Life, Interrupted

Back to School Already?!

2012-01-20T11:01:00.000-08:00

Time flies! I cannot believe it is already the end of winter break and I start classes again on Monday! I have been spoiled these last three weeks with having a “normal” schedule and being able to catch up with family and friends. I made the most of my time and got together with good friends, spent time with family, saw movies, went to the gym and got the apartment in order. I am sad that my Packers were one and done in the playoffs BUT at least the Christmas tree was able to come down before school started J Last year, it was up until after the Superbowl since it was a Packer tree…

Over break, I also worked on my admissions application for nursing school. It was due January 17^th and let me tell you it was a pain in the you know what. I must have written fifteen different revisions of my essay before I believed it was good enough! A HUGE thank you to my-coworkers Lynne & Harold and Ed for being my proofreaders and helping me out so much (as well as putting up with me being stressed). I was so happy when I turned it in last week – now it’s a waiting game until March. I have mixed feelings as to whether or not I will get in. There are over 160 applicants and they only accept 56 – so it’s pretty competitive. I have a strong GPA, solid work and volunteer experience but the only thing that makes me nervous is the essay portion – you just never know! I guess I’m just crossing my fingers & toes.

I was also ecstatic to be able to get back to the gym! It felt so good having enough energy (after a nap of course J) to push myself hard and be completely exhausted. It was such a great stress reliever and the best part was getting stronger, quicker AND lighter ;). I’m hoping that I am able to continue my regimen once classes start. This semester is going to be pretty crazy - I’m taking Microbiology, Biochemistry, Nutrition & Psychology. I’m not a fan of my schedule as my day will begin at 4:45 am and end at 5:30 pm BUT I am one semester closer to finishing so that gets me through! Ed begins his tough semester as well – he will be taking the GMAT on January 28^th and will hopefully be starting his Masters program this summer. It will definitely be a hectic few months but in the long run VERY well worth it!

As for the lupus, all seems to be quiet right now. I’ve been able to manage it quite well with medication and rest and I truly believe my change in diet and increased exercise have been a big plus. Yes it takes my body a bit longer to recover and I’m a bit more tired these days but I can’t complain. I have a check up in February with my Rheumy and with the way I feel, I’m confident all of my blood work will be within the my “normal” ranges (cuz really what is normal anyway??). Soo… life is good!

Over break I have had some time to do a lot of reading on various research being done as well as a few articles related to new findings, etc. I have included them in my links so please check them out! Also, I have updated my question section to get a sense for which symptom is most troublesome for people living with lupus. As always, I enjoy getting any feedback from you as well as any ideas you may have on topics to cover/research. If you live in the Milwaukee area, please stop by the LFA office on Tuesday, January 31, at 6pm for the first support group of the year. The session will feature Elisabeth Hill, RD who will be speaking on the importance of a lupus patient’s diet. Ms. Hill is a Registered Dietician with St. Agnes Hospital in Fond du Lac.

2012 is off to a great start and I hope and pray that it has been as great of a year thus far for you as it has been for me. Keep fighting and stay strong!

Till next time…

Home Stretch!

2011-12-15T06:31:00.000-08:00

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

2011-11-08T19:24:00.000-08:00

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!

2011-10-13T07:07:00.000-07:00

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 :)

2011-09-15T08:21:00.000-07:00

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

2011-09-08T08:52:00.000-07:00

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??

2011-08-29T09:53:00.000-07:00

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!

2011-08-24T12:08:00.000-07:00

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???

2011-08-19T07:57:00.000-07:00

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

2011-08-11T09:31:00.000-07:00

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

2011-08-08T11:17:00.000-07:00

**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!

2011-08-01T09:52:00.000-07:00

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…

The Heart of Life is Good

2011-07-29T10:31:00.000-07:00

I can’t believe how quickly this week has flown by! Looking back it seemed so busy but sitting here thinking about it I felt like I got nothing accomplished! It was Ed’s first week back at work after his six week medical leave for his knee surgery. It’s been an adjustment getting back to our old routine – it was so nice having him home and just being able to spend time with him. For those that have ever worked in retail you know what I’m talking about. His logs about 50-55 hours a week including weekends & holidays – it can be frustrating… not only for him but for me. So the last six weeks we took advantage of our time together while he recuperated. Ironically his leave was also helpful to me both mentally & physically… I wasn’t as stressed (believe it or not) and just felt more at ease, which in the long run has helped me to feel better about everything in general. He was able to go to appointments with me and just be a big support with everything that was going on.

