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Hi, my name is starryangelfish961. I'm here because I want to learn more about having the disease for a long time and have neutropenia now

#MightyTogether #RheumatoidArthritis

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Update to Physician Heal Thyself


I found out that chicken soup can help me. While it does not increase white cells, it does slow down the neutrophils1 (the type of white blood cells2 I'm deficient in) keeping them in the body longer to do their work.

So, while I wait for the Sho-saiko-to herbs3 to work to increase neutrophil production4 in my bone marrow, I can use chicken soup to help the ones I do have in my body to their work more efficiently.

So, I bought 30 cans of chicken soup to eat one a day. I'm also sharing a tablespoon of the broth from each can with each of the cats; because, they have symptoms of having the Fusarium in their sinuses and they refuse to eat Fish Oil (which is the best thing to boost cat's immune systems). My cats are weirdos.

I'm also going to purchase some Thyme Essential Oil5 to use when I run out of Sho-saiko-to herbs. I'm hoping that, by the time I run out of the herbs, they will have done a good enough job to get me out of neutropenia and, then, I can kill the Fusarium with the help of the improved immune system.

Recovery from neutropenia is essential in treating Fusarium.6

Now, I have an improved plan!

1Chicken soup inhibits neutrophil chemotaxis in vitro


3Herbal medicine "sho-saiko-to" induces in vitro granulocyte colony-stimulating factor production on peripheral blood mononuclear cells


5Essential Oils and Their Natural Active Compounds Presenting Antifungal Properties Essential Oils and Their Natural Active Compounds Presenting...

6Current antifungal treatment of fusariosis

#DisseminatedFusariosis #Neutropenia #TreatmentResistantFungi #selfhelp

What are Neutrophils? What Can Cause High or Low Neutrophil Count

Neutrophils are a type of white blood cell that help your immune system fight infections and heal injuries.

Dying is NOT a Pissing Match

When reaching out to a cousin about my life-threatening illness, I was met with her text response, “Bigger problems. I have HIV”. I responded in a kindly manner offering moral support and received no further response. It's more than a week later. I know she is probably scared. So am I. However, I was quite annoyed with the one-up-manship; especially, because I know she is misinformed. Dying has never been a competition, as far as I know. Let's look at the most current scientific facts:

With the right treatment and care, people with HIV can live a normal lifespan.

Life expectancy for people living with HIV


Analyzing prognostic factors in 84 hematologic patients with invasive fusariosis, the 90-day probability of survival was 0% if patients had persistent neutropenia

Invasive Fusariosis in Patients with Hematologic Diseases

When someone reaches out to you about their life-threatening disease, get your facts straight before being unkind, even if you have your own life-threatening disease. Dying is NOT a pissing match.

#lifethreateningdisease #lifeexpectancystatistics #compassion #DeathOfFamilyScapegoat

Invasive Fusariosis in Patients with Hematologic Diseases

Fusarium species are filamentous fungi widely encountered in nature, and may cause invasive disease in patients with hematologic conditions. Patients at higher risk are those with acute leukemia receiving induction remission chemotherapy or allogeneic ...

#Neutropenia with Absolute lymphopaenia

How low must your white blood cell count be before you start getting injections to assist? I have Neutropenia with Absolute lymphopaenia but am not receiving any treatment for it and have not been asked to stop my immune suppressants. #Neutropenia #AutoimmuneDisease #Methotrexate



I usually have a temperature around the early 37. I am feeling very unwell, hot and cold, occasional body shakes, sneezing. My temperature has been between 36.5 - 36.9 the past few days. Now that isn't considered a low temperature but is from my normal. I know if I go to the Dr they'll just say it isn't low but I was wondering if anyone had experienced this? I feel a bit fluey but before when I had flu my temperature has become high. I don't have a cough so I don't think it's Covid, also I'm double vaccinated and am hardly near anyone. I have mild neutropenia and a mild heart condition. I also take medication for depression and anxiety.


