#SelfCareMvmt Part 3: Spiritual Health

Welcome to another week of the #SelfCareMvmt series! If you’ve missed the first 2 weeks, you can learn about my ‘Daily Little Accomplishments,’ and ‘Physical Self-Care’ in my last two blog posts. This week we’re going to be talking about Spiritual Self-Care. This is always a loaded topic for me, but I think there is still benefit in my life for this type of practice.
First things first, I’m an Atheist. So when I talk about Spiritual Self-Care, it’s from a 100%img_1440 non-religious standpoint. (Disclaimer: I wholeheartedly respect all beliefs, and I expect that same respect towards me). Moving on! Being spiritual can mean a number of different things: religion, meditation, praying, mental wellness, mindfulness, yoga, and so much more.
I’ve been practicing yoga on and off since I was in high school. So maybe 15 years or so? Yoga has always been a calming force in my life. It’s one of the best go-to centering practices. I admit that I am completely out of my yoga routine and haven’t practiced in almost 6 months. Yikes! I am really pushing myself to get in the right mental place to start yoga back up again.


I think that’s a big part of this concept of spiritual self-care. To me, it’s about being in the right place mentally. Mindfulness is one of the most challenging and beneficial practices I have ever tried. Various therapists have taught me how to practice mindfulness in some shape or form. It’s such an important tactic for someone like me. I am such a high anxiety person that a normal day is like there is a vice around my chest. It’s pretty bad. And I know I need to get better at managing that. I have no shame in taking anti-anxiety medications when needed. I don’t think there’s anything wrong with that. But I will say that it takes more than just medications. I think mindfulness plays a large role in calming a person down, as well as just taking a step back and realigning your priorities.
It’s hard, I won’t lie. Mindfulness is a constant practice and work of art. But I think when you do take the time for it, it really works. Spiritual self-care is just as important as physical self-care. You can take care of your body and chronic diseases all you want, but if you’re not taking care of spiritual health and/or mental health I think it’s all for nothing. Even just waking up and taking 5 minutes to just breathe and go over your day before you get going is a game changer.



What are some of your favorite ways to practice spiritual self-care?
Are you interested in learning more about the #SELFCAREMVMT? Join through the website or follow the hashtag on social media.





Chronically Kristin

Dwelling On The Quell

Disclaimer: I have been given this product as part of a product review through the Chronic Illness Bloggers network. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company.

If you’re like me, you know that medications are sometimes necessary but holistic methods are embraced when possible. Having multiple chronic diseases and suffering from severe chronic pain forces you to make medication decisions on a daily basis. As much as I’m not afraid to admit if I need to take pain medication, I stay away from it the vast majority of the time. Simply stated, this is because I don’t want to destroy my liver and kidneys by the time I’m 50 or younger. Most days I just grin and bear it. But what if there are options that are medication free for reducing my level of pain every day? Sign me up, I say!



Well, then let me tell you about Quell. Side note: I have rhymed my last two sentences–I promise to not go all Dr. Seuss on you guys! Anyway, what is Quell? Quell is a 100% drug-free, wearable pain relief device. The Quell device fits into a little pocket on a band that wraps around your upper calf. on the inside of the band, you connect the Quell device to a strip of electrodes that sticks to your skin. This is how Quell delivers the pain relief.


When I first opened the Quell box and put the device on my calf, I thought there was no way that this device was going to help my spine pain, hip pain, and widespread Fibromyalgia pain if it was sitting on a part of my body NOT in pain. However, the therapy that Quell uses, called OptiTherapy®, stimulated the sensory nerves in your leg which then travels up to the brain. The signal in the brain then triggers endogenous opioids into the spine. This provides widespread relief from chronic pain. Cool, right? And you don’t need to wear a Quell device on each leg, just one will work fine.


