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!

For When I Am Weak, I Am Powerful: Finding Peace With My Disease

I am honored to introduce to you a beautiful Lupus warrior. Aliccia is sharing an amazing post with us in honor of Lupus awareness month. Please share to help us raise awareness! Who better to tell you more about this courageous warrior than Aliccia herself. A huge thank you to Aliccia for sharing some of her story with us.

Hi! I’m Aliccia and I’m 24 years old. I love tea, Japanese cars, Netflix, good books and cold weather. I’m a Californian currently living in Texas with one fur baby named Takata. I like smiling, and I am proudly one of Jehovah’s Witnesses. I’m obsessed with galaxies and I like to write on occasion.

 

For When I Am Weak, I Am Powerful: Finding Peace With My Disease

By: Aliccia Rico

 

 

 

My quest started in late 2015, on a cold November morning. I couldn’t take the pain and discomfort of being in my own body anymore. Selena Gomez had been all over the media talking about how she had a disease called Lupus, and I’d been battling some sort of illness that oddly sounded just like the one she’d been interviewed about. It seemed as though I’d been dropped off in the wilderness and told to make the best of the situation… Even though the joint pain and my hair falling out drove me crazy, almost to the point of a nervous breakdown. I’d joke about being a pro napper, but fourteen-hour stretches wouldn’t even aid the fatigue I felt on a daily basis… Let alone be normal hours of sleep. This wilderness I was in felt isolated from everything I thought I knew about myself, and those around me. Who could I trust with telling about this thing that has been plaguing me? Am I crazy?

I had been seeing a rheumatologist that never took my symptoms seriously. He had me on a Remicade infusion therapy that made me worse than I was before. It took me three infusion sessions and hundreds of dollars out of my own pocket to leave this office… He even laughed in my face when I was diagnosed with pleurisy at an urgent care. I’d fallen into a depression, even when I started seeing my current rheumatologist who diagnosed me as having “Lupus-Like Syndrome”, she doesn’t want to diagnose me with Lupus officially yet. The light at the end of the wilderness I was in got dimmer and dimmer. It felt as though the life was being slowly drained out of me, and I started giving up all hope that I had.

 

I found myself months later standing in my restroom, my face wet with tears and red from inflammation. The frustration finally hit its peak the moment I got out of bed. My hands couldn’t open all the way, my hair lay in the sink in chunks. I couldn’t recognize who was staring back at me, the breath gone from my lungs. How did this happen? Why did this happen? I threw all the items on the counter onto the floor, screaming at the top of my lungs. I fell to the floor and started sobbing, trembling from confusion, sadness, and anger. I was angry at my body, angry at how much more my hands and arms hurt from my moment of insanity. All I wanted was for all of this to be over. I looked up to the ceiling, my breath catching in my throat as I try to clear my head. My phone had been ringing for the past five minutes, and I didn’t care.

 

Finally, I grabbed my phone as best as I could, seeing a familiar name across the screen. I unlock the phone, my breathing slowly getting back to a normal pattern. I fixated on the words on the screen, making me cry even more.

I don’t know how it feels,
but we’re in this together.
You’re not alone… I love you.

 

I closed my eyes and started praying. The light at the end of this wilderness had been in front of me all along! Years of frustration, agony, and depression began pouring out of me. I thanked my God, Jehovah, for giving me such an amazing person to help me through this hardship, and for never abandoning me. The more and more I poured my heart out, the more I felt the strength building in my bones. The thing about faith is that it’s based on trust, and trust is what I had to give to my God to endure the obstacles put in front of me. That day, my whole outlook on my disease changed in various ways. I put away the makeup that I would use to hide my skin, I chose to smile and not dwell on the pain or weaknesses that I had now become accustomed to.

 

I refused to stay complacent, depressed and have a “woe is me” attitude. I’d read stories online for support with this disease, but none of them were even remotely positive. The whole goal with living with any type of autoimmune disease is to find positive support and know that you’re not alone. I didn’t and don’t want special treatment, nor do I want to be a walking billboard of the typical “but I don’t look sick” movement. I want people to see me for who I am, not the unfortunate disease I have. Facing each day with a prayer, relying on the support of my spiritual family and friends and telling myself I could face the day helped me personally so much.

