Odd Selfies

Why do girls take hospital pics or selfies when we feel sick as a young spooine? I didn’t understand at first. It isn’t for sympathy. It is to remind me what God has allowed me to overcome by His grace. To remind me of His goodness. It helps me to see how far I’ve come. The battle has been won. Victory in Jesus. Celebrate each small mile stone as you walk the road of chronic illness. Do you have a selfie or photo that others might think is bazaar? Share the photo and why you took it in the comments.

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The Struggle of Our Today

“We’ll tell you about our broken places of yesterday but don’t dare admit the limitations of our today.” Lysa Terkeurst.

Wow. These words are heavy, exposing the truth. It is easier to talk about the past. How we have overcome trials demonstrating our own persistence and strength. Of course, from time to time we will include God, most times as a hero who swept in and saved the day. Rescuing us from the storm.

But talking about today? Being transparent; honest? That is a different story. It takes guts. We like to appear to the world as having it all together. As if we can accomplish this insane to do list, save the world, and be home for supper. In reality, we are falling apart- most people are facing limitations daily, which could be illness, addiction, family disputes, or finances.

 

With a chronic illness, we act often. Taking on the role of a healthy and normal individual in order to blend in or make others happy. A friend asks how we are… and too often, we smile straight up telling a lie, “I’m doing great”…. Desperately we even debate which lies to tell our doctor. What is worth sharing? Will he or she believe me? Is it worth the frustration? It is challenging, to be honest, and the individual that God created us to be. Isolation closes in on us; as we swim in the sea of invisible illness.

 

Without a doubt, there is a time and a place for everything. God’s word echo’s this in Ecclesiastes 3:1, “There is a time for everything, and a season for every activity under the heavens.” At times taking on a role has its advantages, and at other times, it is downright damaging. There is also a time for raw honesty. “You weren’t designed to go through suffering alone. As times get tough — and they will — reach out and reach up. “You weren’t designed to go through suffering alone. As times get tough — and they will — reach out and reach up,” Rick Warren.  Putting yourself out there is scary. Sharing your heart is healthy. By sharing with others, you become an inspiration and encouragement to others. Struggling does not make you weak, it makes you human.

Additionally, we ask who can we be honest with. Lately, I seem to keep hearing the same message, we   were not meant to do life on our own. We were made for community, not isolation. But in all honesty, it easier to say than do. Falling into isolation becomes easy with an illness. Most times, it is not intentional. We flare up, battle fatigue, and lose many friends. Having someone we can confide in about the struggles of today is rare. There are people who hurt us, leave us, and betray our trust.

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I think it is hard, to be honest in this way because we don’t want to be negative or a burden to others. At the same time, it is important to do so. Not only is it healthy, but it allows others to support us and specifically pray with us then allows us the chance to offer the same to them. Being honest allows us to share with others how God is working in our lives right now.

 

Personally, I have two friends who I can be brutally gut level honest with, knowing in my heart that no matter what they will still love me and will pray with me. Their friendship is a beautiful treasure. I hope you have at least one person who you can be honest with about the struggles of today.

 

Lord,

 

You are the God who sees us and knows us completely. Teach us how to be honest about the struggles of today. Bless us with people who we can share our burdens with and support. Allow us to continually bring glory to Your Holy Name.

 

Amen

Can We Truly Work With Our Doctors?

Everyone gives the advise to work with your doctor. And don’t forget have them communicate with one another. Except for, it’s not always that easy. Most times, it is not an open conversation with a doctor. They will tell you what they are ordering, you better make an appointment. You can avoid it for a while but if you don’t do a or b they will state you declined medical advise and they are not responsible. Or if you don’t do it they let you go as a patience. I have had so few doctors who sit down with me and openly discuss my illness, treatment, or testing, or daily life.

I am not the typical text book case, actually none of it is black and white. I am a rare case. One may picture that brilliant team of doctors around the sick person discussing how to help them. Sadly, that only happens on television. In real looks more like this: gastro sees patient tells patient tell your cardiologist to do this. *They NEVER speak* Cardiologist ah, doesn’t look normal tell your rehemunatologist to order this test. In the hospital they argue. And in the end all that is accomplished working this way is stressing out the patient.

The healthcare system does not function decently, but rather it is extremely dysfunctional. Advocating for yourself as a patent is not an easy task. Additionally, it is most times just as difficult for a caregiver to advocate. Some don’t think patients know anything and should just follow directions. At times, asking for something that is undoubtedly needed results in someone telling you that you want another problem or someone gets offended that you are telling them what to do. More and more stories surface with the medical community not paying attention and causing devastation.

Once you are established at a medical center switching doctors is not only a hassle but can be dangerous due to not being able to refill medications. Sometimes, it feels like we are taped in the Spoonie world and the medical professionals hold the key to our escape. Without being able to truly work together we as patients suffer greatly.

What types of medical dysfunction have you encountered?

Gastroparesis

In my personal option rare diseases do not get enough attention so anytime I have the spoons and time I am delighted to blog about any of them. Many doctors are not educated enough about them. Education for us all makes a huge difference.

