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I Have So Many Questions
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70 posts in this topic

(((BIG HUG)))

 

Nothing to see here folks. Just a fading rash. Pretty boring really... :D

 

(I say it's not getting worse now. That seems positive, true and not at all likely to jinx)

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YAAAAAAAAAAAAAAAAAAAAAAAAAAAYYYYYYYYYYYYYYYYYYYYYYY Abby!!!!!!!!!!!!!

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Thanks Squirmy! *restrained happy dance*

 

There are lingering hotspots here and there, and my sacrum/top buttcrack still itches quite a bit, even though it looks less inflamed. But the itch is different: it's an annoying itch for sure, but more like a "normal" itch, not the "OHMYGODI'MGOINGTODIEFROMITCH" itch that leaves me gasping for breath.

 

I still don't quite understand if I have Celiac or not (or whether that matters). Since I do not have DQ2 or DQ8, it would seem that it is unlikely, but maybe that is just a misunderstanding in the medical community? So, can I have DH without having Celiac? I am reading the book "Real Life with Celiac", and they have a chapter on DH, and while it's quite informative,  it seems that even there the information is mixed and there are lots of gaps. What a weird condition this is. It's fascinating and infuriating.

 

My mental health is improving - the anxiety has dissipated significantly. I have some lingering panicky moments, but I seem to be better able to deal with it when it arises. My therapist believes that I have some PTSD from this and I do not doubt it. My head, just like my skin, may take a while to calm down.

 

Now I just wanna know when I can eat butter again. I miss it so much. And ice cream...a whole summer without ice cream makes for a crabby Abby. And I cannot even console myself with Coconut Bliss as I have been abstaining from coconut - it was suspected of making me flare up, though it's hard to say if that was just the natural cycle of the rash. I will reintroduce it slowly.

 

On to dealing with the awkwardness that is the LI-gluten-free diet: a dear friend and neighbor came by to see me yesterday. I updated her on what was going on and told her a little about my diet restrictions. She said "Oh come on over! I'll make you gluten free waffles. They are so good." (Her husband is gluten-free) Anyway, I blanched a little. The idea of eating at someone else's house is still a little too daunting right now. So, I asked a little more about what was in these delicious gluten-free waffles. Amongst the things: whole eggs, soymilk and/or ricemilk, both with carageenan. *SIGH* I gently told her that it is better for me to just feed myself rather than try to let anyone else contort themselves to my needs right now. And then I invited her over to eat here instead.

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Terrific idea inviting her over to eat at your house!!!! That's thinking on your toes gal & being diplomatic in the bargain. :) 

 

Well, there's no time like the present to test some iodine. Pick your item. Maybe ice cream since you love it so much --- just make sure there is no carageenan in it. I have seen some with it. Hagen Daz does not have it if I remember correctly. Just do one item at a time though. Don't get mucked up adding 2 or 3 until you find out what this does.

 

As to the genes ----- those are not the ONLY 2 genes but 90% of the info. out there acts like they are. As more & more research is done they are finding other genes involved but there are not great numbers of them (or maybe enough research on them) for it to be touted all over the place. Sort of like everything you read about dh says the elbows, knees....... & we know it can be anywhere at all!

Sorry hon, if you have dh, you have celiac disease plain & simple. A dx of dh is a dx of celiac.

 

Your first paragraph above ---- oh yeh! You nailed it! And that's where I am ---- annoying itch but not the "OHMYGODI'MGOINGTODIEFROMITCH" itch that leaves me gasping for breath.

Ahhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhh...............................

 

Gotta run. Life calls. I wish I could take the phone off the hook so when life calls I wouldn't have to hear it ring or answer it. :lol:  :lol:  :lol:

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Thanks, Squirmy. The more I learn the more I realize how little we know about this condition! It's such a mystery. And it's frustrating when the medical "authorities" doggedly stick to incomplete or outdated norms.

