when,

will this end?

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62 comments

  1. Yes, sugar. It will. Be sure to get some sunshine, fresh water, and lots of good music. Try to get out of the house from time to time each and every day. Always remember, we are here for you. God is there for you, no matter where you are. Be sure to pray every single day and He can comfort you, but only if you ask.

    One thing that helped me was my positivity journal. I can remember, many years ago, when things were super bad, the only good thing I could think of was toilet paper. When you stop laughing, think about it. Have you ever lived without it? I have.

    Can you tell us 5 different colors you can see, right now?
    Can you tell us 4 different sounds you can hear, right now?
    Can you tell us 3 different things you can touch, right now? and are they smooth, rough, or mushy? Cold or warm?
    Can you tell us 2 different things you can smell, right now?
    Can you tell us 1 thing you could drink right now, and be sure to let us know if it is sweet, sour, or just blah.
    Can you tell us 1 thing you are grateful for, right now?

    Hugs to you, little sister.

    Liked by 3 people

  2. When will it end?? Tomorrow? Next year?? I don’t know but it will evolve and undulate and rise and fall. Over 37 years of illness, I have been to both ends of the spectrum. I’ve learned to hang on to the good times and live them with hope and all the zest I can muster. I’ve also learned to rest, retreat, lick my wounds and wait. One thing I will say is that this disease has made me a person that I can love. I have empathy, I live determined to be kind, I don’t take things for granted, I know I am a good person. I matter… YOU matter… we are learning powerful life lessons from our struggles. The trick is to find the positive lessons and cling to them for dear life! HUGS to you Cass… you are a good person… I can tell:)

    Liked by 2 people

  3. It would be nice to know. An answer is definitive, even if it’s a “no.” Right now what you’re describing in my mind is like a holding pattern, a place of limbo where everything is in a fog and nothing seems certain.

    I meant to post something else the other day, but the comment was getting long, and I don’t like writing long-winded comments on others’ blogs. The gist of it was that in times where I feel like I don’t have control over anything, I have to remind myself what I do have control over. Granted, there are times where even that doesn’t offer much consolation. But the consolation is only robbed when I view things in light of what I can’t do.

    The thing about your power, your capacity to do for yourself, is that one’s focus sometimes determines what its reality is. I’ve read all your posts where you talk about being able to not endure another test with stupid doctors, anxiety-inducing review boards, and depression-fueling aftermaths.

    You’ve managed to endure all of that, and persist in living your life as best you can manage.

    Doesn’t sound like much? Let’s compare your situation to someone else’s. There once was an ancient ruler who, in the span of several years, had conquered much of the known world. In fact, he defeated so many people so quickly that his armies were afraid they’d march to the point of never returning home again. So he went home, he got sick, and all of his achievements (which never were repeated in human history) were for naught when he gave up and died. He couldn’t persist where you have.

    His name was Alexander the Great. Compared to you, he was a weakling.

    Your struggles are not for nothing. They are seen and recognized by people who want to see you triumph. Every post, word, and feeling spent in defiance of what ails you is a victory worthy of praise. Yes, you struggle. But you are not alone.

    Liked by 2 people

      1. awww man! sounds intense! hang in there. you’re a survivor, I can tell…
        my yesterday was better until a trigger was pulled later in the evening that had the house of cards tumble down. today was better, i felt accomplished doing a few things that were productive and even had a healthy and HEARTY cry (didn’t realize how much I needed it until the tears overflowed)… I hope that you’re better today than you were a couple days ago.

        Liked by 1 person

  4. I don’t know, my dear, but the only true thing we know about life is that things change. I hope with all my heart that your illness will end soon. Sending you hugs and a million healing wishes, Q.

    Liked by 1 person

  5. Sometimes I think that “ending” is a misnomer…sometimes, I think it’s an indication that our coping is not working and it’s time to find a new way.

