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Hidradenitis suppurativa
I would like to talk with anyone who has this disorder. I recently was diagnosed with this after having a cyst and uncontrolled blood sugars. Did not know I was "diabetic" until they called me back to the ER for a blood sugar of 680. Now I have horrible cysts that wont go away and are very embarrasing. Anyone out there who can help me understand and deal with this?
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@contentandwell - Do you have hearing aids/are you seeing an audiologist? There have been a LOT of improvements in those technologies in the past few years -- my mom has been on them for at least ten, and they're VASTLY improved since then. She just got a set of hearing aids that actually connects to her phone via bluetooth so it comes right to her ears to help her hear better. There's a TV booster as well that connects to her hearing aids so she can turn up the volume for herself but it goes directly to her hearing aids so the TV's not blasting. I think this is the brand she got: https://www.oticon.global/hearing-aid-users/hearing-aids/accessories/connectline. But I'd make an appointment with your audiologist if you're having problems, especially if you haven't been in a while. There's truly been huge improvements in the technology that should help. Good luck!
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1 Reaction@peabody88 Thanks for the suggestion, but yes I do have hearing aids, I started wearing them in 2004 I think. I have what I believe is the best that Oticon makes now, and my phone also streams right into my hearing aids, both for phone conversations, and for my music which I use when I do my water jogging -- my head is never near submersion. Unfortunately I lost something in the clarity in my hearing so unless something is clear, and preferably isolated I have a hard time. I also did purchase the "connect clip" recently. A person wears it and it's basically a microphone that goes right into my hearing aids. I use it in one of my water classes because that instructor does not go in the water and it makes all the difference. Her voice is high and that's my worst frequency, so now with that I can hear what she says. I used to have to just watch her and other people in the class to know what to do. It's also good in restaurants to hear my husband and I used it in the car when we were on vacation, to hear what my son was saying while I was in the back seat.
Losing clarity can be a problem that comes with age, but there is also some evidence that hearing problems can be caused or made worse by cirrhosis and/or the immunosuppressants.
On Facebook there is a private group for wearers of these Oticon hearing aids. It's been helpful with problems.
Thanks again, I appreciate your concern.
JK
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2 Reactions@contentandwell , what's the name of that Facebook group? I'll have to share that with my mom.
Glad you found something that seems to be helping, if not fully fixing it. And seeing the technology improvements in the past few years, I have no doubt in a few more it will be even better!
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1 Reaction@contentandwell None that don't cost an outrageous amount to go to and aren't covered by my insurance and I only know of one. I also know of a few that have gone to her and their treatments aren't helping at all. My dermatologist told me that it would require me to have my sweat glands removed and he said he would not perform that surgery because of the dangers it opened me up to. And then he wanted to put me back on the pill (post menopausal/husband had prostate cancer twice, surgery and radiation) ... can we say it would be the immaculate conception if I were to get pregnant ....... in order to do a new treatment and in researching that treatment and women in my age bracket, it was scary what was happening to these women in other organs as a result of the treatment so I decided I'd rather deal with a disease at least I know something about than to head into the unknown with poor results. 🙁
@peabody88 they really are always getting better, but unfortunately they are so costly! When I got these, almost 2 years ago I paid $6000 and supposedly they gave me a break on the price!
The name of the Facebook group is Oticon Opn Hearing Aids. It can definitely be helpful.
JK
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1 Reaction@autumnleaves I can understand your reluctance to take any of your current options. If the specialist had a better track record it might be worth the money to get relief. I sincerely hope some other, better options will open up for you.
Please let us know if you find anything that does help.
JK
@mbrittain can you please suggest me ur pa name and details as i live in kansas and i have hs on my vagina and i need this to be cured soo badly. Please help me
Hi @mamtaemily23,
I’m confident that @mbrittain will return; I also hope @midnight @sandig @drew1991 @msdodo987 @autumnleaves @andrewsta02 @amy75 and the others sharing here will return with some update as to how things are going. How are you coping at present, @mamtaemily23?
Midnight (@midnight) if you look at the posts above and read those written by me, you'll see that I've had this disease since puberty and was unaware of it till about 20 years ago when a OBGYN pointed out to me what it was and showed me in the book that I was a classic case of it. Read through my posts and if you have any questions, I'd be glad to talk to you about it. I've had every treatment that i know of out there and some might appear to give relief but it onlu comes back. I refuse to get surgery because my dermatologist refuses to start that process because it just leads to other surgeries. There is no cure if you have HS and not just adult acne, and no matter what is done, it comes back somewhere else. The best you can do is learn to deal with it unfortunately and there is an antibiotic cream I use that helps heal the sores and takes the pain away as best it can. I get the sores everywhere, and I mean everywhere. And the depression and pity parties just happen .... when you have this disease because it's so limiting. Send me a post with any questions and I'd be glad to tell you all that I've been through ... I'm 63 now and it's a constant battle.
I have them on my vagina as well and you can't even cover them when they happen. I live in North Carolina and all the specialists and my own wonderful family doctor can't fix it. It's an incurable disease and nothing that I've found over all my years takes it away and trust me I've tried everything under the sun that they proposed. Nothing cures it. I wish I could help you but have suffered with HS for over 45 years now and I'm here to listen or tell you something that kinda helps me deal with it and your family doctor can prescribe it. My heart goes out to you because I really do understand.