SevereAllergies

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    When is it ok to give up?

    TW: depression, trauma, terminal illness *super long vent, sorry*

    I feel like this #Cancer is taking everything away from me, what little I had left. Prior to diagnosis in April, I had to quit my job for health reasons and filed for disability (medically approved now but for the cancer but still no final word from them). I was struggling with #CPTSD , #MajorDepressiveDisorder , #ObsessiveCompulsiveDisorder , #Fibromyalgia , #PsoriaticArthritis , #Asthma , #sjogrens , #SevereAllergies , #Bursitis , #PolycysticOvarySyndrome , #DiabetesType2 and a bunch of other complications from all of these things plus a few more diagnosed illnesses. All whilst trying to get a divorce (still trying to get it).

    So in April I go to the ER thinking Covid. Nope. Lungs both full of fluid from #CongestiveHeartFailure . Apparently I had a heart attack and didn’t notice as I was told a lot of chronic pain patients don’t because we’re used to random severe pain. Also they found a grapefruit sized tumor on my liver, stage 4 #BileDuctCancer in my #liver and it had spread to some lymph nodes on my abdomen. I have no medical insurance.

    So now here we are in July and I’ve been in chemo since May. I’ve had a few minor surgeries/procedures and I have to have my port removed/replaced which is why I’ve been in pain there since May.

    Now it turns out on top of mouth problems, fatigue, low white blood cells as side effect to my #Chemotherapy , I have been diagnosed with #ChemotherapyinducedPeripheralNeuropathy which has been the most painful experience of my life. They said it was a severe case.

    They also think either a #cateract or #Glaucoma in my left eye which is why my eye hurts and I can barely see. Either could leave me blind. I’m an artist by trade, I’ve won awards for my cakes and every one of my hobbies is art/craft/visual. Now I can’t tolerate any amount of light without it being painful and I can’t do anything with my hands without being in major pain from the neuropathy. I can’t enjoy anything or do anything for myself, already fell down the stairs last week because of my vision/neuropathy combo.

    Also, I’ve had to get 2 Neupogen (helps bone marrow make white blood cells) shots this weekend and like every other week. The bone pain makes my body shake uncontrollably and nothing will help it.

    All this has led to me being a walking pharmaceutical cocktail and the side effects are brutal. I picked up a new med today, tonight my little medicine bag overflowed and I broke down. I just turned 40 in May. I have more meds than years on this earth. I have a terminal illness that makes me ineligible for the heart transplant that I need but im technically not dying according to my oncologist.

    So at what point is it ok to say I’ve done enough, I’m tired and I give up, I want out? Daily living is torture and there’s no joy.

    Thank you if you made it this far!

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    Just another day with Chronic Illness

    Hey ya’ll,
    Just wanted to introduce myself to the community - my name is Lexis, 25, living with multiple Chronic Illnesses. Just looking to relate to others. Have yet to meet people with the number of conditions I suffer with. That’s also kind’of hard when you spend most of your life in the hospital and home in bed due to some symptom from some illness. Not to forget, COVID, too. Being immunocompromised seriously makes life so much more difficult. Just going somewhere outside of your safe bubble (home) is a danger and puts you at risk. If I’m not home I’m usually at a doctor’s appointment. I’m sure many of you can relate. I get the simple cold or flu and 95% of the time that’s another admission in the books.

    Currently dependent on a feeding tube for nutrition. Current heart monitor connected for a month to monitor my heart conditions. And a double lumen central line placed from time to time for medications & antibiotics. Extra measures used to simply use the bathroom (bowel movements) due to my body being unable on its own (lack of motility).

    Anyway, this is not a pity post, I promise. Just looking for people that can relate to atleast some of my situations. I currently live alone..starting a new job soon and school. I’m very excited. Introduction pretty much over with.

    Hope everyone has a fabulous day no matter your challenges ♥️

    #ChronicIllness #Dysautonomia #PosturalOrthostaticTachycardiaSyndrome #ChronicRenalInsufficiency #Gastroparesis #PsuedoBartterSyndrome #GastroesophagealRefluxDisease #LazyBowelSyndrome #IntestionalMalabsorption #ProlongedQTcSyndrome #SupraventricularTachycardia #microcyticanemia #Pancytopenia #Immunocompromised #Osteopenia #Asthma #SevereAllergies #SeizureDisorder #IdiopathicHypoglycemia

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    My heart landed me in the PICU..

    Hi everyone,
    New to the group. However, very use to SVT and Chronic Illnesses in general. I was just discharged from the hospital last week, just in time for NYE. Christmas unfortunately was spent in the PICU, all due to frequent episodes of SVT with combined PVCs. Although this has gone on untreated for a while, I was recently finally diagnosed. In my case it had to get worse before I could get better. Currently on my second home heart monitor. After 4 weeks, once these results are read, my Cardiologist is coming up with a treatment plan that best fits my needs. So I guess my question for you all is.. what type of treatments are you doing right now? If any. We’ve spoken about adding a beta blocker to my medications and possible heart surgery. I just don’t know what to do.

    I’m just so tired of having these circuits of out of control, super tachy ectopic beats (for no reason).

    #SupraventricularTachycardia #ProlongedQTc #DiulatedLeftVentricle #prematureventricularcontractions #LazyBowelSyndrome #Gastroparesis #Dysautonomia #PosturalOrthostaticTachycardiaSyndrome #Gastroparesis #IntestionalMalabsorption #SeizureDisorder #MicrocyticAnemia #Pancytopenia #ChronicKidneyInsufficiency #Hypoglycemia #Osteopenia #Amenorrhea #Asthma #SevereAllergies #FeedingTube

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