Home Stretch!

The end of the semester is finally here!  The last day of classes was yesterday and now the only thing standing between me and nirvana are my three finals!  This semester took about five years off of my life – three months of being a big ball of stress can take its toll, thankfully I didn’t reach complete burnout level (but I think Ed would beg to differ)!  The thought of having the “normal” routine of going to work, going to the gym and having a social life are so exciting to me and I’m sooo close! 

I have so many things I want to do in the month I have off, I hope I’m able to get it all in!  I’m looking forward to having a social life and catching up with my friends (who have had many exciting things happening in their lives that I’ve missed out on), spending time with my family over the holidays and of course spending time with Ed that doesn’t involve school!  I cannot believe we will celebrate two years together in January – where does the time go?  It may not seem like a long time but for those that know me…  it’s a pretty big deal J We have lots of stuff planned that we’ve sort of had to put off because of school so we are both looking forward to having a little fun!

On the health front, things are going pretty well.  The weather here in Wisconsin has been holding up pretty well so that has been a big plus for me.  While I’m enjoying the milder temperatures, I must admit I’m a bit sad that there will be no snow for Christmas.  My lab work came back last week and while it wasn’t great, it wasn’t horrible either.  My white count was lower (as always) than my usual low so they are monitoring that.  My doctor thinks that is stress related so once school is over I’m hoping those levels will go up to what my “normal” is.  This is also contributing to my fatigue but hey, I love my naptime J  The fatigue has been the worse part so far, especially with school.  It has been difficult to stay motivated to study but I’ve been making sure I don’t ignore it and just rest when needed.  My numbness has subsided for the time being (YAY!) but I do notice more persistent joint and muscle pain.  My tailbone pain is still there and pretty persistent but there seems to be no answer for that so I’m just adjusting.  I am also in the process of beginning a new medication to help level off my hormones.  It seems my body is producing too much progesterone so that has been causing quite a few problems for me over the last few months.  I was happy to have an answer for my symptoms and I’m hoping that this new pill will help my body regulate itself so that I can start feeling like myself again.  My doctor isn’t quite sure how or why this happened so he will also be monitoring it and making my other doctors aware. 

On a better note, I have been managing to make it to the gym just about everyday for a whole four weeks!!  AMAZING!  I’ve been on this big running kick as one of my resolutions this year is to participate in more runs.  I’ve managed to run a whole 5K, which is such a tremendous accomplishment for me.  It takes me about 33 minutes but I hope to better that time eventually.  Ed and I are going to be participating in a 5K on New Year’s Eve day (figured that was a good way to start off the new year J) so that kind of helped to motivate me (well that AND the free bottle of champagne)!  Usually I need a nap before I go to have enough energy to get through but like I said, I love my naps. 

On another note, I’m SUPER excited for next week Wednesday, (December 21) as I will be at the Barnes & Noble at Mayfair Mall helping the Lupus Foundation of America - Wisconsin Chapter wrap gifts!  So if your like me and have left everything for the last minute, let us help you wrap your gifts!  I will be there from 6pm-8pm so stop by to say hi and show your support! 

For now, I think that’s a wrap (haha).  Sorry this post was all over the place, it’s hard to catch up on life when over a month has passed!  I think I got all of the major stuff but you can bet that over break I will be more consistent with my posts – lucky you J

Till next time…

Tis' the Season

Okay I know that last time I posted I promised that I would post on a more regular basis.  Unfortunately, life happens and while I try my hardest to keep up with my entries, it sometimes just isn’t feasible.  But enough about that…

I sit before you wrapped in blankets, doped up on Nyquil, ibuprofen & reek of Vick’s VapoRub & Halls cough drops.  The good news is that I have managed to sweat off my fever not once but twice today and I’m hoping the worst of it is over.  I’ve managed to go through close to a box of Kleenex myself - there is nothing more frustrating than blowing your nose and nothing comes out.  Although not being able to breathe through your nose can be incredibly irritating too, especially when trying to eat!  I know, I know, tis’ the season.  The one downside it seems is that I am more susceptible to germs and it seems to hit me a bit harder and stay with me a bit longer - Gotta love a low white count :) Things could be way worse I know I just can’t allow myself to slow down, especially now!

