Raindrops keep falling on my head...

I love this scene from Butch Cassidy. A song to live by - That Paul Newman was an amazing man as well (and not to shabby to look at) Paul said, "I expect to pass through this world but once; any good thing therefore that I can do, or any kindness ... let me not defer or neglect it, for I shall not pass this way again."  Just something to ponder. :)

My pregnancy with River was complicated and slightly miserable to say the least. I realize now that the symptoms I had were actually liver related, but at the time, all I was focused on was getting him out to end it! And all I did was wait. Wait to see my miracle... wait to stop feeling miserable... wait to start our new life all together. What I took for granted, was the experience. (Of course I am now completely used to puking daily, itching, swelling,and pee pressure) which I wasn't at the time, so I will cut myself some slack. Nevertheless, I wish I would have gotten out more so people could rub my belly, taken more pictures, enjoyed the not so sick moments more, because it would be my only pregnancy.
But even that aside, it was 9 months of my life -- and now,  I have been sick for almost 2 years  (which eventually some doctors may have some explaining to do) but I do not know what is to come tomorrow. Waiting for a new liver and becoming better has started to consume me, but I need to step back now. Learn from previous experiences -- I need to enjoy whatever part of this journey I can. And trust me when I say, I have seen more things through His eyes in these past few months then I had in the 27 years prior. The sun seems to warm me all the way through... the sound of the wind through the trees... and birds... just beautiful! The other day, River and I took a walk and we stopped at the neighbors to pick some lemons (we have permission). I picked a blossom too, just to smell it on the way home. (Thanks to Hot Dog on A Stick) I make some killer lemonade.

You're no spring chicken!

Last night, my sister and I sat and watched an episode of the Golden Girls where Dorothy had a mysterious sickness, but when she went into the doctors they all kept telling her that it was in her head. Just to face it, "She was not 30 years old anymore" This made me very curious to think... What does a normal 30 year old feel like? I think it was around the age of 20 that I started telling myself the same thing... Well, I'm no spring chicken anymore! I just need to face that I'm getting older...  I remember high school, waking up around 5:30, walking to school for my 0 period at 7:00am... after classes came either cheerleading or track. After that, straight to Hot Dog on A Stick for work til closing, home for homework, bed and then back up to do it again. By my senior year in high school I had 2 jobs, just because... and still had time to meet Jason. (Of course, having 2 jobs was my only way of being out of the house past my 8:00pm curfew. hehe)  But I digress. Even after high school I remember getting up early to drive to the beach in Carmel before work to take pictures... I took classes in Monterey after work, and then slowly classes were replaced with naps and by the time I was 23 I remember leaving my work for lunch to go eat a sandwich and sleep at the cemetery around the corner... Luckily after that, it seemed like there was a cemetery within a block or two from every job I had.

I was 25 when River was born, and doctors blamed everything on that - What do you expect, your body went through a lot of trauma, you nearly died, and you had a baby! ...of course your tired. The puking -- must be stress. Oh, and to think, all this time I could have been in bathing suits, hehe! It's just extra weight from the baby, you'll lose it - just work out harder.  Ahh, Ricki, Ricki, deer-eyed and dumb-founded, I followed... probably with a stupid smile on my face. hehe. jk. Anyways, I just thought I would share. If you take anything with you from this, let it be to know your body. Like they said on the Golden Girls, some doctors will blame the patient's mental health or what they think the "natural" aging (or a recovery) process is, if they can't diagnose you. They can make you feel guilty or crazy instead of just saying "I don't know" and refer you to someone who might.
Dorothy did end up finding out what her mystery sickness was (Chronic Fatigue Syndrome) and Ma got her pussycat back... I love that show. As for me... still here, trying to stay afloat and upright for that matter. I have decided to cauterize my nose finally. Not because of the inconvenience or embarrassment, not because I am scared that I won't be able to stop it, not even because of the sharp-as-glass blood clots I have to grossly dig out of my nose every morning - very discreetly, because I know River would mock me) Nope, it's the smell that is making me nauseous -- and that is all I am going to say about that.

