Friday, March 11, 2016

Strong and struggling

Sometimes I feel that something is Really Wrong. Other times I am so energized and able-bodied that I feel I can take on the world. And, when I feel those times, I do take on as much of the world as I possibly can. I've been working-out at the gym, and basically doing everything normal. There is that word again... it's a rather judgmental word, actually, right? I mean, nobody is normal. Only to *us*, "everyone else" is normal.

But since I've gone through much more, medically speaking, than most people, when I have ongoing symptoms, I have a tiny voice in the not-so-far-recesses of my psyche that something Big may be going on. Yet, I often choose to ignore it hoping it will go away. I have seen too many doctors, had too many surgeries, gotten too many diseases, and had too many scares to go dashing off to the doctor every time things are not quite right. Some may think quite the opposite- that I'd be the one to go dashing off to the doctor with every little symptom. But I am fed-up and jaded about doctors, and their tests. I've had enough surgeries, heavy medications, pain, infections, and rare diseases in the past eight years... it'll be nine soon... and the medical tests that go with that stuff, to last someone about 12 lifetimes. I am at the point that avoiding more conversations with doctors and more tests is my goal. To that goal, I am taking many vitamins and minerals (which I never used to do- I hate taking pills), trying to keep a good, balanced diet, working-out in a very healthy way, and trying my best to keep a good attitude about life.

But I gotta get to the bottom of what is going on with me.
I don't want to. I hate going to doctors, and I hate all the tests. Have I said that before? Ive been through too much. Today, while talking to Robert about my now-daily headaches starting first thing in the morning and lasting usually throughout the day, he asked me why I haven't seen my neurologist. My answer: I don't want to. He's an awesome person and doctor, I just don't want to chase him down to get in before my June appointment. I don't want to talk about problems and medications, go through tests. I know he will see me earlier- my history with him is that he will take me and give me a full consultation if he can, just when I pop my head into his office during his office hours. He was amazing during my withdrawal from Fentanyl. I just don't want to chase. I don't want to need anything medical. I am tired of it.

I need to get off the [eight years] of sleeping meds- I think that is a major cause of the headaches. I could be wrong, though, just my own theory. One of my doctors told me that the withdrawal from this sleeping pill (in the valuim family) may be worse than the withdrawal from the high doses of Fentanyl (morphine family) I was on for five years. I am so scared to make a real plan to start weaning from the sleeping pills. I'm actually terrified of it. And there isn't much I'm terrified of. I know that the times now that I have tried to cut down a teeny bit of a pill, I can't sleep. I've tried numerous times. My body *cannot* get into a deep sleep without the sleeping pill(s). It all started eight years ago when I had post-traumatic stress disorder (PTSD) and couldn't sleep at all, and was having horrific nightmares. A well-meaning psychiatrist put me on sleeping pills. I asked if I should take one on an SOS basis, and she said "no, you take one every night. That is the only way to get your body sleeping through the night again". And thus it began....

The past week, the first thing that goes into my digestive system in the morning is... Excedrin. I wake with a headache. Before this week, Excedrin and Zomig (my migraine medicine) have been part of my almost every day. My headaches are getting intolerable and more frequent.

That, along with two months of a consistent cough and sore throat, and I know I should be doing something about my health, but I don't want to. Don't worry, though, I will.

Remind me how is it that I question myself when it comes to the fact that I am not working at my careers?

Shabbat Shalom


  1. Giving you strength to get to the doctor and pursue this. Love you!

  2. You are an incredibly strong and positive person -- a model for us all -- and you will overcome any health obstacle that comes your way. And you have many, many people who love you who are at your side throughout the journey.

    1. Jeff, thanks for your words of support! I'm feelin' it.
      "Every little thing is gonna be alright..."

  3. Hi Sarah,

    It is good to hear that you are finally beginning to feel like yourself on a regular, long-term basis, even if there are still issues to be sorted out and even though some of those issues may be serious.

    It seems to me, from your blog post, that you are now, on a more-or-less regular basis, getting a good night's sleep - even if the sleep is chemically assisted. For years, you have not had that so, in the past, trying to get off the sleeping pills (please correct me if I am wrong!) was a case of going from 3 hours sleep a night to no hours sleep a night. If that is the case, it is unsurprising that you are panicking about going back to no hours sleep a night. If you are now regularly sleeping well, it might be different, although you might well have to put up with periods of sleeping badly as you reduce the dosage. Perhaps the thought that dose reduction means sleeping badly will be less panic-inducing than the thought that dose reduction will mean not sleeping.

    I am going to give you some questions to consider. If you have already done so, then feel free to ignore them.

