It's been a while.

It's been almost a month since I felt the need to blog. The tea tree oil applied directly to the offenders seemed to help quite a bit. And now...yep, a new one in a new spot (sorta).  I am so ready for more research. I am so ready to be the guinea pig if needed. To make life even more enjoyable the IBS is acting up again. Oh the joys of being me. :~/

So I started Cosmetology school on December 6th. That's going great. As I expected, it's kinda giving me a release, something constructive and fun to do with my time. It's almost a stress reliever (but kinda stressful on a different level).  I've been lucky thus far not to have any flair ups since beginning school. Until now. I've been mostly doing manicures, pedicures and facials in school. Today I started to roll a perm for the first time on one of my mannequin heads.

While I'm glad to be doing something with hair, it's kinda hard. Much harder than it looks or I expected. My instructor did tell me that the mannequins are harder to roll because they have so many different lengths of hair in their heads.
It's different than anything I've done in the past, but a welcome change. Since I started having babies at such a young age, I did what I had to do instead of what I wanted to do. That's why I went into the medical field. I developed a passion for what I was doing, and I loved it. Still do. But hair is what I wanted to do when I was a kid, and I decided it's time to do it.

So...back to the HS. It's a nasty, ugly, painful, debilitating condition. I hate it!! I hate life with it!! Don't get me wrong, I love my life. I have the most wonderfully handsome awesome boys in the world. They are the light of my life. I just hate that HS has to be a part of my life. It HURTS! BAD!! With no comfortable position - sitting, standing, laying down--it all hurts. I do have to count myself as lucky at this point. The right axellae is stage 2 and the groin is stage 1 as of now. I'm going to do you the favor of not posting pictures, but if you're curious feel free to do a google image search. You won't find any of my personal pictures anywhere but you can get an idea of what it looks like. Just be warned...it ain't perty! This morning I woke to a pea sized bumpie in the southern region. Lucky for me it's not on the joint as it usually is. Blessing or not? Not sure yet. I don't want to have the bumpies anywhere, but I certainly don't want it to be in the exact spot it is in now. Dear Lord, please let this one be a one time thing!! I really don't think I can handle them in this particular place.
I did a tea tree oil bath soak tonight, which did offer minimal relief for a few minutes at best. I will apply some tea tree oil full strength in the morning after my shower, and hope and pray that it will work it's magic.

So Christmas is in a couple of days. Along with this time of year comes the promised stress. I guess that's probably not helping the HS department. I really need to stop stressing so much, and just take life One Day At A Time.  I just wish it was easy to do as it is to say. I wish the HS Institute had some clinics, physicians, research teams etc here locally. I would be first in line to sign up for whatever treatment option they felt would work. I would volunteer time to help find not only a treatment but a cure.

Well, there you have it. Just when I thought I might be able to live a semi-normal life, HS has to come up and slap me around a bit and remind me that I'm not but a pawn in it's ugly game of my life. DAMN IT!

I was doing well and then...

I have been bumpie free for a while now. In fact, October 16th was the last time I had any issues. I got a lot of stress off of my back that day. I've pulled that post. I don't know, some may have read it already. If so, I'm sorry. If not, you don't need to. Basically it was just me venting some frustrations. After that, I woke the next morning bumpie free. It was awesome!
Some people think that smoking causes HS. Some people are wrong. I quit smoking on 11/7. I have new bumpies that have reared their ugly heads since then. Yes, I have had a couple of small slips since my quit. The bumbies arrived both before and after that. So if smoking is NOT causing it, what is?

Stress? YES!
Caffeine consumption? Possibly.
Stress? YEP!
Smoking? Nope.
Stress? Uh-huh.
Hormones? Probably.

So now you easily queasy peeps may want to stop reading here. This is where I start documenting the information about this bout of bumpies.

Ok, don't say I didn't warn ya!

