Medical Records and Patient Empowerment

So as I was participating in the weekly #hcsm tweet chat tonight, there was a discussion around health records and data and who owns what. I’m not sure if I knew this previously or not, but come to find out: in the state of Michigan, your health records are actually  owned by the healthcare providers. 
  
http://youtu.be/GHFEjVjqVIA via Eric Topol 
 
Now don’t get me wrong, when it comes to personal information, I’m one of the most transparent people I know. None of my social media accounts are private or locked down, I blog about my health information, and I regularly share health experiences on social media. That being said, it’s not about privacy necessarily, to me. 

  
In my opinion (and I would argue most others), your medical results and health records should belong to you. Who paid for the tests/treatments? I did. Who had to physically and mentally endure all of that? I did. Who has to live with those results and diagnoses? I do. I mean, for effs sake, it’s my own body! 
I know this is partially an exaggeration, but it makes me feel weirdly and creepily like my body is just a host to be harvested for healthcare providers to own. Gross! Obviously, I know that isn’t the case, but for them to be the owners of my medical records, it feels a bit ‘Big Brother’ to me. 

  
Here’s where it’s a double-edged sword. I would love to utilize healthcare records and health data to transform the care model. Think using wearable devices to send data and readings to your physician. Or using social media to interact with your doctor, then taking it offline for specific questions (due to HIPAA). That would transform the care of patients, especially those of us with chronic diseases and undergoing the disease management process. 

  
But why don’t I own that information? It kills me when I have to PAY to mail my records and get a copy of them. Seriously?! 
There’s something wrong with a law that takes data that is as individualized and personal as health care data and suddenly removes ownership from the individual and allows a doctor and its office to have complete control. It’s like we’ve found a loophole to HIPAA. Or we’re reading the small/fine print here. 

NOT COOL, Michigan. NOT COOL.

What do you think?

xo,

Chronically Kristin

Naysayers and Misunderstandings

Yikes! I apologize for my big gap in posts here; I’ve been caught up in working a lot lately and my little blog has fallen by the wayside in the past month. I vow to be much better moving forward! Anyway!

You can have a conversation with just about every individual that suffers from chronic diseases and they will have experienced the same interactions about said disease with those around them. I’ve talked a lot before about how it’s a balancing act to ‘manage’ the different relationships in your life when you have chronic and autoimmune diseases. Those closest to you tend to be somewhat understanding and helpful. Even others are sympathetic and show concern. But when you throw the word chronic into the situation, our brains have a hard time fathoming the gravity of that. Humans are meant to understand an acute ‘problem’ and then see the solution or cure, and then we move on. Well, that’s impossible with autoimmune diseases as there is no cure. 

  
Here are some of the most frustrating, yet also funny (funny ridiculous, not funny haha) comments chronic and autoimmune disease fighters deal with. 

  • “Wait, you’re still sick?!”
  • “You’re sick again, weren’t you just sick a few weeks or month ago?”
  • “You should stay positive! You can get better that way.”
  • “Have you tried ___? My coworker’s friend’s brother’s girlfriend’s mom did and she was cured!”
  • “If you cut out ___ you wouldn’t be sick anymore.”
  • And on and on…

It’s a double-edged sword for me. On one hand, it’s so frustrating and ignorant. But on the other hand, invisible illnesses are just that: invisible. So I understand why people have a hard time. It’s true that unless you have these diseases, you really can’t understand 100%. So I have to give people a little slack. But there’s a fine line between supportive and trying to be a medical professional or somehow acting like there is some easy fix. I won’t get better. It’s called chronic for a reason. 

  
Then we move on to the naysayers. They have a dotted line to the people described above, but they’re different. And worse. These are the people who don’t believe you. Who think you’re faking it. Who think you’re weak or can’t handle it. Or who think you’re a hypochondriac. These people can add rude, cold, brash, and unsympathetic to their resumes. 

  
In fact, I actually have an ex-boyfriend who dumped me because he thought I faked passing out and a trip to the ER. That’s right, that was the reason he used. I did it to get attention and ‘test’ him. (Asshole)
Here’s the thing. This isn’t an easy life. These are not easy diseases. And when someone accuses us of faking or exaggerating or what have you, it’s the lowest blow you can give. It’s a straight shot to the heart and like you got the wind knocked out of you. Those are the people I wish I could switch places with for a week so that they can deal with my body and my immune system for a bit. They’d run screaming. 

  
But. In the grand scheme of things, those people are not worth the little much-needed energy that I have. And I don’t have time to waste on them. No matter how soul crushing it is to have friends, or acquaintances, or coworkers, or loved ones, or what have you that act that way or live that sense of entitlement and ignorance. 
One of my many goals as I battle chronic diseases is to raise awareness, lower the stigma, and form less ignorance around our struggles and illnesses. In doing so, I hope to become a voice and an outlet for other patients. 

  
To do this, I’ve decided to do two things on a weekly basis. And I’ll be starting them sometime in July. I’ll be updating this site to include links to some live conversation over chronic diseases. I plan to use Meerkat to do a weekly live Q&A, and I plan to do a weekly tweet chat. Both will revolve around the idea of ‘My Invisible Life.’ 
So here’s my call out:
What kinds of themes and topics would you like to see discussed? What questions do you have? What experiences are you looking for?