On the school front I am approaching the final stretch of the semester.  So far the only class giving me grief is Physics.  I am beginning to feel like it is taking over my life – its all I do it seems.  My other classes are going well so that makes things a bit more bearable.  Next week is the start of my last round of exams before finals so I’m hoping to finish strong.  Another huge detail adding a major amount of stress to my life is the fact that I have begun my application for nursing school, which is due in January.  My fate will then be decided by March and if accepted, I would begin next fall.  It’s a pretty big deal as I have been working my butt off the last two years to get the grades to become a major contender.  UWM is an EXTREMELY competitive program and only 56 applicants are accepted out of a pool of over 160.  I definitely have my work cut out for me!  At this point in my life I have never wanted something so badly and I just feel like this is my only shot – there is no room for error… hence the added stress.    

On the health front, aside from my current situation, things have been alright.  My fatigue has prevailed the last few weeks and it has been difficult to stay awake past 8:30pm.  Quite the change of events from a few weeks ago when insomnia was my friend.  I have yet to schedule make my lab appointment to get my blood work checked – getting there has been a problem with my schedule. My tailbone pain is still pretty persistent and I’m starting to notice my numbness coming back in my arm & hands.   My neck pain seems to be bothering me more and gets agitated doing the day to day things such as brushing my hair or turning my head. The pain in the lumbar region of my back continues to be a pest BUT my muscle weakness hasn’t gotten any worse – so that’s good.  The blood work will show my muscle enzyme levels and let us know how I need to be treating the myositis at this point; it will also show if my immune system is turned on and my Lupus is active. 

Other than that, not too much has been going on.  Ed and I continued our tradition of going to Splatterhaus over Halloween weekend.  We went with our friends Brad & Stephanie and once again, it was terrifying!  These days, we are just gearing up for the end of the semester and getting ready for the holidays.  Can you believe that Thanksgiving is a couple weeks away?!?!  CRAZY!  

So there you have it – I know, I lead such an exciting life!  Fingers crossed that the next few weeks run smoothly and there are minimal hiccups.  As always, if you have feedback as it pertains to me, this blog, or Lupus in general, please post a comment. 

Till next time…

Playing Catch Up!

A huge apology for being absent for three weeks – in the blogosphere, that is an eternity!  To my faithful followers, I promise to try my best to post more regularly J  Trust me I would have much rather been posting to my blog than memorizing physics’ formulas & chemistry equations!  My semester is in full swing and can you believe it is already time for mid-terms?!?!  While I will be extremely happy to put this semester behind me (taking physics & chemistry in the same semester wasn’t the brightest idea), I find myself so overwhelmed, and I just wish things would slow down JUST a bit.  Although it has been endless days of studying, it has been worth it on the grade front.  So far I have managed to get a B on my Physics exam (which was no small feet) and an A+ on my Chemistry exam.  Coming up in a week, I’ll do it all over again with a Physics exam on Friday, Chemistry exam on the following Tuesday and my Medical Terminology midterm on Wednesday!  It seems to be never ending but I just keep telling myself it will all be worth it!  Ed’s semester has also been going well and he seems to be enjoying his classes.

I have managed to work some fun in though – I mean it’s not every day that three sports teams in Wisconsin (Packers, Brewers & Badgers) are on a roll in their prospective sports and making us fan’s proud!  While I have mostly been in “Beast Mode,” my blood will always run Green & Gold!  I will say that I’m hoping the Brewers can turn things around because right now things are not looking good for them reaching the World Series.  We’ve attended a couple games this season & I was able to attend the second NLDS game at Miller Park, unfortunately the Brewers were shellacked 12-3.  Again, hoping they can turn things around…  Ed & I have also seen a few of the new movies that have come to theaters.  We’ve seen The Lion King (not new but we LOVE Disney movies), The Ides of March and Reel Steel.  All were very good although I highly recommend Reel Steel!  Now that October is upon us we will be attending a haunted house at some point (not my idea…).  I am in the process of trying to find a pumpkin farm since we’d like to carve pumpkins this year – if anyone has any recommendations (in WI of course J) please let me know!

I also welcomed a new niece into the world this week!  Quinn Emery Hogan was born on Tuesday, October 11^th, 2011.  She entered the world at 9:31am weighing in at 7lbs 11oz & 20 inches long with a full head of dark hair.  Quinn joins big sister Shea who will be two in December – my brother will definitely have his hands full with two girls but he is just as happy as can be! 

