So, there's this thing going around Facebook where you are supposed to put things in your "status" describing what you are thankful for. I don't really want to share those things on FB, but I will do it here on my lovely blog!
My sister is two years and one day younger than I am. She was my birthday present...or that's what she's been telling me for about 30 years! When we were young, we fought like crazy...over everything. I used to torture her about everything...if she came out of the bathroom with bangs, I'd question her...if she didn't, I'd question that. Just enough of a question to make her second guess herself...nice, huh? Yeah, I was that kind of older sister. I don't know why I did it. I'm sarcastic by nature, but maybe I just thought I was toughening her up for real life...be sure in your decisions and don't feel the need to defend them to any asshole who questions you!
When we were really little, everyone thought we were twins. Then, her height surpassed mine and everyone thought she was older than me. She was definitely smarter than I was academically, very musically inclined, and more athletic than I. She has a great group of friends and is fiercely loyal to them...even if they don't deserve it. Over the years, she has turned into my best friend. The person I call if I need to kill time, if I'm making a long drive alone, or if I just want to know if I should buy something. She doesn't see those calls as pointless or a waste of her time...she takes them and always helps me.
I'm not exactly sure when, but she was diagnosed with lupus and has been being treated for it. The treatments range, but always include pretty severe drugs. I want to say around the time I was pregnant, she started looking at her options for getting pregnant. The experts say that it's possible to get pregnant with lupus, but there are difficulties. The first (and probably most difficult) is going off all detrimental medications. My sister wasn't just going to go off the detrimental medications, but all of her meds. This made me nervous...not only did we not know how far her disease had advanced, but could she get sicker? Some of the medical decisions were made with her doctors and some were decided upon by her. She was ready and determined...just like always.
She went away earlier in this year for a conference. She had a really bad flare...leg rash, pain, fatigue, the rheumatoid arthritis was as bad as ever and by the time she got home, she was spent. She was put on a high dose of prednisone by her doctor and started to feel somewhat better...prednisone is a tricky drug though. As it treats some symptoms, it causes others. The most pronounced symptom in most people is swelling and weight gain. My sister is a beautiful woman...tall, clear skin, no wrinkles, shiny hair, sparkling smile, and gorgeous blue eyes. The weight gain was going to be tough on her, but she'd do anything to get this flare under control. Her knee started to hurt and she pushed for an MRI...her doctors attributed it to the arthritis.
She suffered (and I'm not being melodramatic) through the summer having a face that had doubled in size, needing to find special shoes to contain her ever-swelling feet, buying pants that were not even close to her regular size...all as a result of the swelling from the predisone. The thing about this drug is that you can't just stop taking it...you need to wean down very slowly or you could go into organ failure...just what a lupus patient needs, right? I felt so bad for her this summer. All she wanted to do was enjoy life...play with the babies, take lots of pictures, enjoy her vacations, have BBQs, and live like a semi-normal person (people with lupus can never live normally...that's something I've come to learn). She couldn't do any of that. As a matter of fact, she started to live even more carefully! She started a vegetarian diet, therapy, and acupuncture. The flare subsided a little bit, but there are lasting effects. She has very little use of her right hand, issues with her left hand, she is still limping, taking stairs one at a time, needing help in the shower, having issues getting dressed, having trouble keeping up at work, and still dealing with the fact that she wants to have a baby.
Recently, after going back on all of her medications (that was a punch to the gut), she has decided that having a baby is not going to be the best thing for her...as a matter of fact, it will ruin her. If she needs to go off of these medications again, I don't know what will happen. She has considered surrogacy, but in order to get her eggs, she has to get off of one of the most toxic medications for 90 days and I don't think she'll make it. It's too traumatic. So, she and her husband are dealing with this loss and still trying to live everyday life. I don't know how she gets out of bed every morning. She laughs when people tell her she's so strong because she is physically the weakest she has ever been. She is going to acupuncture regularly and I think it's helping...only time will tell. I am so glad she's seeing a therapist because this is such a mindfuck. She is doing everything she's supposed to be doing, but it's a slow road back.
I think the thing that gets her the most is that she didn't realize how sick she was. Lupus is a disease where the person can look healthy, and she looked incredibly healthy, but still be very sick. One of her medications is used for chemotherapy!!! That blew me away! I am so hoping that she can get this under control really soon. She lives such a great life and needs to get back to it. I'm sure this has thrown her marriage into a tizzy because on top of dealing with how sick she is, she can't do much around the house, she's too tired to do some of the social things that she loves doing, and sex? Forget about it (sorry sis...I'm trying to be as honest as I can though). They work on it, but her husband travels...a lot. I just wish I were closer geographically so I could help her. The other reason I wish we were closer is because she is an amazing aunt. The kids absolutely love her and her husband. I think it would be wonderful for them to spend more time together and I also think they make her happy.
So, that's who I'm thankful for today. She's an amazing woman and I just want her to find happiness. I also hope that she's not sitting at her computer with tears streaming down her face because it takes a lot of effort for her to get mascara on with her left hand! She started a blog to get some of her feelings out (link below). I know she's not completely honest on it because the complete honesty would freak some people out...she shared it with family and friends and finds herself (as I do) censoring some of the content. All of those who have suffered from infertility (as I have) understand the loss that she is feeling. All of those who have loved someone with a chronic illness will understand how scary this is. All of those who know what it means to love someone more than you love yourself will understand how much it kills me to see her go through this and how much I want to drop everything and move in as her nurse/maid/shower buddy/entertainment/chef/landscaper/decorator/door answerer/car starter/manicurist/makeup artist/hair stylist/dresser/shoulder to cry on every day. I love you!!!!!
Here is a link to her blog if you're interested...now you'll excuse me if I go reapply my mascara...with my left hand...oh, who am I kidding? I can't do it with my left hand!