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    Medical Marijuana ~ I Never thought I’d Be a 50 Year-Old Stoner. But Here I Am.

    Life with chronic illness is hard.

    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.
    #Dysautonomia #HypermobileTypeEDS #OccipitalNeuralgia #DegenerativeDiscDisease #Osteoarthritis #AutoimmuneDisease #ChronicPain #InvisibleIllness


    Troubles in seeking a diagnosis, a rant of sorts

    I'm in the process of trying to narrow down the cause of my worsening muscle weakness. Originally my neurologist thought my bulging disc was pressing on my spinal cord. The neurosurgeon assured me it wasn't and that my assumptions were not normal. He even offered to help me find a neurologist, who would try to get to the bottom of it if mine didn't. So far my neurologist is doing great other than the insistence that I find out if my diagnosis of fibro could be behind it. I don't mind doing that, but only after everything has been ruled out. Mainly because my rheumatologist diagnosed me with fibromyalgia without truly ruling anything else out first. I'm not thrilled with my rheumatologist, but I was able to get my EDS confirmed and diagnosed because of her.

    So initially my neurologist thought multiple sclerosis, myasthenia gravis, or cidp were the likely culprits. After my appointment to test reflexes cidp is ruled out, because my reflexes are good. So now I'm waiting on my neck and upper back mri, which is Monday to see if there is any signs of MS.

    Amidst all of this, I also need an egg and my neuro wants it from a particular place and provider. They do great emg studies. OK, great. I call them and they work in a pain management office that I've been to before. I hadn't been back because all they wanted to do was injections and I noped out. It caused way more pain than it helped. In the process they are trying to get me to come in for a pain management appointment and I said no, just schedule me for the email please. Onto insurance, yeah! I have 2 insurances. My primary doesn't require a referral for specialists whereas my secondary does when and only when, it is primary. It can never be primary when there is another insurance. It also has to follow the guidance/rules of the primary insurance. I no longer need a referral and I know it. They try telling me I need a referral. I reiterate many times that I do not. I've stayed calm, but emphatic. I end up speaking with the supervisor who decided to call my secondary to confirm. Guess what? I'm right! They should have taken my info and checked with the insurance before arguing about it. I don't count on the doctors office to tell me what my insurance will cover or allow. If I'm ever in doubt I call my insurance and ask. I'm sure my primary will need to approve the emg just like they need to approve an mri, but that's easily done.

    With all of that I get told that the emg counts as a procedure, so the procedure scheduler needs to call me to schedule it. A week later I've gotten no calls, so I called back. Evidently the request didn't go through. I know it's probably just an honest mistake, but it feels like they didn't send it because I stood my ground about my insurance. Good news is that I should get a call today or tomorrow. Here's hoping for an answer. #HEDS #MultipleSclerosis #MyastheniaGravis #muscleweakness #rant


    Does anyone else have a Pineal gland cyst?

    I have a large pineal cyst we found when I was 7. I've been having symptoms related to it. I will be going to see a nuerosurgeon this week for follow up from an ER visit I had a week ago to discuss possibility of removing the cyst. I went to the ER because of an episode I had where I started loosing my vision slowly over a 30 min span. Once my vision was regained it was followed my a severe headache to the back of my head and nausea. They ruled out stroke etc. I was told the cyst is large and was the cause of this along with other symptoms I'm having. I've just never met/talked to anyone else who has a pineal cyst. #pinealcyst #Headache #nausea #Fibromyalgia #PeripheralNeuropathy #ChronicPain #muscleweakness #ChronicFatigue #Insomnia


    I need very easy dinner ideas that don't require alot of energy or time. #POTS #MG #muscleweakness


    Did a migraine make me lose motor control of my arm/hand? #Migraine #NeurologicalDisorder #muscleweakness

    I’ve been getting migraines for about six months. I think bought on by the meds for my Crohn’s disease or from the stress of the Crohn’s disease.

    I recently woke up and couldn’t move my right arm or hand. No other symptoms. Though I’d had a migraine the day before and bad diarrhea.

    Initially I thought I’d slept on it awkwardly but it wasn’t numb - I could feel my skin when I touched it with my left arm. I just couldn’t move it.

    This continued for an hour and my husband decided we should go to urgent care. They immediately called an ambulance and sent me to the ER thinking I’d had or was having a stroke.

    They did the stroke protocol and came up with nothing. During this time my arm seemed to recover gradually.

    I could lightly grip. Then more and more until back to normal by lunchtime.

    Of course, I felt like an idiot for being there but they seemed concerned.

    I followed up with my neurologist and he said it was highly likely a migraine. I was pretty surprised by this.

    Has anyone else with migraines experienced an episode like this?

    Is it like a pre-stroke?

    And is leaving my migraines untreated risky?

    Any thoughts on this?


    We've got some everyday hacks for living with CMT

    Tips and tricks for rocking social events, family outings and clever beauty products to make life with CMT a little easier. New section now up on our site!
    #cmthacks #Charcotmarietooth #CharcotMarieToothDisease #cmtwegotthis #handatrophy #muscleweakness #Fatigue #FootDrop


    Finally bought a cane

    After months of trying to convince myself and chickening out over and over again, I finally purchased a cane today. Now I just have to get the nerve to actually use it. #sjogrens #muscleweakness #Disabled


    Fibromyalgia symptoms? #Fibro #musclespasms

    I was just diagnosed with Fibromyalgia a few days ago, after years of people telling me it's all in my head. The doctor finally got me on Lyrica 4 months ago, which helps significantly with my every day pain (except in my low back--I have degeneration in on my lumbar and SI joints from years of gymnastics). My question is, after a stretch of feeling good and doing too much, I will get a pop in my neck out of no where (usually when I wake up in the morning) and all my upper back/neck/shoulder muscles will spasm, and it's a sharp pain like a pinched nerve but 100x worse. Any movement, even trying to sit up to take pain meds, will leave me screaming. Only rest will cure it, and it can take days to weeks to recover. If I overdo do it, my muscles can get. very weak, sometimes to the point I collapse or can't hold a pencil, and it comes and goes as it pleases. Does anyone else deal with these? Are these normal for fibro? #Fibro #Fibromyalgia #symptoms #musclespasm #muscleweakness #BackPain #fibrosymptoms #ChronicPain