Sunday, May 9, 2010

Personality Type

OK, so my insomnia is crazy tonight and while surfing a couple of message boards people were discussing personality types and various personality tests. Somebody posted a link to a site where you can take the enneagram type so I figured I would take it just to see how accurate it was and to entertain myself. It was a short version so the results aren't as detailed as some other tests or versions may be but it was interesting and I thought I would share my results here and post the link for anybody else who might read this and want to see what it says about them. If you do take it, come back & post how accurate you found t to be and maybe even what your results are.

Take Free Enneagram Personality Test

Saturday, May 8, 2010

Amazing Experience #2- meeting other lupies

OK, I wrote about me and Jill spending the day helping out at the Emergency Shelter for Families which was at one end of the spectrum as far as the enviroment and situation people were in. Today I am going to tell you just a little about the amazing experience I had the following weekend which was completely at the other end of the spectrum as far as the people and enviroment but was equally as inspiring to me.

I had the oppurtunity to meet and spend the weekend with several of the most inspiring lupus fighters there could ever be. We spent the weekend in Washington DC at the Mandarin Oriental which is one of the most amazing hotels I have ever spent the night in. I think it may be the only hotel I have ever seen that was even nicer than my favorite place to stay- The Walt Disney World Swan and Dolphin.

The Mandarin Oriental is truly a five star hotel and was a perfect choice for a bunch of lupies to spend a couple nights. A common thing for us lupies seems to be sleep issues- either we can't sleep or all we feel like doing is sleep. I know I have had even more trouble sleeping in alot of hotels than I do at home because for years hotels didn't exactly have the most comftorable beds. Well, the Mandarin is an exception to that rule. I have talked about how much tme and money I have invested in making my bed as comfy as possible and I have to say the hotel bed was at least as comfortable as my bed at home. Another thing we deal with is pain and I have mentioned before that one of my favorite things to help is a hot bath. Well, the Mandarin had what may be my dream bathroom- a deep well tub that was so amazing I literally spent 45 minutes in it the second night. The water came up over my shoulders and the ends of the tub were angled so that you could stretch out and relax in the tub quite comfortably. There was also a seperate stand-alone glass shower w/ the rainfall shower head. I could have lived in there!

But, as wonderful as the hotel was, there was something even more amazing that weekend. The people. It was so inspiring listening to everybody's different story about their journey with lupus and how they deal with it. There were ladies of every shape and size, every age group, and every ethnicity and evryone had a unique and inspiring story to tell. We spent the weekend talking, eating (& we ate well), and really connecting over both our similarities and our differences. It was so great to be surrounded by people who understood and who didn't ever say "but you don't look sick" and who didn't get upset if you needed to relax or rest a bit instead of going out. It was especially nice to put faces to some of the names of people who I had talked with and who I "knew" but only from online. There were alot of ideas shared with each other about what works for each of us and alot of debate about what we need to do to help increase awareness and education about lupus and I think we all came away even more inspired to do what we can to help. It was one of the most inspiring things I have ever been part of and I really hope to keep that motivation and inspiration as I fight my fight against this disease and I also hope that the connections we made in DC carry forward so that together we can share our struggles and trumphs while knowing we have people who understand.

Sunday, May 2, 2010

Amazing Experience #1

Right now I am sitting here reflecting on things that have happened and everything I have done the past several weeks and I am exhausted. I am also peaceful, content, proud, and inspired. I have had opportunities this past week to have experiences that are the polar opposite of one another in most ways but that have combined to teach me more about myself, who I want to be, and what I can accomplish. This post is about the first of the two.

