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.

Wednesday, October 30, 2019

Medical inventory and other stuff

As I sit with my laptop I realize I am writing fewer and fewer blogs. Life has gotten to that even keel that I always prayed for when things were crazy. When I was sick all the time and going through hoops to get the health care I needed. There were some very very crazy times in there, we all know. I see other people on my NF support group going through it all now. I'm telling you, this reconstruction surgery I had four months ago was like magic. I feel so much better than I ever felt physically since I had NF. I still get twinges and pain from the surgical areas of muscles, though. It reminds me that I'm healing still. This week I thought I had a UTI (urinary tract infection). The urine test I did at the health clinic showed possible signs of a UTI, so we decided to do antibiotics. It was a one shot antibiotic that is supposed to cover you for three days, specifically tailored for UTIs. But then yesterday we found out that the culture came out negative, so I don't have a UTI. It must be pain from the surgery I guess. I pray I'm not getting more adhesions already; that is partially what caused my two years of pain before the surgery. They do come back after surgery, but I don't know how soon. So we are leaving it alone for now.

My legs are each having their problems... each a different problem. Right leg is suffering terribly from restless leg syndrome. It's always jumping at it's own volition. I can control it if I really concentrate on it, but it doesn't last long. It makes it hard to sit for a long time, including driving. It doesn't interfere with driving, but it is there. The worst part of RLS for me is with the horn playing. I need to concentrate on what I am playing, and the leg is just jumping around. It is very uncomfortable. The worst part is that I can't play with the horn bell on my leg (right leg), I have to play with my horn up, off the leg. That is fine for a while, but I don't like always having to practice that way, it is slightly easier to play with the bell on the leg. But as long as I have this RLS, I can't use the leg for anything. I think the RLS is from a medicine I take, which I recently cut in half, but the cutting in half hasn't made the problem easier. I'd like to cut the medicine out totally, but I have to talk to my doctor about that. I have an appointment in two weeks. In the meantime, my leg jumps. The Cannabis at night helps it to calm down so I can sleep at night, but I can't really take it during the day, it makes me spacey.

The other leg, my left leg which has been through so much, is having big time hip problems. I've had two surgeries on that side, and it's hurting again, like all the time when I walk. I think I need another MRI, but I couldn't get an appointment with my orthopedic oncologist until January! I have to keep calling to see if there is a cancellation, but I'm not likely to do that a lot. It's not an emergency. I pray the PVNS has not returned, that would mean more surgery and a larger problem possibly needing radiation afterward. But I'm going to think positive. I think that the joint is very arthritic and may need to be replaced. I slept with a heating pad on it all night last night and it helped only marginally. Oy.

I am going to be starting to learn jewelry making soon! With soldering and everything. It is a program that I can choose based on my "sal shikum" which is rehab for after my hospitalization last winter/spring in the psych hospital ("The Center for Mental Health"). It's most likely going to be short term, until I start the mechina program which will lead me into another career field. It'll be interesting to learn the jewelry making, and also be a creative outlet for me. I desperately need something to get me out of the house, for the first time in my life I feel bored. Sure there is enough house work to keep me busy every day all day, but I need more. So while I have applied to bituach leumi  (national health insurance) for the mechina program (which is the readiness program for honing learning skills for older people changing careers), it's going to take time before that all goes into effect and I can start. So in the meantime I'll work on jewelry making. Sounds nice, right? I'll even make some money at it, they sell the items we make.

I honestly don't know if I can be a nurse. If I can 1) get through the university level classes in Hebrew, and 2) depend on my body to put in those hours also learning, but also for practical nursing practice. My hip hurts after a shopping trip to the mall with my child, how can I do what nurses do? Unless it was at a health clinic or a private doctor who needs a nurse, that could be easier work. I just have such low self esteem with this all. But my horn playing isn't going to be something I can rely on to play full time anywhere anymore, I've just lost the sparkle that I used to have and the control of the instrument I used to have in my playing. It might come back if I work hard on it, but these days I do practice, but don't enjoy it. I am not at the level that I can enjoy my own playing. It's depressing. And doula work, well, I did take on one client to be her doula in December. That will be a good indicator if I can keep doing births or if I'm left in bad shape afterward. And above all this is that I've always wanted to be a nurse. It fascinates me. I'm just not sure I can do it. But I'm only 51 and have a lot of years to get a new career going, and if I don't do that I'll stay unsatisfied with life. By the end of the mechina program, they will tell me what they think would be a good career path for me based on my work at the mechina. That will also help guide me to what would be the right thing for me.

So along with the weather changing, I am making changes. There are some really beautiful days we are having now, fall is here in the desert. It's a little cooler during the days, and the nights are heavenly. Don't need the air conditioner or the heater. I love that. Let's hope my changes will also be blessed!

Tuesday, October 15, 2019

building bridges

There have been a lot of holidays happening around here, it's that season. We've had lots of guests and have also been hosted. It's been mostly good, thank G-d. It's been a lot of shopping for food, cooking, setting up, cleaning up, repeat. (...and it's not over yet.)

I've also been practicing horn, and also put an ad out for my birth preparation course. I am realizing I can't just pick up where I left off, there are bridges to build. I put ads all over Facebook, and haven't yet gotten any responses. I'm going to have to work harder on advertising. And as far as my horn practicing... oy. There are problems in paradise.

I always dreamed for the time and ability and health to return to my horn. Well, I have those things now, and am returning to my horn, but I sound *awful* most of the time, and don't enjoy myself playing because I don't have the control of the instrument I used to have. I don't have the range I used to have, or finesse. I know that will come with time, but like I said, I have bridges to build. It's not going to come easily.

