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. ❤

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New Year’s

2015 is drifting into our history. Countless changes and surprises transpire in a year; things that we would never dream happened. We have become better versions of ourselves; a step close to who God created us to be.

I hope as you reflect you detect the beauty from the pain. Though reflecting is wonderful, it can also negatively impact us. Slipping into harping on the negative events is easy to unknowingly do. It is hard to be joyful with a chronic illness, if, like most of us, the majority of your goals were not accomplished, and you are not even a breath closer to the dream that sets your heart on fire.

Acknowledging the negativities and let downs is fundamental, but we need to also need to gracefully be thankful for the countless positivities.

If you follow Chronically Hopeful, you most likely know that the biggest event of my year was being admitted to the hospital last April due to elevated live enzymes and a severe Lupus flare. So, yes the most important thing I accomplished in 2015 is surviving. Every day is a struggle, still, but every day I’m grateful. It is hard to evaluate how I am doing in comparison to last  year. I am somewhat stronger, however, things are not where I need them to be. But I am determined to take steps forward towards less pain and a more normal life- whatever that might be.  You are not alone if you are battling similar health battles.

Making a New Years Resolution is more of a fad mixed with tradition. ‘Everyone’ is making them. No one is actually keeping them. By the time January is ready to make a graceful exit, resolutions have fallen away like a tear drop in the ocean.

I usually do not make New Years Resolutions. I can barely plan out this week without becoming utterly overwhelmed due to the fact that I don’t know how I will feel on any given day. I find that I personally do better setting a bunch of goals versus one big yearly goal. I have been compleating making a New Years Resolution. I have decided to set several goals including reading through as much of the Bible (cover to cover style),  to improve Chronically Hopeful specifically get 50 readers, and to improve things with my health.

So, what does the Spoonie New Years Resolution call for?

Flexibility: Make your resolution broad.

Realistic: Dreaming big is awesome, but keep your goals in your reach. Jump outside your comfort zone without putting your health at risk. You want to set yourself up for success.

Accountability: Share your resolution or goals with someone else. Allow them to hold you accountable. A little accountability goes a long ways.

Share some of your New Year’s reflections or resolutions in the comments.

 

Five C’s of Coping with Stress

Stress comes with chronic illness.  Get one chronic illness and receive more stress than you dream possible at no extra cost! Not the type of deal I was hoping to receive. We all know that stress is bad for us, especially for our illnesses though it is nearly impossible to avoid. Like pesky mosquito on a summer day.

There is stress at work. Stress at school. Stress at the doctors, the pharmacy, with the insurance company, and stress from the endless testing. There is stress at home when the kids constantly bicker. Stress from the medications. Stress from the endless bills. Stress from the pain. There is no way to just avoid stress. Therefore we need to cope with it and this is not always an easy task.

The five Cs of Coping with Chronic illness Stress: a short guide.

Cry

I have always been an emotional girl. Look at me the wrong way and I’ll start to ball my eyes out. Crying is a wonderful and healthy way to cope with stress. Releasing the tears can help the body work through stress and regulate various levels in the brain. A good deep cry can assist in coping with stress.

Cuddle

Who doesn’t love to cuddle?!? I mean seriously, what is more comforting then grabbing your furry friend and spending some quality cuddle time? Cuddles and hugs come with extra health benefits besides being awesome for stress like lowering blood pressure.

Coloring

Yes, color. Your favorite childhood pass time is not only acceptable in adulthood but it is recommended and healthy. “When coloring, we activate different areas of our two cerebral hemispheres, says psychologist Gloria Martínez Ayala. “The action involves both logic, by which we color forms, and creativity, when mixing and matching colors. This incorporates the areas of the cerebral cortex involved in vision and fine motor skills [coordination necessary to make small, precise movements]. The relaxation that it provides lowers the activity of the amygdala, a basic part of our brain involved in controlling emotion that is affected by stress (huffingtonpost).” The bottom line? Coloring is a creative way to combat stress.

Chatter

Call up a close friend and vent away. Letting it all out helps.

Change

A change in scenery can make a difference. If you are able go for a walk, go over to a friends house, or to your favorite coffee shop.  Go some where different and engage in a different activity.