Through all of this I have been managing my pain and discomfort pretty well.  I’m trying to get as much sleep as possible but it has been difficult getting a full night’s rest lately.  I have noticed that my Yoga practice has become more difficult and sometimes painful so that has been a bit discouraging - I have pain in my neck, shoulders, pelvis & hips.  I have also been experiencing discomfort in my middle back and tailbone area (AGAIN!) along with hot flashes, night sweats and some pretty terrible headaches.  I have started a symptom journal that I will be taking with me to my next appointment so that I don’t forget anything – although I’m not sure I’ll make it until February like this.  But I’m hoping its stress related (imagine that) and not the myositis getting worse. We’ll see once the semester is complete and things settle down (scratch that I forgot about the Holidays!!) if my symptoms get better. 

Overall, things have been going pretty well. I’ve had my good days and bad days (just like anyone else) and even though there seem to be more bad days than good lately, I’m just doing my best to take it day by day.  So that is the last three weeks in a nutshell (probably not everything) – I lead such a thrilling life I know!

Till next time I'm just singing this song…

Mark Your Calendars!!! Halee's Jubilee :)

One of my goals in beginning this blog was to meet new people – not just those living with lupus but anyone who has had some sort of experience with lupus whether it is through a family member, friends, co-workers, etc.  Social media has been a great medium for connecting with people and learning just how many people have been affected by lupus!  I have made many new friends both near and far who have invited me into their lives to talk, laugh, cry, & vent about the toll that this illness can take on our lives and those we love.  Most importantly, we discuss ways to help lupus get the attention it deserves!  These people have been such great listeners and so supportive when I feel so alone, going through my worst moments when I feel like nobody really gets it.  I’m so grateful to my new friends even though I haven’t met any of them face to face. 

I hope to change that very soon as I hope (trying to work around school) to attend a very special upcoming event in Mequon, WI.   The program Everyday Health (which appears on your local ABC affiliate Sunday mornings at 11am – watch the episodes here) will be filming a lupus segment at Libby Montana’s restaurant in Mequon, WI beginning at 5:00pm on Wednesday, September 21.  My friend Kim & her family will be hosting a fundraiser to coincide with this filming and her daughter, Halee is being interviewed to talk about what it’s like to live with lupus.  The event will include a carnival for little kids, volleyball tournament, & lupus bracelets for sale.  If you purchase a T-shirt for $15 you will also get a hot dog, chips & a soda.  You will also have an opportunity to meet Miss Wheelchair WI 2011 Kristin Larson - another amazing chick living with lupus with a secondary complication of Transverse Myelitis.  Through her passion for helping others, Kristin active volunteer and legislative advocate for the Lupus Foundation of America, writing letters of need to Congress to bring awareness and support of medical research for individuals living with the disabling illness Lupus.

I met Kim a few months ago through the Lupus Foundation of America – WI Chapter.  She reached out to me after reading my blog (it’s so nice to know its reaching people!) and shared with me how her daughter Halee has lupus.  As she shared Halee’s story, my heart went out to her as I can’t imagine how difficult it must be for a parent to watch their child go through this.  However, Halee isn’t sitting back and letting lupus run her life!  Today she is a thriving 15-year-old sophomore in high school that is feeling GREAT!  While she can longer play volleyball, she remains involved by managing the JV volleyball team and is a member of her school’s drama club.  When she’s feeling good (which Kim said is most of the time) she loves to hip hop dance!    

This event is so important because it is bringing major attention to lupus and putting it out there for everyone to see.  Halee & her family have done such a wonderful job in working to bring awareness & funding to lupus.  They have succeeded once again by helping to get the topic of lupus featured on this program.  I encourage you to attend if you can – heck you could even be on TV :)

Event Details
  
Halee’s Jubilee
Wednesday, September 21, 2011
Event begins at 5:00 pm

Libby Montana’s Bar

   5616 W Donges Bay Rd

   Mequon, WI

   (262) 242-2232

Back To School

It’s been a crazy couple of weeks.  So much has been going on so I apologize for the small novel that is to follow.   With the semester starting on Tuesday, we wanted to get in so many things before school took over our lives!  We used the long weekend to get stuff done around the apartment, stock up on supplies, groceries, see family & friends, enjoy quality time together & of course sleep in as much as possible J.  We attended the Walworth County Fair, saw Crazy, Stupid Love and The Debt (I would recommend both).  At the fair, we ended up adding to our family by winning another fish while playing the goldfish game.  Our newest member, Nito (short for incognito since he has camouflaged coloring) joins his brothers Flash (he’s lightening quick) and Bino (pronounced Beeno - short for Albino because he is white/transparent in color).  Nito is in his own bowl for the time being as he’s a bit to small for the aquarium yet…  We packed in so much it went by so quickly & before we knew it, it was Tuesday!

