A Lupie Snow Day

I am sick of snow!!! This is not New England, Wisconsin, or any other state where you expect alot of snow. Alot of years we barely get 1 real snow fall. This year we're getting about 1 a week. What happened to global warming? Did it turn into global freezing? That's what it's starting to feel like. Even last summer was cooler than normal & half the summer it stayed in the 70s it seemed.... Nice Spring weather but hardly dive in a nice refreshing swimming pool weather. I am 100% a summer person. I LOVE the sun and heat (yes, a lupie who loves the sun & isn't photosensitive is unusual, but so am I). I do not remotely enjoy COLD weather or snow any day of the year other than Christmas...though one of my happiest Valentine's Day memories from when I was younger is of sledding in the snow w/ a guy I was crazy about at the time and a couple of our best friends....My body has an adverse reaction to the cold....first there is the Reynaud's which causes pain, numbness, and color change in my hands something fierce (they are quite patriotic actually- turning red, white, and blue)....then there is the increased pain and stiffness in my muscles and joints; both the lupus and fibro pain decides it's time to make themself known. It is not pleasant and probably doesn't make me a very pleasant person either to be honest. Pain makes most of us a bit grumpy anyway & this is definitely when my pain is at it's worst. The cold grey weather also seems to increase my fatigue quite dramatically...to the point that I have barely ventured from my bed today and did so yesterday only to make a coffee run and pick up a refill on one of my meds. Since there was no class today this wouldn't be such a big deal except that I have an essay due Wednesday morning I haven't even started on. Bad student! On the plus side I have no classes on campus on Tuesdays & can do everything I need to from bed including print the finished paper. It would be a good idea to start on it probably but I will probably do it all tomorrow. It has worked for other papers & this one doesn't even recquire any actual research since it is basically a 3 page summary of our self awareness excercizes in Interpersonal Communications. Sounds exciting, huh? Thankfully I do have a couple of advantages with this assignment. Being a bit older than your average student and having a chronic illness have made me much more aware of myself and my personal identity than most students who are considerably younger than me. I have had plenty of time to learn all about me.....and one thing I have learned is I hate freezing cold, grey, snowy snow days stuck at home!

So that is how this lupie spends her snow day....napping & procrastinating....how did you spend yours?

does brain fog mean I'll fail???

Haven't posted in a couple weeks because I have been pretty busy with school and my classes.
Before the seme,ester started I expected Spanish to be pretty easy for me since I had taken it for so many years from elementary-highschool. So far it has been coming back to me pretty well. It's an online class with mandatory voice discussions every week. I worry sometimes when I am preparing for these discussions that my brain is going to go blank and I will forget everything- vocab, pronounciation, conjugations, even how to introduce myself correctly. I worry because of something that is pretty familiar to most lupus and/or fibromyalgia patients- brain fog. It get really bad sometimes but so far it hasn't affected my Spanish too much. Odd. But good!
Where the brain fog has been affecting me is studying for chemistry. The math parts of chem I can work through pretty well, I can solve the problems at least. And I think I'll be OK with balancing equations because it is pretty much a step-by-step process with a set result or solution. It follows a logical progression which can be worked through. The problem is that we are supposed to know the names and formulas for about 30 "common" polyatomic ions. There lies the issue- memorization. For most things we work with there is some way to figure out or something you can look at for clues to your results. Not these. This is straight memorization and something I am not sure my lupie brain is dealing with very well. Yet, if the formula is in front of me I can identify the substance and solve whatever problem there is. I just can't name it....or I can look at a formula and name it BUT hardly ever can I look at the names & come up w/ a correct formula. I can do harder stuff but not this (relatively) simple memorization!
This doesn't make sense to me at all. thankfully in chemistry we almost always have at least our calculator and periodic table and can EVENTUALLY get to a formula. As a pre-pharm student I have to take biology, microbiology, & physics in addition to chem & organic chem. Biology seems a bit scarey because I have a feeling that will involve quite a bit of memorization. The truly scarey class I have on my cirriculum is coming up this summer or fall though. Anatomy & Physiology. I have already heard that this class is almost entirely memorization. I am scared to death of that idea. If I can't memorize 30 ions, how am I going to memorize the entire human body???

