Tuesday, August 7, 2018

USA trip, part 3: COLORADO

"I went to the doctor, I went to the mountains
I looked to the children, I drank from the fountains

There's more than one answer to these questions

Pointing me in a crooked line

And the less I seek my source for some definitive

The closer I am to fine..."

(Indigo Girls)

I did that... I went to the mountains after I went to the doctors. And you know what? It was exactly what the doctor ordered! I just had five days in the mountains of Brekenridge Colorado, and it was divine. Wanna know what else? I hiked. Up a mountain. Yes I did. And the pain is significantly better. You read that right... it seems that the nerve block shots are taking effect! I started to feel it on Thursday, a week and a day after they did the shots. I realized I was walking around town with my friends, and I wasn't hampered by pain. It was nothing short of miraculous, honestly. What I am left with is a sharp pain right exactly where the mesh is, and where the doctor from Afula (the gastro) said I may have a hernia. But the radiating part of the pain wasn't there anymore. Just that local spot. It had been radiating throughout my whole lower abdomen, and that is what I don't feel anymore. Yay for nerve block shots! Now lets see how long they last.

Some shots of the magnificent mountains in Colorado:

this one was out of a gondola car

Also from the gondola

My phone camera could not do any of it justice!

This wonderful group of women I was with in the mountains are women I've known, through email and internet, since I was pregnant with Dov. You see, in looking for a support group for my first pregnancy, I came across this site hosted by Yahoo called "pregnancy today", where you get on an email list with other women who share your due date. Thus was formed the "Oct '98 group". We know each other intimately... I would have known any of them if I passed them in the street, but most of us had never met before. We have been through all life's stages together... subsequent births, deaths, divorces, remarriages, illness...and everything in between. So we decided, about six months ago to do a 20 year meet-up. We voted on this beautiful area of Colarado, and it was wonderful. It was wonderful just spending time with these women who I really love so much, and am so close with. It's hard to describe the feelings we have together. It was truly beautiful (and fun!!). I didn't know if I'd make it. I didn't know what would happen at Mayo, didn't know if I'd have the strength to travel, be social, *do* things, at all. Most of this year I haven't been doing much of anything because of the pain. But I took this risk. And I am so happy I did. Lifetime memories. 

I made some pottery:

went hiking in the mountains (but not as far as others, but that's OK!), and mainly just hung with these lovely ladies and gabbed our heads off! We played some funny games at nights, too. It was awesome. I have such gratitude...for the pain lessening, for the mountains, for this amazing group of women, for my other friends in Denver who we are staying with.

The meet-up after 20 years of "knowing" each other on-line!
There were many women who couldn't join us, unfortunately.
They were truly missed!!
I also met another woman from another of my support group email lists- from my NF list. That was also wonderful. A fellow NF survivor. We also talked and talked, and it felt like we were old friends. We had been in contact with each other for over a year, but meeting in person was the icing on the cake. We went to a beautiful park not so far from Denver, called "Garden of the Gods". It was beautiful, red rock formations. Unfortunately it rained as soon as we pulled into the park, and stopped as soon as we left! But it was gorgeous nonetheless, and the company was priceless.

I'm feeling pretty good. Still having some digestive problems, but overall, the fact that the pain shots have kicked in- the steroid part of them- it is giving me a new lease on life. I now have the task of finding someone in Israel to repeat them when they start to wear off. I think I can do that, shouldn't be too hard.

The whole Mayo experience.... it left me with mixed feelings, but also with optimism. The mixed feelings are because I basically found out that these pain issues I have are probably not "fixable", that I may have to deal with it for the rest of my life. Nerve block shots are sustainable for as long as they are sustainable, but it's like taking any pain killers, it's not fixing the problem. It's temporary, although possibly for years.