Sound off in the comments below, or tweet at me (@kristinmcoppens)! I’m excited to start interacting with everyone more. 

xoxo,

Chronically Kristin

When the Unexpected Lingers

Hello, hello! It’s been just a hot second, but I have been swamped with work and utterly exhausted any other moment. But here I am!

Another reason I haven’t written a large amount lately is because I’ve been in pain. I’ve had about 8-10 days straight of consistent pain. As I’ve written previously, I don’t talk about my day to day symptoms that often. Because I do have discomfort of some kind every day, I tend to just acknowledge it myself and try my best to move on with my day.

chronic_fatigue_syndromeSo what have I been feeling. Because it’s all about using this forum to be honest, in the hopes of inspiring others and allowing us all to feel a bit less alone.

I’m not entirely sure why I’ve been in a lot of pain for the past week. It could be the weather. It could be my schedule. It could be medication. Or it could be nothing, just the unexpected for no reason. As much as I would love to pinpoint exactly why I’ve had heightened symptoms lately, I know better than to hold onto that and demand answers. In saying that, the situation just is what it is. I’m not saying that it’s easy and that I don’t ever wonder why or ask the questions that I know in my gut have no answers. But I do try not to dwell on that.

I’ve been so exhausted lately. The levels of pain have been hard to ignore, so I think I’ve been hyper focused on the things that fill my day and keep me busy. At work, the feelings linger. And sometimes they’re overwhelming and I have to take a deep breath or two. But the great thing about work is the distraction and the fact that I thoroughly enjoy what I do.

Once I get home, it’s hard to really motivate myself to do much of anything. I try to force myself out with friends, or cleaning, or running errands. And I don’t ever regret any of that, but it’s just plain exhausting.

When the levels of pain are so high, they make every single task, no matter the size, the most daunting and most rewarding at the same time. I have to take things one step at a time and really power through. Once the task is completed, I feel accomplished and I know that I can do more. Every task can be a challenge, but nothing is impossible.

I can never prepare for when my diseases decide to flare up, or how many of them decide to flare up at once, but the most frustrating part is when it lingers. The majority of the time the unexpected flare ups are one and done. But when the unexpected lingers, my patience, my fatigue, and my strength are truly tested.

There’s nothing better than a long weekend, some decent sleep meds, and no plans. Can’t wait to continue taking advantage of that this weekend.

xo,

Chronically Kristin

30 Things About My Invisible Illnesses You May Not Know

I found this blogger survey about invisible illnesses on But You Don’t Look Sick. I thought it would be a different way to share some truths about invisible illnesses and, hopefully, raise awareness for these chronic conditions that many of us suffer with, while looking outwardly healthy.

30 Things About My Invisible Illness You May Not Know:

1. The illness I live with is: Well, you have to make that plural. First rule of thumb with invisible/chronic illness: they never travel alone. I have Ankylosing Spondylitis, Fibromyalgia, Chronic Fatigue Syndrome, Rhinitis, and Depression.

2. I was diagnosed with it in the year: I was diagnosed in 2013.

3. But I had symptoms since: It’s hard to tell when my symptoms started. We’ve speculated that my diagnoses of these illnesses explains weird health issues I had when I was younger and being sick a lot as a kid, but we don’t know for sure. The symptoms I had before my diagnoses started 6-8 months earlier.

4. The biggest adjustment I’ve had to make is: Losing the ability to control most anything, and learning how to say ‘no’ where I need to. I have learned to slow down when my body needs it; I have learned my triggers and how to unwind. And I’ve learned that freaking out and getting upset every. single. time does nothing but cause more pain and anxiety. Sometimes you just don’t get to have all of the answers.

5. Most people assume: that I will just get better. It’s hard to truly understand an invisible illness if you don’t have one. Since the person looks healthy on the outside, they seem healthy to others around them. I often get that look of: “Oh, you’re STILL sick.” Well yeah, that’s what chronic means. I’ll always have this. There is no cure. I’ve come to terms with it, maybe you should too. 🙂

6. The hardest part about mornings are: waking up. It’s very hard for me to get up in the morning because I’m always so exhausted. I usually snooze 3-5 times once my alarm goes off. And it’s a constant battle of planning when I will shower, how early I have to get up, when I will wash my hair, and when I get to have a few extra minutes of sleep. Once I am up, the next battle is an hour or two of stiffness to work through. Pain and stiffness always subside, it’s just about moving through it.

7. My favorite medical TV show is: The one that I watch religiously is Grey’s Anatomy. I’ve watched that show since the beginning and I feel dedicated! Even if it isn’t that good anymore. But the medical TV show that I can relate to the most because of my chronic illnesses is House, of course. It’s interesting to watch the doctors try to diagnose someone. I can relate to the feeling of stumping the doctors, of not being able to get all of the answers to how you’re feeling or what your tests say.

8. A gadget I couldn’t live without is: I would never be able to live without my iPhone, for a number of reasons. First of all, I work in social media, so I’m always connected in some way or another. Second of all, social media, and my WordPress app allow me to stay connected to all of you and to others around the world that are dealing with chronic illness. I am also able to use my phone to pass the time during doctors appointments, tests, and my 4 hour infusions. I can stay up to date with current research, use support groups, or even just distract myself when I need to.

