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 and 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!)
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.
It 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, 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.
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.
Disclaimer: This is a sponsored blog post. However, the thoughts and opinions are all my own.
I won’t lie to you, I was pretty apprehensive that I would like this muscle rub from The Fay Farm. I’ve tried countless topical creams and salves/balms, and not one of them has been usable for me. This result is nothing personal to each of the companies, and nothing personal to The Fay Farm for my apprehension. My largest and most severe symptom of my Fibromyalgia is nerve pain and a sort of “Icy Hot” sensation that is widespread over my entire body. Normally, you might hear “Icy Hot” and think that is would provide a sort of pain relief, but because my pain takes on that type of feel, it’s actually like doubling my pain when using some of these rubs or creams.
Needless to say, I was concerned that The Fay Farm would be any different than other brands like Icy Hot, or Tiger’s Balm. There is one different in The Fay Farm, though. Their Warming CBD Muscle Rub has CBD in it. CBD is one of the chemicals in marijuana; however, unlike THC, CBD solely provides pain relief.
Full disclosure: I just received my Medical Marijuana card a few months ago. Personally, I don’t enjoy the “high” feeling. However, nothing I have ever tried and provided the pain relief I’ve gotten from the medicinal products. In fact, I won’t even call it pain relief. It’s more like a pain eraser. 100% gone. I know, I was baffled as well. Additionally, I have severe nausea from the chemotherapy drugs I take, so this helps to counteract the 3-4 out of 7 days a week that I’m experiencing nausea. But luckily, they now know how to separate the two marijuana plant chemicals: THC and CBD. This has contributed to medicinal marijuana bringing relief of many diseases by only targeting the pain relief chemical.
In saying that, I already knew the benefits of CBD for pain relief. This is the ingredient of this rub that sets The Fay Farm apart from the rest. In fact, kudos to you Fay Farm. This warming muscle rub is the first salve, balm, cream, etc. that has actually reduced my pain instead of adding to its severity. The ingredient list does include menthol and peppermint, which, for me, is usually what I have to avoid. However, I think the mixture of a lot of other oils, like rosemary, ginger, clove, etc. and the addition of CBD oil offsets the potency of the menthol. Don’t get me wrong: this issue with menthol and severe pain could just be a particular pain problem with my own Fibromyalgia. This is not across the board as I have talked to other Fibromyalgia sufferers who don’t have this issue and other ones who do.
I’ve had The Fay Farm Warming CBD Muscle Rub for a little over a week now and am very pleased with the results. In fact, I tested putting the rub on one of my wrists and not on the other, and the difference is significant. I have one wrist with intense burning nerve pain, and the other wrist with minimal pain. I still get a little bit of the burning sensation, but I think that is a personal side effect, not anything to do with the product itself. My only disclaimer is that the rub is a tad oily, so I wouldn’t necessary put it on until I was at home and in some comfortable clothes.
Aside from the product itself, I also really connect with the mission and origin story of The Fay Farm. In their own words:
“The Fay Farm is dedicated to creating quality natural body care products. We offer an extensive line of natural shea body butters as well as our highly acclaimed Healing Hemp Salve, which is an excellent natural treatment for Psoriasis, Eczema, Ichthyosis, Contact Dermatitis, itching skin, burn care and bug bites. Our Warming Muscle Rub has been used for the relief of sore muscles, rheumatoid arthritis, cluster headaches, migraines, and as a pre- and post-workout balm. None of our products contain parabens, alcohol, mineral oil, or phthalates. We use our products on ourselves and loved ones and only craft our products with all natural, organically-sourced materials!”
I love that they source so many of the ingredients from the very farm they live! Additionally, they seem to have really done their research on what type of products work for what conditions. For example: their lotion and salves are using for Psoriasis, bug bites, burns, etc. The warming muscle rubs are using for arthritis, cluster headaches, pre- and post- workouts, and more. The products are very well-rounded in effect and purpose.
Here’s the part you’ve probably been waiting for. The deals! Order here: The Fay Farm CBD Retail.
Readers of my blog are eligible to receive 10% their orders. All you have to do is mention my blog in the comments section of your order (i.e: “Referred from Chronically Kristin’s blog).
