Researching Chronic Illness just became A LOT Easier

My mother, Mary Kurek, recently launched an interactive networking magazine, The Introducer Magazine, which spotlights innovators from around the globe. One of these 10-To-Know Game Changers in the October issue was Mei Chen, who is making waves with Health Information Technology. Knowing me and my patient advocacy work, my mother saw the puzzle pieces fitting together and set up an introduction between Mei and myself. You can read more about our meeting on my mom’s blog post titled, Connection from the Introducer Hits Home. You can also check out Mei’s spotlight in the magazine if you want to learn more about her. But I’d like to dive into what she is doing to change the world!

Just so you know, Mei is one of those people constantly ‘fighting the good fight’ by stirring up change for the better! Her passion and genuine interest are driven by personal experience. She understands what it means to need the correct information on a chronic or life threatening illness. So I can see how Mei is going to change the world with Seenso— a search engine specifically designed for all things medical.

About page snippet, Seenso Health search engine

Seenso is like an online library for health information that uses only high quality sources. You can find disease causes, symptoms, treatment options, risks, self-care tips, alternative medicine, support communities, advances in research, clinical trials, etc. What’s more is that this search engine is geared towards patients, especially chronic illness patients who need to be constantly managing their disease. This truly is a step in the right direction for a more patient-centered healthcare system, which is something I feel very passionately about. And that’s why I felt the need to share this with you guys today!

What has me so excited, is that Mei has re-invented how the search engine thinks. Seenso doesn’t just search for words that you type into a box. It doesn’t just show you the most popular results on the internet, nor does it show you advertisements. What it does is reference a knowledge map! So it only pulls up resources that are trusted and supplies you with the most accurate information based off what is stored in the knowledge map for that particular disease, symptom, etc. It’s basically informed searching. Just Wow!

Pause for a second and think—How many hours have you spent searching the internet trying to find the best treatment option? You likely ended up bouncing from website to website and reading through tons of reviews and forums. And you aren’t even sure if you can trust the information that is in front of you, right? Not any more!!! You’ve got access to all the high quality medical info you need with one click or search! Oh my gosh you guys, this is just unbelievable! If you only knew how many hours I have put into researching Crohn’s disease!!! It is mind-boggling! Especially when I was first diagnosed, I was constantly looking up info on my disease in my free time. So many questions came up and I was trying to understand what was happening to my body.

What made it so hard for me and so time-consuming, was discerning the good information from the bad information. I had to sift through all of that myself. Crohn’s disease is extremely complicated because it is so specific to each individual. It isn’t a one size fits all for treatment, diet, coping strategies and for a lot of things. So you really gotta go through and consider all the info out there and decide what might work best for you, and of course discuss it with your doctors. It’s a process and sadly, there is a lot of bad information out there. What a lot of patients don’t understand is that there’s a lot of misinformation out there. That’s why I’m beyond excited that Seenso just cuts out all the “junk results”.

Mei and I talked about how truly important it is to get the right information when you need it. Trusting the wrong information can be detrimental in more ways than one. Say you are diagnosed with cancer and you only have a certain window where the disease is treatable… you need to act fast. Mei recalled the technology leader, Steve Jobs, who unfortunately died of a rare pancreatic cancer. Initially he chose to use only alternative methods of treatment, instead of scientifically proven treatments that may have actually saved his life. By the time he agreed to surgery, his cancer had already spread, making matters more dire. It’s sobering because this is a total reality in this technology day and age. Misinformation lurks around every corner of the web. Especially since current search engines aren’t optimized to display correct information. So, it’s clear the need for reliable medical information online is imperative.

Seenso is going to change the tides of health education in a big way!

Guys this is about us… the patient. I don’t know of ANY search engine out there that caters specifically to our needs. Seenso is for made for us. A search engine looking out for the best interest of the patient! I mean, seriously, how exciting is that!! It’s brilliant and I don’t know why no one has ever thought of this before!

To know that someone has taken all the guess-work out of researching your chronic illness is just a weight lifted! Whether you are religious or not, you may find yourself saying “Hallelujah” after checking this baby out! Ha ha ha! It is going to save so many patients so much time! My heart is so happy to know that newly diagnosed patients will have this resource available to them from the get-go!

Let’s compare–Here is an example, of both a Google search and a Seenso search on the same topic.

Google Screen Shot 2017-11-06
Screenshot of me searching Google for ‘Crohn’s disease treatment’.

When you type in “Crohn’s disease treatment” on google, you get a lot of mixed results. Actually you will notice the first 4 things that popped up for me were ADs. No Surprise there! If you look at the blue box to the right, you will notice a simple breakdown of Crohn’s disease. I can already point out a few things that are wrong or taken out of context, or represent only a small percentage of the Crohn’s disease population. So not an accurate picture at all. And the first real search result was from WebMD. Ha ha ha, No I’m sorry. Not impressed. And this was before I even scrolled down!

Seenso Screen Shot 2017-11-06
Screenshot of me searching Seenso for ‘Crohn’s Disease Treatment’.

Now when I searched Seenso for the exact same thing– I got a very intelligent mix of search results, and not one ad! All were from trusted sources, and some of which I’d never actually seen before, because google never even displayed them to me! {Makes me wonder what else I have been missing out on! Not cool Google!!} You can also see there on the left side of my screenshot– all the information they have available for Crohn’s disease! Just shut the front door on this!! That is awesome!!! And it’s like this for every disease that you search! Not just Crohn’s disease!!! Look at the top of my screenshot, you can just click on “Diseases” and access a whole list of them! I mean… I’m in awe!

Take another look at the multitude of categories on the left side of my seenso search. Now look at the blue box on the google search again. Google doesn’t even touch the tip of the iceberg.

Again, I keep thinking of all the hours I have spent searching the web for that exact information and it’s all right there! It’s been made so simple. Everything all laid out for you… in one place! I love it!

