View Full Version : Here goes...

09-23-2011, 06:58 PM
Hi All!

I have been reading these forums for about 1 year but have never posted (clearly I was in denial!) so here goes!

My name is Heidi- although I answer to Diva :)
I am a mom of 5 wonderful children and have been married to my sweetheart for 20 years.
My family is what makes me smile every day when I wake up!

I guess I am at the point of needing some folks that understand what I am going through.

I was "diagnosed" with SLE in November 2009. My Rheumy will say it out loud but for insurance reasons will not write it down...kind of funny, I guess.
I suppose they think the insurance companies are dumb!

I look forward to "chatting" with you all. I have learned so much already!

09-23-2011, 07:48 PM
Hi Diva,

I was diagnosed with SLE in 2004, though I can't remember what month anymore! Denial is nothing to be ashamed of. One way or another, I think we all fall into it sooner or later. I know I have.

It's good to have you here, and to talk to you. Make yourself at home.


09-23-2011, 07:55 PM
Hi Diva, and welcome. Thank's for "coming out" and introducing yourself. The thing with your doctor not writing down your diagnosis is interesting - no wonder you are in denial - I guess he/she is too LOL! I guess I wonder what happens when your records from that office go to your PCP or other doctor - is the whole thing hush, hush? Do you tell your other doctors that you have lupus? It's a pretty sad commentary on our healthcare system that you have to hide your serious illness from the company that is supposed to be helping you get healthier.

09-23-2011, 09:49 PM
Not having the diagnosis written in the file shows a doctor who is caring. Sadly once they write down an "official" diagnosis then you can be labeled as having a pre-existing condition and you can be denied insurance if you ever lose the one you have now. The moment Lupus and Seizures went in my medical I am now considered hi risk and basically in-insurable. I can't afford regular insurance but even if I could find the money tree a High Risk pool would be the only one that would take me. I would need 3 money trees for that!

Now that I have complemented your doctor let me take a moment and officially welcome you to the WHL family! I am glad you are here. It is really nice to be with people that understand how you feel through all of this. You were speaking about being in denial. Most people that have a long term illness go through the same group of feelings as they would feel if someone close to them died.

Denial (http://en.wikipedia.org/wiki/Denial) "I feel fine."; "This can't be happening, not to me."
Denial is usually only a temporary defense for the individual. This feeling is generally replaced with heightened awareness of possessions and individuals that will be left behind after death.
Anger (http://en.wikipedia.org/wiki/Anger) "Why me? It's not fair!"; "How can this happen to me?"; '"Who is to blame?"
Once in the second stage, the individual recognizes that denial cannot continue. Because of anger, the person is very difficult to care for due to misplaced feelings of rage and envy.
Bargaining (http://en.wikipedia.org/wiki/Bargaining) "I'll do anything for a few more years."; "I will give my life savings if..."
The third stage involves the hope that the individual can somehow postpone or delay death. Usually, the negotiation for an extended life is made with a higher power in exchange for a reformed lifestyle. Psychologically, the individual is saying, "I understand I will die, but if I could just do something to buy more time..."
Depression (http://en.wikipedia.org/wiki/Depression_%28mood%29) "I'm so sad, why bother with anything?"; "I'm going to die soon so whats the point... What's the point?"; "I miss my loved one, why go on?"
During the fourth stage, the dying person begins to understand the certainty of death. Because of this, the individual may become silent, refuse visitors and spend much of the time crying and grieving. This process allows the dying person to disconnect from things of love and affection. It is not recommended to attempt to cheer up an individual who is in this stage. It is an important time for grieving that must be processed.
Acceptance (http://en.wikipedia.org/wiki/Acceptance) "It's going to be okay."; "I can't fight it, I may as well prepare for it."
In this last stage, individuals begins to come to terms with their mortality, or that of a loved one, or other tragic event.

(More information on the stages of grief) (http://fibrofighter.tripod.com/17stages.htm)

Anyway. Please make yourself at home and, once again, welcome!

09-23-2011, 10:25 PM
Hey Heidi Diva!
Welcome to the forum :)
I'm glad you've come out of the woodwork to talk to us. While reading and hearing from other people is helpful, it's much more helpful when they're speaking to you and your problems in general, hehe.

Yes, many doctors hate insurance companies, and for the ease of the patient, will tell them they have Lupus, but then write it down as just an autoimmune disease. I suppose because Lupus can be quite serious sometimes, and Dr's dont want your insurance to go up, or you to have major problems if you switch insurance companies.

Still, it is hard, when they won't write it down on paper.

Congrats on being married a wonderful 20 years and having 5 kids, wow! (You know, it's funny, I wrote that at first as being "5 years and 20 children", woops).

It's understandable that you want to talk to people who understand - that's what has drawn everyone else here. That and their wonderful support and knowledge. Oh, and the cool animal names, of course ;)

The sad part is, no matter how hard our loved ones try, they simply can't understand or comprehend how much pain we are in or how often. Even the best of them. They can try to be so sweet and sympathetic and give you everything you need, but they just are incapable of comprehending. So it's nice to come here to talk to people who can, and do.

Anyways, just wanted to drop by and welcome you :) I hope you enjoy it here - being an actual posting member, that is * teehee *

09-27-2011, 04:33 AM
hi diva.

i too am a family person.
i have 2 children, 4 stepchildren, and 4 grandchildren.
i am almost 50.