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    What type of specialist do you wish was on your medical team?

    Being chronically ill definitely comes with its own set of complications, and we wish there was access to every type of specialist out there for all of the medical needs we have as complex patients. But realistically, not every single geographic location or insurance plan makes that feasible.

    If you had it your way, what type of specialist do you wish you had? What would make that specialist helpful to you?

    P.S. Check out Jeannette Reed’s new Mighty article about this topic:

    #ChronicPain #ChronicIllness #MentalHealth #Disability #Caregiving #RareDisease #Migraine #Stroke #CardiovascularDisease #AutonomicDysfunction #PosturalOrthostaticTachycardiaSyndrome #Spoonie #Lupus #Endometriosis #Hospital #Cancer #Anxiety #PTSD #CheckInWithMe

    43 reactions 17 comments
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    What accessibility modifications have you made in your house to accommodate your chronic illness?

    Living with a chronic illness can mean making changes to the environment around you to help better fit your needs, and that's 100% OK.

    Have you made any modifications in your home to accommodate your chronic illness? How did those modifications help? Were there any pros or cons?

    P.S. Need a relevant Mighty read? Check out this insightful new Mighty article by Tierra Drollinger

    #ChronicPain #ChronicIllness #MentalHealth #Disability #Caregiving #RareDisease #Migraine #Stroke #CardiovascularDisease #AutonomicDysfunction #PosturalOrthostaticTachycardiaSyndrome #Spoonie #Lupus #Endometriosis #Hospital #Cancer #Anxiety #PTSD #CheckInWithMe

    15 reactions 14 comments
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    Here I sit in the Hospital

    Yes here I sit or rather lay in the hospital bed. Nervous I have a #liver biopsy getting done tomorrow. Happy drs finally listened. Sad because as of yet the don't know what's exactly wrong.
    I had a ct scan of my abdomen in January all it said was fatty liver. My swelling (didn't know it was my liver atm) I though was another hernia or my back. 10 mths later. I see one of my Dr's and tell them about all the symptoms I been having lift up my shirt to show the swelling & they freaked.
    I was admitted to the hospital by that evening and that was on the 1st. Have had numerous blood tests, gastric emptying test another ct with & without contrast. My liver is very inlarged and the found a total of 6 lesions on it one measuring 14mm.
    So here I lay at night in my #Hospital bed.
    #liver enlarged
    #chronic pain

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    The choice

    While at a dark point in my visit to the hospital I almost made the choice to hurt myself but I walked into a special person...was it by chance? I do not know till this day. But one thing is for sure, she talked me out of something I would’ve regretted.

    So I channeled that experience into a poem that to this day makes me grateful for her presence.

    To my hero. B a poem inspired by you.

    The choice

    Early one day I went on a trip and on my way I found a paperclip...

    At first it was something innocent, a fidget toy..

    But later on could my life destroy..

    I do not know how to rid myself of this dark beast that clutches my heart..

    Threatening to unearth pain, reminding me of things that tore my life apart..

    I sat there wanting to cry..My mind filled with confusion and I don’t know why...

    Should I choose to live or should I choose to die?

    Because I no longer know how to live...

    How to try..

    Being someone great..

    Someone powerful enough to change the course of fate?

    Then I walked into you and knew...

    That what I was thinking, was not what I should do..

    Thank you for your help, the opportunity to see my worth...

    The chance to have many more days on this wondrous earth..

    By Camron Botha

    #ChronicDepression #MajorDepressiveDisorder #SuicidalIdeation #IntrusiveThoughts #ObsessiveCompulsiveDisorder #BorderlinePersonalityDisorder #GeneralizedAnxietyDisorder #Choice #Love #Gratitude #help #Friendship #MentalHealth #Anxiety #Hospital #Truth #Selfharm #dont #loveyourself

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    What’s been your experience with acupuncture?

    Mighty staffer Kat tried acupuncture for a couple of months to help with her chronic migraine pain and found her symptoms either stayed the same or even worsened after a couple sessions.
    This hasn’t been everyone’s experience however, and she’s definitely heard many success stories, too!

