Posted , 10 users are following.
As a newly diagnosed person I struggle with what to tell people about this very personal issue.
I know I should not have shame or embarassment but I do because I am a very private person.
What do you tell people from serious to funny ( I am extremely sarcastic)....
??
0 likes, 22 replies
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susan43705 chris90369
Posted
unless you are intimately involved with someone, why tell them?
susan43705 chris90369
Posted
unless you are intimately involved with someone, why tell them?
chris90369 susan43705
Posted
That is a very valid point.
g22870 susan43705
Posted
Totally agree with your Susan43705. No one needs to know outside your intimate circle. The only ones who know about my situation are my doctors and my intimate friend.
susan43705 chris90369
Posted
Thank you.
heathmama chris90369
Posted
I end up telling people fairly often because I've made dietary changes as a result (no gluten or sugar) and people ask why. If I don't want to broach it I just say I've got skin issues, but I usually say I've got LS and when they ask what it is, I explain.
susan43705 chris90369
Posted
well, to each his own. I don't explain my dietary issues. I just say that, unless one is lactose intolerant, which I am, I never explain my situation. It is pretty gross. I do tell some of my closest friends my age because maybe they have the same issue. Turns out some do. Unless LS is outwardly noticeable and someone wants to know what's wrong, I don't feel the need to say anything to anyone. And even then, just that I have sensitive skin.
Good luck with your LS.
jane08222 chris90369
Posted
Nothing to be ashamed about. You did nothing to cause this. If you choose to tell no one, that is your choice. I shared it with my husband, best friend and my doctors. Most of my energy has gone in to accepting it, and dealing with it. We are all different. The way to a peaceful existence with it is figuring out what works for you, realizing there will be flare ups, etc.But all in all it is manageable and you can feel better.
Sending you a hug,
Jane
beverly52803 chris90369
Posted
Why would it come up unless you were discussing health issues with a close friend and trying to warn her of what could happen? If you feel the need to talk about it, that's up to you. You sound more open than private which is fine. Just be prepared for a lot of other people knowing about it. I prefer to discuss it here with others who have it and might have info on how they deal with it.
IMO it's doctors who should be discussing it at length with each other and their patients. We need more info and help than what's out there.
g22870 beverly52803
Posted
I agree with you Beverly, it is the doctors who misdiagnose this disease who need more training, who need to discuss this in length with each other and their patients. It is the medical profession who needs to be educated.
I went to my GP for 6 months with this and she kept telling me it was a yeast infection. I finally had to be firm with her and tell her I could not stand it anymore before she sent me to a specialist. She then turns around blaming me and says " why did you leave it so long?" Well, I have been to you 3 times and you said Yeast. The specialist knew what it was immediately and treated me properly. There was much damage before I finally started to heal. I am in remission and seldom have flare ups. I can now ride my bike, swim in pools both chlorinated and salt water and even have sex on a regular basis.
Telling my girlfriends, I am not so sure. Girlfriends tell others and I certainly do not want my whole circle to know about my condition. I am sure girlfriends would be empathetic to your face but will they keep this to themselves. I think mine may not. So therefore I prefer to keep it to myself, medical profession and my friend.
Everyone thinks differently so the choice is up to the person who has this chronic disease whether to discuss this with others and with whom.
beverly52803 g22870
Posted
g22, I just found something interesting on (where else?) the internet. In the US there is something called the Orphan Drug Act of 1983. It is a federal law that incentivizes biopharma companies to develop drugs for people with rare diseases. (Rare= affecting fewer than 200,000 Americans). As of 2018 730+ drugs have been approved by the FDA. So this makes me wonder how many Americans have LS. If doctors aren't sharing the information who is keeping track of this disease? Is there some sort of disease clearing house? As it isn't communicable, I'm not sure.
though ultimately I think we need to know what causes it. Western medicine may be satisfied with steroids though they are hardly a cure.
I will PM this to you in case this gets blocked. My last post about who to see for possible dietary help was.
g22870 beverly52803
Posted
Thank u for sharing!!
susan43705 beverly52803
Posted
hi, what course of treatment were u on that brought you to remission? and congratulations.
beverly52803 susan43705
Posted
susan, not sure if you meant to address that to me, but all I'm doing is using hormone cream (a small amount just about every night) and Triamcinolone steroid as needed. I wouldn't describe myself as in remission. I wasn't even aware that I had a problem till diagnosed and am more aware of strange sensations now. Everyone seems to speak of flare ups, I haven't experienced that, but have no doubt I will at some point. I'm on a mission to find an affordable functional medicine doctor who has experience with AI diseases to see if I can address this through diet and supplements.
beverly52803 susan43705
Posted
Alan, This blocking of my messages is getting ridiculous. There are such things as different forms of treatment. ALL have been mentioned before. Acupuncture, homeopathy, eastern medicine, chiropractic, etc. Is it taboo to mention functional medicine? There are doctors at the famous Cleveland Clinic who practice it. It involves tests, diet and supplements. Why do you keep blocking this? I am not suggesting people drink arsenic or some bizarre thing. Nancy and others mention very specific treatments in her posts (including dowsing) that are not blocked.
g22870 susan43705
Posted
I am on Protopic ( Tacrolimus oitment) My doctor said to soak every night in a sitz bath to soften the skin for 15 minutes and then apply the cream.I wash my underwear in baby detergent and rinse twice, I seldom wear jeans as I find the crotch rubs but I do wear them for short periods of time, go pantie less whenever possible. Sleep without panties at night.I might have to use Protopic now once or twice a month. I use Emu Oil or Vitamin E for moisturizing. Hope this helps Susan
susan43705 g22870
Posted
Hi, thanks for letting me know your course of treatment. We are all so different in what works and what doesn't. It's a battle and learning experience every day. Good luck with it all.
susan43705 beverly52803
Posted
Thank you for letting me know your treatment plan. When I have those strange sensations I know the LS is moving on to new georgraphy. Drives me insane.