Living in Chronic Pain part 2

After writing about living with chronic pain, I started thinking that there were so many other areas that this topic creeps into.

When you are in a lot of pain, sleep is generally an issue. When sleep is an issue, you are usually tired throughout the day. When you are feeling lethargic (and sometimes moody due to lack of sleep), you reach for unhealthy foods. When your diet becomes filled with too much unhealthy crap, you begin to feel guilty and kinda bad about yourself. Add to that, lack of sleep doesn’t usually make you pumped for the gym. Vicious cycle.

This aspect of pain is really getting to me now. I love going to the gym when I am feeling well (and a lot of times when I don’t). Working out makes me feel good about myself. It clears my head and helps me a tremendous amount, not only physically but emotionally too. More emotionally I think. Lately, I haven’t been getting more than a couple hours of sleep a night. My migraines are bad. I am not working out. I am reaching for unhealthy snacks because I need energy. I feel like a lazy bum and I HATE IT.

I wish I had some words of wisdom about this. But I just needed to get it out. I know how much reading some other peoples “rants” helps me to know I am not alone.

It does help me to break things down a little bit though. I know everything feeds off each other. If I could deal with my pain, I would sleep better. Or, if I could deal with sleep maybe my pain would be a little easier to manage. And once sleep and pain management is dealt with, the other things will fall into place. It is just getting there that is hard.

How Do I Approach New Doctors Now?

I wanted to expand on what I wrote the other day about needing my dogs to get me through many months of having terrible adverse reactions to a medication I was prescribed for sleep.

I have an appointment with a doctor at a sleep clinic in a couple weeks. Of course, insurance will only cover 30percent once I meet my deductible which thankfully I haven’t. But regardless, this appointment is just an office visit. I am worried this doctor won’t be able to help me or think I am stubborn for not wanting to try certain medications.

When I was put on the sleep medicine that was disastrous for me from the end of 2011 to April of 2012, it petrified me beyond belief. I think it subconsciously made me so afraid to try any new medication because of how close I came to ending my own life.

It wasn’t just that though. It was actually more scary that no one could help me. With the help of my parents who could only really support me, I had to figure it all out for myself. I was cowering in my doctors office behind my mom. My parents called him multiple times because they were so worried. I was angry and hostile. This was a doctor I had been seeing on and off for six years. He knew I wasn’t like that. He knew I had been through terrible physical situations before but never reacted like a goddamn crazy lunatic.

When I saw the bottle that said “Call your doctor if you experience any type of mood changes, hostility or agitation” I thought I was going to lose my mind. In a good and bad way.

On one hand, the fact that I may have found the answer to my change in mood and behavior made me hopeful but on the other, was I really doing this to myself? Were my actions and behaviors dictated by a medication that I continuously put in my system day after day without realizing? Was I putting my family through hell all because of some artificial medication that everyone promised would help me (and who I trusted)?

How do I approach any new doctor now? After spending so many months the way I was {with no doctor offering this as a possible solution}, how can I deal with my need for medication now? I know I need to bite the bullet and give in to a little more help than I have allowed but… I can’t. I am thankfully not in as vulnerable a position as I have been over the years so why would I want to possibly tamper with that? If I go to the doctor, ingest whatever medication he/she suggests, and it doesn’t go well… I won’t have the upper hand anymore. I know that sounds odd but I need to feel like I am in control of my body and my life. I never ever want to feel like I did in back in 2011/2012. But I also need help in certain areas which terrifies me.

I am a pretty open person in most areas of my life. When it comes to my health, I am not anymore. I have the very strong mentality of “I know better than any doctor.” The times I let go and allowed someone to take more control of my health, I lost so much. I never want to go through that again because I don’t know if I could survive anymore.

Pill popping ……responsibly

Marisa Lauren:

This is an amazing post that I can relate to very much. We all need to talk about these things. It’s hard, it’s painful, and it drudges up a lot in us but … We need to share these experiences. We are not alone!!!

Originally posted on fibromombie:

Let’s talk drugs. I take Tramadol. Its a life saver and safe for nursing, which is most important. For the most part, it manages my pain tremendously. I take 50 mg’s 1-2 times a day, most days. Lately……everyday. Without it I would be bedridden many days and more than likely fired from my job. I go through major periods of guilt because I don’t like that I have to take a pill to make myself feel better. I used to be a drug addict. Hardcore. For many years. Some people would say I am on a slippery slope by taking an opioid. And to them I say thanks for the concern but SHUT THE FUCK UP. Walk a day in my shoes. My life is SO much different than when I was “using”. I am a wife and I am a mother. I am responsible for not only my own…

View original 793 more words

Happy Birthday to the dogs who saved my life!

