Monday, December 12, 2016

Too Much.

I haven't been able to write because of life getting really heavy and scary of late. Not with my health, but that of my friend Sabrina, who's daughter I often help to take care of. Sabrina is very, very sick, and her daughter (6 years old) needs taking care-of, full-time by someone else. We pray it's a temporary decline in Sabrina's health, but there is no way to know until you know. That "someone else" to take care of Tessa has been me. I have also been trying to take care of Sabrina and get her what she needs, she is living alone, and I am very worried about her. This all weighs very, very heavily on my heart, as well as  the hearts of my kids. It's been a helluva week.

My kids are going through a very hard time about it, too. Thank Gd they are very expressive and verbal, and I have raised them to speak whatever they need to say to me, no matter how they perceive it may make me feel.

They feel that because I have been sick so much in the past 9 years (practically speaking all of Azriel's memory, and most of Shifra's life), they don't get me for themselves as much as *they* need; taking on another child isn't OK with them. They told me (separately, in different words) that they never know when I will be sick or unable to take care of them, and they feel insecure in my consistency. Guess what? They are right. I know you are all nodding your heads.

In the meantime, neither Sabrina or Tessa has other family. We are their people. (not only my family, there is another very loving family also helping take care of Tessa). Sabrina needs help and she is presently living alone in her apartment. I will do what I can to help her get the help she needs.

But I am fraying at the edges emotionally. 

It's all been way too heavy for me, and I've been paying that price. There is a reason I am not working as a doula anymore. I don't have consistency and strength to give. I wish, more than anything in the entire world, that I DID.

In the meantime, my father and his aide are coming HERE on Wednesday from New York!!!!!!!!!!
They are staying for three weeks. It's very exciting!!!! I pray that his health and strength will hold up, and we can have some quality family time. I'm nervous about how he'll do on the flight, but thankfully his lovely aide, Nina, will be by his side the whole time. She was my mother's aide, and after mom passed away in late June, Nina decided to stay on and help my father. We are so grateful for her. So now I have to clean the two rooms downstairs that they will be sleeping in...

My CT scan was inconclusive for major problems in my hurting thigh joint. It pointed out a few lesser problems (liver cyst, ovarian cyst, structural deterioration in my hips and back bones at the bottom), but we didn't get a definitive answer about the thigh joint pain and occasional fever.

My doctor agreed with me that we should be looking at the diagnosis of endometriosis.

Endometriosis is very painful.

Although my symptoms point to it, is is clinically undiagnosable without laproscopic surgery, (which I plan to avoid). My doctor told me about a new endometriosis clinic in a hospital in Tel Aviv where I have an appointment to go to in January. They opened a whole wing of a hospital for it. Thankfully my health plan already OK'd payment for it, which was not a given, because I don't have a solid diagnosis in this case. My doctor (I'm talking about my GP here) told me they have ways of lasering the wayward endometrium, as well as other new techniques to help with the disease without operating. In my case there is a lot of scar tissue adhesions in the same area, so it may be complicated. As long as I am having this level of pain, and the fevers half the month. I need to try to get help. It seems like I always need to try to get help.

BTW, the endometriosis is connected to the NF like almost every health problem I have now. How? Well, the scar adhesions in there are mainly from NF, and endometriosis (uterine tissue growing abnormally outside the uterus) is attracted to scar adhesions. It hides under them. Also the appendicitis (may or may not be related to my immune system problems after NF), and another procedure I had to have years back because of the effects from the NF damage in my life. That procedure, in a very small percentage of women, can lead to endometriosis (we just found that out while searching the two words together... these are the things nobody tells you beforehand.) I would have never needed that particular surgery if the NF hadn't changed my life so drastically.

I keep hoping that I will be able to move on.

My health has been marked for a lifetime of problems. I now have fairly frequent chest pains, but my doctor says it doesn't seem cardiac. It doesn't make it hard for me to breathe, just, uncomfortable chest pain, like something heavy is on me. I, personally, think it's stress. I think I am so, so stressed out with what is going on with Sabrina and Tessa, and so worried, that I am taking it all inward. I have duly notified my doctor about it, and if it's still there in a few weeks (the chest pain) we'll do an x-ray.

I am definitely overwhelmed with life.
I'm not sleeping well. 
I am working to find balance.

On the bright side, my migraines are TONS better. I am on a new migraine medicine now for about six weeks, and haven't had a bad headache in about a month. I am supposed to take a bit higher dosage of the migraine medicine, but I am keeping it at a lower level for the time being, if it works, it's better for my liver and kidneys to keep to a lower dosage.

OK, I have to go. I have a deadline to meet in writing a story for a brand new magazine! It's a magazine for Jewish women who are dealing with chronic illness. Hmmmmm, we know anyone like that?

With my father coming on Wednesday, no telling when you'll hear from me again. But I'd love to hear from you! Leave me a message on the blog. Thank you! XOXOXO

taken last week at Dov's yeshiva in BatYam (near Tel Aviv)
Ya'akov couldn't join us, unfortunately.


  1. Glad your headaches are better. Maybe checking the hormones through saliva testing might help elucidate a need for progesterone cream. Gd bless all of you and your dad on his trip.

  2. I'm grateful your Dad can come. Yay! I wish you strength and courage to face all you have in your life right now. Hugs!

  3. I pray that you will regain some semblance of good health at some point, or better yet, a complete healing. You're very strong, but you deserve better than to battle daily with your body. Thanks for sharing your story.

  4. I believe we'll get together while your dad's here, but in the meantime I have a few ideas that might help, like specific accupuncture for scars, and various ways of not letting emotional stress burden your body.
    Stay well!