The Fall semester kicked off on Tuesday for both Ed and I.  Yes that’s right; both of us started school!  Ed is going back for his Master’s in Accounting and me, well, I’m still working toward my nursing degree.   I’m nervous as I will be applying to nursing school this fall to begin next year.  It’s always nerve racking because the program is so competitive with a lot of applicants and limited space.  I’ve worked very hard to maintain a high GPA in in addition to volunteering and writing a kick ass admissions essay.  So we’ll see – fingers crossed (and toes, legs or any other body part that can be crossed). 

After only two days, this semester has proven itself to be quite a challenge as I am taking Chemistry, Physics, Medical Terminology & Yoga.  Yes…  I’m taking Yoga!  So far it’s my favorite class and is definitely a great stress reliever from the others J  Since I have never taken a Yoga class, I didn’t know what to expect but after the first couple of classes, I have a feeling I’m going to really enjoy it.  I’m amazed at how difficult it was for me to sit still during the meditation part though.  Who knew?  The great thing about the practice is that it forces you to focus on yourself and really get in touch with your body & mind – which is something that I’m not very good at.  Ed is enjoying his classes as well which makes me very happy because going back to school can be a very intimidating experience (especially as you get older).  As we get further into the semester it is definitely going to get interesting as we juggle school, work, studying and finding time to spend with each other as well as family & friends.  We just keep telling ourselves that it is just temporary and look forward to when we are both in careers that we enjoy. 

The schedule change has been a definite adjustment for me as I’ve been asleep by 7:30pm the last few nights.  I’m hoping that its just temporary as there is no way that I will be able to be in bed that early (although its nice) once I start getting slammed with homework.  I guess I’ll just cross that bridge when I get to it.  I have been feeling alright (not horrible, but not great) so I’m just trying to take it easy and not doing anything that is going to make me feel worse or bring on a flare.  I’m still seeing my Physical Therapist twice a week and I seem to be improving with the treatments.  The tingling in my arms & hands has lessened over time, which has been such a relief as it made the easiest of tasks so difficult to complete before.  On the other hand, my upper back and neck discomfort are still there and seems to be worsening with the treatments so it seems to be a double-edge sword sometimes – relieve one thing but make something worse.  I try to remain optimistic that it will get better in time and I will be back to myself and doing the things I used to very soon!       

In other news… 

Can I say how absolutely thrilled I am that the NFL season kicks off tonight?!?!?  Well I am!  I’m thrilled to be spending my Thursday night watching my boys, the Green Bay Packers, take on the New Orleans Saints. I wait all year for this season and I’m so glad that the lock out is over and its going to happen!  My other boys, the Brewers, begin a four game series against the Philadelphia Phillies tonight at Miller Park - hoping they can win at least two!  Add in the Badgers awesome victory this past Saturday against UNLV and it’s a great time to be a Wisconsin sports fan!!!! 

All in all, life is good – busy, crazy mad but good!  Hope everyone has a great rest of the week and weekend!

Till next time… 

How Can I Help You??

I am always thrilled when I get sent articles that indicate more funding toward researching lupus.  With the information that is out there, it seems that lupus remains a very complex & complicated condition to treat.  The more people I meet & speak with it also becomes apparent that lupus seems to be diagnosed quicker (or misdiagnosed for that matter), more frequently and at a much younger age than when I first began learning about it. Any additional information or funding that can be used to help move toward proper diagnosis, better treatments or even a cure is still greatly needed.  Since there is no real definitive test, there are many people who suffer for years with symptoms before they are officially diagnosed.  Heck, there are even times in which I still believe I have been misdiagnosed but I have been assured by multiple doctors and specialists that I do, indeed, have lupus. 

So the big questions are how do you treat an illness that affects each person differently?  Or better yet, how do you develop a medication to treat the complex list of symptoms that lupus & other autoimmune illnesses present?  So far there is no simple answer or at least I have yet to find one.  We must continue to let our voices be heard so that lupus starts receiving the attention that it desperately needs & deserves.  I receive emails all of the time regarding the latest research being done or ways to become an advocate and be a voice for those with lupus.  There are a limited number of organizations out there devoted to lupus awareness & education BUT the list is growing.  There are many ways to get involved – click here for more info.