So as of the now, I have 3 bumpies. One in the right axilla and two in the groin. None of them have come to a head yet. The one in the axilla is about three-pea cluster size. It's in a really awkward place in there, as if there's a convenient place in the area. I can't really put my arm down all the way. It hurts, feels like pressure, and I guess there is with my arm against my body. The two "down there" are the worst. There is one on the right side that is about marble size. Did you ever play with marbles as a kid? You know there are two sizes, the traditional marble and the shooter. This one is most definitely a shooter, the bigger of the two marbles. Now normally these will be in the crease where the leg meets the body. Lucky for me, this one isn't. It almost is, but not completely. It's about a finger width inside from there. The one on the left is smaller. It showed up uninvited today, right in that normal place we just spoke of. It's only pea sized, thankfully. This makes for painful everything. You'd be surprised what puts pressure in that area! Sitting, laying down, standing, walking. At the risk of sounding repetitive, there is NO comfortable position / activity.
So, what I'm trying as of now...Tea Tree Oil. I've done the bath soaks in the past, well I'm trying it full strength applied directly to the offending bumpie. Please, God, let it help! I am so tired of the pain! Usually I can find a song that I relate to with all feelings. There is no song that I know that deals with physical pain.

Ok, you can look now.

I quit smoking on 11/7/11!

Ok, so I've done well so far. This is hard!! I've been fighting off the cravings and urges for 1 day, 16 hours and 36 minutes as of 4:34pm today. That's pretty exciting. I've been smoking since I was 16 years-old, so that translates to over half of my life. This morning was hard! In fact I came really close to massive failure. I had a box of cigarettes and a lighter in my hand, I was in tears and ready to pull one out and light it up. I got through it and put on a patch instead. I feel a little bit like a failure still, but I successfully got through it without smoking one. God had his hand in that one, for sure!

Today I decided that I thought I needed something to take the place of the cigarette. I thought I missed the feeling of the cigarette between my fingers, the feeling of it on my lips, the action of bringing the cylindrical object up to puff. I was wrong. I decided to try pretzel sticks. Healthy, low fat, same shape only a little smaller. So I grabbed one and placed it between my index and middle fingers, noticing the disgusting nicotine stains. Gross. I'll admit, it felt kinda good to hold it there for a second. When I brought it to my lips it wasn't the same feeling. It felt wrong. Like I was cheating myself. I guess in a since I kinda was. I don't need that. I want it but I don't need it. It feels pretty good to admit that not only to myself but publicly as well. Oddly I feel better today than I have in a while. Even in this short time!

I've found that music is helping me through. I've always loved music. I typically find some way that it relates to me. That being said, it can also irritate me. Here's an example. Bad remake. Now I don't generally like remakes anyway but occasionally I'll find one that is pretty good, not as good as original, but pretty good. This one just irritated me when I listened to it. Anyone who knows me well knows that I LOVE music by Loretta Lynn. When I was a kid I wanted to be Loretta Lynn when I grew up. I also love Conway Twitty. (If you're not seeing a pattern, I really like classic country. I like current country music too, but 1980's and before is my favorite.) Ok. Back on track, why did this one irritate me so bad? Patti Loveless didn't say Louisiana correctly. Pitiful, I admit it. My whole family and I have always pronounced it the way Loretta sings it. Don't get me wrong, I like Patty Loveless music. So why does it bother me in that song? Awe, who knows. Maybe I was just looking for something to be irritate at.

Stress, HS and IBS

Today's auction was stressful as promised. There were about 14 bidders that showed up for this one. I was clerking on the fly and doing check in  / check out. Not an easy task. If someone comes in or leaves the whole auction needs to stop so that I can switch screens and get them checked in or out. Clerking on the fly...when something comes up across the block to sell, I have to put in the lot number, consignor number, description, hammer price and bidder number. It must be done in that order or the whole program gets confused and won't let me sell an item. Getting the ringers and auctioneer to acknowledge the fact that I'm needing the information in THAT order is difficult at best. Getting them to acknowledge the fact that they need to stop selling things while I get someone checked in or out is even more difficult. So, at one point, I was 3 lots behind due to them continuing to sell while I was checking people out. For some reason,the clerking desk is also the information central. I don't care if it's the person's first auction, or if they're seasoned veterans to auctions they always, without fail, feel the need to ask me all sorts of questions. Really we should have had 2 people with 2 computers doing the jobs I was doing....but... no such luck this time. It worked out in the end. I was able to catch their attention and stop the auction for a few minutes while I proved my inability to be super woman and showed the entire crowd my unprofessionalisim in order to catch up. That should bring them back! I guess I should just chalk it up to something else I can't do right.