Also, unfortunately it seems that strengthening my stomach muscles (for playing horn) after my big surgery isn't going to go as smoothly as desired, either. My lower left belly (where Gapey used to be) hurts when I do any strenuous playing-- like working on my high register. I just can't do it, my surgeon doesn't want me doing anything that could cause pain, and this is causing pain. So I take a lot of breaks, but I'm not sure if it's just a matter of time before the pain will stop, or if This Is It, I can only play horn to a certain extent until it hurts, then I have to stop. It's nothing like the pain I had before the surgery, it's just a little sharp twinge-y feeling. But it's pain and it's here to tell me something. Take a break. It could be that with time this will also go away, I don't know. I hope so. I'm not rushing to any orchestra work, I can't, I don't have my level of playing back. But I would like to get to that level again, some day.

It's holiday season so many things have to wait until all the holidays are over. Seeing any of my counselors has to wait, which means the mechina course I am considering taking has to wait, also. That's the pre-nursing school plan course for five months, to hone learning skills again to get ready to go back to school. I don't know if I'm going to do it- nursing school. It seems almost too challenging for me. My kids tell me I can do anything (they are mimicking back to me what I tell to them when they are discouraged), but I'm not so confident. I told them that I say that to them because they are young and just starting out in life. But then my daughter said back to me that if she was 50 and I was 85 wouldn't I tell her the same thing? Yes, I would.... so why am I not listening to myself? I don't have the confidence that I can do this nursing school program. I don't actually have the confidence that I can do anything these days... that's my main problem. That's the main bridge I have to start building- the one that I believe in myself more.

My sleeping is a bit better, but still not what it should be (and has been up until recently). I saw my psychiatrist about the sleeping problems, and she didn't want to change any of my medicines at all, just suggested to use my Cannabis for help sleeping. OK so I've been doing that, and it has helped a bit, but it's not predictable enough. It kicks in at different times (I'm taking the oil at the moment, not smoking it- it makes me cough too much), and isn't a reliable source of a good night's sleep. I have to keep experimenting with it. I also need to ask my neurologist to renew my licence, it's expiring soon. Anyway, that's what I have at my disposal for the while. I guess it's good not to add new pills, and side effects, but the cannabis isn't so reliable either.

My restless leg syndrome (RLS) is acting up something fierce. It reacts with changes in my medicines, or as a side effect to one of my medicines. Robert and I discovered that RLS can definitely be a side effect from a specific medicine I take, so I decided to cut it in half and see if it makes a difference. It'll take three or four weeks before I know if that's helping.

All-n-all, I'm struggling with self-confidence that I can start up anything these days. That's just the stage I'm at I guess. It's frustrating. I got so sick at such a young age, and stayed sick for so long, that starting up anything now seems too hard, but I'm still young. My days are quite unstructured and aside from taking care of the kids my days are pretty empty. I need to build bridges from where I left off my working days, to twelve years later. Not simple at all. Day by day, I'll get better at this, I hope.

Saturday, October 5, 2019

The wake of insomnia in 5780

Some of you look for updates, and I think they are getting fewer and farther between. I think that is overall a good thing, that I don't have huge medical issues to write about, or lots of hard feelings to get out. Truth be told, I feel so much like an empty slate these days that I'm not sure what feelings I have, and whether or not I have to get them out. It's so un-me-like.

One thing I can tell you is that since I went off my sleeping medicine (two weeks ago when I returned from New York) I've had two weeks of insomnia. True, up-all-night-listening-to-podcasts-and-audio-books insomnia. I also did a lot of rummaging through my medicine drawer to find cocktails that would put me to sleep. That is a path I've been down before, and it doesn't lead to anywhere good. Last time I let the insomnia go on for two months (when I had the PTSD relapse last year) and wound up in the psych hospital. I was seeing the writing on the walls here, and was wise enough to talk to my doctors about it. My family doctor was even generous enough to get onto messenger with me at 1am last week and "talk" me through what was going on. (Thank you, E!!)
It really was up to my shrink, though, because she is the one who directed me to go off my sleeping medicine. She felt it was too heavy for me (she replaced it with something that didn't work for me). That's why I went off it and stayed off it, even though I wasn't sleeping.

Damn I wish my body could sleep without medicines. It just seems to not be able to, no matter what I try. But two straight weeks of insomnia (and a small traffic accident in there which gave my PTSD a party for a few days) is nothing to play around with. When I spoke to my shrink finally (not on Messenger at 1am), she said to of course go back onto my sleep medicine, and come in to see her so we can discuss options. Oh, OK, so it wasn't written in stone. That night I took a half pill, and slept fitfully, but slept nonetheless. A full pill makes me too foggy the next day. It may not be the best medicine for me, but I'll discuss that more with my shrink when I see her. But why can't my body sleep without medicine? I've been in this scenario before, it just won't sleep. Not since I had NF and started with the sleeping pills because of the PTSD. Twelve years of sleeping pills, and no memory at all of being able to sleep without medicine. It is what it is. I hope to get the sleeping back on track soon.

Well, with the first Shabbat of the Jewish year behind us and Yom Kippur ahead, I'd like to wish everyone a *healthy* and loving new year! I want to thank each of you for your support here on the blog and off. It's the support that I feel from you guys, the readers, that keeps me going during the hardest times. May we only know true light. The cracks in our souls (our imperfections) is where the light can seep in and heal us. So yeah, may we all know true light and give it freely. Onward to year 5780!