What is Inflammatory Bowel Disease – Part 3 – Ostomies


So the first thing I want to say about this, is that everything I am going to write is from information gotten online.  I don’t have an ostomy so I don’t have first hand experience  with them.  Forgive me if my information is incorrect or out of date.  In fact, please let me know if something is wrong.

Let’s jump right in.  What is an ostomy?  According to the United Ostomy Association of America, Inc, or UOAA,  an ostomy refers to the surgically created opening in the body for the discharge of body wastes.  A stoma is the actual end of the ureter or small or large bowel that can be seen protruding through the abdominal wall.

There are many types of ostomies.  The most common are Colostomy, Ileostomy, and Urostomy.

Colostomy:   The surgically created opening of the colon (large intestine) which results in a stoma. A colostomy is created when a portion of the colon or the rectum is removed and the remaining colon is brought to the abdominal wall. It may further be defined by the portion of the colon involved and/or its permanence.

Ileostomy:  A surgically created opening in the small intestine, usually at the end of the ileum. The intestine is brought through the abdominal wall to form a stoma. Ileostomies may be temporary or permanent, and may involve removal of all or part of the entire colon.

Urostomy:  This is a general term for a surgical procedure which diverts urine away from a diseased or defective bladder. The ileal or cecal conduit procedures are the most common urostomies. Either a section at the end of the small bowel (ileum) or at the beginning of the large intestine (cecum) is surgically removed and relocated as a passageway (conduit) for urine to pass from the kidneys to the outside of the body through a stoma. It may include removal of the diseased bladder.

Now, the first two types, Colostomy and Ileostomy, are the 2 types most common with IBD.  Urostomy is more with urinary track issues.

Ostomy

You might be thinking, ok, now that a stoma is sticking out of the body where does the product coming out go.  Well, the intestine that the stoma is part of is still active and product will come out so it has to be caught in a pouch.  According to the UOAA there are different types.

Colostomy and Ileostomy Pouches:  Can be either open-ended, requiring a closing device (traditionally a clamp or tail clip); or closed and sealed at the bottom. Open-ended pouches are called drainable and are left attached to the body while emptying. Closed end pouches are most commonly used by colostomates who can irrigate (see below) or by patients who have regular elimination patterns. Closed end pouches are usually discarded after one use.

Two-Piece Systems: Allow changing pouches while leaving the barrier/wafer attached to the skin. The wafer/barrier is part of a “flange” unit. The pouches include a closing ring that attaches mechanically to a mating piece on the flange. A common connection mechanism consists of a pressure fit snap ring, similar to that used in Tupperware™.

One Piece System:  consist of a skin barrier/wafer and pouch joined together as a single unit. Provide greater simplicity than two-piece systems but require changing the entire unit, including skin barrier, when the pouch is changed.

With an ostomy comes many psychological issues.  IBD is never easy on the body or mind and an ostomy just adds to the issues.  The following are some issues according to the OUAA.

A. Patient’s Concerns about Surgery
The reaction to intestinal or urinary diversion surgery varies from one individual to the other. To some, it will be a problem, to other, a challenge; where one person considers its life-saving, another finds it a devastating experience. Each person will adapt or adjust in their own way and in their own time.

Body Image/Self-Esteem Concerns
Permanent and significant changes in the body’s appearance and functional ability may change the way the person internalizes their body image and self-concept.

Fear of loss is normal and facing any loss is difficult. What are patients giving up by having this operation? Is there any gain? How changed will they be? Such thoughts may lead to weeping or depression, or they may be denied.

It is important to understand the impact of the ostomy surgery on the patient’s change in self-image and how they perceive themselves. It may be accepted as the lesser of two evils, or they may refuse to acknowledge its existence, or may hold onto the belief that it is a temporary situation.

Within the rehabilitation process there are times that patients should have the opportunity to express or deny their feelings, about their surgery, the changes in their body or their self-image.

Self-Care Concerns
Patients have to be reassured that they will be taught self-care and that they will be able to master the management process. Basic anatomy and physiology should be explained to new patients, so they can better understand the extent of their surgery. Management options should be offered.

Patients should begin to assist the ostomy nurse with caring for the ostomy as soon as possible. Becoming involved in this process will begin to build confidence and help the patient to regain control of his situation.

Relationship Concerns
Patients may fear that their social role may be changed and that others may not accept them as in the past. One of the first concerns seems to be how to tell others about your surgery, who to tell and when.
• Patients should be prepared to explain their surgery with a few brief statements such as, “An ostomy is a surgical procedure for the diversion of bowel (or bladder).”
• They should understand that they do not have to tell everyone about the surgery. Be selective about who and how much to tell. It may be only to friends who will be supportive throughout the rehabilitation process.