    Liked by 1 person

  6. For me, it’s in death. “For to me, to live is Christ, and to die is to gain” I am not sure, when it will be for you Cass* I think your stronger than me, (I know you don’t like to hear that) b/c of the times you helped me through your kind words.

    I had a bad night last night and was having one tonight, after I read I felt better.

    Prayers for Cass*

    It hurts Cass* I know. For me it’s like a war going on in my mind…

    Be @ Peace…

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    1. We care Cass* A lot of us go through it too. I know nothing can be said if and when you are in your mood, but maybe when your, your real self again these words from your followers (Friends in the illness) will cheer u up. As for now just remember* “You are not your illness” You said it… 🙂

      Liked by 1 person

  7. Darling Cass, I’ve just seen this. Actually came on here to say thanks for liking my Life-Belts and Lead Weights posts – and within a nano-second of publishing it!

    I truly hope you feel better soon, and I also hope that Life-Belts and Lead Weights offers you some small glimmer of sunshine in the bleakness you’re currently in.

    Lots of love,
    L. X

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    1. I know we suffer from different things (well, the symptoms are extremely similar) but everything you write resonates with me!
      Not many people post at this time haha, so I keep holding down the refresh button.

      The pain is bad tonight. I actually had to call my Gastroenterologist to get an urgent appointment on Thursday. I am in excruciating pain and it has been accompanied by nausea which has made me lose my appetite. I just put on weight. I do not want to lose it. I don’t know what else to try anymore… He can’t even help me. It’s terrifying! Anyway, sorry for the whinge. Enjoy your night Lexi (:

      Liked by 1 person

  8. Cass, you aren’t whingeing! Get that thought right out of your beautiful head. I told you I’m here for you, and I am. You have every right to have feelings about your symptoms. We all do!

    I’m glad my ramblings resonate with you 🙂 I wish I had a better magic wand to wave your illness away.

    Yr gastro thinks Thurs counts as Urgent????? What is he, stupid? Get yrself to the ER. You never know, someone there might actually be able to help. You can’t go on like this, it’s wearing you out.

    It’s Tuesday morning here 11.20am) so I guess it’s late Tues night where you are (apologies for the gastro comment if I’ve miscalculated and it’s already Weds night with you, I get confuzzled!)

    Is there any change yet? How are u feeling?

    Much love,
    L. Xxxxxx

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    1. No you are right – it’s Tuesday evening here.
      Oh our hospitals are worse than our specialists. I spent ten days in there recently and they could do nothing for me – so I ended up being kicked out. If I went back, I’d just be sent home. They couldn’t find anything. My blood is perfectly fine. The Gastroparesis is obviously there but they can’t do anything for it, as my body doesn’t respond to medication. So, their advice to me is “stay hydrated”.
      I’m hoping he says something… anything. Although we are running out of options to try. I know he believes me… But he cannot fix or help sometthing that he can’t see. How frustrating! And expensive!
      No change. Pretty awful. Had soup for dinner… just. Amazed I kept it down. I have an Osteopath appointment tomorrow. I have no idea how I will lie on my stomach for an entire hour being massaged. The cramps are awful! Maybe tomorrow will be a miracle and I will feel better. Who knows!
      I unfortunately have to stick it out. I have no option. I think people are starting to think ai am going crazy! xxxx

      Liked by 1 person

  9. What you’re going through would drive ANYONE crazy! Be kinder on yrself, sweetheart. Treat yrself like u wld do a friend you love.