I wanted the answer that they can fix me. Or something more definitive about what is wrong. I didn't even get a surgical consult there. Apparently the surgeons who deal with abdominal wall/organ reconstruction were all booked up the week I was there. I kept calling to see if there were cancellations- I called three times a day, and there weren't any. So that was disappointing. I have many questions for a surgeon...mainly what are the chances that it is possible to take out my mesh and clips and reconstruct my abdomen? What are the options? Muscle flap procedure, or stem cell grown muscle, or what else? I still feel like I need that piece of the puzzle. I got a recommendation for a fabulous plastic surgeon in NY. The recommendation was from a woman I met at Mayo, who had a similar problem as mine, and this surgeon reconstructed her whole abdomen without using "props". He specializes in mesh removal and reconstructive surgery. I don't know if I'll get in to a consult with him, the only option for that would be Thursday (in two days) when I'll be in NJ. I am waiting for them to call me back to see if they can fit me in then. I just want a consult...I want to know how to look at this problem. I don't even know if it is a possibility.

Well, as I said many times before, Hashem makes schedules. If I am supposed to get a consult with this doctor, I will. If I am not supposed to be thinking of surgery at all, Hashem won't give me a consult! I just wish...I wish it could be fixed.

In some texts with the doctor of Chinese medicine I was seeing before I came here, he suggested I get myself tested for certain markers for Lyme disease, and other tests for minerals and metals that could be influencing the pain. You see, taking away the pain, while it's awesome, is not getting the problem at the root. That is why I'm so unsettled about how things went at Mayo. And of course I have to do the testing for Crohn's and Celiac when I get back home.

Overall, though, I think because of this Colorado experience, I am doing so much better emotionally & physically. My outlook is positive, my pain is markedly less (but not gone), and I had an amazing time in the beautiful mountains with some very, very special lady friends. Also spending time with my friends in Denver (Azriel's friends & their parents) has been very wonderful. I feel renewed. It's been a LONG time since I felt that. Long overdue.

Tomorrow morning we fly to New Jersey to spend time with my childhood friend Devorah, and my aunt (my father's older sister), and cousins. Then Sunday is the unveiling for my Dad's grave stone (both my brothers will be there, too). Then I leave on the 14th. Kind of leaving on a sad note, but that's OK. It's life. It closes a huge cycle for me, closing my years of having a home base on Long Island. It's strange. The whole time I've been here this trip, I have wanted dozens of times to pick up the phone and call my Dad. I just still can't believe that my parents are both gone. It's been 9 months since my Dad passed away. After I see their graves on Sunday, I honestly wonder when I will ever see them again. Only Hashem knows that. Hard to wrap my head around. My forever bond to Long Island is not physical anymore, it's emotional now. OK, I'm getting sad.

I'm going to close up here, although there is so much more to discuss.
You may not hear from me until after I get home (August 15th), I don't know if I'll have time to write again. But I'll leave you with this:

The other half of the rainbow that started on the
little lake in Minnesota... this one is from Brekenridge
and it's the other half!
(The one in MN started on the right of the world.)


Same rainbow in Colorado, but diagonal camera...

Thursday, July 26, 2018

Mayo clinic, part 2

I am out of pain.

It's temporary...I can hope for another four hours or so for the local anesthesia to stay with me.
Then, I can hope in another few days, or longest two weeks (!), the longer-term steroidal pain medicine will kick-in and help the pain exactly where the local is working right now- my stomach wall. This is what they call the nerve-block shots. I had two today, one above each hip bone, to work on the stomach wall nerves. It's a diagnostic tool; if it works, we know the problem is in the stomach wall. If it doesn't work, we know the problem is something else, something deeper inside. The fact that the local anesthetic worked is a good sign, but the real test will be to see if the steroid part of the shot will work for me.

(oh, and BTW, the shots were put into me directed by ultrasound. And in the OR, the ultrasound transducer fluid is COLD! I asked why they don't have those special warmers, and they said that the cold doesn't give an environment for bacteria like the warm does, so in a case of an injection, they prefer to use it un-warmed. Interesting!)

