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!

My Invisible Fight

If you know me, you know I am chronically ill. My illness does not define who I am but it is a part of me. I look at as a trait not necessarily positive or negative. Like having brow hair, an oval face, or having dimples. My invisible fight. Words that empower. Words that inspire. Words that sum up my life over the past few years.

Without a doubt I have become a fighter, in this invisible fight. Few people know the details of my fight. Chronic illness is much more than what is seen on the surface. The battle is within. Falling apart only behind closed doors.

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I had many encounters with terrible doctors. No one took me seriously (I still struggle with this today). Doctors downplayed any concerns. My mom was my advocate, my voice. Growing up I was dangerously shy. If someone were to look at me crossed I would shrink back into my shell. Hearing my middle name released a waterfall of tears. Speaking up, was terrifying for me. Gradually I began to find my voice and become my own advocate. I have educated myself on treatment options, my illnesses, and everything medical that is relevant. I have learned that I know my body and my illnesses better than any doctor. After all I am the one who lives with it every moment of every day.  I fought to find my voice. My mom and I fought to find good doctors.

My health began to spin out of control in high school. It became evident that something was really wrong. Little by little new symptoms would develop. A new rash, unbearable pain, sun sensitivity, collapsing, weight loss, hair loss, and that was only the beginning. Medical testing became the norm of my life. Blood work that included more than thirty tubes of blood, MRIs, x-rays, GI studies, CATSCANS, scopes, EKGs, EEGS, and other medical tests that I cannot recall the names to. In addition, I had five operations in high school. The operations ranged from removing my tonsils to removing cysts to explority surgery.I thought I had hit rock bottom my junior year of high school, after an encounter with a medication that caused seizures. Little did I know rock bottom was much further down. Little did I know that I would long to go back to those high school years and deal with that pain and those symptoms.

I felt like the pause button has been hit one too many times. I have been home bound many times over the past six or so years. Every time play was hit and I began to recover, get stronger, and move forward pause would be hit yet again. It seems like each time my life is put on pause gets longer and finding the play button becomes more difficult. 

My invisible fight was taken to a new level in college first due to pluricy. Then to finding bloody urine that indicated a sever double kidney infection lasting four months. I was taken off my Lupus medication which gave Lupus permission to recklessly attack. I began seeing doctors every few days, had medical testing weekly, and became a regular at urgent care. I landed myself in the cardic unit last September. I continued to get worse. More testing. More doctors. More pain. Hopeless.

My symptoms shifted. My abdomen began to give me issues again. This time it was worse. Abdominal swelling to the point of looking at least six months pregnant was my newest symptom.  I began to question how much more my body could take. How many more days of intense pain that sent me to bed screaming and doubling over. I was taped. Giving in to the fight was tempting. No one had answers. No one knew what to do.

Things were terrible. Eating was difficult and staying hydrated was nearly impossible. The fatigue was thick yet my body wouldn’t surrender to sleep. I had to rest going up or down the stairs. Breathing was a chore. Shower a hazard. Daily tasks seemed like huge projects. Some days I couldn’t bend down to put on my own socks.

Finally it happened. This past April, I hit rock bottom. I could barely move. The pain and fatigue were more intense than I can describe. I was admitted to the hospital for ten days. https://chronicallyhopeful2014.wordpress.com/2015/05/02/hospitalization/

Looking back I believe that being admitted was the best thing for my health overall. I was at rock bottom. It was more difficult to keep moving forward than I can describe.

When I received the message on Chronically Hopeful inviting me to help and participate in Invisible Illness Awareness week I was shocked and over joyed. I firmly believe that sharing our invisible fight stories is vital. Someone had shared the fight song. I immediately connected with it and shortly after fell in love with the lyrics. I feel like that is where I am in my invisible fight, taking back my life. Taking back life after dramatic pauses is difficult. At times it is painfully slow. Progress seems invisible.  Taking back my life and continuing to fight is a daily decision and struggle. I am mastering a new balance act with my invisible fight and the rest of my life.

