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6 Months of Living with Lupus

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December 2, 2011 by The Lupie Chick

Wow, where did the time go? It has been 6 months since my lupus diagnosis. I had a doctor appointment Tuesday, and I was informed that I’m stable- not getting any worse, but thus far not any better. No reduction of the meds (bummer), next appointment Jan 4, 2012.

As I reflect on the past 6 months-it brings tears to my eyes. I’ve have several short stays in the hospital, many days/nights of pain, and depression. There were days when all I could do was cry.. ball up in my bed and cry. I see my doctor so often that I feel like we are dating. I know I’m a handful and I know I work his nerves. I’m always full of questions and comments. I just tell him straight- I can’t afford to do all of the things you want me to do! I know it sounds crazy that someone/anyone would say that they can’t afford to do something that may benefit them-BUT I can’t! I’ve made adjustment to my benefits at work (starting with getting the flexible spending account) in which I hope will help me financially with some of the things I need to incorporate. In the mean time, I’m doing the best I can with what I have. It has been extremely difficult for me to accept help. I’ve always been the care giver- not the one being cared for. I find myself ashamed of my appearance (because of the weight gain from the meds along with the scarring on my face). Ive had trouble with housekeeping and cooking meals sometimes-but THANKS to my children and my husband all of which have pitched in and got the job done when I couldn’t.

Some friends have hung in there with me and a lot have fallen by the wayside. That saying “out of sight out of mind “pops into my head. As long as I’m out of sight, I guess I don’t cross their mind(s). The other day my son’s step mother sent me a message on Facebook that said “you’re a fighter- I know firsthand” lol..lol.. That sentence made me laugh uncontrollably. The people that I least expect to hear from are the people that I’m in contact with. The people whom I thought didn’t care about me, have showed the most concern. For that I’m forever grateful.

November 20th my daughter turned 13 years old. Crazy me thought it would be a great idea to have a 3 day (weekend) celebration.

Pretty Girls Rock Party started Friday at 3:30pm and ended Sunday at 6:00pm. All I can say is a weekend of cupcakes, makeup, swimming, food, and dancing left me slaved to my bed for 5 days. I literally could not move. I had a conversation with my body and Lupus. I told them- “look I need for the both of you to cooperate and lean back this weekend. My mini me turns 13 once and I need to be there for her-if either of you act up, or show off there will be hell to pay!!!!!” My feet gave out Sunday afternoon, but all else was perfect!!!!! My daughter was so happy that I was able to participate and hang with the “girls” all weekend.

It’s been 6 months of living with Lupus. I’m determined to make the next 6 months much more enjoyable & pain free. I’m being forced to face one of my fears (water). It’s been demanded (by my doctor) that I begin an exercise regimen. It’s hard to imagine exercising when I’m in constant pain. I’m looking into water aerobics (to help with my joints) and yoga. I have an incredible fear of water (due to a childhood incident when I almost drowned).

I’m hoping that I can get back to wearing my stiletto’s shoes,walking without pain and leave the sneakers for workouts-not part of my daily uniform. I want to wear makeup when I want too-not because I feel like I have too (I’ve recently purchased the clarisonic brush-I’m already seeing results). I will also be doing a makeup over-a do over- a NEW ME!!!!!! So until next time Lupie Chicks-stay healthy and pain free!


** did you notice that my earrings match my jacket? I wrapped them myself using yarn**

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