Also, in keeping with the "Golden Girls" theme... I received my Medic Alert bracelet this week! Whoo hoo. There is actually a bit of freedom that came with receiving that - Both my cats have their security chips, and now... if someone finds me, I'll be reunited with my family too... Good things! On a side note, another "get out of jail free card" if I WAS a drinker... My medic alert bracelet actually says -- May appear intoxicated. Darn, could you imagine that... "No, no, ocifffferr... I haven't been drinking -- seeeeeeee my lil' bracelet thingy right here." (over exaggeratedly pointing at the wrong wrist and stumbling backwards) Man, one more thing wasted on me! hehehe... Oh, and the bracelet is green! And speaking of green, not so "Golden Girlish" I am reaaaaaally, really wanting to get a new tattoo to signify this journey, just a little one with a big punch - a green ribbon perhaps. :) and on an even more personal note, I did make a phone call yesterday as well (besides doctors and my mom - there really are no outgoing calls, I'm just to tired) Who did I call? I did it, I called my father, and I am proud of myself, even if it was for not, because I sang the "Happy Birthday" song and told him River's age now (har har, I JOKE -- I left it at Happy Birthday!) but I made the call. I don't know if I am doing the right thing by letting that relationship go... but again, I am just to tired, and I feel like -- well, I would rather use my bits of energy on those who want to be with me, people that make my days brighter... and people with English accents :)
 ...We only pass this way one time....

I am Tyler Durden...tehehehe

Did you know that "You can swallow a pint of blood before you get sick"?... I don't know if that is true but Edward Norton said it in Fight Club, so it could be. That could be the reason I have been even more nauseous then normal and that I seem to be a tad bit light headed all of the time. I also seem to be doing a lot more laundry and Shout does not always take the blood out. You guessed it... It has been another rough couple of weeks for me. Larry has been bugging me more and more, though it is usually just an annoyance, sometimes it causes me to "hunchback-it" over to the bed and tell Jason... "Momma needs her pill" tehehe. I have also probably traumatized my husband and son to some extent when they wake up to this picture. I know I have stumbled into the bathroom after a nap and have been startled by myself in the mirror. Ahh!! JESUS! It definitely looks worse then it is. So besides Larry hurting, being exhausted, still puking a few times a week, and the bleeding thing, my newest irritation is that most communication hurts my head. Though it makes me appreciate Jason's "quietness" -- the words "You never talk to me" have not come out of my mouth in a looong time. Most everyone else causes pain. One of the games that me and River play is "opposites" he says, Up, I say, Down.... etc. but lately after about 5 words my head begins to hurt, of course it doesn't help that he says words like Rain, and the only thing I can blurt out is... No...Rain? These answers do not satisfy him, and by the end of the game I just want to go to my room and cry myself to sleep. Defeated. Conversations are becoming to quick for me and I am irritated at my processing time. It is hard to be slow and know it. Familiar things are not familiar anymore and my short term memory is gone... My mom had asked me the other day why I always have so many glasses of water sitting around and I had to tell her... because not only do I forget I poured the water (and have been drinking it) but also where I sat it down after, and instead of looking for it, I would rather not hurt my brain and just pour a new one... otherwise I will walk in circles for a while trying to remember what I was looking for in the first place, and only remember once I realize again that I am thirsty. It's a vicious cycle (and it makes me dizzy) tehehehe, but I am sure it is just as irritating to watch.
Anyways, I guess what I am saying is I sure hope this isn't permanent because when I get my new liver I plan on being the social butterfly I once was (giggles) -- shut it, I was! Well, I always had a lot to say, I just never thought anyone wanted to hear it, but as it turns out... I don't only crack myself up, I'm actually kinda funny. And now, I have lost any vanity that I had holding me back!! tehehe. And I hope I still have some friends and family to share it with!

It's my birfday!!

