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 … Continue reading

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.

IMG_20150128_144354

Style Tips for the Chronically Ill

  • 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 theseIMG_20150114_150605
  • 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! IMG_20150201_162752
  • 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. 

Krohn Conservatory 2014

(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.

20150103_10581820150103_091033

(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.

Checking In: Thankful Thoughts Week 5

IMG_20150106_175612

The last few weeks have been filled with nerve pain, rice packs, my heating pad, and cheesy TV shows. I went to my nurse practitioner yesterday and she started me on a steroid and a muscle relaxer to help with the pain. I haven’t had much energy to write, so for now, a short entry will have to do.

IMG_20150109_141826

When I am in pain, I try to focus even more on the goodness in my life. If I don’t spend time doing that, things are much more difficult. So here’s my gratitude list for 2015 thus far:

  • I am grateful for sunshine. Even on the coldest days, I can open my blinds and enjoy the beauty of bright days.
  • I am grateful for rice packs and heating pads. I don’t want to consider how I’d feel without those things.
  • I am grateful for decaf coffee. I can usually drink it, even if I’m a bit shaky. And it brings so much happiness to my day.
  • I am grateful for essential oils, especially OnGuard and Oregano. I am convinced that I would have caught a yucky cold if I hadn’t been vigilant about using them during the holidays.
  • I am grateful that I am home. Yes, I am in pain. And it’s no fun. But I am at home, with my husband, my cats, and heated blankets, not in a hospital. And I cannot take that for granted.

IMG_20150110_180653

No matter what you’re dealing with today, please look for the little blessings in your life. I promise it will give you a fresh perspective!

A Letter to the Newly Diagnosed

1419458420891Below is a letter written for people newly diagnosed with postural orthostatic tachycardia syndrome (POTS). It’s also a great tool for loved ones who are interested in understanding life with an illness.

Hello,

I know that things are scary right now. It is life-changing to be diagnosed with a chronic illness, and it takes a while to process the news. To be honest with you, I am still learning to accept my diagnosis. But there is always hope, and there is goodness to be found in even our darkest times.

My goal in writing this letter is to share what I’ve learned with you. I am not a medical expert, so please consult with your medical team before making any changes to your treatment. I am dividing up this letter by topic to make it easier to read in case you have “brain fog” or trouble concentrating.

