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?

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When A Warrior Passes

Honestly, I have wanted to write this post for a good two months, but it has been difficult to write.

You know once you have transported to the world of chronic illness that one day you will be devasted when someone passes away. However, you are never ready enough for that moment.

I had expected to eventually lose someone in a Facebook support group not someone I went to school with. Two weeks before she passed I ran into her mom while food shopping. I barely remember anyone from high school and it is embarrassing as well as frustrating for me. But when her mom said her name I could picture her sitting next to me in middle school. I had assumed she moved not that she was chronically ill with at least one of my illnesses. I promised her mom I would talk with her and we could hang out. Her mom said they were attempting to get her paired with a service dog. I was so excited at the possibility of having an in person chronically ill friend my age.

I didn’t hesitate finding her on Facebook.I tried to be patient waiting for her to response constantly reminding myself she was flaring. Within hours I found out I was too late and it broke my heart in a new devasting way. I immediately regretted not connecting with her sooner. I know she suffered way too long and things were horribly unfair. She should be going to college and building a life for herself.

Lossing someone who has one of your illnesses or who is chronically ill is extremely different. I have balled my eyes out many of times for a life of a fellow warrior that I barely knew. My heart goes out to the families in a unique way.  I might not have known them well or maybe not at all yet I live a small part of their story. I live the pain, doctors, symptoms… the life of a spoonie.

The grieving seems to be unique to those with chronic illness. There is an element of guilt for living because you know it could have been you. You wonder why it was that person, what if someone listened better, could it have been avoided, or will that be me one day. Frustration with the health care system at times.  Angry with the people who brush us off.

It has been a few months but from time to time she’ll come to my mind. I wish I remembered more about her other than her pretty hair and sweet voice, like an actual conversation. This death has been completely unique in the way it affected me.

Anytime someone passes with a chronic illness around your age it hits home and it is difficult. When you lose someone to chronic illness allow yourself time to grieve. If someone in the chronic illness community you know passes find a special way to say good bye and to pay your respects. When a girl passed with IBD a few weeks back, I found great comfort in leaving her family a message on an online guest book in honor of her.

Regardless of how close you were let yourself cry if you need to.  Give yourself permission to get angry, to feel hopeless, or broken. Emotions are healthy. They are indicators of things going wrong and of heartbreak. However, emotions are not your dictator so once you have allowed yourself to feel you need to slowly move forward. Allow yourself to heal slowly. Seek support from others who are chronically ill, family, and friends. Cherish each moment in life and live them to the fullest as best you can.

 

 

Shake it Off

Living with a chronic illness is a challenge beyond words when encountering people who don’t understand. We have all had an experience of rudeness beyond belief. There are stairs when taking medication in public. Rude remarks when using a walking device. 

 I cannot tell you how many times people have been disrespectful or stared at me because I use a wheelchair in a store. The majority of the time people either stand in front of me, unwilling to move or practically run away. People act like I have the plague. I have heard over the few years I have used a wheelchair in a store that I am too young to use one or too pretty. The stairs and remarks make me feel like I owe people an explanation. However, I do not need to explain my life to everyone I encounter. If the right doors are open to education someone I don’t mind but there shouldn’t be a social pressure to explain it all. 

 Many people doubt the intensity of our pain and they question if we are indeed really sick. No one seems to understand battling against your body and taking care of yourself is a full-time job. Simple tasks are draining. Some people go out of their way to upset us or to be rude. They offer unnecessary options on how to break free of the chronic illness chains.

 

Too often Spoonies lose friends due to their illness. Some people want absolutely nothing to do with us while others act strangely towards us. 

Too often people judge us before they get to know us. People treat us at times like we are nothing or are stupid. 

Too often we hear phrases like: 

But you don’t look sick

You need to be more positive

Have you tried…

You’re too young to be sick

It must be nice not having to go to work/school

You’re just having a bad day

You need to get more exercise

It’s all in your head

Maybe if you got out more

These things get under a spoonies skin, to say the least. When people mistreat you, SHAKE IT OFF. It is not your fault. Don’t let them get to you. You are an amazing person. Even though you are ill, you are so valuable. You have so much to offer this world. Shake off the stares, Shake off the negative and nasty remarks, Shake off the heartbreak…. Shake it off.. It’s gonna be alright

Hold your head up high, cause it’s gonna be alright. You have so much courage. You are an inspiration for thriving despite every setback. Sending lots of spoons, prayers, and hugs. ❤

To The Girl With The Bruises

Girls receive the message that they need to be flawless physically which is impossible. They are ashamed too often of bruises, rashes, stride marks, or other physical changes due to things outside of their control. No one should feel ashamed of their body because of their invisible fight. They hide the imperfections at all cost.

To the girl with the bruises from falling too often because your body cannot remain up right, your bruises are beautiful.

To the girl with the bruises from unknown causes, your bruises are beautiful.

