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…