clefchan

clefchan

Was tired of waiting so I did this

Added 2018-09-20 19:47:27 +0000 UTC

And well, this was to be expected >< ( my mouth temperature after I did the pictures TT, heart rate was 156 bmp just standing up, blood 9.6 /6 . ) ....But guess what? i'm still alive, yeay for daily crappy health! Pictures to come soon .
Oh and my flash light died after just a few shots ><. Won't ever buy cheap Chinese quality stuff ever.

Oh, and I have been having a rash for 2 weeks ( I'm thinking of it after Chris patti mentioned it in a comment) It looks like a flare up of something because it came with my swallowing problems and the fever and wasn't there before ( but I have been having this periodically ) . What a beautiful skin!...

And here is a picture of the things I got a biopsy for , yes it's gross and sometime it hurts:

Luckily there is something called photoshop XD

Was tired of waiting so I did this

Comments

I'm pretty sure it's an ebv reactivation. The nodules on my elbow and knee though are in my opinion linked to an underlying autoimmune condition. ( we will know soon enough)They are hard to the touch but skin, not bones, they are painfull when I lean on it but they grow very very slowly (took years for the first ones to grow ) I just good a bloody blood test for ebv but.... it's not a good one, it's not precise enough and so doesn't say if it's a reactivation...(why my doctor didn't ask something more accurate ? I don't know! arhh!!!so frutrating) I should be the one to prescribe my ownblood tests so I wouldn't loose so much time. I'm the one who asked for the biopsy because no doctor wanted to look at it.... The corticoids didn't improve anything.... Because it's not regular asthma...bloody hell I'm tired of these people... Its like I have to do the job myself to get it done. My principal doctor is satisfied with the fibromyalgia diagnostic so he won't be doing anything more for me. The other one, the lyme specialist checked for anti DNA antibodies and it was okay though. He also checked the HLA gene stuff and didn't look further. He's focusing on the terrain, bacteria and viruses but without any appropriate blood testing. But seeing my painful body response to the homeopathic treatment for EBV ( whis is called 2lxfs from labo life) I guess the test is not really necessary. But I must say the problem with my throat and swallowing ( with a cliking noise in the throat) is rather annoying. Especially when I feel like I'm gonna choke on my saliva. erh. And obvisouly pain and fever are not the best either but well I should be used to it by now.

2018-09-20 23:54:39 +0000 UTC

It’s good to see you up and moving. We’re all proud of that fighting spirit. 😊 If the rash came along with the other problems then it is not likely to be caused from lupus induced photosensitivity. Epstein Barr can present with a rash (that usually does not itch) as well as swollen lymph nodes (especially in the neck), a sore throat, difficulty swallowing, and a temperature of at least 38 degrees Celsius. So you check all those boxes. That is most likely all this is: an Epstein Barr reactivation. As the bumps are flesh toned they may very well be cysts (which may be hard or soft) or lipomas (which would be soft, move easily, and usually painless). Both of these usually grow relatively slow, however. They could also be rheumatoid arthritis nodules but they would be hard/firm (though they look to be about the right size, are in the right location, and are clustered appropriately). There are two other possibilities that come to mind so it is good they did a biopsy just in case. One, a liposarcoma, is far more likely if they’re growing fast and I don’t believe they usually cluster. The other which I don’t want to name would be more concerning if you have other swollen lymph nodes and the rash doesn’t look quite right, isn’t in the right location, and would likely itch. So that’s hopefully good news. My guess would be rheumatoid nodules (if you’ve never been or haven’t recently been tested for rheumatoid factor) but rash + skin nodule is a tough one. Hopefully the worst is past and every day you’ll get a little better. If not, I wonder why they haven’t given you IVIG yet. Corticoids will help keep your airways open (which is excellent!) but there seems to be just about zero evidence that it helps fight off Epstein Barr. Keep smiling. The world can use some lighting up.

2018-09-20 23:20:51 +0000 UTC

To say the truth , just after recording the video I went into my living room to take my pictures and thought about taking everything of because I was already so spent. But then I told myself I didn't spend 2 hours preparing and 3 days setting my background and recording for patreon for nothing. I told myself you were there behind me waiting for me too fight. So did I.

2018-09-20 22:37:55 +0000 UTC

Dear Clef, thank you for all the effort it must have taken to do the video clip for us. I hope you have lots of people around you who assure you of this, but, just in case, I will say that you are still beautiful. As for the maladies afflicting you -J'espère qu'ils s'en vont vite.

2018-09-20 22:12:55 +0000 UTC

Je sais plus trop quoi écrire, sans être naze et faire dans le cliché.. Bon courage, bla bla bla, tu as un courage de dingue.. bla bla bla.. Fuck a ces saloperies que tu traines depuis trop longtemps 🖕🏻🖕🏻🖕🏻 Elles insistent inutilement, c’est toi qui gagneras a la fin !! 💪🏼 Bordel de merde ! (Oui je suis vulgaire ! 😩), mais des fois ça fait du bien ! Grosses pensées pour toi ! 🙏🏻

2018-09-20 21:05:58 +0000 UTC

Hé Bah, courage Lolo ! Prends soin de toi et rétablie-toi vite !! Biz

2018-09-20 20:26:27 +0000 UTC

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