9. The hardest part about nights are: Getting my body to be comfortable and fall asleep. I usually have to take some kind of medicine to go to sleep. This could be because I can’t fall asleep, or most frequently, that I can’t stay asleep. I have to listen to my body and get a large amount of sleep. This doesn’t always match up with what my brain wants to do. But not getting that sleep is a vicious cycle that will ultimately lead to getting very sick and not being functional for anyone.

10. Each day I take 6 pills & vitamins. I get an infusion every 4-6 weeks.

11. Regarding alternative treatments I: I don’t discriminate in treatments or opinions of ideas. I think that anything that will make you feel better and stay healthier is a good plan. I don’t have a problem with modern medicine and I literally could not live without it. But I try to counteract that toxicity with alternative therapy. What works with me is yoga, essential oils, heat therapy, and vitamins.

12. If I had to choose between an invisible illness or visible I would choose: I would choose invisible every time. Though it can be frustrating that people don’t understand, or don’t think I’m really sick, I would hate to see the looks on people’s faces if it was visible. I like to fly under the radar, and my strength and perseverance allow me to do this when I have an invisible illness. I have become good at advocating for myself and I have learned to cherish the days were my illness isn’t as obvious.

13. Regarding working and career: I’m extremely grateful to apply my two passions and actually make a living doing so. I work in health care and social media, what else could I want?! When passion becomes what you’re supposed to do each day, it’s a truly happy professional and personal existence.

14. People would be surprised to know: How much pain I am in on a daily basis. It might be surprising, since my entire life is on social media, that I don’t share the level of pain I’m in every day. It’s always there, sometimes more than other days. Sometimes it’s so bad that it’s everything I can muster to just focus on writing an email at work. And sometimes it’s so low that I want to run around and forget that I actually have these diseases. I’m about 50/50 with those two types of days, but you wouldn’t be able to tell in the slightest.

15. The hardest thing to accept about my new reality has been: Having weaknesses and confronting the unknown. I can’t prepare for a flare, or a sickness, or when I’m going to have a bad day. Not having enough energy to be the person in my head and in my heart is tough. I just hope that others can accept me, the new me, or at least the new parts of me.

16. Something I never thought I could do with my illness that I did was: When I was first diagnosed, I never thought I would become this strong. I never thought I would be able to live a somewhat normal life, still workout, still do the other things I enjoy. I thought I would become irreversibly disabled. And though my illnesses will never be cured or go away, I’ve learned so much about management, reality, and strength. Chronic illness is remarkably humbling.

17. The commercials about my illness: There are no commercials that talk about Ankylosing Spondylitis, Chronic Fatigue Syndrome, or Rhinitis. Though there are occasional commercials about Fibromyalgia and Depression. Overall, the awareness is still a huge work in progress.

18. Something I really miss doing since I was diagnosed is: I probably miss filling my life and my schedule to the brim. I used to love being jam-packed, always on the go, running to the next thing. But now, I need sleep. I need rest. I can’t overwhelm myself. Realistically, the latter is probably healthier.

19. It was really hard to have to give up: Probably the freedom to do whatever I want, stay up all night, fly by the seat of my pants, and not have a worry in the world. I guess, in a way my independence. I’m still extremely independent, strong-willed, and filled with strength. But now I have to consider my health and my illnesses before I do most things. I have to say no. I have to save money and have a cushion for the unexpected crisis because it has proven to occur. It’s okay, but it can be very hard to relinquish that and admit that I need help, or I might be physically weak.

20. A new hobby I have taken up since my diagnosis is: I wouldn’t say it’s a new hobby per se, but blogging has become a fixture in my life since my diagnoses. I’ve always been a writer, and I’ve published a lot, but blogging about chronic illness and becoming a patient advocate/ePatient on social media has completely changed my life. It’s something I might actually be grateful for when it comes to chronic illness. I also take a lot more yoga classes and practice mindfulness–both of which are game changers.

21. If I could have one day of feeling normal again I would: Bask in the idea of no pain and no medications. I don’t think that I would necessarily ‘do’ anything special, I just think I would really cherish the feeling.

22. My illness has taught me: Who is a true friend and part of my family. There is nothing like getting sick to really test your relationships. If you want to see who will stick around, just get diagnosed with chronic illnesses.

23. Want to know a secret? One thing people say that gets under my skin is: The worst statement is when someone goes, ‘Oh yeah, my knee hurts like that,” or “Oh, my grandma has arthritis.” I would hate to ever discount anyone, but having an autoimmune disease that causes a depleted immune system and permanent arthritis damage is quite different than getting arthritis because you’re 85 years old. Like The Spoon Theory author states, “The sentence usually starts with those words and ends with a tale of a broken leg, or a bad back, or a particular horrible flu. Try having them all at once- every day, then tell me you know how I feel.”

24. But I love it when people: I love when people treat me the same. I don’t like to draw attention to myself, and I don’t like to be pitied. There are some people that act like I am very fragile, but guess what. I’m not. Actually, I’m the exact opposite. Other than that, just having the love and support of the people in my life is more than I could even hope for.

