Pituitary Tumors

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    So much stuff!!!

    I have been having a really hard time and it’s been a reallly long year for my family.
    About me I have Fibro, RA, IC/BPS, sciatica AS, DDD, SpinalFusion spinalstenosis etc..

    I have my oldest brother who had a stroke this year. We have always spoken and never had and any issues ( unlike my other siblings that’s another post).

    When I was younger my brother more than once sexually assaulted me.
    I don’t know if it actually considered that
    I was sexually assaulted by my father when I was a child and raped at 15 by an older man.

    My brother who is 20 years older than me tried to kiss me on more than one occasion this was when I was in elementary school. He I found out a few years ago was also along with my brothers and my sister were sexually assaulted by my father as well.

    So the situation is idkw but after he had his stroke I just couldn’t speak to him.
    I did only speak to him because of my mother. I did tell my mother when I was younger and I can only say she made excuses for him and begged me not to not talk to him.

    I love my mother very much and we have a very good relationship except for this issue. So I haven’t spoken to him since his stroke and I feel extremely guilty for it.
    He has been trying to get in contact with me but I have thwarted contact.

    My husband knows and of course he says I should not feel guilty and doesn’t understand why I had been talking to him all these years.
    I don’t know if I should say something to my mom who is 85. I don’t think it would do anything but upset her or cause and arguement. Or bother saying anything to my brother. Which idkw I feel bad saying anything which doesn’t make sense.
    I know I should have gone to therapy years ago but does anyone have any suggestions how I should proceed in the interim ?

    #SexualAbuseSurvivors #SexualAssault #SexualAbuse #SexualAssaultSurvivors #ChildhoodSexualAbuse #SexualTrauma #SexualAssaultAwarenessMonth #RheumatoidArthritis #Fibromyalgia #Fibro #InterstitialCystitis #sciatica #DDD #AnkylosingSpondylitis #painfulbladdersyndrome #LymeDisease #ChronicIlless #ChronicLymeDisease #LymeWarrior #Spoonie #PituitaryTumors #PituitaryTumor #SpinalFusion #gastric sleeve surgery #Anxiety #CPTSD #PTSD #PTSD

    8 people are talking about this
    Community Voices
    Community Voices

    Chronic Pain vs Pain Mangement

    I have chronic pain I have Fibro, RA,
    ankylosing spondylitis, IC/BPS, sciatica, spinal stenosis, arthritis etc.....

    So I am being told by my Pain Dr that I cannot be on pain meds for the rest of my life. Now my pain is chronic as in forever like we know these dx’s are uncureable.
    So how can a pain dr take the stance of taking away my pain pills every month ?
    She said to me you can’t be on pain meds forever.

    You think this is what I wanted to be on a ton of pills a day?
    So you’re start weaning me without telling me down. Thing is I foreshadowed this coming so I got my medical marijuana card. In hopes that this can help.

    I realized beginning of 2020 she had cut one month by 25 pills without telling me then she started talking to me about cutting more and more and more.
    From when we started (year and a half) she already cut me down by by 75 pills and she’s not finished.

    I am pisssed as all hell but my husband doesn’t think it’s a big deal. I’m just like if my conditions weren’t chronic and uncureable ok but I’m still gonna be in pain.

    4 years ago I had a gastric sleeve so a lot of medicine I was on I was told I could no longer take because stomach. No longer take inflammatories. Now at the time of the surgery I was also on OxyContin for quite a few years by then.

    I was told I could no longer be able to take them and was also told by at least 12 dr’s that I would either never be able to get off or it would take years to take me off.

    Well we figured out a schedule and I was off them in a month and a half. That’s when they put me on what I am now and she has been trying to crazy weening me every month.

    My main concern is I’m 52 I’ve been a warrior now for 20 plus years. It makes me thou really scared to think of what my life is going to be like at 60 or 70. The woman in my family live till late 80’s. Any body else dealing with a similar situation?

