Up all night wonderin' what to do.

So I posted earlier but now I find myself posting again. It's 12:30am and I've been trying to go to sleep since 10. Usually when I can't sleep I can turn on the TV and it will talk me to sleep but tonight I accidently pulled the cable cord loose and the TV is too heavy and bulky / awkward for me to pull it out to reconnect it. I considered waking Ryan to help me...Nah, I'll be nice and let him sleep. He fell asleep on the couch in front of the TV downstairs.

It's hot! I said that in the earlier post. I seriously want to turn the AC back on tonight but we need filters so I can't. The windows are open, ceiling fan is on but it's offering minimal, if any, comfort. I'm hurting so bad tonight! One of our neighbors AC just kicked on. Man I'm jealous! I'm drenched in sweat. It's hard enough to sleep when it's hot but when you add pain to the mix is down right impossible.

One of my friends posted this quote on facebook today, wish I could apply this to my life tonight.

"I thank GOD for my afflictions as I take them to be living proof that the Devil despises my faith and is attacking me.
If there is no Darkness, how will we recognize the Light?"

 

Heat + Stress + HS = MISERABLE!

Oh how excited I was the other day to find this link for Hidradenitis Suppurativa Institute out of Ohio! Someone is finally doing something about this horrible stuff! So I called them. The phone went straight to voice mail. For 2 days I attempted to call, I left a message the first time. Finally today, 3 days after my initial contact attempt,  someone calls me back. The doc is out until next week, but when he returns they will check with him and see if he can recommend someone in the area! YAY! So that's my good news for the day...

It's so hot and sticky here. UGH! I don't know what the temp or heat index are right now and frankly I probably don't want to know. I know I'm sweating horribly. It causes burning in the bumpies. I guess they're slightly open so sweat must be getting in. Can you say OUCH! As if they aren't painful enough.  I have a lot going on the rest of the week, so it's sure to be interesting. We're doing the big bi-annual family garage sale at my in-law's house this weekend. Ryan went to start setting up today. I wasn't able to go help. Today was a pre-k only day for Reagan so he didn't have to go to school until 11:50. Ryan went to his parents house and I stayed behind to take the kid to school / pick him up. Tomorrow Reagan has speech class in the morning, pre-k in the afternoon. So we'll drop him off at 9:45, go work more on the garage sale set up, go to Liberty Hill for a meeting with Blake's teachers and discuss class ring options, then go back to setting up the garage sale. My mother-in-law is going to help us out and pick Reagan up from school so we can continue to work on the set up.

Friday and Saturday are garage sale days. Hope to have some good results to post Sunday from that. On the HS side, I'm predicting brutal pain.  Why don't I live in an environment that is a bid more HS friendly. IDK if it exists, but I would certainly be willing to try it. A place with milder summers. A place that HAS fall and spring.

HS is taking it's toll on me currently. I have multiple bumpies in two places. I'm not sleeping well with the pain and heat. It hurts to move, and I move a lot in my sleep...which wakes me up in agony. To add to this excitement, I also have IBS which is giving me a hard time right now. Seriously! Can I catch a break anywhere? The IBS requires me to use protective products that cause friction, irritating the HS. It's like I'm stuck in a revolving door of a horror show. This next statement may offend many, and that's the last thing I want to do. I'm going to say it tho because I need to. I want to record all of my feelings (physical and emotional) during this for my research project. So...here goes. At times I really wish HS was fatal. There, I said it. If you're still reading and you're offended I am sorry. I'll explain why I say that. If it was fatal then I wouldn't have to realize that I potentially have another 50ish years to live in pain and agony. If it were fatal it would have an end. Don't get me wrong, I'm NOT saying I want to die. If it were fatal I would still be doing research and hope to find a treatment and cure. I think it would be easier to think that I have X amount of time to live and say good byes, work on my bucket list. I wouldn't have the harsh reality of pain for the rest of my life. Selfish way of thinking, yes. I admit that. My babies are very important to me, and I don't want them to have to grow up without me. I want to see them get married, hold my grand babies - my great grand babies. I just don't want to hurt while I'm doing it. I mean no disrespect to those with fatal illness, and I'm sure I would feel differently if HS was.

