Sunday, December 9, 2018

The sh*t hit the fan

So much has gone on since the last post, it feels like dropping a bomb here to write about it. But write about it I will.

So that week after all the MRI's?
HUGE migraine on Shabbat. Was it from all the contrast agent? Could be. I am so sensitive to everything. That will be a theme here in this post....
Since I didn't have any medicinal cannabis baked into [gluten free] brownies or cookies, and I can't smoke it on Shabbat, I was out of resources beyond the over-the-counter stuff which is useless most of the time. By the time Shabbat was over, I was in **baaad** shape. We wound up in the hospital around 10 pm, after I was vomiting and could hardly see. I hadn't had a bad one like that in a very long time. Mostly because I can use the Cannabis and it usually helps. I got the steroids and Phenergan, and went home with a low-grade headache and very drowsy. Sunday I stayed in bed still nursing the remnants of the headache, like usual.

Monday I was well enough to travel the three hours up to Dov's yeshiva for his parent's evening/Chanukah celebration, and bring him home with us afterward for his vacation. It was lovely, and I was exhausted the next day, but it's good I could go. Last year at the parent's day at his yeshiva, I couldn't go, I was in far too much pain. His rabbanim were so happy to finally meet me, and I, them.

Tuesday I decided to start my migraine medicine again (Topamax). The headaches have been coming on more frequent and harder, and although I want to stay off medicines, I also want to stay out of pain. Call it self preservation. My family doctor OK'd it, but I didn't check the dosage she recommended. I had some Topamax left over from last year when I stopped it (to see if it might be a factor in my abdominal pain, which it wasn't), so I just found that bottle and started it. 50 mg, Tuesday, 50mg Wed.

On Tuesday night we had dinner with dear friends in the neighborhood. Then we watched a movie. My head was cotton-feeling, kind of dizzy, just not at all right. I thought maybe it was the new sleeping medicine I had just started.

So that new sleeping medicine-- I mentioned last time that I asked my doctor for something because the PTSD relapse has been keeping me from a good night's sleep... or sleep at all sometimes. Nightmares wake Robert up with me screaming, then he wakes me up, and then I'm up, freaked out, with nobody to process the dream with because Robert goes right back to sleep (rightfully so). So I don't get back to sleep. It happened so much that my driving was getting sloppy, and I even took off the mirror from our new van in miscalculating distance. So that was why I asked for a stronger sleeping medicine.

Although I had never heard of it, I didn't Google it, I just took it, and it gave me a wonderful night's sleep, no nightmares, the first night I took it. I was thrilled. I kept it up for a week or so, then the nightmares started returning, and therefore my wakefulness, so I took the whole pill instead of half, as per doctor's instructions.

Well, Wednesday found me early in the day in a cotton-headed strongly dizzy feeling. I needed to do an errand in Tel Aviv, so I took the train because I didn't trust my driving. I went to Tel Aviv, and got increasingly more and more depressed, even crying, alone there on the city bus on my way to where I was going. I didn't understand what was going on. People were looking at me concerned, but I tried to keep my head turned away. I did my errand, and got right back on a city bus to come home, I was in an awful state inside my head-- I felt physically awful, was moving very slowly but using a very high energy output, and my head just wasn't right. By the time I was on the train back, I started to feel a tremor coming on in my hands and legs. I thought I was cold. I was also still crying.

I got home and deteriorated rapidly.
It was Shifra's 16th birthday (!), and we were going to go out for dinner, but I couldn't do it. I thought I needed dinner immediately. I didn't eat anything my whole day traveling, and I thought I was shaking because of that. Robert kindly made me some dinner, and as I was eating, the rest of the family went out to dinner to celebrate Shifra's birthday. You *know* I had to have been feeling really bad to forgo that.

