14 Years Ago Today...

greetings everyone!

surrounded by some of my most cherished friends and family on a beautiful jamaican beach at sunset 14 years ago today i said "I DO".

i said "I DO" to a man who is truly my partner, my friend, my critic, my lover, my loudest cheerleader and biggest fan. my caretaker. he see's the very best in me all of the time. even when i'm truly not at my best.

like most men, he's not perfect. his communication skills need work. he's stubborn. he often only hears what he wants to hear. he's a bit more then just a little narcissistic and passive aggressive. yes, he's far from perfect. but unlike most men, he loves me in the most perfectly imperfect way, and that's just perfect to me!

if you don't know by now, i can be a handful and a little bit more than a notion. i know my own mind and i can be as stubborn as a charging bull. i'm sure that at least twice each month for the last 18 of the total 21 years  we've been joined at the hip, my dear husband wonders what the heck he's gotten himself into by marrying me.


we've been through alot together. when the minister says "for better or for worse", no one truly thinks of the 'worse' really. in our simple, newly married minds the 'worse' is a vague and distant thing, almost intangible in a way. 'worse' happens to other people. well, it has happened/is happening to us. as many of you know i've been stricken with several nasty autoimmune diseases, one in particular has the distinction of being terminal (the nerve!!), and he and i have been through some things that would rip many couples apart.we are only better and stronger.

i am so very thankful for juan. for his poise. his quiet strength and knowing. his discipline. for his wit and ability to laugh at himself. his tenderness and care. i'm thankful for how he takes care of ladybug and i. for his trust. his gentleness. his willingness to do whatever it takes to make me happy. his honesty. but most of all, i am so very thankful for his love.

be well friends :)

i know, i know... LOL!!

hey hey hey! it's me and i'm doing well :)

 i've just been busy beyond belief. you'd think i would have spent this time 'recovering from my transplant ordeal last year, but NOOOO.... c'mon, it's ME.  i just can't help it.

so what have i been up to?

- working on my foundation The Butterfly Project for Lupus (http://thebutterflyprojectfoundation.blogspot.com, and u can follow us on FaceBook too)

- gardening, sorry no pics from the beginning, our camera is on it's last legs and i'm lazy about downloading pics from my phone. but so far i've grown 2 types of carrots, 5 different types of tomatoes (roma, sweet 100's, cherry, yellow pear, and 'SF Fog'), tons and tons of slender sweet haricot vert (those skinny fancy green beans - LOVE them!), tons of different types of lettuces, 3 types of zucchini, several colorful sweet peppers - both regular and mini sizes.sage, rosemary, thyme, tarragon, and chives. oh and the flowers! tons of dahlia's, irish belles, fixgloves, jasmine, giant zinnias (they're over 5 feet tall!!), hummingbird penstamons, princess lillies. i'm so proud of myself because i started them all from seed!!! YES!  so now i'm getting my winter crops - cabbage, broccoli, more lettuce,spinach, carrots, and my peppers should be still going strong thru november. i'm a happy girl :)

- then there's 'work'... i've got alot on my plate. many of you already know that i run, with my dad, a boutique financial and small business consulting services firm where i also run my life coaching practice from as well  (coachangela.com and my new coaching blog which is under construction!). i had to put my coaching workshops on hiatus, and turn down or refer out several new clients for a little bit while i recovered from my procedures last yer, but i'm back to being busy now. it's a blessing to be self employed, be able ot work with my dad in a business that's thriving (even in this economy!), and that i love what i do and what i do truly touches people in ways that always amaze me!

