Tuesday, October 17, 2017

Unwelcome New Chapter

I'm at the very scary, but not unimaginable point of wondering if this is EVER going to end.
The stomach pain is my constant companion. I have been taking the medicine for 11 days now, and there hasn't been much, if any change in the pain level. If I'm standing or walking around, I'm in pain, and it's a lot. I can't take it. I need to get off my feet for the pain to let up. Sitting helps, lying down helps more. I am rapidly losing strength because of this. My morale is in the dumps. I'm incredibly tired all the time. I wonder if this is it for my quality of life. This is where we've come. If that's the case, man, I'm not sure I want to be around to see it. I can't stand it any more. Sick is no life. I've seen enough. I've seen more than enough.

Yesterday I went to the specialist who Rav Fisher recommended to me. His name is Professor Fich, and he's the head of gastroenterology at Soroka hospital here in Be'er Sheva, where I live. He came highly recommend. I didn't actually have very high expectations, just because I already had a diagnosis, and had been through all the heavy tests, so I didn't expect much else for him to come up with. But I went anyway because I am still in strong pain, and it's really not getting much better. I am hoping I just have to keep being more patient, and this is a slow healing problem.

Anyway, professor Fich was quite respectful of the fact that I am in tremendous pain; not something to be taken for granted. Many doctors do not respect the patients pain, especially a woman's, and especially if it seems inordinate with the diagnosis staring at them in front of their eyes. He had my paperwork in front of him from my recent tests and whatnot. We talked, he examined me. He said that I have had all the tests, there are no other tests to send me for, but what he promised to do is to take on my case. That was a big deal, in my eyes. He is going to start by looking over my CT himself, with his own radiologist expert, and see if anything was missed. He instructed me to get back in touch with him on Sunday, he'll have had enough time to look over my tests by then, and if he has anything to tell me he'll know by then. I'm not expecting anything, honestly, but you never know. I think that for whatever reason ulcerative duodenitis in me is extremely painful, and it's going to be a slower healing process, and that's just how it is, and I have to just deal with it. In a way having the doctor find something else woulnd't be so great, unless it is something simple and heal-able.

This pain, though, it feels like the middle of my body is dying. I don't know how else to describe it. I don't even know what that feels like, although technically that very thing has happened to the middle of my body before, but I was in a coma, so I didn't actually feel it as it happened. Well, that's not fully true, I was in horrific pain when I had NF, but it was like an entire body pain, because, well, I was actually dying. OK, we won't go there. I know though that when I had NF I could barely move anything at all without tremendous pain all over my body. This, now, it's all belly. But wow, what belly pain it is.

And such tremendous fatigue. I feel like I need to sleep all the time, and when I look at myself in the mirror, I see someone with deep dark circles all around her eyes. I don't understand what is happening to me. I look so unwell.

I have a feeling that this chapter in my life is a very big one, and is a turning point, and not for the better. I want to be wrong about that. I want this all to heal and for me to get my energy back, and return to life as I knew it before this episode. I used to want life to return as it was before NF. Now I will be happy just to have the energy levels- and even pain levels- I had before this stomach episode (which is now about six or seven weeks). I just somehow feel that this is a big turning point, and not a good one. I fear in my inner most fears that this almost unlivable pain is my new normal. God Forbid. I have nearly dropped out of outside life, and cannot be present for most of life's joys. This is no way to live life. Please God let me heal from this. I cannot live this way. Not with pain, please God, not with this pain.

(I am doing a combination of Homeopathy, naturapathy, and Western medicine to help myself heal. You need not make suggestions. Thank you.)

Sarah Rachel Bat Tova

Sunday, October 8, 2017

Finally a diagnosis

The tests on Friday went OK. It's the preparation for them that is awful. But, OK, its over. My lovely friend came all the way from the north of the country in Tzfat to accompany me, and I was so grateful to have her with me. She stayed with us all Shabbat, that was great. Thanks, MD!

I have all kinds of new things to add to my health resume now. New things to learn about, research, take care of, deal with. Yes, the procedures on Friday did show up with diagnoses. That's the plural form of diagnosis... a few things showed up. Nothing too dark and scary, though, thank Gd. All very manageable things.

