tag:blogger.com,1999:blog-43643079652833491552024-02-08T12:15:43.232-05:00WolfBitTink, aka the Lupie Louisville fanaticmy ramblings, opinions, and research on whatever comes to mind. I am Michelle, a lupus patient, dog lover, & huge sports fanatic.Michellehttp://www.blogger.com/profile/12101325070371072328noreply@blogger.comBlogger22125tag:blogger.com,1999:blog-4364307965283349155.post-35185185478270874472010-05-09T04:32:00.002-04:002010-05-09T04:55:15.096-04:00Personality TypeOK, 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.
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<br /><a href="http://www.blogger.com/" 20cellspacing="%222%22%20width=" 20border="%220%22%20cellpadding=" 20align=" 22bgcolor="><div align="center">Main Type</div></td><td><div align="center">Overall Self</div></td></tr><tr><td width="50%"><div align="center"><img border="0" src="http://images.similarminds.com/2.gif" /></div></td><td><div align="center"><img border="0" src="http://images.similarminds.com/omni.gif" /></div></td></tr></table><a href="http://www.similarminds.com/">Take Free Enneagram Personality Test</a>
<br />'>http:// <div align="center"><table border="0" cellspacing="2" cellpadding="0" width="240" bgcolor="#e7e4e4"><tbody><tr><td width="50%"><div align="center">Main Type</div></td><td><div align="center">Overall Self</div></td></tr><tr><td width="50%"><div align="center"><img border="0" src="http://images.similarminds.com/2.gif" /></div></td><td><div align="center"><img border="0" src="http://images.similarminds.com/omni.gif" /></div></td></tr></tbody></table><a href="http://www.similarminds.com/">Take Free Enneagram Personality Test</a>
<br />Michellehttp://www.blogger.com/profile/12101325070371072328noreply@blogger.comtag:blogger.com,1999:blog-4364307965283349155.post-56351207119000492582010-05-08T13:43:00.002-04:002010-05-08T14:11:08.830-04:00Amazing Experience #2- meeting other lupiesOK, 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.<br /><br />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.<br /><br />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!<br /><br />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.Michellehttp://www.blogger.com/profile/12101325070371072328noreply@blogger.comtag:blogger.com,1999:blog-4364307965283349155.post-44677520433596755892010-05-02T22:41:00.005-04:002010-05-03T00:14:16.363-04:00Amazing Experience #1Right 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 <span id="SPELLING_ERROR_0" class="blsp-spelling-corrected">opportunities</span> 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.<br /><br />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 <span id="SPELLING_ERROR_1" class="blsp-spelling-corrected">instructor</span>, 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 <span id="SPELLING_ERROR_2" class="blsp-spelling-corrected">interacted</span> 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 <span id="SPELLING_ERROR_3" class="blsp-spelling-corrected">unavailability</span> of a large number of the volunteer <span id="SPELLING_ERROR_4" class="blsp-spelling-corrected">coordinators</span> 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 <span id="SPELLING_ERROR_5" class="blsp-spelling-error">Depaul</span> which runs halfway houses, thrift stores, job training, and outreach programs. We were finally able to reach <span id="SPELLING_ERROR_6" class="blsp-spelling-error">Tandee</span> Ogden who is the volunteer <span id="SPELLING_ERROR_7" class="blsp-spelling-corrected">coordinator</span> 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. <span id="SPELLING_ERROR_8" class="blsp-spelling-corrected">Actually</span>, 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 <span id="SPELLING_ERROR_9" class="blsp-spelling-error">alot</span> of <span id="SPELLING_ERROR_10" class="blsp-spelling-error">voicemails</span> had gone <span id="SPELLING_ERROR_11" class="blsp-spelling-error">unreturned</span> by other agencies.<br /><br />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 <span id="SPELLING_ERROR_12" class="blsp-spelling-corrected">during</span> 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 <span id="SPELLING_ERROR_13" class="blsp-spelling-corrected">during</span> 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.<br /><br />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 <span id="SPELLING_ERROR_14" class="blsp-spelling-corrected">coordinator</span> 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 <span id="SPELLING_ERROR_15" class="blsp-spelling-corrected">apprehension</span> but I thought it was hard not to notice it.<br /><br />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 <span id="SPELLING_ERROR_16" class="blsp-spelling-corrected">overloaded</span> 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.<br /><br />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.<br /><br />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.<br /><br />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.<br /><br />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.Michellehttp://www.blogger.com/profile/12101325070371072328noreply@blogger.comtag:blogger.com,1999:blog-4364307965283349155.post-59454142206483719572010-04-16T01:23:00.003-04:002010-04-16T02:55:51.086-04:00A 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.<br /><br />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.<br /><br />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?<br /><br />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......<br /><br />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?<br /><br />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.)<br /><br />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?<br /><br />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!Michellehttp://www.blogger.com/profile/12101325070371072328noreply@blogger.comtag:blogger.com,1999:blog-4364307965283349155.post-68240470579158017312010-03-31T02:09:00.003-04:002010-03-31T02:44:11.499-04:00A brain dead lupie attempts chmistryOK, 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 <span id="SPELLING_ERROR_0" class="blsp-spelling-corrected">health care</span> 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 <span id="SPELLING_ERROR_1" class="blsp-spelling-corrected">simple</span> haven't <span id="SPELLING_ERROR_2" class="blsp-spelling-corrected">actually</span> 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.<br />I am <span id="SPELLING_ERROR_3" class="blsp-spelling-corrected">fairly</span> 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.<br />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 <span id="SPELLING_ERROR_4" class="blsp-spelling-error">mL</span> 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 <span id="SPELLING_ERROR_5" class="blsp-spelling-error">mL</span> 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)<br />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. <span id="SPELLING_ERROR_6" class="blsp-spelling-error">LOL</span><br />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 <span id="SPELLING_ERROR_7" class="blsp-spelling-error">rheumatologist</span> <span id="SPELLING_ERROR_8" class="blsp-spelling-corrected">recommended</span> 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 <span id="SPELLING_ERROR_9" class="blsp-spelling-corrected">recommended</span> and considered.<br />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 <span id="SPELLING_ERROR_10" class="blsp-spelling-error">lupies</span> & non-<span id="SPELLING_ERROR_11" class="blsp-spelling-error">lupies</span>.Michellehttp://www.blogger.com/profile/12101325070371072328noreply@blogger.comtag:blogger.com,1999:blog-4364307965283349155.post-71670697815045436462010-03-10T01:33:00.004-05:002010-03-10T10:43:37.834-05:00Things 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.<br /><br />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.<br /><br />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.<br /><br />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.<br /><br />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.<br /><br />So these are just a few of my favorites and I will share some more in future posts. What are some of your favorites?Michellehttp://www.blogger.com/profile/12101325070371072328noreply@blogger.comtag:blogger.com,1999:blog-4364307965283349155.post-72104620056255693982010-02-17T02:21:00.001-05:002010-02-17T02:21:40.035-05:00My Self Awareness assignment<span xmlns=''><p> 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. <span style='font-family:Times New Roman; font-size:12pt'><br /> </span></p><p><span style='font-family:Times New Roman; font-size:12pt'> 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.<br /></span></p><p><span style='font-family:Times New Roman; font-size:12pt'> 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.<br /></span></p><p><span style='font-family:Times New Roman; font-size:12pt'>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.<br /></span></p><p><span style='font-family:Times New Roman; font-size:12pt'>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.<br /></span></p><p><span style='font-family:Times New Roman; font-size:12pt'>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.<br /></span></p><p><span style='font-family:Times New Roman; font-size:12pt'>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.<br /></span></p><p><span style='font-family:Times New Roman; font-size:12pt'>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.<br /></span></p><p><span style='font-family:Times New Roman; font-size:12pt'>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.</span></p></span>Michellehttp://www.blogger.com/profile/12101325070371072328noreply@blogger.comtag:blogger.com,1999:blog-4364307965283349155.post-20356983977967490242010-02-16T02:08:00.003-05:002010-02-16T02:31:42.170-05:00A Lupie Snow Day<span style="color:#330033;"> 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!</span><br /><br /><span style="color:#330033;">So that is how this lupie spends her snow day....napping & procrastinating....how did you spend yours?</span>Michellehttp://www.blogger.com/profile/12101325070371072328noreply@blogger.comtag:blogger.com,1999:blog-4364307965283349155.post-45703555096356400232010-01-29T16:13:00.004-05:002010-01-29T16:39:22.417-05:00does brain fog mean I'll fail???Haven't posted in a couple weeks because I have been pretty busy with school and my classes.<br />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!<br />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!<br />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???<br /><br />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?Michellehttp://www.blogger.com/profile/12101325070371072328noreply@blogger.comtag:blogger.com,1999:blog-4364307965283349155.post-62049210157825741492010-01-15T02:13:00.004-05:002010-01-15T02:57:59.915-05:00Things I have learnedOne 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.<br /><br />I know what labs are ordered for what reason now and can interpret <span id="SPELLING_ERROR_0" class="blsp-spelling-error">alot</span> 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.<br /><br />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!)