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WestCoast1

Getting To Know You - Archives

255 posts in this topic

Hi, my name is Donna :) I was on the old board, but didn't always post a lot - but did get a lot of useful information from everyone's posts. I have Diffuse Systemic Scleroderma - I was officially diagnosed in 2001, soon after officially being diagnosed with AIH (autoimmune hepatitis). 'Some' of my other medical problems are anxiety/depression/panic disorder (which I have suffered with since high school), tachacardia, degenerative joint disease, degenerative disc disease, osteoarthritis, inflammatory arthritis, Fibro, irritable bowel since about 1992 - lets just stop there - LOL........

 

I am married, am 53yrs old, have one biological son who will be 21yrs in a few weeks and will be a senior in College, and after College is going on to Vet School to become a Veterinarian. I also have a stepson - 29yrs, and a stepdaughter. She is a single Mom with a 19month old boy, and a 2 1/2 week old girl...So, yes, I am a grandmother - kids call me MEM and my husband PAP.........

 

I no longer work outside of the home - I have trouble working inside the home anymore. As far as my SD - I have a great deal of Gastro problems, from swallowing all the way to bowel problems. I have a lot of problems with my hands - I have never had a full blown ulcer on my hands - but do get the start of them, and am always told by my rheumatologist to immediately put an antibiotic on them and a bandaid for a few days - so yes, I do have the Raynaud's also.......

 

I have a great deal of joint pain, and also have a lot of trouble with my feet - just like a persons hands curl, the toes on my right foot seem to turn under. And as most, suffer with a great deal of fatigue. My last echogram was normal, my kidney function tests are normal, but have slight pulmonary function reduction.

 

I take Imuran as my autoimmune drug, because my Gastro first put me on that for my AIH, so rheumatologist says stay on that...

 

I am from eastern PA - about an hour north of Philadelphia. I see a big decline in myself in just the last year or so in what I can and can not do - either my hands don't work right to do it, or the fatigue level is bad, but I keep on trucking and trying :D

 

Just recently at one of my scheduled visits with my primary care physician, I told him, I don't get dizzy or anything, but just feel like I am off balance at times - ANYONE ELSE HAVE A PROBLEM LIKE THIS ? I have never fallen or anything, just feels like I 'sometime' sway to one side - he suggested using a cane - I see my rheumatologist shortly so will be discussing it with him - Anyone else ever hear of this being connected with SD?

 

We currently have FIVE cats :rolleyes: and one older dog - I guess this is what happens when your son works for a Vet Clinic and plans on becoming a Vet himself........

 

I really think I had the SD longer than I think - I often look at pictures of myself from before 2001, and you can even see on the pics my 'sausage fingers' - it wasn't till I kept complaining of the severe joint pain, that wasn't on weight bearing joints, that I went to a rheumatologist - it didn't take him long to diagnose me once he did the blood work and just looked at me in general.

 

Well, now that I have babbled on for so long, guess, I should stop.

 

Any questions, please feel free to ask..........

Take Care All............Hugs........Donna

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Hi Donna ,

 

Welcome to the forum. I tried to send this earlier but it wouldn't go through. We live in Lancaster Co., Pa. My son (19y/o) was diagnosed last fall with sine Scleroderma or UCTD....depending on which doctor you talk to. He's got major esophageal/gastric issues, mild restrictive lung disease, vocal issues, fatigue and postive blood tests but no Raynauds or skin issues.......yet. He started Plaquenil June 1 and I have alredy seen positive results as far as him having more energy, *****, etc. Tonight his Dad had a sneezing fit and Gareth said 'bless you' when he finished and a few seconds later he muttered 'not.' That's the kid I want back!!!

 

Take care, Everyone.