25. My favorite motto, scripture, quote that gets me through tough times is: Pain from today is strength for tomorrow.

26. When someone is diagnosed I’d like to tell them: It will be one of the hardest things you’ll ever do; It will feel hopeless sometimes; pain with get to you and make you feel alone; sometimes you’ll want it to all just end and go away; you’ll have to start saying no to people and to things; your life will drastically change; your health will scare you, on a regular basis. But the most important thing is that it will all be okay. You will become the strongest person that you know, and you will become an advocate for your own health and the health of others. You will know what is best for you better than anyone else, and you will build the confidence to stand up for that. Also: you are not alone.

27. Something that has surprised me about living with an illness is: That the medical community is inspiring and that your life can change in an instant. Within some of my online support and chat groups, I see people talk about having to wait 20+ years for a diagnosis, or give up a job they love, or what have you. It’s amazing how far medicine has come to give those of us with chronic illnesses a real chance. There is SO much left to do–but I’m optimistic we can get there. I have to hope for that.

28. The nicest thing someone did for me when I wasn’t feeling well was: This is a tough one. I am unbelievably grateful for my friends and for my family. I would say that my family’s love and support and dedication to research and more is unwavering. I am so blessed to have the parents that I have. I cannot begin to describe what they’ve done for me throughout my life to support me when I’m sick or get me the best treatment possible. My friends are right up there as well. Sitting on the couch with me instead of going out because I don’t feel well; sitting for four hours next to me at my infusions just to keep me company and talk. The list goes on and on. I’m an amazingly lucky person.

29. I’m involved with Invisible Illness Week because: It’s not technically Invisible Illness Week yet, but I wanted to fill this out anyway; so, here is why I think week’s like that are important: To me, awareness is the key goal. Sure a cure would be nice, and I really hope for one in my lifetime; however, what seems more tangible, and more realistic to me is support and spreading awareness. I’ve talked about how important it can be to find other people with chronic illness to talk to, and raising awareness and dedicating health observance weeks and months to these topics make all of us seem just a bit less unique and alone.

30. The fact that you read this list makes me feel: hopeful, grateful, and surrounded by people that care and want to spread awareness.

xo, Chronically Kristin

My Little Piece of “Cake.”

Yet again, I found myself awake in the middle of the night. Tonight it was 3am. I didn’t take my sleeping medicines, for the sole reason that I thought I was tired enough to sleep through the night without them. And for the fact that I hate taking them in the first place. But alas, as with every single night, I always think I can do things, like sleep, without a little help. And every single time, I don’t sleep. Tonight I managed to get 4 hours. Better than nothing I guess.

So, I decided to catch up on some shows, and watch a movie, “Cake” with Jennifer Aniston. I have heard many rumblings about this movie, both good and bad, and have hesitated to watch it for a number of reasons. Ultimately, curiosity got the best of me and I rented it on Amazon Prime tonight, or this morning I guess you could say.

MV5BMTc4NDYzNTcyM15BMl5BanBnXkFtZTgwNjQ5NzQ0MzE@._V1_SY317_CR0,0,214,317_AL_“Cake” is a story about a woman (Jennifer Aniston) that lives with immense chronic pain. Her pain is a result of a terrible accident that severely wounded her and killed her young son. The movie doesn’t go much into the accident and how it happened, but you tend to presume from the rest of the plot and dialogue.

From Wikipedia: “”Claire” is an acerbic but pleasant woman who has become embittered with her life after surviving a car accident, which killed her child and left her in chronic pain. She becomes fascinated with Nina, a woman in her chronic pain support group, who recently committed suicide, by visiting her home and befriending her husband and son. Together, Claire and Nina’s husband deal with their losses.”

In a general sense, I think it’s a good thing to have Hollywood recognize the topic of chronic pain. At the very least, it’s a step in the right direction. To my knowledge, there have been few movies that deal with chronic pain and chronic illness. Aside from “Cake,” I can think of the following: “Garden State,” “Jack,” “Mask,” and “Theory of Flight.” I’m sure there are a few others, but those are what I know. Regardless, the list is short, and the recognition is skewed.

Back to “Cake.” While Aniston’s character does a decent job showcasing the physicality of chronic pain, I found the overall plot, as well as the reality of the situation to fall short.

_19-137988-2What I believe the movie got right: constant pain and symptoms, desperation, feeling like nothing will help ease the pain, pain clinics, support groups, the lack of understanding from others, and the toll that chronic health issues takes on the relationships around you.

What I believe the movie got wrong: lying, pain pills, alcohol, suicidal thoughts, acute accident and chronic pain, chronic illness and chronic pain.

Let me elaborate on my critiques of the movie. While I do believe touching on chronic pain is a step in the right direction in Hollywood, I was disappointed to see so many of the stereotypes of chronic illness and chronic pain shape the main characters and people’s perception of them. Yes, chronic illness and chronic pain is difficult to understand. Yes, it can be exhausting on an outsider to see the person next to you never get better. Yes, it is very easy to feel depressed and it is very easy to get into the habit of taking pain pills and becoming hooked on them.

Nevertheless, those facts do not define a person with chronic pain or illness. In fact, I find it kind of insulting to insinuate that we are all pill poppers and suicidal. I am not trying to downplay the necessity of pain medication or advocate against it. Nor am I trying to make light of depression and suicidal thoughts. I would never dream of that. However, I am trying to make the point that the situation is not so black and white. You are not either healthy or in so much pain that you want to kill yourself. Yes, I’m in pain every day. Yes, it’s exhausting and depressing. But no, a suicidal thought has honestly never crept into my mind. And I’m thankful for that. Additionally, any pain medications I might have are for emergencies only. When I’m in a flare so bad that getting out of bed, or really doing anything but just laying there, hoping to just maybe fall asleep–that’s when I might consider taking pain medication.