After speaking with my Neurologist on Monday (he was back from vacation), he informed me that he would like me to begin seeing a physical therapist for my neck, upper back. He explained that the muscles surrounding my cervical spine area & neck are so tight that they are compressing my nerves which is causing the tingling/numbness in my hands & fingers. He believes that if those muscles get loose and function how they are supposed to, the numbness will go away. Needless to say I am thrilled with this news! He also said that it should help my postures which, for those who know me, know I have terrible posture so that is an added benefit J.

On another positive note, I was able to sleep through the night both Wednesday night and last night. I was so thrilled – it was the first in over 1.5 months so it was long overdue and greatly needed! My fatigue hasn’t let up at all and I still have to nap everyday after work before I can be functional for the night. If I don’t get one in, I’m useless by 7pm. Today has been rough because we attended the EAA Air Venture show yesterday so I was on my feet in the sun all day yesterday. Even with SPF 50 reapplied every two hours, a hat & sunglasses I still managed to get a minor rash and sunburn – arg! I shudder when I think of the pain I would’ve been in had I not had it on! It was my first time attending this event and I must say it was pretty cool! I have never seen so many airplanes in my life! We saw old war planes, got to tour the U.S. Customs planes & National Guard refueling planes, Coast Guard helicopters, etc. We also toured the EAA Museum which was really interesting as well. I’m definitely paying for it today but it was worth it.

Ed & I both work this weekend so a majority of it will be spent catching up on rest and hopefully finalizing our Dells trip! Not much else to report on the health front as I don’t see my rheumatologist until August 23. So I’m just counting the days and hoping to get in a bit sooner - but seeing as though it’s already August on Monday (where does the time go???) I’m just going day by day and relishing in the fact that I have energy and am grateful for every day that I wake up pain free (or at least tolerable) and am able to get through the day. So needless to say life is good!

Till next time…

Another Week Begins

2011-07-25T12:26:00.000-07:00

After a difficult week, I was so ready for the weekend to be here. It was also Ed’s last weekend before he went back to work – he had knee surgery six weeks ago –so we wanted to take full advantage of the time. Once I got home from work on Friday we wasted no time in letting the weekend begin. We started out at Painted Parrott for a Fish Fry (our favorite) and then headed to Falls Fest in Menomonee Falls, WI where we danced & sang (and sweat) the night away to the Sweet Tarts band. They put on such a fun show – my body was pretty sore from dancing but it was so much fun so it was worth it! Saturday I slept in until 9:30am and it felt great! Then we headed to mall where I was on a mission to find a sun hat for when we go to the EAA show this week. This excursion actually took pretty much out of me so I was happy to be able to get in a much needed nap before we headed to the Zoo for my dad’s work picnic.

This was quite an experience to say the least. The event began at 6pm and the Zoo was open just for the employee’s & their families. We had free reign of the Zoo (so to speak) until 10pm and access to the shows and exhibits. There were also vendors set up where we were able to sample various snacks, meals & desserts throughout the night. It was so much fun! Ed & I were pleasantly surprised and we’re looking forward to next year! Sunday we went and saw Captain America (which was great!) and cannot WAIT until The Avengers comes out next May. Even though I was still pretty tired, I managed to get through the movie and grocery shopping before I needed to take another nap! Even though I felt worse as the afternoon went on, I sucked it up and headed to the gym where I managed to get through a 30-minute cardio workout and then cooled off in the pool.

The rest of the night I was on the couch relaxing and getting ready for the week reflecting on what was another fantastic weekend! I can’t believe we are entering the last week of July – Summer is almost over L There is still so much that I want to do before school starts – I hope I can get it all in!

Hope everyone’s week is off to a good start!

