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.

Tuesday, April 12, 2016

Migraine crisis continues

For whatever reason, this is still proving to be an uphill battle with the migraines.

I have had a migraine every day (usually coming in late evening) for a few weeks, and 4-5 times a week for about a year. It's completely outta hand. This is the first time, since I got sick in 2007, that I can finally concentrate on how to be cured of the migraines. There was always much bigger problems to deal with.

Going to try to see my neurologist tomorrow, but no promises if he'll be able to see me. I don't have an appointment for tomorrow; I don't have a real one till June, and there is nothing "available" sooner. I have to just sit there tomorrow and hope to be Israeli enough to get in to see him.

So, until I have more information, or have a direction to go, I am kind of flailing, trying different things. I've changed my diet a lot... hoping something will help. Lately I've also tried the Cannabis oil (medical marijuana in oil drops) which I got so many months ago and never really gave much of a chance. I've tried it for two nights in a row now, the first night having a better result than the second. The second night, last night, not only did I take it pretty late (3am), but too many drops came out at once. It still hasn't really worn off, at 4pm. I couldn't really function this morning, but was able to do Tai Chi, thankfully. Now I know that I have to prepare the drop beforehand, so if it is late at night I won't make mistakes, and be "out of it" all morning. I still think it is not the right species of plant for me. I have decided, after doing some research on migraines and cannabis, to go for a meeting to see how we can change what I have, to see if perhaps another species of the marijuana plant (with different balance of CBT and THC) would be better for me. I called the supplier that is registered through my medical marijuana license, and I have an appointment for Tuesday to have counseling regarding the best one for me. I hate trying new medicines, not knowing what effect it'll have on me, but I have a gut feeling that this may be worth it. The medical marijuana can help not only with the migraines, but also sleep, and appetite (which I have very little of the past few weeks). I wonder if I can use it as a sort of "crutch" to start going off the sleeping pills. That's something I need my neurologist for.

I am also doing acupuncture for easing the migraines. I honestly don't know what will help, but hopefully it's in the category of "couldn't hurt".

This is all so scary. I know it sounds all very logical and clear-cut to you, but I am terrified by it all at this point. Mostly I'm terrified of getting a 'sit-in-the-dark-and-cry' type of migraine, terrified of trying to go off sleeping pills, and terrified of trying new forms of medical cannabis. What will happen this time? There are so many possibilities of what could happen with a new medicine.

This is what my migraines usually feel like, starting from behind the eyes.

Truth is I don't want to be on *anything*.

Let's pray for that, OK? That soon, I'll be able to get off sleeping pills (other prescription meds, also- I want to be off everything), sleep at nights, get the migraines under control, and feel WELL. (That means eating well, too.... that is a very hard goal when in the middle of a migraine crisis. I have not much appetite, and don't know what to eat that I am not risking having a "trigger").

Getting the beginnings of one right now, as the cannabis oil drops from 3am are *finally* wearing off..... Lord help!!

Monday, April 4, 2016


For whatever reason, Hashem has decided that I have more work to do regarding pain.
He and I don't share the same opinion on that, though.

While my hip pain, on both sides, is almost completely gone (I never thought the day would come that I could say that), it feel like I just switched one pain for another.

My migraines have gotten so bad, it's almost too much to bear. I sat in a darkened room yesterday evening, crying, my head feeling like it is splitting open. That was day two of the migraine, including all night. And again, all night last night. The only thing that can help me sleep when it hurts this bad is Percocet. It doesn't really do much for the pain (Percocet is a narcotic, which don't work for migraines), but it does take a bit of the edge off, and helps me to be able to settle into sleep. You can imagine I must be *very* desperate, for me to put any narcotic into my body. I also listen to soothing music in earphones when I am trying to sleep with pain.

My migraine medicine (Zomig) does not work *at all* anymore. I can take a pill, not feel an effect, take another an hour later, and still no relief. Completely useless. It *used* to work. My migraines have become immune to it.

They have been getting worse over the past few months. I don't (yet) know why. Yesterday I went to my optometrist to see if my new glasses prescription I got about six weeks ago is a problem. He tested my eyes again. He did find one possible thing that may need to be corrected, but I am supposed to use eye drops three times a day for a week then tell him if that helped. I may need to have my glasses revised, but I am not convinced that the intense migraines are from that.