The biggest critique I have of the film, other than the use of drugs and alcohol, is the type of chronic pain and the portrayal to the media when promoting the movie. Everything I heard from the media and the trailers was about how the film was going to shed light on chronic pain and what so many people deal with every day. It was going to show illnesses that people have zero control over. That part of the promotion made me excited to see a huge Hollywood star take a risk on such a common, but almost taboo topic. Yet, there is a huge difference between chronic pain from an accident and chronic pain from a chronic illness.

I would love to see a movie made about fibromyalgia. Or how about a movie made about an autoimmune disease. Let’s shed light on the battle with your own body. Let’s show what it feels like to have no control over a system that is supposed to protect you from harm and illness. Instead, it turns on you and attacks you. What about a movie that shows how susceptible we are to developing more than one chronic illness once we have developed one.

My guess is that it’s difficult to portray those diseases. I can tell you one thing–unless an actor or actress actually has a chronic illness, there will be no way they can accurately portray it. So let’s find someone who does.

Maybe it’s desperation. And maybe it’s my own battle to overcome, but it is just so tempting to have someone feel like you feel for a few days. You reach out and you search and you search for that understanding from those around you–but it’s lost. And it’s not their fault.

I don’t know. I guess my point is that while “Cake” was a decent movie, and the physical part of chronic pain was showcased relatively well, I was disappointed that instead of real scenarios, we saw stereotypes being acted out.

Like I said, we’re not all nasty, pill-popping addicts. Some of us actually want to feel normal, even if the reality of that is next to impossible.

xo,

Chronically Kristin

The Invisibility of Invisible Illness

I’m just a little bit over two years into my diagnoses of chronic diseases. Who knows how long I’ve actually had them, or at the very least had the beginning symptoms. But March 3, 2013 feels like it was a mix between my D-Day and my Birth. It’s bizarre to feel like your world is ending at the very exact time that every unknown and every question starts to have an answer.

image
Being diagnosed both answered pending questions about my life thus far and opened up a Pandora’s box of more unknowns. I have no idea how different the last two years of my life would have been if none of my health issues ever surfaced. And as awful as they are, I don’t think I would trade the depth of strength I have been able to acquire in that short amount of time as well. I pride myself on always having been a relatively strong person. I’ve always had some sort of health issue or surgery or illness. I was a pretty sick kid actually. But the strength I’ve acquired in the last two years is a different and a more robust kind of power.
I think I’ve talked before about how lonely these diseases can be. Aside from the fact that the diseases are hard and chronic and will stay with you for the rest of your life, they also hide themselves very well. Tell me to stand in front of you and point out what’s wrong with me? I can’t do that. Or tell me to show you where the pain is, or where the diseases and damages are? I can’t do that either. Almost 100% of my chronic illnesses are invisible. On the outside, I look perfectly healthy and normal. It’s a blessing and infuriating all at the same time.
IMG_0052-0Am I invisible?
Sometimes, it sure as hell feels like it. There are days (probably more frequent than I care to admit) that I wonder what it would be like if a family member or friend of mine felt my life for 24-48 hours. How would their view of the world, of me, change? I wouldn’t wish an ounce of my illnesses on my worst enemy, but the easy way out would be if someone could just trade bodies with me for a couple days. Obviously not realistic, but an interesting thought at least.
Being a social media professional has helped my coping and acceptance of these diseases more than most anything else. The digital world is a friend, a family member, a support system, a doctor, a caregiver, a woman, and a chronic disease fighter. I have met all of these characteristics through social media.
One of the first steps I took two years ago was to search social media for information, education, and supports groups or chat rooms. I searched hashtags on Twitter: #ankylosingspondylitis, #autoimmunedisease, #chronicillness, #fibromyalgia, #arthritis. I searched for private support groups on Facebook and requested to join them. I read blogs, I read scientific journals, I researched treatments, I asked questions of my peers, and I read and I read and I read.
Not only does the social media community allow you to ask questions and receive first accounts of other people’s experiences like your own, but it also addresses that feeling of loneliness, even if it just addresses the tip of the iceberg. Being lonely with chronic illness is not about having physical people around you, I have that and I love each and every one of you dearly. Rather, this loneliness lies in the isolation of having chronic diseases and the difficulty in finding others that understand or have experienced exactly what you’re going through. Finding that resource is absolutely invaluable.
I’m extremely open with what my diseases are and the fact that I have them. I have no problem sharing that and will tell anyone who asks or elaborate for any questions they might have. I’m not so open about how I feel physically, especially on a day to day basis. That’s not to say that I lie about it, I’m just not vocal about how I feel. I’m working on it though. I guess I somewhat hide that part for a few reasons. For one, it’s hard to describe. Especially since, as I stated, I look completely fine. So I normally just say I’m not feeling well that particular day, if I say anything at all. Another reason probably has to do with frequency. I have symptoms in some form or another every single day. And the average person is not cut out to deal with someone saying they don’t feel good 24/7. As humans, we are hard wired to want to fix something and see the end in sight. Well, there is no fix for chronic diseases, and there is no end in sight. Therefore, I imagine it would make others uncomfortable for me to vocalize every day to day symptom I have.
That’s not to say I’m ashamed of it, or embarrassed. I’m definitely not. But I know how I feel every day and the hurdles I have to jump over to retain a semblance of normality. I guess for now it’s enough that I know the hard truth and not anyone else.
That may or may not be healthy, I’ll have to ask my therapist, haha. But for now, it’s what works.
Anyway, I guess my point of this post is that invisible illnesses are lonely. They can take a toll on someone’s mental health. I’m not perfect, and I have my days or weeks of depression. But my advice is to search for those groups. Use the tools we are lucky to have in this technological age and find others who are living their lives through the same diseases you are.

