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I'm new here!

Hi, my name is 901BluesBirdy. My diagnosis includes fibromyalgia and chronic fatigue syndrome. I have joined to connect with others who experience chronic pain in order to obtain advice on how to manage my daily life. I am presently dealing with a flare and am optimistic about the prospect of maintaining my quality of life. However, I am in search of information regarding the availability of mobility aids and resources that can offer me daily support.

#ChronicFatigue #ChronicFatigueSyndrome #ChronicPain #ChronicIllness #ChronicLungDisease #Asthma #Fibromyalgia

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I'm new here!

Hi, my name is Thelonelycrow. I'm here because I have been struggling with intense loneliness for pretty much all my life, but with the added burden of my health issues and the burnout, everything has become increasingly difficult. As much as I am trying to handle everything by myself, the intense loneliness is driving my crazy, and most often I end up procrastinating & doing nothing (which eventually sabotages a whole lot of things for me), while all I want is just some human interaction.

#MightyTogether #Depression #Migraine #Fibromyalgia #RheumatoidArthritis #Anxiety #Asthma

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Mother’s Day

May God bless each mother on this day. Motherhood brings with it many challenges, but in God’s strength we can be what we were designed to be. #Fibro asthma #Arthritis migraine. Etc

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Sigh... Well I tried.

Well I took a tramadol and a Norco about an hour before we went to the art studio open house. I was so hopeful that I could handle it. Unfortunately after about 10 minutes I needed to sit down. The pain spiked to 8 and I couldn't breathe so I sat down and used my rescue inhaler. We decided to go home after we had been there for about 1 hour. We only got to see one art installment. I felt horrible not being able to see more on the other floors but Pauley said I was doing what was right for my physical health. My right hip is sending sharp stabbing pain down my right leg.

I was hungry when we got home. I tried getting a fancy hot dog from the food truck at the art event but they didn't have any hot dogs. So once we were settled in Pauley asked me what I was hungry for. I decided I just wanted a corn tortilla with melted queso quesadilla cheese. I ripped it into pieces and dipped in some avocado ranch sauce. Wow it was delicious!

I got a lot of compliments on my shirt. I wore the one with the newspaper clippings about the JFK assassination.

I need to get a few pairs of board shorts.

#BackPain #Asthma #foodieadventures

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My Covid Vaccine Injury and Dysautonomia

In February 2022, I received my third COVID vaccine shot, the Moderna booster, within 7 days I began having neurological issues that increased over time and it never went away. I went to multiple specialist to go through test and figure out what was going on. I was diagnosed pretty quickly with Postural Orthostatic Tachycardia Syndrome, I also have Chronic Fatigue syndrome, Persistent postural perceptual dizziness, vestibular dysfunction causing severe migraines, and a multitude of other weird symptoms. I go to physical therapy and I’m in a long term clinical trial for people with long COVID at the infectious disease clinic at Stanford. I went from running 3 miles a day to not even being able to stand or walk to the bathroom without having tachycardia, breathlessness, hypotension, full body numbness, extreme fatigue, not being able to verbally speak at times, choking on my own saliva and a plethora of other very strange symptoms. There seems to be a lot of skepticism in the medical field and our immediate communities due to the divide from politics, about vaccines causing injury. I just feel like it’s gotten to convoluted and derailed because of this and we can’t even focus on trying to find out why some of us have reacted to the vaccine. And people like me, which there is actually a lot of us, are being vilified and mocked for political gain.

Vaccines are supposedly safe, but yet there is a compensation act in place just in case and like anything else, there is always a risk. So to me, that means they are not completely safe if there is a potential risk. If that’s the case then why is it so hard to believe that some peoples bodies can’t handle a vaccine as well as others? Don’t you think that the healthcare system should not be providing a “one size fits all” treatment?

I’ve been researching since I got sick because I was ostracized, gaslit and abandoned by our medical system and government. Left to pretty much figure out myself what I was experiencing. I was on waitlist for almost a year to see most specialist and when I had to go into the emergency for desperate moments, the hospital would run standard tests on me and send me home with either a tachycardia diagnosis, asthma, migraines or anxiety. It wasn’t until I saw a cardiologist and my current neurologists (yes, plural) that I was given the diagnosis I have now.

At first, there was conflicting information regarding what caused my Dysautonomia. I had nothing else happen to me besides the vaccine. So I asked doctors, specialists, family, friends and people in my support groups about what I was experiencing, could it of been the vaccine. The doctors at first said it’s a possibility but highly unlikely. Now, they have confirmed it was from my booster shot and the likelihood was greater than initially expected. Meanwhile, I was called an “anti vaxer”, even though I have all my vaccines. And the only way to learn about my illness was to read and join support groups on social media. In which, I was censored and anything regarding vaccine and injury in the same sentence was removed. In my opinion, this is what caused people to be skeptical of vaccines. Especially the ones negatively impacted by the vaccine.

It has been very difficult to find full clinical trial studies on Covid Vaccines that have not been summarized. The summarized findings are performed and because they are summarized, it’s missing information that I would love to see, like how long were the patients monitored for and so on, or even a follow up years later.

Before all of this, I was not political at all, and I never questioned the science behind vaccines, I still don’t. But I do question the scientist and their motives since there seems to be a lot of incentives coming from big Pharma.

Going through all of this and being treated the way I was treated has really put a bad taste in my mouth. I no longer trust what I’m being told by the medical system or the government. And I still continue to be ostracized by my community, strangers, the medical system and the government. I’m tired of it. Not only am I 42 years old and disabled but I’m also dealing with being gaslit by everybody around me which is absolutely infuriating. You will never know how someone feels unless you walk a mile in their shoes.

Right now a lot is coming to light about people who have been affected directly by the vaccine but politics of course are taking precedence with naive people all over the board which is reopening the wound. I’m feeling completely defeated, sad, anxious and angry. Raw emotions are on high, I just needed a place I could write it all out.

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Keeping busy #Fibro #Asthma migraine #Arthritis polymyalgia rheumatica #sciatica

This morning I finished a quilt top. Now it will go to the church quilting group to complete

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Bird of Paradise

Our Bird of Paradise produced a flower. It has not shown us a flower for a few years. It's so interesting and beautiful.
#Nature , # bird of paradise,
# flower, # asthma , #Sarcoidosis ,
# spinal cord stimulator

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