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    What's something you wish you could tell others about your experience with gastroparesis?

    Living with gastroparesis presents a unique set of challenges that can be hard to describe to those who don’t have experience with the disorder. From the outside, it may look like we’re picky eaters or we’re antisocial when we turn down dinner invitations, but, on the inside, we know we’re dealing with a difficult-to-manage condition that has the power to overwhelm us on a daily basis.

    I wish I could express to others just how painful gastroparesis can be and the medications and precautions I have to take to be able to digest food. I also want people to understand that I’m not being rude or “watching my figure” when I ask for a to-go container, I just can’t keep forcing food down, especially when the people I care about glare at me impatiently as I take small bites and thoroughly chew everything.

    So, fellow Mighties with gastroparesis, I want to know what you wish you could tell others about living with gastroparesis. You don’t have to sugarcoat anything here.

    #Gastroparesis #EhlersDanlosSyndrome #Diabetes #Neuropathy #TheBendyBunch #GP #EDS #underactivethyroid #Hypothyroidism #CheckInWithMe

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    Since when did GP’s become psychic?

    Absolutely fed up of Doctors and not being able to “see” a doctor ! Over two years since I physically saw a GP, try as I might ! Try telling them we have no house phone and no mobile signal in the valley, I have to drive 8 miles to get a signal.
    The wifi in the valley is copper and signal in and out.
    I managed to drag myself into the doctors. Explained yet again but told (no doctor will not see you until they have spoken to you) 😔.
    The world has gone mad.
    18 month to 3 years for referral to specialist appointment.
    How can doctors diagnose over the phone ? I have heard of all kinds of magic, voodoo, incarnations, even dream walking but telephone divination is not one of them! Deflated and pain is off the scale. Anyone got a suggestion, even email consultation needs a telephone number to get back to you ? Am I missing the point ? #GP #Doctors #healthcaresystem #ChronicPain #BeingIgnored #FeelingAlone #howmuchmoreshouldihavetotake ?

    Post
    See full photo

    Since when did GP’s become psychic?

    Absolutely fed up of Doctors and not being able to “see” a doctor ! Over two years since I physically saw a GP, try as I might ! Try telling them we have no house phone and no mobile signal in the valley, I have to drive 8 miles to get a signal.
    The wifi in the valley is copper and signal in and out.
    I managed to drag myself into the doctors. Explained yet again but told (no doctor will not see you until they have spoken to you) 😔.
    The world has gone mad.
    18 month to 3 years for referral to specialist appointment.
    How can doctors diagnose over the phone ? I have heard of all kinds of magic, voodoo, incarnations, even dream walking but telephone divination is not one of them! Deflated and pain is off the scale. Anyone got a suggestion, even email consultation needs a telephone number to get back to you ? Am I missing the point ? #GP #Doctors #healthcaresystem #ChronicPain #BeingIgnored #FeelingAlone #howmuchmoreshouldihavetotake ?

    Post

    Feeling guilty for being mad at doctors.

    So everyone is going on and on about how fantastic doctors are right now and usually I agree. I clap for them on Thursday. My partner is a biomedical scientist for the NHS so I appreciate everyone who works there. Especially now. But today I am so bloody angry at them all. I realise they aren’t all awful but two in two days just makes me mad at them all!
    First the dermatologist I was referred to doesn’t have my medical notes and before even seeing the suspicious mole, tells me it’s fine and I shouldn’t have seen a doctor. Says I “would know if it was cancerous”. And then says keep an eye on it but it getting bigger and suddenly having two colours isn’t a reason to see a doctor.

