Wednesday, December 10, 2014

The plot thickens

It does seem like my body is happy to be lowering the dose of the Fentanyl. Yes, there is pain returning, and yes, it is hard. I am dealing with it stoically, I think, because I keep telling myself that it is temporary.

Exactly how temporary, at this point, is up in the air. We've come upon a big hitch in the plan.

After leaving four messages, and also speaking directly with Dr. Davidson's secretary 10 days ago, it seems that my attempts at communication were put on a back burner, and the gas ran out. What do I mean?

At my appointment with Dr. Davidson, we left it that I would enquire with my pain doctor, Dr. Z, about whether or not he (Dr Z) will put in the request for the Cannabis, or if Dr. Davidson would. The difference being that I could be treated in Be'er Sheva if Dr. Z could do it, but if now, I'd need to be treated in Jerusalem by Dr. Davidson.

A few days after I saw Dr. Davidson, I saw Dr. Z. At that meeting, Dr. Z informed me that he isn't professionally able to submit the request. He doesn't have the right licencing to request Cannabis for a patient of his. OK, fine, so then I knew that Dr. Davidson would need to do it.

The very next day I called Dr. Davidson's office. No answer, left a message. No return call the entire next day. I called the day after that. No answer left a message. No return call the entire next day. I called two days after that. At that point I actually got to speak with Dr. Davidson's secretary, who is also like his right hand [wo]man, so to speak.

I laid it all out clearly, and had her repeat back to me what we spoke about, and what is needed. I reiterated that she should tell Dr. Davidson that he does need to submit the request for Cannabis (which, if you remember, can take up to 6 weeks to clear), that Dr. Z cannot do it. By the end of the conversation, I was quite sure that we understood each other. She repeated back to me exactly what I needed.

Then I waited. I waited for her to call me back saying that the request has been submitted to the ministry of health, and we are now in the six-week waiting period. The call didn't come.

I called her back, left more messages, with details this time on the recording. I needed her to know exactly what I am talking about so there is no confusion at all.

I finally heard back from her, after I had left three or four more messages; this being after we had spoken and gotten things clear.

She had this to say:

"Dr. Davidson received your directions, and has no problem following through with the plan to start me on medical Cannabis. In fact he had planned to, but did not get a chance to, and now he is out of the country and will not do any work until FEBRUARY."

....ummmm..... excuse me?.........

me: "I spoke with you over a week ago to move forward with this submission for the Cannabis request. Why was it not done?"

secretary: "yes, Sarah, I realize that. All I can do is profusely apologize that it didn't get done. To my regret, there are many, many things that did not get done before he left. You are right to be upset.

me: "Well, if he is simply out of the country, it doesn't really matter, because he can fax in what needs to be done, no? That is what he would do anyway, right? It's not like he physically goes to the ministry of health every time a patient needs a request for Cannabis. Why can't he fax it in? Or even you, yourself can fax- or snail mail- it in, that would even be quicker than February, no?"

secretary: "No, I'm sorry, that is not possible."

me: "Why?"

secretary: "That's just the way it is. I apologize again. I will make you a new appointment for February."

me: "Listen, you can't play around with this timing. I am weaning off of my narcotic medicine, and my pain levels are increasing. I understood that it would be 6 or 7 weeks, and in that time I'd reduce my narcotic medicine so I could start the Cannabis. What am I supposed to do until February?"

secretary: "It seems you will have to slow down the weaning process. Time it for the end of February instead of the original plan."

me: "Excuse me, but that seems just wrong on so many levels." (at least that was my intended snarky comment, not sure if it came across in my less-than- snark-able Hebrew).

