Monday, August 31, 2009
There will be a silver-lining....(but not on this post)
I'm going to keep this post short....I am stupified right now, but, I did receive the call today from Dr Jamal. My AFP levels have raised...Which means now we just wait for the tumor to show itself. I will get more indepth info now.... But basically on the bright side, this should decrease my wait time on the transplant list dramatically -- years ago, it would have taken my chances of receiving a new liver off of the table, but they have found that when Hepatocellular carcinoma is still in its early stage, there is hope - as long as I can get a new liver - there is hope. Now.... we just need to get USC to get back to me, and a start my new regiment of CT scans every 6 weeks.
Saturday, August 29, 2009
Guess where I was today... I'll give you a clue.
* Get me outta here! *Wednesday, August 26, 2009
USC got the ball rollin'!
Yeah USC. It sounds weird but a huge weight was lifted off of my chest when I got the call today that USC had accepted my insurance. UCLA would not even start my work-up because of my insurance....too expensive, they said, and I was a little worried (OK, A LOT) that it was only going to be the beginning of a trend.
But I got the call today from my doctor that all is a GO! and it looks like USC (at least for now)! I have never been so excited to get a doctors appointment, hehe.
That brings me to what has been nagging at me since I found out I would need a transplant... I don't wanna another liver! :( Not only because I'm a little scared (just a tad), and I know I will be on meds for the rest of my life, or even because I vowed to never spend another night -- let alone MORE weeks in a hospital again...but how am I going to take someone elses liver? If I do take one from someone who just died, how am I going to be happy knowing someone else had to die, though I know it is not my fault that the person didn't make it; furthermore, what if when it is my turn to receive a liver the person behind me dies waiting, or the person behind that person. Me being sicker at that specific time could be the death (actual death) of someone else. And if I take a partial from a living donor, what if something happens to my loved one, nope, couldn't live with myself... Even if it was just painful for them...I don't want someone to risk it. Or what if I am one that didn't get one in time...Scared to get one, and scared not to, but I imagine everyone must feel like this from time to time when they find out. I know, a little dramatic too, but It is a big responsibility, accepting this gift (if I get one). I guess the only way I won't feel so bad is if I can pay it forward, get the word out on this shortage. Make saving me, help to save others. Wow, I guess I really did need to get that out. So many new thoughts and emotions, but they aren't all bad, not all bad at all. :)
But I got the call today from my doctor that all is a GO! and it looks like USC (at least for now)! I have never been so excited to get a doctors appointment, hehe.
That brings me to what has been nagging at me since I found out I would need a transplant... I don't wanna another liver! :( Not only because I'm a little scared (just a tad), and I know I will be on meds for the rest of my life, or even because I vowed to never spend another night -- let alone MORE weeks in a hospital again...but how am I going to take someone elses liver? If I do take one from someone who just died, how am I going to be happy knowing someone else had to die, though I know it is not my fault that the person didn't make it; furthermore, what if when it is my turn to receive a liver the person behind me dies waiting, or the person behind that person. Me being sicker at that specific time could be the death (actual death) of someone else. And if I take a partial from a living donor, what if something happens to my loved one, nope, couldn't live with myself... Even if it was just painful for them...I don't want someone to risk it. Or what if I am one that didn't get one in time...Scared to get one, and scared not to, but I imagine everyone must feel like this from time to time when they find out. I know, a little dramatic too, but It is a big responsibility, accepting this gift (if I get one). I guess the only way I won't feel so bad is if I can pay it forward, get the word out on this shortage. Make saving me, help to save others. Wow, I guess I really did need to get that out. So many new thoughts and emotions, but they aren't all bad, not all bad at all. :)
Monday, August 24, 2009
Cirrhosis and Salt (a.k.a. my newest nemesis)
Let me say that since I have started on my diuretics and reduced my salt to 2000mg, I no longer vomit every single day, I can breathe and walk better, and I don't look 8 months pregnant. I have lost over 20lbs since starting this regiment last month and have not woken up with my face so swollen that I couldn't see properly....My major culprits were canned veggies and beans, soy sauce, processed lunch meats and cheeses. Doctors thought that since I am young, I must be healthy...They put me on anti-depressants because they assumed it was a nervous stomach. Months went by and I was still sick. A second opinion resulted in an ultrasound, which showed a moderate amount of fluid build up in the abdomen....which is how our journey here began. Even if you do not have liver damage, I just thought the following article was very interesting, however if you do...please read this-- I know that my doctors in the past did NOT stress the importance of salt restriction!
