My Immune-System Kicks Ass!!!

Sometimes I feel like such a wimp.  And not just in the “I feel like a victim of my disease” kind of way.  No, right now I’m looking at the bigger picture, about being a wimp in the evolutionary sense: In the world where the fittest survive, I’m a vulture’s potential meal.  Sure, we now have medicines that keep people like me alive and healthy-ish.  But sometimes I wonder…if I came from a pre-antibiotic world- would I still be alive? 

For the most part I feel that this really doesn’t matter.  I am not in that world but rather in a new world fighting it out with different armor.  But there is a small part of me that for some reason likes to think that I would have stood a chance back then.  I can’t be the only one who thinks about this- isn’t this the whole premise of the show “Survivor”?

Fortunately, there’s the hygiene hypothesis that cheers me up and reminds me that I am not necessarily part of a group of people with a genetic mutation that makes me vulnerable to sickness and death.  No!  Instead, it’s possible that I have a really kick-ass immune system!  That in fact, I may come from some elite group that would have had some advantage!  I don’t have a “faulty” immune-system, it’s just that it’s totally trigger-happy and I’m the only one it’s shooting at. 

I have been guilty of looking upon people with severe allergies as the “fragile” ones in our world.  One speck of something as harmless as a peanut could be their demise.  If the hygiene-hypothesis is true, however, the ones we see as fragile today may have been the ones who would have avoided sickness and outlived others back in a germ-infested world.   And apparently, it’s not just invading germs that were staved off, the immune-system is in fact able to recognize unusual cells.  I have heard that people with allergies are less likely to develop cancer since their immune systems are hyper-sensitive to any abnormalities within the body.  So, the next time anyone ever complains about our peanut-free schools, blame the lack of germs, not the child.

I will probably turn down any offers to join next season’s cast of Survivor, mainly because I don’t think I’d be great at forming alliances and then back-stabbing my so-called friends.  But based on the hygiene hypothesis, I can now imagine that if I travelled back in time to some ancient civilization, it wouldn’t be the germs but rather the saber-toothed lion that would do me in.

http://www.sciencedaily.com/releases/2013/03/130322104255.htm 

http://well.blogs.nytimes.com/2011/07/18/really-the-claim-allergies-reduce-the-risk-of-cancer/

The Prednisone Monster

In a past blog post, I compared prednisone to a badass boyfriend that I just keep going back to.  When I am not on prednisone, I do whatever it takes to not get back on it, but then eventually, I have to give in.  Starting prednisone again feels amazing in so many ways.  It starts working within hours and eases the inflammation and a surge of energy wakes up the rest of the body that has been so drained.

Though prednisone is still very much part of my life, the badass boyfriend, fortunately is not.  Instead I have a wonderful, supportive husband who is a positive force in my life.  While he is happy to see my health improve on prednisone, he is not happy with the "new me".  Natalie on prednisone is argumentative, super-sensitive and highly emotional.  He hates it but puts up with it.

At times, I feel very disturbed by the fact that others notice a difference in my personality.  I can remember an old boyfriend being very turned off by me and saying, "you're like an animal!".  Or when I do get upset about something, and my husband points out that I am reacting this way because of the prednisone.  This bothers me because I feel like my words and feelings are given less importance.  It's comparable to an emotional woman being referred to as "on the rag" or PMSing.

Emotion is real and it comes from somewhere.  It is not swallowed within those little white pills.  I like to think that prednisone gives me the opportunity to stand up for myself a little more and address issues rather than ignore them.

It's very strange to think that a medication can alter your personality so much, or that we are so controlled by our hormones.  Prednisone is a steroid drug which, from what I understand, causes more testosterone in your system which accounts for many of the physical and emotional changes in your body.  I like to think the prednisone just makes me a little more macho.  It's still me, just me with balls!

Laughing My Way Through "P"ooster Park

I've had a bad week.  I started to describe my distress in a post but I just got grumpy and introverted and it reflected in my writing.  What I really need now is a good laugh so I thought I would write about my  adventure last month in Oosterpark, Amsterdam.

