Tuesday, August 13, 2019

amorphous and weak

My days ebb and flow without boundaries.
My mind follows suit, still weary after surgery.
My body is so weary that even my smile seems off as I sit and drink coffee with my dear friend.

I am unsure if this is normal for seven weeks post-op, or if I have a real problem.
I find it hard to get moving, or to focus on anything.

I have no pain, that is a huge blessing.
I don't want to trade my state of mind for pain, though.

My former therapist says that my mind, soul and body need to heal more,
that the surgery was life-changing, and it needs time.

I am not yet cleared for swimming, and am dying to go to the beach.
I mention that because my doctor recognizes that things are still early.
I have to trust him and be patient.

But it is so hard to feel so weak and weary all the time.
My brain function is minimal, I can't retain information,
can't concentrate on my book details.

My days are amorphous, nothing planned, no reason to get up in the morning.
I get up for my kids, but I feel hollow.

It's a hard transition after this surgery, but I think I felt this every time
after so many surgeries.

I hear that the anesthesia takes a long time to get out of your body, your brain.
Let's say it's a month for every hour of anesthesia, then this is still OK,
I am clearing my body from the anesthesia still.

It was a four hour surgery, four and a half hours under anesthesia.
Even my surgeon said for to six months recovery.

I think I am just not used to not being in pain, I don't know what to do with
a body that feels sluggish, weak, and a mind that matches, but I have no pain.

Life changing surgery indeed.
Muscles displaced and grafted, hardware taken out, skin graft removed, over a hundred staples held me together for that first month. It's a miracle. The only hint of pain that I do have is in my left leg, where a muscle was taken and grafted. I was told not to do anything about that, it will stretch on it's own.

No rehab, no physical therapy, that is new for me after surgery.
Just sit and heal with the big elastic wraps on me.

So that's what I'm doing, sitting and healing.
I just wish it felt better for my soul, my body, my mind.

Sunday, August 4, 2019

Stability

Things are getting better, I'm not so down these days. I am still tired, and it's not jetleg anymore. Turns out I am a little anemic....not a lot, but enough to make a difference in how I feel it seems. I did a blood test last week. I'm now taking iron, and homeopathy. It's from all the blood loss from the surgery, my doctor says it's normal, and I should be getting back to normal soon.

In the meantime, my oldest son Dov got engaged! He's also today at his first day of army service, so lots of transitions happening for him! I'm going to have a daughter-in-law. And be a mother-in-law....I hope I do that well. The girl is lovely and sweet, from a town called Ma'ale Adumim, near Jerusalem. For next year, although Dov will be in the army, their home base will be in Bet She'an, where Achinoam (that's her name- pronounced like Ah-chee-no-om) will be doing her national service, and where Dov's yeshiva is, although he won't be there next year. We don't yet know where they will "settle". The wedding will be after the high holidays, probably in November. So there's been a good deal of excitement around here!

And I am out of pain. It's 6 weeks after surgery now, and I don't have abdominal (or much other) pain. That is miraculous. I am still in bandages (binders on my abdomen), but no pain. Well, it hurts a little if I strain my belly, or sneeze, but not much. Normal post-op, I think. I actually feel like it's abnormal post-op. I remember when I got the mesh put in, at the six week mark after that surgery I was still in tremendous pain. It lasted for about a year, and then I went on the Fentanyl to take care of it. But this- this is incredible. The surgeon grafted muscles, moved muscles from one point to another, stretched skin to cover where the graft used to be, and I'm not in pain. My left leg feels a tugging with the muscle, I  think he pulled a leg muscle to be in gapey, but that isn't too bad.

I still have all these restrictions on me, like no driving- that has been hard. No swimming, no stressing the muscles at all. But it's only for another few weeks. I think at eight weeks I'll be able to drive again. I am in constant touch with the surgeon still. He requests pictures of the healing, and I send over there many questions that his assistant answers.