 

I LURRRRRBE Haagen Daz! Ohmygoodness do I love ice cream. But you know what I decided I needed to introduce first? Butter. So I ate two pats of organic, unsalted butter (that I sprinkled with kosher salt). That's right. I just ate the butter by itself. I wanted pure, unadulterated buttery goodness. It was divine. :D

 

Here's the thing that's going on now: I ate the butter a 8 pm on Tuesday night. At 2:30am Wednesday morning, I woke up itchy with a new rash flare on my left flank. That seems too fast for it to be the butter that got me. So, I dunno how to go about this reintroduction if I just keep flaring up, seemingly randomly. How will I ever know if something is causing it or not? How will I know when it is okay to reintroduce foods?

 

Squirmy, I know you have been doing LI for 20 months or so and you still have flares. How do you know it's not something you are eating currently, even something that may be considered LI and gluten-free? Or do you just attribute it to the normal cycle of the rash?

 

The other thing that is weird about this outbreak on my left flank is how quickly it came back. A week ago, Wed. 8/7, the same area started to flare. By Tuesday 8/13 it was brown and flaky. (That was the night I ate the butter). And then Wed. 8/14 this new flare came on...and it came on fast! The "usual" progression has been: a little "pimple" that turns into a few more bumps within 24 hours that then flares up into a spread of hives. But this flare-up just went straight to the hivey spread - no build up. Seriously, just when I think I've got it figured out, it changes on me! It's wild. It's not so different that I had a reflare in that time frame but that it happened in the same spot - "usually" it moves on to another "quadrant". (And now I am wondering if that's true...back to my notes!)

 

I actually have 7 quadrants... septants? Left and right lat/pit/sideboob, left and right flank, left and right tummy and lower back. My lower back has been the problem child for the last few weeks. The rash there just keeps traveling from side to side and back again. I think a lot has to do with summer heat - it's hot and uncomfy when I am sitting in the car, on the couch and sleeping (I'm a back sleeper). I need to get more ice packs.

 

Some days I still cannot believe that this is happening to me. On the other hand, it has become my new normal, and that is kind of unfathomable and a little saddening. But whaddyagonnado? I don't want to fight it - that's stressful and exhausting. I refuse to accept or embrace it - that would be stressful and false. So, I just tolerate it. There is a certain peace in tolerance.

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The flares will hit the same places over & over again AND new places will arise. It happens. This stuff is a bitch with a capital B. 

It sounds like it could be iodine from the butter but then again it could just simply be a flare. You will not know until you test again & again. That's why it's so hard..... there are no true hard & fast rules with this stuff as far as when & how it flares & if it's iodine or not until you test, test & test again. That's a huge part of the reason I've been li for so long. I keep flaring & can't seem to find a spate of time when things are calm long enough for me to be able to get a good grip on weather it's a flare or caused by iodine.

 

How do I know it's not something I'm currently eating? B/C I don't take any chances with gluten ----- NONE . And I'm li sooooo...... doing that is the only way I can know it's the normal cycle of the rash. Believe me, this stuff makes you crazy. Despite all that I do; every once in a while I still question if I got gluten somewhere which is utterly ridiculous!!!!! That's how nutz this rash makes a person. For it to persist so long, I think, is an inconceivable thing for our brains to process or believe. We know it. The medical info. tells us that yet we can't believe we can be so vigilant & good & have this stuff still hanging on & on. 

Go here & start @ post #68 --- this is my story in pictures mol. after you finish that then go to pg. 6 to see what all that turned into. Beware! Page 6 is scary, VERY scary.

http://www.celiac.com/gluten-free/topic/94056-dh-photo-bank/page-5

 

And this is an example of dh simply doing what it does despite being pristine in diet & low iodine.

Edited by squirmingitch
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Oh Squirmy. That looks...I cannot even think of a word. "Uncomfortable" is too mild, "painful" is too generic. I am so sorry you have to live with this horrible rash. Was this the "worst" outbreak that you told me about earlier? Could you attribute it to stress at all?