I wore the Quell device for about 3 weeks before writing this review and I was definitely pleased with the results. I don’t know that I would completely replace my pain management regime with the Quell device, but it is absolutely a beneficial addition. I can’t claim to know enough about nerves and the signals in the brain; however, I did find that the Quell device almost “distracted” me enough from some of my pain that it wasn’t in the forefront of my brain. Now, I don’t know if distraction is really the same as relief in this case, but that’s the best way to explain my experience with Quell.


Therapy Control App Image[2]

Another great benefit of Quell is their in depth customer service. Quell Customer Care did a great job of explaining how Quell works to relieve pain when I had doubts that it would work on the type and locations of my pain. I felt much more informed after speaking with them. If you feel like you need more information than the manual provides, have issues with the device, or simply want to learn more, I urge you to contact them at customercare@quellrelief.com or by phone at 800-204-6577.


I’ve mentioned this in so many previous blog posts, but sleep is a real issue for me. Between being exhausted 24/7, needing sleep medication to stay asleep, and working too much, sleep is constantly on my mind. I always want to nap, and I count down until I can sleep each day (pathetic, I know). So when I heard Quell also tracks sleep quality, my ears definitely perked up. In fact, I think the Quell device might be more accurate in tracking my sleep than my FitBit. I need to use it a bit longer to know for sure, but it looks promising. As you’ll see in my screenshots, Quell measures the time in bed, time asleep, sleep quality, sleep on back, sleep on L & R, position changes, leg movements, and time out of bed. Super comprehensive!



As you can see, I’d highly recommend giving the Quell device a try if you suffer from chronic pain. If anything, it’s much safer than significant use of pain medications or opioids. To learn more about Quell and purchase a device for yourself, visit their website.


All of the mentioned tracking and dashboards are easily managed through an app available by download on both iPhone and Android. The app allows you to start and stop therapy sessions, increase or decrease intensity, check battery and electrode life, and much more. Each therapy session is 60 minutes every other hour.


If you’re still looking for more information and educational resources about the Quell device, check out the User Manual, Instructional Videos, and Troubleshooting Tips within the Quell User section of their website. All you have to do is register your device and you’ll receive product updates and news. You can also follow Quell on Facebook and Twitter.

Already tried the Quell device? Id love to hear about your experiences in the comments section below!





Chronically Kristin

Guest Blogger: Amy Saunders of “Living with ME”

Happy Wednesday, friends! It’s time for another guest blog! As I stated in the first guest blog, if you are interested in guest blogging on Chronically Kristin, please email me here: kristin.coppens@gmail.com.


For our next guest post, I’m excited to introduce to you Amy Saunders from Living with ME. Thanks so much for participating, Amy!:)



img_0118 (1)

Name: Amy Saunders
Age at Diagnosis: 18
Diseases/Diagnoses: ME/CFS
Blog: Living with ME
Twitter: @amysaunders08
Instagram: @amysaunders08
Pinterest: amysaunders08
Bloglovin’: amysaunders08



What is your favorite part of being a chronic illness blogger?
I love that I can share my experiences with my illness as well as other lifestyle things such as fitness and healthy eating! Just knowing that I might help a couple of people with their illness makes me really happy. Also it gives me something else to focus on, something positive if you like, that relates to the illness!


Tell us about your health journey: diagnosis, symptoms, how you take care of yourself, etc.
I got Glandular Fever in March/April 2012 (wow was it that long ago?!) and was ill for a good few months following that. It wasn’t until the August/September 2013 that I started feeling back to myself again. Unfortunately, after a difficult Christmas that year concerning family I slowly started deteriorating back to being ill 3 or 4 times a week. I went to the Doctors who at first told me there was nothing wrong with me, but after a panic attack in an important A Level exam, another GP decided to refer me to a specialist, who then diagnosed me with Post Glandular Fever Chronic Fatigue Syndrome (ME/CFS) in July 2014.


