Terrible Timing

What a crazy summer it has been!  I can’t believe I’m sitting here preparing to start clinicals for the Nursing program in exactly one week!  Yesterday was a pretty exciting day as my books started to arrive and I got my stethoscope!  I’m sure the excitement will wear off after the first week or so but the anticipation is killing me!  The last two weeks have been busy with orientation, CPR certification, drug testing and getting everything in order like paying tuition (ick!), buying books (more ick!), and ordering my uniform.

Other than that most of my summer has been spent working.  As most of you know I have maxed out my student loans so the next year and a half of school I am paying out of pocket.  Translation: SAVE! SAVE! SAVE!  Even though we were unable to go to the Dells this year, Ed and I still managed to do a lot of fun stuff!  We made it to some festivals, fairs and visited the Art Museum.  We went to a day of Packers training camp and walked around Lambeau Field.  We found new trails to blade on and are going to try to make it to Devil’s Lake to do a few hiking trails.  All in all, it was another great summer that went by too quickly!  

One of my goals this summer was to get back into shape and shed the dreaded “prednisone pounds” (as I called them) as well as the weight I gained because I got lazy.  I’m happy to announce that I have lost twelve pounds and a few inches in my waist and hips.  It definitely feels great to set your mind to something and accomplish it!  I’m in the best shape of my life and that feels really great.  It doesn’t hurt that I fit into my favorite pair of jeans again either! 

Since I had been feeling so great, you can imagine my surprise when I went in for my three month check-up and my test results were a bit concerning.  Before I get into the nitty gritty, there are a few terms I wanted to define as I will be referencing them and not everyone who is reading may know exactly what they mean…

Taken from http://www.nhlcyberfamily.org/tests/blood.htm

White Blood Cell Count (WBC) is the count of white blood cells called leukocytes. WBCs defend the body against infection and make up part of the immune system. Like other blood cells they are produced in the bone marrow. The total number of white blood cells has a wide range from 4,000 to 11,000 per cubic millimeter in the average healthy adult.  A low WBC might mean there is a problem with production in the bone marrow, which could be the result of various chronic diseases. It can also be a side effect of various different drugs, particularly chemotherapeutic drugs for cancer treatment. 

Complete Blood Count Differential is a breakdown of the different types of white blood cells and is usually expressed as a percentage of total WBCs.

One Down, Two to Go!

Well I’ve finished The Girl with the Dragon Tattoo, all 644 pages of it. Now moving on to The Girl Who Played with Fire, all 724 pages of it…  The first few chapters are really good and it helps that the movie hasn’t come out yet.  My mistake with the first book was that I saw the movie first.  While I thought the movie was good, after reading the book I realized the book was MUCH better and the movie left out a lot.  I think that’s how it always goes though… I have yet to find an instance where the movie was better than the book.  If any of you have, let me know cause I’d love to read it and then see it!

Can you believe that it is almost the end of June?!?!  Quite sad I know; my summer is going by so quickly and there is so much I still want to do but I seem to be running out of time!  As I mentioned last post, Ed and I have taken up rollerblading!  Since I’ve had mine since high school, you can imagine how beat up they are.  Our last trek out, I realized that I am in need of a new pair since I can’t even coast down a hill because my wheels are so torn up.  SO after a lot of research and of course, waiting for coupons, I sucked it up and bought these beauties!  I am SO excited for them to come!  They got terrific reviews and will definitely last! 

As many of you know, a big part of my summer has been devoted to losing the weight that I gained from my medications as well as lack of time/motivation/energy that school takes from me.  When classes finished for the semester,  I was thrilled to be able to have my days consist of eight hours of work and then nothing else – no homework, no class – just being able to come home and do what ever I want.  For those of you who have been where I am (or are currently) in the never ending battle to lose weight, I wanted to share a cool little tool that has been helping me.

