Monday, August 14, 2017

Pain in the USA, 2017

Writing to you from the good 'ol U.S of A, specifically, the Pocono mountains in Pennsylvania.
We've been pretty busy, but also resting a lot. Mostly spending time with many family members, which has been the main goal of this trip, so that's good. We came here to the Poconos today, Sunday, to a beautiful rental house that Robert found on the internet for us for the week. It's near a beautiful waterfall, river, and quaint mountain and country activities. It's our family vacation time.

I wish I could say that it's all peachy keen with me, but it's not really been smooth sailing. Not by a long shot. In fact, I'm quite worried about all the pain I've been having. I took all the antibiotics that I was supposed to take, and they didn't take away the infection on my skin graft. They ripped up my stomach something awful, though. It made for a pretty bad plane ride... I was in that little plane bathroom more than in my seat. Ugh.

So about that infection... I don't know what to make of the whole thing. I am so confused. I went to CVS, and bought a wound dressing of Silver Alginate, which said on the box kills Staph infections. It seems to have really worked. I have been putting little squares of it on the open wound every other day or so, and it is getting smaller and smaller. It's really awesome. But, at the same time, I am having more and more pain in the whole Gapey area, like the entire graft area has been so painful, it has been hard to just walk, or sit for any length of time. Lying down is the only way to remedy the pain. That is *not* good. I have no outer signs of infection, so as I said, I don't know what to make of it. I am, for now, deciding to deal with it when I get back to Israel, unless I see or feel outer signs of infection. If this pain does not go away when I get back home, I have to seriously consider going on a pain medicine again. Not Fentanyl, a different one. I completely don't want to do that, but I cannot live with this level of pain, it's definitely too much. I don't know why it is happening, other than this vacation is just challenging my body too much. If that is the case, it should calm down once I get home after a few weeks. Let's hope that is the case. But all this pain makes me very nervous. I can feel the whole mesh that is behind Gapey; whole thing, and all the clips that hold it on. Not good.

Also, on this trip, and beforehand for about a month before, I have a consistent lower right back pain. I have a gnawing suspision it is a kidney problem. I have had blood tests, like when I was in the ER a few months back, and the reading for kidney function was OK, but the pain is very persistent. I have had Nephrocalcinosis (also known as a type of chronic kidney disease), and haven't had a full kidney work-up in many years, and with this lower right back pain being so consistent, something is wrong. When I get home I'll have a complete kidney work-up done. I am also planning on switching GP's.

And lastly, my knee (left) is consistely swollen. The swelling has not gone down for over a month. We have no idea why. It is also painful, especially with stairs. I have never had knee issues before this, so either it is connected to the staph infection with Gapey, or it could be new PVNS tumors showing up in the knee this time instead of the thigh. I may have to get an MRI and go to my orthopedic oncologists at Ichilov hospital to get that diagnosed.

In short, I'm kind of a mess. I need to be home, but I'm not, and I have to make the best of it. It's not so easy. I can't really enjoy the vacation with all this pain, it really stinks. I'm just taking this day-by-day, sometimes hour-by-hour. It's really not simple.

Someone on my NF group today wrote about the difference between surviving and living. I wrote that with pain levels rising, I'm finding it harder to live, and I'm going into surviving mode. I'd like to choose to live, though, that's for sure.

Thursday, August 3, 2017

Infection strikes again

(this blog post does not end on the same day it starts... it's been hard to find time to write, I've been very exhausted, and very busy... bear with me here...)

~ ~ ~ ~ ~ ~ ~ ~ ~ ~ 

You have no idea how much I am freaked out today. I don't even know if I can express it in words.

First of all-- DAD: Don't worry, I'm really OK. I promise. I am not writing this because the world is collapsing. I am writing this because this is the only place I "discuss" these hard feelings I have. I'm OK. I repeat, I'm OK!! Say it out loud to yourself "Sarah is FINE". Now, smile.
There. That's better. Now I can write. Love you. :)

OK, so why am I freaked out? Well, here is a picture, then I'll explain it for those of you who don't understand Hebrew...