Our last project for the semester for one of my classes was a group service learning project which required us to work within a group assigned by our instructor, choose a place or cause, volunteer 4 hours of our time then write an essay and present something to the class about what we did and what the experience was like. She wanted to know how we interacted within our group and with the people involved or served by our cause. My group had a bit of difficulty narrowing down and selecting where we wanted to go. The process was made more difficult by the unavailability of a large number of the volunteer coordinators with various groups and agencies we tried to contact. Ideas we explored included the VA, Wayside Christian Mission, St Jude's (a halfway house for women in recovery), and Saint Vincent Depaul which runs halfway houses, thrift stores, job training, and outreach programs. We were finally able to reach Tandee Ogden who is the volunteer coordinator for Volunteers of America and arranged to go work at the Emergency Shelter for Families. This, I think, is where I would have chosen if I had taken more time to sit down and think about each organization that the group was open to even though I was not the one who championed the idea. Actually, nobody championed the idea- it was more of a default selection because everybody in the group seemed willing to help out there and they actually took our call and were glad to have our help after alot of voicemails had gone unreturned by other agencies.

We divided into two groups due to our widely differing schedules and also due to when the shelter actually needed people to help out. There were only 2 of us in my part of the group but I think that was for the best actually because, in my opinion, we were able to do more and be more valuable to the regular staff during the hours we spent working with them. Jill and I met at school on a rainy Sunday morning and set out to find where we were headed and get 2 hours done during their lunch time with the intent we would return at the same time Tuesday or Thursday to finish the last two hours and be done. Neither of us knew what to expect and, honestly, neither of us was completely sure we wanted to go or how we would handle the experience.

We got to the shelter without getting lost amazingly enough and rang the doorbell to be let inside even though we had no idea where we were supposed to go once in the hall. We made our way to the desk and they weren't expecting us- the coordinator had forgot to tell them we were coming. While we were talking to the receptionist Miss Gloria was standing at the end of the desk watching us like she wasn't sure what we were going to do or that we were capable of doing much at all, I think she had sensed that we weren't entirely confident about what or how much we could do just from nonverbal clues like body language while we were talking to the receptionist who was trying to figure out what to do with these two nervous girls in front of her. She turned to Miss Gloria and asked her if she could use our help. It turned out Miss Gloria was the one cooking for the house Sunday. She was the only one in the kitchen actually and had expected to have to do everything herself including cooking for all of the residents, serving their trays, and all of her cleaning and sanitizing in the large kitchen. When she said she could use our help and had stuff we could do we were all grateful. Me, Jill, and the receptionist that is. Miss Gloria tried not to show her apprehension but I thought it was hard not to notice it.

Miss Gloria smiled, showed us where we were going and what the house was going to have for lunch. We would be cooking for more people than I had ever imagined cooking for at once before. I believe she put the number of children alone near 40 and of course there were the adults as well that needed to be fed. We were going to make salad, fried chicken, peas, french fries, fruit, and desert for them. Kitchen work is hard work but Miss Gloria never stopped smiling and when she would get overloaded with tasks she never let her stress show. Instead she would say "God is good" or something similar then keep going. She looked out for all of the children and knew who could eat what, who had other things going on that a little extra attention and encouragement would help, and how to make every child from toddler to teen who came through smile and feel a bit better about themselves or their situation. She was amazing despite how tired she must have been. She tried her best never to let anybody see her with anything but a smile on her face and her attitude and dedication were inspiring to Jill and myself.

At 1, with lunch nearing completion, our two hours were up. It didn't matter. Jill and I both had the same idea and after talking to each other we approached Miss Gloria with the idea that if we weren't in her way too much maybe we could stay and help her with dinner as well. We weren't sure what she would think or say because we weren't sure if we were really a help or a hindurance. Miss Gloria was shocked and that was obvious from her face. She was also happy to have us stay as were some of the residents we had spoken with during the morning and early afternoon. They were amazed we wanted to stay and take care of them when we could have been doing other things with our afternoon and, after all, we had already spent the time required by our project. We were inspired by Miss Gloria's dedication and how much she cared for each and every child, mother, and father who came through her cafeteria. How could we leave her to do everything by herslelf? We stayed through clean-up, talked to the residents, and played with a pair of children trapped inside do the rain. Then we stayed through dinner preperation and served dinner to the families who live there. Now we could really see that we were doing some good- Miss Gloria was more relaxed, the receptionist asked if we had lost track of time or something (we hadn't), and the residents kept asking, "have ya'll been here all day?" I had so many people come and thank me that I felt embarsssed. The best thanks though was the kids who came back in for more of the homemade macaroni and cheese I had made or the 17 yr old who was there with his mom but had been upstairs asleep. I sent him a plate (piled a little higher than most because a 17 year old boy needs more food than most everybody else) and he came down to find me to thank me and asking how I knew he'd want extra ham and macaroni and cheese but not so many of the green veggies on his plate.