WOW! I don't know what to say... I am 29 today!! Not to shabby for someone who has been told miiiight not be around to long more than once! Mwuahahaha... And I can honestly say, this year has been the most bittersweet. I have learned so much about myself and the way I choose to live. We really should not take life for granted. Each day might not turn out the way I plan but at least it turned out, and I am blessed to try again tomorrow. It took me a long time to really appreciate that, despite my health, and each birthday is now a big fat slap in the face of that! tehehe. So I'm celebrating and shouting out today. It's my birthday!! Of course it doesn't hurt that I had the most amazing celebration of life on the 6Th. It also doesn't hurt to think... I have a chance of being a whole new person again soon!

The doctors say that even though this year was the first that I was actually unable to to work, Larry has been slowly sucking the life out of me for many years... And here I was about ready to give up, thinking I just couldn't keep up with LIFE. What a horrible failure I thought I was becoming... slowly starting to forget things, needing naps, (yet we never questioned a 20 year old taking lunch breaks in my car so that I could sleep - That's not odd) I really was in a dark place, and depression was always looked at as a weakness in my house as a teen so I pushed through it. Then when I got out on my own, I just figured... this must be normal, just push, push, push through it (with blood, sweat, pain, and many many tears) All along thinking... man, am I one weak person, is it supposed to be this hard (and painful)? And then finally told..."Ummmm, NO silly girl, it's not!" So now, I am just excited to think of what may come... I feel like a kid again, the world has opened up for me... my oyster (The oyster I can't eat though...promised the doctors. hehe) Energy, pain free days. Wow, who would've thunk it! Best birthday present ever. So yes, even though I am laying here at 4 am with my woobie on the couch because the bed hurts and because it is true, that the one who snores always falls asleep first. I have tissue stuffed up my nose that is partially blocking my view as I type, and Rivers potty chair is next to me. I really am smiling (partially because I think it is sad... and people wonder why I don't want to set up video chat) But mainly because......It's my birthday. DUH! tehehe and things are looking up! -Hey, don't give me to much credit, it's easy to look up from way down here. tehehe. Brighter days baby, brighter days!

My birthday wish: For everyone I know to become an organ donor and spread the word. lets make it so that no one has to wait (and maybe not make it) to start living again! Got your pink dot?

Ask away

It was like old times last night... We had some friends over, fired up the grill, had the kiddies playing in the background. (background, foreground, all over the ground!... man I wish I had the energy preschoolers) Anyways, I just thought I would share, because I was unaware of the preparation that went into my girlfriend seeing me for the first time since we found out...gulp, -Transplant. Though once I told her that I named Larry and explained that he had his very own blog, I think she relaxed a little. She handled me with kid gloves at first and I have to admit, if you are going to do it, I'll milk being waited on. tehehe suckas! (Just kidding, I really do appreciate all the help I get -- Any ONE thing that someone does for me is energy I get to use on something else, like River.)
Anyways, what I realized is that she had some tension about visiting me. What to say, how to act, what I was going to look like (everyone is always surprised at how freakin' good I look)Do they ask how I'm doing, or do they ignore the elephant in the room? And what the heck is End Stage Liver Disease anyways?
...What did she find out? Besides probably to much information on how cool the liver is, and specific instructions on how to be an organ donor (tehehe) She learned that I am still.... just me! And one thing I could always say about me, is that I goooo with the floooooooow... and I really do live by the motto that I can either laugh or cry about the things that happen... Laugh or cry - and crying really does give me a headache, and with cirrhosis I can't take anything for a headache. ahahaha.
--Oh yes, she also learned that I get very excited about things I know a lot about... and unfortunately, I do know a lot about the liver now... Hmm, I may not get many phone calls anymore. :)

Another little angel returns home.

