Autoimmune Diseases and Rare Diseases Check-In

I received a flu shot yesterday. I experienced a horrible flare up last night. I took two of my emergency medications. I’m going to rest this weekend, watch movies, BuJo on YouTube and get next week set up in my planner.

Right after I got my flu shot within 30 minutes, I was super nauseous and had a migraine. I stopped at a convenience store for herbal tea. That tea was horribly too sweet. I put raw honey and lemon juice in my herbal teas.

The nurse had concerns. She said part of the needle is made with latex and the flu shot has some ingredients similar to eggs. I noticed the questionnaire asked about egg allergies. I always carry my Epipens. I explained my plan of action for the next few days. #spoonie #allergyready

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I hope you feel better, @Cocosurviving - do tell your primary care physician about your symptoms, and also use whatever reporting system your country or region offers to report side effects from the vaccine.

((( safe cyberhugs ))) I'm so sorry you are struggling like this. I hope you feel better.

((((Thank you)))).

I spoke with my immunologist and he said for me to never get the flu vaccine again. My primary care left the agency. I have an appointment the last week of December to meet her replacement. I’ll definitely be sure to let my new primary care provider know.

I called the FDA. I’m not sure which agency tracks adverse reactions. I requested a form be mailed to me.

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@Cocosurviving - you can report your adverse reactions to any vaccine through VAERS: Vaccine Adverse Event Reporting System (VAERS)

If you need compensation for your expenses to treat your vaccine complications/reactions, you may apply for compensation at the National Vaccine Injury Compensation Program, which is sponsored by HRSA: National Vaccine Injury Compensation Program | Official web site of the U.S. Health Resources & Services Administration

I'm sorry to hear about your primary care leaving. I hope you find a better replacement treatment team to help you.

Autoimmune disorders really need to be looked into. Some are caused by viruses of the past, some are purported to be "genetic" or "hereditary," and others may stem from things that science hasn't discovered yet, such as environmental bacteria (as opposed to viruses), certain combinations of viruses and bacteria mixed together, undetected mutations of pathogens, latent forms of conditions such as Mono/EBV viruses, Chickenpox, Herpes viruses, tick-based diseases, etc. Based on long-Covid, they are looking solely into long-Covid disease that may contribute to autoimmune disorders that weren't present before the virus. That's the latest from the NIH. However, they won't look into myalgic encephalomyelitis (which is the more appropriate term for chronic fatigue syndrome), fibromyaglia, and conditions that docs have primarily psychopathologized as somatoform disorders or fictitious disorders (when in reality, they are pathogen-based disorders and very real). Sure, they'll believe the masses of long-Covid cases, but not the masses of ME/CFS cases. It sucks. And autoimmune disorders do increase with metabolic disorders, such as obesity and diabetes, but obesity and diabetes (or even our hunger detection, full detection, and other related hormones) are NOT OUR FAULT! I'm sick of them saying just go on a diet, do intermittent fasting, etc. Easy for them to say until someone does that and then passes out or goes into a diabetic coma. And then blames all the fat people for heart disease, strokes, Covid-19, severe flu complications, their own diabetic coma, etc. It's NOT THEIR FAULT! Obesity is most likely caused by the additives they are putting into all of our food products, though the food manufacturing companies don't want to be responsible for creating a very slow and systemic endemic issue that is now generational and cultural. This then affects autoimmune disorders and responses. Some will get them and some won't. The common denominator is your genetic makeup. Epigenetics is a new field, and they will likely be the ones to find the answers to all these issues, but not if the politics keep infiltrating their scientific endeavors and stripping away preventative funding for appropriate vaccines, appropriate treatments, appropriate labs, appropriate screenings, and appropriate diagnoses. It's like they just want to ignore us and let us die to save the capitalist society from burdening themselves with taxpayer-based healthcare for the autoimmune. They'd rather just promote biased programs like fasting, dieting, and exercising. Even the obesity code book states that exercise and calorie counting only go so far. It's the processed and refined carbs and sugars that are messing up our metabolic systems, our overall health, and what we pass down to our children.

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Ups and downs

Downs
I was symptomatic for three weeks. Chronic Illnesses flare up. I attended three medical appointments last week… my primary care, endocrinologist and immunologist. I started another medication to control Hashimotos.

Fibromyalgia
I experienced a week of increased Fibromyalgia pain. I usually have a lot of pain in my legs, arms and tender points in my feet.
I have an appointment in two weeks with my Rheumatologist.

Depression
My depression is usually triggered by my chronic illnesses. I definitely have days I’m so frustrated with being symptomatic. I get upset about having a crapload of medical bills…..so much is not covered by insurance. I’ve applied for Medicaid multiple times and apparently I’m not poor, poor. I keep getting denied.

Venting
In a society that attempts to push toxic positivity on womxn, I’m glad groups and forums exist.
It helps to clear my head and frustrations. It’s a process to brainstorm and figure out solutions.
I really do get exhausted from chronic illnesses, health insurance bs, medical bills and out-of- pocket expenses not covered by health insurance.
It was hard receiving phone calls, letters and e-mails about multiple medical bills. They do not care if you make payments. Most hospitals don’t seem to relate to people who are on a fixed income and want medical bills paid off in 3-4 payments. They definitely fail to comprehend a lot of people with medical bills have several medical bills. I had medical bills sent to collections while I was making payments. I noticed that one hospital
listed the same medical bill twice. I did contact the credit bureaus.