<br /><br />I have learned <span id="SPELLING_ERROR_1" class="blsp-spelling-error">ALOT</span> about drugs and their interactions- with each other and with our bodies. I can tell you about "off label" uses for everything from anti-<span id="SPELLING_ERROR_2" class="blsp-spelling-error">malarials</span> and anti-rejection drugs to uses for OTC <span id="SPELLING_ERROR_3" class="blsp-spelling-error">meds</span> such as <span id="SPELLING_ERROR_4" class="blsp-spelling-error">benadryl</span> and <span id="SPELLING_ERROR_5" class="blsp-spelling-error">mucinex</span>. I have also learned <span id="SPELLING_ERROR_6" class="blsp-spelling-error">alot</span> about what <span id="SPELLING_ERROR_7" class="blsp-spelling-error">meds</span> you should never mix and that you have to be careful about what vitamins you take...especially if you are on medications.<br /><br />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 <span id="SPELLING_ERROR_9" class="blsp-spelling-error">alot</span> 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 <span id="SPELLING_ERROR_10" class="blsp-spelling-error">somebody's</span> 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 <span id="SPELLING_ERROR_11" class="blsp-spelling-error">themself</span> in our place and <span id="SPELLING_ERROR_12" class="blsp-spelling-error">alot</span> 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.<br /><br />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.Michellehttp://www.blogger.com/profile/12101325070371072328noreply@blogger.comtag:blogger.com,1999:blog-4364307965283349155.post-66663612100202412332010-01-11T01:57:00.003-05:002010-01-11T02:04:50.886-05:00Spoon Theory to explain what lupus feels likeI 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. <br /><br />The Spoon Theory<br />by Christine Miserandino <a href="http://www.butyoudontlooksick.com/">www.butyoudontlooksick.com</a><br /><br />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.<br />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?<br />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.<br />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.<br />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.<br />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.<br />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.<br />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?<br />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.<br />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.<br />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.<br />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.<br />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.<br />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"<br />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".<br />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."<br />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".<br />© 2003 by Christine Miserandino Butyoudontlooksick.com<br />Please note that this story is copyrighted and should not be reprinted in any form without permission from the author. Feel free link to "The Spoon Theory" at www.butyoudontlooksick.com/the_spoon_theory - Thank you!Michellehttp://www.blogger.com/profile/12101325070371072328noreply@blogger.comtag:blogger.com,1999:blog-4364307965283349155.post-27424516067294341982010-01-11T01:23:00.005-05:002010-01-11T01:57:17.932-05:00New Semester. New ChallengesSo, 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.<br /><br />I think, for me at least, it helps if I have some sort of routine to how I organize what I need to do and what I want to do. I have a calendar that has my classes filled in as well as doctor visits, birthdays, and any deadlines I need to complete something buy (i.e. when a scholly application is due). I also have built in "no time". No time is a variation on me time. It is time I have set aside that I am not doing any favors for anyone....it's also usually specific to my sister and her teenage sons who constantly want me to do something, go somewhere. Every so often I'll tell them something like "from now until Tuesday morning I am saying no to everything....favors, help, rides....anything they feel can't wait they are more than welcome to find somebody else to say yes but it won't be me.<br /><br />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.<br /><br />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.Michellehttp://www.blogger.com/profile/12101325070371072328noreply@blogger.comtag:blogger.com,1999:blog-4364307965283349155.post-62231372946297130202009-12-21T03:18:00.003-05:002009-12-21T05:42:07.310-05:00finals, Christmas, & lupus flare all at once!First, I haven't been here in a bit due to semi-unforseen circumstances. The last couple weeks of the semester got a bit insane w/ the last minute tweaking of my final research project for English. See below and you'll get MOST of the research I did, minus some editing and revising. Thankfully that was the closest thing we had to an exam for that class as the others weren't particularly easy.lol. Had a ton of spreadsheets and databases to finish up besides studying for finals in my music aprec and office systems classes. The real bear though was that 3rd history exam. It wasn't a cummulative final but was really difficult to prepare for as over the last 3 & a half weeks of the semester we had crammed in about 500-600 years worth of European history including the Black Death, War of The Roses, 100 years War, Italian Renaissance, the French Civil War, & Christian Humanism. I am not Catholic, having grown up w/ a Baptist minister for a grandfather & Sunday school teacher grandmother but I could now tell you more than I ever cared to about the ups & downs of the Catholic Church, the Popes, Cardinals, and Bishops as well as the Babylonian Captivity of the Papacy and Concilliarism. I am sure all of this will come in useful to me as a science major. Not.<br /><br />Of course at the same time I was wrapping up the semester there was also the getting ready for next semester- registration, trips to advising, making sure all of my transfer records finally got where they needed to, and taking to financial aid to make sure what I need to have ready to review my grants and loans. Plus (this part is very good!) my advisor emailed me a scholarship app she thinks I could get that would cover 75% of my tuition for NEXT semester! So now, I have that to do and get ready to turn back in as soon as she gets back in her office after Christmas.<br /><br />Oh, and there was Christams to get ready for. Shopping to do, cleaning and getting stuff together to donate- clothes I don't wear, including some (alot!) I have never worn to go to Saint Vincents and a bunch of various new health and beauty supplies and some luxuries as well to send to the girls at Saint Jude's (women's half way house/rehab facility) and some for the Center For Women and Families. Wish I could do more but this year hasn't been easy, especially after getting laid off in march then going into my first major lupus flare in a very long time.<br /><br />And that brings up the last part of why I have been away and haven't gotten the info I wanted to posted. I was sick with a minor stomach bug which made me pretty sick for about 2 days but in the process of fighting the virus along with alot of stress my immune system went into overdrive and so I have been fighting a flare and resisting the (probably smart) idea of putting myself back on the steroids for a week or 2. Yes, they help but they also are evil. The lupus picked my joints and gall bladder to attack this time so it's been really painful and close to impossible to eat anything more substantial than a banana or glass of SunnyD. On the plus side that could be a good way to not gain wait over the holidays, huh? My last infusion of Benlysta was given to me early b/c I had to skip the October infusion due to the flu and I wanted to make sure that if I had any issues/flare it wouldn't be til after finals. That theory worked but the result has been that just a few days after finals I started getting really sick. Just glad it wasn't durring finals!Also very glad that my infusion is at 12:30 this afternoon.<br /><br />One last thing. Most people know I am on a study drug for lupus known as BenLysta or Lymphostat-B (bemulab) and I wanted to share an article I read. It was published before the Phase3 trial results were released but has some very interesting information in it. It also shows what LuAnne Novello said in her interview in an earlier post about sometimes Phase 2 trials can make it appear a drug is either more or less effective than in reality due to limited sample size. I just thought it was quite interesting and worth sharing. Let me know what ya think! http://bit.ly/5ZH8TrMichellehttp://www.blogger.com/profile/12101325070371072328noreply@blogger.comtag:blogger.com,1999:blog-4364307965283349155.post-84816754822025528472009-12-06T21:02:00.002-05:002009-12-06T21:27:14.392-05:00about me! - not that exciting a person really. lolStill working on scanning & typing up an interviews & surveys I conducted on healthcare reaform as well as the response by the U.s. Senate Minority Leader, Mitch mcConell R-KY but wil probably be a few more days before it's ready to post since I am also wrapping up my end of the semester stuff & studying for a history exam on Renaissance Europe that is worth a third of our grade for the semester. In the meantime, here is a getting to know you kinda survey that's floating around blogger.<br /><br />1. Where is your phone? right in fron of ,me- it's rarely more than a few feet away. lol<br />2. Your hair? Blonde & curly, been growing it out lately.<br />3. Your Mom? is obsessed w/ cake decorating & wedding shows lately. lol<br />4. Your Dad? has AWFUL taste in sports teams- he likes UK, The Yankees & The Patriots- YUCK!!!<br />5. Your favorite meal? Pasta<br />6. Your last dream? That I had to take more history classes- wait, that's more of a nightmare...last dream had to do w/ the Cards winning a basketball game<br />7. What do you like to drink? Iced coffee w/ skim milk & mocha<br />8. Your dream? to finish school & go into pharmaceutical research<br />9. In what room are you? my bedroom, listening to the Vikings game & studying<br />10. Your hobby? taking care of my nails<br />11. What are you afraid of? spiders, loneliness<br />12. Last travel? Seymour Indiana<br />13. Where were you last night? In bed by 11!<br />14. Something you are not? Tall, stupid<br />15. Muffins? cranberry orange<br />16. Wishlist? a cure for lupus, my own house<br />17. Where did you grow up? LOUISVILLE!!!<br />18. Last thing you did? sent a txt, polished my nails in Christmas colors (SH Hearts On Fire w/ China Glaze Emerald Sparkle ring fingers<br />19. What are you wearing? My flannel football PJ pants & Denver Broncos t-shirt<br />20. Your television? a 32"inch Samsung widescreen, great for watching football or movies<br />21. Your pet(s)? Dillon (my AmStaff), Biggie (a maltese puppy) Bernie (Bassett), & Stacey (Boxer mix)<br />22. Your friends? tend to think I am insane. (they may be right.lol)<br />23. Your life? Under construction :)<br />24. Your temper? is usually under control but not always<br />25. Do you miss someone? Yes.<br />26. Your car? needs to be worked on<br />27. Something you don't bring with you? depends where I am going- usually my dog, most places won't let me bring him<br />28. Your favorite shop? coffee shops or bookstores<br />29. Your favorite color? pink <br />30. Last time you laughed? really hard would have been last night @ my baby nephew- he's so cute & funny!!!