Steroid shots; I'm going for temporary

Looks like steroids are a way of life for some... and I'm among those in the ranks. I don't love the notion, but they work. I know it's a temporary fix, but I'm going for less pain in my life. It doesn't address root problems, but I can only do what I can do.

Last Thursday I was at Ichilov hospital in Tel Aviv to see my orthopedic oncologist about my left hip pain. I was going through my checklist of what the pain could be from, and after ruling out osteomyelitis, PVNS was next. I had that 10 years ago, and underwent a few surgeries in the hip because of it. It has a 50% recurrence rate, so I had to go check that out.

The orthopedic oncologist said he'd take a look at my MRI's that I have to do in the next few months from various other doctors, but he was almost 100% sure that what I am suffering from is bursitis of the hip. He offered to do steroid shots into my hip right then and there, and after thinking about it a little bit, and discussing it with him, I went for it. Even though steroids can lower immunity, and even though I have an open, active infection going on right nearby where those shots were going, the infection being in my skin graft. The orthopedist wasn't concerned about that infection... that concerned me. But I went for it anyway. We will go to great lengths to be out of pain. At least, that's where I've come.

The shots hurt like hell. In the Mayo clinic they were administered into my stomach wall muscle after a local anesthetic was given first. Here, it was straight into that hip joint with the needles. Two places. The rest of the day I was in intense pain, could barely walk. I slept with a heating pad on my leg, and it was a bit better the next day. Shabbat was a little better yet, and today (Sunday), I actually got myself to the gym to get working again. It hurts, but I do think the steroids are helping already actually. The injection points look pretty clean, I think I'm OK. There is one guy on my NF support list who got NF through a steroid injection into his hip. But you can't live in fear.

Interesting outcome is with the open wound on my graft- it seems to have reacted positively to the steroids, and overnight it formed a decent, tough scab. Usually it scabs, but after a shower, the scab comes off and it oozes again. I have been cleaning it like four times a day from gook. But after the steroid shots into my hip, it dried up and formed a durable scab. How interesting, right? It's been dry for three days now... life is full of surprises! I know that the staph infection in that area isn't gone, steroids don't kill infection, but not having an open wound is a good thing.

The first night after the steroid shots I didn't sleep *all night*. I didn't have that effect after the stomach steroid shots at Mayo. I was just wired awake, no matter what I tried. I've been making up for that missed night since then, headachey and tired a lot. But like I said, I got back to the gym today, did 5 km on the bike at a decent resistance, and a lot of weight training and stretches. It's hard work.

I am in pain in my hip now, but it's tolerable. I'll turn on the heating pad again when I go to sleep.

In the meantime, I saw good friends on Shabbat, and celebrated Dov's 20th birthday (!!) with a home-made cake. First home-made birthday cake I made in a long time, baruch Hashem. It was a gluten-free carrot cake, and it came out great! We had a little family party for him last night.

I hope I'm entering a new phase in ability... if the steroid shots keep warding off the pain, who knows what I am capable of! But it's gonna take time. I'm tired... a lot. But not giving up. Not giving up.

Missing my father on his would-have-been 88th birthday. I had a good cry Friday night, not even realizing it was his birthday. My soul knew, though. I just want to pick up the phone and talk to him, joke around like we always used to, tell him he's the best and wish him a happy birthday. In a few weeks, we will have closed an entire year after his passing. Hard to believe. I miss him terribly. There was never a gentler soul in the world.

I'm not ready to stop grieving him, as per tradition after the year is over. Well, not really "stop grieving him", but go back to resuming all the "normal" things one does when they are not in the year of mourning. Going to live music concerts (I miss those), buying new garments, going to public parties. For me, it's been over two years that I have been basically out of the swing of doing these things. My mom died, then after her year of mourning was finished, four months later my father died. It's been pretty intense. I'll get back into activities as I feel I can. I just keep making paths around the big hole that is in front of me all the time, and I go on. Sometimes I fall into that hole... the hole of losing both my parents in what feels like one-fell-swoop. Hard to incorporate.

Happy 88th in Gan Eden, Dad. I love you and miss you.

Fighting... dedicated to my mom.

Dedicated to my mom, on her second yahrtzeit (marking to the day of the second year of her passing)

~1999

The theme of bearing scars, and fighting adversity has come up in a few interesting ways recently.

There was a "thing" going around Facebook about finding out what was the #1 pop song on the charts in the year you turned 14; find out that song, and supposedly it defines the life you've lead. I Googled "pop chart in 1982", "#1 hit song", and I got "Eye of the Tiger". I think we were playing it in high school band, too, that year... good song!

Here are the lyrics:

Rising up, back on the street
Did my time, took my chances
Went the distance, now I'm back on my feet
Just a man and his will to survive

So many times it happens too fast
You trade your passion for glory
Don't lose your grip on the dreams of the past
You must fight just to keep them alive

It's the eye of the tiger
It's the thrill of the fight
Rising up to the challenge of our rival
And the last known survivor
Stalks his prey in the night
And he's watching us all with the eye of the tiger

Face to face, out in the heat
Hanging tough, staying hungry
They stack the odds still we take to the street
For the kill with the skill to survive

It's the eye of the tiger
It's the thrill of the fight
Rising up to the challenge of our rival
And the last known survivor
Stalks his prey in the night
And he's watching us all with the eye of the tiger

Rising up, straight to the top
Had the guts, got the glory
Went the distance, now I'm not gonna stop
Just a man and his will to survive

It's the eye of the tiger
It's the thrill of the fight
Rising up to the challenge of our rival
And the last known survivor
Stalks his prey in the night
And he's watching us all with the eye of the tiger

The eye of the tiger

"Just a man and his will to survive"...

I do have a will to survive, it's kept me here for the past 11 years through horrific illness and hopelessness. It's recently been challenged, but that 'will to survive' is still with me. But so is the challenge of that will.

My mom also had the will to survive. When she slipped into a septic coma (sound familiar?) at age 79, with a serious heart condition, nobody (except me & Dad) thought she'd defy odds and ever breathe again on her own. But slowly, over the course of three months, she did just that- got off the respirator. She fought other diseases, she got home from the hospital, at age 79, after a three month coma. But she couldn't walk again. Post-Sepsis Syndrome might be to blame for that, nobody ever figured out why she couldn't walk anymore. She was bedridden for 4 years thereafter, but in her own home with a live-in health care worker. She survived, but her will to keep fighting weakened, as it would.

The main differences between her story and mine are that my septic coma was at age 39, and I had many surgeries to contend with thereafter. She did not. She lived until just a few weeks before her 83rd birthday. I have a long time to keep my survival will going. (We assume). But I did walk again, I re-learned to walk after NF, then again and again with all the hip surgeries. I endured horrific pain with my post-NF abdominal surgeries. It's just, dealing with chronic pain wears you out. My mother was never in pain, thank G-d.

Can I endure this? Will it ever end? I'm sure she asked herself those questions daily, and that was without being in pain. But she endured horrific loneliness being bedridden all those years (some of it self-imposed, but I won't get into that here).

But chronic pain is a very lonely road. You can't talk about it too much because the people around you can't deal with it.


The second song which came into my head yesterday (also because of something I saw on facebook), and didn't leave my head all day, is "The Boxer" by Simon and Garfunkel:

..."and he carries a reminder, of every glove that laid him down, and cut him till he cried out, in his anger and his shame, I am leaving, I am leaving, but the fighter still remained, yes he still remains..."