I still feel very weak, like my legs are jello when I am trying to stand for an extended period of time. It's not even that extended, I just seem to have lost a lot of strength. I'm not allowed to do any physical therapy or exercise of any sort, so it'll just build up gradually as I get stronger. It was massive, massive surgery six weeks ago. I am impressed that I am not in pain, and that I am even saying that what is holding me back from standing longer is stamina, not pain. It's really amazing. I take no pain killers at all. Amazing. Not that I was taking any with the abdominal pain over the past two years, but I was for the first two weeks after surgery. I was taking oxycodone, double dose-- it was hard and very painful in the beginning. Very, very painful to get out of bed and walk. But now, thank G-d, it's much easier! I have left over oxycodone which I never needed to use. That is just amazing to me.

I'm so glad to be home with my kids. It was a long time to be away- five weeks! My home in Israel is so special to me, the most special place in the world in my opinion. I'm blessed to live here. I still would like to downsize and move to a house with no stairs, but for now we'll stay here. I just feel that my future with stairs is shorter than we hope....I still have hip problems. But for now, things are good. Baruch Hashem.

Sunday, July 28, 2019

Back Home

Did I tell you I finished the first draft of my book?
Yup! I had a lot of "down time" in New York, and I was able to finish the first draft. I have a lot of proof-reading to do now, though, even before I find an editor to send it to. Then to find a publisher.... all in good time. :)

OK, the good news is out of the way. I mean there is a lot of good news; we made it home safely, the kids are fine, lots of good. But this is my blog where I get to let my hair down and say it how it's been from the other side as well.

I'm exhausted emotionally and physically. I think it's jet lag, but it doesn't act like regular jet lag acts on me. I can get up in the morning, but I feel crappy the entire morning and afternoon. Actually, evenings, too. I go to bed early, and sleep all night, and don't feel refreshed in the morning.

I think part of this is that for five weeks we've been staying with other people, and finally I'm home and can, like I said, let my hair down so to speak. I've had to be "on" while living with other people, not telling them I'm not feeling well emotionally, just soldier on until we got home. I was really, really homesick, though. I missed my kids, and my awesome bed, my house, Israel. I don't really feel much connection with New York or the US anymore, this is my home in every way.
(except that my parents are buried there, and I went to the cemetery to "visit" them before my surgery. I don't know when I'll see them next though...could be many years.)

I don't feel well emotionally or physically. I'm not sure what's going on emotionally, unless it's also jet lag. It was one incredibly intense month, and I am still recovering. I still have a lot of restrictions-- no driving is the hardest one for me. Basically no using stomach muscles in any major way. That is a lot. But emotionally I feel just wiped out and kind of down, and I don't know where the down is coming from. Wiped out is physical and emotional. But real down has come around these past few days, and I'm not sure where it's coming from. I'm happy as a clam to be home, my kids are all [mostly] in good spirits, and it seems like I don't have a present reason to be down, but I am. I hope it'll pass. I'm just coming down from the intense five weeks, I think. And I'm so, so tired. Exhausted. That's probably a big part of the down. What goes up must come down. This may be the proverbial "other shoe" that I wonder about when things are going well. Like "when's that other shoe going to fall?" Shoes are overrated, though, right?

As far as recovering from the surgery, I'm on track. Or ahead of track, but the flying overseas really is making me feel not good. The pain is still practically not there, I am taking no pain medicines already now for two weeks or so. It was so much massive surgery, it amazes me that my body isn't in pain. It's now a bit over a month since the surgery, and I really only needed pain medicines for two weeks. There are a lot of restrictions on me, but that will take time I'll get my freedoms back. I am still in bandages, big ones across my belly in two directions. I'll feel so good when I don't have to wear those anymore. Then I'll be able to enjoy the real benefits of this surgery.

I'm yawning all the time, it's gotta be jet lag. It's probably getting me down, too, emotionally. I am very sensitive to all changes, and these were big big ones.

On Wednesday I'm going back to the day clinic to see my therapist, and get my post-out-patient clinic stuff into place. I get a social worker, and a few other things that will help me to regulate life. Remember, for five months before this trip I was going to the out-patient clinic every day. That changed when this surgery came up, but I still need some of the resources that I had there. That will come. And I am supposed to start at Inbal, the place where women who have been sexually abused can get free therapy. It is my next move for therapy. I already had an intake interview there before I went to the US, so I just have to start there. I have to call them. When I'm ready. I'm not ready yet, I want to get rid of the jet lag.

