Please, don’t touch me.

Everything my Specialists put into me, makes me very, very sick. I make progress, tiny progress, but then lose it all when they come up with another crazy drug trial.
And each time they are become more and more convinced that it will help me.
Because they are desperate to fix the unknown case that is me.

They have this stupid “we have to try everything” approach, but by everything that means every drug on the market, and they refuse to believe that maybe my body needs a moment to rest.

Almost a year of digestive medication after digestive medication, pain killers, antidepressants, antianxiety medication, supplements and now steroids.

I have not slept in five nights, am in excruciating stomach pain and have constant nausea and dizziness.
Symptoms that I was finally gaining control over.
I was eating meals independently, and am now eating zero. Bye-bye to my weight gain and positive thinking.

What if the answer is very simple?
What if I just need a month or two medication free to see how my body adjusts? I do not remember the last time I was drugfree, how sad.
How do you tell multiple Specialists that you do not want to be poked, prodded, used as a guinea pig anymore?

I do not want to be touched, in fear of you breaking me.

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15 comments

  1. I hear what you’re saying….I don’t recommend, normally, ignoring doctor’s orders….but they can’t MAKE you show up. You could just take a vacation. But I fear you’d lose ground on your progress in getting them to work with you when they can’t find anything, ya know?

    Hugs. I have to admit I’ve taken a break in the past and started over.

    Liked by 3 people

    1. I know. I have weighed up options. They are helping me with government letters to get me payments so i fear telling then I want to go au naturale for a while, as they might not help me out with the financial side. They might take it personally. But I am just so so sick from the stuff they are giving me. I do not want to take another tablet 😦

      Liked by 2 people

  2. I can’t like this – I think you should bite the bullet and come off the medication for awhile. Explain to your doctors how you’re feeling about it and that the last thing you want to do is offend them but you think it’s the best thing to do, giving your body a rest for awhile – surely they wouldn’t be so bitter about your decision to go au naturale they’d stop helping with the financial side – although many seem to have sociopathic traits… I’m sorry if I’ve stated the obvious and I hope you manage to get some relief and sleep soon…

    Liked by 2 people

    1. When I got my current doctor, I told him I was going to stop taking all the meds my old doctors had me on. They were slowly killing me and I was sick of it. He said, “Oh no. You can’t do that. You are too sick to stop all your meds.” I said, “Look. I’ll make you a deal, I’m going to fast for a week, then you can come take all the tests you want, and if I am not better than I am right now, I’ll do whatever you say, but I am tossing everything out. If God wants me dead, then He can have me. I’ve been ready most of my life. I am not suicidal, but quality of life is better than length of life.”

      He made me promise to at least drink water. I laughed. Of course I would drink water, but only after I boil it and put some lemon in it. He looked puzzled, and said, “I’m going to be checking on you. If you need help, call 911 and get to a hospital.” I laughed again. Then showed him the door. (He comes to me)

      I fasted for one week, then began to put in vegetable broth and fruit juices slower for another week. When he sent the lab tech out to draw blood and collect urine, he was shocked. He said, “I don’t believe this. Your labs are all good. A lot better than humanly possible” or something to that effect.

      Pharmaceuticals kill you slowly. Sure, there are times we need them, but good grief, we live in our bodies. We know when a drug makes you feel worse than you did before, then stop taking the stupid drug.

      Just my humble opinion. By the way, I’ve outlived several of those doctors who kept telling me I was going to die within 6 months. Of course, I can sit here tonight and say that, as I have a trash can next to me so while I’m throwing up I don’t mess up the floor. Plus, I have an extra package of briefs. This is a hard day. It is still day, right? I might have some bad days, but at least I do have some good days.

      I am starting a positivity post. That is to show what I am grateful for and why. You know, like windows I can open and close at my own will, rather than being locked up where they control the air. I can get to the bathroom when I need to, and if I can’t, no one yells at me that they have to clean up after me. I am grateful for soda crackers. Did you know in the hospital you have to have a doctors order to get them after hours? Of course you know that. sigh. That’s why I’m whining in here.