Ups

I decided to space my medical appointments out more. I had appointments with specialists weekly and every two weeks. I started making detailed notes to get the most out of my appointments and having my provider check that I have refills.

When I’m symptomatic I sleep a lot. I took naps and went to bed a lot earlier than usual. I ate a lot of fresh vegetables and fruits.

I enjoy functional paper planning and attending virtual workshops. I use money management sheets to track my medical bills and the payments I make. I include the account numbers.

I pick workshops that interest me and align with the personal growth that I seek.
I popped in last week the last 30 minutes for two workshops (Monday and Thursday). Friday I participated in a full healing *🩹 gathering that lasted about 45 minutes.

I’m still going to bed early. My teenager school district is out of school this week. Parent Teacher conference is next week.

I’m excited that Feb 28th is Rare Disease Day. I have several autoimmune diseases but also have two rare diseases.

I hope everyone had a decent weekend. I started a new medication. I’ve been very symptomatic from Hashimotos the last 3 weeks.

All last week both my rare diseases have been going haywire.

Morning

Selenium
Vitamin B12
Vitamin D
Synthroid
Biotin
Zyrtec
Pantoprazole
Trelegy Ellipta

Bedtime

Allegra
Selenium
Magnesium
Famotidine
Echinacea and Yarrow
Famotidine
Atenolol

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I planned on grabbed items from Sprouts and Whole Foods however fatigue was very high today.

I’m going to Spouts and Whole Foods ASAP. I get all my fresh fruits, vegetables and smoothie ingredients at both places.

I decided to stay home, get a few things done around the house and get ready for the week ahead.

I finished folding my laundry.

Dinner was easy. I cooked hamburgers yesterday. We had leftovers, I baked sweet potatoes and acorn squash.

My paper planner is caught up for the week.

I budget for May 2022 is completed.

My teenager is going to day camp and school.
I need to add the start date to my planner.

I will also add the first day of school for 2022-2023.

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I started back listening to a variety of podcasts last year.

Certain podcasts I binge listen to a take breaks because the topics are heavy, triggering, emotional and a reminder of global chaos.

Most podcasts conduct interviews. I follow several individuals, BIPOC businesses, add movies/series to my watch list, and add books on my wishlist etc all featured in podcast interviews…

46 days into my vegetarian journey. My autoimmune illnessES have been very well behaved!!!

In hindsight, I wish I knew about certain things 20 years ago..

•Functional medicine vs Conventional.

•The importance of gut health.

•Parasitic cleanse.

•Ayurveda approach vs Conventional One-Size-Fits-All approach.

•Hydrotherapist- a massage therapist that specializes in lymphatic drainage, to gain more insight.

•How emotional trauma can cause a dysfunctional relationship with food.

•Why prescription drugs don’t always solve the root cause of your problem.

what nutrigenomics is, and how lifestyle factors affect genetic expression.

Importance of sleep hygiene and reducing stress.

•What integrative psychiatry is.

•How “genes load the gun, and lifestyle pulls the trigger”

•What genetic testing shows us and how we can use it for our health.

•What amino acid therapy is.

•The ways sleep influences our health.

•The importance of stress management.

•The problems associated with prescription drugs.

I took control of my health (transitioned to vegan) and it’s been a full circle of change except my vision. I don’t need recommendations about my vision.

This is not a sad post at all. In fact, I’m preparing (a lot of studying) to return to the workforce, after my son graduates high school (May 2024).

I’m excited but also nervous about ending my social security disability insurance benefits….fearful of my health taking a turn. I’m pacing myself and not going to overdo my spoons.

I’m returning to the tech industry.

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I’m new to autoimmune disorders. Recently diagnosed with Graves Disease and I wonder if it was is causing my sleep/mood/ anxiety and menstrual issues.

Starting eliminating bread and pasta from my diet and lowering my sodium intake.

I’m chronically hungry because of the disorder and think it was caught early. Start meds on Friday.

Quote:

Originally Posted by Stillhuman I’m new to autoimmune disorders. Recently diagnosed with Graves Disease and I wonder if it was is causing my sleep/mood/ anxiety and menstrual issues. Starting eliminating bread and pasta from my diet and lowering my sodium intake. I’m chronically hungry because of the disorder and think it was caught early. Start meds on Friday.

I was diagnosed with graves disease at 24. I was also hungry and couldn't keep enough calories in. What meds are you starting? I remember being put on propanolol a blood pressure med to keep my heart from beating too fast. Then I had the radio iodine and radiation. I't definitely messes up your mood and anxiety because your whole metabolic rate is high. I couldn't sleep much either. Hope you get good treatment with your doctors.

I am on a low dose methimazole. My heart and blood pressure have been barely affected and are in normal range. I currently take low dose mirtazipine and Seroquel which is helping me sleep and keep weight on.