 

What strikes me is how different your rash pattern is from mine: yours has many more individual dots. Mine is what I think Prickly aptly called "creeping crud". And I too, keep flaring - have been since June - without enough of a break for me to try any reintroductions. I tried the butter last week when the rash was the calmest it's been, but maybe that was too soon. Next time I am going to wait for a week or two (maybe more) after the all clear (no new itchy dots or spots, brown spots only, everything flaked off)

 

What I meant by asking about how you know if it is just the normal cycle of the rash is this: how do you know that you are not reacting to something else? This line of inquiry may be a result of me having read too much lately about autoimmune diseases. There are sites that tell me that I should quit all nuts and nightshades or grains and legumes, and still others that say I should limit bananas, leafy greens, broccoli...and on and on, until there is nothing left that feels safe to eat. I do think I need to not read so much right now. It makes me very anxious and fearful.

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Yes, that was the worst outbreak I have had before gluten-free or since gluten-free. It shocked the hell out of me! And it was the darkest days of my entire life. It was excruciating times 1,000. It felt like I had shards of glass embedded in my skin 24/7. Clothing was sheer torture so unless I absolutely had to go somewhere, I sat around the house nekked & still the lesions were beyond painful. All of that which you saw & more there weren't photos of & not one, not one got any infection. THAT is testament of the strength of the antibodies in our skin.

 

Reacting to anything else:

For over 6 months, it was closer to 9 months, I was low salicylate as well as low iodine so my diet consisted of cashew butter, flax meal, fresh beef, chicken, pork, celery, gr. beans, rice, peas, leeks, iceburg lettuce, bananas, deeply peeled potato, safflower oil, decaf instant coffee, egg whites, limes, plain salt & no other spices. What more could I cut out? If one has gut issues I can see going for what all those sites say but I seriously doubt any of the foods listed that I was eating was causing my skin reaction. And to put the test to that statement --- I have been eating everything except gluten & iodine since then & have actually improved as far as the rash goes. I no longer get the bone deep driveyouinsanescreaming itch. I am indeed improving albeit at times it seems far too slowly. I still get blisters but very few compared to before. I can go hours at the time w/o itching. I only wake once each night & sometimes sleep all the way through.

 

I think you are right --- you should not read so much right now. I did & it just made me crazy anxious & I fretted about every little thing I put in my mouth. IrishHeart (on this board) told & still tells ppl this:

Do not be afraid of food! You need food. Eat. And she will be the first to say a food log is a very valuable tool. But don't freak yourself out where food is concerned. 

 

The stress question:

ABSOLUTELY! Stress makes a huge impact on my rash & I know it. 

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:( Outbreak on my stomach today. I woke up this morning and everything was looking really good and calm. Then by 2pm, my stomach was covered in red hives. I dunno what to do, Squirmy. Is this the butter? Is this the hydroxyzine? Maybe it's my upcoming period? My stomach has been clear for a couple of weeks, my best area. New spots also showed up in my pits and sides. Ironically, my lower back is the calmest it's been in weeks. The rash has been steadily decreasing overall, and suddenly it's getting worse again. I'm so discouraged.

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Have you made sure the hydroxyzine is gluten free?

No, I don't think this is the butter now. That would have happened & you wouldn't be clearing & then relapse from iodine unless you ate more of it.

It could be your upcoming period. Hormones affect the rash. Pregnant women will get dh when they never had it before so hormones are certainly a factor.

Also, something I think we've missed telling you about is that the rash really likes to ramp up later in the day. It's different for each of us but it may begin in the afternoon or later & it seems like it's all a big buildup for the nighttime keepyouawakescreamingmeemies.