Margaret

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Hi Everyone

 

Not to sure what to write. This is my first night and I'm totally new to forum. So I guess the best place to start is who I am. My name is Deb and I'm in Alberta,Canada. I have Generalized/Diffussed Scleroderma. I was verbally diagnosis in 82 and went through my testing in 83/84 after my 3rd child was born. I went systemic while I carried him. Never been lucky enough to have a remission yet, but I fight and don't know the meaning of the words "give up" I started a Canadian patient organization in 84 because I knew there had to be others like me out there needing help and info. I am a fighter in the worst way and try to always have a smile. lol like most of us out there ....there are tons more to write about, but I won't bore you with that at this point.

 

Take Care All hope to chat more in the future. It's nice to see something like this out there, where people can reach out.

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Ok, I guess I've put this off long enough! Here goes.

 

I'm a 44 year old hairdresser(45 in 2 weeks)Yikes! I've been married to my best friend for 15-1/2 years. We have two girls together and I have one girl from a life long past! The oldest, 21, just finished up her EMT and is currently taking a specialist course. Come fall she will start her Perimedic and one other class will give her an associates in Science. The middle child, 14 in two weeks, is very athletic, plays the clarinet and marches in the high school marching band and is taller than the rest of us. My baby is 12, loves tennis and plays the flute, she will not march for a couple more years. My husband loves the outdoors, hunting, fishing, camping, mushroom hunting, geocaching, you name it, it its outside he's there. He'd have us living in the woods somewhere if I'd let him :rolleyes:

 

I've been a hairdresser for since '88 and am still working. I was diagnosed with sclero in '98. I like to draw, bicycle, read a good book, chat the on the net with my new found sclero family. I even drove to Georgia to meet someone that I met on these boards this past spring. It was wonderful!

 

I have 5 brothers, i'm #5 in line. My parents are both still alive, my mother has scleroderma also, and my father is going in for triple bypass surgery in two days.

 

I can honestly say that having sclero has definitely changed my life, and not all for the worse. I've learned to look at life and people in a whole new light. I truly believe it has made me a better person. I also believe that the power of positive thinking can help you overcome anything that life throws at you! And when you're down, try to find something to laugh at, you'll be amazed at the transformation your body goes through with the feeling that laughing brings about. :lol:

 

I thank you all for being here when I need you, and it gives me great comfort to know that someone is always here.

 

I wish the warmest and happiest thoughts to all of you everyday. Even though I don't post much anymore, I'm always here, lurking about.

 

I'm sure I left out something, but that pretty much sums it up.


Happy people don't have the best of everything, they just make the best of everything they have!

 

Warm and Happy to you! Vee

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Hi Everyone! My name is Katrina and I'm from the Philippines. Im 28 years old and a trainer for a company here in Manila. Hmmm.... it was about a month ago that I was able to find this site and it has really given me a lot of helpful information about scleroderma. Most of all, i found people having this illness and are not afraid to talk about it and are supporting one another.... I would like to get to know you all and I'd also like to share our story :)

 

Truth of the matter is that I am not the one afflicted by this disease. Its my fiance, Ed. Just like most of you it took a year before any of the doctors here in the Philippines was able to correctly diagnose his illness. Ed is also 28 years old, he is a banker and what is amazing about this guy apart from his real big heart is that he is a real good singer as well! My fiance embraces life and the people around him with so much love and enthusiasm.... At this point we stop asking the Whys.... :)

 

Here in the Philippines Ed had to go through all kinds of tests and a biopsy for the doctors to diagnose him correctly. We sent him to one of the best hospitals with some of the best doctors in the Phil. however, scleroderma was only seen and heard in textbooks until Ed came along --- he was the first real live person that they've seen with the disease... the doctors had to do research and it took about a month or so before the doctors FINALLY diagnosed him with localized scleroderma... yes, we are thankful everyday for the diagnosis... its lesser of two evils :)

 

Whew... Im running on with so many words.... Its the first time that I actually get to share these thoughts with people who know and are in the same boat as Ed is now... at any rate, I wish to meet you guys and get to share some thoughts about anything under the sun! :)

 

Before I let go of this litany ---- I am just wondering if there are any of you in the forum who is from the Philippines as well --- would like to know if its just my fiance who is diagnosed with scleroderma in our country....