As a person living with lupus I cannot stress enough the importance of educating & learning about the effects of lupus – especially if you have been diagnosed!!!!  If I could shout one thing from the rooftops it would be – Don’t Settle & Ask Questions (actually I think that is two things…)!  You are paying good money to see doctors and specialists – ASK QUESTIONS if you are confused or want information – that is what you are paying them for!  Lupus is a very complex and confusing condition that affects no one person the same – find out all you can and utilize every resource possible.  Living with a chronic illness can be difficult but as hard as it is, don’t let it define you!  Easier said than done for most I know.  This is where I look to you for input – what types of information are you looking for?  How can I help you?  Please let me know!

Also, check out the new article I posted to my Motivating Stories section!  It's another great example of a person LIVING with lupus!

Till next time… 

A Vacation from My Vacation!

It was back to reality for both Ed & I today and let me say it was rough getting up when the alarm sounded at 5:30am!  As always, our mini-cation went way too quickly but we had a great time!  Our three days were jam packed with activities and didn’t have much down time except for sleeping!  I will probably need the rest of the week to recover!  We went on the Original Ducks tour, rode the Northern Railway train, mini golfed, went to Mount Olympus & Noah’s Ark.  In between we took in some night life and of course yummy food!  It was so nice to get away from the daily grind if only for a few days and be an out-of-towner J  Although I’m paying for it dearly now, it was well worth it!

We ended up coming back on Monday night instead of Tuesday morning because, frankly, we missed home and wanted to get a good night’s sleep in our own bed.  I have been experiencing extreme discomfort since my awful ride on the Hades rollercoaster on Sunday so I was eager to get back to the comforts of home.  It was then I realized that, although my PT didn’t say anything about not riding rollercoasters, it probably wasn’t the greatest idea given my current condition (for that information click here).  Let’s just say I probably won’t be riding rollercoasters again for quite sometime (which means we have to cancel our Great America trip over Labor Day weekend L).   I have been stiff with limited range of motion and pain shooting down my neck and arms since Sunday and I was so grateful that my PT could squeeze me in yesterday to get a treatment!  I’m feeling a bit better today but not very much.  Ed asked me this morning if I felt as awful as I looked – gee thanks! 

On Tuesday, I also had my long awaited appointment with my new Rheumy and I must say I’m thrilled that I can kick my other one to the curb.  We had a great conversation and she was very thorough with my history and asking me questions, etc.  I felt very comfortable with her and felt like she was taking me seriously.  Based on all my blood work results and other test results, she confirmed my Lupus diagnosis (shucks!) but wouldn’t change any of my treatments/medications that I’m currently on (hooray no more pills!).  She explained my results from my other blood work to me and said that nothing really concerned her at this point.   The only not so good thing she noted was my neck/spine problems associated with the TOS but she said she would leave that to my PT.   She ordered some additional blood work but I am confident that my levels will all be fine so that means I won’t have to see her until February!  All in all a great ending to a terrific mini-cation.

My other big news came before we left for our mini-cation.  Earlier this month I had submitted this blog for consideration to be posted on the The Lupus Magazine website.  The morning we left, I was contacted by the editor and told that it was going to be featured on the website!  Needless to say I was ecstatic and so happy!  Here is the link to my blog on the website - (5th one down). 

This means I’m just that much closer to creating more awareness as well as meeting people who share my mission of advocacy, education and research.  I’m thrilled to have more readers and make more friends along the way.  This has been quite the journey & experience so far and it can only get better.  Mostly, I so incredibly grateful for all of the wonderful feedback and support that I’ve gotten thus far – I wouldn’t be where I am today if not for you!

Till next time…

Am I the Only One???

I’m so mad!!!  Am I the only one that didn’t know that UV protective clothing existed???  With all the research I do, how could I now know???  Arg!  In preparation for my upcoming trip to Wisconsin Dells this weekend I was researching some information on the Internet when I came across these websites:

UV Protection, Coolibar, Solartex & Ecostinger

All four have UV protective clothing for babies, children & adults.  They have hats, swimsuits, clothing, even socks!!!  Sadly, it was too late for me to order anything and have it shipped by tomorrow L but I will definitely be ordering something in the future.  If you know of any other websites please let me know in the comment section below!

