Welcome December

I adore the Christmas season, it is absolutely magical. Beauty overflows all around from stunning lights to warm smiles to traditions and so much more. Christmas carols sweetly fill the air. The Christmas season brings joy as it reassures us gently that things will be okay. It helps us connect with our inner child reminding us of the wonderful Christmas memories. At the same time, it encourages us to move forward filling us with a hope like no other. It unites us with those we hold dear in our hearts. I cherish every aspect of Christmas.

Unfortunately chronic illness and the stressful demands that go with it does not take a holiday. The doctors appointments, treatment, and testing still must be done. Chronic illness tends to complicate things and get in the way of our joy during this season. It is easy to lose focus of the beauty in this season when we are consumed with emotion and pain. When the world seems to be caving in on us and everything seems to be falling apart. Chronic illness isolates us. We feel the effects more so this time of year. Finding a balance between doing things and resting becomes more difficult. For some, this season is depressing, reminding them of all they cannot do.

I hope you are able to take the time to rest and reflect this holiday season. Take to reflect about all the ways you have grown as an individual, all you have accomplished, all the blessings in your life, and everything you have overcome the past few months. You, my friend, have come so far. I am proud of you. You deserve to take time for yourself this busy season. You are an inspiration. Your story is breathtaking and laced with beauty along with encouragement it will change lives. I pray your strength is renewed. The Lord will bless you greatly this season, be open to all he has to offer for you.

I pray you would have a flare free Christmas season. I hope that despite your pain you are able to enjoy this season of blessing. Cherish every moment with those you hold dear to your heart. Hold onto the Christmas spirit. I pray that this season would bless you with little to no pain, plenty of spoons, memories, joy, and love. “It’s beginning to look a lot like Christmas.”

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Living Loved

Living loved is an adorable phrase. It would look perfect on my wall or on a t-shirt. The concept is lovely, but actually living loved that is a different story. I had to ask myself, am I living loved? Honestly, it depends on the day. Many days, like tonight I do not feel loved and I do not feel like I am living loved. Living loved shouldn’t be dependent on our circumstances or the people we encounter it should come from the stability of the love Jesus pours out to us. This is a new concept for me. Maybe living loved is a new concept for you as well. We can work through what this practically looks like together.

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To live loved I need to be filled with God’s love.“I needed to reconnect with the One who knows how to breathe life and love back into the dead places. Jesus doesn’t participate in the rat race. He’s into the slower rhythms of life like abiding, and , delighting, and dwelling…” I need to have my quiet time, daily. Ideally, this would be three hours minimum. Realistically it is usually an hour and a half to two hours. No, it’s not impressive I am desperate for my time with God. Just like the amount of time everyone’s body needs is unique to them so is the amount of quiet time one needs.

Living loved is pouring out love. Some days this comes naturally. However, I become discouraged when I feel as though I am endlessly pouring into certain people with no response. Finding balance when pouring into people is essential. Blessing others  ultimately blesses us. Walking into a situation as Lysa says looking to bless others.

Precious friends, ” and live in love as the Anointed One loved you—so much that He gave Himself as a fragrant sacrifice, pleasing God.” Ephesians 5:2The Voice

Lord,

Enable us to lived loved completely confident in You. Thank you for the depth of Your love. Allow us to pour blessings into others lives. To invite others in and help them to feel loved. Fill us with Your goodness. We love you.

Amen

Online Bible Study

Being mainly homebound is difficult. We long to be as normal as possible, yet our bodies seem to fail  repeatedly. Technology paves the path to socialization. Of course, being in person is ideal, but not always reality.

We weren’t made for isolation, yet slip into its trap all to often. Community is an essential aspect of life.

Online Bible study, is a fairly new concept. It provides a wonderful chance to get into the word of God, grow Spiritually, and to have some degree of fellowship. A Bible study or small group can also provide accountability. This is by no means only for those with a chronic illness. Just like at most churches, you get a mix of people coming from all walks of life.

About a week ago, I began my second online Bible study through Proverbs 31 Ministries. Proverbs 31 Ministeries is an excellent resource for women of all ages. ” Wherever a woman may be on her spiritual journey, Proverbs 31 Ministries exists to be a trusted friend who understands the challenges she faces, walks by her side, encouraging her as she walks toward the heart of God.”

I began participating in a Proverbs 31 Ministries Bible study about a week ago. We are reading, I know His name by Wendy Blight. In addition, to reading a section of the book daily (Monday – Friday) we have a private Facebook page where we are able to share with one another. For this particular study, there are a lot of women. For me, at this time, it is not realistic to read every comment (though I did try). I aim to read five to ten post and comment on a handful.

