Saturday, May 26, 2018

When An Appointment Goes South

Those with complex chronic illness know; after being tossed around the medical system, we end up somewhat traumatized. Appointments become scary things. We worry about the outcome. We worry about whether our doctor will be able to help or not. We worry that our doctor will give up on us.

And sometimes, our fears turn into reality. Today I was refused a treatment I’ve been getting that allowed me to walk normally again. Horrified? Devastated? Shocked? There is no perfect word to describe my reaction to this event in my life. I had been given a part of my life back with this treatment, and it was now being taken away. 

Unfortunately, with more people than not, appointments gone wrong is a common event. Life with chronic illness really is a rollercoaster, as you get shuffled around to different specialists, offered different medications and suffering side effects, progression of disease. 

I tend to be a very emotional person. When something goes so wrong, I get extremely upset. So although I can’t follow through all the time, I’ve found some ways to cope with bad news or a bad appointment.

1- This is the biggest and most effective one for me; making a plan to move forward. Starting to think of what actions I can take next to remedy whatever has gone wrong. Do I need to see a different doctor? Do I need to take a different approach? What is the next step? Having that plan and that next step has a calming effect on me.

2- Lean on your support system. Whether that be at home or online, don’t keep it to yourself. Think about who in your circle would most closely understand what is happening to you. If they are someone you feel comfortable talking to, they will usually be more than willing to listen and be your shoulder to lean on. Because you can’t do this alone. Here’s a quote I relate to this and enjoy: “You are not a burden. You HAVE a burden, which by definition is too heavy to carry on your own.” 

3- Have a list of things that make you feel good prepared. Whether that be taking a hot bath, some good old retail therapy, eating some ice cream, or binge watching your favorite show. Allow yourself to do these things while you heal.

Friday, May 18, 2018

Why Seperating Your Illness and Your Identity Can Be So Difficult

I was listening to a podcast I did where I was asked the question, “Is there a ‘who you were’ pre-illness, to a ‘who you are now’? Have your interests changed? Do you still want the same things in life?”

My answer was easy. No, I am not who I am pre-illness. No, I no longer want to be a fashion photographer. If I miraculously healed, I wouldn’t go back to school for the same
program. I no longer have the same friends. The people closest to me are not the same people as they were. And that’s okay. 

It’s funny, because when you have a debilitating chronic illness, your life kind of comes to a stand still. But then you look back, and even though not much has changed over the years, there has definitely been a change in the person you are. 

Friends get slowly lost when you become ill, especially with a mystery illness. And I no longer feel any resentment toward that. It’s understandable. You stop being able to do the fun things you were once able to do together, and what you’re going through is so foreign to old friends that they don’t necessarily know how to fit into this life of yours that has changed. That doesn’t make it less painful, but over time you begin to gain a different perspective. 

I used to be super passionate about becoming a fashion photographer. My love of photography started in high school, and for years I did photo shoots with my friends, even doing photography for some small businesses. I started school for professional photography in college, and it was after the first semester that my illness hit. I look back now, and I know that if I were to get better, I wouldn’t return to that program. Through these years of illness, I’ve learned that I have other passions. I never know what will remain a hobby and what will develop into a career, but I definitely know those things have changed. 

When you’re chronically ill with a life-altering disease, your life starts looking a lot different. Your days become choices, deciding where to spend the energy you have that day. For example, I love makeup, but have seldom been able to do it lately because I’ve chosen not to use all my energy up just getting ready. Days that used to be filled with society’s norms become filled with doctors appointments, procedures, and tests. That beautiful walk in the park on a summer day might not be something in the realm of possibilities. 

So with all that, how can it be easy to maintain your identity? Chronic illness does its best to take away your identity. It makes you slowly forget the things you used to love to do, it slowly robs you of the circle of friends you once had, and it makes you question who you even are anymore.

Then: I was very into fashion and makeup. I had great friends that I had sleepovers dates with where we’d stay up until late eating snacks and chatting about everything, from TV shows to school to personal matters. I was going to be a fashion photographer. I prided myself on that. 