My invisible fight has probably been the most difficult fight of my life. I know it will continue to be a tough fight. It has caused me physical pain, heartbreak, taken me on an emotional roller coaster, played tug a war with my faith, caused me to lose friends, and lose much more. Yes, there are countless negative attributions of my invisible fight, but I am sincerely and deeply grateful to be in this fight. First of all I am grateful because I believe that God will use my invisible fight for his glory. Through my invisible fight I have matured as a person and as a Christian. I have learned so much. I have meet some of the most inspiring people. I have had the honor of running Chronically Hopeful and helping with the Invisible Illness Awareness Campaign. My prayer is that my invisible fight will be a testomy, inspiration, and blessing to others.

She is the Clay

Tears have made her face moist

She’s longing to hear your voice

Seeking guidance to make a choice

She’s waiting day after day

Knows you are the potter and she is the clay

Things will fall into place in your time

Not alone in this climb

You’ll get her out of this bind

Let her know you’re near

There’s nothing to fear

Make her path clear

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Prednisone: Part Two

Prednisone: Part Two: My Experience

I have been off and on Prednisone for about a year and eight months. The majority of the time I was on a low doses, less than 20 mg. My first round was a two-week quick taper for pleurisy. I did amazing and felt great. The only down side was I was moody. I cried a lot and had anxiety.

I was put back on a low dose for Lupus. I experienced different side effects which included moodiness, moon face being a neat freak, and some insomnia. My doctor attempted to taper me, but at the time I had a sever kidney infection. Tapering off of Prednisone while flaring is not an easy task. I was later informed that Prednisone was the only thing that kept me out of the hospital. Though I was in Urgent Care every day to every few days for IV antibiotics. In addition to the lovely infection that made itself at home in both of my kidneys, I also had a surplus of kidney stones.

Some doctors enjoy playing the lets diagnose you again game, which for the record I am not a fan of. I was taken off all of my medication and my body went hay wire. After a few weeks I tried to get in to see my doctor but was denied an appointment. A Fibro doctor I had been seeing, who ruled out Fibro, helped me get in with a new doctor. I was diagnosed for the eighth time with Lupus. Along with my other Lupus medication I began a low dose of Prednisone and Benlysta. My doctor attempted to trapper me, but my body thew a fit every time. I was able to get down to five mg.

In the hospital the doctors tried every medication they could think of. When nothing helped they began discussing the possibility of increasing the Prednisone. After days of no improvement, many debates among the doctors, and discussions I was put on 60 mg of Prednisone. The relief was almost immediate. The one doctor was shocked how well and quickly my body responded. The plan was to do a five mg taper for a month then follow-up with the gastro.

I had gotten down to about 50 mg, with no additional Lupus meds other than Plaquenil. I woke up a Monday morning at four am. My pain was intense, close to breaking the pain scale. I tried to use the bathroom, bending was terrible. I felt like my keens were going to break from the amount of pressure and pain. I tried icy hot and triger balm. I attempted to lay back down, but couldn’t. It hurt to sit just as much. The pain in my joints and abdomen was terrible beyond words. Around six am I went to my mom, I couldn’t breathe the pain was so intense. I called the on call doctor who was no help at all. Hours later after a few more phone calls I was fit into the doctors schedule. She increased my Prednisone to 60 mg.

It’s been about a month. This is the longest I have been on this high of a dose. I still have difficult days but the pain has greatly improved. My moon face seems to grow daily. It’s gone from assisting me in looking healthy to, “What  happened to your face?”. Yes people do ask that. I have gained weight. Though now I am close to what I should t I am self conscious about the weight gain. That probably sounds weird. I have grown accustom to being under weight. I do have some insomnia and weakness, I would love to blame it on the Prednisone, but I am not convinced it is the Prednisone. Overall, my body responds well to Prednisone, almost too well. I am extremely grateful for the relief and assistance it provides. I look forward to getting off of Prednisone. However, I also dread tapering. Personally, I believe it will go much smoother if my treatment plan is tweaked.