Till next time…

Sorry For the Delay

2011-07-20T07:51:00.000-07:00

Sorry for the delay in posting this week; it’s definitely been a surreal & unexpected last few days to say the least. First things first…

Friday I had my 2^nd MRI in less than a month to hopefully find something that could be causing my numbness & tingling in my arms, hands, feet & legs. It was a stressful day because there were many miscommunications between the MRI center, my doctor’s office & the insurance company. Originally, my appointment was at 10:30 am but I was contacted at 8:50 am and informed that I needed to head to the lab pronto (by 9:20 am)to get my creatinine levels checked before I could have the MRI. Turns out the MRI was ordered with contrast so they needed to make sure that my kidneys would be strong enough to flush it out of my system. As I was leaving to head to the lab, I was informed that my MRI would need to be pushed back anyway because there wasn’t a radiologist available to read the results at the location I was scheduled at. So… I still went to get my blood work done at a different facility and then later returned at 3:30 pm for my MRI. At this point I was frustrated because of all the back and forth between work & appointments not to mention getting poked and prodded yet again – I just wanted the week to be over. My frustration & patience was again tested when my appointment was postponed to 4:45 (yes that’s right I waited an hour & 15 minutes) since the MRI machine broke down (I think they could see smoke & fire coming out of my ears at this point…).

Finally, they brought me into the room – this machine was different from the first time – it was A LOT smaller (I was beginning to understand what claustrophobia was all about!) and I started to get really nervous! Since this one was for my neck, pretty much my whole upper body was in the machine – needless to say it wasn’t the greatest experience. Not to mention I wasn’t given headphones this time (just earplugs) so the sound was sometimes awful - not to mention the time where they had to redo some scans because I moved and the images were blurry. It seemed like it took forever – I was so happy for it to be over and I’m hoping that I don’t have to have another for quite some time if ever! (Wishful thinking though)…

Friday night Ed & I took advantage of a beautiful night (before the heat wave roamed into town) and walked to P.F. Changs for dinner. I hadn’t been there in quite some time – it was so yummy and the walk helped me feel a bit better. Saturday we had plans to check out Fish Day in Port Washington but I was unexpectedly called into work (My second job I work as a banquet server at a hotel) so we’ll have to wait until next year. I also received an unexpected call from my mom notifying me that my aunt and godmother, Judy, had passed away. She had been battling Huntington’s Disease for quite some time and even though we knew it was only a matter of time, you still can never be quite prepared for that phone call. She fought very hard & inspired me with her strength & courage. My heart aches for my Uncle Dale and my cousins Brian & Lisa. The fact that she is no longer suffering helps to soften my grief but I will still really miss her. Sunday we all (brother, sister, in-laws) went over to my parents house to spend time with my Mom (it was her sister) and had family dinner & just hung out. It was just nice to be together and know we had each other for another day.

On Monday, I got the call from my neurologist’s office (his nurse contacted me since he is on vacation) with great, good and not so good news. The great news is that I am not insulin resistant – so happy that I’m not going to have to monitor my food intake or add any medication to the mix. The good news was that the MRI was clear of anything major – no tumors, no blockages, no stenosis – much like my lower lumbar MRI, it shows bone deterioration and arthritis. Good news but still somewhat frustrating that there wasn’t a known cause for my symptoms. Where we go from here I’m not sure – I will speak to him once he returns from vacation next week. The not so good news was that my blood work came back abnormal. Us lupies know that this can be quite common but my ANA test came back more abnormal than previously and I also had a high anti-double-stranded DNA antibody count. The anti-dsDNA is a specific type of ANA antibody found in about 30% of people with systemic lupus. Less than 1% of healthy individuals have this antibody, making it helpful in confirming a diagnosis of systemic lupus. I’m told that a high count can mean my lupus is active and that it could be involving my CNS and kidneys. My neurologist says this makes some sense and could be the cause of my tingling, loss of feeling but we won’t know anything for sure until I see my rheumatologist (August 23^rd can’t come soon enough) and run some more tests. As of now, my kidneys are functioning properly and my creatinine levels are within the normal range (they will be monitoring it since it’s on the high end of normal).

I’m taking it all in stride and relishing in the fact that I feel pretty good. I’m not sleeping well but other than that my energy level has been pretty good and I have been able to go to the gym twice in the last week. I’m not really sure what to think about everything so I’m just taking it day by day. Like I said before, I’m not really going to concern myself with the “suggestions” & I’ll wait until I see my rheumy. I have gotten some great resource/support sites from some fellow lupies that I will be posting later. I hope they will help you as much as they have me. Hope you are all staying cool while this heat “dome” is passing through Wisconsin & the midwest. My friends out east - its headed your way, prepare yourselves!

