Sunday, August 30, 2015

Strength in challenges, and challenging strength.

I've been spending lots of time in the hospital with my friend- the one who was in ICU for six weeks. She is now out of ICU, and getting stronger by the day. It is nothing short of a miracle. She almost died more than a few times, and now she is healing. She still has a long way to go, but she will get home, with help. I try to go to her every day, but it doesn't always happen. It's going to be a busy week.....

I am feeling so strong these days, I feel my own miracle. I haven't felt this strong since I had NF, I think. Being off the narcotic pain meds (after six years) has changed the quality of my life many-fold. I am stronger, and not as sleepy. My digestive system is awake and working properly, and that is such a gift, you probably can't imagine. I can handle the days better. Even the jet lag wasn't as severe this time.

It's the first time since I got sick that I am not on any pain medicines. Do I have stronger pain? YES. Can I work on myself to appreciate feeling strong while dealing with pain? So far, the answer is yes. I will not go back there, to narcotic-land. I've had a taste of freedom and I like it. I even have my new licence for cannabis, all I have to do is take a trip to Tel Aviv once, and thereafter they would deliver the stuff directly to my house. But, after the two week trip to the US which we just did, I decided not to pursue that route. I want to be off medicines, [almost] at any cost. I made it through difficult days traveling, and the entire vacation without pain relief. I don't want to be reliant on drugs. It's there, though, if I change my mind.

Now, what to do about the pain? It remains the most difficult aspect of my life. 24/7 I feel all different kinds of pain: from my right thigh problem, from Gapey (I still have trouble with the pins that are holding the mesh behind Gapey), nerve pain, left thigh joint pain, and recently dealing with a bad rash around Gapey as well. The rash is because I have to wear the pressure garment every day... it is for controlling the lymph-edema. Also since it has a pocket for the prosthetic pillow, I am more comfortable in my clothes with the pillow filling in the concave hole which is Gapey. But, it is awful in the summer. It is nylon. And tight. Makes me crazy, you can't even imagine. But if I try to do a day without it, the lymph-edema pain comes right back, and I wind up swollen. Problem is that the skin around Gapey is very sensitive, and a bit of sweat can cause a heat rash. This nylon is not absorbent. The rash does not go away with anti-fungal cream. It is soothed with tea-tree oil spray, and that is what I use for the time being, but that doesn't take it away, just calms down the inflammation/irritation. I put soft cotton around Gapey in the pressure garment; it's a whole procedure. It takes longer for me to get redressed and organized with the cotton and whatnot after using the bathroom. Oh well, compared to my friend in the hospital (who is going to have a MUCH bigger Gapey) what I am dealing with is small.

Having said that, I'll tell you about what is up for me this week.

I am doing an MRA test on Monday. It differs from an MRI in that contrast dye is injected directly into the artery of the joint, and I won't be able to walk for a while. It's very un-fun and last time I had it (two years ago) it left me in strong pain for a few days thereafter. The good news is that it is being done in the one private hospital right here in Be'er Sheva (*not* Soroka). The bad news is that neither the national health fund nor our private insurance will cover the cost. I have been trying for weeks to appeal and get them to cover it. It's an expensive test- over 5,500 shekels ($1,200 US). After discussing it at length with Robert, and considering the other options which the health fund *would* cover, we decided to go for this time-and-place on Monday in Be'er Sheva. There are only four hospitals in the country that do this particular test, and I have called them all and faxed all of them my referral. The closest dates they have are in January. That would mean, if I wait to get this test until January, I won't be able to do the surgery until afterward. That is a *long* time away. Remember, I am not on pain killers, and this is quite painful. The sooner I have this test to bring to my new orthopedist (also private, but my private health insurance will cover that surgery), the sooner I can do the surgery, heal, and please Gd eliminate that source of pain. Bilateral hip pain is the PITS.

The very next day, Tuesday, hoping I am in decent shape, I am supposed to go into Tel Aviv to Ichilov hospital for my follow-up for PVNS. I think I am the only person in the world (well, maybe not the whole world, but you know what I mean) who has two different doctors for two different legs. The left is orthopedic oncology, the right thigh joint is straight-forward orthopedics. How did life get this complex? Well, yeah, we know the answer. But I will reiterate, I am, at this point in my life, after having gone through the h*llish withdrawal from Fentanyl for 10 months, the strongest physically and emotionally I have been since I got sick 8 years ago. Thank the Good Lord.

