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!

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!

Undercover Zebra

I am so excited to have an amazing EDS warrior guest post today, Hana. Please share to help us raise awareness for this rare disease.
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Ever hear of Undercover Boss? Well, this is Undercover Zebra: Where chronic illness warriors go undercover as healthy individuals to chase their dreams in the real world. On this episode, we have Hana Belanger, an 18-year-old girl with the main diagnosis of  Ehlers-Danlos Syndrome Hypermobility Type (hEDS) who dreams of being a cinematographer in the music industry. As an adolescent, she must figure out her own identity, chase her dreams, and not let a rare disease define her. If you think this to be a challenging feat, then you are right. She is…an undercover zebra.
I start every morning the same way, not wanting to get out of bed. Whether it be my 5:45 school alarm to Bowling For Soup’s “High School Never Ends” or sleeping in past noon on the weekends, the act of waking up is just another arduous chore no likes to endure. So far, just like any other teenager in the world, or really, any non-morning person in society.
Once I finally persuade myself it is worth getting up, I “oil” my joints with either Icy Hot or Arctic Ice analgesic gel. Whichever I just happen to have on my bedside table at the moment. Hypermobility is a symptom of EDS, however, in the morning I find that my joints much rather be stiff with pain, like the Tin Man from The Wizard of Oz. I also tend to take this time to pop back in any joints that may have popped out of place while sleeping the night before. Got to love all those constant dislocations and subluxations. More symptoms due to the faulty collagen my body produces. Mornings with a connective tissue are never boring.
Next step is getting dressed. My favorite comfortable get up has to be pajamas, especially my zebra print ones. Sadly, school dress code does not allow for pj’s. Next best outfit of choice? a baggy band t-shirt and a pair of leggings. Don’t forget to accessorize with wristbands, a mood stone choker, and a plethora of braces and KT tape to keep all those joints in place. Pretty sure my joints like to go out more than I do. I always am found wearing my knee braces, but my collection expands to wrist braces, ankle braces, a back brace, and even a neck brace. I also have a cane I decorated in zebra print duct tape because when you need some extra support you have to make sure its cripple swag awesome.
My morning concludes with the breakfast of champions: AKA medication and vitamins. Then, on school days, I rush off to spend 6 long hours so I may be educated enough to graduate. After 12 years of this grueling routine, it does become tedious. I also have a work study internship with my local cable access station, a slam poet, and freelance videographer. The last three are the most fun I believe and give me a huge platform to be myself. When I am on stage or behind a camera I do not feel like the sick kid. I feel like a poet. I feel like a professional videographer. I feel…human.
Many days it is hard to hide the pain I am going through. EDS likes to throw curve balls more than Alton Brown on his show “Cutthroat Kitchen.” Often I wake up with migraines and nausea, which takes hours and even sometimes all day, despite medication. I have injured myself in school walking to lunch and working a one-hour film shoot. It’s as if EDS does not want me to live my dream.
But I will not cave into this awful disorder. That wouldn’t be very punk rock of me to give in. I know my limits and I go as close to the line without crossing over. I make sacrifices when it is safe to do so to enjoy myself. I have been to music festivals and concerts, filmed all day events, went to my Junior Prom, etc. EDS does not have to rule how I live. I just have to adapt to my circumstances in order to survive.
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Saline Update

I got my second round of Saline at Chronic Care earlier this week. This time I got two liters over about four hours. It was much longer than I had expected. The staff there was fantastic. The doctors have set me up to have someone come in to do a safety check in my house to accommodate things for when I fall and I got another neurology referral.

I was impressed with my results following my first Saline treatment. I was able to shower without feeling dizzy, walk in the store twice, and did not fall for a week. Pretty amazing stuff! It was a 90% improvement with that treatment.

During this infusion of Saline, it was noted that my blood pressure had drop fairly low-mid 90s /60. I do feel a big difference, but some dizziness most likely blood pressure related. The dizzy spells improved about 75- 80% this time which is still excellent.

I have another infusion Monday. Then meet back up with the doctor a week later. It is a very promising treatment at this point in time, which I am hoping to continue.

IV Fluids For POTS

Wow, I guess I don’t do health updates that often. I just noticed that it has been six months since my last POTS update.  I haven’t done many updates on my POTS because little progress has been made. Just an overview my pressure is still on the low side, heart rate most times insanely high, falling, near syncope, tremors/muscle spasms,  headaches, and brain fog. Later in the day is extremely difficult especially the closer I get to my Remicade infusion. I am thankful that I now have a rollator walker. It makes life easier after showers to safely get back to my room.

I have noticed the brain fog affecting me more cognitively lately, which adds to my frustration at times. There are times I have dyslexic tendencies while writing. I will switch or mix up letter. My spelling at times is worse. I tend to file that stuff under POTS.

I have had minimal success with POTS treatment. I have been on a tachycardia medication, but it is not consistently doing its job. Somedays even with the meds my heart rate is 160.  The steroids raise the blood pressure slightly but I sill come in at low 100- 115/ 50-85 ish.