Till next time…

Day By Day

2011-07-13T10:09:00.000-07:00

Where to start? As I mentioned Monday, I went to see my PCP due to some symptoms I had been having. I had an exam and then I was off to get some blood work done and have a urine test. Pretty painless, however, when I got home my doctor called me and decided to order a glucose test based on what he saw from my lab results (I was surprised by the quick turnaround!). My doctor wants to test me for insulin resistance. This is a condition in which your body produces insulin but doesn’t use it properly. So, I was told to fast and I would have my glucose test in the morning.

For someone who loves to eat (especially sweets – just ask Ed J) it was rough not being able to eat after 8pm. Since my neurologist appointment was at 8:30am (more on that later), I had to wait until after to go get my test. By 9:15am, I was ready to gnaw my arm off. Since I had never had a glucose test done before I didn’t know what it all entailed. Unfortunately, when I showed up at the lab I was informed that it was a two hour test, one in which I couldn’t consume any food or drink. Luckily, they had a stockpile of People magazines for me to catch up on Hollywood’s greatest to pass the time. For those of you who have never had a test done, it’s not that bad. Basically, they take a baseline blood draw to compare with the others you take throughout the test. Then, I had five minutes to consume the worst tasting drink I have ever consumed in my life (this really was the worst part). Imagine warm orange syrup laced with sugar. Not something I would make part of my daily routine but once was do-able. It did make me feel quite nauseous for the rest of the day but luckily it eventually subsided. After I consumed that I had to go back to the waiting room and return every 30 minutes for two hours. While it wasn’t the most pleasant experience, again, it was do-able. I was nervous because it always seems to be a struggle to find a good vein for one blood draw, but this was five! All in all, there was a bit of trouble but they did something right because I didn’t even have a bruise this morning (which is extremely rare)!

Tuesday was also the day of my appointment with my neurologist. As I have mentioned before, I was extremely nervous for this appointment because so far my PCP has been unable to explain why I’m having the numbness & tingling. After an exam, blood work and MRI, he still didn’t have any answers so that is why I was referred to a neurologist. As I went into the exam room, the nurse was extremely nice and made me feel at ease. She went over some initial questions, took my weight, height and vitals. I was then left alone in the room to wait for the doctor.

This is the second time that I have seen this neurologist; the first time was last year when I have my nerve conduction test. He is extremely thorough and asked me every single question under the sun! Then he gave me an exam and reflex test & also ordered some blood work to look at what my ANA levels are. ANA, or antinuclear antibodies, are substances produced by the immune system that attack the body's own tissues. This was one of the tests initially run that helped to determine my diagnosis of lupus. My neurologist wanted an updated reading on my current levels since he didn’t have one in his records. He also ordered me to have another MRI, this time it was going to be of my cervical area. This will be my second one in less than a month but I’m thankful for insurance because this stuff is starting to add up! I will be having it on Friday morning.

At the conclusion of my appointment, he began discussing the things that he would be looking for and hopefully ruling out. Based on my physical exam those things included Thoracic Outlet Syndrome, Transverse Myelitis, & musculoskeletal issues. He also wants to rule out any lupus involvement which will show up on the MRI scan.

So that’s been the last two days – hectic with going back and forth but hoping it’s the start of getting some relief & answers. Ed also lifted my sprits by surprising me with flowers when I got home – very sweet. I have been feeling better and have been able to go walking both yesterday and Monday. I think a lot of it has to do with the fact that I decided to just take it day by day and not try to push myself. So instead of planning out how my week is going to be, I just base my day and my activities on how I feel when I wake up. I believe its better for my mindset otherwise I get disappointed and feel defeated.

So overall, good news! Taking things day by day is definitely a lot easier and doesn’t stress me out so much! Hoping I’m able to keep it up!