The IBS was acting up today. Still is. My stomach hurts really bad. I've got some serious pain going on in the right side. No, it's not the appendix. I'm pretty sure of that. I don't understand how I have anything left in me. This will make for an interesting night. Nausea and diarrhea.  (Side note...this blog took longer than it should have due to trips to the restroom. Frequency is a problem!)

The HS? Oh. Now that's pain! I've got new bumpies in the axle and groin. One of the ones down stairs is draining. This one burns and hurts. I've been lucky up to this point where it's only been the right axle that's been affected. I kinda feel one trying to creep up on the left side now. How do you explain to someone that has no idea how bad this hurts? I don't think anyone really gets it. They've had painful cysts before, so they think they understand. HS is more than just cysts. It hurts down deep. The sinus tracts, tunneling, and scar tissue make each and every small little pimple sized cyst feel like it's been multiplied times a thousand.
I'm going to stop here. This is the part that gets way too personal, and I just don't feel comfortable sharing the rest of the HS story.

I guess I just suck at communicating with people. That's just who I am. Yep...another thing I can't do right.

NNNNNNNNNNOOOOOOOOOO!

I was feeling pretty good earlier when I posted. Now...not so much. The IBS decided to start acting up when we went to pick up Reagan from school, so we just went in and pulled him 10 minutes early. Poor kid. He was disappointed when he had to leave before clean up. He "needs to help". What a sweet boy!

My tummy has been rumbley since. Usually this means that a new bumpie is just around the corner. I took a probiotic, and am praying for it to settle down before the auction tomorrow. I can't be up and running during the auction. If I have to leave the room the entire auction stops until I get back. Not cool. So, of course, I'm stressing about it. UGH! I really need to find something to reduce stress.

Ryan and Reagan may need ear plugs tonight. My tummy rumblies are really loud tonight. I seriously don't like being me right now.

That's all I have for now.

I think I may be on to something!

Ok, so this post is going to be a bit TMI for some readers. You've been warned.

Are you still reading? Haha...ok....your choice!

I had that new bumpie that popped up in a place that I didn't want to discuss. Remember the post before when I was wishing for a donut pillow? Ok. Well, if you weren't using your imagination and your still stumped it's about to become painfully clear for you. You may want to skip this part.

This place I care not to discuss is not visible by me, I'm no contortionist.  So, the optimist in me decided that maybe it's a hemorrhoid instead. Not many people can say they're being optimistic and maybe it's a hemorrhoid in the same sentence and be for real about it! So I went and got some ointment. Then I got creative. I decided that since I don't know if this is a bumpie or the big "H" word, I might should do a little experimentation. Yes, I really did. I put a small amount of the ointment on other bumpies I have going on. Hey, women put it under their eyes to reduce puffiness and bags. I'm not putting in on my face. Well, I may be on to something! While it has not completely gotten rid of the bumpies, it does seem that they have reduced some. I will continue using this to see if maybe it will help. Now, if I could find something to help with the pain...

OK! It's over you can look now. No really, call the kids back into the room. I'm done with the gross part!

I'm a bit concerned about my stress level. Tomorrow we have an auction that we can't set up until morning. We have access to the building beginning at 8am, preview begins at 1 and the auction begins at 2. That means we have 5 hours to bring everything in, set up the tables, get everything lotted and entered and set up chairs. Now I know I'm good but I have a few problems with this. I HATE mornings. Yeah, that's the biggest problem I have with it. I just don't do mornings. I'm also stressing about the time crunch. It takes a bit longer than that usually. I can clerk on the fly, which is what I'll probably end up doing, it's just going to make the auction go a little slower than it should since I'll have to look on my list to get the consignor's customer number.

I started reading a new to me book today. It's the Women's Devotional Bible that I picked up at a garage sale recently. It's a surprisingly easy read the devotion that I read today was awesome! I did something today that I haven't done in YEARS! I started the day with God. Prayer and reading. I'm amazed at how much better I feel today.

That's all I have today. May write more tonight...

What the what?!?