Returning to the work place may present a concern about restroom facilities, interaction with co-workers, and feelings of being “watched.”
• Maybe a few of their co-workers may need to know in the event of an emergency.
• Employability and insurability are issues for some individuals. If these issues develop, seek help from healthcare professionals and/or talk with others who have found solutions to any of these issues.

Sexuality issues are common concerns for the new ostomate. Linked closely to our feelings of sexuality is how we think about ourselves and our body image.
• Any sexuality concerns should be discussed between the patient and his partner. It is likely that the partner will have anxieties due to a lack of information. An intimate relationship is one in which it matters how well two people can communicate about the most personal of human functions, that is, bodily elimination and sex.
• Ostomy surgery may present more concerns for single individuals. When to tell depends upon the relationships. Brief casual dates may not need to know. If the relationship grows and leads to intimacy, the partner needs to be told about the ostomy prior to a sexual experience.

B. Phases of Psychological Adaptation
Almost every patient goes through four phases of recovery following an accident or illness that results in loss of function of an important part of the body. The patient, along with the family, goes through these phases, varying only in the time required for each phase. People may experience the various phases of adaptation in a different order and at varying rates. Some people may skip certain phases entirely and some may move up and down at different times.

These phases are shock, denial, acknowledgment and resolution.

1. Shock or Panic
Usually occurs immediately after surgery. The patient is unable to process information and may be tearful, anxious and forgetful. This phase may last from days to weeks.

2. Defense/Retreat/Denial
This phase may last for weeks or months and delays the adaptation process. During this phase, the individual denies or minimizes the significance of the event and defends himself against the implications of the crisis. You may note the avoiding of reality and “wishful” thinking.

3. Acknowledgment
As the patient moves to the next step of acknowledgment, he begins to face the reality of the situation. As you give up the existing old structure, you may enter into a period, at least temporarily, of depression, of apathy, of agitation, of bitterness, and of high anxiety.

4. Adaptation/Resolution
During this phase, the acute grief begins to subside. The patient copes with their situation in a constructive manner and begins to establish new structures. They develop a new sense of worth. This phase may take one to two years.

With the aid of an ostomy nurse and the ostomy visitor, you learn about living with a stoma.

One thing I can say about ostomies, they are not the end of the world and not the end of your life.  In fact, and I have heard this from many people, is that once you get one it usually gives you back your life.  People with IBD get ostomies because they are in dire straits and can’t live their life.  They are having many problems with their disease and usually in constant pain.  By getting the ostomy, the disease part of their intestines is removed and a lot of their problems are gone.  That isn’t to say all of their problems are gone and with ostomies, a whole new set of problems can occur, with dehydration the biggest one.  But overall, most people can begin to live a pain free life and can once again do things they couldn’t before.

As I mentioned I used the UOAA site for this information.  Their site can be found here http://www.ostomy.org/Home.html.

2015 Super Bowl Pool ~ for The Intense Intestines Foundation


This is something I have been wanting to do for a while but never seemed to make the time for it.  So, this year I am doing it.  I am holding a pool for the Super Bowl.  50% of the money raised will go to The Intense Intestines Foundation, a charity that helps people with Crohn’s Disease, Ulcerative Colitis, and Ostomies.  The other 50% go to 4 winners.

I am selling boxes for $10 each.  I will pick the box for everyone so it will be random.  There will be a winner for each quarter, so 4 winners.

Super Bowl Pool 2015If you would like to buy a box, or 2 or 10, let me know.  To make payment easy, I am using Paypal.  You can send the money to aguywithcrohns@gmail.com.

If you have any questions about this, please let me know or email me at aguywithcrohns@gmail.com.

2014 in review


The WordPress.com stats helper monkeys prepared a 2014 annual report for this blog.

Here’s an excerpt:

The concert hall at the Sydney Opera House holds 2,700 people. This blog was viewed about 13,000 times in 2014. If it were a concert at Sydney Opera House, it would take about 5 sold-out performances for that many people to see it.

Click here to see the complete report.

RIP Karrie Jacobs


Karrie Jocobs

This week I learned again just how dangerous IBD can be.   This week we lost another warrior in the battle against Crohn’s Disease.  Karrie Jacobs, mother of 2 little kids and a wife to a loving husband, died from complications of the disease.  I don’t know the whole story but it is being said that she had some issues with strictures and was having trouble breathing.  She called 9-1-1 and by the time the paramedics got there, she had stopped breathing and had pasted on.

I got to know Karrie from a IBD group on Facebook.  She was very kind to others and had a great heart.  I wasn’t aware she had some issues go on so this was a big shock to me as well as everyone else.  But is also shows just how deadly these invisible illnesses can be.