- and then of course there's my family! the first love of my life - dearest juan my hubby, is still hanging in there. i swear, he must love me because he keeps coming home everyday, lol! i give him such a hard time, but i think he secretly loves it because he loves to fuss. and goodness knows i give him ample opportunity, lol! then there's my most beloved ladybug. she had a banner track season, again, and made it to the Junior Olympics in New Orleans earlier this year, but we didn't go. we chose to go home to atlanta (juan's home and my adopted one since college) for a much needed visit, and we had a blast. it's also where i got addicted to "piece of cake" cupcakes. oh they're truly dangerous. the best way to describe them is this review from Yelp "You literally have no idea. You just don't. This level of foodgasm-inducing dessert is so beyond your realm of understanding, it should have its own planet...Seriously." that's what i would have said, lol!

anyway, now that you're sort of caught up on everything. please know that i'll be much better about posting, because i really love to do it. i've just got to find the time and energy now, especially since i've started two other blogs and FaceBook accounts to maintain. but know that i'm back, and with pictures, lol!

be well friends :)

please know, that some one you know....

whew! and yes, again, it's been a while! but i have been busy and in a good way. my health you ask? well, as with everything - there have been ups and downs, but overall - I"M STILL HERE!

MAY IS LUPUS AWARENESS MONTH

LUPUS is an awful disease that has no cure and, in its worst form, is just as devastating as cancer. i know because i have both, along with a few other critical and life threatening auto-immune diseases. and this may sound crazy, especially because we think of cancer as this alpha/omega of diseases - that there's nothing worse. but i find that my LUPUS (and the LUPUS of many others i know in this fight), is worse than my cancer. although there's no definitive proof of this, we feel that the LUPUS opened the door to my other diseases.

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 (cancer, pulmonary fibrosis, vasculitis, MS, mixed connective tissue disease), but the LUPUS is all encompassing, ever reaching. 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 rocking 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 the seizures..... they rob me of so much too.

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, 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! 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, i have started a charitable non profit specifically for women at risk, the newly diagnosed, and warriors living with LUPUS here in my area = THE BUTTERFLY PROJECT for LUPUS. 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. we're working on our website now and it will be up soon (www.thebutterflyprojectfoundation.org), as well as the rest of the details, and i will keep you posted so stay tuned!

this is 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

be well :)

hey y'all!


hope your weekend was a great one. it was rainy and cold, the kind of days to do nothing because it's just too messy, light a fire, curl up with hot chocolate and read a book days. so i loafed around, procrastinating and skipping out on things i should have been doing - like chores, helping juan fold clothes, and washing ladybugs hair. i love her hair, but HATE washing it. it's beyond curly - as soon as i brush it out, it curls right back up as if it never know a brush or comb.




anyway, sunday i had to made a quick run to trader joes for a bag of lentils to go with dinner, and as usual, the parking lot was like a motorcross obstacle course. people totally not paying attention, doing their best to beat out the other for a good parking spot. fake smiles of acknowledgment as people rush to get to where ever they were going. i noticed a bit of a traffic jam as i headed to my T5, and just as i fell in into it and began to get settle for my drive back home, a young man walked up to the passenger side and tapped on the window - he really startled me. his car had stalled, the reason for the traffic jam, and asked if i could give him a jump, he had his own cables. a weird feeling came over me, and i looked him straight in the eye as i said "i'm so sorry you're stuck, unfortunately i can't help, i've got to get back...". he thanked me and flagged down an oncoming truck. i paused before backing out to see if he would help him.... nope. then as i made my way around to the exit/entrance, which was where the guy was stuck, i cased to see if anyone was helping... no luck.


the light changed and as i pulled off, an overwhelming feeling of guilt and abandonment came over me. i felt so bad, and it continued through the day, so i tried to figure out what that was about. why didn't i help someone in need. for no good reason really? that's not me. it drives juan crazy that i go out of my way to help people, if i can.


was it because it was cold and raining? that's not stopped me before. was it his appearance? that he looked a bit hoodlum-ish, as well as his car? again, that's not stopped me before. i didn't know, and it bothered me. so i thought on it for a while, and came to the conclusion that it had to me my instinct telling me to 'get'. for whatever reason, it wanted me, needed me, to get home.


