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Quality of Life verse Quantity of Life~ Legal verse Illegal.

Pain Medication or Marijuana

I was doing some research this morning on finding an alternative way to manage my pain. After seeing my specialist yesterday at Virginia Mason Hospital where I spent most of my morning… I was told

“I don’t like the amount of pain medication your taking, it’s going to shorten you life! I would like to start tapering you off as soon as we get your Crohn’s under control. It’s going to kill you!”

Wow… it’s been on my mind all night… I’M GOING TO START TAPPERING YOU OFF… AND… IT’S GOING TO KILL YOU is all I heard… everything after that sounded like Charlie Brown’s teacher…Whap, whap, whap…

I reminded him that I’ve been sick for ten years now and taking the “Pain” medication the entire time. Unable to free my body from it, or live a single day without it. A disease induced drug addict. Not an easy thing to admit to anyone or myself. But I can’t live without it. My pain levels range from a 6 to 9 on the pain chart, fluctuating daily depending on what I’ve done, eaten, or what current  stress I’m under. Some days are better than others, but most end up with tears.

Not too many people know I’m on it or take it regularly.  I don’t look any different because of it. I’m just able to function on it, to live my life without sever pain, to have some sort of quality of life. Without it I would be dead, dead from not being able to deal with the pain. I’m sure some of you can relate. I’ve never considered suicide while my pain is under control.

For those of you who know me… I was the most straight laced teenager/young adult. Sure I tried pot, alcohol, and cigarettes in my teens. There I admitted it, I’m sorry mom…. But you’ll be glad to know I hated them all. Yes…really. No matter who did it or where or when I was around it… I gracefully declined… except on a couple occasions, but those are for later stores. I never judged any of my family or friends for dabbling, or even getting hooked. I was so straight laced that I was the one who brought my own soda to the party; afraid that there’s would be spiked. I was teased all the time, but I just didn’t care for it. I didn’t like what alcohol and cigarettes did to me, and I didn’t like how alcohol and cigarettes made me feel and I didn’t like what it did to those around me. On more occasion then I’d care to remember, I didn’t like how it made others act. Pot was another story, it’s not that I didn’t enjoy it, I had the fear factor. I was afraid I’d get caught, have an allergy attack, or that someone would know…because I couldn’t stop smiling.

Growing up in the liquor industry and having it around me all the time, it’s still amazing that alcohol wasn’t one of my vices…for me it was food. My parents owned their own liquor store so I saw what alcohol did to a lot of people, to families, the accidents it caused, and the people it hurt.  I’m not saying that alcohol is completely bad, or the people who consume it are bad. I’m just saying that it’s completely legal, encouraged, advertised, and socially accepted. Even today alcohol is a huge part of a lot of people’s lives, whether they are wine connoisseur or social drinkers or have an occasional glass of wine with dinner. No one judges them. Some use it to control their pain, numb their life woos, or drink it because they like the taste. It’s even socially appropriate to bring a nice bottle of wine to a party or give as a gift to a host. Alcohol is accessible to everyone all the time, no matter where they go it’s available to them. Without judgments!

In my research today I kept finding alternative medications that would help me with my illness and disease. It would help with my pain but it’s not legal, it’s not accessible to me here in the state of Washington… Why you’re asking?  Because it’s illegal to sell it, that’s why.  Marijuana is what kept coming up in my searches. I found so many studies and articles that claim and say that Cannabis would help me with my pain; give me a quality of life. Yet I can’t take it legally…Why I ask?

I remember when my grandma had cancer, several years ago…and the pain she was in, and how a joint maybe could of helped her, but it wasn’t an option, it was illegal, but her cigarettes weren’t. Or when my husband was diagnosed with heart disease and was given only 6 months to live. He had Cardiomyopathy’s.  His resting heart rate was 160. His doctor prescribed all kinds of drugs; most of them had worse side effects then the disease itself.

When we did the research, what kept coming up was Marijuana. It was the only natural pain reliever which would also slow his heart rate down. But it was illegal. He was dying, what were our options… let him die in pain or find him relief.  So we found it on the streets, it would have been so much safer going to our nearest pharmacy. It helped him right away to slow his heart rate down and eased his pain; it made his quality of life improve almost instantly regardless of what others would like to believe.

