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Sunday, November 3, 2019

Be a part of this SURVEY

The Gastrointestinal Society is conducting a worldwide survey called "IBD Patients: What's Missing In Your Care?" and you can be a part of it.  CLICK HERE

I took this survey and it's very thorough.  I like the questions it asks and I think the information collected would benefit how IBD patients are cared for by health care professionals. 

The Gastrointestinal Society is a registered charity in Canada leading the country in providing trusted, evidence-based information on all areas of the gastrointestinal (GI) tract.  Their mission is to improve the lives of people with GI and liver conditions, supporting research, advocating for appropriate patient access to healthcare, and promoting GI and liver health.  You can learn more about the Gastrointestinal Society at

Tuesday, October 15, 2019

The Continuing Saga of the Medical Marijuana Dispensary Visits

Several more Medical Marijuana Dispensaries have opened in my local area and I have been able to visit many of them.  I actually have a least favorite now and I hate to say, it is probably exactly what the majority of people think of when they think "marijuana dispensary".  From the locations, to actually getting into the building and then everything that happens when you get inside, truth be told, it's just awful.  Let's review...

This particular dispensary is located on a side street smack in the middle of a busy downtown area.  (I'm specifically not naming cities or company names because I'd rather not get sued for my opinion.)  It's hard to get to and if you aren't looking you will miss it.  You have to go down another side street to get to the parking area behind the building - and you can only go one way because the other way around is a one way street so if you are like me and terrible with directions and finding things when you are driving, you end up driving right past the place and going two blocks down to turn around.

Once successfully parked, finding the actual entrance was even a little difficult.  Not sure exactly which side to go around and thinking the door should be at the front of the building made things even more confusing.  The door is actually on the same side as the one way street so you don't see it because you can't go down that way to enter the parking lot.  Finally though, I managed to find the door and quickly realized it was locked and I had to wait for someone to buzz me in.  Standing outside this building and waiting did not make me feel very safe.  Maybe it's the city, maybe it's the specific area of the city.  Regardless, I really felt nervous waiting for someone to open the door for me.

After I was granted access, I opened the door and it hit me immediately - the stench of marijuana so strong I honestly expected someone (or several people actually) to be standing in the lobby with an open baggie rolling a blunt.  No one was though, it just smelled that bad.  It took an excessively long amount of time for the person BEHIND BULLET PROOF GLASS to verify my credentials and check me in.  After that, I was asked to sit down and wait.  I can't lie when I say I was feeling a little out of place and more anxious than I did at any of the other dispensaries.  Some other people came in; people that, I'm sorry to say, give medical marijuana usage a bad name.  I hate to stereotype but these people were the very definition of the term "junkies".  Technically, I was on the bad side of town and I would imagine that was the reason for all the extra security like the locked doors, bullet proof glass and cameras everywhere, but it was the clientele that made me nervous.  Every single person that walked into that dispensary commented on the smell, made loud and obnoxious references to smoking weed and using other drugs, and seriously needed work on their personal hygiene.  I don't mind smoking weed references, but the shooting heroin and hot railing meth talk was a bit much.

Once I was granted access to the back of the dispensary, where they actually keep the product, I noticed the smell wasn't nearly as bad as it was in the lobby.  Perhaps the clientele had something to do with that, though when I first came in no one was even in the lobby but me.  Who knows.  The budtender guy- or weed barista as I like to call them - handed me a sheet of paper with the different selections they had available.  I know I am old and my vision isn't what it used to be (hell, it's always been bad) but this paper had so much crammed onto it in about 6 point font that I simply could not even read it.  When I explained various symptoms I was having and and asked what strains they had to offer that could help, the budtender just told me what he liked.  Not super informative but whatever.  I figured it out.  I noticed their prices were much less expensive than some of the other dispensaries in the area, even the one just across town.  Location, location, location I guess.

Everyone that worked there was basically nice enough and nothing too terrible was technically wrong with the place.  I just prefer the other locations.  I'm glad there is a facility that is able to provide medical marijuana to the clientele in that area and I hope that their usage is above board.  However, from the vibe I was getting, I'm not sure it is.  And that right there is what bothers me about all of this. Visiting this particular Medical Marijuana Dispensary made me feel no different than visiting my friendly neighborhood drug dealer.  Maybe that works for some people, but it's just not the experience I prefer.  It's still good to know that the product isn't going to be mixed or laced with other things and what you purchase is safe; so there is that.

Please enjoy this photo of my new haircut.

Even though I feel like a total Karen after writing this, I promise, I didn't ask to speak to the manager!

Thursday, September 26, 2019

Let's make them plushies!

Take a gander at this link to help make the Chargimals into plushies so we can take them everywhere with us!!  Pass along this link to everyone you know because every little bit helps!!  THANK YOU!!!

