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

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.
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.
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.


Friday, June 2, 2017

I WILL HEAL. Something has got to work.

So much is going on... lots of changes. I am working hard to heal myself, and all the time not feeling well at all. I don't know what is wrong, but I have been feeling really lousy/achey/fevery lately (but no fever).

I started writing this blog post many days ago, I lost track of when. I'm going to just take pieces of it, then continue on with more present things going on.

(this is from late last week:)
I felt so traumatized after that shot last Monday. Totally defeated and beaten up.
On Tuesday my abscess acted up. It acts up whenever new pathogens are introduced to my body and my lymph system has to fight. This time it was from the shot for the MRA. It was swollen, red, and I had a fever. That lasted for two days, and by Thursday I was a bit better. But, Thursday was my last day of taking my migraine medicine, so I had withdrawal to go through, so no rest for the weary.

I chose not to go to the hospital to have the abscess taken care of surgically (I was told to do that). I have many years of experience, and I'd know if I was in any real danger from infection. I was too traumatized to enter a hospital knowing something on me was going to get a surgical procedure. Also, I am not convinced that I need that procedure. The cyst/abscess doesn't look like the pictures of the same thing I've seen on the internet. Anyway, I literally was too traumatized to go. I have decided I am going to try to take care of this (and other) problems with homeopathy. I've never really given it a true try, and it is time. I will do almost anything to avoid having this abscess drained surgically. It's an awful two procedures, and will open me up to infection over the course of weeks. Not good. So, tomorrow morning I am going to a wonderful homeopath. She is also the same woman who did my lymphatic draining the first two years after I had NF. My sister-in-law is a homeopath (but they have a policy not to treat family), and they know each other. I know I'm in good hands. :)

I had the initial interview with the homeopath team (two partners work together), and it was really really intense. It lasted three hours, and then I had to answer a questionnaire in an email afterward. Homeopathy is about much more than healing an illness based on symptoms. It's about your whole life and history that got you to this point in your health. It's true integrative health.

(Skipping back to the older writing:)
So guess what? I am off my migraine medicine, which is good and bad. Good because my hands will soon stop having tremors, but bad because I am not covered for migraines. (and I've had a few whoppers since then...)
But what does feel cool is that now, I think I am on the least amount of prescription medicines in the whole 10 years since NF. I am on only two prescription medicines. I find that amazing. I'd like to get off the sleeping pills, and it will happen at the right time. Then only one would be left. Amazing.

There is a lot going on... it's hard for me to keep track of everything. But today I had an important meeting with a speech pathologist regarding my throat click. The ear, nose, throat doctor I am seeing about that is in Rechovot- Kaplan hospital, so I went there again today.

So, the ENT had ordered some tests so he can try to work out a treatment plan, if any, for the problem. It's not just that I have a click in my throat every time I swallow, but I am also losing my voice. It is getting worse and worse. I can no longer sing out of my speaking range... nothing comes out. I used to be quite a good singer... sang in choirs and everything. This losing my singing range started after my last surgery, last October, on my hip. I'll remind those who may not know or remember, but something happened either with the tube in my throat, or with the position I was in during surgery, that screwed up my throat. Hasn't been the same since.

I had a CT scan of my throat, and the results of that could also explain the numbness I have in my arm and fingers and why I have had to [temporarily] stop playing horn. There are bone spurrs, and many protruding disks in my cervical spine (neck). Basically from C1-C7 is completely messed up.

The ENT also confirmed I have vocal polyps (which I've had for 25 years, but there are more now), and need to never raise my voice, talk less in general, and less on the phone. Lot's more texting for this girl! Our house is so big, though, it's going to be hard to break the habit of raising my voice to call the kids around when I want to. I've already texted two of my children within the same house. This oughta be interesting! But all jokes aside, this has been scary for me, slowly losing my voice.

Then he said this:
"have you been to a neurologist about the numb fingers?"
"why not"?
"because I can't bear to open another can of worms. I'm too traumatized."
"has an orthopedist seen this CT?"
"Because orthopedists suggest surgery and I can't bear it anymore".

"OK, listen Mrs Klein my dear, I need a report from a neurologist and an orthopedist who have seen this CT. I understand you are scared, but just because someone suggests surgery doesn't mean you have to do it. I very well may have other therapies that will work for you, but I first need to make order out of all the issues going on in your neck and voice. It could be that the "click" is from the skeletal issues in your neck, it may not be. I need more information. And I want you to be able to play your horn again. That's my goal."

Funny, I told him, because my neurologist said that to me also years ago at our first meeting when he was helping me go off the Fentanyl. He said his goal was to help me to play music again. So, my ENT said we're on the same page.

Thing is, the Homeopath advised not to go to the neurologist. She said "for what"? He has to make a diagnosis and treatment plan, and it'll be medicines or surgery, and you don't need another diagnosis hanging over your head". I understand that, so at this point I'm waiting.