If you could give one piece of advice to those newly diagnosed, what would it be?
Believe in yourself. It’s horrible when others doubt you, especially close family and friends and the doctors but as soon as you start to second guess yourself and start asking questions like ‘Am I just being lazy?’ or ‘Is it just in my head?’ it gets 10 times worse. Believe your body when you wake up being ill and just rest.
What are some of your favorite ways to relax and take care of yourself?
I love practicing Mindfulness – I find it really helps me to take my mind off everything else and really concentrate on that moment. I also love to do exercise. Strangely enough, my love for fitness started nearly a year after my diagnosis and so long as I take things easy and know my limits, I can manage exercising and I find it really helps with the fatigue – although that isn’t always the case!


Tell us something interesting about yourself that has nothing to do with chronic illnesses.
I am a massive Taylor Swift fan and I LOVE Friends (the TV show)! I can’t get enough of it!


As a patient advocate, what do you think our healthcare system could do to become more inclusive of patients?
What I think would be great is if they did more research as individual GP practices into different chronic illnesses because so many GPs don’t even think about illnesses such as ME/CFS etc and if blood tests come back normal, well “you’re just a normal teenager who gets tired and stressed” – yes, a Doctor actually said that to me.




Be sure to follow Amy’s blog or any of her social media channels above!





Chronically Kristin

#SelfCareMvmt 2: Physical Self-Care

If you haven’t checked out the #SELFCAREMVMT yet from Self Care Catalysts, I urge you to visit their website and read my first blog in the series from last week. Self-care is an integral part of the quality of life of a chronic illness patient. Patients are advocating for this movement, and now companies are too!


Last week, we talked about daily little accomplishments and being kind to yourself when living with multiple chronic illnesses. This week I want to get more specific on that and talk about what I do to give myself some physical self-care. Sometimes the idea of physical self-care is tough for patients because that can illicit thoughts of heavy exercise and activity. Yes, it includes activity, but physical self-care is more than that in my eyes. And it also doesn’t have to be an intense workout, which is something so many of us have difficulty doing.



Physical self-care in my life is still about being kind to my body. But it’s also about doing things I might not feel like doing, just because I know they are good for me. Full disclosure people: I hate exercising. I’m a tad lazy, I’ll admit it. But I still know how important activity is. In fact, when it comes to some of my diseases (like spinal arthritis and fibromyalgia), activity is a double-edged sword. I’m in pain so it’s the last thing I feel like doing, however, regular light exercise eases the pain and symptoms of both mentioned conditions. Go figure, right!


For me, there are a couple go-to exercise options that feel like a good workout, yet don’t aggravate my symptoms or pain. Yoga is one of my favorite forms of exercise, but I admit I have gotten out of the routine of going. Another exercise form I like is biking. I’m excited because I just recently got a stationary/recumbent bike for my birthday, so I’ll be pedaling into a routine with that soon. I even placed it in front of my TV so I have no excuse! Whatever works, right?


Exercise is a pretty obvious part of physical self-care, but there are other opportunities as a multiple chronic illnesses patient that really make a difference in my day to day quality of life. Health Storylines is an app from Self Care Catalysts (yes, the same company heading up this #SELFCAREMVMT series) that incorporates a vast number of self-care components. You can track your symptoms, medications, mood, daily notes, gain peer support, add family members and friends, and even send reports to your physician or care team. Health Storylines also has disease-specific apps for a more personalized approach. I’ve used the Ankylosing Spondylitis specific app before, but I’ve switched to using the Health Storylines main app. This is due to some findings on whether or not I actually have Ankylosing Spondylitis, but that’s a topic for a different blog post (coming soon).



Health Storylines is different than many other health tracking apps because it offers so much more in terms of historical data. I love that I can see how my symptoms have changed day to day. And you can even edit the visibility of those symptoms: family, doctor, private, support group. It’s very intuitive and arguably the first of its kind in terms of well-rounded self-care disease management. Download the app for yourself for iPhone here, and Android here.


