• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To register, simply click the Register button at the top right.

Burn

My daughter has been showing signs of what I have or mold illness or a combination of both. For sometime now. 5 drs past 10 days. The most ridiculous diagnosis reasons for throwing up 3-5 am while just wanting to sleep and feeling burning up with no fever, 2 abnormal thyroid tests but not off the charts enough to require medication. The list goes on and on.

Her GI dr called me and told me it’s all from constipation. Also, the GI dr asked me what a thyroid was when I asked her if gi was related to her hypothyroidism diagnosis earlier this year which was then revoked. … and I had to explain t3,t4 annd tsh testing to her… so yeah. Wish I could tell you guys I’m joking. Even though she goes every day or other day. Same things they’ve been saying for 6 years as my 2 year old had severe middle of night joint pain and sudden food intolerances right. At. The. Same. Time. I was plummeting. So of course I used all my energy back then to research and save her. I saw her invisibility to doctors. I saved her but I knew it was lurking in background. Waiting to strike again. I could feel and see it with some common things her and I had. But I couldn’t speak it or I would get in so much trouble from family. In 2015, I had her tested for Lyme with me. Positive. But my family wouldn’t accept results. Her pediatrician wouldn’t accept results. Said she would have seen signs of Lyme at her birth 😝 mmm. Ok.

But no one wanted to listen. And now, her body has been on fire. In a flare past month at least. So much school missed. Then she got the flu last week and my family left me with her all week to take care of. Which I have systems these days. I’m used to their negligence.

But on Friday morning my husband became angry she was still sick, at me, yes…. She had a 101 fever for days. Full body flu with trouble in chest etc and needed some breathing treatments…. And it was my fault.

Because this is what my family does. They blame life on me since they cannot face or handle their own emotions over the reality of the situation. They think she’s creating illnesses because her mother does too.

Witch hunt?

So, the insane GI dr told my husband she needs to be in school. She didn’t care about the 99.4 fever left or severe nausea and headaches vertigo my daughter was experiencing. She instructed us how to distract and dismiss my daughters cries when suffering. We are not to engage her and force her to school even if she’s in tears. Basically, I’m not allow to console my daughter if she shows suffering from an’ imaginary’ illness 🧐

Apparently this woman thinks we haven’t already tried to distract and even bribe my daughter at time to see if it shifts her symptoms with offers of a treat if she goes to school all week etc.

So I awoke half alive last Friday with very little hormones since I have many health issues to my mother and husband coming in here and ganging up on me to take my crying daughter from my arms. As we wake up. No warning or gentle wake up. Because the GI dr told them to do it they said.

My daughter looked at me with tears in her eyes saying how can you let them do this. I get so weak walking to the bathroom, etc how can I do a full day at school? I had no idea. I had no notice. I was so ‘good’ in their eyes all week. They did what they do.

They did this same stuff to me.

When I questioned their plan, I was told I’m a psychiatric case and basically like laying in bed for 6 years having people take care of me etc. etc. etc. and that my daughter is contagiously contracting my mental issues of wanting to lay in a bed.

Except my daughter loves gymnastics, horseback riding, roller skating, playing with friends etc. she’s very active normally and actually is saddened lately by how much she misses her friends and activities.

So they took her from me.

Told me I would get to see her when I use good behavior (which equals doing what they want me to do) after I let my mother know that she let me rot in this room for 6 years whilst she was a socialite raising donations for cancer patients etc but never me. Couldn’t be around me. Spread lies to people about me that I was a psych case and nothing truly wrong with me besides fatigue.

Yeah. They broke me.
So, a day later on Saturday, my husband told me if I cooperated with his list that I could see my daughter again. It was a ridiculous list. If she says her tummy hurts, I’m not allowed to acknowledge or react. I’m only allowed to listen to drs and have no opinion of her medical treatment. Etc. On and on. I brought up concerns but was told that I wouldn’t see her. So, I gave in and said yes to everything.

I lost my shit after they took her on Friday.