 

In one of my favorite scriptures in the Bible, the Apostle Paul wrote, “So I take pleasure in weaknesses, in insults, in times of need, in persecutions and difficulties, for Christ. For when I am weak, then I am powerful.” (2 Corinthians 12:10) I take those words to heart because in my weaknesses, I have been the most powerful. While in a flare up, getting out of bed is an accomplishment, making tea is a milestone, getting dressed is a feat. My faith is stronger than my weaknesses and my illness, stronger than the anxiety and depression that I face, my faith gives me the strength to walk when I am so physically tired that I want to collapse, it gets me through each day.

 

That day I had my breakdown, I was at my lowest point in the wilderness called Lupus. My faith brought me out of the wilderness to a brighter, clear road that showed me that yes, I do have an autoimmune disease, but I can get through these challenges I face (even as simple as opening a jar) no matter how hard they are. Everyone’s autoimmune disease quest is different, everyone copes with things differently and fights their battles in their own way. I admire those who are enduring chemotherapy, those who are mothers and fathers while having a form of autoimmune disease, those ones who need canes and wheelchairs. Your strength is admirable, and in no way could I ever make light of what others go through. We’re in this together, and we will get through it… Day by day.

 

Remember, when you are weak, you are powerful.

 

Illness Awareness Month

Illness awareness months are a big deal providing an avenue for education. Furthermore, it gives those enduring the illness a set apart time to celebrate all the victories they have had over their illness. It seems more socially acceptable to take off the healthy person mask revealing how life is with a monster on the loss inside. Our awareness month also gives us the much-needed reminder that indeed we are not alone despite the feeling of isolation. It is a cracked door allowing outsiders to get a tiny glimpse into living with a chronic illness.

May is one of those months that someone was like let’s see how many illnesses we can raise awareness for in this month and they might have been a bit overzealous. On one hand, it’s great, especially if the majority of your illnesses have the same awareness month. On the other hand, it is a bit much in a short month.

With a complex illness, you could easily take a year or more talking about the illness, testing, medications, and daily living. Times that by over 12 is hectic. To complicate things a bit more the majority of us have more than one chronic illness!

• American Stroke Awareness Month (promoted by the National Stroke Association)
• Arthritis Awareness Month
• National Asthma and Allergy Awareness Month
• National Celiac Disease Awareness Month
• Hepatitis Awareness Month
• Lupus Awareness Month (promoted by the Lupus Foundation of America)
• Melanoma/Skin Cancer Detection and Prevention Month
• Mental Health Month
• National High Blood Pressure Education Month
• National Osteoporosis Awareness and Prevention Month
• Preeclampsia Awareness Month
• Inflammatory Bowel Disease: Chrons & Ulcerative Colitis.
• Fibromyalgia
• Ehlers-Danlos syndrome

I currently have a diagnosis of the following just from this list: Lupus, Ulcerative Colitis, Osteoporosis, Arthritis, and Asthma. In addition, I might have Autoimmune Hepatitis and Ehlers-Danlos Syndrome.

I always like to challenge everyone to learn one new thing in May about one illness. I am a strong believer in education others about chronic illness. I have encountered medical professionals who have been in need of education (I am not trying to be rude in any way). I have had people in the medical field ask me what’s Lupus? A basic understanding is helpful. Knowing just a little bit helps, even if you are not sick, for the day you encounter someone with an invisible illness.

I could go on all day on this topic, but I won’t as I am sure you have plenty on your to-do list today. Have an amazing day! Be sure to Like Chronically Hopeful on Facebook and subscribe to this blog! There will be a handful of guest bloggers which I am SO excited for!

Dogs!

This took much longer than I expected to write. Many people on the Chronically Hopeful Facebook page were interested when a service dog post went up about a month ago. Please understand that I have done research to the best to my ability. This is just a general overview. There will be additional service dog posts in the next few months.