It is such a sad day on earth, when He takes his children home... And though I truly believe that Heaven rejoices, and it is where we will all be some day, I can't even begin to imagine the emptiness a mother must feel at the loss of a child. I agree that everything happens for a reason, and that death is not the "end", but for us living here... Well, we are selfish creatures, and I for one know that if it was not for my son, I would not be fighting as hard as I am to stay.
Recently, I have had more than just a few people in my prayers that have suffered this loss. Whether they had ever seen their lil angel or not does NOT matter to a grieving family - and I say this with the utmost sincerity (and in no way comparison) , when I say, that every time someone loses their baby, it brings back the hurt of me losing my chance. I feel like even though the rest of my family was only in theory... it was still there. I lost my chance of baby Maddy Jaymes or Ethan James; but I have my miracles, River James and Jason! And obviously, Jesus knew that it was enough motivation to keep me going (without killing me in the process... hehe - more then one River right now....GULP) ...So don't feel toooo bad for me, I know my limitations. lol.
Now, I felt the need to write this for a few reasons. One, to remind myself of my blessings. Two, to remind others of the same (and maybe for some -- perspective). and most importantly Three, which.... I sadly say will just be lost in Internet space... but to my mom, who still can't bring herself to read my writings, and to my extended family who has any (and every) other excuse for not reading (listen... if you are reading, I'm obviously not talking about you...) I can only imagine the fear and anger in your heart to be faced with being told that you may lose your child. Although, this is not the first time she has been told this (I doubt you ever get used to it) Her and Lee have made it through together, hopefully gaining strength each time. The people who have helped me through though, sadly my mom does not have. I have adopted my family...Lee's family, Jason's family, and my friends - I swear, they were all strategically placed by God just to help me through, because they have!
...But I digress. I guess what I am trying to say is, I wish I could somehow help to heal the pain you must be feeling; but all I can do is say to MY mom at least, that I don't believe this is my time, not yet. And I hope that like me, you have found people who give you strength and help you through this battle. I will do all I can. to remind you that we all return to Heaven (well, hopefully) but not to worry, because I plan on being here for awhile. River will have an earthbound mother stalker... not one from above. hehe. So like I mentioned before, we would all take our own problems back from the pile... me included, because I wouldn't want to be my mom, jeez or my kid... or my sister, friend or anything, awe man... I suck. hehehe

This tattoo was done just after River was born by Jeremy Swan of Broken Art Tattoo (plug) It is the tree of life with 3 stars. 1 for Jason, River, and me. It also has 2 fallen feathers for our babies that never were.

Skip to my lu!

Larry was not to fond of it, but the other day River and I skipped to our next destination and I have to admit, it was fun. Over these last few months, my health has gotten worse but I have also been given some amazing gifts along the way.
In movies, I always watched the couples washing dinner dishes together and thought... "Wow, what a great relationship, wish Jason helped me with SOME house work!" Well, let me say, a few nights back, I was unloading dishes from the washer and Jason stepped in and started helping, and I smiled and thought to myself, WOW -- Be careful what you wish for ladies!! hehehe
I am also now blessed to know who is really here for me (and what a real Dad does) The relationships that were meant to be, grew stronger and the others.... I was able to just let go peacefully.
My self-esteem has sky-rocketed, because I know that ONLY someone pretty awesome would be surrounded by sooo many amazing people...
--Now soon, I'll be able to take all of this great stuff (Priceless knowledge at 28 -- suckas!) and enjoy it. And THAT to is going to be because of someone that knows me and thinks.... I deserve more time, more time with my Husband, my SON, my family, and they are willing to help make that possible by giving me life! Life is good! ...May I suggest to my readers, you may look like a nut - but skip somewhere today (If I can do it, you can do it -- and see if you get into it as much as me, where you even get your eyebrows in the rhythm) hahaha. Ooh, and by the way, incase you do not know --->
You can by tickets to my birthday benefit right over there, yes there, --> It really is going to be freakin' fun!

My new year wisdom

Happy New Year!!! I woke up thankful today. I have decompensated Cirrhosis-yes, but!! A year ago today I was still waking up on a daily basis wondering what was wrong with me? Was this ever going to end? Sickness has always been like a splinter for me. It hurts just enough to piss me off and I can never find where it is. But not anymore... We've got that sucker in our sights and now just need to yank it out (metaphorically speaking) I know it is a little (ok, a lot) more complicated than that, but at least now, I know what and where the monster is and with a crapload of help, meds, and prayers... (oh yes, and a liver -- another key ingredient)I have faith that it will be fixed... I can be healthy and pain-free. I am no longer dreading the new year because I know it will be filled with tiredness, weakness, and sickness. I am excited for the unknown possibilities.