Today is day three of the headache (except for Saturday daytime, when I didn't have it at all, thankfully- I got to really enjoy our guests! But the Saturday night migraine was *horrific*). Today I called my Tai Chi instructor who also does acupuncture and Shiatsu, and asked if he has experience with migraines. He said yes, and came today to do a treatment. It was interesting, but of course, not magic- you have to do a series of treatments to see results. I'll do another on Wednesday.

I have been trying to reach my neurologist, but he is so hard to reach. I am going to try to catch him in his office like I have done in the past, but I'm no longer sure of his office hours, and his clinic says he's not in until next Wednesday, and it's booked solid, for months. I have an appointment in June, but my problem is Now. He'll probably just prescribe another migraine medicine (a few of which I am already allergic to). I think it is all stemming from the sleeping problems and sleeping pills, but at this point, I have so many migraines, that I am not sure. I'm interested to see if he has a suggestion to help getting off sleeping pills, but probably not a suggestion I want to try (like substituting it for another medicine).

Yesterday after the optometrist, with a raging migraine, I drove a half hour to see the doctor I have been seeing regarding vitamins and supplements... Dr. Litman. We will "tweak" some of my vitamin etc regimen, see if that helps. There is something I've been taking (amino acids) that may be effecting my nervous system in the brain, so I'm going to cut that out. It's all a long process to get healthy.

As someone who has had the flesh eating bacteria understands intimately- it takes one tiny bacteria to take a whole life down in a matter of hours... it takes many many years to build it back up.
Once the body loses it's inner balance of health, it seems as if it will never be the same.
Now it's the migraines and needing to address the sleeping pill problem. It seems just too hard.

Monday, March 28, 2016

Sweet potato salad, with a side of relapse

It took a long time before my dear friend Miriam and I could find a time to have a "date" together. Life is so busy, it's a rare opportunity when it comes around.

We went to a cafe in a mall. It was *packed*... something we didn't expect. It was the day before the fast of Esther (two days before Purim), and all the high school kids were dressed up in costumes, as is the custom for Purim, and that mall was apparently the place to be seen. And what a scene it was... cupids, zombies (complete with fake blood), pirates, prisoners, an eerie fellow wearing a mask of "The Scream" (by Edvard Munch), Goldilocks, and yes, even street walkers (how do their mothers let them out of the house like that??!!). I'm telling you, it was strange, mostly because, even though Miriam and I both are raising teenagers, we didn't know that this is the thing to do. Our kids didn't do the "hang out in costume at the mall" thing. It caught us off-guard. And it was so *loud*! But since our time together is so limited, we decided to take a table at the cafe anyway (instead of relocating), and order our lunch. At one point I got a call from Robert, and I actually had to go into the elevator corridor so I could hear him, it was that loud.

Near the end of our meal, we suddenly see and hear costumed teens at the top of the nearby escalator running and screaming. We had no idea what was going on. I thought it was some sort of Purim prank (weird things happen all over this country around Purim, expect the unexpected). But, like an ink spill, people all over the mall were also beginning to panic and head for the exits. Rumors using the word "terrorist" could be heard, yet nobody around us knew what was going on. We obviously got up and headed for an exit as well. I instinctively reached out for Miriam's hand, I was getting a bit freaked out. Holding hands, we decided to wait for the elevator (where minutes before I was calmly talking to Robert on the phone), because everyone was crowding the escalator.

As we waited for the elevator, people were scattering all over; some panicked, some bewildered, most were worried. The absolute strangest thing? That these were also all sizes and forms of people in costumes... there were teens running around with fake blood on them, a guy dressed all in black holding a long knife/sword thing, and girl/hookers. The only word to describe it is SURREAL.
Was there a knifing? Is the terrorist running free? Is anyone hurt? Nobody knew anything.
While waiting for the elevator, we heard what, to me, sounded like a gun shot. I lived in Manhattan on the edge of Harlem in 1991, I knew what gun shots sounded like.

We were all alarmed. Well, Miriam was pretty calm. I wouldn't let go of her hand, though.

Eventually, within 10 minutes, the entire contents of the crowded mall spilled out into the parking lot. On the way out I asked the security guard if he had any information, and he also didn't.
People (teens mostly) were crying, shocked, and traumatized out there waiting around in the parking lot. And all the costumes and elaborately made-up faces.... it was like out of a Fellini movie. I, personally wondered if a terrorist with a knife was going to run out in our direction at any moment.

Miriam asked me if I'm OK. I said yeah.
A few minutes later I said "...actually, Mir? I'm not so OK".

We made our way to the car amidst the sounds sirens, police on their way. We didn't see an ambulance, so we hoped that was a good sign.

We got into my car, and I kept pressing the code pad on the dashboard with the code I was sure was right. I have driven that car for four years, I *know* the code. But in my shock, I didn't remember it. I called Robert to ask him the code. He was surprised, but I didn't want to startle him and tell him what was going on (and we still didn't really know what was going on). He told me the code, and we weaved our way past police cars to get out of the overloaded parking lot, to the exit.

As we exited, we heard two huge booms.
Me to Miriam: "did you hear that"?
Miriam: "yes. Let's not jump to conclusions..."

At home, I told Robert about it all via texting with him (he was at work), but we still didn't know what, if anything happened. There were no news reports yet. I talked about it a lot in those next hours. I told my kids what had happened, I was definitely in a state of high alert, possibly a little shock in there, too.

A while later, Robert texted me to ask if I am OK, if I felt that I am over it. I wrote "yup", with no hesitation. By that time we pretty much knew that the gun shot sound was a firecracker that someone set off in the mall (very common on Purim), and that also two teens were having some sort of an altercation, maybe a knife was pulled, maybe not. The news reports were contradictory. What was clear was that nobody was hurt, and there was no terrorist, thank Gd.

I was over it.

The next day, I started feeling that cotton-heady feeling, dizzy, and like my limbs were all heavy. Incredible fatigue. It was a fast day, but after about one in the afternoon, it was clear to me that I had to break my fast. I did so, and I had hoped it would make me feel better, but it really didn't help much.

We went to the synagogue for the night of Purim. I felt awful, physically, but I got there. It was the first time I didn't go in costume... I had no energy for that.

The next day, the big, busy day of Purim, my limbs felt like anvils. I was so weak, I felt faint just walking to and from the bathroom. I didn't leave my bedroom all day, even though there was Purim going on. That was the day I wrote my last post- the one called "I'm getting lost". I didn't get to any Purim festivities, including our traditional community feast, which I have *never* missed. It was truly sad for me, and for my family to have to separate. I just could not move. Oh, and I had a migraine come for five hours, then go, in the middle of the day, as well. It 'went' because I used some heavy medicines to take myself out of my misery.

Friday was the same. A tremendously busy day, but I couldn't do anything. I did get out of my bedroom, but again, my limbs felt heavy, and I was so weak that my joints actually hurt coming down the stairs. That *never* happens. It was so uncharacteristic. I was convinced that something big and bad was wrong.
Thankfully for us that our guests for Shabbat actually canceled, and we (Robert) had less cooking to do.

Shabbat came, and by afternoon I was feeling much better. I went out on a walk with the kids, actually, which felt awesome, like I was breathing for the first time in three days. And just like that, I was feeling normal again.

So, what is the explanation of all this?

We'll never be sure, but, on Friday I had a conversation with my wise and intuitive sister-in-law, Rivka. She already knew the story of what had happened in the mall (as did anyone else who read my Facebook update that day). She suggested that it was a relapse of the PTSD, triggered by the mall incident. Even though, intellectually, I knew that there was no terrorist attack, for a long while there it felt like it, and that is all your parasympathetic nervous system needs to "know". PTSD is like an instinct, once a person has had it, it comes back when the primitive part of the brain stem gets activated by trauma.

What strengthens this hypothesis more is that the day after my conversation with Rivka was when I started to feel the fog lift. What I know from physical responses to emotional triggers (a whole book in and of itself) is that once the person names the emotional problem that triggered the physical response, the physical response no longer has the need to be there. In my history, I have had a certain chronic back pain, and I know that it happens when a certain type of stress and trauma enters my world. When I feel it, I "tell" myself the message like this: "I know what you are, back pain, I don't need to pay attention to you. I get what is going on here, this [subject] is an issue these days". And, it always goes away within a few days. If you want to learn more about this issue of physical pain being a manifestation of emotional triggers, I highly recommend the book "Mind Over Back Pain" by Dr. John Sarno. I read it in 1990, and it changed my life.

In 2007, about six months after I had NF, is when I got hit hard with PTSD. I spent three weeks in the Be'er Sheva psychiatric hospital because of it... it was *that* bad.

So it is quite possible that what happened last week after the mall incident was a relapse of the PTSD. All the symptoms lined up, hit me over the head, and then went away.