    I’m sorry yr health system sucks. I wish I cld help more. I understand and share yr frustration. I don’t understand the Ozzie system well enough to come up with any useful suggestions 😦

    Big love,
    L. X

    Liked by 1 person

  10. PS When u were in hosp, did they witness the same sort of attack as yr having now? If not, it might still be worth a shot. Plus, it wld add weight to yr meeting this week. They wld see it’s still very much current. X

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    1. Yeah they did. They saw how much pain I was in. He saw me at my worst. I was dehydrated, very underweight… Very sick. I was feeling better stomach wise… Until Saturday. My body did a complete 360. I hope he can help. I’ll let you know how it goes xx

      Liked by 1 person

      1. Please do 🙂 Silly q, but have you tried taking Diorolyte (electrolyte rehydration stuff you mix with a set amount of water, provides glucose and other vital stuff, esp when dehydrated, but helps me with a ton of other stuff. Also, has anyone suggested the natural steroid, hydrocortisone yet? Xx

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      2. Btw, if yr tests keep coming back normal, they aren’t doing the right tests. Fact – if your clutch goes in yr car, and u take it to a windscreen replacement service, do you think the busted clutch would be even spotted, far less identified and fixed? X

        Liked by 1 person

      3. I was exactly the same. And then that rheumatologist stuck his fingers in my tender points…….lol.

        I would have thought that with such specific gastro signs and symptoms, they should be able to work out what’s causing all of it.

        I’m keeping my fingers crossed for you for Thursday.

        Nite nite,

        L. Xxx

        Liked by 1 person

      4. I went to Osteo, had my neck cracked. My stomach is still awful but my gastro guy called and got me in tomorrow morning as opposed to tomorrow evening which is good! Rallied two letters from two specialists for next week… Ate a tiny little bit for dinner.
        How are you today? xxx

        Liked by 1 person

      5. That’s good, apart from your poor stomach, obvs. That still sucks. Really pleased he’s seeing you sooner, and great that you’ve two letters to go. Have you any photos of you looking ill? I find those are useful, because sod’s law will always give you a good day for medical exams, and they need to know good days are flukes.
        Me? Knackered, despite going to sleep at midnight and sleeping through til 7, unheard of for me. My back/hips are still being stupid, and aside from the usual muscle pain et al, I feel sick (I practically live off Zofran and Buccastem these days) and my sinuses are flaring – my mouth feels like the bottom of a dirty bird cage. I imagine it prob smells that way too 😦 Can’t take pharmaceutical sinus stuff (decongestant with ephedrine in) as that raises blood sugar and I’m currently trying to reverse type 2 diabetes by increasing insulin receptor sensitivity, decreasing insulin output, decreasing blood sugar. Sigh. Out with the Olbas oil. Not as handy as pills, but always works in the end.

        Glad you managed to eat a little bit. Have you tried liquid meals like Ensure? (It may be called something different in Oz, but basically it’s a meal in a can, liquid, high protein. They give it to people post-op over here, when they’re having trouble eating, and also to elderly people with no appetite) Have a root around online and see what you can find, if you aren’t already familiar with this type of product.

        Are u feeling any less nauseous? X

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      6. I feel relief from today, but a bit sore.
        I have heard of the liquid drinks but I don’t want to take them. My gastro has recommended against them too. He doesn’t want my stomach dependant, so I have the meals I can. I was eating relatively good over the past week, until my flare up. I try and have mashed foods a lot… Banana, carrot, broccoli (:
        I take zofran too!!! I try not to take it a lot though because it is super expensive down here.
        I don’t have any photos of me during illness. Trust me when I say that I don’t look sick at all! But all of my other documents will cover me. I’m sure of it ! Xx

        Liked by 1 person

      7. PS I love osteo! I especially love the cracking! Lol. Apoarently, it isn’t our bones making the noise (I always thought it was), it’s the bubbles of nitrogen (or some kind of gas, anyway) that build up in misaligned joints being burst. Whatever, I do enjoy a good crack! X

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      8. Re liquid drinks – I’m not understanding why yr gastro is against them. Given that you’re struggling to put weight on, are underweight and possibly malnourished, I would have thought it was the best option to get proper nutrition into you. Surely it’s important to find foodstuffs that your stomach can tolerate at this stage of ineffective treatments? I don’t understand his thinking. If you had an open wound on the sole of your foot, would you want to leave it exposed for fear that a protective dressing/bandage/thick sock would make it “dependent” on that protection?

