10 Must-Haves for Living with Chronic Illness

I’ve read advice from plenty of people with chronic illnesses, and I’ve learned some helpful tips from them. However, there are a few things that I would like to share that have truly helped me over the past 6+ months. I am featuring items that aren’t typically brought up because they are not medical in nature. They’ve made my journey with chronic much better and I want to share them with you. Please not that I am an official endorser of any products and I am not being compensated for recommending them. I just like these items!

Grocery Shopping Oct 2014

But first, let me share one of my victories this week. I was able to drive myself to the grocery store and go shopping by myself for the first time in over six months! This is huge for me. My driving has been fairly restricted due to motion sensitivity and other symptoms, but I’ve had a few good days lately when I was safe to drive. And I made it through Aldi (a fairly small store) by leaning on the cart and walking slowly. I took a photo because it was such a milestone for me.

Here are my 10 must-haves for living with chronic illness (in no particular order):

Contigo Mug Danielle 2014

1. Contigo brand mugs

These mugs are specifically made to be impossible to spill. I can hold my full mug upside down and nothing will come out of it because of the way the lid seals. I have three of these mugs, and I use them daily. On my shaky days when I drop things a lot or I have tremors, I can still drink hot coffee or tea without fear of spilling it on myself. I’ve gotten my mugs as gifts, but they can be found at Wal-mart, Costco, or online. The mugs cost around $20 each full price, but they go on sale often. I think they’re worth the investment.

2. Hot peppermint tea

I have digestive issues due to POTS and I also have seasonal allergies. Peppermint tea is my go-to for getting relief from these symptoms. The peppermint leaves in the tea help settle my stomach. I usually steep my tea for 10 minutes to get the full benefits. The peppermint in the tea also helps clear up my sinus pressure and congestion, along with other allergy-related symptoms. I like to drink the tea before considering taking medication because sometimes it can address the issue, and I already take plenty of medication.

Porch Summer 2014

3. Sunshine

Early into my illness, two of my co-workers came to visit. They encouraged me to spend time outside every day and they even brought me a chaise-style chair so that I could stretch out/elevate my legs while I sat on the covered porch. At the time, I was pretty skeptical that I could make it out the front door, much less be outdoors for more than a few minutes. But I followed their advice and it’s been helpful. Being in the sunshine lifts my mood. I’ve gotten to know my neighbors better, and I say hello to everyone that walks by my house because I want them to feel welcome on my street. It’s helped me feel less isolated too. I found out I am Vitamin D deficient, so now the sunshine is a even more necessary for me.

If I can’t make it outside, I open up the blinds during the day to let the light in. Even a little bit of sunshine helps me feel more connected to the world. And the sunshine always makes me feel a bit more happy.

4. Stationary and letter writing 

My illness has affected my ability to get out of the house and see other people. At times, I feel isolated, which makes dealing with the illness more difficult. I have always enjoyed letter-writing, but I’ve started doing it more now that I am ill. I have a box of stationary that I’ve collected over time and I use it to send out letters to pen pals and family members. And I have some wonderful friends and family who send me cards regularly, which is wonderful. I’ve even written anonymous letters for strangers who need encouragement through an organization called More Love Letters (the letters aren’t romantic, just kind).

Meds Rice Pack Bear pic

5. Cuddly stuffed bear

It may seem silly, but it can be comforting to snuggle with something soft when dealing with pain or exhaustion. I hold onto my stuffed bear when I am having a hard time, and it always helps me a bit.

6. Rice packs in a cheery pattern

Rice packs are great for dealing with pain. They can be heated or frozen and they can be manipulated to fit around most areas of the body. My mother-in-law sewed some ricks packs for me, and I specifically asked her to use some bright leftover fabric. It’s important to me to have pretty colors and patterns around me because it puts me in a better mood. It’s the little things that really lift my spirits. A simple tutorial for the rice packs can be found here. The tutorial is geared toward kid-friendly rice-packs, but it’s useful for anyone.

(There is a picture of one of my cheery rice packs in the above picture of my bear.)

Essential Oils

7. Essential oils 

Essential oils are natural and there are so many ways to use them to improve health and manage symptoms. I am just starting to explore how they can help me, and I’m already impressed! I won a do-Terra essential oil giveaway from Naturally Ashlie a few months ago. She was generous and gave me a few samples of oils to help manage POTS, along with Wild Orange Oil. I apply the Serenity Calming blend (not pictured) to my feet when I get overstimulated/anxious or need help falling asleep. It is magically helpful and starts working in minutes. I am even hoping to wean off my sleeping medication and use the Serenity blend at nighttime. Today I applied the Slim & Sassy blend to my stomach to help with digestive problems. It made my day much better. Keep in mind, it’s important to make sure essential oils are certified therapeutic grade, especially if they’ll be applied to the body or ingested.

