World Ostomy Day

A fellow activist asked if I could post something about World Ostomy Day and I thought, why didn’t I think of this.  I don’t have an ostomy but many of my online buddies do and my father in law did also.

So, on Oct 6, 2012, the world will be celebrating those people with ostomies.  Go out and help spread the word and if you have one, show it off.  Be loud and proud.

There are a bunch of things going on sponsored by the UOAA (United Ostomy Association of America, Inc) and can be found on their website here

If you can’t celebrate in the real world, you can do it in the virtual world.  One group on Facebook  is throwing a virtual picnic.  It can be found here
To everyone with an appliance – you are strong and brave.  Show off your beauty on Saturday and let the world know that you won’t go down fighting.

Life on LDN – Week 1

Well, it has been 4 full days on Low Dose Naltrexone (LDN) and I thought I would give everyone an update. 

From what I was reading online I guess a lot of people build up to the normal dosing.  Sadly, since my GI didn’t know too much about the drug, I went right to the full dose of 4.5 mg.  I have had some side effects from it but nothing I can’t handle.

The first major side effect is insomnia.  The medicine kicks in around 3 in the morning and gets the endorphins jumping.  That is what wakes you up and keeps you up.  For 4 nights now I haven’t had much sleep.  Once my body gets used to the drug this should stop and I can not wait for that to occur.

Another side effect some people get on the 4.5 mg dose is a headache and I have had some on and off.  It isn’t so bad and I haven’t even thought about taking Tylenol for it.  Another side effect which I have read about are nausea and lack of appetite.  I get this later on in the day around late afternoon and night time.  Hopefully this too will go away.

Overall, I don’t feel normal right now.  I have been very irritable and agitated but I think this is due to the lack of sleep.  I am not my normal self and even my wife has noticed it, but more important is that I have noticed it.

As far as the Crohn’s go, I haven’t had it bad so I can’t say there is an improvement, but it hasn’t gotten worse.  I have had a little more gas but I don’t know if that is because I am getting better or worse.

So…..for the first week, I am having a rough time of it, but I won’t give up or give in.  I am a fighter and will keep going.  Hopefully week 2 will be better and I can get some rest.  The weekend is upon us so I can rest a little. 


Goodbye Conventional, Hello Unconventional

3 Weeks ago, my treatment for Crohn’s made a change.  I took my last shot of Humira.    That was my final attempt at a conventional treatment.  Since 1988 I have been treating my Cronh’s with conventional medicine.   I have run the gambit and tried every catagory of medicine there is with no luck.  I have a mild case of Crohn’s and yet I still can’t get into remission.  My gluten-free diet has helped but I am not 100% there yet.  Humira was the last real medicine to try and that has now failed.  So, it is time to get off the road and look for another route.

After doing some research I found that Low Dose Naltrexone (LDN) was being used as a treatment but as far as IBD is concerned, it is still experimental.  There are a couple of small studies done and they all have looked promising.  For anyone that doesn’t know what LDN is, Naltrexone is a medicine usually used in high doeses of 50 mg.  It is used to block the feelings of opiates.  Mainly, the drug is used to help people get off drugs.   It blocks the feelings they get from the drugs so they can take something like heroin and not feel the effects from it.  LDN is the same drug only in a low dose form..4.5 mg.   LDN helps to boost the immune system and has been shown to help fight inflammation.  No one is sure just yet how it is fighting the inflammation which is why it hasn’t been approved yet.  More studies need to be done but a lot of doctors are now starting to get behind this drug.

One theory I have as to why this hasn’t been looked at widely yet is that it is an inexpensive drug.   You can get a 30 days supply for $15 (without insurance).  That means that no one is really making money off of why would anyone reasearch it.  There is no money to be made.  A second theory which I just thought of yesterday is that a lot of the meds for IBD lower the immune system.  On the whole, the scientific community has been looking at lowering the immune system to treat IBD.  LDN raises and helps the immune system.  This is going against what the scientist have been researching…so this would prove everyone wrong.

When I first talked to my GI, I mentioned going off of Humira to start LDN.  He had never heard of LDN as a treatment and was hesitant.  Yet, he wanted to do research on it.  I gave him some time and about 3 weeks ago he told me that it was experimental but he would try it out.  He has no other patients on the med so this is new ground for both of us.  I am very happy that I have a GI that has an open mind and isn’t scared to try unconditional methods.

Yesterday, I got my script and was very happy.  I was nervous to take the pill as I don’t know how I am going to react to it.  The first couple of nights it is said it can cause insommnia and I did wake up at around 3:00 am and couldn’t fall back to sleep.  This is suppose to go away after the body gets used to the drug and in fact it is suppose to help you sleep.  I can’t wait until I get used to the drug.  Overall, there are no side effects which is why I wanted to use this med.  The worse that can happen is that it doesn’t work and I get a bad flare.

The only other major effect to this drug, is while I am on it, I can’t take opiate pain killers.  This worries me in case I ever have to have emergency surgery but for my colonoscopies, I can just stoip taking it for a couple of days.

I know a lot of people don’t know too much about LDN so I am going to try to write about my experiences as they happen.  So on day one, I am normal but tired.  No sleep will do that.   Day 2 will probably be the same.  Wish me luck as I want the insommnia to pass fast and hopefully by the weekend I can sleep again.

Stay tuned for my journey down this new road.  I am sure it will be a great adventure.