To the girl with the bruises from bumping into things because of balance issues your bruises are beautiful.

To the girl with the bruises from a blood disorder, your bruises are beautiful.

To the girl with the bruises from abuse, your bruises are beautiful.

To the girl with the bruises battling her own body and daily fighting for her life, your bruises are beautiful.

Your bruises are a part of you for a few days, weeks, or maybe a season of life. They do not define you or tint your beauty. There is no reason for you to feel ashamed. Your bruises are beautiful because they represent your invisible fight against your body.

They are beautiful because they are proof that you never give up. You have courage, strength, and dedication pushing through the most difficult times. You might need a break or time for a melt down which is okay but you continue moving forward.

Your identity is not rooted in your looks. Your value more than skin deep. Your heart is stunning. You have courage that many people only fantasize about. You are an inspiration and a blessing beyond words. Sweet friend, your bruises are beautiful.

Spoonful of Spoonie Encouragment

Mornings for those with a chronic illness are a struggle beyond words. Waking up and willing our bodies to function is a fight. Here is a spoonful of encouragement for spoonie warriors. Happy Monday, brave friend!

You have victoriously made it out of bed this morning. The symptoms and pain are already overwhelming, but you’ve got this. You only need to take today one minute at a time. You have all the strength you need, even though it might not seem that way. Anxiety and depression attempt to dictate your day. Take a breath. Take a break.  Get some rest. Keep fighting to make today the best day possible.

You have been chosen to walk this path. It is one filled with heartbreak, disappointment, and setbacks. Walking the path of someone who is chronically ill is a challenge to say the very least. Being sick has most likely disrupted your flawless rhythm with life. It has stopped you dead in your tracks. Your illness has tried to toss your dreams out the window.

Though this path is difficult, I assure you there is a lot of beauty to be discovered. Sure life is not what it used to be, but the song you sing is just as beautiful. There is hope, joy, love, laughter, and life to be found on this path. You will be able to recreate your wonderful dreams. You are still you, despite your illness. You are an amazing and beautiful person with a flawless story and a huge purpose.

    There will be days that you become overwhelmed and feel completely alone. Your feelings are understandable, however, I promise you, you do not walk alone on this path. There are people who care about you, people who understand how difficult the journey is, and people who want to support you.

I am proud of all you have accomplished. I know you will thrive today. This week will be lovely simply because it is the only choice. While you don’t need to be positive all the time you need to take baby steps forward. You are doing amazing. Raise your coffee (or tea) to a great week warrior!

1 in 5,000

We always knew I was different. Completely aware I was rare. Everyone has always made jokes about it here and there due to the silliness of it all. But it wasn’t until recently that it was discovered that I am one in 5,000-8,000 people rare. More rare than just a few extra parts. More rare than a strange combination of chronic illnesses.

This journey officially began this past fall with a bleeding flare. I was bleeding easily while on my normal steroid dose. It was irritating me enough to mention it to my doctor. After extensive research and dissing it all we agreed that EDS was a possibility. I was advised to see a geneticist. A three-month wait and a two-hour appointment appeared to be yet another dead end. The doctor was not educated enough in each type of EDS to accurately diagnose EDS. While I knew an EDS diagnose would not change my treatment plan I was extremely frustrated. I was left with no answers to my bleeding which was progressing and a bunch of symptoms that did not fit into a symptom list of any of my current illnesses.

While I knew an EDS diagnose would not change my treatment plan I was extremely frustrated. I was left with no answers to my bleeding which was progressing and a bunch of symptoms that did not fit into a symptom list of any of my current illnesses. (*Note there is still question if EDS is present).

I moved on as we all do when no answers are clear. I had a voicemail when I returned home one afternoon. Neither my mom nor I recognized the doctor’s name left for me, so I concluded they had the wrong person. I returned the phone call innocently without much thought. Little did I know it would change my life.

I was told I have HHT. This is the reason my POTS is out of control. Due to my migraines, I would need a brain MRI because they highly suspect that there is something linked to this illness present. Additionally, I would need testing on my heart. Just like that, she wished me a good day and the phone call was over.

I had three initials because the person I spoke with did not know how to pronounce the name. Hereditary Hemorrhagic Telangiectasia. Locating a description was a challenge. Gaining an understanding of the big picture of how this illness had been affecting my body for twenty-three years felt impossible.

“HHT is a hereditary disorder that is characterized by abnormal blood vessels. A person with HHT has a tendency to form blood vessels that lack normal capillaries between an artery and vein. This means that arterial blood under high pressure flows directly into a vein without first having to squeeze through very small capillaries. This place where an artery is connected directly to a vein tends to be a fragile site that can rupture and bleed.

An abnormality that involves a larger blood vessel is called an arteriovenous malformation (AVM). Some people with HHT will also have AVMs in one or more organs. AVMs occurring in the lungs and brain and can lead to serious complications. Everyone with HHT should undergo screening for lung and brain AVMs because if these are detected, they can be treated. The HHT Foundation recommends that all patients and families with HHT be assessed at an HHT Treatment Center for proper screening and treatment.”

