A Bit About Me...

I think I may have done this backwards by explaining what is happening to me without telling you anything about me.  So this entry will be devoted to telling you all a bit about me (not much to tell though, I’m pretty boring)… I was born during a blizzard on February 3, 1979…  Hahaha, just kidding.  I mean my birthday really is February 3^rd and there really was a blizzard but I’m certainly not going to bore you with my life story; just some of it J.

Where to start though… huh… well here comes the abridged version…

I pretty much grew up in Franklin, WI.  My family moved there when I was in the 5^th grade.  I finished out the year at my old school then started 6^th grade at Forest Park, then Franklin High School, ah the Sabers – good times, great memories.  Initially I attended Carroll College for two years and just didn’t feel like I was getting the true college experience so I transferred to UW-LaCrosse and graduated in 2002 with a BA in Communications with and emphasis in Public Relations & Telecommunications.  That is where I had some of the best times of my life as well as met some of the greatest people who are still very near and dear to me today. 

My first job out of college was at M&I Bank as an Administrative Assistant in the Accounting department.  For those that know me, you know how much of a “not fit” that position was but it was a job and a way for me to get my foot in the door.  However, after two years and no movement I decided to leave and follow my heart… and a boy… (of course) to Iowa.  Again for those of you that know me, this turned out to be a very short-lived adventure and put into the “not the best decision” category.  It was a very hard time in my life and I was pretty heartbroken for quite some time but I learned a great deal about myself through the whole experience.  Looking back, as hard as it was for me, I wouldn’t change anything because that experience alone started me on the path I’m traveling today.

In November 2004, I landed a new job and was getting back on my feet.  I worked as a Marketing Assistant for a real estate development company.  This was a great find for me since I was able to utilize my degree and creativity.  I remained in that position until 2008 when I decided that I was going to go back to school.  I also met some fantastic people here that I continue to keep in contact with and a few are still close friends.  However, once I left here, I of course, changed my mind about school because I came across a new position that I believed would be a terrific opportunity for me.  So instead of enrolling in school, I decided to take a position in Deerfield, IL as a Marketing Specialist for a Disease Management/Wellness company.  Unfortunately, after being there only a year the stress of the job itself, the horrible commute and my desire to pursue a career in nursing all persuaded me to resign.

[If you’ve gotten this far, kudos to you!  Either I’m a terrific storyteller (not likely) or you’re just being polite, which I appreciate J  I’m almost done, pinkie swear J]

So that brings me to these days…  I am currently pursuing my nursing degree at UW-Milwaukee and have a tentative graduation date of December 2013.  I know – YIKES – but so far it has gone by pretty quickly.  My end goal is to become a C.R.N.A (Certified Registered Nurse Anesthetist).  However, it requires working as an RN for two years even before I can apply for the program which is an additional three years of school.  Right now, I’m just going to concentrate on getting my RN and see what happens.  This has been one of the greatest decisions I have EVER made and my only regret is that I didn’t do it sooner.  Even though school pretty much dominates my life, I know in the end it will be worth it and those close to me understand that and support me every step of the way!

Speaking of those closest to me, I can’t leave without introducing my phenomenal support system.  My parents, Dennis & Patty, have been married for 35 years. I have always been a daddy’s girl but my mom is pretty great too!  I’m the youngest child of three – I have an older brother and sister.  Tim, my brother, is married and has one daughter, Shea Elizabeth, with another little girl on the way.  Both him and his wife, Dani are teachers and they live in Oak Creek.  My sister, Rachel is also married and has a daughter, Jayden and a son, Tyler.  Her and her husband, Brad, also live in Oak Creek. 

Finally, there is my boyfriend Edward (or as I call him Ed J).  We have been together for 18 months and going strong.  He has been the greatest support that I could have ever hoped for.  He has been so understanding and encouraging through everything that has happened and let me tell you, he has put up with A LOT from me.  I have been so blessed to have him in my life. 

Along with them and other family and friends, I am the luckiest girl EVER!

So guess what… YOU MADE IT TO THE END!!!  Looking back this kind of goes on and on but hopefully it will give you more insight into me.

