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.