Gastroparesis is considered a very rare disease but some argue that doctors are just not educated enough to diagnosis it. It can overlap with the trio overlapping illnesses including  Ehlers-Danlos syndromes, Postural Orthostatic Tachycardia Syndrome, and Mast Cell Activation Syndrome. For anyone who has taken note of the fact that I have the trio I do not know for a fact if I have it and do not think my doctor would identify it. Furthermore, it is too difficult to tell on steroids and I’m allergic to part of the test.

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According to the found Gastroparesis is a GI track mobility disorder. In further detail they explain:

“Normally, the stomach empties its contents in a controlled manner into the small intestines. In gastroparesis, the muscle contractions (motility) that move food along the digestive tract do not work properly and the stomach empties too slowly.

Gastroparesis is characterized by the presence of certain long-term symptoms together with delayed stomach emptying in the absence of any observable obstruction or blockage. The delayed stomach emptying is confirmed by a test.”

Symptoms vary from person to person.

  • Vomiting
  • Nausea
  • A feeling of fullness after eating just a few bites
  • Vomiting undigested food eaten a few hours earlier
  • Acid reflux
  • Abdominal bloating
  • Abdominal pain
  • Changes in blood sugar levels
  • Lack of appetite
  • Weight loss and malnutrition

 

 

I recently saw a story that is a ray of hope in a cloudy sky of chronic illness and would love to share with you to encourage you.

In 2009 I was diagnosed with severe Gastroparesis and another auto immune disease. Gastroparesis is damage to the vagus nerve which doesn’t allow your stomach to empty its food contents properly. So your food can literally sit in your stomach for days instead of hours. It’s pretty miserable. Worse, the few effective medications available to help ease the symptoms were not an option for me due to an allergic reaction to them. In severe cases like mine there is the option to get a pacemaker installed in your stomach, but as I already have a pacemaker/defibrillator I was once again left with no solution to help me. Most recently, I was rushed to the ER because of hypoxia (low oxygen) that saw me admitted to the ICU for three days. I was told that all of my medications, heart related included, had built to life threatening toxicity due to the blockage directly caused by my Gastroparesis. I was in the hospital for another 5 days and taken off all my medications to detox my entire system. I used that “blank slate” to try a vitamin system (I know it sounds crazy, right?!)  which helped greatly with both my chronic and fibro pain. I’ve found through all this that doctors prescribe medication often, because they have no other solution. We don’t think about the life we lose because of the medications prescribed to us or the life the side effects take from us because we think that it’s helping us. For me, the medications that were supposed to help me almost took my life. I needed a balance like most of us of medications and natural elements.

If you would like more info on what this lovely lady did to improve her health please comment your e-mail. (I ask people to do this so that I can respect their privacy and provide ALL the information I have on hand possible pertaining to their illness. If you have an illness I have I have additional tips I would love to share with you).

Need more info on Gastroparesis check out this video

Foundation

What does Mayo say? 

Learn more from other patients on The Mighty

Encouragement

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It is difficult when your illness dictates your life. When you are taped with no way out. Unable to live. Merely surviving one moment at a time. Hope seems light years away. Everything seems to crumble right before your eyes. Everyone has days when they break. It is okay to have break downs as long as you don’t give up. You have everything you need to overcome these struggles.

You are NOT alone. Others feel this way as well. It won’t be like this forever. Eventually you will be able to live life to the fullest again. We must hold on to this hope, for it gives us the strength to keep fighting. Keep your faith. Stay strong. Hold onto hope.  You have so much strength and courage. You accomplish amazing things on daily. Be proud of all you have overcome.

It’s a season for beauty and blessings. Your strong will provide strength and hope to countless people. There will be positive things that occur because of this difficult season in your life. God’s got this. Rest in his loving arms. Blessing are just around the corner. Be open too receive all the Lord has to offer. Gentle hugs spoonie warriors. Sending prayers and spoons.

Wisdome from a Chronic Illness Warrior

I am excited to have a beautiful warrior from the Chronically Hopeful Facebook page guest blogging for us today! “Ellie is a 45 year old woman living in South Carolina.  She has battled Malignant Multiple Sclerosis with grace and courage. She works as a cashier, but is always dreaming of more, she’s just not sure of what more is. Her favorite hobbies are reading, writing and yarn crafts. Her biggest hope in blogging is to help no one ever feel alone in their journeys with chronic illness, or anything else.” Please check out her blog here.

 

She never wants to meet me for lunch. It’s the only time my health will mostly fully allow me to socialize outside the home. My friends know this. She never answers my phone calls. That email has been sitting there unread for days. He won’t answer my texts, but he’s all over social media with all those silly memes. The phone shouldn’t ring off the hook every time I call for an oil change appointment only for me to come home to 3 messages on the answering machine asking why I haven’t scheduled my service appointment.

 

There’s no reason I can see for me to be number 68 of 123 on hold for a customer service rep when I call to try and straighten out yet another medical bill. Yet I am. It’s only more aggravation added to a life already made extra stressful by multiple serious and chronic illnesses. Can’t people act right if they’re going to be a blip on my radar? Don’t I deal with enough already just fighting to live?