Having teen nephews I have seen exactly how much they can eat and, well, Miss Gloria had inspired me so much with the things she did to make the small children feel good I wanted to do the same for one who belongs to a group more often forgotten about. Actually, I wanted to do something for somebody who could have been one of my nephews and why should teens not be looked out for and cared about as much as younger kids? Everybody, but especially children and teens need to know somebody cares and that they matter.

After dinner it was time for Jill and I to leave and my lupie self could tell I had overdone things physically but the smiles we saw that day and how good it felt to actually step out of our comfort zones and normal social groups to do something for others was more than worth the fatigue and exhaustion I felt that night and the next day.

I'm lucky to have a comftorable place to live and people to support me through my struggles and who are there for me when I need a shoulder or a hug (even the virtual kind!). I hope that I never forget that lesson and that the next time I get angry or depressed over everything lupus has taken from me I will stop and take time to remember everything I have been given as well.

Friday, April 16, 2010

A little of this, a littel of that....Ramblings....

This is just a few random ramblings about things that are going on right now & a couple of things I am loving lately. Sorry if it seems a little scattered. Like I have said before this semester has been insane & hectic so I am a bit scattered & all over the place.

Two more weeks of classes before finals then I'll have a few weeks to relax, recharge, & re-organize before summer term starts in June. I was going to take a class durring May intersession but I am exhausted & think I need some time to rest & recuperate. I am taking classes over the summer though- Chem 2, lab & an algebraic theory/linear modeling class to kinda get back in the swing of math classes before I take calculus in the fall. Sometimes I really do wonder if I am in over my head and if I am going to survive the cirriculum I need for pharmacology.

I found out a few days ago that I was selected to be part of a Lupus Patient Advisory Board that is being held in D.C. at the end of the month! I am so excited and honored to have this oppurtunity to be an advocate and help give a voice to what it is like living with lupus and how it feels to deal with it on a daily basis. The meeting is in 2 weeks and is the weekend between the end of classes and finals week but I think it will be OK because the only difficult final I have should be in chem lecture which is scheduled for Wednesday of finals week. As long as I study between now and the trip and review very well over the 2 days between coming home and taking the exam I think I should come out OK. This is too much of an honor and too good an oppurtunity to pass up being part of. What do you think? Would you go if you were me?

Like I said, this probably seems like rambling, jumping from topic to topic but there has been alot going on and there are lots of things coming up......

I am loving the warmer weather lately! So much better for me and my reynaud's! Of course warmer weather also means adjustments to my routine and the things I use every day. Anybody who knows me knows I am picky about certain things. Like coffee (or tea) and being comftorable. Kinda random, huh?

Anyway durring the winter I tend to like hot drinks or heavier/spicier flavors in my coffee (or tea which I also love). With the warmer weather I have been enjoying lighter or more refreshing flavors. My favorites lately have been iced coffee with peppermint and mocha and iced green tea with lemonade. So yummy and refreshing! (And they help feed my caffeine addiction which is VERY important.)