    What’s been your experience? Has acupuncture helped you? Have you found your symptoms to change or stay the same?

    #ChronicPain #ChronicIllness #MentalHealth #Disability #Caregiving #RareDisease #Migraine #Stroke #CardiovascularDisease #AutonomicDysfunction #PosturalOrthostaticTachycardiaSyndrome #Spoonie #Lupus #Endometriosis #Hospital #Cancer #Anxiety #PTSD #CheckInWithMe

    1 reaction 14 comments
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    I’m home #Depression #Anxiety #PTSD #Relationships #FamilyAndFriends #Hospital #Hope #MentalHealth

    I’m home. 8 days and 4 surgeries later after hobbling into emergency. I really thought it would be nothing serious it certainly came as a shock to be told I could lose a leg and then having a code blue scare, it’s been quite a journey.

    I have been home 10 minutes and already enjoying how quiet it is, the fact that I don’t have hourly checks and countless injections.

    I am very grateful for the amazing care I received but home is like no other place!!!

    2 reactions 31 comments
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    How do you approach hard health conversations?

    When you live with a chronic or rare condition, doctor visits and health conversations become a part of your regular routine — but preparing for those harder discussions can definitely still be super challenging.

    How do you approach those tougher health conversations? What approaches have you found to be the most helpful? What tips would you give someone that shares your same diagnosis?

    ✏️ P.S. Need some inspiration and a great read? Check out Kathleen M’s recent Mighty story:

    #ChronicPain #ChronicIllness #MentalHealth

    #Disability #Caregiving #RareDisease #Migraine #Stroke #CardiovascularDisease #AutonomicDysfunction

    #POTS #Spoonie #Lupus #Endometriosis #Hospital

    #Cancer #Anxiety #PTSD


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    Back in hospital again #Depression #Hospital #Anxiety #PTSD #Hope #Stress #MentalHealth

    For about five days I have had significant issues with my left leg. Last night the pain became unmanageable and walking was extremely difficult. So at 11:30pm my Wife drove me to the emergency department of the hospital where I had my recent heart surgery.

    I was so pleased to get a good dose of morphine. It was a pretty rugged night, hospital emergency wards seen to have permanently consistent loud environments.

    My biggest concern is no setbacks to our big European holiday in 5 weeks. I need to stay focused on the bigger picture


    Gotta catch ‘em all

    The last few weeks have been particularly hard on me.

    Mentally, I’m mostly okay. Physically, I’m not. And that’s caused me to question a lot of things, wonder how it got to this point, increasing the severity of incidents where I won’t take painkillers.

    I’m being referred to cardiology for a tilt table test.

    In April, I was told I had low blood pressure but they didn’t seem too worried. At the end of May after worsening lightheadedness, I was told the same, and I was basically just told just to eat more and take iron supplements. And then last week, I went back again.

    I initially made the appointment for something else a month before (I had to wait for a month), but then the lightheadedness got worse, so I told them about it again. I told them I had taken iron supplements, I was eating healthier than ever, I was staying hydrated, I was staying active, I was just really doing all the right things. And again it was low.

    They’ve diagnosed me with postural hypotension in the meantime and told me to try compression socks for a week, and then if that didn’t work to call them and they’d refer me. So here we are. I get to have a blood test in September while I wait to be seen.

    My sinus issues had a major flare up. I was so miserable with it that I sent a email basically begging them to give me an appointment (I was referred back in February but waiting list is apparently a year) because it was beginning to affect my mental health, and I get to see them in October.

    It’s affected my hearing, so I had to chase up my ENT appointment. I hope it is just the sinus issues causing it, and not a third relapse of my ear problem, especially as everything seemed perfect last time I saw them. It would be nice to celebrate the first winter in 11 years without an ear infection.

    And then of course, my referral for heartburn/ acid reflux. I see the doctors for a one-month review, which will end in the referral they wanted to do (because I had suffered for at least 5 years w/out diagnostics) but held off on. The medication they put me on has somewhat helped, but I’m still having to take gaviscon most days.

