Wednesday, May 18, 2016

The present, the past, and the passed (away)...

I don't want to tempt the evil eye here, but it's looking like I may be over the hardest part of this weaning process. I did have to go back to the hospital on Saturday night, with a killer migraine, though. That was the last migraine I've had (but it's only Tuesday). I had to go to the ER because I had no medicines to help with the migraine. It got really, really bad again Saturday night. This time, there was a neurologist on duty in the ER, and he made a plan about how to "break the cycle" of migraines and rebound headaches. They gave me a choice to be hospitalized again, but I didn't need that, they gave me what I needed to stop the pain. More importantly, I have some meds to deal with it if it happens again. They aren't great medicines for me, but it'll get the pain down without putting the medicines into my body that I just got off of. We still have a lot to do to figure out if there is a known cause of the migraines, but whether or not we figure that out, the fact remains that I have to manage them when they happen. I'll see my neurologist next week, and probably have an MRI... which could take a while in this country.
Currently, we're counting two and a half days with no headache.

To make matters a little more (but not terribly more) complicated, the company which is supposed to deliver my medicinal Cannabis messed up my order, and I am now completely out of CBD until next week, if I want it delivered to my house. I can get it earlier if I want to travel into Tel Aviv to get it, but of course, that could very well cause a migraine (especially in the present heat wave- high yesterday hit 111F!!). So, now I get to see if I have a withdrawal from *that*. So far, I haven't. Interesting, right? I just had to stop taking it, cold turkey since Sunday, and no withdrawal symptoms. I don't know where I stand on the whole issue of the Cannabis.... it never helped my headaches, and I felt that I am just needlessly putting another medicine into my body which I have to keep up with and spend money on. And my body is so clearly telling me to get off everything, I have allergies to a ton of medicines. I actually need two red bracelets when I am in the hospital because one doesn't have enough space for all my allergies. I feel that I need to try to clear my system of it all. It's NINE years now since I had NF. Now is the anniversary. I've been on and off many, many medicines over these years. I feel that it would be not just a physical freedom to be off of them, but an emotional one, also. In a big way. That is, at least as many of them that are wise to get off of. So do I need the Cannabis? I haven't gotten off sleeping pills yet, that is my next hurdle (but not at least for a few months. I am hardly stable yet from the migraines). Maybe it'd be good to have the Cannabis to help that weaning, but then, well... then I am on Cannabis. But maybe Cannabis can be the absolute last thing I'll go off of? Question is, how much is it helping me? It's the first time I've ever gone off a medicine cold-turkey and not had a withdrawal. I was on it for about a month. Well, I'll get the delivery on Monday. I'll take it for the next month. One thing at a time. It does help me sleep, actually.

Thanks for thinking this all out with me. I'm getting there.
I'm getting there.

Next Thursday is the anniversary of when I woke up from the coma. It's the holiday of “Lag b'Omer”, traditionally for me a day mixed with gratitude, sorrow, pain, and yes, trauma. All I have to do is picture me back there, and picture how it felt when I first saw my body after NF ravaged it, and hundreds of different flashbacks come flooding in. I choose not to dwell on them, and am grateful that I have that choice now. One cannot always choose when to open the gate to trauma and when to keep it closed. I worked hard for that choice.

This year I have a special event that will help change the face of the holiday for me... the Elton John concert! The gift from so many of my friends who have seen me through all this, through thick and thin... it is no coincidence that it is on Lag B'omer. It's another “tikun”... a repair for the damage done in the past.

(did I tell you that my friends also collected enough for a pre-concert dinner? I am sooooo excited!!!)

And also no coincidence, the concert is after my neurologist appointment, on the same day. Please Gd, my brain nerves will cooperate with my plans for the day.

It's all good. It's all about repair.
~~~~~~~~~~~~~~~~~~~~~~~~~

Update, on Wednesday:

Headache.
First major-ish one since Saturday night. I took the steroids that hopefully will help soon, and I have another line of pain management as well, but not ideal for me.

I had the beginnings of this headache yesterday, but it didn't grow bigger... I didn't take anything for it, and used my meditation recording to go to sleep. Tonight it grew bigger. :(
Not at epic levels, but it makes me so nervous, which of course makes pain higher.