As I stayed home, I got right into bed. Things were NOT RIGHT. I started shaking uncontrollably, and crying uncontrollably. It was so unexplainable to me. I was literally having convulsions. I didn't want to get Robert back home because I didn't want to bring down Shifra's party, but I did get my doctor on a chat with me. She was kind enough to go through it with me, and try to figure out what is happening. Honestly, I thought I was having a psychotic break. I had really crazy thoughts going through my head. I was  s c a r e d. After a while in our chat, my doctor asked me to tell her everything I'd taken in the last 36-48 hours. In a shaky voice with disorganized thoughts, I left a voice note for her about what I had taken, including the new sleeping medicine at the higher dose, and the Topamax and the dose. We discovered the dose of the Topamax I started was too high (totally my mistake). Then I discovered that I had a bit of a temperature. My doctor then thought another direction, Seratonin Syndrome. Bingo. The new sleeping medicine (Trazodil) was not a good mix with the only medicine I was taking beforehand, Cymbalta. In fact, very bad combination. Potentially deadly.

Finally Robert came home and he spoke with my doctor when he saw my condition (shaking, convulsing, crying uncontrollably). We had gone through a list of what medicines do I have at home, and hit upon one that could act as an antidote. I wanted desperately to stay out of the hospital, that's not news to any of you here. So I took a Clonex, and within 20 minutes the shaking calmed down, and I could rest. A few hours later I took another Clonex to help me get to sleep, together with my regular sleeping medicine (*not* the new one) and I slept all night.

But when I woke up, as soon as I started to brush my teeth in the morning, the shaking started again. It was so scary all over again. I didn't know how long these effects would last. I took another Clonex, and it calmed my nervous system down. By this time I had of course cut out the Trazadone as well as the Topamax. I don't know if I'll go back on Topamax or not (starting at the right dose), I have to clean out my system from this huge crash that happened. Today is Sunday, and I am now no longer getting the shakes (thank G-d), but I've had a four day lingering headache through this whole thing. Low level, but persistent. I can't take Tylenol/Excedrin, all the over-the-counter things- it gets me into medicine overuse syndrome. Been there before- constant migraine.

Basically we know I am wildly sensitive to ALL drugs and medicines. I hope to stay as far away from them as possible. I need to get this PTSD problem under control. I finally have an appointment with the psychiatrist (who I saw 10 years ago at the psych hospitalization) in a week. He is a PTSD specialist, and head of the PTSD department. I'm praying he can lead me out of this. It's really the source of how all this started... the relapse, the sleeping problems and nightmares, needing more sleeping meds, getting increasing migraines.... it's all connected. Let's pray I can get this straightened out.

There are still other "fires" I have to put out and can't even get to them because of these more immediate "fires". More on those another time.

Aside from this horrendous stuff, there have been good Chanukah times with the family, Baruch Hashem. I was hoping for more, but taking into account the circumstances, I think we did pretty well. We went to an escape room today, escaped from a nuclear apocalypse. :) Then out to a beautiful dinner, the whole family together, and our wonderful nephew (my children's cousin) Noad joined us, also!
We had dinner with friends one night, and Robert & I saw a movie together in bed one night. That is also a rarity.

Only Dov, I think, knows about the shaking and convulsions.... he took me to the doctor the second day it was happening. We managed to shield the other kids from the harsh reality of what was happening to me. That's a score, considering how much they've been through regarding worrying about me. Going to the hospital for the migraine last Saturday night was hard on them.

I'm still withdrawing from the medicine mix-up, but I hope it'll get better and better within a week or so. It's been a pretty insane time, though. I'm afraid to take anything new.

Mostly, I have to get the PTSD under control. Then I can deal with my other issues. Everything at the right time.

Let's pray I can sleep tonight. Last night was pretty awful.

Thursday, November 29, 2018

Three MRI's and a funeral

(...oh, and a memorial gathering at my house for my dear friend Sabrina, may her memory be blessed. But that made the title too long)

It has been a crazy week.

One MRI (brain) was at night after a funeral I attended of a friend and wonderful member of our community. She was only 67... cancer is evil. She was a dynamic, friendly outgoing woman who I was quite friendly with, and she also taught my youngest son English on a US level when he was in second grade (Israeli schools don't teach English until 4th grade). Her nieces and nephews came in from the US for her funeral, that's how special she was.

