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    Community Voices

    Totally confused

    #PseudotumorCerebri . I was diagnosed a month ago and boy has it been miserable. However they didn’t exactly tell me what it is just that fluid builds up creating pressure. One if my friends says it’s like having a brain tumor without the tumor. Which I can believe. So can someone explain what this is to me please.

    Amanda Van Eps

    Patient Management and Consent in a Post-Roe Era

    I was diagnosed with a brain tumor in 2020 as an incidental finding after a routine MRI for migraines during the height of the pandemic. This was not my first diagnosis with a chronic or invisible illness, but proved to be an annoying diagnosis. I say this because it came with more questions than answers. Until you have the tumor removed or biopsied, there is no way to be 100% sure exactly what it is beyond the educated guesses of your amazing medical team. In what I thought would be unrelated, I had an IUD eject itself a month or so prior to finding the tumor, so I was in the market for a new form of protection and menstrual control. Because I also have POTS, birth control has been extremely helpful in controlling some related blood pressure and migraine symptoms. While updating my OBGYN provider to get a new IUD, I was refused until I received clearance from my neurologist. The reasoning was that the hormones from birth control may or may not worsen the status of the tumor. Now while I agree it is the provider’s job to inform the patient, the patient’s consent is the only consent that matters. As if I didn’t understand the repercussions when the duality of the hormones from an unwanted pregnancy wouldn’t be just as precarious, but obviously more so. My medical history is complex and nuanced and that IUD helps manage other conditions I must deal with on a daily basis. I did not have the luxury of just managing the tumor and leaving other conditions and their symptoms to be reactive. I wrote my neurologist a light, but snarky email about how I’d rather be afflicted by the hormones of birth control than those of an unwanted pregnancy. His office faxed a letter to my OBGYN to clear me for my IUD, but the fact I had to ask him for birth control sits oddly to this day. I share my story because we are now in a post-Roe climate where patient autonomy, needs, and consent are often secondary to blanketed thought. Thirty-eight percent of American women face one or more chronic illnesses. The symptomatic nuance chronic illness places on childbearing years will never see the inside of a courtroom because justices are not qualified physicians. These blanket bans by the states will never know how to regulate exceptions, acknowledge women as whole patients, or address their patient outcomes. Now that the Supreme Court has asserted that all uterus-bearing patients no longer have the right to privacy, there is no longer a threshold or standard for patient care independent of a state’s belief systems. Risk assessments are no longer the choice of just the patient, depending on your location. Where does this leave an already complicated relationship between physicians, their patients, and the conditions they’ve vowed to treat?

    Community Voices

    I’m new here!

    Hi, my name is mzjan. I'm here because I have Bipolar with a Brain Tumor twist.

    2 people are talking about this
    Community Voices

    Physical pains

    Was just wondering if this happens to anyone else . If I get a headache I think I’m dying or have a brain tumor or an aneurysm, etc. if I get pain in my legs I think it’s a blood clot or something severe. Every pain I get I think I’m dying and it’s so bad I just lose it and call my mom who just says you’re not dying . And my boyfriend says I think If you were really dying you wouldn’t know. Well , these things aren’t helping me. I think I’m dying pretty much every day and it’s scary. My doctor , he just says this is normal with anxiety. This is no life to live. I’m not living if I feel like I’m always dying. I need help .

    11 people are talking about this
    Community Voices
    Community Voices

    Thought for the day

    <p>Thought for the day</p>
    15 people are talking about this
    Community Voices

    New and wanted to share

    Introduction #chronic pain #multiplesclerosis #diabetes #internalpressure #fibromyalgia #depression #braintumor #meditation #migraines #inoperabletumorspinalcord #neuropathy #herniateddisks #lost #ready to give up.

    My name is Kathleen and I am 57 years old.
    I was sexually, emotionally and physically abused for the first 32 years of my life.
    2010 Had surgery and follow up treatments to remove a brain tumor on my pineal gland.
    In 2012 I was diagnosed with multiple sclerosis and various other Neurological disorders and put on Fentanyl and Oxy for pain for over eight years.
    In 2021 I was tired of being in wheelchair and laying in bed 20 out of 24 hours a day for years. So I decided to get off all the narcotics. And went into a hospital to do so.
    And then discovered that my neuropathy had gotten worse and that my spine had herniated discs as well as a tumor on my spinal cord. I have trouble walking, and I fall a great deal. But I refuse to go back into a wheelchair or to hide in my bed anymore.
    Seriously sleep disorders, I have slept less than four hours a night for the past 16 months.
    So I have been on a new path to try and discover the universe within me. I’ve done meditation for over 159 days and while I find that comforting at times I have not been able to relieve the chronic pain and internal pressure that I feel in my torso, head, and back.
    I have not given up though it is hard to live life. I am ready for the next transition whenever that might come. But I guess I’m reaching out so that I can connect and keep on going.