 

Nice to meet everyone! :) See ya' all around!

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Hi Artsykata,

 

Welcome to the sclero forums. I'm really glad you found us. I'm sorry to hear your fiancee has scleroderma. I hope that you can share the information you find here and better yet, get him involved.

 

I look forward to your upcoming posts.


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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Glad to see you posting something about yourselves Gaurav, Donna, Bawana, Vee (hi, oldtimer) and artsykata. I look forward to seeing you participate in in the other topics in the forum.


Warm wishes,

Jefa

 

Carrie Maddoux

(Retired)ISN Sclero Forums Support Specialist

(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

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Hi All,

 

I live in Arizona which is a pretty good place to live if you have Raynaud's with Limited Scleroderma. It was 111 degrees today but my feet and hands still get cold. I was just recently diagnosed and I have so much to learn about this topic..... I am so glad that I found this forum.......I have already gotten so much information. Thanks to all of you for sharing your stories.

 

 

Spanky

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Hi Spanky!!!

 

Welcome to the Sclero Forums. I am so glad you found us, but sure sorry it's due to your recent diagnosis.

 

You will find so much information, support and friendship here and we welcome you to the family!

 

I love AZ! My mom used to live in Tempe.

 

Looking forward to knowing you better.


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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Welcome to the ISN Sclero Forums, Spanky. I am happy that you found us, but sorry about your diagnosis of limited scleroderma with Raynaud's Your input will be welcome on the subject as one who suffers in spite of living in a hot place. Please just get right out there and interact with the rest of the group. It is a hotspot of support and information.


Warm wishes,

Jefa

 

Carrie Maddoux

(Retired)ISN Sclero Forums Support Specialist

(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

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Hi friends,

 

I've been posting for some time and yet, I've put off doing this; no clue why! First off, this forum is truly a great place for people with scleroderma and/or their loved ones; you can't beat the people here who really support each other. It is one of the silver linings in the "cloud". The ISN site is, in my opinion, top notch with all the resources they offer.

 

I started my scleroderma journey with raynauds in 1997 or so with an extremely severe attack as my husband and I were cross country skiing. Once you are out in the woods and the attack begins, it takes the same amount of time to get back to the car. Being clueless as to what was going on, I thought my hands were going to fall off! By 2002 the hand swelling was in full swing and I had 2 areas of skin hardening on my face. However, I put off telling my primary care physician about this until 2004 when he sent me to the rheumatologist. Presto: you have limited sclero. I have some mild GI problems; I just got a good report that cellcept use for 2 years has cleared up mild ILD; the skin on my hands and face has softened; my mouth is still shrinking. I have an overlap of lupus; Hashimoto's thyroid disease; Hashimoto's encephalopathy (a very rare neurological complication of the thyroid disease); seizures (related to the encephalopathy); degenerative disc disease; let's stop there, why dwell on this stuff.

 

The good news: I am 52 and have found that liberating! My husband and I have been married for almost 33 years. Yup we were babies when we got married. And then we had 2 baby daughters of our own. Our oldest will be 30 this year and has a 3 year old son; daughter #2 is 27 and has a 15 month old daughter. Being grandparents is turning out to be our favorite volunteer career! My husband and daughters are very supportive, helpful and understanding. (I'm the one who had the hardest time adjusting to not being the super achiever/get it all done/always organized person; in fact, I haven't seen her for a few years now!) One of my sisters is my best friend. She is super understanding, great fun and also a good driver. I don't drive except to a couple very nearby; some of my problems from the encephalopathy make that kind of dangerous for me and the other folks who might be out there when I am, so between them all I make it to my appointments and shopping, etc.