Now: I see any friends on FaceTime the majority of the time. I’m constantly taking meds to curb symptoms. I can no longer talk to my old friends in that same relatable way. They work or go to school, and that is their life.  And as much as I love them and wish it was my life too, it’s not. I’m happy to say I haven’t lost my love for fashion and makeup. I’m even considering getting back into photography as a hobby. However, I’ve discovered my true passions; writing and advocating for invisible illnesses. Trying to help people who are on a similar path that I walked. Diving into the Type 1 Diabetes community. 

So in a way, my illness became incorporated into my identity. My passions changed because the things I felt strongly toward changed. And that’s bound to happen. As years go on with a chronic illness, and you learn more and more about disability, you find yourself interested in different things. Regardless of chronic illness, actually, the mind and soul are always growing and learning. It’s never-ending. 

All in all, I think it’s okay to not maintain your identity after becoming chronically ill. I think your identity might have changed anyway, but any major life event can have an effect on who you are as a person, and chronic illness certainly is a major life event. 

But there can come a point where you no longer recognize yourself. You know longer know who you are apart from your illness. Try to remember who you are. You have an illness, but you are not an illness. You are a person, with a favorite color, and a song that makes you smile every time you listen to it. You know what kind of day is your perfect weather. You have a favorite food that makes your lips water. You have more of an identity than you might think you do. Reach for it. 

Sunday, May 13, 2018

Moms With Sick Kids- A Special Breed of Human

This article is dedicated to all the moms whose lives didn’t go as they planned. Whose kid got sick and life took a huge turn. 

To all the moms who have stayed up all night on an uncomfortable chair in the ER because something was wrong.

To all the moms who understand that daily living is hard for us, and help us with tasks.

To all the moms who advocated for us to doctors because you knew something wasn’t right.

To all the moms who wake up in the middle of the night when we’re not feeling well.

To all the moms who put our slew of meds together every week. 

To all the moms who remind us to do things when we forget because of brain fog.

To all the moms who have been in pain watching their child suffer, but hid it and stayed strong for us. 

To all the moms who try every single thing to make us feel more comfortable.

To all the moms who make sure we’re able to live the best life we can under the circumstances. 

To all the moms who have held our hand while we’ve been in pain.

To all the moms who have done whatever you could, like traveling to see different doctors. 

To all the moms who drive home and all the way back to the hospital every day because you don’t want to leave us alone. 

To all the moms who listen to us complain, because it’s bound to happen.

To all the moms who’ve spoken for us when we’ve been unable to speak.

To all the moms who have put their own health aside because you think that ours is more important.

To all the moms who have watched scary things happen to us but held it together.

To all of the moms who make sure we are prepared with all our medical supplies before we leave the house. 

To all the moms who would take our illnesses from us if they could. 

To all the moms who take us to appointment after appointment. 

To all of the moms who have waited to do something you needed to do while we were inpatient because you wanted to be there when the doctor came. 

To all the moms who stay up worrying about us. 

To all the moms who have celebrated our little victories.

To all the moms who fight alongside us. 

To all the chronic illness moms.

You are a special breed of human. Thank you for your care, your advocacy, your help, and most of all, your love. Happy Mother's Day.

Friday, May 4, 2018

My Oath to Nurses

This upcoming week is Nurse's Week, and I want all of our nurses to know how special they are to us.

I promise I will never forget how hard you work, hours on end, and I don’t hear you complain.

I promise that I will never forget how thankful I am when you advocate for me while I’m stuck in a hospital bed.

I promise that I will always remember that you’ve witnessed some of the hardest things, and keep doing your job with grace.

I promise to try and be patient and understanding if you can’t help me right away. You are overworked and underpaid.

I promise I will appreciate every single warm blanket you give me.

I promise that I will never take for granted the little things you do to make me feel more comfortable.