Seenso is still “in the works”, there will be a lot of awesome updates coming in the future. So, now is the time for us chronic illness patients to let our voices be heard! Mei really wants to shape this platform to best serve our needs and she can’t do that without our feedback! So if you are a chronic illness patient or a caregiver for someone with chronic illness, please send your feedback her way! Scoot on over to seenso.com and give it a try! Search until your heart’s content and then pretty please shoot an email to info@cogilex.com. What did you like about the Seenso search engine? What improvements would you like to see? Your feedback is crucial to the evolution of Seenso and will help so many patients find the correct information about their disease!

I’m excited to see where this cutting-edge search engine technology takes health education in the future. And Mei, thank you from the bottom of my heart for working so passionately on this project for so many years! Your efforts will undoubtedly change the tides for so many to come!

I also welcome any comments here on this blog too! I hope y’all find this resource helpful!

All the Small Things

Recently I had a consultation with a nutritionist, which was very helpful. However, what really stuck with me about that visit and has me writing today, is something completely unrelated to diet. While chatting, the lady made a comment in good humor, but it got me thinking… it may be hard for the average person to grasp that there are many annoyances that tend to sidecar a chronic illness that require our attention as well. It’s important for us to respect those smaller issues so our overarching illness doesn’t worsen.

  • So, What Had Happened Was…

The nutritionist and I were talking about things people do to be healthy, what we avoid in our diet and the products we use to be healthier. I mentioned that I’ve been trying to cut out sugar, and that I’ve noticed my skin clearing up! I have less breakouts. She agreed that sugar can be a culprit in skin issues. On that theme of skin, I also told her how I’d changed my deodorant to an all natural one so I didn’t have to worry about toxic chemicals clogging my pores and possibly giving me breast cancer or Alzheimers. That’s when she laughed and said, “Now that’s going a little too far! Before you know it, you’ll quit shaving your legs.” I guess she thought I was going full on hippie?!? Hahaha!

No matter how silly it may seem to her, I can only handle so many life threatening diseases! Both Alzheimer’s and Breast cancer have been present in my family, so I have legitimate concerns about them. Why chance it?!? It is very literally one less thing for me to worry about by switching my underarm product. It brings me peace of mind which is good enough for me. I don’t want to worry about an increasing risk of cancer or any other disease, when I’m already taking a high risk drug (which increases my risk for certain cancers). Plus, I already have a lifelong illness. I don’t need another one. No thank you, I’ll pass!

  • Why did her comment stick with me?

I realized that she might not understand the genuine high risks that I am facing every day I wake up. She is healthy, so her perspective is obviously coming from a normal level of concern for risk factors. It seems like overkill to her, to make all these little changes. For a generally healthy person, these subtle differences might not seem to make a difference or they might not seem worth it in the long run. Whereas my perspective is more along the lines of survival. The way I see it, I have to make all these little changes to decrease legitimate risks since I am already facing a higher risk due to the medication I am on, and the nature of my disease. I’m more susceptible to health complications.

Now at the beginning of this article I mentioned… “it may be hard for the average person to grasp that there are many annoyances that tend to sidecar a chronic illness that require our attention as well”

  • What do I mean when I say “annoyances that tend to sidecar a chronic illness”?

These annoyances are everyday little nuisances that tag along with the lifelong illness. They aren’t usually issues caused directly by the disease itself, but are a trickle-down effect from treatment, side effects or just the stress of managing illness. An average person could get away with ignoring such events in their life and be okay. Why? Simply because these little occurrences don’t effect a healthy person the same way they do someone with chronic illness. They become a bigger deal.

  • Examples–

Cutting yourself shaving, catching a cold, losing a few hours of sleep, eating a balanced diet, knowing bathroom locations, alcohol intake, skin breakouts or dry skin…the list goes on but you get the idea. For the average person these things usually go down pretty easily or without much of a thought.

That’s not the case for me unfortunately, and that is my point. It is a completely different experience when you are living with Crohn’s disease and take a medication that compromises your entire immune system.

I tend to bleed super easy because of the effect my Crohn’s medication has on my blood. Shaving my legs becomes a real chore, because the slightest knick has me bleeding all over the place. It takes an exorbitant amount of time for the blood to clot. I’m talking anywhere from 20 mins to a little over an hour. Such a small event in my life, takes all my focus to get it under control. I can’t get a hangnail, a zit, or scratch on my arm without needing a bandaid or three. It usually takes three. A dry nose in allergy season has me waking up with blood crusted nostrils each morning. {Sorry, I know TMI.} But it’s my reality each day.

I have to be EXTRA careful about being around sick people or really young kids, because I catch things very easily. Again because of the medication I’m on. It actually suppresses my entire immune system and lowers my white blood count, making me more prone to infections. What makes matters worse is I live in a severe allergy region and I have a history of asthma and sinus problems! You can imagine why I try every preventative measure I can just to keep added sickness away. I’ve actually got an upper respiratory infection right now, because my hubby went away to a convention and came back sick. A day or two later, I was also sick. It is usually guaranteed that I’ll get sick if the hubby does, thank you immune system! Managing “normal people sickness” on top of chronic illness is doubly taxing on your body so it’s extremely draining. It’s added stress on the system that can be a breeding ground for worsening disease and mental health– no one wants that! I don’t want it! So needless to say close monitoring is a good idea, so the Crohn’s disease doesn’t get out of hand.

Sleep is a huge factor in my health. Any change at all in my sleep habits, very drastically effects my health overall. That can mean missing as little as 1 hour of sleep. If I don’t get the sleep I need, then I will be much more prone to getting sick, or my allergies will take over.The fatigue I struggle with feels insurmountable, and that is usually followed by depression. My body starts to hurt all over and my eye sockets begin to ache severely. I get dark circles under my eyes. Honestly, I start to look like death. Just being real y’all. Essentially, missing out on sleep starts a snowball of bad things pretty quickly.

My diet absolutely has to be restricted because if I eat too much of the wrong thing, I could cause a bowel obstruction and end up in the hospital; worse case scenario getting surgery to remove part of my intestine. A total reality. So diet is always being considered. Depending on medication, I also can’t drink alcohol or drive. Alcohol is limited to only about 2 or 3 beers with proper food intake. Otherwise my gastro system gets put through the ringer for an entire day or two. I basically live in the bathroom. Crohnies you know what I’m talking about! Lot of time spent praying to the porcelain gods! Some would call it a “come to Jesus” situation, ha ha ha!

