Monday, March 30, 2015

Reaching the end of my strength

As I reach the end of the Fentanyl, my strength seems to be giving out ahead of schedule. I still am wearing one small patch- the smallest dose without cutting the patch in half- 12mmg.

I went back to Jerusalem yesterday to see the naturapath I had tried to see last week. This was my second trip to try to see him. This time I knew he was in, though, because he had called in the morning (yesterday) to let me know he'd be in and can see me if I wanted. I thought about it for a while, then decided that yes, I'll give it another go. I did get very strange vibes on the phone, but I decided to go anyway because I know he has helped some very good friends of mine.

This would be only the second holistic practitioner I have sought in my almost-eight years of being caught in the throes of conventional medicine.

The long and short of it is that it was a very negative experience. The first mistake, he said, was that he didn't ask me a few questions before I came in, like, what am I looking for? What is my main complaint? He said he always speaks to patients on the phone before making the appointment to find out if he is the person they are looking for. He didn't do that with me, even though we spoke on the phone twice before I came in. He knew nothing about me. He said he doesn't know why we didn't have that conversation.

He basically said that my problems are out of his league.

My main complaint that I put on the table was that I am suffering from insomnia, digestive problems, and intense fatigue as a result of weaning off of narcotic pain medicine. Of course his next question was "what sort of pain do you take it for?". Then I launched into a very condensed version of my almost eight-year saga. I showed him my latest two-page version of my condensed medical history from my GP. I showed him my recent blood tests.

He had never heard of NF!!! Heard of flesh-eating bacteria only in the news, and he he didn't know the medical term for it. Obviously PVNS was also a new one for him. My medical history scared him. I told him that what he is looking at on that page is my history, I don't *have* those diseases right now. Now, I am in need of repair. My body is trying to detox and I am suffering. He didn't hear me, he just kept focusing on the papers in front of him and telling me that my "stuff" is out of his league.

He said my blood tests show markers for liver, kidney, red blood cells and iron to be way off. I knew that. That's why I was sitting there. I practically begged him to look at me as a whole person, not just a sum of my medical history. He said "you are a victim of medical science". Whatever that means.

It stung.

We ended off with him giving me some basic detox dietary foods, and he said he'd pray for me. He also said he'd make a few phone calls to other practitioners he knows to see if he can help me through other people. He didn't take a fee.

I walked out of there (thankfully with a great friend accompanying me!) feeling so damaged and broken.

My friend and I went to a restaurant which we both love, not so far from his clinic, and talked. And laughed.... she always gets me laughing, it's such a gift. We can be pretty funny together. We should take it on the road.

Of course, Murphy's law had it that the rail system that was supposed to get us back to the central train station in Jerusalem was not in operation at the time we needed it. There were "delays". We had to hike large hills to get back to the station. Taxis were nowhere in sight. I wish I had known that would be the case when, upon arrival in Jerusalem three hours beforehand, I chose to walk to the naturapath's office instead of taking the rail. I wanted to walk, it was downhill, I felt good, and my friend was game also. I didn't know that we'd need to walk back the mile or so at the end up hill. Wouldn't you know it that just as we were approaching the central station on foot, the first rail train since the delays, showed up at the same time. I was walking so slowly, and with so much pain, that it took almost an hour to get to the station. By the time we got to the station we caught the last direct bus back to Be'er Sheva. Didn't sleep a wink on the bus (my friend did, so it was a long. lonely bus ride). Got home at 11:30, profoundly exhausted, and in pain.

Insomnia and RLS (restless leg) set in. I was so insanely tired, but the insomnia is ruthless.
I have stopped taking the Cannabis because it was giving me headaches every day, all day.

For a long time now I have been falling asleep around 4:30 or 5 am, and sleeping until about 11. I go to sleep at a normal time, take a sleeping pill, and nothing happens. Take another sleeping pill an hour later, nothing. Sometimes three sleeping pills work, but they are spread out so that I don't fall asleep until dawn. I have never suffered from insomnia, except for when I was pregnant, and that is par-for-the-course with pregnancy. I am loosing footing dealing with this.

