Tuesday, March 21, 2017

Inventory: Emotional and medical

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

I wish I had her as my shrink!

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

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


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

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

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

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

Sunday, March 12, 2017

Medical update

"And all this because of one small elective surgery..."

"Yup", I say.

Met a new doc today. I've been waiting months to see this one, his clinic is constantly backed up. So, since my condition isn't painful or detrimental, in this case, I took whatever appointment they had and waited.

I drove about an hour to see him. He's the ear, nose, and throat doctor that all the other ENT's I've seen about my throat click problem told me I should see. I first wrote about this problem Here.

The ways those guys have to examine things is really so unpleasant.... numb the throat with a spray, put a tube through the nose down the throat to see vocal cords. Then another scope thing to see the esophagus. I coughed, I tried to do what he needed to see stuff for the test. The exam lasted almost an hour.

By the end, he said he's not sure if he can help me. He's also not sure he can't, He's sending me for more tests and also for vocal rehabilitation (I've lost the upper range of my voice since my last surgery a year and a half ago). So, after I get a CT scan of my neck, and a swallow test (which sounds dreadful), I'll go back to him with the results, and he'll see if he can fix whatever "it" is. I've also had a chronic cough for over a year.

So far the biggest thing that came out of it is this: I should avoid any more intubations. (as if it's something I schedule in my day planner on a regular basis!)...
He said that if he can get this dislocation thing fixed, it'd be too fragile to intubate again. If he can't fix it, another intubation could cause more damage. I told him I'm going to need a hip replacement soon. He said to do it under epidural anesthesia. I confided in him after a little bit of thinking it over, that I have been quite traumatized by surgeries, and I didn't think I could do one awake, even if I wasn't feeling anything at all. He suggested other methods of "twilight sleep" + an epidural. He wrote it all down on the notes he was writing for me to take to my GP. He said anytime I may need another surgery, show the anesthesiologist and surgeon this letter.

The med student who was observing with the doctor today really got some interesting things to go learn about. He hadn't yet learned about Necrotizing Fasciitis or strep A....

Another strange thing from Sarah's life of medical anomalies.

(OMG! I was just doing a bit of research to find a picture to publish here, and I stumble on a fact: It is extremely rare, but one can get PVNS tumors in the throat. Anywhere there is synovial ducts and fluid, actually. Know that PVNS is a rare disease, no matter where it is, but I thought it was only in shoulders, knees, or hips. The doc did say he saw nodules today, and tumors from PVNS in the neck must be very small... in a few articles I read they called them nodules. WHAT???????)

OK, I am not going to put up pictures for you of anatomy of the throat and the cricothyroid joint that may be dislocated in me. Instead, I will put up pictures of two of my kids dressed for Purim yesterday. It's much easier to handle than thinking that the PVNS may be growing in my throat.

I had a red-haired girl in a black wig being a bad-luck black cat, and a Brooklyn basketball player. :)

those are *my* boots...

thanks for the cool basketball duds, uncle Peter!

We made it through Purim 2017. I layed low because of being in the year of mourning, and that suited me fine.... layed low, 
not including the round trip drive to the doctor and the difficult exam.

Monday, February 27, 2017

Post Traumatic Stress Disease... the gift that keeps on giving

Recently I've joined a few on-line support groups for people who survived NF. Sometimes I forget that there are going to be things specific to the fact of having been through this particular nasty disease and it's ramifications. One such ramification that nearly everyone relates to and talks about is the aspect of PTSD afterward.

This is what is going on with me...
I'm having a recurrence of the PTSD. It took me a long time to identify it, and there are other things in the mixture that are affecting what is happening with me these days, but that is a big factor. I believe it is stemming from being with my friend Sabrina while she was dying. There are many gory details that I don't need to, or want to get into here, but what I thought I could handle went into hiding in my subconscious for a few months and has been eating away at my emotional state, my sleeping, and at this point just about every aspect of my living. My PTSD was so bad after I had NF, a year later (2008) I was hospitalized for three weeks in the psychiatric hospital here in Be'er Sheva.