did something bad happen later? like one of those crazy stories of coincidence? not that i know of. hey, who knows why i didn't stop to help. but i do know that i listened to my instinct, and 'got'! listening to it is something that can be so hard to do. learning when to and when not to heed it can be such a challenge,  especially us women.


we don't know what this universe holds for us and figuring out how to release it's blessings is an ongoing journey, but one of the keys, i feel, is our instinct, and learning to trust it.


just like faith.

i'm back.....yes, again, lol!

well hey there!

how's things? i meant to post on valentine's day, to let you all know that i was sending love. i hope you all had a day full of love...i did!

so, yes, i'm back and SO MUCH has happened to where i would say to myself "ooh, i'm gonna blog this!", but yet there's still the same 'ole, same 'ole. everyone is well - juan and ladybug. she joined the 4th grade volleyball team at school, and began tennis and is turning out to be a natural athlete - like her mommy! yes, she's still running track and the season (along with the scheduling madness) has started. she did decide to drop girl scouts, of which i was disappointed, but totally understand why. with her schedule, she just didn't have the time, plus, she loves the other activities more than GS. and as for juan..? well, he's still chasing me around, trying to make me 'behave'. so no, not much has changed in that area!

as you see from my previous post, i was hospitalized for most of the fall, from early september to mid december, initially for my lung disease flaring up (pulmonary fibrosis), then that lead to a lung infection which kept me in isolation for two whole weeks - i could not leave my room and visitors were restricted to just immediate family for 14 days! yes, i was able to see my beloved ladybug practically daily, even though she was on the 'restricted list' because children are cootie factories, but thank God for the nurses - they just looked the other way!

for ladybug, this is one of her favorite places! mainly because the nurses spoil her rotten!

this was my 'home away from home'.

speaks for itself.

this is the monstrosity that cycles the blood/bone marrow and plasma in and out of my body. it's like dialysis in a way

i tried to capture the plasma and marrow going in/coming out. it's all heated too!

this is some of the plasma and blood product meds they treated me with over the 3 weeks

it wasn't all smiles

this contraption protruding from my neck is called a 'pigtail', and it's how all the blood/marrow and plasma gets in and out

 

the nurses love ladybug so much, and we spend so much time there, that they give her gifts!

juan's bed - yes, he stayed with me most nights. he and ladybug spent weekends

but i'm doing so much better now. the battle is still raging on though, just not at the previous levels. i was in the middle of a course of chemo last month when i suddenly and dramatically began to loose my hearing, to the point that i'm wearing a hearing aid. the docs aren't sure what's going on and are totally dumbfounded - i'm feeling sorry for my ENT specialist because you can see the frustration and desire to fix this for me (he's in love with ladybug) in his eyes and face. well, at least i can hear something - better than nothing. the benefits are that i can hear ladybug or juan being a little smart asses when they think i can't hear them - busted, lol!

overall, i'm on the mend and looking for some trouble to get myself into, lol!

  so please stay tuned, because ....I'M BACK!

yes, i've been away... and a happy turkiey day!

i'm so sorry everyone. i've been away, and it hasn't been too good. i've been struggling with my body, trying to get it to understand that it's needed, wanted, very much. doing my best to let it know just how respected, admired, and loved it is. 

i've been in the hospital for the last 5 weeks, with a previous 2 weeks before this spent in isolation. what's going on with me? it's been a long and drawn out journey, too complicated to even bother to explain at this very moment, but worth doing, and i will. however, just know for now that 'this time' it involves my central nervous system (brain), lungs, and the docs were having a tough time getting things under control. it was a step shy from 'touch and go'. 