Until next time…

What It All Means

Since there isn’t much information out there about lupus (which in some small way I hope to change) I get asked a lot about what it all entails.  First off, like many other illnesses, it doesn’t affect two people the same way.  Some, like me, have milder forms while others have more severe, life-threatening forms.  The scary part is a person can go from mild to severe very quickly with no warning at all.  Those of you who have lupus know what I am talking about.  Day to day life can be a rollercoaster ride at times – going from feeling great to awful and back to a bit better than awful all within a span of 24 hours.  It can be frustrating not only for a person with lupus but for their families as well.  As any person with lupus will tell you, stress is the ultimate trigger for a flare up.  I don’t know how many times my doctor has told me that I need to learn how to control my stress levels.  Typically I give him the head nod and agree but really, it’s almost impossible to do!  Stress is a part of life – both the good and the bad – but it’s a work in progress to say the least.  What I have learned is the ability to say “NO!” and not feel bad about it – I just can’t be everywhere and do things like I used to.  Initially this was very difficult and there are times when I feel left out or disappointed.  This is one of the things that is difficult to explain and for people to understand.  When I say I’m tired – its not your average tired because “I only got five hours of sleep” its knock you down, not wanting to get out of bed, could sleep for days without waking exhaustion (I could go on but I don’t want to bore you…)  - but I digress…

Since I’m speaking of my experience I can only share what has happened to me but I hope that as time goes on, I learn of other people experiences – it’s always nice to know that you are not alone.  After my diagnosis, I began to research and learn everything I could.  A great resource for me was http://www.lupus.org/ in addition to various journals, reviews and informational packets.  It’s usually where I refer people first to get some basic information.  To save you a trip, I’ll explain it how it was explained to me…  In a healthy immune system, antibodies are released to protect your body against foreign invaders (i.e. viruses, bacteria, etc.).  However, in lupus, a person’s immune system cannot tell the difference between foreign invaders and healthy tissues so it creates autoantibodies (auto means “self”) that actually attack the body’s healthy tissues.  These autoantibodies cause pain, inflammation and damage to various parts of the body (heart, lungs, kidneys, blood, joints).  Lupus is also a condition of “flares” (bad) and remission (good) – as I stated before, it affects no two people the same and the length of a flare or remission can never be measured and is probably different every time. 

The two things that I found most difficult upon my diagnosis was 1) how did I get it? and 2) that there is no cure.    There really isn’t a lot of information out there when it comes to the causes of lupus but information suggests that genes, environment and hormones play a role.  While no one in my family has lupus, there are some that have different autoimmune conditions which could’ve been a contributing factor.  My doctors believe that over time I had developed lupus and an extremely stressful event brought on a flare (which made it very easy to diagnose).  To keep my condition under control, I take two Plaquenil a day and a baby aspirin and a Flintstone vitamin.  The baby aspirin (orange flavored AND chewable J) is to prevent blood clots and Plaquenil is an antimalarial drug that helps reduce inflammation and prevent flares.  I was recently taking Lyrica for my nerve pain but it was deemed unsuccessful and I was taken off of it (Thank goodness because it made me eat EVERYTHING in sight).  For the time being my nerve pain is pretty dominant but I just take it day by day. 

So my regimen is pretty simple compared to others and for that I’m truly grateful.  As I mentioned above there is NO cure for lupus, not even any preventative measures one can take to not get it (i.e. smoking, diet,).  That’s frustrating – with other conditions, there are screening exams or even blood tests to know if you carry a gene or have a growth.  Heck, there isn’t even one definitive test that can diagnose lupus!  These are all things a lot of people (including me) hope will change with new advances in research and funding – I mean it took over 50 years for the FDA to approve a drug specifically to treat lupus.  But its progress and I’ll take that any day over no progress at all. 

Until next time…

Fast Forward

When I was first diagnosed, my rheumatologist termed me “medically boring” which, in his assessment, was a mild form of lupus; meaning it didn’t affect any of my major organs.  Initially, only my white blood cells were affected.  Lupus has caused leukopenia (decreased WBC count), which increases my risk of infection and contributes to my fatigue & bruising.  Originally, this result was a red flag for what they thought might be leukemia – hence the bone marrow biopsy.  Medically boring worked for me – I can deal with naps and only taking medication.  At that time I wasn’t put on any dietary or activity restrictions, was given my medication instructions – Plaquenil 2x a day - and was out the door with another appointment next month…  Sure the fatigue got annoying but I was still able to work and have a social life.  At this point, I felt extremely lucky and thankful – sure I had to make some changes but they were do-able.