A dragon came out of me.

A dragon my husband will never forget.

And guess what happened? Mold started popping through in the bathroom. She couldn’t be in our bathroom without immediate allergic reaction that he saw. It all happened so quickly. All the things I’ve been begging these people to look into and check out and remediate….came to a huge head.

We now are getting a new roof tomorrow, a new bathroom next week and mold remediation.

All because I made phonecalls.

All because I was right all along.

Something wasn’t right. I have been telling them for 6 months I think she’s having a reaction to something in our bathroom. I was told I was crazy. No testing etc. and I’m too weak to be able to tackle all of this.

She’s in another doctor appointment right now. Getting breathing treatments. Because people are stupid and don’t listen to common sense. Everyone goes straight to everything is fine and psychiatric woes rule the world.

If people just listened, and actually tried to help us, we might not all be in this position.

Please, me/cfs activists and keyboard warriors from all around the world, remember this, you matter so much. You are making a difference and it takes a village to wake humanity up to this illness. Please don’t ever stop fighting for all of us. I’m broken this week. They broke me. This disease breaks me. But I know you guys are out there still fighting when people like myself barely can anymore. There are so many children that you are helping that have strange conditions. Thank you. Thank you for never giving up for any of us. Even when it’s too hard. And you want to.

I told my daughter when we got to hug again, this isn’t your forever and we are going to figure it out.

It’s so confusing to her because of all the games. She sees the games the doctors play. And if you tell them your symptoms like these, you will often be told it’s anxiety or nerves… and then these children start to lose faith in the system. She’s starting to not trust them despite how encouraging and supportive her father and I are before her appointments etc. So I have to keep telling her the doctors are good they just haven’t figured it out yet. She said if they are helpers snd good then why don’t they believe me? Why does dad and my grandparents not believe me? Why are you the only one that believes me mom? It’s really weird mom. Something isn’t right.

Smart girl.

I wonder if I should tell her about my blog one day 😉

In solidarity dear human community of beautiful beings. May you light shine bright, even when it’s darkest.

Comments

What school would allow a child to return with a measurable fever?

Thats the main way they'd keep us out of school: back in the day, every school, had a nurse and she checked you before you could come back.

I'm so sorry @Sunshine, I was only able to read part of this, and then I saw the sentence they took Her and this got me really upset.

so I'll have to return, with access to more composure. And in less than one hour I have to watch the Ten Month Old......

Rufous....

ps I read more sentences, now reading you found the mold.
 
There is a very large building, down the road from where I once lived.

A huge banner: toxic mold, we remove it from your home.

I simply chose to pretend that nothing wrong with me had to do with the dang mold problem that went on for the entire 17 years I lived in that place

I recently discovered: INSIDE THE TOILET TANK.

Here, I don't see much mold problem, but when I lifted the lid?

I"m trying to figure out how to get that cleaned up.....
 
Beware of the Dragon, when her child is taken from her.

-should not have to coach your child on how to avoid criminal abuse from the medical profession.

From her own parent, and her grandmother.

But these games, they are played and it seems we have to face them at a young age. I did. You did. Still are.
 
What school would allow a child to return with a measurable fever?

Thats the main way they'd keep us out of school: back in the day, every school, had a nurse and she checked you before you could come back.

I'm so sorry @Sunshine, I was only able to read part of this, and then I saw the sentence they took Her and this got me really upset.

so I'll have to return, with access to more composure. And in less than one hour I have to watch the Ten Month Old......

Rufous....

ps I read more sentences, now reading you found the mold.

Technically that’s not allowed. My point exactly. I personally asked GI dr about this snd she told me 99.4 is not a fever 🧐 oh and she had leukocytes and bacteria in urine. Just like me for years and years. And protein in urine. I was told none of it is a big deal!!! Like a bad dream you cannot navigate bc it truly makes zero sense. Although protein in urine can occur due to dehydration etc. why is is regularly occurring in my daughter? No one seems to care. And this is beyond shocking to me for a child.
 
