If I had a nickel (or shekel) for every time someone said to me "I wish I could take your pain away"...
well, money wouldn't help these problems anyway.
Nobody can take my pain away. Dr. F is doing his best, but it hasn't happened yet. I have had days here and there of amazing improvement, but somehow it always goes back to pain. That's where I'm at now. Pain. Abdomen.
But you know what is actually worse than constant pain?
The eroding of a really great relationship. I'm talking about what, in my blog titles I call "the state of the union". My marriage.
I have to write, but without going into too much intimate detail. I just have to write. I have to let others know that illness takes it's toll everywhere and anywhere it can.
It makes relationships unequal. It's been this way now for ELEVEN years. And we've only been married for 20. The first 9 were us working hard, buying our house, having four babies and living extremely sleep-deprived but good lives.
The second half of our marriage, where we are right now, has been insidiously undermined by illness and hardships that most people will never understand, for 11 years. Our kids are all 11 years older. They are all more independent. We've done our best within an almost impossible set of circumstances. We've had a lot of help from our friends (that's putting it mildly... without our friends I can't imagine where we'd be now. I just cannot imagine). Neither of us have much family here, and the family we do have were also very busy with building their lives and raising their kids.
Nobody talks about what happens in a marriage/family when one partner is always (or nearly always) not well. It's an imbalance in huge proportions. Both partners are overwhelmed with their burdens... one in pain or not well (with all the family's needs in mind while they are helpless to effect changes), and the other taking care of the kids, the house, the paperwork, money issues, shopping, driving, and everything in between. My kids started doing all their own laundry at a pretty young age (Azriel is the last holdout with that, he still doesn't do his own, it's time I pushed him to do that. I have wanted to spoil him, or keep him sheltered more from the hardship that is our family. He's my "baby", and I am guilty of spoiling him).
When the ill partner is the female, things are even harder. Men are not natural caretakers, women are. It is well documented that in marriages where the female is the ill partner, the rate of splitting up is much higher than in marriages where the man is the ill partner.
No, Robert & I are not planning on splitting up. Just to put your mind at ease.
But things are really really really really hard. (cue: tears. me. right now. lots and lots in recent days/weeks.)
I can't remember the last time we had a date night. I just haven't felt well in so long. And he stopped thinking of planning them. It's always pain... body pain or headache pain. Or pure exhaustion. Or all three.
We had a Shabbat all alone three weeks ago for the first time probably since we had Dov (almost 20 years ago). Was it awesome? No. Life is not perfect. BY FAR. But we did manage to have it be good somewhere from the middle of Shabbat and on. Havdallah (the end ceremony at the departure of Shabbat) had us dancing romantically together.
Fridays have been awful, though. I often come into Shabbat with deep circles under my eyes from the crying and hardships from Fridays. It's been this way for a long time.
The dark circles under my eyes don't seem to ever vanish.
I need things a certain way. I can't produce it all myself, I don't have the strength to do it all. Over many years I have learned to give up on much of what I thought I needed. I couldn't do it, so it had to be OK not getting done.
But I'm getting better now, and the imbalance is blaring. I'm getting better, but not better enough. I'm getting healthier, but not healthy enough. I absolutely need things a certain way, and it must be unilateral if others in the family don't care about those things. There are lots of mean, nasty things that come out of my mouth, especially on Fridays. Why especially Fridays? Well, often everyone is home, and Shabbat is coming, and it is the culmination of all frustrations from the week. Last week, if we didn't have guests coming to sleep over, I might have left. I certainly wanted to leave. I don't know where I'd go, but I was in a BAD WAY. Even when the guests came, I couldn't greet them, I was in too terrible a state. I was crying for hours and hours. I finally met them, with red-rimmed swollen eyes, apologizing for not being available sooner. I managed to put everything aside to welcome the Shabbat Queen, sing at the table, bless my kids, and honor Shabbat. But immediately after, the sadness came storming in again.
Things are not good. Not good at all. As I said, I'm getting better, but not better enough. I'm thinking that the rest of my life (and I'm only 50) will be this... not quite sick and not quite healthy. I pray that my treatments with Dr. F will bring me beyond that reality, but as of yet I don't know that. I had a treatment yesterday, and, like usual, I am drained, exhausted, and in pain today. A few needles he put in different places yesterday are really hurting... one is very bruised, right under my umbilicus, so when I lean up against a counter top to wash dishes or whatever it hurts. It'll go away, I am used to these things. I hope that he won't unintentionally burst that encapsulated cyst of infection in my abdomen. The infection ghost always haunts me.
I haven't been a very good communicator to Robert. I am closed off, hurt and upset, and feel so distant. He's hurting, too. My life feels like a complete and total mess, failure, useless, and unproductive. And I'm so angry at NF for taking so much from me.
And I can't open up to my husband, there are too many layers of hurt there from years of being forced to be the ill one and not having things taken care of the way I needed them, but didn't have a right to say because I am the ill one and everything falls on his shoulders. It's an impossible catch-22. He couldn't admit (to me) that he feels put-upon because where would that get us? Now I have a little more life, a little more health, and the proverbial poo-poo is hitting the proverbial fan. I don't have a lot of health back, or a lot of life back.
Dr. Frischman & his wife just left to go to the US for an unknown amount of time. Two or three weeks, maybe more. So I'm on my own to keep trying to heal with the Chinese medicines.
And I need other help. Maybe with Robert, maybe without. It'd be better with him, but that is up to him. I haven't had any counseling emotionally for a very long time, and I need it. We need it. Our lives are not normal. But it needs to be someone very experienced, very wise, perceptive, and spiritual for us to be able to relate to them. Our problems are multi-layered, and haven't been taken care of.