Or does having lupus and fibro mean I am destined to fail (as a pre-pharm/science major) and should find something easier to do??? And does it mean I am destined to feel dumb more often than I care to?

Things I have learned

One of my nurses (who actually has a PhD in nursing- how cool is that?) told me once that lupus should come w/ a doctorate. The longer I live w/ lupus, the more I tend to agree. I have learned about so many illnesses, their symptoms, treatments, and lasting effect on both the patient and their loved ones.

I know what labs are ordered for what reason now and can interpret alot of the lab results. I have learned more than I ever cared too about things like blood and urine....and even more about blood in urine and how to tell what that means. White blood cells can be different than red cells which is different from whole blood which is different from leukocytes....etc. Interesting in a way but something I would have been just as happy to never learn about. I can read my own lab results now much easier than anybody can explain them to me.

I have learned some things that are of little actual use to me too.....like how to re-set an IV pump when it messes up or gets an occlusion and starts beeping and how to remove an IV. Things that I still have to wait for my nurse to do when I get my IV every month because of some rule somewhere...may be do to study protocols??? I tend to blame anything I am not allowed to do for myself on study protocol because the rules about how much drug is given how often and by who is pretty set in stone and not at all flexible. (I've been on the med for 6 years and get IV infusions every 4 weeks. I feel like I should be able to push a button and fix a problem instead of having to interrupt something a nurse is doing to come push the button!)

I have learned ALOT about drugs and their interactions- with each other and with our bodies. I can tell you about "off label" uses for everything from anti-malarials and anti-rejection drugs to uses for OTC meds such as benadryl and mucinex. I have also learned alot about what meds you should never mix and that you have to be careful about what vitamins you take...especially if you are on medications.

To me the most interesting (and in my opinion, important) things I have learned though are more human nature related. I have realized that when you are diagnosed with a chronic illness you learn alot about who your friends are and who they aren't. I think this is especially true with an illness such as lupus which tends to present itself in young females (most often in somebody's 20s or 30s). I think it's human nature to deny our mortality and not want to face the possibility of a serious illness. When we get sick, it makes our friends think about themself in our place and alot of people- especially younger people- get scared. I don't think we lose friends so much because they don't care as because they aren't ready to face the fact that nobody stays young and healthy forever- including them. It's much easier to avoid somebody who is sick than to think about the possibility we could get sick too at some point. On the positive side though, I realize that the friends I have now are real friends and are not going to disappear just because I don't always feel like doing everything. They are their when I get scared or frustrated and can usually tell when I need to talk or vent as well as when I need to rest. They ask how I'm feeling and actually care about the answer. Almost all of them have their own issues they are dealing with and I think this helps them to understand how I feel and to be patient with me when I am having a bad day. Some of my wonderful friends I wouldn't even have the privilege of knowing if it weren't for my lupus.

I hate lupus and pray for a cure but I am also thankful for everything I have learned (and will learn in the future) as well as for the friends I have made and the wonderful people I have met because of my diagnosis.

Spoon Theory to explain what lupus feels like

I higly encourage EVERYONE to visit Christine's website But You Don't Look Sick. Wether or not you have a chronic medical condition you probably know or will know somebody else who does. There is a ton of great info & some grea gift ideas to. I think I'm gonna order the Lupus Sucks t-sirt I just saw on her site.　

The Spoon Theory
by Christine Miserandino www.butyoudontlooksick.com

My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.
As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know?
I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn't seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.
As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.
At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said "Here you go, you have Lupus". She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands.
I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.
Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a "loss" of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.
She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become?
I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of "spoons". But when you have to now plan your day, you need to know exactly how many "spoons" you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn't even started yet. I’ve wanted more "spoons" for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.
I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said " No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can't take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too." I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.
I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your "spoons" are gone, they are gone. Sometimes you can borrow against tomorrow’s "spoons", but just think how hard tomorrow will be with less "spoons". I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on "spoons", because you never know when you truly will need them. I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.
We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.
When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didn’t even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all.
I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn’t want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly "Christine, How do you do it? Do you really do this everyday?" I explained that some days were worse then others; some days I have more spoons then most. But I can never make it go away and I can’t forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, "I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared"
Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day's plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count "spoons".
After we were emotional and talked about this for a little while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can't go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug when we walked out of the diner. I had the one spoon in my hand and I said "Don’t worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don’t have room for wasted time, or wasted "spoons" and I chose to spend this time with you."
Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too. I think it isn’t just good for understanding Lupus, but anyone dealing with any disability or illness. Hopefully, they don’t take so much for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my "spoons".
© 2003 by Christine Miserandino Butyoudontlooksick.com
Please note that this story is copyrighted and should not be reprinted in any form without permission from the author. Feel free link to "The Spoon Theory" at www.butyoudontlooksick.com/the_spoon_theory - Thank you!

