Real Life Chronically Sick: Crohn's Disease, Fibromyalgia, Depression, Anxiety, Insomnia, Nausea. It is in no way a substitute for actual medical advice from your specific doctor. I cannot and do not condone or condemn any course of treatment that may or may not work for you. This is my personal story about my specific illnesses.
Remember a million years ago when I won the WEGO Health TMI Award? Well, I am super happy to announce that I was nominated for two different awards this year - Hilarious Patient Leader and Best In Show: Blog. Learn more about the WEGO Health Awards HERE.
The whole month of July is when you get to endorse the nominees. Click THIS LINK to endorse your favorite! There are so many great Health Activists to choose from this year, but I really wouldn't hate it if you endorsed me.
Finally, after six months of having my medical marijuana card, my local area opened it's first medical marijuana dispensary. There are other dispensaries open in Ohio, however I really can't see driving two or more hours to get to one so I waited, very impatiently, for one to open closer to me. Earlier this week my cousin, Jennie (her blog can be found HERE) and I visited the brand new local dispensary and I have to say, I was really impressed. Here's what happened...
When we arrived at the parking lot we were surprised to see how un-busy the place seemed to be. There was ample parking and not a line of people out the door and around the building. This might have had something to do with the fact that the dispensary wasn't technically open yet. They had wht they referred to as a "soft opening" but they have yet to have their big grand opening. So probably not that many people even know they are open. Thanks to Jennie's vigilant research and monitoring of when new dispensaries are opening, we knew.
When we walked in we were greeted by a couple of the employees.
Just kidding! This is NOT what we found. We actually found very professional individuals who were quite respectful and helpful. The first thing they wanted to know was if we had our medical marijuana cards. I have mine, however Jennie does not have her card just yet. She was approved but hadn't actually gotten the card. For this reason, she had to take a seat and wait. I was asked for further information. In addition to my MMC, I needed to show them my ID and provide them with the name of my referring doctor. Of course I didn't remember the name of the doctor but they were very patient with me while I looked up the information on my phone. After they checked my ID and saw that everything was legit, I was given a form to fill out and asked to wait until someone came out to get me.
As we waited in the waiting area I couldn't help but notice how clean the place was. It was very well lit, windows all across the front, the walls and even the ceiling were stylishly decorated but not with marijuana paraphernalia or pictures. It was just like any other modern doctor's office or business office that that you would go to. There was no smell or dank smoke hanging in the air. I was really surprised actually. You would never know you were sitting in a marijuana dispensary just by the waiting room.
I filled out the form which asked me about my specific diagnosis (es) and what exactly I needed treatment for. It was just like filling out an intake form for any other doctor's office. There were two other people waiting along with me. They looked like this:
I'm totally kidding. They were normal people. Some older guy in a nice button down shirt and pants and the other guy was just some normal looking dude. Not strung out. Not shady. Just normal people needing medicine, waiting like at any other pharmacy. I have actually seen shadier people at my therapists office - or Walmart for that matter!
Anyway, the actual area where you purchased the marijuana was behind a door that was locked and could only be opened by one of the employees. I believe it was a fingerprint scanner as opposed to just a card swipe or regular lock situation. There was also no armed guard or police officer which I half expected to be there. As we waited we saw the employees come in and out escorting people back and forth, however it wasn't really that busy. Maybe two or three patients were in the place behind the door while the three of us waited in the waiting area. Not terrible.
What was behind the door when it opened was something I will never forget. Each time the door was opened you could hear a choir of angels singing and billowy clouds of smoke rolled out into the waiting area. I'm fairly certain I caught a glimpse of Snoop Dogg riding a unicorn. It was majestic. The door clearly held back the gates to Heaven.
Okay, so none of that actually happened, however I think it should have because it only seemed appropriate. Honestly, I really didn't know what to expect when I was granted access to the actual dispensary, but I kind of thought it was going to be a little more seedy than what it was. They called my name and I was greeted by a young woman who opened the door and allowed me to enter before her. The first thing I noticed was the fact that I was not knocked over by the smell of weed. I could smell it faintly but it wasn't overpowering like I expected. The second thing I noticed was that it was really clean and the actual marijuana was not super visible. I have seen dispensaries on television where there are just jars and jars of different kinds of weed just everywhere. This place was nothing like that.