So, tonight we had taco soup made with venison. Pretty good! A lot of seasonings that I can already feel doing a number on my tummy. Yay!  I've cut out caffeine again. So decaf tea for me. I'm really missing the caffeine to be honest. Ryan pointed out that I tend to have more outbreaks when I consume caffeinated products. I'm willing to cut it out and deal with the withdrawal headaches to see if it's a true culprit. When these bumpies clear up I'll have a few cokes or something to see if it brings them back. How else would I test it? ;~)

Guess I'll sign off for tonight. Little Einsteins is on and apparently I'm "Missing it mommy!" 

What is tHiS

HS...Hidradenitis Suppurativa. It sucks! It's painful, embarrassing, can be debilitating and just plain and simply disgusting! It's a condition of the apocrine glands (sweat glands) and skin. There is no cure for this "disease" (I personally hate that word!) It will only worsen over time. There are few treatment options that actually work. What causes HS? Some say it's genetic. I can tell you that it's NOT poor hygiene, it's NOT being overweight (which I am but that's another story). It's NOT caused by smoking. These are things that have been proven. There is NOT however, any proven cause. It's not, typically, a fatal condition. Secondary conditions brought on by HS can be.

HS presents itself as cysts or boils on the skin in the axillary (arm-pit), groin, under the breasts, where ever apocrin glands are, where ever you sweat the most. You will hear me refer to them as "bumpies".  They cause horrible scaring. They cause horrid pain and restrict movement some. My right arm pit is where it started for me. I have had this condition for over 10 years. In that time I have had such bad scaring that it's not only unsightly, it's caused me to not be physically able to completely extend my arm over my head. When I'm having an outbreak the extending is even more limited. I also get bumpies in the southern region of my body. This causes pain when standing, sitting, walking, laying down. There is NO comfortable position. I have to adjust my weight when I sit or stand. Walking is brutal as each and every step sends a pain beyond measure shooting through me. The good news / bad news is one in the same statement: I'm between stage 1 and stage 2. Good news for now because I'm not in as MUCH pain as I will be as it progresses. Bad news because there is no cure, there is no true treatment, it will get worse. It's a scary, depressing thought!

I've posted on facebook about wanting to try different "remedies" that are out there. I've tried a lot of different things, (I'll post about those individually later), and as of now there have been few things that have offered minimal relief.

For me, having HS means that I can't always do the things I want to do. We live in a very hot and sweaty area. Did I mention I can't use antiperspirant? Yep...it's true. I can use regular deodorant, but only if I am not in the midst of an outbreak. So if we run into one another and I avoid you, or back away from you during the conversation please don't take offence. I'm probably having an outbreak and don't want to offend you(r) (nose). 

I smile through the pain as much as I can but there are times when, despite my smiles and laughter, I'm in all out pain. I've gotten used to hiding it. My boys don't need to see it, and I don't want anyone to feel sorry for me.

My main reason for blogging about this is for my own personal research. Like I said, I'm going to post about things I've tried and the results (if any) of those things. I'll be posting about things that are going on in my world around the outbreaks. Since there is no real HS research to speak of in the US, I'll do my own. With any luck I'll be able to find something that will help me and maybe even be able to help someone else in the process.  If you're a survivor of HS, please leave comments as you feel like it. Tell me things that you've tried and how they work for you. Make suggestions.

I would also encourage readers, weather you have HS, you have a friend or family member with HS, or you're just curious about it; to help increase awareness. Maybe we can eventually get some research going. I'm hopeful. I'm tired of being in pain, I'm tired of bumpies, and I'm seriously tired of the crap I've had to put up with through this.  So...I've tried to explain it the best I can. If you have any questions please don't hesitate to ask me. You can either post it as a comment or send me an email or facebook message me. I'll do my best to answer it.

WARNING:
SOMETIMES THE POSTS WILL BE GRAPHIC AND / OR PERSONAL IN NATURE. I'LL MAKE NOTE OF THAT IN THE BEGINNING OF THE POST IF THERE MAY BE INFO YOU WANT TO SKIP. I DON'T WANT TO OFFEND ANYONE BY ANYTHING THAT I POST, BUT THIS AFFECTS MANY MANY ASPECTS OF MY LIFE, AND I WILL PROBABLY TALK ABOUT IT. IT'S A RELEASE THAT I NEED!