It's been quite an emotional roller coaster here...hoping to get appointments for all the consults I need lined up in one week, waiting for openings in the schedule. Yesterday was an entire bust of a day waiting on getting into the gastro doctor earlier, but there were no openings, and we had waited in the Gastro unit all day. Mind you, every unit and waiting room there is like a beautiful hotel lobby, with carpeting, free internet and computers available, big soft easy chairs galore, and even large jigsaw puzzles set up on tables for people to mosey on up to and just do parts. That's cool. We did parts of a few puzzles in different units already.

But it wasn't an entire bust. We met a very interesting Egyptian-American couple and talked to them for quite a long time.
Also I did more blood work that my doctor ordered. I didn't understand what it was for, but later in the day when we got home, and the results were posted on my Mayo patient portal, I checked them out. And guess what? They point to signs of Celiac disease! I can't believe we overlooked doing that test in Israel with all the blood work I had done. I went back in all my blood tests for the past year or so, and nope, we didn't test for that. It's not a definitive diagnosis, though. They recommend I do an intestinal biopsy to decisively diagnose. It turns out that the Mayo radiologists who read my CT & MRE saw signs of possible Celiac disease inflammation or Crohn's disease. The interpretations I got in Israel said nothing of the sort. And apparently my colonoscopy I had done in October wasn't thorough enough, the gastro here said a whole section wasn't examined, and that is where this inflammatory process is seen in my other scans. So, when I get back to Israel I have to redo the colonoscopy & endoscopy (JOY), and send the results to my team at Mayo for them to interpret and diagnose. I could do those tests here, but it is many thousands of dollars, and we are paying out of pocket, and it's free (or nearly free) in Israel.

I have a lot of tests to do back in Israel. A chest CT as well, to rule out reasons for my 2+ year chronic cough.

I see my primary care physician (Italian lady with thick accent) again for a wrap-up tomorrow. Thing is, we may not yet know if the nerve block will be effective until after I've left. I have open-portal communication with all my doctors here, I just write a letter and send it through the portal to whoever I want to speak to, and I hear back within a day or two (usually from the doctor's assistant, in consultation with the doctor). It's an awesome system.

I have to see what else she suggests I should really take care of while I'm here, if anything.
Turns out that as of yet I didn't get a surgical consult. I'd like to have one, to have another opinion about surgery, but apparently not many surgeons do the type of surgery I'm looking at (removing mesh/reconstructive surgery), and there isn't an opening until Mid August when I'll be back home already. I can call as many times as I want during the next few days to see if there is a cancellation, and I can possibly get in, but the chances are slim. That's a bummer, but everything is scheduled in the heavens... G-d is the Master of schedules, not us.

The integrative medicine system here is *amazing*. All the doctors are in close contact daily. Things get done in a timely fashion (usually). For example, I had the pain doctor today, then a pain specialist (not MD) training in coping with chronic pain (extremely informative!), then they did the nerve-block shots immediately thereafter, when it hadn't been previously scheduled. Everyone communicates with everyone. All recommendations from all doctors can be seen by anyone on that patients team. This system should be adopted world-wide, this is what patients need. I will post some pictures from the Mayo history museum at the entry level of the clinic, and you will see a little of what I mean.

They have an incredible three-week pain clinic program here. One gets physical therapy (totally individualized of course), and lots of mental training to basically reclaim your life. The pain specialist today told me in length about it, and gave me an entire shopping bag of reading materials and CD's. I could possibly consider coming back to do that some time. If necessary.

If the nerve-block shots work, I'll need to find someone in Israel to do them every three months or so. The long-term hope is that it can retrain the pain messages in my body to stop making pain. I feel it's not going to be so easy to find someone in Israel to do it (paid by the national insurance) on a timely basis, but I'll cross that bridge when I get to it. It's possible that keeping the pain away artificially can change the "pain loop" in my nervous system. That remains to be seen. We're not even sure if this is going to really work yet.