I am constantly taken aback when I learn more about the delicate and intricate network which is me, in the aftermath of being plunged into that crazy disease, Necrotizing Fasciitis. We know a lot about the revealed complications and ramifications, which this eight-year blog discusses regularly. The psychological, more hidden repercussions, however, are much more subtle because they disguise themselves as a physical malady to be grappled with. I feel as if I have been enlightened tremendously by this episode. I hope that, if it happens again, I will be able to recognize it and talk to my body, telling it that we don't need to act out emotional triggers. We can just recognize them, and let them go. And move on into health.

Thursday, March 24, 2016

I'm getting lost

Wow, things are really tough and confusing these days. It's like picking petals off a forget-me-not daisy... I'm healthy, I'm healthy not, I'm healthy, I'm healthy not....

For me to feel too weak and dizzy/light-headed to go to our community Purim feast, missing it for the first time *ever*, something is really wrong. I just don't know what. I also missed the reading of the "Megillat Esther" for and by women, which I go to every year. This is *not* me.


recent ones:
incredible weakness- uncharacteristic of me
decreased appetite

ongoing unsolved issues:
increased migraines over many months (about 5 a week now)
a chronic cough and chronic sore throat for three months

My recent blood tests are normal.

I feel that I am going crazy. Because I have had all the health problems I've had, this stuff could mean to me that something is seriously wrong with my health. The going crazy part is that nothing wrong can be pinpointed. Although I haven't done much in the way of diagnostic tests, just a few blood tests.
I don't want to go to a doctor to investigate without obvious clues. And which doctor? And what is the definition of "obvious clues"?

My GP: she will do obvious; blood tests and send me to someone else. Fairly useless.
Neurologist: he will focus on the migraines, sleeping problems, sleeping pill issues
Vitamin doctor- focus on adding more things to a vitamin/nutrient regimen

Then there are all the specialists, "non-conventional" medicine, (all the "-ists": reflexologists, accupuncturists, nutritionists, naturapaths (I know that's not an -ist...), it's a never ending list) valuable in their own specialty, but for me one big blur of "I can help you to feel better". They all have their own focus, and I generally don't go to any of them. You could literally go broke finding alternative specialties that help, maybe, for a while. It's not just the money, it's an outlook... go to another specialist and they know the tricks to help your life. I think that is why I haven't followed up much on these symptoms except for Dr. Litman, and I'm not sure if that is right for me, either. I can't stand putting stock in doctors. And none of the non-conventional stuff is covered by insurance, and it is all insanely expensive.

Thing is, I know how I feel when I am well, and this isn't it.

In short, there are a zillion ways to look at health issues. I have been to many specialists, and they all have something to add to health, but I am left with a question mark. I don't know what to do or who to go to. That's why I haven't gone to anyone. Well, except Dr. Litman the orthomolecular doctor (vitamin/nutrient supplements). I'm not even sure if what I am experiencing has to do with some of the stuff he has me on....

A few weeks ago Dr. Litman recommended that I take huge amounts of vitamin A in order to knock out the cough that I've had for three months. He said that it is highly effective against these coughs that seem to be going around the country this winter. So, OK, I did it. It was supposed to be for one week, a really high dose (50,000 units a day). Problem is that I wasn't really counting the days... I wound up taking it for two weeks instead of one. It is toxic at those levels. I started feeling really awful... not sick, but just not right. My head felt all cottony, and I was constantly dizzy. It was Robert who thought to ask if I have finished the vitamin A or not. Oops... I was slowly poisoning myself. Not a good idea. Good thing is that when you stop taking it, the symptoms go away. I'm much better now. There were a few days there, though, that I was really not good, and couldn't pinpoint what was going on. It was so bad that I had to go to bed all Shabbat two weeks ago. That's scary.
But, it was because of my not following directions strictly.

Those feelings went away a few days after stopping the high doses of vit A. Then the symptoms came back, like now, even though I'm not taking the extra vitamin A anymore. I am dizzy, light-headed, weak, fatigued. Chronic cough, chronic sore throat (which is very sore today).

It is so confusing. Am I healthy or not? I know it's not that black-and-white, especially not for me with my background. I am waiting this out because I don't want to go to doctors for something not clear or specific.

It's getting very depressing. I need to do something and I don't know what to do.
Of course I wonder if I am getting a brain tumor, or diabetes... we all jump to the scary stuff.

I am lost and confused, and not well, and don't know why.