Turns out I have stars and stripes in the lining of my duodenum and stomach. That apparently means inflammatory gastritis and erosive duodenitis. Ulcers some might say, duodenal ulcerations, sores, not all the way through the lining. Often with this sort of duodenitis there is a bacterial infection called Helicobacter pylori (or H-pylori). Although I had had two tests for that bacteria already, the gastro doctor who was doing the scope on Friday took an internal sample to test for the bacteria as well. It, too, came up negative. So how I got this condition is probably because of overuse of NSAID's (like Ibuprofen, Advil and the like). That is certainly a possibility, being a person with migraines and chronic pain. So, I already knew that NSAID's were bad for me because they are bad for people who have kidney problems. But sometimes when you're in pain, you just reach for anything that can relieve it, you know? I know now, though, that I really have to totally stay away from Advil. That's it. Tylenol only sort of works some of the time, though, unfortunately. So what am I supposed to do? Have a conversation with my doctor.

Thankfully Topamax is not an NSAID. And also thankfully it is working against the migraines since I upped the dosage recently. Also thankfully I don't have to go off it; that was going to be my next line of defense if the gastro tests turned up nothing. I would have had to go off the Topamax in thinking that this pain is a gastro reaction to the medicine, being that this happened a month after starting the medicine. That would have been so problematic on so many levels. Thank God, for now, I get to stick with my migraine medicine.

In the meantime, the gastro doctor gave me medicine to take for two months, saying I should start to feel better within a week. Today is the third day on the medicine and I don't feel better yet, but I have to be a patient patient. I've just been sick for a really long time, I've been in a lot of pain, and it's been so hard.

I really hope that is it. I mean, I can't help feeling that we're missing something. Do ulcers hurt this much? All the time? I guess so, I mean when Robert put "constant pain" duodenitis into Google, 1,690 hits came up, so I guess that is it. So let's just work on that assumption.

I have an appointment with the specialist that Rav Fisher recommended on the 16th. I will definitely know by then if the medicine is working, and if I am feeling much better by then. I hope I can cancel the appointment. I am not canceling yet, though. I just have a "gut feeling" that we are missing something. I hope I am wrong. I don't want to go digging for more problems, and I desperately want this pain to go away. Time will tell.


Tuesday, October 3, 2017

still no diagnosis

I've really retreated from life this passed month. I've been mostly either in bed or on the couch, unable to really do much because of the abdominal pain I still have. There are still no answers, all the tests have come up negative so far. That's so far for the non-invasive tests we've done. We know what that means.... invasive tests next up. I really thought we'd have answers by now. I've had many, many meltdowns because of being in pain with no answers and no treatment plan. There was Rosh Hashana, then we were waiting for test results from cultures and whatnot, then there was Yom Kippur, and I'm still suffering. I'm going out of my mind not knowing what is wrong in my body. It hurts So Much, I've never felt anything like this.

My mind has been going to some very dark places. I've been alone a lot these past weeks. I'm in bed a lot... in pain. In bed, or in the bathroom. Things have been so bad. I've been really feeling like this is it... the end is near. I know that sounds melodramatic, but I get to write how I feel here, and I have to get it out. I think I am still somewhat traumatized by my friend Sabrina's passing last year; I feel like, well, I'm next. Here it is.
I tell you, health is EVERYTHING.

I look at people's pictures on Facebook... I have friends who are playing in orchestras, who are able to travel to beautiful places, who are able to go out to dinner with their spouses, who are able to do fun things any ol' day! It is hard to see these pictures while I'm in pain in bed. I miss life. I keep telling myself, if I get to get over this, whatever this is, I'm going to go to a nutritionist and get on a good regimen, I'm going to do yoga with a private teacher in my house (something I've wanted for a long time), get back to my Tai Chi, and do all the things I want to do with my husband, kids, LIVE.

I wish I could draw a line in the sand and just say from HERE, from this line, I don't have to visit any doctors any more.....

OK, fantasy over.

Back to talking about scans and tests about this issue I have here and now...

The only thing that showed up on the CT scan and the ultrasound is the one little gall stone I have. I've had that on all my scans over the years. The pain I have is not characteristic of gall stones, not at all in the areas that gall pain would be. And the blood test shows that my liver is doing well, so it doesn't look like the gall stone is the problem. And of course I'd like to avoid surgery. Intuitively I don't think it's a gall bladder problem... it feels like stomach to me. I'm also having problems swallowing. And my appetite is nearly gone. But I enjoyed the peanut-butter-and-jelly on whole wheat toast that Robert made for me today! That is one of my comfort foods.

We called our "medical rav", Rabbi Benjamin Fisher from the organization "מגן לחולה" ("magen l'choleh", an organization which helps match patients with appropriate doctors, among other amazing things). He has led us to all the right doctors each time I've had serious medical problems in the past years. Many of my past surgeries have been done by surgeons recommended by him, and have gone successfully. So, It was time to call him. I've been sick for too long with no direction, no good gastroenterologist, no diagnosis, and lots of pain. He told us who to go to; and it is the head of gastroenterology in Soroka (the hospital here in Be'er Sheva, one of my least favorite places on earth for so, so many reasons.)

That doctor does see patients privately, but even using Rabbi Fisher's name and my whole story, I couldn't get an appointment with him before the end of October. I took that appointment, and put myself of the waiting list for mid October, when he comes back from his vacation.

In the meantime, I went today to an anonymous Russian gastro doctor, a different one than the one I saw a few weeks ago. I told him that the pain is worse than it was a few weeks ago, that we need to proceed with endoscopy and colonoscopy. He examined me, asked the standard questions, we talked, and he was very sincere and very understanding. He took me very seriously, thank God. He scheduled me to do both procedures at once... this Friday. As in three days from now.

I'll be in "twilight sleep", he said I won't know that the procedures happened. I won't feel them, especially because I am a patient who is in pain, he will make sure I am fully asleep.

I am very nervous, but I am relieved to be getting these tests done soon.
We will at least then have some answers.

Or not?????? There's a scary thought.

Sunday, September 24, 2017

I can't do this too much longer

You know, I can handle a lot of stuff. I mean, a lot. You guys read my blog, you know what I am capable of. But piling on a lot of pain, I can't do that too long. I'm out of the game.

I'm in too much pain. This belly problem has not yet been solved. Things have been found, but no decisions have been made. Yes, there is a gall stone, that could be the cause. There is some gynecological stuff going on, but I really don't think that is what is causing all this pain. I see that as "the devil we know"... endometriosis, fibroids, cysts.... it couldn't cause this kind of pain, or loss of appetite. I've known the endometriosis pain for years, I know what it feels like. I know what the cysts feel like. The fibroid is new, but I don't think that is the cause of this pain, I just don't think that's it.

I saw a gastro doctor last week before Rosh Hashana and he wrote a list of a whole bunch of other tests to get done. I'll get to those this week. Most of them tomorrow- blood test, poo, and an upper abdominal ultrasound, also tomorrow. I hope (in a weird way) that we get some answers from that. I can't go on like this with no answers. I'm really functioning at a low level. I'm treading water so long that I completely forgot that I actually love swimming. Soon I'm going to forget how to.

I can get up and get around. But with pain. I got to shul (synagogue) on Rosh Hashana, once, for a few hours, but barely could pray. Too much pain. My prayer book barely got used this holiday. I did make it to our friend's house, and we also did have friends over, and I was around, but not really. One meal we hosted good friends and I had a migraine on top of the belly pain so I wasn't there at all. I missed sharing our traditional Rosh Hashana meal with them. It made me so sad.

Speaking of migraines, lately it seems that my headaches are winning the tug-of-war with the Topomax.... I don't know if that means we'll have to raise to dose or what. Every day now for four or five days I've had some sort of a strong headache. Twice I could call it a migraine, but not Large Scale. For a while there the Topomax was totally winning the tug-of-war. I can't help but wonder if whatever is going on in my belly is connected to headaches as well.....

It's really true what they say that if you don't have your health, not much else matters.

I mean, of course life matters. My family, it all matters intensely. But living in pain 24/7-- THIS level of pain, I didn't sign up for this. I'm used to low level pain, in my hips, my knee, on my skin graft, pain from the mesh- localized, deal with-able. I can't do this too much longer. I don't seem to have much choice, though, do I. I haven't even started the game of trying to see which pills may or may not take it away, because that is a slope that I have lots of experience with.... that could also land me in the hospital with rebound headaches, and my body getting too used to analgesics. Been there, done that. I am just waiting out these waves- tidal waves - often just steady gushes of pain in my belly. Today is the first day that lying down is not fully taking the pain away. NOT GOOD.

It's very lonely.

We just have to keep doing tests and hope we find an answer. And pray that the solution to FIX it is relatively simple.

But knowing me....not much on my journey to health has been clear or simple in the least.

I'm kind of losing my cool about this, though. It's too much pain, for too long.

Tuesday, September 12, 2017

Really God? More pain?

I walked into the ER on Sunday with unexplained belly pain and loss of appetite which had been going on for a week. I walked out, about 11 hours later, after being poked and prodded, having x-rays and a CT scan done, and a gynecological ultrasound as well, not much closer to an answer to the riddle. A few things showed up, but it just pointed to needing more tests.