Share how you cope with stress.

But You Don’t Look Sick

“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.

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.

         

“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.

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?

Chronic Illness & Summer

Summer became my favorite season as a teenager. The break from school was nice, but the adventure of summer was the most appealing aspect. Having the time to be outside more to hiking, swing, and go swimming. Just about every summer as a teen I went away with my church. From mission trips to camp to a pilgrimage in Taize.

Having Lupus has changed my relationship and view of summer. It is nice, but it is something that I would rather not deal with. I have severe sun sensitivity. Worst then the average Lupie. With in minutes of being in the sun, I begin to feel ill.  Sometimes even being in the car when the sun is out makes my symptoms worse. Currently I avoid the sun as much as possible, it is the only thing that works. Sun screen does not help me, though it makes a huge difference for many people with Lupus.

If you are sun sensitive be sure to take Vitamin D. Know your limits with Lupus. If you can be in the sun for an hour, just do an hour. Don’t push yourself more then your body can handle because that can and most likely will push you into a flare up.

This will be my first summer with POTS. Dehydration is a concern for anyone in the summer, but even more so if you have POTS. People with POTS become dehydrated easily. The past few weeks I have been battling dehydration. My best advice for other POTies is to drink lots of water and Gatorade. The electrolytes are needed. Though I am new to the POTS world, I would advise people with POTS to be careful in the heat. Too much heat can cause someone to become dizzy and pass out. Again it is essential to find balance with any illness and summer.

What challenges do you face in the summer with your chronic illness? How do you cope with the challenges?

Disability Center

Disability Center

I am preparing to live on campus in a few short months. Recently I did all the paper work for the disability center.

It is best to register with the disability center at the beginning of the semester, even if you are in remission. You never know how the semester will unfold; being sick is unpredictable. It is best if everyone is aware that you are chronically ill. If you had a 504 plan it will follow you to college. If you don’t that’s okay, most colleges will still work with you. 

Personally I meet with disability before any of my classes begin. We discus my health and what accommodations would be helpful for me. I sign some papers giving the disability center permission to speak to my professors on my behalf. In addition I e-mail all my professors. I know a lot of people hesitate telling administration about their illness. Personally I believe it is important to try to be open about being ill. I think being open allows others to be open and find encouragement as well. I share a lot of information with my college which you will see in the e-mail I sent to my professors this semester. I am open with my health for several reasons. When I do classes on campus I feel sharing everything about my health is for the best of my well-being. This way everyone knows what to do in the event of an emergency. I do have a history of passing out. If for some reason I could not speak or could not remember basic information my professor and disability would know and be able to share it with paramedics or emergency room staff. Whenever I am not home I wear a medical ID bracelet with basic information on it. In an emergency it is important for those around you to know what illnesses you have, what medication you are on, what medication you are allergic to, and who to contact. The paramedics will  not look in your wallet for a list of medication without your consent. On my ID bracelet I put, “On meds, check wallet.”

