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chas
02-16-2009, 06:38 PM
Hi I am Chas. I have had a bad year of illness, chest infection after chest infection followed by skin rashes on torso. Finally after the last infection of August 2008 I did not sleep for months and thought I was crazy. I was diagnosed with hyperventilation syndrome - which is a nice way of suggesting I am a hypochondriac who breathes shallow in panic and gets dizzy because of it. Thankfully blood tests revealed auto immune issue (320:1 homogeneous) but negative for further testing. (latest test is 160:1 speckled - still negative further testing)

As yet I am undiagnosed - my rheumie said she cannot diagnose me with Lupus - YET - but they had to be vigilant as I have this permanent blush on my face. They are more concerned with the renal failure or organ involvement of lupus as opposed to my insomnia, dizziness, joint pain, fatigue and anemia. (also vit. D deficient) I am okay without a diagnosis in some ways as it allows me to believe it may not be permanent but in other ways I would rather have a plan as opposed to a hope. I have learnt to manage my illness - by tempering activity with rest, avoiding the sun and taking supplements but part of me wants to go for broke - live normally and see what happens. I am having a better year this year by being careful and it is a better place to be I suppose but living on the fringe of an illness is difficult for people to understand let alone support.

Angel Oliver
02-16-2009, 06:45 PM
Hello and welcome.I am sorry to read you have been so sick and i wish this year is a better one for you. Yes the diagnosis thing is frustrating, but i hope you get one soon and the doctors look after you. I have M.E/Asthma/AReflux/IBS/insomnia/depression/anxiety. Nothing is in your mind and you are not going crazy even though i know sometimes it feels that way. You have found us now and we'll help you on your journey of life.We know the ignorance of some people and you'll find allot of understand and love here. If theres any questions you need answering, just jot it down and many people will come and see if they can help you. I hope you know ''you are not alone'' :)

love and gentle hugs
Angel.xxxx

chas
02-16-2009, 06:53 PM
Hi Angel, Thanks for warm welcome. I have one question - why is your name followed by the words Senior member - Rabid Pit Bull? Mine has junior member and then this:Beloved AdminNewbie AlertModeratorMember Booted - Has this username been used before?

mountaindreamer
02-16-2009, 07:14 PM
hi chas,

these new names are a hoot for all of us. The new format for the forum has each of us guessing at the rhym or reason for the names. I guess these are assigned by the admin., and they change according to the number of posts.

Hope your year goes better....believe me, going back to living like you did does not work. Keep up the good work ...and take care of yourself.

Angel Oliver
02-16-2009, 07:16 PM
Hey ive just changed to a Rattlesnake sssssssssssssssssssssssssssssssssssssssssss lol :)
This site has just been updated yesterday i think so its all new. I was on the old site and joined a few months ago...so im a senior member lol aged 39 :) So the more you post you'll see your named change e.g i was a pitbull but im still posting so im a rattlesnake. Maybe because you are a newbie the system has rebooted and thats why it says what it does. Think thats right anyway lol :)

Love
Angel
(Scary Rattlesnake ssssssssssssssssssss lol :) )

Oluwa
02-16-2009, 07:19 PM
Chas...welcome...hugs.

I think that is an error...a kink in the system why it lists that under your moniker...Beloved AdminNewbie AlertModeratorMember Booted. I left a post for our Beloved Admin Conrad to check it out...

You will find wonderful support here..we all understand and someone is always a stroke of your keyboard away.

Read about, make friends...

A new forum format started today, so we are learning too how it goes..

Keep well...Enjoy your evening..
Love,
Oluwa

Rastagirl
02-16-2009, 07:22 PM
Hello Chas....

Just wanted to welcome you as well. Glad you decided to join us. We're always happy to have a new face and words around here.

I think I may be able to answer your question....the 'Senior Member' looks like it's preprogrammed, maybe by the number of posts you've made, because I see some members who don't have many posts, with the 'Junior Member' status.

.....and the 'Rabid Pit Bull', or in my case, 'Puppy' is also pre-programmed with these fun names that change as you reach different numbers of posts. I was an 'Alley Cat' for awhile and just changed to 'Puppy' when I hit 200 posts today. You'll notice that our Moderator, Saysusie, is at the top of the heap with 'Emperor of the Solar System'.

I may be wrong on this, so someone feel free to jump in and correct me if so.

Anyway, I'm glad you shared with us. Looking forward to your future posts....

Fondly,

Lori :)

rob
02-16-2009, 08:25 PM
Hi Angel, Thanks for warm welcome. I have one question - why is your name followed by the words Senior member - Rabid Pit Bull? Mine has junior member and then this:Beloved AdminNewbie AlertModeratorMember Booted - Has this username been used before?

I think that alertmoderator all run together heading is a glitch. Hopefully it will be fixed in a day or two.

Welcome to our group Chas.

Rob

chas
02-16-2009, 08:49 PM
Okay fierce poodle!!! Glad to know you did not choose that name. I am now guessing quick reply does not insert your post into relevant conversation but adds it to the end. Thank you all for warm welcome. I am a believer Rob - it is the only way to be sure.

mountaindreamer
02-16-2009, 09:14 PM
hi Chas,

no kidding. I will be glad when I move past this name. Also, I am called a senior member. I am 56 years old, so this may be referencing my age. I have been a member for only 2 months, but I guess it could be referring to my time on the forum. It is nice to find some fun somewhere.