An additional incentive for readers who are within the United States: receive free shipping by using the code KRISTIN in your order.
Feel free to reach out to me for any questions about the rub or how I’ve used it.
Hi everyone! So as most of you know, I’ve spent the past few weeks blogging for ePharma. The conference was last week and I really enjoyed live-coverage and blogging for the sessions. I have a full recap coming soon, sometime this week. However, here’s why I’m delayed.
I’m healthy person sick! Again. Well, maybe it started out that way, but now with how my immune system, or lack of one, works, it’s transformed into something else.
Every single time I travel I get sick, no exaggeration. And of course, this last time was no different. What started out as a nasty head cold is now something else. Time will tell tomorrow at the Doctor. More than likely have the flu for the third time this year/season. Ugh.
That’s why I haven’t said much since ePharma. Sick as a dog!
So while I attempt to recover from yet another bug, below are all of the links for my ePharma blogs. Enjoy! Be back soon. 🙂
ePharma Summit Blog (Newest to Oldest):
I mentioned back in October, that I was in one of the worst flares I have ever had while I was doing all of that travel and conference experience (#MedX and #TXFM). The flare continued when I got home. And added lovely symptoms of fatigue, body aches, congestion, headaches, etc. I had a feeling I would get sick from all of the travel, but it actually took about a week or so to come to fruition.
Coming home, I begged my rheumatologist to help me. In such a high amount of pain, I knew we had to do something. That familiar twinge of doubt was creeping in once more. “We’re missing something,” I said.
Finally, we ran some blood work, measured my inflammation levels, did an x-ray. Results: wonky blood work, and inflammation levels 4 times as high as they should be (and that was directly after an infusion!).
So I was put on the devil drug, also known as Prednisone, for 2 weeks. Oh joy, let’s just gain weight and bloat up from medication even further. Just what I wanted on top of this. The worst part about that is that a full taper of Prednisone didn’t even help me. Inflammation levels didn’t get better and pain was just as bad. I’ve done a whole blog post on this, but I was then put on chemotherapy: Methotrexate. This drug….oof. It’s a doozy. I take it every Saturday night, wiped out on Sundays, nauseous like crazy on Monday and Tuesdays. Rinse and repeat.
We then ran a full body bone scan with contrast to see if there was something there we were missing and if there has been any more progression or damage from the disease. The good news is the bone scan looks the same as it did three years ago. The bad news is that that doesn’t explain my pain, my increased inflammation levels, my reoccurring infections, my consistent flare ups, etc.
Fast forward to seeing a specialist on spinal surgery and spinal cord stimulation. After basically telling me I wasn’t a strong candidate for the stimulator, she explained that her reasoning why is that she isn’t sure that I have Ankylosing Spondylitis.
SAY WHAT!? But that is what we’ve been treating for the past 3 years. Okay, so I obviously wasn’t convinced, and she didn’t want me to jump the gun and think I was misdiagnosed, but this was something to look into further. The physician suggested I get a Pelvic MRI with contrast of my SI joints which are typically what diagnoses a person with Ankylosing Spondylitis in the first place. She also suggested that I might have something like a central nervous system/widespread pain disorder.
So I had that MRI and received the results about a week ago–the radiologist who read the scan came to this conclusion:
The sacral iliac joints show no erosions, fluid, or periarticular edema or enhancement. There is a 12 mm lesion in the right iliac bone deep to the cortex of the anterior aspect of the sacroiliac joint on the right. This has been present and stable in size since 2012. It shows a mildly increased sclerosis along its medial margin and mild activity on the bone scan. This is very likely a benign lesion such as fibrous dysplasia.
The visualized uterus and adnexa appear normal. There is no visible pelvic mass or free fluid.
No imaging evidence of sacroiliitis.
Huh. So where does that leave us? I’m getting a second opinion from the University of Michigan Adult Rheumatology Division in March. And then I will be visiting the previous physician to talk more about the central pain disorder and other indicators. It’s not a definite that I don’t have Ankylosing Spondylitis–especially since I have most of the symptoms of that disease. However, it’s not clear anymore what IS going on with my health.