My one question is why do they not advertise this stuff like crazy?!?!?  Heck they would have a repeat customer in me and probably my whole family – which brings me back to my original question – am I the only one who didn’t know about this???  I know that I would love if they would have a store like this somewhere!  I’m a bit leery buying things off of the Internet simply because things fit so differently, I’d rather be able to try it on first and eliminate the hassle of returning it.  Although shopping without having to leave your house is pretty hassle-free too. 

As I mentioned above, Ed & I leave for Wisconsin Dells tomorrow morning our four-day mini-cation.  We have been looking forward to this trip all Summer – it will be our first together so it’s a pretty big deal J  In addition, neither of us has been on any type of vacation in years!  A few days away together will be good for the both of us and I’m looking forward to all of the fun activities we have planned.  We plan on going to Noah’s Ark Waterpark, Mt. Olympus, Pirate’s Cove (mini-golfing), going on a Ducks tour boat ride and trying out some train thing.  We plan on eating at Moosejaw Pizza and Paul Bunyan’s restaurant – we’re definitely packing it all in!  I’m a bit nervous about being outside all day but I’ve packed enough sun gear which I hope is going to do the job.  Ed has been very careful to schedule in rest and nap time for me which is very sweet of him J

The thing I’m looking forward to most is just getting away – I’ve needed it so badly.  This summer has been crazy busy and I feel like I’ve been going non-stop since May.  I’m running out of gas so this is just what the doctor ordered.  I’m hoping when I return I will be refreshed and ready to take on another semester at school. 

On another note, I began my Physical Therapy last week for my nerve issues.  The goal is to loosen up my muscles in my neck, chest and back so that they stop compressing my nerves.  The sessions so far have been mostly good – my PT Diana is awesome but some of the therapies have been painful and uncomfortable.  It’s a small price to pay and I will take that over surgery and more medication any day.  The whole process has been very eye opening in just how incredible the human body is.  As a nursing student, learning more about the workings of the human body continues to amaze, confuse & frustrate the heck out of me but I’m learning so much!  Next week is my BIG appointment (the one I’ve been waiting to go to for three months!) with my new Rheumy.  I have so many questions and issues to go over with her so I’m nervous, anxious and a bit relieved for Tuesday.  We will be coming from the Dells so it will be an interesting appointment (maybe)…

All in all, things with me health wise have been pretty uneventful.  I haven’t been having any new symptoms (Wahoo!) and I’ve been adjusting to the insomnia, nerve pain, joint pain and fatigue the best way I know how – some days are good, some days are bad but my whole “Day by Day” motto seems to be going well. I’ve been really concentrating hard on “picking my battles” in terms of allowing things to stress me out.  I’ve been trying to adapt a “go with the flow” mentality - which for those of you who know me will laugh - it is a daily struggle but I’m getting better at it.    I came across the following post in one of the Lupus groups I’m in and it’s very indicative of my personal journey of as late (Thanks Carrie!)

I might not be someone's first choice, but I am a great choice. I may not be rich but I am valuable. I don't pretend to be someone I'm not, because I'm good at being me. I might not be proud of some of the things I've done in the past, but I am proud of who I am today. I may not be perfect but I don't need to be. Take me as I am, or watch me as I walk away!!!

Till next time…

Knowledge is Power

One of my main goals in starting this blog was to be a valuable source of information not only for my fellow lupies but for those who care for them as well as the public in general.  The more I learn about my illness, the more I am compelled to research the work being done towards not just finding a cure but also what is being done to create awareness, educate people, improve treatments and create a better quality of life for those living with lupus. 

Let’s be honest, most people don’t pay attention to things that don’t directly affect them. So unless you yourself or someone very close to you is affected, most won’t get informed or take action.  This is where we need to start - I believe you have to educate people to know who’s at risk, symptoms to look for, what questions to ask the doctor, know where to look for reliable resources of information, affects that lupus has on the body & mind, learning coping mechanisms, etc.  Since my diagnosis in 2007, I have done all I can to get informed not only about the illness itself but learning about available treatments, how lupus affects each individual differently, current research, ways to get involved, best doctors and creating awareness.  I am a firm believer that knowledge is power and I also believe that is where a lot of people fall short.  We are our own best advocate and supporter!  Don’t just get one opinion, get many!  Don’t settle for an okay doctor, you’re worth the best!  We have a voice, let it be heard!

