Day two Imuran treatment.

Well, i'm not "sick" but I had the hardest time waking up today! I just couldn't do it. It was like every limb on my body weighed a thousand lbs. My alarm went off at 7:00 am yet I couldn't get up untill 9:30! I had pretty bad acid indigestion yesterday and an upset stomach. Made it difficult to sit through my three hour parenting class. My right eye was swollen almost completely shut when I woke up this morning too! This seems to happen frequently. I wish I knew why every time something like this happens to me it always relates to the right side of my body. So distressing to NOT KNOW. Although, I must admitt that it's pretty heartwrenching to learn what actually IS wrong as well. I know that now. You think you want to know something....until you actually do. Then, well let's just say you can't un-learn something. Life.......C'est la vie.

I'm taking my second day of the Imuran now. Here's to positive thinking while dipping my second foot in the waters......

Heidi

Imuran treatment DAY ONE

It's day one of my Imuran treatment. I take two 50mg tablets each morning. I just took them so I suppose I will keep you posted as to how it affects me if at all. I hope I can handle this one and it doesn't land me in the hospital. Here is the possible effects of the drug.....I just saw that there could be devastating results if Imuran and Cytoxin are taken together. It can kill your liver! My doc's better not try to ADD cytoxin to my regimen while i'm on Imuran! That's what it sounded like he was going to do yesterday! Ugh. :(

Imuran Oral Warnings

Long-term use of azathioprine may infrequently increase your risk of developing certain types of cancer (e.g., skin cancer, lymphoma). This risk is higher in people using azathioprine after an organ transplant and in children/young adults being treated for certain bowel diseases (such as Crohn's disease, ulcerative colitis). You must be closely monitored by your doctor during treatment and regularly afterwards if your doctor stops treatment with this medication.Azathioprine may also cause serious (rarely fatal) blood disorders (decreased bone marrow function leading to anemia, low number of white blood cells and platelets). It can lower your body's ability to fight an infection.Keep all medical and laboratory appointments. Tell your doctor immediately if you develop any of the following signs: unusual skin changes, change in the appearance/size of moles, unusual growths/lumps, swollen glands, swollen or painful abdomen, unexplained weight loss, night sweats, unexplained itching, signs of infection (e.g., fever, persistent sore throat), easy bruising/bleeding, or unusual tiredness.

See also Warning section.
Remember that your doctor has prescribed this medication because he or she has judged that the benefit to you is greater than the risk of side effects. Many people using this medication do not have serious side effects.You may experience stomach/intestinal symptoms such as nausea, vomiting, diarrhea, or loss of appetite. If these effects persist or worsen, notify your doctor immediately. These symptoms may be reduced by taking the medication after meals. Talk to your doctor or pharmacist about other dosing advice that may also help with these symptoms.Although unlikely, more severe stomach/intestinal symptoms (e.g., severe nausea/vomiting/diarrhea, stomach/abdominal pain) may occur as part of a very serious allergic reaction. Seek immediate medical attention if you have severe stomach/intestinal symptoms or other symptoms of a serious allergic reaction which may include: fever, shaking chills, rash, itching/swelling (especially of the face/tongue/throat), severe dizziness, trouble breathing, cough, new or worsening joint/muscle aches, dark urine.Tell your doctor immediately if any of these unlikely but serious side effects occur: weakness, muscle loss, vision changes, hair loss, cold/numbness in the fingers, mouth sores, difficult/painful swallowing, greasy stools.Seek immediate medical attention if any of these rare but very serious side effects occur: yellowing eyes/skin, swelling/extra fluid around the abdomen, vomit that contains blood or looks like coffee grounds, black stools.This is not a complete list of possible side effects. If you notice other effects not listed above, contact your doctor or pharmacist.In the US -Call your doctor for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088.