 

I keep telling you sweetie that this is what the rash does. Your back may clear but it pops up other places, then it may hit your back again. It gets better overall & then it flares & it makes you crazy. It does not have any manners. It follows no rules. You keep trying to figure it out but you can't. No one can. This is why I gave you those photos of me as an example. I had been pretty darn well clear with only a few places for weeks & then BOOM! it did to me what you saw in the photos. And it STRESSES us out. And stress feeds my rash so it's a viscous cycle. Abby hon, the rash is not going to go away overnight. I would like to think it would but at this point in time, with what's been going on with you, I think it's not going to be one of those Ta-Da! it's gone! things for you. The only & best thing I can tell you right now is not to expect it to do this or that b/c it will disappoint you every time. You'll get your hopes all up just to have them dashed upon the rocks & you end up on an emotional roller coaster. I've been there, done that. I know it sounds easy for me to say but just try to take it 1 day at a time & don't keep looking for it to show you signs that it's clearing for good --- you'll just keep yourself in a state. I did the same thing & in hindsight I can honestly say that I would have been much better off if I had not dwelled all the time on trying to figure out if it's going away or not.

Abby dear I know how rough this is. I'm crying for you & what you're going through. It sucks big weenies!

And now you need some monster hugs

 

((((((((((((((ABBY)))))))))))))))

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I know, Squirmy. I keep trying to reign in my hopes so as to not get disappointed but honestly, I don't know how to do that. I just want it gone. I just want to feel normal and be able to go out to dinner with my family or grab a bite with friends. I just want to not constantly be fearful that it's coming back, possibly forever, possibly worse.

 

But, none of that is so. And I am brooding over the past - the times when it was clear and I wish that I had read the signals better. I would be clear for months at time. I wish I had known. Then, I was clear for a whole week back in June, between the two worst outbreaks so far. Why was I totally clear then and not now? What did I do wrong? There is no answer for this, I know, yet I still seek it desperately, which only adds to the suffering.

 

I don't know how to maintain emotional equilibrium through this

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Hindsight is 20/20. I could say the same. I also searched & searched & searched until I was blue in the face when I began to get more & more places & never once did I run across celiac disease or dh. I put in every word about itchy skin & blisters every which way I could think to put it into the search engine. 

Think about this..... If you had not met your sweetie & he was not gluten intolerant then most likely you would right this moment still be eating gluten & the rash would be going insane & you would be going to the derm getting a ton of misdiagnoses & trying a bunch of creams & pills all to no avail. You would be continuing to do damage to your villi & the rest of your body. And this might have gone on for years like so many others have experienced. So perhaps it is kismet that you & your SO met when you did. And being gluten intolerant, he can relate & respect what you are going through.

And I know you need your "mourning time". I'm sorry --- I forgot about that phase.

You're going to be wonky for a while & then you will straighten out some emotionally. 

We're here & you can moan & groan & pitch a fit & cry. We're listening.

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It does feel like kismet! I feel very lucky to have this man (my sweetheart) in my life. I really cannot overstate how essential he has been in getting me through this. He has a fair amount of experience in caring for the ill and infirmed so I am in good hands. And he is so easygoing about food, which makes this restrictive diet so much easier. He just eats whatever I'm eating, never complaining, always complimenting. (Though I do make sure he gets his sardines once in while. Boy, does he love sardines)

 

I do mourn, Squirmy. Some days all I think about is what I cannot do anymore and I feel very alone or isolated. I want to go running, hiking or bike-riding but getting hot and sweaty is just no good right now. I want to sit in a taqueria, eating chips and drinking margaritas without worrying about what kind of salt is used. I want to travel, but that reality seems very far off. I want so many things that I just cannot have right now, and some that I will never have again. So I am trying ot focus on what I CAN do: I can sew and knit. I can cook and can. I can have friends over here and we can sit in the backyard and enjoy the sunset. I can do small house projects. Basically, I am trying to find ways to feed my creative self as that is as satisfying as eating for me.

 

This current outbreak is a little different: it has spread nearly all the way to the margins of the worst outbreaks back in June, but it's mostly flat, as opposed to lumpy, hivey and blistery. And it is so red! On my tummy there are not really individual spots, just a big mottled redness. The sides show slightly more differentiation and a few hives, but still, mainly red-hot and flat. It feels hot and prickly, like my skin has small tacks in it. The itch is there and super annoying but not unbearable. I guess my tolerance for itch is really high now!