It could be that going off my medicines is triggering the recognition of these issues, but they were always there. It's just that now I am feeling it all, the psych medicines aren't numbing my feelings. It could also be that I am in deep mourning for the loss of both my parents over a very short time period. I haven't really talked much about that, but not a day goes by (or actually an hour) that my heart doesn't hurt from those (these?) tremendous losses. Sometimes I feel so alone and cold from such tremendous loss. Sometimes I feel so desolate and broken, it feels hopeless.
Please don't feel sorry for me. I just need to write things how they are. I need to write it for you, and I need to write it for me. And things are really, really hard. That's reality. It would be better if I could open my heart up to Robert. Let's pray for that.
Building my life after the devastation of Necrotizing Fasciitis (The Flesh Eating Bacteria)
Showing posts with label Robert. Show all posts
Showing posts with label Robert. Show all posts
Monday, May 7, 2018
The state of The Union
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state of the union
Saturday, December 30, 2017
State of the Union
We don't have a house cleaner..... and we have a 10+1/2 room, 3+1/2 bathroom house.
It has always been a point of contention between Robert & I, me wanting a cleaner and him against it. We have had a few through the years, but two of them we had to fire for different reasons. Then we had the big robbery a year and a half ago, and hiring a cleaner felt too risky.
But I can hardly do ANYTHING these days. I'm telling you, any time on my feet is time in hard pain. I cannot keep up with the cleaning. And I have high standards.
The other day I just got so fed up with the grime in the kitchen I started cleaning. In complete agonizing pain. This was after I had blown up at Robert for not keeping the computer room neat and clean. I was just FED UP with the dirt. So I cleaned. And I cleaned. And it hurt so much, on a scale of 1 to 10 I was way off the scale. And I was red angry inside. I was feeling a victim of Robert not wanting to get a cleaner, and him not cleaning (by my standards). Now I have set the stage for you-- be prepared.
"I hate you for not getting a cleaning person" yelled LOUD by me with all my pent up anger and pain.
It got worse. I was on a diatribe. A tirade. I said some very cruel things, he came back with not such nice things himself.
We hardly ever fight, but this was so bad. Thank Gd the kids weren't home, because I didn't hold back. Oh, it was so, so, so bad. The worst fight in many many years, if maybe ever. (this being just a few weeks after our 20th wedding anniversary).
The rest of the day and the next day I couldn't talk to him, the anger not abated. He had already agreed to getting a cleaner, but I was too far gone to let things drop.
Now, what happens to me when this anger happens is that I usually turn it in on myself at some point, and the anger turns to tears. I haven't seen this anger in so, so long, but it's still inside me.
The next day (Wednesday night) I became suicidal. Believe it or not, you read that right. I also hadn't seen that "face" in a long, long time (since my bad PTSD days), but I started to convince myself that life is no longer worth living. I am in too much pain, and I can't live this way. The fight with Robert tore me up to my core, and the pain.......... the pain........ it's just too much to handle.
The anger was also at the surgeon who messed up and caused the NF. I wanted to spit in his face.
I have all the medicines necessary to do myself in pretty quickly (more than enough). Drink it down with whatever is in our abundant liquor cabinet, and there was my plan. I had a plan. That is a scary place to be. But at the time I wasn't scared, I was convinced life is just not worth living anymore. The only thing that stopped me is seeing my children's faces in my head, and what it would do to them. I didn't want to ruin their lives forever, traumatize them, devastate them. I couldn't do it because of them. Again, like so many times in this blog, I will say, thank Gd for my kids.
I reached out to my virtual friends on the NF list. I texted to my team, and I heard back from everyone, encouraging me to live, and just staying with me on that chat. I told them about the fight, and that I was suicidal. They helped me. I cried myself to sleep.
Somehow the next day I also couldn't face Robert. It was very hard for me to drop the anger. I was too scared to be vulnerable. That was Thursday. Thursday's are his day off, and I hid away from the family the whole day. I just stayed up in my room and he took over.
Thursday evening he took the kids out to the mall for the shopping they needed. That was when I had a long talk with a friend from the US-- a long time friend who has helped me out of very bad situations before. I had to hack into an old email account that had become defunct (and I forgot the password) to get his phone number, it had been 3 or 4 years since I spoke with him. I called, and heard his voice on the other end of the phone, and was instantly relieved. He was quite surprised, of course, but gave me all the time I needed. Then gave me all the support I needed. I believe Hashem (G-d) guided me with that call. Because after I got off the phone with him, Robert came back from the mall with the kids, and I was able to apologize. We both melted into each other's arms and cried. Both of us. Cried.
That fight was the pain screaming. And my grief... remember I just lost my Dad? Just a little over a month ago. Well, I loved him a real lot. I loved him so much, and I couldn't experience the grief because I am in so much physical pain. But I miss my father so much, that hurts me in my heart.
(But I realize I finally feel freer to write exactly what I need to write because I am no longer worried about getting him too and upset by reading my blogs.)
It was all the pain and the grief talking. Yelling. Grief has to get out. So many tears were shed this week, if God saved them, Israel would have no more drought.
I'm in a bad way. Like, really bad way.
But the state of the union made it through yet another horrible crisis.
And I have my friends to thank for pulling me through it.
And Robert to thank for sticking by my side no matter what. It was I who almost left, not him.
I am going to see the new doctor again tomorrow- Dr. S. I am hanging my hopes on him that he can help me out of this pain. But part of me still thinks we are missing something dark and bad inside me.