Tuesday, September 3, 2019

The Unchargeables & The Chargimals

Due to my long list of chronic illnesses, I haven't been able to gainfully work in nearly six years.  When I had to stop working in the real world, I did my best to do what I could where I could.  Having so many unpredictable illnesses makes keeping a work schedule more than impossible. (Keeping any kind of schedule is nearly impossible!) So I just tried my best to be a mom, be a wife, take care of my family and make the best of the situation that life handed me.  Because I wasn't working in the traditional sense, or bringing in the income that I once did,  I always just felt like a burden.  As much as I knew in my head that wasn't the case, it didn't help my heart from feeling that way.  Over the years things kept changing, my daughter grew up, life happened, and the family I worked so hard to sustain suffered and eventually fell apart.  

It had been a lot of years since I was Corporate America Jenni or even Nurse Jenni.  I wasn't wife Jenni anymore, and when my daughter grew up and moved on with her own life, it somehow changed the Mom Jenni part of me too.  So where did that leave me?  I felt like I had lost myself and everything that once made me who I was.

After a lot of soul searching, a healthy dose of therapy, and more emotional breakdowns than I care to remember, I realized there was one little part of me left that I had nearly forgotten about.  There was still Writer Jenni.  Sure, I occasionally wrote posts on my blog over the years, but what I remembered was that I used to write stories.  Fun, fictional stories that were a great outlet and allowed me to flex my creativity muscles. 

I found an online community for the chronically ill called The Unchargeables.  I don't remember exactly how or when I found them, but when I did a light bulb went off.  One thing led to another and I met Natalie, the founder of The Unchargeables, and she introduced me to The Chargimals, the chronic illness monsters that live in an alternate universe and have the same chronic illnesses we have.  More about that in a minute.

So what in the world is The Unchargeables? 👈 Click it! Go ahead, I'll wait.  You'll see that it is a community for the chronically ill.  It is named so because those with chronic illness are always low on energy and can't be charged enough. It's like living with a low battery.

The Unchargeables have a wide variety of support platforms which bring people together from all over the world.  Through these platforms, members can connect and share their happy moments, sad moments, frustrating moments and even their scary moments with others who understand exactly what it's like to live with both visible and invisible illnesses. Small victories are celebrated for the great accomplishments they are because, after all, doing anything when you are chronically ill is much harder than doing it when you are healthy. The Unchargeables connect people by making them feel included, understood, and most importantly, by letting them know that they are not alone. AND, they have a cool store where you can get all kind of neat things that pertain to your specific chronic illness. I think that's what the kids these days call 'swag'!

But wait, there's more!! Meet The Chargimals! These are just a few of the 30+ monsters that are here to make living with chronic illness a little easier.

Foggy, Annie and Pod
These little guys are super neat and they have some really great adventures together despite being chronically ill. But the best part (because it's my blog and I can boast all I want) is that I am the one writing their adventures! There are some really big plans in the works for the these monsters and I hope you follow along and see all the cool things that are happening.  What's really great is that they wait for me.  I write when I feel okay.  I don't have to keep a certain schedule and all my unpredictable illnesses just provide me with more things to write about. You won't find that in Corporate America!

You can find The Chargimals at The Unchargeables Shop HERE.  You can find them on Instagram HERE and you can find them on Facebook HERE.  

This is what I have been up to lately.  Finding a purpose again.. Helping people again.  Doing what I have loved doing since I was in the 4th grade.  I'm Writer Jenni and I am elated that I rediscovered her. 

Friday, August 9, 2019

Doing the things

When you have battled severe depression as long as I have, you eventually get a sense for when you are about to fall into that deep pit of despair again.  You feel yourself clinging onto the sides of the dark abyss of nothingness, fearfully clawing and digging to keep yourself from being totally consumed.

I have been struggling for a while now, clawing and digging into the sides of the abyss.  Desperately trying to keep my head up and fearing if I let go, just for a minute, even one second, that I will fall so far down I won't recover this time.  Sometimes I feel so broken that I don't even want to hang on anymore.  Sometimes I just don't want to fight at all.  Even though I've been here many times before, each time it feels worse than the last.  I'm tired.  I'm sad.  I'm hurting.  I get so tired of feeling sad and hurt that I try to do the things - the proactive things to make sure I don't fall further down.  I do the self care thing, the getting out of bed every day thing, the eating thing, the going to my therapy appointments thing, the taking my medication thing, the talking to other people and socializing as much as possible thing.  It's really hard and I hate it.  I would much rather just stay in bed with the covers over my head and do the being alone thing.  But instead I'm doing all the things I don't feel like doing in hopes that I will eventually start feeling better, except it isn't working.  I'm still here, still falling, still hiding behind the happy face mask and making everything on the outside appear as "normal" as possible all the while inside I feel like I'm fading away. It feels like the only thing I am doing well at is the depression thing.