This update also includes some very sad news: Robert's aunt, who was really an aunt to us all, passed away this morning. She had been sick, and we expected it was going to happen, and she went quietly in her sleep, at the ripe old age of one-month-short-of-her-90th-birthday. We were planning a trip to NY to celebrate her 90th birthday with her next month.

Now Robert is on his way to the US for her funeral. His aunt Ahuvah (his mother's sister) was a very major part of the family. In many ways a matriarch, although she never had kids of her own. My kids are very sad about her passing, and that they hadn't seen her for over two years (except Shifra & I, who saw her when we were in America in August). She is the last one of her immediate family.

Tonight, as we were walking the dog, Azriel asked me "what if, Gd forbid, you get sick while abba is gone?" It was a poignant question. Just last week I was in the hospital. My unspoken words were that I am nervous of that, too. They depend on Robert for the backbone of the family. I can very much be that, also, but things are much more fragile with me. Let's hope things will be stable. I am strengthened knowing I have a tremendous loving, caring community, and many friends surrounding me. Everything's going to be OK. Whatever OK means at any given moment.

Thursday, May 12, 2016

Withdrawal: MOH (medication-overuse headache)

I was sure I could handle the withdrawal without assistance. I did it with the Fentanyl, how much harder could this be?

Yah, well, it is harder. It's "cold turkey" instead of slowly tapering. That makes a big difference.

Just spent three days in the hospital neurology unit dealing with my horrendous withdrawal headaches.

The second day of no meds was on Shabbat (this past Saturday).
By Saturday night, my pain level was way past 10. It had gotten to 10 at about 4PM that day.
My neurologist said that the hospital could give me an IV "cocktail" to help the withdrawal and the pain if I needed it.

We went into the hospital at 8:30pm.

In the ER, they didn't know what to do for me; I was supposed to be going off over-the-counter medicines, and I was there in terrible pain, they didn't know what they could give me to help. They actually took initiative to call my neurologist at his home, at 10:45 at night.  Dr. Ezra (my neurologist) answered. That is also not to be taken for granted. He told them about me, and what to give me.

I got the "cocktail" IV only at about 11:30. I was in so much pain all I could do was lie in the hospital bed in fetal position and groan. I could barely see straight- my eyes were very effected with this withdrawal. It was hell.

So I was hospitalized at the advice from my neurologist. I couldn't do it alone, afterall.
Sometimes Hashem reminds us that there are things we just cannot do alone. We were not put in this world in a vaccuum; that, part of Tikun Olam (repairing the world) is realizing that people are here to connect and help other people. Ultimately this leads us to strengthen our connection with Gd.

At the hospital they gave me some steroids for the pain and a muscle relaxer medicine. It helped ease the pain a bit, but not a tremendous amount. For the most part I had to just slog through it, praying for Hashem to release me from the pain in my head.

My neurologist is really a gem. I have said it before, and it is only more and more true each time I see him. The morning after my intake, he came to my bed to visit and see how things are going. I said its been hard, but I'm plowing through. He asked me if I am doing any relaxation techniques, the kind I learned from his course on meditation for chronic pain sufferers. I told him I wasn't. At that moment, during busy morning rounds, he invited me to come into his office to do a relaxation session. Right then and there. I got comfortable in his big lounge chair with the leg rest and reclining back. He took my phone and recorded a whole meditation for pain session (in his voice). It took about 15 minutes. He asked me if I have less pain, and I said I didn't, but I am definitely more relaxed. He said to listen to it on "loop" (repeating over and over) to try to help overcome the pain.

Then he carried on with his rounds. Amazing.

He also had a special "protection" assigned to me... the nurses never woke me up to take blood pressure or temperature. After all, I am not sick, I just needed some back-up for a withdrawal. I never got woken up (by nurses or doctors) the whole time I was there. That, I think, is a miracle in and of itself.

I came home on day 5 of withdrawal. The hard part was over, but the headaches still hung around.