Things will look up, it's just going to take time. I really think it's normal to feel how I am feeling. I'm exhausted and need to let go the tensions of the last five weeks. Everything in good time.

Friday, July 19, 2019

Imagine

Just got back from my last surgeon appointment in Manhattan.

We're staying with our friends in New Jersey now...I've known her since high school, so it's like coming home. :) The previous family we stayed with was for 12 days, and they were so nice to us and hospitable, I am deeply touched. Then we did the "passing off of the Israelis", where the previous hosts brought us to New Jersey, and the new hosts picked us up from the drop off point and our luggage got transferred from car to car. I just have lots of gratitude for all the help and hosting that has come our way. It hasn't been easy. We are now at the sixth place we've slept at since we landed on June 20th. Yeah, it's been rough. And I've been very homesick...homesick for my kids, for my awesome bedroom, for my yummy bed, for my own bathroom. You understand, right?  I know you do.

Anyway, the surgeons appointment....

I am now staple-free and stitches-free, and got all my questions answered. I am free to travel, but I have to be very careful not to overtax my stomach muscles. I use the wheelchairs in the airports anyway, and we are flying business class so I can lie down. I can't do any exercise for a few more months, I have to still wear the abdominal binders 24/7 which is hard. It adds a lot of girth to my new abdomen, but it is necessary. Those can begin to have time reduced in another 6 weeks. These compression bandages have a lot to do with how my healing goes, so it's abdominal binders for me for a long time. It's complicated because when they are off (after a shower), I need help from a second person to get them back on, so someone intimate with me (really only Robert) has to be home when I shower. OK, we'll have to work around that.

There are lots of do's and don'ts I have to follow. Can't drive for a while when I get back, too, until about six weeks from surgery, which is another three weeks. That'll be hard to manage, but it's all doable. At least there is no school right now. No exercising, no horn playing, but it'll all heal in good time. I have patience, no choice!

So now I seem to have figured out that my migraines were from gluten/dairy/ and night shade vegetables. I get far fewer headaches than I ever got before, and when I do get them, I can trace it back to something I ate. I can't always control the headaches, but I try hard to control my diet, and that certainly helps.

Why bring that up now, seems like a non-sequitur, right? Well, I put that in there because it is a lead-in to how life could very well take a huge turn if this stomach surgery really worked to take away the two year pain I've had. We won't know that for a while, we're in a waiting period right now. But what if....? My whole relationship with pain, and with life will change. It's a little fantastical to think about, but if my major pain from my every day life is for the large part GONE, then....then.... the sky is the limit as far as life! I can live the life I've been wanting to live. I can be there for my kids activities, for their awake hours, cook, just show up for life. Never mind that I might consider teaching pre-natal classes again, or playing horn again, but just having that as an option is blowing my mind. Honestly it hasn't sunk in yet that I may have just gotten fixed for good. OK, I still have hip problems, and that might need to be taken care of, but it's not constant pain. I don't know life without constant pain for twelve years now. And this procedure, this might have fixed my gut problems. And the dietary stuff has predominantly worked out my migraine issues, so.....so...... wow. Can you just imagine?

It will also free up Robert to do his PhD that he has wanted to do. There are dreams in the Klein family that have been on hold for years because of my suffering. I'm sure the kids have dreams, too. I know they do, and it involves having an un-sick mommy. Can you imagine.

Let's imagine together..... the future, for the first time in may many years, might look bright.

(I just wish my first cousin didn't have cancer, and my 98 year old aunt wasn't suffering, but I can only pray for them and hopefully spread the wealth of health).

So again, let's imagine together.

Saturday, July 13, 2019

Life is good, healing is miraculous.

I won't set off metal detectors anymore! Almost all my staples are out!

Yesterday I got amazing news from my surgeon... my healing is way ahead of schedule, and I can go home after my appointment next week!! We were originally told we'd need at least 30 days from surgery to stay put, and only then would we re-evaluate how the healing is going to see when I can get on a plane and return home. Well, We haven't even come close to 30 days, and he is so pleased that he said if I needed to I could go home now (!), but ideally he'd like to see me next week before I go. So yesterday the medical assistant took out almost all of my hundred+ staples. She left about 6 or 7 in still, just in the area where there is the most tension; where he worked most to cover up gapey with muscle and skin. That, unsurprisingly, is the part that hurts me the most from everything he did. But it will get better, I know and believe that now. The recovery has been tremendous. What a total free gift from Hashem. Proper healing, ahead of schedule. I could never have guessed that this would be the case.

me and my surgeon, Dr. Margiotta, and his physician's assistant Lauren,
who has been so very helpful throughout this whole time.