Other facets of my physical self-care include sleep, drinking enough water, taking medications on time, seeing my doctors, or at least messaging them, regularly, and more. Medication compliance is huge: there is a large debate over the word compliance in the chronic illness community and I definitely understand the wariness of that word. But for lack of a better term, it works. I have been in a position where I was lazy on when I took my medications or if I took them at all. However, you can’t begin to manage a treatment plan and your symptoms if you don’t at least adhere to medication frequency and time. I definitely learned that the hard way.


health storylines key components


Additionally, as I said in my last #SELFCAREMVMT blog post, sleep is critical for me. I will move my schedule around and procrastinate on tasks if it means I will get a proper amount of sleep, i.e, 7-10 hours. I just know that I need it. Drinking enough water helps with my frequent headaches, weight gain, and brain fog. I notice a big difference IMG_4650in my focus and ability to have a short term memory if I’m dehydrated and not really drinking much. I admit I forget at least one day a week, but it’s about baby steps.


The biggest takeaway with all of this is still about being kind to yourself. No one is perfect, and you can’t beat yourself up for that. I’m eating dark chocolate chips as I write this, it is what it is! Push yourself to accomplish what gives you the highest level of physical self-care, but don’t lose it all for one tiny step back. Additionally, self-care is a day by day process for me. I try not to go more than a week in advance in my planning for self-care because I know that life happens, symptoms change, and diseases flare. Que Será Será; whatever will be, will be.




Chronically Kristin

#SelfCareMvmt! (Part 1)

I am so excited to share the beginning of a 6-week series with you all. If you haven’t read my experience with the company, Self Care Catalysts, from when I attended ePharma, go do that here. Self Care Catalysts is one of the first to dedicate energy and time around self-care for patients, outside of patients themselves! In doing so, they are kicking off a movement called: Self Care Mvmt. The Self Care Mvmt will highlight the stories of real patients and shed more light and perspective around what it really means to live with a chronic illness, “to reveal the unseen and invisible aspects of living with a long-term illness, and to celebrate self-care.” If you’re interested in learning more about the Self Care Mvmt, or joining it yourself, head over to their website here. Follow along on social media with the hashtag: #selfcaremvmt.


The first topic in the series is about finding the positive in your day to day life with a chronic illness. The topic, Daily Little Accomplishments, will highlight ordinary, routine activities that can be celebrated as accomplishments because of the challenges that arise when living with chronic conditions. Just as an FYI to any new readers I might have, and for the purposes of this blog series, here are the chronic conditions that I have been dealt with: Ankylosing Spondylitis, Fibromyalgia, Chronic Fatigue Syndrome, Depression, Costochondritis, Anxiety, Rhinitis, and Autoimmune Anemia.

Daily Little Accomplishments: this is a tough topic for me. Not because I don’t see thePoster-1 importance of it, no, in fact I believe it’s of utmost necessity when living with multiple chronic illnesses. Nevertheless, I’m not that great at it. Sometimes I don’t know why I torture myself with the type of lifestyle and schedule that I lead. I think I’m widely successful at being aware of what is the best thing for me, or what is the healthiest (physically, mentally, emotionally) for me. However, I struggle with the follow through. I know exactly what I need to do, but I don’t do it. Or I don’t know how to do it. Needless to say, execution of self-care is not my strong suit.


I’m trying to get better at this and really focus on what my body needs, what it doesn’t need, and when/how to push through if possible. I know that a portion of my symptoms are due to my weight gain and inactivity. I know that if I really focus on getting enough light exercise and losing weight, a small level of the severity of my symptoms would go away/get better. So that’s part of it. The other parts are more due to my perfectionism, stubbornness, and desire to control everything. What’s that saying: the harder you try to hold on to something, the more it slips away? I think that sometimes I want to control everything, not only as a safety net, but also because I feel like I can do it better than anyone else. Well, obviously that isn’t working out well for me considering my stress and anxiety levels.