It has always been a point of contention between Robert & I, me wanting a cleaner and him against it. We have had a few through the years, but two of them we had to fire for different reasons. Then we had the big robbery a year and a half ago, and hiring a cleaner felt too risky.
But I can hardly do ANYTHING these days. I'm telling you, any time on my feet is time in hard pain. I cannot keep up with the cleaning. And I have high standards.
The other day I just got so fed up with the grime in the kitchen I started cleaning. In complete agonizing pain. This was after I had blown up at Robert for not keeping the computer room neat and clean. I was just FED UP with the dirt. So I cleaned. And I cleaned. And it hurt so much, on a scale of 1 to 10 I was way off the scale. And I was red angry inside. I was feeling a victim of Robert not wanting to get a cleaner, and him not cleaning (by my standards). Now I have set the stage for you-- be prepared.
"I hate you for not getting a cleaning person" yelled LOUD by me with all my pent up anger and pain.
It got worse. I was on a diatribe. A tirade. I said some very cruel things, he came back with not such nice things himself.
We hardly ever fight, but this was so bad. Thank Gd the kids weren't home, because I didn't hold back. Oh, it was so, so, so bad. The worst fight in many many years, if maybe ever. (this being just a few weeks after our 20th wedding anniversary).
The rest of the day and the next day I couldn't talk to him, the anger not abated. He had already agreed to getting a cleaner, but I was too far gone to let things drop.
Now, what happens to me when this anger happens is that I usually turn it in on myself at some point, and the anger turns to tears. I haven't seen this anger in so, so long, but it's still inside me.
The next day (Wednesday night) I became suicidal. Believe it or not, you read that right. I also hadn't seen that "face" in a long, long time (since my bad PTSD days), but I started to convince myself that life is no longer worth living. I am in too much pain, and I can't live this way. The fight with Robert tore me up to my core, and the pain.......... the pain........ it's just too much to handle.
The anger was also at the surgeon who messed up and caused the NF. I wanted to spit in his face.
I have all the medicines necessary to do myself in pretty quickly (more than enough). Drink it down with whatever is in our abundant liquor cabinet, and there was my plan. I had a plan. That is a scary place to be. But at the time I wasn't scared, I was convinced life is just not worth living anymore. The only thing that stopped me is seeing my children's faces in my head, and what it would do to them. I didn't want to ruin their lives forever, traumatize them, devastate them. I couldn't do it because of them. Again, like so many times in this blog, I will say, thank Gd for my kids.
I reached out to my virtual friends on the NF list. I texted to my team, and I heard back from everyone, encouraging me to live, and just staying with me on that chat. I told them about the fight, and that I was suicidal. They helped me. I cried myself to sleep.
Somehow the next day I also couldn't face Robert. It was very hard for me to drop the anger. I was too scared to be vulnerable. That was Thursday. Thursday's are his day off, and I hid away from the family the whole day. I just stayed up in my room and he took over.
Thursday evening he took the kids out to the mall for the shopping they needed. That was when I had a long talk with a friend from the US-- a long time friend who has helped me out of very bad situations before. I had to hack into an old email account that had become defunct (and I forgot the password) to get his phone number, it had been 3 or 4 years since I spoke with him. I called, and heard his voice on the other end of the phone, and was instantly relieved. He was quite surprised, of course, but gave me all the time I needed. Then gave me all the support I needed. I believe Hashem (G-d) guided me with that call. Because after I got off the phone with him, Robert came back from the mall with the kids, and I was able to apologize. We both melted into each other's arms and cried. Both of us. Cried.
That fight was the pain screaming. And my grief... remember I just lost my Dad? Just a little over a month ago. Well, I loved him a real lot. I loved him so much, and I couldn't experience the grief because I am in so much physical pain. But I miss my father so much, that hurts me in my heart.
(But I realize I finally feel freer to write exactly what I need to write because I am no longer worried about getting him too and upset by reading my blogs.)
It was all the pain and the grief talking. Yelling. Grief has to get out. So many tears were shed this week, if God saved them, Israel would have no more drought.
I'm in a bad way. Like, really bad way.
But the state of the union made it through yet another horrible crisis.
And I have my friends to thank for pulling me through it.
And Robert to thank for sticking by my side no matter what. It was I who almost left, not him.
I am going to see the new doctor again tomorrow- Dr. S. I am hanging my hopes on him that he can help me out of this pain. But part of me still thinks we are missing something dark and bad inside me.
Labels:
belly pain
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Dad's passing
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Dr. S
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NF facebook page
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Robert
Sunday, May 29, 2016
My night with the Rocket Man (and other less important details....)
Elton John, 69 years old, still has it! He may have chickened out of using his upper range, or it may have betrayed him in his later years, but yes, he still has it. He can still rock! It was a great concert. He wore a blue sequined long dinner jacket, matching blue pants with sparkly stripes, and bright pink platform sneakers. Oh, and of course, sun glasses. Not the big plastic white, or red ones; no feathers or rhinestones, his glasses have mellowed over the years, but he's just as iconic as ever. Much of the concert was songs that I knew. Each piano introduction sparking immediate memories of the song coming. That was great. He has a lot of new stuff, too, and I am not familiar with that. His newer stuff is kinda bluesy, I loved it. When it came time for the encore, I yelled from the bandstand where we were sitting "Crocodile Rock!" I didn't want the evening to end till I heard that. He must have heard me... because he played it! I immediately jumped up and started grooving to the song, and even Robert joined me. It made my night!
Certainly puts a new feel to the holiday of Lag B'omer for me.