So what happens when you do all the right things and nothing works?  I'm doing all the things and I still just want to let go of the sides, stop clawing and digging in to hang on and just allow myself to be swallowed up by the never-ending dark abyss.  I'm not really suicidal. I'm not even angry, there is no rage or irritability.  I just feel incredibly empty and sad.  But those aren't even the right words for it.  I can't find words to exactly describe the feeling I have.  All I know is that is unyielding and unwavering and doing the things isn't working.  Or are they?

These things I'm doing - getting up, getting dressed, eating, managing - they are working, technically.  Doing these things is what is keeping me from completely succumbing to the deep, dark bad place that I really don't want to go to.  If I stopped doing them there would be nothing for me to do.  Right now they are my purpose.  They are what I am clinging to so I can eventually get to a better place mentally.  If the only thing I do in a day is get out of bed and take a shower and make it through the whole day without giving up then that's enough for now.  It might not seem like much, but I assure you those menial tasks that people do in a day are really very hard things to do when you are at war with your own mind.

Friday, July 26, 2019

Clinical Trials and Whatnot

Back in nursing school, (Wow! That was 10 years ago!?!) I remember learning about how clinical trials work and all the time and energy it takes to actually get a drug approved for use.  Did you know many clinical trials are still lacking volunteers?  Maybe part of that reason is because people don't really understand a lot about the process of clinical trials and why they are so important. Therefore, I'd like to shed a little light on the topic.

Basically a clinical trial is where people, with or without a specific disease, try a certain type of medication at a certain dosage for a certain length of time and all the information about how they and their disease react to the medication is gathered and evaluated to determine if the medication would be of value in treating that specific disease or if further research and testing is needed.  Sounds like being a lab rat you say?  Well, not exactly.

Clinical trials have various phases.  Here is a little breakdown in a handy dandy little graphic:

Now I could sit here and continue to type out a bunch of regurgitated facts and figures about clinical drug trials and how they work and why you should consider doing one, but I won't.  You can research all of that on your own if you really want to know.  But what will do is tell you a few of my own thoughts about clinical trials.  I am going to specifically speak about Crohn's Disease but it stands for all drugs and clinical trials for all diseases.

Allow me to step up here...

All new drugs coming out to help Crohn's Disease have to go through clinical trials.  I know for myself, as well as so many others who suffer from Crohn's Disease, we want options.  When I was first diagnosed with Crohn's there were not many options for treatment. Remicade was still very, very new; so new, in fact, that my doctor refused to let me try it.  He didn't want to use the "big guns" because there wasn't enough information out about the long term effects of Remicade and he didn't want me to not be able to have that drug as an option in the future if and when my Crohn's advanced.  Now, nearly 25 years later, there is not only Remicade but also Humira, Stelara and Entyvio as well as several others - so lots of "big guns" and lots of options.  These drugs wouldn't be options at all though without clinical trials and the clinical trials wouldn't be possible if people didn't volunteer to be a part of them.

I have never been a part of a clinical trial, though I would seriously consider it if I met the criteria for one.  Not only would it maybe help me get better, but it would also further the advancement in finding treatments for Crohn's disease that actually work so people - my people, my friends with Crohn's Disease - can stop suffering from this terrible disease. Medications need to be researched and studied so future generations no longer have to suffer like we are.  Maybe there isn't a magical cure, yet, but there are treatments that need to be explored as ways to at least alleviate some of the symptoms of Crohn's.  And who knows, maybe there is a cure out there somewhere, but we won't know unless we research.

I took a little pole via social media and found a huge, positive response about clinical trials.  Many people would participate if given the opportunity and many others had already participated and had such a positive experience they would definitely do it again.  One of my friends, who is quite ill currently and just recently got home from the hospital, posted this message and it just drives home the importance of getting new drugs tested and on the market:

"XYZ is the only drug left on the market I haven't tried, aka failed. We're hopeful, because it's looking like 2020/2021 before another drug becomes available.  So now we wait." ~ Click TheGameOfCrohns to follow her Instagram! 

Clearly, we still need more options.  I really can't say anything more than that.

So, how can you find information about clinical trials?  If you are like me, and suffer with crippling paranoia and think every single thing you read on social media is a lie or a scam, chances are you aren't going to want to click on any of those sponsored ads you see while scrolling through your feed.  I see lots of ads for clinical trials and it gets a little cumbersome trying to determine if it is a legitimate source of information or just some randomness that will only bog down my computer with spyware.  So I did something about it. I wanted to take a more active roll in helping patients find these clinical trials so I partnered with CureClick and became an Ambassador.  That means Jenni's Guts is now a trusted source for you to look to if you want legitimate information about clinical trials.  You can see more specific clinical trial information in the new Clinical Trials tab up top. 

CureClick partners with well known members of online communities (like blogs, websites and social media sites) to help spread the word about clinical trials.  This allows you to find legitimate information about clinical trials on the sites you are already visiting regularly.  Click THIS LINK to learn more, and as always, please contact me if you have any questions at

Tuesday, July 2, 2019

WEGO Health Awards

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.