Newbie Seeking Support
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....
Welcome! I think you will find this group a Godsend--I know I do. There are so many absolutely brilliant people here...in research, in counseling, and just in being there when we need each other.
I love your nickname--and that's exactly how you must approach living with this disease. You sound like you are strong and independent. These characteristics will help you greatly in your fight with Lupus. And it IS just that--a daily FIGHT! A positive attitude insures that you win more fair days than your "share."
There are so many terrific people here who can answer practically any question you've got about symptoms, treatment, research, etc. with regards to Lupus. MaryCain is a favorite of mine. So is SaySusie. Frankly, everybody here is pretty fantastic when it comes to helpful hints or just understanding when we vent. I see myself as a comic jester from time to time, but I come in here and bawl like a baby when I need to.
I guess what I'm trying to say is, this is a very practical site, but a very emotionally supportive one, too. Welcome!