One of the things that helps me feel more comftorable is taking care of my hands and feet. With sandal season here the pedis are especially important in my opinion (and I can't stand anybody wearing sandals w/ gross feet!). There are a few things that really help make this easy. First, my ped-egg is indespensible- especially durring flip-flop season. Use it on dry skin and it gets all of the rough spots smooth super fast I tend to follow that w/ soaking them in warm water and a body or foot scrub of some sort (lately I am loving One Minute Manicure). Then I love either Gold Bond or Boots Expert Moisture Boost Body Cream to help keep my feet moisturized and if they feel really dry (esp when I am holding fluids due to the lupus) I'll put A&D ointment over the lotion before bed and sleep in a pair of soft cotton socks. In the morning my feet feel great & are sandal ready. The other thing I recomend for everybody is a glass nail file. They smooth the edges, make it easy to keep your nails shaped neatly, they don't wear out like emory boards, and since you can wash them off & keep using them they are super eco-friendly. I always keep my toes polished but if somebody isn't into color on their toes this would help keep them looking neat and clean plus it just helps me feel better. I have heard more times than I can count "when your feet hurt, everything hurts" and taking care of them (esp the warm water scrub and lotion) really helps mine feel better. To be honest, keeping my feet pedicured also helps me feel better about myself because I know that at least part of me looks good & is taken care of even on the days when I have a rash on my face or chest from the lupus. What helps you feel better about yourself and what helps you not hurt as much?

I hope everyone is enjoying spring and the return of warm weather! Would love to know what those who live with or care about somebody with lupus would say or ask if they were given the chance to talk to researchers, healthcare providers, and drug companies. What would you say? Leave me comments and let me know what you think and how you deal with the challenges you face!

Wednesday, March 31, 2010

A brain dead lupie attempts chmistry

OK, so I have an idea of what I want to tell people about as far as the what I love posts I promised and have only done one installment of and some commentary on the whole health care reforms that have been passed and the complete idiocy of some of our representatives in Washington (starting with Senate Minority Leader, Mitch McConnell, of course!) but things have been so insane since Spring Break ended that I simple haven't actually put the things I want to say into coherent sentences yet. I am exhausted, insomniac, and having issues w/ weakness and brain fog....mostly due to stress and trying to overdo things, I think.
I am fairly used to the exhaustion where I feel literally drained of ever last drop of energy in my body and to the insomnia (hence the reason why when I manage to post it's usually 2 or 3am) but the mental blockage and brain fog I don't think I will ever get used to.
We have a take home quiz due tomorrow in chemistry. It's 5 questions. Shouldn't be TOO time consuming, right? Wrong. I have spent at least 8 hours on those 5 questions. Question 5 had 3 parts- write a balanced equation for the reaction, name the metal in the reaction, and tell how many mL of acid are needed to complete the reaction. The quiz gave us the products, the acid used, and how much of everything except the acid. I had no trouble writing an equation or figuring out how many mL of acid was needed....well, relatively little problem with that part....identifying what the metal was though took me about 2 hours...and there were only about 5 possible choices to start I said, brain fog. The brain fog creates mental blocks way to often that make it hard to do the easy stuff. How sad would it be if I turned in 5 pages of equations and solutions but couldn't come up with even a guess for the easiest thing we've done in weeks? (the metal was magnesium, in case you're wondering)
Never mind the 500 word essay I still need to come up's gonna be late BUT that will be OK since it's only worth like 50 points and I have somewhere around 280 extra credit points in that class right's for interpersonal communications and that is one thing I can definitely do. LOL
On the bright side of all of it though is that by continuing to try and work through all of my issues and illnesses I am making progress and even gaining a bit of notice. The nurse who is the research coordinator for my rheumatologist recommended me for a Lupus Patient Advisory Board that is being held in Washington D.C. next month. I won't know for sure if I am going to get to participate for a few days BUT it is nice to be recommended and considered.
If you were invited to participate in a project like this, what would you want to say about treatments, research, or your journey as a patient or in general? I'd LOVE to hear feedback from both lupies & non-lupies.

Wednesday, March 10, 2010

Things this lupie loves!