    #RA #RheumatoidArthritis #Fibro #Fibromyalgia #ic /BPS #InterstitialCystitis #PTSD #sciatica #PituitaryTumors #Nervedamage #AnkylosingSpondylitis #LymeDisease #LymeWarrior #ChronicPain #chronicpainsufferer #DDD #Migraines

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    B Butcher

    My Worsening Autistic Meltdowns Were a Sign of Breast Cancer

    We have all heard of the dreaded meltdown — those moments of terror in which we autistic people become a force of nature while our nervous system purges all of its stored anxiety. Some of us have triggers where the anxiety is instantaneous. Others have a tipping point at which the anxiety has reached its threshold and the sensory overload meltdown runs its course. However, what if you diverge from your normal pattern of meltdowns? Usually, my meltdowns are completely sensory-related. I will reach a tipping point and it all comes out. I have no control over it. Meltdowns are involuntary. On a normal meltdown day, I may throw things, say things I don’t mean, punch a wall, hit my head, stomp my feet, and then it’s over. I recover, usually in the shower, and then sleep for hours as my body adjusts to the neurological reset it just experienced. I get up later and get on with my life. However, what do you do when for no apparent reason, your meltdowns take a turn for the worse? A potentially fatal turn? In the late spring/summer of 2019, my meltdowns did just that. They became a threat to my life. I had hit my head and had so many concussions that landed me in the ER that my insurance company called to make sure I wasn’t being abused. No, I told them, I’m just Autistic. My meltdowns increased in frequency and intensity. I went from having an inconvenient meltdown once every six months or so to having them once a month or shorter intervals. I have a scar from an injury I sustained during a meltdown. I won’t go into details because they may be triggering for some. Needless to say, I was actively fearful for my life. I reclused and avoided all stress. Friends that didn’t understand autism were dismissed because I was too high-strung to properly educate them. What was going on with me? At first, we thought it was my recent weight loss that was throwing off my balance. But when my meltdowns didn’t calm down as expected, I recalled that I had read in several blogs, articles, scholarly papers, and more that an autistic person may have an increase in meltdowns if there is an internal illness that has gone untreated. Cysts, impacted teeth, IBS, pituitary tumors are just a few to mention. This isn’t only in non-verbal Autistics — it can happen in Autistics that are considered low support needs as well. When I read this, I realized that my nervous system may not actually be trying to kill me, but instead, it’s alerting me to something serious. I became an Autie with a mission! I made appointments with my neurologist, primary care physician, psychiatrist, gynecologist, audiologist, and all the other specialists I could think of. I have had more MRIs, CT scans, and X-rays this year than I have had in my life. Not to mention the EEG and the plethora of blood work. I didn’t have any latent STDs, my pituitary tumor was well under control. I saw something in an old overlooked test result from years back that implied I may have low immunoglobulins, so I insisted my doctor look into that as well. My routine yearly checkups came around and I put off my mammogram because I had been so overwhelmed with the number of medical demands I had put myself through trying to find answers. I just couldn’t do it because I might risk a meltdown. I rescheduled it for December. A couple of months out. The prior year, 2019, I felt a lump, thickening, something was wrong in my right breast. After some testing, I was told it was just dense breast tissue, so putting off my mammogram seemed a pretty low-risk decision. I went to my mammogram in December and four days before Christmas, I was told I had two irregular masses in my right breast. The timeline fits perfectly. They say by the time you feel breast cancer, it’s been in your body for two to five years. I can do the math, and if my body detected it in 2018 before I did, it would have begun to cause major meltdowns in order to warn me. However, I didn’t know how to interpret my meltdowns as a warning of impending medical trouble. I went in for a biopsy and it was confirmed that I have invasive breast cancer. Even since my mammogram in December of 2020, it has grown. Soon I will be meeting with an oncologist to discuss surgical options. While I’m terrified, I’m also thankful. Hopefully, with treatment and healing, my meltdowns will subside and I can live peacefully again! Meltdowns aren’t always sensory-based, and for me, they are rarely emotional. So when I was confronted with meltdowns that seemingly had no explanation, it was terrifying. I’m glad I have found the answer within as to why my meltdowns were so out of control. I hope this may be an insight for someone like me going through the same thing.