 

Up until this past year, I was an assistant prekindergarten teacher. I also develooped and coordinated an education program for the parents of the kids in our at risk program. I can't tell you how much I miss the kids and their parents. I feel so fortunate to have been able to have done work that I enjoyed doing and that I felt made a difference. Unfortunately, it's pretty high energy, brain draining, involved lots of out of the classroom hours....all things that I can't manage any more. So, I have applied for SSDI, been denied twice and next I'll have a hearing. Hopefully, better results at this level.

 

This is more than enough information. Maybe this is why I never got around to doing this. I knew it would take waaaaay to long! If you read all of this, you should get a prize! :P

 

xoxo emmie

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Hi there emmie,

I won the prize and I am so glad that you decided to post here! It is great to hear about your wonderful family.

 

I am always sad to hear that someone else suffers from Scleroderma (and the extras that sometimes accompany this Autoimmune dissorder). I do hope that you continue to enjoy life dispite this illness.

 

Welcome!!! :)


*WestCoast*

 

********

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Hello Everyone!

 

I have only made a couple of posts because I have just been soaking in all of the help that everyone on this board has been so wonderful in posting.

 

My story begins with my husband Jerry and I on vacation in Pennsylvania at a family reuinon in July of 2005. We live in Southern California. Our twin baby boys had just turned one and we wanted to show them off. It was absolutely beautiful weather but my husbands legs were bothering him. He did not think anything of it.

 

Then in October (three months later) my husband had to have his wedding ring sized bigger because his hands were larger all of the sudden. We have been married 13 years at the time and so I thought, lets go to the Dr. and just make sure everything is ok. The Dr. said everything is just fine. You are a very healthy 37 year old. Nothing to worry about. Three weeks later we had to have his wedding ring resized again. I just felt I knew something was going on so we scheduled another appointment. They did a battery of tests and then two weeks before holiday, they found that my husband has Scleroderma.

 

With all of that said, it was pretty scary for us. I did a ton of research and then we scheduled an appointment with Dr. Clements at UCLA. He was wonderful in answering all of our questions.

 

Well now it is two years later and my husband is doing good for the most part. He will not take any drugs at all (my husband has never even taken an asprin if he had a headache in the past) but he does take natural supplements.

 

His fingers are bent and he has a hard time getting up out of his chair, he gets callouses on his feet really bad making it difficult for him to walk and has lost alot of weight. He is 6'2 and weighs 158. He has always been tall and thin but now he is really tall and thin.

 

We have our twin boys (who just turned three on Sunday) and they are the best distraction that we could ever have. They really keep us on our toes and most of our energy is focused on them. No time to dwell on the negative that's for sure.

 

My husband is a wholesale lender and I am a realtor. So we are very blessed in the fact that we both can work from home. On the days that I have to go out he stays with the boys and on the days he needs to go to the office, I stay home.

 

So that is a little about us. I just wanted to say thankyou again for all of you who have given me so much insight in helping my husband in any way I can.

 

Big Hugs to all of you! And many many thanks again. I hope I can really contribute in the future.

 

Best,

 

Nancy

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Welcome to the ISN Sclero Forums, Nancy and Jerry. I am glad to hear that you have found so much help here and glad to see that you have decided to start posting. I recommend jumping right in wherever something interests you. We have several partners in the forum who regularly share their experiences. I am sorry this disease has complicated your life with the twins, but it is good that you are able to both work at home to share the responsibility. Two babies is twice the fun and work in the best of situations. :)


Warm wishes,

Jefa

 

Carrie Maddoux

(Retired)ISN Sclero Forums Support Specialist

(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

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I'm 42 & just received my official diagnosis of limited scleroderma. doctors say I've most likely had a mild case since childhood, but now my hormone change is triggering progression.

 

I have a 19 year old son who was diagnosed with a genetic immune deficiency when he was 5. His immunologist says it's unrelated to my sclero. My rheumatologist, who seems to be a genetic specialist, says they are most likely related, that we may both have a genetic factor that makes us succeptible for immune issues, but due to environmental factors, ect. we manifest differently.