So I have been really, insanely, busy this semester & this winter plus we have had some really bad weather w/ alot more snow than usual. It has been super cold all winter on top of the snow so I have dedicated alot of time and energy to comfort. I have alot of problems w/ Reynaud's- it even hurts getting frozen food from the freezer at times it's so bad. So alot of this energy has been devoted to ways to combat the effects of the cold......perhaps even more of this energy has been put into things that help me feel more comftorable and things that make my skin feel better. I know alot of people who have been through the same experience with mixed success so I thought I would share the things I am loving and that have really helped me. I will spread this out over a few posts because there are so many things I love that help me feel better. The number one thing that interferes with both my health and school seems to be sleep, or lack there of so tonight I thought I would share a few things that help me sleep better.

I have chronic, severe insomnia & along w/ things to relax and certain medications- I LOVE YOU, Ambien!-I spent quite a bit of time and a bit of money on making my bed super comfy for me. Most important in making the bed extra comfy is my featherbed. I can't even explain how much of a lifesaver this is to me. It is fluffy & just soft enough to cushion me a to kind of mold to my sleep position as I move around. It is soft and cushy but also dense enough to relieve some of the pressure on my triggerpoints that would wake me up in pain so often. Especially my hips and shoulders. I have had mine awhile and will probably be getting a new one this summer or fall to make it easier on me when this one needs to go the I saw a new one that looked AMAZING- it is a layer of memory foam & a layer of feather down. The memory foam allows it to be a bight lighterweight so thinking that it would be great for summer into late fall then switch back to the one I have becase another great thing it does is help insulate and keep me warmer.

My next suggestion is actually more than one thing BUT they all go together in my opinion. GOOD pillows & several of them so that you can adjust them for different pain levels and different ways of sitting or laying in bed. I have 8 or 9 on my bed right now that I found at Marshall's pretty inexpensively- around $10 for feather/down eco pillows w/ quilted, unbleached cotton covers...firmer than a straight down but still very soft and fluffy and more than worth 10 dollars.

Lastly is EVERYBODY should have the best sheets and comforter they can. I have a mix of both bamboo & cotton sets that I mix and match together...they are all in the same color pallette so easy to mix together for a comftorable but luxurious bed.... my bamboo set is 350tc organic bamboo & so soft. I have cotton sets that range from 400-600 thread count and all are very soft and smooth. It helps having multiple sets b/c I can change them and throw the pair I just took off straight into the washer. My other love in this category is my comforter...I LOVE my down comforter that will prolly be in use another month or so then have it cleaned and pack it away while I use a super soft lighter weight comforter I found at TJMaxx (I am addicted to TJMaxx & Marshall' Many of us lupies get night sweats from time to time so to protect my comforters I have a couple of duvet covers which are like giant pillow cases but for your comforter. The duvet covers can be taken off & thrown in the washer just like a pillow case and are great b/c you can have a couple diff colors or textures which makes it easy to redecorate a bit in just a few minutes.

My last recomendation in this post is something else that helps w/ my sleep by relaxing me so perfectly. A hot bath is amazingly relaxing & if you give yourself a bathime treat such a conditioning mask for your hair or treat your whole body w/ a bath bomb, bath melt, or BUBBLES, and especially scrubs. My faves lately w/ the weather & meds taking a toll n my skin are from Lush, Bath & Body Works, and........................................Walmart. Yes, walmart. I know you might think I am crazy for listing Walmart there BUT their version of Gold Bond lotion is amazing and less expensive so you have more left for other goodies! At Bath & Body Works my fave is pretty much anything in True Blue Spa except the sunblock Haven't trie it so can't rec. I also LOVE their tarts because they come in such great scents and have more fragrance throw than alot of tarts I have tried. From Lush, I like all of their soaps I have tried so far and I can use them without them making me itch. My absolute fave in my world is the Butterball bath bomb which has lots of great oils and butters in it including a high percentage of shea and cocoa butters. Leaves skin so hydrated! Also has a nice relaxing scent to help you relax.