OK, here are some pictures from the museum, and one special one from today out on Silver Lake here in Rochester MN:

Dr. Plummer was really one of the most important founding members of the original Mayo philosophy,
as well as superb doctor. We believe his name should be part of the Mayo name, but somehow it isn't.
They mortgaged their HOUSE to get this microscope
for the clinic!

Not a great photo, but Lou Gehrig was diagnosed and treated here!
He is the one who's name is on ALS. They have a signed baseball and his
original uniform and glove!

Foundation blocks

This... so NICE.
In Israel, I have many many times had to
roll the big roll of paper at the head of the examination table
so the last patients wrinkles are not going to be under me. I always
thought it was so gross that patients have to do that.
Here, this sign is on every exam bed of whatever room you are invited into.
And there are cotton sheets...not a big roll of gray paper.
(yes, I know it's all about funding...)
This we saw today, from our a little battery-powered boat on Silver Lake, after light rain showers. It was breath-taking.


Sunday, July 22, 2018

At the Mayo clinic, part 1

The ultrasound fluid at the Mayo clinic is warm. There are warmers with the ultrasound machines, and when the fluid gets squeezed out from the bottle onto your body, it's warm. I asked the technician if the fluid conducts better when it's warmed. She said "no, that is purely for the patients comfort". Yeah, brings one to another realm of patient care.

So I'm here, a state I had never been to before... Minnesota. Rochester, Minnesota, the home of the famous Mayo clinic. Where the best diagnosticians in the world are supposed to be.

I know I haven't written in a long while. I just couldn't. Things were too rough on too many levels, I was in really bad shape. I just couldn't write more about the gloom and doom, so I didn't write at all.

But after a 25-hour day of planes and lay-overs, Robert and I arrived here.

Our feet hit the ground running. We checked in to the place where we are staying (a home organized by this foundation) at around 7:30pm Thursday (after leaving our home in Be'er Sheva 2:30am Wed night/Thursday morning). We ate a little, then went to sleep. My first check-in was for 6:30am Friday morning. Then I met my new internist here... a tall Italian woman with a slight-build, and a very heavy Italian accent. She was thorough and kind. I was a bit disappointed, though, that after all the painstaking work I did to translate all my medical documents from Hebrew to English, and an entire half-day spent trying (and finally succeeding) to upload my imaging studies (CT, MRE) to my Mayo patient files, she knew nothing of me when she entered the room. Hadn't seen anything. What was even worse, was that my CT wasn't even available for her viewing. I had it with me of course, and her staff uploaded it again for her to see, but that took over an hour. I don't understand how, in a place with such accent on efficiency, my doctor met me with no prior viewing of my case. So, I had to start from the beginning. Because of that, and because she was so thorough, it was a 2 hour consult/exam.

Her first thought was to try nerve block shots with me, through the pain clinic here, to see if that can isolate the pain/nerve receptors and block the pain. It is not a long-term solution, but a type of diagnostic tool. So I will set up an appointment for that tomorrow.

I skipped something, though... in my haste to gloss over the difficult passed few weeks, I forgot to say that the day before we left, we finally heard back from the surgeon from the hospital in Afula, who I had seen some weeks back. He called. He said that he had consulted with the surgeon who had put in my mesh/clips, and he had consulted with other radiologists regarding my CT scan. He did major footwork on my behalf. He told me that everyone said to him not to operate on me. But he said that he feels that because my quality of life has been so destroyed by this pain, and I am young, he wants to try to help. He is willing and ready to do a laproscopic surgery on me, to release adhesions, fix the suspected hernia in the mesh, fix whatever abnormalities are happening with the mesh (it may be folded over on itself), and do what he can. He would not do an open surgery, though, he feels that is too risky. Whatever he can do laproscopically he will. OK, so here is someone willing to take a chance on me, to help. I told him I was headed to the Mayo clinic, and he said "Excellent. Call me when you return and let me know what they said and we'll go from there".