Funerals take a lot out of me, but are so vitally important to the soul. That of the departed as well as that of the people who cared about the departed. All-n-all, though, yeah. I'd rather attend a birth.

The MRI that night was a brain one. Of all the MIR's I've had (and that's a LOT), I never had a brain MRI. I've had brain CT's when my migraines got bad, or switching neurologists, but not an MRI. This one was for the pain doctor in Ichilov hospital who is trying to find a diagnosis for my abdominal pain crisis that happened last year, which [mostly] went away when I got the steroid shots. He said redoing the shots is fine, he can do that any time I need. But he feels we are missing a diagnosis. I'm not sure. We'll see. He ordered brain, spine and neck MRI's, and those are all done now.

The brain MRI is really hard because the noise is at your head. I always had abdominal and hip/thigh MRI's, and *those* are also loud, but the brain one is, well, at your HEAD. The ear phones they give you weren't enough for me. Too much jack-hammering, alien abduction, car alarm and machine gun sounds in my head. Not good for the PTSD. Not to mention the cage over my face... if I opened my eyes I immediately got claustrophobic. Glad it's over. No results yet.

The Ichilov pain doctor also ordered a nasty looking test called EMG/NCS of upper AND lower extremities. That test is not passive at all... electrodes and needles testing muscles-- FULL BODY. I'm not enthusiastic to do that. But I guess I will. Definitely bringing somebody with me for that day.

Then yesterday was very busy... it was Sabrina's (z"l) second year memorial. I was on my feet all day, literally. Only stopped when the actual ceremony started, in my house, that evening, with about 10 other people joining us. Then I sat a bit, but I was really wiped out. I spent important time at the cemetery (for my second day in a row) with Sabrina's daughter and her whole foster family, visiting her grave and cleaning it, being with everyone (especially Tessa, who I miss terribly, but is doing very well, thank G-d), standing, walking a lot. Then down town to get the memorial gathering foods together... along with a few errands I had to do (walked a lot then, too-- couldn't find close parking even with the handicapped parking tag). Food shopping (which I don't usually do, it's very taxing), coming home to prepare. I'm happy to do it, but it was quite a hard day. That's life.

We had a lot of sushi and beer because that was one of the things Sabrina and I did often- either go out for sushi and beer or order to her apartment sushi (and drink beer). I thought she'd smile on my decision. Made me happy. But you know, cleaning the kitchen, arranging everything, I was just non-stop on my feet. Every time I thought I could take a rest another thing popped into my mind to organize and prepare. Thank G-d everything turned out fine, and Sabrina's daughter had a wonderful time playing Barbies with Shifra. (my daughter, who's almost 16, had lots of fun too... this was *not* charity work to play Barbies with Tessa!! We heard their giggles and banter in the living room!)

By the time I cleaned up and got myself into bed, it was midnight. My legs were nearly numb, hips throbbing.

But I forgot to say something important, --but I want to ignore it-- but I can't...

Last night is the second time since I got the steroid shots that I felt that same abdominal pain return. The first time was Yom Kippur, in September, also when I was on my feet all day (and helped a mommy with a nursing newborn long into the night). Then it didn't come back until last night, at about 11pm while I was standing at the sink washing dishes... I felt it. It's like a demon feeling when it comes. I think I have to be careful about being on my feet too long. It goes away when I rest.
But I don't want to have to be careful, you know? 
But it's there, lurking. I guess it's a good idea to try to see if there's a diagnosis, but I'm not convinced there will be. And again- doing that nasty nerve test is involved. Weh.

But wait, not done yet-- I said three MRI's and a funeral, right?

