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ninjafaery

I just Am
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Hugs to chemgal, because you must be hella frightened.

Ninja, go looking on Facebook for a "Name of Community Being Neighbourly". Ours is called "Barrie and Area Being Neighbourly". That's where you might find a neighbour with a larger vehicle happy to help you move something for free or price of gas. I help the odd person if the request fits my schedule, etc.

Mrs. A., I like your co-workers sense of humour...
I've been flooded with offers of help! At least 2! :giggle: Squeaky wheel!
 

Luce NDs

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Thanks all, I am reading even when not responding.
I'm having trouble. I'm not sleeping well but am of course still really fatigued. I'm forgetting things constantly.
Yet I feel like I am responsible for so much of my care. This was only caught because I caught it and if I had double checked all my results in the past may have caught it years earlier. I can't trust my doctors. Even with the biopsy I wasn't asked about what needed to be done, I immediately had to go hey, I need extra meds in order to have that done safely.

I feel like if I'm not on, 100% all the time as a patient my care gets mishandled. I don't know how to be on that well right now.
ChemGal ... I sympathize with you on medical professionals. I have had disastrous experiences with them ... along with engineers, lawyers, etc.

I was told when in significant pain ... that I was not having pain ... that it was all in my head! Then I worked with engineers that were stump numb. Then I have family that say I didn't experience such things ... like professional theologians telling me I lie about my experiences with my kin from Scandinavia ... and some even telling me I am going to hell. Hell appears to me an abstract thing ... absolute believers do not believe their mind (an abstract) will have an effect on them in coming time (defined in the dictionary as anon)!

One can see how Chansen comes to his resolutions about absolute folk!
 

ChemGal

One with keen eye
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Saw my GP. She basically really thinks I have cancer that started elsewhere and went to my liver. She is confused based on my CBC tests, weight, etc. though. None of that indicates cancer.
I have had various imaging done for different things, nothing with that indicated cancer until this ultrasound.
 

Mendalla

Eastern Lowland Gorilla
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Medical mysteries are the worst kind of mysteries. Hope a biopsy and further investigations clears things up. You seem to be good at taking control of this health stuff anyhow, which will serve you well in this situation. Take care. We'll be thinking/praying/sending good vibes around here.
 

Northwind

Still knitting. Walking the path to health.
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I thought it was bad when I initially was diagnosed in February. I can only imagine your fear and angst @ChemGal I hope you can work with your GP and other medical professionals to find the best solutions for you. Cancer suckeths mightily. :mad:
 

KayTheCurler

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Chengal - in your shoes I would be wishing for that guy on the TV show Dr. House was it? He just never seemed to give up on getting the right diagnosis and treatment plan. I wish you had such a person in your life. Is there a doctor somewhere that really understands HAE that could be your 'go to person'?
 

Carolla

wondering & wandering
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Saw my GP. She basically really thinks I have cancer that started elsewhere and went to my liver. She is confused based on my CBC tests, weight, etc. though. None of that indicates cancer.
I have had various imaging done for different things, nothing with that indicated cancer until this ultrasound.
I think the GP is possibly reacting to the word "metastatic" in ultrasound report. But the person reading the ultrasound would NOT necessarily have knowledge or even awareness of your complex HAE history - would just be reading the ultrasound in the usual way & reporting on typical and possible findings. But WE all know your body is not 'typical', and as you say you have not had any other indicators of cancer. So personally, I think it's important, although very very difficult, to not get wrapped up in that narrative until you have more certain studies done that DO take into consideration your complex and rare genetic condition. Very frightening in its possibilities, but it's also possible that cancer is not the end diagnosis. Just saying.

I'm truly hoping you can get some rest, breathe and find some peace until such time as the diagnosis is clarified. Sending light & love to you this night.
 

ChemGal

One with keen eye
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I think the GP is possibly reacting to the word "metastatic" in ultrasound report. But the person reading the ultrasound would NOT necessarily have knowledge or even awareness of your complex HAE history - would just be reading the ultrasound in the usual way & reporting on typical and possible findings. But WE all know your body is not 'typical', and as you say you have not had any other indicators of cancer. So personally, I think it's important, although very very difficult, to not get wrapped up in that narrative until you have more certain studies done that DO take into consideration your complex and rare genetic condition. Very frightening in its possibilities, but it's also possible that cancer is not the end diagnosis. Just saying.

I'm truly hoping you can get some rest, breathe and find some peace until such time as the diagnosis is clarified. Sending light & love to you this night.
I have confirmation HAE has nothing to do with any of the liver stuff.
 

ChemGal

One with keen eye
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Chengal - in your shoes I would be wishing for that guy on the TV show Dr. House was it? He just never seemed to give up on getting the right diagnosis and treatment plan. I wish you had such a person in your life. Is there a doctor somewhere that really understands HAE that could be your 'go to person'?
That's my hematologist, super busy guy. He can't really be my go-to. My nurse is my go-to for any HAE related questions now and she will get info from my hematologist as needed.
 

Northwind

Still knitting. Walking the path to health.
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I'm glad and I hope they are support for you @ChemGal. There's times when we need our parents. This is one of those I'm sure. ((((((((((ChemGal))))))))))
 

BetteTheRed

Resident Heretic
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More hugs for Chemgal, and serious approval for Northwind's colouring book.

Damnation, but the awful challenges thrown at us by Life.
 

ChemGal

One with keen eye
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I'm glad and I hope they are support for you @ChemGal. There's times when we need our parents. This is one of those I'm sure. ((((((((((ChemGal))))))))))
It's moreso cuz my nephew's birthday is this weekend, but my Mom came up prepared to stay in case. I don't think I want here to be with me quite yet, just being here while Chemguy is working, although depending on the roads with the weather we're getting my Dad might be flying home so he can get to work and my Mom waiting it out.
 

ChemGal

One with keen eye
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Not liking how much weight I have lost in the last month. Not that it's an unhealthy amount to lose, and I can certainly afford to lose more too. But when I was feeling relatively well with energy I was trying - although not making serious changes, I used to just hope that when feeling well doing more & not feeling the need to eat a ton - it wouldn't come off. Now it's coming off when I'm not trying to at all.
 

Jae

Sensing Feeler
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Have re-started intermittent fasting again today. It's something I began earlier this year. I go on the 5:2 plan.
 

Luce NDs

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Take your time at fasting so ... you won;t be too quick at spitting out opinionated things ... it is one of the odd things god gave imaginary souls to chuckle about ... all over kind of chuckling ... like a turbulent kettle ... Shaw spoke of it! Resembles life ...
 

ChemGal

One with keen eye
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I trust your doctors know that you're losing weight @ChemGal

Here's hoping it's merely stress. :whistle:
No, at first it wasn't much, then I weighed myself yesterday and saw just how much more it was. It's just stress though, this is new. Not eating much, not sleeping. I think fairly typical stuff.

Even if it is more than stress (I was feeling nauseated on and off starting this Sept a fair bit) it's only been since going through a bunch of 'likely' suggested diagnoses and the testing for them that I lost any weight, so even a doctor wouldn't be able to say it is more than stress at this point.
 
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