So that is on a back burner for now.
I don't WANT surgery. At all. My mesh was put in laproscopically, and that hurt for an entire year thereafter. That was when I started on the Fentanyl. And it may not even help, we have to know that, too, and it may even put me in deeper pain. But I have to do some risk assessment here, I mean yes, I have lost almost all my quality of life. I have to be willing to try to change that somehow. But surgery is scary in my case. But not out of the question. And I haven't yet met with Mayo surgical consults, so the jury is still out on this issue.

So, after my internist consult, it was blood test time. Done quickly and efficiently, and even bandaged the place of the blood draw afterward! In Israel, you walk out of the nurse's station after your blood draw with your hand holding a piece of cotton on the area, and if you take it off too early or don't apply enough pressure, you bleed all over the place. Usually I wind up with huge bruises for weeks thereafter. This time, no marks at all except for where the needle went in! The small things can make a difference.

After the blood test, I was scheduled for two ultrasound exams. One for the arterial function to my abdomen, and one for my kidneys. That's when I leanrned about the warm ultrasound fluid. I don't have results from those tests yet.

Robert was pushing me around in a Mayo wheelchair the whole time. Thank Gd for those, it is a huge place, and every test is in a different locale. We hit the mall there, too, because I was completely freezing from the time I hit ground in Chicago! Yes, Chicago-- we had to change planes there to Rochester. The tiny little plane that took us to Rochester MN had COLD MIST coming up from the sideboards in the floor, and my legs were frozen solid. No blankets on offer on that flight, either. I couldn't warm up all the next day, either...I hadn't thought to bring a sweatshirt or jacket of any sort. It's 100 degrees (or over) every day in Be'er Sheva, it just didn't occur to me that I might be cold in the US. So, we bought me a Mayo Clinic sweatshirt. Cozy.

Then we came back to our rooming house to get ready for Shabbat. We didn't have to do any cooking, though, it is all provided by the organization. That is *so tremendous*, it's phenomenal. Shabbat was with another couple and a single woman also staying here, we ate dinner together. But Shabbat day was a bit lonely; the couple left, the single woman was visiting her friend at the hospital all day, and Robert went to the Chabad shul to pray (too far for me to walk). He didn't get back until after 3pm, so I had a lot of quiet time.

I have not stopped being tired since I got here. I slept almost all day yesterday, as well as night. Jet lag. Today is Tisha B'av, and we'll go to the Chabad later for a program they are having. The rabbi of the Chabad here is from Be'er Sheva, BTW! I knew his father (of blessed memory), and know his mother. That's cool.
I am fasting so far, but I am prepared to break the fast if I feel I am getting sick.

Tests and consults start up again tomorrow morning, and go through the week. I'll try to keep you posted on progress.

I can't believe life has brought me here. It is such a deep, curious trip, this journey called life. I just pray I can get to live it in less (or no?) pain.

And I pray my kids will be OK during this time period we are gone. It's complicated. They know I haven't been well in a long time, the dynamic between all of us has changed. If the mom's not OK, the kids know it and are affected. We are all hoping that better living is on the way. I feel so sorry for the kids sometimes, what they've had to endure through my illnesses. I know that each of our characters is built through our life experiences, but I wanted better life experiences for them. I wanted better life experiences for *me*, for my marriage, for my life. OK, not going there, I'll start crying again. Let's move forward.

We're moving forward. With the help of G-d.

Tuesday, June 26, 2018

my pilot light is dimming

I don't even know where to start, or what to write.


My laptop died last week, so that is one reason I haven't written recently. It's only one reason, though. I am writing to you from a new laptop... not yet formatted how I need it, but getting there.

[actually as I was writing, the new -refurbished- laptop died too. I'm finishing this blog entry on Robert's desktop, which is uncomfortable because I have to sit in a chair for too long, and because his keyboard is too mushy for me.]