Meet the newest addition to my weight loss team – the Biggest Loser Slimcoach!  It may just be the best invention ever!  I first came across it on the show The Biggest Loser but didn’t realize it was available for purchase until I saw it in the store one day while shopping around Christmastime.  Given that it was so expensive, I didn’t purchase it.  Instead, I purchased a pedometer to keep me on track to my goal of 10,000 steps a day.  However, it wasn’t a great indicator of the actual steps I was taking and kept falling off.  Eventually I lost it and it ended up being a waste of $15 but thankfully, it was only $15.  Ed saw this and instead surprised me with the Slimcoach.  (I am so spoiled and will be the first to admit it).  Basically, it’s a pedometer on steroids is how I best describe it.  You wear it on your waist and it tracks your steps, heart rate, calories, steps and miles.  After you activate your device, you enter in all of your biometric information and your goals.  Based on the information, it sets up a program for you.  Each day you plug it in to your computer and it updates the information and tracks your progress on the dashboard.  At the end of each day, you want the circle indicates you have reached your goals for the day.  As part of your program, it sets the amount of calories for you to consume (based on your goals) and sets a diet plan for you as well.  There is also an online community that you can join so that you can talk with other people who are also using the program! 

                                                                                                                                                                                                                                                                       

It’s only my first week but I’m completely sold on it!  The thing that I like best about it is that it keeps me on track and holds me accountable.  If I see that I’m not all green, it pushes me that much harder at the gym or in what ever activity I’m doing.  I also love reaching my goals for the day or week – it’s a great sense of accomplishment.  So far I’ve managed to get green everyday and I hope to continue to keep it that way by pushing myself harder.  The other important thing is that it isn’t some fad concept, in that, it is something that can help you achieve a healthier, active lifestyle that is more manageable and you will be more likely to stick with.  I’m confident it will assist me in my quest to drop my “prednisone pounds.” I’ll make sure to keep you posted, of course, on how I’m progressing.

In other news, I think I’ve gotten all my immunizations and appointments taken care of for the start of clinicals in September.  Let me tell you though, what a pain in the you know what!  The shots still aren’t pleasant (especially when you have to get one in each arm on the same day) and the tetanus still continues to be the worst shot EVER!  I was a little nervous about getting my MMR shot since we just got my levels back up to my normal range, but my doctor told me to just monitor my temperature and note any strange symptoms.  If anything, I have another check-up with my rheumy in August so if something does come up, we will catch it rather quickly.  I am continuing to feel great, which is a relief since I’ve been off the prednisone.  I still need to take a nap most days but I am definitely taking advantage of the extra energy and motivation!

I am happy that we are starting to get some relief from the heat!  The weather is going to be absolutely gorgeous the next few days!  Since I will be outside a majority of the time, I’m happy that it won’t be so hot!  I’m thinking some pool time is in definite order!  I hope you all have a wonderful weekend and as always, thanks for reading.

Till next time…

Times are a Changin'

Happy Tuesday!  The mood is great over here as I’ve just finished the last of my prednisone taper!!  WOOP!  WOOP!  For those who have ever had to take this medication you know what I am talking about.  It has been quite a roller coaster since early March and I am extremely happy to be on the upswing once again.  I still have certain days of feeling like absolute you-know-what but it is NOTHING even remotely close to how awful I was feeling before. 

My blood levels are back up thanks to the prednisone; however, my doctor is still monitoring me since medication is the only way to keep the levels up.  She agreed to do a taper due to the side effects I was having so we will see what my levels are when I go for my check up in August.  During this flare I developed a heart murmur, but since my echocardiogram came out normal, I am not concerned.  For now, it will continue to be monitored as it could just be a side effect of the prednisone. My CT scan also showed some swelling around my liver and gallbladder, but again, it will continue to be monitored as it isn’t causing any immediate problems, just minor discomfort.  In the meantime I am doing everything in my power to remain stress free, stay active, eat healthy and rest.     