Today, the end of day 7, when Dr. Ezra said withdrawal would be finished with, I still have a dull, consistent hum of a headache. I went out with my family to celebrate Israel's 68th birthday, though, thankfully I was well enough to go to that-- our yearly cook-out with friends from all over the country.

My eyes are really effected by this withdrawal. The first two days I had a white light behind my eyes, no matter how dark I made them. I was also seeing strange visions, icons sort of, inside my closed eyes, for days. It was so strange. Now I still have some of that white light effect (kind of nerve-wracking, in a way) when my eyes are closed, and they are still over-sensitive to light. I am looking forward to a headache-free days (I have had one, yesterday), and taking off my sunglasses.

selfie from my hospital bed
Ya'akov calls it "gangsta momma"
What is unknown is what to expect about the migraines which triggered this whole cycle to begin with. I am supposed to start charting them, dates, times, rating of pain on a scale of 1-10. My current instructions are that I can take Excedrin/Advil if I feel a headache coming on (after this initial withdrawal period), but not more than once a day. Also, up to twice a week is OK, but not two days in a row. I see my neurologist again in a few weeks to follow-up, and see what comes next in evaluating the migraines. Probably an MRI first. I haven't ever had scans to evaluate the migraines.

This is all so "one-day-at-a-time".

Did I tell you my right hip (recent surgery, 6 months ago) started acting up also? It hurts these days. It had stopped hurting for like 4 months. I thought I was healed, but now I realize that all those analgesics I was taking were also helping cover that pain. Hopefully when I get back to the gym, and start working out slowly, it will be better. I hope.

As they say in Israel, "פרה פרה" (para-para, literally "cow-cow", like, we'll milk one cow at a time, no matter how many there are. It's a great expression.) Actually Dr. Ezra used an expression taken from Arabic- "שואי שואי" (shway shway) meaning "little-by-little".

I'm getting there.

Friday, May 6, 2016

Neurologist meeting; finally

I finally carved out some time to go see my neurologist. I had to wait outside his door for almost an hour, but he eventually came, and was surprised and smiled pleasantly when he saw me. I hadn't seen him for a year. He invited me in, opened up my file on his computer (I didn't have an appointment, remember), and talked with me as he ate his lunch. I apologized for stealing his lunch hour. He knows it's impossible to see him if you rely only on "the system" for your appointments. I told him my next scheduled appointment is in August, and things have been getting so bad that I resorted to barging in on him. He was so nice about it. Gave me his lunch time.

I told him about the constant, daily headaches. I told him about all the Excedrin and Advil I take daily just to survive the pain. I told him about the medicinal marijuana (he knew about that, of course, because he is the one who submitted the license request, as I was weaning off the Fentanyl). He didn't know that I didn't use the marijuana drops almost the entire time, that I just started two weeks ago.

His main response was:
"In no uncertain terms, you must wean off of the over-the-counter medicines." 
There is a name for what is happening to me: "medication overuse syndrome". It's well known.

He actually warned me of this over a year ago, but I was working on the Fentanyl weaning, and could not handle taking away my migraine pain relief.

He said that until I am off all the over-the-counter medcines, he can't investigate the source of the migraines. We can't get a proper reading on the frequency of the migraines until we know that they are not being caused by overuse of medicines. Right now what I am apparently getting are called "rebound headaches". Thing is, I take the medicine so much because my head hurts so much. How am I supposed to wean from that? Just have my head splitting open with no relief?

Yes, says my neurologist. He told me it's going to be hard, but just for a week. Not like the Fentanyl withdrawal which took 10 months. But this has to be cold turkey. No cutting doses... anyway a lower dose does nothing for my headaches.

He suggested to hospitalize me for the process. He said that they can give me a few different things which are not analgesics to help the pain and weaning process. I flatly refused to be hospitalized. No way do I want to spend any time in that hospital (or any, for that matter), doing what I can do unsupported medically at home. I hope. He warned me that it will be damn hard. Different completely than Fentanyl; it's an entirely different process in another part of the brain than where the opiods hang out. He said that if the pain gets too bad and I'm not handling it, I can go to the ER and get the cocktail that will help the withdrawal any time. I just have to explain what I am doing there, and that Dr. Ezra is my doctor.