You know what? NOTHING is important to me anymore. Really nothing. Nothing material, anyway.

I barely even want to live. My every day is consumed with pain and sadness, who would want to live?

What is important is friends and family.

Some friends are dropping away. I heard that's to be expected, but it doesn't hurt any less. People
can't deal with this level of problems when the problems are not getting better. I understand them, I don't want to live with it either, but I don't have the choice. Nobody is calling (except HF- thank you so much), I may get a message from my closest friends occasionally. They have no idea how my life has turned into zero; and it's sub-zero without them.

And family, what little of it is left, I hear nothing from anyone. Everyone gets to move on in life. Me? Whatever.

My immediate family is everything to me, but even to them, it's trying. I'm so often in pain, and so often so deeply sad, I'm a mere shell of what I used to be. I went out with Dov (19 years old) the other day to a nearby lake. We had planned it for a week, that we'd spend special time alone together on Sunday. It was great. Except that I was still recovering from an ear infection, and my ear started really hurting me when the wind kicked up at the lake. Then that evening I had a migraine, and couldn't sleep all night.
I'm in such a state that anything throws me off completely.

It was great to spend the time with him, but I need ME. I need to have my body and soul returned to me for proper usage. I am a complete shell of my former self. 'Former' meaning before this intense abdominal pain began last September. More former than that I can no longer want.

Remember when this all started I said I had a feeling it wasn't going to go down without a fight? How did I know? How did I know this was going to be a life-changing situation? I just felt it, deep in my gut, so to speak. I've been through my share of life-changing situations, I knew when this pain started, that it wasn't at all good, and that it wasn't going to go away easily.

A few weeks ago I ran away from home... for a Thursday-Friday-Shabbat alone, at the Dead Sea. I literally ran away, I barely even said goodbye because of the emotional state I was in. I didn't even know where I was going, I just needed to get away.
But you know what? I'm in constant pain. *Nothing* takes that away. I took it with me, obviously. It was a nice Friday at the Dead Sea, but Shabbat was lonely, and I was in lots of pain. Didn't give me any real lasting change.

I have seen a few doctors since I last wrote.

My friend recommended a certain gastro doctor she knew. I don't know what sort of doctor I need, if it's gastro, of surgical, or internist, or infectious disease. But, on a high recommendation (and great desperation), I went to see this gastro doctor she recommended. It was a long drive, about two hours away. Robert drove, thankfully. Again I explained my plight. She listened very attentively, was extremely intelligent, and asked good, targeted questions (and looked me in my eyes, a rarity for doctors). She looked at my CT scan. We left there with her saying she wanted to consult with the head of surgery in a hospital in the north of Israel (Afula) who happens to be her husband. OK, so we waited.

Of course she didn't get back to us after a few days had passed. People in general don't get back to you-- I am so fully aware of that, it is just another point of hardship of life. Robert wrote her a text (she had given us her private cell number), and she wrote back that we should make an appointment with her husband (chief of surgery in the northern hospital). We saw him on Monday (yesterday).

Long story short, he was a lot like his wife... amazing listener, very intelligent and clear, caring. We had an hour and a quarter consult (extremely unusual for private Western doctors) and exam.

Nothing yet. He'll get back to us after he has the chance to consult with the surgeon who put in my mesh & clips, and to look over my (new) CT scan with a radiologist he knows.

He made sure we knew that he understands that it's very complicated, and he may not be able to help me. But that he wants to explore options by doing some consults on my behalf. He may think about an exploratory surgery, but doesn't know yet. He said he thinks the mesh is folded over on itself in my belly.

And as far as I can see now (not very far), I'm still going to the Mayo clinic in July... the 20th, to be exact. Robert is planning to accompany me (new development). They have set up for me a team of diagnosticians- all the sorts of doctors I mentioned above (internist, surgeon, infectious disease doc, gastro). I just don't know where this will lead me.