Well, I did run away from home, this past Shabbat.
Something triggered hurt in me (I am aware of what it was), and I put some things in a backpack, and went out, without anyone in my family knowing where I was. Remember, it was Shabbat... no car, no wallet, no phone. I went walking, wound up at a destination about a kilometer away- surprised myself. I was gone for 5 hours. In the broiling heat, and in pain. It was somehow freeing and deeply sad at the same time. But I came back.

I am fighting the constant urge to leave still. I'm fighting the urge because you can't run away from your problems, they come with you if you don't take care of them. I'm also fighting the urge because, well, I'm not well. It's complicated to go stay with someone else. I'd love to just go alone to a hotel, actually, but can't bring myself to spend the money. Staying with someone else means traveling (I want to go stay with my friend who lives a 3+ hour drive away), and dealing with a possibly not comfortable bed, or bathroom arrangement, and my body needs creature comforts. I need my kitchen and my cooking, and my bed and bathroom. I know that sounds superficial, but I'm not 25 anymore, and I'm not well. Even with all my creature comforts I'm in constant pain. I don't travel well.

So, I'm not leaving, even though I have been heard- in my house- saying more than a few times over these past few weeks/months, "I am leaving".  Yes, even with the kids hearing it.

But the fighter still remains.

My fight constitution goes up and down, though. I'm not sure how much more "resuscitation" efforts my body and soul can endure anymore. I've been in too much pain for too long.

But there is nowhere to run away from my problems.

I'm working on them. 

In counseling.

Sometimes alone, and sometimes with Robert.

I'm not running away. 

I came back.

For today.

Update from The Front; medical and spiritual

So guess what? You can't trade migraines for tummy pain. They aren't the same. These past few weeks have shown me that my migraines are slowly creeping back into my life. They started very low level, like just a niggling headache. But in the past 4 days or so they have come back, pretty strong, but not the strength they were last spring before I went on the Topamax. But I no longer doubt that it could get to that, even while I'm suffering with this abdominal pain.

I am going to try to deal with them on a per-time basis, and raise my b-6 vitamins & magnesium. I am going to try to not go back on Topamax, even though I had NO migraines the entire time I was on it. I just think the fewer medicines the better. But if they get really bad, I reserve the right to go back on the Topamax.

Present status report:

1. Waiting to do an MRE, which is an MRI of the small intestine (ordered by the gastro).
2. Waiting on a recommendation for a surgical consult in Jerusalem's Hadassa hospital, with someone not affiliated with the surgeon who put in my mesh & clips, so I can get an objective opinion of my CT scan, if things are really OK or not regarding the hardware.
3. presently doing Homeopathy, acupuncture, and will soon start Chinese herbs.
4. Have started a full vitamin regimen (+ probiotics, Tumeric, other interesting things) from Dr. S, including fiber to calm things down in my intestines.
5. Have implemented many changes in my diet, which are hard to keep, but I'm working on it one day at a time (also from Dr. S)
6. bought a hernia belt at a medical supply store: it reduces the pain when I wear it. It shows me that most likely the mesh is failing, and irritating my stomach. It's uncomfortable to wear for the long-term throughout the day, so it's not a long-term solution, but I can walk for a longer stretch of time when I wear it, it helps lessen the pain. It is a wide, huge band of elastic and velcro. I think that it is holding me in when the mesh is not any longer doing that.
7. Got a date to go to the Mayo clinic in Rochester Mn, if Israeli medicine hasn't helped me by April 9th. I will go there for a week of appointments and evaluations/tests, and see what happens. It gives me over a month (and after Passover) to do these other consults here and see if I can find a viable long-term option here, in Israel, with free medical care. Going to the Mayo would be predominantly out-of-pocket, and ideally I hope to avoid that, obviously.

I feel really backed up against a wall. If the mesh is indeed failing and causing the problems, what the heck am I supposed to do? I think I said last time- reconstruction surgery would involve a muscle graft for my stomach wall muscle, and that can't be done while I have only a thin skin graft covering the whole area externally. Without the mesh I'm in trouble, but as [I suspect] it is, I'm also in trouble.

I pray that the right conduit comes from Hashem (G-d) to propose a viable and safe long-term solution. As I mentioned, I am waiting to hear from a few different sources about a recommendation for a surgeon in Jerusalem unaffiliated with my surgeon from Tel Aviv.

Meanwhile, things remain very difficult. And painful. And I'm trying to take this all one day at a time.

I learned from a religious doctor, who I have been listening to his classes on the internet, that one cannot connect with Hashem when one is in pain, hungry, or sick. I am in pain, and I am trying to connect with Hashem, but it's not happening so frequently. I found myself the other day (Shabbat) with a migraine, abdominal pain and digestive pain, trying to talk to Hashem. I just called a meeting with The Boss. I found when I called Him Abba (my father), I could talk freer. I thanked Him for all the million things there are to be thankful for. I put in my requests for other sick and hurting friends. And asked for Him to send me the right conduit to help me out here. I was proud of myself for making the effort to talk to Him... I haven't been feeling so spiritually communicative of late, for obvious reasons. But I'm trying.

Life is happening and passing me by at the same time. Let's pray that a reasonable solution will come down the pipeline to me from the right person, and soon. I'm willing to do surgery if it means long-term benefits. Thing is, I thought putting in the mesh and clips *was* the long term solution.

NF has really shaped my life these past 10 years, for the good as well as for the difficult. I don't understand Hashem's ways. I imagine my parents around there with the all-knowing wisdom I imagine one may get after death, and I wonder what they see when they are looking at my life from their perspective now. I asked Hashem to make sure they get together, if they haven't found each other yet (Dad's only been there for a few months, I don't know how long it takes, right?). I asked Him to let them come visit me in my dreams. I haven't seen them yet. But I hope they will come visit me. I miss them.

God, do you hear me?

It's been a week of trying to heal.

And I dare say, it's working...?

Sunday found me at another treatment with Dr. S. It actually may have been the last treatment, I feel like they aren't really doing anything. I left in hard pain, drove back to Be'er Sheva. On my way into the city, I got a call that a friend had just broken her ankle, and how could "we" help her. I didn't have to go to the hospital to rescue my friend, but knowing she was alone made me make that left turn into the hospital off the main road into the city, rather than keeping on straight to go home. Another friend was coming with crutches, but I went anyway. Turns out it was good I went... good for her. But not so great for me, unfortunately. Also my kids all needed me for different dramas, and I wasn't home. Teens have a lot of dramas, and I have kinda like four teens, but one is 12 (they call them "tweens").

After situating my friend in her home with her broken ankle, I was short-tempered and in terrible pain by the time I got myself home. I needed to cook some dinner, and deal with teen-angst. When I have pain, I have no patience for their angst. But I have to. Robert is never home evenings, he comes home late every night from work. Often with a ton of groceries; bless his soul for being the sole grocery-getter, but it makes him home that much later. I miss him in the evenings. It's harder and harder for me to make dinner and drive the kids around and be their everything. Being in constant pain changes the whole game. Everything. And for whatever reasons, Ya'akov chose not to go to school this week, so I had three instead of the more doable two usually home during the week.

