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.