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Share your experience with Prednisone.

Stomach Flares & Food Battles

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I have struggled with eating, due to my stomach for years. I found out I have an allergy to dairy at nine years old. Adjusting to that was a challenge because I loved dairy, but I adjusted fairly well. Growing up I was always on the thin side. Not under weight, just thin, until I hit high school. It is hard to remember if my stomach issues began again Freshman or Sophomore year. My health declined in high school, it is difficult to recall which symptom began when.

I was never a big eater but I ate enough. Then I began having difficulty eating. I would live in the bathroom from eating. I could not pin point one group of food though. It was food in general. In the beginning the stomach flare ups were every few months. Then the flare ups got closer and closer together and the pain became more sever. Before Prednisone, the flare ups began to scare me a bit. I was under weight. I could not believe my eyes when I saw my own picture… I looked like a skeleton. I am a tall girl, 5’8” to be exact. If I was shorter weighing 100 pounds wouldn’t be so bad. I knew that losing weight was dangerous at that point. I did everything in my power to maintain my weight. I tried eating every few hours and included high calorie things in my diet. It was a battle to maintain my weight.  When I began my relationship with Prednisone, I continued losing weight. Now on 60 mg I gained a couple of pounds, mainly moon face.

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In the beginning I thought I had IBS. As time flowed by, I knew it wasn’t IBS. My symptoms got drastically worst last year. Going to the bathroom 30 times a day and having bloody stool. The Gastro I saw order the wrong tests and offered no insight. I felt hopeless with my abdominal issues. The intense pain and stomach flares continued. I knew there was something wrong. I never fit nicely into diagnostic criteria. If I had a penny every time I heard, “You are complicated,” You are different,” Well I’ve never seen a case like this before,” or “I have no idea,” I would be rich or at least have enough money to buy all my college text books. Being unique medically is frustrating. No one wants to be one in a million medically,  but with some of my stuff I am. I had previously seen a Gastro who I loved, however going back was not an option. He wanted to help me but the office did not have the equipment or advanced testing ability.

I was frustrated and irritated with Gastros. I coped the best I could with the flares. About six months ago I began having extreme abdominal swelling. It was not bloating. I  would get so swollen that I looked at least six months pregnant. This was a red flag. I was advised by several doctors to go back to Gastro. Reluctantly I did so. The doctor told me I have IBS, ran a breath test, and offered no treatment plan or advice. This was not the outcome I had hoped for.

A few days before getting admitted to the hospital I suspected a stomach flare up. When you feel a flare coming on you always hope and pray that your wrong and it was a false alarm. But sadly I know my body too well. When I suspect something 99% of the time I am right. Which is a blessing and a curse.

In the ER, the day I got admitted, sure enough a stomach flare hit and it hit hard. I am blessed that they admitted me. I don’t know how I would have coped with that stomach flare at home. Fluids intravenously are a life saver! They are truly under estimated. If you follow my blog or Chronically Hopeful on FB you know how the story goes, I got diagnosed in the hospital with IBD. Part of the reason for my ulcerative colitis is lack of blood flow to my intestines. Some blame this completed on Lupus. Me? I believe it is a lovely combination of Lupus and POTS.

The picture at the top of this post is exactly how I feel, “Look at all this food, I can’t eat.” I saw a  dietitian in the hospital. She was nice, but honestly not helpful. No one has been much help when it comes to my diet. They tell me everything I can’t eat but don’t give any suggestions of what to eat. Actually one of the doctors in the hospital told me that they weren’t considered about me eating, it wasn’t a priority. No offense but I think (especially with POTS) that eating is important.

