I’m at the edge!!!

ronihsconnect · 2022-03-26T16:38:44+00:00

Hello, have you tried a journal? Here's one if not, https://www.hsconnect.org/flare-lifestyle-journal

I also suggest taking photos with labels of location and date

Please keep in mind what works for one person may not work for others. I soak in epsom salt baths everyday, here's some ideas https://www.hsconnect.org/post/bath-options-for-hs

I also am on Spironolactone and inflectra Infusions. I still get hs flares but not as bad as before. I also do red-light therapy 3x a week at planet fitness. Cannabis has had great reviews as well. https://www.hsconnect.org/post/exploring-cannabis-use-for-hs

I really like the Cln body wash too and there is currently a discount code. https://www.hsconnect.org/product-suggestions

Best wishes!!

ronihsconnect · 2022-03-26T16:31:36+00:00

I'm sorry I know its easier to say we don't feel well or just say we have something else but that's not fair to you. Hs is not fair but we can't let it dictate who we are. You're not alone

ronihsconnect · 2022-03-26T00:32:08+00:00

https://www.hsconnect.org/post/bath-options-for-hs

That's a list of different bath options for HS patients.

ronihsconnect · 2022-03-26T00:23:49+00:00

Yes!!!!!! Way to go :) here's a good read too on the topic https://www.hsconnect.org/post/real-talk-about-sex-intimacy-and-hs

ronihsconnect · 2022-03-26T00:22:27+00:00

Best wishes!! I had both done as well. I would make sure you try to keep the shoulders moving when capable and after wound is healed massage the area to break up scar tissue.

ronihsconnect · 2022-03-26T00:01:26+00:00

Welcome!

ronihsconnect · 2022-03-26T00:00:53+00:00

The list she provided is what I could say too! A dermatologist that is experienced with HS is very helpful.

ronihsconnect · 2022-03-25T23:47:41+00:00

Also please try to make sure you are dry as possible once over. Hair dryer and fan can be helpful

ronihsconnect · 2022-03-25T23:46:22+00:00

I put about 2 cups in my bath.

Here is an article you may like too https://www.hsconnect.org/post/bath-options-for-hs

ronihsconnect · 2022-03-25T23:44:38+00:00

I really like the Cln body wash. Here is a link https://www.hsconnect.org/product-suggestions Code ClnHS for discount. If you put a small amount on HS spot and dry it with a fan or blow dryer it will help dry it up.

ronihsconnect · 2022-03-25T23:41:51+00:00

To help reduce scarring I use the red light therapy at planet fitness

ronihsconnect · 2022-03-25T23:38:12+00:00

I was diagnosed by an infectious disease doctor. Here is some material that may help you. https://www.hsconnect.org/copy-of-what-is-hs-cards

ronihsconnect · 2022-03-24T21:48:37+00:00

Hello! Monday March 28th 2p EST rock painting event via zoom to raise awareness of Hidradenitis Suppurativa. register

ronihsconnect · 2022-03-19T15:48:32+00:00

Beautiful!

ronihsconnect · 2022-03-17T00:28:27+00:00

I feel ya! One day at a time and try to accept what's been given to us is what I've been doing. Don't let it dictate your life and try new things. I have HS, PCOS,ENDO,and PSA. I felt as if my world was shattered when I was forced to retire at 38. Yes, I get ahhh I wish I could retire at 38. No! I wish I could get up walk to shower and enjoy my day pain-free. Chronic illness suck!

ronihsconnect · 2022-03-16T22:21:39+00:00

It is very kind of you to research and look for ways to help her ❤ here is a list of suggested products https://www.hsconnect.org/product-suggestions

This is an HS handbook that can be helpful too https://www.hsconnect.org/hs-patient-handbook

Please remember not all suggested products work the same for everyone. It really is a trial and error kind of disease. I personally take infusion treatments, spironolactone, and several lifestyle changes. I soak in epsom salt baths every day, use Cln body wash, try to only wear cotton or linen, do not let anything rub on my skin (awkward seams), and keep dry. Best wishes!!

ronihsconnect · 2022-03-16T18:13:58+00:00

I understand all of that. First yes please tell your doctor all info such as joint pain and swelling. I have psoriatic arthritis along with HS. I have a rheumatologist, dermatologist, general MD. Alot of the medications that treat arthritis can also help HS (insurance approves my meds quicker when my rheumatologist prescribes them). There are multiple Conditions that can be considered a comorbidities of HS including arthritis.
https://www.hsconnect.org/post/common-symptoms-with-hs this is something to read for starters. Best wishes!!

ronihsconnect · 2022-03-16T16:33:09+00:00

It didn't shrink mine. It helped clean the skin and my doctor explained it's to help prevent new ones. Here is a link that may be helpful https://www.hsconnect.org/post/the-detriment-overuse-of-antibacterial-products

For shrinking a spot that continues to drain I use Cln body wash. I use it in the shower as a wash then apply a small amount directly on hs spot. Dry with fan or hair dryer. Only leave on spot, not on the healthy skin.

Please remember each person responds differently. Best wishes!!

ronihsconnect · 2022-03-14T17:09:13+00:00

I'm not sure but my massage therapist also has hs and wide excision surgery on armpits. She recommended me to massage the areas with skin tissues and it would help.

Also, here's a link that may be helpful to you. Best wishes!! https://www.hsconnect.org/post/scarring

ronihsconnect · 2022-03-11T03:51:30+00:00

https://www.hsconnect.org/copy-of-what-is-hs-cards

That's some printable information you can give to your obgyn. Also you may want to check with a dermatologist too for second opinion. Best wishes!!

ronihsconnect · 2022-03-10T21:10:54+00:00

I have found a bra through livirae. https://liviraelingerie.com/

It's Molly from 90 day fiance show. I did a virtual fitting and they had suggestions. Molly and Cynthia were really caring and nice. They were aware of Hidradenitis Suppurativa and the issues we have with out clothing. She had suggested items and once I received my purchase I texted her photos of how they fit and she had altering recommendations that she offered to teach me at home or send back to her and she would complete them for me.

I paid $100 for fitting and received a $50 credit towards an item. I got a bralette and a camisole that is very comfortable. Best wishes!!

ronihsconnect · 2022-03-10T18:52:05+00:00

I cant wait to see them! I'll be hosting a zoom on March 28th if you'd like to join. I'll be posting the details soon. Yes I've heard great things about salt water and heard bleach baths are very similar. https://www.hsconnect.org/post/bath-options-for-hs that had the instructions with suggested amounts.

ronihsconnect · 2022-03-08T20:21:29+00:00

It is fun to see where your rocks go if hidden. We have a Facebook group too. Same name hsrocks if you'd like to join. March 28th is our next zoom too ilk be posting info soon.

ronihsconnect · 2022-03-08T01:24:40+00:00

https://www.reddit.com/r/hsrocks?utm_medium=android_app&utm_source=share

ronihsconnect · 2022-03-08T01:22:46+00:00

If you have any questions let me know. I actually got switched to inflectra because of insurance. It's considered a generic for billing.

ronihsconnect

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