The Mini Adventure

This fall I have been working on recovering from the toll that the summer took on me. I have had to spend a lot of time resting, and I have been more homebound than was previously typical for me. Two weeks ago I was itching to get out of the house, but was so tired that I wasn't sure how it could happen. We decided that I should have IV fluids, get some extra rest, and then do what it took to get outside. The IV infusion was just the boost I needed to be able to get out of the house for a day.

The outing was absolutely wonderful. I got to see outside, take pictures through the van windows, see a national monument, and spend the night in a hotel. It was a delightful escape! I had to spend time recovering after we got back home, but it was so worth it.

As we started our drive, William and Adelaide said, "It's The Great Adventure!" I laughed and said, "Oh no! This is The Mini Adventure."

We went to Pipestone National Monument, and it was beautiful! The fall colors were stunning and the air was nice and chilly. My parents have taken William and Adelaide there before, but this was the first time I was able to go and ride on the trail. We skipped the museum because I have seen that before, and I wanted to put my energy toward being outside.

The trip was so fun that I wanted to share it with all of you. Some of you may have already seen a few photos from our trip on Instagram. Here are a few more. I hope you enjoy them!

I had fun watching Will, William, and Adelaide hike to the top of the waterfall.

I sat at the bottom of the falls and waved.

William and Adelaide had fun hiking, and I had so much fun being with them!

While we were at Pipestone National Monument we picked up a 4th Grade Pass for William. Did you know that every 4th grader in the United States can get a free pass for the family for all national parks? It's a great deal! You can learn more at Every Kid in a Park.

I know that many of my readers are disabled, so I also want to share about the Access Pass with you. I wish someone had told me about this 10 years ago! If you are a U.S. citizen and have a significant and permanent disability, you can get a free Access Pass to all national parks. The pass will give you entrance to any national park or federal recreation land, and you can also bring up to 3 other adults in for free with you. Children under 16 are always free. You can learn more about the Access Pass here.

After seeing Pipestone National Monument, we went to a hotel, which was a treat because it let me see 4 different walls. :) I also got to watch the sunset from our hotel room.

What a wonderful trip it was! Thanks for letting me share it with you. If you want to see more pictures from our drive that weekend, you can find them on Instagram.

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Help Save Midodrine

Earlier this month I shared about my fight against gravity. My blood vessels do not constrict like they should when I am sitting or standing. This means the longer I am upright, the more blood I have pooling in the lower half of my body, which causes a lack of proper blood flow to my lungs, heart, and brain. There is an important medication I take each day that helps in my fight against gravity: midodrine. Midodrine works by constricting blood vessels, thus raising blood pressure and helping to prevent blood pooling while upright.

Five years ago the FDA announced that it was going to pull midodrine from the market. The small dysautonomia community came together, along with friends and family, and flooded the FDA with requests to keep midodrine available. There were so many people who spoke up that we froze the comment section of their website for a while! We overwhelmed the FDA and made it known that we needed midodrine to stay on the market. 

Because the response from patients, doctors, family, and friends was so overwhelming, the FDA decided to keep midodrine available for a while longer. They let midodrine stay on the market while tests were conducted to prove that the medication is effective. Those tests have now been completed, and sometime this fall or winter the FDA be making a decision on whether or not to allow midodrine to remain on the market permanently.

If midodrine is removed from the market, it would be devastating for thousands of dysautonomia patients. 

What would this mean for people with dysautonomia who need midodrine? 

• Some people would lose their jobs because they could no longer function at a normal level without midodrine.
• Some would no longer be able to sit long enough to drive, or stand long enough to do grocery shopping.
• Many with dysautonomia would have to go on disability for the first time.
• The ability to care for children and a family would be diminished.
• Those who are students would have a harder time sitting up in class or standing to give a presentation. Some would have to drop out of school.

What would this mean for me personally?

• I am already disabled and primarily homebound, but midodrine increases my quality of life in my home. Life without midodrine would become even harder. 
• I would have to spend even more time lying down, which means that I would have less time to sit upright and help with baking, sit on the sofa and read to my daughter, or sit at the coffee table to help my children with their homework.
• I would have more coat hanger pain in my neck and shoulders. This is caused by blood vessels shutting off blood supply to the less vital muscles in order to conserve blood supply to the brain.
• I would have more brain fog (difficulty concentrating due to lack of adequate blood flow to my brain).
• I would not be able to sit up for as long, making outings in my wheelchair even harder.

Midodrine is needed by thousands of dysautonomia patients. Will you please help us let the FDA know the importance of this medication?

There is an easy way that you can help! Dysautonomia International has written a letter to the FDA, and it has received the approval of their Medical Advisory Board. They are gathering signatures and statements from those who would like to keep midodrine available. If you would like to help, you may sign your name to the letter. You can read and sign the petition to the FDA here.