There are a handful of foods that are my ‘safe’ foods. Eating is a challenge. I am not allowed to have fiber, whole grains, or dairy. I need to limit protein.  I get frustrated often when I need to eat, because of the simple fact I don’t know what to eat. The healthy foods I enjoyed eating are now off-limits like salad. I have been trying the past few years to improve my diet, eating less processed foods more fruit and vegetables. Now I can’t do that. A lot of vegetables are too hash on my stomach because of the ulcers. Sometimes I feel like eating but I am hardly ever truly hungry. I eat because I know I need to, my body needs food.

Trying a new food is a game. The doctor told me to try stuff and if you have intense pain and live in the bathroom don’t eat it again. I try to reintroduce foods one at a time every other day to every few days. This way I know if a particular food bothers me and I am not completely miserable (hopefully). I have to admit, at times I eat stuff I know will make my stomach hurt because I don’t know what else to eat. Prednisone cravings do not help.

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Today, I tried something new and I regret it. I was annoyed because I was feeling pretty good until I ate lunch. Good days have been hard to come by. So when I have a decent day I love to take full advantage of it. Right now, eating something that upsets my system not only gives me a stomach ace but a back ace and severe weakness.

Last week I followed up with a Gastro that works with the Gastro I saw in the hospital. Sadly I had to switch due to the doctor not taking my insurance. Thankfully I ran into the Gastro I had in the hospital and he will be speaking with the new one. I feel much better about things this way. In a week I am going back to the OR for an upper endoscopy. Hopefully, after this I can stay out of the OR for a bit. I am not expecting them to find much, due to the fact I am on a lot of Prednisone. I know what to expect, this will be my third upper endoscopy.

Of course I am grateful for decent moments and days. I am hoping one of these flares will calm down soon. Hope you are doing well. Wishing you pain-free days, filled with blessings. Sending spoons, prayers, and hugs ❤

A Caregivers Perspective. Part One.

Being a Mom of a Chronically Ill Child

Written By: Eileen Guyadeen

Being a caregiver of one who is chronically ill comes with countless challenges. Caring for an ill child is one of the most difficult things to do. Those who are ill rely completely on their caregivers. Being a caregiver can be a lonely, overwhelming, and blessed road. This post is to honor all caregivers, especially my own, my mother Eileen Guyadeen. Without her I would not be where I am today or who I am today. I could never express enough gratitude for all she has done for me.

-Victoria

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My daughter Victoria who writes this blog for chronic ill people, ask me if I would write something for it. I will start at the beginning, Victoria was born on my birthday which is January 28, 1994. She was a healthy baby at 6 lbs 8 oz. A blessing in every way possible, especially when my own doctor told me it will be nearly impossible for me because of myself having endometriosis, and like I told the doctor he is not God, and I truly believe with God all things are possible. My pregnancy went pretty well, listening to my doctor and doing whatever I needed to do to have a healthy child.

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Victoria was an active child by the time she was two and a half I had enrolled her in ballet classes, and she simply loved it too. She was small for her age and I kept her first ballet and taps shoes for my keepsake, because the dance teacher had a hard time finding things to fit her. She always loved playing outdoors all the time, during the summer she played in her pool, with her toys, and even loved reading outside all thru the beginning of her teenage years. In every way possible Victoria was always an active child. However over the years since she was a baby Victoria always seem to get a lot of viruses, doctor couldn’t always explain it to me why she did, always missing a lot of school. I remember by the time her ninth birthday rolled around she had a lot of stomach problems, she was out of school for three months, I finally started to record everything she ate and it was the diary that was making her so sick, so I cut it out from her diet. I spent plenty of times in the emergency room with her stomach problems never to know what was going on, and more important never an answer for what was going on.

