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!"
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