If I Could March

I am at home today. It’s the day of Women’s March on Washington and in my heart, I am there. My illnesses prevent me from being able to take part in those activities, but I still want to do something. So I am choosing share where my mind is today.

If I could march, I would, because I can’t be silent. I can’t ignore his lewd comments about women or excuse them as “locker room banter.” That type of talk is unacceptable. It is disrespectful and derogatory. I want a president who has the best interest of citizens in mind, and his comments show me that he does not value women for anything but their bodies. If he doesn’t value who I am, how can I trust him to protect me or my rights? I am more than my body. I have a mind and a soul. And to feel as though a president does not care about that is scary for me. I don’t need politicians to make decisions that I always agree with, but I do want to know that they are doing what they think will benefit or protect me. I can respect someone who makes decisions contrary to my beliefs, if he or she has shown that they value the people affected by their decisions.

If I could march, I would, because the Affordable Care Act protects me from being refused insurance coverage due to my pre-existing conditions. Living with chronic illnesses is difficult and expensive, but without insurance, things would be almost insurmountable. I depend on that protection. In addition, I think health care should be reasonable and accessible for everyone. I am not confident that will be the case if the ACA is repealed, especially since there is currently no plan to take its place.

If I could march, I would, because I believe that everyone deserves to be treated with dignity and respect. I believe that religious freedom is important, even when someone’s beliefs are different from mine. I believe in LGBTQ+ equality. I believe that while civil rights have improved in this country, there is still a long way to go, and I want to be a part of positive change.

I would march for 100 different reasons, but none of them would be hate. I cannot allow myself to hate President Trump, because all it would do is make me bitter. If I hate him, he wins because he’s in control of my emotions. I want more than that for myself and for the people I love. Instead, I want President Trump to good things for the United States. I want him to succeed in making this country an even better place. Still, I am afraid of what happen if he keeps his campaign promises. I am afraid of that kind of success. I am afraid for my friends of color, for my lesbian and gay loved ones, and for myself, as a disabled woman.

So I would march, if I could, because I believe in that love is stronger than hate. I believe that instead of shirking back in fear, I can stand up for the vulnerable, for the misunderstood, and for myself.

 

 

 

 

 

 

Keep Fumbling Through

On the path through life, there are sections that are full of beauty and opportunity, and others that seem to hold one disappointment after another. I am currently facing the latter. And to be honest, I hate it. The non-stop …

Continuing My Fight

The past two years of illness have been overwhelming, and I think I need to start being more transparent about the toll it’s taken on me. It’s difficult to be thrust into the world of constant doctor’s visits, chronic pain, …

Why We Need Community

Lately, I’ve been reflecting on my need for community. And the more I think about it, the more I realize that life is meant to be shared. We need other people. I don’t believe that walking through life alone leads to …

A New Diagnosis: Chronic Lyme Disease

Flowers from my wonderful friend Diane and a few of my Lyme treatment supplements.

It’s been a long time since I last wrote on my blog. The past few months have been packed with new symptoms, a new diagnosis, and the craziness of life in general. I’ve just needed some time to reflect on my own. But now I am back. Thank you for reading.

I was diagnosed with Late Stage/Chronic Lyme Disease about a month ago. If you’d like to know more about my illness, check out LymeDisease.org. I am still coming to terms with my newest diagnosis. I think everyone copes with difficult news in their own way. For me, it’s been a mix of feeling numb, crying tears that won’t stop coming, and moments of normalcy, even happiness. Many people have asked me if I feel relief now that I have a diagnosis that explains the symptoms that aren’t related to POTS. To be honest, I haven’t felt much relief. Lyme disease is widely misunderstood, especially once it’s reached the chronic stage. It’s not easily treated and the diagnosis alone comes with a lot of unknowns. It’s not comforting to be told that I still have a long road ahead of me, full of tough days and treatments.

Don’t get me wrong, I am still determined to fight for my health. But this journey will not be straightforward or simple and I hate that. I hate that this is happening. Because even after a year and a half of disabling health issues, this still doesn’t feel normal to me. I don’t think it ever will.

Please believe me when I say that I don’t share my experience to force sympathy or sadness. I do it because I think honesty is important. And I know that it’s much healthier to admit I am struggling than it is to pretend I am fine. Some seasons of life are tough, and I think it’s a very holy thing to acknowledge that. Life still has beauty and purpose on our worst days. As I’ve said before, there is always goodness to be found. That truth doesn’t change when life is hard. In fact, I think it becomes even more important to look for goodness during dark times. It’s there, even if it takes us a while to realize it.