Monday I went to my friend and long-time healer, Miriam Maslin. She's also an hour drive away, like Dr. S., but a different city. Going through a lot of gas here trying to heal. It was time for me to go to her; part of trying to heal includes dealing with grief, as well. By all standards, my year last year was incredibly hard- losing my mom, then Sabrina, and with Sabrina went my dream of adopting Tessa, her daughter. I didn't want her to have another sick mom. It's a lot to lose at one time. This belly pain was in full force by the time my Dad died this past November.

God I miss my parents. Do you hear me, God?

I miss my father, well I'm still in a sort of shock that he's gone... but Mom, oh, Mom. I wish I could hear your voice on the phone again. I wish I could climb into your bed with you just one more time.

That turned into a pretty intense therapy session... dealing with grief. Forgiveness, of myself, and of others, even if they're already gone. Lots and lots of tears were shed. And I feel there are many more tears... I feel the grief is so, so deep, sometimes I fear I will never get out of it once I let it in. My mother and I had a very complicated relationship, so many things left unsaid. I haven't even really started to deal with my Dad's passing. Believe it or not I am still shocked about it. I speak with my Aunt now, his older sister. She's grieving, also. I called her last night and told her I miss my parents. She understood. That was good.

There's grief about going through NF, also. Losing my careers at age 39. Little stuff like that.
I mean, nobody goes through life escaping grief. But forgiveness, that is a big thing, and has to be done or else it poisons our bodies through the soul. I haven't forgiven the surgeon that made the mistakes that landed me almost dead, maimed. Because he also "took care" of Sabrina... it's complicated. The way she died was so horrible.



The week went on... I started translating my medical documents to apply for an appointment at the MAYO clinic. That also got me so uptight-- page after page of the same thing- "patient's complaint: abdominal pain", exam- no significant findings. Gastro doctor- "pain medication as needed, surgical consult recommended". Surgeon- "I don't see anything wrong according to the CT scan, she should go to a pain clinic", gynecologist "nothing that I have examined is causing her pain". It's all the same.

Yesterday I went to my twice-yearly neurologist appointment. Told him that since I saw him last, there were a few ER visits for out-of-control migraines last spring, I was on and then off Topamax, and oh, my father died. And I told him about my latest abdominal pain crisis, although I said "it's not your department, but interesting to note that even though I'm off the Topamax, I haven't gotten my migraines back since this belly pain started." He said "it's the same thing-- it sounds to me like you have IBS (Irritable bowel syndrome)". He explained to me how a person like me- prone to migraines- can get IBS... it's the same body-mind-soul connection, just manifesting differently. Dr. S has been telling me this, in other words, but the same thing, also. When I told my neurologist that it started after we came back from the US, and I had been on antibiotics that messed up my stomach in the US, he said that was the trigger. Dr. S says the same thing. Now the fact that I have alternating days of awful diarrhea and then days of constipation, and all the pain, it points to IBS.

That is not a good diagnosis. It can be very long-term. And it's vague, but I may just have to deal with it.

The good news is that my neurologist (the best one in Be'er Sheva- Dr. Ya'akov Ezra- amazing man and doctor) got on his cell phone immediately to the gastro who I had seen, to talk with him about me, with me there. Apparently they are good friends. He got me into gastro for Sunday (the wait is often months to get to this doctor). My neurologist has a whole program of dealing with all sorts of pain through meditation and relaxation. I took his meditation course for two months a few years ago, hoping it would help with my migraines. It didn't. I'm dubious that it can help with me now, either, but apparently he has a special person to do the meditation/relaxation course for gastro problems. He told the gastro doctor to set me up with his person in his department. My neurologist was the only one who could make a diagnosis. Go figure.

I'm also going back to my osteopath in Jerusalem later Sunday. I have had good results with him before, and during this whole thing I haven't seen him. Robert encouraged me to go back to him, so I will. You never know.

The upshot is that today, Thursday, I have less pain. Markedly less pain. I don't know why, but I am making so many changes it's hard to know. My homeopathy changed, my diet is changing (with Dr. S), and who knows, maybe doing some of the grief stuff I did on Monday is freeing me up a bit. It's been amazing to feel less pain today. Let's hope it is a continuing trend... we have a lot of guests this Shabbat.

I am *still* not at all convinced that there isn't something else going on in my abdomen. I still feel that the "real" diagnosis is being missed, but we'll see. It may take much longer to either make itself known, or maybe it'll just go away as suddenly as it came. It has to go one way or the other. IBS, though, that could be a life-time management problem. My father had IBS, he also had Crohns disease. Dr. S thinks I definitely may indeed have IBS, and that it can cause this much pain, especially in someone who's stomach wall muscles are already compromised by all the surgeries and hardware.

Life is hard work. I hope some day all this hard work will pay off and I can have real joy- in Hebrew -שמחה - simcha. Being in the midst of my second year of mourning is really, really heavy.

And writing this blog entry took so long that the day has now ended, and my pain is back to quite strong. I wish God would let me into the secret of what I have to do to heal myself.

Inventory: Emotional and medical

I am reading a very wonderful, very powerful book at the moment called "My grandfather's blessings" by Rachel Naomi Remen. She is a wonderful writer, also famous for her "Kitchen table Wisdom" book. She is a psychiatrist who has been through many career changes, currently working in hospice, in California. I am receiving so many blessings from this book, it's helping me with my mourning. Rachel Remen says that if it was up to her, grief would be taught in kindergarten right up there with sharing toys.

I wish I had her as my shrink!

We have no guidance in our regular lives to navigate grief. It comes upon us by surprise, and we are as if left in a deep, dark, cold forest with no tools how to get back home. That's where I've been the past two months. In deep, dark grief. And it is up there with the hardest things I've ever had to do in my life. For the past few days, though, I have been feeling the fog lifting at times. I have had some times of feeling... a little better. A far cry from "well", but I can see times that the grief can lift, temporarily. If I only talk about it with a friend, though, the tears are as close to the surface as they have been over these few months.

I thought grieving for losing my health, careers, personal body image because of the tremendous wound damage from NF, losing lots of control over what happens in the house because I am sick so much, was a lot to grieve in the past nine years. While that's all true, since my mother passed away in June, and Sabrina in December, and especially because of all the details involved in Sabrina's passing, it knocked me down HARD. One of those "details" is the loss of not adopting Sabrina's daughter, Tessa. I'm talking about monumental details of that level. It's all SO. MUCH. I have been overloaded with sadness. I am still there, and I hope and pray the right kind of support will come soon.

Medically:

I need a secretary. It is so hard for me to follow-up on all the paperwork and appointment making and calling. If I want my throat problem fixed, I have to do two tests; one is a swallow test where you swallow liquids (Barium) from thin to thick, and the swallowing is recorded by a special type of x-ray. I also need a neck CT scan. Haven't scheduled either of those yet. Oh, and also voice coaching from the hospital speech pathologist because the upper part of my voice is shot since this whole throat fiasco started.

Then yesterday I was in Tel Aviv at the orthopedist. He looked at my last scan, but it isn't the type he needs, so I have to schedule an MRA for my right leg. Looking at the scan I had he commented that my left hip looks terrible, filled with fluid. He asked me what the oncologist says about that, I told him they said it was fine. No other comments. Didn't boost my security, though, that we are only looking at the possibility of one hip replacement... could be TWO. But I can't go there. I can't deal with that information any time soon. All I can do is try to make phone calls in morning times to make appointments and send faxes. These days, that's a lot for me.

