May Is LUPUS AWARENESS MONTH!

Yes, May is LUPUS AWARENESS MONTH, and I apologize for missing this whole month! Not wanting to solicit any pity, but I've been sick for most of the month - what a cruel trick for LUPUS to play on me, right? Oh the irony, lol!

But I am finally coming out of my 'Chemo Funk' (Cytoxan/Ritixan) and rushed right to my laptop to get at least one post in. 

 i HATE those hospital gowns!

So this time I'm not going to run off all the many statistics about LUPUS, who it affects, how it manifests, etc... There's so many sites that already are doing/have done a marvelous job at that. I'm just going to remind you all  that there really is someone you know that does actually have LUPUS. That there are so many of us out there that are struggling with symptoms, seeing doctor after doctor with no real answer, some even being told that "it's all in your head", not even realizing they could have LUPUS. Can you imagine? 

So, I'm not going to get all into that in this post, especially since I've missed most of the month - I'm just going to remind you that some you know has LUPUS, and that they need you to reach out to them, in any way you feel could be useful, helpful. That would mean so much to them.... Trust me!

be well friends

ang :)

ps... you can now count on regular posts from me going forward, with lots of interesting thoughts and info. stay tuned my friends!

There's Help Out For...

Hey there!
I was surfing the net the other day and stumbled upon some info about this organization called HealthWell Foundation that helps fellow Lupies with the cost of our medications. I'm so happy to know that this is available because I know that that's a big issue for us, and there's little to know help out there specifically for those with Lupus. Actually, this is one of the main reasons for my starting my own foundation to support those with Lupus - The Butterfly Project for Lupus - and one of the primary programs for it is a medication assistance grant.

Many of us Lupies know that, other than prednisone and plaquenil, most of our medications are 'off label', meaning they were created, prescribed, and intended for other diseases but are used for Lupus. Take Cytoxan for example. It's a chemotherapy drug created and used mainly for those with various types of cancers. However, it's becoming more widely used for those with Lupus to help suppress the immune system.

Among other things, I have the Lupus Anticoagulant Syndrome, plus platelet issues, so I'll be on an anticoagulant Luvenox for the rest of my life. This drug is $798 per month, and that's AFTER my insurance kicks in it's 70%!! So again, I am SO VERY glad that something like this exists out there exists for us.

So check them out, here's the foundations press release about the program.

Be well :)

I've been away...

Yes, I've been away and I'm sorry. I've been a bit under the weather lately along with trying to figure out how to juggle my life while being 'sick'. have any of you figured that out yet? if so, please share, lol!

i just realized that i never really introduced myself, my story. yes, i've added a link to my primary personal blog, where i talk about my life. but what if you don't want to click over? so here's a quick run down on me:

i'm angela, a young, married 40-something mom of a beautiful 9 year old daughter, whom we call 'ladybug' and is the joy of my life. i live in the san francisco bay area with my family where i run a small financial and small business services firm with my beloved dad, who's, along with my dear hubby, one of the best guys i know. i am also a certified life coach (coachangela.com) and have been practicing for many years now and i thoroughly enjoy what i do!

about 5 years ago is when i was diagnosed and was lucky because the it came fairly quickly - about 4 months! however, i was near death. i have several other autoimmune diseases in addition to LUPUS, but also of course, related to it. I have pulmonary fibrosis, vasculitis, mixed connective tissue disease, undiagnosed MS (if there's such a thing, right?). this disease affects my heart, lungs, bones, muscles, and brain and i suffer from seizures. my official LUPUS diagnosis is CNS/SLE.

**update 2/2012 -- i now have the LUPUS anticoagulant clotting factor...sigh **

basic duties like getting dressed, cooking, taking a bath, walking, playing with my beloved ladybug are all challenges. my muscles atrophy overnight, and if i sit too long i get incredibly stiff. pain, as all you dear Lupies know is a constant. a few years ago, i suffered a seizure and fell down the stairs after just dropping my daughter off to school. i lay unconscious til a neighbor found me. once at the hospital it was discovered that i lost my memory, couldn't walk or talk, and suffered from aphasia (where your comprehension is practically non existent, your word finding abilities go out the window, and you decided to call everything 'sausage').

