Living with Chronic Illness is NOT Easy!!

Can this really be happening? Could I really have just ruined Thanksgiving for my family because of this fucking HORRIBLE illness gastroparesis? Well the answer is yes… yes it happened and yes I ruined my families holiday! All because I was SICK… the dreaded 4 letter word in my house. The word everyone is terrified to hear come out of my lips! When you live with chronic illness, you come to expect and fear your flare ups! Everyday things that normal people can do like eating freaking lunch, going to the bathroom, etc… are things I am TERRIFIED to do!

 

It started the day before Thanksgiving when i woke up with a horrible migraine. And since this wasn’t my first rodeo, I knew what that meant… a flare up was coming and it was coming fast. So I immediately loaded myself up with all the emergency meds I had on hand (things like Fioricet for migraine, Zofran and Compazine for nausea, Reglan for nausea and to help me digest, and since it was really bad, I took some of my Klonopin to ease my pain and anxiety. None of those meds helped at all because I was throwing up so rapidly and violently that I couldn’t hold a single pill down.

 

That migraine kept getting stronger. As I started vomiting uncontrollably, my insides felt like they were being ripped out of my stomach and then stomped on! The pain gets so bad in my stomach that sometimes the only relief I can think of is to die! I literally wish for death when the nausea is so bad that I can’t even hold my head up and the room is spinning out of control. Now please don’t take this as me being suicidal because that’s not what I mean and that’s not what this is. This is simply about QUALITY OF LIFE! Simple… so you’d think. What I mean is that I can’t live this quality of life anymore and go one like everything is “going to get better”! IT’S NOT GETTING BETTER, IT HASN’T GOTTEN BETTER, and to be honest, IT’S ONLY GOING TO GET WORSE!

 

I can feel my body withering beneath me and it seems like nothing I do helps! How do you think positive about a situation when you know for a fact that it’s only going to get worse, not better? And I’m well aware that this disease is progressive, chronic, and terminal and that scares the SHIT out of me! I don’t want to die before I’m 40!! It’s embarrassing because I have to sit out on LIFE when I so want to be a part of things! I used to love to kayak, to swim, to climb and hike, and although I still love those things, I have to sit most of them out because of my health. It’s beyond fucking frustrating! I’m expressing my REAL, RAW feelings here and hopefully if only ONE person gets inspired to get their health in better condition, I’ll feel like I’ve contributed my part! But I am resilient and ALWAYS seem to get back up when I get knocked down. So somehow, although i don’t yet know how, I WILL get through this illness and this little device in my stomach WILL work! And that’s just all there is to it!

 

All in all, Type 1 diabetes is ultimately the culprit behind it all. And most of the time I feel like it’s my fault. When I got diagnosed in 2010, I did NOT take it seriously at all. Although I was sober and taking care of my mental health, my diabetes continued to go untreated (all through my doing). As a result, I’m in the position I’m in now. I’m lucky I haven’t lost a limb yet because I am a smoker… but not for long. Since smoking is wreaking havoc on my health and illnesses as well, it’s at least one thing I can do to help myself. And I’m pretty sure if I can kick heroin, I can kick cigarettes! So my quit date will be January 1st! That gives me a whole month to cut down to nothing, with the help of any meds, patches, pills, or WHATEVER they can give me to quit!

 

There’s some pretty awesome books out there for those of you who are, like me, suffering with a chronic illness that’s ruining your life, controlling your life, or otherwise affecting you in a negative way! Here are some links below:

You Don’t Look Sick! Living Well With Chronic Invisible Illness by Steven S. Overman MD – Great book that I have yet to read but that’s been recommended to me over and over. I’m actually asking for it for Christmas!! 🙂

How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers by Toni Bernhard – Excellent resource for both people who suffer from chronic illness and those of us who take care of them. 

Chronic Resilience: 10 Sanity-Saving Strategies for Women Coping with the Stress of Illness by Danea Horn – I can’t WAIT to read this book. I just bought it today and it can’t get to me fast enough! LOL!

If you’re interested in reading an AMAZING article about living with chronic illness, check it out here. It’s called “Living with Chronic Illness is Relentless”! This quote from it really stood out to me and hit home: “Living with chronic illness is like climbing Mt. Everest over and over again, every single day, except the territory always changes slightly. Nothing is predictable, and it’s really fucking difficult!”

And if you’d like to read more about my struggles with chronic illness, check out my other post here.

As always, sending all the love, light, and positivity I can muster to all of you now and during this Holiday season! <3

Let’s Get Serious & Talk Chronic Illness, Shall We

As I’ve alluded to in previous pages and posts, I live with two debilitating chronic illnesses. The first is Type 1 diabetes which I was diagnosed with at age 24 (8 years ago). The other chronic illness I have was caused by the diabetes and that one is called Gastroparesis (GP). GP is a very rare, disease that hardly much is known about. In fact, it is part of NORD (National Organization of Rare Disorders).