 

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Awwwwwwwwwwwwwwwwwwwwwwwww man!  :(  :(  :(  :(  :(

 

I know that heat. Stock up the freezer with ice packs! A cold soak in the tub might help too. 

 

Awwwwwwww honey, I'm so, so sorry this is happening to you. Geez this stuff stinks!!!!!!! 

 

((((((((((((((((((((((((((((((((((((((((((((((ABBY)))))))))))))))))))))))))))))))))))))))))))))))))

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Shit that looks bad, uh?  I wonder if I should consider going low-sal as well? I do eat a fair amount of almonds now and herbs and many high-sal fruits. Good lord, more restrictions. But, I'll do it if that what it takes to get through this.

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Just an update: The rash is fading now. I have learned that stress is a HUGE factor, more than I knew. So I am working to reduce it as much as possible, through meditation, gentle exercise, therapy and naps.  :D  Food is less of an issue now - meaning, I have gotten through what I think was the worst of the learning curve of both Gluten-Free and low iodine and now it just feels fairly normal. I was even able to go out for a little snack yesterday! There is a vegan gluten free bakery in town (Petunia's Pies if anyone is ever in Portland). Vegan seemed like a good place to start because I can reduce the number of things I need to remember to exclude (dairy and eggs, namely). They use only kosher salt, except on their sea salt brownies, which I did not want anyway. They have an ingredients list for everything they make and are super accommodating - they don't get exasperated by a string of weird questions. So I sat and had a piece of orange-almond-olive oil bundt cake and some cardamom tea. It's a painfully cute bakery and the sun was shining on me and for a brief moment I remembered what normal was like. It was so nice.

Photoon8-30-13at1019AM_zpsb6890f52.jpgPhotoon8-30-13at1019AM3_zpsfb8bde84.jpgPhotoon8-30-13at1019AM2_zps5007905e.jpg

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Yep, the rash is purple/browning  now so that outbreak is on it's way to done. Yay!

 

Wooooooooo Hooooooooooooo!!!!!!!!!!!!!!!!! Going out for a nice little snack! Sounds delish!!!! Next time eat one for me will ya? We don't have any such type of place here. The only thing we have is a small restaurant who does understand gluten-free & cross contamination b/c they had an employee with celiac disease who taught them about it & got them to offer gluten-free meals. We haven't tried them out yet but will hopefully soon. We all need to go out to eat & feel "normal" sometimes. 

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*fingers furiously crossed* It's strange: figuring out just HOW much stress affects my outbreaks has made me feel just a little more hopeful. Like, it's one more piece of the puzzle that I have some control over. I cannot avoid stress, of course, but I can prepare and use the tools I have to manage it. And it also confirms something that I have always believed about myself: I do not operate well under stress, and I prefer to live life in the slow lane.

 

I'd mail ya a whole orange-almond-olive oil bundt cake if you wanted! :D  It was really tasty and the moment of "normal" went a long way in making me feel better about the future. I am fortunate that Portland seems to be fairly advanced as far as food intolerance awareness. There are more and more gluten free places everyday, some quite decent, all very accommodating, which helps me a lot. No Low-Iodine restaurants as of yet. Weird. :P

 

Tomorrow marks 3 months totally gluten free and 1.5 months low iodine. I'm celebrating by going to an all day meditation workshop. And I might bake some cookies...

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You're getting a handle on it! Keep the faith!

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Another month has passed. Coming up on 4 months of gluten-freedom and 2.5 months low iodine. Been reintroducing dairy, slowly after finding a shepherd that does not use iodine on the teat wash. Oh, glorious yogurt and cheese! Also, introduced butter. So far, so good. Tried some egg yolks, but I seem to be mildly reactive to them - I will need to try a few more times to be sure.

 

The rash has entered a new phase - less spread overall, much less itch and more just individual spots than the big continents that it used to be. The cooler weather helps. And the fact that I am not freaked out daily helps a LOT.  My nerves and emotions are much steadier these days - just re-reading my old posts, I can remember how I just felt like a live wire of fear and emotion, my poor tired mind busily, urgently trying to make sense of it all. Things are much calmer now and for that, I am thankful.