yes, i've come a long way, but still suffer from true short term memory loss, which frustrates the heck out of me, along with the loss of some independence and control,and it's quite difficult being a Type A personality and all. (smile)

so there's a quick run down of my story. another important piece is that i am one stubborn so-and-so, but in a good way. i like to do what i want to do, when and how i want to do it. and i almost always find a way, or make my own. sometimes it gets me into trouble. and there have been times when it's saved my life. i drive my doctors crazy because i don't and won't take what they say at face value, but they and all the nurses love me because i do respect and value what they do.

well, i don't want to go on and on. but there you go.

please know that i am back, and here, and you can expect at the very least weekly postings. i will be doing polls, asking for suggestions, personal stories, home remedies, pictures, etc.. i really want this to be YOUR site too.

thanks again and be well.

angela :)

The Fight Goes On...

Well, we've come to the end of LUPUS AWARENESS MONTH, and I wanted to give you some insight into my journey, and fight, with LUPUS. LUPUS is an awful disease that has no cure and, in its worst form, is just as devastating as cancer, and this may sound crazy, especially because we think of cancer as this alpha/omega of diseases, but i spend a lot of time with cancer patients because my LUPUS is so severe that I'm treated as though I have cancer, and I find that my LUPUS (and the LUPUS of many others I know in this fight), is just as bad, although there's no definitive proof of this and not to deminish the seriousness of cancer.

My LUPUS causes so many problems for me, way more than the other diseases. it affects my heart, my lungs, my muscles, my brain. i have other issues with these same organs (pulmonary fibrosis, vasculitis, MS, mixed connective tissue disease), but the LUPUS is all encompassing, ever reaching. It's a thieving leech that has taken so much from me. It keeps me from driving, working 'officially', making and keeping engagements - both personal and professional, from crafting and cooking, from doing things with my ladybug, my friends, my family, and myself. It keeps me from finding my words and understanding those spoken to me, from keeping up with and enjoying my favorite tv shows and books. It keeps me from strutting around in my favorite pair of 3 inch heels and hanging out in the sun for as long as I want. I never know how I'm going to feel, or be every day that I wake up, and from hour to hour. I'm in constant, constant pain... pain that you can never get use to. On a scale of 1-10, with 10 being the worst ever, 6 is a good and regular day for me, and then the seizures.....

It's unpredictable nature keeps me from counting on myself in a way that's just so basic to most people, and I can feel it slowly yet aggressively trying to take away from me my confidence and my audacity to truly LIVE in spite of it. And I hate it. I hate what it's done to me, my body, to those who love me, to what it continually tries to do to my life.

This is a horrible and insidious disease that has no cure and can kill. It strikes (mostly) women from all backgrounds, races, and walks of life in the prime of their lives - as they're just finishing school, staring a business, a family, a new relationship, an exciting career or adventure! LUPUS is a treacherous and thieving disease that steals the best parts of our lives. This disease turns lives upside down and havoc descends, yet there's little to nothing in the form of support, resources, and major awareness out there for those suffering from and living with LUPUS. Especially in the medical community - so many go mis or undiagnosed.

Because of this, and my own frustration with the lack of services and programs for those of us struggling to truly live with LUPUS,  I've started THE BUTTERFLY PROJECT FOUNDATION for LUPUS (TBP), and my goal is for this to become a national organization. We are currently registered as an exempt non profit corporation here in California, and are awaiting our federal exemption status at a 501(c)3.

May was LUPUS AWARENESS MONTH, and someone you know has lupus. please donate and find out more about how you can help those of us with LUPUS by going to www.lupus.org 

 I'll share more of my personal journey with LUPUS in posts to come, so please stay tuned!


Angela :)

But You Don't Look Sick...

 hello friends

I walk with a cane most of the time, but sometimes I have to use my walker, or my wheelchair. The responses (reactions really) I get are interesting, and always about the same - "how'd you hurt your leg?", or "you're too young for that walker", and "What is someone so young like you doing in a wheelchair?! The comments usually aren't too bad, although there is the occasional bone-headed remark. But what's most disturbing, for me, are the looks, the expressions on peoples faces. They run the gamut from pity, to embarrassment, to disgust.

i have a port because of my vascular disease

When someone gets the nerve to actually ask me why I'm using a cane/walker/wheelchair, which is often actually, I just tell them I have an autoimmune disease called LUPUS and how it affects me - that it's difficult for me to walk, that my muscles have atrophied, and that my balance is horrible because of it. Their response is almost always - "BUT YOU DON'T LOOK SICK?!".

i'm never without my trusty laptop!