    Community Voices

    It's all connected! #Anxiety #PituitaryTumors #GutIssues

    *LONG POST ALERT*
    My mind has been going a mile a minute since January of 2020.
    I'm 31 years old. I've been experiencing gut-related issues since I was 25 and had visited multiple gastroenterologists who all suggested I go on PPIs long term and had been diagnosed with gastritis (wrong), GERD (partially correct), IBS (wrong) and the likes. After refusing to take the meds for many years and trying to holistically manage symptoms through eating clean, exercising, it was still unforgiving when I slipped up. Went to a new gastro and insisted he conducts an endoscopy. I needed to know what was going on inside. We found I have a hiatal hernia (part of the stomach protrudes through the diaphragm) so he suggested I go on PPIs for some reason. Decided to give it a go, but took the meds 3-4 times a week instead of 7 for a couple of months (I'm not comfortable with medicating long term for anything), still had the occasional attack so decided to take it as instructed for another two months coming to Jan 2020.
    The most bizarre thing I've ever experienced happened one afternoon. I could not fathom it at the time but I was lactating. Now I'm not married and I don't have kids. Freaked the hell out but wanted to observe, after 2 weeks it only kept getting worse. So went to a clinic nearby, found the hormone prolactin was exceptionally high. Found the PPIs had something to do with it.
    Also found a pituitary tumour in the process. Its super tiny at the moment.
    While beginning to process this, covid happened so the doctor visits have been on pause ever since.
    Now I read a lot about everything, hehe. I've had mild anxiety throughout my teens and after mid twenties it became severe anxiety. I always attributed my fits of rage and highly sensitive emotional states to anxiety.
    But after reading extensively about pituitary tumours and their link to anxiety-related personality traits, and the link between gut issues and mental issues, and stumbling across BPD, I do strongly believe I may be borderline.... And I am truly mind blown at how everything is connected!

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    Community Voices

    Has anyone else worried that if there were a health complication (unrelated to the pandemic), there could be nowhere to get treatment?

    <p>Has anyone else worried that if there were a health complication (unrelated to the pandemic), there could be nowhere to get treatment?</p>
    97 people are talking about this
    Community Voices

    I Use Opioids and I’m Not An Addict

    I’d like to take this opportunity to discuss something important to me. An assumption, more along the lines of an uneducated opinion, has turned into a war of sorts that is tearing apart my country right now. That something being: not all people who use opioids are drug addicts.

    The problem with those who doesn’t understand this fairly easy concept comes down to observation bias. Those who label anyone who uses an opioid for any reason as a drug addict are refusing to see the distinction between people who abuse opioids and those who take them responsibly.You mean there are people out there who can use opioids and not become drug addicts? Indeed, there are. Case in point? Me.

    The Cyst
    The first time I took opioids, it was May 2003 and I was 17. I had a pilonidal cyst (basically an abscess on top of my tailbone) and the pain was unbelievable. It left me unable to stand up straight or put on anything tighter than sweatpants. I missed four days of school and almost missed my junior prom. An on-call doctor initially prescribed me Tylenol #3 (Tylenol with codeine). I must be a rapid metabolizer, because within minutes of taking it, the room started spinning. I was immediately drenched in sweat, and I puked everywhere.It took my mom hours to get me off the bathroom floor and to my pediatrician’s office. He instead prescribed Percocet, which thankfully helped the pain, but in a weird way. I remember when I came downstairs the next morning after taking one, my mom asked how I was feeling. I said, “I’m in the worst pain of my life. But I don’t care.” And I plopped down on the couch. Later that day, after we were able to drain the cyst, I remember trying to do my precalculus homework with Percocet in my system and it didn’t go very well. I felt spaced out and couldn’t focus. At some point, I said to my mom, “Why would people want to feel like this?”

    And guess what? I didn’t get addicted.

    The Wisdom Teeth
    Two years later, in May 2005, I had my wisdom teeth removed. My oral surgeon prescribed Dilaudid for post-op pain. That may seem like overkill, but he did this to avoid prescribing a combination Tylenol product, such as Percocet or Vicodin. This was actually a smart move on the surgeon’s part. Since many people don’t realize those medications contain Tylenol, they might take additional Tylenol for pain and end up acutely overdosing themselves, which can cause liver damage pretty quickly. As for the Dilaudid, the surgeon prescribed 8 or 10 pills and I used 2 or 3.