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By the time she was in middle school when I took her to the doctor for the problem, her doctor thought she was trying to get out of going to school. I brought in her report card showing this child was an honor and high honor roll student, and loved being in school. Thru out high school my daughter’s health got worst, going thru five operations in four years. Her health got worst by the time she was a junior in high school that she was on homebound for school. By the time her senior year was about to start the principal of her high school share with us if Victoria miss more than ten days of school she would not be able to walk at her graduation. So with that statement Victoria ask me if she could Cyber School her senior year, and I agree that she could. She finished her senior year with 3.7 GPA, the night of her graduation it was very painful for her to walk at the ceremony, and I cried with her and said I know however you did it with honors in spite of your pain.

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Since Victoria graduated from high school things for her with her health has gotten worst. Doctors never can make up their minds for a treatment plan for her, it makes a person’s head spin. I have been ask so many times, how I do this with my daughter’s health. My answer to the question is my faith in the Lord Jesus Christ. With everyone appointment rather a doctor appointment, a trip to urgent care, test, or even the emergency room, and hospital stay, I carry along with me my Bible, why because I begin to search the scriptures for God’s promises. In the book of Jeremiah 29:11 it says For I know the plans I have for you declares the Lord, plans to prosper you, not to harm you, plans to give you hope and a future.  Victoria is a gift from God and I do believe that he loves her even more than her dad and I could ever love her.  Every time my daughter cries in pain, I say to her that God didn’t give us a spirit of fear, and I can do all things thru Christ who gives me strength (Philippians 4:13) we have cried together, as well as something more important which is to pray together. For God to give her the strength going thru this, as well as wisdom for her doctors, to see what He sees inside of her, because Jesus is the great physician. It is never easy, right before my daughter went off to college I had a meltdown. Yelling at God what did my daughter ever do to deserve this horrible disease, and then finally after I stop being angry at God, I heard a voice in my heart then why my son (Jesus Christ) in your place on the cross, I never ask that question again. I am always asking God for the strength thru all of this, we travel two hours each way to her doctors, and yes there has been many times I am total drain with running back and forth. I also have two other children to care for, which at times I feel as thro I have short change them thru this. I try to remember different things to get me thru, Stop, Drop, Kneel, and Pray, I have relied on God to get us thru this with my daughter. Jesus never promises anyone that once we accepted him as our own personnel savior, that our lives would be easy, he promises , surely I am with you always to the end of time (Matthew 28:20) I have seen my own personnel walk with Christ change for the better. I wanted to show Victoria, as well as my other two children, that life can become very hard for us at times, and thru those difficult time we need to run to the Lord, not away from him. Lean on Jesus and give him our burdens. In the gospel of Matthew 11:28 Jesus says these words Come to me, all you who are heavy burdened, and I will give your rest, Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. For my yoke is easy and my burden light. If anyone ever read the poems Footprints in the Sand, as you read these words it says, Lord you say that once I started to follow you, you would never leave me, so I don’t understand why was it at the difficult times I saw once one set of footprints, and the other times there were two. He replied my precious child during those hard times, it was then that I carried you. So I can picture during these hard times Jesus is carrying my daughter. Victoria is in the process of finishing her second year of college, in which she has been doing on line for a while. In thru all of her pain, doctors, test etc. Victoria has manage to be on the Dean’s list at Sussex County Community College, with a 4.0 GPA, as well as being inducted into the international honor society this past March. In the fall she will finish her BA degree at Centenary College which is not far from us, and then hopefully on to Drew University for her Master degree. Thru all of the medical problems that my daughter has gone thru so far, I have totally relied on my church family for prayer, as well as other family or friends, because pray to me is an essential tool we need to have with our daily walk with Christ. For me thru all of this I continue to walk with my Lord, with prayer, studying the scriptures and being involved in my church and just serving him. I continue to thank God for choosing me to be Victoria’s mom, I have been the one who has been bless. Yes it has been difficult with her disease, you see she has lupus which is an autoimmune disease, however it doesn’t define who she is and that is she is the daughter of the most high king Jesus Christ.

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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.