secretary: again, I apologize. I am only trying to help. We'll see you in February?

~~~~~~~~~~ end of conversation ~~~~~~~~

Isn't this ludicrous? I mean, what happened, did he get arrested or something? Perhaps a family crisis, who knows. It doesn't make sense at all that he would have a trip overseas without any taking care of his business beforehand. Something is up, but until further notice, this is the situation.

I told Robert about it. He immediately suggested we get in touch with another pain doctor who was recommended to us through a good friend. This one is also in Jerusalem, in a different hospital. I thought that was a good idea. By the way- the wait to get into the pain clinics here in Be'er Sheva is three months minimum, so going private is the only real way.

OK, so the very next day I called that doctor.

The situation stands right now that I put in two calls to that doctor. They weren't answered; I left two [electronic] messages. Gonna try again tomorrow, and possibly leave my third message. I'll also try other extensions and see if I can get a person to answer.

I need an appointment (which will cost a bundle) and I hope he will be able to submit the request for a licence for me for the Cannabis.

Where does this leave me regarding weaning off the Fentanyl?

What is going ON here!?

Thursday, December 4, 2014

One neurologist can turn it all around

Wow, talk about tikun (תיקון). That word- tikun- is a very important word for me. It is a Hebrew word; a concept. It's a philosophical concept as well as a spiritual one. I could link a Wikipedia article explaining it, but that wouldn't really do it justice. Simply put, the meaning of life is for the service of tikun. It's the concept that we are here to fix the spiritual flaws in the world. There, now you know that I know the meaning of life. :)

I go into it quite a bit deeper in my book, so I'm not going to delve into it here. I want to use this space today to tell you about what happened at the neurologist appointment I had this morning.

This appointment was a follow-up for the migraine evaluation. It took many months to get this appointment; this particular doctor is in high demand. I started having powerful, intensely painful, immobilizing migraines after I recovered from NF. I had a normal MRI & head CT (thank Gd). Over the past year, I decided to get the migraine situation evaluated to see if anything can be done, I was given a few different medicinal options, but none of them worked consistently.

What happened at this appointment is an exact tikun to what happened at my orthopedist appointment; written up in my last post.

The orthopedist and the neurologist, in essence, said the same things, but I walked out of the orthopedist in tears and feeling defeated with no hope, and from the neurologist appointment with optimism and an entirely new approach to my chronic pain. I did cry while sitting with the neurologist, but it was tears of HOPE.

I have so much to tell you, I don't know where to start.

I'll do a little juxtaposition here, so you can understand by example.

Orthopedist: You have a very low pain tolerance, and you take narcotics for a problem that should not need any pain killers. No other patients who have this problem take narcotics. You take too many medications, making surgery and general anesthesia are too dangerous for you. I am not going to treat you anymore. [what I heard: you are a hypochondriac and a nut case who wants more and more narcotic medicines, and I am not having any part of it].
Do physical therapy for your problems. There are no solutions.

Neurologist: People who go through heavy medical traumas often have a heightened sense of pain. It is a reaction of the nervous system after an experience like you had, where the body went into shock.
We all search for a way out of pain, it is a natural human reaction. Opiates can help us find relief from pain. The problem is that they also lower the overall pain tolerance. That, in turn, causes us to use higher doses of the opiate. It is a viscous cycle.

Post-traumatic stress disorder on the level you suffered also takes it's toll on the nervous system and raises the level of chronic pain, as well as a myriad of other possibilities, including migraines.

Your body and nervous system, along with psychological issues, must be treated together.

Therefore, here is what I purpose:

1. Wean off the Fentanyl, it is destructive to your overall healing. (He was so pleased that I am on that path already).

2. I am setting you up with my best physical therapist so we can get you moving- really moving-again. This particular physical therapist is someone I work with and knows my methods. It is a woman, also, if that is an issue. (the doctor is religious, also, as I noticed because he wears a kippa) The sessions will be here in Soroka, unless it is too much of a trigger for you to be here. We can do another venue if you need. (I can't describe the emotions I have about him saying this- someone who *completely understands* what post-trauma is about. It is nothing short of a Godsend. Fortunately, I am fine with having appointments in Soroka, as long as I don't have to go near the surgical ward "A".)

