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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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!

General Medication Guide

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I can recall a time when swallowing pills were my worst nightmare. I was never able to remember to take my multi-vitamin. And I would avoid medication like the plague. Those days seem a lifetime away in my past along with carefree sunny afternoons of childhood. If you are newly diagnosed, there is a lot to learn, it can be intimidating.

If you are newly diagnosed, there is a lot to learn and a lot that sounds scary. The majority of people with a chronic illness will encounter a medication at some point in time, for many of us, it becomes a daily part of life. It becomes as natural as brushing your teeth.

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Constructing a treatment plan and sticking with it is essential making a big difference. The positives and side effects need to be considered before agreeing to any medication. Listening to the doctors expert advice is vital. In addition, I recommend doing your own homework and speaking with others who have taken the medication if possible. Keep in mind that everyone’s body reacts differently. Your body will not react the same way someone else’s has. If you have a caretaker or support system it is also wise to get their option. Personally, I always talk to my mom letting her know what I have learned about a medication, side effects, how long it will take to work, and my thoughts. It is okay to say no if you are not comfortable with taking a particular medication.

Vitamins and Supplements

Vitamins and supplements need to be discussed with your doctor and carefully thought out. I have multiple autoimmune disorders, therefore, my immune system is overactive. Vitamins and supplements boost your immune system, so I need to be cautious as I select only what my body truly needs. Which vitamins I take does vary on what my body needs and what other medication I am on. For example, with Prednisone potassium is one thing I know I need to have. With Depo, I need calcium and vitamin D. If I feel like I am not absorbing things properly I increase my vitamin C. Balance is key. The only other supplement I typically take is fish oil which can assist in brain fog and inflammation.

Over the Counter

Interactions need to be checked, whether it is with vitamins, prescription, or over the counter medications. Again over the counter medications must be discussed with your doctor to ensure it is the best thing for you. By simply talking to your doctor you can avoid terrible interactions and side effects.

Organization:

Organization is essential in many aspects with a chronic illness. If I didn’t have a system, I would not take my medication or vitamins ever. Especially considering most of us have brain fog. I keep all my medical supplies in a crate. This not only includes my medication but also tiger balm, braces, and chemo supply. I also have a daily pill organizer.

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Knowing when to take medication is important. Personally, I take the majority of mine after meals. Setting an alarm on your phone can be helpful. There are also free apps to help remind you to take medication on time. Having someone you are frequently with check in with you can also be useful.

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Whenever I go out I use old pill bottles to store the medication I will need or might need. I have a makeup bag that I put everything such as my inhaler, that I might need while I am out.

How do you stay organized with medication?

Encouragement for You

 

Blessings are all around you though at times they might be hard to see. The fact that you woke up this beautiful morning is a blessing. You are a fighter with a sparkling and breathtaking personality. If you are able to walk on your own that is truly a blessing, but if you cannot and you have a walking device that is a blessing as well. Your senses are a blessing as well as all the amazing things your body accomplishes without you taking notice. Those that you hold dear to your heart are blessings so is every moment that you spend with them.

Not only have you received a great abundance of blessings but you have blessed other without even knowing it. You have been a blessing by welcoming a new person to your group of friends or your church. You have been a blessing by reaching out to a friend who was lonely. You were a blessing simply by being present and listening while someone was having a difficult time. Your life story and the story of how you have battled you illness has inspired many. It has given people hope, strength, courage, and peace. Many more people will be inspired by your story and blessed by your compassion. You have impacted more people than you are aware of, you matter to countless people more than you know.
Reflect on all the priceless blessings in your life and encourage someone in your life.

Grieving

Six years old is my first memory of chronic pain. Over the years there were different events that unfolded reveling more symptoms and contributing to my pain. Though I was in pain I lived a normal life.

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The road to a diagnosis seemed to have no end. Most doctors dismissed my complaints. I had shared with my regular MD that I would bleed when I brushed my teeth, my hands and feet were turning colors, and that I was experiencing joint pain. The doctor ginned at me telling me I was just weird. I continued to have similar encounters with doctors. Many believed I was too young to be in pain, I just had anxiety, I was pregnant, or was trying to get out of school. The frustration did eventually give me anxiety. Getting a doctor to take me seriously was difficult.

My illness kicked things up a notch during my high school years; five surgeries, endless testing, and a desperately search for name for the monster destroying my body. My junior year of high school, I saw an awful doctor who put me on medication that I was too young for. Along with some simple side effects I began to have seizures.

I never expected my medical answers to impact my life greatly. I figured I would get an answer, maybe take a medication, monitor things, and move on with my life. Despite pain and fatigue I was an active adolescent. Many days I was up before the crack of dawn. Like most teenagers I attended high school. In addition I babysat at least five days a week, attended youth group, volunteered at a few day care centers, and volunteered through my church. I adored being busy. My summers were jam packed with adventure with my youth group hiking, swimming, cannoning, summer camp, sleep overs, and mission trips. Fall was just as busy for me with retreats and volunteering.

I didn’t realize how much I would need to adjust or how much my life would change after I got the medical answers I desperately searched for. Summer vacation was like a blank canvass anticipating a stunning work of art. I had committed to going with my church to Kentucky on a mission trip. As things unfolded and Lupus came into the light it became clear that I wouldn’t be able to go. Thick guilt and deep regret filled my heart.

My pastor attempted to ‘include’ me one Sunday before everyone departed for the trip. I was utterly embarrassed, wanting to hide under a rock. After, I slipped away to the bathroom. Locking myself in the familiar stall I sobbed uncontrollably. That is the moment the truth about chronic illness whacked me in the face. I am not going to get better. I am chronically ill. It was a difficult concept for me to wrap my mind around.

I went through months of grieving off and on. I grieved all the things I could no longer do. I grieved the time my illness robed. I grieved the events I missed out on, like prom. That period of grieving was necessary in order for me to move forward.

Grieving can be a difficult part of being diagnosed. However, it is healthy and most times necessary. It is okay to grieve all that your illness has stolen. Be patient with yourself. You need time to learn the ropes of living with a chronic illness. Grieving is only a season in your life, learn from it, it will be over soon.

How do you handle grief from your illness?

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/

Six Months

Today is my six month anniversary from being admitted to the hospital where I fought for my life. In addition, it has been six months since I have been in urgent care or the ER. This is the longest time I have stayed out of the ER or urgent care in seven or eight years. I never thought I would be able to say that I stayed out of urgent care for so long. Things have slowed down with my health. During my last major flare up typically I had a doctors appointment, medical testing, infusion, or an urgent care trip at least once a week. It was time consuming and draining.  I feel extremely blessed and grateful to be where I am now. I am also grateful for the medical professionals who cared for me, helped me, and continue to be on my case.

Hitting rock bottom with my health at the hospital was daunting. I can vividly recall, a chatter box doctor going over my medical history and medications several times. Then explaining I shouldn’t be in pain and implying that I should be in much worse condition (not that a 10 on the pain scale is in good condition). No one enjoys hitting rock bottom, but it was a blessing and a turning point. Though there are many negatives associated with steroids, they saved my life. Now they are helping me get stronger and hopeful begin to live again. (Yes, I am tapering.) I know I have said it before, but it is worth repeating, being admitted to the hospital was a blessing.

It is mind blowing for me to be able to say I have not stepped foot in urgent care in six months. I am beyond excited. Today, I am celebrating this victory. My mom and I are spending sometime together. She has been my caregiver and source of support and strength so I am blessed to be able to spend the day with her.