    Then I ring the GP surgery today to get another tramadol prescription and to discuss contraception. First I face the Spanish Inquisition about the tramadol which I expected. He finally gives in and prescribed it (I’ve literally been having it for 3 years and just don’t have it on repeat because I don’t take it often enough). Then I move on to contraception which I didn’t anticipate as a problem. Instead of having the contraception injection I should have had two weeks ago, they put me on the pill due to the virus. I totally understood why they wanted me to try the pill so I agreed and they PROMISED that I could have the injection if, after two weeks, the pill wasn’t helping my pain levels (the injection does) or there was any side effects I didn’t like, they would just let me have the injection as extenuating circumstances. So it’s been two weeks and my pain is worse, as well as the pill is really affecting my mental health. It makes me feel like I haven’t taken my anti depressants, has me crying all the time about everything (happy and sad) and makes me suicidal. I had to be signed off work due to depression for a while last year and had CBT for it 6 months ago. Been on these antidepressants for nearly a year and was on others for 3 years prior. Doctor says he disagrees with the other doctor and that I should be on the pill until roughly July when they open back up properly. Said it was only for people who really need it and I don’t. Said to try paracetamol for the pain and that sometimes hormonal contraception makes you feel sad for a while. Are you kidding me?

    So thanks to docs for all they do but my god are some of them awful at their jobs. Thank you for risking your life but could you not risk mine too?

    Gonna go cry in bed worth my guilt.
    #Doctor #dermatologist #GP #Depression #Ehlers -danlos #SuicidalThoughts #contraception #tramadol #Pain #Anxiety #Guilt #Cancer #Moles #NHS #cry

    Question

    Do you need to have fiber in your diet as a teen with Gastroparesis #Gastroparesis #HEDS #GP

    I am 15 years old and recently diagnosed with mild to moderate Gastroparesis. I see online that you should avoid fiber in your diet with GP. I googled it and was met with you needing fiber in your diet to live a healthy life. I am not sure if people take fiber supplements or just avoid it entirely. I am sorry if this question is stupid. I am just very new to this.

    Post

    Frustration in choppy waters

    After an abusive upbringing and a particularly abusive & manipulative relationship I’ve semi-recently been diagnosed with cPTSD.
    In the last few weeks my long term GP has moved out of my area and so I am now in the search for a new GP.
    This has been immensely frustrating with my cPTSD as I find it extremely hard to trust people and feel like I’m getting judged by everyone. However, I may have narrowed it down to 2 choices.
    My schema therapist has been keeping me stable and I’m finding schema therapy extremely fascinating and powerful after a number of years in CBT/DBT/ACT therapies, it is quite different to anything I’ve ever done and while I can’t explain how it works, it is clear that this therapy is the most powerful work I’ve ever undertaken.

    The final issue that is causing severe issues is chronic back pain due to scoliosis and TMJ pain which has only just been diagnosed but I’ve already been told that Panadol and Celebrex are all they can give me for the pain. This is highly frustrating and discouraging. I am finding relief from dōterra oils and their ice blue rub but need more relief than what I’m. currently getting.
    Going to request a referral to the pain clinic and try and get some other pain relief to help with the pain, I want to try to avoid narcotics at all costs but if I need to go on them I will but will be insisting the dosage is kept low. I want to train as a psychologist and need my brain clear. Not to mention being intoxicated will inhibit my gym training and weight loss efforts.

    I think the most frustrating thing about all this is being looked at sideways as thought I’m a drug seeker as soon as I mention pain. Considering I already don’t trust people this is the exact opposite of helpful.

    Sorry, long post, just needed to get that off my chest.

    #CPTSD #frustration #Schema #Therapy #chronic #Pain #TMJ #Scoliosis #training #Narcotics #clinic #dōterra #relief #CBT #DBT #ACT #Celebrex #Panadol #GP #New #choppy #waters

    Post

    Frustration in choppy waters

    After an abusive upbringing and a particularly abusive & manipulative relationship I’ve semi-recently been diagnosed with cPTSD.
    In the last few weeks my long term GP has moved out of my area and so I am now in the search for a new GP.
    This has been immensely frustrating with my cPTSD as I find it extremely hard to trust people and feel like I’m getting judged by everyone. However, I may have narrowed it down to 2 choices.
    My schema therapist has been keeping me stable and I’m finding schema therapy extremely fascinating and powerful after a number of years in CBT/DBT/ACT therapies, it is quite different to anything I’ve ever done and while I can’t explain how it works, it is clear that this therapy is the most powerful work I’ve ever undertaken.