I don't have an easy time laughing about Crohn's Disease.  I applaud and admire people who use humour to deal with adversity in their lives and I do find shit humour pretty funny when done in a original way.  Unfortunately, when it comes to my embarrassing and disgusting situations, I am more likely to feel shame and victimized by my disease.  But when something embarrassing happens when you're with a seven-year-old, there's not much you can do but laugh!

As many people with chronic conditions will say, traveling can cause distress in your body and symptoms that had not been there before your departure will be there to meet you upon your arrival.  The symptom that met me in Amsterdam last month was URGENCY!  Though some people complain that Europe is terrible for public washrooms, I fortunately have a sixth sense when it comes to finding the best and/or FREE of charge bathroom within a block range.  For most of the week I was doing well  and avoided any disasters.  Until one night, after an evening with friends dining on lamb curry, drinking red wine and licking the plate of my rich chocolate cake, it was time to go home.  It was a beautiful night when I walked with my family through Ooster Park heading toward our apartment.  I got that feeling in my gut that said, "you don't have much time...", I thought at first that I could make it out of the park but then the feeling got a lot stronger, a lot sooner than usual... I knew I wasn't going to make it out of the park.  As I crossed the bridge, I made a rash decision... I jumped in the bushes and let it go!  Within seconds, I popped right back up and instead of being humiliated, I walked the rest of the way through the park laughing hysterically about the whole ordeal with my son and husband.

The next day, we were still laughing about it with my friend, our host from the night before.  I said it was a sign of a really good meal. She joked that my husband should have picked it up in a plastic bag and disposed of it in the dog poop bins.

We decided that from now on, the park will be known to us as "P"Ooster Park, the park where I marked my territory.

Patience, Patient!

I am trying to be patient.  My gut is needing some attention.  I tried to be proactive and ensure that all my blood work was up to date so that if my symptoms worsened help was just a phone call to my doctor and a fax to my pharmacist away.   But as usual in the medical system, it's not working so smoothly.  I contacted the nurse who works with my doctor and she called me back after two days and told me that my doctor is on vacation at the moment and upon his return next week she would ask him to look at my file and let me know his decision.  That was last week.  It is now Thursday evening and I haven't heard from her.  I've been reluctant to call her back since her voicemail message says, "please leave me ONLY ONE message, I will get back to you".  It is so hard to know when it is time to be pushy and fight for yourself and your needs and when you should just wait.  Is patience a virtue or is it a means of delaying treatment and allowing symptoms to worsen?

Fooled by the Snake Oil Salesman

The other day, I received a package in the mail! Despite the fact that I had placed the order for this package and that I knew that the box contained six bottles of water, I was still excited. These bottles of water are not plain water from the tap (I really hope they arent’) but are actually ‘fractionally distilled aloe vera juice’. Aloe vera juice is meant to contain a powerful natural anti-inflammatory which I believe could benefit my gut. A side-effect of drinking plain aloe vera juice is diarrhea which is what many of us with IBD are trying to avoid. This aloe vera juice, however, is meant to be more tolerable because the diarrhea-inducing agents have been removed while all the anti-inflammatory properties are maintained. The aloe vera juice is really easy to swallow, since it tastes just like water!

I like to think that I am someone who is not so easily fooled but when it comes to my health I really want to BELIEVE! As I pour my aloe water into a cup at night before bed, my husband gives me a smirk that means, “You know you have spent a fortune on water, right?”. He’s tasted and confirmed that it is just water. Ohhh, but the company addresses this on their website:

Q. Doesn’t distillation just turn it to water? 
A. Georges is fractionally distilled, meaning it is broken down into various parts, with the undesirable elements removed. It is then re-assembled. Products such as Jack Daniels & Petroleum are distilled products and would never be confused with water.

See, there you have it, it’s not just water, right? Well, it’s what I want to believe for now.

