Lupus

“Yes, you need to know what Lupus is all about, but above all you need the strength and resourcefulness to battle with the wolf in its lair. The wolf will always be with you, but you can put a leash on it and make it heel.”

Lupus is known as the cruel mystery. People have heard of the illness before, but few know what it is and even fewer understand it. The way Lupus presents itself is as unique as our finger prints. Its complexity confuses medical professionals. Researches are working on formatting better testing, finding the cause of the illness, and developing better medication. Many aspects are highly controversial at this time such as causes of lupus and the diagnostic criteria.

So, what is Lupus? It is an autoimmune disorder in which the immune system is over active and confused. Those of us with Lupus are being attacked by our immune systems. It attacks anything from joints to skin to kidneys and everything in between. In a healthy person (or in someone who does not have an autoimmune disorder) the immune system fights off bacteria and viruses. It essentially works endlessly to keep you healthy.

If you don’t have Lupus I urge you to educate yourself, just a little. A little bit does go a long ways.

The search for a diagnosis seems like an endless and hopeless road. From my observations this is true when being diagnosed with any chronic illness, not just Lupus. The more I connect with those who are chronically ill, watch medical shows, or read spoonie stories I repetitively hear the horror of the individual searching for a medical answer. Many factors play into this inadequate testing, lack of knowledge in the medical field, bad doctors, the illness not progressed enough, ect..

If you are new to the Lupie World… Welcome. I know you’d rather not be a part of this ‘club’. I know that there are many emotions swarming you as you attempt to process everything. If you have been searching for answers to your symptoms, having a diagnosis is exciting and a relief in a way. On the other hand if you didn’t have any symptoms and no idea an illness had invaded your body I am sure this is utterly shocking. Where do you go from here? That is the million dollar question. A question that has a thousand answers but has no answer at all.

Allowing yourself to process that you have Lupus is important. I also advise that you educate yourself as much as possible about Lupus. When I got diagnosed I found the Lupus Foundation of America to be an excellent resource. Their webpage is great, in addition you can call them to ask questions. The Lupus Foundation also sent me information about treatments, living with Lupus, doctor information, and a magazine. I am so grateful that the Lupus foundation is the way it is. I cannot say thank you enough for the support and resources that I have received from them.

Life is never the same once you get a diagnosis. For better or worse things need to change. Most people need to adjust their life style, that is not saying that their life style was unhealthy. The life style of a healthy person is different then someone who lives with Lupus because the body needs different things. You will need to change your diet, how you exercise, and learn how to pace yourself. Of course, there is a good chance that you will need medication. Again I encourage you to do your homework. Educate yourself about the medication you are going to put in your body. Personally, I have a lot more confidence in trying a new medication when I know what to expect and the possible side effects.

Learning how to pace yourself is a huge challenge. Learning when you need to push a little harder and when you need to rest. Learning to rest is an obstacle for most people. Resting can feel like a waste of time. However, regardless of how you feel it is  a necessity. Your body needs to rest sometimes and that is okay. Resting can help avoid flare ups.

Lupus effects everything not just your body it effects your life and your emotional well being. It is essential to address the emotional roller coaster. Ignoring it and shoving it under the rug will only make things more difficult. It is tempting to shove the emotional aspect of Lupus under the rung most times, because there are so many other things demanding our attention. Depression and anxiety can be rooted in Lupus. Like any emotional illness sometimes depression or anxiety associated with Lupus can be treated with lifestyle changes other times medication needs to play a role.

Isolating yourself can be easy with any chronic illness. Many of us lose friends. It is difficult to keep in contact with people due to various symptoms, holding a conversation at times is utterly draining. Sometimes people avoid talking to others because of a rudely obnoxious lack of understanding. Even so, we need support. Isolation is not healthy for anyone. Having a support system is vital. In addition, I have found it helpful to find some support online through online support groups or pages an individual can like on Facebook.

