Thursday, November 10, 2022

More meaning in life

 I'm OK. 

After my last blog post I got a lot of messages and calls from concerned friends and loved ones. I didn't mean to scare y'all, not to worry, I'm OK. Things are tough sometimes, but isn't it that way with everyone? C-PTSD makes things harder, for sure, but I'm doing relatively OK with that this week.

I still haven't heard from the doctor in NY. It is quite frustrating, I sent them both (the doctor and his secretary) emails reminding them that I exist and am here waiting for the doctor's evaluation of my MRI's. At the same time, I haven't called. I don't feel like calling. I might in a little more time, but as for now I don't feel like it's so urgent. I am not going to go anywhere for more surgery any time soon. I've had enough of surgery, and I am putting up with the pain. That is my decision. I just can't bring myself to do more surgery, so it almost doesn't matter what he says. I mean, I'd know more when he answers me, but I am not running to do another surgery (after the 14 that I have gone through). I am just at my wits end with going through surgeries. I know I need a hip replacement, but as of now that is not slowing down my life a whole lot, even though it hurts chronically. I can still get to shul every Shabbat, and that is a gauge for me of when I'll do the hip surgery. I can even sit on the floor (for a short period of time) with my granddaughter, so that is also a gauge. If it comes to a matter of stopping me from living the way I would like to live, then I'll do it. The hip replacement, that is.

As far as if anything is amiss with my belly surgeries, and maybe the pain is coming from there, less and less I think that. I am pretty sure all the pain I feel is coming from my hip problems. But that, of course, is what I am waiting on my NY doctor to evaluate for me, if there *is* anything amiss in my belly surgical areas.

In the meantime, my hand, where I broke my thumb, still hurts. I am very worried that this is going to become chronic pain, too. Next week I start occupational therapy for that. I hope it'll help me. It's been a long time, I think it should have healed by now.

I am finding myself needing more meaning in my life. I do the jewelry making which is good for me, and I love, but it doesn't hold anything really meaningful for me. I need to be a doula more. I have a couple who is due to give birth in January, and I'm happy about that. I don't want to put off doing my doula work until I get a hip replacement. If I was going to do it (hip replacement) soon, I'd put off doula work, but deciding to wait on that makes me want to get more into doula work. I am also not so confident, though, that I can do it with the pain I have. I'll see how it goes with this couple in January. I would take other work if it came my way, though. I can't really yet advertise because at the moment I don't have receipts to give, I haven't opened a file at the income tax office stating that I am an independent business, so I can't give out receipts yet. I think I am going to go with a third-party type of giving of receipts. I have to get on that project. I can't really work much until I have that squared away. But I am here stating that I want to work as a doula more. If I put it out to the universe, work will come my way. That's always been my experience. I just wish I trusted my body more. It's not only my hip, but my thumb (for massages) also. I wish my body didn't hurt like it does. Quandary.

Back at the home front, things are good. Thank the Good Lord. My kids are all in a good space, and my granddaughter just turned two. We went to Bet She'an for her birthday a few days ago, that was precious. But it is such a long trip, and by the end of the night, I am in intense pain after all that driving. It takes three hours to get there, we stayed for about three (or four?) hours, and three hours back. Grueling for anyone with pain to deal with. But worth it. They are such a special family.

I'm going to go now, I have a birth-preparation class to give tonight and I have a few things to prepare. 

Don't worry about me, things are ok. Kind of.

Tuesday, October 18, 2022

Not light reading

There are times that I don't feel like I have C-PTSD (complex Post traumatic stress disorder), and can feel pretty normal. Then there are the other times. I am finding myself fighting my demons these days. Depression comes in from I-don't-understand-where, and I am down for the count.

We just had a whirlwind of holidays here in the land of Israel, all of which are good, hard, and challenging in equal portions. I also just got a cast off my hand, which was on for three or four weeks... I lost count. It was for a suspicion of a broken thumb, after I had fallen down at my gym. The floor was wet and there was no "wet floor" sign, and I slipped right there. I think the cast was on too long, but the hospital didn't give me an earlier appointment at the orthopedics clinic. Now I am dealing with pain in that hand as well, yay me. I am supposed to do occupational therapy with it, so we'll see how that goes. As of now the hospital hasn't yet given me an appointment to start the OT, but I am back at my job with the jewelry making, and that uses fine motor skills, so that should help.

The holidays we heavy, and good and hard all at once. We hosted many people for big meals over the three weeks, we were also guests by friends, and we also got to visit many friends. Best of all was the visit from my son Dov and his lovely wife and delicious baby! It was all very social. Close to the end of all the holidays, when the title of the holiday has the word "happy" in it (Simchat Torah), I got really down, and whether or not it is related, I got some sort of virus which dragged me down as well (I'm still dealing with that virus or whatever it is).