We couldn’t tell anyone not even his doctor or our family members out of fear of being judged, having the cops show up at our door,  or called a drug addict, pot head or worse yet… a loser. It was the only drug that helped slow down his heart rate and make him comfortable, yet we hid it from our kids so not to promote an illegal substance…because of the stigma attached to it.

The marijuana worked so well combined with other holistic remedies like living an Ayurvedic life style, doing yoga and having Amrit Kalash Nectar in his tea. He was able to completely heal his heart. His doctors were amazed and in disbelief. But we couldn’t tell a soul how he really did it… for fear of being labeled or thrown in jail.

That was 21 years ago and here I sit in the year 2010 faced with the same dilemma. I cannot get the one drug that would help  ease my pain legally, get me off my pain pills, preserve my liver, and enhance my quality of life. I can’t even take it illegally because I am drug tested randomly by my pain doctor, so it’s not even an option for me … so I ask you… Why?

I want to open this for discussion: Quality of life verse Quantity of life~ Legal verse Illegal.

Why is it that I can take tons of medications known to destroy my liver, destroy my mind, memory, and even possibly kill me from their side effects as is noted on just about every medication I’m currently taking? Even the one medication I need the most, Remicade lists it’s possible side effects as Lymphoma…Cancer. Yet I depend on it, willingly take it, and would fight to not lose it… Yet a well know plant that has nowhere near as many harmful side effects… is illegal.

Marijuana could help take away my pain, could help give me more energy, gain weight (not that I need this side effect, I do this all too well on my own). It could help make my quality of life better so maybe I could find some enjoyment, peace and enhance my creative self by making me feel better… but I can’t get it, possess it, grow it, or legally consume without a state issued card prescribed by an M.D. The problem that lies before me and everyone else is we couldn’t buy it here or anywhere even if we had the prescription. The state made it legal to get the card, but not legal to go out and buy it.  The only options for me are the black markets, but I’d have to either get my doctor to prescribe it, or quit going to her, because she’ll fire me if she does a drug test anyway. So either way I’m …screwed.

Marijuana is much cheaper than my $30,000.00 dollar a treatment I’m currently taking. It would save the tax payers millions, make states increase their revenue if they could tax it.  If regulated, there would be no more jailed individuals on pot charges.

I just don’t understand why Marijuana is such a taboo subject in the year 2010. Why when it has been proven to help so many people who are suffering, yet continues to have such a horrible reputation. I don’t understand why so many people fight to keep it from becoming legalized. That is until they to become ill or have an ill family member that would benefit from the use of cannabis.

Is it because there’s no money to be made by it like there is with alcohol or manufactured drugs? Or is it because I or anyone else could grow it in our own back yards? Even though most of us would buy it rather than deal with trying to grow a quality plant.  So in reality,  it could make our country a lot of  money, more then it spends on keeping it illegal, housing our prisoners, or finding and prosecuting growers, dispensers and users.

I found this YouTube video that made sense… I know this is a heated topic, and I apologize if I’ve offended you, but we need to openly discuss the very important issue; my life may depend on it, so may yours.

Hummmm…. Pain, dead liver equals dead body or Marijuana… I know what my choice will be.

Why are we so afraid of it? Tell me what you think!

Crohn’s disease & marijuana.

Can marijuana help people with Crohn’s disease or other gastrointestinal disorders? O’Shaughnessy’s, a scientific journal, published a study in its Autumn 2005 issue titled “Cannabis Alleviates Symptoms of Crohn’s Disease,” by Jeff Hergenrather, MD, The United Kingdom Parliament’s 1998 “Science and Technology-Ninth Report” noted: “Dr. Anita Holdcroft of Hammersmith Hospital…has reported the results of a placebo-controlled trial of cannabis in a patient with severe chronic pain of gastrointestinal origin… The patient’s demand for morphine was substantially lower during treatment with cannabis than during a period of placebo treatment.” The Journal of Clinical Investigation published an article in Apr. 2004 by F. Massa, et al., from the Max Planck Institute of Psychiatry in Munich, titled “The Endogenous Cannabinoid System Protects Against Colonic Inflammation,” that stated: “The major active constitutent of the plant Cannabis sativa (marijuana), THC, and a variety of natural and synthetic cannabinoids have been shown to possess… anti-inflammatory activities… Results indicate that the endogenous cannabinoid system represents a promising therapeutic target for the treatment of intestinal disease conditions characterized by excessive inflammatory responses.”