My story: POTS can be triggered by a trauma or illness. I got the flu in January 2014. After that, I never really got better. I was able to return to work from mid-January til March (with a lot of sick days), but things got pretty bad for me. I worked at a residential treatment center for teenagers with mental illness. Most of the nursing staff could tell I was not myself. I lost 10 pounds in about a month, I was always exhausted, I had memory issues, my cognition/decision-making skills were impaired (“brain fog”), and I was very irritable. I craved salty foods all the time. I was also sick with one cold or another that whole time. One night, I was working, and I made a simple mistake that was out of character for me. My co-workers made me take a break. Once I got alone in a conference room, I started sobbing. I just broke down crying. I was overwhelmed and felt awful. I let my supervisor know that I couldn’t stay for the rest of my shift. She’s an RN, and she knew I was unwell, so she graciously let me go home. I was never able to return to work. It has been heart-wrenching for me. Weeks of sick leave turned into months, and then my short term disability was over. I was “let go” due to benefits running out. If I am well enough to work in the next few months, they said they would be willing to hire me back. Right now, I just don’t think that’s realistic for me.
I was (mostly) bed-bound for a few months. I was exhausted all the time and I could barely keep my eyes open. I couldn’t have very long conversations because I would run out of breath and experience chest pain when I spoke. All I was able to do was watch TV, eat, and sleep. I struggled to shower because standing and lifting my hands above my head was painful. I used an ice pack on my chest, but I couldn’t get the pain to go away. I didn’t know that a high heart rate was causing the chest pain because my doctors never looked closely at that part of my vitals. Once they saw my heart was anatomically healthy, they dismissed my chest pain.
I was informally diagnosed with POTS in April 2014. Before that, I had a terrible ER visit. I’ll spare you the details, but I was dismissed as overly anxious and I felt belittled by the staff that treated me. Thankfully, my nurse practitioner saw was determined to help. I went through a battery of tests, which took a good amount of time. I had a sleep study and a narcolepsy test done to see if I had a sleep disorder, but nothing but insomnia was found. I had a few chest x-rays, blood work, and more EKGs done. Finally she did a “poor man’s tilt table test” out of desperation. She took my vitals laying down for 3 minutes, then sitting for 3 minutes, then standing for 3 min. My heart rate went from 95 sitting to 150 standing, and my blood pressure was low. She referred me to a neurologist and he did a normal tilt table test to confirm the POTS. I became tachycardic very quickly after being moved upright. I actually had to end the test early because I was afraid I’d pass out.  My neurologist also did an MRI of my head/spine and I had an event monitor for 30 days.
Doctors and communication: When my symptoms began, I had a family doctor who didn’t believe that I had anything unusual going on.  I’d dealt with fatigue and anemia for years, but she just didn’t believe that a healthy-looking 20-something could be ill. I was shuffled around her practice, from doctor to doctor, since she was rarely available. I decided I needed to see someone else. I talked to a few friends about their doctors, and I started going to a local nurse practitioner.
It’s really important to find a medical provider that you trust. My NP has never doubted that I know my body better than anyone else. She listens to me and takes me seriously. She saw my rapid decline first-hand and she trusts that I will be honest with her. Before I visit with any medical professional, I make a list of my most troubling symptoms and my top concerns. I take the list with me since I tend to easily forget things. I have found that the more specific I can be, the better. I try to specify when certain symptoms began, if there’s anything that triggers them, the intensity, etc. I also keep a log of my blood pressure, temperature, heart rate, and what I was doing before I taking my vitals. At first, I took a reading every day. I varied the time of day and activity so that my doctors would have some variety. Now I take a reading every few days, or whenever I am symptomatic. I record all of it on a sheet in a binder.
After a few terrible Urgent Care and ER visits, I have developed a system. I have “Medical Preferences and History” document saved on my computer that has all of my basic information to give to medical staff in case of emergency. It makes it much easier to have it on paper so that I don’t have to remember everything in a crisis. I also have an accordion folder that has separate sections for medical records, medical bills, insurance statements, work disability paper work, etc. I take the accordion folder with me to every appointment and I keep my “Medical Preferences” document in the front of the folder. I also have a keep a copy of a “Medical Professionals Guide to POTS” in the folder to give to medical staff unfamiliar with my condition. Here’s the website for helpful handouts:  http://www.potsuk.org/download_pots_leaflets
Sodium and Fluids: I drink about 64oz of Gatorade or Nuun drinks a day, and I also drink about 36-40oz of water. That’s a total of about 100oz/day. I had an app on my phone to track my fluid intake until I got used to it. It’s a lot to drink, and I go to the bathroom a lot. I also take 2-4 Thermotabs a day. They are an over-the-counter sodium/potassium supplement. I order mine online. Taking the Thermotabs helps me get enough sodium without over-salting my food.
Driving: I don’t do a lot of driving these days. For a while, my neurologist limited my driving because I was dealing with feeling lightheaded and dizzy most of the time. I also deal with brain fog, which impairs my ability to make quick decisions. Right now, I drive short distances every once in a while. I make sure to plan ahead and hydrate a lot the day beforehand, and I don’t drive if I feel unsteady. I have to ask for help to get to and from a lot of my appointments. My goal for 2015 is to be able to drive 10-15 minutes on a regular basis.
I hope that I’ve been able to help you as you start the journey of living with POTS. Please let me know if you have any questions about managing this illness. I am always happy to share what I’ve learned to help other people.
Sincerely,
Danielle
(Just another POTS patient)

Upcoming Dysautonomia Webinar

Dear readers,

I have a form of dysautonomia called Postural Orthostatic Tachycardia Syndrome (POTS). I’ve benefited greatly from medication and physical therapy, but I am always looking for more ways to help myself manage my illness.  I first met Ashlie through her blog when I won a contest. I received a 5mL bottle of Wild Orange essential oil and Ashlie sent me a few other samples for managing POTS symptoms. Ashlie also has dysautonomia and she’s spent time learning which oils help her most. Thanks to her, I found oils to help with my abdominal pain, nerve pain, and anxiety. You can read more about how I use essential oils here. Or you can comment with questions for me. I’d be happy to share what I’ve learned with you.