I could go on for hours about Lupus and living with it. For now I will try to wrap it up so that this post doesn’t take too many spoons. I hope that you have found something in the post helpful. Welcome to the World of Lupus. You will be an amazing warrior who will demonstrate strength and courage daily. The road a head will be hard, but you have all the strength you need and you are never alone. Your story will give others the courage to keep fighting and to live their life.

How long did it take you to receive your diagnosis? What is the hardest thing about living with Lupus for you right now?

My favorite Lupus Resources:

http://www.lupus.org/

http://www.lupusny.org/

http://www.mollysfund.org/

Pages to like on Facebook:

World According to Lupus

Lupus and Me

Non- Lupus Resources:

http://restministries.com/

http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

http://www.fightlikeagirlclub.com/

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POTS

I am an expert at passing out, it’s a skill that not many people have. Then again most people do not need this skill. I can recall the seconds leading up to each time I passed out vividly. I have passed out well over a dozen times.  I know when it is going to happen. The warning sings are always the same first I feel dizzy, then my hearing fades, weakness increases steadily, then the vision leaves, and boom I pass out. Once the passing out shuffle begins I spring into action. Either telling whoever is around or by getting to the floor as quickly as possible. Usually someone says my name a few times and I’m back. No biggie. Extremely tiring but not tragic.

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October is Dysautonomia Awareness Month.  Postural Orthostatic Tachycardia Syndrome is a form of Dysautonomia. What in the world is it? “Dysautonomia is an umbrella term used to describe several different medical conditions that cause a malfunction of the Autonomic Nervous System. The Autonomic Nervous System controls the “automatic” functions of the body that we do not consciously think about, such as heart rate, blood pressure, digestion, dilation and constriction of the pupils of the eye, kidney function, and temperature control. People living with various forms of dysautonomia have trouble regulating these systems, which can result in lightheadedness, fainting, unstable blood pressure, abnormal heart rates, malnutrition, and in severe cases, death.” Dysautonomia is not rare, at all, it is just rarely diagnosed. Many people live undiagnosed or misdiagnosed.

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The tilt table test is used to diagnosis POTS. Web MD gives this explination of the test: “The test involves lying quietly on a bed and being tilted at different angles (30 to 60 degrees) for a period of time while various machines monitor your blood pressure, electrical impulses in your heart, and your oxygen level.

The head-up tilt table test usually takes one to two hours to complete. However, that may vary depending on the changes observed in your blood pressure and heart rate and the symptoms you experience during the test. Before the test begins, a nurse will help you get ready. The nurse will start an IV (intravenous) line. This is so the doctors and nurses may give you medications and fluids during the procedure if necessary.You will be awake during the test. You will be asked to lie quietly and keep your legs still.”

From my experience the tilt table test made me sick but did not increase my pain. Overall I found the test extremely boring. I was only up a few minutes before I began passing out. They laid me down and pumped me up with saline with extra sodium. The tilt table test does need to be done in the morning.

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The most common types of Dysautonomia are: Postural Orthostatic Tachycardia Syndrome, Neurally Mediated Syncope, and Multiple System Atrophy.  POTS can develop in the adolescent years and some out grow it. In other cases it is a secondary illness and is a chronic condition. Some POTS patients are misdiagnosed with an anxiety disorder. POTS is not an anxiety disorder nor is it cause by one. The role anxiety plays is a symptom. I received my POTS diagnosis almost a year ago. The possibility of me having POTS was mentioned during my Reclast hospital vacation. I had heard of the syndrome, however my knowledge was extremely limited. Of course I researched POTS before my diagnosis was set in stone. Once I learned more about POTS I knew I had it. It was something I lived with, I just had to get the doctors as usual to see what I already knew. My doctor ran the tilt table test. My POTS presents many obstacles daily. It is an incontinence illness.