<br />31. Last time you cried? a few days ago I think<br />32. Your best friend? am lucky enough to have 2<br />33. A place where you can go again and again? Disney World, the beach<br />34. Facebook? of course<br />35. Favorite place to eat? Cracker Barell or Rocky'sMichellehttp://www.blogger.com/profile/12101325070371072328noreply@blogger.comtag:blogger.com,1999:blog-4364307965283349155.post-55420505514016260062009-12-01T21:31:00.003-05:002009-12-01T21:43:33.793-05:00There is no cure!Just a quick vent. I have been getting a ton of emails & seeing lots of tweets about "How I Cured My Lupus" or fibromyalgia, MS, RA....etc. Even some claiming to have cured a food allergy which may be the most dangerous claim of all since every allergist I have ever talked to has said they won't even attempt to treat food allergies w/ anything except avoidance because they are too unpredictable & one of the most sever reactions along w/ bee stings and latex. My doctors and nurses have tried everything they thought might help my lupus- FDA aproved or off label- but nobody has EVER realistically thought that eating certain foods will cure lupus, fibro, or anything else these people claim to be able to cure. As far as I know food will not cure anything other than starvation. Yes, it is important to eat right in order to be healthier but there is no magic food and there is no conspiracy by the drug companies or researchers to hide the "Secret Cure" that could lead to people being healthier, more productive...etc. I hate to see people trying to take advantage of someone else's desire to feel better & trying to sell fake cures....especially since those claims often say you'll be able to reduce or stop your meds & if somebody who really is sick stops there meds it can lead to SERIOUS problems. OK, rant over. Just had to say something about it after seeing so many of these "testimonials" (ADS!) the past couple days.Michellehttp://www.blogger.com/profile/12101325070371072328noreply@blogger.comtag:blogger.com,1999:blog-4364307965283349155.post-28289815997026631222009-11-26T03:01:00.001-05:002009-11-27T01:49:09.621-05:00Thanksgiving and hopefully some restFirst of all, Happy Thanksgiving!<br /><br />My mom made Thanksgiving dinner today and we had our celebration tonight w/ me, my mom, stepdad, sister, and my three nephews who I adore....and oh yeah, can't forget the dogs! It was yummy and a really great dinner despite my 17year old nephew, Shawn, being really obnoxious today. I love him but sometimes I don't know what to do with him....like when he says I am dumb just because my favorite team and his aren't the same. lol. The worst one though is when he or his 14year old brother get frustrated over me saying no to them about something.<br />They have had it tough at times I know. My sister has definitely had her issues and didn't really make much attempt at being a good parent until almost 3 years ago and their dad wasn't a whole lot better. My mom, along with my stepdad, has pretty much had them their whole life and I try to do as much as I can but it's hard. Justin, the 14year old, lives here but visits both his mom's apartment and his dad's house regularly. My sister has been making alot of positive changes in her life though, especially after having Michael (he'll be 20months next week) and Shawn lives with her now. Justin tried to do that but still has a lot of resentment towards her and never stays more than a couple nights when he goes to visit. The problem is he gets jealous over both of his brothers at times and won't admit it so instead he comes home in a foul mood and takes it out on somebody (or sometimes everybody) here. Often this person is me, generally after I tell him "no" about something he wants me to do for him. Like I said, I try to do as much as I can but sometimes I have to say no. Like this week w/ the fibro flaring and a ton of stuff I've been trying to finish up for school with finals only 2 weeks away for most of my courses (or next week for music appreciation). Almost all of my time right now is school, trying to de-stress as much as I can, and arranging myself as comfortably as I can to try and rest. I have tried to explain but he doesn't understand why I spend so much time studying or how bad I feel sometimes. When I remind him how tired and sore I feel he smarts off that I am faking it.<br /></p><p>I wish I knew how to word what I say so that he does get it and realizes when he acts like that it just stresses me even more and that =more pain!<br /></p><p><br /> </p><p>On the plus side I turned in my last research project today &amp; got my grade back on another. So far the ones I have back in English have all been max points as was my phishing scam article for my office system course and I got an A (no % or points listed though???) so now it's just finishing up some databases &amp; power-point for OST &amp; getting ready for tests. I can see the light to our month long break and I am ready!Michellehttp://www.blogger.com/profile/12101325070371072328noreply@blogger.com0tag:blogger.com,1999:blog-4364307965283349155.post-12470524684439574652009-11-24T22:25:00.000-05:002009-11-24T22:32:56.019-05:00my final paper of the semesterMy first semester back in school after too many years to count is almost over & for my writing class we had to choose a topic, localize it to ourselves or our community, and write an informative and persuasive or argumentative research paper on it. As a lupus patient and pharmacology major it was pretty easy for me to choose my topic. There hasn't been a single new treatment aproved for lupus in over 50 years. Lupus research is underfunded federally and this has to change. I wrote my paper on pharmaceutical research and why there needs to be more attention paid to diseases like lupus. I also wrote some about my experiences as a research patient and being part of the clinical trials for Benlysta, which could be the first new medicine aproved for lupus since Eisenhower was president. I may be wrong but I am 99.9% sure it's also the FIRST medication successfully developed specifically for lupus treatment.<br /><br />I posted the paper a few minutes ago in a much longer entry if anybody wants to see what I have learned about lupus, how pharmaceutical research works, and what it's like being part of the clinical trials and being one of the first to recieve a new drug (I have been on BenLysta since phase 2 trials began and was one of the first about 500 people to recieve the drug).Michellehttp://www.blogger.com/profile/12101325070371072328noreply@blogger.com0tag:blogger.com,1999:blog-4364307965283349155.post-13292290603638793262009-11-24T22:08:00.000-05:002009-11-24T22:25:37.850-05:00Researching New Treatments<br /> <br /> The United States spend around 130 billion dollars each year on medical and pharmaceutical research. Why then has it been over 50 years since a new treatment for lupus has been approved and brought to market? <br /><br /> Before we can begin to figure out what needs to be done and why researching and developing new treatments for lupus is important it helps to understand a bit about what the disease is and how it affects people. Lupus is an autoimmune disease in which your immune system attacks your own organs and tissue much the same way it would an infection- basically you are allergic to yourself. Lupus can affect any organ in the body and among the most commonly attacked organs are the skin, joints, lungs, and kidneys. 90% of lupus patients are female, most often diagnosed during their childbearing years. There is no known cure and the symptoms of the disease are often life diminishing and potentially life ending, especially when involved organs include the kidneys, lungs, heart, or liver.<br /><br /> There are only three medications currently approved for the treatment of lupus: aspirin, prednisone, and plaquenil. All of these have dangerous side effects which can be as problematic as the symptoms they are intended to treat. Aspirin is a common cause of stomach problems ranging from nausea to severe stomach ulcers and also acts as a blood thinner which can make it more difficult for blood to clot when someone has an injury such as a cut. It is also one of the most common drug allergies seen. <br /> <br /> Plaquenil is an anti-malarial with common side effects such as Nausea, stomach cramps, decreased appetite, diarrhea, dizziness, and headache. Other side effects often seen with plaquenil include fast heartbeat, hair loss/color change, mental/mood changes, ringing in the ears/hearing loss. Among the most serious side effects though are blurred vision and glaucoma. Then there is the most commonly prescribed drug for lupus- prednisone. Prednisone is a steroid medication which often causes changes in mood, weight gain, difficulty fighting infections, and brittle bones. As you can see, these drugs cause as many problems as they solve.<br />We desperately need to find newer, safer, and less toxic treatments for lupus. In order to do this we need to increase funding for research into new treatments for this disease and others like it. <br /><br /> I am a lupus patient and also a research patient. The primary medications for controlling and managing my lupus are Imuran, an anti-rejection drug being used off label to help prevent further kidney involvement and what I think of as my miracle drug, Lymphostat-B. Lymphostat-B, also known as BenLysta is an investigational drug currently being studied for the treatment of lupus. <br /> <br /> Before discussing BenLysta and how it affects me specifically, it might be helpful to know a little about how pharmaceutical research and development works. There are many different things that go into developing new treatments and many different people involved at each stage from the conception of the idea to it becoming available for use. It starts with the scientists and pharmacists who develop an idea or model for a new treatment for a disease or class of diseases and ends finally with the patients who receive the drug during clinical trials that test for safety and efficacy of the treatment before the Food and Drug Administration will consider it for approval.<br />I interviewed Lu Anne Novello, the Director of Clinical Operations for Human Genome Sciences. Human Genome Sciences is the research group developing BenLysta in partnership with the pharmaceutical company Glaxo-Smith Kline. She has worked in pharmaceutical research for 27 years after graduating from the University Of Connecticut School Of Pharmacy in 1982 with her Doctorate of Pharmacy. Ms. Novello explained how research projects are chosen: <br /> "Drug or biologics can be specifically engineered based on a model or an existing protein and then tested on a specific target. Or a compound could theoretically have more than one therapeutic target. In that instance preclinical studies (work in tissue or animal models) are conducted to help define what indications may have the greatest chance for success in humans. The identified disease areas are also evaluated to determine medical need. The following are considered: how many patients have the disease, how many other products are currently on the market and might your drug have a benefit (greater safety or better efficacy) than what is currently available. Often multiple indications for a product are pursued in parallel. The first one that completes the required testing will be submitted to the regulatory agencies as the initial NDA (New Drug Application) or BLA (Biologic License Application). Other indications are then submitted later in supplemental filings. She also explained to me that all treatments, both chemical and biologic, are subject to many levels of testing before ever being tested in human subjects during clinical trials. All new drugs are put through a series of preclinical experiments testing both the drugs potency and how it acts against different sets of cells. This is done first in a dish, then in rodents, and finally in primates before ever being tested in humans. At each stage of this process different doses are tested for safety and whenever possible for efficacy."