Bottom line now? Life is so awful, I don't see hope on the horizon. What is life like with no hope? No reason to wake up, nothing can be accomplished during the day, and often a headache by the nighttime from crying. It seems to me that the world gets to keep on going, and it is leaving me behind. But I'm alive, so that's the problem. I'm not only alive, but I'm locked into a not-functional body. I have a tremendous amount to offer the world, and my family, but I'm locked in. I haven't been able to work, or pursue any of the passions I have. What's worse is that it is all dying... the passion... it's all dying. My light is slowly, painfully, going out. All I have from sunup to sundown is harsh abdominal pain. There is no where I can go, nothing I can do. And the depression that has arisen as a result of that makes life impossible entirely.

It's not sustainable.

That, together with family & friends dropping off the radar?
Yeah. You got it. But you probably don't.
It's really impossible to understand my situation unless you live with me.
And even then, I know that nobody can understand.

Wednesday, June 13, 2018


What I am going to write about here is that I'm giving up.

I can not live this way, in constant pain with no hope of it ever going away.

No, I'm not killing myself, I wouldn't want to traumatize my children. I wouldn't do that to them. But really, what is left of me is next to nothing.

What I wrote in the last blog about the fighter? It's lost. I have no more fight.

I'm in very bad shape.

I returned to Dr. F for a few more treatments, and as usual they were painful and rigorous, and I just can't do it anymore. I can't go there, leave dazed but in fairly good spirits, wake up the next day in more pain than I had the day before, lick my wounds for a week (from extreme acupuncture and extreme body treatments to ostensibly break up scar tissue), then go back a few days later and do it again. I just can't without seeing real results that last more than a few hours (if that) after treatments. It's more than a thousand shekels a week, and I don't have that kind of money. I have four kids to raise, and an unknown future medically. I have no pension (or a tiny one from the 12 years I was in the orchestra), and have no reason to believe that I won't need tremendous medical care as I age (I'd rather not age, honestly. I sometimes hope that G-d will just take me by the morning so I won't have to suffer anymore. But then I wake up, and have to cope.). I am extremely worried about finances, and I can't throw money into treatments that are questionable if there will be any lasting effect. I have yet to see it.

So without any hope of ever getting out of pain, that kind of leaves "hope" out in the cold.

Any surgery would leave me also in tremendous pain, and possibly not help. I've had enough insanely intense abdominal surgeries to know that there is no magic there, either.

There is no way out of pain except for more pain piled on top of it.

I am no longer able to tolerate that.

Someone who I trusted yesterday said to me (in a text) "you used to be brave, but I'm not sure about now". That hurt went deep, deep into me. Thank you for that. You know who you are.

So what does giving up look like?
I don't know because G-d keeps making me wake up.

I'm nearly off all my medications. Remaining to go is 1/2 of an anti-depressant, and the 1/2 is not a therapeutic dose. Then last to go will be the sleeping pills. Maybe.

Is this wise? I don't know. I wanted to go off them, nobody forced me to do it (but I certainly was lead to believe that I'll be better off without them). But I'm not convinced that I can live life without them. Witnessed in the deterioration of my emotional and spiritual life. I pretty much know that if I'm going to live, I might have to go back on an anti-depressant. The Chinese medicine doctor may know a lot about Chinese medicine, but he probably should stay out of psychiatry.

But I'm in no-man's-land right now. I'm pushing away all those who love me most; I'm really good at that.

I want to die but I can't.

I'm supposed to travel to the states in August, I don't know if I'm going to make it. I have appointments with the Mayo clinic after my father's gravestone unveiling, I don't know how I'm supposed to do any of it. And what is the Mayo clinic going to come up with besides possibly more surgery? There *IS* no solution. Who am I kidding?
I'm supposed to travel with Azreil, rent cars where I go, get to three different states in as many weeks, and I don't see it happening.

The way things are going, I'm not going anywhere. Not physically, emotionally, or spiritually.
I've never been so stuck in my life.
I'm in trouble.