If you are interested in learning more, Dysautonomia International has a timeline of the history of midodrine and the difficulties with keeping it on the market in recent years.

Thank you in advance to everyone who is willing to sign the petition and help us keep midodrine available for those who need it!

Just Show Up: Q&A with Jill Buteyn and a Giveaway

This summer I read and reviewed Just Show Up by Kara Tippetts and Jill Buteyn. I am thrilled to say that this book is now available in stores! If you are wondering how to show up for a friend who is suffering, this book will be a helpful resource for you.

Today I would like to share Kara and Jill's own words about this book. For those of you who do not know, Kara passed away from cancer earlier this year. She is now in Heaven, so I will be sharing a quote of Kara's from the book.

In Kara's Words:

Jill and I dreamed and talked about writing a book together, one that would try to take the mystery out of walking with one another through suffering. That's the book you have in your hands. We would have liked to write a book that took the uncomfortable or awkward out, but there's no way we could do that and be honest. Because honestly, it's hard. But it's not difficult. You just have to show up. That's not some kind of secret figurative language. We're talking about literally showing up.

There is so much power in showing up, humble power in saying, "I'm here. I may not have the answers, but I'm here." Most often it's those who come without answers or agendas who are the most helpful. Those people have been invaluable to our home. Jill has been one of those people. That's why I wanted her help on this project. She knows what she's writing about. In being a friend to me during this season, she's seen the bad, the ugly, and the horrible. But she's also seen the beautiful. And the beautiful has been worth it. So worth it. - Kara Tippetts, Just Show Up

Here is Jill Buteyn to tell us more about her friendship with Kara and their new book:

Q: You wrote Just Show Up with your late friend Kara Tippetts. Can you tell us about Kara and the circumstances that led you to write this book together?

Kara Tippetts was a grace-filled mother and pastor’s wife who was diagnosed with breast cancer at the age of 36. While fighting cancer, she shared her story with thousands of readers on her blog, Mundane Faithfulness. She also wrote the book The Hardest Peace about her journey and co-authored Just Show Up with me before passing away at the age of 38.

While Kara was blogging, I was writing fiction. We often talked about collaborating on a book. We settled on the subject of walking through suffering together because we could write from both of our perspectives. I learned a lot from watching Kara’s community rally around her, from seeing her friends in action. Of course, as the one suffering, Kara had firsthand knowledge of what works well and what doesn’t. We both hoped the book would take some of the mystery out of showing up for each other and allow people to engage more confidently in community, even during really hard times.

Q: How and when did you learn about Kara’s cancer diagnosis? Did it change your relationship with her?

I actually heard about Kara’s diagnosis when she posted about it on her personal Facebook page. We were friends through school and church, but as I say in the book, our friendship developed more after her diagnosis. She had only been in Colorado for six months at the time. I do remember thinking about our friendship. Where did I fit in all of this? Was I “in”? I decided the answer was yes. I wasn’t going to shy away from Kara because things could get scary or hard. I told her later that choosing her was a conscious choice for me.

Q: Do you think it’s easier to be someone’s friend when times are good?

Certainly there’s a simplicity to friendship when things are good, but at the same time, when is “good”? We all have hard times, and we’re often dealing with tough stuff in different areas of life at the same time. But there’s also beauty that comes in doing the really hard stuff together. When I look back on my time with Kara, on the way she let me and so many others in when she was suffering so much, I see a lot of tears, prayers and pain, but I also see grace and even peace. I see really great friendships formed in a short amount of time. It was beautiful to walk with her, even though it hurt so much. It still hurts. But I would choose her all over again.

Q: You write in Just Show Up that being there for a friend can be as simple as literally just showing up. Why is presence so important during suffering?

Presence is so important in suffering because sometimes that’s really all we have to offer. We don’t have the right words, or there isn’t anything we can do to help. Sometimes it is just about being there. There’s peace and support in being with each other — from both sides. Often it was a comfort for us to be with Kara, even if she was sleeping, and I think she felt that same thing. One time I sat at the hospital with her while she slept. I brought my laptop and just wrote, sitting in the chair. I remember wanting to have something to do so she would feel free to sleep and rest. She opened her eyes and said something about how it gave her comfort that I was there. I could have easily second-guessed offering to sit with her — it wasn’t really necessary. But just being present with each other meant something to both of us.

Q: Could you offer some advice for others on how to move past moments of awkwardness?

Pray, then step out in faith. God will meet you there. Be honest. You could even say to a friend, “I want to help. I don’t want to be the person who disappears because this is awkward or uncomfortable. How can I be there for you? Will you help me by telling me if I’m doing something offensive or don’t have a clue?” I think friendships can grow from this kind of honesty.

Q: When offering help to someone, why is it important to be very specific about how you would like to help them?