<br /><br /> After the preclinical trials are completed the new treatment is ready for tests in humans. There are four different phases of clinical trials which are conducted in humans. <br /><br /> Phase one trials are done in a very small number of, usually healthy, people in order to test for safety (side effects and toxicity) and pharmacokinetics (level of drug in the bloodstream). At this stage there are generally a couple of different dosing levels evaluated in different subject groups. If these tests are successful the drug may move on to phase two studies.<br /><br /> During the second phase the drug is tested in patients with the target indication. This is the first time that the drug is used in patients who have the condition the drug is being developed to treat. Like in phase one, different dosages are looked at for safety but now it is being looked at for efficacy in humans as well. The researchers want to see if the drug behaves as predicted and is safe for patients who are afflicted with a given condition. Because phase two is in large part evaluating safety it is conducted in a small number of patients studies during this phase are considered “underpowered” meaning there is still a risk of statistical error. A drug could possibly be effective but appear not to be due to the small sample size, or vice versa- it may appear effective but turn out not to be any more effective than a placebo or a current standard of care.<br /> <br /> Next, if phase two has been successful, is phase three which the new drug will be tested in a larger number of patients. This round of trials examines the drug’s efficacy against current standard of care as well as providing further data on the safety of the drug in a larger number of its’ intended recipients. There are generally at least two different phase three studies and all of these should show comparable results. If these trials show the drug to be safe, effective, and have the potential for improvement in the standard of care for patients then the data is submitted to the FDA and other regulatory authorities for approval.<br /><br /> In addition to Lu Anne Novello, I interviewed Kathy Benish. Ms Benish is the Research Administrator for Kentucky Research. Kentucky Research is a research department involved with conducting clinical trials and is a part of the Kentuckiana Center for Better Bone & Joint Health run by Dr. Steven Stern. She is also the nurse and coordinator overseeing the study I am in and explained the role of the doctor’s offices or clinics in the research process, “The Dr.'s office/clinic is where the trials are being conducted. We are pivotal in getting new drugs to market or approved drugs for a new indication to market, new treatments for patients, and offer treatment options to patients that otherwise would not be available”.<br /><br /> Kentucky Research is currently involved in several clinical trials for lupus and rheumatoid arthritis and in response to being asked what she saw as being most important to help increase the development of new, more effective, and safer treatments for diseases such as lupus Ms. Benish said patient education and involvement is important along and funding for research. “Cost is a huge factor in developing new drugs” then added, “Insurance companies are reluctant to cover patients if they are in a trial. This is a big factor in patient recruitment.” Insurance companies’ refusal to cover patients in studies adds to a patient’s out of pocket medical costs and acts as a deterrent to potential recipients sometimes making it harder to recruit participants for clinical trials. This is despite the fact the group developing the treatment covers the costs for treatment, labs, and visits to the study doctor.<br /> <br /> Funding the research for new treatments is one of the biggest problems and something that needs to change. The National Institute of Health publishes its’ research expenditures on its' website each year. It lists what it actually spent on lupus research in 2008 as 126million dollars and includes a projection of 129million in 2009 and 130million in 2010. In contrast, the same page lists 245million in actual spending on herpes and related conditions in 2008 with spending predictions of 251million in 2009 and 255million in 2010.<br /><br /> I stated before that I am both a lupus patient and a research patient. I have been part of a phase four or post-market study for Imitrex and phase three studies for Relpax and Amerge. These are three different migraine medications. These have all come out in the past 20 years along with other medications such as Zolmig, Treximet, and several others. While I am grateful to have these drugs available it perplexes me as to why we have made so many advances in how to treat a migraine yet there has been nothing new for lupus?<br /><br /> Thankfully that may change soon. The study drug I am on for my lupus has successfully completed phase three testing and is expected to be submitted to the FDA and European regulating agencies in the first half of 2010 and may be available for doctors to use in the treatment of lupus patients later in the year. <br /><br /> This study has been very rewarding to be a part of in a couple of ways. First, it actually helps my lupus. I have been on this drug since before it actually had a name. It was simply LBSL-99 when I began receiving it during the first phase two trials over six years ago and was also referred to as Lymphostat-B, probably because it acts by inhibits the biological activity of B-lymphocyte stimulator in order to suppress the immune system. Before receiving the drug I had many days where I was in so much pain and so ill I could not even walk down the stairs at home, much less work or think about finishing my degree. After the first few treatments I began to feel an improvement in my pain and energy levels and my labs started to improve. After six months I tried returning to work and was able to survive the Christmas season in retail. I still have bad days or weeks at times but thanks to BenLysta, my miracle drug, those days are fewer and more manageable.<br /><br /> The real reason why this study has been so rewarding for me is knowing that by participating in this trial and acting as a “human guinea pig”, as my friends have referred to me before, I am helping other lupus patients. I get asked quite often by my fellow “lupies” what the medication is like and if it really helps. Without a doubt it has helped me and when one of my friends who also has lupus thanked me for trying the drug out first it made me smile because I realized that I wasn’t just helping myself, I was helping them too. One of the comments made by Kathy Benish in her interview was, “without patients, we could not do the trials and new drugs would not come to fruition”. <br /> <br /> Participating in the trial for BenLysta has taught me many things and has motivated me to return to school and pursue a degree in pharmacology. Even more, it has shown me that there is something that can be done to improve the quality of life for the millions of people worldwide who are living with lupus. We just need to prioritize how we’re spending precious research dollars and pay a little more attention to a disease that is life diminishing, and in about 15% of cases life ending.Michellehttp://www.blogger.com/profile/12101325070371072328noreply@blogger.com1tag:blogger.com,1999:blog-4364307965283349155.post-83269877902093986422009-11-22T04:53:00.001-05:002009-11-22T05:03:03.887-05:00Pit BullsThis is another paper I wrote for my writing class, and it's about a topic very dear to my heart. I hope maybe that I can help open a few eyes to what wonderful dogs pits can be if cared for properly and if they have people who are willing to take the time to learn about these wonderful dogs!<br /> <br /> About Pit Bulls & Why They Shouldn't Be Banned<br /><br /></p><p><span style="font-family:Times New Roman;font-size:12;">Before anybody seeks to outlaw or ban something, shouldn't they first be able to define it? Then, if they can define it, shouldn't they seek to understand it?<br /></p><p></span><br /> </p><p><span style="font-family:Times New Roman;font-size:12;">There are many people, on both sides of the debate surrounding "pit bulls" and the issue of whether or not they should be banned. A large percentage of those people can't accurately define a pit bull or don't even realize that the term "pit bull" doesn't refer to a specific breed but rather a loosely defined group of breeds.<br /></span></p><p><span style="font-family:Times New Roman;font-size:12;">According to a February 2007 article titled "Is This Dog Dangerous" written by Cameron Lawrence for Louisville Magazine, "The pit bull is not recognized as a breed per se but rather as a type - a descriptor of several breeds of dogs with similar physical characteristics." The article goes on to say this commonly includes the American Pit Bull Terrier, the Staffordshire bull terrier, and the American Staffordshire terrier among others.<br /></span></p><p><span style="font-family:Times New Roman;font-size:12;">Generally pit bulls are described as "a medium sized, squarish dog usually weighing 40 to 60 pounds with a short coat revealing their strength. They are sometimes referred to as 'dog body builders' or more commonly 'the bully breeds". These dogs also tend to be "intelligent, confident, and loyal" though their critics say they are "hyper-aggressive and unpredictable". (Lawrence)<br /></span></p><p><span style="font-family:Times New Roman;font-size:12;">My experience, as someone who has had dogs her entire life including three American Staffordshire Terriers in addition to a Basset Hound, Maltese, Cairn Terrier, Beagle, and Dobermans to name just a few, is that these dogs are extremely loyal and intelligent dogs that will do anything to please their owner.<br /></span></p><p><span style="font-family:Times New Roman;font-size:12;">As stated by Lawrence, this group of dogs descended from breeding a mix of various bulldogs and terriers. Several of the resulting breeds were recognized by the American Kennel Club (AKC), begin with the American Staffordshire Terrier in 1936, and have set and recognized breed standards. The breed standards define the ideal build, color or markings, and temperament for the breeds.<br /></span></p><p><span style="font-family:Times New Roman;font-size:12;">The so called "bully breeds" fall in the terrier group which includes dogs such as Yorkies and Scotties. The terriers, as a group, require training, discipline, and an owner who knows how to handle them since, again as a group, terriers are generally described as being "strong willed".