I was reminded today of an old saying,

"If we all threw our problems in a pile and saw everyone elses, we would take ours back."

For some reason that is the thought I want to leave my 14 readers with... hehe. and trust me when I say, I believe it! May we all be reminded of what a gift life is, and be able to enjoy it. <3

Well it is 4am and besides Larry feeling a little beaten up, I feel wide awake... OOhh, I should organize something, actually get the Christmas cards out I bought LAST year... just thinking about all of the things that have fallen to the wayside makes me kinda sleepy again, and after actually getting out of bed, I realize that I didn't have that much energy after all. This last week has been a tough one. My tiredness, sickness, duration of sickness, and pain has all steadily increased over the last few years, but this week -- I literally cried getting out of bed, and it scared me, because I thought to myself, is this it? But then I woke up yesterday with a fever... and sighed relief. River was sick last week. I most likely just caught his cold, but I'll keep an eye on it. It is hard when I look in the mirror and see dark sunken eyes. I look frail and tired and can't seem to stop the flickering thought that this could be my last Christmas... or one of them. I just wish I had more energy, what will River remember? I want to bake cookies, and go to candycane lane. I want to stay up late with cocoa and watch It's a Wonderful Life, make ornaments and wrap presents... I barely remember waking up without sickness, pain, or exhaustion. When I asked my doctor if after my transplant I would at least feel like I did before last year, and he said, "Ricki, I have no reason to believe that you won't feel better then YOU have in many years." --Whenever I feel like I can't take much more...I think about that! :) On a side note... I think that because of my sickness, Rivers future wife will thank me. hehehe... A heart of gold this one!

I don't know... it's an update or a mission statement

Wow...this waiting thing is tough! I remember a few years back, when I had more energy, if I asked someone to do something and they didn't do it in MY time -- I did it myself! This has been one of the hardest, yet maybe one of the most humbling experiences so far. The fact that many things need to be done for me now, and I am at the mercy of others...If you know me, you know I no likey! But not for the reasons you may think. There are no pride issues here. Sure, of course I want things done a certain way and timely, but most of all -- I just don't like to burden anyone. (Picture Eeyore asking for help, that's me). But quickly, my freedoms are flying out the window (hehe dramatics) The most recent one -- I have sort of, kinda, been unofficially, officially relieved of driving duties. (I think it was USC's very firm request that I get a medicalert bracelet that confirmed it for Jason) Once he knew that it is a possibility with my ammonia levels rising that I may become disoriented at any time...ya.
So most of the time, River and I shuffle back and forth between my moms apartment and mine. It leaves me with a lot of thinking time. (Unfortunately, it is usually the same things over and over because I forget I resolved the issue already. lol) It is even harder with the HE (Hepatic Encephalopathy) to stay focused... But I wrote them down. Well the ones I could remember at 4am.
~~The first...I am not sure who is aware, but I have some AMAZING people on my side, and a few really awesome events that they are throwing in my behalf. This brings me to my introduction... asking for help. One of the people who has put most of this in motion, my Aunt Bev ((props)) said something to me the other day that I am going to have to agree with and mention here... It is true, that I do not like to ask for help, but - and this is the biggest but ever! I will fight tooth and nail for my son.... and my son, needs his mother. I will fight for that. I joke about being dramatic, but this is not. The more research I do, the more I worry about my time. Unless I fight, I could easily be one of the 19 people that die daily waiting for my second chance. And I have to make it through this battle, because for me...this is just a battle. My war is on Hepatitis C, Cirrhosis, and Organ Shortages. I know it sounds big... But those are the bases I must cover to keep River safe (well, his liver anyway)
Hmmm, I guess I kind of rolled all my thoughts into one, at least the basics. Oh yes! Which brings me back to the AMAZING people!! I know it is another topic I am probably beating to death, but really! It's redonkulous! I don't know how I got blessed with sooo many living Angels.
These angels include my little sister Rylee and a friend of hers Kelly, who have put together a benefit for lil' o me here in Fullerton. (*click here to go to facebook link* for more info) I know that they can use donations, volunteers, items to raffle....etc)
In February (for my birfday...hehe) My Aunt Bev, has put the wheels in motion for a BIG BIRTHDAY BASH/FUNDRAISER for me at the Highlands Inn, Carmel. In Salinas, my mother-in-law, Rhonda is finding ways to raise funds too... (more info on those to come) It is amazing and oh so needed, but the most amazing thing of it all... Is that there is at least 1 person out there that will become an organ donor and SAVE up to 8 lives now because of us! Yes, US! Muwahaha, you didn't even know when you started reading this that you were binding yourself to my cause...hehe, you too must go and spread the word on being a donor now!
Don't take your organs to Heaven, Heaven knows we need them here! :)