And you know what? I have had no PTSD whatsoever this whole time. I mean, gapey was messed with big time, and I had no PTSD. I think that's because I had such a great preparation for six months beforehand, at the psych hospital and day program that was helping me heal my PTSD. I think it all played a factor in my amazing healing.

So we are terrifically grateful to be going back home in about a week and a half. We'll be there for a week before Dov's induction into the army, which at first we considered the possibility that we might miss the whole thing if healing wasn't going well. I have so much gratitude it's unbelievable, really. I miss home so much.

Having said that, we have done some very meaningful things while we've been here. You'd be surprised what you can accomplish even being in a wheelchair. (I can't walk more than 5 or 10 mins max at this point, and my doctor said that is a lot and don't push it). Robert has wheeled me all over this city! We went to the 9/11 memorial museum which was very poignant. It had videos of survivors and first responders telling their stories, plus many artifacts and personal tributes to individual people. From there we went to "Ground Zero", where the world trade center towers used to be, and we saw the "Freedom tower" as well. Came home exhausted from all that!

On another day we went to a local museum here in the Lower East side, talking about how this one particular community center assisted with childbirth, and general the needs of the poor and ill immigrants living in the squalid conditions of this area. It was done so well that by the end I wanted to leave a donation for the place! It still operates as a community center for arts, soup kitchen, and general reaching out to needy community members.

Then came yesterday... the day I got all (most of) the metal armor taken out of my abdomen! Definitely a landmark day for more reasons than that; I finally, for the first time in my life, went to the top of the Empire State building! Yes, I grew up in New York, and never went there. (I've never been to the statue of liberty either, but that will be for another time.) It was wonderfully exciting, **but** unfortunately a rainy day. There were no lines, though, so at least that! I got some great pictures from up there in the clouds, but one bad thing happened... taking pictures in the rain broke the screen of my phone. I'm so, so forlorn about that. I just basically lost communication with the world, you know? We are so connected to those phones! Good thing I have this blog and my laptop! :)

So, after buying some obligatory Empire State building souvenirs, we went out into the rain (totally unprepared, without umbrellas etc) and on the way back to the ferry we decided to stop into the hospital where my surgery was because we had left some personal medicine there. It took over an hour to get people to search for us where my meds could have gone to, and in the end they were nowhere. I was cold (air conditioning after being out in the rain) , tired, and in pain (remember, staples had just gotten taken out earlier that day), and it was getting really late in the evening. I was getting very cranky. Then we went to go to the ferry to get back to the Lower East Side where we've been staying, and it left the dock without even opening the dock for people to board!!! And there we were in the rain, getting quite soaked to the bone. We then took a cab back home. I was wet, cold and cranky when we got into the apartment with our friends. Immediately, though, they cheered us up! It was wonderful! They were so happy to hear our good doctor news, they said some Psams (tehillim) to praise G-d, and gave me a blanket for around my shoulders, and then a cup of mint tea appeared in my hand. Ahhhhhhh, how quickly moods can change, thank G-d!

So it turns out that our remaining plans are that on Tuesday of next week we are transferring to my dear friend Devorah in New Jersey (we grew up together). We'll be there for the week (with a ride back into Manhattan for my Thursday appointment for the remainder of my staples hopefully), and then take off for home around the 23rd or 24th. We haven't rearranged our plane tickets yet. That's for after Shabbat. I miss my kids and my home so much, I can't *wait* to get home!! Surgery really makes one want to be home. And the apartment shuffle, although it worked out, has been trying in many ways. But the end is in sight! As a gift for our gracious hosts, we have shopped and prepared all of the Shabbat food for them and us together. The lady of the household went to the botanical gardens as a getaway. Yay!

OK, getting ready for Shabbat now, so everyone have a wonderful Shabbat Shalom!