So not only did I get to sleep over exhausted, in pain, and late last night (with thoughts of Sabrina & Tessa swimming around in my head), but I got up at 6:15 this morning to head to Jerusalem for my two MRI's that the New York surgeon wants to see in order to know if he can do the reconstruction or not. I've had the referral for these MRI's (abdomen & thigh- the whole area of NF's path of destruction) since August, and because of the  special directions the surgeon gave, no hospitals in Israel wanted/could do it for me. He wanted 1mm picture cuts the whole NF area (large area).

So when we got stuck in traffic on our way to Jerusalem this morning and I called the hospital to inform them, the secretary was snippy with me. She told me that I must be early (as if traffic is in my control) because the doctors/ technicians don't understand my MRI order.

Excuse me? You've had my referral in your hands for over a month... the HMO just told me *yesterday* that they will pay for it, so I didn't know if I'd be coming today, but the hospital had my referral for a long time, and sent me a date for the test. *Now* you're telling me that the directions from my New York doctor are complicated?

We got there, a bit late, then the guy who puts in the IV took a LONG time to get a good vein and set me up. (pet peeve- being a full-time patient makes your veins bad- must have EXPERT phlebotomists!!). Then comes the doctor and the technician. They're telling me about the MRI machine's capabilities, this is impossible, we can't do 1mm cuts, that's only done for brain MRI's and this area is so much bigger than a brain. I said maybe program the machine to do what it can do for a brain and aim it where we need? No, I don't know what I'm talking about (true, but sometimes not knowing things helps one think out-of-the-box), this is impossible. I told them of the other hospital that said they can absolutely do it, but only privately (mucho $). Then the technician tells me she spoke to that [private] hospital and they said they have the same machine (apparently standard all over Israel) and can't do it any differently than what they can do. That's not what they said to me, but I was stuck... the HMO already agreed to pay for it, this was my only shot. I was already gowned-up and feeling vulnerable, with an IV tube sticking out of my sleeve.

In the end it was the longest MRI I ever experienced (well it was two, actually)... well over an hour. One cool thing that I never had before was classical music piped into my ear phones! First Mozart, then Chopin (or Liszt?), then a Baroque period Bassoon concerto chamber orchestra and a harpsichord. My mind reminisced about my university days in Boston University, the orchestras I've played with, a typical day at Boston University for me, the apartments I lived in, the guys I dated during that time period. A trip down memory lane. :)

The doctor and technician were proud of themselves when they freed me from the tube-- they succeeded in doing 3mm cuts throughout. OK, dudes, thanks, but my doctor asked for 1mm cuts. Unless I go privately, though, I won't be getting that. I'll send this to New York and see what the surgeon says. If he says it's not good enough, I'll have to consider doing yet another one (two).
That would be much longer time in the tube not moving. I'd need a sleeping pill, honestly. It's not easy. The doctor in Jerusalem today told me it'd take three hours if it's possible for the machine at all. But I need the New York surgeon to be *absolutely sure* of what he may be getting into, and absolutely sure of his plan every step of the way. It's a very scary procedure, this reconstruction surgery. I don't know if I'll go through with it. If it all works out perfectly, it could be VERY promising for my abdominal pain issues and skin graft issues. But I know, and you know, that surgeries don't go perfectly, regularly. What I know I went through, and what I witnessed Sabrina suffer through her last year and a half because of surgeries gone wrong, and what I have seen on my NF support group, I know TOO MUCH. I've seen too much.

OK, I'll back up. I don't have to make that decision yet. I'll have a Skype conference with the New York surgeon after he receives the disk, and we'll be wiser.

Oh, I think I didn't tell you-- here's a good reason *not* to check email before you go to sleep. I did last night- on my exhausted night after Sabrina's memorial- checked my email quickly. What popped up? "On this day last year. See pictures of this day last year!" I think it's from Google+ or something. I clicked. The pictures were from the last day of sitting shiva for my dad, when my brothers and I, standing together, blew out the week-long yahrtziet candle while standing in the living room of my late parent's house (now sold). That's what I needed after Sabrina's memorial and such an intense day?
I sent the picture to my brothers, a reminder to them, too. (for their privacy I won't post it here)

That's how I fell asleep last night (with my new sleeping medicine, thank you, Dr. E!!)-- with thoughts of Sabrina z"l, Tessa; my dad's death, selling their pretty house where I grew up, the works.Then the MRI today and I'm BLOWN.