<br /></span></p><p><span style="font-family:Times New Roman;font-size:12;">Marcy Setter is the director of education and public relations for a large rescue group known as Pit Bull Rescue Control which is based in Missouri. Lawrence spoke with her during research for his article. She points out that pit bulls are merely the latest dogs to be targeted as dangerous or vicious and that the fear of aggression toward people is overblown, "This is really easy. It rotates every 10 years or so. Back in the 70's it was the German shepherds. In the 80's it was the Dobermans. In the 90's it was the Rottweillers. Now it's the pit bulls." She pointed out that while pits may have some tendencies toward dog aggression other breeds, including the Great Pyrenese and Australian Cattle Dog, have been bred for that same tendency. She insists "pits were never bred for human aggression". (Lawrence)<br /></span></p><p><span style="font-family:Times New Roman;font-size:12;">My personal experiences as a dog owner, and specifically a "pit bull owner" back up this assertion as well as the description of them being intelligent and loyal. For example our first "pit" was an American Staffordshire Terrier named Caesar. We had Caesar when I was in middle school. He was a very intelligent and well behaved dog who went a lot of places with me including walks to the corner store after school most days. The owner even allowed him into the store while I shopped because he was so well behaved. One such afternoon, after completing our shopping, we were headed back home when a clearly intoxicated man bumped into me. Caesar was, of course, protective of me. When the man bumped me, Caesar rose up on his hind legs and used his front paws to push the man away from me but didn't attack or present any vicious tendencies whatsoever, just a message to "back off and leave her alone". The man was a bit startled by this but did continue on his way leaving us to continue on home with no further incident.<br /></span></p><p><span style="font-family:Times New Roman;font-size:12;">Lawrence interviewed Linda Laun, a local dog trainer, who had this to say "some breeds have a heightened alert mechanism" and "these dogs are a bit weary of unusual circumstances, less accepting of new experiences." This trait, she says, can make them useful as guard dogs. She includes "German Shepherds, Dobermans, and some types of pits" as being examples of such breeds. However she adds "these breeds have no more propensity for causing harm, or likelihood of causing harm than a Golden Retriever, a Yorkie or any other."<br /></span></p><p><span style="font-family:Times New Roman;font-size:12;">I can attest to that as out of all the dogs I have ever owned or known only one has ever been determined by animal control authorities to be a "dangerous dog". The dog wasn't a pit, a Doberman, or any other medium to large dog. It was my dad's seven pound miniature pinscher, Bud who bit, of all people, the homeowner's insurance adjuster. Yet, nobody is seeking to ban miniature pinschers or any other small breed.<br /></span></p><p><span style="font-family:Times New Roman;font-size:12;">Dangerous dog ordinances have been passed in cities across the country. Some locales, such as Denver, Colorado and Bracken County, Kentucky have instituted breed-specific laws or bans that are aimed at "pit bull dogs". (Lawrence) These laws fail to recognize that any breed or individual dog has the potential to be dangerous and cause harm to a person or another animal.<br /></span></p><p><span style="font-family:Times New Roman;font-size:12;">PETA (People for Ethical Treatment of Animals) is a large and well known animal rights organization that supports a ban on ownership and breeding of pit bulls "as long as they include a grandfather clause allowing all living dogs who are already in good homes and well cared for to live the remainder of their lives safely and peacefully". According to PETA pit bulls are the most abused group of dogs in the United States. They use that statement to justify their support of banning these dogs. They also state that a large portion of people who seek to own pit bulls do so because they "are attracted to the 'macho' image of the breed as a living weapon". These people then encourage aggression in the dogs by abusing them in various ways including physically restraining the dogs with heavy chains in all weather extremes as well as kicking or beating them to make them tougher and thus more aggressive. They are basically stating they want to ban pits to protect them from cruelty but that would be punishing the dogs for the bad behavior of people and is not the way to solve the problem.<br /></span></p><p><span style="font-family:Times New Roman;font-size:12;">Despite their support of laws banning them, PETA does do some admirable work with pit bulls such as rescuing them for abusive or negligent owners in addition to speaking out against dog fighting, and subsidizing spay and neuter programs. They admit that pits can be loving companions and the problem is with or caused by cruel and irresponsible owners. (PETA)<br /></span></p><p><span style="font-family:Times New Roman;font-size:12;">Why, then, punish the dogs? Shouldn't we instead punish the people who are mistreating them and encouraging this aggressive and overly territorial behavior?<br /></span></p><p><span style="font-family:Times New Roman;font-size:12;">PETA contacts "cruelty case prosecutors" when they rescue abused dogs, which staffers and volunteers do everyday. They have personally witness thousands of pit bulls who have been treated reprehensibly by their owners. Dogs like "Bear who was permanently chained outside and suffering from several painful conditions, including flystrike and a skin condition his owners tried to 'cure' by pouring motor oil all over him".(PETA) Bear wasn't the problem here, his owners were. They were the ones who were cruel and caused harm, not the dog. Again, why punish the dogs for the actions of people?<br /></span></p><p><span style="font-family:Times New Roman;font-size:12;">Perhaps, instead of supporting laws banning pit bulls, it would make more sense if PETA and others worked to strengthen laws that protect dogs from abuse and promote harsher penalties on irresponsible owners who subject the animals to the abuse and neglect often witnessed by shelter and rescue group volunteers.<br /></span></p><p><span style="font-family:Times New Roman;font-size:12;">Here in Louisville there have been proposals to outlaw pit bulls and in January of 2007 the city council instituted re-vamped animal control laws. Due to protests and outcry from owners, breeders, and the local branch of the AKC the breed specific wording was removed and the law applies to all dogs and their owners. It restricts the selling of "dangerous" and "potentially dangerous" dogs as well as defining what constitutes a "dangerous dog". The law defines a dangerous dog as "any dog that has been used in dog fighting, injured or killed a person in an unprovoked attack, a dog that attacks or injures other pets or livestock, or is used in the commission of a crime. It defines a potentially dangerous dog as one that "bites or harms someone in an aggressive manner or attacks and injures another pet or livestock."(Lawrence)<br /></span></p><p><span style="font-family:Times New Roman;font-size:12;">Again, I've had dogs all my life and the only one I've ever known that has been declared by animal control to be "a dangerous dog" is a tiny, seven pound miniature pinscher.<br /></span></p><p><span style="font-family:Times New Roman;font-size:12;">As the International Association of Canine Professionals (IACP) says, "breed specific legislation does not protect communities nor create a more responsible dog owner" and "limiting the risk of dog bites should be the legal responsibility of the dog owner". They point out that it is more than the breed or physical appearance of a dog that determines its disposition and personality. The factors involved include, but are not limited to, genetics, training, socialization, health, supervision, adequate shelter, and general care a dog receives.<br /></span></p><p><span style="font-family:Times New Roman;font-size:12;">Thus, it is logical to say, as stated in the IACP's position statement, "The vast majority of dogs typically affected by breed-specific legislation are not 'dangerous" by any standard" and should not be judged by phenotype or physical appearance. Laws directed at any specific breed unfairly punish not only the dogs but also responsible dog owners which includes the majority of people who own any dog. This is a point worth repeating. Don't punish a dog just because of how it looks. In my experience, just as with people, a dog's appearance can be quite deceiving.<br /></span></p><p><span style="font-family:Times New Roman;font-size:12;">At the same time we had Caesar we had a small dog too. Peppy was a Cairn Terrier and maybe about 6 inches tall. (For those who aren't familiar with them, Cairns look similar to a Scottie). Caesar, by contrast was 22inches at the shoulders and his jaw muscles made it look like he had baseballs in his mouth. Peppy, however, was the "mean one" and was much more likely to snap or bite. Peppy actually did bite my sister twice, Caesar never so much as looked at one of us the wrong way. This, I think, helps to demonstrate why you should never judge by appearances.<span style="TEXT-DECORATION: underline"><br /></span></span></p><p><span style="font-family:Times New Roman;font-size:12;">There is no such thing as a bad breed but there are many bad owners. It is up to people to be a responsible owner and take proper care of their dogs. This includes obvious things as providing proper shelter, food and water but it also includes less obvious things such as training, socialization, and supervision of all pets. It also includes strengthening (and enforcing) "dangerous dog" laws which are not breed specific and animal cruelty laws that help to protect dogs from the harm they suffer at the hands of people.<br /></span></p><p><span style="font-family:Times New Roman;font-size:12;">We have four dogs in our house right now. Among them we have Stacey, a Border Collie mix, and Dillon, my American Staffordshire Terrier (one of the "pit bull types"). Stacey absolutely bullies Dillon. If he walks past her dog bowl she stands guard over it and lets out a low growl, if he gets near a treat or toy she thinks is hers, she snaps or growls at him. (Actually she does the same thing with the other dogs in the house too, she is definitely the "alpha dog" in the group). Dillon is, by far, bigger and stronger than she is yet he is cowered by her and will tuck his tail and run away if she even looks at him sideways.<br /></span></p><p><span style="font-family:Times New Roman;font-size:12;">Stacey and Dillon were playing in the back yard one afternoon, chasing two tennis balls I was throwing for them and having a lot of fun. I needed a quick break so I tossed the balls to them and went in the house to get something to drink. I was inside for about five or ten minutes then went back outside where I found Stacey had decided both balls were hers. She had one tennis ball in her mouth and the other between her front paws while she stared Dillon down, watching every move he made. When he would come near, or when she thought he was trying to come near and take one of the tennis balls Stacey would let out a low growl that steadily got louder. Dillon's reaction to this was to look at her like he was pouting, tuck his tail, and slink up onto the deck where he lay down at my feet not daring to go back out into the grass and try to play any longer.<br /></span></p><p><span style="font-family:Times New Roman;font-size:12;">My big "bully" is definitely not the bully in this house and despite what many claim, I have never witnessed any of the pits I have known be the bullies they are made out to be. That title has always fallen to the dogs who are supposed to be "harmless", not the big, bad "pit bulls".