Okay, enough about how I’m bad at this! There are a few things I’ve gotten much better at in the past year or two. One of these is sleep. Sleep is one of the last things I will compromise. No offense to anyone in my life–but I will cancel just about anything if it’s going to hinder a nap or a good night’s sleep. #SorryNotSorry. I’m someone who does not function well, or at all, without a significant amount of sleep. Most of my conditions cause fatigue, but having Chronic Fatigue Syndrome and Fibromyalgia as two of them really impacts my ability to have any accomplishments throughout the day if I’m running on only a handful of hours of sleep.



If I have my sleep handled for the day/night, then I can more easily bring in other Daily Little Accomplishments. One of the biggest accomplishments to me is being able to hold a (more than) full-time job. I don’t know if I’m grateful that maybe my conditions’ symptoms are less severe than others, or if they are the same and I have built a mental toughness around them, but either way it allows me to still be dedicated to my career. I love my job, and I love my career. It means so much to me to do a good job and make headway with my career development. I’m proud of the experience I have and the depth of skill sets I’ve acquired. That being said, it’s exhausting as well. I know that if I practiced more of the #selfcaremvmt, and less of the control freak/perfectionist persona, I would be even more successful. And healthier too!


Honestly, another Daily Little Accomplishment for me is if I accomplish making a home cooked meal. It’s kind of annoying to cook a full meal for just one person, but I know that when I do that, not only do I save money, but I eat a lot healthier too. Maybe I should say this is more of a Daily Little Goal instead of a Daily Little Accomplishment.


One thing I’ve learned while navigating the journey of chronic illness is that you have to be kinder to yourself. And I do struggle with this, though admittedly I have gotten better in the past year. You have to understand when your body needs a rest and when you might need extra assistance to accomplish something. It’s not about ego or pride, it’s about just being kind to your body. Love yourself a little bit harder by cutting yourself some slack.

I know, I know. Shut up Kristin and take your own advice. 🙂
Duly noted.




Chronically Kristin

(Next up in the #SelfCareMvmt Series, we’re chatting about physical self-care)

Adult Naps Are Completely Underrated

Disclaimer: I have been given this product as part of a product review through the Chronic Illness Bloggers network. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company.

I’m treating this review just a tad differently because I have a few pre-review explanations IMG_4477over the product. First of all, I have a number of different chronic diseases, a couple of which directly influence my sleep. I’m on prescription sleep medication because my body only sleeps for about 30-60 minutes a night on its own. I’ve been on Trazodone for a couple years now. I brought the bottle of FibroSleep to my doctor and she was fine with me taking it with other medications (the label does say you should check with your doctor before taking if you are also taking anti-depressants, which I am) but I had to stop taking the sleep meds if I wanted to try the FibroSleep. So her recommendation was to try it but not for more than 3 days or so. In saying that, I tried FibroSleep for about 4 days. For the rest of this review, my opinions and thoughts on FibroSleep reflect my experiences with over the counter/non-prescription sleep aids.


Okay, moving on after my little disclaimers there. When I received FibroSleep, I knew that there was a chance it would not work as well as my prescription sleep medications, and I was right. However, I have tried many over the counter and holistic sleep aids (warm milk, meditation, Melatonin, ZzzQuil, white noise, diffusing essential oils, sleep tea, etc) and was excited to compare those with how FibroSleep works.


FibroSleep is made by the company, ProHealth, and intended for “even the most challenged” sleepers. Often Fibromyalgia causes poor sleep and/or what we like to call, Painsomnia, in the chronic illness community. The formula in FibroSleep is meant to promote sleep and relaxation. Additionally, some of the other ingredients are good for hormone and nerve balance. Catching the theme here? All symptoms of severe Fibromyalgia.

Don’t mind the kitty photo bomb!