    And guess what? I didn’t get addicted.

    The Grand Canyon Sucks
    My body remained free of opioids until March 2013. Then a 30-mile hike through the Grand Canyon bummed out my already bummed left knee. I was airlifted to a medical clinic on the South Rim. (This earned me the “privilege” of being 1 of 350 people medevac-ed from the Grand Canyon annually. I think I should have at least gotten a t-shirt for that or something.) The doctor gave me a bottle of maybe 30 Vicodin. I didn’t think I was going to need them, but once the swelling in my knee started to reduce, the pain from the actual injury made itself known.Three weeks later, I had knee surgery to repair a torn meniscus. (The original knee injury actually occurred in February 2002 during a dance rehearsal, but I was too stubborn to do anything about it.) My recovery was to be more challenging because my surgeon sewed the tear closed instead of cutting most of the meniscus out. He decided on this approach due to my young age, 27 at the time. This should hopefully prevent early-onset #Arthritis. I was given a prescription for maybe 40 Lortab. I only used them for about 4-5 days after the surgery.

    And guess what? I didn’t get addicted.

    #Endometriosis is a Bitch
    One morning in April 2014, I was struck out of the blue with unbearable right-sided abdominal and pelvic pain. In the ER later that night, I received IV morphine for the first time. And I hated it. Yes, it was helpful for the pain I was in. (For those who are “in the know,” little me was given 8 mg. That’s how bad the pain was.) But what I now know to be the “rush” that people experience when the drug is administered was not even remotely pleasurable to me. Every time I’ve received IV morphine since then, I’ve had to steel myself to ride out the rush because I hate the feeling so much. Eventually, I was diagnosed with endometriosis. This is an extremely painful condition in which tissue that is similar to the tissue which lines the uterus is found growing elsewhere in the body. endometriosis lesions respond to hormones and break down and bleed, which is part of what makes it so painful. Long story short, my first surgery, an ineffective procedure known as ablation, ribbonrx.com/2018/03/23/life-after-endometriosis-surgery-ablation.

    I was completely bedbound when I wasn’t at work. The pain could only be somewhat managed by Percocet. When I got home from work each morning (I worked night-shift at the time), my husband would hold my hand as I lay in bed crying, waiting 45 minutes or so for the drug to kick in.I was in such horrible pain I sought a second opinion. In October 2014, I had excision surgery, the gold standard in endometriosis treatment, in Atlanta at the centerforendo.com. Within a few months of the surgery, my body had healed and my pain was virtually gone. I no longer needed the Percocet, and I was glad to come off of it after having been on it for six months.

    And guess what? I didn’t get addicted.

    The #BrainTumor and the Torsion
    Brain tumors hurt, y’all. Don’t let any stupid doctor tell you #PituitaryTumors don’t cause headaches, because ribbonrx.com/2016/07/09/zero-to-migraine, which eventually evolved into severe tension headaches. The only thing that helped those headaches was Percocet.

    At the same time in the spring of 2016 that I was being ribbonrx.com/2016/07/08/i-have-what-now, I was also experiencing severe right-sided pelvic pain that felt very different from endometriosis. Yet the source couldn’t be identified. Between the two extremely painful conditions, I was taking 10-12 Percocet a day and still my pain was uncontrolled.At the end of April 2016, my PCP called me in for an emergency appointment. I really thought for a bit that she was going to cut me off due to my frequently escalating doses of Percocet. But she said, “What we’re doing isn’t working. We need to consider a long-acting opioid.” After some trial and error and titration, I was taking MSContin 30 mg three times a day, but still needing 6-7 Percocet a day for breakthrough pain. My pain was such that taking all those opioids didn’t make me feel euphoric, tired, or even free of pain. They simply reduced my pain to a level at which I could function reasonably well.

