idiopathic

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    Music is my therapy

    I listen to music almost all the time. And just to warn you, I’m going to be singing along. (I have a good voice though) My kids complain about it (13,17 both boys and both on the Spectrum but at completely different levels. I suspect that I’m autistic #Autism so I understand why certain things bother them. It doesn’t matter if it’s their favorite song playing, they insist that I turn it down (one seems to have super hearing because he’ll be on the computer (which is between all of the bedrooms and all of the doors are to remain shut) WITH headphones on, and I’ll be on my bed listening to my #Music and possibly singing, and then I’ll hear one of my sons yelling “Turn it down!” And I have to turn it down to where I can barely hear it or put my headphones on. And when I yell to one of my kids from the same place I had been playing music, they yell back “If you’re trying to talk to me then come out here!” Or they knock on the door and I yell “Come in!” And they reply, “What? I can’t understand what you’re saying! Can I open the door?” But my music is WAY TOO LOUD. And then I’m going, but you like Slipknot! And they always say that they don’t want to hear it right now.

    So I go out to the porch with a speaker and I can blast my music outside. Music was one of the only things that would calm down our feral #Cat (we’ve had him since he was 5 weeks old and his mother was rejecting him) but he was just amazed at the sounds coming out of my cell phone and stop using his teeth and claws when we had him in the bed. (Side note- no matter how young the feral cat is, and how used to humans they are, they are still wild animals and you have to take time to tame them) His favorite band was #tool . He would actually curl up on the phone and listen.
    I have several chronic illnesses and emotional issues—#Ehlers -Danlos Syndrome type 3, #Fibromyalgia , #idiopathic peripheral neuropathy,#Dysautonomia and I’m being evaluated for #Lupus and #rheumatoid arthritis (EDS likes to bring friends), and I have a small cyst on my pancreas that could turn cancerous (my grandfather, great grandmother and my great uncle [my grandfather’s brother and g-grandmother’s son] all died of #pancreatic cancer. I have a bunch of #nodules on my liver and my #thyroid , #Migraines AND #cluster headaches, #hashimotos , and I suspect #Celiac disease since my mother and nephew have it and it would explain a whole lot (right now I’m cutting out dairy, then wheat, then soy-which is difficult because I’m a #Vegetarian ) plus my mental illnesses, #PTSD , #Bipolar disorder,#Anxiety and depression—and those last two are actually a CRITERIA for #EDS .
    I have to have my music and be able to listen to it—before I had ear pods, I would just play it on my phone with it stuck upside down in my bra. The music that is played in stores that I have to go to will actually give me a #Migraine so I don’t have any problems with bothering other people by playing my favorite playlist. They need to be exposed to good music anyway.
    I loved that I had a Bluetooth radio in my car, and I would have it turned up loud, and when I was smoking (I just quit!) I would have the a/c blasting (I live in #austin #texas , so it’s running year round) and I would have my window down for my cigarette. And this way I could expose people to good music (if I had a chance to say just 5 words to the country, it would be “ STOP LISTENING TO SH*TTY MUSIC”(seriously, what’s with all the smut in popular music today?)) and possibly find another person that enjoyed the bands that I play.
    My number one song for my bad days is #invincible by #tool and this song has been my anthem. Also, A Perfect Circle’s #feathers , another #tool song, #thepatient (can you tell that I’m a big fan of Maynard James Keenan? I have everything that he’s released on my phone) and when I’m dealing with my #PTSD , there’s nothing like The (Dixie) Chick’s “Not Ready to Make Nice “and L7’s “Sh*tlist” and a whole lotta Hole.
    I’m into a lot of different genres, but mainly #Metal and #Punk (not pop punk! I don’t call that punk. It’s alternative.). And if I’m not in a motorized cart, having a good day, and I can see the security camera, then I’ll start dancing along the aisle (but not with other customers in it unless I can tell that they’re a punky/gothy/metal head/freak and then I’m talking bands with them.
    #Music has also been a way for me to meet people with similar tastes. I can’t go to listen to live music or go to a concert because of my #Dysautonomia . I don’t think that they would let me bring in a couple gallons of Gatorade. But I also made a battle vest with band patches and tons of band buttons (mainly punk bands and metal) and people will comment about this or that band, and ask what my favorite album is and my favorite song by that band (I know at least one song by each band and I’ll either name the song that is considered the best or an obscure song by a band that is mainly associated with just one song (like the Sex Pistols—I like the song “Pretty Vacant”) because I don’t just listen to one song, because you’re going to miss out on so many great songs that weren’t played on the radio.
    This is what I collect. Music. Musicians. And I’ll research them and tell people obscure things about that musician or band-like that during a Nirvana concert, Kurt Cobain saw a girl being sexually assaulted in the audience and he didn’t say a word but put down his guitar, grabbed the guy and hung him from his belt loop on a prop so everyone could see him and then Kurt went back to his chair and as he was picking up his guitar he said into the microphone while looking towards the guy and said “Now you get to be exposed.” Not the only time a musician has come to the rescue of a fan.
    If I’m not listening to my music, that’s a signal that I’m extremely depressed. Because it’s such a part of my coping methods when I’m dealing with pain or exhaustion or anxiety or depression or dehydration or nightmares. I’m not savvy enough to post my parts of my favorite playlist, but for anyone who is dealing with a #chronic illness that has changed their entire life (which one doesn’t?) I highly recommend listening to TOOL’s #invincible from the Fear Inoculum album. And if you’re dealing with #PTSD , listen to A Perfect Circle’s #feathers . That song is like Maynard’s supporting you in your recovery.