Good thing Shabbat is coming. I think I'm going to rest a lot.

It's good preparation for Chanukah next week! I've been taking these amazing Torah classes and learning some beautiful and mysterious things about Chanukah. The kids have their winter break from school/yeshiva. Oh wait- next week on Tuesday we have to travel three hours to Dov's yeshiva for parent's day, and drive back the same day, but taking Dov with us back home for his winter break. I think I'll be re-fueled by then. But vacation time-- all offspring home-- family doing things together-- it sounds great, but I'm so, so exhausted. And still dealing with pain and PTSD.
I have to get it together. Hashem, give me strength.

It'll all be OK. There is such goodness in the holiday of Chanukah, and such inherent strength built into it spiritually, And the kids love it. And it's over a week, together-- rare these days! It's all good. B'ezrat Hashem, with the help from the Maker of the Universe.

Thursday, November 22, 2018

troubling times

I'm still here.

Not writing much because I have no new news, which can sometimes be OK, but in the middle of a PTSD relapse (which started about two weeks ago, I wrote about it in my last blog entry) it's not so OK. I have been externally mostly functioning, but internally not. That can only go on for so long... especially when I'm not sleeping much. The sleeping problems are a direct reflection of the PTSD.

It's actually come to my attention recently that I probably fall under the category of "complex PTSD", or C-PTSD.
I am seeking help for it. It may be another three weeks before I get an appointment with who I feel can help me the best, but that is 'the system'. Three weeks is good, actually. I spoke to that therapist today, after not receiving an answer to my email I sent about 5 days ago. So I need to go through the process of getting the referral and payment from the HMO, sending it to the therapist's office, etc. But just know I'm not just sitting around letting it eat me away.

I've started the four MRI's that have been ordered-- two by the NY surgeon who may be doing the reconstruction surgery (if I choose to do it), and two by the pain doctor here in Israel to try to diagnose why I was in such pain in my abdomen most of last year. I had the first of the series a few nights ago-- yeah, night. Didn't get into bed finally until almost 1am. It was a very loud, very long one. Loud because they only gave me one set of ear phones, not the foam ones to go under those. It wasn't enough (especially when you're already suffering PTSD). It was like I was in the car with the alarm going off constantly, and a jack-hammer at the sidewalk next to me, and an alien abduction all at the same time. And it was long-- longer than usual (remember, I must have already had at least 30 MRI's in my life, maybe more). It was for neck & spine. In the middle of the test, the machinery stopped, I thought (hoped) we were done. But no, the technician came in to tell me that he's sorry, he needs a small break for a technicality, he'll be back soon. I don't know if he needed the bathroom, or whatever, he said it was a technical problem. All I know is that was at least 10 minutes of me not being able to move my body into any comfortable position without the test going on. I was stuck in the white tube. He came back and all the noise started up again... he said he had to redo the test from the beginning, he's sorry. Annoying. But at least it was without the contrast dye, so I didn't feel sick to my stomach and headachey afterward.

Waiting on results from that.

Fighting another migraine today.... they are happening frequently, but not at the strength that they used to be when Robert would take me to the hospital, vomiting, and nearly blinded. But it's so frequent, it gets me down. I went to a wedding the other night... my first public party in over two years because of being in the years of mourning, first for my mom, then my dad. The wedding was fun, but I had a budding migraine beforehand. I had to decide whether to drug myself up and try to go, or slip into bed and do stronger medications and call it a day. I compromised-- I did mildly strong medications (I was driving), and got gussied up (even put on make-up!) and went. It was a good decision.

But it's hard to get back into the public world after over two years of mourning. I have such mixed feelings about it. I miss my daddy tremendously. Tremendously. This time last year we were sitting shiva for him, in the house I grew up in, which no longer is in the family. Thanksgiving came and went last year, even though I was technically in America, there was nothing to celebrate.

