Autoimmune Diseases and Rare Diseases Check-In

I DONATED PLATELETS IN SEPTEMBER. I RECEIVED A LETTER FROM THE RED CROSS ABT MY WBC (WHITE BLOOD CELLS).

WHITE BLOOD CELLS ARE AN IMPORTANT PART OF YOUR IMMUNE SYSTEM, HELPING YOUR BODY TO FIGHT OFF DISEASES AND INFECTIONS. IF YOU HAVE TOO FEW WHITE BLOOD CELLS, YOU HAVE A CONDITION KNOWN AS LEUKOPENIA.

I’LL BE GOING TO A HEMATOLOGIST SPECIALIST TO TEST FOR “AUTOIMMUNE LEUKOPENIA.”

I SPOKE TO THE NURSELINE THROUGH MY HEALTH INSURANCE AND IT DID HELP.

A FEW MONTHS AGO, I WAS HAPPY ABT NOT HAVING ENDOMETRIOSIS.

STAYING BUSY HELPS ME NOT WORRY. I’M LOOKING FORWARD TO VOLUNTEERING WITH A LOCAL UNHOUSED OUTREACH PROGRAM THIS MONTH.

Sent from my iPhone using Tapatalk

Cocosurviving,

I've tested many times with low WBC. Sometimes they would go back up to the normal range, other times they wouldn't. My primary care doctors ignore the abnormalities in my blood exams. I don't know why they won't just address all of the results with me, so that they justify why more tests aren't being run to rule out other disorders. If I knew that they need to take an average of the other WBCs in order for them to determine coverage for scheduling another test, that would help. Or maybe they are just going by insurance guidelines, as opposed to what the patients really need in order to prevent conditions from worsening. How many people would be alive today if their conditions were caught earlier on? It's sad that our healthcare system is so broken.

Here's my abnormal labs from 10/29/21, which don't have any diagnoses yet, and my primary care physician only said that my vitamin D levels were very low and my thyroid labs were inconsistent, so I need to return for more thyroid tests. She claimed that the rest of my bloodwork looked "normal." Does this looks normal to you?

What my primary care responded to:

VITAMIN D, 25-OH TOTAL: 18 Low (s/b >30)
TSH: 6.41 High (s/b 0.34-5.60)

What my primary care physician failed to discuss):

NEUT %: 46.7 Low (s/b 50-76)
MONO %: 8.8 High (s/b 1-8)
LYMPH %: 42.0 High (s/b 20-40)
HEMOGLOBIN A1c Glycohemoglobin HbA 1c: 5.7 (s/b < 5.7%; 5.7-6.4% = Prediabetes)
GLUCOSE: 109 High (s/b 75-100)
eGFR Auto Chem 8 test: 59 (s/b >60 mL/min/1.73m^2)
CO2: 21.1 Low (s/b 22-32)

(((((Hugs)))).

I’ve struggled with these questions and still have a hard time understanding profit/red tape/policies over patients.

I have to take regular breaks and focus on simple self care to avoid/fight depression. Because it becomes very overwhelming.

Sent from my iPhone using Tapatalk

My labs were ignored for years by primary care providers. I was reading a newsletter from a national rare disease organization. It happened to mention the correlation and percentage of people with Chronic Urticaria and Hashimoto/thyroid disease.

This led me to obtain copies of my recent labs and request a referral to a endocrinologist.

The sad part is most endocrinologist don’t try to treat flare ups or symptoms from Hashimoto. All they do it judge everything based on labs.

My immunologist is from South Africa. He treats my Hashimoto, my two rare diseases and asthma.

I found a podcast that I really like, “Thyroid Answers Podcast.” I listen to it on Spotify.

The book I like is, “Why Do I Still Have Thyroid Symptoms? When My Lab Tests Are Normal: A Revolutionary Breakthrough in Understanding Hashimoto's Disease and Hypothyroidism
by Datis Kharrazian.”

Your local library likely has this book.

My teenage son has Hashimoto and Graves’ Disease. His endocrinologist and our immunologist believe that changing eating habits/avoiding gluten will not change, cure or improve Hashimoto.

Gluten and changing eating habits/avoiding certain foods are debatable among people with Hashimotos.

I recently moved. I’ll see if I can find my most current labs or see if I can pull them up on patient portal.

The American Thyroid Association (ATA) usually has good information.

Sent from my iPhone using Tapatalk

Many times I write in all caps, capitalize the first

letter of each word and use bullet points/number

sentences/space my sentences out….


Because my chronic illnesses impact my vision….

I sometimes misread e-mails because the font is

too small…


Some posts or articles, I won’t read if it’s long,

small font and the paragraphs are not spaced out.