It’s frustrating. And confusing. And I feel like I just took MAJOR steps back–like 3 years worth. But I’m trying to just hold tight to waiting until March. No major changes or efforts until then. But seriously, it’s just so hard to be an anomaly. Doctors don’t know what to do with me. Medications either don’t work, or work well but make symptoms insane. I’m not a text book case, I never have been a text book case, but I can’t be the only person on my care team that is willing to think outside the box. Because, hello people, I’m also the only person on my care team without a medical degree. My knowledge only goes so far–granted, it goes far, but I’m not an expert, obviously.
So, we just wait. My depression is really kicking my ass lately (I’m working on it, realizing I need more help than I usually admit)–and I’m just keeping my head above water, lightly treading until we can make some sense of this madness. Que Sera Sera, right?
I just wanted to update with a post on my blog posts for ePharma Summit. You can read my posts, and others, on their blog, here. Follow them on social media with @epharma and #epharma16.
Here are the first two posts, I’ll edit this and add more as they are published.
I Am inVisible: http://epharmasummitblog.iirusa.com/2016/01/i-am-invisible.html
Chronic Addict or Chronic Pain: http://epharmasummitblog.iirusa.com/2016/01/chronic-addict-or-chronic-pain.html
Sometimes the timing on things in life blows my mind. I have recently been feeling pretty down about not having more opportunities or time to do my ePatient advocacy and chronic disease awareness work, especially when it comes to blogging and social media about it. Then, a few days ago, my lovely #MedX friend Kirsten, who blogs at Not Standing Still’s Disease, posted about blogging and attending the ePharma Summit in NYC at the end of February. Not even a full day after I followed the Summit’s Twitter account, they reached out and asked to speak with me on the phone about guest blogging and live coverage during the conference. WHAT?!
I am so unbelievably honored, and humbled, and oh so excited to do this and attend this conference. First of all, I get such a high from live-covering a conference and attending all of the speaker sessions. It is such a whirlwind of ideas, innovation, and collaboration. Secondly, the list of speakers for this Summit is incredible and I am preparing myself to be blown away by what some of the biggest brands in healthcare and social media will have to say about patient engagement and healthcare innovation.
So what is the ePharma Summit? For three days, over 55 different speakers will present ideas about the art of digital strategy. In their own words: “The event where leaders come together to transform strategy and adapt to evolving customer and influencer bases. Seize the opportunities of digital health trends and disruptive innovation.” SO COOL. I could nerd out on this stuff 24/7. Learn more about the Summit, and register, here.
Here’s an example of a few of the speakers: Abel Rajan (Director of Marketing Analytics and Insights for Novartis), Adam Jackson (CEO and Co-Founder of Doctor On Demand), Christoph Trappe (Chief Storyteller for The Authentic Storytelling Project), Edlynne Laryea (Social Media and Digital Center of Excellence for Johnson & Johnson), Jack Barrette (CEO of WegoHealth), Joseph Kim (Senior Advisor of Clinical Innovation for Eli Lilly and Company), Mary Ann Belliveau (Health and Wellness for Twitter), Meredith Guerriero (Director of Facebook Health), Stefani Klaskow (Head of Industry Healthcare for Google), and so many more.
What I’m most excited about with this ePharma Summit is that it’s such a well-rounded conference. Not only are there a huge number of reputable and impressive speakers, but there is also a large networking portion and a number of workshops. The workshops are designed to network with the speakers and other healthcare professionals to go over digital strategy, new innovations, and current and future trends. I’m so excited to learn from the expertise of these leaders, as well as providing my insight as a ePatient advocate and chronic diseases fighter.
If you want to follow along with my blogging of the Summit, I’ll be blogging once per week leading up to the conference, and then I will provide a blog post about each session/workshop that I attend. Follow the ePharma blog here. And listen to the conversation on social media with: #ePharma16 and @ePharma.
I can’t wait to share my experience with you! Feel free to continue following my blog here, or follow me on social media with @kristinmcoppens.
*Disclaimer: I used my phone mic to type out this blog post earlier. It’s an endless stream of brain vomit. I needed to just get a blog post out–and this is what I ended with. Excuse the rambling, incoherent thoughts.