Bathrooms have to always be near by, no question about it! That is always on the mind, end of story!

Skin issues are so much harder to manage as well. This is an invisible illness. You don’t see it on the outside but there is war going on inside of the body constantly. Since my body is working overtime on the inside it has little time left for the surface. At least that is my experience. Breakouts, rashes, dry skin, cuts, scrapes, bruises. They all take so much longer to heal. In the case of zits/breakouts they just keep popping up no matter what you seem to do. I’ve actually consulted dermatologists to help me get those skin issues in check. A normal acne wash and some moisturizer were not cutting it. No matter how much lotion I would put on, my skin was still dry and flaky! There is just no easy fix.

And yeah these are all small, little concerns but add them up. The time each nuisance takes out of my day begins to get ridiculous. The time I have to spend changing out bandaids because of a hangnail is laughable! Walking around the house with a tissue stuck up my nose, re-applying lotion every time I wash my hands, carefully considering each meal, and so on. And these are just a few things I’ve mentioned, it’s not even close to all of them, by any means.

If you are a generally healthy person, sit down and think for a moment. What if all the little parts of your life became so much harder to accomplish. Those things you don’t even think about–Brushing your teeth, walking from your bed to the couch, opening a cereal box, checking the mailbox, pouring a drink… think to yourself “what if all these little moments in my life were magnified and took three times as long to accomplish”. Then you might have an idea of what I’m talking about. An idea of how the nuisances are seen to someone with chronic illness.

It becomes a logistical nightmare, dealing with the trickle-down bits and pieces while waging war on the disease itself! But we do it.

What are some little buggers that you deal with on top of your chronic illness?

If you don’t have a chronic illness and are reading this today, did you learn something new? 

Social Media Opens an Old Wound

 

Social media is a gift and a curse. It can be a lovely way to keep up with friends and family that are far away. However, in regards to chronic illness, social media can be more of a curse in some cases. Admittedly for me, seeing all my friends post about their perfectly normal lives, opens up an old wound from time to time. It brings up feelings of jealousy, anger, inadequacy, resentment and disappointment. I don’t like that, because that isn’t who I am. But this disease makes me want my old life back. My life drastically changed when I was diagnosed, but everyone else’s remained the same. I thought I’d accepted my “new normal” and then those old familiar feelings come flooding back.

You only see what people want you to see on Facebook or Instagram. It’s a ‘highlight reel’ that perpetuates the myth of perfection. You don’t get the whole, real picture. Just the good parts. My social feeds are cluttered with enhanced selfies, picturesque weddings, smiling babies, overly staged family photos & wondrous vacations across the globe. It all seems very amazing but very skewed to one side of life. There is a lot being completely omitted. You don’t see the debt your friends are in to make that once-in-a-lifetime vacation a reality. You don’t see the 3 hours of bickering in the car with the kids screaming in the back seat. And you don’t see the hour it took your friend to decide which Instagram filter to use for that perfect selfie! Now before I go any further, I want to be clear I am not judging anyone for simply sharing their lives on social media. We are all on social media, we all do our thing differently. To each their own. What I am bringing up is that we should be real with each other!! Share the realness, not the illusion of perfection! You get to know people through being genuine. Why do we all feel like we have to hide the fact that we are human?

No one’s life is perfect.

No matter what you see on social media…There is no such thing as “perfect”. We are humans. By nature we are imperfect. Add chronic illness into the mix, especially Crohn’s disease… the word ‘perfect’ goes flying miles out the window in a matter of seconds.  Life is far from being normal, let alone anything resembling perfect. In fact, we may begin referring to it as the P word from now on in my house. Ha ha ha!

The grass is always greener on the others side, until you get there and realize it was just an Instagram filter the whole time!

In all seriousness, it is a little concerning. Just as we see overly thin models in the magazines and then begin to worry about our daughters getting a body complex– shouldn’t we also be worried about seeing only the ideal parts of life on social media? For fear of getting a “life complex”. Seeing is believing. We only get to see others living the amazing parts of their lives and think that is how we are supposed to be living our lives. All good, no bad or boring. And if we aren’t living like that, we are unhappy! The grass is always greener on the other side as they say. This especially puts undue pressure on those burdened by chronic illness, because we cannot live the life of a healthy person, no matter how badly we want to. And that is all we see on social media, the lives of healthy people. The world as a whole is healthy.

It’s a constant reminder of the very thing we no longer have…. a healthy, normal life.

I may think I’m doing well and finally starting to thrive after a flare, then I see a friend post pictures of yet another flawless family get away, or photos from the wedding of the century that I was unable to attend due to sickness. I start to second guess my decisions and my life. Should I have forced myself to go? Should I have put my health to the back burner for just one night? Am I truly living or am I just surviving? I see the endless posts on social media about these special times in their lives and think, “Is this how my life is supposed to be? Full of adventures, events and non-stop fun from one week to the next?” No, that is unreasonable! Even normal people have boring days! Ha ha ha! Before I saw my social feed, I was fine and truly thought I was doing well! So, what happened?

We too often compare our lives to those of healthy people.

You cannot compare the two lifestyles– healthy vs. chronic illness. Our lives are NOT the same. They just aren’t. We walk two completely different paths. A healthy lifestyle tends to be centered around work and making money. When you aren’t working you are spending time doing fun things like hanging out with friends and going out to eat. Grabbing drinks with the girls and dancing. Weddings, birthday parties, anniversaries, baby showers, picnics, and pumpkin patch-ing?! Yes and visiting pumpkin patches. As a chronic patient, I have to focus what little energy I have on taking care of myself first and foremost. I am unable to work my old job because of the physical & mental limits of my disease. Most days its hard to get out of bed, let alone get dressed! It requires a lot of energy to take a shower (makeup is usually out of the question after that). Making plans is really difficult because it’s more likely that I’ll have to cancel rather than attend. And more times than not the average person does not understand. People just stop inviting you all together when the figure out that you just cancel all the time.

It’s hard. Chronic Illness forces you to do things you don’t want, because your health takes precedence.  Real talk– that usually includes missing out on many things you would enjoy. Then you go online and unfortunately see all those things you are missing out on. It’s a bummer but….