Needless to say, my POTS treatment leaves my doctor frustrated, my family frustrated, and me frustrated. Falling every other day or more just isn’t acceptable anymore. I have been doing it off and on for three years now. My body is exhausted. I have injured a few things. My bones are not in a place that this is remotely safe. I kindly but firmly told my doctor we need to do something, anything at this point. It was a long debate with begging

I kindly but firmly told my doctor we need to do something, anything at this point. It was a long debate with begging laying out several creative options; medication changes, IV fluids, or teach me to accommodate my life. I was extremely respectful and compassionate as I always am with every medical professional (I remain that way even with the nasty ones). I thanked him for all he has done furthermore mentioning I am beyond thankful for the hospital. I find it important in the midsts of frustration to express that I am thankful and I understand I am complex but we need to work together so that I can have a better quality of life. Despite my compassionate response things were left at that point in time unsettled. My doctor wasn’t thrilled with my options. At my next appointment, my mom accompanied me as always and sat silently. My doctor was more compassionate, willing to listen, and was impressed with the research I had presented to him.

Despite my compassionate response things were left at that point in time unsettled. My doctor wasn’t thrilled with my options. At my next appointment, my mom accompanied me as always and sat silently. My doctor was more compassionate, willing to listen, and was impressed with the research I had presented to him. Even so, I could tell he was not sold on the idea of using IV fluids to treat my POTS, however, we had tried everything else. It seems too simple. Too basic. Thankfully, he allowed me to try which is all I could ask for.

You, need to learn how to be your own advocate. Speaking up doesn’t mean throwing a fit or being nasty. Speaking up can be done compassionately and with respect. It gives you a voice, an active part in your health, and respects your body. Never be afraid to ask questions or say no.

Today I got my first round of IV fluids. I also had my Remicade infusion, which I will do a separate post on. I was at the infusion center for four hours total and a four-hour round trip. I am expecting to notice a difference tomorrow.

So for anyone who is wondering, how can simple saline help POTS, I will gladly share. More research is needed, but the results to me are amazing and worth trying if your POTS doesn’t comply with normal treatment. Most of us are very dehydrated this, of course, helps with hydration. Additionally, it can help blood pressure, heart rate, decrease passing out or near passing out episodes, help the person stay upright, and possibly more. In my case, the hope is to also decrease shaking, improve brain fog, decrease infections (that could be related to dehydration), and decrease kidney stones.

Today I got about a litter and a half. Furthermore, I was told to keep up all fluids by mouth. Very rough estimation 50-60 ounces by mouth which are a slight decrease from a normal day. I will have two additional tiral runs of fluids next week at a center called Chronic Care. I am extremly hopeful with this treatment.

2017 Encouragment

Embrace 2017 with a joyful smile and a grateful heart. Release the grip on 2016 as well as years before that. Start fresh. Hold hope in your precious heart. Countless amazing moments await you, moments consumed with deep laughter, love, and joy. Blessings beyond your wildest dream will be gently laced throughout your year. Cherish 2017. Allow it to be one of the best years every. There is plenty to learn.

Don’t attempt to plan out every second of the year.  Take things as they come, simply, one moment at a time. Don’t become consumed with perfection. Allow bitterness to be washed away from your heart. Don’t harp on the negatives.

Look for ways to bless, encourage, and love others. You are an inspiration. The small things you do to brighten another individuals day does matter more than you understand. Right where you are today, you are making a profound difference in the world.

You have what it takes to thrive this year. Allow yourself to dream again. You are going to do amazing things, my friend.

May the Lord overflow your life with joy, blessings, love, and goodness this year. May he guide your every step. May you grow closer to him daily. May you embrace every moment. I hope you are able to love life and understand how valuable you and your life is. May you fight with all you’ve got against your illness. May you hold onto hope when the world seems to be caving in around you. You will accomplish breathtaking things this year. You will make a difference. Your precious story will bring hope, comfort, and encouragement to many people.

When Chronic Pain and Illness Take Everything Away: How to Mourn Our Losses

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When Chronic Pain and Illness Take Everything Away: How to Mourn Our Losses is a practical book for anyone who battles a chronic illness or chronic pain. Esther is an inspirational individual who has thrived in many aspects of life despite chronic illness, without a doubt she is a role model. Reaching out as a compassionate friend she gently teaches her readers about the grieving process and coping with chronic illness and chronic pain. She is transparent with her faith journey as well as her struggles and victories.

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Grief is an overwhelming aspect of chronic illness that threatens to take over. It breaks a person down. Those facing chronic illness and chronic pain grieve the person he or she was before the pain, their past, broken relationships, shattered dreams, and the person they had hoped to become. Chronic illness alters every element of life. At times, with the pain and additional symptoms, those with chronic illness don’t want to deal with the emotions. However, emotions are healthy and a part of life.

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Personally, the emotions tend to hit me like a ton of bricks in a delayed reaction. Grief with chronic illness was no different. I get consumed with daily life not processing what I am going through on an emotional level. Maybe you can relate. Once the emotions hit it is overwhelming. I officially got my diagnosis in my late adolescent years. I took a season to grieve all the things I missed out on like prom and mission trips I had planned out. That season I grieved the friends I lost.

I have worked through a lot of the grief but there is still some work to be done. Support is essential when working through it. This book provides a positive outlet for grief. One of my favorite things is that there are writing prompts to assist the reader in constructively working through emotions.

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Amazon description: “Chronic pain, illness, and disability take so much away. Sometimes it seems as though they take everything we have ever loved and held dear.

Our physical abilities and our jobs. Our current passions and future dreams. Our finances and our friends. Our sense of community and our ability to engage the world in ways we could before.

Chronic pain takes away our sense of self and who we always thought ourselves to be. How in the world are we supposed to deal with this fact?”

Make sure to pre-order your book here! In addition, feel free to drop by Esther’s blog: Life in Slow Motion.