What everyone, even the best intentioned in the health industry know is that when we are sick most of us will do and pay almost anything to get better. Sometimes we know we’re being duped but it takes us time and money to admit it to ourselves. One time, I went to see this supposedly wonderful homeopath who told me that we would get to the bottom of this problem (my disease) and I would be feeling better soon. I left her office feeling like I was in good hands… until I got to the receptionist who handed me a bill of $600 for the first visit, the remedies, and the lab tests. The lab tests came up with nothing, and the remedies didn’t work but the homeopath told me that through weekly telephone appointments we would find the right one. After three telephone appointments (all billed of course) I suddenly realized that something seemed wrong. Each week she was recommending a new remedy and I was running out and getting it, spending more money, and paying her fee each time. Eventually, I told her that since I was not seeing any progress, I was done. Though some may think I was paying an honest price for a professional service, I really felt that despite any good intentions she might have had, this homeopath was exploiting my vulnerability and wishes for health.

I feel I should invest a little money trying new products, especially if they are suggested by a reliable source. Though knowing who is a reliable source is not easy, I can at least say that I am far less trustful than I used to be. Today, I feel comfortable with my decision to try the aloe water, though I know I may laugh at myself further down the road, knowing I’d been duped again.

Glamour Guts Is Here!

A major part of healing when you have a chronic disease is getting over the stigma and isolation attached to your illness. In the past I really felt that other people with Crohn's Disease were not like me, I had no desire to reach out to anyone. I always felt that communicating with others about my disease would mean putting myself in a victim role and that didn't appeal to me. In truth, I was in that victim role every day but putting on a brave face in public. Here is a movie about Inflammatory Bowel Disease that was very inspiring to me. When I saw this film, I realized that I could open up about my disease in fun and creative ways, and maybe even have sense of humour about it.

Glamour Guts is a 3 minute silent film by fellow Canadian Jasmin Oore about living a glamourous life with intestinal disease. I was shown this movie a couple of years ago when my friend Dana was at my house and she told me about her friend's friend who made a movie about Crohn's Disease that won an award for a CBC short film contest. I laughed so hard watching it; all the pain and embarrassment that I had felt over the years was suddenly so hilarious! We were able to find it online at that time since it was on the CBC website but when I first launched this blog it was no longer available. Until now! Jasmin has put it on youtube so that we can all have a good laugh about living with with IBD... Enjoy!

http://www.youtube.com/watch?v=q2skg1f4HAM

Inflamed and Inflated- being pregnant with Crohn's Disease

I've got a fierce competition going on in my belly. My Crohn's Disease, as usual, is demanding lots of space and attention but now I also have a little baby there who is pushing and kicking and is definitely letting me know he's there. This is my second pregnancy but my first time with active Crohn's Disease. With my first, I was so adamant about following all the expert advice and keeping my body as "pure" as possible so that the baby could grow in a non-toxic environment. Well, if my son really benefited from growing this chemical-free environment then this new baby is certainly getting the short end of the stick. I am now taking Imuran and some prednisone to keep the inflammation down. Both these drugs are deemed safe during pregnancy by my doctors. When I went to pick up my first prescription of Imuran, I caught the pharmacist staring at my pregnant belly, looking concerned. As she explained how to take the medication, she told me that no one else should touch the pills as they can be very toxic. When I came home from the pharmacy, I broke down crying.

In her book, Listen to Your Gut, Jini Patel argues that one should control their Crohn's Disease using an elemental diet (consisting of her Absorb Plus Powder) and even during pregancy she thinks that it is better deprive the baby of some nutrients than to expose the baby to prednisone. I'll admit that I too was thinking in the early stages of my pregnancy that it would be better for the baby to be in a chemical-free environment, even if it meant that my Crohn's might act up. But when I went to see my doctor after having a blood test, he told me that I was not absorbing enough protein and this is not healthy for a pregnancy. At this point, I just made the decision that I would give myself over to the professionals and do whatever they said.

http://ventedspleen.com/blog/category/comics/crohns-comic/

This is a kick in the pants post!

I stopped blogging last summer, mainly because I was in my first trimester of pregnancy and constantly exhausted and feeling no passion for anything. I keep saying that I want to start again but somehow just keep putting it off. So this post is a kick in the pants to get me started again. There, I've done it!

Feed Me!

I love food. Rarely during my 20 years of having Crohn’s Disease have I experienced loss of appetite and how fortunate! Without my appetite a huge drive and energy within me disappears. I cook a lot, and consider myself a pretty good cook. I eat with gusto and at ferocious speed (though I work on controlling this!). In my last post, I wrote an ode to Prednisone in which I should have mentioned how I love when I’m on Prednisone and food just tastes even better, my hunger for food is stronger and my passion for it is beastly! Thankfully, I love healthy food, or food that most would consider healthy.

When you have Crohn’s it’s hard to distinguish what is actually good for you. I have tried many diets for Crohn’s Disease and each diet has been so different from the others. When I am at my worst, I can find it so hard to prepare myself food and I second-guess everything I’m about to eat thinking that the food might harm me. I could pick up any food from my kitchen and I guarantee that some diet that I have followed at some point has listed it as a food I should avoid. When I’m like that I just wish that I could lie down and someone would come and feed me delicious food that will help to heal me. Even now, when I’m feeling healthy, I feel like I can eat anything and when I do, I don’t have any immediate symptoms, but I still wonder if I could be promoting a future flare.

I read somewhere that excessive dieting for nutritional purposes is now considered an eating disorder which is significantly on the rise. I have seen this first hand last year when my sister started doing a very strict diet for a condition that she is dealing with and she lost about 40 pounds within a couple of months and looked anorexic for a while until she started easing up on the diet. I have also been waif-like during diets and have experienced such low-weight and low-energy from lack of absorption of calories and protein from an inflamed gut and from lack of food intake.

One of the most difficult aspects of having a chronic illness has been deciphering who to trust for nutritional information. The medical community takes a one-size-fits-all approach to diet (the food pyramid) whereas the alternative health community truly believes that diet is the answer to your problems. The medical community mostly ignores diet as it is too difficult to monitor and there is very little incentive ($$$) to explore nutrition as medicine. In contrast, many in the natural health community base their recommendations on assumptions. They believe that foods that are harmful or helpful for other conditions must be harmful or helpful to Crohn’s patients. I have spent way too much money just to have naturopaths tell me that I need to do an anti-candida diet and to take all dairy and gluten out of my diet. They recommend eating lots of whole grains and leafy greens, which I have since found out are terrible for me. If I were to go in complaining of headaches, I would probably be given the same recommendation.

As I am and getting older and wiser, I am starting to feel I have more of an understanding of what is right for me. I am cynical of both the medical community and the natural health community and I am learning to take what I need from both. I generally follow a low-fat, low-roughage, low-sugar, low- dairy diet. Low seems to work for me a lot better than no and allows me to get adequate calories. Since I am not referring as much to outside sources for food information, I find myself feeling less guilty about what I eat and am actually getting better at controlling what I eat all the time rather than going through cycles of eliminating and binging. Slowly I am learning that when you don’t know who to trust, trust yourself.

Ode to Prednisone!

My dear prednisone, you have such a horrible reputation and you can be so bad for me but how I love you so! I am totally off of you as of today, but I have positive memories of our time together! I was so reluctant to take you back when my doctor recently prescribed you for I felt like this was a real step backward. You are the drug that they have always been prescribing for Crohn’s disease but their preference is for other fancier more high-tech drugs since you're known to be so bothersome and debilitating when you people spend too much time with you. When I left you for Humira, I felt that my days with you were behind me. I wasn’t so thrilled about this new drug but I didn’t have much of a choice and felt that I would go on it for a while to let the tissue heal and then go off medication altogether. It has now been three years that I’ve been with Humira and my plan didn’t quite pan out. While the Humira has really improved my quality of life and probably helped me avoid surgery, it just hasn’t done enough and I have an area of my bowel that is just unresponsive to it. But you! You know how to reach deep into my bowels and soothe me in ways no other drug can!

After my recent appointment at the hospital, the words uttered by my G.I. doctor “persistent inflammation” kept playing in my head like a broken record all night long. I woke up the next morning and decided that I would take the plunge and take you back. As my doctor said, taking you and Humira at the same is something I haven’t tried before. Within days I noticed a difference. The second and third week was the best, you settled things down and I got that high that I always get when I’m with you, I would lie in bed at night and feel like I could jump up and go for a run outside. With only a couple of hours sleep I woke up feeling fresh and energized. Those were good times, prednisone!

As I started distancing myself from you more and more, I felt healthy and prepared for life without you. I miss the energy boost that you gave me, but I always knew that it was a fleeting. What seemed like a step backwards, turned out to be a leap forward. I feel that I am in remission thanks to you and I am prepared to take you back again if I have to but hopefully we won’t be seeing each other for a while, it’s better that way.

Let Me Be a Guinea Pig!

I don't want this blog to go too much into therapies and treatments but I do want to mention my experience today because it has me feeling pretty hopeful...

I have been on Humira for almost three years now, way longer than I wanted to be on it. I have to say that it has managed my symptoms pretty well up to a point and I have had very few side affects aside from mild coughs that take a long time to go away. I do worry about the long-term effects of this drug though and am always curious about new treatments.

I recently read that a new study has been published showing promising results for the use of low-dose naltrexone for the treatment of Crohn's Disease. Naltrexone is drug that is used to help severe alcoholics detoxify and a low-dose form is being used to treat auto-immune conditions such as MS and Crohn's. I've been doing some research and I can see that many Crohn's patients in the States have been trying it, and it seems to be fairly easy to get your hands on. However in Canada, this is not the case. The Crohn's and Colitis Foundation of Canada states that there is not enough data yet to support its use and therefore it should not be prescribed to patients yet. That being said, LDN is well known to be a safe drug. From what I understand, since it is a drug that has been on the market for years, there is not enough money to be made by pharmaceutical companies and so there is very little interest in this drug. Which means that I could be waiting a very long time...

I spoke about LDN with my doctor today. I knew that he would say that there's not enough evidence to support it yet. I asked him, "so, is that it? I can't get this drug even if a say that I want to be a guinea pig and try it out?" He agreed that trying it is pretty low risk. He didn't prescribe it to me because he can't but I am feeling pretty positive as I do have a potential way of getting it now, which I don't want to discuss until I can be sure I won't be getting anyone in trouble.

I know that I shouldn't get excited yet. Firstly, I haven't got a prescription yet. Secondly, who knows if it will work for me? But it is exciting for me to be getting my hands on a drug that is inaccessible due to policies and red tape. I am feeling hopeful because I have tried so many alternative therapies and I don't want to say nothing has worked but nothing has worked well enough. Meditation, supplementation, herbal enemas, bring it on! I know that I need something powerful to open the door to all these therapies and let healing happen. LDN is safe, is proving to be very effective in preliminary studies and has very few side effects aside from some sleep disturbances in the first few weeks. I prefer to take a drug like LDN that improves immune functioning than taking Humira that actually weakens your immune system. If I do take it I will have to go off Humira but I'm willing to take that risk.

I spoke to my mom on the phone tonight and told her the story of going to see the doctor. My 5 year old son was listening in on the conversation and thought it was so hilarious that I told that the doctor that I wanted to be a guinea pig! Hee hee!

What are Friends For?

My awesome friend Julie is a tough Scot. Like many from this fair land, she barks and growls but is also loving and sweet at the same time. For her, if there’s something the matter, you do something about it and if you can’t do anything about it then you go get yourself some whisky and drink yourself silly and then get on with it. She is very practical and at the same time very empathetic. When I tell her that I’m unwell, I can see her eyebrows twitch like she’s feeling my pain and then she always offers some sweet words encouragement. But there’s another side I see when I talk to her about my illness and it’s a mixture of fear, and perplexity.

She is certainly someone who values stoicism with a shot of humor. I love this about Julie for it makes her a pillar of support for many difficult situations. But since my disease is a chronic issue, I am somewhat reluctant to discuss it with Julie. As there is no acute problem, I fear she will see my plaints as whining.

I believe that people without illness fear illness. It’s a lot easier to put on that hospital gown the second time. When I go into a hospital, I am prepared to shut off and give myself over to the medical staff. I’ve accepted myself as a patient and have learned to do this. Many people I know have never had to do this and the thought of being in this position makes them very uncomfortable. I know that Julie is very afraid of sickness and when she tries to sympathize with me a lot of fear comes up.

Another reason for my reluctance to discuss my illness is that she just can’t get it. The fact is unless you have first hand experience with illness, then you just can’t relate to it. Not only do you not relate to it, you don’t want to relate to it. Being sick is not what my friends want to talk about.

I like that my friends see me as a healthy person but it does cause me to hide an important side of myself. An old friend of mine from elementary school started having many health issues in her late teens. She would often go on about her aches and pains and medications and I swore that I never wanted to be like that. But the fact is, sometimes, when you are ill- that’s all that it’s about, you have nothing else to talk about.

So when I am at my worst, I don’t go to Julie or any other friends for support. I really don’t feel they have much to offer since they just don’t know how I feel. If I really did need them to be there for me, I know that they would rise to the occasion, but so far it hasn’t come to that.

I am curious to hear what other people with chronic illness experience with their friends. What is a good friend when it comes to having a chronic illness?

Looking for a Vice

One thing I really hate about having a chronic illness is having to be gentle with my body. I write that with a smile on my face because I am half joking. But there is a part of me that is sick of having to be careful all the time, especially when getting careless is what you're meant to do...

I have this party coming up on the weekend. It's my oldest friend's housewarming/post-divorce party and it should be pretty wild. We keep joking that it's going to be as crazy as in our university days but fortunately and unfortunately for me, I know that for me it won't be. Fortunately, because I don't want to get sloppy and feel like shit the next day. But unfortunately, because I know that my Crohn's will act up if I do. With an aging gut and liver, I just can't do it anymore. I sometimes wonder if it's just that when I was younger I had lower standards. In my twenties it was okay to feel like crap for a while because I had no obligations. Now in my thirties, I have a young child to care for (wish daycare was open on weekends), meals to make, housework to do, I need all the energy I can get. I definitely have higher standards now, I want to have as many good days as I can. Wasting a potentially good day recovering from a hangover just isn't worth it anymore.

But there's still a part of me that misses that feeling of elation that I would get when drinking beyond a reasonable limit, especially when I had a cigarette in the other hand- oh, what a great combination! Though, there's not much literature on the effects of alcohol on Crohn's patients, there's plenty on smoking- and it isn't good. So, my two favourite vices are too unhealthy now, especially if I'm looking for something that will really do my head in.

I've thought about marijuana. I've heard it's actually really great for people with Crohn's as it is an anti-inflammatory. I haven't smoked pot in years because often when I did smoke I didn't like it. My heart would beat way too fast and I didn't like being so out of my head. Perhaps though, I need to find some really mild pot.

Part of me thinks that I should be concentrating on how to include healthier habits in my life but sometimes I feel that's all I do! Now that party season has started I will either have to explore the boundaries of moderation or find a new vice.

Any advice?

Sick and Sexy

One of the inspirations for this blog was a movie I saw recently called, Love and Other Drugs. In this film, Anne Hathaway plays a 26 year-old free-spirited woman who's in the beginning stages of Parkinson's Disease. Jake Gyllenhaal plays a shallow womanizer who lands a position at a pharmaceutical company as a sales rep. The two meet in a local clinic where Jake's character is trying to get a doctor to start selling Zoloft instead of Prozac. The story follows their relationship that starts out as casual and develops into something meaningful.

Now, there were things that I really didn't like about this movie, like the fact that it was at times cheesy, commercial, and it was a nearly formulaic rom-com. I also hated all the product placement and the movie was likely entirely paid for by Pfeizer. But aside from that, it was a beautiful love story with a lot of depth that highlighted some pretty heavy issues surrounding illness and relationships. What I loved most of all was that Anne Hathaway's character, Maggie, was so interesting and likeable. It was so refreshing seeing a character in a movie who was sick and yet funky! The movie wasn't showing a sick person who is dying, or a sick person that you're meant to pity, instead they show a sexy heroine who is dealing with some pretty major health issues.

The movie made me realize that I have a pretty narrow conception of people with illness. I hate the idea of being a sick person as it conjures up some pretty ugly images in my mind. I see someone who is fragile, weak, bony, gray, whining, whimpering, and boring. The character in this movie was none of those things and this was quite eye-opening and empowering for me. Since I've started this blog, I've been looking around to see what else is out there in the blogosphere and I have been so uplifted and enlightened seeing blogs by people who are fresh and fun and sick too! So, slowly, my conception is broadening; I feel I am moving a little closer to a point where I can feel sick and sexy at the same time.

Please share any movies, books, or music that have inspired you recently! I'd love to hear from you!

Stigma or Aura?

My friend Mona has been blessed with a new family member. She and her husband and six-year-old son Andrew recently came home from a compound where they met their response dog, Zoe. At the age of two Andrew began having seizures, often when he is sleeping. Since then, Mona has slept in the same bed as her son so that she can monitor him and be there for him. Zoe has been trained to notice when a person is having a seizure and will go alert a caregiver within seconds. When they go out with Zoe, she is clearly marked as a helper dog. As such, Zoe has the right to go into all public places with Andrew. Mona has been crying tears of joy since Zoe entered their lives. Andrew is finally sleeping in his own room and of course the whole family is starting to feel a little more "normal".

But as much as they are experiencing "normalcy" in their home lives, Mona says she was caught off guard when her son's invisible medical condition became so visible as he walks through town with his dog and she came to realize that this was gift in disguise. Being so visible opened up a window into other people's lives. You see, when people see them they are often curious and ask questions; Upon hearing about what Andrew has been going through, several strangers have started crying in the streets as they open up about their own experiences.

When you have an invisible condition, hiding this side of us makes us feel a stronger - we feel a sense of normalcy since we can avoid the stigma that goes with being a sick person. However, when we don't open up this side of ourselves, we miss out on a wonderful opportunity to connect and share with others.

Confessions of a Supplement Junkie

I spend so much money on supplements. Sometimes I look at the shelf with all my supplements (yes, I have a whole cupboard dedicated to them) and see the price tags and rip them off because I'm so embarassed at how much I've spent on them. Lately, I've started ordering them online (yay! no price tags!) and I wait... when the package finally arrives, I actually get excited!!! Weird, huh?!

Well, I know I'm not alone-I can't be. My mom gives me all her watermarked Psychology Today magazines when she's done bathing with them and I think the majority of the ads in there are for vitamins and supplements. It's a growing market and I guess I'm just following the trend of my demographic.

Here's what I'm now taking:

- l-glutamine

- N-acetyl glucosamine

- slippery elm

- marshmallow root

- oregano oil

- liquorish root

- iron

- Probiotic$

- Vitex

- Omega oil

- Coral calcium

- zinc

- folic acid

- selenium

- CoQ10

- Emergen-C

- colostrum

And, I probably could create a "wish list" of ones that I really want to try.

It's sad, I know.

It's up to you not to heed the call up, I don't want to die, I don't want to die.

-The Clash

Flowers for Algernon

I am feeling so great at the moment. My body feels strong, I have energy, I'm spending less time in the bathroom, I feel so much more in control. When I feel this way, I can't help but think of the story Flowers for Algernon by Daniel Keyes. If you weren't forced to read this book in high school, it's about a man who has a very low IQ who is given an experimental therapy that increases his intelligence. Algernon is the lab mouse that also received the therapy and Charlie notices that after some time Algernon's intelligence is regressing and he knows that the same will soon happen to him. I see my health when I'm on medication as artificial, just like Charlie's intelligence. I am aware that this wonderful feeling is temporary and I am enjoying it as much as I can and making the most of it. I think I need to remember that this is probably true of everyone. Even people without chronic illness go through cycles and it is normal to have highs and lows in terms of energy levels and motivation-right? Or maybe I really need to settle for nothing less? Maybe I should decide that this is how I want to feel and I will take whatever medication I need to keep feeling this way? Maybe I need to stop worrying about side effects and live as best as I can right now? According to Wikipedia, Daniel Keyes got the idea of writing this story from working in a special needs class where a boy asked, "if I work hard and get smart, can I go to the regular class?". I think that my situation is more hopeful, physical health is definitely not fixed. I'm starting to think that it's not "hard work" that's going to improve my health, but rather letting go and letting the drugs do the job for the time being.

I'm taking prednisone and feeling very good these days. As I taper down, I wonder which direction I'm going. I am hoping that it has taken care of the major inflammation and that the stage has been set for healing to happen. However, I know I must brace myself for the fact that as I taper down, my symptoms may begin to worsen. These feelings of hopefulness and bleakness occupy my thoughts so much of the time when I am on my own. I know that I need to stop thinking in terms of miracles and downward spirals and somehow just gauge where I'm at in a non-judgemental way and take medication as needed. I feel more relaxed just writing this.

Just trying to keep up

I came into the world at the wrong time. I was an IUD gone wrong. My mom tells the story of how in the weeks after I was born, as she was struggling to nurse me and care for my one year old brother and three year old sister, my father decided he wanted to have a big party. As he tried to discuss all the arrangements with my mom, she says she remembers listening to him and an overwhelming feeling came over her. According to her, it became apparent at that moment that there was something terribly wrong with their relationship.

My early life was stressful. My parents fought with a bitter intensity. Though there was certainly a lot of love and care given to us in those early years, we were living in a hostile environment. I learned early on that it was important to just keep up. I didn't ask questions, I just followed my older brother and sister and did my best at being happy.

When I went to school, I used the same strategy. I daydreamed and retreated much of the time and then looked at what others were doing. I always did okay. I was smart enough to ask or copy from the right people. I was rarely engaged in what we were doing but if others around me were doing well, then I did too. I had to keep up with others, that was my motivation. I never wanted to outdo my classmates, I just didn't want to be noticed as someone who couldn't keep up.

As an adult, I feel there are Superwomen all around me, and I just can't keep up. I see women who juggle full-time jobs, 3 or more young children families, aging parents, health regimes, and they have bright smiles on their faces and they're eager for new challenges. Fortunately, I realized quite a while ago that I can't keep up with this. My body won't let me. Unfortunately it's always hard to know your own limits. When I take on too much, my body reacts and then grumpiness and sadness set in, and I become so self-absorbed, I just want to hide away because I don't want anyone to know that I can't keep up, I'm falling behind.

what is this shit, anyway?

I have crohn's disease. A few nights ago, I was struck with this incredible drive to start this blog where I would open up about my disease and bring my thoughts and experiences out in the open. I jumped out of bed and chose a name, and a URL. But once I got over this initial excitement, I then started thinking realistically about what I am going to say. What angle do I want to take? Do I want to make it a humorous blog detailing the potentially embarrassing races through town trying to find a bathroom? Do I want to make it a blog about coping with crohn's, with a focus on therapies and treatments? Or did I want it to be a spiritual blog all about my healing journey?

Humour is excellent medicine. I am certainly someone who has a great appreciation for fart humour, but it's not the taboo or disgusting aspect of the disease that I am feeling I need to open up about. When one is first diagnosed with crohn's, it is an incredibly bizarre time as you are forced to recount details of your bowel movements, have objects and appendages stuck up your anus, tubes shoved down your nose, and you are asked for samples of everything! At 15, I think I had to see the humour in this, it was my survival skill. People who are able to joke about this aspect of the disease in creative ways are my heroes, but alas, I don't feel I can make a great contribution here.

During my search through the "crohn's" blogs out there, I saw a few that focus on treatments, and though I see the usefulness of these blogs, I really didn't feel that writing about this would feed my soul in any way.

Then there's the spiritual journey blog, that would feed my soul, right? It just didn't feel right... though I love the idea of seeing my disease as a blessing and a part of me that I need to love, I really don't feel I'm there yet. I went to bed as I was coming down from my creative high (thanks prednisone;) ).

I woke up the next morning, and had an aha moment, I worked it all out in my sleep... I would write about my journey to the journey, I would write about how I feel about being sick. For now. Do I want to spend my whole life writing about being sick? No. Is it really healthy to write about being sick? I have a therapist who tells me I have to stop seeing myself as being sick. As she points out, "look at yourself, look at how healthy you are!". And I do see this but I also see myself as sick. At the moment I feel compelled to explore this aspect of myself for a little while. It's the part of myself that I am always trying to hide away from everyone, it's the part of myself I feel ashamed of.

So, for now I am letting go of some shit. Maybe soon I will have a blog with a prettier name and more positive outlook... I hope so.