We have to be happy with what we’ve got!

I’ve decided it’s unfair to myself to dwell on what my life ‘should’ or ‘could’ be like anymore. It’s unreasonable. This disease isn’t going anywhere, life will not be the same. I absolutely have to accept that or this will be a perpetual cycle! Instead I’m going to focus on what I have, what truly makes me happy and how I can continue to realize my best quality of life.

So–Forget about the should’s, could’s and would’s. Ignore what others are doing that you know very well you can’t or don’t even want to do. Forget about what you feel society expects of you. The truth is they aren’t you and they aren’t going through your journey. Just make the most of what you have. Otherwise you will always be in a state of discontent.

Chronic Illness doesn't mean you have to stop enjoying life. It just means you have to adjust your expectations of what enjoyment is to you.

It’s true that I am limited by my Crohn’s disease. But I am happier now than I ever was before because I have a higher level of appreciation for things. I might not be able to go hiking through the mountains or travel abroad in Europe for months but I’m happy. I have adjusted my expectations of what it means to enjoy life, to fit the reality of my Crohn’s Disease lifestyle. I am content just sitting on my front porch looking at the trees while squirrels run around. Heck, I enjoy the simple fact that I even have a front porch. Watching my pups play fills my heart with joy like nothing else. I have a loving supportive husband that understands my struggles and I do not take that for granted. I’m beyond grateful! Having just one day without pain, is the best feeling in the world! The closest to “normal” I get! The good days are magnified!!

Bottom line– Social media is not a good representation of what life is really like. It is a showcase. So we should focus on our lives, without any comparison, and make the most of it!

Let’s start appreciating what is right in front of us in our own homes. Instead of reaching or always looking to how the “normal” world does things. Get creative and carve out your own path despite your circumstances.

And get off of Facebook if you need to! Ha ha ha!

I’d love for you to comment with one thing that you appreciate today, big or small!

 

Review: Quell Pain Relief

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 have been struggling with chronic pain for about a year & half now. It started a few months after I was diagnosed with Crohn’s disease. I thought it could be related, possible extra-intestinal manifestation, or perhaps just the stress of dealing with a chronic illness. No signs of arthritis or other inflammation have been found. I have seen my PCP, my gastroenterologist, a rheumatologist, a physical therapist. So far nothing has fixed the problem. I don’t yet know the source of the pain but that it could possibly be muscular skeletal. My next option is to see a spine specialist, which is on the books for the future. But for now, I needed some kind of relief! As soon as I heard about Quell, I thought PERFECT!! Stick it to my leg and go about my day! No side effects!! Yes Ma’am! Sign me up!!

Most importantly it isn’t another medication to add into my regimen. 

I specifically mentioned to my doctors that I didn’t want to have another medication to take daily. Especially not a pain medication. So I was extremely curious to try out Quell since I knew it would provide similar relief without having to take another pill.

What is Quell?

Quell is simply a device that you attach to your calf, wearing it like an exercise band. It is a small lightweight device that snaps onto an electrode strip. The device stimulates nerves that send neural pulses to the brain, blocking pain signals. So in effect it starts up a natural body response to lower pain levels, which can obviously be helpful for people that suffer from chronic pain.


How often do I use it?

I started using Quell on Sept. 9th 2017. I wear the device for at least 4 sessions a day {they suggest at least 3 sessions a day for the first two weeks for best results}. You can also wear it during your sleep, but I only do that about 2 or 3 times a week. My pain does not effect me during sleep, so I figured wearing the device when I have the pain during the day was the best course of action.

 

When did I notice results?

Monday Sept.18th was the first day I remember waking up NOT in pain! That’s only a week from when I started using Quell. I was surprised to see results that fast, because they say it can actually take a few weeks to really notice optimal results. So keep that in mind if you decide to try out Quell. It isn’t something that happens right away for everyone. It varies per person. That morning I realized I hadn’t woken up stiff and that I could just get right out of bed and walk normally. I didn’t need to stretch immediately, my feet weren’t in pain, nor did I need to use my heating pad. I even noticed that after a few more days of using Quell that I had more energy during the daytime! Which for me, SAYS A LOT!!! I suffer from really bad fatigue every single day of my life. So for me to feel like I have ANY energy at all is amazing.

More specifics and features

~ It’s Low Maintenance! All you have to do is strap it onto your leg and go about your day as normal. It can hide underneath your pant leg. Only real concerns are to take it off when you are driving and don’t get soaking wet while wearing it, for pretty obvious safety reasons.

~ The battery on the Quell device lasts incredibly long! I’ve only needed to charge it 2 times in one month.

~ The Quell app is super user friendly! You can control the device through an app on your phone or via the button on the side of the Quell device itself. However, I prefer to disable the button on the device and just use my app. As you see in the pictures below, the app tells you when you are in a therapy session, exactly when the next one will start, how much battery is left, when to replace your electrode, if your device has been disconnected, etc. You can customize settings, calibrate the intensity level of therapy sessions and track your pain levels. There are a lot of great features to explore on the app.

~ I would go so far to say that Quell is ‘idiot-proof’. I love the battery indicator on the app!! It tells you exactly how many more sessions your device will last before you need to recharge it. So there is no guessing! I wish more devices did this! And charging only takes about 2 or 3 hours. More importantly, Quell suggests that you air out your skin after about 4 hours of use. I was honestly worried that I would forget to do this when I went about my day. I don’t do well with distractions. However, the app also reminds you exactly when you need to take a break and air out your skin! I love that it notifies you! They have thought of everything and simplified it for the user!

~ However, my MOST FAVORITE feature on the app for Quell is that it will notify you when the weather will effect your pain! And what’s more is that it is right!!! Every time it has notified me about the weather, I have experienced an increase in pain. {In the settings you can tell it what type of weather effects your pain. I have noticed that rain storms really mess with me, so that is what I told it to track.} I LOVE this feature so much. I can’t tell you how nice it is to have a little heads up that it could be a rough day. Having that heads up can allow you time to take some headache meds or what-not to keep symptoms to a minimum.