There is a substantial difference between a service dog and a pet dog in the eyes of the law and social norms. Let’s begin with the basics. A service dog is for an individual with a physical disability.  These dogs are allowed to go anywhere and everywhere their human goes.Assistance Dogs International elaborates on this, “Service Dogs assist people with disabilities other than vision or hearing impairment. With special training, these dogs can help mitigate many different types of disabilities. They can be trained to work with people who use power or manual wheelchairs, have balance issues, have various types of autism, need seizure alert or response, need to be alerted to other medical issues like low blood sugar, or have psychiatric disabilities. These specially trained dogs can help by retrieving objects that are out of their person’s reach, opening and closing doors, turning light switches off and on, barking to indicate that help is needed, finding another person and leading the person to the handler, assisting ambulatory persons to walk by providing balance and counterbalance, providing deep pressure, and many other individual tasks as needed by a person with a disability.” There are many tasks a service dog can be trained to do. Additionally, service dogs can be paired with humans for autism and hearing.

Your pet dog is not allowed to accompany you in public without a specific reason. Many view a service dog as medical assistance or even medical equipment.

Service Dog Central provides some clarification on the differences between psychiatric service dogs and therapy dogs. “A therapy dog is an individual’s pet which has been trained, tested, registered and insured to work in a hospital, nursing home, school, or other institutional settings. The therapy dog and his partner visit to cheer patients, to educate the community, to counter grief and stress, and generally be good canine ambassadors within the community. Most therapy dog partners are volunteers, but some states recognize professional therapy dogs partnered with therapists and other mental health professionals.”

Psychiatric Service Dogs are generally for people with a mental impairment (these words are chosen to line up with the laws that are in place). A mental impairment in the case would include mental retardation, organic brain syndrome, emotional or mental illness, and specific learning disabilities. Anxiety, depression, and PTSD would fit under emotional/mental illness. They can be granted access in public places.

A partial listing of therapy dog organizations:
The Delta Society http://deltasociety.org
Therapy Dogs International http://tdi-dog.org
Therapy Dogs Incorporated http://therapydogs.com

On the other hand, emotional support dogs have very limited public access.

On the other hand, emotional support dogs have very limited public access. Emotional support animals provide compassion, support, and friendship to his or her owner. These animals have an irreplaceable role in their human life. Not only do these animals assist their humans emotionally but also improve physical health. Many studies support that animals lower cholesterol, lower blood pressure, lower triglyceride, reduced stress levels, reduced feelings of loneliness, and increased activity. Currently, my cats are emotional support animals. I have a special bond with each. Furthermore, they can sense when I am going to pass out, fall, or shake. Even so, they are not allowed in public. I wouldn’t bring them out in public either because that would provoke anxiety.

A multitude of agencies is out there. My first recommendation is to speak with your vet if you have one. Each agency is different. However, most share that the waiting list is long. Comparing agencies is vital. Furthermore, get as much information as possible on each one. Due to this reason, some people also find training agencies. Either your current pet dog (if he or she is qualified) or adopting a dog than the trained works with you both.

Some additional agencies include but are not limited to:

NEADS

NEADS (National Education for Assistance Dog Services, also known as Dogs for Deaf and Disabled Americans), is a non-profit organization and is based in Princeton, Massachusetts. Our Service Dogs become an extension of their handlers and bring freedom, physical autonomy, and relief from social isolation to their human partners who are deaf or have a disability.

Accredited by Assistance Dogs International, the internationally recognized governing body that establishes industry standards and practices, NEADS offers a wide spectrum of Assistance Dog services, including: Deaf & Hearing Loss, Combat Veterans, Physical Disability Classroom, Therapy & Ministry, Children with a Disability Children on the Autism Spectrum, Deaf & Hearing Loss, Veterans, Physical Disability and more.

Assistance Dog’s International can help you find a program closer to you. They have a variety of resources.

Service Dog Trainers A list of trainers across America.

I hope this information is helpful. Please share your pet’s name in the comments!

 

College Chatter #Liberty

Stability. It is something most people crave. A schedule to glide through day after day it might sound boring yet there is comfort in the familiar. When one has stability he or she can  plan to do things.

This is one of those things you don’t realize how comforting it was until it vanished. Stability takes on different meanings for a healthy person compared to someone who is chronically ill. Stability is one thing I currently do not have enough of.

This past May I was able to complete my Associates Degree at my local community college. I had been the first student to complete a degree online. By the way, if a school does not have an established online program I do not recommend going that route. By God’s amazing grace, I was able to thrive, however, there were times of extreme frustration that could have been easily avoided.