I was crying buckets.
Like I said before, there is a special awful place for headaches. I have had lots of pain over the years... migraines included, but in a separate category. All the pain I've had in my hips, belly, thighs, you name it... it just effects me differently emotionally. I cannot take headaches. I am scared to start weaning. I am on a steady diet of Excedrin/Advil, almost every day. Overuse syndrome is defined by taking that stuff twice or more a week. Yah.

How the he^^ am I going to wean off these medicines? I know you are saying "if you could do the Fentanyl, you can do this". But it's not the same. Headaches are unbearable to me.

I am presently involved in helping my friend (who is currently hospitalized) and taking care of her daughter (6 years old). I love her daughter- it's a labor of love, not at all a burden, but there's not a lot of time to wallow in my headache pain without being able to get it under control.

I have to do it, though- I have to get off these medicines. My neurologist was 90% sure that the headaches will be less frequent when that stuff is out of my system. I have a headache at the moment, too. And I am so in need of Excedrin. I did take yesterday, because I am not yet in a position to wallow in my headache, as I said. Yesterday was a very long day. All the daytime hours were spent at the wheel, driving round-trip to Tel Aviv to the hospital so my friend could see her oncologist (taking the train for her is too taxing physically). Evening hours were back here in Be'er Sheva, checking her in to Soroka hospital. She is sick, but hopefully she'll be better with antibiotics. I got home from Soroka at midnight, with her 6 year old daughter. Yeah, we're tired. Understatement of the year.

I don't know when I'll start the weaning, but I have to deal with it. My quality of life has so vastly been reduced with these daily headaches (which sometimes turn into full-blown migraines, like twice a week). Next week holds our annual Israel Independence Day cook-out/picnic with a huge group of very close friends. I don't want to be 'out' for that. But I also don't want a headache. But even if I start now, it won't be over by Thursday when the picnic is.

Sigh

You know how it's been so impossible to get an earlier appointment with my neurologist? That the secretary wouldn't budge from my August appointment, no matter how many times I called? Well, *presto*, sitting with the doctor, he gave me an appointment for three weeks from now. Only through him. It's enough to make one crazy. A magical appointment slot. Something from nothing. I've been so desperate for so long, week after week not being able to plant myself at his office on Wednesdays at 3, and now somehow the appointment fairies opened up a time for me.

So by the time I see him in three weeks, I better be off the medcines. Or don't go to the appointment. He- very kindly but firmly- said that he cannot take care of me as long as I am taking OTC medication. He cannot evaluate any source or do any clarification tests (MRI) until I am off the medication. Only then would we have a pattern of headaches without the meds.

Then, says Dr Ezra, we need to work on getting off the sleeping pills.

How did this become my life?
How did I become this person with the medicines? I was never like that before I got NF. I never took anything, didn't have migraines very often. 

Pain shifts one's world. One's entire universe shifts when one is suffering with constant pain. It's not at all the world of the well. There is a barrier to that world. That's where I'm at... and it's gonna get worse when I stop taking the headache medicines. 

I keep having more hurdles to jump before I can appreciate what well-being feels like.

How did I get in so deep? And this is *after * going off Fentanyl.

I am still taking the marijuana drops, three times a day as prescribed, but it does nothing for me or my headaches. I think I need a bigger dose, but I am wary of going higher. I don't want another thing to wean from in my future. Or maybe it'll wind up being totally positive for me and I won't ever have to go off. But optimally, it's clearly better to be on no medicines at all, and especially not long-term. It will be helpful to have the marijuana drops while I am trying to go off sleeping pills.

I've been on the sleeping pills for almost nine years now. Nine year anniversary of NF is coming up.

On a good note, the day of my waking-up-from-coma anniversary, which falls on the Jewish holiday of Lag B'omer (in about a month), is planned to be a great day this year! Robert & I are going to see Elton John in concert here in Tel Aviv!!!!!!! It's an amazing story how we are going to be there....