But I did play horn the other day. Felt awful, sounded even worse I'm sure, but I did it. May do a shared recital with a friend in a year's time for my 50th birthday... we'll see...
And I bought myself a new (2nd hand) bike, and went riding with Dovie.

It's not all gloom and doom. But it certainly ain't paradise. I'd even settle for normal.

My fight is gone

I want to scream from the hilltops: This Is Not Me!!! I am not the one who is weak, in pain, and often feeling ill. Who the hell took Sarah and left this ghost in her place? I don't want this life. I want life, but not this one.

These days I am one "how are you" away from crying. Raw.

I think Gd cries with us when we are sad

Since age 39 I lost my careers. I was an orchestral musician and a birth doula (y'all know that).

I still feel the victim of someone's mistakes. I feel that my life, as I was building it, was stolen from me. No, I have not gotten over it yet. Or maybe I did get over one stage of it, but it's back for more healing. The thing is that it happened when I was young... it's a long time to live the life of a patient rather than working at the careers I loved. I *want* to work, and can't. I'm 48 years old, reasonably with a long life ahead of me still... of this? Do you know how awful it is to be turned into a full-time patient? I never feel well, I don't know what is wrong this time. I am avoiding going to my orthopedist, avoiding doing the next round of blood tests. Should I go back to the vitamin doctor? (I am still taking a good strong regimen of vitamins) Is there a test I could do that would show us why I never feel well anymore? What would life feel like if I got some strength back?

I started back with my previous therapist, hopefully that will help some.

I don't like being this me. I walk through my days, sometimes better than other times, but, talk about mourning... first my Mom, then Sabrina, and... and now the old me. This is the hard stuff of life. Dealing with the fallout.

Someone told my yesterday that I should do "inspirational speaking". I don't feel very inspirational, though. I feel like a wash-out.

I think Sabrina's passing is working it's sadness on me. She was always my "person" who was fighting harder with her harder medical problems. Since she's gone, I feel like "what's it all really for"? Why fight so hard?

My fight is gone.

More on mourning: not for the faint of heart

The thing about doing the split-personality charade is that there comes a time that you just can't do it anymore.

There is just Too Much Heaviness in my life to "put on a happy face". I can't. I'm mourning. It's so heavy, I can hardly bear it. But yet, I am bearing it. My friend and spiritual healer Miriam Maslin says that I have gone through worse. I can remember being in worse situations, but the edge wears off. Hashem protects us from recalling that edge as time wears on.

I am on the edge of crying, or am deeply crying every day. I didn't know how hard this was going to land. I'm of course talking abut my friend Sabrina's passing. I think, also, because my father was here when she passed away, I had to stash my feelings away for the time he was here so I could be with him. Oh, and he was sick with pneumonia. Then, the day after he left, we went away for a Shabbat for a batMitzvah of the daughter of close friends... and I locked up my mourning box for that, too, of course. I can't charade anymore, though. I'm not really making it by faking it. Not for this.

This is paraphrased from a letter I wrote to my friend/spiritual healer:

I miss Sabrina so much. We were very connected, and she was in my thoughts all the time. All the time. I visited with Tessa the other day, that was great. I saw Sabrina's necklace on her, and I could barely keep myself together for her. I took that necklace (along with her other jewelry as well) off of Sabrina after she died. I told Tessa I took the necklace off her mommy. She was excited about that, but then asked me why I didn't let her do it. Ummm, ya. 

Sabrina was such a complicated person, and could be thorny sometimes. I stayed with her because of my own commitment to myself that I won't leave her alone no matter what, but she sometimes seemed to push people away. Still, she was so funny, and so real. I was intertwined with her, enmeshed with all she went through. And I understood all her intricate medical problems, and saw them all-- infinitely worse than mine. There is a huge hole in my life. It hurts so much. Even though we both knew she was dying, knowledge doesn't soothe emotions. I didn't expect to crash so hard. I'm sure it doesn't help that I am also mourning my mom who passed away six months ago, as well. Actually, there are some connections there........

I need to live, though. I need to get out of bed, I need to get back to the gym, I need to live. I don't feel that life force running through my veins these days. I feel either hurting, or numb. I just don't want to do anything. Yes, that explains how I feel- the life force is quieted. I hesitate to say any stronger word than quieted.

I plan on having a few sessions with my former therapist again. Although not much can be done about mourning except to go through it. You just have to do it. Like most things in my life, though, when it hits, it hits HARD. I feel crushed under the weight.

~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~

All day today I spent preparing my son Ya'akov (16) for his hernia surgery tomorrow. We had the appointment at the hospital for the pre-surgery check-up, and all day he was asking me questions about what to expect. I have to balance my answers with equal measures of "don't worry, it really is small, and very different than my hernia surgery", and "yes, it will hurt when you wake up, you may be nauseous or throw up, I understand you are scared...." I can explain all aspects of going under anesthesia, what it looks like, feels like, everything. Rationally, with extensive knowledge, I hope my preparations ease his mind and not the opposite.

Under the layer of the words I am telling him, I wonder if he knows I am Very Scared about this. He's joking that he will die tomorrow (you have to know Ya'akov to understand his joking). He saw me go through the Flesh Eating Bacteria after my hernia surgery, he saw the countless complications and surgeries thereafter... the lawsuit... my health decline. I am trying to be strong for him, but I crumpled in Robert's arms the other day because I am so scared about putting him through this.

Tomorrow (Thursday the 12th) at 4pm Israel time. 

Ya'akov Ariel ben Sarah Rachel. 

Thanks.

Oh, and did I mention I am barely sleeping? Seems the sleeping pills no longer work on me. It's a whole other post actually. Pretty awful. Makes pain much harder to tolerate.

Yeah, things kinda suck.
But only with the existence of dark can light be known... I'm trying to be patient.

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.

Necrotizing Fasciitis recovery: the ten year plan

If you had told me what would transpire after I had NF, and how many years I'd be really deep in medical problems, how many surgeries, how many seriously scary/dangerous medicines I'd go through in the subsequent ten years, I'd be stunned, and be convinced I'd die before all that stuff came about.

Well, it's good we have no crystal balls in our lives, because I get to be alive, I got to re-make that decision many times over the years (to stay alive).

At this time in recovery, I have "only" three prescription medicines I am on. That is pretty amazing considering some of the pharmacological insanity that has taken place over these years. I am actively in withdrawal from one of those three medicines- Lamictal. It is a hard one. Depression is hitting hard, I do not own my emotions. I haven't laughed or even smiled much recently. Those of you know know me well know that that is a very rare condition. Almost no matter what is happening, I always have some humor, and laugh out loud easily. Now, it all seems so dark. I know the Lamictal withdrawal is in the driver's seat. I can't do much about it these days. Tears are always close to the surface. Always. Of course, this time period lends itself to depression, too, even without the effects of going off the Lamictal (which is a mood stabilizer).

Taking into account that my heart has a Big Hole in it where my mother used to be, it is very hard to be in mourning. I am of course, also still dealing with discovering more things that were stolen in the robbery (more things with deep sentimental value. I'd rather have given the robbers the cash it was all worth, than have so many sentimental items taken. Now we only get the cash back from the insurance. Robbers, if you are reading this (which I *highly doubt*), here's the deal I am prepared to offer: The insurance check in exchange for our stuff. OK? No questions asked, no police. Just return what we deeply miss, that's all. Deal?