The page goes on to give more information about what antibiotics
the specific bug is sensitive to. Unfortunately, the first three in the list,
I am allergic to. So we chose the fourth. It's sulfa based, hopefully it'll do the job.

OK, That was yesterday... Sunday. Between yesterday and today I feel like it's been a week. See if you can follow what went down these two days:

Sunday: Woke up, felt OK except for the aggravating and painful infection in my skin graft and my swollen knee of unknown origin. I had walked a lot over Shabbat, and my knee was very sore and swollen. But I had my Osteopath appointment to go to in Jerusalem. I also had to find out the results of the wound culture. I called my health clinic, had to wait an eternity for a nurse to answer. Then I was told that she can't give out results over the phone, but I can retrieve it over the internet with a code. OK, I didn't know that. So jumped on over to the internet and managed to wrangle the results to show up. Boy, was *I* surprised! At first I thought that S. aureus meant Strep A. That's what I had when I had NF. I was sure that was what it meant. All day yesterday I was saying that's what it is. But my doctor said I didn't need an oral antibiotic for it, just try another cream. I tried to reach my doctor to talk to her, because my knee was also swollen, and I felt I had a systemic infection going on and she wasn't taking it seriously enough. But I couldn't talk to her, just send texts to her through the secretary. It was nuts. So then the secretary said that my doctor said just wrap the knee and keep it elevated, and put the new cream on the infection.

Then I left in my car to go to Jerusalem. I was getting more and more anxious as this was settling in, as you can imagine. I have active strep A, and my doctor is being pretty passive, in my opinion. I have tried many creams over the month. I have tried triple antibiotic cream, iodine, neosporin, all of them many times, and I washed the area many times with anti-bacterial soap. All that, and it still cultured positive. Now she wants me to try another cream? Did she forget entire sections of med school? I said a few weeks ago that I think I need an oral antibiotic. She said she didn't want to play around with oral antibiotics with me because of my allergies. But this, this is playing around with my life. Antibiotics have a purpose in the world. I haven't been on any, or needed any in almost two years. It's not so terrible to use one when necessary. I felt she was being cavalier.

Oh, and I forgot to tell you that I did go to the health clinic last week on Friday to try to get an oral antibiotic. Knowing I'm traveling soon, and having this open wound on my skin graft has been very heavy for me. My own doctor isn't in on Fridays, but you can see the one that is on. That doctor wanted a swab of the wound in order to choose which oral antibiotic to give me. *But* you can't do blood tests or any cultures on Fridays in Israel unless you do it at the hospital directly. So, she gave me a referral to the ER to get an urgent swab, with the goal of oral antibiotics. OK, I thought, we're getting somewhere.

I got to the ER, waited a bit (not too bad), and saw two different doctors; one plastic surgeon, and one internal medicine doctor, both less than half my age. The whole visit was absurd... they didn't do anything the referral said to do, mainly take a swab of the wound, for the purpose of choosing which antibiotic to give based on knowing which bug was infecting the wound. "No, that's not necessary", "come back if it gets worse". They weren't impressed because it clearly wasn't cellulitis... yet. I said the object was for it to not *become* cellulitis. They said I have no fever. I said I also had no fever when I had NF. They said this is not NF. I felt like I was talking to a wall. Really? Oh, I coulda SWORN this was NF!? Huh, whaddya know! grrrrrrrrrrr.......... like I had nothing better to do on a Friday afternoon than argue with ER first year residents that I need antibiotics for an open wound. The plastic surgeon resident had the gaul to say that the skin graft skin seems a bit dry, I'm not taking care of it well. I almost screamed at him- "I have had this skin graft since before you were in high school, buddy, I think I know EXACTLY how to take care of it".

What I should have said before I walked out of there without antibiotics is "the last time we all played this game of 'let's not give Sarah antibiotics for an infection' game, the hospital had to write me a big, fat check". But, you know, we never say these things. I just walked out. I was too tired, and too much in pain. Oh, and my knee was swollen, too. I was thinking the knee swelling was the infection spreading, and that worried me, but again, the ER was dismissive about that as well.