 

WHAT IS GASTROPARESIS?

What the hell is Gastroparesis, you ask? I’ll tell you… According to the NIDDK (National Institute of Diabetes and Digestive and Kidney Diseases), GP “is a disorder that slows or stops the movement of food from the stomach to the small intestine. Normally, the muscles of the stomach, which are controlled by the vagus nerve, contract to break up food and move it through the gastrointestinal (GI) tract. Gastroparesis can occur when the vagus nerve is damaged by illness or injury and the stomach muscles stop working normally. Food then moves slowly from the stomach to the small intestine or stops moving altogether”. If you’re interested in learning more about this rare disease, Click here for more information about GP.

 

 

Diagram of Digestive System

 

There is no cure and hardly ANY treatments! The only treatments are a cocktails of meds or a gastric pacemaker (aka a Vagus Nerve Stimulator). Even though my diabetes is bad… like really bad, it’s the gastroparesis that puts me in the hospital for 5-6 days at a time MANY times a year! With diabetes there is no cure… but at least there are many treatments for it. Like, for example, doing manual insulin with a needle wasn’t working for me because I have a brittle form of diabetes (which means I have uncontrollable blood sugar highs and lows). So I had to get an insulin pump to make sure I have insulin going into my body at all times. With gastroparesis, there is no treatments left after the gastric pacemaker. What do I do if it doesn’t work?

 

HOW DOES ALL THIS MAKE ME FEEL?

Living with one chronic illness is bad enough, let alone two! There are days that I am so weak I can’t move from the couch. And of course depression kicks in when you’re stuck on the couch. Then there are days when I have flare ups and I’m so sick that I can’t stop vomiting, I’m dizzy and delirious, and those are the days I get to take an ambulance ride to the hospital. This past year has been the worst for my GP. I’ve had 6 hospital stays, all that lasted longer than 3 days. And when I’m really sick with a flare up, I can’t even explain to you how debilitating it is for me.

 

I’m on SO many medications and most are 3 times a day and it’s the most frustrating thing to have your life rely on medications! It all makes me feel like a BURDEN! It’s also very embarrassing to be on a first name basis with the EMT’s in your town because you’v ridden in their ambulances so many times… or knowing all the nurses on your unit because they’ve taken care of you so many times. And don’t even get me started on the nurses and doctors who think of me as a “frequent flier” and hate me because I’m on methadone. I’m just being honest! My fiance and mom have to basically do everything for me when I’m sick (which lately has been more often than not) and they have their own lives to take care of. But that is just that evil little voice in my head telling me I’m a loser and that I burden everyone around me. I have to remember that it isn’t the TRUTH!

 

And I haven’t even mentioned what a day in the life of a type 1 diabetic looks like! Pricking my finger 8 times a day, constantly engaged in a battle of highs and lows. For example, I am NEVER hungry because of my gastroparesis but as a diabetic on insulin, I have to eat because if I don’t I’ll get a blood sugar low. This creates a total catch-22 for me because every day I get lows. So to treat my low I take glucose gel and eat some carbs to bring me back up. Then within an hour or two, I’m back up to 500. And for those of you who aren’t familiar with healthy blood sugar levels, that’s very high! So then I treat the high by taking some insulin and then the cycle starts all over again. Going to sleep not knowing if I’ll get a low while I’m sleeping and slip away and die is probably the scariest thing about having BRITTLE type 1 diabetes. But we deal with it and we go on. Because we’re fucking survivors… we’re WARRIORS of chronic illness!

Wellness Tools – 5 most effective & useful recovery tools

wellness image

Now that I have almost 6 years of continuous sobriety, I feel I’m ready to pass on all the knowledge I’ve learned over the years. It’s in my nature to help people (I’m the epitome of a “fixer” personality lol) and I feel that sharing these wellness tools I’ve learned through my recovery can only help others.

This is not to say I don’t get cravings anymore that really suck, or slide into a manic episode and get lost in my mind. But I now know how to deal with these things in a healthy way! So without further adieu, here are the top 5 things everyone should have in their wellness “toolbox”:

  1. HALT!! No, I’m not telling you to stop. HALT means Hungry, Angry, Lonely, and Tired and if you attend to those things, you’re setting yourself up for disaster. As a person in recovery who lives with 2 chronic illnesses, these things are of the utmost importance. Basically, all this acronym means is that if you take care of your most basic needs, you are setting yourself up for success! You will feel better both physically and mentally. To learn more about HALT, click here.
  2. Have a YOU day (at least once a week if you can) where the day is all about YOU! Binge your favorite Netflix series and chill on the couch all day, take a nap, take a walk outside, read that book you’ve been wanting to dive into… but whatever you do, it should be to benefit YOU! It is NOT selfish to put yourself first and make YOU a priority. For those of us who work in the field of addiction/mental health, it’s even MORE important to do this to avoid burnout, compassion fatigue, and a host of other issues. And for those of us in recovery, taking care of YOU should be your absolute #1 priority!
  3. Be thankful! For the little AND the big things in your life! This one can really put things into perspective for you and make you feel better on even your worst days. I actually do a weekly check in with myself where I make a list of some of the things I’m grateful for and it helps remind me how far I’ve come in my recovery and in my life in general. Here is a wonderful article about the benefits of making a gratitude list: https://www.chriswinfield.com/gratitude-lists/
  4. See a therapist, if necessary. There is NO shame in asking for and seeking out help for feeling sad or depressed or manic or anxious! I see a therapist twice a month and have been doing so for the last 10 years and it helps me IMMENSELY! I debated whether to include this tool in this list but finally figured that since it helped ME, it’s bound to help someone else! There are some wonderful therapists out there, therapists who’ve been where we’ve been… some of them are in recovery themselves! If you’re not comfortable talking to a therapist, seek out a Peer Support Worker. I’m a Certified Peer Specialist which is similar to a therapist except it’s NON CLINICAL! I help people by meeting them where they’re at, no matter where that is. I help them help themselves by arming them with knowledge about benefits, where to get them, how they better their life all around. And the greatest part about peer support is that it’s more of a friend/mentor relationship than a clinical relationship.
  5. Find a hobby. Even though this one sounds simple, keeping busy is one of the BEST ways to deal with mental health issues or addiction cravings. That old saying “Idle hands are the devil’s playground” applies here. Boredom can cause some of the worst cravings… but also depression, anxiety, and isolation. That’s why having something to do that you ENJOY makes all the difference for someone in recovery! Do you like sports? Join a local sports team and make some new friends. Do you like to doodle or draw? Take an art class at your local art museum or simply watch some YouTube videos about what you want to do and get going! Learn to play an instrument, start going to the gym, create a blog and get your thoughts out for the world to see… but whatever you choose to do, make sure it’s something you really enjoy and not something that feels like a chore. This one is one of my favorites because I did this about a year and a half ago with art. I had always loved to draw but I really wanted to broaden my horizons and learn to do EVERY kind of art, lol. So I taught myself and slowly built up a huge collection of art supplies. Now I can’t go a day without doing some kind of art!

If anyone is interested in learning more about wellness tools and how to make yourself feel better, there’ s a wonderful thing out there called WRAP – Wellness Recovery Action Plan and you can make one for just about anything. Here is the link to their wellness toolbox page with some more great ideas you can do for yourself! http://mentalhealthrecovery.com/info-center/wellness-toolbox/.

I hope you found this post insightful and informative. And I leave you with the knowledge that you are loved, you are light, and you are BEAUTIFUL!!

 

About My Struggle with Addiction

black and white portait

I could write an entire memoir on my struggle with addiction… So I’m going way back now. Way back and way personal. But these are my truths and I refuse to not speak them.  I grew up with a dad who was a recovering heroin and crack addict. And when I was 11, my mom couldn’t take it anymore and she left him… but unfortunately she left me too. This caused my dad to relapse once again and since he was now my sole caretaker, I was forced to grow up in an instant. He was shooting heroin and smoking crack all day everyday and didn’t make much of an effort to hide it from me. After that, I became a wild child and did everything I could do to rebel against the world. I drank a LOT, did every drug I could get my hands on, and all the while still going to school, still taking care of myself as an adult would, and still watching my dad slide into the abyss of heroin addiction. I saw my mom here and there throughout those years until I was 16 and moved in with her temporarily. It wasn’t until I was 17 that I tried heroin for the first time and I was instantly in love… wondering where this drug had been all my life. So began my love affair with the demon called heroin and that love affair quickly turned to hate as I lost everything little by little. By age 21, my dad was dying from liver disease (a complication of hepatitis C that he contracted in the 70’s) and I was at my worst phase of addiction… shooting heroin and smoking crack all day everyday. It was not a pretty life. And sadly, my dad slipped away and my mom and I had to make the decision to turn the breathing machines off because he was gone. After that day I tried to get sober and I did that by getting on Methadone Maintenance treatment. It was like a miracle drug and took all my withdrawals away… however, I wasn’t ready to stop yet and I was grieving the loss of my father so I kept using. It took me many stays in detox and rehab and periods of treatment on methadone before I finally, in 2012, got back on Methadone and was ready to get sober. And I’ve been sober ever since!