Then there's the frequent headaches. Withdrawal headaches, possibly. They come often, and although they are very difficult to go through my day with, the recent ones have not gone to Epic proportions, thank Gd. I have had one all day today, and still have it now, so I will make this short.

I dream about the next withdrawal being the sleeping pills. A *very scary* withdrawal. The more I read about withdrawing from Valium-based drugs, the more scared I get. My body cannot get into anything even close to deep sleep without a pill. It's been almost 9 years of that... every. night.
When I started it, I needed it. Raging PTSD had me not able to fall asleep, or when I could fall asleep I would often wake up screaming from terrifying dreams. I needed the pills then. My nervous system was in overdrive and there was no foreseeable way to tune it down without pharmacological assistance.

So, theoretically, the plan is to take the next few months to get completely off Lamictal, then take a break, then start with the sleeping pills, if I am in a space in life that will allow for it.

That would leave me only with one prescription drug... Cymbalta. It is for depression as well as helping the nerve pain I have regularly. So far in my 10 year plan, I don't foresee going off that. I think it is synergistic with my body's needs.

At some point in there I will decide if I will go on the daily-preventative-migraine medicine my neurologist recommended. I was already supposed to have started it. My gut instinct is to hold off. If my headaches are under control with the occasional swallow-full of analgesics (Excedrin + Advil together), I am allowed to take them twice a week, but not two days in a row. If the headaches don't get worse than that, I don't want another medicine permanently in my system. On the other hand, it may stop the migraines completely and I'm being narrow visioned here. I am just reticent of starting up a whole new drug. I want detox. I don't want to be a lab rat. I don't know what the new medicine might do to me with the side effects, and after all these years, I'm kinda 'over it' with experimentation. So, we're putting the new migraine medicine to the side. I don't have to decide about that today.

So, as I see it, with the ten year mark coming up in May 2017, I may be off two out of the three remaining prescriptions. The ten year plan.

I am already starting to see light at the end of the tunnel, but it is still very, very dark in here.
I started working out again at the gym, though, and that is very positive. Still doing Tai Chi, and I'm getting into more consistently writing my book, as well.

Weaning from the meds is the home stretch... with the help of God.

And with the help of all your support. Thank you, guys, for hanging in here with me. You mean the world to me. You are all manifestations of Hashem in my life. Support comes from Him in many forms. You, my caring friends, are certainly one such form of support. I am presently looking you in the eyes and thanking you.

weaning off Lamictal, 2nd attempt. (nasty drug)

Blog entry #1003. Wow. That's a lot of writing. A lot of living.

When I woke up this morning, feeling the familiar dull pain behind my eyes that grows into a mild headache for the past week (or longer), I wondered WHY. It is so tiring and debilitating to live with a dull headache on an almost daily basis.

This round of headaches is most likely from the weaning I am doing from the Lamictal. I am supposed to wean off of it in order to start a daily migraine medicine. The irony of it all.

Last time I tried weaning from Lamictal, about five years ago, it was horrendous, and I couldn't go through with it. I had to go back on it. My body literally could not function on any normal basis without it. I was hallucinating, having horrific nightmares, vomiting, having anger that is like an out-of-body experience, and finally a sort of psychotic break that made me go to a specialist who told me not to go off it. Not yet.

I researched my blog to find a few posts about it, back in 2011:

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November 30, 2011:

A few weeks ago I wrote about an awful day that I had regarding the wean off Lamictal. I am referring to this post.

Well, that particular day was hell.

I had what felt like a psychotic breakdown. I can't write all the details. I didn't have enough Lamictal in my system, and whatever it was that the Lamictal was stomping down, came up for air. Call it PTSD, but whatever you want to call it, it was deep, dark, and bad. It was triggered by a friend who was angry at me. I couldn't digest that anger like a regular person would be able to. It wasn't terrible anger, just your run-of-the-mill built-up anger from a friend to a friend. These things get worked out and pass in good friendships, like this particular one is. 

But that day, with the Lamictal at an all time low of 5mg (down from 150mg, mind you), I broke at the appearance of this friend's anger. It was a day that, before this phone call, I had been dealing with nausea, throwing-up, and hallucinations from the withdrawal. I later apologized to her for having my breakdown "on her".

The break was horrendous. I couldn't write about it then. Only yesterday, at my psychologist's (Lily, my once-every-two-weeks visit) office did it all come up again.

The next day after the psychotic break, as I am calling it, I went to a specialist; a psychiatrist who specializes in psych meds. He simply told me that: if it is awful on this low dose of Lamictal, than go to a higher dose. He explained to me that not everyone can go off medicines just-like-that. What about the contraindication with the Lyrica? Well, he said, on a low dose of the Lamictal, it isn't so bad. Is it *ideal*? No."But", he said, "is any of this ideal?"  Any other drugs he thought of to switch-to would have been, he said, much more toxic for me.

So I am now on a low dose of Lamictal-- 25mg. I am mostly stable, thank Gd.

But, I am more tired, and I am more depressed. That very well be because of going down so drastically on Lamictal. I haven't been depressed like this in a long time, you know? I'll make an appointment with my regular psychiatrist. It's just that I don't like her so much, but she is the drug decision-maker.

None of this is ideal. 

~My pain is, I'd say, 75% under control. The Fentanyl patches are at the right dose, thank Gd.

~The new cream seems to be the right one for Gapey's perma-rash... it is getting lighter and doesn't hurt/itch anymore. The graft is getting better....

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There are many articles and blogs about withdrawing from Lamictal. It's pretty nasty stuff. Here is one of the more scientific ones: http://www.lamictalanticonvulsant.com/withdrawal.html

For many years I have been taking 150 mg per day

I have been on it for NINE years. One attempt at going off, and I couldn't do it. I was on Fentanyl at the time, though, so that may have complicated things. I have had 150 mg of Lamictal in my system more or less for the 9 years since the PTSD came about.

I recently got to 50 am/50 pm, which is what I am supposed to be on in order to start the migraine medicine (Depilept). But as I am starting the migraine meds, I am supposed to keep weaning from the Lamictal until it is totally gone.

For a long time I have been convinced that I no longer need the Lamictal, but there is always too much going on in my life to randomly wean from such a strong drug. I have been through many weanings of hard drugs, we know that. It always sucks, we know that, too.

I am having some adverse effects from the Lamictal weaning, mainly headaches, which I have so often anyway that I don't know what to attribute them to. Yesterday and today, though, I had unbelievable tiredness. I basically slept all day today, but also needed analgesics to ward off a migraine. I took a sleeping pill in the middle of the day, which I never do, but I knew I needed deep sleep or the migraine would come on strong. My body literally forgot how to sleep deeply on it's own. I honestly do not know how I am ever going to go off the also 9 years of sleeping pills. It will probably be the next weaning. I am terrified of it.

Yesterday a friend came over. She has also had her share of horrendous medical things. But she went right back to work as soon as she could. She has been through a lot over the years since her medical crisis, but through it all she maintained her work. She told me very strongly that my biggest problem is that I never got back to work. I need to work, she says, in order to get back on my feet finally, and be back in life. I tried to explain to her why that is OK for her, but it hasn't been successful for me. She admitted that she doesn't have the medicine thing going on... she never had to take any hard drugs after her medical crisis. She also never needed another operation since that one. I've had 7 others, and lots of hard medicines. It's not a competition, but it is hard for me to come to terms, STILL, that I do not work. Especially because I miss my work, and know I'd be good at either of them (my careers) if I were to return. I tried to explain to her that I really cannot be responsible to someone else besides my family. That I can't always show up, no matter how important the expectations are. On my plate now is all I can handle. She says that if I had more on my plate, I'd handle it, too, it's just a matter of perspective.

