Examining life with a chronic illness. How to be your best while feeling your worst. DIscovering who you are and why anyone should care. Living to the max....and loving yourself even when you're not who you thought you'd be.
Tuesday, October 26, 2010
It's a constant struggle, to remain optimistic & hopeful ... especially on days like today. It took every ounce of my strength to shower & get dressed this morning. I managed to walk the dog but now the task of emptying the dishwasher seems as daunting as climbing a mountain. So it occurred to me that what I WAS able to do was to write...so here I am. The words don't always come easily. So I stare at the white page waiting for inspiration. Waiting for MOTIVATION. Waiting for this day to pass because maybe if I'm lucky, tomorrow will be better. And it usually is. And if it's not, I'll do what I usually do. Bitch a little, rest a lot & hope for a better day ahead.
Sunday, October 17, 2010
I'm so fortunate to be surrounded by a great group of friends. Some I've known since elementary/junior high/and high school days & others I've met only through the computer (lupus support groups, a.v.n. support groups, facebook!), some I've never even met in person. Wow, what a world! It helps tremendously when you're at your low points & someone tells you that they know how you're feeling or they can't imagine how you're feeling, but they're there for you. Powerful. The friends who have seen me through the worst of times have really gotten to know my issues. The best-laid plans are often distinguished by an unexpected 'lupus headache' or a sudden drop in energy, like say last night. I was supposed to meet up with friends after a crazy day of driving an hour to the airport to pick up my husband following a two day business trip, rushing to a family function, but as luck (or UN-luck) would have it, I was wiped out. I was anticipating that that might be an issue, but thought maybe THIS time I could manage it, somehow. I always think that I could manage it--or maybe I'm just *hopeful* that I'll have just enough in me to get through it all. I was supposed to spend the night (with said friends) and enjoy hanging out together for the day. But, here I am in my PJ's instead. And then within moments, my mind automatically goes to "Well, I guess it could be worse. I could be in the hospital"!! <sigh> It's helped me to cope. Knowing that things could always be worse really does put things into perspective because let's face it, even when we think we're in the midst of the worst possible scenario, there's always a situation BEYOND that could be SO much worse! So for example, when recently I was barely able to walk through the streets of Paris, I thought "Well, at least I'm HERE"...or..."It could be worse. I could be a parapalegic, so just make the best of it". Disturbing, perhaps--but it has helped me to cope. I suppose I learned a lot about coping from my parents, two tough individuals who survived The Holocaust. They taught me to be strong & resilient, not only through their words, but through their actions as well. So, THANKS Mom & Dad for giving me the tools to welcome every day (or most days) with a smile and an inherent belief that I can HANDLE it, whatever "it" may be! And Daddy, I see you in my dreams & hope you're in a better place. I miss you with all my heart.
Friday, October 15, 2010
The Beginning
OK. Where does one begin? At the BEGINNING, of course! So, I'll start by introducing myself. My name is Judy and I'm a 50 <ahem> year old woman (still getting used to that number), living a wonderful life with my wonderful husband. Our kids are grown and are living their own wonderful lives, what more could parents ask for? My life really IS wonderful. My husband just recently surprised me with a trip to Paris (for my 50th) and prior to that, our daughter had a beautiful baby girl! And if that weren't enough, our son just made his Broadway debut. WOW! So, wonderful, wonderful, wonderful! ON THE OTHER HAND...I'm living with many challenges, due to a chronic illness I've been battling for more than 32 years. I have Lupus, an inflammatory, autoimmune disease which affects my joints, my skin, my energy & my kidneys. It can affect any organ in the body and most often affects women, usually in their child-bearing years, (though not limited to). I was a senior in High School when I was diagnosed and by the time I was a freshman at college, the shit really hit the fan. I've been on chemotherapy twice (for months at a time) because my regular meds were not enough to combat the "lupus nephritis" which attacked my kidneys. My REGULAR meds in turn attacked my bones (hips & shoulder, so far) which is why I've had both hips replaced, my first surgery occurring when I was 28 years old. I could go on. But my focus is NOT the limitations put forth by my illness, in spite of the fact that let's face it: My life IS often determined by my Lupus; by how I'm FEELING, by how much energy I have or don't have, by how much PAIN I'm in. My quest is to accept the reality while striving to be the BEST wife/mother/grandmother/friend/and *beyond* that I can be. It's the *beyond* that I most struggle with. And that's what I hope to touch on in the days, weeks and months ahead...to learn how to fulfill my "artist within", this need to create & expand & feel like a productive individual--even within the parameters I've been given. And so, I've BEGUN!!!
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