Here is the list of ingredients in case the type is too small in the photo above to read: Magnesium, L-Theanine, GABA (Gamma Aminobutyric Acid), ZMA (Zinc L-Monomethionine Aspartate and Vitamin B6), Lemon Balm, Ginger, 5-HTP, Peppermint, Hops 4:1 Extract, Melatonin, Sedapine, and other ingredients (gelatin, microcrystalline cellulose, magnesium stearate, silicon dioxide, and water). Directions are to take 2 capsules about an hour before going to sleep.


First impression is that the capsules don’t have any significant taste or smell. This is a big plus to me as I often find that natural supplements or vitamins have a strong smell and taste disgusting. I have a hard time taking pills like that, but FibroSleep was relatively neutral.



So how did it work? I found that FibroSleep helped me fall asleep just as well as my sleep medications or as well as Melatonin has in the past. The real test for me personally was going to be if FibroSleep helped me stay asleep all night long. My overactive nerves, my chronic pain, and my fatigue disorders typically wake me up multiple times throughout the night or just keep me awake altogether. I will say that FibroSleep did about as good as it could have done in this area for me.


What I mean by that is that I knew it wouldn’t give me 8-10 hours like my prescribed medication does. However, as I previously mentioned, my review of FibroSleep is in comparison to over the counter options like Melatonin. FibroSleep definitely worked better than Melatonin for me. I would say that I got about 5-6 hours of sleep on FibroSleep. I know at first glance that doesn’t seem like a lot, but for my explained situation, that’s actually really great! I’ve never gotten quite that long of an amount from Melatonin. I did wake up groggy, but I actually always do because of my fatigue disorder. So the positive is that I woke up less groggy than I would from Melatonin, and did not experience that leftover “hangover” type fog that some sleep aids give you.


I would absolutely recommend FibroSleep to those of you that really struggle with getting proper rest. Like I said before, my situation is different and I wouldn’t take it over my prescription sleep medication. However, if I needed to get off of medications at any point (which could become true soon–more on that in another blog post), I would definitely try FibroSleep: 5-6 hours is better than 30-60 minutes!


Be sure to check out the ProHealth website to learn more information and to purchase FibroSleep for yourself! Use this link to order FibroSleep at a 20% discount just for my readers!


In fact, the team at ProHealth is having a giveaway this week! Be sure to enter here for your chance to win 1 of 10 bottles of FibroSleep.




Chronically Kristin

Introducing: Chronically Kristin Guest Blogs!

Hello everyone! I’m excited to announce that I will be introducing many other fantastic individuals in the chronic illness community on a bi-weekly basis here on Chronically Kristin. As much as I love writing to all of you, I also wanted to bring in some other voices, with other diseases, and from all different walks of life. I’m looking forward to sharing all of my fellow chronic illness buddies with you! If you are interested in guest blogging on Chronically Kristin, please email me here: kristin.coppens@gmail.com.


For our very first guest post, I’m excited to introduce to you Emmie Arnold from Illness-to-Wellness! Thanks so much for participating, Emmie! 🙂


61c32b75-2f96-4290-92ca-da7183be8653Name: Emmie Arnold
Age at Diagnosis: symptoms at 14, diagnosis at 20
Diseases/Diagnoses: fibromyalgia, postural orthostatic tachycardia syndrome, irritable bowel syndrome, bipolar disorder 2, anxiety, PTSD
Blog: Illness to Wellness
Twitter: @ill_to_well
Facebook: illnesstowellness


What is your favorite part of being a chronic illness blogger?
Getting to provide community, both to Spoonies and caretakers/friends!
Tell us about your health journey: diagnosis, symptoms, how you take care of yourself, etc.
Read more here: illness-to-wellness.tumblr.com/aboutme
If you could give one piece of advice to those newly diagnosed, what would it be?
Give yourself the grace to rest, the space to grow, and the patience to know that you will learn how to manage better over time!
What are some of your favorite ways to relax and take care of yourself?
Netflix (alone or with friends), reading (book or audio), acupuncture, church/Christian faith life, play music or create art, hike when able.
Tell us something interesting about yourself that has nothing to do with chronic illnesses.
I have perfect pitch and have played classical piano since I was 4!
As a patient advocate, what do you think our healthcare system could do to become more inclusive of patients?
Host more free clinics, create longer appointments, give med school scholarships to underrepresented minority groups in medicine, have patient advocates/social workers in the process of appointments at the doctor’s office.