The very nice lady asked me if I wanted a consultation so I said sure. She took me into one of the small rooms that were off to the side. There was a round table with some chairs and minimal decorations. It was a peaceful little room. Nothing overwhelming. No big pro medical marijuana posters on the wall or anything like that. We sat down and she looked over the form that I had filled out in the waiting room. She asked if the doctor had made particular recommendations to me and I said yes so we talked about that for a little while. Then she made some suggestions of her own and proceeded to tell me pretty much the exact information I would look up on Leafly if I were to research strains of medical marijuana myself. She was incredibly knowledgeable. I liked that.
After the consultation she took me back out to the main area where there was a large wooden cabinet with a glass top and locked drawers that slid out. She opened one of the drawers and inside were three locked plastic containers. Each container housed a large bud of a specific strain of medical marijuana. She allowed me to hold the container though it was locked so you couldn't actually open it to get to what was inside. There was however, an area with little holes on the top where you could smell the marijuana inside. Now I am not really one to exam my weed before I use it. I don't really understand, nor do I necessarily care about all the dynamics of what different strains of marijuana are supposed to look or smell like. I know enough to see crystals on it or smell the slightly varied scents, but I wouldn't really know one kind from another just by looking at it or smelling it. Especially when you are dealing with the higher quality like what they had. It was definitely not a bunch of stems and seeds. That's about the only thing I know to look for.
Seeds and stems = BAD
Frosty crystals and color = GOOD
She showed me about six different kinds and allowed me to look at and smell each one. Other than noting that they were a very high quality I really couldn't tell you much more than that. Honestly, they just smelled like weed. Maybe I'm just untrained. Anyway, the lady helping me was very informed and continued to explain to me the different levels of THC and CBD in each one. We also discussed pricing. This is where it gets a little confusing for me. The price of 1/8 of an ounce of marijuana on the street in Ohio sells for roughly $40 give or take. The dispensaries in Ohio sell their marijuana as 1/10 of an ounce for some reason and the cost is roughly $50 give or take. Now this 1/10 of an ounce is considered to be one daily dose of medical marijuana. If you were to actually purchase enough to use 1/10 of an ounce every day for one month you're looking at $1,500. I think that is totally ridiculous. I'm not even sure how you could use 1/10 of an ounce of marijuana in one day anyway, but that's neither here nor there.
Just kidding! There is no way I could do that.
Anyway... she also showed me some of the edible things they have. One of which was eleven gummies for $80 - yes, just the eleven. I asked her how you were supposed to take them and she said that you start with a half of one gummy and then wait about an hour to see if it helps and then go from there. I found that to be quite expensive. She also told me they had various oils and tinctures, however at this time they are unflavored and taste quite horrible. After considering all the information I was presented with, I opted to purchase 1/10 of an ounce of dry herb that I can legally use by vaping. FYI: It is unlawful to smoke the plant in Ohio even if it is for medical use.
Once I placed my order I had to go to the bathroom - of course. It was nice and clean and private and all of that so that was also a plus. Once I was finished I went up to the counter and paid for my purchase. I was handed a cute little brown paper bag and was walked to the door to meet my cousin in the waiting room. The whole thing, barring my bathroom break, took about twenty minutes.
Once we got to the car we checked out the purchase. Here is actual footage.
