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| 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.
I JUST WANT TO BE DRUG-FREE.
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?
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| Some wise words from my writing mentor. |