Maybe it's the full moon out tonight. Maybe it's the fact that there is NO breeze and it's hot in my room tonight. Maybe it's the pain from the ugly monstrous bumpie that decided to show up in the most inconvenient and irritating of places. I don't know, but I can't sleep.

I have to be thankful...the bumpie feels like it has shrunk some. I can't see it, but I can sure feel it!

Stress. Ah yes. One of the main contributors to this mess. There's some happening in my world. Without going into specifics, I'm worried about a few things. Not little things, these are big major stress inducing problems. I'm sure God will see us through. I'm trying really hard not to question Him on it.

My ex showed up at my front door tonight. Drunk. Apparently he and his girlfriend split up....again.... The boys are about fed up with that whole situation, yet they want their daddy to be happy. I just wish they would talk  to him about it. He's not much of a talker tho...he's more of the fun guy. Kinda adds to the stress factor a little. Because of how much my kids hurt on his behalf.  I'm a mom...when my kids hurt I hurt!

I got an email today that mentions Jr Prom for Blake. It's quickly approaching. I'm not ready for this. Everything just seems to be happening all at once. Blake is growing up way too fast. My little boy. It doesn't seem like it's been that long ago when I was about to take him to school in 1st grade. He said "Mom, if you want a kiss and hug you have to do it now because you can't in front of the school" (this was just before we walked out the door of the house). and now I'm helping him pick out his class ring, getting emails about Jr Prom, having to admit that he's 1/6 of the way through his 2nd to last year of high school, helping him look at colleges, looking for SAT prep books / study guides. I'm going to cry! I'm going to absolutely break down. This is just happening too fast! I remember how scared I was when I found out that I was pregnant with him. How terrified I was the day I gave birth, and how all of those feelings were replaced by a love I never knew existed when I saw that tiny face, and held that beautiful little boy in my arms for the first time.

I know it seems that I've gotten off subject here, but I haven't. See, to me stress isn't just about things going on around that are bad. Am I stressed about my baby like I just described? Yes. Is it a bad stress? Depends on how you look at it. I think stress (good or bad) releases hormones that obviously by body doesn't know what to do with. So, hey...why not make a bumpie out of it! Yeah! UGH!

Maybe my mind is running in too many different directions and that's why I can't sleep. Hmmm....

There? Really??

Yesterday was too good of a day. Must have been the calm before the storm. Woke up this morning to a seriously painful storm! Really wishing for a donut pillow today. There was no comfortable position before, or at least I thought. Now, ummmm....Nope. Laying down hurts. Sitting hurts. Standing hurts. Moving? Oh please don't make me! But I have to. When Reagan goes to school tomorrow I have so many chores to do it's ridiculous! Can't be avoided. I'm most likely not going to be very nice tomorrow, so if you cross my path you've been warned. It's already happening tonight if I'm honest.

Feeling a bit lonely. Weird since I'm surrounded by the people I love most. Reagan is sleeping right beside me as I type this. Snuggled up next to me. I hate this feeling. I'm trying really hard to cover the sadness that I'm feeling but it's not really working. I really hope the kids haven't noticed. It's hard to get away to cry, but that's all I want to do right now.

Seems as tho nothing I do or say is right recently. I wish people could understand. I wish I knew how to explain it to people who have no idea. I don't want to feel this way! I don't want the physical or emotional pain. Everyone in my life seems to be on me about what I've done wrong, or what I am doing wrong. I'm just tired of that. I try to avoid these people when possible because I'm afraid I'll snap.

Ok, that's all for my rant tonight. I'm sure someone will complain about this too. Oh well. It's how I'm feeling. Deal with it or don't read my blog anymore!
Love,
Me

Pretty great day today!

Woke up this morning feeling good. There's only one bumpie left under the right arm, and it's shrunk in size. You know the little colored balls on the end of a straight pin, well it's down from a pea to that. So not too much smaller, but still smaller. The other ones just went away. Didn't have to deal with draining or anything. Thank you Jesus! The bumpies in the lower area are gone. They did leave some scaring and sinus tracts. That's a bid depressing, and a little painful - not as painful as the bumpies that they took the place of. At this point, the only thing I can conclude is caffeine must play a part in this. So what I know so far...hormones, stress are absolutely triggers. The caffeine-free experiment began  as I was having those monthly hormonal surges and drops so this week I will test it and start to consume caffeine again. If I see a return, I will know. After that, I'll probably start limiting rather than omitting caffeine from my day. I'm kind of a bitch without some caffeine. I had 2 glasses of tea today. One regular and one unleaded. I'll tell ya, I was a whole new me after that regular tea.