3. Along with the physical therapy, I am writing a referral for hydrotherapy. Are you OK with pools and water? (what a question, right? I am a Pisces!! Pour it on!).

4. After a period of time, to be suggested by the physical therapist, I'd like to you join a walking group here in Soroka. Walking is not only for the body, it's also for spiritual well being. (remember- this is a neurologist here...) We have daily walking groups lead by a physical therapist in my program.

4. I run a group meditation course. The goal is to be able to self meditate to overcome pain, including when you feel a migraine coming on. It is 8 sessions of two hours each, and it is a very specialized program which I built. It works. You'll have to practice three times a day to incorporate the method. You'll have a recording, and eventually you won't need to listen to it. I want you to join my next group forming at the end of this month.

5. Since you take psychiatric medicine and have no psychiatrist at the moment [I haven't had a psychiatric follow-up in years. I don't like the person I had so I stopped going], I'd like you also to have therapy sessions with a "medical psychiatrist"- a psychiatrist who is trained to specifically help patients who have had medical traumas. There is a long wait for these practitioners, so I can't get you in until June. In the meantime, you will be doing these other things, and you will be able to start real healing.

----are you, my dear reader, crying yet? Wait- there is more.----

I then told him about Dr. Davidson, that not only am I lowering the dose of the Fentanyl, but the plan is to go on a new medicine for the pain.
Firstly, he knows Davidson very well, turns out they are good friends from when this neurologist worked in the same hospital as Davidson does now (Hadassa Ein Karem).
Secondly, he is completely on board with the new medicine plan. I am going to share that with you now. I have been waiting for the right time, and I know that the time is now.

I will be starting to use medicinal Cannabis.

There is a lot I want to say about it. I want to tell you that researchers and developers working with the Cannabis plant have isolated the chemical that causes the familiar "high" that people think of when they think of Cannabis, and have been able to remove it, in large portion, from the medicinal Cannabis. That means that one can get the pain control benefit, without the "high". This is an incredible development because the high prevents one from driving, and in general can change a person's reactions and general functional abilities. I am going to be taking it in the form of oil drops, no need to smoke.

Dr. Davidson actually suggested it to me four years ago when I first saw him. At the time, I couldn't let in the idea of taking any sort of narcotic, or anything that has dependency and/or addiction possibilities. Shortly thereafter I started seeing Dr. Z (my other current pain doctor) and started on Methadone. From there, as you know, it was long months and years of experimentation to try to control the pain. The Fentanyl, at varying doses, and it's side effects, has been my constant companion for 3 years.

I want to tell you that I am very nervous about starting Cannabis. It is not like Fentanyl, or any other medicine, in that the dosage is arbitrary, and one has to sort of experiment until the desired pain control is achieved. I am afraid of Cannabis in general. (I wasn't afraid in college, but that is for another book. :) I am afraid that I'll be in pain for too long with no way to control it.

I want to tell you that I am afraid of the stigma that medical Cannabis has, and how you are going to react to me. I am afraid of judgement, although I know it doesn't matter what anyone else thinks of it.

Lastly, I want to tell you that I am *optimistic* after this amazing appointment today. Can you believe it? When was the last time you heard me say I am optimistic about the future of my health situation?

Tikun is an awesome, phenomenal experience when one experiences it in day-to-day living. What I mean is that usually these kinds of things, experiences that have undertones and overtones of being a witness to the repair of the spiritual universe, aren't available to a regular person like me every day.

Almost every hurtful thing my orthopedist said to me, was turned around today by the neurologist.

  • "You have a low pain tolerance" = heavy medical traumas, and opiates, have the effect of heightening pain.
  • "go do physical therapy" = we're going to get your body moving with very talented physical therapists and a specific program to get you back to health. Eventually you will be going on long walks.
  • "You take too much [unnecessary] medicine" = reducing the Fentanyl will be beneficial for your body. It is possible that you experience more pain because of it. It's great that you already started the process.

The last thing he said to me, at the end of the appointment, was
"I want to know you are playing your horn again by the time we finish here".