Lord....Make me Sally!

These last few months have gotten more difficult, and every new level of lost energy is ten times worse then the last! I'm losing all my spoons here people....and my mind is going with it. In my mind, I want to do things, but my body -- that is a different story. My life right now, consists of small snip-its of energy, and some serious frustration in between. (and I'm a lucky one) But hopefully, soon I will be able to do the things that most everyone else seems to do effortlessly....Soon, I will be SALLY!

Sally! I am jealous of a cartoon car! My Three year old has affectionately nicknamed me Lizzy from his favorite Disney movie, Cars. Though I think it is clever and cute, it hurts my heart when he is disappointed that I will be Lizzy in a race. "Why can't you be Sally" he asks as he gets ready and "revs" his engine. I explained to him that it will be a while...but I will be Sally soon. Doc Hudson has to replace my engine and then I am good to go! This answer seems to suffice, because now, every time he asks to race me, he lets me know that it is OK that I am Lizzy, "Cuz Doc hasn't given you your new engine yet, huh? -- but then you will be fast like Sally, right?" :) So I "putt putt," out the door, shakin' my caboose and slowly run down the sidewalk, while River does circles around me.... Collision diverted! hehe... Oh what the neighbors must think.

Angels EVERYWHERE!!

Maybe it is because I am so openly vulnerable right now, but I prefer to believe that I have been sent many angels to get me through this time. (...He may be getting a little sick of me) But today, as I got on the computer and saw that donations to help pay for my transplant are over ONE THOUSAND DOLLARS! It really sunk in that it is going to be a long road, but we can do this!! I cannot say enough about my closest angels, those who are there day in and day out... But right now, it is the ones I'll never meet again and the ones I don't see everyday that I want to thank. Let me 'xplain.

Recently Jason and I went to The Slidebar for dinner... It was the second time in a row that I had gotten sick there (BEFORE we even got our food) I went to the bathroom and started umm...(in the words of Rylee...) Worshiping the porcelain god. I thought that Jason had sent someone in to check on me because right on que, I heard, "Are you Ok? Can I get you a glass of water?" When she came back, I opened the stall door and saw that she didn't even work there. I thanked her and apologized..."I get sick a lot" I told her, and as she smiled and said she understood, I realized that she was wearing a wig... a glass of water and piece of gum from someone who truly understood... What are the odds of that?
~~By the way, dinner was great. I got back to our table, Jason and I talked and listened to music. I ate my lettuce wraps, creme brulee for dessert and kept it alllllllllll down!

I met a man at Target who (for some odd reason) I shared that I needed a transplant with him. He then pulled his shirt down to show a massive scar down his chest. "I'm on my second life too" he said excitedly, "You will be fine!" ...I left Target happy. I believe him too!

Larry has now been prayed over at family dinners, churches, doctors offices, (although it worries me when one of my nurses asks to pray with me...hehe) And yes... it is a long story, but even in front of Disneyland in our pirate costumes. I have been told recently that I am an inspiration, a fighter, brave, and skinny... and lets face it, who wouldn't want to hear those words. Complete strangers are praying, holding fundraisers, donating, spreading the word on Organ Donation FOR ME... in other words ~ giving me hope, strengthening my faith in the world... so if you have not yet realized, I am thanking YOU! :)

What not to say to us sickies...