This isn’t the first time I have seen IBD take away someone.  As many of you know, my Father in Law passes away because of complication due to Ulcerative Colitis.  I never knew before him how IBD can be deadly.  Now that I have learned more about both CD and UC I am seeing that they can be as deadly as any other disease.  What makes this worse is that many people don’t know this.

When someone gets Cancer, they get Chemo.  If you have clogged arteries, there are medicines that you can take to lower cholesterol.  But when it comes to IBD, there is still tons of guess work going on and the meds we take don’t always help.  A lot of the times the doctor “tries out” the medicine to see if it will help.

This all frustrates me so much.  Because of the lack of education and funding for IBD, more people will pass away from the diseases.  People that shouldn’t have to if more money was given into finding cures.  Because so many people have no clue what IBD is, the government doesn’t focus on it.  Instead it is left to smaller charities like CCFA to fund the research.

Recently, I joined up with IIF (Intense Intestines Foundation).  They are a smaller charity that raises money and awareness for IBD.  I decided to join because I would be working on something that is near and dear to my heart….education.  I will be working on helping to educate both patients and medical professionals.  I have wanted to do this for so long now and finally my chance is here.

My personal goal is to help bring IBD into the foreground so that we are finally recognized as a serious illness.  I don’t want anymore people to die from these disease because, reality is, they shouldn’t be.  We need a cure and we need it now.  This won’t come until people get educated and help fund the research.

Karrie, you will be missed by so many people.  Just know, you will be remembered.  You were definitely loved and I want to make sure that no one has to go through what your family is going through now.  A cure will be found….I want to make sure of that.

Day 17 #NHBPM – My Strengths and Weaknesses List


Today we had a choice for our post to list our strengths and weaknesses or make a playlist.  Well, if you read my blog, you will see that I have done the playlist before, so I figured I will do something new..and list my strengths and weaknesses.

Strengths:

My first strength is compassion.  It used to be a weakness but lately, I have had so much of it.  It wasn’t until I had my worst flare that I started to understand my disease.  I never truly understood it before so my compassion towards others wasn’t as strong.  Now that I have had a healthy dose of reality, I feel for everyone.  It has been my driving force behind this blog.

Determination.  When I put my mind to something, I go for it.  This blog is proof of it.  I wanted to really start to help people.  I first started with video but didn’t like it.  Instead of just stopping I decided to try writing.  I tried 2 other sites previously but didn’t like how the blog was coming out.  I could have given up again.  Instead, I kept looking for a good website to use and here I am.

Willing to Learn.  I am like a sponge.  I try to absorb as much information as I can about a subject.  In this past year alone I have learned more about my disease and treatments then I knew about it all my life.

 

Weaknesses:

Stubborn.  My wife will agree with this one.  I am a very stubborn person and sometimes this will stop me from learning things.  If I think I am right or know something, sometime it takes a while to convince me otherwise.  I am trying real hard lately not to be as stubborn.  I think it is working as it has caused me to be more empathetic towards others.

Ignorance.  I say this because for many years I kind of chose to be ignorant about my disease.  I didn’t choose to learn more over time and never chose to learn about new treatments.  Of course, this is changing also and I have decided to open my eyes more.

Lack of concentration.  This I blame on the CD because…….wait…what I was I just thinking… 🙂  Just kidding.  I say this one because sometimes I have a really good idea and try to come through on making it happen.  But then I lose sight of it and just stop focusing on it.

 

Well, I am sure there are more of both strengths and weaknesses.  I am curious if anyone notices something in me they would say is a strength of weakness.  Let me know.  I want to improve myself and would love any feedback.

Day 9 #NHBPM – Tell a descriptive story about a memory


National Health Blog Post Month!
Well, I knew this would happen some time during the month.  Life has gotten in the way and I find myself with not a lot of time to write a blog.  So, for today’s story, I am going to reprint a guest post I did for The Gutsy Generation.  I don’t think I ever posted it on my site so this might be the first time you are reading it.  I really enjoyed writing this one so I am so happy to reshare it with everyone.
I look in the mirror and don’t recognize the man I see there.  The grey hairs are starting to take over on top.  I always seem to have a 5:00 shadow.  And, are those wrinkles??  When did this all start?  I am pushing 40 on the outside, but inside I am still 15.  I can picture it like it was yesterday.
There I am, lying in my bed still in my pajamas.  I am sweating from my fever.  I am no nauseous that I can’t even think about eating…and come to think of it, when did I eat last.  Oh no, time to run to the bathroom.  Man, not diarrhea again.  What is wrong with me?  It’s been a week and I still feel like crap.  So, now it is off to a new doctor that my pediatrician recommended.  It is someone that is a gastroenterologist.  What are they??
Ok, so this exam isn’t bad.  Don’t know what he found so let’s go into his office to hear what he has to say.  What is that you say…possible Ulcerative Colitis.  What is that??  How can I have an ulcer..I am only 15?  You want me to go to the hospital for a couple of days and get test done.  This doesn’t sound good, but I am so tired, sick and weak that I will do anything at this point.
So, this hospital isn’t so bad.  Been here for a couple of days.  Everyone seems nice.  Oh boy, time for another test.  I have to do an upper GI.  What is that??  Ok, drink some liquid and get x-rayed…I can do that.  What flavor do I want?  Can I have vanilla or chocolate…wait…all you have is strawberry??  I hate strawberry.  Oh man, this is horrible tasting.  There is no way I can get this down.  Wait!!!!  Don’t put that tube up my nose to force the liquid down…I will drink it.  I promise.  Just let me wipe the tears away first.  I want this to be over.
What a day…oh, hi nurse.  Enema?  What?  A colonoscopy.  This can’t be good.  But you’re a cute nurse, so I’ll let you give me one.
I will get Demerol and Valium.  Ok.  They will relax me and take away the pain while the scope is in…ok.  Wait…I feel that.  Ow, this hurt.  Oh my god this really hurts.  I can’t watch the monitor because there are too many tears in my eyes.  When do the meds kick in?  Should I be in this much pain?
Been here a week.  When do I get a diagnosis already?  Here comes the dr.  Ok.  IBD.  Ulcerative Colitis.  What is all this?  Thanks for the pamphlet…but what is this disease I have??
That was my short version of how I found out I had Crohn’s Disease.  Yes, I was originally told UC but after finding a good doctor, I was told I had CD.  This was all back in the 80’s, before computers and the internet.  I had no clue what I had.  I read the literature from The Crohn’s and Colitis Foundation of America but it never really hit home of what I had.  I couldn’t talk to others with the disease and I went through my teens and 20’s without any real knowledge of my disease.  I was always told I had a mild case of CD, but going through the journey alone, I had nothing to compare my symptoms to.
Fast forward to January of 2012.  I was in the middle of really nasty flare and going to the bathroom 30 times a day.  I was on Humira 40 mg every week.  I was so depressed that I had convinced myself I was going to need surgery.  I thought I was going to need a “bag” and it hit me….I don’t even know what they look like.  The internet had been around for a good 15 years now and I never looked up or researched anything about my disease…so here I go.
And that is how I turned my life around and became an online activist for IBD.  When I started researching my disease I found a number of inspiring people that showed me that no matter what my disease brings me…it is not who I am.  I have a life to live and I shouldn’t let some symptoms run my life.  I felt like I was entering a new phase with my disease.  I grew up alone with my Crohn’s and there is technology now that can make it so no one would have to ever go at this disease alone.  So that is my mission now.
When I write or talk, it is experience and advice that I spew.  I want to be able to help all the youth out there that have this disease.  I know what it is like to be a kid and have all the problems that come with IBD.  Inside, I am still that little kid.  Because I lost my childhood at 15, I chose to hold onto it mentally.  I have the knowledge of an adult, but the drive of a kid.  I like to joke around.  I like to explore.  I like to have a fun and be carefree.  There is time later to act like an adult.
I started  www.aguywithcrohns.com with one thought in mind…to help anyone that needed it.  I try to give out advice on what I have learned throughout my life so others can learn from it.  I want people to know that they aren’t alone and if no one else listens…I do.  I am here to listen and help.  Doctors don’t seem to truly care much.  Friends seem to get annoyed to fast.  Parents just want to do what they feel like they should be doing to help, whether it works or not.  But online friends seem to listen no matter the situation and are always there.  That is who I am.  I am only a keystroke away.  I might not always have an answer but together we can find it.
As I look back into the mirror, I can still see that 15 year old.  The lines are growing.  The hair is changing.  But I can see him in the eyes.  I see the twinkle.  I have made it 24 years with disease.  No matter what happens…I can live life.  The disease hasn’t beaten me…and it never will.  And that is the best advice I can give anyone….Never let it beat you…you are too strong.

The Spoon Theory written by Christine Miserandino


Almost everyone with a chronic illness has probably heard of the Spoon Theory.  Here it is if you have never read it before.  I belive the originator of it was Christine Miserandino so I am crediting her.  You can check out her website at www.butyoudontlooksick.com

Spoon Theory

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.

Cartoon image of Christine Miserandino holding a spoon
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 Lupus”. 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 eyes, 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 the 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 everyone 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”.