The Lupus Forum banner

1 - 6 of 6 Posts

·
Registered
Joined
·
4 Posts
Discussion Starter #1
My name is Tish, and I was diagnosed, with severe discoid lupus in 97, I have
lost all the hair on the top of my head completely and permanantly, and have bad scarring from past lesions and flares, I wear hats, scarves, and wigs, and can glue hair on when I'm not flaring, which is when I look most normal, but this is an exhausting process, and I don't have the energy to maintain the way I use to, I was tested every couple of years for SLE and last year had my 1st positive ANA test, which is when I decided I might need some support.
I have also been diagnosed with raynauds, and fibromaylgia,I have high blood pressure, and do have new stuff going on this year, I am on prednisone, cellcept, 2 blood pressure meds, lyrica, and have been taking something for sleep the last few months, I am also now on pain meds everyday,and am suseptable to infections, mostly bladder, and chest. I grew up in B'ham, Al. and was in the US Navy in the early 80's. trained in Telecommunication, and Satellite communications, got out, and took a couple of years of electronics,computers, and worked in the communication/computer field, I have a 18 yr old son, and a new 2yr Marriage, to a very loving and supportive husband, although I don't think he really new what all he was getting into with me and my son, and my Lupus.
We recently moved to Lousiana to be closer to his Son, and Daughter and Grandkids. So I don't know anybody here, except my new doctors, and I don't get out much anyway, since I am so UV sensitive, and by evening I'm extremely fatigued, I have been on Disability for 3 yrs now, and my social life has diminished, so I have been seeking out online support groups, to find others to relate to, and hope to make some new friends. thanks for being here!:)
 

·
Registered
Joined
·
4,444 Posts
Welcome to the site! You'll find lots of friendly, helpful, empathetic people here. Great place for support and information :)

Sounds like you've really been through a lot recently, I hope the newer meds will help you soon. Kudos to your doctors for keeping a close eye on you and being open to the possibility of more systemic involvement after more than a few years. I am wondering why you are not on an antimalarial like Plaquenil though as it can really help those with skin involvement, and sometimes a second anti-malarial is also added.

Welcome again, looking forward to getting to know you better. Perhaps I'll see you in chat some night! Take care...
 

·
Registered
Joined
·
1,613 Posts
Hi Tish :hello:

First of all :welcome: to the lupus site, i hope you find it helpful and you manage to make lots of new friends here.

I have found this site so helpful since i joined a few years ago.

I am glad that you have a new loving husband as been alone is no fun especially when we spend so much time at home. It would be nice to find some new friends in Lousiana, fingers crossed you manage to find some.

I hope you enjoy been part of this great group.

Take care :hug: Jo :hug:
 

·
Registered
Joined
·
4 Posts
Discussion Starter #4
Thankyou for the warm welcome!

Maia;494108 said:
Welcome to the site! You'll find lots of friendly, helpful, empathetic people here. Great place for support and information :)

Sounds like you've really been through a lot recently, I hope the newer meds will help you soon. Kudos to your doctors for keeping a close eye on you and being open to the possibility of more systemic involvement after more than a few years. I am wondering why you are not on an antimalarial like Plaquenil though as it can really help those with skin involvement, and sometimes a second anti-malarial is also added.

Welcome again, looking forward to getting to know you better. Perhaps I'll see you in chat some night! Take care...

I do have some stressful things happening in my life now, and not quite sure what my new limitations will be, I know some will remain the same, and they were hard enough in the beginning, expecially the no sun thing, but we do, what we have to do, I was on plaquenil when all this 1st started but it didn''t seem to do all that much for me, the prednisone was the best at that time, but I really like the cellcept! now! but who knows I may try it again, as this is a new Rhemy and a new diagnoses, But I know with the strength, support, and prayers, I can do this, and I hope to help others to, We all need a Purpose! Thankyou again for being here!
 

·
Registered
Joined
·
4 Posts
Discussion Starter #5
Thankyou for that!

bugsy;494115 said:
Hi Tish :hello:

First of all :welcome: to the lupus site, i hope you find it helpful and you manage to make lots of new friends here.

I have found this site so helpful since i joined a few years ago.

I am glad that you have a new loving husband as been alone is no fun especially when we spend so much time at home. It would be nice to find some new friends in Lousiana, fingers crossed you manage to find some.

I hope you enjoy been part of this great group.

Take care :hug: Jo :hug:

It, sounds like such a wonderful group, I hope very much to give, as much as I get here, This was soooo needed in my life right now! And I'm so Grateful that you all are here, I truely believe, this can only enhance and improve the quality of our lives,,,,We all need a purpose,,,,,,Tish
 

·
Registered
Joined
·
7,800 Posts
Hello Tish and a warm welcome to you!

It does certainly sound very difficult to deal with everything that you have been through over the last few years :(

I'm happy to hear that you have such a supportive husband - I'm sure none of them really know what they've let themselves in for :) lupus or not :hehe:

I know what you mean about being far away from people you know. I've been over here in Belgium since I was 18, so have lots of good friends now but I do remember it being soooo lonely in the beginning - and I didn't have a pc then!!

I have found this site to be a wonderful source of support, advice and friendship. I hope you do too,

bye for now,
Katharine
 
1 - 6 of 6 Posts
Top