Life is hard. But it’s still good.

Blog pic-- Life is hardThe 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/

Advertisements

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.

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)

Do Something Good

TV stock photo

My heart breaks every time I learn about injustice. I am a deeply empathetic person– it’s just the way I am wired. I can see that people all over the country are experiencing pain and feeling misunderstood. There is a lot of hurt these days, and it seems to keep spreading. As I’ve watched the news this week, I’ve felt moved to make a difference, so I’ve been thinking about what I can do to bring positive change in my community. I’ll have to be creative, since my illness causes me to spend a lot of time at home, but I am determined to bring a bit of light into the darkness we face.

I don’t understand why people think that hostility and hatred will bring change. It won’t bring understanding or grace; all it can bring is more hurt. When I watch the news and listen to the people around me, I don’t think we need any more pain. We need kindness, we need forgiveness, and we need to feel heard. We need to know we’re not alone, even when things get messy. Deep down, we have a lot in common.

I know that injustice, racism, and inequality are complex issues, and I still have a lot of learning to do. In the meantime, I’d like to offer a few ideas for bringing hope into our communities.

  • Focus on listening to others. Instead of spending your time thinking about the “perfect response” during a conversation, listen to the other person. You’ll be surprised what you learn when you take the time to focus on someone else’s need to be heard.
  • Look for volunteer opportunities. If you want to make a difference in your community, you may need to do some groundwork. Most charities and community organizations are stretched pretty thin, so they don’t have a lot of time for recruitment. If you care about people experiencing poverty, look into the food pantries in your area. Consider donating food to them every month or set up a time to talk with the director about helping distribute food. If you want to help children, see if there is a chapter of Big Brothers Big Sisters nearby. You need to add your volunteer work to your schedule so that it becomes a part of your life. Otherwise, it’s easy to put it off.
  • Get to know your neighbors. These days, we often connect online, and we sometimes forget about the people who live next door. It can be a bit awkward to say hello to someone for the first time, but most people will say hello in return. Think about baking some Christmas cookies as a friendly gesture– it’s a great way to break the ice. This time of year can be tough, so think about ways to be kind to the people who live nearby.
  • Collect items for a worthy cause. Hygiene items are in high demand for people with little or no income. Consider collecting toiletries from friends and family to donate to a local charity. Or put together baskets of feminine care products, hair brushes, lotion, hair spray, etc. for a domestic violence shelter. Socks are also a much-needed item at shelters. Ask loved ones to give a pack of new socks with your holiday gift and then bring the collection to local homeless shelter. You can also call specific organizations to see what they need most so that your collection can be especially helpful.

I encourage you to set aside time this week to do something positive for someone else.

Be the change you wish to see in the world. -Gandhi

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 🙂