poor juan, he was doing all he could to figure out what our options were, with both of us being highly suspicious of 2 medications that we felt the side effects were causing some of the issues they were wanting to 'treat'. and unfortunately, i could only participate so much because of the state i was in - incoherent, going into/coming out of seizures. i could feel his frustration, understood it, wanted to ease it. but couldn't. i had to let him work it out on his own. he wanted me off certain meds NOW, but that wasn't feasible;l he was indignant with the staff and docs, it was interesting for a while. but again, i had to understand that this was 'his' way of taking care of me, protecting me, in the only way he knew how.

neurologically things got really bad  really fast, so it was decided to move forward with bone marrow and plasmapharises 'exchanges' and filtration (??), i am now on the mend! where'd i get the blood and bone marrow? juan. yes, juan!!  he's my match, literally

i hope to have some pics up soon - juan keeps forgetting the camera (i think on purpose!), i may try to upload the pics from my fancy new camera!

i broke down and got a fancy shmancy new phone, or i should say juan made me do it - no, it's not the i-phone (no kool-aid drinking here!), i got the sprint 4g EVO and i LOVE it!!! i'm a fairly proficient techie, so should be up and running on this thing soon enough - i hope!  

well, please know that i'm doing much better now with a few more weeks to go. hopefully i can get some pics up i got using my new phone. 

be well!                                                                                                                           

we are always where we are supposed to be

hey y'all, 

** no, i'm not high anymore, just feeling crappy **

as you know, i wrapped up a round of chemo yesterday and am home. i have alot to tell about just that day, yesterday, but will continue with an amazingly divine encounter i had yesterday with another chemo patient. 

i bee-bopped in, as i always do, chatty and glad handing the nurses (my buddies) and any patients if there, since i usually get there early to get my favorite bed. we all know why we're there, some having their last battle, some are scared newbies, most like me - in a kind of purgatory/hell/limbo. life being held hostage by disease, with no time to mourn because we have to fight. 

so as i was bee-bopping in, i noticed a young lady, seemed young, and clearly uncomfortable, aggitated. she was on the phone at the time so i didn't get a chance to do my glad handing. as juan got ladybug and i settled in and unpacked (i'm there for 6 hours depending), i could feel that young lady's spirit. uneasy, frustrated, scared, tired. 

juan hung around and we chatted, flirted. the nursed goofed around with ladybug while she had her breakfast. then, once he left, the nurses got me re-hooked up, i got my laptop up, and ladybug was engrossed with her DSi, it was just us and it got quiet. and that young lady's spirit was raging. 

i couldn't help watching her, out of the corner of my eye mind you - didnt' want to seem like i was stalking her form across the room. i could just feel something about to happen. like vibrations. then the rage caught up and came out as the nurses were hooking her up. she broke down. 

everything in me ached for her, so i jumped out of my bed, practically ripped the i.v. pumps plugs from the wall, and some how, made it over to her bed and climbed in. the heavy petting my fantabulous chemo nurses do just wasn't enough at that moment. that young lady needed to be held. needed to be told it really would be ok, that she could let it out, be angry, tired, frustrated, scared, but that she still has plenty of fight left because she's made it this far, too far, to just give up and in now. so i did just that. then i wiped her tears, held her head as she vomited. 

in that moment, we connected on a level i can honestly say i never had before. we didn't even know each others names yet. after introducing myself, i gave her round two of my little 'stock' pep talk, let her know that she's a fierce warrior who deserves a 'break'. a 'pity party' even, but that she had to get up when done. and if she felt she just couldn't, then to call me, and that i will help her. 

interesting thing though... usually we have a full house - all four beds. but this day, it was just us two. we are always where we are supposed to be, at any given moment.

yesterday blessed me. wiping her face, letting her crawl up in my little lap, that somehow was able to hold her (i'm not called tinybutt for nothing!), those moments blessed me. filled me. and i'm so thankful. thank you april.

life is good. life is amazing. and i love it!


be well :)




and of course there's pictures!

guess who showed up, out of the blue, with treats! i love my daddy

 

look at that feast - double burger AND nuggets!

 

happy camper

nap time. isn't that MY bed?!