Are you crying yet?

Saturday, November 29, 2014

The scary but sure tunnel of change

"You're not exactly a candidate for an award for the "best surgical outcome". There is no way, no matter what you say, that I am ever going to operate on you again. We are talking about putting your life at risk, and I am not going to have any part of it."

"After the last time we saw each other- in which you were red and swollen [at the surgery attempt when I became allergic on the table]- I thought about it and decided that I will not operate on you."

My orthopedist of almost 6 years could have told me this before, that he had already decided there will be no surgical fix for my right thigh joint, at least not by him... before I trekked up to Tel Aviv on a rainy day last week.

Before he said his piece, I had started the meeting by telling him that I am not sure about doing the surgery, that I wanted to discuss it with him. I told him about what has happened recently regarding pain, and the new ligament "twang" that is happening and making me crazy (to which he told me to "go get physical therapy").

Then he told me I have a very low pain tolerance; that people walk around for years with a torn labrum and impingement in their thigh joint and are not on narcotics. "With the medicines you take, I am not going near you with general anesthesia." It was an insult... that I am on narcotic pain meds at all, and that what I walk around with shouldn't hurt.

Low pain tolerance?

(%#*)_+*&^%#@ EXPLETIVES & INSULTS aimed at doctor *&^%#&(#+$@I*^#%!.

I am at such a loss for real words for anyone who can sit with me in a room and say to my face I have a low pain tolerance. (never mind that it is a man, who hasn't experienced natural childbirth- not once, nor the three times I have... and a c-section while having three other little ones to take care of). I know childbirth has a different sort of pain scale, but still, just wanted to throw that in.

*YOU*, Dr. orthopedist, walk around just for one day with exactly what I feel and then say that.

Seven years ago, when I returned to the hospital four days after the surgery which eventually led to NF, a nurse said to Robert that the fact that I was in so much pain, four days after the surgery, was because I was spoiled and have a low pain tolerance. Nobody else would need morphine for this. The next day, the raging infection which was causing the unbearable pain almost killed me.

I am not saying now, Gd forbid, that I am presently in mortal danger. I am saying that those words should be TAKEN OUT of the lexicon for doctors and nurses. It is such a slap in the face, you can't imagine.

I reminded the orthopedist that I went on the narcotics before my right hip was impinged. That "there are other reasons, if you will remember, for me to be dealing now with chronic pain." I then told him that I am presently in a long-term plan to lower the Fentanyl, and that is one of the reasons I have more pain recently. He wasn't even listening at that point. Just typing with a look on his face that says "I have cut you off, I'm typing this letter up for you for the last time".

Oh, he also told me that he was sorry that he operated on my left hip for the impingement. I said, "but you know it helped, right?" The fact that it is torn and impinged again isn't his fault, it's nobodies. Sh*t happens. At the time, it was clear to me that he was trying to help. Now he is sorry he did. Thanks, buddy.

My orthopedist dumped me. (sounds funny when I re-read this while proofreading it.) 
No mistakes about it. Clear as day.

The doctor said that I am free to find another orthopedist if I want, but he is out of the picture.

Basically afterward I felt like a lost cause, screwed up, and insulted.

Thursday (two days ago) I took off another dose of the Fentanyl. I am marching through this plan, trying to stay strong in the storm. I now have 68mmg of patches on me, and the high point a few months ago was 87.5mmg. Making progress, but living with more pain. It'll get worse this week before it tops off the next week. I am taking off about 6mmg every two weeks, like Dr. Davidson suggested. I am awaiting the approval for the new medicine, which should come in around the time I have gotten the Fentanyl down enough, hopefully. Dr. D said it should be, at the highest, 40mmg, but 25mmg is optimal. Then I'll start on the new medicine and slowly wean off that last bit of the Fentanyl in tandem.

I wonder how life is going to be when the Fentanyl gets that low. Each time I cut down a dose, I am scared, proud, strong, fragile, unsure of my decisions, and trooping through to the next phase, wherever that will be. I am also in sort of a gray zone about the new medicine- if it'll help, what will the side effects be, how will it change my life? The Fentanyl certainly changed my life, now I am looking toward another pain-relief medicine with all it's question marks and uncertainties.