What does a Quell therapy session feel like?

It feels like a vibrating and tingling sensation all at once on your leg. I would compare it to when your foot or leg falls asleep and you get that pins and needles feeling. It doesn’t hurt, nor is it uncomfortable. In most cases I can actually forget that I am even wearing the device. Sometimes after shaving it does itch or sting a little. I called Quell customer support and they said that sometimes this can happen, you can just use a protectant if it worries you. I never had any problems with irritation or redness, nothing like that. Just a slight stingy itchy feeling. Once I grabbed 3M Cavilon, a no-sting barrier film, I had no issues with that at all. {I just want to mention that I am known to have skin issues. So this is likely not the norm. I see a dermatologist about sensitive & dry skin.}

What would I change about it?

~The main thing that I wish were different about Quell is the band! The band is what you slip the device into and then strap around your leg. It stretches out really fast. On Day 2, the band was already stretched out and needed to be tightened. This can be fixed a little by throwing it in the dryer for about 30 mins. But it still stretches out. You have to keep drying it.  I don’t know that there is much to be done about that, since it is basically an elastic sport band. The bad thing about having it stretch out so easily is that you don’t feel the device is going to stay put. As you can see in the picture above the device buttons through the band onto the electrode, but as the band stretches it can weigh down on that connection and become much easier to disconnect accidentally. A small annoyance worth putting up with once you see results from this device, but an annoyance all the same.

~ Just a warning: If you are clumsy or klutzy like me, you will have issues with accidental disconnections! I run into everything. Always have since I was a kid! I knock into the end of the bed, the side of the coffee table, the living room chair, etc. The list goes on. And somehow it is always my calf that is getting hit. I have had countless accidental run ins and then boom! The device falls flat to the floor with the band and the electrode still stuck to my leg! Ha ha ha! So while this may be more-so about my clumsy nature that needs to change, it could have a little to do with a better connection being needed too. Perhaps a button with a slightly stronger connection to the electrode, so it stays put better. Either way, I felt it worth mentioning for the other clumsies out there!

~ When I first put Quell on my leg, I didn’t know how to cross my legs. Ha ha ha, I know it sounds silly! I remember thinking how is this going to work out. I was afraid that I was going to accidentally hit the button on the device and change the intensity level of the therapy. Because the button is on the outside of your leg. The same goes for when I first tried to sleep with the device on my leg. I’m a side sleeper, enough said! Once I figured out that I could actually disable that button through the app, I felt much more comfortable crossing my legs, sitting indian style and sleeping with the Quell on. This is the main reason I prefer to just use the app to control Quell as opposed to the devices physical button.

 

IMG_0042

My Final Thoughts

On a scale of 1 to 10, Quell takes my normal pain level of a 6 or 7 down to a manageable 4 most days. I know this because I actually tracked my pain levels every day on the Quell app when using it and saw a consistent lowering on the pain scale. In my second week of usage my numbers stabilized. When I stopped using Quell for a couple days, the pain levels would increase again. So I would strongly recommend using it consistently for that reason! Don’t quit just because you are feeling well. You have to remember that it’s blocking pain signals, so the pain is likely still there, you just aren’t feeling it as much.

Lowering my pain level to a 4 is enough to let me carry on with my day and actually forget that I’m in pain from time to time! I can chase after my new puppy that loves getting into any and every thing. I’ve been noticed a slow increase in my physical activity too. I can actually ENJOY walking the dogs and for a longer period of time! When I sit and stand it is not as painful. Guys I can do more things that I enjoy!! I mean isn’t that what we are all looking for?

I’ve been doing physical therapy, yoga, taking supplements, watching my diet– adding this into the mix is perfect! Yes, to keep getting the results you have to keep wearing it, which of course means replacing the electrodes about every month. It’s worth it though, if you get a little bit more of your life back, a little bit more of your enjoyment! Which has certainly been the case for me. I think it is a great addition to your tool kit for chronic pain. It isn’t a magic “cure all” but you will find some relief with it. Any little bit helps when you are living with pain on a daily basis that interferes with your life. I know I will keep this in my bag of tricks for pain and continue to use it in combination with all the other things that I’m doing to get the most enjoyment out of my life.

Many thanks to the Chronic Illness Bloggers Network for allowing me the opportunity to try out this product! 

As always I wish you the best quality of life! If you are thinking of trying out Quell or want more details, you can of course visit the Quell website. If you are already a user, please let me know your thoughts & experiences!

Tips for Traveling with IBD

Tips for Traveling with Inflammatory Bowel Disease for women.

Inflammatory Bowel Disease (IBD) is something that goes with you everywhere.
And that includes… vacation.

Most people go on vacation to escape the stress of reality and just relax. Or just to get a break from working. A time for fun! Unfortunately, we don’t get to take a break from a chronic illness. It’s pretty much a package deal. Crohn’s disease comes with you wherever you go. It’s not going to stop being an incurable disease just because you decided you need to get away. No, that is just not how it works unfortunately.
We will still have to manage all the normal aspects of our illness no matter where we are, at home or a different location. In fact it may actually require more energy or be more “work” for you than usual to make sure you have everything you need while you are away. As this is usually the case for me.

Since having Crohn’s disease, I just think of vacationing as simply changing locations. Same problems, different day, different location.

Changes in Latitudes, Changes in attitudes. Nothing remains quite the same.

Now, does that mean we can’t enjoy ourselves? No. We absolutely can enjoy a lovely vacation away from home. We can do all the fun stuff like swimming with dolphins, walking around a park we’ve never been to before or whatever else suits your fancy. We just also have to watch out for our health and manage our symptoms while we are on that vacation. Nothing worse than ignoring the body and ending up in an unfamiliar hospital while traveling. Scary thought indeed! Especially for us IBDers. 

So I have put together a few tips for you. These are things that I do or have learned that I need to do while I am traveling. Sometimes we learn the hard way ladies and gentleman! So why not learn from my mistakes, right! Ha ha ha! So here are a few tips for getting the most out of your vacation while still taking care of yourself! Hope you find them helpful!