Saysusie
02-16-2009, 10:47 PM
Hi;
I am Saysusie, Moderator/Administrator of this forum. Do not fret too much about the name. As Rob and Oluwa explained, it will probably be quickly corrected by our Beloved Administrator, Conrad! That type of fix is a bit out of my Administrator capabilities (lol).
I am glad that you've already been warmly welcomed by our members and that they have been able to put your mind to ease about some issues. We have all had to work very hard at modifying our lives so that we can manage this disease. We are always here to help you to do that and to provide you with information, answers, and most of all, support. Welcome to our family.

Peace and Blessings
Saysusie

KathyW1958
02-17-2009, 07:35 AM
Hi Chas,
Welcome to the site. I am sorry to hear the way that the doctor treated you. I think it is disgusting when doctors act like this. You said that you have the speckle pattern ANA. Have they looked at the possibility that you may have Sjogrens as well as Lupus? Do you have a problem with dryness in your mouth and eyes? Have they done a test to see if you are SSA or SSB positive for antibodies? I am just wondering is all.

I think the names are related to how many posts you make and not so much on age. If it were the age thing I would be a senior too due to that as I am 50 years old.

Well I just want to welcome you to the site.

Hugs,
Kathy

chas
02-17-2009, 11:51 AM
Hi there, They tested for ANA and if positive they test for the other SSA /SSB? stuff - which were all negative. I do not have dry eyes or mouth and in fact if I rest all the time and dont go in the sun my symptoms are kept to a minimum. Exertion increases them but not if I space out my activities. I am not actually sure that I have Lupus - the only defining thing is the blush on the face that never goes and came out from a bout in the sun over summer. Yet if I treat myself like I have Lupus I improve dramatically so -what can you do? The main thing for me is avoiding the sun - wow the joint pain reduced by 90%. So I am joining the lupus club!!

Saysusie
02-17-2009, 12:53 PM
Not the most sought after club in the nation, and membership is on a non-voluntary basis. Our members have qualifications (aka: symptoms) that range from merely fatigue to life-threatening organ dysfunction and we span the globe. It is an ever-increasing club whose membership seems to be increasing exponentially.
We are trying very hard to get the news about our club out to the general public so that they will better understand who we are, what we are about, and how membership affects our lives and the lives of those who care about us.
This particular branch of the club (WeHaveLupus) is one whose members are amongst the most knowledgeable, caring, supportive, and understanding group that can be found in any of the Lupus Club global membership.
Even without an official diagnosis, we welcome you here and want you to know that you are never alone. We are here to help you in any way that we can and for as long as you need it. We also look forward to your participation and we know that everything that you can add to our branch will be valuable.
So, again....Welcome to the Lupus Club!

Peace and Blessings
Saysusie

chas
02-17-2009, 01:26 PM
Seems the only gatekeepers to this club are the medical profession. You get those docs who are over eager to diagnose and those that only want to know when you go into organ failure. I read an article by a woman who said that doctors can treat 80% of Lupus symptoms - especially the symptoms that are life threatening , but the last 20% of symptoms that affects quality of life (insomnia/fatigue etc ) is not really the priority when it should be important. So this is a mentally insidiousness disease with continual reminders that your body is at war. I found it quite stressful not having a plan or even an idea - no one can explain my raised ESR, CRP, ANA but as my organs are good and my symptoms are not debilitating enough - then it seems we wait and see. Yet every day I feel confronted by symptoms that the medical profession cannot explain. Today my thumbs have packed up. They will be fine by tomorrow perhaps - no big deal for doctors, a big deal for me trying to open a jar for my son this morning. It can do your head in if you subscribe to the idea that nothing is actually wrong with you - nothing definitive that is. So I am gatecrashing this party because we seem to share some common ground and regardless of whatever final diagnosis I receive this looks like the place for me.

mountaindreamer
02-17-2009, 03:26 PM
hi chas,

w#1ow, i just wrote this really nice welcome, and before posting, I hit the wrong key, and everything was gone....oh well, I will try again.

I agree with you, no matter what your diagnosis is, I believe you belong here. We have members who were first diagnosed with lupus, then the diagnosis was changed. I was diagnosed with fibromyalgia 13 years ago, and only this past October was lupus added. If I had only sought this forum prior to diagnosis, I could have avoided many years of lliving with lupus without any help.

Membership in this group teaches you to be your number one advocate....and to have confidence in this advocacy. I can not begin to list everything that I have learned....today, I even learned how to play a new arcade game. ha ha ha

Anyway, welcome and enjoy our humor
phyllis

lmangusrn
02-25-2009, 06:57 PM
I wanted to welcome you also. I also think the names are goofy and funny and as Rob has told me in other posts they reason for them is highly classified. What a goof he is. Then later I found out that the admin staff assign the names and they cahnge after so many posts.
I just wanted to say hello and that this is a great place to be and great support form the people who really know what you are going through.