I had mentioned on Facebook that I wanted to see Elton John when he comes, but the tickets are too darn expensive. Well guess what? Our dear friend Ken Quinn took up a secretive mission to send us to the concert! He corresponded/spoke to a ton of friends, asking if they are interested in donating to the cause of sending me & Robert to the concert, and not only collected enough for the *close seating* tickets, but also for a pre-concert dinner! Un-buh-leive-able!! The word 'gratitude' seems too overused of a word to express how I feel about this... but yeah... humble gratitude, amazing warm loving thankfulness, and feeling like the most blessed person on the planet to have these people. And to have fantastic Elton John tickets!! {{grin!!}}

Our friends are a blessing in a zillion different ways, and our community is amazing. I can't imagine where I'd be without you all....

We're going have to do this again... the weaning... I need your support... I don't want to do it. I am scared, upset with myself, frustrated, and, well, *really* scared... of having my head splitting open with pain and having no recourse. Well, there is the emergency room and the "cocktail" in an IV drip that could help me. But how, when, how and when??

When????

Monday, May 2, 2016

Medicinal Cannabis


Hanging at the sea of Galilee (Kineret)

In the sea of Galilee/ Kineret
Wazi was the only one who had his bathing suit!
I was hoping to write this morning, finally, after a long break, due to the holiday of Passover.
I am going to try anyway, but I feel a headache coming on, and all I want to do is sleep. I'm exhausted from our wonderful vacation last week, and the holiday which just ended.

The holiday was wonderful. We spent a lot of it up north with our cousins, in Tzfat, Rosh Pina, and Katzrin. We did wonderful activities. A few stand out as really special, but for me personally, the most special was a bike ride my whole family took around lake/valley/bird observatory in the Hula valley. It was around 12 kilometers of outdoor riding, about a 2 + hour bike ride. Each of us had our own [rented] bikes. Now, this wasn't just *any* bike ride for me. It was the *first* (and longest) bike ride I took, in almost 9 years, without pain. Neither hip hurt, no headache, just me & my family and the nature preserve. THIS was my Passover miracle. My personal freedom ride. Woke up the next morning not stiff or sore AT ALL. My orthopedic surgeon is a genius, the rav that sent me to him is a messenger of Hashem, and Hashem is healing me. The magnitude of that bike ride, for me, cannot be overstated. I never thought I'd see that day.















Robert taking a picture,with Ya'akov, Dov & Wazi

















The headaches continue, almost daily. After the bike ride... my legs and hips may have been great (which I never take for granted), but I had a very bad migraine.

Sometimes the headaches bloom into full force migraines, and sometimes I can squelch them with lots of over-the-counter medicines like Excedrin and Advil (together).

Then there is the Cannabis.

Two weeks ago, I decided, after talking with the guy who does acupuncture for me (Eli) and a few other people in the field, to start up taking Cannabis again, this time in hopes that it will help the migraine situation. I made an appointment (after 8 months of not using my medicinal marijuana licence at all) with the new supplier. It was in Tel Aviv, so it was a travel day. (anyone interested in knowing more about the supplier of medical marijuana I am now with, go here.)

I am very impressed with their knowledge, ability to match patients with the right kind of cannabis, and professionalism. Remember the first time I went to the original supplier, and it was a creepy, depressing experience? They gave me oil drops that completely stoned me, but did nothing for the pain. They only had that species of plant for the oil form, no other choices.

There are two main components in marijuana: THC, and CBD. Those two components work in a synergy together, and the medical marijuana companies can separate them, or combine any percentage of either one to mix the correct dose for the individual patient. Here is a bit of an explanation of these two components.

The first supplier gave me a bottle of cannabis oil which was only THC, 25%.
THC is the component that makes one "high". But it wasn't a wellness type of high, it was an awful, detached feeling. I didn't even know the words that were coming out of my mouth. Even though that was the case, I still tried it three or four times, I was that desperate. I tried it primarily at night so I didn't have to drive or talk to anyone. It never felt good. I stopped, and didn't pursue it anymore.

Now I decided to pursue it again... if it can help the migraines, I'll do anything. They are sooooo bad. As I have said before, I have a regular relationship with pain. But headaches are worse than chronic pain in the body. At least mine are. And my chronic pain was (past tense!) pretty bad.