Before taking azathioprine, tell your doctor or pharmacist if you are allergic to it, or if you have any other allergies. This product may contain inactive ingredients, which can cause allergic reactions or other problems. Talk to your pharmacist for more details.
Before using this medication, tell your doctor or pharmacist your medical history, especially of: kidney disease, liver disease, blood disorders, decreased bone marrow function, history of cancer (such as lymphoma), active infections, certain enzyme disorder (TPMT deficiency).Do not have immunizations/vaccinations without the consent of your doctor, and avoid contact with people who have recently received polio vaccine by mouth or flu vaccine inhaled through the nose.Since this medication can increase your risk of developing serious infections, wash your hands well to prevent the spread of infections. Avoid contact with people who have illnesses that may spread to others (e.g., flu, chickenpox).Use caution with sharp objects like safety razors or nail cutters, and avoid activities such as contact sports to lower the chance of getting cut, bruised, or injured.Kidney function declines as you grow older. This medication is removed by the kidneys. Therefore, the elderly may be more sensitive to the effects of this drug.This medication is not recommended for use during pregnancy. It may harm an unborn baby. Consult your doctor for more details. It is recommended that men and women use two effective forms of birth control (e.g., condoms, birth control pill) while taking this medication. However, this medication can decrease the effectiveness of intrauterine devices (IUDs). This can result in pregnancy. Talk to your doctor about other effective birth control choices.This medication passes into breast milk and may have undesirable effects on a nursing infant. Therefore, breast-feeding while using this drug is not recommended. Consult your doctor before breast-feeding.
 

Bad news today.

So this is not the kind of news a person wants to ever hear from their doctor. I (in a way) still feel like i'm dreaming. Like it's not real. The results of my MRI were abnormal. Apparently, I have white plaques through my frontal lobe. Most likely "Lupus" plaques, but my rheumatologist still does not like the word "Lupus" for me and so uses it rarely. He knows what it is, I think he's just giving me "time." I was told today, that I must start my Imuran treatment immediately and that I will most likely begin Cytoxin/Rituxin chemotherapy infusions very soon to slow the progression. Remember there is NO CURE (thanks to a lack of funding and awareness.) So this is merely an attempt at slowing the disease progression. HONESTLY...I'm scared guys...... I don't know how to feel and I'm just not prepared for this at all. As if you ever COULD BE. There's no operation to remove the problem....no antibiotic to fight it off. It's just there. It can't be reversed....the damage that is done cannot be repaired. It will just spread like a cancer through my brain until they can slow it with the chemo. Nevertheless, it will just continue....no matter how slow....until we find the cure. My kids are just babies. I'm not ready for this. There's so much I want to do still. it's affecting my memory, my ability to move freely, bathe, care for myself. It's horrible. I'm PISSED OFF! I have done my best on this planet to be a good person, to help others, to teach and to learn. I feel cheated right now, like i've been charged with a crime I did not committ! This is stealing my life from me and I'm ANGRY! I'm just so ANGRY!

Got my answer I guess. It's all part of Lupus. Just means I'm active in full flare.

The swollen legs and feet and shortness of breath are symptoms of Lupus activity.

Swelling.....should I worry?

Okie dokie....so I have been going through some pretty severe shoulder inflammation and pain as of late. So bad that I can't use my left arm. The right one aches but nothing like the left! Today, I noticed my left leg was swelling when I saw that my left foot was swollen so much you couldn't see my ankle. My right one seemed okay though. I've had some difficulty breathing with exertion. I wheeze pretty bad and breathe like I've been running just after walking from one point to another. Doesn't even have to be a long jaunt. Just from the living room to the bathroom! I wonder now if it's at all related. I have heard that fluid build up in and around the lungs and heart can be a factor in Lupus. I guess I need to start asking more questions. I am scared though, I must admitt. I don't want them to draw blood gasses on me so I'm afraid to tell them how I can't breathe. But at the same time, with my history of pulmonary embolism, I have to watch these signs carefully. Momma had several blood clots I guess, so it's not unheard of. This sucks :(  Wishing I could just have my life back.

Left ankle bone non existant!

Can push the fluid with my finger.

Right ankle bone visible.

Left leg/ankle -vs- right

foot swelling out of my shoe

swelling

Left leg is noticably bigger than right.

The Spoon Theory
by Christine Miserandino www.butyoudontlooksick.com

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 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".

© 2003 by Christine Miserandino Butyoudontlooksick.com