So today I will keep choosing hope over fear. I won’t allow Lyme disease to steal my joy, gratitude, kindness, or love.  I will give myself permission be sad or angry or numb, but I won’t stay that way for too long. I will fight this illness with Netflix marathons, long talks with dear friends, hugs, cat cuddles, and coffee. And I will remain determined to make this world a better place, even if that looks different that I’d expected.

Shining is always costly. Light comes only at the cost of that which produces it. An unlit candle does no shining. Burning must come before shining. We cannot be of great use to others without cost to ourselves. Burning suggests suffering. We shrink from pain.

We are apt to feel that we are doing the greatest good in the world when we are strong, and able for active duty, and when the heart and hands are full of kindly service.

When we are called aside and can only suffer; when we are sick; when we are consumed with pain; when all our activities have been dropped, we feel that we are no longer of use, that we are not doing anything.

But, if we are patient and submissive, it is almost certain that we are a greater blessing to the world in our time of suffering and pain than we were in the days when we thought we were doing the most of our work. We are burning now, and shining because we are burning.
-Streams in the Desert by L.B. Cowman

Kindness is Best

One of the best pieces of marriage advice I’ve ever received came from an unmarried friend at my bridal shower. She shared a quote with me that has popped into my head countless times over the past few years. Here it is:

That piece of advice isn’t only helpful in the context of marriage. I’ve used it when helping clients at work, navigating friendships, and talking to complete strangers. And believe me, following these wise words has saved me a lot of grief though I’m still learning how to apply them.

Today I made the mistake of entering into a heated conversation in social media. You see, I live in Indiana, and our state is dealing with some sensitive issues right now. I summarized the basics of my viewpoint in a few sentences, typed them out, and felt satisfied. I had no intention of having a back-and-forth conversation with someone I barely know; I just wanted to share a perspective that hadn’t yet been considered. But I was soon asked my opinion on a certain aspect of the issue, and I decided to respond.

I crafted my response cautiously, knowing that the person who had asked my opinion was on the other side of the fence. And while writing, I was reminded of Anne Lamott’s wise words. I remembered that I was interacting with a person, no matter how far removed he seemed. And so I decided that there was no reason to argue–neither of us would change our minds based on an internet conversation. I believe that there are times to stand up and argue for justice, but today’s interaction did not meet that criteria. Our small, weird, impersonal conversation via social media had the capacity for only one thing: a yucky argument. I told him that I while I stand by what I said, I didn’t think we needed to agree. I respected his point of view, knowing that his opinion doesn’t invalidate my truth. I chose to walk away instead of engaging in the argument because I knew that a heated conversation in that context would do more harm than good.

I’ve followed Anne Lamott’s sage advice, and time after time, it’s helped me stay true to my truth in the heat of the moment. I admit that I often feel frustrated by what other people say. Sometimes my blood boils and I have to remind myself that I’ve chosen a set of values that is not based on rightness, but love. I’ve chosen to value kindness, compassion, and empathy over being understood.  And let me tell you, sometimes it’s terribly humbling. It’s not always fun or easy, but it’s what I’ve chosen.

So today I invite you to remember that you do not have to prove yourself. You matter. Your thoughts, beliefs, and emotions matter. You do not need to hurt someone else to make your voice heard. So please be kind. Choose your words carefully, because you never know who may be affected by them.

Life is hard. But it’s still good.

The life I have now is not what I’d imagined for myself. I don’t use my college education or my job skills very often. I am not as independent as I’d like, and my world feels small much of the time. It’s tough to grapple with all of the ways my life has changed since becoming ill, and I certainly don’t have this “chronic illness” thing figured out. My time is taken up by doctor’s visits, physical therapy appointments and calls to the insurance company. And I will be the first to admit that none of this was on my bucket list.

Yes, my life is hard; yours probably is too. But my life is also full of goodness that I wouldn’t have found on my own. Sometimes life takes us to places we’d never choose. It can take a while to accept that things are going differently than we’d hoped, and that’s okay. Life isn’t a fairy tale, and no matter how hard we try, we can’t control everything in our lives. If you need to cry, scream, or spend the day in bed to cope with the hard parts of your life, I think that’s fine. Allow yourself to feel the pain and grieve for the losses you’ve experienced. But once you’ve done that, please keep going. Don’t stay in that dark place for too long, because you have a life to live. You have a purpose, even when you have no idea what it is. I know it’s not easy, but believe me, even with the grey cloud of illness looming over me, I still have a good life. It’s not what I’d pictured for myself– it’s not even the life I wanted, but I am still so very grateful for it. I have a kind husband, sweet cats, caring friends, and loving family members. And my illness can’t take any of that away from me. Even on my worst days, I have joy and I know there is hope. It took me a long time to get to where I am, but it was worth all of the work.