<br /></span></p><p><span style="font-family:Times New Roman;font-size:12;">Banning pit bulls is not the answer. Teaching and enforcing responsibility and accountability in the people who raise not only pits, but all dogs, is the only answer there can be.<br /></span></p><p style="TEXT-ALIGN: center"><br /> </p><p style="TEXT-ALIGN: center"><span style="font-family:Times New Roman;font-size:12;">Works Cited<br /></span></p><p style="TEXT-ALIGN: center"><span style="font-family:Times New Roman;font-size:12;">Lawrence, Cameron. "Is This Dog Dangerous?" <em>Louisville Magazine.</em> February 2007.<br /></span></p><p style="TEXT-ALIGN: center"><span style="font-family:Times New Roman;font-size:12;">Web. 24 August 2009<br /></span></p><p style="TEXT-ALIGN: center"><span style="font-family:Times New Roman;font-size:12;">"Position Statement on Breed Specific Legislation"<br /></span></p><p style="TEXT-ALIGN: center"><span style="font-family:Times New Roman;font-size:12;"><em>International Association of Canine Proffessionals. </em>IACP, 2006. PDF file.<br /></span></p><p style="TEXT-ALIGN: center"><span style="font-family:Times New Roman;font-size:12;">"PETA: Position On Pit Bulls" <em>PETA.</em><br /><em>About PETA. </em>Web. 25 August 2009.</span>Michellehttp://www.blogger.com/profile/12101325070371072328noreply@blogger.com0tag:blogger.com,1999:blog-4364307965283349155.post-54445900328243810792009-11-22T01:38:00.001-05:002009-11-22T01:47:33.529-05:00my interview w/ a research nurseThis is the second interview I conducted while working on my project about pharmaceutical research. This time I interviewed Kathy Benish who runs the Kentuckiana Research Center with Dr. Steven Stern. She is a nurse, holding her masters of nursing as well as being a registered nurse, and has worked both in bedside nursing and clinical research.<br /><br />1) <strong>What is the most rewarding part of your job? The most challenging? </strong> One of the most rewarding parts of my job is that due to my involvement with Research, I can be a part of changing the way medicine is practiced in the future. When I was bedside nursing, I felt my major impact was with the patient and their families. While I feel that this is very important, what we do affects people on a global scale. Some other rewarding benefits is getting to see the progression of the patients in the trials & being on the cutting edge of your specialty.<br /> <br />Most challenging parts are being the mediator & contact person between the patient & the Dr., the Dr. & the Sponsor of the trial, the CRO (Contract Research Organization) and the Dr., the IRB (Internal Review Board), and following the protocol (how the study is to be conducted). Sometimes I feel I am being pulled in a hundred directions, all for the same cause. Everyone wants things their way and sometimes that is just not possible. Then you have to remember that you are dealing with patients who don't always follow the rules for whatever reason(because they forget, they don't want to or they get sick & can't). Patient recruitment can also be very challenging. <br /><br /><br />2) <strong>How are research studies chosen?</strong> Clinical Trials are sponsored/funded by a variety of organizations or individuals such as: Physicians, Medical Institutions, Foundations, Voluntary Groups and Pharmaceutical Companies, in addition to federal agencies such as the National Institutes of Health (NIH), the Department of Defense (DOD) & the Department of Veteran's Affairs (VA). In our office, we choose trials that look at the disease processes that are pertinent to our practice.<br /><br /><br />3) <strong>Who plays a bigger role in funding research, the government or the pharmaceutical companies?</strong> This is a toss up. In our world, it is the Pharmaceutical Companies.<br /><br />4) <strong>What part does the research center or Dr's office play in treatment development?</strong> The Dr.'s office/clinic is where the trials are being conducted. We are pivotal in getting new drugs to market or approved drugs for a new indication to market, new treatments for patients, and offer treatment options to patients that otherwise would not be available. <br /><br /><br />5) <strong>How would you explain the difference in phase1, 2, or 3 trials to somebody who had never participated in a clinical trial?</strong> Phase I: is the initial introduction of an investigational new drug into humans. First time tried in human beings, closely monitored, and designed to determine the metabolism and actions of the drugs in humans. Phase II: evaluates the effectiveness of the drug for a particular indication (like SLE or RA) to determine the common short-term side effects & risk associated with the drug. Phase III: are intended to gather additional information about the effectiveness & safety that is needed to evaluate the overall benefit-risk relationship of the drug and to provide an adequate basis for physician labeling (dose, route, etc). Usually done on a larger number of patients than the Phase I & II trials & monitors side effects closely. Phase IV: these are post marketing studies (drug has been approved) and are done to gather additional information on risks, benefits and optimal use. <br /><br /><br />6)<strong>What do you see as the most important thing that can be done to help increase the development of new, safer drug therapies for chronic illness?</strong> Patient education about trial involvement is important. Without patients, we could not do the trials and new drugs would not come to fruition. Money for research. Cost is a huge factor in developing new drugs. Insurance companies are reluctant to cover patients if they are in a trial. This is a big factor in patient recruitment. Security is also crucial. Researchers spend millions of dollars developing a drug only to have it stolen or sold to other companies & countries. Punishment for this needs to be swift and firm. I am sure there are many other factors beyond my comprehension but these are a few that come to mind.<br /><br /><br />7)What new treatments are you involved with studying and what phase are the trials in? We are studying several new drugs for Rheumatoid Arthritis, Lupus and getting ready to start a Gout trial and possibly Osteoarthritis Trial. We do not do Phase I trials in the office. Our trials are Phase II & III. We have a Phase IV trial that we have been doing for approx. 5 yrs that is also being used as a Registry for several disease states that allows Dr.s to see how others in their fields are doing things.Michellehttp://www.blogger.com/profile/12101325070371072328noreply@blogger.com0tag:blogger.com,1999:blog-4364307965283349155.post-75192714428519130082009-11-22T00:49:00.001-05:002009-11-22T01:21:23.892-05:00My argument for & research on healthcare reform<span xmlns=""><p style="TEXT-ALIGN: center" align="left"><br /></p><p style="TEXT-ALIGN: center"><br /> </p><p style="TEXT-ALIGN: center" align="justify"><span style="font-family:Times New Roman;font-size:12;color:black;"><span style="font-size:130%;color:#330033;">This is a paper I wrote on healthcare reform and what I think needs to be done.</span></span></p><p style="TEXT-ALIGN: center"><span style="font-family:Times New Roman;font-size:12;color:black;"><span style="font-size:130%;">Healthcare Reform in America and Why We Need It</span><br /></p></span><p style="TEXT-ALIGN: center"><br />We have all <span style="font-family:Times New Roman;font-size:12;"><span style="font-size:100%;">heard the rhetoric on the evening news about healthcare reform and we have all seen the commercials promoting different viewpoints on the issue. What exactly are they trying to change though and how do the people (i.e. the patients and healthcare providers) feel about what needs to be done?<br /></span></span></p><p><span style="font-family:Times New Roman;">Healthcare is one of our biggest national expenses yet millions of Americans are without easy access (or in some cases any access) to quality healthcare. Health insurance companies make billions of dollars in profit each year according to the stories we see on TV or in the newspaper while denying coverage to millions, like me, because they either have a pre-existing condition or are seen as "high risk" due to things such as age, family background, past illness, or family history of particular illnesses. In essence saying "you can't have health insurance because you might actually need to use it". There is no perfect solution to our healthcare crisis but something must be done to allow more Americans access to quality medical care- both treatment for illnesses and preventive care to minimize the risk that a person will suffer from a catastrophic illness.<br /></span></p><p><span style="font-family:Times New Roman;">The website www.barrackobama.com includes a page outlining President Obama's goals on this matter. It lists quite a few but chief among them are:<br /></span></p><ul style="MARGIN-LEFT: 108pt"><li><span style="font-family:Times New Roman;">Ending discrimination by insurance companies against people because of age, gender, or preexisting conditions.<br /></span></li><li><span style="font-family:Times New Roman;">Capping out of pocket expenses so people don't go broke because they get sick<br /></span></li><li><span style="font-family:Times New Roman;">Provide tax credits to help people buy insurance<br /></span></li><li><span style="font-family:Times New Roman;">Immediately offer new, low cost coverage through a national "high risk" pool to protect people with preexisting conditions from financial ruin<br /></span></li><li><span style="font-family:Times New Roman;">Require large corporations to cover their employees as well as requiring people who can afford to do so to buy insurance so that everyone shares in the responsibility of reform<br /></span></li><li><span style="font-family:Times New Roman;">Order immediate malpractice reform projects that could help doctors focus on putting their patients first, not on practicing defensive medicine.