From my reading, I learned that at least three genes are mutated in this disorder. There are far more questions than answers as there are with most rare diseases.One article reported less than a dozen doctors who specialize in this disease in America.

Plenty of testing needs to be conducted to give them a full picture of how this is affecting my body. So far a special hearing test/ doctor appointment is set up.  We are waiting to see what heart tests should be run and how often. Lastly, a brain MRI will need to be approved by the insurance. This is half of my medical mess at the moment.

Coping With a Rare Disease:

I have coped with chronic illness by learning as much as possible, then educating others. However, it is impossible for me to gather the amount of information I desire because it simply does not exist. Therefore, my coping methods need to be adjusted. I am confident that connecting with the rare disease community will provide comfort for me. Furthermore, I am asking as many questions as I can come up with for my medical team and setting realistic expectations because they are learning with me.

Each illness comes with a set of emotional struggles. It is tempting to go numb but feeling the emotions is an important step in grieving. Each illness seems to shape our character. I am taking HHT along with all my illnesses one hour at a time with a smile and plenty of uncertain tears.

June is HHT Awareness month. “Light your candle with us on June 23rd – Global HHT Awareness Day – to honor those with HHT who bring light to the world.”

Preparing For A PICC Line

I have been doing Saline for POTS for about a month now. The improvements have been astonishing to everyone. While getting treatment twice a week I was not falling, improved heart rate improved blood pressure, and less pain (most times) with passing stones. Being able to shower and not get dizzy is something that is hard to put into words. Simply amazing.

We are attempting to taper the steroids a little. However, it is quickly becoming apparent that my body is not okay with this move. The pain and fatigue are expected. In addition, my blood pressure is regularly crashing. My POTS doctor put an immediate pause on the tapper to avoid me being admitted to the hospital. We are now preparing to have a PICC line placed so that I can do fluids at home. I have gotten to the point with my POTS that I can become critically dangerous at any point. It’s not just a little low blood pressure but extremely dangerous low blood pressure (that refuses to respond to salt).

With my final week of school, I was only able to get to chronic care once this week. It was a good learning experience for everyone involved showing how well I respond to Saline. The combination of tapering and less Saline has been difficult.

The goal is to do this short term a few months, but it is a see how it goes type of a deal. We have opted for the PICC line mainly because of time frames (a Midline wouldn’t stay in as long and the doctor thinks the Port is too drastic). Additionally, it is easier for me to do things on my own in comparison to a Port.

“A PICC line is a thin, soft, long catheter (tube) that is inserted into a vein in your child’s arm, leg or neck. The tip of the catheter is positioned in a large vein that carries blood from the heart. The PICC line is used for long-term intravenous (IV) antibiotics, nutrition or medications, and for blood draws.” (chop.edu)

PICC lines can be used in many different illnesses such as Lymes, EDS, POTS, CF,  and IBD just to name a few. Others with chronic illness may use it to give antibiotics or to get TPN.

Many people find medical procedures intimidating. Here are my preparing for a PICC tips!

Educate Yourself: Your doctor will give you information but take the extra step. I would suggest reading three to ten articles from reliable sources. Read about how it is inserted and how to care for the line. Youtube also has some solid information.

How is the PICC inserted?

  • A specially trained nurse or doctor will use an ultrasound machine to find the veins in your upper arm.
  • Your arm will be cleaned and covered with a sterile cloth to prevent infection.
  • Medicine is used to numb the area where the PICC will be placed. The PICC will be inserted into a vein just above the bend of your elbow and guided into a large vein in your chest. Most patients feel little or no discomfort during this procedure.
  • Once the PICC is in place, it is held to your arm with special tape and covered with a sterile dressing.
  • A chest x-ray is taken afterwards to make sure the PICC is in the right place.
  • You will be able to bend your arm and use your arm just as you would without the PICC in place. my.clevelandclinic.org/

Connect With Someone: Find someone with a PICC line to connect with. If you are unsure where to start check out a Facebook support group. In addition, talk with a family member about it and at least one friend. Those you love can offer a unique perspective.

Supplies: There are some things that are included like the saline flush, your meds, and the tubing. I decided to invest in a PICC line cover to wear during the day. There are so many cute options these days! I got my cover from Sleek Sleeves on Amazon. I also invested in a shower cover which I am hoping works like a charm.

Additional Tid-Bit Tips: 

a1562040895_10.jpg get the PICC Line wet.

Know the signs of an infection/ know when to call the doctor

Find out if you have any restrictions with it

Know how to use it (A home nurse should stop by to give you a crash course)

Have a plan to infuse on the go if needed so that your not stuck at home if you feel well enough to go out

If you have a PICC line comment your tips!