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Though I like the doctor who is in charge of managing my POTS, most times he is unsure how to help. POTS can be challenging to treat. There is nothing my doctor can currently do other then prescribe a beta blocker for high heart rate. Of course, he advises the normal things such as eat sodium, wear compression stockings, pace yourself, ect…

It has almost been a year sense my official diagnosis. My POTS has improved greatly. This is mostly because of Prednisone. One of the biggest challenges I live with currently due to POTS is various organs not getting enough blood. Again, no one really knows how to help this issue in my body. My balance is off still. Right now it’s great I only fall into walls instead of completely collapsing. Collapsing out of no where is inconvenient and unsafe.

Normal activities are challenging for people with POTS. Being up right, being on their feet for a few minutes, and showering are difficult and sometimes dangerous things.

I watched something on POTS where a doctor recommended anyone with  POTS to wear a helmet in the shower. Comical. And impractical. How would you propose washing your hair with a helmet. Yes, falling in the shower is unsafe but a helmet is not the best solution.

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A lot more research needs to be done in order for patients to receive better treatments. That is one reason raising awareness for POTS and other chronic illnesses is essential. Thank you for reading about my POTS journey. I hope it can help someone or that someone can learn something from this post.

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But You Don’t Look Sick

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“But you don’t look sick..” A saying that chronically ill people hear way too often. For those who have recently meet me I look like a normal 21 year old girl. But my family and church family are able to see the difference in me.

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The girl who stares back at me when I look in the mirror is someone I do not recognize. That girl is not me. She has a rounded face, pale skin, thinning hair, and tired eyes. I am…or in reality was a girl with dark olive skin, bight and energetic eyes, thin, and tall with thick dark brown hair that most people mistake for black. I have changed drastically sense becoming ill. I am not the same girl physically or emotionally. Not all the alterations have been negative. It is difficult sometimes to be so different compared to who I was before I became ill. Medications have altered my body somewhat, but the majority of the physical changes are due to Lupus. At times looking through photos is difficult. I like who I have become. But the physical changes are hard to grasp. My body doesn’t feel like my own… it is like borrowing something that doesn’t fit right. Appearance doesn’t matter as much as it use to. It is more about feeling healthy and functioning; living again. I try to focus on this and the hallmark of what inwardly make me, Victoria. Some days it works amazingly. With no make up and hair up I feel like myself and I feel pretty.  Other days, are more difficult after layers of make up and many spoons wasted tears of frustration wash it away.

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“But you don’t look sick..” is never a comforting phrase. People might think it is a compliment, but it is not. It makes us feel like you do not believe how sick we are. Our outwards appearance, does not reflect the war going on inside of our body twenty four seven. Thankfully the destruction is not visible.

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Those who are chronically ill learn all the make up, clothing, and hair tricks. She learns to fake a smile. To be a ray of sunshine. To pretend to be a healthy girl. Behind closed doors, everything is different. The make up comes off, the hair goes up, pj’s on, and the tears flow. With her head buried in her pillow she wonders how she made it through another day thankful no one saw though her mask. Insiting that she doesn’t look sick only adds to her struggle. Your words weigh more then you know.

Your world drastically changes in every way possible when you are chronically ill. It is like living on another planet in comparison to how thing were when you were healthy. Adjusting is difficult. You need to be patient with yourself. Allow yourself time to adjust to all the alterations your illness has imposed. Remember, that there is much more to you then the person looking at you in the mirror. Yes you might look different and that is okay, you are still beautiful. In addition to physical beauty, you have a stunning personality.

How do you cope with the changes your illness has caused?

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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.

Picking A College

Most of you know that I’m a college student. My academics are important to me. Lately i have been struggling to keep my head above water in regards to my school work. My abdominal pain has been getting worse daily. It has taken over my life.

I have always enjoyed school over all. Of course there are days I don’t love it and subjects I don’t like.

Preparing for college was a challenge due to my illness. I began my search early but I wish I started sooner. I choose a college three hours away which was not ideal. I had e expected to be able to go to school full time and have a job. I thought once i began medication i would improve quickly. I had unrealistic expectations. I began school two months,after my fifth surgery. I don’t recommend this.