 

I'm vegan & into animal & earth rights. Been wanting to get rid of my car & start biking, but finally gave up & got a diesel car & had a waste vegetable oil (WVO) tank installed. Now I can get dumped oil from restaurants, pour it in my tank & spew out minimal pollution. Since I have my Master in Education, I'm considering offering presentations to classes on transportation powered by WVO.

 

Of all the symptoms I've had, the one that's throwing me for a loop is hip bursitis (whether this is sclero related, who knows). That's why right now as I type I'm sitting on an exercise ball. I even replaced my office chair with one too. Night & day difference. But the thing that's helped the most with this is stretches I learned at physical therapy. I'm the ultimate skeptic, so after my doctor gave me the referral I refused to go. But after a few more days of pain & no sleep, I caved, & really it's turned my life around.

 

The thing that hurts emotionally even more than my diagnosis is my parents reaction. None. I've had issues with my folks my whole life, but I thought they would at least express some words of care. When I was 20 they disowned me when I discovered I was gay. Their reaction now is flashing me back to that time of raw parental rejection. So on top of dealing with this diagnosis, I'm going to be dealing with their rejection again. I don't understand it, as a mother now I can't even imagine rejecting my child like that. I want to forgive & move on, but it's just so hard. That's why this forum means so much to me. You're almost like my adopted parent - always there, 24/7, always a caring word, except you also have the added benefit of your expertise. Thanks for being there for one & all.

 

Peace from Seattle,

Satya or VEGAN

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Hi Satya,

 

I'm delighted that you have joined Sclero Forums, but very sorry that it is because of your recent diagnosis.

 

Way too many of us know what it is like to not have any acknowledgement or acceptance or understanding of our diagnosis from family, friends, co-workers, and even doctors. I was totally dismayed by it when I was first diagnosed. I think a huge reason for it is that people simply do not respond the way we think they should or would, when it comes to illness issues. Although another big factor is the lack of awareness of scleroderma. Most people have no clue what it is, how serious it can be, or anything.

 

But most of us here know what it is like to be ill, and to encounter less-than-ideal responses. I know it hurts particularly bad when it comes to parents. Try to keep the focus on your own life and your wonderful activities and interests, since those who don't undertand will only serve to drag us down. And that is the last thing any of us need!

 

Warm Hugs,

 

Shelley


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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Hello!

My name is Jennifer and I am 40 years young. I have systemic sine sclerosis. I was diagnosed in 2005 but have had symptoms for at least 10 years before that. There was never much concern because the lung disease hadn't kicked in yet and I had no skin involvement, so all that time we just thought it was random sypmtoms that were treatable. Finally when the lungs became a problem, is when I went to the hospital. It took 3 weeks of being in ICU for the doctors. to figure out the problem. I have interstitial lung disease. I've been on disability ever since the diagnosis so I am a stay at home something. I am a newlywed and we have two adorable dogs that, in our eyes, are our kids. It's fun and it works for me!

 

A little about me...I was a hairstylist for many years, but retired as a deputy county clerk, as records manager. I am originally from Fayetteville, AR and grew up in Aspen, CO. I currently live in the mile high city, Denver! Some of you may know it as Bronco or Avs country.

 

I take Cellcept and several other pills to get through the day :). Cellcept seems to be working it's magic. The supplemental oxygen I could do without.

 

I am sure there's more to tell, but that's enough to bore you for now.

xo

Jennifer

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Annie, I just joined this forum and was looking around when I came across your first message. I was excited to see someone who lives in Green Bay, has Scleroderma and lung involvement. I to live in Green Bay! I have been recently diagnosed with Scleroderma and I am scheduled to see Dr. M. E. Csuka in Milwaukee in two weeks for a second opinion. I actually was diagnosed with Interstitial Lung Disease a year ago. The Scleroderma symptoms just started to appear in November (Raynaud's). I keep looking for answers and find there are few. I hope you respond to my message. I would love to get to know you.