If you're also on my facebook list then you've probably already heard this part...I got a bit spooked today when I came face to face with a scorpion. (shudder!!) We took some items to donate at Goodwill. Saw an old friend, Adolf, who was working there. We unloaded a desk and Adolf says "Nice scorpion" and points at the desk. Ryan starts poking it and the damn thing came to life. I of course jumped three miles back, ran to the truck and grabbed something to smash the thing with...it disappeared. My heart was racing and I was FREAKED OUT! Ryan found it again and started playing with it. I pulled off my shoe ready to smash it but it fell on Ryan's finger. I jumped and screamed like a girl. I am seriously deathly afraid of spiders...especially scorpions (and tarantulas). So...my dear Adolf did what any good friend would do...posted a picture of a scorpion on my facebook wall. I'm not even kidding, looking at the picture freaked me out. LOL. I didn't used to be this much of a girly girl. I'm not sure when this happened. Haha. Here is the picture that he posted. While it is a cool looking picture, it's freaky! Maybe it was payback for the gift I gave him 20 years ago...Thanks Dolfo. haha!

So, yeah....pretty great day today. I did think of another friend of mine when this was all going on. Lori makes these really cool necklaces with the "Free Range Scorpions" she comes across. They are pretty cool...I have to admit it - I just could never have one in my house. I'd be afraid that some how some way the thing may have lived through the process and may get out of his casing and attack me. Yes, I'm a bit paranoid. LOL.That being said, if the necklaces are your cup o' tea I'll post a link to her facebook fan page so that you can go like her and get ordering info.  So here's a pic and a link for ya:

And her facebook page: DonkStar Designs   Go check her out. She makes all kinds of jewelry with these creepy things. LOL. They're fascinatingly spooky.

I am still feeling a little "down" today. Maybe that's something that will pass in time. I'm thinking that the blues, or depression or whatever it is that's got me down is directly related to the HS. Makes since since it is hormone related. I wish there was a way for them to test and discover which hormone it is. Then maybe they could start an HRT to counteract / treat this mess.

Nope, not feelin it tonight.

Well....
So I had another bumpie start to drain today. Lucky for me it was a small one so not so bad. The ones under the arm are still there and unchanged. I'm so glad they haven't grown.

Maybe I'll try this again tomorrow. I have so much I want to write about but it's just not coming out tonight. I guess I have other things on my mind. Stressed quite a bit. Stress aggravates HS, that much I already know. It's been proven in my world. I should blog about the stresses in my life, to attempt to reduce the stress level and help keep the bumpies at bay. Maybe I'll start a new blog for that. If I can find a way to password protect it.

That's all I got for tonight. The end.

Not a good way to start the day

We have a football game tonight for Blake. It's been a while since we've gotten to see him play as all of his games have been away. Like really really away. I'm really excited to see him play but woke up this morning with issues. Under arm is hurting pretty bad. The bumpies that are there haven't changed in size at all. 1 pin size, 1 pea size, and 1 cluster of 3 pea sized. They're not very big but they feel monstrous! As if that's not enough, the IBS is acting up. I'm having to stay pretty close to the restroom, and my tummy is so NOT happy with me.

Last night we had a taco casserole for dinner. Taco meat, rice, Doritos and cheddar with a salad on the side. I guess it's possible that was a bad idea for me. I also had a pretty stressful conversation on the phone yesterday, so that probably didn't help either. I'm ready for things to settle down and move on over to some resemblance of normalcy. Is that asking too much!?

With any amount of luck I can take something today that will help settle the stomach so that I can go watch this game tonight.

Good day!