There is a very large building, down the road from where I once lived.

A huge banner: toxic mold, we remove it from your home.

I simply chose to pretend that nothing wrong with me had to do with the dang mold problem that went on for the entire 17 years I lived in that place

I recently discovered: INSIDE THE TOILET TANK.

Here, I don't see much mold problem, but when I lifted the lid?

I"m trying to figure out how to get that cleaned up.....


Whaaaat???

Wowwww
 
Beware of the Dragon, when her child is taken from her.

-should not have to coach your child on how to avoid criminal abuse from the medical profession.

From her own parent, and her grandmother.

But these games, they are played and it seems we have to face them at a young age. I did. You did. Still are.

🗡️✨🙏💗✨🙏🐉
 
Oh, @sunshine44! It's heartbreaking to me how your family treats you and now your daughter.

Your daughter is fortunate to have a Momma Dragon like you.

Thank you dear zebra.

What hope.

Conflicted emotions now that I stood up for us.

I wish people could be more open minded …and compassionate ….and think maybe, possibly we didn’t just want to lay in a bed for years and years optionally. And maybe, possibly, it’s not so absurd to think a mother and daughter could share a microbiome.
 
Will you give us an update on your daughter once they do mold remediation? I'm so hoping that helps her to improve...maybe it will even help you too with your severity. I pray it will.
 
Will you give us an update on your daughter once they do mold remediation? I'm so hoping that helps her to improve...maybe it will even help you too with your severity. I pray it will.

I will.

To think I’ve been asking for this to happen for SO long. But no one would listen to me until it became a serious situation.

The very good news is her GI and other symptoms have been VASTLY improving whilst being in other family members houses past 5? Days. I forget what day we are on. So this is incredibly encouraging. She is at times having no GI symptoms snd that’s with a nasty chest bug. Absolutely incredible. Her pediatrician is keeping an eye on her chest bug. She is on albuterol treatments and was able to go to school today. They may add in an antibiotic tomorrow she said. The pediatrician knows nothing about mold but has referred us to an allergist for her. I scheduled her in with a specialist pediatrician that is familiar and versed in mold, pathogens and food allergies etc. My husband has agreed to take her January 4th. She is about an hour away.

Our bathroom is completely gutted. They found a good amount of mold in all subfloors and a slowly leaking pipe.

I have mold remediation coming out tomorrow and plumbers.

My room is plastic off with a commode. Fun times. But SO grateful it’s all happening!!!! Finally. And that my baby is getting this amount of relief.

No telling how this has been affecting me. Exactly. My husband took a at home house mold test in 2018 bc I begged him to but not much came back. Obviously it’s not that black and white and we did have issues. I have also ordered whole house testing next month by a professional.

Multiple layers to this.

Unfortunately my family and I are not on good terms right now after they wouldn’t listen to her and I, I finally broke. I cannot believe they would rather tell me this was all in her and I’s head than just address the actual issues.

So, yes, many things happening now. It’s like God came in after this awful situation and said no more. Because literally the mold instantly became intolerable for her this past week although obviously it’s been playing a role for longer than a week.
 
The very good news is her GI and other symptoms have been VASTLY improving whilst being in other family members houses past 5? Days. I forget what day we are on. So this is incredibly encouraging.

So, yes, many things happening now. It’s like God came in after this awful situation and said no more. Because literally the mold instantly became intolerable for her this past week although obviously it’s been playing a role for longer than a week.
I'm so glad.

How is her nasty chest bug doing? Is that starting to clear up too? I hope.

Edit: I still think of your daughter as "Apple Cheeks" from that picture you posted when she was younger. :)

(The one in this thread: https://forums.phoenixrising.me/blog-articles/id-take-care-of-you.2954/#comment-11252 - page up to see it.)
 
Last edited:

Blog entry information

Author
sunshine44
Read time
6 min read
Views
318
Comments
11
Last update

More entries in User Blogs

More entries from sunshine44