The supplier (called "Tikun Olam") has registered nurses for the counseling sessions. I sat with her for about a half hour-45 mins. Her questions were right-on, and helped me to describe my experience with pain, my history, and what I need. She gave me, as a starter, two bottles of cannabis oil: one is 3% CBD, and the other is 3% THC. That's A LOT different than 25% of only THC. She was shocked that they gave me that. It is totally wrong for my situation.

I have been taking them exactly as I'm told. Three times a day for the CBD, once (or twice depending on pain/need) at bedtime for the THC. I am not yet up to the "optimal" dose they recommended, because you go up incrementally. I'll be there in 5 more days. But, the nurse told me that it takes up to 6 weeks to be in the system before it can have the optimal effect. I am day 13 now. She said after the 6 weeks, we can start to wean off the sleeping pills. She also questioned a different medicine I am on (I am on three prescription meds), and suggested that I wean from that, also, in due time. If all goes well, within the next 6 months maybe (?) I may be off all my prescription meds except the cannabis. That would be amazing. But who knows. I have to find out what is going on with the headaches first and foremost.

I still haven't seen my neurologist. Each time Wednesday comes, I have been busy... either taking care of my friend, her daughter, or my family. This Wed I actually bowed out of taking my friend's daughter so I can have a chance to get into my neurologist. I have to fill him in on these drastic changes. I haven't seen him in 8 months. Things have gotten much worse since then. I am going to request an MRI of my head. My sister-in-law, who is a homeopath and reflexologist, did a little reflexology when we were on a hike in Rosh Pina last week, when I knew a headache was coming on. Based on what she said about where it hurts in my foot when she presses, and where my pain starts with the headaches, she thinks there is a structural thing with the neck vertebrae going on. I hope my neurologist will order an MRI. Otherwise, it'd have to be a CT scan, which is bad for kidneys, and has a lot more radiation. At any rate, please send good vibes for this Wed when I try to get in to see my neurologist without an appointment.

On Thursday I have a blood test for kidney function and thyroid, and other possible anemia factors. Then it's off to Tel Aviv with my friend to see her doctor.

My cousin's lovely wife, who's house and amazing hospitality we enjoyed last week, asked me yesterday how I am feeling. I wrote back saying "vulnerable to headaches". She responded "vulnerable, or suffering?" The answer is "yes, at any given time, every day". At that moment in time I didn't have a headache. But it came that evening. Today I've had a rumbling headache all day, which I squelched from blooming into a migraine by taking 3 Advils and 2 Excedrin all at once. I am now out of Excedrin, gotta buy more immediately.

This is no way to live, and I am finding myself despairing about it.

Friday, April 15, 2016

shot in the dark: hemoglobin? kindeys?

I know this is very controversial to say, but haven't I earned the right to be healthy? To *feel* healthy? I feel that things have been inordinately unfair. I've been through So Much. Infections, surgeries, pain, heavy medications, more infections, more surgeries.... NU?!

I'm supposed to be DONE. I had surgery in October, and I healed great from that, and I am supposed to be able to basque in this time period of vastly reduced pain.

Things have been just really really hard. I mean I'm really struggling here. Daily headaches-- either they are looming, or they are present. If there is no headache, my head is in a constant state of feeling like it's stuffed with cotton, I'm dizzy and light- headed, I have no appetite, can't sleep well. I keep saying to Robert "I am not sick like I'm dying, but something is definitely wrong. Something is WRONG. This is not a normal way to feel."

I'm also very irritable and have a short fuse recently. Surprise.
I am not really enjoying this particular prototype of Sarah. Neither is my family, I'm sure.

I took some time today to consult with Dr. Google.
I have so many symptoms, and so many different variables, it is hard to evaluate anything in and of itself. My medical "rap sheet" is massive, and it is daunting to try to differentiate one set of symptoms from another. But I tried anyway.

