XaiJu
clefchan
clefchan

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Just a (blurry ) picture...

To tell you I'm not forgetting you're here waiting for an update , my dear Patrons.


I'm still struggling with my throat and breathing problem ( it has gotten slightly better though, especially if I stay warm) and with that injury in my stomach that woken up the pain I previously had in my right side for more than one year (and that had finally gone away just to come back stronger).

I saw an ENT  ( ORLfor french people) but after 5 min examination he just told me he didn't know what my problem was , that I should see a lung specialist because my problem goes 1 inch below his area of expertise  even though my throat and nose are stuffy and just gave me more anti inflammatory meds which are doing NOTHING.... . ( I hate modern medicine really!)

So for now I'm just waiting for my next appointment and for the pain in my left side to sooth. (and I have trouble to digest any little food I 'm still able to eat, once more....)

I want to do things but I can't find the courage and the energy to achieve anything.  I have 3 photo shoots planned but can't find the strength to install my background and take the pictures, I'm sorry. I'm trying to put myself together and DO something despite the pain and lack of energy, it didn't stop me before !

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Lately I watched the New Chilling adventures of Sabrina on Netflix and I liked it. So since I need motivation I decided I would cosplay her.

I did a quick makeup test with my old C18 wig and a dress I had in my closet and I think it looks promising so I'll probably make the dress once I find my motivation back .


See you soon and take care.


Clef












Just a (blurry ) picture...

Comments

oh and I believe it's not rheumatoid arthritis either. Neither are my 2 doctors. I don't have inflammatory markers, autoimmune antibodies are absent. My articulations are perfectly fine despite the pain times to times, no pet scan or IMR could see something that looked like rheumatoid arthritis ( which diminished a lot since I'm taking LDN). I don't have any swelling or even any stiffness in my limbs at night or in the morning. But well. I'm going to see what's come next with the lung specialist and I'll ask about a rheumarologist anyway. so we could definitely put inflammatory disease aside.

The single biggest indictment of modern medicine is undoubtedly its compartmentalized approach. A doctor knows his specialty...and that's it. No one treats the whole body anymore (a holistic approach) so no one ever connects the dots if the patient doesn't. If you could find a diagnostician, that would be your best bet for an eventual answer. (Or a rheumatologist - see below). That said, the leading candidate remains rheumatoid arthritis. The swollen and painful joints, the chronic fatigue, stiffness, the elbow nodules (big clue). Even the breathing issues could easily be either (or both) bronchiectasis or interstitial lung disease which are common RA complications. These are two possibilities to mention to your pulmonologist or next specialist. But there is one other oddity which I just happened to notice in one of your pictures above which is a significant diagnostic clue. Your big toes appear to be bent inwards (and others possibly curled). The picture is singular so it might just be an illusion but if it isn't and your toes are bowed inward or downward a bit then that is another common symptom of RA. (A negative test for the rheumatoid factor does not necessarily mean you don't have RA as there is a seronegative form of RA). All that said...sarcoidosis could feasibly fit (though not as well). And then there's the digestive issues. If we assume they are connected we land most likely (considering everything else) on scleroderma. But this can be likely ruled out if you don't have hardened or tightened patches of skin (usually on the torso or limbs). As always with autoimmune disorders, they share a number of effects in common. Either way, you need to see a rheumatologist. A good one. It might seriously be time to consider that it's not just lyme disease. When nothing seems to be working, question all your assumptions... Is there nothing that can be done in France to speed up the process of getting appointments? You seem to be eternally waiting for the next step. :-( Maybe a specialist elsewhere could help... In the meantime, keep fighting and keep believing. You have more courage than the world has any right to have asked you to need. You're not about to run out now. :-) You have a lot left to do and someday soon you will be able to do it.

Conversely, we're not forgetting about you, thinking of you and wishing you well. Your Sabrina looks amazingly close for being somewhat "thrown together". I think you are exceptional in what you do and incredible given the circumstances in which you achieve so much. I believe in you - allow yourself the time to rest and the energy will come back, I do not believe you have it in you to give in so, sorry, you are going to have to keep fighting. I have faith it will improve. Best wishes Richard

Surtout toi prends soin de toi ! Et j’espère un photoshoot en Sabrina j’étais déjà conquis !


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