I'm so excited...I've had a good day today. One of my stubborn bumpies drained overnight last night. Woke me up with pain, but today was worth it. One down, three to go. I don't think anything that I've done so far has attributed to the draining. It's really too soon for that, and I haven't been able to put anything on this one due to it's location. While I'm not anywhere near feeling great, I do feel good! It's almost like a since of accomplishment, even tho I've done nothing. LOL

I'm doing everything in my power to bring my stress level down. I'm looking for ways to do this, so if anyone is reading this and has stress relieving ideas - please let me know what they are!

Had a new bumpie show up under my right arm today. At this point it's about pea sized. Since I started this blog before this bumpie reared it's ugly face, I can monitor it from it's beginning. The other two under the arm are still the same size, and the two others are a bit further south, right where the leg meets the body. The one on the left is pea sized, and has been for a while. The one on the right is marble sized; also has been for a while. I wish I would have documented their arrival. The one under my arm is pretty painful, and has limited my ROM again. Between the bumpie and the scar tissue already there, I can't lift my arm higher than shoulder height without a sharp shooting pain. I physically can't raise my arm completely above my head. It just doesn't move that far anymore.

Back to the new one. I'm planning to try straight Tea Tree Oil tonight. I've done the tea tree oil bath soak, which, if nothing else, helps with the pain if for only a few minutes. Since it's hard to get my armpit under water in the tub, this will be the perfect time to try it undiluted. I'm a bit worried about doing that since I have a perminate open area right near it. It's kinda weird, this perminate opening. It's only about pin size and it doesn't have any drainage at all. Just a pin sized hole under my arm. Kinda sucks. LOL

So, that's all I've got for today. Good day over all. Yay!

This one may include TMI for some!

I'll go ahead and apologize in advance. This post may include a bit TMI for many of y'all. I'm sorry. I really just need to keep full record / track of everthing that goes on with this.  If you're even the least bit squeemish, please stop reading here.

I started to post last night but was just too tired. We did the big family garage sale Friday and today, and plan on doing it again tomorrow. Friday was pretty tough. The heat was horrible, I got a slight sun burn, and to top it off my monthly problem arrived. UGH! I had a few bumpies that popped up a few days ago. So I'm thinking that these were more than likely brought on by pre-menstural hormones. I had 2 in my right axila, one about the size of a pin head, and one was about the size of 3 peas bundled together. Then I had 2 on the groin, one on each side. I went to bed around 10ish last night. Sore, hurting, not feeling well at all. I didn't feel sick, just didn't feel good. A general not feeling good. I guess it was a combo of the sunburn, the exhaustion and the bumpies. They seriously make me feel horrible.
I woke up at about 11:30 with Reagan who was having leg cramps again. Poor kid was hurting, trying to kick the pain out of his legs. During this, he accidentally kicked me in a bumpie. It took all I had in me not to scream and cry along with him. That was painful. The bumpies are always uncomfortable at best, but more often just sheer painful. When they are touched it sends serious pain shooting through me, never mind being kicked at full force by a four year-old with some monstrous leg muscles! We finally got him back to sleep, and I was finally able to return to dream land through the torture. It's not possible to find a comfortable sleeping (setting or standing) position, but I did go to sleep. Woke back up again at 1:30 feeling nauseated. Went to wash my face, hoping it would help with the nausea. Ended up vomiting several times before I was finally able to make it back to bed. I also found a new bumpie during my 1:30 trip to the bathroom. This one is more on the inside of my upper thigh, right up on my buttock area. It's incredibly painful! Now, I mentioned earlier that my monthly problem arrived...yeah this means friction up against 3 of those bumpies.
So today we did the garage sale again, like I said before. Up on the feet, pain with every step, every bit of weight as I stood, every time I sat down. This hurts. I don't know what else to say. Nothing else really that I can say about it. That's what's on my mind. We're doing the garage sale again tomorrow, then it's clean up time. Y'all probably don't get just how big this garage sale is! It's a 3 day minimum set up if that gives you any idea. I took some Midol for the pain. Once I swear that it caused one of the bumpies to open up and start draining. Maybe it was coincidence but maybe it's truly something to help. I don't know. I guess I'll find out if any of these start to drain during this round of Midol. I guess it could be friction causing it to open.
I'm going to attempt sleep again. It's after 11pm now, and I'm tired. Here's to praying for a restful night. Although I won't hold my breath.

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!