MultipleHealthChallenges

Does anyone have recipes for me. I have a new Ileostomy w colectomy recipes pls🥘🍔🍳🌮🍝im so hungry # ##Ostomy
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#InflammatoryBowelDiseaseIBD #CrohnsDisease #Recipes
#nutrition

#PrimaryImmunodeficiency #MultipleHealthChallenges
#MultipleSclerosis #DMS #degenerativespinedisease
#Arthritis #CrohnsDisease #Endometriosis #Adenomyosis #Epilepsy #Fibromyalgia #Migraines #Spasticity #

The problem with having severe mental illness and trauma, or really any disability for that matter...

If you don't act "disabled enough" in public, people assume you're fine and should be functioning just like everyone else... If you're able to hold a conversation, or go to a social event, or work a job, or go to the grocery store, or clean your house, even part of the time, people assume you're absolutely fine and faking/exaggerating your symptoms. Even if I can do the task once and fail the next ten times, people think because I did it once I'm 100% fine.

But if you act "too disabled" people think you're "crazy" and a burden and want nothing to do with you. If you're suicidal, out of control, crying, self-harming, having flashbacks, getting angry for "no reason", canceling plans, unable to work, can't keep up with responsibilities, can't go out in public, can't clean, or can't socialize, people get tired of you, ignore you, get mad at you, blame you for your symptoms, and don't want to be around you.

This also applies to physical and intellectual disabilities and chronic illness. For example, being able to walk. If a person in a wheelchair walks once in a while, they aren't "cured" or faking it or not trying hard enough, they're still disabled! Disabilities don't present in the same way every day. Some days I can go to an appointment and then clean for six hours and be absolutely fine, and some days, like today, simply opening an incorrect bill will trigger a severe and disabling meltdown for several hours. We have good days and bad days. We are trying harder than you can imagine. Please understand and be patient with us.

Nobody is faking their trauma or disability. Nobody is exaggerating their symptoms. Nobody is pretending as an excuse to avoid responsibility. We are doing the best we can. We need compassion and understanding from those around us. We're trying so hard. Every day is hard for us and we're doing our best. Please try to understand.

Please feel free to share your thoughts and/or experiences with us. We are here to support one another and lift each other up.

Thank you all!

#MultipleHealthChallenges #invisableillness #Depression #Anxiety #youarenotalone #mighty contributor #warriors #Fybromyalgia #Gastroparesis @moshe222mhc

Sometimes we all get into a slump, a downward spiral of a ride called life that tries to grab a hold of us and not let go. It happens to us all. I myself am no stranger to this. So, with the support of an incredible friend I have made just by originally joining this group has helped me break free and shake that hold it’s had on me. I am wishing everyone a great week and more to come this week. Virtual hugs to all ! #MultipleHealthChallenges #mightycontributor

So, my hydrotherapy that I wanted so long turned out to be a bit of a physical nightmare. I think I had 6 sessions so far. Five in the heated tank and one I pushed them for when the heat wasn’t working (cold) water. Yes, the cold was the best for my body as I thought it would be. Out of six sessions. Fifty percent of them I went in on a rollator/cane and came out the same way. Fifty percent of them left me unable to walk at all and required a wheelchair to leave. Two times while in the tank my body went into major immediate symptoms that required the tank to be drained and getting me out right now. Last week, my session ended abruptly requiring the therapist to call for help and a wheelchair to get me to the emergency room immediately. Six hours later I was on my way home.

The bad news: Each hydrotherapy session in heated water quite literally felt like it tortured my body. Not just for the session but for the rest of the day and two to three days afterwards. Then, it was time to go again and do it all over. I’ve been telling my neurologist for the entire time that my body is suffering immensely with heat/humidity!! I KNOW. I know because I live in a home without a/c or central air, and the summer’s that I’ve lived for my whole life are now intolerable in every way. Why is my voice not heard?

The good news: I don’t have a brain tumor (they did a ct scan), not that I thought I did. I didn’t have a stroke.

The e.r. Dept wants the doc to continue looking at ms and autoimmune illnesses. She also said that the spine stimulator in my body that I’m currently not using NEEDS to be removed. I’ve nobody to do that and who’s going to pay for it?

Now, the therapy department informed me that they will not allow me to continue hydrotherapy at all. They believe that something is attacking my nerves. Umm 🤔 yes, I believe that as well! I feel like my doc does not listen to me at all.

It’s all ground or machine therapy from here on out. This will be so challenging as well seeing how my body can only walk 15-20 minutes max before my feet fold under, the numbness, pain and burning take over 2/3 of my body and I become unable to walk no matter if I’m using a rollator or not. I keep having vision episodes, facial numbing, head tingling and on and in it goes, along with limbs full of numbness and weakness the pain is severe and it is daily.

Today, I’ve therapy in the afternoon, then it’s my sleep deprived eeg in the morning. Wow, what fun I’m going to have in the next 24 hours (my body), NOT! How I’m going to stay awake is the question of the day? Oh hell. 😬 Wish me luck you beautiful people!💕
#MightyTogether #Undiagnosed #CheckInWithMe #MultipleHealthChallenges