Lately I'm just not feeling well, in general. It's physical as much as emotional. We're experiencing some very trying times with one of our children, and that weighs heavily on me as well. I pray our counselor can help navigate us through what is for me very murky waters. That, together with my physical limitations and constant pain, well, sometimes it all comes together in a not very elegant picture.

Oh, I'll end with this thing that has been sticking in my head this past week, although really not at all contributing to my PTSD thankfully. Just a heavy thing that is on my mind.
Most of you know about the bandage-ripping-off trauma I suffered at the hands of my plastic surgeon when I had the skin graft surgery for NF, right? I'll reprint here for you the CaringBridge post Robert wrote about that immediately after it happened:

Sunday, May 20, 2007 4:04:00 PM

Today's news is very positive, though there's much to talk about. But first just this: Sarah is coming home tomorrow!!! We are so excited and thankful, and also a bit apprehensive. But mostly, we're just thankful: thankful to HaShem, to the Soroka medical staff, and to all the family members and friends who have supported us throughout this ordeal. With that thanks given, I do want to share the ordeal we had just this morning, if only to underscore how even with great progress there is still a lot of hard work and pain ahead. The day started with two instances of classic hospital insensitivity to patient pain, a topic which in my opinion deserves appropriate legislation vis a vis patient rights. This morning the doctors woke Sarah up and removed her donor leg bandages and the debridement wound bandage in order to inspect the progress and teach interns. Unfortunately, they were quite callous, not administering any pain killers after a night of sleeping, and not warning her of the impending intense pain. Just afterwards, Sarah called me in pain and in a desperate mood, and I got out as fast as one can with a toddler and baby to feed and dress (and bathe after a diaper blowout!) and drop off at their respective child carers. When I got there, Sarah was still in a lot of discomfort, but after about half an hour, she was ready to eat a little, take her antibiotics, and then shower before having her staples (used to reinforce the grafted skin) removed. We were worried about that procedure, but the attending nurse did an excellent job, patiently and caringly extracting some 89 staples in about 15 minutes. Only a handful caused pain (Sarah is mostly numb there as most of the nerves have been cut), and even that pain, though strong, passed within 10 seconds. Now it was time to put on the new dressings. Unfortunately, the aforementioned callous doctors left the donor leg with the bandages strewn across the wound, and so they got stuck, making it impossible for Sarah to stand up without acute pain from the pull of the dangling bandages. She eventually managed to get up briefly and transfer to a wheelchair, and thusly was she showered. That went OK. But then nobody warned her that the first dressing change for the donor leg burns for about 30 minutes like "a blow torch being waved up and down" the length of the wound, as Sarah described it. Narcotics take about that long to kick in, so the Percocet she then received on request couldn't rescue her from the intense suffering she had to endure. Why isn't there a standard procedure in the plastic surgery ward to administer a narcotic 30 minutes before bandage changes, just like in Surgical Ward A at the same hospital?? I posed this question, perhaps a bit more diplomatically, to Sarah's surgeon, and he shrugged in a "hmmm, that's not a half-bad idea" kind of way. Hopefully they'll institute that policy in the future. Anyway, Sarah's is doing much better now, and after a visit from an acquaintance who also got necrotizing fasciitis after a hernia surgery at Soroka (in 1994/different surgeon), has overcome her apprehension about coping at home. The 1994 NF victim lost all of his lower stomach muscles and part of his lower chest, was hospitalized for a longer period, and then on top of all that contracted bacterial meningitis, damaging his right hemisphere and leaving him with left-side paralysis. After 3 months in Soroka, and 6 months in the Loewenstein Rehabilitation Hospital in Raanana, he recovered full use of his left side, and is active and healthy today. Sarah learned a lot from this story, and especially that she's fortunate to have not had more damage, and that she should mimimize her risk of infection by coming home tomorrow, even if it means not having nurses and doctors on-call around the clock. And then there's Hilary, Sarah's midwife-nurse friend, who'll be helping us with checking and dressing the wounds. So we'll be fine. G-d willing, tomorrow I'll post a description of Sarah's homecoming!!! L'hitra'ot, Robert

It turned into a huge trauma that I had to work on (Shuli, you helped me through that with EMDR! Do you remember?). Having that bandage ripped off, the whole scene and details around it were very, very traumatic. I hated the plastic surgeon for that.

