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.Β 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.

New Fluff Love

Friends, I am in love. With new fluff! My Micro-man has been wearing some of the same cloth diapers from Little, meaning they went through Little, Mini, and now Micro! Listen, cloth diapers are the bomb when it comes to saving money, but having them go through THREE bums over six years is nothing short of a miracle. I was getting the itch (it is a true addiction I swear) to buy more colorful diaper fluff to replace some of the more worn pockets and covers, and well, finances are as tight as ever (right??) so I was having a hard time deciding to buy more of the same or to try a more affordable option that I had been giving an interested side-eye at for some time. I loved my more expensive diapers (note: expensive does not always mean good! Be careful and do your research before buying), settling for the uber cheap knock-offs (think one-way ticket from China through Ebay) was not happening, so I put myself on the waiting list to be notified when the affordable but quality diapers would be back in stock. Thankfully I didn’t have to wait too long as a good friend was downsizing her fluff collection after having potty trained her youngest and her stash was chock full of the ones I’ve been wanting to try ~score!!

I bought a handful off of her and put them to the test immediately. Love. LOVE. They are Diaper Rite, the in-house brand for Diaper Junction. “Diaper Rite products, brought to you by Diaper Junction,are an inexpensive choice for parents who want best quality cloth diapers at a reasonable price. Diaper Rite brand products are a great way to add to or build up your cloth diaper stash!”Β Β I couldn’t have said it better myself Diaper Junction! They are almost half the cost of other well known diapers and they ROCK. Word of advice, they sell out QUICK! Stash the cash, get on the waiting list if there is one, and be ready to pounce πŸ™‚

PS… The true test? Micro’s bum is happy, therefore Micro is happy

I just made you, and this is crazy… You fixed my floors, I love you baby.

Quick catch up- I had baby number 3, quit my job, and fell in love with my crazy life πŸ™‚ Now, the reason for this post… we have wood floors, and I love them…but you couldn’t tell it with the ever enlarging dry spots and surface scracthes . I’ve tried everything under the sun off the shelf only to be met with bitter disappointment soon after. I resorted to a quick steam mop (not supposed to hurt wood floors…right…) and *almost* resigned myself to the idea of just having someone come in and clean and refinish them.

ImageSee how pitiful?? Oh, yes that is sticker residue north of center. I have kids…three, did I mention that? With a direct sales business that occasionally brings people into our home and three birthdays coming up, I was in near tears over one more person having to see this. So instead of the usual Orange It-Might-Last-A-Week-Glow treatment I would apply the night (sometimes hours) before I expected someone over, I started Googling for answers. Low and behold I was not alone in my torment. In fact, an old school solution so simple it “could never work” kept showing up over and over. I CANNOT take credit for the recipe, it is has been around since the dark ages apparently.

  • 1 Mason Jar
  • 3/4 cup Oil
  • 1/4 cup Vinegar

Shake, shake, shake, shake your…oh never mind… Apply with a soft clean (duh) rag, let sit for a few minutes (depends on the damage) and buff. The wood will really soak it in.

That’s it, really! I used what I had on hand, which was soybean oil and apple cider vinegar, but the standard recipes say olive oil and white vinegar. The results were so immediate and so beautiful that I started to yell for the hubby to come in (who came running because he thought something was wrong) and he was flabbergasted as well. Check out the after ~

ImageYes, I left the sticker residue so you would believe that it was the same floor! Only a few more hundred square feet to go… Miracle working straight from Jesus floor restorer. A second coat with a toothbrush to really get in the crevices should satisfy my OCD quite nicely. Give it a shot!

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Note: Separating is totally normal (hello, oil and vinegar!) so recap and shake once in a while during use.

No foolin’ here – say CHEESE!

Ok, I know it has been a while, but this whole growing humans business is a tiresome trade πŸ™‚ You know my love for Scentsy, and one of their family brands (Velata) has added cheese to their fondue line!!! CHEESE! Oh so yummy… πŸ™‚ You can get your fondue fabulousness from Velata starting today!

Frugal Friday Finds

I’m always on the look out for frugal finds that we can actually use. Here are some that I’ve found lately that I think you would like too! If you have a fabulous frugal find, please leave a link in the comments πŸ™‚

The Honest Co.

The Honest Company offers free discovery kits of their diapers, wipes and home essentials for the cost of shipping ($5.95). Once your receive your pack(s) you have 7 days to cancel your membership or they will ship a monthly supply at regular cost. The Honest Company’s baby care and cleaning products are derived from natural and organic ingredients and their disposable diapers are absorbent, eco-friendly, and uber cute. We are cloth diaper people but I like keeping a few sposies on hand for some sicknesses and emergency backups.

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Nature Made VitaMelts

Target Sample Spot brings this fabulous little freebie. Nature Made’s VitaMelts are smooth melting and a tastier way to get your daily nutrients. Answer a short little questionnaire and your sample will be on it’s way to your door. On a side note, Target usually has great samples, you just have to watch for them and get them before they are gone!

All You Magazine

I love this magazine. I subscribe to this magazine (I am not some one who subscribes!). This magazine is so chock-full of high value coupons that you will wonder why you’ve never purchased it before. Now it is even better because you can get a $1.00 coupon for the Health & Wellness issue from coupons.com.

Scentsy Sale Month

This entire month is sale month for Scentsy! You can save on nearly everything in the catalog including any holiday items left (buy now for next Christmas!). AND they have a fabulous deal on solid perfumes (which I love – they last forever and are one of the few things that don’t irritate my skin).

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Free book!

Remember A Plain Scandal, the newest book by Amanda Flower that I blogged about (come on, it was only TWO posts ago…)? Well, Amanda has been so kind as to offer a copy to one of my readers!! You will love this series πŸ™‚

Win A Plain Scandal

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