Important Facts About Salt and Cirrhosis
Upon being diagnosed with cirrhosis, physicians typically advise their patients to completely avoid, or significantly restrict, sodium intake. Learn why eliminating foods with salt from your diet is absolutely necessary if you’re living with cirrhosis – and find out some helpful hints on how to minimize salt intake.
by Nicole Cutler, L.Ac.
When liver disease progresses it can lead to cirrhosis, the permanent hardening, shrinking, scarring and reduced functioning of the liver. Upon being diagnosed with cirrhosis, physicians typically advise their patients to completely avoid, or significantly restrict, sodium intake. With all of the lifestyle changes demanded of a person with advancing liver disease, avoiding sodium can seem like yet another restriction on your culinary freedom. However, passing on foods with salt is more than just a casual recommendation – the pathology of cirrhosis makes it a necessity.
Osmosis
Consuming salt fosters water retention. When in the blood supply, salt draws water out of the surrounding cells into the blood via osmosis. Remembering back to high school chemistry, osmosis is the tendency of concentrations across semi-permeable barriers to equalize. This is easily illustrated when salted water flows from an area of low salt concentration to an area of high salt concentration until both are of the same concentration. Because the body’s cells work best when a constant state is maintained, we are hardwired to keep mineral concentrations (such as salt) balanced. Therefore, the more salt in a person’s diet, the more fluid the body retains in an effort to dilute the salt.
Related Cirrhosis Pathology
When liver function is reduced, several biological events further caution against eating salt. The following physiological processes render a person with cirrhosis much more vulnerable to salt ingestion:
· Blood Pressure – As cirrhosis progressively scars the liver, its ability to effectively filter blood is reduced. This results in a reduced volume of blood, which lowers blood pressure. When blood pressure is low, signals are sent to the kidneys causing a release of chemicals for retaining salt and fluids.
· Albumin – The liver produces the protein albumin, which is responsible for holding fluid inside the blood vessels. Scarring of the liver causes blood albumin levels to fall, resulting in fluids seeping out of the leg and abdomen tissues.
· Portal Hypertension – When liver scarring causes a backup of blood, portal hypertension develops, elevating pressure in the vasculature coursing through the liver. Following the principles of osmosis, some of the fluid inside the highly pressurized portal vein leaks out to prevent the blood vessel from bursting.
The fluid retention typical of cirrhosis is typically found in two locations:
1. Edema – Due to gravity’s pressure, excess fluid accumulates in the tissue beneath the skin of the ankles and legs. Called edema, this swelling is typically worse at the end of the day, after a person has been on his or her feet all day long.
2. Ascites – As more salt and water are retained and liver function decreases, fluid accumulates in the abdomen. Increased abdominal fluid causes the kidneys to retain even more water, because they think the body is dehydrated. Known as ascites, swelling of the abdomen is a telltale sign of cirrhosis.
Why Ascites Is Unwanted
Aside from expanding girth around the midsection, ascites can cause the following medical complications:
· Abdominal Pain, Discomfort and Difficulty Breathing – When too much fluid accumulates in the abdominal cavity, the ability to eat, ambulate and perform activities of daily living can be severely limited.
· Infection – Known as spontaneous bacterial peritonitis, ascites can cause infection marked by abdominal pain, tenderness, fever or nausea. Without prompt medical intervention, spontaneous bacterial peritonitis can cause kidney failure, severe blood infection and mental confusion.
· Hernia – Elevated intra-abdominal pressure from ascites can lead to the development of umbilical and inguinal hernias. Typically manifesting with abdominal discomfort, pain or an abdominal bulge, a surgical repair may be necessary.
· Hepatic Hydrothorax – Ascites can cause fluid to permeate the chest. Called hepatic hydrothorax, abdominal fluid fills the lung cavities causing severe breathing difficulties. Furthermore, a buildup of fluid in the lungs can lead to heart failure.
How to Minimize Salt Intake
Since fluid accumulation associated with cirrhosis can be severe, diet is the first and most important intervention. Limiting dietary sodium helps prevent retaining extra fluid. Physicians typically advise limiting salt intake to 4-5 grams per day (2,000 mg of sodium) or less. Since it can be difficult to determine the salt content of various foods, it is generally recommended that someone with ascites see a nutritionist for advice about various foods to avoid.