HUGE loving thank-yous go out to 

Adina and Elli, Ari and Chaim, Bracha and Macky, Dov V, Emily and Andy, Gabi and Haggai, Idit and Gordon, Jodie and Ken, Judy and Joe, Linda and Cliff, Lisa and Moshe, Marne R, Miriam and Jeff , Peter Kashin, Rivka and Steven, Ruth and Moshe, Sharon and Asher, Sharon and Neil, Shlomit and David, Tom Kashin, Michael and Lisa, Hedva and Jonathan.
"I never had me a better time, and I guess I never will!" (...from Crocodile Rock)
And I learned something new...
...that blinking/flashing lights can trigger a migraine for me. This was never true until a few months ago, when my migraines were getting really bad. I had been suspicious that driving at night gave me headaches, but I had so many headaches all the time, I couldn't tell what was a trigger and what was a result of already having a headache. At the concert, just for one song (thankfully) they had flashing lights, and from that point on I had to wear my sun glasses. (OK, actually, honestly, I just wanted to be like Elton John and wear my sun glasses. This is all just a clever story designed to justify my bizarre new habit of wearing sun glasses occasionally inside and/or at night.
)
Since I had seen my neurologist the same day as the concert, I was freshly equipped with the assurance that taking Excedrin (or any OTC analgesics), up to twice a week is OK. I showed him my log of headaches since the hospitalization, and we counted eight days (in three weeks) which were headache-free. Not a terrific track record, and in his Israeli accented words, he threw in the phrase "you're not yet out of da woods".
So, when I felt *it* coming on at the concert, I took Excedrin. I had brought it with me just in case. I see that stuff as if it's poison, though... like if you have had food poisoning for many months, and you get better, then someone makes you that same food that made you sick, but beautiful and freshly prepared, you just can't eat it, no matter what. It brings bad associations. But, I took it because Dr. Ezra (neurologist) said it'd be fine.
It didn't help anyway. :(
By the bus ride back I had a strong headache, and by the time I crawled into bed, a migraine. It's interesting to have a migraine *and* Elton John songs going on simultaneously in your head. Medicated myself to sleep. I tried to get up in the morning; we were supposed to go back to Tel Aviv to renew the children's American passports for our upcoming trip (July). To do that, you have to bring both parents and all the kids who need passports. I woke up still with the migraine- that is the worst. There was no way I was going anywhere. Robert took the chance and went anyway. It is not so simple for all our kids to be in the same place at the same time during the week (on Shabbat it happens a lot, but can't get any business done on Shabbat, of course). So, Robert took the four kids to the Embassy. (I have to go to Tel Aviv myself on Tuesday just to sign the forms so they can process the kids' passports. Bleh.)
So after they left, I thought I'd sleep till noon, headache would pass, and I'd be Tinkerbell making everything perfect and sparkly for a surprise when they came home. I thought I'd have Shabbat food prepared, house cleaned, table set up for Shabbat when they returned.
Ummmmm....
Slept all day. I don't even know when they came home, I was sleeping. I never even got out of bed. Didn't eat, drink, nothing.
Again, Robert was able to rise to the occasion, made some quick chicken and green beans, threw together a soup, and planned on using left-overs. Remember, he had only returned from the US two days beforehand. Again... my hero. Thank Gd.
Since then, I've had a low hum of a headache. It's almost always there, kinda hiding out, but peeking. I am not taking anything for it, I am honestly at a loss for what to take. I could try Advil. But that is bad for kidneys. But my kidney tests came out mostly normal(ish). Dr. Ezra said I could take anything I wanted, but not more than twice a week, and not two days in a row. Maybe regular Tylenol. Or maybe nothing, I am getting used to the low hum of the headache. (but it makes me irritable) I hate taking more stuff. I know my body doesn't want it.
Don't yell at me, but I forgot to ask him about doing an MRI. He didn't mention it, and I forgot to ask. There were so many things to deal with, I just forgot. It's usually impossible to see him, unless I again perch myself outside his door on Wed at a certain time, so I guess I'll have to do that again. My next appointment isn't until August. I feel I need the peace of mind to know that there is nothing structurally visibly wrong with my brain to cause these headaches. Can't believe I forgot.
He wants to raise two of my medicines. I wasn't happy about that. I thought we were going toward getting off all the meds except the Cannabis. He said that's not his goal. His goal is for me to be functioning at a level that I can start playing horn again. I was surprised to hear that. I mean, when I met him over two years ago, I told him about myself, but haven't talked about that ever since. He had it in his mind the whole time. He wants to raise my nerve pain medicine (which I have taken for 8 years already for the nerve pain in my leg from NF), as well as another one which also works on nerve pain. I reminded him that we tried that already and it didn't work, and he answered with saying that I was on opiates at that time (Fentanyl), my body will react differently now to it. OK. I guess. He says that medicine that works on nerve pain will help my headaches. Makes sense, it's all the nervous system, but I just have a dream to be medication free. I don't think that's going to happen. When I asked him about the sleeping pill issue, he said to be patient. It's not time for that.
Sometimes we have to amend our dreams. If I can be headache free, and free from daily pain, I will be a better "me". I would like very much to start playing again. Life is short.
I've decided to splurge on a series of 10 massages with my favorite masseuse. Doctor's orders.
First one is tomorrow. Can't wait.
Certainly puts a new feel to the holiday of Lag B'omer for me.


