Positive Progress

I had a question come through my blog recently asking me if changing my diet has worked for me, as well as, asking about my progress.  I thought this would be a great opportunity to share what I have been doing these past 3 years and 3 months!  First and foremost, I am so happy to report that since January 2013, when I changed my diet, I have not had another flare-up.  There have been times where I thought I may be getting a flare-up, but I literally follow a systematic protocol.

Read my post Uh-Oh flare-up to see my protocol.

I hear a lot of you saying that you feel discouraged and have lost hope, but I am here to tell you that changing my diet has truly changed my life and I believe it can change yours too!  You all know how painful Hidradenitis Suppurativa is and how debilitating it can be.  If you have not already, I personally want to encourage you to try to change your diet and see if it works for you.  Just keep your head up and don't give up if you have set backs!

In several posts, I have discussed my diet, but basically, I try to avoid anything with added sugars and eat as natural as possible (no artificial flavors or preservatives).  I stay away from "whites" such as, white flour (I use brown rice flour), white rice (I use brown rice or quinoa), and white pastas (I use 100% whole wheat pasta).  It is amazing all the substitutes you can find for recipes when you start to explore.

I am also a big believer in my clindamycin gel that I use every morning (under my armpits) prior to putting on deodorant.  I would strongly recommend you talk with your dermatologist and see if this is an option for you.  I use this as a preventive measure.

I live my life as normal as possible!  I never forget that I have Hidradenitis Suppurativa; however, it does not consume me any longer!  I have taken control of this nasty disease and I hope my words and encouragement will help you do the same!

My birthday "cake" this year....a Papaya!  Delicious!

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!

My Hidradenitis Suppurativa Story

I was diagnosed with Hidradenitis Suppurativa in January 2013.  My first flare-up was under my right armpit.  I went to the dermatologist thinking it was a boil that could simply be lanced.  I was devastated when the dermatologist told me I had a non-curable skin disease.  He immediately put me on antibiotics and told me that whenever I had a flare-up, I would be put on another round of antibiotics.  Growing up with my mom as a nurse, I knew that repeated exposure to antibiotics would eventually cause antibiotic resistance.  Depending on antibiotics the rest of my life and possibly becoming antibiotic resistant was not an option!  Not to mention, the dermatologist also wanted to put me on Spironolactone; however, after I did my research I decided against this as well.  Feeling completely hopeless, I decided to get a second opinion.  Sure enough, I was diagnosed again with Hidradenitis Suppurativa.  I made it very clear that taking antibiotics orally the rest of my life was not an option.  So, my dermatologist gave me a prescription for a clindamycin gel.  I was instructed to put this on the area of infection twice a day.  Once the area healed, I was told to continue using the clindamycin gel on a daily basis as a preventive measure.  I was also instructed to use a body wash with 5% benzoyl peroxide.  It took about two weeks for the area to heal with the use of my oral antibiotic, the clindamycin gel and the benzoyl peroxide.

After experiencing the pain and many different emotions from my Hidradenitis flare-up, I started doing my own research.  Hearing that there was no cure, all I wanted to do was find some sort of preventive measure!
The most frustrating part about being diagnosed with Hidradenitis Suppurativa was trying to understand what causes this disease.  I was told that genetics, cigarette smoking and excessive weight all played a role.  Ironically, to my knowledge, I am the first person in my family to be diagnosed, I never smoked a cigarette a day in my life and I do not carry excessive weight.  So what caused this?  The only way I could attempt to make sense out of this was in one word......INFLAMMATION!

Inflammation occurs as our body's attempt to protect us.  If there is something harmful in our body, the body responds by trying to remove it.  Inflammation is simply part of our body's immune response.  In my mind, it made perfect sense to figure out what my body was trying to get rid of.  I am sure you have all heard the saying 'you are what you eat'.  Two days after I was diagnosed I stumbled upon the ebook Fast Hidradenitis Suppurativa Cure by Therese Wilson, which changed my life!  I decided in that moment that I was going to try to change my diet and see if it made a difference.  For me, it did.  I can happily say that I have not had a flare-up for 1 1/2 years.  I try to focus on anti-inflammatory foods and foods that boost your immune system.

Bottom line, there are certain foods which cause inflammation that you should completely avoid.  To name a few, you should avoid refined sugar, processed foods, fried foods, and preservatives.  There are also foods that are considered anti-inflammatory.  These are the foods I focus on such as garlic, nuts, beans, salmon and spinach.

The most frustrating part of Hidradenitis Suppurativa is finding out what works for one sufferer does not necessarily work for another.  For me, changing my diet has made all the difference in the world.  So, I have compiled several recipes which I consider to be my Hidradenitis Superfoods.  My plan is to post the entire book of recipes; however, I am still working on it.  In the meantime, I will post a few recipes for you to try and tips/tricks that have helped my Hidradenitis Suppurativa.  Who knows, maybe the things that have helped me will help you too!

Please join me through this healing journey!