What I came up with, at least for the time being, is a possible indicator that my chronic kidney disease (CKD) is rearing it's ugly head. I was diagnosed with Nephrocalcinosis in 2011 (blog post "not kidney stones, stone kidneys") after a visit to the emergency room with searing kidney pain. Could have stemmed from the renal failure when I had NF, could have been from all the heavy doses of non-steroidal pain meds all those years, nobody knows. But, there it was on the CT scan.

For a few years thereafter, I was carefully monitored by a nephrologist, doing kidney function tests every 6 months.

Then my nephrologist switched out of Soroka to another hospital, and I started seeing the one (head of the nephrology department) who took his place. The next time I had my bi-annual kidney follow-up, I showed the new doc my scans and tests, and she declared me fine. The tests and scans showed ever-so-slight, marginal "off" numbers, but I no longer needed to be on nephrology follow-up. That was that... I was cut loose from nephrology, and quite pleased with that. Upon reading this news, my family doctor was skeptical, but she let it drop. Over the past few years, when certain medications, or CT scans with dyes were discussed, she'll bring up the fact that it's not good for my kidneys, and I have always brushed that away. I am no longer a kidney patient. That's all there is to it.

So why would I bring this up now?

Well, one other symptom that follows me always is low hemoglobin (Hgb). It's not insanely low, but definitively low. It's supposed to be 12 to 14 optimally, and mine is always at 10. Never gets higher, no matter what I eat or what vitamins and minerals I take. Has gotten as low as 9, not infrequently. My GP has nothing to say about this. I went through my last surgery this way, and my surgeon brought it up, but it was a non-starter... I have low Hgb, let's proceed with life, nothing needs to be addressed about it.

Today, feeling so desperate for direction out of this unknown entity, I decided to look up possible unusual reasons for low Hgb. Or what the symptoms would be if there was a disease associated with it. Guess what? Chronic Kidney disease is on many lists. Not only that, but I have nine out of ten (ish) symptoms they list....

What are the signs and symptoms of anemia in someone with chronic kidney disease?
The signs and symptoms of anemia in someone with CKD may include
  • weakness
  • fatigue, or feeling tired
  • headaches
  • problems with concentration
  • paleness
  • dizziness
  • difficulty breathing or shortness of breath
  • chest pain
(yes, I have had chest pains on and off)

Then there was this:

Anemia and Kidney Disease
Anemia can make you feel weak, tired, and short of breath.  You may also have headaches and trouble sleeping.  You may also experience a loss of appetite and a more rapid heart rate. 
Anemia often develops in the early stages of kidney disease and gets worse as kidney disease progresses. 
HemoglobinHemoglobin (Hgb) is the protein in red blood cells that carries oxygen from the lungs to the cells of the body.
The test for Hgb is usually part of a blood test called a Complete Blood Count or CBC.  Hgb volume in the blood is measured in grams (gm) per deciliter (dL).  Ranges for healthy individuals who do not have CKD can vary by age and gender, for an adult male the range is 14-18 gm/dL, an adult woman 12-16 gm/dL.
The Food and Drug Administration has recommended that a person with chronic kidney disease who has a low Hgb, most likely has anemia caused by decreased EPO production. Hgb levels can also be affected by the amount of iron in the body. (from this website)

Headaches... trouble sleeping... dizziness.... loss of appetite.... weakness... fatigue.... (yes, sometimes short of breath, and yes, sometimes chest pains)

It's there, I don't know if that is *the* reason for why I feel all these things, but I do think it warrants a panel of kidney function tests, don't you?

I'll go to my GP as soon as I can get in to her.

Oh, and about seeing the neurologist about the headaches; it hasn't happened yet. He is only in on Wednesday's, and this Wednesday didn't happen.

OK, I have to go. I've been sitting outside in the half sun/half shade at the university campus here in Be'er Sheva, enjoying the relative quiet of spring vacation with no students around. I really wanted to go to the beach today, but settled for this instead. (the beach is an hour away, and I wasn't ready to leave early enough). If I close my eyes and imagine hard, the traffic noises can be like the ocean waves. There has been a beautiful breeze the whole time.

Thank you, dear Robert, for understanding that I needed this time away from home, even though it's Friday, and Shabbat HaGadol (the Shabbat before Passover), and the kids are all home. You are so special... I am blessed.