Till next time…

Always Wear Sunscreen

2011-07-11T11:55:00.000-07:00

Overall, It was a good weekend for me (I consider anytime in which I can be active w/o a nap a good day). Friday night was spent with my family for my mom’s birthday. We had steaks on the grill and played games and I got to hang out my favorite munchkins. They always brighten my spirits, which is what I have needed. Saturday was spent in Madison on a spur of the moment trip. The days that aren’t planned always seem to turn out the best. I was able to see one of my dear friends from college, Megan, and catch up with her. That AND I ate the best BLT sandwich in my life - it had avacado... it was delish and I'm still having dreams about it (shout out to Tipsy Cow in Madison)! I was also hoping to see my cousin Shannon & her family but that didn’t work out since we spent the better part of an hour trying to get unlost (I don’t even know if that’s a word) – guess I will just have to make another trip ;). I was pooped out by the time we got home but I was able to make it until 10:30 pm. Sunday started out alright but as the day wore on, I began feeling worse & worse. The rash on my forehead & cheeks seems to be getting better & better by the day. Thanks to makeup, it is barely visible. We bought new sunscreen and made sure it contained zinc oxide. I was very surprised to learn that many of the sunscreens out there DO NOT contain it, even though it is the only mineral that provides complete UVB/UVA protection & has anti-inflammatory properties. [Speaking of sunscreen, I’ve included a fun song below that sends a good message and always makes me feel better after hearing it]. After we got our weekly shopping done, I was pretty much a couch potato the rest of the night and was in bed by 8:45pm.

Also, over the weekend, I came across these articles and wanted to share them with you. After I read this one I was so inspired and wanted to contact him to see if I could meet up with him! J Wishful thinking I know but what a great goal to accomplish and for a terrific cause no less. There is a link to his blog within the article if you’d like to follow his journey.

When I came across this article I wanted to pass it along because there are a lot of good resources listed as well as coping strategies. I thought it might be a helpful tool that people could bookmark and reference in the future.

It’s a big week of appointments for me. Today I’m off to see my PCP (primary care physician) to get some tests run for some symptoms I’ve been having. I called them last week regarding frequent urination, bubbles in my urine, back pain, low grade fever and general malaise and they wanted to see me. I was hoping I wasn’t going to have to see him but alas... They will be running some tests which I’m hopeful will all turn out normal. This is the one thing about this illness – a majority of the things (at least in my case) are all precautionary measures. This morning, my temperature was 99.2, which is down from the weekend so I’m hoping that is a good sign of things to come. Tomorrow I meet with my neurologist for my numbness, tingling and loss of feeling. Hoping it’s successful and that I’m able to start getting some answers. When I know, you’ll know.

Till next time…

What Gets YOU Through???

2011-07-08T12:59:00.000-07:00

Friday is finally here – Amen! Even though I was at work for only two days, the week moved as slow as molasses. I’ve had lots of things on my mind this past week – my upcoming semester at school, anxiety about my appointment next week & stressing about money ($60/week just in co-pays!!!) just to name a few. But these are every day stresses & anxieties that the average person experiences as well, so my question is – what gets you through?

For me it’s always been music. I still wish I was blessed with some musical talent – I’ve always wanted to learn how to play the guitar & there was a time when I could sing decently (HS choir); although now-a-days I keep it to singing in the car… by myself! Awhile back when I was in the hospital (for an issue unrelated to lupus) I had a music therapy class that gave me great insight as to how to express & manage my feelings. I believe at times there are really no words to truly express/explain how you feel and can be better described by a song. As I was listening to my iPod today, I came across a great song that is a great reminder that no matter how bad life gets you just have to keep your head up and remember that you aren’t alone.

Who do you swim for???

I am a firm believer that we are never given more than we can handle. Even during the times in which I think it can’t get any worse (even thought it usually does) I come to realize, in the end, just how strong I am. For every experience, there is something to be learned and that is one thing about life that I truly embrace. In every situation, fear of the unknown is what can break us, but how we choose to respond is what can make all the difference. So with that I leave you with this song… Hope everyone has a great weekend!

“The hope is we have so much to feel good about”

Till next time…

Back To Reality

2011-07-07T08:56:00.000-07:00

After having five days off (in a row) it was definitely hard to wake up to an alarm this morning! It was so nice to have a break and be surrounded by family & friends these last few days. Overall, I must say it was more good than bad in terms of feeling like absolute garbage but I still struggled. I ran a low-grade fever all weekend (101.4), was pretty stiff & achy, tired (that’s a given) and developed a rash from the sun (even with sunscreen). While all these things suck, I’ve become accustomed to them and just adjust accordingly. I was happy that we were still able to do a lot of things that we had planned to do. We were able to attend a friend’s cookout, see the US Bank fireworks on the 3^rd, see the Tosa fireworks on the 4^th, and go to the Brewer game. I did have to work on Sunday (my second job) but my boss Tammy was good about letting me leave early so I was able to meet Ed & his family down at the fireworks. I was so happy that I was able to make it – even though they seem to go on forever they seem to get more amazing every year! Aside from all of this, there was a lot of veggin’ & relaxing. Ed was great and helped out a lot by cooking the meals and forcing me to rest & sleep. As I mentioned before, he’s had to put up with a lot of mood swings & bad days and just takes everything in stride. So grateful for him.