I spent a painful but also enjoyable Shabbat with friends, trying to forget about my issues. But it was impossible to forget about them, pain does not let you forget about your issues. Ever.

On Monday I went to my family doctor. She was a little perturbed that the ER did nothing, and she did the swab herself. Then we had to wait for the culture. She examined the wound, and my knee, and felt the two weren't related. I continued to feel they were related.

I'd wind up waiting the whole week for the culture results.

So now were back to where I wrote up there  about finding the results on-line, three days ago. That's when I thought I read Strep A. It freaked me out so much, you can't imagine. It was a whole 24 hours later that I learned that it was staph. Mind you, that's no better, and can also cause NF, but for me it's different somehow. In fact, I learned that when I had NF, I had a combination of strep A *and* staph. I hadn't known that before. The infectious disease doctor was looking at it in my file right in front of her. Interesting.

OK, let's now jump to the day after I saw the osteopath, which would be Monday. I had set up an appointment with an infectious disease doctor who I know and trust, at Soroka. I had her cell phone number, and she had time to talk to me. Finally a voice of reason. She made room for me in her clinic the next day (Monday). It was with her that I learned that S. aureus means Staph A, not Strep A. OK, different bug, same bad. She looked at my knee and was not sure how to proceed. If it is swollen because of the infection, I'd need IV antibiotics, and that means hospitalization. If it was swollen because it is reacting, or for some other reason, then I can take oral antibiotics and go home. She didn't know, so she called an orthopedist in the hospital, and set me up to go see him.

I got to him, all the way on the other side of the hospital grounds. He took some fluids from my knee... nah, that didn't hurt AT ALL! No siree! (wehhhh)
It turns out that the fluid was not infectious, and my blood test was within normal limits, and I had no fever, so I got home (four hours later) with oral antibiotics. WHEW!!!!! With our trip to the states coming up days later, hospitalization and IV's were not on the agenda. I wish this could have been taken care of the week beforehand when I went to the ER to get it done *then*. Oh well. Everything at the right time.

I am on a sulfa-based antibiotic. It's the 4th one on the list of what this staph bug is sensitive to, but the first three I am allergic to. Hopefully it'll do it's job. It is wiping me out, that's for sure. I am so, so exhausted, and it's making me dizzy also. Quite unpleasant. Makes me feel weak, tired, weh. It's a seven day course, so I'll be on it until next Monday night, at which point I will no longer have a staph infection on my skin graft, RIGHT? Right! This has been going on for over a month.

The knee is still hurting, and still swollen. Only time will tell if it heals with the antibiotics, or if something else sinister is going on there. I haven't really had knee problems. I'm concerned that it may be PVNS tumors, but I'm not jumping to conclusions. Can't do anything about anything until I get back.

So, I have started on my new migraine medicine, Topomax. I am ramping up to the dose that the neurologist recommended. I have hopes that it'll work, and that the side effects won't make it too hard to stay on! I have a few new tricks up my sleeve for SOS when a headache does start to come on, and so far they have worked. I have stayed out of the ER for migraines now for a few weeks, so that's good. They have started up a few times with me, but as I said, I have new tricks up my sleeve that actually work! One of them I can't use in America, though, I don't have a license for it there. We'll see how things go.

So there are a bunch of things going on now, medicines changing, antibiotics being taken, hopefully this wound on my graft will close, and we're flying tomorrow. It is such a long trip.... we're flying with a stop-over in Moscow. Six people, lots of suitcases, everyone with two passports. Lot's to remember.

And I'm just so tired. I just want to see my Dad already! And my brothers, of course, and cousins, and everyone else there. But the trip is a hard one. It's so, so long. And the infection is right where the thigh bends, makes it very uncomfortable to sit for too long. I wish I could just click my heels....

So, you'll hear from me next over there!
Bye for now!
(BTW, we have a house-sitter this time, so I am much more at ease! )

Thursday, July 20, 2017

Infections and head-trips

I'm a mess.
I mean a real mess.
I don't know where to start.

