Cardiomyopathy

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    Still best friends after all this time

    These cats are inseperable and do everything together. The black one has that feline cardiomyopathy and probably won't live for long. It will be sad for little Pickles, the orange cat. He will miss his friend.

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    I'm new here!

    Hi, my name is TeresaEDSLouisiana. I’m new to The Mighty and look forward to sharing my story.

    #MightyTogether

    #Anxiety

    #Depression

    #PTSD

    #Dysautonomia

    #EhlersDanlosSyndrome

    #CongenitalHeartDefect /Disease

    #Cardiomyopathy

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    I need all the sleep tips please!

    So insomnia + painsomnia - sleeping meds - pain meds + an uncomfortable sleeping environment = nightly anxiety attacks induced by pain. I can’t take it anymore, it’s bringing back the #SuicidalIdeation and I’m seriously afraid that I won’t be able to fight it.

    I’ve been off all mental health and pain meds since early August. They took me off of everything cold turkey in hospital because of my heart condition, #Cardiomyopathy and a low ejection fraction. Now I’m only allowed acetaminophen for pain but sparingly and Xanex for panic attacks but only if I absolutely have to however I can’t take it when I really need it because I have to take a heart medicine at bedtime and the two can’t mix. I have several #ChronicPain conditions as well as #MajorDepression , #ObsessiveCompulsiveDisorder and #CPTSD as well as #Cancer and my heart condition. It makes it really impossible to be able to look past the intense pain (6-8 during the day and usually a 9-10 at night now). It doesn’t help that my heart medicine flares up my #Asthma and #Anxiety so on top of being in pain I’m wheezing and coughing and freaking out over the wheezing and coughing.

    I’m having surgery next week for a port removal and replacement. I know last time the pain was insane and that was on meds and before the horrible neuropathy that chemo gave me. I know if I can’t figure out a way to get more comfortable in bed at night so I can rest then there’s no way I’ll make it through all that.

    So what do you do to make yourself as comfortable as possible in bed? What brands of pillows do you recommend? Is there a tea you drink?

    I have a cooling memory foam topper on my pillow top mattress. I use Sertra cooling pillows and cooling/moisture wicking sheets (my stupid #Diabetes makes my sugars drop in my sleep and I get soaking wet cold sweats nightly). I also have a wedge pillow I use sometimes for extra support. I’m a side sleeper because of my asthma but the #Fibromyalgia and #Bursitis make that really hard so I have to switch sides constantly because of the pain. Also chronic #sinusitis acting up for the win. Constantly have a #Migraine too.

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    Feeling trapped by pain, no relief options.

    TW: #ChronicPain #Anxiety #SuicidalIdeation #Vent

    I’ve lived with chronic pain all my life. Diagnosed with #ChronicMigraines at 6, #TemporomandibularJointDisorders at 14, #PsoriaticArthritis in all joints at 28, #Fibromyalgia at 29, #PolycysticOvarySyndrome at 30, #Cancer at 39, #ChemotherapyinducedPeripheralNeuropathy at 40. And countless other diagnosis along the way like #Asthma , #Diabetes , #sjogrens , #PosturalOrthostaticTachycardiaSyndrome , #Cardiomyopathy , #CongestiveHeartFailure , #Anemia . All while dealing with #CPTSD , #MajorDepression , #ObsessiveCompulsiveDisorder , #DomesticAbuse , #ChildhoodSexualAbuse , #MedicalTrauma .

    I’ve been in and out of hospital for both the cancer and my heart lately. The bile duct liver cancer is responding to chemo however due to a port that needs replacement and having been in hospital, I’ve not had chemo in a month. So it’ll be starting back up soon. I’m mixed about it, on the one hand what was meant to be palliative had turned out to be curative so that’s amazing. On the other hand the sickness and pain of chemo this time will suck because no meds!

    No meds? Yes, no pain meds or pain management anything aside from “a” Tylenol if I really need it, not the prescription kind. Earlier this month while in hospital for my heart they decided 90% of the meds I was on were “heart toxic”, including my mental health meds and pain meds. So they had me cold turkey all of those and I can’t go back on them because they’re trying to give my heart a chance to improve and heal with the help of heart meds and off the meds that were bad for my heart. As well as lifestyle changes. My ejection fraction is 20-25% since April. They think it stemmed from a virus or infection and usually that heals within 6 months but the meds + weakness from chemo (my chemo meds don’t affect the heart itself) were not allowing it to heal. So now no pain meds, no pain preventing meds. No mental health meds aside from a Xanex to use in emergencies but can’t be mixed with or taken near my heart meds. Which means I can’t ever use it because I take heart meds 3x day.

    Now I’m having pain flares of everything at once because no chemo for a while means my immune system is awake again and overreacting to literally all the things. I know pain, I’ve lived all my life with it and I have a high threshold for it. But I’ve never had to live with it in all its fury and all at once without help for any of it. The full pain with my untreated anxiety has led to almost nightly severe panic attacks at night because the severity of the pain keeps me from being able to sleep. I’m also freaking out at the thought of having to do chemo with no side effect help.

    The intense pain/anxiety combo is throwing me deep in depression again and bringing back all the thoughts of ending things. It’s just so much to deal with at once, losing hope so quickly.

    Thank you for letting me vent & for any support!

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    Blood Pressure Monitor recommendations?

    I think I need a new BP monitor, mine seems to be random lately. I could take it 3 times in a row some days I’ll get the same or close results and other days they vary drastically to where it makes no sense. My blood pressure monitor is an Omron BP760.

    I have to have something accurate as I depend on my BP numbers to determine my meds. I have a low-ish BP but both of my heart meds that I need to hopefully heal the cardiomyopathy also lower BP so if I’m under 90 systolic then I can’t take them. Otherwise I drop dangerously low and have passed out.

    What blood pressure monitor do you find works accurately for you?

    #BloodPressure #CardiovascularDisease #Cardiomyopathy #CongestiveHeartFailure #medicaldevice #healthmonitoring #HeartDisease

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    Old but New #multipleheathissues

    I joined awhile back. Left, now I'm back. I have many major health issues and am looking to find people who deal with a lot.

    #anticardiolipin #Cardiomyopathy #Sarcoidosis #Nervedamage #DiabetesType2 #myocardial bridging #DegenerativeDiscDisease #chronicpain #Depression #Anxiety #CongestiveHeartFailure #ChronicObstructivePulmonaryDisease

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    The harder your day is the lonelier you become #MentalHealth #PostSepsisSyndrome #Cardiomyopathy #EhlersDanlosSyndrome

    It doesnt matter how many good days you have, it only takes one bad one to ruin everything. My husband struggles to be my carer on bad days and just said he has no choice but to be my carer. How do you cope with these emotions? I am so much better physically and mentally than I used to be. I try so hard and push myself. I attend my appointments for everything. I never going to be the old me and ive accepted that. I dont think he has.
    #MentalHealth #EhlersDanlosSyndrome #PostSepsisSyndrome #Cardiomyopathy

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    Planning pregnancy with medical conditions and medications.

    My husband and I are hoping to try for a baby when he gets home in the next couple of months. I suffer from Ultra Rapid Cycling Bipolar, BPD, Dilated Cardiomyopathy and Epilepsy. Can anyone give me any advice on how to achieve and sustain a health pregnancy or any advice atall?
    #BipolarDisorder #Epilepsy #Cardiomyopathy #Pregnancy

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    Takotsubo Cardiomyopathy Recently diagnosed with Takotsubo and trying to recover from it. Anyone else here have this type of cardiomyopathy?

    #Cardiomyopathy