I got down about the stuff I am used to getting down about, and I couldn't stop it in it's tracks. That "stuff" is that I feel aimless, without motivation, without drive, and I mourn my losses again. Those being the losses of my music career and my doula career, both which were booming when I got NF, when it all came to a halting stop. I admit that I have not touched my horn in over two years, and I am also not advertising for my doula work. I don't feel I can commit to a couple to support them throughout their birth. I don't have it to give these days.

The pain persists. It makes me not want to do anything. I think that is the biggest downer and the reason I have no drive, no motivation. I haven't yet heard from my surgeon in NY about his opinion about the MRI's. It's now officially been a long time. I finally wrote to him today to check on the progress of that. I hope to hear from him soon. But I also know that timing and such things are in Hashem's hands. I'll get his opinion when I am supposed to get it. I am not rushing to do any surgeries any time soon, even though I am in pain. I am just blocked about going ahead with another surgery. I can't do it. I think I need my other hip replaced (three orthopedists have confirmed that), but as I don't have my doctor in NY's opinion yet, I am not going ahead with anything. It is more than that though, I think that even if I had his opinion, I would be blocked about going forth with another surgery. I just don't want to do it. I have had enough. I am at an impasse with myself. More surgery seems insurmountable at this juncture in my life. I have had 14 major surgeries, some of them quite intense, was in an induced coma, and have limped on one side or the other for many years. My body is screwed up. My soul feels screwed up too. I haven't been in any sort of therapy for well over a year, and that's OK with me. I think I've just had it. If it comes to me needing surgery and the choice is no longer a real choice, I will probably need more therapy to wrap my head around it. I have just been through too much. And I miss my life from before NF. It comes down to that, I think. I miss being driven and successful in my careers, and I miss the "me" I used to be before all the medicalization of my life.

I have been having nightmares again also. I don't know what causes them, but they are nasty. Messes up my whole night, and sometimes the day as well. I wake up yelling, and get totally freaked out, and need time awake to decompress. For a week, the week of Succot, my husband was sleeping in our "upstairs sleeping succah" (to be differentiated with our "downstairs eating succah"), and I wasn't, so I was alone in bed. I had a major nightmare while he was outside and had to process it alone. I'm glad the holiday is over and he's back in our bed. The nightmares are from the PTSD of course, the content of them makes that abundantly clear for me. They get me when I'm down. The Cannabis used to be good for deterring them completely (like magic, I am telling you), but I unfortunately got sensitive to it, got headaches every morning, and had to stop taking it.

I hope this new year on the Hebrew calendar will bring me peace of mind and body, although that feels too far to grasp right now. I pray that the pain will chill out without surgery, and that I return to at least one of my previous hobbies/ careers. I'm only 54, it's too early for me to give up. But I can tell you that giving up is my constant shadow.

Monday, September 12, 2022

The entire plastic surgery department

Accompanied by my dear friend Miriam, I went to the team discussion at the plastic surgery clinic last Monday. I'm pleased to say that it wasn't as bad as I imagined it might be. Although there were at least 15 or more men in that room (yes, all men), all crowded around a conference table, I wasn't shaken. Much. It freaked me out a little when the leader of the pack, the head of the plastic surgery unit, asked to see my scars, in front of the whole crowd, but according to Miriam, I handled it all very well. I indeed lifted my skirt and showed off my badges of honor. I was mainly talking to the head of the department, and blocked everyone else out. The one doctor I was hoping to meet, I noticed him from his picture on the internet, well, he was texting the whole meeting, so he obviously wasn't interested in my case. Nobody introduced themselves.

Mainly the discussion was about whether or not they think they can help with my pain. They looked at the evaluations of the MRI's, and weren't interested in looking at the discs. The main upshot is that they wouldn't do anything surgically. They admired the great job that was done by the NY surgeon, and said they have nothing to add to that. They agreed that the most likely scenario is that I need a hip replacement and that is where all the pain is coming from. I'm still not convinced that there isn't a plastics component to the pain, because I often feel it radiating from (or to?) my belly. But they said that going in again could cause more damage and not fix anything, so they'd leave well enough alone. (although *is* it well enough?)