Now, I’m a HUGE advocate of Medication Assisted Treatment (MAT) for opiate addiction which, for those of you who don’t know, is the gold standard for treatment of opioid use disorder. Addiction is a DISEASE and as such, heroin is unlike other drugs in that it literally changes the brain and receptors and causes chronic relapsing (click here for an article explaining this in more depth) With MAT, such as Methadone or Suboxone, it helps repair those things. In fact, it binds to the same receptors that heroin does without causing euphoria and it takes every bit of withdrawals and cravings away. This gives the person time to get their shit together, so to speak. And whether someone is on it for the rest of their life or for only a couple of years, it’s ok. If it ain’t broke don’t fix it, right? Now I know there are a lot of people who feel strongly against MAT because they consider it “substituting one drug for another”, or they say the person on MAT isn’t actually sober, and so many other negative hurtful things. I’m here to tell you that all of those things are FALSE!

In fact, in 2015 I was part of a campaign that the mayor of Boston put together called “StateWithoutStigMA”. It’s goal was to obliterate the stigma associated with mental illness and addiction. It was amazing because I got to tell my recovery story to the WORLD and how stigma has affected me throughout my life. The picture you see at the top of this post was actually taken specifically for the campaign and was used on banners and billboards throughout the state. It was one of my proudest moments and what I consider, one of my biggest accomplishments. That’s one of the reasons I created this website because the more people who see me coming forward and telling my story without shame, the more people will do the same. I’m not ashamed of my past anymore and I refuse to be quiet about how stigma equals death!

I will be writing a lot more about this topic throughout this blog and I would love to know YOUR thoughts on the subject. And please know I am 100% non-judgemental and even if you disagree with me, you still have a voice here!

Goodnight, my lovelies! And remember, you are LOVED, you are LIGHT, and you are BEAUTIFUL!

First Blog Post Ever… and a little about me!

Here I am! Writing my first blog post EVER! I’m honestly not sure why I didn’t do this years ago but past is past right? So you all have to bear with me while I figure this shit out, ok?

If you read the Who Am I page of my blog, then you know what this whole thing is all about. What you don’t know is why I’m doing this, how I got sober, what I do for work, or how I learned to become an artist. So I thought I’d share a little bit about my background with all you beautiful, wonderful souls.

First of all, I created this blog for a couple different reasons. One was to spread as much info and love on the healing power of art and then show people simple tutorials so that they can create beautiful pieces of art, even if they have no art experience at all! I wanted to make things simple for people to create things that make them feel good…. things that make them happy… things they can give as gifts…

The other reason I created this blog was to show people that RECOVERY IS REAL! No matter what addiction, mental illness, etc… you may have, people can and DO recover. And art and creativity in general can sometimes facilitate that recovery! I want people to see how creativity has affected my life in a positive way. I’m all about sharing as many skills, techniques, strategies, as I can to help people realize their creative potential and to also get and maintain their sobriety!

We’re all beautiful fucking rock stars! And I’m here to help you see that!

Now… the big question… how did I get sober? That’s a very loaded question.  After almost a decade of heroin use, I finally got sick and tired of being sick and tired (the old adage) and decided to seek treatment through methadone maintenance (Medication Assisted Treatment). One of the things you’ll learn about me through this blog is that I’m a huge proponent of harm reduction and multiple pathways to recovery. There is not a one sized fits all route to recovery. It’s different for everyone and for me that route was MAT (Medication Assisted Treatment). It literally saved my life. I’m finally, after 6 years of sobriety thanks to MAT, ready to get off the program and start living without methadone. So I am tapering currently and will officially be off of my medication in May and I am so excited!

My work… I do something that not many people in this world can do. I tell my story of recovery and of my days in active addiction for a living. I am a Certified Peer Engagement Specialist for the homeless and mentally ill population in my area. This means that I use my lived experience as someone who has dealt with addiction, mental illness, and homeless in many points in my life as a way to help others in similar situations. I help connect them to services, housing, benefits, etc… Basically, I help the forgotten ones.

And finally, how I learned to become an artist? I didn’t! I’m 100% self-taught! I enjoy all kinds of art including collage, mixed media, watercolor, acrylic, encaustics, and so much more! Art is absolutely my drug now! In fact, I cannot go a day without sketching or creating some kind of art, even if only for 10 minutes, everyday. If I don’t, I have massive anxiety! Does anyone else feel like that? It has become the ultimate wellness tool for myself. And if I don’t take good care of myself, bad things tend to happen. I also have an Etsy store and as soon as I figure out how to link that to my blog, I will! LOL! I’m still so new to this stuff! Ok… It’s getting late and I’m hungry.

So goodnight… and just in case you haven’t heard it lately, you are loved, you are light, and you are BEAUTIFUL!