I’ve visited many websites, blogs, subscribed to many magazines, and joined many groups, all with the sole purpose of becoming both involved and informed.  I’ve signed up for lupus Google alerts that send me information daily basis on anything lupus related so I feel like I’m always in the loop.  This has helped me to find valuable information that I probably would never have come across.  That is why I value the new relationships I have made with fellow lupies because we are each other’s best resource for information & support.  When I began this blog I wanted to be share my experiences but I also wanted to use my blog as a platform for motivation, inspiration, and valuable information.  Each time I find something I believe will be of value I will post it to my blog.  Again I encourage you to send me information that you find important. 

In keeping with that, I invite you to visit The Lupus Magazine.  This website is an AMAZING resource and you wanna know the best part???  It’s written solely by people with lupus!   It has the latest news & events, hottest websites, blogs and organizations out there.  I encourage everyone to check it out!  The writers are great and are amazing at conveying what it’s like to live with lupus. 

In closing, I encourage you all to become your own advocate and educate yourself & others.  Knowledge is so important for increasing awareness & bringing attention to lupus.  It is my hope that very soon, lupus will be “on the map” along with other chronic illnesses and receive the attention, funding and support that it not only needs, but deserves.

Till next time…  

Just One of Those Days

**WARNING – VENT SESSION!**

Just thought I would give warning as this post is going to be so random and all over the place – if anything you may get a good laugh at how ridiculous I will probably sound…

I think months of frustration & being overwhelmed have finally taken their toll and I’m just ready to explode!  It’s just one of those days when the smallest thing can happen, leading to an uproar of emotions & reactions.  I feel like for so long I have tried to be upbeat and positive when, in reality, I’m just breaking down.  Lately, I find it more exhausting to be fake than to be the real me (which involves being depressed).  I find I would like to go through more days just being left alone to be how I want to be – not wanting to get out of bed and be allowed to just have a bad day.  Each morning I “awake” (insomnia is a bitch) to mostly pain and discomfort that usually progresses throughout the day.  I step on a scale that seems to ONLY move upwards even though I just killed myself at the gym for an hour the night before in hopes of scaling my weight back.  I take pills that are supposed to bring me relief, follow the doctor’s orders and for what??? 

NOTHING!!! 

In making every effort to get back to the old me, I have come to the stark realization that that can never be.  If any of you have ever come to this realization (I mean really) you can empathize with the profound sadness this can bring.  I understand that people’s lives change everyday – they are given news that can forever change their life.  Like I’ve mentioned before, small changes and adjustments have been made to deal with living with a chronic illness but gosh darn it – it SUCKS, it just really SUCKS!  Many people won’t get it and may just see me as a complainer or feeling sorry for myself and to them I extend my all important finger at them.  I’d gladly trade places with them if they think they could handle it soooo much better!  I’d love to know how they deal with joint pain so bad I’d rather sever my limb because that would bring me more relief, or stepping outside in the sun and feeling like I’m being stabbed simultaneously with millions of needles, having an intolerance to cold or slowly losing your ability to do or enjoy the things you use to.  And while I’m thankful that I don’t have any organ involvement (yet), dealing with these things on a daily basis can be so frustrating it makes me want to scream.

Life is different, I get it.  Its never going to be the same and that hurts.  Getting poked, prodded, countless test, procedures and office visits – that’s my life moving forward.  I’m grateful that the outlook for my illness has improved greatly but dammit I just want ONE day – one day of no pain, a restful night’s sleep, the ability to eat what ever I wanted, or the ability to enjoy the outdoors without worrying about photosensitivity. 

So there you have it…  if you made it this far – thank you for letting me vent!  I hope to not make a habit of it. 

On a more positive note, my next entry is a work in progress as I’m researching a great new resource for lupies written by lupies!  Check back soon!

Till next time…

Awareness Matters!

In a nationwide poll of 1,000 adults conducted for the Lupus Foundation of America (LFA), 38% said they are somewhat or very familiar with lupus, while 39% have only heard of the name of the disease and 22% have never heard of lupus (Lupus Foundation of America, 2011).  Before being diagnosed in 2007, I was among the 22% of people who had never heard of lupus.  However, that has changed now and I have made it a priority to learn as much as I possibly can about this illness.  The diagnosis of lupus seems to be increasing, yet there still isn’t much information out there.  A few statistics to share with you…

»    Lupus is more prevalent than AIDS, sickle-cell anemia, cerebral palsy, multiple sclerosis and cystic fibrosis combined. Lupus affects 1 out of every 185 Americans.