At some point, when I am ready, we'll discuss the new pain medicine plan. I'm not ready yet. I think I want to know that I am actually going to keep following through with lowering the Fentanyl, uncovering more pain, walking through the scary tunnel of change. Part of me wonders if it is just going to get too painful for me to continue following through. Actually, Dr. D said to me that if that happens, to call him and he will prescribe something in the interim to keep things more in control.

Life has been hard. Very hard. But there are good things, too, Very good things. I just don't write about them much because I really use this blog to get out the hard stuff. I'm sorry that you bear the brunt of that, but it's better than living with this stuff inside me, and having no outlet for the emotions that arise as fallout from being through what I have. That, together with knowing that without the blog, my friends wouldn't know what is going on with me, and I am not the type to explain it. I keep it inside usually. My usual response to "how are you", if I know the person is reading my blog, is "perfect!". I'm such a card.

As a side note, I find myself somehow feeling closer to picking up my horn again and starting to play a bit. My former partner from the orchestra- the other horn player- calls me occasionally to feel out where I am with playing. There is tons of orchestra work waiting for me when I am ready. This last time he called, two weeks ago, he dropped some composers and names of pieces that he would need extra players for, and that I would love to sink my teeth into.

But then I say, who am I kidding? I can't commit to watering my plants on time, how can I commit to a real job with expectations? Sitting for rehearsals and concerts for so long at a time, having pain while I am supposed to be concentrating on musicianship and what it takes to play in an orchestra. Never mind needing to practice for a few months just to be at a decent level again. Nah, that's just not in my cards. Isn't that just... sad?

But maybe I'll pick it up again anyway. I'll let you know.

Sunday, November 23, 2014

The usual: pain, surgery, medicines. Who *IS* this person who used to be Sarah?

I am supposed to see my orthopedist on Wednesday in Tel Aviv. I honestly don't know what to say, or if I even should go. I mean, he's an orthopedic surgeon. If I am not going to do surgery, then why go to the appointment?

I am the one who initiated the appointment, I scheduled it about a month ago. At the time my left hip developed a new "twang" in it, every step I take. The "twang" was awful, and it lasted a few days straight, *every step*. Can you imagine how annoying that was? It didn't hurt more with each step, but it made more pain at the end of the day. So, the twang kept on for a few days, then faded back into the scenery. Now I get it occasionally, and it is **SO** mega annoying. I have a feeling it is something like a ligament stretched.

The right hip- the one I almost had surgery on in July but it got canceled when I had the dramatic allergic reaction on the operating table- that one- hurts so much now. I feel it more now since I am lowering the dose of my pain meds. It is the right one which hurts consistently more now. But again, if I am not going to do surgery, why go to the orthopedist?

I just had a little conversation in my head that went like this:

head: well, you probably should go back to him because things were left up in the air last time when you saw him, having allergic reactions on the operating table. That was the last time you saw him.
me: true, but it's not like he is wondering what happened. He doesn't give my case any thought until my file is in front of him at my appointment. It's not like his office gave me a follow-up appointment or anything.
head: But you are really not sure if you should do the surgery or not.
me: So I'll go to him when I am sure; if I decide to do it.
head: just go. Ask him about the new twang, if it is something to check into or not. Tell him about the allergy testing and the cellulitis that followed. Maybe you need a new MRI to check out the twangy thing,
me: I just had an MRI in August. It's not time for a new one. There is no point in going unless I am going to reschedule the surgery. That's all he wants to know.

With that, my head got quiet.

I am not having much patience with this medicine lowering. In order to start the new medicine, I am supposed to go way down from the one I am on now. I take 75mmg now of Fentanyl, and Dr. D said I should be at around 25-40mmg in order to start the new med. That's a lot of lowering dose and uncovering pain.

Maybe I should try to be patient and just do this one thing- concentrate on lowering the dose of the Fentanyl. A little bit every two weeks. Why think of surgery now? I'm not really considering surgery, but maybe I should go to the orthopedist just for a follow-up, after things were left in July sort of hanging in the air.

A tiny part of me *is* considering surgery, though. It friggin hurts, this problem in my right hip joint. Less pain meds will mean it'll hurt more pretty soon. If I do the surgery, then maybe it will be less painful overall in the scheme of things going on with me. Ah, who knows.

I am still not sure if I'll go to the orthopedist. Ill let ya know.

