View Full Version : Newbie Seeking Support

10-25-2006, 06:28 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, 07:22 AM
I'm close to your age, and I know how hard it is when the life you had seems to be slipping away from you, and you're not sure how to get it back. Your situation is especially hard because you don't the support of your family and friends. My siruation is a little different - I have four children and many family members who live close, so I sometimes feel a little smothered by the overprotectiveness, even though it comes from love and concern.

It can sometimes take a long time for plaquenil to kick in, so you may not be seeing the full benefits from it yet, but if it doesn't seem to be helping, it might be time to talk to your doctor about other medications like cellcept or imuran.

Do you think maybe it's time to let some of your friends know the "real you", the person who hurts, who is afraid, who isn't always the life of the party. I think your friends would like to know that person too, and there are many ways you can socialize and have fun without wearing yourself out. I know it's hard to reach out to other people for help - you don't want to impose on people, but I think you'll find your friends want to spend time with you, and won't really care if it's just delivery pizza and girltalk. Your friends may want to be more involved in your life, but be hesitant because they aren't sure how.

I also do a lot of work from home - it's great in terms of flexibility, but has the disadvantage of no co-workers around to trade ideas and proofread your work. I work in the legal field, and like you I worry a lot about errors because the consequences could be serious not only for me but for my clients. I try to work in small segments and recheck my work at least twice - I also do a lot of work at night because I'm a night owl and think better then. If you're having a real problem with daytime fatigue and inability to concentrate, you might talk to your doctor about a medication called provigil, which improves daytime alertness. Some people shouldn't take it, but you might ask your doctor whether it's appropriate for you.

And remember there are always people here to listen when you need to vent - sometimes a good online rant really helps!

10-29-2006, 03:26 PM
Aww i know what you mean about making small errors at work, that was what I was doing because of the stupid brain fog.

Are you on any meds for it?

Have u talked to your doctor about possible treatments for the brain fog?

Feel free to pm me if you need to talk or vent, I quit work last year and have applied for disability so if that ever becomes an option for you and you want to talk just let me know.

take care

11-06-2006, 01:52 AM
Hi GlassHalfFull,
Your story is so similar to mine! Except I'm 27 and hadn't had the chance to have a real career before being diagnosed (2 yrs ago). I was living in NYC - a very hard place to live with lupus (so much walking) - trying to follow a dream. Besides people I met at work, I knew only my boyfriend who I lived with but was never around due to opposite schedules. I ended up having to do what you don't want to do - move back home with my parents. It has not been easy by any means. I am fiercely independent and have had to let go of that. For us type A's, we basically have to change our personalities, go against our natural impulses. It's so hard.

It's great that you've realized that you can't do it all yourself and have hired help. But you need emotional help too. For me, that support has been critical. My boyfriend couldn't handle caring for me, but at least we both know it and have gone our separate ways. (I can say that now because it's been almost a year, but it was heart-wrenching at the time, even though it was necessary.) I think you should be up front with your friends about just how much you need their support. I have found it helps to be completely honest with everyone in my life so I don't feel guilty if I have to cancel plans last minute. Maybe if you educated your friends a little more they would realize how much you need their help? Setting a regular visit every week or every other week at your home? A therapist might also be a good idea. I see one weekly, and it helps to get an outside perspective. (Just know that it might take more than one try to find the right therapist for you.)

These are just some ideas and things that have helped me. I don't know what will be right for you, but I really do think having personal interaction and someone to talk to about everything you are feeling is an important thing. This website helps too! :)