If you’re going through a tough time right now, please know that you are not alone. Many of us do not have the lives we’d expected, and I don’t think anyone has it all together. We all have unanswered questions, deep frustrations, and regrets. But we don’t have to let those things define us. Instead, we can choose to see the beauty in our lives. We can choose to celebrate small victories and special moments. We can acknowledge that, even on our worst days, we are still worth loving.

I understand that choosing to look for the goodness in our lives does not take all of the pain away. I know that some things are unfair and unjust, and that bothers me. Still, I am a firm believer that celebrating the goodness in our lives can keep us from being overwhelmed by the difficulties we face. And I think we all need help keeping a balanced perspective, especially when life is hard.

Today I choose to keep going. I choose to look past my frustrations and find something to celebrate. And I hope you’ll do the same.

---

The dysautonomia community recently lost a seventeen-year-old young lady to suicide. Her illness overwhelmed her and she didn’t think she could keep fighting. If you find yourself feeling isolated, lonely, and depressed, please reach out to someone. You deserve joy. You deserve hope. And no matter what, you are worth loving. 

Here’s a few resources if you need a place to start: 

NAMI: http://www.nami.org/Find-Support

Lifeline suicide prevention: http://www.suicidepreventionlifeline.org/

Anxiety and Depression Association of America: http://treatment.adaa.org/

Family Visit: Thankful Thoughts- Week 6

I spend a lot of time alone. My illness limits my ability to get out of the house, which means that I am often home by myself. And much of the time, that’s OK. I’ve learned to take advantage of the time spent by myself, when I have the freedom to make my own plan for the day.

Still, I thrive the most when I can be with other people. There’s a big part of me that needs to interact, encourage, and “just be” with the people I love. I am a people person– there’s no doubt about that. When I was able to work, I chose jobs that focused on building relationships with people and helping them improve their lives. I feel most alive when I am invested in purposeful relationships. 

This week I’ve spent time in Illinois with my husband’s family. We don’t have extravagant plans, and I like that. There’s very little pressure to do anything in particular, which allows me to do whatever is realistic. After spending most of my days alone (until S gets home from work), I am thrilled to spend my days with loved ones for a while. It surprises me what all I’ve missed as I’ve adjusted to spending most of my day by myself. This week, I am soaking in each conversation and enjoying every shared meal. I’m enjoying cookies baked by my 11 year old brother-in-law, sipping on peppermint tea from my sister-in-law, and savoring the Orange Julius and latte made especially for me. I am grateful for the time spent teaching my younger sister-in-law how to knit on the loom, trips outside of the house (despite the cold weather), and for one-on-one time with some of my husband’s siblings.

I think it’s important to acknowledge the good things in our lives and to soak in the beauty that is found in building relationships. None of us can make it through life alone. We need each other, even if it’s difficult to admit sometimes. We need hugs and smiles and laughter. We need loved ones to comfort us when we cry and celebrate with us when we succeed.

So today I am challenging myself to look for reasons to be grateful. I am asking for help when I need it, and I am looking for the goodness around me, even when I am in physical pain. Because the goodness is there; it’s always there. I just need to choose to embrace it and enjoy the time I have with people I love.

Style Tips for the Chronically Ill

I want to share some practical style tips for looking good, even when you feel less than your best. Being sick can be difficult and exhausting. For most people, illness means messy hair, ratty sweatpants, and an overall feeling of yuckiness. After all, when we feel terrible, it’s tough to even consider putting our limited energy into showering or getting dressed in “real clothes.”

But in my journey with chronic illness, I’ve found that my self-esteem takes a dip when I look the way I feel. There is not a day that goes by that I feel 100%. Sometimes I daydream about what I would do if I had 24 hours of feeling “normal” again. But I don’t want to look as pale, bone-tired and discouraged as I feel. So I made the decision to change my routine and put some effort into my appearance again. Yes, there are some days I spend in my pajamas, but that’s not typical for me anymore. I almost always shower, fix my hair, and put together an outfit. I don’t do it to impress anyone or to live up to a particular beauty standard; I do it because it helps me feel more human. When I like the way I look, it’s easier for me to engage in the day and feel motivated to do the best I can with what I’ve been given.