 

The one things that is lingering a bit is tiredness. I chalk this up to months of sleep deprivation, but if it goes on much longer I am thinking that I need to talk to my doctor about it.

 

Mostly, I just want to emphatically reiterate how essential this forum has been during this whole process. To find so many good people, with kind and helpful words on the internet? I feel like I hit the jackpot. <3

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    • I think the posters above have given you very good information and I will throw in my 2 cents worth.  I am surprised that they did not test her DGP IgA also.  I am sure that would have been positive.  They switched off with antibody classes and usually they do both tests for both antibodies.  IgA is more specific to Celiac but the IgG is also useful.  The testing shows your daughter is producing antibodies to the gluten in her diet. (DGP IGG). THe tTg shows positive for some damage or inflammation. You know........your daughter is only 4.  She hasn't been on the planet or eating gluten that long. It can take years for enough damage to occur for it to be able to be found on biopsy.  I would say it is highly likely that this is Celiac, especially with her symptoms. But because the damage hasn't graduated to bad enough yet, they won't diagnose her. I think you need to do what others have said and get all copies of testing and find someone else who will take a look and give a diagnosis, especially if they have you do a dietary trial and her symptoms go away.  That might be the only recourse if you want faster proof. I know I would want faster.  I would not really be happy if I thought I had to keep feeding her something that was making her sick.  If you keep her on gluten long enough, the diarrhea will probably show up. BTW.........the criteria mentioned regarding diagnosis does not apply to kids.  I know it's silly and stupid but most leading Celiac specialists do not go by this criteria for kids.......adults only.  Keep that in mind because it might come up.  You could recognize it but they might not. Have you considered gene testing, to help bolster a diagnosis? As far as false positives go, it's the other way around. False negatives happen more frequently than many people think.  It's a recurring theme here.  With her symptoms, which is what I had, a bloated belly and tummy aches are telling.  Have they tested her for lactose intolerance?  That can cause similar symptoms, although it sure won't raise those 2 blood tests.  Keep looking for Celiac because there are many red flags here.
    • This 4 out of 5 criteria does not apply to children. I was never given a reason why, but it isn't.     That said, you may try to get a second opinion from another GI who may be willing to give her a firm dx.  We were in your boat 6 years ago and while I'm sure I'll get slammed for it, I wish we had kept gluten in our kiddos diet till he scoped positive for a variety of reasons.  Again, even family is different and you have to find what is best for you!
    • Mnoosh, I had swollen lymph nodes prior to celiac dx and for a while after going gluten free. My neck as well as groin. The groin ones were the worst. Guess what? All gone! It's hard to recall a time line & consider that everyone is different but I think mine completely resolved within a year.  You've been given great information. Just breathe and then again, breathe. You're going to be fine. 
    • It is the only thing you have eaten, so it can't be anything else?  I eat it with no issues so I am not sure how you can be certain that is the problem.  All I am saying is that its sort of "your word against mine and the company's word".  
    • Thanks cyclinglady & manasota! I appreciate it. I came to give an update...... I'm still 99% itch free. I get a "place" like a bug bite once in a while that itches and I just use the prescription steroid cream on it & that takes care of the itch. My rash is healing up rapidly everywhere. Almost clear skin now! Yaaaaayyyyyyyyyy! Now for a rundown of the "treatment". For 20 days I took a 100mg doxycycline twice a day. Then we upped it to two 100mg doxy twice per day. I took those for 5 days & made rapid progress and the itching stopped. The doxy was getting my tummy though. It was getting really rough despite my eating yogurt. So on day 6 and day 7, I took two 100mg doxy in the am but in the pm I just took 1 of them. On day 7, I was nauseous for hours on end. So since I was still doing well without itching and the rash was healing everywhere, I decided to cut back some more. On days 8, 9, & 10 I have only taken two 100mg doxy in the am and none at night. I'm doing good and my tummy is much, much happier! No more nausea!  I'll update as things go along.
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