Of course that is what I got from four other surgeons I saw four years ago, before I had the surgery done in NY. All the surgeons I saw because of the pain I was having all said they couldn't help me, and wouldn't go in there for any sort of surgery. Until I met the NY surgeon (through the Mayo clinic visit) who actually helped me tremendously. So I wasn't so surprised at this team's opinion of "do no harm", don't go into a surgery without a clear and present goal. I suggested some goals, like to take out the remainder of the mesh that is still in there, take down the adhesions and clear away scar tissue, but they weren't supportive of any of those ideas. I asked them, if I were to have hip replacement surgery, could they come in during that time and clear out scar tissue while I am having the hip replacement on the same side. No was the answer to that. They wouldn't do any procedures on me, and wouldn't do a plastic surgery during an orthopedic procedure. Again, I am used to this response. It was only different with the NY surgeon, and he actually fixed many problems at the time. I am eternally grateful for him and his ability to take the pain away for two and a half years. BTW, the pain I have now isn't at all like the pain I had then. At that time, four years ago, it was all in my belly, and I suffered tremendously. I was suicidal, actually, because all the doctors here told me they can't help me. So I saw the NY surgeon as my savior, in a way. He gave me my life back. The pain I have now isn't so clear that it's coming from the belly, or even the left side of the belly like I sometimes think. It may all be from the fact that I need a hip replacement, I'm just not sure. When I needed the right hip replacement (two years ago), the pain was very different than what I am experiencing now. That's I why I am questioning what would be helpful in this case.

Now I await the response from my NY doctor. He received my MRI discs last week. I'll write to him if I don't hear from him in another week or so.

In the meantime, I am not emotionally ready at all for hip replacement surgery. I have a block against it in my head. Surgery sucks so much, and I've been through more than my share. I may have to wait till the pain gets unbearable, or until I can wrap my head around yet another surgery. I just can't get myself to make the phone calls necessary and get a date for hip replacement surgery. Anyway I'll wait until I hear from my NY doctor before I do anything.

In the rest of life, things are good, thank Gd. We are coming up again on Rosh Hashana, which I can't believe is right around the corner. I may pull out the wheelchair to get to shul and to various friends houses during the holidays. One day of walking to and from shul often can put me in pain for the rest of the day and the next, so I'd like to avoid that. I hate using the wheelchair though.

You know, pain is so all encompassing. and constant pain is debilitating. It's just about all I can write about today. When you see me, we talk about many other things, and I don't usually show that I am in pain, though, which is still a blessing. Life is a blessing.

Wednesday, August 31, 2022

post-MRI happenings

Today I put the discs with the MRI's I've done into the mail to my New York doctor. Paid a pretty penny for express mail, and it's out.

Ironically today as well, I got a phone call from the plastic surgery department at Soroka hospital, where I first had the NF. I'll explain why...

When I went to them over a month ago to request that they write a referral for the MRI's which my NY doctor ordered, as my health fund required me to do, the doctor I saw that day had a condition in order to give me the referrals for the MRI's. That condition was that I come to a "team discussion" of my case after the MRI's. Today is when they called me to give me the appointment for that team discussion. That will take place this coming Monday at Soroka, in the plastic surgery unit. The purpose of this is to discuss the findings of the MRI's (which I don't even know yet), and I think to try to convince me to keep my care in Israel. I think the health fund doesn't want to pay again for a surgery abroad, and that's why they required me to jump through hoops to get the MRI's done. So the condition that the Be'er Sheva plastic surgeon put on the referral for the MRI's is that I hear what the opinion is of the surgeons here. While there is never anything wrong with hearing another medical opinion, I don't want to go to this team discussion in Soroka. That isn't the place where I would move my care to. I wouldn't undergo another surgery in Soroka unless my life depended on it. That being said, there is a doctor in Soroka plastic surgery that I might trust, but haven't met him yet. He has very good ratings and comments on the internet, and, although I wouldn't make this a rule of who I can trust, he is religious. I'll meet him at this team meeting. I hope they don't use the platform to tell me to go to the pain clinic, and put me on the defensive again (like the plastic surgeon did when I saw him to ask for the referral for the MRI's). Unfortunately Robert can't be with me for that team meeting, he's working at that time. I might see if I can take a friend but I'm not sure.

I don't like the idea of being in the room with a bunch of doctors, and me, the patient, it sounds intimidating. I've done it before, at Ichilov hospital for the PVNS, and it was stressful. Also, being in Soroka plastic surgery is stressful. I do know some of the doctors there, and it was from a time that I got PTSD, in part, from them. But since I agreed to this condition, and the health fund paid for all the MRI's, I do have a responsibility to go. So that's on Monday. Wish me luck.

Other than all this stuff, things are going ok. Pretty stable. The pain isn't getting worse, but unfortunately not better either. I can walk to shul on Shabbat, and I usually do, but I pay for it the rest of the day and often the next day as well. Last week I decided just to stay home and not deal with more pain. But missing shul takes out a big part of my week in many ways.

I am still making jewelry every morning and enjoying it. Here is a picture of the last set that I made: (it's not in great focus, sorry)

My birthing work is kind of on hold at the moment. I am willing and ready to give birth preparation courses, but not being a doula for the time being. Probably not until after I recover from whatever surgery is looming in the near future. I'm just not physically up to being there for a birthing woman. I am not actually sure if I'll ever get back to it. I can't see that deep into the future.