Okay, again, I'm only joking with these memes. Actually, the marijuana comes in a sealed plastic bottle with labels of what exactly is inside, warnings, and various other information. Much like you would get at a pharmacy. What I did find interesting was that even though there were two fairly decent size buds of marijuana in the bottle, there was not a large stem running through them. It seems as if they were kind enough to remove any stems that would account for unnecessary weight. So if you were to get 1/8 of an ounce on the street from the friendly neighborhood dealer, chances are you would get some stems in there that would account for some weight. Maybe not much, but a little bit adds up. I was pleased to see that I got exactly what I paid for - dry plant and nothing more. And I also was pleased because I don't have to worry about what I purchased being laced with something else or made with shady processing practices. That peace of mind goes a long way when you are specifically using marijuana for pain, nausea, appetite stimulation, insomnia, anxiety, and depression like I am. I'm honestly not looking to get high, I'm looking for relief.
So there you have it folks. My trip to the medical marijuana dispensary. It was really a decent experience. I'm curious to see how things may change once they have their actual grand opening. Stay tuned because you know I'll keep posting.
Nearly 25 years ago when I was just 18 years old, I woke up from an exploratory abdominal surgery and overheard nurses talking about some girl who had Crohn's Disease. These nurses discussed how terrible it was to have a lifelong illness with no cure. How the girl was so young and had her whole life ahead of her, that a long battle between her and her body had already begun, and that battle would now last a lifetime. I had heard of Crohn's Disease, but nothing more than knowing someone who knew someone who had it and you had to take steroids for it and maybe end up with a colostomy bag because of it. Honestly, to me, taking steroids meant you bulked up with muscles and flew into 'roid rages like the boys on our high school football team did when they all got into taking steroids. I was totally unware of the difference between that type of steroid and the type you take for actual medical purposes. The only thing about colostomy bags that knew was my grandmother had one and no one ever talked about it. Regardless, I felt bad for that girl.
As it turned out, those nurses were talking about me. For the first few hours, if not days, I was in total denial about having Crohn's. I didn't want to talk about it and I refused to listen when the nurses and doctor tried to explain to me about what I was going to have to do to take care of myself, and I was more pissed off than I had ever remembered being. I didn't want to be sick for the rest of my life. I didn't want to have to take tons of medications with terrible side effects. I certainly didn't want to have a disease, much less one that revolved around a bathroom and poop. And I didn't want to be in pain anymore.
At that time there was virtually no information out there about Crohn's Disease and very little means to find it. There was no social media, the internet was very, very new, and the most widely used and basically the only medication to treat it was good old Prednisone - the steroids I would come to have a very long and volatile relationship with. I felt very alone.
About a year or so after my diagnosis, my Mom was able to locate a support group that met at a local hospital once a month. It was full of people who struggled with Crohn's Disease and Ulcerative Colitis. I was the youngest one there. I didn't really like going because everyone had story after story of the things they had been through because of Inflammatory Bowel Disease. I remember the man who had at least 20 different surgeries, the super thin and frail people who looked so malnourished because they couldn't eat anything, the ones that were bloated and swollen because of the steroids, and the woman who was pregnant with twins and was eventually hospitalized for the last half of her pregnancy because it was so high risk - not because of the twins, but because she had Crohn's. It scared me to think that this was going to be my life. I wondered if I was going to ever be able to find love, get married, have my own children, hold a job and live any kind of normal life. It terrified me to think of how many surgeries and medications were in my future and I often wondered how I was going to endure all the pain - so much pain.
The ups and downs that have come from almost 25 years of living with Crohn's Disease have not been easy. So much has happened along the way - good and bad. But the most important thing that has happened is I was able to start this blog and reach so many others who live with IBD. I've made friends across the globe and heard countless others share their personal IBD stories. My heart goes out to every single one of them. I'm so grateful because having Crohn's Disease has allowed me the opportunity to meet people that I otherwise would never have been able to meet. We've formed lasting bonds that make us stronger and I know I will never feel as alone as I felt when I was first diagnosed.
Today is World IBD Day. As I reflect, I hope I have been able to bring a little bit of awareness to you about what it's like to live with Crohn's Disease and all the other nonsense that goes along with it. I hope that I have been able to provide you with one part knowledge and two parts laughter. To all my fellow IBD'ers, I hope you know how much I love you and that I will always be here fighting right beside you. You are never alone. Thank you all for reading and joining me in my "shitty" journey.
