View Full Version : Newbie seeking support

10-25-2006, 05:58 AM
Hi, my name is Anna and I was diagnosed with Lupus this summer. I feel so many conflicting emotions and am trying to maintain a positive outlook, but it is so often difficult. Before I got sick, I lived in NYC and had a successful career in the financial services industry, a fun dating life ala S&C, was training to compete in Ballroom & Latin dancing and an active social life fundraising for various charities.

Now just getting through each day is a major accomplishment. Sorry for the major pity party here -- I do generally try to live by my handle - GlassHalfFull (as opposed to empty) but it is getting harder and harder...

There is a local lupus chapter, but none of the support groups meet anywhere near me, and my friends just see the good face I put on for all of them and have no idea how bad things really are. Being so fatigued all the time, I have no energy to go exercise or get involved in groups to meet new people.

I live alone, and I telecommute from home for my work. A blessing in terms of flexibility, but a curse in terms of human contact. It's tough enough to schedule time with my friends (who are all fellow type As) particularly since I recently moved away from where most of them live. Also I have no family in town -- they all live very far away. Moving is not a option right now financially.

Ergo my joining this board looking for support.

I am fortunate that right now that all my major organs seem to be doing fine -- I have the monthly tests due to the aggressiveness of my counts. However, I am having some gastric problems off and on (not related to the Plaquenil they have me on) and major issues with arthritis and other pains (have also been dx with Fibromyalgia & Sjogrens) plus Lupus Fog and insomnia.

I have a cleaning service, yard guy and someone to help with the cooking -- expensive but necessary at this point. Hopefully I won't need all that forever. Chiropracty and accupunture seems to be helping with my moods and calmness -- too early to tell on the meds impact yet.

I generally roll out of bed and spend what good hours I have (off and on) getting my work done -- Then I just sleep or zone out. Although the fog has made work more difficult lately, and I have been making stupid errors that would cause me to lose my job if they continue.

My company has been supportive, but we are tiny (under 10 people) and that can't continue indefinitely. I worry constantly about reaching a point where I can no longer support myself and have to turn to my parents, who I love dearly, but are very controlling. I'm 43 and feel like a fractious teenager... I hate that.

Any constructive feedback is welcomed....

10-25-2006, 06:57 AM
Hi Anna. Welcome to this forum. You will like it here. There are a lot of nice people here that are very supportive. Marycain is real nice. She is very knowledgeable Autoimmune Disorders.

I have SLE and got dx about 12 years ago. I have been on medication the whole time after I got diagnosed. It takes about 6 months for the Plaquenil to really kick in real good. You did not say if you are on Plaquenil, but I assume that you are as that seems to be a drug of choice for the treatment of Lupus. Once your medications start working really good for you, you should begin to feel better. Lupus is a hard illness to live with, but you will have good days and bad days. I wish you the best and it is good to see you here.


10-25-2006, 07:24 AM
I replied under your other post, so won't repeat myself here except to echo Kathleen's welcome.

10-25-2006, 07:33 AM
I look forward to to being a participative member -- hopefully this will be it for a bit on the venting front -- now I can move on to the educational piece. I've read a great deal -- although I'm not sure how well I'm processing it.

It will be interesting to hear the perspectives of the real patients. For all that one reads on various web sites -- I still feel like I have more questions than answers ....