But she doesn't have my particular set of circumstances. My problem is that I can't say that it's because of this (X) condition or disease that I am not working. I don't have any chronic diseases or illnesses. I don't have a label for why I am how I am. I just know that ever since I had necrotizing fasciitis in 2007 I have never been the same. Serious diseases and surgeries throughout the years, the medicine trials, going on then off them, the consistent pain, it all takes a terrible toll on one.

Oh, speaking about pain, my newest surgery on the right hip (not quite a year ago) is hurting a lot these days. I assume it is from the weaning. When I weaned from the migraine analgesics also the hip pain flared up.

And the restless leg syndrome is alive and kicking... also a result of weaning. Makes sleeping just that much harder. Nervous systems do not like weaning from drugs.

My fantasies of working again are ruminating in my head. I could do birth preparation courses... that is on my time, not answering to someone else's schedule. I built an awesome course years ago.
About playing music again, I feel it is too big of a job. Hard to get to a decent level again, and too many people to be answering to, too many people depending on you. But the question is, should I push  myself to work? I haven't yet. My kids are my work.... and it's quite full time.

My health is my work. I wish it wasn't. Maybe when I am off the Lamictal, and if the migraine medicine really works as a prophylactic, I may be available to work again. One day at a time. The hill before me is weaning off the Lamictal... and I foresee it being a very difficult climb. But when I get there, I will be so relieved. I came off of five years of Fentanyl... a class "a" narcotic. I can do this. I hope. It's scary, though, knowing what I know about this particular medicine.

I need to get back to the gym.

My mother passed away about 7 weeks ago, and I am still in shock, and at times a bit like paralyzed with that reality.

My house was robbed, and my gym clothes have mysteriously vanished. Completely vanished. The robbers stole many types of things that robbers steal, but my gym outfit? Yet, I cannot find it anywhere. I had to put back together my closets, one piece of clothing at a time after the robbery, I know exactly what is in there. I have checked everywhere. Really? Steal my gym clothes? Well, we'll put it on the insurance claim.

I can go back to the gym anyway, And go I must. It'll probably help the leg pain, too.

I gotta say, things are really rough

Definitely a rough patch over here.

Very rough.

Yes, I know things could be much worse, so having acknowledged that, let's proceed.

Cleaning up after the robbery has been awful for me. I had no idea how difficult it would be. Robert has been helping, too, of course. It seems easier for him. He said he kind of has a layer of teflon; things roll off him easier than they do me. In general he takes life with less angst than I do. Thankfully.

I have been going very slowly with these messes the robbers left around the house. Mostly concentrating on my bedroom, which got hit the worst. It's a huge bedroom with a lot of stuff stored, it is a lot of work. At this point, I miss my organized house more than I miss the things which were stolen. Organization in your outer world helps in organizing your inner world. It's so true for me.

Every mess I tackle comes with anger, sadness, and a kind of repulsion that the robbers disgusting hands were on all my stuff. That's what everyone means when they say it's a huge violation.
I've had a few bikes stolen in my life, but in all the numerous apartments I've lived in, including inner city Boston, the poor side of Cambridge, and inner city Manhattan, I've never been robbed. I guess I've been lucky until now.

It'll get done. We are almost there.
Then we have to make a claim to our insurance, get reimbursed, and move on.

I'll miss the silver kiddush cup we had under our wedding canopy for our marriage kiddush (which we used every week for 18 years to make kiddush every Shabbat), all the children's "bechers" (silver kiddush cups without stems) with their names engraved on them from when they were born; my parents bought each one of them when the kids were born. The set of cute small cups from my brother Peter we use every Passover, our havdallah spice container, the kiddush cup from Robert's aunt to his grandfather (also sentimentally engraved), I could go on. Everything that was stolen was sentimental. Well, not everything, but many things. I won't even go into my jewellery. I'm sad about two things especially... an antique locket with diamonds on it; a gift from my father for my 16th birthday, a gold chain I bought with the first hundred dollars I made as a waitress at my first job in Boston; a symbol of my independence. You get the idea.

Again, my mantra these days... you can't take it with you.
I just buried my mom... that mantra is very poignantly with me these days.

On the headache front:

Not good. Pain is never good, unless you are giving birth. Which I'm not.

I saw my neurologist a few days ago. The good news is that the "thing" that the MRI showed is nothing to worry about. It's not what is causing my migraines, that's for sure.

So, we move on to medicine trials. Joy. I hate playing around with meds, trying new things. No choice, though. I can't keep showing up to the ER with blinding migraines.

I am now starting to lower the dose of one of my meds, and when it gets to a certain dosage, I should start on the new prescription for migraine prevention meds. Weaning off a medicine, again. It's never easy. This particular one, though, I am pretty convinced I no longer need. It just hasn't been evaluated in a long time, I've been on it for eight years. Time to go off it anyway. I pray the withdrawal isn't too crazy. Pray with me, OK?

The proposed new migraine medicine is something I have taken before, and I don't remember why it didn't work out. My neurologist wants to take a chance on it because everything is different now that I am off the Fentanyl, and off the daily analgesics. How I reacted before, he feels, has little or no bearing on how it'll be for me now. We'll see. Another "lab rat" few months ahead of me.

For now, I am dealing with the third day of a nagging headache, but not a migraine. Nothing is working to take it away, though. I just took my SOS steroid pills, hoping it won't turn into the migraine it feels like it's turning into.

Yeah, I'd call this a rough patch.
In a way it makes sense with Tisha B'av in a few days. Doesn't make it easier, though.

For today, Shabbat Shalom. I mean it with all my heart. Shabbat Shalom.

The storm after the storm... praying for calm

(this is not as up-to-date as today, but I'll catch up with more when I can. Life has been c r a z y.)

August 3rd

I'm presently in a lovely, quiet lounge at the airport in Munich. I have a few hours before my flight home. I've been away for five weeks. It's been a very intense five weeks.

I still can't believe that my mother is gone.

One thing that struck me strongly as I stood at the cemetery, tearfully shoveling dirt into her grave, was the old saying “you can't take it with you”. In the end, death is just between you and Gd.

I didn't know then that it would be a reminder I'd have to use in my very near future... when I found out this morning that our house was broken into while we were gone. Robert and the kids arrived home safely yesterday (thank the Good Lord for their safe flights), and found the house in shambles. Things were strewn everywhere, a large-scale robbery. Police were called, investigation happened already, under Robert's diligence.

The neighbors had no idea.

I don't yet know what damage to expect. Lots was stolen. I can't even think about it. Robert said my closet cannot even be entered (it's a walk-in), it's totally blocked with all my stuff everywhere. Can't say I am so looking forward to dealing with this.

(but yes, thank Gd we have insurance for everything)

I also am going on very, very little sleep. Like for about three nights now, I have barely slept... one night not even one minute. I just read a lot and listened to podcasts.