<br /></span></li></ul><p><span style="font-family:Times New Roman;">The first health insurance plans resulted in a downturn in the U.S. economy in the 1920s leading up to the Great Depression. During the 1920s and the decade prior medical knowledge and technology had increased rapidly and for the first time the requirements for being a physician had become stricter requiring more formal education and training. These were, of course, important developments in human welfare but also added to the expense of treating illness and by the '20s, for the first time, a week's hospital stay became more expensive than the average American family's monthly income. People couldn't afford to get sick. Economist Lou Reed said at the time, "Very few of these families are indigent in the accepted meaning of that word. They have a home, they buy their own food and clothing and pay their doctor's bills in ordinary illness but when serious illness occurs, these families are unable to pay their way." (Cohn. 2008. p.6.) A blue ribbon commission, after spending five years conducting the first national census on healthcare, recommended that Americans share collective responsibility for medical costs. "In other words, it recommended the creation of insurance for medical care". (Cohn. 2008. p.6)<br /></span></p><p><span style="font-family:Times New Roman;">Industrial countries, other than the U.S., were beginning to guarantee the availability of medical care to their citizens either through government sponsored organizations or directly through the government itself. They were making healthcare a right rather than a luxury. In the United States this was strictly opposed by physicians worried about outside interference in how medicine was practiced and also by large corporations which feared government managed medical care would lead to interference elsewhere in the private sector. (Cohn 2008)<br /></span></p><p><span style="font-family:Times New Roman;">Patients weren't the only ones suffering though. Hospitals were also having financial trouble. Baylor Hospital in Dallas, Texas was one such hospital and had a mounting debt. They also had a new and quite innovative administrator, Justin Kimball. Kimball had come to the hospital from the Dallas public school system and decided to approach his former co-workers with an offer. He proposed that any teacher who agreed to a donation of fifty cents per month would be guaranteed coverage for a hospital stay of up to 20 days so long as a minimum of three quarters of the teachers agreed to join. Kimball had no problem recruiting teachers to join in his plan and the first health insurance plan was born. (Cohn. 2008)<br /></span></p><p><span style="font-family:Times New Roman;">The original intent of health insurance plans was simple, to help people be able to seek medical treatment without going broke and assist the hospitals being viable and able to stay open and available to care for people when they got sick. Everyone involved benefited it seems. What happened to change insurance from a mutually beneficial arrangement then, and why did it happen?<br /></span></p><p><span style="font-family:Times New Roman;">By the early 1980s most American families were covered by employer sponsored health insurance plans and the benefits had become more comprehensive in the extended years of prosperity following the end of World War 2. As the benefits expanded they grew to include wellness and preventative screenings and the premiums had grown to reflect the expanded role insurance was playing in healthcare. (Cohn. 2008) Given the sustained prosperity over the past several decades why would either the employers or beneficiaries mind an increase in cost given that there was also a continued growth in income? During the '80s though the U.S. economy stalled and manufacturing jobs began to disappear. Businesses began to look for ways to cut costs- one of those costs being how much they spent on healthcare coverage. (BNet. 2009.)<br /></span></p><p><span style="font-family:Times New Roman;">By the 1990s the majority of companies seeing economic success were companies like Wal-Mart which had reduced their employee benefits to the bare bones and enacted policies that limited access to what benefits they did offer. Sometimes these limits were so severe as to require an employee be a full time employee of a company for a period of up to two years before qualifying for medical coverage! (BNET. 2009) Despite having a job my entire adult life I never had insurance coverage from 1991-2000 so can remember these policies all too well.<br /></span></p><p><span style="font-family:Times New Roman;">Companies, such as General Motors, which were bound by agreements with their employees' union to provide health insurance for their workers paid a very high price which was usually passed on to their customers. For example in 1993 GM said, "health insurance for its' employees alone added more than seven hundred dollars to the price of every car and truck". By 2004 that number had grown to $1400.00 per vehicle. (Cohn. 2008) While these costs were being absorbed by businesses and consumers however health insurance was growing to a multibillion dollar industry with steep profits and a reputation for denying benefits to the people it was purporting to protect.<br /></span></p><p><span style="font-family:Times New Roman;">Insurance had changed. It had begun as just what its' name implies- insurance that people could get sick without going broke and insurance that hospitals could afford to operate and care for those same people. It had grown it would seem, to be in the business of insuring its own financial health rather than insuring people's physical health.<br /></span></p><p><span style="font-family:Times New Roman;">Today the increased cost of medical coverage has left millions of Americans without coverage and at risk. The risks for people, like myself, without coverage are many but topping the list would have to be increased risk of complications from illness coupled with financial ruin. The premiums for individual health coverage are high and unaffordable for many people- if they can find coverage at all. As we see on the evening news, millions are simply denied coverage due to having a preexisting illness or being seen as being at risk for developing a serious illness in the future.<br /></span></p><p><span style="font-family:Times New Roman;">As a lupus patient, I am one of the millions of Americans who are seen as "uninsurable" but at least in my case they can give me a reason. It doesn't make the lack of coverage any easier, nor do I think it's fair that I am denied coverage over a condition I had no control over developing. At least I know why they won't sell me a policy though. Millions are turned down simply because insurers think they could become sick later thus actually using the policy they are paying for. Among the reasons I have heard people being considered as "high risk" are age, income level, and family background along with their personal medical history.<br /></span></p><p><span style="font-family:Times New Roman;">Having an insurance policy doesn't guarantee anything though. Insurance companies routinely deny payment for medications and treatments. I spoke with a fellow patient in my rheumatologist's waiting room who was waiting to pick up paper work she needed to submit to her insurance company. We'll call her Mandy. Mandy has lupus with severe organ involvement and the Dr had recommended Cytoxan to try and slow the damage to her lungs and kidneys. Cytoxan is primarily a cancer drug though and its use in lupus patients is considered "off label". (Off label is a term used when a medicine is being used to treat a different condition than what it was developed and approved by the Federal drug Administration.) Most drugs currently used to treat lupus are "off label" (primarily chemotherapy drugs or anti-rejection medications) but are used because they have proven beneficial in lupus for many of the same reasons they are beneficial in treating a disease such as cancer or helping to prevent organ rejection, they suppress the immune system and in lupus (and all autoimmune diseases) by suppressing the immune system they slow the progression of and damage from the disease. Well, Mandy's insurance company had denied coverage for the Cytoxan because they said it was experimental despite having been used successfully in thousands of patients to treat lupus. She and the doctor had been fighting with the insurance company to approve the treatment for six months and had yet to succeed. (personal communication. October 2009) Cytoxan is an expensive course of treatment to be sure, but surely less costly than what further damage to a person's kidneys or lungs would seem.<br /></span></p><p><span style="font-family:Times New Roman;">In addition to speaking with Mandy informally while we were waiting at the doctor's office I also conducted two more formal surveys over the past few weeks, one of patients in my online lupus support group and in an online support group for fibromyalgia and the second of healthcare providers including two doctors here in Louisville, a nurse practitioner, and a pharmacist in Lexington, KY. I asked both groups what they see as the biggest obstacle in the U.S. healthcare system. Everyone agreed that it was the insurance companies. Patients said they have had to appeal decisions to deny payment for hospital stays and tests ordered by their doctors as well as the myriad of paperwork required to get approval for scheduled procedures recommended by their doctor or nurse practitioner (ARNP). Providers said they spend countless hours that should be spent caring for their patients dealing with an archaic amount of paperwork required to both receive payment for their work as well as to convince an insurance company of what treatment is best for their patient. One doctor said " the red tape involved and stonewalling by the insurance companies in receiving approval for newer, more effective treatments to help my patients often causes more stress for my patients and a higher long term cost because delay in treatment often leads to a longer and more complicated recovery". Again, it seems to me as if it would be more cost effective to approve more effective treatments and do so faster rather than prolonging the illness and thus requiring a longer (and often costlier) course of treatment. (personal communication. October 22, 2009)<br /></span></p><p><span style="font-family:Times New Roman;">Patients other major concerns with our healthcare system were fear of losing access to treatment and fear of not being able to afford getting sick. The group included patients with private or employer sponsored insurance, patients with government sponsored care (Medicare/Medicaid), and patients with no coverage. The patients without coverage admitted to going longer than recommended between visits to the doctor, putting off lab tests, and either not following their treatment plan or requesting a less expensive treatment even though it could be less effective (I have done this myself as well). The patients with insurance were a bit better about following their doctor's orders but feared what would happen if they lost coverage and both sets of patients were afraid of what would happen if they were to have a serious injury or complication as most insurance plans have high deductibles, maximum allowed benefits, or both. (personal communication. October 22, 2009) In addition to being sick they feared they'd also be bankrupt, the very thing that was behind the beginning of modern health insurance.<br /></span></p><p><span style="font-family:Times New Roman;">I asked providers what they would recommend if they were asked by Congress or President Obama to consult on healthcare reform. There were two answers that really stood out to me. The first was the subject of tort reform and malpractice laws. All agreed that there need to be protections and limits passed on malpractice lawsuits. They said that fraudulent malpractice suits cost both them and their patients more because of the rising malpractice insurance rates and all agreed that even were it not required by law they would still maintain malpractice insurance to protect themselves and their families. (personal communication. October 22, 2009)<br /></span></p><p><span style="font-family:Times New Roman;">I interviewed Dr Tad Seifert, a neurologist here in Louisville who pointed out that the tort reform laws in Texas has greatly reduced the number of frivolous lawsuits while still allowing the legitimate cases to be heard and in doing so has brought down the cost of malpractice insurance and increased the number of healthcare providers per capita in the state. The other thing I heard from them was a recommendation to expanding the qualifications for Medicaid. Specifically one doctor said he supported in raising the allowable income for families and individuals to allow more people to qualify for Medicaid. According to the information he provided currently a family of four is only eligible if they have less than $21,000.00 per year in income. Dr Seifert recommended raising that to $35,000 as well as saying he would support expanding the Medicaid system to allow uninsured Americans with chronic illnesses to be included even if they aren't disabled and even if they are single with no children. (personal communication. October 22, 2009). I agree with this as it would expand coverage and the current limits on both income and disability status seem to encourage people not to work. For example, because I am single and want to do basic things like go to school and have a job for as long as I am physically able I don't qualify for any type of medical assistance but under his idea I would be able to qualify for Medicaid without also having to be on disability (everyone who is on state or federal disability is automatically covered by Medicaid or Medicare). I would no longer be punished for wanting to be as responsible and productive a citizen of my community as I am capable of being.