Choosing Hope stone

8. Truth Stones

A few of my friends customize glass stones with kind messages on them, called truth stones. The proceeds from the stones benefit a local transitional shelter for women and children, called Dove Harbor. When I get overwhelmed or overstimulated, I hold a smooth stone in my hand and run my hand across it. The stones are especially helpful when I have trouble during car rides. Any type of smooth rock or stone can be used to help manage symptoms.

Cats collage 2014

9. Pets

I am home alone a lot of the day, so our cats are great company for me. I think it’s helpful to have at least one animal in the house. They lessen feelings of isolation and they help increase motivation to get up and move on tough days. I am so grateful for two adorable, spirited cats. Plus, cats are the perfect pet for our lifestyle right now because they are fairly independent.

10. Heated blanket 

My body struggles with temperature regulation, which means that heat and cold affect my body more than a typical person. During the summer, I have to be careful to keep myself cool, and I am getting nervous about the cold weather that’s coming soon. We live in an older home. It’s been updated in many areas, but it doesn’t hold heat as well as we’d like. I am getting creative at keeping warm without making the electric bill skyrocket. I’ve already started using my heated blanket when I get cold, and it is wonderful!

Please let me know if you learned anything helpful in this detailed post. I love helping people find ways to improve their quality of life!

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Following My Dreams (with POTS)

Danielle Oct2014

*A happy photo of me going to a wedding (before the craziness of this week began)*

After surviving a week of the stomach flu in our household, I am very ready to put my energy into being grateful. I’ve found a grateful heart to be a powerful weapon against the gloom that comes with chronic illness (or any other issue).

First, let me give you this week’s recap. S came down with the stomach flu late Saturday night. It was terrible for him. He had to rest for a few days after his symptoms improved so that he could return to normal. He went back to work on Tuesday, which is when I started to get sick. Since I wasn’t able to hold down meds or fluids for a while, my POTS symptoms took their toll. My resting heart rate was elevated the whole time, but I finally started to feel better after two or three days. Then, I somehow spilled water on my pill minder, and it got my pills for a few days wet. I’ve done my best to take my medications, despite their bitter, powdered form, but it’s been rough. Last night I failed miserably and I ended up getting sick right after attempting to take them. So needless to say, it’s been interesting around here the last few days.

But there is always goodness to be found and I remain grateful for the life I’ve been given. I know that my choice to cling to hope on rough days has made my life better. This week I was able to muster up the courage to submit three of my blog entries to HelloGiggles.com, a light-hearted website with articles written by women, for women. Just sending in my work is an accomplishment for me. I am proud that I stepped out of my comfort zone this week!

Lately, I’ve become inspired to work toward my dreams (and even form new ones). It’s not as easy to live with passion when my medical condition can be unpredictable, but I know it’s possible. I’ve walked through some dark places in my life, and I am still here. I am a fighter. I refuse to let something like POTS define me. I am still a joyful, kind, life-filled, quirky woman who loves coffee and baked goods. Now I just have an extra set of obstacles.

When I look into my heart, I see that my greatest hope is to show love to people who may not see it very often. I tend to be  comfortable with people who are ignored or marginalized. It’s challenging and lonely to be different than the status quo. But you know what? Everyone deserves to feel loved. Everyone deserves to feel heard when they share their story. I spent my teenage years trying to rewrite my life experience. I wanted my journey to be straightforward and simple. But now I realize that the most beautiful stories are those of redemption. My life has been brought from hopelessness, fear, shame, and pain into a place of joy, hope, and gratitude. I choose to live an abundant, full life because I remember the pain of living an empty one.

Today I choose to love the people around me. I choose to let them be who they are, where they are. I don’t ask others to change to become someone new. I allow them to be flaw-filled and broken. I encourage them to walk toward healing, whatever that means for them. Today I choose to remember where I am now and celebrate the progress I’ve made. I shut out my negative self-talk and I accept myself. I embrace the chaotic, glorious mess that I am. I listen to my soul. Today I choose to dream. I decide to live life as passionately as I can, even if it looks different than I’d planned. I make an effort wave to my neighbors and I take the time to notice the kindness around me. I dream of bringing joy to the people around me. I dream of a community where people listen more than they judge. Today I look past the difficult moments and I see the goodness around me. And I am grateful.