I always force myself to under-react when I have "symptoms"... of anything. That is because I over-react so inordinately in my mind, because I've been through NF. You can't imagine what a mind trip that can do on a person. I mean, I know you guys know me, and read what I write, but I can't really say strongly enough how messed up your head can get after having had NF. I read about it on my NF Facebook page, also, so I know it's not just me. It's crazy. Every little pain, or cut or scrape-- is this the one that is going to send my body overboard again? Are there any demonic bacteria in there?

I really think that anyone who has not gone through it cannot relate. I know you want to, but I'm telling you, it is so awful to be prisoner to this thinking.

Having said that. now I'll tell you where it's coming from.
I've had a little skin opening on my skin graft for a few weeks now. It's happened in that place before, and it's also the same place I got cellulitis before. It's a part of the graft that didn't "take" after the skin graft surgery, so it healed funky, with folds and weird scar tissue. Happens to many people with skin grafts.

But when there are folds in skin, it can remain moist there, and can get infected. I'm really careful about soaping it up in the shower, and gently drying it with a Q-tip afterward. Sometimes it chafes and gets rashes. Now it's cracked open, and leaking out pus all the time. I've tried topical antibiotic ointments and it didn't work. The thing remains open and sore. It doesn't seem to be a spreading infection, though, at least by the looks of it. It is red all around it, but not spreading.

Yesterday while I was bending down, my knee suddenly was really stiff and quite sore.
Today it was a bit worse-- stiff and sore. Also today I am so extremely exhausted, I could barely get out of bed.

Now this could be a zillion things...
1. I just spent three busy (and good) days in Jerusalem with my friends from the US, and I'm exhausted from that because I pushed myself a lot.
2. my knee has some arthritis in it anyway, we know this, that can cause pain and swelling.
3. I am taking a teeny tiny dose of the medicine that is supposed to eventually replace my sleeping pills (which don't work anymore) and that could be having effects on me.

But I immediately jump to dark conclusions.
I don't know if you remember, but I tested positive for MRSA a few times. I picked it up in the hospital while caring for my friend, Sabrina (z"l). Seems I'm a carrier. No big deal, it wasn't making me sick. But with an open wound, a person who is MRSA positive can have the infection enter the wound. That is a big deal. Then it can become systemic. So here I am thinking that there is an infection going on inside which is not visible, and is causing my knee to swell because it is becoming systemic. That is a very big deal. That can be the beginnings of sepsis.

There is also another infectious looking thing on my graft in another area, and I thought it was one of the pins which holds the mesh in place trying to get out. It's like a boil-looking thing. But I looked up what MRSA sores look like, and it looks like it may be that. I don't think it's a pin trying to come through.

I did make an appointment with my doctor for Monday, the earliest she was available, but I'm thinking I may go into the clinic tomorrow because this is making me crazy. I wouldn't see my doctor, but I'd see a nurse, then a doctor, and maybe start on antibiotics. I want them to test the discharge from the skin graft opening, I hope they listen to me. I need it swabbed. The "system" is notorious for not listening to patients, though.

I did a little research today on the web about MRSA, and none of it is good. Some people had to be on antibiotics for a year before their infections passed. These are people who felt pain in their joints after an infected wound of some sort, and tested positive for MRSA. OK, I'm just not going to do more research, I've already wasted too much of my life on infectious diseases.

While I was in Jerusalem, I had an ear infection come and go, also. I think my body is fighting something. Anyway I'll start the process of finding out what tomorrow.

It's just such a head trip to have gone through something as heinous as NF. Convincing myself to under-react because my head is exploding with over-reacting to every little thing.

Speaking of a head trip.... my head sent me on another trip to the emergency room last Friday. We were in another city, up north in Tzfat for Shabbat when a deadly migraine hit. I had just sort of gotten rid of one Thursday, but I guess it didn't really totally go away. Friday was visiting day in the sleep-away camp where Azriel is, and I got up at 6am to take the train to see him. My family had gone up north on Thursday by car, but I couldn't go with them because of the migraine. By late afternoon I felt something Not Good happening headache-wise, but I still had hopes of staving it off. When we got back to Robert's cousin's house, I took all sorts of stuff for the migraine, and tried to rest. Nothing worked.