      Thank you for understanding. I do hope you all feel better and have a good weekend.
      Gentle hugs from the old lady who did turn 70 on the 6th of the month. Giggle.
      Midge

      Liked by 1 person

  3. Talk to them. I have before. There are some meds that are hard to come off of quickly, so the doctors need to help.
    Some of mine I know I need.
    But tell them, all of my doctor’s understood and helped me go off as much as I could….as I said, some I have to take, thyroid stuff, you know.
    But all that…who knows if it’s working stuff..they took me off, I took a break, and we tried different things later.

    Found out the majority of my GI issues are fructose malabsorption. .. imagine, so many of those good fruits and veggies were making me sick.

    Still don’t know what all my vestibular issues are…and I’m on no meds for that unless I’m having an attack. But he is the Dr who signs off on my disability.

    You never know until you talk to them.

    The steroids…did you call the dr? I’m on them too. They tried to taper me off too fast and I thought I was going to die. Vertigo 24/7. Got them to change the dose, and it’s better. Here’s what I would do… If it’s a high dose, tell them you want to taper off…long and slow…now. it is causing more harm than good. Your body can’t take it. You can’t take it.

    Take care of you.

    BTW..got the post up linked back to you. Thanks for the inspiration.

    Liked by 1 person

  4. I just did a Prednisone taper to help my chronic migraines and ended up with the worst migraine of my life! The pain was unbearable, and I had to go to the hospital. I tapered off the rest of my meds during the steroids as well. I needed a break too. So many side effects, and none of the medications helped my migraines at all. I understand that need for a blank slate–for a Reset button on the meds. I was able to do it safely with my doctor’s help. I wish you all the best!! ❤

    Liked by 1 person

    1. Yes, Kelly….that’s what I’m on steroids for right now. and the doctor really didn’t prescribe the steroids right. I even told her it would taper me off wayyyyyy too fast and I’d get sick.
      If I hadn’t had a migraine for 9 day at a level varying from 6-9 the whole time I would not have taken them..but I felt I had no choice.
      my headaches have been better…since I got my PCP to fix the prescription. now I’m tapering down slowly.
      But the vertigo feels like it is just on the other side of the veil.

      i’m so mad at my migraine specialist. She didn’t listen, and when there was trouble she didn’t feel that she should treat my vertigo. What? She caused it.
      She is a new doctor…I see her on the 21st, if we can’t get this snafu fixed, it will be my last visit.
      (I feel I can’t blame everything on her because the whole thing happened over the phone and I’m deaf so my husband did all the back and forth….if I had been the one dealing with the office…I wouldn’t be going back.) Unfortunately, we moved last year and I had to find new doctors. This one came highly recommended from my migraine specialist at Duke…so I’m wondering.

      I have to say…the migraines aren’t gone…but it is better. However, I’ve had 2 cluster headaches since I’ve been on these things, and I normally get one about every 3 months. double ugh.

      good luck with your migraines.
      I hope we can figure this out.
      i’d love to go off of all of those meds and start over….but I don’t see that doctor doing that….I’m really not sure she is the doctor for me.

      healing thoughts.

      Liked by 1 person

      1. So, ladies, I must ask. I’m on hydrocortisone and it’s only been five days. Do I still have to come off them slowly or can I stop them immediately. My dose for the day is 30mg. Doctor wanted me to just cut back dose but I feel so sick, I donMt want to take another stupid tablet 😦 especially when my stomach was under control!

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      2. Is your Rx for something like…this many tablets for so many days, then so many for this many day??
        If so definitely taper off…you will go crazy if you don’t.
        How long are you supposed to be on it…a long time?
        I’d taper off no matter what..
        You can go 20mg for 3 days, then 10 for 3 days…then you should be safe.
        That will be easier on you gut too, not such a shock. You can get really sick coming off too fast.