I was supposed to see my GP this morning, but I couldn't get up. I plan to go into Soroka on Wednesday to see my neurologist; it's impossible to get an appointment with him, so I'm just going to wait outside of his office on a day that I know he is in. I need to check-in with my medical practitioners; it's been a while, and I am not doing well. I'll see my GP later this week, I hope.

I've been in bed all day. Passover cleaning needs to get done, and I am useless. I couldn't even go to a funeral of a friend/community member today because of it all. I always am there for people in their time of need- especially at funerals. Well, I guess my own time of need is breaking down my door.

PS- the naturapath *did* call today with some ideas of tinctures for my liver and kidney, and with the name of a "healer" who does body work. I'm not sure what that means, and I am freaked out by it all.
He also suggested I take high doses of vitamin e and magnesium.

I just want to turn over and go back to sleep. I am overloaded and depleted.
Four days until Passover. Gd give me strength.

23 comments :

  1. Just something about insomnia...it is a hard spiral to get out of. Tossing and turning causes more of same. If you fall asleep at 5am try getting into bed only at 3-4am and see what happens. Try moving it back 15min or 30min every week until you are at an impasse or hopefully in sync with your family. You are trying to normalize lots of things at once and understandably you are frustrated that things aren't going according to plan. Have you tried acupuncture?

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    1. no, haven't done acupuncture. As i said, I haven't branched out into holistic medicine because there is just **too much** out there. Overwhelming. Everything is overwhelming.

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    2. acupuncture saved me when everything was out of whack and I got kicked out of Miyun Nashim. Left treatmentless and going crazy. Took a long time but if you have someone good at the very least you may feel more relaxed and hopeful. Because of acupuncture haven't taken an inhaler for my asthma in 15yrs. my skin syndrome is liveable... but it drains you of energy for a few days after each tipul. I am now 2 yrs. on break and it has held up for the most part. You need something which is gentle on the body and nonallergenic which is why I was referred to acupuncture at the SHIRAM alternative clinic at Assaf Harofeh.

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    3. can't deal with anything today. Overwhelmed. Thanks for the info.

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  2. Insomnia is so not fun. I'm dealing with it again and it can take normal days and make them feel unbearable, emotional, and ... fill in the blank. I have written posts numerous times about my insomnia and things my doctor has told me. Each time they didn't go through, for some reason. They were too long to re-type and maybe they weren't meant to be. Sometimes the recommendations for how I am supposed to work through the insomnia are so hard because I am so tired.

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  3. As usual, all i have to offer is lots of hugs and empathy. sorry it's not more. love you, Bracha​

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  4. Oh Sarah. Sending a big strong quiet hug ooo

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    1. Thank you, doll. Looking forward to having Pesach with you.

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  5. Sad to hear. I wish you to get better and to enjoy Pesach.

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  6. Sarah, I hope things can only go up from here! And luckily, you're almost at the end of the fentanyl, and thus you'll soon be released from a lot of these horrible symptoms. You're doing what many people can only do in treatment centers, so it's not surprising that this is deeply difficult. You are a very, very strong person, my beloved cousin!! I find your naturopath experience very interesting. I too had a very underwhelming experience with a naturopath a few years back. I doubt I would go back to another one - I ended up feeling the approach was very haphazard. Recently I came across the blog of an ex-naturopath who claims that they are trained from a very anti-scientific point of view, and that a number of the treatments they prescribe have actually been shown to be bogus. This woman had taken $250,000 in loans for her education and then left the profession almost immediately thereafter because she felt so strongly that she wasn't going to be able to help people based on her training. Yipes.

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  7. Hang in there. It will get better.

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  8. missed you at tai chi today. hope you are feeling better.

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  9. I was sad to miss it. Couldn't get out of bed.

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  10. I just wrote you a note on the blogsite and then it wouldn't publish. I just wanted to say that I love you. I can't tell you anything you don't already know. But I can send my love and kisses and pray for your health and happiness. I am always trying to find a positive spin on things. Sometimes it is really hard. But look, with insomnia at least you'll be awake for the whole seder!