Be sure to follow Emmie’s blog or any of her social media channels above!





Chronically Kristin

Nimble, A Product Review

This is a sponsored post. I was provided the product in exchange for an honest review, and I have been compensated for my time through the Chronic Illness Bloggers network. All opinions remain my own and I was in no way influenced by Version22 Designs or Chronic Illness Bloggers.



I am such a gadget nerd. When I was asked to review this product, I really didn’t know what to expect, but for some reason I envisioned a larger aIMG_4094.JPGnd more cumbersome tool. I was pleasantly surprised that not only was the tool small and portable, but it’s also rather cute! When I first opened the Nimble package, I thought it looked a little bit like the Snapchat ghost, or a PacMan ghost, or even a little Minion. I love all of those things, so I was destined to love the Nimble, right?!


Right! Now, this product is probably even more useful for those of us chronic illness patients that have hand and extremity mobility issues. However, even those of us who do not have those issues, like myself, this little device is still unbelievably easy to use versus the traditional method of opening packages.


Okay, okay. Tell you what the Nimble is already, right?!



Nimble is a small, flexible cap-like product that fits on the tip of your finger. Due to a special design, Nimble will not cut you like scissors or a knife could. Nevertheless, it will still cut through plastic and paper or cut through a box that you might have delivered to you. Seems simple, right? Well most of the packages on the market now claim to be easy open; however, they should actually be easy to open then, and they’re not. Between hard to peel tape, or plastic that could cut you, packaging is far from simple nowadays.


I was doubting that this tiny device would be able to cut through and open a package for me, but I was 100% wrong! The Nimble cut open my order from Amazon, my new cable box package from Comcast, and also cut cleanly through a piece of paper. I love this because using a knife is dangerous, and using scissors is a struggle. Though my mobility issues are not severe, and others struggle much more than I do, it can still be tough for me to open packages using scissors. The Nimble is so easy, soft, and all it takes it a swipe of my finger down the length of the taped box. Plus, it’s fun! Disclaimer: My friend and I were playing with them afterwards like little puppets on our fingers. Okay, I’m easily amused, and that’s not the point of this tool, but still! Too cute.



I know that all of you will love the Nimble product as much as I do. The company is launching a Kickstarter campaign today and would love our support! Here’s how Kickstarter works: you pledge an amount of money (your choice) and in return you receive the Nimble product. You are only charged if the campaign meets its goal. Once the campaign closes, it can take a little bit for you to receive the product as they are producing them from that point forward.


Visit their campaign on Kickstarter and pledge to support them! (PS. Nimble will only be available through this option, and early birds will get an additional discount on top of the Kickstarter price!)





Chronically Kristin




#HealtheVoices16 Conference

image1.JPGHappy Friday, everyone!


I can’t help but be happy and smiley today; the weather is so beautiful in Chicago today. Wait, why am I in Chicago?


This weekend is the HealtheVoices conference, which is put on by Janssen, is a place for online patient advocates to come together in person and be empowered. I am thrilled to have been chosen as one of the ePatient attendees for the conference. The conference is in its second year and is one of the only conferences that is created exclusively for online advocates ranging from a plethora of different health conditions. Watch their video, below:

044224-151203 HealtheVoices Homepage Video 12.14.15 from Tonic Life Communications on Vimeo.


Some of the sessions I’ll be attending tonight, tomorrow, and Sunday include:


It should be a great weekend, and I look forward to learning more and interacting with some of the other conference attendees (plus reuniting with some of my existing chronic illness buddies).


Follow along with the conference with the hashtag: #HealtheVoices16. If you want to follow my thoughts specifically, check out my Twitter account: @KristinMCoppens.



