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!

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 with.....like 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 with....it'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 now....it'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.

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 cleaners....plus 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's...lol). 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?

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.

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.