    The final issue that is causing severe issues is chronic back pain due to scoliosis and TMJ pain which has only just been diagnosed but I’ve already been told that Panadol and Celebrex are all they can give me for the pain. This is highly frustrating and discouraging. I am finding relief from dōterra oils and their ice blue rub but need more relief than what I’m. currently getting.
    Going to request a referral to the pain clinic and try and get some other pain relief to help with the pain, I want to try to avoid narcotics at all costs but if I need to go on them I will but will be insisting the dosage is kept low. I want to train as a psychologist and need my brain clear. Not to mention being intoxicated will inhibit my gym training and weight loss efforts.

    I think the most frustrating thing about all this is being looked at sideways as thought I’m a drug seeker as soon as I mention pain. Considering I already don’t trust people this is the exact opposite of helpful.

    Sorry, long post, just needed to get that off my chest.

    #CPTSD #frustration #Schema #Therapy #chronic #Pain #TMJ #Scoliosis #training #Narcotics #clinic #dōterra #relief #CBT #DBT #ACT #Celebrex #Panadol #GP #New #choppy #waters

    Post

    Frustration in choppy waters

    After an abusive upbringing and a particularly abusive & manipulative relationship I’ve semi-recently been diagnosed with cPTSD.
    In the last few weeks my long term GP has moved out of my area and so I am now in the search for a new GP.
    This has been immensely frustrating with my cPTSD as I find it extremely hard to trust people and feel like I’m getting judged by everyone. However, I may have narrowed it down to 2 choices.
    My schema therapist has been keeping me stable and I’m finding schema therapy extremely fascinating and powerful after a number of years in CBT/DBT/ACT therapies, it is quite different to anything I’ve ever done and while I can’t explain how it works, it is clear that this therapy is the most powerful work I’ve ever undertaken.

    The final issue that is causing severe issues is chronic back pain due to scoliosis and TMJ pain which has only just been diagnosed but I’ve already been told that Panadol and Celebrex are all they can give me for the pain. This is highly frustrating and discouraging. I am finding relief from dōterra oils and their ice blue rub but need more relief than what I’m. currently getting.
    Going to request a referral to the pain clinic and try and get some other pain relief to help with the pain, I want to try to avoid narcotics at all costs but if I need to go on them I will but will be insisting the dosage is kept low. I want to train as a psychologist and need my brain clear. Not to mention being intoxicated will inhibit my gym training and weight loss efforts.

    I think the most frustrating thing about all this is being looked at sideways as thought I’m a drug seeker as soon as I mention pain. Considering I already don’t trust people this is the exact opposite of helpful.

    Sorry, long post, just needed to get that off my chest.

    #CPTSD #frustration #Schema #Therapy #chronic #Pain #TMJ #Scoliosis #training #Narcotics #clinic #dōterra #relief #CBT #DBT #ACT #Celebrex #Panadol #GP #New #choppy #waters

    Post

    Referred an assessment

    Well, I poured my darkest thoughts out in my GP appointment and she was amazing. She listened, she validated me and my feelings stating that although she is not a mental health specialist, she does agree that it sounds like more than Depression and anxiety and meets the description of BPD. I've been referred for an assessment within the next 3-6 weeks. I couldn't have asked for it to go any better. I wish everyone were to experience such understanding.
    #GP #supportive #Depression #BorderlinePersonalityDisorder

    Post

    GP Visit

    It takes so much strength just to make that appointment in the first place.
    You finally call.... then that question from the receptionist. “Is it an emergency?”
    ...well no
    That’s the first mistake. Mental Health is just as important as physical health and so I should have just said yes. But I said no.
    Then told that regular appointments aren’t available until about 4 weeks time.
    Or I could call back on a day I could attend an appointment and maybe there will be cancellations.
    Great... I should have just said it was an emergency.
    I call back in the afternoon. (After 3 attempts... of hanging up the phone, telling myself I’m not important and should just wait) but no. I called. I managed to get a late appointment for 5pm so I took it.
    Finally after months of telling myself to go, I’ve done it.
    I’ve been in this place before. I’ve been diagnosed, prescribed medications, referred to mental health services.
    But each time it’s that same struggle and never gets easier even though you think it will.
    Now it’s another waiting game.
    1. To start therapy
    2. Another mental health assessment

    So now to just sit and wait... #MentalHealth #DoctorVisit #GP #NHS