 

There’s something I’m forgetting in the throes of all these medical appointments, treatments and pain-  the world won’t stop spinning because I’m always in pain. It won’t even slow down a little. I have to jump up on the ride while it’s spinning, full turbo blast speed ahead. Sometimes there’s a kind passenger already onboard willing to help out, but not usually. I must adjust and remember that people in my life are more than just blips on my radar, even the people just passing through and the strangers I encounter.

 

In a life full of illness and pain and the extra stress and hardships they cause, people are everything. My city is in the midst of a big cold snap with high temperatures in the 30s. I was sitting outside the library to cool off because my body doesn’t regulate temperature the same way as “normal” people. There was a shirtless man in shorts walking by on the sidewalk. He was singing loudly until a police officer pulled up beside him in his cruiser. I wondered if there was going to be some kind of huge scene because the lyrics the man was singing were not the nicest ones.

 

There was no scene. The police officer talked to him quietly and then reached back in his cruiser and put a coat on the man. They then got in the car together like they were friends. I hope they went to a shelter if the man needed it.

 

Many years ago I was grocery shopping with my mom and saw a woman crying in the store. We asked if she was ok. She said yes and we didn’t press the issue, but it didn’t look like she was ok. We carried on with our shopping and rounded a corner and there was the woman full on sobbing sitting on the floor in the produce section. The store manager was on his knees beside her praying. It seemed to help her.

 

Many years later, this event is still having a profound impact on my life. I didn’t know religion in any way at the time. I was dead set against it, actually, and quite vocal about my lack of faith. Time has changed that, and recently I went back to this store to see if that manager was still there. He was. He too remembered the crying woman. I told him what an impact it had on me. The conversation I had with this manager will stay with me forever, and well, is too private to share, but it, and the crying lady were a huge stepping stone on my path to a faithful life.

 

Please remember that as we go through life with disease and pain that everyone is going through something. Illness that doesn’t go away does not make our pain different than anyone else’s. It may mean there’s less of a break, but pain is in the eye of the beholder, everyone feels it differently. Just like beauty, and that is a beautiful thing.

 

 

 

Christmas Cookies

Baking is an enjoyable part of the Holiday season. I have been extremely spoiled, every season there is something homemade my mom makes for us from applesauce to pies to cookies to candy. I always enjoyed assisting her in baking, especially during the Christmas season. It has been difficult for me to bake on my own because of POTS and a lack of energy. I am going to share some cookie recipes with you. Some are spoonie friendly, others just taste good and are worth sharing.

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Low Spoon Peanut Butter Cookie Recipe:

Ingredients:

1 cup of peanut butter

1 egg

1 cup of white sugar

Directions:

Preheat oven to 350

Combine ingredients. Bake for about eight minutes

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Philly Cream Cheese Cookies

I simply love these cookies. They are different than the norm but festive and delicious.

Ingredients:

1 (8 ounce) package of Philadelphia cream cheese, softened

3/4 cup of softened butter

1 cup of powdered sugar

2 1/4 cups all-purpose flour

1/2 teaspoon baking soda

1/4 teaspoon mint extract

Combine ingredients. Allow dough to chill for 30 minutes. Preheat oven to 325. Bake 10-12 minutes. Makes about three dozen cookies.

Shortbread:

More of a classic type cookie. I love simple cookie recipes. They can allow those with chronic illness who are sensitive to take part in the cookies. I am not gluten-free but have a lot of abdominal issues and this cookie always sits well.

Preheat oven: 350

1 cup of butter

1 1/2 cups of all-purpose flour

1/2 cup confectioners’ sugar

1/4 teaspoon vanilla extract

1/2 cup of cornstarch

Being on your feet for too long is draining. I recommend sitting while making cookies. Using an electric mixer can help conserve energy as well. Take breaks in between, if needed. Rember there is nothing wrong with getting help baking or having someone bake for you 🙂

My family and I love this Gingerbread Cookie Recipe by Trisha Yearwood.

Ingredients:

  • 1 cup vegetable shortening
  • 1 cup granulated sugar
  • 1 cup molasses
  • 2 tablespoons cider vinegar
  • 1 large egg
  • 1 tablespoon ground ginger
  • 1 1/2 teaspoons baking soda
  • 1 teaspoon ground cinnamon
  • 1 teaspoon ground cloves
  • 1/2 teaspoon salt
  • 4 to 5 cups sifted all-purpose flour, plus more for flouring
  • Nonstick cooking spray, for the baking sheets and rolling pin

Preheat the oven to 375 degrees F.

For the cookies: In the bowl of an electric mixer, cream the shortening and granulated sugar together until light and fluffy. Add the molasses, vinegar, and egg and beat on high speed to blend thoroughly.

Sift together the ginger, baking soda, cinnamon, cloves, salt and 4 cups of the flour in a separate bowl. Add the dry ingredients to the creamed shortening and sugar and mix to make a firm, manageable dough, adding more flour if needed. Wrap the dough in plastic and refrigerate until firm, about 3 hours.

Then the super fun part! Cut cookies into tons of fun Christmas shapes using cookie cutters. Bake for 5 to 6 minutes.

What are your spoonie baking tips? What is your favorite Christmas Cookie recipe?