    1. Is your sleep any better on the nights when you have gone to the gym? If so, would it be worthwhile trying to up your exercise when you decrease your pill dosage?

    2. Is the pill uncoated? If so, is it possible to shave a bit off with a knife? One scrape on nights when you haven't exercised, two scrapes on nights when you have? (Obviously, this is something that you will need to discuss with a doctor you trust.)

    You are a very sensible person; you know your own body. I am sure that you will listen to all the well-meant advice and then make a good decision.

    By the way, I do not blame you for wanting to stay away from doctors and tests. In my limited experience, I hate their hurry-up-and-wait and, even more, that the doctor's visit is on one day, this test is on the next, that test is on another day. Oh, and the doctor forgot to give you the form for the test the specialist required you to have, so you have to see him again, which means more delay... However, if it's getting worse or not going away, it is worth considering the hassle.

    I wish you a good week, with continued improvement in your health and spirits.

    All the best,


    1. Hi Jeanette,

      Thanks for your thoughts!

      In general, yes, having smaller issues to contend with is quite a blessing. Life is feeling better in general, than it has, I think, since I got sick. Baruch Hashem!

      The sleeping issues are pretty bad, though. You had said that you understood that I was more or less having full nights of sleep, whereas before I wasn't at all. Well, no. It's comlicated, but what I know is that any time I try to reduce the sleeping pill dose I cannot get to sleep at all. I eventually I take one just to get to sleep.

      Everything changed during the time period I was weaning off the Fentanyl. While I was still on the high dose of Fentanyl patches, I was constantly sleepy. I almost fell asleep at the wheel while driving on too many occasions. It was easier to fall asleep at night, but I still needed a sleeping pill. Or sometimes just a half of one. I got full nights of sleep then (but had many other negative side effects from the Fentanyl).

      When I started weaning, I got hit with an awful withdrawal symptom of insomnia. It was really awful. I heavily relied on my sleeping pills at that time to remedy the problem, and I got my body used to taking/needing a higher dose of the sleeping pill to fall into a deep sleep.

      Since the Fentanyl weaning, my sleeping hasn't gotten back on track. I have been off it for long?... at least 7 or 8 months. I still need high doses of the sleeping pills to get to sleep, but they don't last me through the night. So either I wake up at 2 or 3 and don't get back to sleep till about 5, or take another half sleeping pill at that time and get back to sleep. Either way I never feel rested, or I sleep far into the morning and lose my mornings.

      Yes, the days I go to the gym I tend to be more tired, but it still seems that if I cut out a quarter of a pill, hoping that my tiredness will make up for it,I don't get into a deep sleep, and wind up taking another half pill a few hours later just to get to sleep. I can't get to the gym every day, and I can't get there later in the day because I am with the kids in the evenings, but I do what I can.

      I just intuitively feel that I am getting almost daily headaches because my sleep isn't the right quality sleep, because of the pill dependence. I've done a fair bit of research on this particular sleeping medicine, and what it does over time, and I think that is what is going on.

      I could try shaving it down, that is a good idea. When I was weaning off the Fentanyl, I had a little chart of lines, showing me where to cut the patch. I could maybe do something like that. The sleeping pills are not coated, and are easy to break in half, or into quarters. I just haven't started any sort of program yet for weaning. I think I am emotionally preparing myself to do it, but I'm not yet.

      Thanks so much for caring and putting your thoughts down! Nice to hear from you. :)

      All the best to you & yours!!


  4. Hi Sarah,

    And (as you know) it's when the worst problems have gone away that the smaller issues get really annoying.

    I had a husband who was prone to migraines and, yes, if he did not get a good night's sleep he was likely to get a migraine, so I would not be at all surprised if your headaches are tied to your poor sleep, the sleeping pills, or both. I read a long time ago that headache pills can cause headaches. It was so long ago that I have no idea whether it was aspirin that did it, or another drug, or what. (I can just hear you saying "Oh, joy, another problem".)
    As you have gone through hell once - getting off the Fentanyl - no wonder you have to nerve yourself up to go through it again. You have demonstrated that you have much courage; I look forward to hearing, in Gd's good time, that you are sleeping without any pills. (I also pray that it is the first circle of hell and not the 6th or 7th.)

    Good luck getting your doctors sorted out. (I do wish they didn't act like they were doing us a favor by condescending to see us.)

    All the best,


  5. Hi Sarah
    Shavuah Tov
    I just read your blog. My sympathy for your suffering daily headaches and migraines.
    Do you have any progress on the throat problem from visiting Mel Litman? Is he dosing you with the vitamins? What does he say about your headaches?
    I hope you are already fast asleep now (it's 12.45 a.m.
    Good night, and be well,
    Your admiring friend