 

“Can’t Wait Card”

Today, one of my new friends who also experiences IBS told me about a card that I could get from the CCFA (Crohn’s & Colitis Foundation of America) called the “Can’t Wait Card”. It’s a card that you can carry with you and if you find yourself in a situation where there is not a public restroom, you can use this card to gain access to any available bathroom, such as a staff toilet in a store, or an employee only restroom.

I had no idea one of these card even existed. So when my friend mentioned it to me, I was quickly on it. I can’t even tell you how many times I’ve been told… “I’m sorry miss, we don’t a public restroom.” Normally they can tell by the look on my face that I’m desperate. Some businesses have allowed me to use their facilities, but many haven’t. They’ve lost my future business.

I emailed CCFA this morning, they were quick to respond. I was very impressed; normally you’d have to wait forever to get a response. I wanted to share what they had to say…

“The… “Can’t Wait Card” which will gain you access to any public restroom is part of our membership program. Individual membership is a $30 annual fee which includes the card, a subscription to our bi-annual magazine Take Charge, a subscription to our bi-annual research news bulletin Under the Microscope, chapter newsletters, and discounts to CCFA events. If this poses a financial hardship, we can offer you a 1 year complimentary membership.”
You may be interested to know that CCFA has an exciting new education event. Our new patient education program is Understanding IBD: What Every Patient Needs to Know. This free event, open to all patients, family members, caregivers, and community members is hosted by the Crohn’s & Colitis Foundation and will be led by local physician experts.
Our experts in patient care and research will provide an in-depth overview of IBD, including:
• Guidance on how to recognize symptoms
• How to manage your disease
• Current therapies and emerging research
• Disease and treatment-related side effects
• Emotional wellness and resources
• Question-and-answer session
For more information on a local program in your area, please visit our website http://www.ccfa.org/info/understanding
To become a CCFA member, call 800.932.2423.

I had no clue there was such a care and I’ve done extensive research, so I wanted to share it with all of you so you to are now aware and can get your own card.

Due to my financial situation and my inability to work at this time, I’m not able to afford to send them their $30.00 membership fees until my disability is reinstated or my social security is approved… so I had to let them know that this posed a hardship…not an easy thing to admit to anyone. I have such a hard time asking for help (something I need to work on). I hate not having the money I use to have, or not being able to afford basic necessities or things that would help me deal with my illness a little easier…. But I’m learning to do what I can with the means that I have…

So if I don’t get approved for the hardship “Charity Care” membership, I’ve decided that I would have to continue doing what I have been doing… Closely monitoring where I go, map out my route… not eat until I get home, bulk up on the Imodium, etc… Either that… or come up with my own card with a sweet description as shown below:
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
“If you were presented this card….
The person standing before you is about to explode…
And I do mean EXPLODE…KABOOM!
You have two choices… run for cover,
Or escort them to your nearest restroom…
QUICKLY!
Thank you for your assistance in keeping our world a happier clean place.”
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Without humor… what do we have left…? I’ll let you know if I get one of those special cards…or if I’ve made my own…LOL. Until the next time….

~Peace, Love & Happy Moments ~

The Crohn’sAdvocate(TM) Online Forum is still open for Registration for Tonights Forum

I just received an email from Crohn’s Advocate offering an online forum, check it out, pass it on to others who could benefit. I’ve enjoyed getting my Crohn’s Advocate free magazine, it’s filled with information that has helped me over the years. They offer patient resources, information about health care professionals, important safety information, information about CIMZIA and it’s side effects, support and encouragement. It provides a safe place to ask the hard questions.

Tonight’s Event Details includes:
Crohn’sAdvocate Share Your Story

Hear patients share their experiences, and chat online with featured experts.

Everyone is invited to take part in a series of live forums for the Crohn’s community. Our first forum takes place Thursday October 7, 2010 at 7:00PM (Eastern) and 9:00PM (Eastern). During these live webcasts, you’ll hear from Crohn’s patients and have the chance to chat with our featured speakers and patients.

Thursday, October 7, 2010
7:00PM (Eastern) and 9:00PM (Eastern).

Speakers Include:

* Tamara Duker Freuman, M.S., R.D., C.D.N. – A registered dietician who will address the unique dietary concerns of Crohn’s patients and offer helpful advice for finding balance in your diet
* Brett Cavalli – A featured Crohn’s patient who will share his inspirational story of learning to live with the disease

This is an interactive forum featuring a dietitian and foodie with Crohn’s. Don’t miss this incredible FREE opportunity to learn more about the connection between nutrition and Crohn’s. You’ll be able to ask questions live and anonymously—from the comfort of your own home!

If you miss tonight’s event there’s another forum coming up on November 16th. Featured Topic: A clinical psychology post-doctoral fellow and Crohn’s patient discusses overcoming the emotional challenges of living with Crohn’s disease.

Advocacy for Patients with Chronic Illness, Inc.

I was diagnosed with Crohn’s disease in 2001 at the age of 38. After a constant battle, several surgeries, 18 blood transfusions, and more medications than I can remember. I’ve experienced events that will haunt me forever. My disease has taken my life hostage, twisted it, making each day a constant battle just to survive; every day is a new challenge. I’ve lost everything from my job, my home, my medical insurance, life as I knew it and everything that meant anything. Suffering from severe complications and side effects while fighting for my rights to Social Security Insurance and Disability Insurance… this is what my life has become. Finding help and answers has been very difficult. Your help in Supporting Advocacy for Patients with Chronic Illness, Inc. would help me and others like me suffering from these same experiences. Thank you for your, Love Hugs and Prayers to all of you♥

Bulletin from the cause: Advocacy for Patients with Chronic Illness, Inc.

Go to Cause

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To: Members in Advocacy for Patients with Chronic Illness, Inc.

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The cause now has 1,345 members and has raised $3,556.
Their mission: Provide free legal services to patients with chronic illnesses

What The Bleep Is Crohn’s Disease?

What The Bleep Is Crohn’s Disease?

The CCFA describes it as: A chronic (ongoing) disorder that causes inflammation of the digestive or gastrointestinal (GI) tract. Although it can involve any area of the GI tract from the mouth to the anus, it most commonly affects the small intestine and/or colon.

Named after Dr. Burrill B. Crohn. In 1932, Dr. Crohn and two colleagues, Dr. Leon Ginzburg and Dr. Gordon D. Oppenheimer, published a paper describing what is known today as Crohn’s disease. Crohn’s is related to ulcerative colitis which is also called inflammatory bowel disease (IBD).

You can find all the information you ever or never wanted to know about this disease that effects more people today than ever before at:  www.ccfa.org/info/about/crohns

But what you can’t find there is how it really affects your life when you’ve been graced by the hand of God to experience the humiliating, belittling, and degenerative disease that I along with many others have (over a million Americans to be exact).

Sure I can find all the technical and clinical explanations to make my face turn purple… but what I can’t seem to find is a support system that is truthful, and brutally honest, who truly understands what it’s like to live each and every day with a disease that is so temperamental, and constantly changing its rules…“I just wish there was someone, somewhere who could give me truthful and honest answer’s…”

OMG…. You’re thinking… I know her… is it contagious…  You’ll be happy to know it’s NOT…!

Is it something I would wish on my worst enemies (not that I have any)…  “No!  I wouldn’t even wish it on them.

Am I bitter for having the disease… some days! But mostly I try to stay positive, and know that someday there will be a cure, or relief, or that it will go into remission, or just plain disappear.

Do I blame God or my Mother or the generations before me in my family tree…?   The answer is “No!”   Even though they say it is hereditary.  Yet no one will admit to having it… it’s not one of those diseases that you go out and brag about or even admit to your best friend.  I know I’ve tried to hide it ever since becoming ill in 2000. I never really had any symptoms except maybe once when I was 13 and was hospitalized for a week for what they ended up calling nerves or attention getting… meaning they had no clue why I was doubling over in excruciating pain.

Is it easy to talk or write about…? That’s a joke!  Who wants to hear about how I barely made it to the toilet, or how I can’t go anywhere until I know I’ve cleaned my system out. Or how I can’t eat anything in the morning or until I know exactly where the next restroom will be, which is why my doctor said I eat like a sumo wrestler… consuming the bulk of their calories at night so they can pack on the pounds….and I wonder why I’m so fat.

Or who wants to hear why I can’t go to my friend’s wedding or birthday party or events because I don’t know where the next restroom will be or if I’ll be able to make it through the ceremony without having to run.  Do you think they want to hear how I can’t be in their wedding or plan their wedding shower for fear that I never know when I’ll have my next attack… can you imagine standing up at the altar for an hour long wedding ceremony and having an overwhelming feeling that you’re going to explode right there…right then, as the sweat beads up on my forehead, my body tightens,  doing whatever I can to not have an embarrassing moment…  So naturally I gracefully decline…even though I know it breaks their heart… how could I be so cold… what kind of friend am I anyway?  If they only knew how bad it makes me feel… how truly embarrassed I am, how sick it makes me that I can’t be normal like them.

Another issue I have is finding a clean bathroom. When I lived in Anchorage I had the state, yes… the state mapped out… I knew exactly where every bathroom was, how long it took me to get there, how close it was to the front door from the parking lot, and if it was clean… Not all bathrooms are equal… Note to anyone traveling to Alaska…. Stay away from the Mapco on Northern Lights and the Seward highway… my least favorite can of them all….

I use to joke that I could write a book purely on bathrooms, restroom, can’s, shitter’s, loo’s, Nettie’s, Privy or washrooms… Whatever name you want to call it…  Bathrooms are actually quite interesting… having spent the past 10 years in them more frequently then I’d like to admit. Can you imagine having to utilize a toilet like in parts of Europe or Asia… having to squat while having an explosive episode… not only would I be wearing it… so would the person next to me…. I don’t think I’ll be going there anytime soon; not to mention the 12 to 18 hour plane ride over there… I’m lucky I made it the 6 hours from Hawaii to the mainland.  And that’s only after I’ve taken eight to ten Imodium’s first, my new wonder drug.   I knew I should have bought stock in it’s maker… I guess it’s not to late… with one million Americans suffering from uncontrolled bouts of diarrhea…. McNeil might be a good one to invest in.

Why is Crohns so bad your thinking…? Hell with Imodium to control it…  I should be able to do just about anything?  Wrong! Taking too much or not enough Imodium is a fine line… Not enough…there are still accidents…  Too much… well you get the idea… either way I’m still miserable!  Not only do people with Crohn’s have to deal with the constant bouts of diarrhea… there I said it! They also have to worry about getting infections. Crohns disease has an abnormal response by the body’s immune system. The immune system is composed of various cells and proteins. Normally, these protect the body from infection. In people with Crohn’s disease, the immune system reacts inappropriately.  Therefore people like me get a lot sicker than your average Joe or Michele.  Am I losing you yet?

Researchers believe that the immune system mistakes microbes, such as bacteria that is normally found in the intestines, for foreign or invading substances (i.e.: food!), and launches an attack. In the process, the body sends white blood cells into the lining of the intestines, where they produce chronic inflammation. These cells then generate harmful products that ultimately lead to ulcerations and bowel injury (holes in the stomach lining also called fistulas). When this happens, the patient experiences the symptoms of IBD, in other words excruciating pain, embarrassing gas, bloating, and quick trips to the nearest restroom.

Although Crohn’s disease most commonly affects the end of the small intestine (the ileum) and the beginning of the large intestine (the colon), it may also involve any part of the GI tract, and I do mean any part being the key words here!  If any of you have ever had let’s say a canker sore in your mouth or let’s say a sore throat… you all know how bad that feels, how much pain you’re in, and what little can be done to ease the pain… Well, what if your sore throat or canker sore was not just localized, but went throughout your whole system… Yes, you’re getting the picture… from your mouth all the way down to your anus (asshole.) Kind of gives pain a new meaning doesn’t it?

The only way I know how to accurately describe how I feel 90% of the time is like… having battery acid poured down my throat… feeling it move though my intestinal track… settling in areas like my stomach, and ileum… I never even knew where my ileum was until they told me they were going to have to take it out, but that’s a whole other story…  To continue on… the acid moves through my colon…where I get so bloated from all the narrowing area of built up scar tissue…as it  passes through my colon, coming out my ass burning holes its entire way though.

I know some people who come out of a restroom…feel actually rested, relieved, and refreshed… which is where the term restroom originated from. But not I or anyone else with Crohn’s… Not only do I fear having to go in… but I never know how I’m going to feel coming out… Whether it’s going to be one of those times I’m praying to God to just take me home, or I’m sitting quietly hoping no one is paying attention to how long I’ve been sitting there, some times I’m in there for up to an hour trying to go, or cleaning myself up. God forbid I have to go to a public restroom,  screaming in pain tends to make people uncomfortable or scarred or on occasion laugh.  Knowing in advance that I’m most likely going to be making unpleasing noises, even though I know the person sitting next to me can’t see me, I’m still turning red out of embarrassment.  Either way which ever bathroom I find myself in I’m usually drenched from sweat… crying, and unable to walk until the cocaine cream sets in and numbs my bottom side.  … sometimes I apologize as I’m running in, trying to get my pants down and my underwear off and out of the minefield range before the explosion take place… I can’t even tell you how many of my underwear have ended up in the depths of the garbage can buried deep. The worst part is when you hear the giggles next door or others fleeing as they’re laughing on their way out, normally the young girls or groups of ladies… Hopefully they will never experience the the humiliation I do on a daily basis. What’s worse is when you know the people, or when their your co-workers, or people you see on a daily basis. When they see you coming they run or avoid you at all costs.

I can never quite understand why when taking a shit which everyone has to do daily is such a funny and laughable moment.  But I’m sure you feel like I feel… embarrassed if we fart out loud, let one slip, or have one of those inner toilet explosions which somehow seem amplified.  I’ve gotten pretty good at going in-between flushes… to lighten the sound effects.  I don’t dare let one rip without being close to a restroom… I never know what’s coming out whether It’s a little gas, or a dark chocolate surprise… I’m the only adult I know who carries wet wipes with her at all times… and it’s been years since I’ve had a baby around.

I can’t tell you how many times I’ve heard someone on the other side of the stall wall having a similar situation… I want to tell them it’s OK, I understand… go ahead let it rip! Yet I say nothing… I definitely don’t laugh, giggle, or run out plugging my nose.  And it’s not even the little girls doing the giggling… it’s mostly the young women who are there with their girlfriends… You know the ones that think their shit don’t stink… or they would never do something like that… Wait until Crohn’s sets into their body… only then will they know how we feel.

So there you have it… my definition of Crohn’s… I’m hoping that I can help lighten the mood, help others to understand how we feel, and what living with Crohn’s is like. I hope this will be a safe place to share your stories, ask questions, and be a sounding board for others who are experiencing the same un-chosen lifestyle of living with Crohn’s disease.  We are not some leper who needs to be shunned… We are just like the rest of you, we all have to shit… some just more than others. So the next time you hear someone next to you having a rough time…maybe you could offer a little compassion, a smile, or think about the time you had diarrhea…or when it will happen next, believe me… you too will have it sometime or another, it’s just a matter of when.

Here’s a little poem I wrote while sitting in my office… that’s what I call my bathroom, it’s better then calling it the shitter,can or restroom … besides I’ve had more creative ideas while spending hours upon hours on the worlds most uncomfortable hard seat… maybe some of you can relate…

Make Way

Running,

Holding my breath,

Try to think of something else.

Get out of my way!

Please God, make them move.

I can’t hold it.

Just a few more feet,

You can do it.

Your there, your safe,

Empty.

No embarrassing moments today.

Breathe!

Next Entry I’ll talk about medications…and how I cope…or hope! Please if you have any stories, insights, or helpful tips, medications successes or failures, or information about Crohn’s to share… please do so…

Your thoughts, ideas and comments are always welcome without judgment! If you don’t have anything nice to say or share… then take my grandma’s advise… Don’t.

Peace, Love and light,

Michele

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