On December 16, Ashlie is leading a webinar about managing dysautomia symptoms. I’ll be attending, and I want to share the opportunity! I encourage you to consider learning from Ashlie. She has a heart of gold, and she truly wants to help people live healthier lives. Click the link below to read more about the webinar.

https://attendee.gotowebinar.com/register/4742231396781907202

To learn more about doTerra essential oils, click here or attend the webinar on December 16!

Love,

Danielle

Thankful Thoughts, Week 3

We just finished up the Thanksgiving season in the US. I had a memorable, wonderful Thanksgiving! I hope you did too. I firmly believe that gratitude is important to practice year-round, and I encourage you to take some time to make a gratitude list of your own. There is no “wrong” way to make a list of what you are thankful for in your life, simply out some paper and start writing.

I’ve made some great memories this week with family members, and I am thankful for the moments that make my life beautiful. Here is my gratitude list:

Rupsis Farkle game 2014

  • My husband’s family made a 4 hour drive to celebrate Thanksgiving with us in Indiana. They came full of joy and energy, ready to help in an way they could. I directed some of the preparation, but other people made the meal. I was able to listen to my body and rest when needed (which is difficult for me, especially when I am hosting people in my home). We played a game of Farkle, ate lots of pie, and had a great time!
  • I saw my nurse practitioner on Friday because I was having terrible pain on my right side. She was able to fit me in quickly and she even stayed late to help me. I am grateful that she believes I know my body best and that she trusts me to be honest. My neck, back, arm and leg alternated between being painful and numb, which had never happened to me before. I was somewhat scared because it was so unrelated to my typical symptoms. My NP found that I have a pinched nerve, likely due to muscle strain in physical therapy. It should heal in the next few days, but right now I am focused on taking pain relief medication and resting. I am glad that I was able to get an answer before the weekend, because it would have been much more difficult to deal with the pain without guidance from my NP.

10805704_10152380366610755_8055679038872681681_n

  • My sister-in-law, her husband, and my nephew came to visit us during their Thanksgiving travels. I adore my nephew, but I haven’t been able to see him much because he lives in Illinois, and I can’t travel that far right now. S and I got him a small gift, and we had so much fun opening it with him! My pain and POTS symptoms were manageable during the visit, and I was tremendously grateful.

In this holiday season, I encourage you to take a moment to reflect on the joy in your life. I recognize that there are troublesome things happening everywhere, but I think the best way to face them is to look for goodness.

I have new ideas that I’ll be bringing to the blog later this week, so stay tuned! And please let me know about the goodness in your life 🙂

Quiet Strength

PhotoGrid_1416776462437

My favorite television shows include passionate, strong female characters. I enjoy watching the shows because they convey that women can accomplish pretty much anything. And I love that. Oftentimes, the characters barrel into a room during a crisis and boldly tell other people why their cause is important. These women solve problems with their strong convictions and unwavering determination. When I watch these shows, I imagine myself as one of the heroines. I want to solve injustices as quickly as these women, even though I know most problems worth solving take much more than just a passionate speech.

For years, I wished to become someone I would consider courageous. I wanted to be able to convey my convictions by using my words. I hoped that I could get respect by following the formula for strength that I’d seen in television shows. But over the past few weeks, I’ve had a revelation: There is more than one way to be strong, and words alone rarely solve problems. True character is built when we choose goodness over and over again. I do not stride into rooms full of people ready to share my life-changing agenda. But I do have a different kind of strength.