        I respect yr decision to not want to take them, and I’m struggling to understand yr gastro’s point of view. What am I missing? Presumably, when things are healed, gastro function will return to normal and you can go back to eating normal food. What am I being dense about here? I’m obv missing something important in the picture! ❤

        L. X

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      9. I was on mashed foods for a long time. I think it’s partially about my stomach being incredibly sensitive and he doesn’t want me to get worse. And the other part being that my case was mild. He doesn’t want my stomach to get used to fluid. He wants me to try and eat what I can, to see where the problem lies. At what point does the food not digest? With liquid, he can’t track it.
        Everything I have been trialled on results in excruciating pain. I was good up until this point in time. I have a digestive medication that is meant to work, but hasn’t. It doesn’t matter what I try anymore – they have missed something. It might not be him – but someone has missed something along the way. I feel sorry for him. He is the best here. Everyone goes to him. He dropped everything for me. But, like he said, I am one of the hardest cases he’s ever had. I hope he can shed some light on it tomorrow… Why my body has gone backwards suddenly. Everyone has given up on me. I have seen about twenty doctors, three neuros, six or seven gastroenterologists before him… So many people!

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      10. Ok, that sounds logical enough from a diagnostic viewpoint. So when will he find out exactly at which point of your GI tract the problem starts? And can’t he do that with something more technical, like, I don’t know, a barium meal or something similar? Some trackable substance that doesn’t cause you any pain?

        Feeling sorry for him is a sign of your big heart and compassion. It’s his JOB to find out what’s wrong with you, however challenging and however hard and however much more difficult your case is to unravel, compared to his general, run-of-the-mill stuff.

        And the other thing is that if we chew our food as we’re meant to, it becomes a semi-liquid paste, sometimes more liquid than others, depending on the water content of the food, and whether you drink water/other liquid with it too. The Chinese have the best expression for this: ” Drink what you eat, and eat what you drink,” meaning that EVERYTHING, including drinks, needs to be pre-digested in the mouth before it can enter the stomach without causing undue difficulty there. There are so many digestive enzymes in your mouth, and they need chewing time before they can work as they are designed to. They need good contact with the food or liquid (water doesn’t need this). So things like soups, yoghurts, yoghurt drinks, milk, etc, need to be chewed just as much as solid food does. It’s all food.

        Hence, I still can’t get to grips with what yr gastro has said about not being able to track liquids, because if you’re physically chewing correctly (that old saying about 50 chews before swallowing came about for a reason), all solids end up in at least a semi-liquid form before they reach your stomach. He sounds like a lovely, good-hearted, well-intentioned guy, and it’s good you have someone who isn’t an arrogant arse, but so far he still hasn’t identified what the underlying issue is, he hasn’t dx’d you, and he doesn’t seem able to help you much. I hate that about your situation, I really do.

        I hope hope hope he has some answers for you on Thurs morn. How are you supposed to survive if this carries on unabated?

        Lots of love,

        L. X

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      11. Maybe ask him about hydrocortisone, or other steroids? They’d certainly resolve your inflammation, and increase your appetite. Not necessarily a long-term solution, but would def give you some respite from all this, and that would maybe give your body a chance to heal. Just a thought.

        What I said about Diorolyte was because I’m on steroids, and if I reduce them too fast, I feel very ill, very nauseous, I vomit endlessly, I faint, my muscles are weak as water, everything gets inflamed, I get appalling acid reflux, my appetite is shot, and I feel just awful. I found that taking Diorolyte made me feel markedly better. My frazzled brain couldn’t find a sensible answer for that. My GP was puzzled, too. He said, “Well, it MUST be doing SOMETHING, because you’re not the type to suffer from placebo effect….” Lol. My gastro just snorted and said it was blindingly obvious to him – I was getting a similar amount of glucose from the Diorolyte as I would do from a slightly higher dose of hydrocortisone. I’d dropped my hydro too low for my body. And he was right, we believe.