Don’t abandon your normal routines!
I was only diagnosed in the summer of 2015. So right now I’m still struggling with that old mindset of vacationing. Eating different foods, sleeping less, drinking, visiting with a lot of people, doing a lot of walking and other fun activities I wouldn’t normally do. And that is okay….to a certain extent.
Sleeping Habits
It’s incredibly important that your body gets the restful sleep that it needs, especially on vacation. Keep your sleep routines up so that you can be awake for all the other fun things that you want to do. Every single time that I get off my routine, I pay for it for a week afterwards. My fatigue and other symptoms quickly deteriorate. So I just don’t push that line anymore.
Eating Habits
Same goes for eating habits too. If you know that you need more protein in the morning to get going, don’t un-form that habit. Stick to what your body knows it can handle for the most part, and you’ll be thankful. I always bring a small snack bag of “safe foods” with me on trips, in case I don’t find something I can eat.
Treatment
And it goes without saying that you should still keep up your medication schedule as well. If you are like me, certain meds need to be taken at certain times of the day, with or without food, and all that! So don’t forget to do the important things that keep your body running. {Sticking to routines on vacation can help with feelings of anxiety as well, since you know that you aren’t straying too far from your norm!}

Bring Emergency Medications (As Needed Medications)
I’m of the school of thought…”if it can happen, it’s going to happen to me”. Don’t chance it!! Just bring those medications that you have for emergency or as needed situations. For instance, I have a med for nausea and one for pain if I need relief badly. I also have an emergency inhaler when my allergies get really bad. I always bring these with me, because the ONE time I needed them and didn’t have them was enough for me!

Poo Pouri for Shared Bathrooms
If you are a little shy about sharing a bathroom with others on your vacation, then definitely bring along something like Poopouri or Fresh Drop with you. All you have to do is put a drop or two in the toilet bowl before you go, and there is no smell! It’s like magic! But honestly, everybody poops!

Pack Flushable wipes and Extra Undies
Getting a little real here, but the truth is you want to be prepared! I always pack extras just in case we stay a little longer than planned. Or in case our worst fears become a reality. Ha ha ha, yeah I know ewww! But we are talking about IBD here! Either way it doesn’t hurt to pack extra underwear. Depending on your symptoms, and without going into too much detail– flushable wipes can be a helpful tool to have on hand. A little extra freshness feeling for your bum! You can get small packs of “butt wipes” for traveling, and just throw them in your suitcase.

Bring your heating pad
Like many of you, I suffer from back & joint pain. Before leaving for vacation I always try to assess if I will need the heating pad on the trip. My favorite one is a little bulky and requires an outlet–so I look into where I’ll be staying and if I’ll be spending enough time in the room to warrant bringing it. Worth considering if you spend a lot of time on the heating pad and it brings you some comfort.

Go easy on alcoholic beverages
For the very obvious reasons you want to avoid over-drinking on vacation.
1– it can upset your stomach
2– it may interact with your medications
However, just as important, it can lead to poor food choices. I don’t think very many people consider this. If you drink enough to feel good, then you will likely want to keep drinking or get some food in your system asap so that it can counteract the alcohol. When you need to get food in you ASAP, then you just eat whatever is readily available. Or you may be more likely to do so! This has been the case for me in the past. I will have a few beers, feel a buzz and then realize I need some food to soak up the alcohol. Then I make a poor food choice and pay for it later. It’s never the beer that messes me up, its the buffalo wings or the Mexican food that I thought was a good idea at the time!!

Have your doctor’s phone numbers with you
Save all your doctor’s phone numbers into your cell phone and print up a list of the numbers to go in your bag too. The first vacation I went on after my diagnosis, I was dealing with erythema nodosum (a skin condition and extra-intestinal manifestation of Crohn’s disease). It was spreading very quickly on my limbs. Luckily I had my doctor’s direct phone number with me and we promptly adjusted my steroid regimen to take care of the symptoms and FAST. I don’t want to think about what would’ve happened if I couldn’t reach my own doctor.

Pack a couple extra days worth of medication
On numerous occasions I have dropped my pill container and it has busted open, leaving me scrambling for all my pills for the day! I would definitely consider myself a klutz but hey it could happen to anyone! If I’m going on vacation for a week, I bring an extra 2 or 3 days worth of medication for this reason alone! However it’s a good idea for occasions when you lose a pill or decide to extend your stay, or god forbid you get stuck and can’t catch a flight! Better to be safe than sorry!

Always schedule in some down time!
To me this is the most important tip I can share with you guys. Always make sure you have time to relax and literally do nothing. Vacation usually has you doing more activities than normal, so just pace yourself and rest when needed. That way you are able to do the things that you really want to! I struggle with fatigue every day of my life, so I’m constantly making decisions based off if I have enough energy to do things. Vacation is honestly the same way. I know that if I spend a little more energy one day, I will pay for it and have less energy the next day. It all comes back to the spoons. Even visiting with family can deplete your energy reserves if you are more of an introvert like me. Just listening and taking everything in can be draining. So be aware of your energy levels and just plan accordingly!

Chronic Illness doesn't mean you have to stop enjoying life. It just means you have to adjust your expectations of enjoyment.

 

Guest Interview with Christina Sgarlata

I ask my friend Christina Sgarlata a few questions about living with chronic illness. She has such great insights especially being in the medical field. Her open mind and well-rounded knowledge are so refreshing! I know that this interview will be helpful to so many readers! Many thanks Christina!
 
A nurse & fellow friend shares her journey with chronic illness. Insights on how to cope, educating yourself, and making your health a priority.
Christina Sgarlata, BSN, RN, RYT is a friend and a nurse in the Cardio-Thoracic-Vascular ICU with LRS HealthCare, with previous experience in Gastroenterology from St. Luke’s Gastroenterology Specialists. She is a Classical Yoga Teacher and is studying Comprehensive Yoga Therapy at Yoga Life Institute while also pursuing her MSN-Family Nurse Practitioner at DeSales University.  Christina enjoys spending time in nature, traveling, and of course, practicing Yoga as often as possible. Be on the lookout for more information about her journey and private and semi-private Yoga classes on her upcoming website at www.SgarletsSanctuary.com.