For those who add table salt to food, a salt substitute may be ideal. However, choose one without potassium because blood potassium levels can increase with certain medications used to treat ascites. It is important to discuss with your doctor or dietician the salt substitute you are planning to use.
If you don’t already, start reading food labels to decipher their sodium content. Limit packaged, processed and restaurant foods, which are typically high in sodium. Cook with less sodium by choosing fresh or frozen foods, rinse canned vegetables and avoid these high sodium flavorings: soy sauce, steak sauce, onion salt, garlic salt, mustard and ketchup. Some hidden forms of salt to avoid include monosodium glutamate, sodium citrate, sodium alginate, sodium hydroxide and sodium phosphate.
By making a conscious effort to minimize the salt in your diet, you are taking huge steps to reduce the toll fluid retention takes on your body. People who have cirrhosis will feel much better when fluid buildup in their abdomen and legs abate. For people with advanced liver disease, skipping salt is as important as medications prescribed by your physician. With patience, experimentation and a sense of adventure, you can break free of sodium’s culinary limits by discovering the abundance of tasty, salt-free meals. So resist the increasing health problems caused by cirrhosis by squeezing some fresh lemon over your broccoli and tossing the salt shaker in the trash.
References:
Cardenas, Andres, Arroyo, V., Mechanisms of water and sodium retention in cirrhosis and the pathogenesis of ascites, Clinical Endocrinology and Metabolism, Vol.17, 2003.
www.aafp.org, Preventive Strategies in Chronic Liver Disease, Thomas R. Riley III, MD, MS, Ahsan M. Bhatti, MD, American Academy of Family Physicians, 2007.
www.cvphysiology.com, Tissue Edema and General Principles of Transcapillary Fluid Exchange, Richard E. Klabunde, 2007.
www.gi.org, Ascites: A Common Problem in People with Cirrhosis, Raj Vuppalanchi, MD, Naga Chalasani, MD, American College of Gastroenterology, 2007.
www.gicare.com, Cirrhosis, Jackson Siegelbaum Gastroenterology, 2007.
www.gut.bmj.com, Sodium in Preascitic Cirrhosis: Please Pass the Salt, J. Claria, J. Rodes, Gut, December 2001.
www.health.yahoo.com, Eating a Low-Sodium Diet When you Have Cirrhosis, Shannon Erstad, MBA/MPH, Healthwise, Inc., 2007.
www.hepatitis.va.gov, Eating Tips for People with Cirrhosis, United States Department of Veteran Affairs, 2007.
www.medicinenet.com, Primary Biliary Cirrhosis, MedicineNet Inc., 2007.
Good News!! ...is all in the way you look at it.
I wanted to post my last results...I had my echo, and my tricuspid valve regurgitation (mouthful...you can click on it to see what it is but basically I have a leaky heart valve) and it has not gotten any worse!! Whoo hoo. Just gotta keep an eye on it with the portal hypertension, but other than that, just a yearly check-up.
I also got my results back from my CT scan, though I have been a little hesitant to post the results because I don't want to jinx it. However, the most important thing is that (as far as the cancer test is concerned) the transplant is still on the table!
I thought I was a goner when the CT Tech came back in for the last part of the test. He had completely changed from before he had taken a look at Larry. Now, I am not sure how many of you are aware, but lab techs are not allowed to discuss results with you at all, but when I go in...I turn into Cal from "Lie to Me". I am checking all facial expressions, making small talk, checking body language. I wanna know what they know....and sometimes that is not so good, because bad news is all in the way you look at it. He took one look at Larry and just saw a shriveled little guy with lots of scars, but what he didn't see -- what we were praying for.... No masses! So he came in after our first chat about tattoos and work, all of the sudden it was "soooo, how's the weather out there" (I KID YOU NOT) wouldn't even look at me, he rocked slightly from heel to toe but he might as well have been whistling and looking at the ceiling. He was definitely uncomfortable...Tumors everywhere, I thought - for sure - the way he was acting. But NO!! Poor Larry, he's not pretty and he may be smaller then he used to be...but he ain't growing any extra heads!