Thank Gd the kids and Robert are all doing fine. My youngest is starting 11th grade this year, it's a big year of national graduation competency tests (bagrut). He's a great student, he'll do fine, b'ezrat Hashem. Shifra, my 19 year old, is just starting her national service being a paramedic at Magen David Adom (red star of David, like the red cross paramedic and ambulance service), so that's an exciting new start for her. She just moved into her new apartment in Jerusalem today! Ya'akov is staying with his program of working as a gardener in and around Be'er Sheva, and going on hikes and trips with different groups he belongs to. Dovi, my oldest, married, with my beautiful granddaughter, is also starting a new job this year, teaching in the Yeshiva he learned in, in Bet She'an. It's really awesome for him, he's starting to teach Torah and gemorrah to the first year students. It's really quite an honor. My daughter in law is in college learning for her teaching degree, and my little granddaughter is very busy being a 1+1/2 year old and delightful. Thank Gd, family is stable and thriving. I don't have enough thank you's to Hashem for that. Onward and upward.

Monday, August 22, 2022

Medical therapist

This Thursday is the last of the MRI's, this one of my hip/thigh. The last ones were of my lower belly and pelvis. This is the series that my doctor in NY asked to see. I finally got it all approved by the health fund, and it is almost finished. Then, I send them all to the NY doctor, and he'll give me his opinion about what might be going on inside me to cause the pain I have. 

It is the opinion of the orthopedist that all my pain is orthopedic, ie: I need a hip replacement, and that would solve all my pain problems. As I think that is true, I think I do need a left hip replacement, I am not sure if there is a plastic surgery element involved as well, ie: the NY doctor's realm. That is what I am waiting to hear. It'll be at least another month before I get his opinion. I have to send the MRI's by express mail, and then wait for him to go over them and get back to me. Thank Gd there is no emergency here, and I can wait. I can't make a decision without the other opinion anyway.

What has been going on in my head recently is that I am not emotionally ready to do another surgery. My last surgery was my right hip replacement, in 2020. It was a very painful surgery and recovery. VERY painful. Now, it's mostly fine. I do have some issues with it when I walk longer distances, but overall it's good. I just can't wrap my head around yet another surgery. This would make #15 if I get my left hip replaced. I am just fed up with surgeries and recovery, fed up with pain in general. I know that now I am in pain anyway, that I most likely need another surgery to get out of this pain; the physical therapy didn't solve my issues. I am doing it all anyway still, all the physical therapy, and going to the gym three times a week (in a normal week). But I am still in pain.

I *hate* that I am going to have to go through another surgery. HATE IT. I am not at all emotionally ready or willing at this point. I have just been through too much. My social worker thinks I should see a therapist to work through this, because I am going to need surgery soon, and I have to incorporate it into my well-being. There are specific therapists here that deal with medical circumstances. I saw one for a while a long time ago, (hi Shuli!) and she helped me tremendously by using EMDR. I might go back to seeing her, although she is in Jerusalem. I'd like to see someone here in Be'er Sheva, and I have a few recommendations from my psychiatrist who I highly respect and feel good with, but again, I just don't want to DEAL. I wish I had no medical issues at all. But, I do, like it or not. One never gets used to pain. It always sucks.

Last week Robert and I got away on a mini-vacation together to Jerusalem in a fancy hotel. It was SO nice. We did Jerusalem things, like a museum, botanical garden, art and craft fair, and a 3-D historical film with moving chairs ("minheret hazman" for those who know...), Mamilla, etc. It was nice just to get away without any kids and enjoy Jerusalem and each other. I was in pain for not an insignificant time through it all, and that was a drag. I just can't walk distances anymore, it hurts too much. I know I need the hip replacement, and that in the end it will help my quality of life, but in the immediate future, I am not ready to deal with another operation and all the pain that that entails. Also we have to find out from the NY doctor if he thinks there is a plastics element to the pain as well (nerve entrapment, or adhesions or something that I don't yet know is happening...). There is still part of the mesh in my belly, and I don't think anything can be done about that; it is incorporated into the tissue too much to remove. If that is causing the pain, (although the pain does seem to be over my hip), I have to just live with it. Or do a procedure that burns the nerve endings that lead to that pain. It's too much to deal with. But I have to deal with it. But I don't want to. But I have to. But I don't want to.

I feel like a 6 year old kid saying "don't wanna!!" I am just so DONE with difficult surgeries. I am also done with being in pain. Ugh. Up against that proverbial wall. I may go and see that medical therapist to help me deal with all this. I don't think I can do another elective procedure without that.