1. What type of chronic illness were you diagnosed with and when?
I was diagnosed with Castleman’s Disease beginning of the fall semester my “senior” year at Penn State. I had my first lymph node removed the March prior, but that was inconclusive. When it grew back 3 months later I had a second surgery and that was when they sent the specimen to Penn Medicine and diagnosed it as Castleman’s. Castleman’s Disease is similar to an autoimmune disease, except that my body’s cells are not attacking themselves, Castleman’s cells residing in my lymph nodes are releasing the toxins which attack my body. The only cure is chemo therapy, and neither they I would want to do that until I am in a much more advanced stage of my disease, so at this point I am just taking care of my body the best as I can.
2. What is the most important thing you have learned, living with this disease?
I learned that you can not let yourself be engulfed with worry about how your life will play out with living with a chronic disease with unknowns. Just take life as it is and stay positive. Learn how your body reacts to different situations and different foods and live by the 90% rule. If you do the right things and eat the right things 90% of the time, your body will forgive you for those small cheats. And you can’t control what is happening inside your body, so stressing out is only going to make it worse. Live life, have fun, stay positive, and let what will be, be.
3. It is so easy to get overwhelmed by all the contradicting information out there. How do you know what information to trust?
I’ve learned to just trust my body. I of course educated myself medically by talking with my physicians and acupuncturists learned which foods to avoid to help my body be at its top functioning ability. For me this means to avoid inflammatory foods like wheat (gluten), refined sugar, and processed foods. I have found that if I am careful with what I eat, I can live a very enjoyable life. It really isn’t very hard to make these changes, but it definitely takes will power and some discipline, especially at work when people bring in pastries and cakes. That’s why I would pack my own lunch and keep some tasty snacks near by. I found that by educating my co-workers on my dietary restrictions and why that they became much more acceptable and would plan around them, even making me a gluten free cake for my last day at the office.
4. Do you believe that lifestyle has an impact on how the body heals itself? How so?
It absolutely does. I am studying to become a Comprehensive Yoga Therapist (CYT) and this is the focus of my studies.  Chronic disease does not have to control us, we can control it through lifestyle changes. No matter what your disease is, you have the choice to let it take over your life and cause you to live in pain, or to make some changes to gain your control back. I’m hoping that in 3 years when I graduate from CYT and my Nurse Practitioner that I can help others see what lifestyle changes they need to make in order to improve their quality of life and heal their body.
5. What changes have you had to make in your life due to your illness, if any?
The biggest change I made was my diet. Prior to starting my own study of Yoga Therapy I was already avoiding processed food, fast food, refined sugars, sodas, junk food, etc. But after learning about the effect those have on my body, it has become easier for me to just say “No” to those things. I have also changed the way that I cope with stress in my life.  Stress makes anyones immune system weak, and for people with autoimmune disorders, it can wreak havoc on their body. A huge stressor of mine was my previous job. It was a very difficult decision to make, but I had to leave that position. I was lucky enough to be able to just switch gears and go back to floor nursing, but for some people they may just need a little time off to recover if they can manage that, or switch to part time, which is essentially what I had to do. Our bodies are the only one that we have, and when you have a chronic disease, you need to take as good care of yourself as you can. And if that means sacrificing some things in order to work fewer hours in a week so that you have more time to take care of yourself, then that may be a decision that you have to make.
6. Would you say a persons mental/emotional health plays a major roll in their quality of life?
Absolutely. If you allow yourself to become too stressed or depressed over your chronic disease, it is going to make you feel worse. I was in that situation over this past winter. I was getting numerous infections and being on constant antibiotics was making my body sicker and weaker. I was fortunate enough to be able to take a vacation, which helped me relax and kick the cycle of infections. Similarly in the beginning of the summer I was starting to cycle back into back to back infections and was able to take another break to get better. For a time I was seeing a psychotherapist, which was helpful. I also almost went on antidepressants, but instead chose to start acupuncture. Through acupuncture, yoga, and meditation, I have been able to greatly improve the quality of my emotional health. I definitely recommend people to seek help if they feel like they may need it. It is a shame that there is such a stigma in our society for people who need help with their emotional health, and so few practitioners.
7. Working in the medical field, do you feel the majority of people know their rights as a patient?
I think that the biggest patient right that people do not comprehend is that you are in charge of your health. You can’t just idly go with what the doctors say. You have a choice to accept what they tell you, succumb to their diagnosis and treatment plan, or go out and find alternative views or changes that you can make to accompany their treatment plan. I must have gone to 10 different specialists before I decided to go outside the box and go to acupuncture. That’s what works for me. Now I’m not saying to stop medications and treatments, but look inside yourself and try to figure out what is at the core of your condition. I would definitely recommend looking into Yoga Therapy, or another alternative holistic therapy. You may need to stay on medication and treatments long term for your chronic disease, but you can help yourself with the side effects and other psychosomatic (mind-body) interrelations with your disease and life through alternative holistic measures. 
8. Why do you think educating yourself about your disease is so important?
You need to know what is happening in your body in order to understand what is going on. Just listening to what the doctor tells you will not help you heal. Going on to the .org sites to find the true research and education about your disease is the best thing you can do. You can also find support groups and forums there. I would stay away from just googling your disease and definitely stay away from WebMD. That site can be very confusing and is too general for the general population. It is very easy to misdiagnose yourself with things which are not happening in your body and cause yourself more worry and stress. And have a conversation with your health care team. There will often be a nurse or Physician Assistant around who can break down things a little better and have the time to explain things and discuss your medications and treatments.
9. What do you personally do to cope when you are having a flare day?
If I am able, I take time off work, even if it is calling my manager and saying that I can’t come in until 10 and give myself a few more hours of sleep. I also practice Yoga daily and take time to mediate. One day was so bad that I made an emergency acupuncture appointment, and had to drive an hour and a half there and 2 hours back, but it was what my body needed. It’s important to remember that when your body is flaring, it is trying to tell you that something is wrong, and you need to honor it and listen to it, or else it will just get worse.  
10. If there was one tip you could give to those with chronic illness, what would it be?
Stay positive. More than anything else, staying positive is the best thing you can do for your body. Coming from a Yoga Therapy side, I try to keep all things around me “pure” and positive. This means that I listen to Joel Osteen around the clock. I have Sirius XM radio and put him on as soon as my alarm goes off and put him on through work. I don’t necessarily subscribe to the non-denominational Christian part of it, but every moment I get, I tell myself “I’m blessed, I’m healthy, I’m strong, I’m prosperous, I know that my best days are still out in front of me.” You don’t have to go along with everything that he says, but believe me, he is one super positive person and listening to him has been a life changing experience these past few months. You can also find him on YouTube and listen to free playlists. You have the power to feed your mind and body positive or negative things. Instead of watching the news, I watch Joel. The news is horribly negative and honestly, there really isn’t much we can do about everything except let ourselves get upset. Joel Osteen uplifts me. Find things that make you feel good, and stick with them. Don’t let negative thoughts bring you down. You have the power within you to get and keep yourself healthy and be a happy positive person who happens to have been diagnosed with a chronic disease, but you are not a chronic disease. 