• Choose functional clothing. You can look and feel good while still considering your needs. Embrace your personal style and get creative! For example, if you are overly sensitive to certain textures or fabrics, don’t buy them. You’ll look and feel much better in clothing that makes your life better, not more complicated. I wear pants with loose, elastic waist bands most of the time because jeans are not comfortable for me. I’ve taken the time to find fun, printed pants for myself, similar to these. 
• Wear layers. Symptoms aren’t always predictable, and neither is the weather. I suggest being prepared by incorporating the use of layers into your wardrobe. I often wear a fleece jacket, cardigan, or loose sweater over a tank top or blouse because my body doesn’t regulate temperature very well. Sometimes I even wear long johns under my pants! Since I can go from sweating to freezing in a matter of minutes, I keep that in mind when I choose my clothing. I tend to wear solid colored outer layers that I can easily mix and match them with my tops, which allows me to have more outfit combinations to choose from.
• Wear clothing that doesn’t wrinkle easily. Let’s be honest, ironing is a time-consuming chore and it requires a good deal of energy. Those of us with chronic illness have to carefully plan what we do, and eliminating certain chores makes life easier. When you’re looking for new clothing, look at the tag that outlines how to care for the item. If it requires dry cleaning, regular ironing, or special washing, consider putting it back on the rack. If you fall in love with the item, invest in a clothing steamer, or at least some Downy Wrinkle Releaser Spray. In my opinion, a clothing steamer makes it easier to target and eliminate clothing wrinkles instead of ironing the entire item. And Downy Wrinkle Releaser Spray gets out set-in wrinkles like a charm! 
  
• Liven things up with accessories. When I want to add something special to an outfit, I put on a scarf, nail polish, statement jewelry, or some other touch of color. I instantly feel a bit happier when I do it. I promise that the little bit of extra effort goes a long way in feeling brighter and more put-together. Also think about adding some bright colors to your surroundings, especially if you spend a lot of time at home.

Living with chronic illness is difficult; there’s no sugar-coating it. But taking some time each day to focus on yourself helps you feel a bit better and more in-control of your day. And I think that makes a big difference!

(To read about 10 Must-Haves for Living with Chronic Illness, click here.)

Being Present

My illness has taught me to soak in beautiful moments and to be grateful that I have so much goodness in my life. The 2014 holiday season was one of my favorite so far. That may seem odd, since it’s my first holiday season with a chronic illness, but I assure you it’s the truth. I was fully present while celebrating with loved ones. I didn’t spend much time worrying about what I should do or how things could be better. Instead, I focused on the beauty to be found in my messy, imperfect life.

There is a peace that comes with letting go of the future I’d expected. I have to do a bit of “letting go” every day.  During the holidays, I was reminded that it’s not easy to need a wheelchair to make it through a holiday display. But once I accepted my new reality, I could focus on having fun instead of being upset that I depend on my chair. There are dozens of moments like that each day for me as I learn to live a full life with an illness. And each of those moments present me with the choice to either think about how things could be or to be grateful for the goodness to be found in my new way of life. 

(Touring the holiday show at a local conservatory with my mom)

I believe that it’s all about perspective. The way I approach life affects what I see. When I think about the time spent with my family as precious and important, it’s much more difficult to spend that time angry about the things I can’t do with them because of my illness. I’m too busy paying attention to someone’s funny story or hugging a loved one to think about what could be. I am present in the moment, even though there are new limitations for me. I refuse to spend unnecessary time focusing on my frustrations, because doing that causes me to miss out on the relationships around me.

I was able to make it through two different trips away from home over the holidays, which is great progress for me! Thanks to my mom and my husband, both of the trips went as well as I could hope. I am currently unable to drive, but I was still able to spend some great time with family. One of the brightest parts of my holiday season was the time I spent with my nephew. I got to cuddle with him, rock him to sleep, and play with him. It was delightful! S and I soaked up all the time we could get with the little guy.

(Spending time with our nephew was wonderful!)

I realize the excitement of the new year has just about worn off, but I’d like to encourage you to make a 2015 goal for yourself. As for me, I’ll be focusing on being present for the beautiful moments that make up my messy, imperfect life.