HUGE loving thank-yous go out to 


Adina and Elli, Ari and Chaim, Bracha and Macky, Dov V, Emily and Andy, Gabi and Haggai, Idit and Gordon, Jodie and Ken, Judy and Joe, Linda and Cliff, Lisa and Moshe, Marne R, Miriam and Jeff , Peter Kashin, Rivka and Steven, Ruth and Moshe, Sharon and Asher, Sharon and Neil, Shlomit and David, Tom Kashin, Michael and Lisa, Hedva and Jonathan.
"I never had me a better time, and I guess I never will!" (...from Crocodile Rock)
And I learned something new...
...that blinking/flashing lights can trigger a migraine for me. This was never true until a few months ago, when my migraines were getting really bad. I had been suspicious that driving at night gave me headaches, but I had so many headaches all the time, I couldn't tell what was a trigger and what was a result of already having a headache. At the concert, just for one song (thankfully) they had flashing lights, and from that point on I had to wear my sun glasses. (OK, actually, honestly, I just wanted to be like Elton John and wear my sun glasses. This is all just a clever story designed to justify my bizarre new habit of wearing sun glasses occasionally inside and/or at night.
)Since I had seen my neurologist the same day as the concert, I was freshly equipped with the assurance that taking Excedrin (or any OTC analgesics), up to twice a week is OK. I showed him my log of headaches since the hospitalization, and we counted eight days (in three weeks) which were headache-free. Not a terrific track record, and in his Israeli accented words, he threw in the phrase "you're not yet out of da woods".
So, when I felt *it* coming on at the concert, I took Excedrin. I had brought it with me just in case. I see that stuff as if it's poison, though... like if you have had food poisoning for many months, and you get better, then someone makes you that same food that made you sick, but beautiful and freshly prepared, you just can't eat it, no matter what. It brings bad associations. But, I took it because Dr. Ezra (neurologist) said it'd be fine.
It didn't help anyway. :(
By the bus ride back I had a strong headache, and by the time I crawled into bed, a migraine. It's interesting to have a migraine *and* Elton John songs going on simultaneously in your head. Medicated myself to sleep. I tried to get up in the morning; we were supposed to go back to Tel Aviv to renew the children's American passports for our upcoming trip (July). To do that, you have to bring both parents and all the kids who need passports. I woke up still with the migraine- that is the worst. There was no way I was going anywhere. Robert took the chance and went anyway. It is not so simple for all our kids to be in the same place at the same time during the week (on Shabbat it happens a lot, but can't get any business done on Shabbat, of course). So, Robert took the four kids to the Embassy. (I have to go to Tel Aviv myself on Tuesday just to sign the forms so they can process the kids' passports. Bleh.)
So after they left, I thought I'd sleep till noon, headache would pass, and I'd be Tinkerbell making everything perfect and sparkly for a surprise when they came home. I thought I'd have Shabbat food prepared, house cleaned, table set up for Shabbat when they returned.
Ummmmm....
~~~~~~~NOT!~~~~~~~~
Slept all day. I don't even know when they came home, I was sleeping. I never even got out of bed. Didn't eat, drink, nothing.
Again, Robert was able to rise to the occasion, made some quick chicken and green beans, threw together a soup, and planned on using left-overs. Remember, he had only returned from the US two days beforehand. Again... my hero. Thank Gd.
Since then, I've had a low hum of a headache. It's almost always there, kinda hiding out, but peeking. I am not taking anything for it, I am honestly at a loss for what to take. I could try Advil. But that is bad for kidneys. But my kidney tests came out mostly normal(ish). Dr. Ezra said I could take anything I wanted, but not more than twice a week, and not two days in a row. Maybe regular Tylenol. Or maybe nothing, I am getting used to the low hum of the headache. (but it makes me irritable) I hate taking more stuff. I know my body doesn't want it.
Don't yell at me, but I forgot to ask him about doing an MRI. He didn't mention it, and I forgot to ask. There were so many things to deal with, I just forgot. It's usually impossible to see him, unless I again perch myself outside his door on Wed at a certain time, so I guess I'll have to do that again. My next appointment isn't until August. I feel I need the peace of mind to know that there is nothing structurally visibly wrong with my brain to cause these headaches. Can't believe I forgot.
He wants to raise two of my medicines. I wasn't happy about that. I thought we were going toward getting off all the meds except the Cannabis. He said that's not his goal. His goal is for me to be functioning at a level that I can start playing horn again. I was surprised to hear that. I mean, when I met him over two years ago, I told him about myself, but haven't talked about that ever since. He had it in his mind the whole time. He wants to raise my nerve pain medicine (which I have taken for 8 years already for the nerve pain in my leg from NF), as well as another one which also works on nerve pain. I reminded him that we tried that already and it didn't work, and he answered with saying that I was on opiates at that time (Fentanyl), my body will react differently now to it. OK. I guess. He says that medicine that works on nerve pain will help my headaches. Makes sense, it's all the nervous system, but I just have a dream to be medication free. I don't think that's going to happen. When I asked him about the sleeping pill issue, he said to be patient. It's not time for that.
Sometimes we have to amend our dreams. If I can be headache free, and free from daily pain, I will be a better "me". I would like very much to start playing again. Life is short.
I've decided to splurge on a series of 10 massages with my favorite masseuse. Doctor's orders.
First one is tomorrow. Can't wait.
Labels:
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,
Robert
Thursday, November 5, 2015
It gets harder before it gets easier
Bam...
the hard days come on like a truck slamming on the brakes. Today I
feel like I was in front of that truck, and it didn't completely stop
in time.
I
just don't expect it... truth is I don't know what to expect. Yesterday I
started up Tai Chi again, very carefully, and amending the movements
to simplify them for my thigh joints. The teacher is intuitive and
patient, and I thought it went very well.
