Diagnosing Lupus

There wasn’t a defining moment or even chapter in my life pointing to when Lupus invaded my body.  The pain began at age six. I quickly learned how to fake well. Overall ignoring the pain. It was mentioned off and on through the years to my pediatrician. No one was persistent with any of my symptoms or complaints. My first severe flare up was at nine years old. I had back to back ‘viruses’ blamed for every intense symptom. I was put on homebound, unable to go to school. The older I got the sicker I got. The more intense the pain. The more symptoms appeared.

I longed for a diagnosis. For someone to take me seriously. I was told countless times I was too young to be in so much pain, too young for a chronic illness. The first rheumatologist I saw did no testing, yet placed me on a medication. At first, I was relieved and full of hope. That is until I began having an allergic reaction. The doctor insisted on increasing the medication. I began having psycho seizures and stopped taking the medication. I saw a few other rheumatologists. Everyone eagerly promises to get to the bottom of my case at the first appointment then quickly becomes discouraged telling me they are clueless or there is nothing wrong with me.

One day I was discussing my frustrations with my cousin. She asked me if I had been tested for Lupus. I had no clue what Lupus was, but I had not been tested for it. She advised I check out the Lupus Foundation of America. Which of course, I did that evening and I was in awe. This illness was a perfect fit. It described every wacky symptom I had. From that point forward I did research on Lupus and spoke with the foundation several times learning as much as possible.

My symptoms mirror a perfect textbook case. In the beginning of my case, I believe due to my age, my labs were not always positive. I have had some of the top doctors on my case all of who believe firmly I have Lupus, but the way my body functions is different from most people. I am not normal by any standards.  After a long battle, I got my diagnosis. As soon as I received it I asked for it in writing. I switched doctors due to going away to school then switched again due to getting to sick and coming home. I had a doctor take me off all my medication including Plaquenil. The doctor told me I just had Fibromyalgia. He sent me to a Fibro doctor claiming she was the best in the field and she would agree with him. Well, that backfired for him. She told me I was a Lupus patient and needed a better doctor. She quickly got me into the team of doctors I am with now.

I switched doctors due to going away to school then switched again due to getting to sick and coming home. I had a doctor take me off all my medication including Plaquenil. The doctor told me I just had Fibromyalgia. He sent me to a Fibro doctor claiming she was the best in the field and she would agree with him. Well, that backfired for him. She told me I was a Lupus patient and needed a better doctor. She quickly got me into the team of doctors I am with now. Though, we frequently become frustrated still with my case and have different options I love my team of doctors. Having good doctors is a true treasure. Knowing that they will listen, are trustworthy, and will try to help makes things slightly less stressful.

I came home a few weeks early from college my first semester with the plan of getting things under control and then going away again the following semester. I found out I had severe double pyelonephritis (kidney infection). It lasted a little over four months. My body has not been the same since the infection.

I thought knowing the name to the monster reeking havoc in my body would be my big break though, the end of my major struggles. I thought I would get my life back.

It is also a battle keeping a diagnosis. Medication makes labs look pretty than the doctor begins to overthink.It seems when blood tests are postive they are never positive enough. When additional test records something alarming it is brushed off to the side. It feels like a game. One I don’t want to play. My symptoms equal the classic Lupus textbook case, but my labs do not always reflect this.

Diagnosing any autoimmune disorder is a complex task. Even in the medical field, people are not educated enough about autoimmune diseases- especially when it comes to Lupus. This is one reason awareness months are vital. Not only do those who suffer with the illness get support and educated, but doctors have new chances to become educated as well as people not directly affected by this particular illness.

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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.

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?

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. ❤

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.

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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

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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.

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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.

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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.

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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!