New Semester. New Challenges

So, the new semester starts today & will hopefully include a return to normalcy...or some approximation of normalcy at least. Settling back down in a set schedule and having a normal routine that includes and works around my class schedule and assignments will hopefully make it easier to tell people no more often on certain things. As a "lupie" you only have so much strength and energy for the things you have to do and want to do. Most lupies (aprox 80%) are female. Most are also of childbearing age when diagnosed (between 18 & 35 is average time most lupies are diagnosed as having lupus). This is also a very busy age range when we are starting work and/or attending college. It is when people begin to settle into new roles in their life as an adult and are often times preparing for marriage and a family of their own (maybe!). But due to lupus we often don't have as much energy as we had before. When you couple that with the chronic pain, oftentimes insomnia, brain fog most lupies experience to some degree at various times things are often harder to do.

I think, for me at least, it helps if I have some sort of routine to how I organize what I need to do and what I want to do. I have a calendar that has my classes filled in as well as doctor visits, birthdays, and any deadlines I need to complete something buy (i.e. when a scholly application is due). I also have built in "no time". No time is a variation on me time. It is time I have set aside that I am not doing any favors for anyone....it's also usually specific to my sister and her teenage sons who constantly want me to do something, go somewhere. Every so often I'll tell them something like "from now until Tuesday morning I am saying no to everything....favors, help, rides....anything they feel can't wait they are more than welcome to find somebody else to say yes but it won't be me.

By doing these things and having that "no time" when things get to be overly hectic at school or when I start to feel run down is a life saver for me, especially dealing with managing my lupus.

For anybody reading my blog who doesn't understand how tough it is to live w/ lupus & function normally I suggest checking out my next post which I am going to borrow from someone who can explain what it feels like to other people MUCH better than I can.

finals, Christmas, & lupus flare all at once!

First, I haven't been here in a bit due to semi-unforseen circumstances. The last couple weeks of the semester got a bit insane w/ the last minute tweaking of my final research project for English. See below and you'll get MOST of the research I did, minus some editing and revising. Thankfully that was the closest thing we had to an exam for that class as the others weren't particularly easy.lol. Had a ton of spreadsheets and databases to finish up besides studying for finals in my music aprec and office systems classes. The real bear though was that 3rd history exam. It wasn't a cummulative final but was really difficult to prepare for as over the last 3 & a half weeks of the semester we had crammed in about 500-600 years worth of European history including the Black Death, War of The Roses, 100 years War, Italian Renaissance, the French Civil War, & Christian Humanism. I am not Catholic, having grown up w/ a Baptist minister for a grandfather & Sunday school teacher grandmother but I could now tell you more than I ever cared to about the ups & downs of the Catholic Church, the Popes, Cardinals, and Bishops as well as the Babylonian Captivity of the Papacy and Concilliarism. I am sure all of this will come in useful to me as a science major. Not.

Of course at the same time I was wrapping up the semester there was also the getting ready for next semester- registration, trips to advising, making sure all of my transfer records finally got where they needed to, and taking to financial aid to make sure what I need to have ready to review my grants and loans. Plus (this part is very good!) my advisor emailed me a scholarship app she thinks I could get that would cover 75% of my tuition for NEXT semester! So now, I have that to do and get ready to turn back in as soon as she gets back in her office after Christmas.

Oh, and there was Christams to get ready for. Shopping to do, cleaning and getting stuff together to donate- clothes I don't wear, including some (alot!) I have never worn to go to Saint Vincents and a bunch of various new health and beauty supplies and some luxuries as well to send to the girls at Saint Jude's (women's half way house/rehab facility) and some for the Center For Women and Families. Wish I could do more but this year hasn't been easy, especially after getting laid off in march then going into my first major lupus flare in a very long time.