You could say that’s the point of this blog. I want to connect with people. I want to become an advocate for chronic diseases and meet and talk with others. If one person in one small corner of our world is comforted or at least less alone by any of my own words, then everything is worth it. Everything happens for a reason.

xo,

Chronically Kristin

Fibromyalgia: The Temperature Extremist

Just this morning, I read an interesting article surrounding the correlation between temperature and fibromyalgia. First of all, it makes me happy to continue and see articles, research, and attention around fibromyalgia. This chronic disease is still inching its way into being accepted by society and the medical community. Thankfully, most doctors now agree with the research and will properly diagnose fibromyalgia. But as most things, there is still a niche within that world that have not caught on. My hope is that emerging research, and continuous attention from the media will help fibromyalgia sufferers speak out and get the treatment they do deserve. Not unlike myself, most fibromyalgia sufferers have another chronic disease under their belts. For me, it’s Ankylosing Spondylitis, Fibromyalgia, Depression, and Chronic Fatigue Syndrome. For others it could be Crohn’s, or a different type of arthritis, or many, many others. Addressing the group as a whole, or addressing one at a time helps to control and better the quality of life for all of us.

post_3b218d5a5f1d46188264f89b6e9ee94b_635178919558248000The article I mentioned above came from the blog, Counting My Spoons: Inspired Living with Chronic Illness. The study mentioned within the post originated from Smith, et al: Smith, B. W., Tooley, E. M., Montague, E. Q., Robinson, A. E., Cosper, C. J., & Mullins, P. G. (2008). Habituation and sensitization to heat and cold pain in women with fibromyalgia and healthy controls. Pain140420-428. doi:10.1016/j.pain.2008.09.018.

Personally, temperature and weather are probably the most influential environmental factors to the symptoms of my fibromyalgia. On days where the weather is grey, cold, and/or rainy, my fibromyalgia is in a flare and feels terrible. Another factor is when the weather changes so drastically from day to day or day to night. I can only confidently speak for myself, but I have heard this to be a common symptom for a number of fibromyalgia sufferers.

images-6Anyway, back to the study. The study talks about sensation and habituation. Habituation basically means getting used to something. When you have an itch, or something in your shoe is poking you, most people don’t notice it after a little while. However, people with fibromyalgia seem to be missing that ability of habituation and actually, the thing that is bugging you, that sensation, increases with fibromyalgia. This is called Temporal Summation, which may play an important role in chronic pain.

The study aimed to prove that an increase in temperature produced an increase in pain for women who suffer from fibromyalgia. Researchers tested the participants pain levels, and then increased the temperature by 5 degrees each trial until pain was reported.

At the end of the trials, the study actually found that there was a correlation between fibromyalgia symptoms and heat or cold. In other words, when pain, fatigue, anxiety, and depression were present, the participants ability to tolerate heat decreases. With cold temperatures, participants with fibromyalgia reported pain at 10 degree higher temperature than the healthy participants. This means that fibromyalgia sufferers are more sensitive to cold temperatures just as they are to hot temperatures.

The outcome of this study is important to the legitimization of fibromyalgia for all individuals. It allows us to have scientific research behind the pain we feel with heat and cold. When I explain to people that I love spring and fall, when I used to love the heat of summer, it doesn’t make sense to them. It’s not the hatred of the season, it’s the hatred of the intense pain that comes along with each extreme end of the weather and temperature spectrum.

I hope to continue finding articles like this one in the news and media. It makes me grateful that the scientific community is not only recognizing chronic illnesses and chronic pain, but they are legitimizing it, and spending resources on studying it, treating it, and maybe one day, curing it.

xo,

Chronically Kristin

Facing Your Chronic Fears

This is a topic I don’t talk about often. In fact, I’m not sure that I’ve talked about this with much of anyone. Living with more than one chronic illness is a roller coaster. It’s like hearing a tornado on the weather report and walking right into it. Or having the flu 24 hours a day, 7 days a week, but operating as if you don’t. Don’t get me wrong, I don’t feel like that all the time. And I’m lucky to be able to manage the worst symptoms of my diseases on most days. But the other symptoms, the ones I still can’t manage, or the days where nothing seems to work? Those days are a whirlwind.

IMG_7955Fear. Fear is an interesting concept. Not only does it mean a variety of different things to different people, but some fears can be conquered, while others are like a tiny bug in the back of your mind and there’s no way to prove they won’t come true until the time period of the fear passes and they don’t. Those fears are not unfounded. Those fears are not unrealistic or exaggerated by fantasy or anxiety. (That’s not to say any type of fear is more real or worse than any other type, just that there are different kinds).