And that’s how it went… for quite some time… up until recently.    Even though I didn’t have activity limitations (like working out), my body would limit me in what I could do.  Sure it could’ve been me being out of shape initially but things just seemed different.  I would swell during workouts, my muscles would twitch and spasm (mostly in my legs) and slowly I noticed that throughout the day my arms, hands, legs and feet would fall asleep – the dreaded pins & needles feeling – and it would get worse when I worked out.  At first, I thought it was my shoes so I got new ones – that didn’t work (BUT I got a new pair of shoes J Then I tried different workouts, stretching techniques, nothing seemed to work.  So, I called my doctor and got an appointment – he ran some muscle enzyme tests and blood work and all came back alright (Wahoo!) but the reflex tests… not so much.  In addition to the loss of feeling, I literally have no reflexes at all – meaning when the doc knocks my knee or elbow, my legs & arms just lay there.  Due to this I was sent for an MRI which showed mild lumbar stenosis (no biggie) and mild degenerative disc disease (bummer for when I’m older but other than that no biggie) but thankfully no lesions.  So the next step is a meeting with my neurologist (add another “–ist” to my list of doctors) on July 12^th – one thing I’ve learned not only being a patient in need of a specialist but also a nursing student is that specialists are a pretty big deal and it takes FOREVER to get an appointment with one… unless it is an EXTREME emergency… and even then they say to call 911.   Since the Lyrica wasn’t effective at managing the nerve pain and the only thing that it did do was make me want to eat everything in site, my doctor stopped it and I’m just trying to manage it with heat, ice and relaxation (sounds great I know, but gets old after awhile).  Tomorrow though I am going to attempt to hit the gym – maybe swim… or just sit in the hot tub and relax.  At least I can say I was at the gym J

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So that’s been a quick recap of the last few years to catch you all up – I know, I’m such an exciting storyteller – NOT.  Just had to get that out of the way so that I can focus on the present.  Again to stress, I created this blog to inform & educate people about my illness (hopefully with some wit & charm) and while I’m sure there will be days where I need to vent and such I want this to be a place for people to learn about lupus as well as inspire and encourage those who have the condition to share their story and realize they are not alone no matter how serious or “medically boring” their case may be.  In advance thank you for allowing me to share my story with you.

Gotta Start Somewhere

My journey began in the summer of 2006 when I started to notice odd bruising just about every where on my body.  I couldn’t recall bumping myself or an injury of any kind so I somewhat dismissed it because I have always bruised so easily.  A few months later is when the fatigue set in – I was sleeping upwards of fourteen hours a day – only awake to go to work and even then I drove to the park at lunch to take an hour nap to make it through the afternoon.  I honestly thought nothing of it – I had been going through a busy “season” at work so I thought it was because of that.  It wasn’t until my annual appointment in August when I brought the symptoms up to my doctor that life as I knew it would change. 

My doctor decided to run some blood tests to see if anything was abnormal.  As a person who is used to perfect results, I was surprised to find a voicemail from my doctor’s office waiting for me when I got home from work that same day – the message in a nutshell - get back to the lab, we need to run more tests.  When the second round of tests showed additional abnormalities I was referred to a hematologist.  This was scary stuff for someone who, up until this point in my life, never really had any serious health issues. I met with the hematologist that same week and the consensus – bone marrow biopsy…

My reaction:  “Come again?! Aren’t bone marrow biopsies for people with cancer??

My biopsy took place in January 2007 and by the following week I had an answer – it wasn’t cancer (thank you guardian angel), I had Lupus….

When I first started this blog (two months in the making) I wasn’t exactly sure what the subject of it should be.  Unluckily, I recently have had a flare up with my Lupus and thought that it might be a good place to start.  While it won’t focus squarely on lupus alone, it will include some of the daily struggles that a person living with lupus goes through and the lifestyle changes that I’ve had to make since my diagnosis. Mostly, I hope it will be a place that people can come together to share their experiences, exchange information & resources but more importantly I hope that it creates awareness and provides support & encouragement for all people whose lives have been affected.