 

Candace

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Hi Candace,

 

Welcome to the Sclero Forums. I'm glad you are here! I'm really sorry to hear about your recent diagnosis of scleroderma.

 

If there are any specific questions you have, please ask and we'll help you as best we can.


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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My name is Jane. I am 43 and have been diagnosed with linear scleroderma en coup de sabre. I have been married to my beautiful husband for three years. Between us we have six kids one boy and five girls. We live in perth western australia, well I say that because that is where my husbands job is based, but we live in a caravan and go where ever work sends us, but only in western australia. so really our home is where ever our caravan is. We like it best when we are near the ocean as we are mad fishermen. we have a boat and like to be out on it as much as we can. Its not as nice when we go inland like we just did, we just came back from doing a job inland in southern cross (near kalgoorlie )for four months. At the moment we are in perth which is great as I have an appointment to see my dermatologist on the 10th of august so he can see how things are going and one of my daughters is also coming with me as we think she may also have the same as me but fingers crossed I so hope we are wrong. Im still trying to deal with this myself and get my head around it and still not really understanding it never mind having to try and explain it to my daughter when I dont understand it myself. But anyway hopefully I won't have too. If there is anyone out there who has the same disease or anyone who has some answers to all the questions in my head, feel free to contact me. So far the only symptons I have is two long dents on my head that go to my hair line. somedays they are both there, somedays theres just one dent, sometimes they feel flat as like they have gone and sometimes they are sooo deep. they can change many times through out the day. Anyway enough of this I only came on to introduce myself but got a bit carried away but it is nice talking to people that know what I have. It was really strange telling my local doctor what I have and he has no idea what I was talking about, so here I am the patient trying to explain to the doctor what I have, it seems weird. I wish everyone well and hope you have a good day.... :)

 

take care

~jane~

 

diagnosis: linear scleroderma en coup de sabre

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So nice to get to know you Satya and Jane. Jennifer, it's nice to read a little more about you, too but it seems like I've known you forever. I look forward to running into all of you in other discussions.


Warm wishes,

Jefa

 

Carrie Maddoux

(Retired)ISN Sclero Forums Support Specialist

(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

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Hi I'm new to the forum , so thought I should introduce myself. I live in the UK ( N of England). Have been married 30 years, which is pretty good seeing I threw the wedding ring back at him the day after the wedding! We have 2 sons, both of who have just finshed university. I work full-time and am also doing PhD and don't seem to have much time for anything else, certainly not the house work!

Was diagnosed with Limited scleroderma last year - I was referred to the rheumatologist because routine blood test showed positive ANA and my doctor also thought my hands were a bit cold , and I received a diagnosis within ten minutes of meeting the rheumatologist! Can't get much more efficient than that. Could write lots more but its way past my bed time (its 11.30 pm here) and have to be up for work in 71/2 hours.

lizzie

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Hi, Lizzie, and welcome to the ISN Sclero Forums. I am so glad you found us, but sorry it is because of your diagnosis of scleroderma. It is always good to have another UK member on board. I look forward to reading more of your posts in the forums.


Warm wishes,

Jefa

 

Carrie Maddoux

(Retired)ISN Sclero Forums Support Specialist

(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

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Hi. I am new here so I will give you a quick summary. I am a 40 year old mother of 2. I have been married for 5 years. I went to my doctor about 6 weeks ago. He sent me to a rheumatologist because he thought I had RA. The rheumatologist took lots of blood and xrayed every joint in my body. He then sent me for an echo of my heart and a pulminary?(lung) test. He has now told me that I have Crest Syndrome. I feel very lost and confused. I really don't know what this is, what it does or what I can do about it. My rheumatologist explained it (sort of) but I guess it went over my head or maybe I just didn't want to hear it. But the things he told me, that I remember, didn't really sound bad, but I have started looking it up on the internet and it sounds alot more serious than he made it out to be. So now I am confused and scared about what comes next. Any help or information I can get will be greatly appreciated.

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