So, this weekend, my friend Hedva told me something very shocking that happened in July with him, and I hadn't heard of it. Here that is:

That was my surgeon... so, maybe he wasn't playing with a full deck the whole time?
I feel bad for his wife and two kids.

There but for the grace of G-d go I.

Tuesday, November 6, 2018

Lots of things are "off", but I'll get back on.

I just need to talk.

Things have been pretty crazy. I'm not at liberty to say much about a huge issue that has pervaded my week, but suffice it to say it has thrown me for a huge loop. I'll be OK, it's going to take time... it's something that triggered my PTSD in a big way. It's not enough that the steroid shots were messing up my sleep, now this has seeped into my dreams (nightmares), and conscious living as well. I have support, but at the moment it's not enough. But I'll be OK.

I've also had a stomach virus... not a big bad one, just enough to mess up a day (well, 3 so far...). No fever or achiness,  just digestive imbalance. 

Even with these challenges, I got to the gym yesterday, and had a really good workout. Five kilometers on a recumbent bike with decent pedal tension, and awesome pool laps. 

Then, even with the PTSD issues horrendously raging, I baked carrot muffins, put up sauerkraut to ferment, made a good dinner, drove kids around, and got to my Torah class at night.

But by 2AM the migraine was unreal. I couldn't sleep because of the PTSD, although I was exhausted. I had been hoping to exhaust myself enough that I'd sleep like a baby, but that theory didn't hold up. I was up almost all night (as some friends who got messages from me can attest to!), and the migraine was the worst I've had in many months. I think the PTSD got my blood pressure high, and that was the pounding migraine I was feeling. I thought I'd need hospital drugs. But with the magic of Cannabis and some other select pharmaceuticals, I slept most of today, and woke up with the headache at about a "4" on the Richter migraine scale. Tonight, after all day in bed, I'm a bit calmer, and the headache, although not gone, seems at bay.

The report on my hip / femur is that I think the steroid shots helped a little. It helped with the direct hip pain, but my femur still hurts. It feels like a little gerbil is gnawing away at it. I will schedule the MRI's as soon as.... as soon as I can, physically, emotionally schedule them. I am still trying to schedule the one from August from the New York surgeon-- it is causing big problems in the HMO because of the surgeon's stipulation of how he wants the MRI- with 1cm picture cuts through the whole NF abdomen area and upper thigh. That is the only way he can know if he can proceed with the reconstruction/ mesh replacement or not. The HMO can't deal with the special order, though, and for three months I have been trying to schedule some hospital, anywhere in this country, to do this for me. I have one that will, but the HMO doesn't want to pay for that particular hospital. It's exhausting to keep up with. I have calls about this issue at least every other day. This is why I haven't yet scheduled the MRI's that the pain doctor in Ichilov referred me to do. I have to get the first one secured, then move on.

What I am trying to stick to is going to the gym at least twice a week, my Torah classes also twice a week, and aiming for balance. 

With what happened this week triggering the PTSD, that was out of my hands. When pain levels rise, out of my hands (including migraines). But just like I have been aiming for since the first month recovering from NF, I am still aiming for balance. Maybe I should give up on that aim and just accept it all as it comes? I wind up having to do that anyway.

Thursday is the one year date since my father passed away. That's a big one for me. 
I hope he's together with mom, wherever they are. That's all he wanted.
What we want in this world, well, that's not usually what we get.
But in the afterlife? Who knows....

Sunday, October 28, 2018

Steroid shots; I'm going for temporary

Looks like steroids are a way of life for some... and I'm among those in the ranks. I don't love the notion, but they work. I know it's a temporary fix, but I'm going for less pain in my life. It doesn't address root problems, but I can only do what I can do.