    In July 2016, I finally had ribbonrx.com/2016/07/14/always-a-zebra (back at the CEC) to determine the source of my pelvic pain. It turns out I had a hernia in the broad ligament that was causing intermittent ovarian torsion and bowel obstruction. Within three weeks after the surgery, I had completely weaned myself off the MSContin of my own accord because I no longer needed it.Two months later, I had ribbonrx.com/2016/09/11/the-eviction-of-mini. I was in the hospital for 48 hours and given loads of fentanyl and Percocet. (Having your skull cut open through your nose causes some pretty intense headaches). Six weeks after the surgery, my constant tension headaches finally went away.

    And guess what? I didn’t get addicted.

    My Pelvis Is Still Mean
    I still have chronic pelvic pain that I need opioids to control. Per my OB/GYN, I have two options remaining. One, I can have another exploratory surgery. Or two, in his words, “You need to decide how much pain you’re willing to tolerate.”

    Aren’t those fantastic options?

    I’m currently working on ways to control my pain, from acupuncture to seeing a chiropractor to eventually seeing a functional medicine doctor. I use certain creams and lotions, heating pads and PEMF technology, all in an effort to get me to the point where my pain is controlled enough that I don’t need the opioids to allow me to be functional. I’m hopeful that that day isn’t too far off.

    Currently, if my pain gets really bad and I need 15 mg of oxycodone, it doesn’t make me feel high or even tired. If it makes me feel anything at all other than some, but not complete, pain relief, it’s nausea. I can’t imagine wanting to take any higher dose.

    All in all, I’ve been on opioids almost continuously for just over four years. Am I physiologically dependent on opioids? Yes. That simply means that if my pain is ever under enough control that I don’t need the opioids anymore, I’ll need to wean down my dose to prevent withdrawal. But physiological dependence and #Addiction are not even remotely the same thing.

    And guess what? After all this, I’m not addicted.

    Why Not Me?
    It’s taken me time to realize something about myself that might be helping to keep me away from the path of addiction: the feeling of being impaired is something I absolutely despise. I also very rarely drink alcohol for the same reason; I don’t like my inhibitions being reduced even the tiniest bit. The number of times I’ve been drunk I can count on one hand, and I’ve never been hungover even once. I feel the need to be 100% in control of my mind at all times.

    Another thought I had involves genetic makeup. Since research has shown that addiction certainly has some genetic component, perhaps the opposite is also true; maybe some individuals have a genetic makeup that makes them less likely to become addicted.

    Or perhaps my training as a pharmacist has something to do with it. During my second year (out of six years) of pharmacy school, I took an elective in Chemical Dependency. A pharmacy graduate of the university who became an addict taught the class. I remember him saying that pharmacists are six times more likely than the general population to abuse drugs, not only due to access, but to our education as well.

    But I also remember the day his wife came to class to tell the story of her husband’s addiction to opioids from her perspective, from his lies to her to his multiple arrests and jail time. She went around to every single student, took our hand, looked into our eyes, and said, “Please, don’t let it be you.”

    And I promised her: it wouldn’t ever be me.

    Read more at ribbonrx.com.

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    Community Voices
    Community Voices
    Community Voices

    Smiling through the Struggles

    There are some days when I can smile through my struggles. The struggles of learning to live life differently. Cooking, cleaning and showering are just some of the tasks that I used to be able to do with little to no effort. I just did them and did them well. I used to be swift and now I’m slow. And, that’s okay. I have to be safe; proceed with caution just to tidy up my place or prepare a simple meal or maintain my personal hygiene. When life takes a turn in a direction we don’t expect, what do you do? For me, I re-evaluate, re-access and try to remain hopeful. And, I pray for guidance. But, some days it’s a struggle to smile. And, that’s okay too.
    So, to all my fellow Mighties, smile your beautiful smiles. Try to remain hopeful while re-accessing or re-evaluating your struggles. You will find a healthy, happy and safe way to live life differently. Pray for the strength and mental clarity to get through it. It’s your battle but there are plenty of us on the field with you.
    #MentalHealth #PeripheralNeuropathy #ChronicIllness #HIVAIDS #HidradenitisSuppurativa #AdrenalInsufficiency #PituitaryTumors

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