Now I know that people mean no ill when they say that. They have no idea how often people with Lupus hear that, and how much it bothers us. It bothers us because, although we may not 'look sick', we feel sick, because we are sick. It bothers us because the way we feel doesn't match with the way we 'look'. And because of that, many doubt us. Many of us may not 'look sick' to others, but they don't see our pain, our achy and swollen joints, how hard it can be to do simple things like dressing ourselves, or our 'lupus fog'.

this is part of the space suite the nurse wears

Because they don't, or can't see these things, us Lupus Warriors can see the doubt in their faces. And that sometimes makes us question ourselves, and we begin to feel alone in this fight no one can truly understand and empathize.

say's it all...

It's hard living with Lupus, but there is support out here. You are not alone. If you feel you are, then please contact me, I want to hear from you, and maybe we can help each other.

be well my friends,
Angela :)

The Spoon Theory

MAY IS LUPUS AWARENESS MONTH

LUPUS is a mysterious disease, and in a ways, at least to me - a fascinating one. it amazes me that one can be sick, truly sick with multiple issues, even organ failure, but still look relatively 'ok'. which is one of the reasons why LUPUS is so often missed, or caught years after initial symptoms appear.

again, it's a mysterious disease, an unknown is what we're dealing with - you never know how you're going to feel from day to day, sometimes, hour to hour. it's already hard to function when you're sick, especially when dealing with an unknown, a wild card like LUPUS, but so many of us LUPUS Warriors do. we work, attend school, and we try hard to have social lives, but often, we have just enough energy to make it through the basics - work and school - with little to no energy left for friends, extra curricular activities, and many times even family.

that's why we LUPUS Warriors must be selective when managing our time and commitments. each activity, no matter how big or small, takes alot out of us - getting dressed, taking a shower, sweeping, vaccuming, combing my daughters hair, going on a school field trip with her or one of her track meets, talking to clients,  spending a few hours at the office, meeting a friend for tea, scrapbooking or crafting. you'd be surprised at the amount of seemingly innocuous, meaningless decisions and preparations that must be made just to get through the day. so yes, "selective" is the key word.

there's an interesting way of explaining the whole process many of us LUPUS Warriors must go through day to day to get through the day. it's called the SPOON THEORY created by Christine Miserandino around 2003. it speaks of how at the beginning of each day you start out with a certain number of spoons, and each activity, no matter how small or large, 'costs' a certain number of spoons. cleaning the house may cost 4 spoons whereas laundry may cost 2, and maybe you started out the day with 10. some days you may be able to 'bank' or save some spoons by just not doing anything. but that would probably be able to happen if you're weren't having a 'flare', which is when you are truly feeling horrible, achy, swollen joints (hands, fingers, knees, etc.), or maybe having seizures (like me).

it's a very insightful look into how us LUPUS Warriors have to make decisions and choices about our day, so if you do know someone that has LUPUS, please check out the SPOON THEORY today, it will offer a better understanding.

be well my friends,
angela :)

Inaugural Post!

hi there, my name is angela and, among other things... I HAVE LUPUS. this is the blog for the non profit foundation i've started - THE BUTTERFLY PROJECT FOUNDATION  for LUPUS, and this is where i will share tons of information, suggestions, events, fundraisers, anecdotes, and some of my story with LUPUS. you can find my whole story at my personal primary blog PRINCESSTINYBUTT the link is to the right there and i get into quite a bit of detail as to what's going on with me, how i deal with it, as well as just the 'stuff' of my life and how LUPUS relates to it. it's not 'ALL LUPUS ALL THE TIME'. it can't be, that probably wouldn't make good reading. but i do talk alot about it with humor, empathy, anger, understanding, and lack of. warning though - i'm a bit of a character.

now, on to this site. here we will be mostly about the business of LUPUS and how to courageously live with it, fight it - not just deal with it. here is where you can come to gather info and research, post your stories, our victories, suggestions, and frustrations. this is to be YOUR place! so book mark this site and visit often!

MAY IS LUPUS AWARENESS MONTH - and someone you know has LUPUS. please get informed.

we are a 'local' non profit, serving Alameda and Contra Costa counties in the East Bay of the San Francisco Bay Area. the majority of our outreach and events will be located in these counties and i'll keep you posted!