    Love from Netanya.
    Miriam Green

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    1. Thanks honey. I like your spin on that.
      Also the insomnia means that I can drive longer distances without feeling sleepy. I plan to go back to a therapist/healer who I used to see in ramat Bet Shemesh. She is an old friend, from before I got sick, and I feel that she is the right one for me right now. It is getting so bad. "It" is so many different things. Haven't been out of bed since Sunday. I doplan on it soon, today. Crazy, right? Me. With a house of Pesach cleaning to do. A low point, indeed. I know it will pass, and i know I'll be smiling at the seder table (thankfully we are not preparing seder, but joining friends instead. A little less pressure.)

      Thanks, my friend. I hope you are hanging in there, too, with your be-in-the-moment situation at your mom's place. I love you.
      Sarah

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  11. How disappointing about the np appointment. That kind of experience is so deflating and depressing. I hope you get the strength you need (or the help from friends) to prepare for Passover. It's Easter for us and we talk a great deal about Passover in our own zillion hours at church. I'll be saying special prayers for you.
    MM

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  12. Hope you get the help you need soon and in the meanwhile, the strength to get through the day to day.
    Judy

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  13. עברנו את פרעה נעבר גם את זה.... Sorry don't have anything more constructive to add, it does sound like the guy you went to didn't know his stuff though. I don't know if this is at all relevant to you, but I have a friend here in Modi'in dealing with severe chronic pain issues, to the point of being bed ridden and on massive doses of morphine, she's found that the biggest non-medicine help has been hydrotherapy and watsu, just given her amazing relief and helped her to move more smoothly.

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  14. I want to thank everyone for your loving support and warm fuzzies. Please excuse me not responding to individuals, but you know I'm reading and appreciate every word.
    Sarah

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  15. Thinking of you Sarah. Chag sameach.

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  16. Dear Sarah: I know Passover is when G*d freed the Israelites from slavery. May He also free you from slavery to pain/medications. This is my prayer for you. I hope you manage a meaningful and celebratory holiday with your family and friends without suffering. I don't understand all the requirements for your holiday, but in my house, if the floor didn't get cleaned, or the beds weren't made, or the laundry piled up, oh well. We would celebrate anyway. I hope you are able to do that as well.
    Hugs to you, my friend!
    Jackie

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    1. hi Jackie,
      It's a bit after 4am at the moment, and insomnia is keeping me company.
      Pesach here is pretty elaborate. The kitchen has to be taken apart and put back together. every inch of the fridge, oven, stove, and cabinets have to be cleaned. the house has to be super-organized (we are having guests, of course), and all laundry done because we are going away for the week of the holiday.

      Having said that. my husband does the kitchen in entirety.
      I do whatever parts of the house i can do, and the kids help in their own rooms. By late afternoon today I was able to get out of bed, shower without fainting (which I thought I might), and do a fair bit of cleaning in our basement, where it needed it most. Our house guest is coming in the morning, and the guest quarters were a mess, and dirty. it took me all afternoon. Shifra did the playroom to perfection, and I scrubbed the bathroom down there. Things are under control for her to come tomorrow. I am flippin exhausted, and dealing with insomnia. Insane.

      I am planning on going to the neuro clinic tomorrow to check-in with my neurologist; the one who set me up with the Cannabis and is supposedly supervising my weaning from Fentanyl. It is getting *that* bad. I am dizzy all day, every day. and have headaches most days. Insomnia sucks, and I have to see him to know if this is normal for withdrawal, or is there something wrong. I haven't lowered a dose in two weeks, yet the symptoms are not letting up. I feel like I must have a brain tumor or something, but I know logically that that is just fear talking.

      Wait- you don't celebrate Passover== what holiday were you referring to?
      On Passover, we are obligated to get every bit of leavened bread out of the house, and switch plates, cutlery, pots & everything over to Pesach stuff. It's a huge job. It'll get done, it always does.

      Thanks for writing, I like your prayer for freedom from pain and pain meds. AMEN.

      XOXOXO

      Sarah

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