjudgmental, uconditional love (GOD does, too. YOu're not the first person to ramp up the criticisms S/He's heard before. Part of the Plan we don't understand).

  4. Sarah,I'll continue to keep you in my tefilot.

  5. Sare a few things that come to mind with this last post:

    1) ugh. ugh ugh ugh.
    2) what beautifully written thoughts
    3) what on earth is Sarah doing chopping specialty salads, driving all around, making special challot (previous post), doing all of these things that require a very strong and healthy mommy? When you can commune with your kids without the stress and exhaustion of all the household distractions, you will come to your conversations in a more peaceful and satisfying way. I agree with Miriam G: Delegate Delegate Delegate. It's not a failure on your part, it's a choice for quality of life.
    4) Refuah Shelaima, and you are in my prayers every day. I have to stop myself from saying your mom's name too... that's very difficult.
    5) what are your sick friends' hebrew names?
    6) Miss you, Sare! Sending you hugs.

    Dev from NJ

    1. Delegate to who, exactly? My kids have had nannys in and out of a revolving door pretty much since they can remember. The younger ones are almost 11, and 13... the older two are only home weekends (but need a lot when they are home). I am the mom, they need me. I don't have a chauffeur ready and waiting to cart my kids around. I don't have a chef ready and waiting to make food, and I don't have money for any of those things.
      Making challot for Shabbat is sometimes the only contribution I make to the Shabbat table, and it is uber important to me. My family deeply appreciates it.
      Life is what it is.
      I am strong, just not so healthy.

      My friend's names are:
      Shoshana Chaya Bat Basie
      Miriam Devorah bat Chana Rina
      Mary Margaret Schuck (non-Jewish)

      Thank you honey. Sorry if I'm a bit short on sweetness... it'll come back. I appreciate your input, and love you so much!!

  6. Dear Sarah, I have been reading your blog regularly and wish you well. I feel so sad for you that you have to experience such suffering. I also send condolences on the passing of your dear mother. Such a hard time you have all had.

    I send you best wishes for a peaceful and fulfilling day. Esther Goldstein

  7. Hugs and a broad shoulder.

  8. Sending a heart full of love and support and prayers to you, Sarah. G*d has already sent you so much courage and grace, but I pray that you get the support you need.

  9. Oh Sarah. I wish I could give you a hug and let you cry and scream with me.

  10. hugs and courage-you are always in my thoughts and prayers-lots of love

  11. I'm sad for you, Sarah. I do like the thought you posted, and hopefully tomorrow is a new day and a better one ! Sometimes I have to get my Scarlett O'Hara impression going - "After all, tomorrow is another day!" Every once in a while, it even helps.

  12. sending you soooo many hugs, to help you weather this one.