Chronically Kristin




FYI: Janssen is covering all of my travel expenses and summit entry to HealtheVoices; however, all opinions and thoughts expressed on my blog and my other social media are my own.

One Step Forward, Four Years Back

This blog post is a tad overdue; to be honest, I think I have been apprehensive to talk about getting a second opinion, what that means, potential outcomes, and everything else that has been happening surrounding the appointment.

IMG_3924It almost didn’t feel real that I would get a second opinion because I scheduled the appointment back in October/November. After waiting months, I finally went to UofM this past Tuesday to meet with the Rheumatology Team there. As I explained previously,
the second opinion came about because the status of my health issues and treatments have been relatively poor in the past year. I have had to up my dose of my Remicade infusion, up my dose of anti-depressants, recover from about 6 different illnesses, and add Methotrexate injections. Suffice it to say, after all of this my blood work is still a wreck. My inflammation levels are still high. And most importantly, my quality of life is and has been less than ideal.

We’re a little ways away from having some answers, but it helps me to record these appointments and new perspectives. I will say, I’m extremely pleased with the doctors I met with at UofM. I have never experienced such thoroughness with my health history, Medical_supplies_and_equipment_(15834977505)treatments, scans, symptoms, feelings, opinions, etc. as I did during that appointment. In total, I spent almost 4 hours in the clinic and left feeling at least cautiously optimistic to getting some answers.

The doctors asked tons of questions and ended up running lab work (15 vials of blood!)
and extensive x-rays (about 20 different scans/positions). They also needed a few more records and scans from my doctors here in Grand Rapids, so I have those being sent to them now.

The question for all of this is whether or not my diagnosis of Ankylosing Spondylitis holds true. The UofM doctors are not convinced I don’t have AS, but they are curious about the symptoms and test results that don’t fit that diagnosis. Maybe it’s an additional diagnosis altogether. Some of the things they through out there as potentials were celiac disease, AS, Lupus, Rheumatoid Arthritis, foreign bodies left from surgery, and a few more.Chest

In fact, the Chief of Rheumatology, who I met with along with my new doctor, made a good point. He asked me to tell him how Remicade was going, and I said that it has worked better than any other drug I’ve tried before that. So he says, so you consider yourself well managed disease-wise? And obviously I said, no not at all! His response: so what makes you think Remicade is working for you then. Touché, doc, touché.

I heard from one of the UofM doctors on Friday evening as he called me to discuss a few of the preliminary lab findings. Fortunately, and unfortunately, my x-rays are prestine and look good. This is obviously good news, but it could just mean that my diseases are controlled or under treatment and not showing up on those scans. The blood work is a different story. As he stated, and I suspected, there are a number of things off on my lab work: high levels of inflammation, high levels of uric acid, positive for ANA (antibodies), elevated Sed rate, low red blood cell count, slightly elevated white blood cell count, and a few others.


Phew. Well. I’m not surprised at my lab work being wonky. It certainly explains how I’ve been feeling. But it leaves a lot to be considered. For now, we’re trying a drug that is used to treat Gout. I’m to take one pill a day for a week, then if symptoms improve, call UofM. Otherwise up to two pills a day for another week and then call with how that makes me feel. They’re using this drug as more of a diagnostic tool than a treatment. Seemingly,
this will give them more answers. I pick up the drug tomorrow.

After we try that drug and they review the rest of the records being sent their way, we’ll move forward with other options. If this drug doesn’t work, it was suggested maybe I go off of ALL medications to almost start with a clean slate in my body and see how my symptoms react to that. I won’t lie, that scares me. A lot. I expect a great deal of pain if that happens, and a hard time day to day. I worry how it will impact the other aspects of my life. But I guess I will cross that bridge if and when I come to it.

That is pretty much where we stand for now. Still a lot of unanswered questions, but I feel as though I have some people digging deep to figure out the answers. We shall see.


Chronically Kristin

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