Everything But The Kitchen Sink

I am thrilled that finals week is finally behind me. Whoever invented finals is not my best friend. I love school, but finals week is too much stress. I will be graduating this week with my Associates, finally. Then a summer course, and I am completely done with community college. There are a few things in the air in reference to where I will be continuing my education at. Both my options are great. I am trusting in God to direct my steps and I am excited to see where He is leading me.

A few days before finals, I passed out for about ten minutes, while taking my cat to the Vet. (Poor Kitty was scared outta her mind). I didn’t have my typical warning signs. I am doubtful, it was just POTS, but then again who knows. Hours later I went to the Emergency Room.  My doctor isn’t clear about what an emergency is, therefore I have to be a pain and call to find out. The conclusion of the visit was I did not have a heart attack and no bleeding on the brain. I am going through a period of falling and dizzy spells once again, which is irritating. I have had intense muscle  pain in my legs which has made me wonder if it’s som how related. I have discovered a few things that help a tiny bit with the muscle pain: Village Natural Soap, Dr. Teals Pure Epsom Salt Body Oil, and tiger balm. The soap and oil are excellent for chemo skin. These are the first things that have helped my chemo skin.

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I am back on steroids for a short amount of time. The goal is to be off sometime in June. I switched from Methotrexate to 6 MP also known as Mercaptopurine. 6 MP is also a chemo and the dosage is higher. I noticted there isn’t as much paticent information as Methotrexate. I have been on it almost a month. I take it after dinner because in the beginning I was having migraines. The first two weeks was difficult. My assumption is because it’s a higher dose of Chemo. If this doesn’t give me the assistance I need we will be adding a biologic. Personally, I am comfortable with this option, more than ready to begin, and I think it is a good step. Many meds help both Lupus and IBD. Right now, it is another waiting period, which is always hard.

Currently, I am able to eat which is always exciting. I have a lot more options with food on steroids. In moderation, I can do fruit, juice, and small amounts of veggies. Being able to eat healthy is a treat.

We have had a lot of rain lately where I live. My hip and arthritis in general, have been less than happy about this. I am still not sure what is going to happen with my hip. Still having issues finding a doctor. Life is complicated with a chronic illness, as well all know.

Here are some pics of the Lupus hand sign from awareness day:

 

I will be posting more on the blog now that the semester is over. I have been working hard on a few posts and I am excited to share them with you! How have you been doing? Let me know in the comments.

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Oh! And by the way, I have made a new e-mail for the blog, being that I got locked out of my old e-mail after my concussion. hopefulspoonie@gmail.com

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College Chatter : Classes

This semester I am making a big shift with my college classes. The majority of my college career thus far has been done online. I enjoy online learning. I think it is a wonderful option, especially if you are chronically ill. The flexibility is priceless.

Though I love online learning this semester I will be taking two classes in the classroom and living on campus. Being in the classroom presents challenges; from needing to get ready for each class to hoping my body doesn’t misbehave in the classroom. The transition to the classroom takes a lot of spoons.

Sitting for a set period of time can be challenging for anyone with an illness. If you will be taking classes in the classroom, be prepared. Make sure to have water and any medication that you might need. In addition make sure to throw an emergency kit into your backpack.

Right now, I am a psychology major. My ultimate goal is to be somewhere in ministry. The courses I am taking are all four credits. This semester I will be taking Bio-psychology and Psych statistics in the classroom. I only have one class a day Monday through Thursday. One class mid morning and one in the evening. Hopefully my body will be okay with this schedule. In addition I will also be taking contemporary sociology online.

What courses will you be taking this fall?

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.