Tuesday, November 18, 2014

NF, the gift which keeps on giving

This is what I have right next to me at the moment (Azriel and Henry the turtle). Yum.

Yesterday I had to present myself before a jury of sorts (4 doctors) to be evaluated for eligibility to receive a government stipend reserved for people with mobility difficulties. It allows for extra for devices, or helpers necessary to get around. I need it because it is hard for me to travel, so when I go anywhere without the car, I must use cabs. I also need to hire someone, like I have had for years now, to do much of the driving load that is on me. I pay for that out of pocket, of course. I simply get depleted by pain and fatigue when I do all the driving. Since the school year began almost three months ago, I have been doing all the driving, and it is really, really hard on me. I could use a stipend to help pay for someone to take some of the burden off me. Of course, I'd have to *find* someone first. The person I had last year, and the one we had over the summer when I was in the States are both otherwise employed now, and have no time to come help out.

I was waiting for my turn for the hearing, which came after three very obviously handicapped people- two in wheelchairs, and one on crutches. I walked in, on my own two feet. I knew what to expect, I had done this three times before. Once I received the stipend (I was on crutches right after a surgery), and twice I was rejected. I'll be rejected again this time. I was bullied, really. They wouldn't listen to me about why I am applying for this stipend. They did not even open my paperwork I brought (and spent over an hour to put together from my home files), or look at my MRI. The one doctor, the meanest and the dominant one, told me to get on the examination table. He proceeded to manipulate and maneuver my legs with such speed, I thought I'd faint it hurt so much. I yelled out at one point, but he just put that leg down and yanked and bent the other one hastily. I was literally in shock, and, of course, searing pain. After that exam, I was told that I'd get my answer in the mail. They didn't even ask me why I think I need this stipend, and didn't glance at my medical papers. I told them, in very short, with only one doctor looking me in the eye that both my hips have a torn labrum, and are impinged, but the dominant doctor cut me off, disinterested. I tried to say that I cannot, any time soon, do surgery to fix these problems because of the high chance of infection, cellulitis, and lymphoedema. I tried to point out that my recent surgery had to be canceled because of a reaction I had on the surgical table, which lead to cellulitis. Each time I spoke, I was cut off. I wanted to say that it is difficult, sometimes not possible, for me to put on socks and shoes, and event to cut my own toenails. I wear a lot of slip-on shoes because of this. Robert sometimes helps with foot needs that I cannot do. These are the things that people get stipends for, I will not get the stipend because they didn't let me speak, the doctor who manipulated my legs saw that they move normally, no matter how it hurts (pain is relative). The people before me took long interviews, and were indeed unable to get around by themselves. I am, in no way, thinking I need the same stipend they have, clearly, there percentages, based on need. I don't look sick, I walk by myself (thank Gd), so I was dismissed. I can't explain why I got so upset about it, but I did. It held over to today, as well. I just have been feeling like crying all day. It somehow triggered the feelings of isolation that happen when your world is not like other people's world, but it looks just like it is. I yearn for it to be like most people's normal, and am not always able to accept my normal. Getting the stipend would be an acknowledgement that indeed, I am in a difficult situation, and coping with it costs us out-of-pocket financing on a regular basis (not that this stipend would cover those fees, but it would help). Getting the stipend is also emotional; I was written off, not even given a chance. Doesn't that just stink?

I'll update about my appointment last week with the new pain doctor in Jerusalem. New/old, that is. I had seen him twice about four years ago, then decided to stop going to Jerusalem for follow-ups with him because I started with Dr. Z here, in Be'er Sheva. As I think I stated before, Dr. Z & I are at a bit of a crossroad, and it isn't clear if he can continue to accompany me on my chosen road. I feel quite "un-accompanied" by him, actually, in the process of weaning off the Fentanyl.

The Jerusalem doctor (Dr. Davidson, "Dr. D" for short) read the notes from my previous visits. Then we talked about what has transpired since then. At the time I left him, I was not willing to try his suggestions for a pharmacological (narcotic) approach to pain relief. I was hoping on a neuro-muscular simulator which would effectively numb the nerves which cause pain. He is the best in his field (anesthesiology) for that. Unfortunately, I wasn't a candidate for that procedure.