I want to wish my sweet dogs a very happy birthday today. I truly cannot thank these girls enough for all they have done for me.

April 6, 2011 was the day we got Holli, just three weeks after my chocolate lab Kassie passed. I wasn’t even two months out of my first surgery of the year- my last kock pouch surgery. After spending six weeks following the surgery with a tube in my stomach, I was so looking forward to getting back to my life. But after this surgery, I was different emotionally. I was scared of something going wrong every moment of everyday. I had obviously experienced feelings like this before but this was the first time in the six years of living with a kock pouch that I was genuinely anxious all of the time. I was emotionally the worst I had been since I was diagnosed with ulcerative colitis in the year 2000. 2011

In addition, the nightmares I always had every once and a while about the recovery room and the hospital no longer only occurred sparatically. I was having those types of dreams every night, and some nights wouldn’t even sleep because of it.

After we got Holli, my parents needed to go away for a few nights for my brother’s college graduation and my cousin’s Bar Mitzvah. I wasn’t really in any position to go so I stayed home with Holli who was absolutely unbelievable. She layed in bed with me all day, resting her head on my chest which helps my anxiety more than meds sometimes. Slept with me every night and began waking me up from my nightmares. Wouldn’t bother me to eat early in the morning. It was amazing how much different I felt having her around. I was less afraid and if I began to feel panicky for some reason, just her being there made those feelings pretty much disappear.


In August 2011, my family and I got Phoebe who was just four months old at the time. This dog was the happiest thing I had ever seen in my entire life. There was no way you could look at her and not crack a smile. (If you check out my instagram, @rissylauren, I post tons of cute pictures/videos of her)

Phoebe provided the hope I so desperately needed after my second surgery of that year; losing my fight against having an ostomy

I was also given a sleep medication that was causing me to feel very suicidal along with other horrible side effects. It took many months before I figured out the reason behind those feelings. I didn’t understand it and to say I was afraid is a huge understatement. I didn’t think I would survive the year. I knew I wasn’t thrilled about what I was dealing with but I didn’t understand why all of a sudden I had no positive thoughts. I would constantly have periods of screaming at the top of my lungs, crying nonstop with no way to control any of my emotions. I would tell my parents all of the time that I felt like there was this black hole in me. The only thing that had a chance of calming me down was holli and phoebe. If there was anything that could reach me during this time, it was them.

Yesterday (4/5/14), watching basketball

Yesterday (4/5/14), watching basketball

As I look back on that period of my life, I honestly don’t know if I would still be here without them.

I know some people think dogs are just pets and humanizing them is pretty silly. I have always loved animals and I always grew up with dogs. It wasn’t until I got these dogs that I realized how essential they are in our lives. They saved my life. No exageration. They absolutely did. And I am so grateful to them.

Happy birthday my furhumans!

Living in Chronic Pain

When I think back on the times I used pain medications to get through the day, I feel like I was a failure. I am filled with so much guilt it is unbelievable. But then I think…

If I didn’t have pain medication, I wouldn’t have survived long enough to still be here. 

I am so far from being dramatic because while I completely and totally understand the argument about how we need harsh regulations on pain medications, there is another side to it. The patients side.

I have had severe ulcerative colitis since I was 13 years old, gone through 14 major operations including the loss of my entire large intestine, rectum and anus and now live with an ileostomy. Since my diagnosis, I have had so many complications that has affected every part of my body. I never had a break. It affected my sleep and since the age of 16, I have been dealing with chronic DAILY migraines. Not kidding. I have a migraine every single solitary day. Some days I can slap a smile on my face, stay busy and distracted and go on about my business. Other days I can’t. I have been to more doctors than I even remember and tried more medications than anyone ever should put in their body. But here I am now, almost 14 years following my IBD diagnosis and 11 years of suffering with debilitating migraines. I am still in pain every single day. Regardless if you see it in me. I live my life in agony. 

At around 6am when I woke up, my head was terrible. When I start having pain radiating down my neck, I know it is going to be a bad migraine day. I was going back and forth in my mind about whether or not I should take something for the pain right then and there or see if trying to sleep a little bit more would help. I decided not to take anything and tried to “sleep it off” which never works but I was hopeful. When I woke back up an hour later, I was in so much pain.

