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Hi! My name is Amy. I was diagnosed with Hidradenitis Suppurativa in January 2013. I am not an expert when it comes to Hidradenitis Suppurativa; however, I have found a way to put my HS in remission. I must stress this is what has worked for me and I understand each individual is different. My hope is to share my experiences with you to see if I can help you begin the healing process and put your HS in remission! Click on My Hidradenitis Suppurativa Story to learn more.

Thursday, July 10, 2014

Struggles and Fear

"You have a skin disease called Hidradenitis Suppurativa and I'm sorry there is no cure".  WHAT??!!  No cure!!  I kept playing these words over and over again in my head.  As soon as I got home, I immediately starting searching for this word I couldn't even pronounce Hidradenitis Suppurativa.  I read blog after blog, post after post and became absolutely terrified.  I couldn't believe the horror stories that were out there.  Why me?  I remember getting in an Epson salt bath, because the dermatologist told me it would soothe my flare-up, and broke down crying.  So many thoughts scrambled through my head.  What am I going to do?  How am I going to live like this?  Will it turn out like those horror stories all over the internet?  Will I ever heal?  The questions kept coming! 

Reality hits and everything sinks in.  Yes, I have this horrible skin disease.  Yes, it makes me insecure.  Yes, it is painful, disgusting and unbearable.  I decide I have to take a stand and find a way to not let this thing control me!  It was only 2 days later when I stumbled upon a book that talked about how changing your diet can "cure" this disease.

If you are a Hidradenitis Suppurativa sufferer, there are several lifestyle changes that must be made.  The most important is your diet.  After reading this book and researching anti-inflammatory foods, I finally started to believe that there was hope for prevention.  While there is not a cure, there are several things that you can do to prevent future flare-ups.  I have been flare-up free for 1 1/2 years because of the lifestyle changes I have chosen.  I can't stress enough the importance of a diet (lifestyle) change. 

I know the antibiotic (Doxycycline) that the dermatologist prescribed me, along with the clindamycin gel, was helping my flare-up shrink down and become less and less painful.  However, I also started the recommendations from the eBook.  The day came when I took my last antibiotic pill.  I remember not wanting to stop the antibiotic because I was terrified that I would have another flare-up.  I continued to follow the anti-inflammatory diet recommendations.  I ate oatmeal with blueberries, veggies with hummus, apples, salads with my Sesame Garlic Dressing (posted July 7th), tried quinoa for the first time, and drank a lot of green tea.  Days passed and I didn't have another flare-up.  Months passed and I was flare-up free.  I can't even tell you how relieved I felt. 

Any lifestyle change is bound to affect the people that are close to you.  I had to change everything!  I had to change the recipes that I was cooking for my husband and I.  I had to stop eating candy!  I LOVED candy!  I was a sucker for Skittles, Good 'N Plenty, and Jelly Beans.  My lifestyle changed and therefore, the lifestyle of the people around me changed too.  I will say this.  Do not be afraid to talk to a therapist.  This saved my husband and I and helped us both understand how to deal with the daily changes. 

I still have cravings.  I remember a get together at a friends house around Halloween.  We were all playing a board game and the candy was spread out all over the table.  I could almost taste that mini twix and snickers bar.  I just wanted to eat a twix!  It is in these moments that I have to take a deep breath and ask myself, is it worth it?  To me, the pain and suffering is absolutely not!  In a way, I treat this like a food allergy.  I just tell myself, the people around me, the waitress at the restaurant that I have an allergy.  It makes it easier.

I still struggle and have fear that I will have another flare-up.  I have to remind myself though, that I am doing everything I possibly can to prevent this horrible disease!  My goal is to share the recipes that I have compiled with you.  I will also share tips and tricks that have worked for me along the way.  If you commit yourself to a lifestyle change, I promise you will see positive results!

3 comments:

  1. Can I ask you a question? I have my first HS outbreak on my inner groin. I'm 23 and it's giving me extreme anxiety. I have 2 marble sized ones and they are like under the skin and not yet to painful, but tender to touch. I have had them for about 2 weeks now and im wondering if they go away on their own or do I have to get them drained? I really really don't want to go that route but I'd like to know from your experience if they recede on their own with a healthy clean diet or if they have to indeed burst... :[ ugh. please help!

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    1. In my experience, I have never had my flare-up drained/lanced. I was put on an oral antibiotic, clindamycin gel/lotion (both prescribed by my dermatologist) and started my "clean" eating diet. Prior to being put on the antibiotic, I left it completely alone. I was told not to squeeze it or mess with it because this can cause it to spread. I took Epsom salt baths to relieve the pain and I think that caused it to drain a little (naturally) on its own. I still use the clindamycin gel/lotion every single day, along with my diet changes. If I feel a tender area (as if one is about to appear), I go into complete "detox" mode. I take turmeric, zinc, drink parsley tea, drink a lot of water, eat tons of green leafy veggies, and allow myself a relaxing evening in my Epsom salt bath. This has worked for me....I hope it does for you as well.

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  2. Oh it is such a hard change to stay away from sugar....I agree. I really like your ideas for detox mode, thank you!
    Michelle

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