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.


  1. Praying that the new therapies will work!

  2. Wow, what a journey, my darling. May you have clarity soon and heal whatever this all is about. Much love <3 Shuli