Living with chronic diseases introduced a lot of fear into my life in the beginning. A lot of unknowns. A lot of unanswered questions. And a lot of unresolved pain. As I’ve moved forward, and found a moderately successful treatment plan, that fear has proved itself to be less real and less scary. However, as fears often do, they morphed into future fears and general fears of living with chronic illnesses for the rest of my life.

These fears are the ones that may end up staying with me for the rest of my life. And I don’t ever really tell anyone that I’m scared of these things. But they’re always in the back of my mind, itching to come out if I give them just an ounce of attention.

That’s why this post is really hard for me to write. And furthermore, why I’m forcing myself to write it. It’s hard to admit that my health problems leave me scared of certain things. It’s hard to be honest about the possible outcomes or hurdles I might face as I get older. But I also think facing these fears could become possible and maybe that would lessen their severity. Writing all of this down, publishing it for the world to see? That’s my first step. This is the first way I know how to try to take the power away from my fears.

439-book-coverLittle fears pop up here and there if I’m sick or having a bad pain day, or something along those lines. But the bigger fears, the mainstays, those are the fears I want to admit to you right now.

In no particular order, here are my top five chronic disease fears:

1. Relationships and Marriage: It’s no secret that I love love. While I’m perfectly independent and happy to be single, I prefer to be in a relationship and attempting to find the person I could marry. I’ve dealt with the men who can’t handle my illnesses or can’t find enough empathy and support within themselves to be with me. Not worth my time. However, I sometimes fear that I won’t meet someone who is able to handle me with my illnesses. Realistically, I know this isn’t true, but chronic illness fears are strong little buggers. Though the illnesses don’t define me, they are a legitimate part of my life and who I am.

2. Babies: I love kids. I was a babysitter and then a nanny for many years. Now, my niece and nephew are the lights of my life. They’re my heart and I adore them. I cannot wait to have some little munchkins of my own someday. But being pregnant, delivering, and taking care of a newborn baby terrifies me. While pregnant I would have to be off of all of my medications. Though with the hormones, researchers say that a lot of autoimmune disease sufferers go into remission at that time. During labor I could also injure myself easier than most. And after labor, it is known that autoimmune sufferers can go into a painful flare with the absence of those extra hormones. I would automatically be classified as a high risk pregnancy. All of this is far down the road, but scary nonetheless.

3. Work: My illnesses have briefly affected my work a couple times thus far. Although those times have been covered and I’m lucky to have understanding companies and upper management, it’s still worrisome. Within some of the online support groups I belong to, I am in the minority of people who work full time. I fear that someday I won’t be able to continue working full time and doing what I love. I’m young enough now to tough it out every day and ignore the pain, but I do fear that later in my career that won’t be an option.

4. Permanent Damage: Having permanent damage to my spine or other parts of my body is naturally a major fear of mine. Luckily, the Remicade is preventing that from happening. But the nature of my disease is a fusing of the spine when left untreated or uncontrolled. I’m terrified I’ll end up bedridden or in some form or another not able to move around normally due to a damaged spine. I just knock on wood every day that my body never decides to start rejecting the Remicade.

5. Side Effects/Immune System Deficiencies/Sick: Due to being on Remicade and having immunodeficiency as a whole, I am susceptible to a number of health issues. By itself, Remicade suppresses my immune system. I also do not have the antibodies to fight off certain illnesses due to my immunodeficiency. This always scares me because I don’t want to get too sick and I’m prone to catch most of what is going around. On top of that, the side effects of my medications are serious and scary, though rare. The longer I’m on Remicade, the higher my chances of developing cancer and other issues. I try not to think about that day to day because the medication is saving me for now. But I hope to not have to face this fear in the future.

Phew. Keeping in theme with this post–that was scary. Writing those down makes me feel pretty raw and naked, but I’m hoping that sharing them and being completely honest about my chronic illness fears will make them less intimidating and less real for me.

Sorry for such a heavy post this time! But I think it helps to get these fears out in the open. Though I might have to face some of them square in the eyes later in life, maybe writing them down for the world is the first step in beating them.

xo,
Chronic Fighter

Experimenting with Essential Oils

It’s no secret that people who suffer from chronic illnesses are not strangers to medications and various treatment plans. Personally, I have tried and put my body through a overwhelmingly large number of medications and tests. And don’t get me wrong, I don’t regret that, nor do I believe that medication is not necessary. However, I also believe substituting medications with natural remedies can be beneficial for some people.

I know that there will never be a time in my life where I will be off of all medications 100%. I will always need to use Remicade and receive my IV infusions to control and manage my disease. I will always need to manage the amount of pain I am in on a day to day basis in order to live my very full life to the very best of my ability. But if managing that pain, at least day to day, can come from something other than a narcotic or a pain medication, I’m all ears.

I try to do my best in counteracting the toxins that my body needs to right itself. I realize that Remicade is a nasty drug and that my body will eventually hurt from it in some way. However, for now, my body is being made to behave itself while on this drug. In turn, I’m able to live most days without intense back pain. Nothing is perfect, and there is no such thing as a zero pain day for me, but I will take what i can get.