It’s far easier for people to accept help when we offer something specific. I used to say to people, “Let me know if you need anything.” And I meant it. But rarely, if ever, did anyone ask me for anything or admit what might help them. However, when I offer a specific, “Hey, I’m at the store, can I pick anything up for you?” or, “I’d love to come by and do a couple loads of laundry this week. What day works?” it easier for the suffering people to decide if and when they need that specific help or how they can tweak it to meet their needs.

The other bonus to offering a specific help is that it gives us the freedom to serve within our gifting. If I’m a kid person, and someone asks me to paint their guest room, that probably won’t bring me the same joy as watching kids. We can find so much joy in helping others, and I think part of that is in doing the things we’re gifted in — not that we don’t ever step beyond that. It’s just a good place to start. I love what I learned about being specific in helping others. It was a light-bulb moment for me. It just makes sense, and yet, I’d never really thought about it before. It’s important because it makes things easier and more comfortable for both sides and takes away the guess work.

You can read more of the interview with Jill here.

Thank you, Kara and Jill, for sharing your lives with us through your blogs and through your books. Thank you for showing us what it looks like to walk through suffering with a friend.

You can connect with Jill on her blog, Facebook, and Twitter.

You can read Kara's writing at Mundane Faithfulness and in her book, The Hardest Peace.

And now for a giveaway! Would you like to read Kara and Jill's new book? David C. Cook will be giving a copy of Just Show Up to one of you! You may enter using the Rafflecopter form below. The winner will be notified by email on Tuesday, October 27.

a Rafflecopter giveaway

Dysautonomia Awareness Month

Photo Credit: DINET

October is Dysautonomia Awareness Month. On October 1, Niagara Falls was lit up in blue for dysautonomia awareness! It is exciting to see more attention given to this condition that is devastating for so many people. We have a long way to go, but it is good that awareness is spreading for dysautonomia.

Image Credit: Reflections of a Bear

Dysautonomia is an umbrella term used to describe the dysfunction of the autonomic nervous system. There are many different types of dysautonomia, and this infographic shows some of the illnesses that fall under the category of dysautonomia.

The autonomic nervous system controls everything in the body that you don't have to think about such as heart rate, blood pressure, circulation, temperature regulation, digestion, sensory perception, energy production, and more. When the autonomic nervous system does not function properly, these processes can become impaired.

One of the most common forms of dysautonomia is POTS. The Mayo Clinic estimates that 1 in every 100 teenagers has POTS. Though many people haven't heard of it, it is actually fairly common. "POTS might be the most common medical condition that no one has ever heard of."

Despite the fact that POTS is common, there is often a long delay between the onset of symptoms and the diagnosis of POTS. A recent survey showed that the average diagnostic delay is 5 years and 11 months. Before receiving an accurate diagnosis, 59% of patients are told that it is "all in their head." Even though POTS is common, 27% of patients had to visit 10 or more doctors before a correct diagnosis was made.

My POTS

I first developed obvious symptoms of POTS when I was 14 years old. I was diagnosed with Neurocardiogenic Syncope (NCS) when I was 15, and the POTS diagnosis came shortly after that. This was in the 1990s when it was very rare to receive an accurate dysautonomia diagnosis so quickly. I am grateful that I had parents who believed me when I said that I was sick, and who did not believe the doctor who said I was making it all up.

Over the years my health has gotten progressively worse. I do still fit the POTS category, but POTS no longer totally describes my dysautonomia. For this reason, my doctors typically say that I have "dysautonomia" as a diagnosis because that covers the broad variety of symptoms I have. Because of the severity of my illness, the progression of symptoms, and the lack of response to treatment, several of my doctors believe that I have a mitochondrial disease as a root cause for my dysautonomia.

When I saw Dr. Cohen several years ago, I asked him if he believed I had a mitochondrial disease, and he said, "Definitely. The question is: can we prove it?" We may never know why I have dysautonomia or why my condition has been progressively getting worse. We may never be able to prove that it is a mitochondrial disease. But, perhaps, with more awareness, research, and advances in testing, we might find an answer one day!

If you want to know more about how POTS and dysautonomia affect me, here are some blog posts that explain more:

• Fighting Against Gravity
• A Day in the Life
• Dysautonomia
• Frequently Asked Questions

For Further Information

If you want to learn more about POTS, here are a couple of good articles:

• POTS Overview
• Postural Orthostatic Tachycardia Syndrome

If you want to learn more about dysautonomia, I recommend visiting:

• www.dinet.org 
• www.dysautonomiainternational.org

Happy Dysautonomia Awareness Month!

They Just Showed Up

Kara and Jill's book, Just Show Up, released this month! In this book, they share about the community that surrounded the Tippetts family when Kara was battling cancer, and they help the reader learn how to walk through suffering with a friend. I had the opportunity to read and review Just Show Up this summer, and it is definitely a book that I recommend.