My strength is not particularly bold, and it may not be noticed by the casual observer. But it is still there. Try as I might, I am incapable of looking intimidating–I am just too friendly. However, I have the quiet strength that comes from choosing hope, even when things look beyond repair. I know how to sit next to a friend in tears, understanding that my presence means more any platitudes I could recite. I can bake cookies with trembling hands because I want to show a loved one that I am grateful for their presence in my life. I understand how to listen to a long-winded stranger share his opinions because I know what it is like to need someone to hear me. I have walked through dark places and I’ve made it into the light. These are the things that make me strong. These are the things that allow me to live with happiness, even while dealing with chronic illness.

I don’t think we celebrate quiet strength enough. It is tough to consistently choose love over fear, and it takes strength to live with compassion. I am guilty of not recognizing the courage it takes to live with grace and kindness, but I want to change that. Quiet strength often goes unnoticed because it becomes deeply ingrained into a person’s character– it is part of them. Still, we need to acknowledge those people in our lives who show quiet strength.  They deserve to be celebrated. It is just as noteworthy to make daily sacrifices out of love as it is to show one large act of bravery.

Today, I choose to embrace my quiet strength, and I encourage you to do the same. I let go of the idea that power and strength are the same. I remind myself that I do not need to make powerful speeches in order to change the world around me. I choose to show love. I look for hope when things seem grim. And I am grateful for the women who have shown me the power of quiet strength, because they have impacted my life more than the heroines on television.

Beauty in the Ordinary, Thankful Thoughts– Week 2

This past week has been full of beautiful moments. My illness has cooperated with my plans more than usual, so I’ve been able to do more outside of the house. I’ve gotten to spend time with dear friends, and it’s been glorious. Practicing gratitude helps me remember that sacred moments happen as we go through the motions of “normal” living. There are not trumpets that start playing right before a precious memory is formed and there aren’t announcers to let us know that something special is coming. We have to look for those moments ourselves, and the more we look for them, the more beauty we see.

There is a quote I’ve been ruminating over this past week. It’s one of my favorite reminders to look for goodness all around me, even in the ordinary moments.

The ordinary acts we practice every day at home are of more importance to the soul than their simplicity might suggest. -Thomas Moore

Our routines and chores can be looked at a few different ways. They can be seen as necessary tasks that must be completed before “more meaningful” things can be done, or we can look for the goodness in time we spend doing them. We can spend that time being grateful for the house we need to clean and the clothing that needs to be washed. I’ve seen what life can be like for people who are in need of clothing and housing, and it is tough to go without. I am not suggesting guilt-tripping ourselves when we become bored doing a task for the hundredth time, but I am encouraging us all to look for opportunities to be grateful in the little moments. Because there is meaning in folding laundry for family members, in making the bed, and in doing the dishes. And there is beauty in all of the little moments that add together to make a life. We do not need to look for grand, perfect moments because there is so much goodness in the imperfect, small ones.

Here are a few of the things I am thankful for this week. I hope you take the time to reflect on the goodness that can be found in the ordinary parts of life.

  • I went to the annual Christmas parade for my city last night. It was cold, so I bundled up in my transport chair and drank hot chocolate with friends as we watched our neighbors kick off the holiday season. I enjoyed seeing children wave from their floats with smiles on their faces. I looked around and saw dozens of people around me supporting the good things that happen in our city, despite the cold weather, and it was wonderful.

IMG_20141110_210749

  • My husband went out and bought a new cabinet for the upstairs bathroom, and our sweet cat Lily Rose watched him put it together. She spent at least an hour watching his every move and “supervising” him while I laid on the floor because of a POTS flare. Lily Rose has a pretty short attention span, so it was surprising to see her so invested in building a cabinet. The cat was adorable, and even from the floor, I was proud of me kind husband who works hard to make our home even better.

IMG_20141114_133432

  • I have a wonderful friend who has visited me at home when I have not been well enough to go out. This week, we were able to go out to coffee at Starbucks! It was so much fun for both of us. I took a picture of myself (above) before leaving to document the occasion.

Please take some time today to consider the beauty and goodness that can be found in the ordinary parts of your life. There is always something to be grateful for in our lives, even in the tough moments.