Gluten Free Mac & Cheese

I wanted to share with you another recipe I have that is gluten-free.  I started making this recipe a couple of years ago when I was on Weight Watchers for the 2nd time.  This is one of their recipes but I have modified it a little.  Originally this wasn’t a gluten-free recipe but as my lifestyle changes, so do my recipes.  For any vegans, you can also modify this using a dairy free cheese and soy or almond milk.

Gluten Free Macaroni & Cheese – Serves 2

  1. 6 oz Uncooked Gluten Free Elbow Macaroni – you can use whatever brand you like
  2. 1 cup Fat Free Milk (can be lactose free, soy, almond, or regular)
  3. 1/8 cup Gluten Free All Purpose Flour
  4. 1/4 tsp Kosher Salt
  5. 1/4 tsp Onion Powder
  6. 1/2 cup Low Fat Shredded Sharp Cheddar Cheese

Cook pasta in water according to package.  Drain and return to pot.

While pasta is cooking, in a large saucepan, whisk together milk, flour, salt and onion powder until blended.  Bring to a boil on a medium – low heat, whisking frequently.  Reduce to a low heat and simmer, stirring often, until thickened (about 2 minutes).  Remove from heat and whisk in the cheese.

Add sauce to the cooked pasta, toss to coat, and serve.
I sometimes add cooked broccoli to this.  You can also add meat to this dish like cubed ham.  If you do, I would reduce the amount of pasta to 4 oz then.


Feel free to play with this recipe as  there are a lot of things you can do with it.  Some people add hot sauce or red pepper flakes.  Some will add bread crumbs and bake it.  Whatever you do, enjoy it like I always do.



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

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”.

Advice For A Terrific Life

I was going through an old blog I was doing and I found this post that I made.  I am sure I copied it from someone else..but I thought it was nice and I wanted to repost it here. 

  1. Give people more than they expect and do it cheerfully.
  2. Marry a man/woman you love to talk to. As you get older, their conversational skills will be as important as any other.
  3. Don’t believe all you hear, spend all you have or sleep all you want.
  4. When you say, ‘I love you,’ mean it.
  5. When you say, ‘I’m sorry,’ look the person in the eye.
  6. Be engaged at least six months before you get married.
  7. Believe in love at first sight.
  8. Never laugh at anyone’s dreams. People who don’t have dreams don’t have much.
  9. Love deeply and passionately. You might get hurt but it’s the only way to live life completely.
  10. In disagreements, fight fairly. No name-calling.
  11. Don’t judge people by their relatives.
  12. Talk slowly but think quickly.
  13. When someone asks you a question you don’t want to answer, smile and ask, ‘Why do you want to know?’
  14. Remember that great love and great achievements involve great risk.
  15. Say ‘bless you’ when you hear someone sneeze.
  16. When you lose, don’t lose the lesson.
  17. Remember the three R’s: Respect for self; Respect for others; and Responsibility for all your actions.
  18. Don’t let a little dispute injure a great friendship.
  19. When you realize you’ve made a mistake, take immediate steps to correct it.
  20. Smile when picking up the phone. The caller will hear it in your voice.
  21. Spend some time alone.

Deconstructed Eggplant Parmesan – Gluten Free

As promised, here is the recipe for a delicious eggplant dish.  First, I want to say that I did not create this recipe.  I have changed it a little and the original can be found here  I have found a bunch of good gluten free recipes on her website (sorry, I don’t know the name of the woman who writes this blog).  You can follow her recipe and it is really good.  I just wanted to tweak it a little to match my taste palate.  Also, one note…I wanted to post pictures of the cooking process but I got so wrapped up in making the dish I forgot to take pictures.  I do have one of the finished dish that I will post at the end.  So, here it is:

Serves 3

1 eggplant peeled, sliced in 1/2 inch rounds
1/2 Cup Almond Milk – Unsweetened

2/3 cup Garbanzo and Fava Bean Flour (mixed with a bit of salt, pepper, garlic powder, and onion powder)


3 tomatoes, chopped, with their juice
1 carrot and 1 celery stalk, diced
1/2 onion, diced
1 Tsp garlic paste 
1/2 tsp dried basil, oregano, and parsley
salt and pepper
fresh basil (garnish)

Preheat your oven to 400 degrees. After you slice your eggplant, set up your “breading station.” You will need one bowl with your milk, a plate with your  flour mixture, and a tin-foil-lined, olive-oil sprayed baking sheet. Dunk your eggplant in the milk, coat it with the flour and place on the baking sheet. Spray all the tops with olive oil, and then bake for 40 minutes until golden brown, flipping half way through.

Meanwhile, on the stove, saute your onion in 1 tsp EVOO, with salt, pepper, dried oregano and basil. Add your carrot and celery, and let it soften, about 6 minutes. Finally, add in your tomatoes and garlic. Let them cook for about 3 minutes. Mash with a potato masher, or put in the food processor to create your desired consistency.

After you have pureed your tomatoes, place back onto the stove and put a small flame under it.  Bring to a small boil to reduce out some of the liquid.  Taste it and reseason it if you need to.

When the eggplant is done, place 3 slices on a plate, layering them over each other.  Spoon some of the tomato sauce on top of the eggplant.  Place the basil in the center for garnish and serve.

Now to make this truly a parmesan you need some cheese.  I didn’t do it this time, but you can add either shaved parmesan or romano cheese to this.  You can also add some of the pearl mozzarella balls to this.  Either would make a nice garnish and addition to the meal.