Last Thursday I was at Ichilov hospital in Tel Aviv to see my orthopedic oncologist about my left hip pain. I was going through my checklist of what the pain could be from, and after ruling out osteomyelitis, PVNS was next. I had that 10 years ago, and underwent a few surgeries in the hip because of it. It has a 50% recurrence rate, so I had to go check that out.

The orthopedic oncologist said he'd take a look at my MRI's that I have to do in the next few months from various other doctors, but he was almost 100% sure that what I am suffering from is bursitis of the hip. He offered to do steroid shots into my hip right then and there, and after thinking about it a little bit, and discussing it with him, I went for it. Even though steroids can lower immunity, and even though I have an open, active infection going on right nearby where those shots were going, the infection being in my skin graft. The orthopedist wasn't concerned about that infection... that concerned me. But I went for it anyway. We will go to great lengths to be out of pain. At least, that's where I've come.

The shots hurt like hell. In the Mayo clinic they were administered into my stomach wall muscle after a local anesthetic was given first. Here, it was straight into that hip joint with the needles. Two places. The rest of the day I was in intense pain, could barely walk. I slept with a heating pad on my leg, and it was a bit better the next day. Shabbat was a little better yet, and today (Sunday), I actually got myself to the gym to get working again. It hurts, but I do think the steroids are helping already actually. The injection points look pretty clean, I think I'm OK. There is one guy on my NF support list who got NF through a steroid injection into his hip. But you can't live in fear.

Interesting outcome is with the open wound on my graft- it seems to have reacted positively to the steroids, and overnight it formed a decent, tough scab. Usually it scabs, but after a shower, the scab comes off and it oozes again. I have been cleaning it like four times a day from gook. But after the steroid shots into my hip, it dried up and formed a durable scab. How interesting, right? It's been dry for three days now... life is full of surprises! I know that the staph infection in that area isn't gone, steroids don't kill infection, but not having an open wound is a good thing.

The first night after the steroid shots I didn't sleep *all night*. I didn't have that effect after the stomach steroid shots at Mayo. I was just wired awake, no matter what I tried. I've been making up for that missed night since then, headachey and tired a lot. But like I said, I got back to the gym today, did 5 km on the bike at a decent resistance, and a lot of weight training and stretches. It's hard work.

I am in pain in my hip now, but it's tolerable. I'll turn on the heating pad again when I go to sleep.

In the meantime, I saw good friends on Shabbat, and celebrated Dov's 20th birthday (!!) with a home-made cake. First home-made birthday cake I made in a long time, baruch Hashem. It was a gluten-free carrot cake, and it came out great! We had a little family party for him last night.

I hope I'm entering a new phase in ability... if the steroid shots keep warding off the pain, who knows what I am capable of! But it's gonna take time. I'm tired... a lot. But not giving up. Not giving up.

Missing my father on his would-have-been 88th birthday. I had a good cry Friday night, not even realizing it was his birthday. My soul knew, though. I just want to pick up the phone and talk to him, joke around like we always used to, tell him he's the best and wish him a happy birthday. In a few weeks, we will have closed an entire year after his passing. Hard to believe. I miss him terribly. There was never a gentler soul in the world.

I'm not ready to stop grieving him, as per tradition after the year is over. Well, not really "stop grieving him", but go back to resuming all the "normal" things one does when they are not in the year of mourning. Going to live music concerts (I miss those), buying new garments, going to public parties. For me, it's been over two years that I have been basically out of the swing of doing these things. My mom died, then after her year of mourning was finished, four months later my father died. It's been pretty intense. I'll get back into activities as I feel I can. I just keep making paths around the big hole that is in front of me all the time, and I go on. Sometimes I fall into that hole... the hole of losing both my parents in what feels like one-fell-swoop. Hard to incorporate.

Happy 88th in Gan Eden, Dad. I love you and miss you.