    11 people are talking about this
    Community Voices

    Mental Health and Violence

    Part 1 of 3 I  am part of a wonderful group on Facebook and someone in the group just shared a post earlier this week. they allowed me to share it here while keeping them confidential:

    “So today it’s my turn to share something I’ve been struggling with in the hopes that it can help someone else. I had one of those moments where you suddenly figure something out and wonder how the hell you missed it. For the last couple of months, I have been subconsciously holding my breath. I’ll be working or driving or just goofing off watching Youtube, just regular activities, and suddenly I’m out of breath and I realize I’ve been holding it without meaning to. It really freaked me out. Imagine if you looked down and found a note in your handwriting that you had no memory of writing. Your hand just wrote it without your conscious direction. It’s really disturbing. So, I looked it up. Apparently subconscious breath holding is not uncommon. It’s an indicator of stress. It seems like such a ridiculous thing. Most folks get headaches, or stomach trouble, or #Hypertension , but I gotta be different. Apparently, my body’s reaction to stress is to try and choke myself out. The problem is, I don’t feel stressed. I’m generally pretty happy. Life is good for me these days. It’s really been bugging me. I’ve been doing breathing meditation and fasting- both are easy ways to reduce stress and it has been helping. Then, today it finally clicked. I was talking with a coworker about how rough the last couple of years have been when it hit me. It’s not just the last couple of years. In the last 9 years I’ve moved back home, I’ve changed jobs three times, all three of my remaining grandparents have died, my Dad died, my stepmother died, my niece died from a #braintumors , a close friend committed suicide, my mother had a #Stroke , I lost two friends to #COVID19 , then my wife and I got #COVID19 and on top of all that, the government shot our economy in the foot right in the middle of me trying to build a new house. It suddenly occurred to me that I’ve spent almost a decade waiting on the next punch in the gut. So that brings me to a question. How many of us are walking around stressed the hell out and don’t realize it? How much of the violence and general craziness going on these days is because of people just like me? But they finally hit that last straw.”

    First, I want to say that those last few comments speak volumes. As a society, we spend a lot of time arguing about gun control. I personally am not a fan of guns, I constantly worry about my daughter being shot at school, but this just started becoming a major concern towards the end of my time in high school in the late 90’s. Right before Columbine, there was a shooting at a high school in Pearl, Mississippi, the one my now husband would have attended had he not moved in 7th grade. He knew some people who were shot but recovered, he knew some people on the list the killer never made it to and he grew up down the street from the killer. The reason this story was not as big as Columbine, is because not as many were killed, because the Vice Principal of the school went to his truck, got his personal gun out, and held it on the student to stop him from hurting more, and possibly moving onto the middle school. The student was arrested and is still in jail today. He did not get the chance to kill more students or himself. The Vice Principal was awarded by some for this, and condemned by others for holding a gun on a student. I personally think he did the right thing, and this was one of the few examples of a good guy with a gun actually working out well.

    Because of this and because this developing into an issue as I aged, I know it is not guns alone or it would have been before then of course. However, we are also the only country who has this issue so bad and also has the loosest gun control, so I see why some gun control is reasonable to many. I always read stories from other countries about the first major killing in a decade, and it will be a bow and arrow attack that killed a few people, or a car driving into people (which also happens here). I also once read about a school stabbing comparable to a school shooting here in regards to the number attacked, but none died in the stabbing while many died in the shooting. There is also a big focus on #MentalHealth . I think this is a little closer to the root of the problem, but still not as simple as that. Most people who snap and do something violent have not been diagnosed with major mental disorders, and some thinki

    Community Voices

    3 people are talking about this
    Community Voices

    How can I still be alive after everything I've been through

    <p>How can I still be alive after everything I've been through</p>
    5 people are talking about this