I didn't want to go narcotic. So, in place of narcotics, he suggested some sort of bone strengthening medicine mainly for arthritis sufferers, which is actually available over-the-counter in America. I don't have arthritis. I tried it for a few months, didn't do *anything* for the pain. I also started on Lyrica at his recommendation, which I stayed on for a year or so, but the dose needed to be raised higher and higher in order to keep up with my body's resistance. I maxed out on a safe dose for the Lyrica. I then switched to Gabapentin which was very bad for my kidneys, and gave me awful tremors in my hands. Switching, switching, eventually got to narcotics. Started out with straight instant-release morphine, then months on Methadone (which had quite awful, painful side effects), then the Fentanyl (in the morphine family) for a few years now, with ever increasing doses. I told him why I want to go off the Fentanyl, and he supported it, explaining clearly how to do it. I needed that. He told me that it's not important to go off 100% if I have too much pain, that we can start with a new medicine even of I'm not fully off the Fentanyl.

My personal goal *is* to get off Fentanyl, but I can already see that the dose I have already lowered (I did go the next step lower the night after that appointment) has resulted in more pain, plain and simple. How much can I do? Well, I hope to continue, a teeny bit at a time, with hardly any side effects. He had some suggestions if difficult side effects/pain do come about, but with the way he suggested to lower the dose, it shouldn't effect me badly. It is *very* gradual, small gradations of cutting my dose, with one to two weeks between each lowering. I have about six weeks to get as low as I can without suffering intolerable pain because it will take that long before the approval comes in for the new medicine.

I wish I could go off Fentanyl and not go on a new medicine... although this is the medicine which has been recommended to me for a while, without the side-effects I suffer now.


But, I know, at least for now in my life, it's not gonna happen. My legs just hurt too much. I cannot maintain any sort of fulfilling life with constant pain. So that is the program for now... keep lowering the dose of Fentanyl until I decide it is enough, and start the new medicine when the approval comes in, which could take six weeks. After I start the new medicine, I may continue weaning, and finish the Fentanyl, but we have to gauge it as it goes.

The next issue is about the mysterious unexplained fevers which have happened. My lymphoedema massage therapist is reticent to continue moving fluids around my lymph system if there is infection there. She wants me to see an ID (infectious disease) doctor. I don't want to. If it happens again that I have a day with a fever and no other symptoms, I will go check it out. As of now, I am looking at those two days (three weeks apart) as not part of my regular picture. I'm not counting them as significant. The day I have the fever is *very significant*, of course, because it goes pretty high (38.5 Celsius/ 101.5 Fahrenheit), and I feel intensely lousy, but then it has broken in the middle of the night while I woke in a sweat. Happened twice. I decided that three strikes I'm out, and I'll go see the ID doc. At this point, she'd probably say that nothing can be done, keep watch on it. I don't need a whole morning wasted waiting in a waiting room and seeing the doctor to hear that. I already wasted all morning today at Soroka hospital needing to get fitted for another pressure bandage for the lymphoedema. Seems it's gonna be permanent. Two more fittings and measurements have to happen, then it has to be custom made, and I'll probably get it within a few months.

Going to the hearing for the mobility stipend ("va'adat nayadut", ועדת נידות), being mistreated, one whole afternoon spent while leaving the two kids home alone. Lymphoedema issue, one of many mornings spent in Soroka instead of writing my book. Medicine dose lowering, dealing on a daily basis with more pain, while nothing in my schedule changes to accommodate for it.

Tomorrow I go see Dr. Z, that will take a chunk of the morning as well. Not much book writing can happen these days, I need to know if Dr. Z will be on-board with the program that Dr. D suggested so I can do the follow-ups here, rather than Jerusalem. If he is not, which may well be the case, because he has not yet been supportive of the new medicine for me, I'll have to change completely to Dr. D, spend much more time traveling (and recuperating from traveling), in order to get the medicine that I need.

I also need to find a driver who can do the driving for me with picking up the kids from school and taking them to their activities every afternoon. The person just needs a licence, I can supply the car (and appropriate insurance, or course), if need be. Yes, this is fishing... anyone out there to chomp the bait?

As I have often said before, NF is the gift that just keeps on giving.
Can you tell I'm not in the best shape these days?

Some wise words from my writing mentor.