After
Tai Chi, Azriel had his orthodontist appointment to get his braces
put on. By the way, I am still not driving. My Tai Chi buddy drove my
car to the lesson, and then our good friend who has been doing a lot
of driving for us took us to Azriel's appointment and back. Azriel got his braces. It took over an hour, me sitting in a hard chair, it wasn't easy for either of us! His mouth is sore today so he stayed home from school. I couldn't take care of him much, and he refused to go to play with a friend after school was over, so he's having a boring day with me. Hardest part is that he hasn't been able to overcome a fear of being in parts of the house where I am not. We have a big house. It makes things frustrating.
Anyway, yesterday... I
got to sleep at a normal time, and slept all night.
I
woke up in a heavy amount of pain, and so tired that actually waking
up was a chore.
I
have no strength. I've been recovering for 17 days, and there are
some pretty good days, and some awful ones. The awful ones feel like,
yeah, I've been run over by something. I feel kinda fluey, and achey,
and the post-surgical pain is stronger. Sometimes it takes a lot of
inner-dialogue to keep myself in check, and not to let myself think I
am developing an infection. As long as my fever stays put, I am not
letting myself worry. I am way past the post-op infection time frame.
Doesn't matter to my sub-conscious, though.
Grateful
for friend's help, grateful for my husband, who is unfortunately
starting to fray at the edges. It's very hard on him.
We'll
pass this... I'm going to get better and have less pain. I try not to
get too down. It's a hard road.
Labels:
eigth surgery
,
exhaustion
,
infection ghost
,
post-op
,
Robert
,
surgery
Monday, June 16, 2014
Alive at the Dead Sea!! About true love, and Ichi-lov.
From happy-go-lucky tourist to patient- *snap*- just like that. Weird. I'm at the hospital now, ready for my surgery in the morning. "Ready".... as I'll ever be, anyway.
But wow, I had such an AWESOME two days at the Dead Sea!!!! Thank you to my awesome husband!!!!
Not only was there a 5-star hotel involved, but Robert kept holding out on me that there is another surprise. He didn't say there was another surprise, but he kept sort of trying to rush me along the evening yesterday, and I knew something was up. He didn't quite say what it was, though. While I was leisurely finishing my dinner at the hotel, he playfully suggested that "it may be worth it to recite the prayer after meals now", implying, so we can blow this joint and get to the surprise place. I did.
We got there, and there was the Masada mountain lit up in the background! It was lit up with different colors, quite a beautiful sight. I hadn't seen mount Masada in many years. We parked, and were carted over to where a very quaint pedestrian mall is situated, styled in the style of old French cafes. There were cute coffee places to sit and get a bite, a few bars set up in the middle area. Very quaint!
After we walked around a bit at the pedestrian mall, there was announcement of a concert about to begin. It said only that the concert was about to begin. I asked Robert what concert it is, and he told me it was some choir. OK, whatever, a concert is a concert, I was game!
I sat down in the amphitheater, with a beautiful stage and Masada lit up in the background. The announcer came over the speaker and told of the upcoming concert: Israel Philharmonic orchestra in an all-Beethoven concert, Beethoven symphonies #1 and #9. OMG!!!!!! I squealed, mouth gaping open, and started to cry!!! I hadn't been at a symphony concert in so long, this was the most awesome thing that he could have planned. Robert took a picture of my shocked look. (We'll have to upload his camera to the computer soon).
The concert was really refreshing. There were some awesome parts, but honestly the conductor wasn't my cup-o-tea. A crazy thing happened at the end. Beethoven's 9th is quite long, and yes, does have a choir near the end, Robert didn't make that up (and vocal soloists). About five minutes before the end, at the most exciting part of the entire symphony, the fireworks that were obviously planned to go off after the piece ended, fired off early! They started booming and sparkling away, before the final 5 minutes of the piece. The conductor decided to stop the piece there! He just stopped, turned around for people to clap, and that was that. I was incredulous! Beethoven's 9th without the glory of the ending is such a let down!! Kind of comical, in a weird way. No matter what, though, I loved the whole evening, I later learned that a coupon was sent out over the website "Groupon" which had the deal for the hotel at the Dead Sea for one night *together with* tickets for two to the Israel Philharmonic Orchestra!! At Masada! It was just too perfect for passing up. I am so glad he didn't. :)
(Did I mention that jewelry was involved, also? Not in the coupon, but on the side, a little box popped out of my husband's pocket. :) It was so romantic!)
It was a wonderful, magical, beautiful evening. It couldn't have been more perfect. Well, if they had actually finished Beethoven's 9th.... that would have been completely perfect. But there *were* fireworks! ;)
Next day we had a leisurely breakfast, then a dip in the Dead Sea.
Well, after the dip in the Sea. it was time to pack up and go back to Be'er Sheva. It was going to be a long day. Stopping at home, switching my overnight bag from a tourist's bag to a patients bag, then heading on to Tel Aviv on the train, to turn myself in, to the orthopedic ward in Ichilov.
Tomorrow is surgery.
I can't imagine going in with a more positive energy than I have right now. This is the most positive I have ever felt before going in for a surgery. Like my electrician said when I asked him how his newly-operated-on shoulder is, he said "fine! This is how it goes: you have something wrong, you fix it, it gets better. Doesn't hurt anymore." OK, I can buy into that. Let's go with that.
So, that's a wrap. I gotta go to sleep. My roommate is about 150 year old bitty little French woman who sounds like she has no teeth when she talks. She is here because she fell, poor grandma!! I wanna go chat with her, but my French isn't that good. And she sleeps a lot.
Surgery is around 10:30am Tuesday. Remember, we are 7 hours ahead of the US.
My name for your prayers, healing energy and positive thoughts is: Sarah Rachel bat Tova.
Next time I write, (or Robert writes), it'll be after surgery. I can't wait for it to be over!
While you are praying for me, please throw in prayers for the three boys who were kidnapped three days ago here. They are 16, 16 and 19 years old, kidnapped by Palestinians- Hamas. My heart has been breaking, and I am so scared for them. I haven't stopped thinking of them for one minute since it happened. Please pray for their speedy and *safe* return. Their parents need them.
But wow, I had such an AWESOME two days at the Dead Sea!!!! Thank you to my awesome husband!!!!
![]() |
| Robert at the reception desk |
![]() |
| At the "Hod Hamidbar" (the "splendor of the desert") Hotel |
Not only was there a 5-star hotel involved, but Robert kept holding out on me that there is another surprise. He didn't say there was another surprise, but he kept sort of trying to rush me along the evening yesterday, and I knew something was up. He didn't quite say what it was, though. While I was leisurely finishing my dinner at the hotel, he playfully suggested that "it may be worth it to recite the prayer after meals now", implying, so we can blow this joint and get to the surprise place. I did.
We got there, and there was the Masada mountain lit up in the background! It was lit up with different colors, quite a beautiful sight. I hadn't seen mount Masada in many years. We parked, and were carted over to where a very quaint pedestrian mall is situated, styled in the style of old French cafes. There were cute coffee places to sit and get a bite, a few bars set up in the middle area. Very quaint!
![]() |
| quaint pedestrian mall entrance |
I sat down in the amphitheater, with a beautiful stage and Masada lit up in the background. The announcer came over the speaker and told of the upcoming concert: Israel Philharmonic orchestra in an all-Beethoven concert, Beethoven symphonies #1 and #9. OMG!!!!!! I squealed, mouth gaping open, and started to cry!!! I hadn't been at a symphony concert in so long, this was the most awesome thing that he could have planned. Robert took a picture of my shocked look. (We'll have to upload his camera to the computer soon).
![]() |
| The orchestra stage with Masada in the background |
![]() |
| The happy duo at the stage with Masada in the background |
(Did I mention that jewelry was involved, also? Not in the coupon, but on the side, a little box popped out of my husband's pocket. :) It was so romantic!)
It was a wonderful, magical, beautiful evening. It couldn't have been more perfect. Well, if they had actually finished Beethoven's 9th.... that would have been completely perfect. But there *were* fireworks! ;)
Next day we had a leisurely breakfast, then a dip in the Dead Sea.
![]() |
| that's me, the body floating in the middle of the picture... I love how that feels!! Nothing like the Dead Sea. It's such an unusual feeling. Ya gotta come try it, |
And, here I lay ever since.
Tomorrow is surgery.
I can't imagine going in with a more positive energy than I have right now. This is the most positive I have ever felt before going in for a surgery. Like my electrician said when I asked him how his newly-operated-on shoulder is, he said "fine! This is how it goes: you have something wrong, you fix it, it gets better. Doesn't hurt anymore." OK, I can buy into that. Let's go with that.
So, that's a wrap. I gotta go to sleep. My roommate is about 150 year old bitty little French woman who sounds like she has no teeth when she talks. She is here because she fell, poor grandma!! I wanna go chat with her, but my French isn't that good. And she sleeps a lot.
Surgery is around 10:30am Tuesday. Remember, we are 7 hours ahead of the US.
My name for your prayers, healing energy and positive thoughts is: Sarah Rachel bat Tova.
Next time I write, (or Robert writes), it'll be after surgery. I can't wait for it to be over!
~~~~~~~~~~~~~~~~~~~~~~~
While you are praying for me, please throw in prayers for the three boys who were kidnapped three days ago here. They are 16, 16 and 19 years old, kidnapped by Palestinians- Hamas. My heart has been breaking, and I am so scared for them. I haven't stopped thinking of them for one minute since it happened. Please pray for their speedy and *safe* return. Their parents need them.
Gil'ad Michael ben BatGalim, Ya'akov Naftali ben Rachel, and Eyal ben Iris T'shura.
May Hashem bring them home miraculously unharmed and speedily!!
Amen.
Labels:
Dead Sea trip
,
Ichilov
,
Israel Philharmonic orchestra
,
Robert
Sunday, June 15, 2014
Road Trip!!!!! (luxurious puffy white pillows are involved...)
Did I tell you what *I* get to do today? No, I don't think I did.... because I didn't even know until very recently myself!
My awesome husband surprised me and booked us a room at a luxury hotel at the Dead Sea for one night, before surgery!
Going today, spending a wonderful day/night/morning at the beautiful and quiet Dead Sea. Going to have an awesome, guilt-free massage, maybe even reflexology. Then we can use the spa facilities: mineral baths, whirlpools, Dead Sea mud treatments for detoxifying the skin and body... yeah, you know, that regular kind of stuff. NOT! Not regular at all!! I can't remember the last time I had a massage, or guilt-free time to spend with my husband with no kids around for two days!! What an awesome gift!!
Going to return home on Monday, switch overnight bags, then kiss the kids and head out to Tel Aviv for check-in and antibiotics. We have logistics planned for kids, driving them hither-thither, people sleeping over.... thanks to all involved!! You're all awesome!!! But all that isn't even in my head today. Neither is the surgery. That is *long* in the future. Today I have an amazing, indulgent trip planned with my thoughtful and awesome husband!