My parents add I soon realize me going to school so far,away want a good idea. My heath got worse. But i was determined to finish the semester. Over Thanksgiving break I had blood in my urine…game over. I knew I couldn’t go back to school. I completed my first semester online. My plan was to get better over break then go away to school again closer to home. However, with a sever double kidney infection that was not an option. Recently I scheduled my classes with the ‘local’  (which is an hour away) community college. I tired to be happy and excited about the change. I greeted the semester with a good attitude and an open mind. The semester busted at the seams with obstacles. I had to receive antibiotics though an IV, a bladder scope, and a few dozen kidney stones. The rheumatologist I had been seeing took me off of my Lupus medications, which complicated things.

I had been able to get ahead with my classes. The flexibility with online learning is great. I completed the semester with a 3.5 GPA. I had been told that I am not a smart person through out my school career. I never expected to do this well in college. Last semester I ended up with a 4.0 GPA which I have mentioned before mainly because I am so surprised by it.

Entering college is scary and ecciting.  Picking a college and filling out the paper work can be stressful. It is a challenge to find the prefect school for you. I don’t know about you but I don’t know how I’ll feel five minutes from not never mind in a few months to a few years. I recommend beginning your college search as early as you can, this way you will have plenty of time to consider your options and it will be less stressful.

The biggest question is: is it realistic to live on campus (if that’s one of your dreams). It is best to discuss this with whoever helps take care of you, anyone in your support system, a school counselor, and your doctor. You need to make sure your health is stable enough to make that huge jump to living on a college campus. I would recommend either picking a college fairly close to home or near relatives or a close family friend. This way if you end up in the emergency room, are going for extensive testing, or need support someone you know well and trust fully is there for you.

In addition to being close to someone who knows your medical history and you trust there are many other factors to consider when choosing a college.

Some questions to ponder while searching for what college you will attend:

  • Consider what the area is like compared to wear you live. Is it city, suburban, or rural? Will living in the city for example affect your health? Personally I cannot live in the city due to the air and noise.
  • How close is the nearest hospital? What type of a reputation does it have?
  • Will you need to switch doctors? (If so, it is best you do research on what options you have for a new doctor. You want to be sure they know what they are doing and can properly care for you.)
  • Where is the pharmacy?
  • How long can I expect to have insurance coverage? (For example, up to what age am I covered? Do I need to be a full time student to receive or “get” full coverage?
  • Is there a nurse or licensed practitioner?
  • How big is the campus?
  • Where will you be living? Is the dorm building handicap accessible?
  • How many people will you need to share a room and a bathroom with?
  • Whats the food like? Would your body be okay with what the serve?

Let me know your thoughts in the comments! If you are in college currently or have already graduated please share other things to consider when picking a college.

Invisible Illness Awareness Week

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There is more than meets the eye, don’t judge a book by its cover. Sayings we can spit out weightlessly in a moment notice. Our brains have memorized the words yet in many situations do not comprehend the depth of these words. Riding through the motions of life we jump to various conclusions based merely on what our eyes rely to us. We are quick to jump to conclusions and far too judgmental.

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Invisible illness awareness week is essential. “But you don’t look sick” is one of the most over used phrases in the Spoonie world. Our outward appearance does not clearly display the war raging inside our bodies. Many individuals with chronic illnesses lose their friends, are treated poorly by family members, and receive rude comments from strangers. There is a lack of understanding and a lack of empathy. People make assumptions based on appearance and many times are unwilling to listen to what is really going on with an individual who is ill.

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Invisible illness awareness week is a campaign founded by Lisa Copen over ten years ago. Lisa is the inspirational founder of Rest Ministries.  Invisible illness awareness week empowers those who live daily with a chronic illness.  Additionally it raises awareness for countless invisible illnesses. “96% of chronic illnesses are invisible.” This campaign strives to make the invisible…visible. While an individual might not see our illness that does not make it any less real. It is very real. A battle that must be fought without ceasing.

