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Chelsey Perry

Tagged with: POTS, Heart Issues,

What was your life like before you received the COVID-19 vaccine?

Sometimes it is hard to remember in all honesty, for two years I have been dealing with what is far from normal. I was 31 when I first took the shots and prior to them I was living life. First and foremost I am a mom of two young kids, now 7 and 5. I was able to enjoy every minute with them and be ok with what was coming next even the unknowing, now I fear the unknowing. I was carefree, outgoing, fun to be around, life of the party, fearless, full of love, and loved life. Although I am much better than I was the first year after the vaccine I still am not at my normal and I fear I never will be. As a healthcare worker, I truly enjoyed my job, I loved taking care of people , it is my passion. My mother has always told me I have the biggest heart she has ever seen and I wear it on my sleeve. I am one of those people who would do anything for anyone even if left me without. Now I find myself second guessing the very career I fought to create for myself and my family. Being on the other side of things and being the patient was devastating when it came to adverse reactions from vaccine, no one would believe me. I was made to feel crazy and that I was making it up for a time being. I just wanted the same care I gave to all my patients on any given day. Am I not a human, do I not know my own body best, why would no one listen to me. My family was my rock, though on my worst days as they continued on and on, even my family had a hard time with my symptoms. On the inside I could tell they just wanted me to snap out of it because they didn’t like the person that was being consumed by such an array of symptoms, yet I couldn’t. It was so hard for them to see me change so much. I was honestly scared of the person I was becoming, for a year if I wasn’t forcing myself to work, I was living in the shower or bed crying out of fear, pain, anxiousness, impending doom, and many other horrible symptoms which I had never experienced. I was for the most part healthy, with only a thyroid disorder. The sad thing I kept telling myself is it could be way worse, people out there were losing family members and the ability to walk.. I just knew I had to get through it.

Describe the symptoms and the timeline of the reaction.

My first shot I had injection site soreness along with minimal flu like symptoms. I was so hesitant to get my first shot, I just was so unsure, as a healthcare worker is it really safe as fast as they came out. We were already being warned of mandates being frontline workers and I was at the bedside with some of the sickest of the sick, so I did it for my family, for my patients, for myself, so we thought. The vaccine will keep you from getting it, the vaccine will prevent you from spreading it, lie after lie after lie from the very people and governmental groups we are suppose to trust.

Then came the second shot, I believe it was the day after the shot, I called my physician asking if it was normal for me to of started my period weeks early with tons of micro clots filling the toilet and huge clots even unable to go down shower drain. (TMI) She stated unfortunately we don’t know enough about them but she stated it surely is just fine. Few days go by and I was getting light headed and dizzy all the time, my I watch one minute was saying HR in 40s/50s then 160s randomly so I called her office and made an appointment, I honestly thought it was my dieting/trying to be healthy and my body just wasn’t use to it. I was also drinking 100 ounces of water a day so maybe an electrolytes issue. I go in few days later to appointment and she does work up on heart, monitor, labs, etc.. everything comes back normal so she works me up for having blood glucose issues cause diabetes runs in family. Everything again comes back normal. A month has gone by and my arms have been going numb all the time from doing nothing, sitting/standing doesn’t matter sometimes even in my face which was the worst part, random times where body feels like on fire/ hot to touch, I go back in, she orders more labs while stating it is just anxiety, everything is coming back normal in her eyes. So she tries me on anxiety medicine after anxiety medicine that don’t mesh well with my body, I just don’t like taking medicine. She consults other doctor in clinic, they agree anxiety. Another couple weeks, now I’m having pain neck/ upper back all on right side same as shot, also wrap around to my front under breast like someone squeezing me, I go back to another doctor she rules out gallbladder and runs labs, all comes back fine. I call two new doctors to get different opinions, internal medicine and neurology. I wait month for appointment, now having weird panic attacks where heart rate will shoot up and drop back down, I no longer want to do things I used to like to out of fear and wanting to just stay home in my safe space. In July 2021, I go to ER with stroke like symptoms and convulsions/tremors, weird pain in right side of head with drooping on right side and weird feeling around eye with muscles, they mark it up as anxiety. Neurology appointment does testing, internal med does testing, everything fine, EMG, nerve conduction study, work up for auto immune. I’m now even having sleeping issues, I would wake up and see dark spots in certain parts of my eye, weirdest thing when I would wake up I wouldn’t be able to move and I would have to really think about it and make myself. Pain all the time in my neck , back, tightening in calves, numbness tingling hand/foot all on right side. Keep going back to doctor scared because things keep happening with no explanation and this impending doom just won’t go away. This full of life 32 year old now doesn’t even want to leave her house, and lets not forget the fatigue. And if I didn’t rest throughout the day everything was that much worse yet everything normal just anxiety they say, I think not. I’m even being my own researcher continually sending articles to neurologist and internal med doctor saying what about this thing, or this, maybe the vaccine????? Even if was they said, no one would admit to it…… my heart just breaks…. Started going to see natural doctor who believes me also while neurologist sends referral to Wash U in St. Louis, MO for possible SFN yet unlikely they think but I suggested based on articles found. 14 months after vaccine I go to referral at Wash U because had to wait 4 months for open appointment, they also don’t believe me but due to significant other fighting for me and me crying like a baby, they agree to do new MRI of brain and skin biopsy with autoantibody panel to rule of small fiber neuropathy. After I waited months for this appointment they just wanted me to wait out symptoms and see if relieve themself with more time, top doctors are suggesting such!!