Last time I was actually *in* the Dead Sea- I don't mean at the Dead Sea- we've been there fairly often, but not in seasons or situations that we go into the Sea itself- but last time I actually went into the Dead Sea was, I think, when I was pregnant with DOV!! 15 years ago!! I remember that it was such a relief on my back, lifting the weight of my (then almost nine month gestated) baby off from my organs and spine. It was a "baby-moon". That is what they call a get-away before the birth of a baby, to savor the last weeks before the unknown changes of parenthood get dropped on your head. Not the baby dropped on any heads, of course, but metaphorically speaking. Oh, whatever. You know what I mean!
Let's get back to my two day getaway, shall we?
The Dead Sea is the lowest point below seal level on the planet (an hour drive from my house!). The water is comprised almost completely of salt. It is thick and oily. You can't sink in it, and also cannot swim. There is basically no running current, and it is often completely still. It is 100% buoyant, and when you go in you are immediately lifted to bob around like a coke can. Lying down in the Dead Sea is an awesome experience. You just float. Simple and effortless. Lift up your feet and simply float on your back. It is a fantastic feeling for sore joints/back.
Then when you come out, you suddenly feel heavy again, and your skin feels like you just had a dip in a salad. All oily, but in a clean-feeling sort of way. Hard to describe. It showers off easily (showers right there on the beach). The water leaves your skin feeling light, clean and fresh after showering, it's really remarkable. The famous mud to slather on skin is available for the taking, all over the beaches. Smear it onto your face, or any skin break-outs or anything. The mud has a fantastic healing power, and again, leaves the skin feeling smooth and light. Our hotel has a private spot at the Dead Sea beach.... it won't be jam-packed with tourists! It's a Sunday, after all, not a famous travel day in Israel (Sundays are the first day of the school/work week here, because Friday is usually a day off, along with Saturday for Shabbat).
Yipee!! Wee-hee!! OOOOoohhhhh-lala!!!
Thanks, hubby, my love. You're awesome. I couldn't be more blessed.
Oh, and hey- to the projects I haven't gotten to- yeah, you- household projects- you guys who think that my life exists to serve you- you got another thing comin! We're through. I'm going to live my life without you. No longer will you take up space in my head without paying rent.
We're finished. I'm outta here. ;)
My awesome husband surprised me and booked us a room at a luxury hotel at the Dead Sea for one night, before surgery!
Going today, spending a wonderful day/night/morning at the beautiful and quiet Dead Sea. Going to have an awesome, guilt-free massage, maybe even reflexology. Then we can use the spa facilities: mineral baths, whirlpools, Dead Sea mud treatments for detoxifying the skin and body... yeah, you know, that regular kind of stuff. NOT! Not regular at all!! I can't remember the last time I had a massage, or guilt-free time to spend with my husband with no kids around for two days!! What an awesome gift!!
Going to return home on Monday, switch overnight bags, then kiss the kids and head out to Tel Aviv for check-in and antibiotics. We have logistics planned for kids, driving them hither-thither, people sleeping over.... thanks to all involved!! You're all awesome!!! But all that isn't even in my head today. Neither is the surgery. That is *long* in the future. Today I have an amazing, indulgent trip planned with my thoughtful and awesome husband!
Last time I was actually *in* the Dead Sea- I don't mean at the Dead Sea- we've been there fairly often, but not in seasons or situations that we go into the Sea itself- but last time I actually went into the Dead Sea was, I think, when I was pregnant with DOV!! 15 years ago!! I remember that it was such a relief on my back, lifting the weight of my (then almost nine month gestated) baby off from my organs and spine. It was a "baby-moon". That is what they call a get-away before the birth of a baby, to savor the last weeks before the unknown changes of parenthood get dropped on your head. Not the baby dropped on any heads, of course, but metaphorically speaking. Oh, whatever. You know what I mean!
Let's get back to my two day getaway, shall we?
The Dead Sea is the lowest point below seal level on the planet (an hour drive from my house!). The water is comprised almost completely of salt. It is thick and oily. You can't sink in it, and also cannot swim. There is basically no running current, and it is often completely still. It is 100% buoyant, and when you go in you are immediately lifted to bob around like a coke can. Lying down in the Dead Sea is an awesome experience. You just float. Simple and effortless. Lift up your feet and simply float on your back. It is a fantastic feeling for sore joints/back.
Then when you come out, you suddenly feel heavy again, and your skin feels like you just had a dip in a salad. All oily, but in a clean-feeling sort of way. Hard to describe. It showers off easily (showers right there on the beach). The water leaves your skin feeling light, clean and fresh after showering, it's really remarkable. The famous mud to slather on skin is available for the taking, all over the beaches. Smear it onto your face, or any skin break-outs or anything. The mud has a fantastic healing power, and again, leaves the skin feeling smooth and light. Our hotel has a private spot at the Dead Sea beach.... it won't be jam-packed with tourists! It's a Sunday, after all, not a famous travel day in Israel (Sundays are the first day of the school/work week here, because Friday is usually a day off, along with Saturday for Shabbat).
Yipee!! Wee-hee!! OOOOoohhhhh-lala!!!
Thanks, hubby, my love. You're awesome. I couldn't be more blessed.
Oh, and hey- to the projects I haven't gotten to- yeah, you- household projects- you guys who think that my life exists to serve you- you got another thing comin! We're through. I'm going to live my life without you. No longer will you take up space in my head without paying rent.
We're finished. I'm outta here. ;)
Sea ya!!
Labels:
Dead Sea trip
,
Robert
,
surgery
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