I’ve sent e-mails asking people to enlarge the font.


I’m far from a language arts teacher, however two

weeks ago, I requested my son’s school principal

(has a doctorates degree) use punctuation

markers, bigger font and space her sentences out.

I can not focus and read 3-4 paragraphs of one

longgggg run on.

Sent from my iPhone using Tapatalk

Thank you for your replies, Cocosurviving!

I hope you are doing okay. Do you prefer that we write in all caps, for it to be easier for you to read? Or perhaps a size increase, like I'm doing here, might be helpful??

TRIGGER WARNING ⛔️ (Long post)
Crimes Against Individuals with Disabilities
•I Recently Spoke with an Elder Family Member Abt This Topic. It’s Still Weighing Heavy on My Mind.

Crimes of Opportunity
•Some People will “Befriend” Folx with Disabilities, Seeking to Gather Info with the Sole Intent to Rob a Person with Disabilities.

•These People Ask If You Receive SSI/SSDI.
•Ask Your Disabilities and What Medications You Take.
•Ask If You Use a Bank or SSA Direct Express Card.
•Suddenly Take an Interest in YOU.

TRIGGER WARNING ⛔️
•My Auntie’s Best Friend from Childhood, an Elder was Robbed and Murdered along with her Son.

•They Left a Check Cashing Place, was Followed Home by a Complete Stranger. Who Robbed Them, Beat Them and Attempting to Cover Up the Crime by Setting Their Residence on Fire.

•When I Experience Brain Fog from Medications, I DO NOT Divulge the TRUTH to Most People I Interact with. I DO NOT Care What People ASSUME When I Experience Brain Fog.

•I Blame Insomnia/Sleep Deprivation, Out of Concern Someone will Target Me with the Intent to Rob a Disabled Person.

•Befriending is NOT the Only Method. Acquaintances, Family Members, Friends, New Romantic Interest, Can Prey on Individuals with Disabilities.

•While Visiting My Grandma, a Local Pastor and Family Friend, Asked What I Received Disability for. I Told Him it’s Private. I Learned He’s a Pain Med Addict. I Told My Mama and Grandma to use Caution.

•One of My Sisters was “Love Bombed”, a New Romantic Interest Came Over to “Netflix and Chill.” She Fell Asleep, Woke Up, He was Gone and so was Her Prescription Meds.

•My auntie, who transitioned December 20th, 2020, was born with a rare disease called “Arthrogryposis Multiplex Congenita.” She was in a wheelchair her entire life. My auntie was robbed while in her WHEELCHAIR.

•Individuals with Arthrogryposis Multiplex Congenita require home healthcare for LIFE. This rare disease is NOT a DEVELOPMENT disability. It DOES impact joints, joint/bone development, range of motion and susceptibility to bone fractures.

•If You have One Chronic Illness, important to remember Others have multiple Chronic Illnesses. Although this Might Not Pertain to You, It Does Pertain to Others.

Sent from my iPhone using Tapatalk

“Why Is Everything About Race/Ethnicity?”

Because of the Lack of Cultural Inclusion and Tolerance.

I went to a Nutritionist Last Year and Did Not like the Experience.

I was Recently Referred to a Nutritionist Again. I was also Recommended Grief Counseling, Which I Declined.

I Did Not Schedule an Appointment with a Nutritionist Because None of the Nutritionist in My Network are BIPOC. It’s Counterproductive, Triggering and a Waste of Paying a Co-pay.

The Barriers and Reluctance: Our Cultures are Not the Same, Each Culture has Different Frameworks, Approaches, Beliefs and Values.

This Applies to Many Areas
•Grief/Loss/Coping with Grief/Loss
•Beauty Standards
•Weight Management
•Mental Illnesses/Therapy
•Dealing with Stress
•Health
The List Goes On.

•It’s Not Valid Giving a Narrative, That Resources and Services are Available but People Will Not Participate. There Are People Not Interested in Assimilation.

Healthcare Open Enrollment Got Me Like

Accepting Applications for Quality Private Health Insurance w/Excellent Coverage in Exchange for MONTHLY Spooning, Home Cooked Meals & a SEXLESS Marriage. #OpenEnrollment #SpoonieLife #Memes #Healthcare #ChronicIllnesses

Sent from my iPhone using Tapatalk

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

Sent from my iPhone using Tapatalk

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.

Sent from my iPad using Tapatalk

@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.

Sent from my iPhone using Tapatalk

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

Sent from my iPad using Tapatalk

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.

Sent from my iPhone using Tapatalk

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.

Sent from my iPad using Tapatalk