I ran out of my sleeping pills. I called my father's doctor to see if he would write me a prescription for them, but it turns out that that particular ingredient of sleeping pill is not used in America. He looked under generic categories as well as brand name, and it is manufactured and prescribed only in Israel. When we discussed the possibility of giving me a different type of sleeping pill, he was very uncomfortable with all the medication allergies I have. He said that it's not a good time to experiment. He's right of course. He gave me an anti-anxiety pill, but it doesn't work for me. No sleep. At all. My body literally forgot how to fall asleep. I just had an 8 hour flight, I took two of the anti-anxiety pills beforehand, but they did nothing. I watched a movie, read my book, walked around the plane, watched part of another movie, read more.... you get the idea. Now I don't know if I should stay off them and try to wean, or go back on them so I can get some real sleep. It's a very hard decision. Not as easy as you probably think. My body has been trained to sleep with these pills for NINE years. Every night. That's a *lot* of time. It's the longest time I've been dependent on any medicine. I want to be off them, but with what is happening now, not sleeping at all, I don't think I can take it. I don't know how to proceed.

Robert read on the internet that it could take years to wean off this particular sleeping pill, and be rid of side effects. What I know is that being off them for four days didn't do anything except make me not fall asleep. I don't know what to do.

Most of this trip, though, except for a few epic migraines, I've been very strong. I've surprised myself with my strength- both internal and external. Very minimal hip pain, too.

Mostly I am worried about my dad now. It's the first time since his wife of 58 years passed away, that he will be in the house without other family members. Me & my family stayed with him in the house for almost 4 weeks, and the week before that was the week of shiva, when my brothers and I stayed the whole time, and many people were in and out all day and evening.

My mother's aide, bless her heart, is staying with him, still living in the house.

I don't know how permanent or temporary that is. There are many unknowns. I hope he will come to Israel, and maybe even stay so we can be near him. He really thrived when we were around him a lot. I especially loved hearing him singing some of his old Yiddish songs to the kids.

It's going to be very hard on him with this transition. It was so hard for me to leave him this morning.

Things are rough all over, I guess.

It's our job to love, to give, and pray for health. All the other stuff? You can't take it with you.

Feeling kind of numb. Except for migraines.

Day 26 in New York.

My mom passed away 27 days ago.

I don't know how or what to write. I feel down most of the time. I can't pinpoint a specific emotion, but down kind of covers it. As down as I am, my father is a thousand times more down. Many things are forever changed in his life, and there is no map explaining how to proceed.

There actually is never a map for how to proceed. If life were "Waze" it would "recalculate" the route every 3 seconds.

I feel kind of numb.

I kind of lost my mother slowly over these past five years that she has been ill. I realized then, maybe about four years ago, that I no longer have her as a mother, in the definition we understand as mother, in our young years. She became another mother in my heart. Over time, she couldn't even hold a phone in her hand for more than a few minutes, and had no capacity for real conversation, at least over the phone, which is all we had.

Losing her body now, and looking at the last picture I have of her- the one of she & I together in her bed- it doesn't really register. When I look at the picture I posted in my blog, it doesn't even look like my mom. I almost don't recognize her. Her vibrancy was already gone by then.

So losing her physically now, well, I don't know. At the same time I say her vibrancy was already gone, this house is ghostly empty without her, even though she was living in only one room of the house for almost five years, without mobility whatsoever. Even though she slept most of the time, as long as she was alive and living here, this house was alive. Now it just seems like a bunch of old dusty things without sentiment. Every corner of the house is decorated by her. My dad walks around here lost and confused. Very confused. I'm worried about him.

I don't know how I feel about the fact that my mother just passed away. I don't know. I have no words, and almost no feelings. I am also just walking through the house, and trying to take care of my kids, and just going through the motions. I just want to sleep.

I miss my home. By home I mean Israel. I think my feelings are there. I'll probably find them there once I return. This trip is so, so long. I feel like I've been here for many months already. I'm tired emotionally and physically.

Wound up in the local hospital the other day. A migraine that speared through my head and made me see white and black at the same time behind my eyelids. After throwing up, I knew there was no way out. I took the pills that were at my disposal to try, but what I took, while it would have put an elephant to sleep, didn't give me any rest at all because I was in such intense, vicious pain.

We showed up at the ER in Glen Cove at about midnight. We left without my father or children knowing; everyone was blissfully asleep. My mother's nursing aide is still living in the house, for the time being, so I knew things would be OK if my father woke up.

We were taken care of pretty quickly. There were only like two or three other patients there, I think. I had my eye shades on, and was just rocking and moaning in pain, and Robert did the explaining. Within an hour I got my "cocktail" of IV meds that I know can rescue me from the pain. The ER doctor said she'd not usually give those meds to a migraine patient, but in my case, I knew it worked, I have a lot of allergies, and we were not discussing other options. Not at that moment, anyway. Robert had even brought a print-out of the evaluation of my recent brain MRI, just in case they gave us trouble, just to show that I am getting treated for the problem.

Anyway, I got relief, and even dozed a bit there in the ER when the meds kicked in.
We got back to my father's house (my parent's house...) at 3:30am. Not too bad.

I've had what I call migraine "remnants" since then. Not a headache, but soreness near my eyes.
I now have the "cocktail" meds in oral form, in case I need them. That's good, but I'm not sure if they will be effective going through the digestive system. I assume I'll report on that at some point.

Anyway, enough about me.

I have to muddle through the next 10 days before I'll get home.
Then, as soon as I get home, I'll be worried about being away from my dad.

Here is a random picture from my high school years, or early college years... we know that because of my big 80's hair. :)
The menorah in the forefront is from Jerusalem, made of Jerusalem stone. We had just bought it for them. My brother Peter brought it with him from Jerusalem at the time.

The copper coffee set, clay bowl and chess set are still on the same table in the living room, in the exact same positions. The more things change..... well, it's actually not the things that change at all. They do stay the same. The people change, though, a lot. So much.

(btw- this is my thousandth (1000th) post to this blog!)

All good things must come to an end

My days have been filled with vacationing, doing fun things, my family, my father.

And two migraines have ambushed me.

My nights are the worst, though. I've been having creepy dreams, then I wake up, and all the sadness comes to me in a big wave, overtakes me.

By day my father needs me to help him through his grief waves. My own can't coexist with his. He is so depressed to have to set out on life now without his wife of 58 years. I can't imagine. All I can do is offer support and make sure he knows we will not leave him living alone in his house. We are looking into options.

At night my sadness comes out to get attention. First in the disturbing dreams, then after I'm awake from that, all this stuff ruminates in my head. I no longer have a mother.
Thoughts of her alive and well dance around in my active imagination.

I have a very sick friend in the hospital in Israel (I'll call her S). She weighs heavily on my heart, too. She is getting worse. We pray that the doctor Rav Firer recommended can help her out if this mess. Please pray for Shoshana Chaya bat Bassie. Give it all you got.

We're leaving the Connecticut house today. It is presently dawn here, and I have half a mind to go down to the dock- a few meters away- and take out a kayak in the lake, and coast in the quiet. But we had a rainstorm last night and the day is overcast and humid. And I should try to get more sleep. I'll miss this lake, and the kayaks, canoe, and paddle board.

It was a good week.
I wish that my mother could be been with us, she would have loved it, and seeing the kids so happy and enthusiastic.

I miss her so much.