Speaking of staying active, Ed and I dusted off the old rollerblades and have gone blading a few times already this summer.  We’re trying to switch things up a bit so we don’t get bored just going to the gym.  We found a great trail pretty close to us so it’s been a lot of fun!  He’s also been taking me under his wing when it comes to golfing J  I had my first experience at the driving range a few weeks ago.  It didn’t go as badly as I thought but I don’t quite understand the concept of golf being relaxing as I found myself quite frustrated many times!   It’s definitely something I’d like to do again and eventually would like to play a course. 

This past weekend, we had the 11^th Annual Strides for Lupus walk as well!  It turned out to be a beautiful, albeit FLIPPIN’ HOT day!  Despite the heat, there was a great turnout and attendance was up since last year which is always a good thing J  Its always great to see the event grow each year, but, at the same time, a bit disheartening as more people are being diagnosed and living with this disease. 

Aside from that, my summer has been pretty typical.  I’m working full time and my second job is starting to pick up – a little extra $$ never hurts!  Ed and I have talked about taking a weekend vacation but so far our schedules haven’t been cooperating!  Hopefully we’ll be able to get a few day trips in sometime soon.  I am determined to get some sort of tan this summer, although having to use SPF 50 might make that a bit tough.  I tried using the DIY spray tan last year and was a splotchy mess!  Fingers crossed – lol!  I also have a goal of finishing the Girl with the Dragon Tattoo series (three 600+ page books – yikes!) and the Hunger Games series.  It’s a little bold but I need to keep my mind active so I’m ready for the fall semester madness.  I am also making every effort to meet up with friends and spend time with family.  Time is for sure flying by as it is the middle of June! 

All in all life is good.  I continue to take advantage of my good days since I know it can change at the drop of the hat.  As always, thank you for taking the time to read J

Till next time…

The Waiting Game

So it’s been a bit over a month and what a crazy few months it has been!  First, to get you up to speed on a few things… 

My most exciting news was that I was accepted to nursing school!  HOORAY!  It is such a relief to finally know and takes away a bit of the stress that I was feeling before.  I begin clinicals in the fall and in two years I will be an RN (just have to pass the NCLEX)!!!  I cannot explain how great it feels to finally see the light at the end of what has seemed like a never ending tunnel!  This summer will consist of me getting my physical, getting immunizations, getting CPR certified, etc.  The closer it gets the more exciting/real it becomes!  In another school note, I am in the last week of my classes which is a relief at this point.  This has been an extremely difficult semester for me, not school wise but health wise.  Since midterms, I have been counting the days and the time is finally here!  I am officially done for the semester on May 18^th and believe me when I say AMEN!

Some other exciting news on our front is that Ed was accepted to his Master’s program for Accounting and will begin his program this summer!  In addition Ed got a Teaching Assistant position for the fall semester!  It’s exciting because he gets to get back into teaching, which I know he really misses, and involves a topic that he is extremely passionate about – Economics.  In addition to his classes, he will be attending an extra class and then teaching four discussion sessions.  He is really looking forward to it!  We are so blessed that things are falling into place for us and we couldn’t be more thrilled!

Outside of school, life has been pretty typical.  My lupus flare hasn’t seemed to subside at all and has decided to intensify a bit.  In my last post, a little over a month ago, I was put on a taper of prednisone in hopes that it would bring my white blood cell count up to my “normal” range (As I stated before, I have leukopenia due to the lupus so my “normal” count usually is around 3).  Unfortunately, when I went back last week for lab work, it was found that they are not going in the direction we would like, and are actually still decreasing.  Needless to say I was a bit bummed because I truly believed that the prednisone would do the trick.  My doctor says this is a direct result of the lupus being extremely active and she wants to take a more proactive approach to try and get me back into remission.  The plan of action moving forward is to put me back on an increased dose of prednisone (no taper this time L) and add Imuran (for more information on Imuran, click here) along to my daily dose of Hydroxychloroquine.  While I am not a fan of all the medication, I am more concerned with feeling better and hoping this does the trick and will be something that is short-term.  I go back to my doctor on May 15^th to have additional lab work and tests run to double check that everything else is working like it’s supposed to.  For now, its kind of a waiting game...