    Finally, the chronic pain. It’s been difficult these past two days, and after (stupidly) lifting a sofa up because the cat pushed her toy under it (and then she herself went under it so I had to call my sister because I physically couldn’t lift it for much longer), it’s been worse. I still forget that I’m not really supposed to do things like that, and I always pay the price (pun not intended, but yeah cause volatarol is expensive).

    I’m just really very tired. I remind myself it could be worse, which is probably what has helped me stay positive and mentally mostly okay, but sometimes it gets to me. Particularly when it’s yet another tablet added to my daily medication. It makes me tired, and I think “it only gets worse as I get older”. I want to stop them, but I know I can’t. I ended up in hospital the last two times I did.

    Or another time it bothers me is when everything is getting worse/ is bad/ is happening all at the same time. This post doesn’t even cover all of it, but at this point I’m too tired to write anymore. Speaking of tired, I’ve only had 5 hours sleep each day for the last 3 days. I wake up early and then typically can’t get back to sleep because of pain and insomnia :))

    #ChronicPain #Depression #GastroesophagealRefluxDisease #Heartburn #AcidReflux #BloodPressure #Lowbloodpressure #PosturalHypotension #Hospital #DoctorsAppointments #Doctors #Sinus #HearingLoss #ent #cardiology #Hearing #Medication #MentalHealth #Pain #BackPain #Insomnia #Painsomnia

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    Another day, another trip to the hospital, another procedure…the fun never ends. Being a “professional patient” helps but it’s still painful & scary!

    I had a Lumbar Puncture Monday and it got messed up and I’ve been having debilitating pain since ☹️I get migraines already but this procedure led to some of the worst headache pain I’ve ever had and it has continued all day for 5 days…nonstop. I have light, sound and motion sensitivity so I just sit in the dark with no sound or movement around me (sadly this is something I’m very used to with my having migraines regularly as a residual side effect from Covid Long Haul) but that wasn’t even the worst of it … after the migraine kicked in I started having intense pain in my upper back, shoulders, neck and upper arms. Out of nowhere, something I’d never felt before? Took me for a loop and I barely slept that night!

    Then Tuesday that pain became so excruciating that with the slightest movement I was screaming out of nowhere…to no one! Getting up and walking across the room was torture. My pain level was 10 out of 10. It was scary.

    Fast forward from then and I continued to be in awful pain the next two days. So finally the Docs mentioned I could get relief with a procedure called a Blood Patch…so yesterday I got a ride down to Hopkins in downtown Baltimore that really hurt, every bump or turn, but I got the procedure done. It was a much bigger deal than I anticipated with 6 people in the room…numbing, monitoring, poking, teaching, inserting… It felt more like surgery than a procedure! And it ended up not being a blood patch, but instead of my blood “to be safe” they inserted saline (20 cc actually - like 4 average blood draw tubes size!!!) right in the same place the needle went in for the lumbar puncture but a smaller needle and injecting in, instead of drawing out.

    So yes, just another health challenge, another procedure. For now I lay flat in bed recovering, just like the last five days, because the only thing that relieved some of the pain all week is laying down! Yesterday I was prescribed OxyCodone …but there was an insurance issue and I gave up after being on hold for over 30 minutes twice… I couldn’t drive to the pharmacy to get it anyway because I was so weak and post procedure limitations.

    Today I was more patient with the pharmacy and got the med through (7 days not 14) I drove to the pharmacy and it was close to 100 degrees but I was inspired and I was cautiously optimistic the Oxy would help …but it’s been 4 hours with only a little change …definitely not helping the pounding head☹️. I can’t get any more help til the pain clinic opens again Monday

    Oh well. This too shall pass …hopefully the pain will subside soon. I’ve been through worse. I know I’m not going to the ER with a migraine, but I can’t handle much more of this!

    #COVID19 #Migraine #Headache #Hospital #Fear #ChronicIllness #ChronicPain #Selflove #Selfcare #Pain #Fear #