»    It is estimated that 1.5 million Americans, and at least five million people worldwide, have a form of lupus.

»    90 percent of individuals diagnosed with the disease are women.  Most people will develop lupus between the ages of 15-44, although lupus can strike men and women of all ages.

»    Systemic lupus accounts for approximately 70 percent of all cases of lupus. In approximately half of these cases, a major organ, such as the heart, lungs, kidneys or brain, will be affected.

»    Cutaneous lupus (affecting only the skin) accounts for approximately 10 percent of all lupus cases. 

»    Drug-induced lupus accounts for about 10 percent of all lupus cases and is caused by high doses of certain medications.  The symptoms of drug-induced lupus are similar to systemic lupus; however, symptoms usually subside when the medications are discontinued.

»    Lupus is two to three times more prevalent among women of color -- African Americans, Hispanics/Latinos, Asians, Native Americans, Alaska Natives, Native Hawaiians and other Pacific Islanders -- than among Caucasian women.  

Economic Impact

»    A study reported in October 2008 found that the average annual direct health care cost of patients with lupus was $12,643.  (Imagine if you didn’t have insurance).

»    The mean annual productivity costs (lost hours of productive work) for participants of employment age (between the ages of 18 and 65) was $8,659.

»    One in four patients receive their health care through a government-sponsored program, such as Medicare or Medicaid.

»    One in three have been temporarily disabled by the disease, and one in four currently receive disability payments.

(Source: Lupus Foundation of America website 2011)

However, those who live with it have a constant reminder of the impact it can have both personally & professionally.   In a survey conducted by LFA, survey participants cited pain (65%), lifestyle changes (61%), and emotional problems associated with lupus (50%) as the most difficult factors for coping with lupus.  But things are on the up & up in my opinion.  Since signing up for Google Alerts for articles related to lupus, my inbox is filled on a daily basis with articles regarding the latest trials, medications, personal stories and new information regarding this condition and all that is being done to increase awareness & raise money to help find a cure.  There is even a drastic difference in the amount of information I can find now as opposed to 2007 – it’s a step in the right direction but it is still not enough!   

It seems lately autoimmune illnesses in general are all over the news!  With these celebrities publicly sharing their experiences as well as this article (that made me adore Rob Thomas, lead singer of Matchbox 20, even more) – help to shine light on those individuals living with chronic illness as well as how it can affect their families & friendships.   Even those who are in remission or live with a mild form of lupus still struggle to adjust to having a chronic illness & the impact that [even a mild form] can have on their lives. 

Yesterday when I was in Madison visiting my friend Megan, we were driving & catching up when she asked me a simple question that seemed so difficult to answer…  “So what exactly are your symptoms on a daily basis?”  I struggled to find words because unfortunately each day is different – that’s why it’s so difficult for people to understand.  I may go to bed feeling great and wake up feeling like complete and utter s#%* (excuse my language).  There are days where it’s difficult to get out of bed or where making a simple phone call can seem like the biggest task.  There are times where my body feels like it’s on fire & the only relief I can find is lying down and not moving.  I struggle with extreme fatigue, numbness in my legs, arms, feet & hands, headaches, joint pain, insomnia, & muscle spasms to name a few.

As you can imagine, this could put a damper in one’s social life.  That has been one of the biggest adjustments for me.  I’ve been coming to terms with not being able to do as much as I used to.  I still can go out but if I’m out late, I pay for it dearly the next day - but it’s my choice.  Sometimes I want to forget and let loose but the more my body fails me, the more I realize it’s just not worth it.  It makes me sad when I see & hear all the fun things my friends or family have done and I feel like I’m missing out.  Don’t get me wrong, I still do some pretty amazing things but it’s just different now.  I feel like I’ve lost a bit of my spunk & some of who I am.  So whether or not I answered her question, I don’t know but trying to make people understand has definitely been a challenge, especially since I don’t look sick.

I do definitely take advantage of the days where I have energy and my pain & discomfort are manageable.  My disposition isn’t always sunny but I try to make everyday as good as it can possibly be – which I think is true for most people.  The thing that I try to remind myself is that it’s life – at any point it can change, for anyone at anytime – I’d much rather live it the best way I know how then just let it pass me by. 

In looking back, I realize this post jumped all over the place but the thing I wanted to get across is just how important it is to increase awareness about lupus and to show you just how prevalent it is and the impact it can have on an individual’s life.  If you made it here, thanks for reading!

Till next time…