So it's looking like surgery will be in the next month or so. It depends on the surgeon's schedule. I want to get it over with already. Remember, this is the surgery that I had to put off last summer when I turned into a tomato on the operating table seconds before I was put to sleep for the surgery. I upped the Fentanyl at that point because my orthopedist "fired" me for being too high risk. I needed to cope with the pain. Then I had the cellulitis hospitalization which happened after the allergy testing for antibiotics. That was a crazy time. I think this may be the first time in 8 years that a whole year has passed without me having an infection or hospitalization. Did I tell you yet how strong I have been feeling? :)

OK, gotta get to sleep. I have a teenager in angst about starting her new junior high tomorrow. Had a long heart-to-heart with her and she went to sleep feeling good and confident. I love that. I love that I am a stay-at-home mom for my kids. Even when I'm sick or recovering from surgery, I am here, at home. It means the world to the kids, and to me. Having said that, I am looking forward to school starting and reclaiming my days and starting to play horn seriously again. I want to take up the offer my orchestra partner put on the table; that being, as soon as I am ready, he has work for me. I want to get my feet wet again with my music, I miss it so much, I ache to play again. I don't know if I can get to the level of professionalism I used to have, but I am planning on starting to practice with a goal. Pain is sometimes in the way, though. That is why I can't work. I'll take this one day at a time. Working and having surgery don't go together. That's why I get disability payments every month, because I can't work. But I am determined to try. I miss that aspect of myself... it's a huge part of my life that was cut away with Gapey. While I cannot regain the losses of having had NF, I hope to regain being an orchestra (or chamber music) musician.

As far as my doula work, that must remain on hold. It is too challenging to be the person that people will rely on. It is too physically draining, and I have too many physical restraints stopping me from doing a good job. Helping out my friend in the hospital is like being a doula. Now that she is awake and aware, no longer in ICU, she needs lots of emotional support. Each time I am there with her I massage her feet, and speak soothing words, much like I did with pregnant women. I need to give, it is in my nature. I am searching for balance, and am creating a plan about how to achieve that. With Gd's help.

Good night, a new week is around the corner. Let's pray I feel as strong at the end of it as I do now.

Please continue praying for my friend, Shoshana Chaya Bat Bassie. She is getting stronger, but is not out of the woods.

May this week bring health, strength, and loving kindness to all of us!!


  1. If we can help during this busy week-let us know!!

  2. So close to chagim? May you be blessed with a year and ever-after with painless healing, inner happiness and spiritual growth. And I can prepare food for you. Let's discuss the menus (plural).

  3. First, I'm so happy your friend is on the mend. And also that you've been able to remain off the big drugs. May the new year be one of much-reduced pain, meaning, growth and fun!

  4. You never cease to amaze and inspire! You are an incredible woman!

  5. I’m glad to read that you are making progress; yes, the pain is still there but you are finding ways to manage it. Good for you.

  6. Dear Sarah
    Wow is the only word that comes to me after I read your blog. It expresses my incredulity and admiration for your awareness and strengths in all aspects of your life.
    May G'd continue to give you the strength that you need this week and in the future.
    כתיבה וחתימה טובה
    May you have a future of painless health,
    Very sincerely

    1. Thank you, Yehudit! Such kind words.

      May you and Ariyeh also have a wonderful year of HEALTH and simcha!!

  7. Woo hoo, Sarah! SO proud of you.
    Love, Miriam

  8. sending you lots of hugs - so happy to read this update, and wishing you continued strength and happiness. love you

  9. What can I say love, my admiration for you keeps growing, knowing that you feel strong after such a trip w/no drugs, what can I say... you are strong!! A hero!
    A big hug to you, and a flying kiss!

  10. Sounds encouraging to have a hospital free year. Good luck with the test and let me know if you need me to come down when you have surgery.


    Steve Klein
    Haaretz English Edition

    1. Thanks, Steve!
      The surgery date is not set yet, but of course we'll let you know. And yes, it is encouraging to have a whole year with no hospitalizations. First time in 8 years. On top of that, I went off all the narcotic pain meds, so I feel like my body is so much healthier in general. Mentally that helps me feel fortified.