Weeks later it comes back positive for SFN and plexin D1, due to autoimmune response which also suggests painful SFN, they stated. At this time I had already been placed on Cymbalta for ANXIETY and possible nerve issue stated internal med doctor and naturopathic doctor had been doing ozone therapy/infra red therapy/vitamins/minerals /etc…. I was better but not my normal self so Wash U didn’t recommend immunoglobulin therapy due to side effects and me slowly already getting better they stated but to call if got worse. At that time the worst was when numbness /tingling/burning comes into my face. Which still occurred but not daily. And I was scared to yet again put something else into my body since I was progressing in a positive way. Over the next course of a year I have continued following insight of naturopathic doctor because form beginning he believed. It is so crazy to say a doctor doesn’t believe his patient but for us it has been all to normal, sad yet normal. Two years out and I still have symptoms on right side of body randomly during flares some worse than others and whether I’ve just gotten use to such or It really is better I’m just not sure. I just got to a point where I refused to allow this injury to keep ruining my entire life. I just want accountability and transparency not only for myself but all the others who are vaccine injured. I’m sure I even missed mentioning some outlandish symptoms but in honesty I’ve always been one of those people who forget the bad memories so some I just don’t remember yet occurred.

Describe the solutions that helped your symptoms

I was in a bad state of mind the first eight months and nothing was helping things were just getting worse, I was crying all the time so when I was first put on Cymbalta that first October, it truly saved my life, it definitely took the anxiousness down along with the nerve symptoms, not all the way but enough where I could somewhat live. Also restIng really helped, when my symptoms were bad, I would go lay down and things would ease up. The naturopathic doctor really helped in overall healing with ozone therapy, infra red therapy and placing me on vitamins and minerals he found my body to be lacking in. Healthy lifestyle in general, intermittent fasting, no sugar, low carb, plenty of veggies/good meats, plenty of water… Phenobarbital given by naturopathic is one of the most recent things I have been put on for facial nerve symptoms and it has really helped to alleviate on majority of days. Face symptoms have always been my most feared symptoms so having that less is definitely a life saver. My mom and my significant other were my saving grace as well, I see so many out there that said their families alienated them or called them liars. I was so lucky, at my worst when I was scared of survival I would call my mom and she would be there. My significant other spent many nights holding me why I cried in fear and the unknowing. Facebook groups, twitter spaces, react 19, knowing people were out there like me that I could turn to and confide in. Though sad, lucky to have them.

Which solutions were not helpful?

Almost all anxiety medicine because yes anxiety takes a part based on symptoms we are having but it is not the main dx. You have to fix first what is broken instead of placing a bandaid due to the unknown. Doctors need to figure this out because we exist and it is not just anxiety. Our symptoms are causing the anxiousness which is well explained based on wide array of symptoms.

What would you like others to know?

Others injured- you are not alone, I’m so sorry you are going through this and I know time is one of the hardest things to realize helps with healing but it will get better! There are so many groups out there to help so get the help you need. Reach out, ask for help, don’t do it alone when you don’t have to. We will get answers, we will hold them accountable, transparency is coming. Gaslighters- I’m sorry you didn’t think out of the box for those who were broken in front of you. Yet you refused to listen. Working in the medical field one of the number one rules is listen to the patient because they know their body better than anyone. Yet no one is listening to the golden rules, why?! Just because it isn’t known doesn’t mean you can cross it off as nothing. Be open minded, listen to those who need it the most. Imagine being a patient yourself. I would of never imagined being a patient would feel like this, it definitely opened even my eyes and I have always put being a patient advocate at the top of my to do lists! The government/CDC/WHO- never again do something that has the ability to put millions in jeopardy due to the unknowing because lack of accessibility of knowledge. Be transparent, have the facts at hand. Don’t utilize scare tactics into getting the human race to do what you want! Do your damn job!
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