Yesterday I had another appointment with my chiropractor. I did the electrical muscle stimulation therapy again since it brought me so much relief the last time. It seems to be doing the trick for my tailbone pain. I have also been working on improving my posture and how I sleep (on my back which seems to be nearly impossible!) to see if that helps me to feel any better as well. Seems silly I know, but sometimes little changes can make a big difference. The numbness & tingling are still there and now I’m starting to notice some twitching in my legs and very specific muscle cramping in my calves and above my knees. So I’ll add this to my journal that I’ve been keeping to speak to the neurologist about. Speaking of which… my appointment is on Tuesday!!! I’m getting very anxious about it but so happy that the time is finally here. Waiting over a month to get in hasn’t been fun!

It seems strange that tomorrow will be Friday already – I feel like I just got back. I’m already looking forward to the weekend though. Today I woke up feeling pretty awful but remind myself that I could be much worse off – I think about all the people that are dealing with such greater challenges and it really puts things back into perspective. Anytime I want to have a pity party I think of a childhood acquaintance whose daughter was just diagnosed with leukemia (age 10) and is currently undergoing chemo or all the people who are on a waiting list to receive a working organ. Mostly though I think of all the people, who on a daily basis, don’t have the necessary means to care for themselves and are struggling with an illness. Then I look at my situation… it ain’t that bad (and yes, I know, ain’t isn’t a word!)

Till next time…

Red, White But Certainly Not Blue

2011-07-01T07:55:00.000-07:00

Overall this has been a good week, I’ve felt good more than I’ve felt bad and I’m looking forward to an extended holiday weekend to catch up on sleep & rest. About a week ago, I began seeing my chiropractor (Dr. Scott) again to determine if my nerve pain is being cause by a pinched nerve or something of that nature. The last time I visited him was in 2003 so it’s been awhile. At this point, I’m exhausting all possibilities before I see the neurologist on July 12^th. Mostly, I’m looking for some relief but I also want to walk into the neurologist’s office armed with information on what has worked and what hasn’t. My biggest concern going into the appointment is that I’m not going to be taken seriously and that he will tell me its all in my head. With the MRI not really showing any signs of anything other than mild stenosis (as well as my body aging) it’s somewhat frustrating. Aside from the numbness & tingling, my lower back pain has gotten quite better. For close to eight months I had been having beyond extreme pain in my tailbone area – my only relief came from lying down. Talk about a LITERAL pain in my a**. I had a hard time sitting, walking, standing. It was awful (especially because I sit all day for my job as well as in class) but Dr. Scott has been working his magic and the pain has been reduced significantly through adjustments and electrical muscle stimulation therapy. This therapy helps by sending electrical currents deep into the tissue and reducing inflammation and tiring out my muscles so they stop spasming. Although Dr. Scott hasn’t been able to pinpoint what exactly is wrong, he has concluded that my lower back pain is separate from the nerve pain since the numbness, tingling and pain are still present and has advised me to keep my appointment with the neurologist. While that was a bit discouraging, (since I was hoping that it would be a simple fix) not having the lower back pain has been the greatest relief right now. I felt so great after my appointment Wednesday that I was able to run three WHOLE miles! Granted I had to stop a few times to “wake up” my legs & feet but I finished and it felt great! I’m taking it day by day and fingers crossed that it continues through the long weekend since we have so much going on!

The Fourth of July is my favorite time of the year - there’s just something about this time of year that puts a big smile on my face! Not to mention it’s a time to reflect on and celebrate our Independence. I’m looking forward to spending time with my family & friends sporting red, white & blue, attending parades, eating lots of BBQ, playing games and of course, FIREWORKS! I hope you all have a wonderful & safe 4^th of July holiday.

Until next time…

A Bit About Me...

2011-06-29T09:01:00.000-07:00

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

2011-06-28T06:12:00.000-07:00

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

2011-06-27T13:06:00.000-07:00

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

2011-06-24T10:36:00.000-07:00

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.