        Hydrocortisone is the weakest and most close-to-natural steroid out there. There are stronger ones, like prednisone, dexamethasone (which is also anti-emetic), and others. Typically, with hydro, you start with a low dose of 2.5mg a day and increase it by another 2.5mg a day every third or fourth day, until you reach a maximum of 20mg – that’s if your adrenals aren’t coping, which yours may well not be. They aren’t designed to produce anti stress/ stress hormones on a permanent basis. Of we have chronic illness, they end up exhausted. This is often missed by medics. Even adrenal testing is useless, as you have to be practically dead before the common short synacthen test shows positive for a steroid hormone production problem. I was lucky, I had been on hydro for four years from a private doc before finding a GP who was prepared to prescribe hydro for me WITHOUT insisting I see an endocrinologist first. (Sometimes arrogance is useful in a medic!) I would categorically be dead without having had that private doc put me on hydro back in 2000. I was at death’s door. I’d been bedridden for two years by that point, with no dx. After three days on 2.5mg of hydro, I had enough energy to get out of bed and…..clean the toilet! Don’t laugh. At the time, I was so relieved to have some energy that I bawled my eyes out.

        Anyway. Just a suggestion, but maybe you could talk to your gastro about hydrocortisone replacement, or a short course of prednisone. Pred is four times stronger than hydro, far less nature-identical, but is the medics choice for squashing inflammatory conditions. I’ve been on pred at various times, and I always struggle to come off it, so now we stick to the equivalent amount of hydro (1mg pred = 4mg hydro).

        The very best of luck, darling Cass.

        L. X

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      12. I googled Hydrocortisone because it aounds familiar and I realised I have had it in cream form after I got Shingles. What does it do for someone with gastro issues? I’ll have to ask today. I am dreading this appointment, and the “there’s not much I can do”
        Ugh

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      13. Hydrocortisone is a mild steroid, and it comes in various strengths as a cream, lotion, injections, and oral tablets.

        It is usually made by the adrenal glands, but they can easily stop producing it if they get exhausted through chronic illness. They aren’t designed to be stuck in emergency mode on a long term basis.

        It reduces inflammation, raises blood sugar levels, increases appetite, and gives you some energy.

        High doses ( defined as Physiological Dose at up to 20mg a day, or Supra-Physiological if more than about 40mg, but really anything around 100mg a day) will also suppress the immune system, so they give them to people with auto immune disorders too.

        I thought it could be useful to check your adrenal status, and give you a trial on 2.5mg a day for three days, followed by 5mg for three days, then 7.5mg for three days, and see how you respond. It’s what I think I’d do if I were your doctor. Except I’m not ANYONE’S Dr!

        Worth asking your gastro? Mine seemed very au fait with my hydrocortisone, and I wasn’t expecting a gastro doc to know anything about it. Maybe yours will have the same skills mine did in this regard. Xxx

        Liked by 1 person

  11. My understanding is that the gastroparesis can be pretty bad all by itself. My daughter has improved but still has issues. Both the paediatrician and gastro guy werren’t very encouraging about treatments qand I’ve just been hoping that she doesn’t get worse. One thing I have heard about is a electronic device which goes on the vegas nerve. It is is being used to treat rheumatoid arthritis as well as gastroparesis. If you put vagus nerve stimulation into Google it is used for a range of conditions. I’m doing more research xx Ro

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      1. At least she’s recovering in my head. She still talks of tummy aches and her mood swings can be quite extreme but she’s so much better than she was.
        I think that device is surgery and while I think think it’s available, it’s not common. I’ll be discussing it with my rheumatologist in a few weeks so I’ll let you know. I know a few people who are interested.
        I also have hydrocephalus which has been treated with a shunt. Apart from an initial malfunction, I’ve been fine for over 15 years whereas being on medication is much more complicated and fraught with trouble.

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