I had been hoping that my health would be more stable than it is currently. I am still struggling with abnormal POTS symptoms such as tremors, collapsing, and slurred speech. And of course, battling my immune system.

I am beyond thrilled to be continuing my education through Liberty University’s Online Program. There is a wealth of resources such as touring and an online library . The online program is split into different terms in each semester. There are eight weeks of two or three classes than eight weeks of a different set of classes. I am entering into week two of developmental psychology and contemporary worldviews.

In addition, to the stellar academic program and access to online chapel Liberty also offers an online hangout for online students to interact with one another. It is meant to be a cafe type setting. It  might not be ideal, but I will take what I can get at this point, which I am sure any spoonie would understand, as many feel like they are starving for social interaction.

As a new academic school year arises, I want to remind you, there is hope for every student, there is hope for everyone, even you. “People do their best making plans for their lives, but the Eternal guides each step.” Proverbs 16:9 The Voice In general, we are more capable than we give ourselves credit for. A little encouragement goes a lot farther than imagined and baby steps are actually giant leaps. 

More Than an Accomplishment

Good Morning Warrior,

We compare ourselves from the time we rise in the morning till our head hits the pillow at night. Comparison feeds us lies. Consumed with thoughts of never living up to expectations. Negativity becomes the dictator of our day.

Your identity isn’t in the tasks you accomplish. It isn’t in the things yu can or cannot do. Your identity isn’t the symptoms, pain, medical test, or diagnosis. It isn’t rooted in other people’s options or the things you have loss. You are not defined by any flaw.

I wish you could see what I know, the beauty that radiates from your heart and the way your smile glows. The hope that you anchor in others. You are cherished, valued, and worthy beyond words. Your purpose is amazing. You are making a difference. You are changing the world. Keep pushing forward- even if you crawl go forward. You are stronger than any trial. You are not alone. I am cheering you on and wishing you a wonderful day.

Sending Spoons,

Victoria

Pictures of The Past

A picture is worth a thousand words along with a few dozen memories and emotions. Capturing the past the heartache of what once was bubbles over.  Sometimes, I avoid looking at my photos, but other days the temptation of a walk down memory lane wins. The days when laughter was plentiful and sleep was not vital.  Staying up half the night with friends was normal. And of course, anything seemed possible. Not knowing that all too soon minor aches would explode into full blown take over your entire life chronic illness.

I look at the girl in those pictures overflowing with laughter and pure joy. The insecurities going through my mind as a teen now seem silly. Things weren’t perfect, but they appear that way. The past usually seems easier as we look back.  There are still days I miss the people who left me. The friends who said they would be there, but left.

 

It’s true, you adjust to the chronic illness life, but little things happen that make you grieve your past. I try to not get carried away in the what if I wasn’t sick game or the things I miss. Everyone asks what you miss most, in reality, I doubt any of us can narrow it down to one thing. I miss how active I once was the energy. Being out in the sun or at the ocean. I miss dancing, hiking, and doing mission work. I miss my hair. Not needing to worry about passing out or running to the bathroom. I miss my old bad days.

All in all most days I do well with being chronically ill emotionally. I have adjusted and know in my heart that God will use all the pain, symptoms, and every other little chronic illness thing for His glory. He has allowed Lupus and these illnesses to be a part of my life, therefore, I am okay with where I am. Yet, I am still human. I become anxious, overwhelmed, grieve, and ride the roller coaster of emotions. After last April, my emotions went on vacation, but they are back and we are learning how to live together once again.

To be honest, most days are hard in some capacity. Currently, this includes minor meltdowns, severe chest pain, dizzy spells, joint pain, and bladder pain. I have another halter monitor (I will do a review- if I don’t throw it in a lake first). A bladder infection with a side of kidney stones. To top it all off my summer class final is coming up. My liver is holding up though I am cautious due to the fact I need to taper off steroids.

This post is a bit long, but I will be doing a Bible Study update post to let you know more about online Bible studies, which I am excited about!

Can you relate to anything in this post? If so, let me know in the comments! You are the reason I share about my life as a spoonie.