In saying that, I have heard about the usage of essential oils for a number of different things over the years. I’ve been a little skeptical, but I’ve wanted to try them. 1. They smell amazing, and 2. Who am I to say that the benefits aren’t there?! Thanks to a few of my wonderful yogi and naturalistic-focused friends, I was introduced to essential oils.

Essential oils can be used for a number of different purposes. You can use them medicinally, as cleaning products, beauty products, and food products, and much more. I had heard from a number of the chronic illness chat groups I belong to that essential oils can be very helpful to individuals who suffer from fibromyalgia and/or arthritis. After researching the website, getting recommendations on oils and blends from my friends, and visiting my good friend Google, I learned what oils would be good for me to try out at first.

One thing to remember with essential oils is that they are extremely concentrated. In fact, some oils can actually burn your skin if you’re using them topically. You can buy carrier oils to mix with your essential oils that will allow you to utilize the oils topically, which is how I wanted to use them. I bought fractionated coconut oil (stays liquid at room temperature, and does not alter the scent of the essential oils) to use as a mixture with each essential oil I try.

I still have a lot to learn about essential oils, and I’ve come to find that a great deal of the usage is trial and error. Find what works for you, what ailments you’d like to address, if any, and what you would like essential oils to do for you in your life. So far, I am absolutely loving them and so happy to be adding them into my daily routine and medical treatments. I look forward to being able to experiment and add more variety into the oils I use.

To give you an idea of how I started and how I use the oils I have currently, here is a list of the oil names and what they can be helpful for (at least in my life):

-Lavender: Lavender has been used for its calming abilities for years.

-Peppermint: Peppermint can be used for a number of different things. A common use is for upset stomachs.

-Joint relief: Joint relief oils are a blend of wintergreen, camphor, peppermint, blue tansy, german chamomile, helichrysum, and osmanthus essential oils.

-Calming blend: A blend of lavender, sweet marjoram, ylang ylang, roman chamomile, hawaiian sandalwood, and vanilla bean essential oils.

-Massage blend: massage blend mixes basil, grapefruit, cypress, marjoram, peppermint, and lavender essential oils. 

-Grounding blend: A blend of spruce, ho wood, frankincense, and blue tansy essential oils.

-Metabolic blend: Like the lemon essential oil below, I use this one as an addition to my water bottles. It blends grapefruit, lemon, peppermint, ginger, and cinnamon essential oils.

-Lemon: Lemon can be used for both medical and cleaning products. I use the lemon essential oils as a addition to my daily water intake.

-Citrus blend: Citrus blends together the essential oils of wild orange, grapefruit, lemon, mandarin, bergamot, tangerine, clementine, and a hint of vanilla.

If you’re interested in trying essential oils, learning more, and just chatting about them with me, I would love that! Leave a comment or send me a note and we can delve deeper. 🙂

Trials Towards Strength

The past two months of my life have been such a wide range of emotions, while being some of the hardest times I’ve had in a very long time. While working to sustain the person and character I have worked a lifetime to build, I have been able to reflect on the sheer truth and nakedness that we embody as humans. Humanity is full of smoke and mirrors; however, the truth is that none of us can completely hide and fool. Human ability is to err on the side of timidity and descrecion. But human nature is raw and real and messy. And most of all, refreshing. There is nothing quite like forcing yourself to feel. To feel every single drop of pain and suffering, both physical and mental. It’s no secret that I’ve had to bear the brunt of a hard health story. However, there haven’t been many times where the physicality of that pain and suffering has so overwhelmingly meshed with the mentality of it. The past two months have tested my strength and my reality. I have learned humility. I have learned truth. I have learned about blessings in disguise. I have dodged bullets. I have fallen in the deepest, darkest hole I’ve ever come across. I have gained incredible strength. I have opened the blinders of others around me and of myself. And more than most things, I have realized what a cyclical reality we exist in. We live in such a sensitive and impressionable existence. The good part? Forcing yourself to feel every second of it. The bad part? It usually really hurts. I like to think that I have one of the biggest hearts, but the downfall of that is that you feel everything so severely, even if that includes happiness. Nevertheless, I wouldn’t trade any part of that for a second. I truly believe in Karma and that everything happens for a reason. Every second of our existence prepares us for every second of our future. And why would anyone regret that? In the 6 years since I graduated college, I cherish so much of how I have grown, the experiences and memories I have, and how much I have gone through. I could sit here and say why me, or this isn’t fair. And I could sit here and wish and plead to get a few more of the blissful days back. And guess what, sometimes I do. And no, it isn’t always fair. But fairness is a relative term anyway. The truth about all of that is that acceptance and coping aren’t successful nor are they healthy with those frames of mind. I can’t say I’m perfectly well adjusted to my life and the things that I experience. However, I can say that my strength and my ability to remain relatively level headed have saved my physical and mental health. And I can say that for the first time in two months, that dark hole and the physical pain are behind me. The hill in front of me is getting smaller. The summit is in my line of sight. Normality, whatever that means, is within reach. For someone who thrives on proof and thrives on organizational contentment, this is quite the feat, yet quite the hurdle. But I guess that’s life, right? Just when you think you have this whole crazy rollercoaster figured out, something jams the system and you fight like hell to stay on your toes.

%d bloggers like this: