Sunday, February 23, 2020

The soul's time to heal

Well, the dust has settled after the wedding. The young couple is settling in to their new apartment in Bet She'an, and Dov is back in the army during the week. They have Shabbats together, sometimes by themselves, sometimes by her family, and sometimes here with us.

I still have some lumps and swollen places from my fall down the stairs, those are going to take time. I got really lucky with that- it was 11 hard marble stairs, and I went tumbling down all of them, couldn't catch myself. I'm totally OK, thank Gd.

Life these days remains confusing.
One large surgery healed my body... what can heal my soul now? Things are so different than they were before I got sick. I know that is the understatement of the century (for those of you who knew me before I got sick, you know what I mean).

I am playing horn, practicing almost every day, and playing in the Gadera orchestra once a week.
I am also swimming at the pool a few times a week. Problem is that I am not enjoying these things (and I keep getting swimmer's ear). I do them because I have a make-believe checklist in my head of things I have to get done. Also making dinner for the kids; I used to enjoy that. It seems like the enjoyment is out of these things I do. I keep doing them, but it is hard to motivate myself when I don't really get enjoyment out of them. This is part of depression.

I am doing the jewelry making four times a week, mornings until 12:30. I like that, it gets me out of bed and doing something. I need a reason to get out of bed or else I don't get out of bed. (truly- it's not good). I've made three rings so far and am in the middle of making a small round silver box (these things are not for selling, I am still learning. Soon I will make things to sell there). I like the skills I'm learning. Especially soldering.

My health is good. Baruch Hashem. I have a few things to tend to, but nothing too serious. I've never been in this position- that my health is good, and I'm not working at my careers. I'd have to practice a lot more if the orchestra I used to play with is going to hire me as an extra sometimes. They haven't told me that, I just know. And as far as birthing work, I have no motivation. Like I said, nothing in life feels motivating. I have a child who also has nothing going on all day, and I see us as mirrors for each other. He went downhill when I did a few years ago when my abdominal pain got really bad. Now he is stuck in quite a terrible rut, and I don't know how to get him out of it. He just turned 20,'s complicated. I don't want to talk about him too much in the blog. It's not fair to him. But it is a source of *a lot* of heartache for me.

I am still getting used to life healthy. It was twelve years of health troubles, then one big surgery last summer, and now about seven months of being healthy. I still get twinges of pain in my abdomen, especially when I play horn, but it's nothing like what it used to be. And my hips still hurt me from time to time, but I'm taking this stuff for them is really helping. It's a supplement called CetylPure, for joint health. It is really working, my hips hurt less when I take this stuff twice a day. It works on the collagen in the joints. I highly recommend this stuff for anyone with hurting joints, especially from surgeries and arthritis. I am postponing my hip replacement because of it. This supplement is buying me time.

In a few weeks I start the two week evaluation from Bituach Leumi (National health care). I have no idea what to expect. I'll miss two weeks of the jewelry making. It is supposed to be an evaluation to see what career options are best suited to me. Should be interesting learning the results. What are they going to do for two weeks? Must be some thorough evaluation.

To sum it all up, I am still suffering from depression, and complex-PTSD, and I don't know where to turn anymore. I have a decent therapist, and I take my medication. I sleep most nights with the help from the Cannabis. I'd hate to think this is my lot for the rest of my life. I think I need to be busier doing productive things. Isn't that what every human needs, to feel they are a contributing member of society and not just a body taking up space? I feel awful. I gotta stop writing, it's making it worse. I think that is why I am not writing my blog much anymore, it no longer helps me to feel better. This stuff is too deep to write about and feel better afterward. Some things don't have "feel better" solutions. Taking care of my soul (and my children's) is much harder than focusing on my body's [medical] problems that I used to have.

Tuesday, January 28, 2020

Oh what a night!

The wedding was incredible. such palpable joy emanating from not only the married couple, but their friends. There were LOTS of friends there. Half of the Israel Defense Force, and an entire yeshiva of raucous, happy young men, and a midrasha (women's Torah learning institute) of raucous, happy young women. I've never seen in my life so much singing and dancing, and I've been to a lot of Jewish weddings. This young couple is really loved. The music and scenarios are still going through my head. It was truly a magical evening. There is a new home being established in Eretz Yisrael (the Land of Israel).

Sitting with the bride (her name is Achinoam pronounced Ah-chee-no-ahm)
Me & Robert standing under the chuppah

Me & Shifra

Dov and Achinoam under the chuppah

They caught me at a time I'm not smiling... rare that night!

With my two older brothers, Peter and Tom

Shifra, Achinoam, me & Robert
Ya'akov, Dov & Azriel

There are a zillion more pictures, and I might add some more in other posts, but this should give a taste. I have other pictures which are not in my phone so I can't easily get them onto my computer.

It has been a whirlwind week, and I am so happy. I wasn't sure if I'd be able to be on my feet for so long the night of the wedding, but adrenaline kept me up, and dancing! It was a pouring rain night, freezing temperatures, but inside it was [mostly] warm and perfect.

I think this wedding is what I needed to get out of my "funk". I am doing a lot better now, thank G-d. I am so happy for Dov and his new wife, my daughter-in-law. A new era is beginning!
I don't want to write anything else that's not wedding oriented at the moment, I don't want this post to be anything other than the wedding. Just know that I am doing pretty well, thank G-d. I will say that I have a big bump on my head today from falling down the stairs this morning! But I'm OK. There are a couple of other things pending medical tests these days, but I'm not going to write about them in this post. The wedding deserves a page of it's own. Thank you to everyone who is reading who was at the wedding, everyone helped make it extremely special! Mazal tov!

Sunday, January 5, 2020

Keep moving, feeling disconnected

Life has so many twists and turns, what's around the corner is a surprise for all of us. My life has had so many twists and turns that although I got my belly fixed last summer, things are not stable. It's impossible to just jump back into life as I used to know it. It's all changed now. I lost my careers twelve years ago when I got sick.

Having said that, I have been playing horn a lot. I'm practicing nearly every day, playing with the Gadera orchestra (community orchestra, volunteer), and even had a few concerts over Chanukah. I've played rehearsals twice at my old job, but I don't know if my colleague is going to invite me again, time will tell. He said he would, but we'll see. In the meantime I have to keep practicing to be in shape just in case he does call me, but that isn't enough incentive to really keep me practicing a lot. I'm just taking it step by step...practice, play wherever I can and whenever I can. Take a day off here and there.

Taking everything step by step these days. Most tasks seem overwhelming to me, but I am practicing walking through the steps to get done what I need to get done. When I was sick for all those years, I skipped many of these tasks that are overwhelming me. It's hard to jump back into life....there needs to be openings to jump in-TO.

I'm swimming at the gym a few times a week, also putting one foot in front of the other to go to the gym and keep up with that. Nothing comes easily.

My son's wedding is less than three weeks away, on the 23rd of January! I still have some details to take care of regarding that. My boys need shoes still, and a few other things.
I can't get excited about it though. I wish I could. I am fighting deep depression, that's the truth. I am fighting it every day, every hour. Things with one of my kids are not going well, and that is affecting me greatly. They say a parent is only as happy as his/her least happy child... I am trying to fight that.
Mental health is so hard to talk about. It's partly why I haven't written much. There is such a stigma around mental health, I feel not OK writing about it. But I've really been struggling.

I have started the jewelry making class/job. So far so good, if not a little boring right now because I have to learn the trade. Doing small tasks at the moment, there is a lot to learn. This is not forever though, obviously. I am slightly overqualified.

Starting Feb 2nd I enter into a two week evaluation through Bituach Leumi (national health insurance) with the goal of seeing what career choice might be good for me. I am nervous about that, because I haven't worked in so long I don't know what to expect. I have to leave the jewelry making for those two weeks, but that's fine, they work together with Bituach Leumi. I don't know what to expect with this two week evaluation, it sounds very serious. It's a long time, right?

In the meantime I have a huge team on my side... I have a therapist at Inbal (the free psychotherapy for women who have sexual abuse in their lives), I have a social worker who I also see once a week, and I also have a "big sister" sort of relationship (although she's much younger than me) with a "madricha" (counselor, guide, instructor) who I also meet once a week. I have enough support to hold up Brinks. So I have a lot of people in my corner. The rehab package from Biruach Leumi is impressive. And all free. (this is rehab because I spent 6 months last year in the psych hospital between in and out patient.) I am not deeply connecting with them yet, but it is lots of support. If I were to call any of them, trying to reach out if I needed their support, they would be there for me.

Inside the heaters are on and there is usually a tea mug in my hands, and outside I put on my coat and boots and trudge through the cold, rainy nights with my dog, and bundle up for the sometimes sunny, sometimes rainy, always cold days. Robert has had the flu last week and so far this week also. Lets all hope he gets better soon, and that I don't catch it... it's been brutal on him.

I had a touch of bronchitis last week, I'm getting over it slowly. Still a bit of a cough, but less.

Laundry and dinner are calling me to attend to them, then I have to practice... Gotta move on with the day (night). One foot in front of the other and things get done. I just wish I felt more connected to in general.

Wednesday, December 11, 2019

writing again, writer's block exit stage left

I've had writer's block. Not conventional writers block, though the kind that my mind feels confused about what to write about. It is a confusing time in life. I haven't written in a long time.

You know the surgery I underwent last June was completely life changing. It took me out of constant pain. My hip still hurts on a regular basis, but that's easier to deal with than the belly pain I had for years from the mesh in my NF wound area. You would think, on a simple level, I'd be happy-go-lucky, going for everything and anything that comes my way. But it's not like that.

I had a certain identity for the past 12 years. I was sick and taking care of my illnesses that stemmed from NF. This blog every week told the stories of the illnesses I had to deal with, and the frustrations and disappointments because of them. I needed to get out all the hard feelings of what it meant to live a life of a patient. Constantly at doctors, constantly looking for answers.

Now, I don't have abdominal pain. Baruch Hashem.

But I do still have CPTSD (complex post traumatic stress disorder), and it's acting up lately. It's been a year since the reactivation of it, when I had a huge trigger, didn't sleep for two months and wound up in the psych hospital where I stayed in-patient for one month, and out-patient for five months (what I used to call the "coal mines"). Somehow with these anniversaries, the body knows. I've been having flashbacks and haven't been sleeping well. The difference is now that I have a lot of support, I didn't have any (professional) last year. I have a psychotherapist, a social worker, a young student counselor, and a psychiatrist. Should be enough to keep me together, right? I've been horribly depressed without knowing exactly why. Its so hard to confront that and write about it. Mental health has a stigma that physical health issues don't have. I will always have CPTSD, but there will be a time it is not so front and center in my life. It is just very hard now. I'm having a lot of flashbacks. The body remembers.

I am playing horn every day now. I am volunteering with the Gedera orchestra (an amateur community orchestra about an hour away), and this week on Thursday I am playing a rehearsal with the Be'er Sheva orchestra where I used to work. That is exciting (and a little nerve wracking, because if I play well it could lead to more work with them). I am practicing about two hours a day (average, sometimes less), so I am getting back to the level I used to be, but very very slowly. Still sometimes my belly hurts in one specific place from the surgery last summer, when I play horn.

Swimming has joined my activities, I re-joined the gym for that. I decided that it was time to get back to physical activity, but because of my hip problems, the pool is the best. It's a small pool, but I can get a good work out in if I have patience. It's harder for me in the pool than in the gym itself because I can't listen to interesting things on my headphones to keep me going. So it's a little boring, but I do it because it's important to keep the old bones going. Often my hip hurts more that day, although it doesn't hurt in the pool.

The approval from the national health organization for the jewelry making job *still* has not happened. The wheels of bureaucracy run slowly in this country.

Next week is Sabrina's three year yahrtzeit-- memorial of the day she passed away. That is going to be hard. We are having the gathering here at my house for all her friends and family (and her daughter, who I haven't seen in ages).

I am taking more Cannabis during the days these days because of so much anxiety from the CPTSD. It helps a little. Sometimes I have so much anxiety that I feel like I'm jumping out of my skin. Sometimes swimming helps, sometimes practicing helps, but mostly it's just roving anxiety from the CPTSD. My support system is good, but nobody can take away the anxiety. It has to work itself out.

Mainly I feel like I am undergoing a total personality change since that surgery. I know that sounds weird, but that seems to be what is happening. I don't know who I am anymore without the definition of dealing with illnesses. It's a huge thing-- for 12 years I was sick, and I lost my careers (one of which I am getting back into), and now *poof* I'm no longer suffering (except with my hip sometimes), and it left a void. I know that must sound strange to you, but after so long, it leaves me with uncertainty about my days and my future. Not that my future was so secure when I was sick, but it gave me a goal; to get myself better. That took lots of energy and time. Now I have that time and energy and I have to find a new goal. I had a meeting with the national health organization (Bituach Le'umi) last week about the mechina (preparatory program for further higher education), and it only starts next fall, I missed the beginning this year. They did however decide to give me an evaluation to see what my strengths and weaknesses are to see if they can guide a career choice. But if my horn playing picks up a bit maybe that will be enough for me. For now the birthing work is on a back burner. I can do the birth preparation course, but I have decided not to do doula work for the time being. It is too physically straining, and I just had major abdominal surgery, and need a new hip. As far as nursing, I'm not as sure as I used to be. Things are up in the air, and that creates anxiety also.

There are always lots of tears at my therapy appointments. We are talking about my abuse from childhood and the ramifications on life. It is my hope that finally getting this out into the air and having my therapist help "hold" the big black rock inside me, that it won't rule me, and the next trigger won't starve me of sleep for two months and mess with my head. It's a long road though, and I never really dealt with this in any therapy I have had. It's time.

I've made up for not putting out a blog in close to a month. This got longer than I had in mind.
I have a feeling the blogs are going to be fewer and fewer, but like always, it's according to my need.
Now I'm going to get ready to go to the pool.

Tuesday, November 5, 2019

Hip replacement

As we know, my belly pain problems, although prominent over these past few years, are not the only issues in this war-torn body. My hips are another source of problems.

In this case, we are talking about the left hip, the one that had the PVNS in the joint the same year I had NF. I think I am the only person in the history of the world who had NF and then the rare and destructive tumor disease in the same year. The orthopedist said they are not related. I don't know about that. The PVNS was not part of the lawsuit, that much we know, so the doctors from our lawyer must have also thought it was unrelated.

Be that as it may, that joint where the disease was is not doing well. I am looking at a total hip replacement, sooner rather than later. (But not before the wedding in January!)

I just saw my orthopedic oncologist on Sunday. He looked at my x-rays, and told me the joint is very badly damaged, and that is what is causing me the pain. Last time I saw him he gave me a steroid shot that helped for months with the pain. This time he said it's a different story, it's not the bursitis, it's the joint worn down. There is no cartilage in that joint, I'm walking basically bone-on-bone. Yes, that would hurt, and it does. He ordered an MRI to see if the tumor disease (PVNS) is back in the joint- it has a 50% recurrence rate. He said, either way, even if the disease is back, he'd recommend a THR (total hip replacement). I can no longer go with arthroscopically removing the tumors because the joint wouldn't heal well.

How do I feel about all this?
I don't want more surgery, like ever. I have been through enough to cover my entire community ever needing surgeries. I hate surgery, and recovery. But I also hate being in pain, don't we all. I feel it's not fair, I've been through so much. Maybe I'm feeling a bit sorry for myself, but it's just too much. I just had a massive body and mind-altering surgery only four and a half months ago, I was just beginning to feel free from more surgeries, than this came up. One day a few weeks ago I did Tai Chi (which I do frequently), then with my hip already hurting I took Shifra shopping in the mall, and that was it- I was in so much pain I could barely walk. I started sleeping with a heating pad on my whole hip, but it didn't really help. Nothing helped, and I won't take pain pills, or patches, or anything like that. But maybe I should just take something to get through the wedding, I don't know. It's all so confusing for me, all my feelings about medicating pain, surgeries, pain in general. I have had such a long history with pain of all kinds, from mild to the most horrendous pain I could ever imagine (when I had NF). I am DONE with it. I just want to live my life with no surgeries looming over me. I have been thinking about my future for the first time in a long time, and now I feel like that needs to again go on hold. What is the message here? Why do I have these things come up all the time? What am I doing wrong? I am just beside myself with dismay at needing another [serious] surgery.

Everyone has stories about their parent or relative or friend who has had a hip replacement and it was the best thing that ever happened to them. I have heard many stories. My father had a hip replacement when he was about 80, but his was not done correctly and he continued to walk with a limp for the rest of his life. He had scoliosis, and because of the curvature of his spine, they made the hip the wrong size. Instead of going in for a revision, he left it that way. He wore one shoe built up higher than the other, but it didn't work to stop his limp. I know that I won't have that particular complication, I don't have scoliosis thank G-d. But there can be other complications, we don't have to name them all. I've already been through one of the worst that can happen (NF), and that can happen again. There is no immunity against that once you've had it. But a million other complications can also happen.

I've already been through three hip surgeries- two on the left (the one which hurts now), and one on the right. I know what it is like to recover from them.

And even if the complications don't happen (I didn't have any complications with this passed surgery, although it was huge), I don't want more surgery! I feel depressed about it, but with my hip in pain, there is not much choice. I wish I could see the divine roster that G-d holds about what is in store for each person. I just don't understand why I keep having all these trials. I can't seem to move on from this medicalized life. I can't do nursing school in this condition, although I haven't been so sure about nursing school anyway. I haven't been sure about anything these days.

I did two trial days at the jewelry making place, and I am interested in continuing. Since it is through the rehab "umbrella" in the national health insurance, I have to wait three weeks to a month before the approval (and insurance) to do this job. That is a bummer, just to sit at home and wait, but that is how it works there. That is a job with much less responsibility than going back to university to learn. I can take as many days off as I need, and it is only four days a week in the mornings until 12:30. That is a job I can do while I need another surgery, it's also mostly sitting. I'll start there as soon as the approval comes in.

So I'll keep you posted about what is going on with my hip replacement saga. For me it's as much emotional as physical. I just can't believe that I am looking down the barrel of another surgery. Even though I know it will ultimately be for the good (no more painful hip), I wish there was no pain or other surgeries to worry about at all. I enjoyed that while it lasted.

I hope I don't sound too complain-y. I don't want to complain. I am just a bit forlorn at this prospect, on the heels of what I just went through not even five months ago.

Everything at the right time, I always say. I guess I have to be consistent, and maybe this is at the right time. Maybe Hashem wants me to be free of problems after this successful hip surgery takes place. We can hope. We can pray.