October Health Update

First of all, I changed the look of my blog (again). Thanks for staying with me through all of the changes!

IMG_20140829_145724_454

Before I share medical updates, I want to share a few bright spots from my week. I’ve felt overwhelmed with new/worsening symptoms, but there have been some beautiful moments. I have been pushing myself to be grateful. In doing that, I’ve seen so much kindness. I got a package in the mail from a dear friend and cards from my aunts. I had a friend take a break in her day to take me to get blood work done, and another friend brought me lunch on a terribly shaky day. The people I love have reminded me that I am not alone. 


The last few weeks have been full of appointments, blood work, and tests. Here are the bullet points of what’s going on with my health.

  • I’ve been doing physical therapy in the pool for 3 weeks. I started out with very weak arms and legs, and I’ve been gradually building my strength. I am now able to make it 40 minutes in the pool, which is progress! I still have at least four more weeks of therapy, but I am encouraged by how things are going so far. And my physical therapy team likes TV dramas as much as I do, so we have plenty to talk about while I do my exercises.
  • I started seeing a GI specialist to address my abdominal and back pain. He ordered blood work, an abdominal ultrasound on my right side, and an x-ray of my abdomen. The tests came back mostly normal. He also put me on a gluten-free diet to see if it could reduce inflammation in my digestive tract, but it did not help relieve my pain, so I am back to a typical diet. The doc started me on a medication to treat spasms in my digestive system, which he believes are the source of my pain. Unfortunately, the medication has not relieved the pain, and the tests did not provide any helpful information. I may need to see a different GI specialist who understands how POTS affects the entire autonomic nervous system.
  • My neurologist put me on a new medication. He listened to my concerns about possible autoimmune issues and he referred me to a rheumatologist. I am grateful that I found a wonderfully helpful neurologist. His standard of care is definitely worth the hour drive.   

Today I invite you to look for the hope and goodness in your life. Days can be hard, and sometimes we all struggle to find meaning in the midst of the chaos, but there is always something good to be found.

Goodness

Today I am writing on my front porch with a cup of coffee in my hand, looking at the bright yellow mums on the table in front of me. I was given the mums by a sweet family friend and I cannot help but smile when I look at them. Still, today is not an easy day for me. Somehow I feel empty and alone, even as I look at the reminder of friendship in front of me. I think that we expect ourselves to feel only one emotion at a time, as if gladness and gratitude cannot coexist with the sad tears that well up in our eyes. But happiness doesn’t drown out all of our sadness or completely fill the empty places in our hearts. And today I am reminded of that.

On Wednesday, I got a call from my human resources department, letting me know that I’ll be “terminated” from my job this month. My benefits have run out at work, which means that I will be officially unemployed due to illness. In my mind, I’ve known that this was going to happen. I understand that I am not physically well enough to work right now, and I’ve seen this coming for a while. However, my heart held on to the very unlikely possibility of returning to my job. My heart hoped to sit down with a proud teenager and listen to them explain why they are finally serious about treatment. My heart still wanted to have honest conversations with the kids who think no one cares and it longed to be a small part of their healing process. It’s terribly frustrating to be forced to walk away from something because of illness, and I have struggled with the lack of choice I have in this situation. I did not choose POTS, and I certainly didn’t choose to become so ill in my twenties.

This stage of my life is hard, and I am working to accept that. But I believe that there is more to life than the tough moments. Yes, there are days when I feel unsure of my future. There are moments when it feels like I am living someone else’s life, when I am full of doubts and questions. But I must remind myself that goodness can still be found in the hard days, because life is not black and white. Sometimes there is beauty where there is also pain.

So today I push past the idea that I can’t feel both joy and sadness. I allow myself to experience all of my emotions, and I embrace the messiness that comes along with being human. I embrace the tears and the smiles and the exhaustion. And I try to accept that right now my life is full of doctor’s visits, medication changes and blood tests. I choose to believe that goodness can come out of dark places.

I’ll leave you with an example of finding goodness on rough days. Our cat, Cali, usually prefers my husband. She LOVES him. But last night she crawled up on my chest and cuddled with me when I felt miserable (even though S was close by). Sometimes we need to be reminded that there is always something to be grateful for.

DanielleCali9-2014