**I have to say me and Jason were laughing at some of these.... I personally love #10 and #19 (although I have never had the pleasure of hearing #19) lol

20 Things Not to Say to an ill Person

June 19, 2009 by admin
Filed under Online Ways to Help, Today's News, Annoucements & More

People have good intentions when they say things to someone with an illness, but it comes out all wrong.

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Things NOT to say to an ill person #1 – You look so good today!

Things NOT to say to an ill person #2 – You just need to get out of the house more

Things NOT to say to an ill person #3 – If you stop thinking about it, the pain will go away

Things NOT to say to an ill person #4 – You should just pray harder

Things NOT to say to an ill person #5 – You must not want to get better if you won’t try this –

Things NOT to say to an ill person #6 – When I was your age I didn’t have the luxury of being sick

Things NOT to say to an ill person #7 – You’re sick again??

Things NOT to say to an ill person #8 – I wish I could just sit around all day

Things NOT to say to an ill person #9 – No pain, no gain!

Things NOT to say to an ill person #10 – I’d be sick too if I saw doctors as much as you do

Things NOT to say to an ill person #11 – I have this juice that is working wonders…

Things NOT to say to an ill person #12 – You must still have sin in your life

Things NOT to say to an ill person #13 – If you got a job you’d have something else to think about

Things NOT to say to an ill person #14 – Your illness is caused by stress

Things NOT to say to an ill person #15 – You can’t be in that much pain. Maybe you just want attention

Things NOT to say to an ill person #16 – What have you done to make God so mad at you?

Things NOT to say to an ill person #17 – There are easier ways to get attention

Things NOT to say to an ill person #18 – It’s not good for your kids to always hear you whining

Things NOT to say to an ill person #19 – When are you going to get rid of that cane?

Things NOT to say to an ill person #20 – I’m so glad to see you out and about feeling all better

Hope for hurting parents

Hope for Hurting Parents of a Sick Child

by Kara Schwab

There is nothing more devastating to a parent than to see your child suffer from a disease or serious illness. Whether a particular health issue presented itself before birth, upon delivery or years later, parents' grief, worry and discouragement over an ill child can at times be almost too much to bear.

The feelings of helplessness often seem overwhelming. If you could, you would change places with your child in an instant. And in a time where so much is focused on your child — as it should be — parents' lives can easily whirl out of control, with their own needs forgotten or suppressed.

With doctor appointments, second opinions, testing, trips to the pharmacy, updates to loved ones, and so on, there's not much down time left for you.

When you find yourself feeling stretched almost to the point of breaking, there are healthy ways to gather strength to cope, and in turn, reflect hope to your child.

Be honest. It's OK to grieve. It's OK to be angry. You need to be honest with God and yourself in order to work through the emotions that accompany a child's serious illness or special needs situation. But then channel those feelings in the right direction. Exercise out your frustrations. Journal your grief. Record your thoughts of love to your child through letters, scrapbooks or home videos. Talk with your spouse: Share your feelings and don't stop communicating.

Get educated. The Internet is an incredible tool you can use to learn more about your child's illness — but it can also induce incredible fear. It's best to not spend too much time researching. Learn what you can, but use discernment. Stick with official medical Web sites for information and case studies. These sites will direct you to other parents who know what you're going through or support groups you can lean on for encouragement.

Lean on others. You can't do it alone. You may try, but you and your child will suffer. Don't be afraid or too proud to receive help, support and encouragement from friends or family members. In fact, you ought to ask for it! Surround yourself with people who care and are willing to pitch in by babysitting, helping with housework, shopping for groceries or simply offering a listening ear. Sometimes, it can also be beneficial to talk with an objective person who can help you deal with the issues you're facing. Our staff of licensed Christian counselors is available to offer encouragement, as well as provide referrals to other professional counselors in your local area.