Yesterday I saw an Osteopath for the first time. Osteopaths also do integrative medicine, many also work with Homeopathy, and Chinese herbs, but they concentrate on aligning the body to function at it's best. I need need need to stop the numbness and tingling in my fingers coming from the left side of my neck. It's not a good thing. I cannot play horn with that happening, it exacerbates the problem. So I had to leave the orchestra I was volunteering with. Makes me sad, but I also feel intuitively that it is temporary. Please Gd.

I got an osteopathic adjustment yesterday. It was really intense, and somewhat painful (OK, very painful in some spots), but I feel this guy knows what he's doing. He came highly recommended. He looked at the CT of my neck and said "wow, what a mess (but in a tone and manner that was not judgmental at all). I'd like an MRI". I'm going back to him next week to do another adjustment- neck, back, hips. He also said that when the body is in alignment, the immune system works better as well. I have optimistic hopes with these therapies I am trying! (and I have to ask my orthopedist for a referral for an MRI on my neck...)

I have recently found myself digging deeper into "why is it every time I try to get back into life, there is a road block with my health getting in the way?" I have asked many people on my NF support group, and nobody else (so far) seems to have the problems I've had since NF. There are people who do have problems, but not like mine. Some got NF because of diabetes, or other problems, but not many people I have come across have ongoing health issues for many years. I am so ready to MOVE on and live life to the fullest... I just can't understand why my body isn't letting me.

But I did do a birth! :) On Monday my friend's daughter went into labor, and she called me for some advice. I gave advice over the phone, and said also that I was free for the evening if she wanted me to come over for a bit to asses things. Her daughter said *yes* that she wants me to come over. So, off I went! I got to their house, and there was the lovely lady in the shower. I half got in with her, and helped her with her contractions. We stayed home for a few hours, then it seemed clear to me that she was almost ready to give birth, so off we went to the hospital. We got there, and she was already 10 centimeters dilated! Yay! Perfect. She had the baby in 15 minutes afterward. And *that's* the way to do it, uh-huh. :)

Did I pay for it afterward?
Uh huh. :(
I had a fever the next night (Shavuot), and a migraine the following morning. But when the migraine ended I did get to go to her house and visit with them. That was awesome. Mommy and baby are doing great, baruch Hashem. But with me, those things (fever, migraine) might have happened anyway, so at least I got to be at a birth!

So, Sunday I go back to Kaplan hospital for the vocal therapy, then Wednesday to Jerusalem for osteopathy. And at some point next week I'll hear from the homeopaths and they will give me a remedy that they think will help me.

I just wish I understood more about what is going on inside my body.

Tuesday, May 23, 2017

medical abuse

I should have taken more of a hint when the guy before me came out after getting his hip injection yesterday, and he passed out.

My turn for the injection came up, and the nurse kindly told me "don't be frightened by what you saw when he fainted, he's a boy, you know how guys can be" [I am NOT making this up]

The injection was for the purpose of getting contrast dye into my right hip joint to do a special kind of MRI called actually MRA (arterial). The big long needle goes right into the hip joint so the contrast fluid goes into the artery.

I've had this test before; I had it two years ago, before I underwent surgery to repair the hip. I had it done privately at that point because there is such a long wait for this specific test with the national health fund (cupat cholim). I thought I knew completely what to expect. First the small injections to numb the joint (local anesthesia like what you get at the dentist), then the big 'ol needle shot into the joint, while directed under a CT machine so the doctor gets it in straight. Like I said, I did it before.

This time I did it through cupat cholim because my private insurance wouldn't pay for it. I had to wait three months, but I wasn't in a hurry.

Guess what? NO LOCAL ANESTHESIA FOR YOU at cupat cholim! It was *insane*. It went something like this: The doctor (or nurse?) prepped the injection site, and I couldn't see the area. Then she said "you'll feel a little needle now"... of course, I was thinking to myself that I am getting the anesthesia now. But *no*... SURPRISE! Huge needle goes straight into my thigh joint and doesn't stop... deep into the joint, I felt every millimeter of it. I screamed. I yelped again when the doctor had to move it to get it into place. She raised her voice at me telling me not to move. Then again when they injected the fluid through it I couldn't control my expressions of PAIN being inflicted. I felt every little movement. It was horrific. I started yelling at the doctor- "why aren't you using local anesthesia? Last time I had this it was with local anesthesia! She asked where did I have it done, and I told her- the private hospital in Be'er Sheva (Assuta Be'er Sheva). She said "oh, well that's private, what do you think? It's not done here." That's all, just "it's not done here".

I didn't faint, but I was in a helluva lot of pain. The MRI afterward went fine, but my thigh joint Hurt. So. Much. It was hard to stay still like you have to do for an MRI.

Today, one day later, I am still in pain. I don't know if there is anything else different than the first time, because I think it didn't hurt so much after the anesthesia wore off the first time. I think the doctor hit a nerve or something.

Because that is what is missing in my life, more nerve pain.

I am also feeling kind of fevery today, praying that this whole thing hasn't triggered my abscess to come alive again. Or that the needle didn't deliver some sort of pathogen or bacteria. Gd forbid.

What would it take... five extra minutes to deliver local anesthesia? Ten?
I am very upset that I feel abused and battered again from doctors.

(a special thank-you to TI who drove me there and back, and supported me throughout! xo)