Cushing's Syndrome

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Cushing's Syndrome
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    Home from hospital now, so happy to see my children. The worst part of all this is how suddenly i become unwell and end up in hospital and have to leave them with someone else. Looks like my heart is the issue, i went into SVT and they had to give me IVs to stablise my heart rate. Looks like it could be cushing syndrome too, and steroid induced diabetes with my blood sugars going above 20. They’re looking more into what’s going on with my heart and I’m now going to be under the cardiologist, as well as the thoracic clinic too with my usual respiratory consultant. Will have occupational therapy, respiratory nurse to visit at home as well as speech and language to help with my voice and swallowing problems. We are going to try and reduce the steroids a bit as currently on 50mg and have been for ages. The weight should start to fall off with the reduction too. My new wheelchair comes tomorrow one i can wheel myself rather than being pushed so will give me some freedom. Been a really awful few months, they want me to do counselling because of how much my life has changed and how limited i now am and they said they can arrange it for me though I already have a private therapist so not sure what I’m going to do yet.

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    The fear in waiting.

    I just had an #Endocrinologist appointment that ended with bloodwork. Now I'm in that dreaded stage of waiting. I may have had every single symptom that checked the boxes for an endocrine problem, specifically #CushingsSyndrome , but you know... that's happened before. As someone who has spent their entire teen and current adult life suffering through doctors and their tests, most of them coming back negative, I'm used to this. But this time...I really need to have an answer. An answer with a solution, no more incurable diseases. If its Cushing's, which I hope it is, I'll just get the snip of a benign tumor and return to my typical homeostatic state of #EhlersDanlosSyndrome . I really just need some support during this time, and good vibes I have solid answers instead of "rule outs." #ChronicIllness #ChronicPain #Asthma #HypermobileTypeEDS #IrritableBowelSyndromeIBS #AcidReflux #GastroesophagealRefluxDisease #BellsPalsy #Tachycardia #CheckInWithMe #Undiagnosed

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    emotional support best friend

    <p>emotional support best friend</p>
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    weight gain as a source of anxiety #Undiagnosed

    i genuinely can’t figure out if my excessive weight gain is a symptom of whatever is going on with me or just because i sometimes eat too much bread and sugar, but i haven’t gained much weight in my legs as my stomach area and hips so that’s kinda weird. but it causes so much anxiety because I barely want to eat anymore because I know i might keep gaining weight even if I eat normally (that’s if it’s a illness thing). I don’t want my blood sugar to crash or anything. Hopefully in the next few weeks I can clear it up bc i think I’m seeing an endocrinologist soon, but it’s so scary to think about bc things that cause weight gain like cortisol diseases can be dangerous.
    #Depression #PosturalOrthostaticTachycardiaSyndrome #Lupus #AddisonsDisease #CushingsSyndrome #AdrenalInsufficiency #HypothyroidismUnderactiveThyroidDisease #MentalHealth #EatingIssues #LymeDisease #UndiagnosedIllness #Undiagnosed #autoimmune #BodyImage #Anxiety #Inflammation

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    Which songs help or inspire you on your rare disease journey? #RareDisease

    <p>Which songs help or inspire you on your <a href="https://themighty.com/topic/rare-disease/?label=rare disease" class="tm-embed-link  tm-autolink health-map" data-id="5b23ceb000553f33fe99b3c3" data-name="rare disease" title="rare disease" target="_blank">rare disease</a> journey? <a class="tm-topic-link mighty-topic" title="Rare Disease" href="/topic/rare-disease/" data-id="5b23ceb000553f33fe99b3c3" data-name="Rare Disease" aria-label="hashtag Rare Disease">#RareDisease</a> </p>
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    Recovery from Cushing's syndrome

    I had Cushing's syndrome and had my R adrenal gland removed about 5 years ago. I was told by my doctor that I no longer had the disease.  It was hell to go through. I was so heavy I didn't recognize myself in a mirror.  Im still 30 lbs overweight but have started exercising and eating right.  

         It does get better after surgery. I was lucky that I live close to Johns Hopkins and they took me right away after I figured out that I had Cushing's. My doctor once told me that I had an adrenal gland tumor and not to worry about it. I was told I was making up symptoms.

         One doctor believed I was self harming because all of the bruises and rash. Especially my forearms. I called him after I got the diagnosis and he got really nervous. At this point I was fuming that no one believed my symptoms. I pushed to get the right treatment. I called Johns Hopkins after I remembered the doc telling me not to worry about the adrenal gland tumor. I went on line under adrenal gland tumor and found Cushing's syndrome. I had all the symptoms.

    Needless to say I was in terrible pain and couldn't sit or walk very far. I was using a walker to get around. I had difficulty driving, broke a few bones including a vertebra. I had to have back surgery because of this. I never lost hope. I don't know how I got through. But I did

    There is life after Cushing's syndrome

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