    Post

    Light at the end of tunnel is a train.

    Just when I thought I was getting some answers & help regarding my spine issues and my hands being swollen. All this crazy stuff with me difficulty getting doctor appointments. My new primary doctor sent me for blood work and I have some not great results. It seems my bun-creatine ratio is High+ MCHC is Low ( signs of anemia) Carbon Dioxide in blood is High- there was slight blood in urine but also noted Rare Hyaline cast in urine (indicator of kidney disease). I think I want to throw up I don't know whether I want to cry or scream in frustration and anger. Still waiting to see the rheumatologist about my swollen hands knuckles leg foot. Finish up with my nerve ablations in my lower spine. And now this. I'm sensing (feeling a panic pulse) a medical tsunami and I'm just waiting to get hit.
    #ADHD
    #Anxiety
    #chronic pain
    #Costa chondritis
    #idiopathic Angioedema hives
    #Fibromyalgia
    #Baastrop syndrome
    #Osteoarthritis
    #Osteopenia
    #rheumatoid Arthritis
    #Peripheral Neuropathy
    #raynaud 's syndrome
    #spinal stenosis
    #Bilateral impingement syndrome
    #Pleurisy W/D
    #Shingles in the left eye

    Question
    See full photo

    Has your Ophthamologist been able to identify a cause for your Adies Tonic Pupil?

    #idiopathic #Diabetes #Viral #prp #PanretinalPhotocoagulation #AdiesPupil #EyeSurgery

    Post

    FULVIC MINERALS ARE THE TRUTH! #Cure #idiopathic #nutrition

    if you have any type of "idiopathic" condition like i do, please be aware of the link between the gut bacteria and your health. this applies to mental disorders, neurological disorders or anything that the doctors can't understand. most of you are probably aware of this information, but it bears repeating because it's so essential.

    i have tried almost every food and nutritional supplement there is - i've even had stem cell therapy - so i speak from years of practical experience. no matter what condition you have, HEALING THE GUT might be able to help or even cure you. FULVIC MINERALS are excellent for facilitating that process. PLEASE read about the benefits of fulvic minerals and feeding your good bacteria. there's plenty of information online. PLEASE DO YOUR RESEARCH.

    there will be plenty of doctors that will tell you there's nothing that can be done for you, so just go home and suffer. that's what happened to me. THEY'RE WRONG. i'm here to tell you that an organic vegan diet; home-brewed kombucha or other home-made probiotics; prebiotic fiber, polyphenols, and fulvic minerals; optimal vitamin and macronutrient levels; and avoiding foods that cause allergic reactions CAN DO WONDERS.

    never give up on trying to get better.

    Post

    Living with chronic pain

    Reading the post of #opioid and #ChronicPain I thought I'd share. Eight years ago was my first symptoms I knew something was wrong. 3 years later I finally had my diagnosis but at that time all tests were negative as to why so #idiopathic peripheral neuropathy was my diagnosis. This last year my A1C showed diabetes. I cant even
    begin to tell how many times i cried because nothing was working for pain relief. I started on gabapentin and increased increased increased added nortriptyline and increased it twice. I want to fall asleep driving. Sometimes driving the 8 miles into town was even not safe. And still at night my pain continued though not as severe but I was unable to lie down to sleep. My regular Dr listened and I was slurring speech so reduced some on both medications. Added a once a day opioid. I know I don't take them enough but to know they are there if I need them. Some nights I am up all night but the pain isnt severe enough to take one but enough to not let me lie down. My Neurologist stated they have nothing to do with opioids. I think of all the people with pain they see and will be in a slurred state but still unable to get pain relief. I really haven't found a good balance. I just know I don't want to become addictive....taking pain meds because I "might" get pain. I have just started acupuncture to see if it will help. I am just thankful my family doctor has listened to me, gave me guidelines I have to follow for him to continue ordering my opioids.