Today the Mundane Faithfulness community is gathering to share stories of how people have shown up for us in our hard times. Earlier this week I shared how my family and friends from Georgia showed up for me this summer. Today I would like to share how a few friends, both local and far away, have shown up for me in recent months.

One of the first people to reach out to me when my family moved to Minnesota in 2012 was MaryAnne. She just stepped right into my life, not afraid at all to befriend someone with a serious chronic illness. I will be the first one to admit that it is not easy to be friends with someone like me. Those who want to be my friend have to sacrifice of themselves. I can rarely visit friends in their homes; I need them to come to me. If they are sick, I am not able to take care of their children for them, but there are days when I need them to take care of my children for me. It can be awkward to have a friendship that is so unbalanced like that (something that Kara and Jill talk about in their book), but MaryAnne makes the awkwardness easy. She doesn't mind when I have to cancel our visits. She is flexible when I need to change my schedule. She often offers help. As my physical needs have increased in recent months, her offers of help have also increased.

When MaryAnne found out that I was struggling this summer, she offered to watch William and Adelaide on Wednesday mornings so that I could have a break in the middle of the week. It was so helpful to have a morning where I could sleep in a quiet house and catch up on much needed rest.

William and Adelaide loved the days when they got to play with MaryAnne and her daughter, Cecilia. MaryAnne would often take them places like the library, a park, or the bakery. It was such a blessing to have someone take my children out for adventures around town. 

William and Adelaide also enjoyed the mornings when they simply played at MaryAnne's house. There were new toys and games that were fun. Adelaide particularly enjoyed playing dress up with Cecilia!

I'm so grateful for MaryAnne helping us make it through the summer. Life is a little bit easier now that William and Adelaide are in school during the day, but days are still long and hard. MaryAnne has continued to offer help in various ways. What a blessing to have a friend who shows up in the hard days.

In the past month I have also been blessed by friends from far away who showed up through the mail. Several friends and family members have sent cards, and a couple of friends have sent packages. Mail is always fun, but the more homebound and isolated I become, the more I appreciate mail. When I am too exhausted to have a visitor, or when a friend lives too far away, receiving mail is like a giant hug! It is a reminder that I am seen and not forgotten.

My friend, Elizabeth, (who I mentioned on Tuesday), sent a package filled with fun purple things last month. There were fun items, practical items, and a beautiful scarf. There were even a few items for Will, William, and Adelaide. My favorite item was this little notebook.

Elizabeth filled this notebook with Scripture verses. On each page she also wrote "KOKO," which means "keep on keeping on." The notebook has 49 verses total. I am going through this notebook and reading one verse a day. After I finish reading it, I will keep it next to my bed for the especially tired and weak days. This little notebook is small and lightweight, which means I can pick it up to read on a day when my Bible is too big and heavy for me. It will also make it easier to read a Bible verse on the days when I struggle to read because of brain fog.

I have been so blessed by Elizabeth's friendship in recent months. Not only did she come to help this summer, but she has been faithful to encourage me since then. She texts me almost every day! Sometimes it is a simple text saying, "KOKO." Other times she shares a picture or a verse or something that encouraged her. She shows up from far away and encourages me in my daily life.

When I saw this written on the outside of a package, I knew I was in for a treat. The Phillips family, dear friends from Virginia, knew that I was struggling this summer, and they sent this package to encourage me. I don't think I have ever received a pampering package before, so this was absolutely delightful.

I opened the box to find a lovely purple sweater and the most amazing purple throw blanket. I had actually been needing a new throw blanket, and this one will be so soft and cozy this winter.

I began opening the little presents one by one. There were sentimental items, practical items, and items for pampering and comfort. I made it about a third of the way through the package before I had to stop and get tissues to wipe the tears away. When a package like this comes on a very hard day, it is overwhelming!

Do you see that little kitchen soap dish with grapes and a ladybug on it? That was in the Phillip's home when I used to babysit their children years ago. Oh the memories! The hand cream, soap, and bath gel infused loofah smell so wonderful. The eye mask is perfect for resting in my recliner. The purple neck wrap is filled with lavender, and has already been so helpful in easing muscle aches. Oh, I have been pampered and loved well!

Thank you, friends, near and far, who love me in my hard days and show up with help and encouragement. You make life a little easier, and you bring joy to my days.

Who do you know who is suffering and in need of a friend? I encourage you to reach out to her. Show up in the midst of her pain. Whether you are near or far away, you can help in practical and tangible ways. Your encouragement may be just the help she needs to continue to persevere. It is not late or too early to just show up.

You can find many more Just Show Up blog posts in the link up at Mundane Faithfulness today. These are stories that will give ideas for how you can show up for your friend.