We had to drive on Shabbat, which of course we never do unless it is an emergency. And, well, it was. I could not take the pain anymore, I was nearly blinded again by that migraine. We got there, they gave me the steroids and Phenergan, we spent four hours there, then got back to Robert's cousin's house for Shabbat. Never a dull moment.

Let's hope I'm just over-reacting about all this infection stuff.

~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~

PS- my talk at AtoxBio was an amazing experience for me. I had never told my story from the beginning with such detail to a crowd (small crowd) of people. We cried together. Three of my kids were there, too, as well as Robert, and I saw tears in my kid's eyes, too. They appreciated me, and got to put a face to the disease they are trying to create a medicine to combat. It was very powerful. I want to do it again somewhere else! I want to spread awareness about NF, it's the doctor's that need to know what to do. This drug would only be effective after diagnosis of NF, of course. I was in the hospital for three days in horrendous pain with no antibiotics and no diagnosis or treatment plan. That can't happen. Also, the people at Atox were enlightened as to how much this disease can change a person's life. I spoke about all the diseases and problems I've had since NF, and most people had no idea how much this can change a person's life.

You know what? Mostly I am missing the old "me" these days. The healthy me. I miss her.

Sunday, July 9, 2017

Migraines, camels and pain, oh my!

One week later and I still have the bruise left in my inner arm by the iv medicines for my migraine last Saturday night. It got *so bad*, I could not wait this one out. It was traumatizing by having two so close together which were three days and three nights long. When last week's migraine came, the pain escalated fast, and by 10pm Robert was driving me to the hospital, with me feeling like there were daggers in each eye.

We didn't get home until 5:30 in the morning. What an ordeal. It took two hours before I got the medicines, and the migraine pain kept escalating. It was a busy night at the ER, and I was not a priority.

Then yesterday, barely one week later, I felt another one coming on. My friend from childhood was here for Shabbat, and I was so happy to be with her and her sons, but yet a headache crept in. I decided to kill it as best as I could, I'd take all the medicines that I'm not supposed to take. But what are my options, really? Knowing it could last three more days is just too much. I cannot just wait it out. So when it was just barely coming on, yet I knew for sure what was happening, I took many pills. Advils, Tylenols, and later Optalgins and more Advils. I did not want to wind up back in the hospital, and could not bear to wait it out for another Gd-knows-how-many days. I am nobody's hero by holding myself hostage to pain. The pills knocked it back enough that I got to sleep (throwing in an anti-anxiety medication, also, because I couldn't sleep, because of RLS (restless leg syndrome; a nerve disorder), and I don't have meds for that specifically, but a friend and fellow NF survivor told me he takes anti-anxiety pills and it helps his RLS.
Like that run-on-sentence? I don't feel like fixing it. :)

Sleep (or more precisely, lack thereof) is still a big problem, and I'm sure sleep deprivation may trigger migraines. I'm working on it from many angles.

I did go camel-back riding, though! Like I mentioned before, my childhood friend from NY is visiting, and I took them to the camel farm nearby. Last time I got up on a camel was before the surgery that "fixed" my right hip, and the following day I was in terrible pain. I was hoping, since this time is after that hip got "fixed", I'd be better off. Well, the ride was fun, but near the end (an hour long camel ride) my hip started screaming at me. When you are on a camel, there is nowhere to adjust your position. This one I had to ride out. I tried to move my leg to a different position, but I thought I'd fall off! That would have been bad. So yeah, Friday after that adventure I was in pretty heavy pain, but I rode it out. At least it was having fun that caused it, and not something more sinister! But yeah, I think camel rides are out for me. It was fun, but hurts too much. My hips just are not sewn up that way.



Ya'akov making a friend
My view of the camels... I was last in line!


