Blessed Anyways

By Marlena

1 min read

My name is Marlena... I have suffered from this for almost 28 years now... I have had MRSA a few times because of this nasty disorder. I have tunneling everywhere. I have had over 75 to 100 boils lanced and have had 2 major surgeries due to how big and infected they were. I have soaked in bleach water, vinegar water. I have had my fair share of antibiotics and just have been in so much pain and showing doctors several locations on my body - it gets very embarrassing.

Resilient despite all the challenges

I have a hard time daily with more than I would like to say. I will be starting Humira injections soon. I am still so embarrassed to be intimate with my husband due to my scars, and I feel uncomfortable with myself sometimes... I am just happy that I discovered this by myself reading up on chronic boils... I am blessed to be in a group that cares and, unfortunately, understands what I am going through, as we all are going through. Thank you for letting me vent.

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Jasmine IVANNA Espy Member
<inline-mention username="Marlena" user-id="4134843"/> Thank you so much for being vulnerable enough to tell your story after 28 years. I can only imagine the battles you've had to overcome having 75 to 100 boils lanced. This disease isn't easy, but reading stories like yours provides more hope than you know. Every day we get up and make a choice to go out here is a day worth celebrating. I send my love to you as you continue navigating this journey!
Rebecca Quinn Member
Hi <inline-mention username="Marlena" user-id="4134843"/> fellow HS warrior here & I just want to say thank you for sharing your story. 💜 I am so sorry you’re suffering too. I don’t have any huge words of wisdom but I just want to say you are never alone & I am so glad you can find some comfort in this community. I too would be lost without it! Sending love & hugs! - Rebecca 💞
1. Marlena Member
 <inline-mention username="Rebecca Quinn" user-id="4174873"/> Thank you for your kind words and thoughts. We do have a lot of issues with HS. I am trying to get a handle on this issue.. We must fight everyday..
Tia Ivy Moderator
Hello <inline-mention username="Marlena" user-id="4134843"/>, I applaud you for your honesty and bravery! Thank you for sharing your voice. Many healing vibes to you, HS Warrior 💜
1. Marlena Member
 <inline-mention username="Tia Ivy" user-id="4164648"/> .. Thank you.. I really appreciate your kind words.. We are all warriors from this crazy H.S. issue .. I am truly sorry that we all are dealing with the pain and emotional and physical damage this causes.. Sending love to all
Glitterdeb75 Member
I've had HS for more years than I can remember. 30+ years. I have driven school bus and semis with the cysts. No one knew what it was when I first got them. I was even diagnosed with a veneral disease because of where they were. But it wasn't that at all. Finally I went to a dermatologist and she knew right away what I had. I was put on a long term antibiotics and also Humeria for several years. It slowed things down but I still had breakouts. I would get up to 6 cysts on both legs in my groin area. Very painful and nasty. I finally had surgery on both my legs. The surgery didn't hurt as bad as the cysts did. My dermatologist wanted to put me on meds that would help block them from breaking out in other places, which I was told would happen. But my caregiver at the time, my sister in law, didn't think I needed the meds so I didn't take them because she refused to give them to me. She kept all my meds in her room. I am now living on my own. I'm getting breakouts again and I am taking the meds to help keep them in remission. So far it's working. I wouldn't wish this disease on my worst enemy. It's devastating and embarrassing. 
1. Marlena Member
 <inline-mention username="Glitterdeb75" user-id="4166008"/>.. I am so sorry that you have to go thru this as well. HS. Is a horrible disease I fight everyday to keep myself from going crazy.. I don't feel like doing much day to day due to my knee issues and diabetes and HS for years.. I live with my family and they have no clue of what I feel like.. I try and explain why I feel so bad and don't want to move . I am alergic to many of the meds to treat this issue .. I am starting humira this week.. I am a little nervous but I need to try something that will help pain meds and antibiotics are not doing the job anymore.. I am sending you a big hug and lots of prayers.. 
2. Liliana Member
 <inline-mention username="Glitterdeb75" user-id="4166008"/> what type of meds are you taking to put HS under remission please?
Selina Ferragamo Member
Hi <inline-mention username="Marlena" user-id="4134843"/>! I'm sending you so much love and I wish so badly I could hug you right now! You are so strong and resilient for dealing with this cruel disease and thank you so much for sharing your story. You are an absolute Warrior and please never forget that!
1. Marlena Member
Cooper Member
Thank you so much for sharing your story Marlena <3 I will be starting Humira injections soon too! Always here to lend a listening ear and a shoulder to cry on.
Rachel DiStefano Community Admin
Hi <inline-mention username="Marlena" user-id="4134843"/> - Ugh, 28 years... I just want to give you the biggest hug. I hope others read this and are just as inspired by your resilience as I am. Thanks for sharing your story with us and helping others feel a little less alone. 💜 Please keep us updated about how you are doing with your Humira injections. -Rachel (Team Member)
1. Marlena Member
 <inline-mention username="Rachel DiStefano" user-id="2400587"/>. You are very welcome.. I have been fighting this for years and it is a battle. Don't like to let things knock me down . And Thank you for your support. I am sorry that you and all of us with HS have to deal with this..