Sorry about that tangent, let’s get back on topic. I also share this information so my professors know that I will miss class sometimes due to flares, doctors, or treatments. I feel it is best to be up front about my health so that they can assistant me through out the semester as needed. Here is a sample e-mail: Dear Professor Name, I hope you are having a wonderful summer. My name is Victoria Guyadeen I will be in your online, Fundamentals of Nutrition course, BIOS 107, this coming semester. I am e-mailing you to inform you that I am Chronically Ill. Mrs.Smith from the disability center at the college will also be in contact with you before this semester begins. My main illness is Systemic Lupus Erythematosus. Lupus is an autoimmune disorder, in which the immune system becomes over active and confused. A person immune system should fight off bacteria and infections but when someone has Lupus it attacks the body. It can attack major organs, the skin, joints, and many other things. The symptoms vary from person to person, from day to day. A flare refers to when the disease is active causing increased pain and other symptoms such as fever. Lupus can range from mild to life threatening. I have several over lapping illnesses along with Systemic Lupus Erythematosus. These illnesses are: Asthma, Raynaud’s phenomenon, Endometriosis, Arthritis, Fibromyalgia, Osteoporosis, Anemia, IBD, Supernumerary Kidney, Kidney Stones, and Migraines. I also have brain fog due to Lupus. Brain fog has to do with memory. It can range from mild to severe. Mine is moderate. I get lost frequently, forget words and basic information, and sometimes I forget who people are. I am still learning how to work with academically. Due to brain fog I might ask for clarification for certain assignments. Like anyone who is chronically ill I have good days and terrible days. However I never know when I will begin to flare or end up in the emergency room. I still see my doctors frequently and go through intense and time consuming medical testing. Currently I am under the care of four doctors. My doctors are about two hours from where I live. I have begun a new treatment for my Lupus, it is called Benlysta. Benlysta is an IV infusion; I receive it once a month on a Friday. Between the car ride and infusion it takes anywhere from six to eight hours. Of course I will do any assignments a head of time when my treatment is coming up. This is my third year of doing online learning. I enjoy online learning. The flexibility is priceless for me. I am able to work super hard on my good days which allow me to rest more on bad days. I normally work ahead to some degree in case I begin to flare or have doctor appointments. I also work ahead to keep my stress a level down which is vital. Despite my illnesses I set high academic goals for myself. One academic goal I have set for myself for this coming semester is to achieve at least a 3.8 GPA. I am extremely excited to be taking this class and I look forward to working with you. I will attach the letter my primary care doctor wrote for disability. Over the next few weeks disability will e-mail you a full list of my accommodations. Please give me 48 hours’ notice if you decided to change the instructions on an assignment. If you are willing to give me a copy of the syllabus for the fall that would be greatly appreciated, this way I can coordinate with my doctor’s appointments. Thank you so much for taking the time to read this. I apologize for it being such a long e-mail. If you have any other questions or need more information about anything please do not hesitate to e-mail me. I try to be extremely open about my health. I feel the honesty will help me succeed in college. Thank you once again. I hope you enjoy the rest of your summer.

Sincerely, Victoria Guyadeen

(*Note this is an old letter from a few semesters ago).

How much you share about your health is completely up to you. Learning how much to share and how to balance college life and an illness takes time. Be patient with yourself. Enjoy your time in college.

Please: Let me know what else would be helpful for you. I could show samples of doctor notes to the professors and accommodation list. Or what other tools would be useful for your college journey.

Prednisone Part Three

The many side effects of prednisone complicates our already mixed up lives. Coping with them can present challenges. I am here to share a few simple tips of coping with prednisone side effects.

Humor is helps me cope with being chronically ill. Someone once said, “If you’re not laughing, you’re crying.” And as we all know laughter is the best medication. I have always had a unique sense of humor. You either understand my jokes and find me funny or you just think I’m weird- well either way you might think I’m weird. Prednisone is easy to make fun of, which is why countless do so in the online spoonie world. From pictures to songs prednisone humor is plentiful. I feel humor helps us find a sense of normalcy in the chaos of illness.

I love to talk. Some times I just talk even if there is nothing to talk about, endlessly blabbering. Talking is a great way to cope with the emotional monster chained up inside of you from prednisone. Family and friends provide support that cannot be put into words, so priceless and beautiful. In addition to their vital and irreplaceable support, I recommend finding a prednisone support group. I am a huge fan, overall of online support groups. Connecting with other spoonies gives you a different perspective, inspiration, and support in a unique way.

Are you on prednisone? Have you meet the emotional terror monsters evil twin… Cravings? If not you can receive your prednisone cravings and out of control hunger for free.

Hunger and cravings are another monster of prednisone. I don’t know about other people, but most times I do not get truly hungry, I just feel like eating or have cravings. Either way it is another obstacle for many. I face the obstacle of not having many things I can eat therefore I give into my cravings about 90% of the time. I do not recommend this what so ever, I know it’s not the best habit to be in. You already know that you need to eat healthy. It is more important now being on prednisone. The way your body is processing and absorbing food is different then your normal. For example you need to make sure to get enough calcium, potassium, and vitamin D. Lower the amount of sodium you eat. Find foods that are healthy and filling. Of course plenty of water is a must.

How do you cope with Prednisone?