Hidradenitis Suppurativa: One Really Messed Up Part of Me

**Photos in this post may make the squeamish squeamisher**

Why this post? I honestly am not sure. I’m not positive what I want to get out of it, but I’m compelled to write about it. I hope that maybe it will help people understand a bit what HS fighters deal with, I hope that maybe I’ll come to more of an acceptance of it myself, I hope that it doesn’t fall on deaf ears…but I hope you don’t treat me as a leper afterwords either. If you don’t want to see what I live with daily, you may not want to read any more. Disease is scary for a lot of people, I get it, it’s ok.

Let’s start with what it is NOT. It is NOT contagious. It is NOT known what causes it nor what could cure it. It is NOT fun, made up, or just a way to get out of things. It IS real, and it sucks. Hidradenitis suppurativa is a disorder of the terminal follicular epithelium in the apocrine gland–bearing skin. (thanks medscape). Doesn’t really say much..so let me try my best to help you understand…

hs faceHS is often called an invisible illness, because you can’t see how sick we are or feel, but I feel that is a misnomer because there are VERY visible scars and effects of this disease. On a good day, I have less but always present pain, no fever, and can function fairly normal as long as I don’t overdo it (right spoonies?). I get 10 of these days per month if I’m lucky, many times it is closer to 5. On a not so good day, I’m flairing in extreme pain, low fever (or high if something is infected), and it takes monumental strength to perform normal daily tasks. Oh, I also look like crap. I have worse pictures from worse days, but I didn’t want to completely scare you away. I’m really good at hiding the not so good days…if you’re someone I confide in, you’ve seen this a LOT.

HS is a disease that causes horrific sores that resemble boils in they way they look, but that is kind of where the resemblance stops. You feel them before you see them. As they form and tunnel into your body they affect nerves and your skin burns in such a way that it feels like you are being burned alive and because it is nerve involved pain it hurts everywhere, not just where a flair is happening. They fill with a fluid that is actually sterile, which is hard to believe, but if cultured they almost always come back negative except for bacteria that already lives on your skin normally. They rupture, they bleed, they seep, they hurt like h-e-double hockey sticks. If we can’t get them to heal they get infected, in a very very scary way. Untreated (and even treated) it can lead to life threatening sepsis. These pictures are of my arms. Sigh. I never ever thought I would share these with anyone, much less the world on an open blog (albeit a small following so I feel somewhat better about it). At least the photos are small…

HS arms

Not pretty, is it? This is pretty much my every day. They calm down a little sometimes, but more or less I have to figure out ways to make THIS as comfortable as possible. Range of motion diminishes not just from pain of active areas but also in the areas where scar tissue forms. Doctors don’t have a clue what to do to cure it. They say we won’t die (at least not directly from it), but in the last two months four people known to our support group have passed from the toll it took on their bodies. Treatments are experimented with, foods are eliminated, tests are ran, homeopathic remedies are tried, the list goes on and on but no one knows why sometimes people go into remission and then out of the blue it is back. Some people never go into remission. Is it hormonal? Maybe. Stress? for some. Food allergies/sensitivities? Eh..maybe? The point is is that every single person with it will have different triggers, and every single person is going to respond differently to “treatments” that may or may not work. Strong meds (think scary infusion cancer clinic type meds) are showing some promise for some people and putting a few into remission.

Where will it stop? I don’t know. Mainly I’m affected in the axillary (under my arms) and upper torso areas. But…anywhere apocrine glands exist, HS can exist. Yeah..think about that for a sec.. Surgery? Yes, surgery is an option. A maintenance option. It does not get rid of it, it is extremely painful and many times involves skin grafts, and it is also extremely expensive. Yet, most of us will at some point undergo some form, whether wide excision or smaller areas because the thought of going one more day without some form of relief, even temporary relief, is unbearable.

I have bad days, really, really bad dark days where I scream out to God wondering what purpose this possibly has in my life. I don’t have an answer. I take one day at a time, one treatment at a time, one (thousand) bandage at a time, one massive doctor bill at a time. I absolutely have pity party days, but I try my best to rejoice in the good things of each day, the blessings all around me, even when it isn’t a good day for me.

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If you’d like to support HS awareness and research, I always have a fundraiser open here, and click on the Open Parties tab.

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A Rock and a (Very) Hard Place

Many of us have felt at times that we were between a rock and a hard place. I find myself in such a place right now actually (and without many places to speak freely of the situation unfortunately). My heart, my calling, my desire all point me to an answer that seems unreachable, unfathomable, and unrealistic (check out that alliteration!). I’m finding myself insecure and anxious to the point it is impacting me (and my family) more than I care to admit.

What does the Bible have to say about this? Well, plenty actually. One particular passage comes to find frequently lately, and that is Philippians 4:6-9:

“Be careful for nothing; but in every thing by prayer and supplication with thanksgiving let your requests be made known unto God.

And the peace of God, which passeth all understanding, shall keep your hearts and minds through Christ Jesus.

Finally, brethren, whatsoever things are true, whatsoever things are honest, whatsoever things are just, whatsoever things are pure, whatsoever things are lovely, whatsoever things are of good report; if there be any virtue, and if there be any praise, think on these things.

Those things, which ye have both learned, and received, and heard, and seen in me, do: and the God of peace shall be with you.” KJV

AND THE PEACE OF GOD- did you catch that? All I have to do is make my request known to Him and His peace will be with me!! It’s definitely not a walk in the park for me, in fact, it is a constant conscious decision that I have to make to keep my heart and thoughts in the correct place, but when I do…. 🙂

 

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One of my munchkins, affectionately known as mini (not so mini…) and once in awhile as velcro (separation anxiety…). This is one of the most convicting photos I have; his eyes reach to my soul every time and remind me of what is truly important.

Bread! Chocolate! Mommy Diva!

Oh, my poor husband. The diet is in full swing and I’m ALWAYS super moody mommy diva until my mind/body/wallet decide to get on track. Avoiding bread is like cutting off my right arm. Avoiding chocolate is like cutting off the rest of my body. Yet, here I am doing both. Every time I start a diet/eating plan/way of life/insert whatever you call your jaded belief of a weight loss program here/etc, I get excited, over share, and then fail. It isn’t about willpower, it is just about life getting in front of, around, and carried away with. So, I am simply taking it one day at a time and one day, one day I will post before and after pics. I’m already planning the outfit.

Matthew 4:4 “But he answered and said, It is written, Man shall not live by bread alone, but by every word that proceedeth out of the mouth of God.” 

See that? Biblical endorsement for chucking the bread once in a while.

Stay strong.

Pray for my hubster’s moody mommy diva spectrometer to not break.