Nervedamage

Finding safe foods and drinks is a difficult and exhausting process, especially when dealing with everything else gastroparesis entails.

After I was diagnosed (which was a whole process in and of itself, as I’m sure we all know too well), my gastroenterologist’s office just told me to “look up the gastroparesis diet online.” Yeah, not helpful. While there is some information online about the diet, it’s hard to follow, physically and mentally, and requires a lot of patience as you test your limits.

While I’m still searching for the ideal plan for my gastroparesis journey (I will admit that I do love taste-testing different flavors of Ensure), I want to hear from you, my fellow Mighties living with gastroparesis! Friends, what are your favorite or go-to gastroparesis-friendly snacks, meals, and drinks?

#Gastroparesis #Diabetes #EhlersDanlosSyndrome #EDS #CheckInWithMe #Neuropathy #Nervedamage #underactivethyroid #Hypothyroidism #Scleroderma #Lupus #Parkinsons #MultipleSclerosis #MS

Hoping, praying this new month is bringing us strength, blessings, love and overall lots of patience and understanding. We all know how hard it can be to find people that will support and stand by us! Our illnesses do not define us! Hugs! 💕🥰🙏 #ChronicPain #MentalHealth #type2diabetic #ChronicIllness #ChronicMigraines #Fibromyalgia #Nervedamage

I was told that I should come and say hello. My name is Tavia, short version of Octavia. I am married. I live in bed ( if you can call that living..) due to the pain of several chronic pain conditions /injuries from a serious car accident I was in 23 years ago. I am now in my 50s. I deal with a lot of loneliness and isolation and some depression about losing my life and most of the people I cared about to an existence in pain.

#EhlersDanlosSyndrome #Fibromyalgia #AnkylosingSpondylitis #SpinalStenosis #ChronicMigraines #sciatica #Bursitis #Nervedamage #cervicalfusion #cervicaldiscectomy #spinalbonespurs #Hypothyroidism #PeripheralNeuropathy #numbness #Insomnia

Life with chronic illness is hard.
(Understatement)

Living every day in pain and with illnesses/conditions, is a lot to manage.
There is medication (so.many.pills), physical therapy, occupational therapy, doctors, health insurance issues, massage therapy, trigger point injections, muscle Botox, dry needling (#FibromyalgiaDiagnosis ), home exercise programs, “pre-gaming” showers with electrolytes so that I don’t faint from the heat and standing for too long (#LivingWithPOTS ), making sure I get enough sleep, and the acrobatics of just trying to get dressed by myself (#JointHypermobilitySyndrome ) without falling over (#Neuropathy ).

Most clothing hurts my skin (#SmallFiberNeuropathy ). You’ll usually find me in *soft clothes* (pajamas, leggings, no zippers, buttons, or stitching).

The rest of my day usually consists of ice/heating muscle spasms, trying to calm/stop fasciculations (#Nervedamage ), deciding which assistive device to use when going out, and worrying whether or not I’ll be able to sleep at night.

I cannot sleep in a bed, I sleep ON the bed - with a light blanket. Under the weight of the duvet, I’m too weak to turn over and change positions (#muscleweakness from so much muscle wasting).
And all of this is just managing my baseline.

It’s hard, after being in the cycle of being sick for so long, to remember what HUMAN feels like. Or what it’s supposed to…
Should I stay in bed or get up? Will showering help with the muscle pain, but make me faint because of the #POTS ?
Where is today’s pain coming from? Joints (#Osteoarthritis ), Muscles? Nerves? Bones?
I can always play my favorite game - “Heat It Or Ice It??”

I am not part of the opioid crisis in America. I am allergic to every pain medication available by Rx.
In the spring of 2019, I got my #MedicalMarijuana card (against my judgement/will/everything…because, well, #Stigma ).

I did not partake in college (I was actually allergic to the smoke, so when everyone else was getting high, I always had to go wait outside 💨 🤣).

Now I wondered what people would think. I didn’t want my teenagers to have a mother who was a stoner.
I didn’t want my friends to think I was high all of the time.

It didn’t help that my parents passed judgement…..

Then I tried it and decided WTF, because it WORKED!
Holy shit. Like, for reals, my pain was GONE. The nerves, muscles, all of it. And I slept. Like a little baby.
It literally changed and saved my life.

If I’m not sleeping during a flare up , or desperately trying to distract myself with something (anything), I’m stoned.
And probably keeping up with my dog’s instagram page. (Yes, simultaneously).

Any other pain-free stoners out there?
I’d love to hear what works for you.
🍫🌱💊
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#Dysautonomia #HypermobileTypeEDS #OccipitalNeuralgia #DegenerativeDiscDisease #Osteoarthritis #AutoimmuneDisease #ChronicPain #InvisibleIllness

I am struggling with insecurities. My daughter is graduating from high school (homeschool) at the end of this month. As a way of celebrating we are taking a family vacation to Galveston, Texas to enjoy the beach and the ocean. It was my idea, so even though I’ve been dealing with recovery from surgery (nerve damage pain included), as well as my fibromyalgia and my many other chronic health issues that have been causing problems, I’ve been feeling excited about the trip...until now. My husband just informed me that he invited his best friend, the friend’s wife and young daughter to join us in Galveston. Now don’t get me wrong, I like all of them, but the friend’s wife has always caused me to feel extremely insecure about myself every time I am around her. She doesn’t do anything specifically towards me that causes this, it’s just that she is a very high maintenance kind of woman that always has her hair and makeup done perfectly and is dressed in the cutest, most stylish outfits and shoes and I am the exact opposite of that. I rarely wear makeup anymore because of allergies and skin issues, our income is much less than theirs, so I tend to bargain shop for clothes and shoes for myself, my husband and our four kids, and due to all my health problems I cut off my long hair into a very short pixie and only bother to style it when I have somewhere to go. I simply feel like I am not good enough when I’m standing next to her. About two years ago she went through a battle with cervical cancer. It was caught early so it was able to be cured. Not long after that she was diagnosed with fibromyalgia and I thought that was a commonality that would help us connect more as friends, but it didn’t. Even though she is nice, we just don’t have anything in common. Again, the kind of woman she is, and the way she presents herself, always leaves me feeling like I’m not enough when I spend time with her. Now I might end up having to spend a whole week sharing our vacation time with her and my anxiety is through the roof just thinking about how I’m going to be stuck feeling the whole week. I know that I shouldn’t feel like this. I am a relatively confident woman around everyone else. It is ridiculous of me, but I just can’t seem to change my mental or emotional reaction any time I’m around her. Any advice on how to handle these feelings? # #Fibromyalgia #Migraine #ChronicFatigue #IrritableBowelSyndromeIBS #InterstitialCystitis #Allergies #Nervedamage #Surgery