So these are just a few of my favorites and I will share some more in future posts. What are some of your favorites?

Wednesday, February 17, 2010

My Self Awareness assignment

I have mentioned before that one of the classes I am taking this semester is Interpersonal Communications. One of our assignments was a series of worksheets centered around our self awareness and self concept. We then were to write a 2-3 page essay summarizing what we learned/gained from the assignment. As a lupus patient and being a bit older than the average student I probably had a different experience with the project. Here is what I wrote.

The activity on self awareness and self concept reinforced what I know about myself. At 36 years old I have been to hell and back. In the process I have learned a lot about myself, how others see me, and who I want to be. I have had a lot of the time to realize what really matters to me and what doesn't.

I think that as a non-traditional student I approach an assignment like this from a different perspective than an 18 or 19 year old student would. That means, in my opinion, that my outcome is probably a bit different than most students would have. That, I feel, is the inevitable result of life experiences. As somebody who has had "everything"- house, new car, 10 year relationship, good job, and good health- and lost it all I have had to figure out who I am and what I truly value in my life.

I am a proud aunt, a dog loving pit bull defender, a great friend, a sports fanatic, and as one of my best friends put it, a collector of diseases. I am an intelligent, outspoken, curly girl. I am 100 percent me.

Are there things I would change if I could? Yes, of course. Everyone has something they would change if they could. For me, it would be my teeth and how shaky my hands often are. When I finish school I can fix one of those and the other may give me more patience in interpreting what others say or write- especially what doctors write on a prescription pad.

One thing I knew on some level but that this assignment reinforced for me is that my perceived self and my presenting self are, at times, different. I tend to present myself as confident and organized, more "together" than I really feel. I am often unsure of what or how much I know or that my ideas are good ones. I present myself as much more self assured most of the time, or at least I try to.

I do this for a couple of reasons I think. First I do it almost out of necessity. Having been in the workforce for many years in jobs that involved dealing with the public, and especially from being in management positions, I learned that it is important to appear confident and organized in order to succeed. The second reason I do this is that I have realized, for me at least, that if I act confident and "together" I start to feel that way. By changing my "self talk" I can change how I feel in a positive way and I start to become more confident and organized. I can talk myself into the fact that I am generally better prepared and informed than I give myself credit for being. This, to me, is the best use of self talk.

This assignment also reminded me of something else very important. It reminded me how I feel about living with lupus and how that affects my life and my interactions with others. I hate lupus. That is, I hate the disease. However, I am also grateful for it. I am thankful for everything I have learned and all of the people I have met because of my diagnosis. I am a better person because of the experience of living with a chronic illness. I have made wonderful friends who I never would have met were it not for my lupus. I have seen how sometimes those who seem to have the least give the most. I have learned to be more patient and kinder in how I interact with others and also with myself. If it weren't for my lupus I wouldn't have had the opportunity to be part of bringing the first treatment ever developed specifically for lupus, hopefully, to market by the end of 2010. I also may not have realized my desire to go back to school and complete my degree studying chemistry and pharmacology. Most people in my place probably would have answered the question about what I'd like to change or what I dislike about myself with something about not having lupus anymore. I have learned that it is a part of who I am and has had positive effects on who I am as a person almost as much as it had a negative effect on my physical health.

This assignment and each of the activities were interesting to me in how they reinforced my "self concept" and in how I rated different aspects of myself in their importance. I think it would have been interesting to do this same assignment at a younger age as well and see what you would learn about yourself from it. It is something that would be interesting also to revisit at different points in time to see what, if anything, changes over time. It is definitely something I will keep and look over again as I learn to see if I still feel the same later and something I would encourage others to use as a way to examine who they are and gain a better understanding of how they present themselves.

Tuesday, February 16, 2010

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 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 & did you spend yours?

Friday, January 29, 2010

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?

Friday, January 15, 2010

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 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.

Monday, January 11, 2010

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

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
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 - 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'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.