Hello I am a student and am asking for survey takers for a new product of shot carrier if you could tak the survey it would be appreciated. #arthri #GrowthHormoneDeficiency

The product is for shots like HUMIRA and neutropenia that need refrigeration



Basic 1 color
Abstract image
Sleek stylish

What is most important to you in a shot carrier
Thermal installation


Why?!?  #Fibromyalgia #edsscreening #aorticrootdilation

I am in the midst of feeling extremely down and helpless. This past year 2019 was a hot mess family wise and physically. I found my chronic pain previously related to solely to fibromyalgia increasing. I was always told that fibro pain is not progressive and I started experiencing other symptoms. Since August I was told that I have unspecified neutropenia have dealt with a 30lb weight loss (and counting) in a matter of months, lack of appetite, pain, pain and more pain. I have had to have an endoscopy and a colonoscopy to see if there was anything else more "nefarious" going on. During the course of all of this and doing my own research, I brought to the attention of my doctor's that I would like to be screened for EDS hypermobility type, as I feel that the symptoms I have can be related to that not to mention that my brother and mother have also exhibited signs too. As I am in the midst of this screening process, I have had to go to opthamology and cardiology for an echocardiogram, which, incidentally found that I have aortic root and ascending aorta dilation. I don't see the specialist until February and my mind is going crazy because  I am worried that I can drop dead at any flipping moment!

#depressedandinpain #FibromyalgiaSucks #edsscreening #Brokenbody


A poem for Mya. #Neutropenia #RareDisease #MightyPoets

Mya Quick
Happy Birthday Poem

On this day,
15 years ago,
God gave you to me
To watch you grow.
I looked down at you
And your bright beaming eyes
And thanked God up above
For they were as blue as His skies.
And when you smiled
My heart melted with bliss
From the warmth of His love
I felt with one single kiss
Each and every year
I’ve watched you grow older
And when your body wasn’t well
I was reminded to rest faith on God’s shoulder.
I listen to your thoughts
Filled with love, hope, and life
God nudges me softly
And I forget all my strife.
So even though it’s your birthday
And it’s your day to get presents
You’ve given me more, Mya dear,
And that’s belief in Gods presence

See full photo

#Parenting #ChronicIllness #CPTSD #Neutropenia

It's that time of year again when the holidays are among us. Friends family and loved ones near and far gather to enjoy each other's company. It's supposed to be a time of giving, being thankful, forgiveness, and love.

For some reason this year I'm having a very hard time with the holidays. I want to enjoy the meaning, not the gifts, food, of decor. The real true reason. Nobody else is on board.

I'm not sure why, or how to even fix it. I feel emotionally, physically, spiritually, medically and mentally drained/numb/indifferent. I can't remember what normal is, or what I even did 5 minutes ago. I am a mom to 1 girl and step to 3 girls. My husband is zero support, he is in this with me so the less I can vent to him the better.

Am I in pain or is this what normal people feel, what IS normal?
Am I ruining my girls because I'm so spacey and forgetful?
Will my daughter be forever scarred because her most formidable years were full of uncertainty and sick absent mommy?
Am I am asshole now?
Am I selfish?
How do you even communicate anymore?
What TF is even real?
What was a dream?

This whole almost 7 years of illness has wrecked the calm, fun, easy-going person I was. It's made me a bitter, sad, broken enigma. And admittedly, I don't like the shell of a person I am, and that's hard for me to even type. I know other people agree.
I blocked out so much subconsciously when I was in the throws of sickness. It comes back to me now in emotional memories. I feel now what I should have processed then. Oops. 😵

I should be better by now!
I should be able to leave my house without the fears of getting sepsis from the damn common cold! I should be stronger, pain free, and my cognitive skills shouldn't make me second guess my choices.

There's that taboo word. "Should".
So I'll just change it to "wish" instead and keep being thankful to be alive. It's just hard sometimes, like ALL the time.

I like hiding the hard times from everyone, even my support system. But they're hard, and I don't know how to feel anymore. I just know it's NOT this way, and these feelings will pass. Contemplating surgeries and hospital stays probably isn't helping.

Why does the cold always make me feel so cold inside😣🥴😷.

See full photo

More Antibiotics, please?

#Sepsis #EhlersDanlosSyndrome #PosturalOrthostaticTachycardiaSyndrome

Just...a vent.

Never posted here before. Just am trying to get through another round of IV antibiotics (my gastroparesis and malabsorption make oral AXBs 'difficult' to manage to put it one way.

I feel like smacking the anthropomorphic versions of my chronic illness(es) and definitely smack this third episode of sepsis (this year.

This time around, the strep was pretty aggressive and my neutrophils plunged keeping me in hospital a bit longer thanks to neutropenia and needing reverse isolation.

I have this bad feeling I'm headed back down the road I went down 2 years ago (ended up on TPN & all that fun stuff.)

I don't tend to complain or vent much at home. So it feels good just to say it all. That I'm tired. That I'm scared. Yes, I'll feel cheerier soon but I need this moment.