So what is next....well, the doctor said that this is good news. We don't know if there is any cancer, but if there is, we caught it early and I will be able to still get my new liver. - If cancer had spread to any other organs, they would not consider giving me a new liver. I go in again in a few days to see if my tumor marker levels have raised. (normal range for the AFP marker test is under 9 I believe, and mine was elevated to 327) and then....well, we will go from there.
I also got my results back from my CT scan, though I have been a little hesitant to post the results because I don't want to jinx it. However, the most important thing is that (as far as the cancer test is concerned) the transplant is still on the table!
I thought I was a goner when the CT Tech came back in for the last part of the test. He had completely changed from before he had taken a look at Larry. Now, I am not sure how many of you are aware, but lab techs are not allowed to discuss results with you at all, but when I go in...I turn into Cal from "Lie to Me". I am checking all facial expressions, making small talk, checking body language. I wanna know what they know....and sometimes that is not so good, because bad news is all in the way you look at it. He took one look at Larry and just saw a shriveled little guy with lots of scars, but what he didn't see -- what we were praying for.... No masses! So he came in after our first chat about tattoos and work, all of the sudden it was "soooo, how's the weather out there" (I KID YOU NOT) wouldn't even look at me, he rocked slightly from heel to toe but he might as well have been whistling and looking at the ceiling. He was definitely uncomfortable...Tumors everywhere, I thought - for sure - the way he was acting. But NO!! Poor Larry, he's not pretty and he may be smaller then he used to be...but he ain't growing any extra heads!
So what is next....well, the doctor said that this is good news. We don't know if there is any cancer, but if there is, we caught it early and I will be able to still get my new liver. - If cancer had spread to any other organs, they would not consider giving me a new liver. I go in again in a few days to see if my tumor marker levels have raised. (normal range for the AFP marker test is under 9 I believe, and mine was elevated to 327) and then....well, we will go from there.
Sunday, August 23, 2009
DONATE LIFE ENCOURAGES EVERYONE TO USE THEIR ON-LINE SOCIAL NETWORK TO RAISE AWARENESS FOR ORGAN, EYE AND TISSUE DONATION
DONATE LIFE ENCOURAGES EVERYONE TO USE THEIR ON-LINE SOCIAL NETWORK TO RAISE AWARENESS FOR ORGAN, EYE AND TISSUE DONATION
Shared via AddThis
Shared via AddThis
Below is a great example of how one individual can make a big difference in raising awareness for organ, eye & tissue donation. Dazaree is from Malaysia and is using her social networking skills to communicate around the globe, its just that easy.
So why don't we all use our Facebook, MySpace, web page, personal blogs, twitter for the next 7 days to encourage your family, friends and co-workers to learn more about donation and to sign-up to be an organ donor.
When you post your message, email us with your link so we may be able to post your message on our Donate Life Blog and share your message with our readers.
Get ready, set, GO!
Tuesday, August 11, 2009
A Gift of Life Tag
I am not sure what struck me. But I'm sure it must be a good thing. And this entry is .....*long pause*.....
Truthfully, there are no words to explain this sudden instinct/desire/need/urge. What word should I use? Let's just say I opened my eyes to whole new dimension. Or maybe I woke up feeling just a bit charitable.
But, that's not exactly it.
The feeling wasn't triggered oh-so-out-of-the-blue. I once thought of it.
And yesterday, it crossed my mind again after listening to some organ donor commercial.
And today, I've decided that I should. And so, I will.
I may not turn out to be a doctor. Doctors can't be hemaphobias. *laughs rolling on the floor* So, I guess, I'll give the gift of life in a way that I can.
Organ Donors Pledgers Statistics in Malaysia (until 30th June 2009)
Truthfully, there are no words to explain this sudden instinct/desire/need/urge. What word should I use? Let's just say I opened my eyes to whole new dimension. Or maybe I woke up feeling just a bit charitable.
But, that's not exactly it.
The feeling wasn't triggered oh-so-out-of-the-blue. I once thought of it.
And yesterday, it crossed my mind again after listening to some organ donor commercial.
And today, I've decided that I should. And so, I will.
I may not turn out to be a doctor. Doctors can't be hemaphobias. *laughs rolling on the floor* So, I guess, I'll give the gift of life in a way that I can.
Organ Donors Pledgers Statistics in Malaysia (until 30th June 2009)
 | 132,020 people pledged for organ donation. |
| 92,633 people pledged for all organs an tissues. |
| 9,719 people pledged for organ donation in 2009. |
| Selangor rated 26,347 which is the highest pledgers until now. |
Sadly, Sabah rates among the lowest pledgers (<2500).
Click here to register and join me in this cause. Please let me know if you are joining the circle (register yourself first!):
How to Be an Organ Donor?
I Pledge to be an Organ Donor
1. Dazeree Joan Joannes
2. Are you next?
To visit Dazeree's blog please click HERE
Saturday, August 22, 2009
Liver Lover Quiz
Look at what I made....I think that the info is correct (Just kidding...it is) lol
It was late and I couldn't sleep so don't hurt my feelings -- Click below
Chopped Liver or Liver Lover - quiz created by Ricki
Please take the quiz and post your results in the comments -- if you dare. (cough cough)...now.
It was late and I couldn't sleep so don't hurt my feelings -- Click below
Chopped Liver or Liver Lover - quiz created by Ricki
Please take the quiz and post your results in the comments -- if you dare. (cough cough)...now.
Liver Disease Symptom Quiz
 RICKI's Liver Disease Symptom Quiz Score Report Total number of questions: 12 Total number of correct answers: 12 Your QuizMoz Score: 100% Average Score for this quiz: 59.5% Number of people taken this quiz: 120 Maximum score for this quiz: 100% More quizzes |
Wednesday, August 19, 2009
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.
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
Tuesday, August 18, 2009
Hope for hurting parents
Hope for Hurting Parents of a Sick Child
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.
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.
Thursday, August 13, 2009
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.
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.
Monday, August 10, 2009
My First Follower
Well, call me sentimental....but I was so excited to see that I had my first follower that I had to post it. Thank you so much Aunt Sandie (hehe) for your support and words of encouragement.
...So here is to family, (old) friends, and those we will meet along the way. I may not say it all the time, but I couldn't do it without you!
Sunday, August 9, 2009
Handsurfing
This is my first posting, and I thought it should be somewhat uplifting. It was the first entry in my journal that I started once finding out I have End-stage-liver-disease...So I thought it fitting.
"I have always thought of myself to be somewhat manic. Like a child - sometimes I get so excited about something that I cannot breathe.
Yesterday I was driving away from my MSI appointment at UCI Medical. It was a perfect 85 degrees, I had the window down and a great song came on the radio. I caught myself in the mirror -- I was smiling, bobbing my head to the music and yes, HAND-SURFING on the freeway. At that moment my eyes were wide open, mind clear, and I had no pain anywhere. My skin wasn't tinged yellow at all, but tanned brown from our river trip last week....and I was driving home to my son and husband. I couldn't breathe.
--Yet Wednesday I was told that it is in fact ESLD, and I have a 60% chance of not making it past 2 years, 100% after 5 years -- unless I get the new liver that I need. I'm scared, but happy for this moment...This is my inspiration, I have to make it, there is to much beauty out there for me to miss!"
I am 28 years old and I have been sick for so long now....but I don't know anyone as blessed as I am for being able to appreciate how precious and fragile life is...and I would never have been able to appreciate it as much as I am starting to. So there is hope, and I am going to make it. So lets get ready to fight!!
"I have always thought of myself to be somewhat manic. Like a child - sometimes I get so excited about something that I cannot breathe.
Yesterday I was driving away from my MSI appointment at UCI Medical. It was a perfect 85 degrees, I had the window down and a great song came on the radio. I caught myself in the mirror -- I was smiling, bobbing my head to the music and yes, HAND-SURFING on the freeway. At that moment my eyes were wide open, mind clear, and I had no pain anywhere. My skin wasn't tinged yellow at all, but tanned brown from our river trip last week....and I was driving home to my son and husband. I couldn't breathe.
--Yet Wednesday I was told that it is in fact ESLD, and I have a 60% chance of not making it past 2 years, 100% after 5 years -- unless I get the new liver that I need. I'm scared, but happy for this moment...This is my inspiration, I have to make it, there is to much beauty out there for me to miss!"
I am 28 years old and I have been sick for so long now....but I don't know anyone as blessed as I am for being able to appreciate how precious and fragile life is...and I would never have been able to appreciate it as much as I am starting to. So there is hope, and I am going to make it. So lets get ready to fight!!
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