Another online women Bible study is Good Morning Girls, by Women Living Well. I highly encourage you to consider joining some type of Bible study or small group either in person or online. If you think you would benefit from an online setting make sure to do your homework, find out what the group believes. And, of course, pray over it before jumping in.

 

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/

Methotrexate Update

Beginning classes has been more demanding on my body than I had anticipated. College has sucked the spoons right out of my grip. New classes, new symptoms, and new challenges. The delicate balancing act is always being reshaped. Determining where the line is between pushing a little further and pushing to hard is complex, because the silly line keeps moving.

I am fairly certain this is the most stable my health has been sense I began college. By no means does that mean I am able to run a marathon or doing anything crazy. Realistically, daily activities are still a struggle. I saw my doctor the week I began school. The goal is to come down to 25 mg of Prednisone. Additionally, she increased the Methotrexate by 4 or 5 mg. For this particular medication that is a jump. This jump has it’s perks. I was moved to the self injection. Yes. You read correctly, I did say that the self injection medication is a positive thing. No I haven’t lost my mind and I do not like needles. My body goes through periods of times when it doesn’t absorb most of what is put into it. It has been questioned several times how much of my medication I am actually absorbing. Overall absorption is not a key issue currently.

The last time I had seen my doctor she wanted me to take some of the Methotrexate in the morning. It was to rough on my body to break in up over twelve or more hours. I could tell she was hesitant switching me to the injection. With my medical history I don’t blame her. At the same time, I know my body and the majority of the time what is best. I have complete confidence that the switch to the injection is what is right for me currently.

I did not receive a decent lesson on how to do the injection. I am not positive the person who showed me knew how to do it. She showed me how to fill the syringe. When we picked up my meds and supplies from the Pharmacy the well meaning pharmacist increased my anxiety. He told me the needle should go in at a specific angle. My first though was oh no, I am gonna mess this up, I am terrible at math! Needles? No big deal. Math? I’d like to run away.

I was nervous like any other person doing my first injection. I finally got up the nerve to get it over with and did the injection. I knew something was wrong. At first I thought it was an allergy to the needle. I got a bit puffy and yellow at the injection sight. Once the needle was out I got extremely dizzy. I laid down for five minutes and the dizzy spell passed. After worrying my head off I realized that I didn’t put the needle in deep enough which is why the sight was puffy and yellow (The medication is yellow. Someone said it looks like pee… which isn’t a lie lol). The following day I felt sick and extremely tired.

I did my second injection last Friday. It went much better. The meds sting towards the end of the injection. I do premedicate my self. The side effects were very minimal.

I have had a lot of medication changes with steroids and chemo. It is demanding on my body and emotions. Being ill is equivalent most times to having a full time job.

College Chatter

The sun kisses our saltwater hair fair well. Our schedules burst with activity as routines replace the relaxed rhythm. It seems as though we awake one morning to a transformed master piece outside the window. Than it dawns on us, as the crisp morning air embraces us, that fall is among us.

Fall is a new beginning for many as school begins we are inspired to reevaluate goals. I am finally beginning my courses this week. To me beginning school in September is late. I am taking twelve credits, all online: Math, Spanish, Computes, and English. I get a lot of questions about how I do online courses. It is a lot of planning, re-planning, being flexible, and motivated. Let’s jump back to the goals track, for a brief moment. I have found it helpful to have either a monthly or semester list of goals. It helps minimize anxiety and helps with organization.

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I have been working on improving my planning system. I got a durable binder from stables, which I use to store planning templates, in addition to my general planner.

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Currently I have been using the passion planner template to map out my day.

https://chronicallyhopeful2014.files.wordpress.com/2015/09/277e8-passionplannerclassicsunday.pdf

http://www.passionplanner.com/#home-2-section

Planning with a chronic illness can seem nearly impossible. I try to get ahead with school work yet under plan my days. Personally, I am an overachiever. I like to get ahead as much as possible. I know most people procrastinate, so this method would not be ideal. I attempt to accomplish as much as possible without causing a flare up. We all know we need to pace ourselves, but that is easy said than done!

Color coding, stickers, and quotes make anything super cute and fun. I use decorating the pages as a way to rest and de-stress.

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Brain fog plays into all this organization and planning stuff. For this reason I use a white board in addition to keep myself on track.

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Accommodate you body in your planning. For me I function best mid morning. Doing anything before 7 AM is just not happening. I can’t sit for too long due to my back and my POTS. Therefore frequent breaks are a must. I try to take into consideration that any day can have the bumps of extreme pain, fatigue, dehydration, bathroom marathons, or spoonie vacations (aka an ER or Urgent Care trip). My good days are the beginning of the week due to my chemo. Also take into consideration doctor appointments, IV treatments, PT, or any other spooine activities.

How do you plan out your day?

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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. 
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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.”
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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).
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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.