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My heart is heavy with passion for the invisible fight. Raising awareness for chronic illness is vital to me. I believe that educating people about chronic illness is essential. Knowledge is power. Educating people who don’t have illnesses enhances their empathy for those who battle chronic illness daily.

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The campaign and raising awareness in general impacts those who are chronically ill as well. It is empowering. It also encourages those who are chronically ill to keep fighting. Raising awareness reminds people that they are not alone, they are not the only one struggling with illness and the challenges it presents.

I feel obligated to share my story and assist others with chronic illness in any way possible. My hope is that others will be encouraged, learn, and find support through my openness. I am bursting with excitement for invisible illness awareness week. I hope you will join me in learning about invisible illnesses, celebrating those who have overcome obstacles their illness has presented, and sharing inspiring stories. Together we can put a stop to the assumptions of invisible illness. We can make invisible illness visible.

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This year invisible illness awareness week is September 28th – October 4th. The theme is My Invisible Fight. I will be posting invisible illness awareness things here and on my facebook page Chronically Hopeful through out the month.

Join us on Facebook:

https://www.facebook.com/InvisibleIllnessWeek/timeline

https://www.facebook.com/chronicallyhopeful17?ref=hl

There are many effortless ways to get involved in invisible illness awareness week. Check out and like both the invisible illness week and chronically hopeful facebook pages. There will be a wealth of resources on each page daily. Uplifting pictures will be shared, beautiful stories, and articles. There will also be online conferences throughout the week.

http://invisibleillnessweek.com/

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I adore tea. I have found it useful for various things with being chronically ill. It has many health benefits. It is the only thing I drink other then water. I drink many different types and enjoy trying new tea’s. I figured it would be fun to include on my blog. I will be sharing health benefits of various types of tea, doing tea reviews, and chatting about tasty tea.

I enjoy experimenting with tea leaves, in addition to the traditional tea bags. There are an abundance of ways to buy tea and many types of tea the average person has not heard about.

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I attempt to include white tea in my diet daily.  White tea is a very pure tea therefore can be on the expensive side. It is processed very little. However, it has some great health benefits such as helping arthritis, it helps with inflammation, it can help lower blood sugar and pressure, it strengths bones, it helps prevent infections, and helps support vision. Personally my favorite white tea is Orange Spice by Numi.

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Each type of tea offers amazing health benefits. It is a great way to relax on a chilly fall morning. Of course, you need to check to be sure various types of tea do not interact with your medication or your symptoms.

Share your favorite type of tea.

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High School

High school is a roller coaster ride; adding a chronic illness makes things even more complicated. Before school begins I would recommend setting up a meeting with your councilor and someone else in the admiration departments such as the principle.  Make sure you have a parent or another care giver with you who know your complete medical history. Be sure everyone has an understanding of your illness. Discuss with everyone present accommodations you might need, let them know you are still under doctors care, what to do in an emergency, and what to do if you are absent due to a flare.

There are a few documents you might need to get, which include: a 504 plan, a doctor’s note, and a note from admiration of your school or councilor. A 504 developed to ensure that a student who has a disability identified under the law and is attending an elementary or secondary educational institution receives accommodations that will ensure their academic success and access to the learning environment. Find out more at this website: http://specialchildren.about.com/od/504s/f/504faq1.htm The 504 plan will “follow” you to college.

Sadly not all high schools are willing to work with students who are chronically ill. There are other schooling options. I had attending a public school my entire life. My health violently spiraled downhill every year of high school. Junior year I had seizures due to a medication I was on. I had a fairly mild one in school one day and locked myself in the bathroom stall. As a result I was put on homebound. My mother and I met with the principle in preparation for my senior year. During this meeting we were told if I continued to stay on homebound I could not walk for graduation. Many of my teachers refused to give my tutor the work while I was on homebound. (I have done homebound through a public school three separate times). After a lot of research and discussion my parents and I agreed Cyber School would be the best option for me. My only regret is not going into Cyber School sooner. There are FREE public school, cyber school options. Type Cyber School in your state into Google and you will come up with a lengthy list.