In the meantime I have really been trying to focus on maintaining a stress/negative-free environment and concentrate on listening to my body instead of trying to push through the pain and discomfort just to please everyone else.  I don’t expect people to be sympathetic to my situation, we all experience difficult times on different levels – it’s a part of life.  My main goal in sharing my experience has always been and will continue to be about creating awareness and bringing attention to a condition (not a fan of the phrase disease) that continues to affect more and more people each day. 

May is Lupus Awareness Month, please do me a favor and be aware of impact on not just the person living with it but also their family and friends.  Pay attention to the information that is out there because it is more relevant that you may think – for more info visit.

As always, thanks for taking the time to read –

Till next time…

Sooner or Later

Well it’s finally caught up to me!  That’s right, I’ve managed to stress my way into an active flare and it couldn’t have come at a worse time.  Well, is there ever a really good time?  No, but I suppose if its going to happen, it might as well be over my spring break when I have the time to rest and relax as opposed to making it worse with my 14-hour days when I am in school.  I will say that I’m not surprised as I was pretty much daring my flare to happen by pushing myself a bit too hard.  For some reason, I thought I was immune (no pun intended) to flares since my last one was five years ago. 

As I have stated before, lupus is very unpredictable condition.  In my case, I was moving along in life, being able to manage my condition with medication, rest and just listening to my body.  (That has been the most difficult part that I’ve had to adapt to – stopping instead of pushing through).  When a flare hits, it affects each person differently as well.  This time around, I got a fever, pain, swelling & stiffness in my joints (neck, hands, hip, knees and ankles), mouth and nose sores and brutal fatigue.  In addition, my white blood counts dropped to 2.5 (normal range is 4) making me more susceptible to infection.  During a flare, I have between 2-3 hours of productive activity before I need a nap.  For someone who is always on the go, it’s a hard concept to grasp and adapt to but it is just another life adjustment that needs to be made.  My doctor has put me on a regimen of prednisone for about two months and we’re both hoping this does the trick!  I am, however, NOT looking forward to this as prednisone has many unappealing side effects that I’m hoping will spare me since I’ll only be on for a short time (i.e. acne, weight gain, moodiness, etc).  I would prefer not to derail “Project Hot Bod” (my attempt at getting fit and toned for Summer – laugh if you must but its my own little program J)  as I have started to finally make some progress. 

If this has taught me anything, it’s a definite lesson in stress AND time management.  There are times that I have been doing way more than I should as a means of testing myself that it was bound to catch up to me sooner or later – at this point I’m just pretty mad at myself.  Strangely, this semester is a teeny bit less demanding yet I feel more stressed than in previous semesters.  I am awaiting the news as to whether or not I have been accepted to the nursing program.   I should be finding out next week but as the date draws closer, it gets more nerve racking thinking about all of the different outcomes and back up plans that have been racing through my mind.  Combine that with lack of sleep, working two jobs and studying – what do you get???  A flare!  I am thankful that it happened at a time in which I am able to recuperate and am not forced to miss school.  It is pretty difficult to make it through the work day but the nap when I get home definitely helps. 

The only other positive thing that has come out of this is that I am able to further demonstrate what its like to live with lupus.  Mostly, what I can finally show is the impact on day to day life – one day you’re feeling great, the next you can be bed ridden.  Even in the midst of a flare, I am still lucky because it isn’t affecting any of my major organs.  I am currently being monitored for that but even for as lousy as I feel, I’m just glad it’s not as bad as it could be.  Even though it can be an inconvenience, I’m pretty sure I can live with naps, relaxing and Ed catering to my every need (lol - just kidding although he is a TREMENDOUS help!).  Moving forward now, I’m definitely going to have to reevaluate my schedule and make sure that I’m taking better care of myself (easier said than done I know).  I will definitely make sure to keep you posted on my progress as well as if I was accepted to the nursing program or not.  Thanks for taking time to read and I hope you are all able to get outside and enjoy the beautiful sunshine (at least in Wisconsin)!  Happy Spring J

Till next time…