So here’s the thing: I feel like I have so much in my head that I want to blog about and I feel like the lack of doing so is the culmination of a lot of different issues but at the backbone of all of this is such a strong desire to build this blog. Sometimes I ask myself why can’t I make a living traveling around, going to conferences, live tweeting, live blogging, and raising awareness for epatients and patient advocacy. I’m not saying that I’ll never be able to do exactly that, however, there are pros and cons to that as a full-time lifestyle choice.
I go in phases on how much I am able to dedicate to this passion of mine. However, I never truly feel fulfilled unless I am dedicating a solid amount of my time to this advocacy work and to this idea of spreading awareness through social media and digital communications.
All that was a pretty jumbled and incoherent way for me to say that I’m going to continue to try hard to be in this blog space more frequently and to not only spend the time that I do on social media talking about epatient advocacy but also doing more and producing more tangible results of that same advocacy. So yet again I am sorry that it’s been a few weeks since I’ve been in this space talking to you all, but here I am.
My last post talked a lot about struggling with depression and I think in the past month or so there’s been a lot of different reasons why that depression has, for lack of a better phrase, reared its ugly head. I recently read an article from BuzzFeed that was actually a legitimate description of this health issue of depression and anxiety. Typically BuzzFeed is used for funny jokes or memes but this article was so spot on that I could’ve sworn that the author climbed into my head and wrote a list of 16 characteristics about my life. The interesting part about this article is it gives such an accurate description on when you get anxiety over wanting to do something, yet not doing it because the depression is making you not feel like doing it. It’s a vicious cycle.
Switching topics here. All the above is to say, I’ve had the following swirling around in my head so much lately. And I just haven’t written. And I’m trying to fight through that.
I think the popular and almost buzzword in healthcare lately is patient engagement or patient experience. That’s not to say that this is a negative thing, however so often buzzwords don’t transpire into legitimate change. Engaging patients in healthcare is not only the “cool thing to do” but also something that our healthcare system is severely lacking. I always tell people that it’s funny to me to not include patients in the conversation because a healthcare system would cease to exist without those patients. Being someone that works in healthcare I understand the business side of the system and that money has to be made and businesses have to thrive. However, at the end of the day healthcare is a little bit different because you’re dealing with an actual life at hand or you’re dealing with an actual disease at hand and every hand that touches that issue is human. So how do we do this?
Social media and digital communications offer us such a unique opportunity within healthcare. The minute you go to social media with something you want to say, hundreds of thousands of people have seen what you want to say. This can obviously be a negative consequence of social media, however when you use it accurately that power is life-changing.
Not entirely sure what the theme of this blog post is and I apologize LOL. I think what I’m trying to get at is how do we start to approach this problem with not only a scope of work but tangible goals and results. What do we do in order to make patient experience and patient engagement the legitimate first step for a healthcare system, for a doctor, or for any other healthcare professional? I don’t necessarily think there is a black-and-white answer to this. But we have to start somewhere.
As a patient, I wish my doctors read my blog, or followed me on social media. Because I’m so candid, they would get such a hands-on approach to my care. Instead, we deal with having to start from the beginning and tell the same historical story every time. What’s the harm in getting our physicians more engaged with their patients? Is it fear? HIPAA? As someone who works in social media for a major healthcare system, there are ways to do this and to do it well without violating any kind of privacy laws. So is our problem ignorance over these potential solutions?
And here’s a question: can we cause an overwhelming systemic change or shift from individual levels? Can this shift occur when the parties involved are all gunning for different goals?
I think, yes. I don’t have the answers, but I fight everyday to make those invisible voices heard, including my own.
So here’s my goal after a post that is so full of rambling and incoherent thoughts. I wanted to provide new ways to share my voice. Sometimes I think this could include video or audio blog posts or written word or social media or a podcast or a live stream; at the end of the day the medium doesn’t matter as much as the variety in which I get my point across and reach the masses.
That’s what I aim to do in 2016 (and I’ll do a more comprehensive post about my New Year thoughts soon): share this voice, and act as a voice where others don’t have one, in various channels, through various means, to advocate for the patients over the system.
If the system wants to practice what it preaches in being patient-first, or patient-centric, then I suggest they pay attention and play along.
More soon. xo,