<br /></span></p><p><span style="font-family:Times New Roman;">The U.S. is the only large, industrialized nation in the world that does not guarantee all citizens access to medical care. Canada has found a way to do so, as have Britain and France. Even Cuba has found a way to do it. Why then can't (or won't) the U.S. do the same? Do we value corporate profits above the health of our citizens?<br /></span></p><p><br /><span style="font-family:Times New Roman;"><strong>Bibliography</strong><br /></span><span style="font-family:Times New Roman;">BNET. (2009) The Rising Cost of Healthcare: Strategic and Societal Consideration For Employers. Retrieved from <a href="http://findarticles.com/p/articles/mi_m3495/is_9_49/ai_n6206615/">http://findarticles.com/p/articles/mi_m3495/is_9_49/ai_n6206615/</a> </span></p><p><span style="font-family:Times New Roman;">Cohn, J. (2007) <em>Sick</em>. (2<sup>nd</sup> ed). New York. Harper Collins<br /></span><span style="font-family:Times New Roman;"></span></p><p><span style="font-family:Times New Roman;">Organizing For America. (2009) The Obama Plan. Retrieved from http://www.barackobama.com/issues/healthcare/<br /></p></span><p style="MARGIN-LEFT: 36pt"><br /></p><p style="MARGIN-LEFT: 36pt"><br /></p><p><span style="font-family:Times New Roman;"><br /></span></p></span>Michellehttp://www.blogger.com/profile/12101325070371072328noreply@blogger.com0tag:blogger.com,1999:blog-4364307965283349155.post-40404835929729280332009-11-22T00:45:00.000-05:002009-11-22T01:08:40.846-05:00Interview With Lu Anne Novello of HGS<span style="color:#330033;"><strong>As part of my coursework this semester we were asked to research a topic of our choice and write an informative and argumentative/persuasive paper on the topic as the main part of our final assignment for our writing class. As a lupus patient and someone who has been a patient in clinical trials of new medications and treatments for lupus and migraines as well as a pharmacology major I chose pharmaceutical research for my topic. I intend to explain the basics of how the research process works and argue for why there needs to be improved funding for researching treatments for diseases such as lupus, a disease that has not had a new treatment aproved in over 50 years despite affecting more people than MS or AIDS.</strong></span><br /><span style="color:#330033;"><strong></strong></span><br /><span style="color:#330033;"><strong>After some preliminary/background reading on the topic, I contacted people working in the pharmaceutical research industry. The first Interview I am publishing was conducted by email and is with Lu Anne Novello Phd who is the Director of Clinical Operations for Human Genome Sciences, the research group responsible for developing BenLysta. Benlysta is the first treatment designed for lupus to success fully complete phase3 clinical trials in 5o years and will be submitted to the FDA for aproval in the first half of 2010.</strong></span><br /><span style="color:#6633ff;"></span><br /><span style="color:#6633ff;">How long have you worked in pharmaceutical research?</span><span style="color:#000000;"> I graduated from University of Connecticut School of Pharmacy in '82 . I had been lucky enough to have two internships in industry while I was in school and one of them was in clinical research. I loved it and I knew right then that I didn't want to work in a hospital or retail pharmacy. I went straight from school to a job in industry.....so I guess that makes it over 27 years now! </span><br /><span style="color:#6633ff;"></span><br /><span style="color:#6633ff;">What is the most rewarding part of your job? </span>Being part of a team which brings an important new drug successfully through the research, development and regulatory approval process in the most rewarding part of my job When I hear first hand that a drug I helped to develop has made a difference in someone’s life it is a great feeling.<br /><br /><span style="color:#6633ff;">The most challenging? </span>The most challenging part of the job is how long it takes to bring a new drug from the discovery stage to the point of being available to patients. The number of drugs that fail along the way is far greater than the number which are eventually approved. You may work on a product for years only to find it fails in the later stages of testing.<br /><br /><span style="color:#6666cc;">How are research topics (drugs or diseases) chosen? </span>Drug or biologics can be specifically engineered based on a model or an existing protein and then tested on a specific target. Or a compound could theoretically have more than one therapeutic target. In that instance preclinical studies (work in tissue or animal models) are conducted to help define what indications may have the greatest chance for success in humans. The identified disease areas are also evaluated to determine medical need. The following are considered: how many patients have the disease, how many other products are currently on the market and might your drug have a benefit (greater safety or better efficacy) than what is currently available. Often multiple indications for a product are pursued in parallel. The first one that completes the required testing will be submitted to the regulatory agencies as the initial NDA (New Drug Application) or BLA (Biologic License Application). Other indications are then submitted later in a supplemental filings.<br /><br /><span style="color:#6633ff;">Who decides what to fund and who actually plays a bigger role in funding, the government or the pharmaceutical companies?</span> Typically pharmaceutical/biotech companies make the decisions and fund their own research. In some special instances drug are developed in conjunction with the government and the government will fund the project. This may happen when there is a need for a drug that may not be commercially viable. An example is a drug to protect against a biological attack such as anthrax.<span style="color:#6633ff;"></span><br /><span style="color:#6633ff;"></span><br /><span style="color:#6633ff;"> What is the process in developing a new drug and getting the drug to a stage where it's ready for trials in humans?</span> New drugs and biologics are subjected to preclinical testing first. This is where you get the first indication of a drugs potency and activity. A drug can be tested against certain cell lines and tissues in a dish to see if the predicted activity is observed. From there the compound is usually tested in rodents to determine what dose is safe and if the predicted activity is maintained. Often an animal model representative of a certain disease state is used to better understand what effect might be seen in humans. If the drug is determined to be safe and have the predicted activity in rodent studies, the compound will next be tested in primates. Once again different doses will be evaluated for safety and if possible, a determination of potential efficacy. If preclinical studies done in primates are successful the drug is ready to test in humans.<br /><br /><span style="color:#6633ff;">How would you explain the difference in phase1, 2, or 3 trials to somebody who had never participated in a clinical trial?</span> Phase 1 is the first time the drug is tested in people. Phase 1 trials are usually conducted in healthy volunteers that do not have the disease which the drug is intended to treat. In Phase 1 trials the focus is on safety (what side effects does the drug produce and pharmacokinetics (after the drug is administered what levels does it reach in the subject’s blood. Based on the preclinical studies different doses (lower and higher) are evaluated. If the drug has an acceptable profile in Phase 1 studies, the next step (Phase 2) is to evaluate the safety of the drug in patients with the target indication. Efficacy of the drug to treat the indication is also evaluated in Phase 2. Patients enrolled in the trial will be divided into groups and treated with either the investigational drug or a placebo/current standard of care. Phase 2 trials are smaller studies. Large numbers of patients will not be exposed to an investigational drug until safety and efficacy have been shown in a small number of patients. Because of this, Phase 2 studies are “underpowered” which means there is a statistical risk of arriving at the wrong answer at the end of the trial. The drug may actually be effective, but due to the small number of patients tested the effect may not be seen in a phase 2 trial. Or the drug may appear to be effective and in reality it may not be statistically different than placebo or the current standard of care. Any significant safety concerns seen in a phase 2 trial may limit the potential for a drug to go on to Phase 3 testing. The safety risk must be weighted against the medical benefit of the drug to the patient. In Phase 3 trials large numbers of patients will be treated with the investigational drug. As in Phase 2 patients enrolled in the trial will be divided into groups and treated with either the investigational drug or a placebo/current standard of care. Usually two Phase 3 trials must be conducted with the drug and both trials should have similar results for efficacy and safety. If both studies show the drug is effective and the safety profile is acceptable, a licensing application is prepared and filed with regulatory agencies (like the FDA) for review. The regulatory agencies review the data generated through all phase of the drug’s development and if they agree the drug can be cleared and made available to patients<br /><br /><span style="color:#6633ff;">What do you see as the most important thing that can be done to help increase the development of new, safer drug therapies for chronic illness?</span> A balance must be maintained between the regulatory process necessary to protect the health and welfare of patients and the development path for new medical therapies. Clear communication between regulators and industry is needed to avoid costly (both time and money) diversions. Regulatory agencies must be adequately staffed to insure complete and timely review of data submitted by industry. Government and Industry must work together to achieve cost efficient solutions which move development forward while maintaining the responsibility of protecting human life.Michellehttp://www.blogger.com/profile/12101325070371072328noreply@blogger.com0