And that brings up the last part of why I have been away and haven't gotten the info I wanted to posted. I was sick with a minor stomach bug which made me pretty sick for about 2 days but in the process of fighting the virus along with alot of stress my immune system went into overdrive and so I have been fighting a flare and resisting the (probably smart) idea of putting myself back on the steroids for a week or 2. Yes, they help but they also are evil. The lupus picked my joints and gall bladder to attack this time so it's been really painful and close to impossible to eat anything more substantial than a banana or glass of SunnyD. On the plus side that could be a good way to not gain wait over the holidays, huh? My last infusion of Benlysta was given to me early b/c I had to skip the October infusion due to the flu and I wanted to make sure that if I had any issues/flare it wouldn't be til after finals. That theory worked but the result has been that just a few days after finals I started getting really sick. Just glad it wasn't durring finals!Also very glad that my infusion is at 12:30 this afternoon.

One last thing. Most people know I am on a study drug for lupus known as BenLysta or Lymphostat-B (bemulab) and I wanted to share an article I read. It was published before the Phase3 trial results were released but has some very interesting information in it. It also shows what LuAnne Novello said in her interview in an earlier post about sometimes Phase 2 trials can make it appear a drug is either more or less effective than in reality due to limited sample size. I just thought it was quite interesting and worth sharing. Let me know what ya think! http://bit.ly/5ZH8Tr

about me! - not that exciting a person really. lol

Still working on scanning & typing up an interviews & surveys I conducted on healthcare reaform as well as the response by the U.s. Senate Minority Leader, Mitch mcConell R-KY but wil probably be a few more days before it's ready to post since I am also wrapping up my end of the semester stuff & studying for a history exam on Renaissance Europe that is worth a third of our grade for the semester. In the meantime, here is a getting to know you kinda survey that's floating around blogger.

1. Where is your phone? right in fron of ,me- it's rarely more than a few feet away. lol
2. Your hair? Blonde & curly, been growing it out lately.
3. Your Mom? is obsessed w/ cake decorating & wedding shows lately. lol
4. Your Dad? has AWFUL taste in sports teams- he likes UK, The Yankees & The Patriots- YUCK!!!
5. Your favorite meal? Pasta
6. Your last dream? That I had to take more history classes- wait, that's more of a nightmare...last dream had to do w/ the Cards winning a basketball game
7. What do you like to drink? Iced coffee w/ skim milk & mocha
8. Your dream? to finish school & go into pharmaceutical research
9. In what room are you? my bedroom, listening to the Vikings game & studying
10. Your hobby? taking care of my nails
11. What are you afraid of? spiders, loneliness
12. Last travel? Seymour Indiana
13. Where were you last night? In bed by 11!
14. Something you are not? Tall, stupid
15. Muffins? cranberry orange
16. Wishlist? a cure for lupus, my own house
17. Where did you grow up? LOUISVILLE!!!
18. Last thing you did? sent a txt, polished my nails in Christmas colors (SH Hearts On Fire w/ China Glaze Emerald Sparkle ring fingers
19. What are you wearing? My flannel football PJ pants & Denver Broncos t-shirt
20. Your television? a 32"inch Samsung widescreen, great for watching football or movies
21. Your pet(s)? Dillon (my AmStaff), Biggie (a maltese puppy) Bernie (Bassett), & Stacey (Boxer mix)
22. Your friends? tend to think I am insane. (they may be right.lol)
23. Your life? Under construction :)
24. Your temper? is usually under control but not always
25. Do you miss someone? Yes.
26. Your car? needs to be worked on
27. Something you don't bring with you? depends where I am going- usually my dog, most places won't let me bring him
28. Your favorite shop? coffee shops or bookstores
29. Your favorite color? pink
30. Last time you laughed? really hard would have been last night @ my baby nephew- he's so cute & funny!!!
31. Last time you cried? a few days ago I think
32. Your best friend? am lucky enough to have 2
33. A place where you can go again and again? Disney World, the beach
34. Facebook? of course
35. Favorite place to eat? Cracker Barell or Rocky's