The school I went through was amazing. Public Cyber Schools give you EVERYTHING you need. They send you a lap top, microphone, text books, printer, and any other supplies you might need. They also pay something towards your internet bill. In the beginning of the school year I went to class every day. Yes you read right I went to class. I would log into the schools website and go into an online class room. I was able to hear my teacher, read power points, see videos they showed, and interacted with students. I was able to speak to the entire class as well. There was a way for me to private message the teacher, raise my hand, and even let them know if I had to leave my room to go to the bathroom.

I always liked school, but I found it more enjoyable while I was in Cyber School. I cannot describe how priceless the flexibility was. I no longer had to worry about keeping up with the rest of the class. I was able to focus more on my health. I went through a period of time that I got sick if I got up too early. I was able to avoid this being in Cyber School. I could access my work anytime, 27/7.  I was able to go ahead, which was another priceless asset. About two months into school I was approved for ascyncerness learning. This meant I did not have to attend class. I had to maintain a certain GPA to stay in that program. Ascyncerness learning is not for everyone. My teachers e-mailed all class sessions to anyone in case we needed to review. I was able to view all the lesson plans, notes, power points, and due dates. Some teachers allowed me to take tests and quizzes anytime I wanted but on the other hand some teachers locked them until a certain date. My grades improved greatly.

I found in Cyber School I received more support. My teachers were very caring they checked up on me every few days, I had a counselor, and a family coach. They all helped me achieve my goals while I searched for my diagnosis.

One of people’s concerns is lack of socialization. There were more chances for me to interact with other people than I could keep track of. Academically we were required to do message boards. This included writing an essay or answering a question then answering another students post. There were group projects and interaction with other students during class. There were over twenty clubs. Some online but others were in person. There were chances to do sports as well. There were field trips and get together weekly. The school also had dances, prom, a regular graduation, year books, and more.

Prednisone Part One

I have shared on here off and on about my treatment plan. My treatment plan has drastically changed after leaving the hospital. This is partly due to my liver and partly my doctors just being a bit annoying. I have been pulled off of Methotrexate and Benlysta.  Right now my main medication is Prednisone. I have decided to do a small series of Prednisone blog posts, hopefully someone will find it helpful. Prednisone, it is almost always a love- hate relationship. It is unclear which is better being on it or not. There are an abundance of harsh side effects, yet it is a life savior. 46bde1cc6919eb9cff7a962b8c6f5026

Most Spoonies know of  Prednisone, for those who don’t, I will give you a brief overview. By definition Prednisone is, “an analogue of cortisone,used as an anti-inflammatory,immunosuppressive, and antineoplastic in the treatment of various diseases.” Put simply, Prednisone is a steroid. The body naturally makes low amounts of steroids it is also classified as hormones. This steroid is not the same type that well known people such as sports players or movie stars take. Prednisone should be a fast acting medication. It is used for countless illnesses arthritis, blood disorders, breathing problems, severe allergies, skin diseases, cancer, eye problems, immune system disorders and additional illnesses.   download

There is a side effect overload when looking at Prednisone. The side effects range from irritating to utterly devastating. Some ‘mild’ side effects include: Abnormal Fat Distribution, Absence of Menstrual Periods, Acne, Disorder involving Personality Changes, Excessive Hairiness, Excessive Sweating, Feel Like Throwing Up, Moon Face, Visible Water Retention, and Weight Gain. More serious side effects include: Seizures, Infection, Low Amount of Calcium in the Blood, Thin Fragile Skin, and Anemia. Most people experience at least one side effect while on Prednisone. Every encounter with Prednisone is different. It is a difficult medication to be on. Many times it alters someone’s personality and how they look. Coping with side effects is a challenge. It is meant to be used short term, but that is not always the case. prednisone2

Check back this month for more Prednisone posts. I will be sharing my personal experience and talking about how to cope 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 ❤