But right now, my dad's grief needs to be held and loved. None of this is easy.
I'm going to shut my eyes for a while before the busy day starts.
The anti anxiety pill is kicking in.

Shabbat shalom from me to all of you.

XOXOXOXO

"blue" in the butterfly house in Norwalk aquarium

Hanging in there over here

What a time this is. It's good, it's hard, it's togetherness, it's a Very Sad Dad. (and it's lots of food.)

me and mom in her home hospital bed, last summer

In other news, I got the results from my brain MRI.

There is one finding, and I don't know what sort of significance it has. Since we were looking for 'no findings', I was a bit thrown off to see a "something".

It is some sort of spot in my left frontal lobe, in the white matter. The report says it's non-specific. That's it.

Gotta call my neurologist at some point.

We are going to the Connecticut house on Sunday. We are taking my dad with us. It'll be a much needed break for all of us. Mom's aide, Nina, hasn't taken a vacation in over a year, she was very sensitive to my mother's anxiety when she wasn't around. So, she will get a greatly deserved vacation, too. She needs it. She's like the unrecognized mourner here, she loved my mom very much. She was much more than a physical aide. Not only did she keep my mom glowing (four years in bed and no bed sores) with her hair done and nails polished, she was also like a therapist to her. Whenever mom would get down, Nina would boost her spirits. She would remind mom of her wonderful husband, great children, and six beautiful grand children. She gave her a reason to go on when my mom felt helpless and useless stuck in bed 24/7. I always told Nina that it was because of her that I could sleep at night.

The house we are renting is on a lake, with use of canoes and row boats. I am very much looking forward to it, and it'll be so good for my father to get away from the house after this intense week of shiva. It'll be good for all of us.

In the mean time, tomorrow is the last day of shiva, then we'll have Shabbat here at the house.

Thank you for your tremendous outpouring of love and support at this really sad time. It means so much to me, especially since I am not with my friends and community here in New York. (although there have been visits from a few Be'er Sheva friends! That was awesome.)

Shabbat shalom

In New York, but not the trip I expected

When someone dies, even if they were sick for a long time and you knew the end was near, it is always a shock when you get that news.

I got that shock last Wednesday, June 29th.

My dear mother of blessed memory passed away. It was quiet, five in the morning, she was in my father's arms, she was not in pain, there was no drama, her heart simply stopped working. She slipped away quietly, my father seeing the instant that it happened.

Her heart was always weak, from her childhood. In adulthood, she had a heart attack, open heart surgery, lung cancer, a three month coma from sepsis, bedridden for the last four years, and her body finally let go. Over the past few weeks she was getting weaker and weaker. She was in congestive heart failure. I did know that, I just didn't think that it would happen before we got there. She passed away four days before my family's planned trip to New York to see her. I flew out the next day, and my family came at the scheduled time, Sunday evening. Unfortunately they missed her funeral.

I am sitting shiva at the house I grew up in, with my two brothers and my dear father. It's very hard.

I would like to share the eulogy I delivered at her funeral.

Her casket was right behind me as I spoke, my heart was broken. So, so many people came to her funeral from all over the country, it was really a tremendous testimony to who she was and how strong her influence was. The funeral home had standing room only, and there wasn't a dry eye.

She was intelligent, metropolitan, wise, independent, spicy, beautiful, modest and made a consistent, permanent home for all her children and her husband. So permanent, in fact, that she died in her home, and my father and brothers and I are sitting shiva for her in that very home.

My father, brothers and I gave eulogies. Each one of us touched on her character from our unique perspectives, it was really tremendous.

Here is my eulogy. Farewell, and thank you, 

Theda Kashin, Tova Bat Itzchak v'Sheindl.

May Hashem grant you eternal rest.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~

A daughter being born to a mother after two boys is a game changer. I know that from personal experience, having had my own two boys and then a girl.

A daughter and her mother have a relationship quite unlike that which she has with her boys. I learned that pretty early on in my own mothering years as well, and began to understand my mother on a new level, and appreciate her for all she was able to do to nourish our relationship.

It was not a simple relationship by any means; the whole family can attest to that.

In my younger years, she hand-sewed me dresses and haloween costumes (one famous clown costume is with me in Israel and comes out on Purim). She tried to teach me how to sew, but I didn't have the patience. Though, since I have become a mother, even her sewing talents must have rubbed off somewhat on me, because I mend and hem my kids clothing just like she used to, although by hand. I still can't operate a sewing machine. Sorry Mom.

In my older years, mom was entirely devoted to my education as a budding orchestra musician. There may have been strife involving many other aspects of our life together, but when it came to my music lessons, she was the most amazing support anyone could ever dream of.

She drove me everywhere and anywhere for my musical education and enrichment. When I got accepted into the Juilliard pre-college program, she drove me into Manhattan every Saturday, dedicatedly leaving the house at 6am, for me to get there for a 7:30 rehearsal. I spent every Saturday in Juilliard, and, so, then, my mom did, too.

She'd sometimes go around Manhattan when I was in classes, but more usually she would hang out in the lounge area and knit. She was knitting me a sweater. Not only was she giving up her whole Saturday for me to learn music, but she would be giving to me even as she waited all day in the lounge. That sweater, which I affectionately call my "Juilliard sweater" has been in every closet of every apartment I ever lived in, including where I live now in Be'er Sheva, Israel. Yes, Be'er Sheva *is* in the middle of a desert. But it can get cold there, and some of those rainy winter nights I slip on that beautiful wool high neck sweater, and feel warmly enveloped in my mother's love and devotion to me.

She supported every audition I took, and drove me all over the map to get me to them.

She wasn't a professional musician herself, but with classical music playing from her kitchen radio literally all day in the house, it is a testimony to her endowing us with a love of music, that all three of her kids became musicians.

In my own parenthood, I have acquired a much deeper understanding of who she is... was, and what she had to conquer as the obstacles in her life in order to give us what she was committed to: a home with a mother constantly present, a different warm meal on the table every night, together with dad when he came home from work.This was entirely different than how she herself grew up, she created, and committed herself to a whole new reality, basically out of nothing.

When she fell ill four years ago, we thought we'd lose her. She has a very strong inner power, even when her body is failing, she can summon that power to keep her alive. I believe I inherited that inner power from her. I also have been in medical situations when it wasn't clear I'd make it out alive, and it was pure inner strength that keep me going. Even when our bodies gave out on us, our spirits, mom and me, that spirit never gave up.

Mom's body in the end did give up at the age of 82. I believe she wanted to live a little longer. She knew my family and children (three of whom she hadn't seen in 2 + 1/2 years) were just about to arrive in New York. But her body was completely out of energy. Her heart just stopped working. But her spirit is still with us very strongly, as I know you are understanding here.

Mom, thank you for teaching me about the power of "Tikun", a Jewish concept referring to repairing the mistakes of the former generations. You preformed this tikun quite successfully with bringing us up in ways much better than how you had it. You taught me that, and in honor and deference to you, mom, I continue repairing, I continue honoring the concept of "tikun" while I raise my own children.

I only wish you were still here with us to witness it, and enjoy them with me. My children, husband and I all miss you terribly. You left your mark of courage on all of us, even though you'd say quite the opposite of yourself.

I miss you, and will continue to miss you, and will always honor your memory.
Thank you for giving so much of your life and soul's energy to me.

We were truly blessed to have each other. 

...but what I'd do to climb into bed with you for snuggles and giggles just one more time....