I promise that I will never forgot the hard nights I had when you were able to spend time in my room talking to me and letting me vent to you.

I promise I will always treat you with respect. You deal with enough ungrateful or senile patients who mistreat you on a weekly basis. I will always say thank you.

I promise that I will remember all the times you made me smile or laugh while it was hard for me to do so.

I promise I will never forget it when you stand up for me. You’re the one who sees me most, and gets to know me best. When you see something going wrong and step in and help, you make me feel like I’m not alone.

I promise to remember that you’re human too, and can have bad days.

I promise to always appreciate the less glamourous things you do as part of your job, and I thank you for making me feel comfortable as you do them. 

I promise to be thankful when you come check up on me, even though I know you’re swamped with work and running around.

I promise I will never forget the years of hard work and commitment you dedicated to getting your degree.

I promise you will always remain heroes in my heart, because your hard work and dedication to making your patients feel comfortable despite incredibly long hours doesn’t go unnoticed.

I promise to shout out into the world the truth about nurses and their importance.

I promise to never forget that nurses are a special breed of human like no other.

Tuesday, May 1, 2018

Do We Have a Misconception About People With Type 2 Diabetes?

Some people with Type 1 Diabetes have some negative feelings toward those with Type 2. I used to be one of those people. 

Here’s where I think this resentment stems from. There is such a stigma surrounding Diabetes being a disease caused by desserts and gluttony. Because it is possible to acquire Type 2 Diabetes with a poor diet and obesity, people with Type 1 don’t want to be associated with that. Understandable. 

However, I recently had the opportunity to sit around a table with six Type 2s. The point of being there was to “relearn” diabetes management. This was a full day session, so we had a lot of time to chat. This is where I learned that the people with Type 2 Diabetes who are dependent on insulin are a lot more like us than we think. 

How did these specific people acquire Type 2? A couple of them were due to natural aging. One was due to poor diet. One had gestational diabetes, then was eventually diagnosed as Type 2. And one was just unlucky and had a large family history. 

We sat. We laughed about relatable things. We compared our methods of receiving insulin. Funny enough, they were all on insulin pumps, while I’m still using old school syringes. 

But most of all, I learned. I learned that people with Type 2 who are on insulin live lives that are almost just like ours. They deal with lows in the middle of the night. They have to choose between injections or a pump. They struggle to keep their BGs in range, just like we do. They get burnout. And if they stopped taking their insulin, they would die, just like we would. So why are some of us shaming them?

Now let’s go back to the group of people I did this session with. Do most of them sound like they did this to themselves? Maybe one? But even he was likely predisposed. Some people are naturally predisposed to obesity, it’s in their genes, and that will increase their risk. They didn’t do anything to cause it, and there’s nothing they could have done to stop it. And now because they are insulin dependent, they have a 24/7 job of keeping themselves alive. Sound familiar?

A lot of people want a name change for Type 1 due to the stigma attached to Type 2 diabetes. I admit, that I am one of those people. I think it would be beneficial to people with Type 1 to be separated from that stigma. 

However, I think that the stigma attached to Type 2 is so wrong. Yes, if you eat nothing but junk for years, you are putting yourself at more of a risk for developing Type 2. And it is true that it is the most common cause of it. However, there are so many other factors that don’t get talked about. One person can eat nothing but junk food their entire life and never develop diabetes. While another can spend their years watching what they eat and exercising, and develop diabetes. 

So who is this article directed toward? My fellow Type 1s. Let’s not have hostility toward those with Type 2. Diabetes affects some of their lives just as much as it impacts ours, and I hope you can see now that many of them did nothing to cause it. And even if they did, why shame them? I hope you can feel for them, because they have to deal with the stigma of people thinking they ate their way to this disease, when that’s not true for a group of them. So next time you encounter someone with Type 2, make sure to remember that you don’t know the circumstances that led to their diagnosis. Know that it isn’t all their fault that we have to deal with this stigma. And know that regardless of their circumstances, the stigma hurts them too. Every day.