Earlier this month I had another article published by The Mighty. I didn't publicize it on my Facebook because I felt the content might upset those close to me who may not know, or may not want to relive the topic I discussed. However, after the article was reposted on three separate The Mighty Facebook profiles, it received nearly 700 "likes" and over 400 "shares". Needless to say, I was really shocked at the response the article received. The numerous comments have completely surprised me also. I was unaware so many people felt exactly how I felt. I'm glad so many people were able to relate to this article, but I'm also so sorry that so many people relate to this article. You can find it HERE. Thank you, The Mighty, for publishing me yet again!
I'm not a super social person. I don't like crowds, I have difficulty being around new people and making small talk destroys a little part of my soul every time it's necessary. I can usually get through it though, right up until someone asks me one specific questions - where do you work? Well, shit.
I could say something about being a writer, a blogger, or a chronic illness advocate, but that still warrants more conversation and explanation, of which I don't want to give. And in the back of my mind, I know I'm not receiving lucrative pay for my efforts as a writer, a blogger or a chronic illness activist so I don't think of it as a "real" job. Besides, I love doing it so it's not like real work. I used to be able to say "I'm an administrator for the AFLAC Regional Office" or "I'm a hospice nurse". I wasn't usually met with follow up questions after that. I can't say that now though because the truth is, I don't work anymore because I'm on disability. That just invites more questions and let's be honest here...
It should be easy to say, "I'm on disability because of Crohn's disease." That should be enough and technically it's simple enough to say. Except it brings about more questions I don't want to deal with. Being asked what I do for work makes me feel embarrassed that I don't have a more impressive response. So I answer with the only thing I can thing of, "I'm not working right now." I sometimes still get the looks and the questions, but it's easier to change the subject and side step at that point.
If I do say something about being on disability, I don't like the look I get that forces me to try and explain exactly why. You know, the two part look - one part pity and one part disbelief both begging for more information because I don't look sick. I don't look like a disabled person. I don't look "unwell". Well, at least when I'm in a situation where someone asks me what I do for a living I don't look unwell. Those people will never see me when I've had to run to the bathroom with screaming diarrhea for the 24th time that day. They won't see me doubled over with severe pain in my gut. They won't see me sick. They get to see me on the rare occasion that I feel well enough to socially interact. I don't want to bring up how bad it gets in small talk conversation because frankly, I don't want to have to justify to anyone why I'm on disability. It was an incredibly painful process that nearly destroyed me and even though I am grateful for the menial income I do get from my disability, I will always regret having to go through the process. Just admitting I'm on disability brings up all those terrible feelings and the only thing I walk away with is feeling ashamed. Ashamed I'm not well enough to work and not sick enough to look the part of what people think of when they hear the word 'disabled'.
I can't avoid the question I guess. I realize it's just normal conversation and people are just trying to get to know me. It's just what you do when you socially interact with people. **SIGH** But it's painful and difficult and it's a question I would just rather avoid. It opens up a can of worms that would take forever to get through and I just don't seem to have the energy to do it. I hate having to explain how Crohn's disease (and all the rest of the inflictions I suffer) affect me to random people I may never see again. There has to be better questions to ask - or at least a more creative response. How about these five classy responses:
1. I secretly won the lottery so I don't have to work ever again - but don't tell anyone. 2. I run an illegal underground child adoption ring - have you met my daughter? 3. Are you writing a book? Because I am, what do you do? 4. I manually masturbate caged animals for artificial insemination purposes. 5. I harvest human organs and sell them on the dark net.
Maybe I should just rethink explaining the writer/blogger/advocate thing. :)
In light of the two recent posts I made about my anxieties and fears about traveling, I would like to share with you what actually happened when I went on the trip. I shared a sample of how my mind raced and thoughts ran wild with off the wall scenarios of human trafficking and though it was kind of funny, I was really concerned. I was also concerned about being in a situation where I couldn't get to a bathroom if I needed one. I didn't want to poop my pants or end up in a situation where I made a scene on an airplane. I was worried about traveling with other people and being in a hotel room or other situation where I would have to get to a bathroom and maybe not make it and all the embarrassing things that happen while I'm in there. Honestly, I think I worried way too much. Big surprise, I know.
Somehow I was able to negotiate my way through three separate airports, three airplane rides, four very long taxi rides, one short bus ride, one overnight hotel stay, three meals with people I just met, one meet and greet social situation and a six hour meeting all with absolutely no restroom issues. Not that I didn't have to go, because I did, but when I did the bathroom was readily available and I had no issues at all with accidents or embarrassment. I'm also very pleased to announce I didn't fall victim to a human trafficking ring either.
I have never felt more proud of myself. I'm not sure how I managed this but it was actually very empowering. It wasn't until I was safely back home that my intestine and body decided to rebel. My stomach has decided to prove to me just how unpredictable it can be and my body still aches from lugging my bag through the airports. My brain and body are so fatigued I can barely form thoughts to write this post, but I'm okay with that. I can take the time I need to recoup and I will. I accomplished something huge and proved to myself that even thought I have all these terrible anxieties about so many things, it is still possible for me to accomplish great things. The meeting was a success and I now have new friends from all over the world. More on that later. Now, I need a nap.
As a rule I don't travel much. I can't even go to the grocery without having to sprint through the store like Usain Bolt to get to the bathroom. I did develop the ERPK (Emergency Roadside Potty Kit - See below on the right for more information) for traveling emergencies, but having that isn't always practical to use and doesn't always ease the anxiety that is associated with traveling. Especially when you are with other people.
Recently, I have been selected to participate in something that has given me the opportunity to travel and this means not only getting to a specific destination, but also staying in a hotel room - possibly with other people. Being in close quarters with people you barely know while you suffer from chronic diarrhea is a nerve-racking experience, even if those people understand. My anxiety constantly makes my brain obsess about things like noises and smells. I wonder: does the bathroom fan work, will the toilet flush, how private will the bathroom be really? Then there is the walk of shame coming out of the bathroom once I've finished doing my business. Will the other people say something, will they be cool about it, should I make a joke to deal with it or just act like nothing happened? All these things swirl around my head when I just think about traveling with other people. Even on family trips I always had a lot of anxiety about being in a hotel room because of these very things - and that was with my own family.
I have been asked how pooping still bothers me so much after having Crohn's for this long and I honestly don't know. I guess maybe it shouldn't. I have said a million times - everybody poops. No one's poop smells like roses and no one can have diarrhea without make terrible noises and smell. However knowing this doesn't make me feel less embarrassed. Most often when I'm in a public restroom I have to remind myself that I'm never going to see those other people again so it doesn't matter what I do in there. Who cares if it smells. But that doesn't always work. I don't have a choice about going to the bathroom. When and where it happens is all up to the Bowel Gods and I have zero control. But using a public restroom and using a hotel room bathroom are two very different scenarios.
I think the majority of my embarrassment is my issue though and not other people's. I wish there were some way to make it not so. I wish I could realize that it really doesn't matter and anyone who makes it an issue or has something negative to say, more than just a joke to lighten the mood, is not worth even worrying about. But when it comes down to sitting on the toilet and knowing what's going to happen when there are other people just mere feet from me separated by barely a wall and a thin door, I cannot help but feel embarrassed and somewhat humiliated that I just can't hold it or wait until another opportunity. It doesn't bother me when other people poop. It doesn't bother me if I had to stand in the same room with them while they poop, let alone be on the other side of that thin door. I don't care at all when I'm not the one on the toilet. So why do I think other people care so much? It's just poop, right? And EVERYBODY POOPS!
The Mighty is a website that publishes articles about all kinds of illnesses. I have wanted to have something published on their site for years but never had the guts (no pun intended) to send something in. Well, I did and within one week they had published my article. I'm beyond excited. Big shout out to my cousin, Kimmy, because she was the reason for this article. Thank you to The Mighty for publishing me. You made my year! Check out the article H E R E.
I've read a lot of articles about what it's like to have anxiety and a lot of them are very accurate. Describing the way anxiety takes over your thoughts, almost removing your basic human ability to reason and think of nothing other than worst case scenarios, can be difficult to describe as well as understand. I am going to share with you how my mind thinks when anxiety takes over and how my train of thought goes off into directions that are not only totally unfounded and completely ridiculous, but also completely logical at the same time.
This is the point where they say ***Trigger Warning*** sooo, there's that.
I was invited to go to a meeting out of state. My brain distorts how I process this information and makes decisions about it based on anxiety. I don't just think, "This could be a scam." I think, "This is a scam. It isn't real. You are being catfished into a human trafficking ring and you are going to get taken to some far off land and never heard from again. You are going to get on an airplane and if you don't shit yourself three times during the boarding process, the flight will crash a you will die. If you don't die in a fiery plane crash that takes out at least nine city blocks and creates an insurmountable number of human and animal casualties, you will be whisked away to a different location than you think, and then you will be forced into slavery. Because here is every statistic you ever learned about human trafficking.... And since that's not bad enough let's not forget that when you are trafficked no one will understand that you won't make a good slave because you are sick all the time and you will get tortured because you are too fatigued and in the bathroom too much. Wait! Will they even have bathrooms where you will go? Probably not. No, that's crazy talk. That won't happen. You aren't even going to get through airport security or board a plane without having to use the bathroom 14 times during the times they say you can't. You know, the half hour process where you have to wait on the plane and let the flight attendants go through and close all the compartments and tell people to put their seatbelts on and their tray tables in the upright position and prepare for take off. What are you going to do? You can't use the bathrooms then. You can't do this. You are going to have a major accident. Then you'll make a scene on an airplane and they will call TSA and you will get tazed on the airplane to make an example out of why you shouldn't make a scene on an airplane. Other passengers will capture the exchange on their cell phones and post it to YouTube and you will become a viral sensation but only so people can make fun of you and laugh at you. You will be the subject of three new memes and a five GIFs with funny tag lines about shitting yourself on an airplane. This isn't getting the word out about Crohn's disease in a positive light. All because you want to go to a meeting out of state.... "
Whew! Really? Yes, really.
And it only takes about ten seconds for my brain to explode into this kaleidoscope of random events that will, more than likely, never happen. It's no wonder I don't sleep. All this anxiety is just one big, long run-on sentence with no real beginning or end. It continues in a circle of potential "what if" scenarios but also backed up with facts and statistics that I somehow know. It's confusing and frustrating because I know when my anxiety is causing irrational thoughts, I just don't know how to stop it from happening. It's a continual fight just to keep myself in a basically rational state of mind and not fall down the rabbit hole into panic.
It isn't just one day of anxiety either. It won't be me sitting in an airplane fretting until the flight is over. For me, it isn't just sucking it up and doing something I don't want to do for a minute like emptying the cat litter or getting that pesky flu shot. It is literally all the days leading up to that one day. It's the fret and worry and concern and over thinking that is involved in mentally trying to prepare for every possible scenario that might occur in that one day; but also knowing I will never be fully prepared enough so I start freaking out about that. Then it's the actual event itself, which is almost never as bad as it seemed like it was going to be all the days, weeks, or sometimes months before that I worried about it. Except even knowing that doesn't ever stop the worry and it doesn't end there. It's also all the days after the event suffering extreme exhaustion and the need to come down from the high levels stress and anxiety and all the interaction with other people. The physical fatigue and genuine body pain from having to endure such a distressing ordeal coupled with the havoc that it all wreaks in my gut puts me out for days after. It's all of those days of anxiety and it's fucking exhausting.
That is just a small glimpse into the mind of my anxiety and how it causes me to think. I'm getting on the plane though, because I need to conquer the fear and prove to myself that I can do it and nothing terrible will happen. Anxiety be damned. So here's hoping I escape being human trafficked because I don't know anyone with "a particular set of skills".
(Note to self, make friends with someone with skillz!)