        Remember I’m not a doc…it’s just my experience. Often. I’ve been on them WAY too often. I’m going to try my best to never go on them again.

        Hope this helps a little.
        Thoughts with you.

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      3. 20mg morning and two 10mg during lunch and evening for a whopping 30mg a day. He told me now to cut back to 10mg morning and a 1/4 lunch and dinner.
        I just feel so ill I want tos top. I’ve only been on them for five days but he wanted me on them for five weeks 😦 doubt i’ll lat

        Thanks for your help (: much appreciated

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      4. Hi Wendy,

        It feels like we are in a crazy medical maze, taking wrong turns and hitting dead ends. I try to start a treatment with an open mind, because our doctors just trying their best to help us. But sometimes it’s just them throwing darts with a blindfold on. Every person is going to have a different reaction to meds. I had a horrible reaction to Prednisone, but at least it has been a catalyst for me to make some better lifestyle choices, to help myself rather than rely on medication.

        I’m so sorry to hear about your negative experiences. I hope you find the right doctor. And I hope your cluster headaches go away quickly. Sending you lots of love and positive vibes.
        -Kelly

        Liked by 1 person

      5. To my beautiful friend indisposedandundiagnosed:

        I understand how you feel–not wanting to take another of those awful pills. I was on a taper of steroids that went like this: 60 mg for 3 days, 50 mg for 3 days, 40 mg for 3 days, etc. My doctor told me that it is REALLY IMPORTANT that I finish the steroid taper, NO MATTER WHAT. I’ve even had some withdrawal symptoms for the past week being off of them. But now I am starting to feel better and it’s getting out of my system. YAY! And now I have *one more thing* to add to the list of Tried and Failed. Luckily, it has been a catalyst for me to make some lifestyle changes that I needed to make, and I am healthier because of it. Life is weird like that. I hope you taper off the hydrocortisone safely and you notice a change for the better. Sending you lots of love and positive vibes! ❤
        -Kelly

        Liked by 1 person

      6. Hey Kell, lovely to hear from you again. I got too sick and my partner had to rush me to a doctor who told me to stop them abruptly. She said they’d make me worse if I was on them, and off of them (withdrawal) but that they were causing my stomach too much damage. Apparently they are a stomach irritant so for people with stomach issues like myself, it’s like giving me poison! 😦
        It has been hell. I have not slept and my stomach cannot digest food. I have gone extremely backwards 😦
        I hope you are feeling better today. Medication trials are the worst but this one is definitely THE worst xxxx

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      7. Oh my dear….I came by on Monday to check on you but see my comment didn’t come through. got a new phone, I wonder if that’s why?
        I’m so glad Kelly checked too and you put up a reply.

        I’m so sorry you had such a hard time with those dang steroids.
        Evil buggers.

        I’m surprised your doctor didn’t know that they can mess up your GI troubles.
        I have some GI troubles…not as drastic as yours…I have to make sure to take those things on a FULL stomach or I’ll get sick, sick. Don’t know why I didn’t think about that when we were talking about this before. I’m so sorry.

        I’m glad to hear you are off of them….and hopefully on the mend.

        I’m stillll tapering off of the ones my doctor put me on for the migraines. I had to do it slower than she prescribed. Luckily my PCP helped me out with that, since the original doctor didn’t feel comfortable treating my vertigo…that she caused. (rolling eyes)
        I keep saying I’ll never go back on them again, and I gave in again. but I can’t beat myself up over it. I do feel better. Both the migraines and the vertigo. But is the trade-off worth it? I’m very confused about it.

        Thinking about you my dear.

        Like

  5. Tell your specialists that you really appreciate everything they are doing for you and how much you value their support, polish their egos first, then ask them what THEY think about you possibly taking a break from all the meds.
    I know from past personal experiences that doctors can get a little upset if I question their authority, but by giving them the chance to make my decisions for me, usually works in my favour.

    Stay strong and keep smiling, even if you don’t feel like it.

    Liked by 1 person

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