PTSD is insidious. You don't know that it can be responsible for depression and sleep problems, among other things. My depression has been getting so bad lately, I cannot enjoy anything. I mean, I can enjoy things on a surface level, really enjoy being with friends and in social situations, but darkness lurks for me when I try to go to sleep. I thought it was my sleeping pills not working anymore, but now I realize it is the PTSD. I haven't had it this bad for a long time. And, it took a few months, since Sabrina passed away, to manifest so strongly so that I could clearly see it. Same thing happened after I had NF; at first I even went back to work with birthing couples, and even playing horn in the orchestra for a few months. Then, at about the six month point of after NF (physical wounds still not even healed completely) I had a break down of sorts, and checked myself into the psychiatric hospital at my psychiatrist's advice. That was my introduction to psychotropic medicines and sleeping pills.

I had no idea that my PTSD could ever get that strong again.
Well, it can.

Also, problematic here is the fact that my medicines have changed drastically over the past few years, and I haven't had any psychiatrist at all in my life going over it, giving input. I've kind of used my neurologist for that because of needing to deal with the migraine problem, but one hand did not speak to the other. I went off the Fentanyl, went off Lamictal (which was specifically for PTSD), and am now on a large dose of Depilept for the migraines, and my GP raised my Cymbalta. All of this with no input from a psychiatrist. So, it's time for that.

I plan to go back to the one who I last saw at least three or four years ago, because she is the last one who knew my case. Robert tried to call her this morning, but she wasn't in today. It is urgent. We will try to get in to her tomorrow. If not, maybe they can give me someone else. She specializes in PTSD, though. We are even thinking about the possibility of another hospitalization, but are very much hoping on getting a hold of this as out-patient. The depression and sorrow are sucking away my life, I can no longer cover it up. I'll get help.

I know that Hashem (God) is always there for me, stretching His hand out to catch me when I am falling. The challenge is to stretch mine out to grab on and feel my will and life-force again. It's in me, but quite buried. Buried under hospital nightmares of the past... which are still quite present for me.

Friday, February 17, 2017

An update from hibernation

The wind and rain has been so cold, and the sun rarely warming anything during the day. I have been taking the opportunity to hibernate. I am so cold, always. I wear three layers to everyone else's one or two. I put the heater on, but it takes too long to warm the rooms. I've always been more of a summer/heat/beach person.

I'm stying right in here, thank you very much.

But you didn't come here to read about the weather in Be'er Sheva. I just don't know how to start writing. I'm going for calmness, equilibrium, and quiet spaces. Things have been possible lately. I say it that way because during the time period that Sabrina was getting sicker and passing away, things were impossible on every level. I stepped away from everything after she died... well, after my father (who had pneumonia) left after she died.... well, after Ya'akov's hernia surgery after she died.... you get my drift. No more drama. I almost couldn't bear to see the hospital any more. My soul needs calming. It's been through so, so much. So I think I am able to give it calming now. I am able to step away from, or avoid loudness, or take it in small quantities if I am up to it. Like shopping with my 14 year old girl. The stores today's girls want to go into... makes me crazy with the loud music and perfumed air. She knows I have a half-hour limit there. I'm so old. :)

I am sorry to report that I am in pain all the time... again.
That hip surgery I had October 2015? It's effects are gone. Osteo-arthritis in full bloom. Very painful, practically every step. I have been following a low-inflammation diet, taking cartilage supplements, and... it's back anyway. At the time my orthopedist said he didn't know how much time be "bought" me before needing a hip replacement, but now we know.

Thing is... hip replacement surgery? Now?
Next month I finally have my appointment with the throat/swallow guru of the country to finally [hopefully] correct my dislocated cartilage in my throat from that last surgery. I have waited six months to see this guy, my throat clicking away with each and every swallow.

Now I need to do another surgery, and intubation, and all the pain of recovery and physical therapy and no driving and and and and and??? (actually driving is already getting hard for me... I feel it creeping into my life- cutting out quality of life things because of pain. I've been here before too many times.)

I can wait, it's not an emergency, of course. The arthritis gets worse, but not that quickly. But I know I will not go on pain meds, so I don't have much to rely on as this is worsening. I just am doing less. Even playing ping-pong with Azriel kills my hip, and that's really not so strenuous. But he's so cute and loves it so much, I hate {{again}} having to say no to him because of my physical or emotional shortcomings at any given time. The kid barely ever knew me not sick.... or I should say, as strong as I was before I got sick in 2007.

Shabbat is approaching. I'm glad I got to write a bit... thanks for hanging in there with me.
Love from cold and rainy (and hail-y!!) Be'er Sheva.

Tuesday, January 31, 2017

My fight is gone

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

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

I think Gd cries with us when we are sad

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

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

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

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

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

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

My fight is gone.