Be good to yourself. As any parent of a sick child knows, this is a very real dilemma. On the one hand, the focus needs to be on your child to help him maximize his health and abilities, get well, or endure. But on the other hand, your child needs you to be healthy, strong and in control. And you can only be this kind of model for your child if you take care of yourself by eating right, exercising and getting plenty of sleep. If you feel you don't have time to do this, eliminate other things from your life and make the time. Your mental, physical and spiritual health is critical to your child's health.

Remember to laugh. A child's illness is serious. That's why it's vital for you to help her find sweet relief by not taking every moment of the day too seriously. When your child sees you doing this, she will follow suit. Laughter is contagious and is a good medicine. It will make you both feel better.

Trust God. Do you believe everything happens for a reason? If you trust God, you can feel safe knowing that He is in control of your life and has His hand upon your entire family. The most critical way to cope with your child's illness is to surrender it all to God. Ask Him to help you trust Him to take care of your little one's life. He created your child, and He can heal and restore that precious body, too.

Whether you've been dealing with a child's illness for a long time or have recently received a devastating diagnosis for your young one, know that one of the best ways you can help your child is to learn to cope with courage.

So, hang in there. While it's true that you may not be able to take away all of your child's pain and suffering, your love will continue to heal and nurture his heart.

Copyright © 2003 Kara Schwab. Used by permission.

The Spoon Theory

Just wanted to give a little update on my visit yesterday with DocTor AnndersoN (it is really Dr. Anderson, but for some reason I cannot say his name without the accent Mr. Smith has in Matrix...no, really, EVERY time.) ...Anyways, not much to report, there have been a few more tests added to the list, including an echo today to check on my Tricuspid Regurgitation. ...My goal is to glow like a Christmas tree by December...(stay tuned)
Anyways, my main complaint, again, was the extreme tiredness. "Isn't there anything I can do for this. I nap like a geriatric..." --No, DocTor AnndersoN said "Not until Larry has been replaced" ...uh-huh, I got him referring to Larry in the third person too, although I didn't like the answer. I have no idea when Larry is getting the boot.
So that is that -- and I went home to take a nap. This morning though, I got up and started looking up some foods to put in my juicer (thanks to the Albertoni's) to give me a pick-me-up and I came across this little story. It hit home for me because it reminded me that a lot of people don't have to "conserve spoons" So I wanted to thank my friends and family for understanding.... whether it be grabbing River on a rampage, letting me nap before a party, accepting less calls then deserved, or taking a much slower, less bumpy ride on the jetski. Tank you!

Here you go -- it is a little lengthy, but good.

The Spoon Theory
by Christine Miserandino

My best friend and I were in the diner talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.

As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know?

I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn't seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.

As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.

At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said "Here you go, you have Lu pus". She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands.

I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.

Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a "loss" of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.

She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become?

I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of "spoons". But when you have to now plan your day, you need to know exactly how many "spoons" you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn't even started yet. I’ve wanted more "spoons" for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.

I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said " No! You don’t just get up. You have to crack open your ey es, and then realize you are late. You didn't sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can't take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too." I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.

I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your "spoons" are gone, they are gone. Sometimes you can borrow against tomorrow’s "spoons", but just think how hard tomorrow will be with less "spoons". I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on "spoons", because you never know when you truly will need them. I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.

We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.
When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didn’t even bother to add into this game, that she was so nauseous, that cooking was probably out of t he question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all.

I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn’t want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly "Christine, How do you do it? Do you really do this everyday?" I explained that some days were worse then others; some days I have more spoons then most. But I can never make it go away and I can’t forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, "I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared"
Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyon e else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day's plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count "spoons".

After we were emotional and talked about this for a little while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can't go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug when we walked out of the diner. I had the one spoon in my hand and I said "Don’t worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don’t have room for wasted time, or wasted "spoons" and I chose to spend this time with you."

Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too. I think it isn’t just good for understanding Lupus, but anyone dealing with any disability or illness. Hopefully, they don’t take so much for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my "spoons".

The End.