Here I am still with the same problem. My appetite is all but gone, and the pain and pressure in my belly really only subsides when I lie down. But we can't live our lives that way... at least I am trying not to. But it's very, very hard.

I can't really explain what it's like to try to incorporate even more pain into my life. I go between saying to myself that this is all temporary to hearing that little voice in my head that says "no, honey, it's going to take a long time until this is worked out... if ever". I am dealing with a *significant* increase in pain here. And it's not as if I wasn't dealing with pain beforehand. With this, too, let us not forget that my knee is still acting up and hurts me constantly, and I have yet to clarify issues with that. Everything takes time, phone calls, waiting for calls back, paperwork, and waiting for appointments that are hard to get.

This is my life.
I lost out on being on the same planet as the working people at age 39. The doctor who I sued for malpractice, however, gets to keep his profession happily, and even throw me a big smile as we pass in the hallway of the hospital as he leads a band of residents he is teaching, Lord save them. "Hi Sarah" pleasantly surprised to see me. I did not respond. I could have said a thing or two to those residents at that moment. He's very lucky I'm not that person.

The community orchestra I had started to volunteer with last spring starts up again this week. I would love nothing more than to be there... but not this week. I can barely lift myself I am so weak, no less my french horn. My degrees and accolades hang on the wall making me long for those days. I am a ghost of that Sarah.

I may need some pain medicine, I don't know how I'm going to get through this if I have to be more active. I want to be more active, I can't let myself lose it. You know the expression "use it or lose it"...that's what I mean. Pain- it makes one "lose it". But you lose other stuff when you take pain medicine. We need to figure out what is wrong. My mind is going to the dark things- I try to stop myself from going there, it's a waste of energy. Unexplained pain is often a path to the dark things... I've seen so much cancer in my life. Many of us have, I know. I just have to keep it together and try to get in to see a gastroenterologist and get tests done. It all takes so much time. Weeks, months.

And I've put in a call to my orthopedic oncologist about my knee, hopefully we will get to the bottom of my knee problem. It may be PVNS (like a cancer, but not deadly, only deadly for the joint itself). I had that in the same leg, in the thigh joint. I hope it's not because that's pretty bad news.

And the infection on my skin graft is about to win the Guinness's Book of World records prize for the longest lived infection that won't go away and doesn't spread, just hangs out there. I went to the plastic surgeon the other day (yes, with the belly pain, in my condition, with Robert driving, dropping me off at the door, parking the car, etc). The surgeon hem'd and haw'd looking things over, pulled at it a bit (owww), and decided that it does need a scar revision procedure. He wants to cut away the whole pocket of infection, about 3-4 cm's, and stitch it straight. It would be local anesthesia, no new grafting, so it sounds OK. About a month recovery. Thankfully we have no date for that yet, and I am in NO rush to do that, as long as the infection isn't budging, it's on a back burner.

I have an ultrasound for my kidneys and urinary tract tomorrow. Nah, that won't be painful in my situation, not at all. :( Who knows, maybe it'll lead so some discovery of what may be going on here. There was some enlargement of the bile duct seen in the CT the other day, and I think I have (or used to have) gall stones, and that would be seen on the ultrasound tomorrow as well, so I don't know if any of that means anything as far as this pain is concerned, but it might.

The "chagim" or "high holy days" are coming up here next week- Rosh Hashana, followed by Yom Kippur and Succot. Very busy times, very important times. Times that I want to be in the synagogue to pray, and to be with my community. I haven't been able to go since I've been back in Israel, I've been too sick. Also with my knee the way it is I don't think I could walk that far. Although I keep thinking about that amazing hike I did in the Poconos in Pennsylvania! I hiked for about 5 hours, did 1,264 steps up and down (the people who keep Bushkill Falls counted, I didnt!), and that was just a month ago. Yeah, my knee was as swollen as a loaf of bread for a week thereafter, but I did it! And I have the tee-shirt to prove it. :) But with this belly problem, no way. I'm having a very hard time getting around. We'll rent a wheel chair for the holidays. That comes with it's own issues for me, but if it means the difference between being cooped up at home or being out, I do need to get out if I can. The question is if I am in too much pain to even get out for that long, even in the wheel chair.

One day at a time.
That's all I can do.
Let's pray for answers and solutions. I just have a sneaking feeling it's going to take a long time. And I am not happy with that feeling. This pain... it's just not OK. But I don't have much choice.