A cool thing is coming up on Wednesday... I've been invited to give a talk about my NF story at a pharmaceutical company in Tel Aviv! I've never spoken publicly about my NF story, believe it or not. This drug company, AtoxBio is working on a drug to quickly stop NF in it's tracks (if you go to the site, click on "pipeline" to read about their research for the NF drug). They invited me as an Israeli survivor of NF to give encouragement to their researchers, so they can see how devastating NF can be, and how worthwhile their work is. I am going to tell my story. I'm nervous! But excited. This company is going to hopefully put a drug out there which would prevent all the damage I went through, and possibly prevent sepsis (which is what causes organ failure, which I had). The drug is in phase three, which is the last phase it needs before marketing. I'm sure I'll have more to write about after the talk! It's going to be Skyped to their other office in the US, also. I am curious about so much with this, I don't know a whole lot about it. I'll write what I can about it afterward!

I'm still taking Homeopathy, seeing the Osteopath, and seeking out other opinions about the ongoing issue of the infected gland I have near my NF wound. I saw a specialist about it last week, and he is sending me to yet another specialist (I'm the hot potato here again). The next one I can only see in September because we are going to the US, so let's hope I won't have to majorly deal with it while I'm away.

That's it for now. Mainly ongoing treatments, therapies, migraines, and pain, but my mood has been good, thank Gd. I feel I am finally getting out of the horrible depression I had after my mother passed away, and then also my dear friend Sabrina, may their memories be blessed. There is heatwave after heatwave here in the desert, and I am finally able to start seeing the sun. I just beg for long-term relief from the migraines, God. That's what I need desperately.

Monday, June 26, 2017

A non-soothing prose

Upheaval.
Quiet and dark, throwing up in the throes of migraines.
Three days and three nights each... twice, two weeks apart.
No medicines to control them, ride it out.
Ride it out, ride it out.
Feeling that it will Never End.
Desperation.
Quiet and dark, but not peaceful.

A life of discomfort and pain.
The occasional day of fevers and flu-like symptoms.
No answers, ride it out.
Sleep on it, either it will get better or worse, but avoid going to the doctor.
Except sleep... it's as elusive as a day without pain. It just doesn't happen.

Did I say avoid going to doctors?
In the meantime I am driving all over the country to find help.
Yes, I do see doctors, many of them.
Too many. It's exhausting.
I'm searching for relief.

Natural therapies are slow and intangible at this stage.
But I am doing them. Homeopathy.. so far isn't helping.
It's going to take a while, I am patient.
The promise is that my body will learn how to heal itself.
But there is so much damage.
Osteopathy is infrequent, the practitioner of vacation recently.(but I will go to Jerusalem and see him on Wednesday)

Vocal rehabilitation every Sunday morning, also slow, no noticeable progress.
Lots of traveling, lots of hoping.

I am either at a doctor,
or therapist of some sort,
or at home suffering, or exhausted.

Living with pain alters some part of the brain, I'm quite sure.
I take no pain medicines, my body having rejected many of them over these 10 years.
Even when I'm not in pain (I can be in pain but not suffering)
I am down... depressed.
I don't have the answers why, but as I said,
Living with pain alters some part of the brain.

You see me, I look fine, healthy, happy to see you.
That's also true.
Short lived, though.

My oldest son graduated from high school, got his drivers licence.
My other three kids, finished for the year.
Transitions.
I need my quiet, it is challenged now.
More clothes to wash, kitchen with constant crumbs, sandwich toaster always out, tomato sauce splattered all over the stove.
Rice burned at the bottom of my favorite pot.
I want to scream, but I lost my voice.
I lost my scream voice.
I quietly state my standards.

The kids are older, more independent, but in transition.
I'm *that* mother that doesn't control their cell phone/computer usage enough.
Daughter texts for too many hours.
Sons play games endlessly.
I don't have the strength to entertain them otherwise, or to stand up to opposition.

This is life.
This is life after NF... the week that changed EVERYTHING.
Every cell known and unknown to man was changed in and around my life.
I just want to reclaim those cells. I keep trying.
But they are scattered in hospital rooms and hallways.

.