You are a wonderful, happy, healthy, strong being. And of course, Namaste.

Readers–I’d love to hear from you, what was your take-away? How do you deal with a flare mentally and physically? Have you spent time educating yourself on the specifics of your disease?

How to Shift Your Mindset to the Positive

How to put yourself into a positive frame of mind each day for women with IBD
Many thanks to @bulldog_bonnie for the use of this image. You can follow her on Instagram! Go on you know you want to! She is too adorable!

One of the hardest things can be actually staying positive when you are in the middle of a flare. It’s hard to see the positive in your life when you are stuck in the hospital tied up to a bunch of different IV’s & you can’t move! But I’m here to tell you that there absolutely is a way to see the positive DESPITE all the struggles and current challenges you are going through!

“How Jana? How can I do that when all I see is medical this and medical that!! It’s all too real! Doctor’s appointments, insurance phone calls, piles of medical bills, numerous medications to take, trips to the bathroom, testing, bloodwork…the list goes on!!!! It just takes over my entire life.”

Believe me, I know exactly what you are talking about because I have been there and I’m still there!! That is just the medical side of your journey, and the management and upkeep of your disease. That side of your life does NOT define who you are! Those are just things that you must do. Granted they are usually annoying and frustrating things that you don’t want to do!

I can’t take away all those things that we have to go through. And I say “we” because I’m right there with you! What we CAN do is change our outlook on the situation we deal with daily! All it requires is a simple shift in your focus! If you consistently see your day as an annoying frustrating thing that you don’t want to deal with. You are inevitably going to bring yourself down. Why not take a few minutes to think about what REALLY matters in your life and what really makes you happy as a person! And then focus your life around those things!! The rest of the pieces will fall into place or can be worked around what really matters.

How do we begin changing our mindset?? Here are a few tips that I have found helpful!
I have to be honest with you though–You have to be WILLING to change your mindset and look at things differently. If you aren’t willing, then these tips will not help you. You have to want a change in your life for the better. That being said here are my tips:

Decide what your priorities are! This world we live in truly has us all focused on the wrong things. Work comes first because we gotta pay the bills, right? Guess what!? Life is NOT about money! Or at least it shouldn’t be! Why? Because it is just paper. Period. You can’t take it with you. Enough said. Our priorities should be our own health, our family and what makes us happy! Because let’s be brutally honest with ourselves–if we don’t get any enjoyment out of our lives…what is the point?!? We NEED to make our happiness and enjoyment a priority in life! {And I say this very specifically for those of us with chronic illness because our days are so often spent managing our disease complications.} If we LET our total and complete focus be about everything medical that’s going on with our bodies and don’t leave room for anything else–I don’t know about you, but for me that gets really depressing really fast! And I don’t want that for any of us! So check where your priorities lie and find the time for what matters most in your life!

Change your thought patterns! As soon as a negative thought pops in your head, make note! Then try spinning that into a positive! How could you look at that thought in a different light?
For example–

Negative thought–“There is no way I am going to get through this day. I have absolutely no energy!”

Positive Spin– “I am fatigued today, but I will do the best I can like always. I won’t feel guilty if I need to take a few naps.”

Notice, how the second thought is kind. If you start thinking in a kinder way with yourself, you will see a change in your happiness levels too. Go easy on yourself, because this is a hard journey! It is hard for anyone to deal with! You are no exception, so be kind! Another way to think about it is–what advice would you give to your best friend if she were going through the same thing? Wouldn’t you be honest and kind with her? Do the same with yourself!
And I’d also like to point out how the positive spin is realistic. It’s not fluff or sugar coated. It’s isn’t lying to yourself or fooling yourself. It is realistic and training yourself to think in a kinder more positive way. It will take a little time to get better at shifting your thoughts to the bright side!

Remember your Blessings! Maybe it’s the lovely kids you have, your puppy dog, or your spouse that you are thankful for every day! It could also be your amazing doctor that you were lucky enough to find! The gastro nurse you call every week with a new problem and she listens! Focus on the good in your life! And most importantly, do it EVERY SINGLE DAY! Ever since I stopped and took the time to look at all the good things in my life, I have noticed I am much happier on the inside. I have more of an inner peace. Now do I have bad days! Absolutely, I am a human! But each time I grow and learn more.

Do something for yourself! Take 20-30 minutes a day to do something that fuels your soul! Something that makes you happy. It could be reading, painting, drawing, or even playing video games. As long as you get enjoyment out of it. This is such a simple concept but so often as women we just forget! Why? Because there is some weird notion that we have to put everyone else’s needs above our own. No! You are not selfish for taking care of yourself. You know when you get on an airplane and they give you the emergency safety speech? They mention that you should always put your own oxygen mask on first before helping others! Why? Because you can’t help others until you’ve helped yourself! So…no arguing just go do something for yourself!

I hope you find these tips helpful! I know they have helped me to really think about what matters most for me in my life! It is actually one of the reasons that I started this here blog! It fuels my soul. I know that writing about my journey is likely helping others going through the same things and in turn it helps me!

I’d love to hear your feedback if you try any of these tips! What works for you in keeping yourself positive? I love hearing your ideas and tips too!

%d bloggers like this: