NoeTellusom

Great to see another host family/exchange kid relationship continuing post-program. We hosted three Germans (but 10 students overall).

One of our German sons visits with us in the USA every other year, we'll see him in October! Other than this surgery, have you all been able to visit over the years?

Hope you BOTH recover well!

Or really, any social media refusing to.

You might try the American Legion's Order of the Silver Rose, it's dedicated to veterans (and their descendants) who have developed medical problems as the result of exposure to Agent Orange while serving in Vietnam.

My FIL served in Vietnam, both he and my husband (retired Navy NCO) were/are members.

http://tobaysvetsbook3.blogspot.com/

Yeah, but it's pretty damn clear that drinking Ivermectin horse dewormer and betadine is not a preventative, nor a cure for Covid. Not to mention, toxic to boot.

Leaving that sort of shit up on social media is literally going to kill people.

Certainly and thank you for asking, we appreciate when healthcare professionals take an interest in our rare diseases. <3

I have the stereotypical chronic dry eye. Feels like debris stuck in my eyes. Chronic dry mouth - I wake up with my tongue stuck to my teeth, despite waking up during the night to drink water. Speaking of, I drink 6 to 8 liters of water a day, so a nephrologist keeps an annual check on my kidneys to ensure they are handling things okay. Swallowing pills can be a real problem. Swallowing food can be a problem, too!

And I get these horrible throat spasms that feel like my voice box is being ripped out - a twisting, ripping sensation. It stops my breath and can cause me to grab on to things as I struggle to breathe through it. I'm told my face goes grey-white, lips blue, etc. It happens more frequently when my throat is dry - like during exercise or activity. I always used to wonder why my throat burned during exercise. Well, post-dx I know why. If it happens when I'm swallowing, which thankfully is REALLY rare - it can cause me to choke horribly.

Crushing fatigue is really par for the course, think flu-level fatigue during Flares. Painsomnia is common.

I spend a few days a week with my voice giving out. Sounds like I have laryngitis, honestly. Very rough, low timber voice that sounds like I'm getting a cold but I'm not. I cough a lot - a dry, itchy, unproductive cough particularly when I'm talking as my mouth dries out. I HATE talking on the phone because of this.

Sore joints, achiness, etc. Swollen glands are so typical for us. My skin is insanely dry, so I use a yogurt-style lotion and strangely, I do not create callouses, which means - I cannot grip things so I drop things a lot. My hand skin is so soft, things just slip out of my fingers. I wear textured compression gloves often to help with this.

I go through chapped lip products like crazy. My lips dry out all the time. I sometimes get breathing issues if I don't drink enough - it's so incredibly important to stay hydrated.

Fwiw, I do sleep with a cool mist humidifier. And my doctor prescribed a bi-pap machine to try to push MORE humidity into my system while sleeping. It helps, somewhat. I certainly feel it when I don't use it.

Then there's the strange loss of appetite that occurs somewhat chronically. I've lost 35 pounds since late October. I pretty much have to force myself to eat so I can take meds at this point.

Sjogren's is so much more than "body is dry, needs water".

Admittedly, it's often hard to separate what is from primary RA and secondary Sjogren's. Honestly, I don't really try to prescribe symptoms to one or the other, but RA tends to be pretty damn specific.

Hope this helps.