If I took something immediately would it have been better? I am not sure but doubtful. I have tried to take pain meds as soon as I know pain is getting too bad but sometimes I just need to take more later. So I try to hold off. I don’t want to wake up, take something to try to ward it off only to need another dose a few hours later. I don’t want to take medications. I hate them.

Today, I had an appointment that I wanted to keep. I didn’t want to put things off. I wanted to be able to carry on about my day. I cannot stand being held back by pain. And I have a HUGE pain tolerance. I have survived waking up from major surgery WITHOUT ANY PAIN MEDICATIONS. I have gone through hell and back and never complain about things unless its really, really bad.

But I am sick and tired of living in pain.

The only reason I was able to get my head off the pillow this morning was because I took something for my migraine. And now I can function for a few hours. But, the medication only allows me 10 migraines a month. And I always have more than that and sometimes need two doses in one day. So where does that leave me? Should I have held off on taking something just in case things get really bad at the end of the month? Was it the right thing to do to try to help myself in the moment? What will my doctor think if I tell him I have needed to use the pain medication more than usual? Will he think I am just a wimp who can’t handle a little pain? Will he get annoyed at me if I am honest in saying the preventative medication does nothing and the only thing that helps is taking pain meds as needed? Should I ween myself off the preventative (seeing as I have been on and off it for years) so I don’t have to waste time explaining things my doctor can’t fathom? And then just continue treating the pain as it comes?

Pain is detrimental to your overall health. It destroys your spirit, it destroys your sleep, it destroys your brain, it destroys your mood. It is just awful to deal with everyday.

No one wants to take medications. No one wants to feel like they can’t have the day they want unless they do whatever necessary to relieve themselves of suffering. No one wants the guilt of needing to take medication. No one wants to have these conversations with doctors. NO ONE WANTS A LIFE OF PAIN.

But given that there are some things out of our control and so many people who live in debilitating pain everyday, why should we feel guilty about trying to help ourselves? As the reality of the last 14 years gets clearer, I feel less and less guilt about helping myself. I did what I needed to do to survive. We all do what we have to. I just wish there was a little more understanding from doctors and the government about what it means to live in chronic pain.


#GetYourBellyOut Campaign for IBD Awareness





After hearing about the #GetYourBellyOut campaign for IBD awareness on the roundtable Thursday night, I felt inspired. I have never posted a picture of my stomach like this before and never thought I would see the day when I would be okay sharing with the world all that ulcerative colitis has done to me.

Thank you for all of your love and support. It means more to me than any of you realize. You guys keep me feeling strong! <3

WEGO Health Awards

Last night after watching some of the WEGO Health awards ceremony, I started to get really emotional. My boyfriend was the winner of the Best in Show: Google Plus for his work with the IBD roundtable. I think I got so wrapped up in the ceremonial parts of the award (like the awesome basket of goodies WEGO sends finalists, taking pictures, talking about what a huge accomplishment this all is in a semi generic way) that I forgot for a moment that all of these advocates do what they do for a real reason.

Most people are advocates because they have gone through things in their life and want to share their experiences with the world in order to help themselves cope and make lives easier for others going through similar struggles. It is empowering to feel like you are taking ownership and control of the thing that once plagued your existence. Advocacy is a way to fight back and do an enormous amount of good in the process.

When I saw a few of the winners crying at the end, it made me tear up. I didn’t know most of them but to think about all they have been through in order to get to where they are now…some still struggling, but making a lot of progress along the way. It is both inspiring yet upsetting to think of the pain so many of us have had to deal with.

I go through periods where I try to think of my advocacy like a job. I also try my best to look at other people’s advocacy like they are coworkers/partners in our mission but if I let too much sink in, I wouldn’t be able to be a productive member of our community. I know this isn’t a job where we all work together to figure out goals as a team. We all have different missions, we are all going through different things, and we all have different amounts of time we want to dedicate to our advocacy.

I have so much admiration and respect for all the winners, finalists and advocates nominated for the WEGO Health Health Activist Awards (#HAAwards)

And to Frank…. thank you for being such a wonderful force of good in not only my life, but the entire Crohn’s and Ulcerative Colitis community.


Get every new post delivered to your Inbox.

Join 1,813 other followers