Thanks for sticking with me!

It's been a tough ride lately, not just with lupus but with life in general so I had to put the blog up on the shelf for a while.  I thank everyone who has stuck it through with me, I will be back very, very soon! :)


Lupus vs Lung

Lung involvement... well yes I've had "lung involvement" before, I have had pleurisy and those familiar pains that kind of take your breath away, figuratively and literally.  But this last bout of pleurisy was a bit different to me, a little scarier, a little more targeted around my heart.  I did exactly what you are not supposed to do when something doesn't feel right, I ignored it.  But after a while it just hurt too much so I finally made the decision to call my rheumatologist.

When I spoke to the nurse, I told him about my symptoms and the shooting pains through my heart and aches in my arms and shoulder.  I did make it a point to let him know that both sides were bothering me because I know that it can make a difference in these things.  I figured if I mentioned that it was both sides, which it was, it would ease my mind and I would get the "don't worry, everything is ok, come in tomorrow" confirmation.  Instead, after a long wait on hold, I was told to go to my nearest ER and let them know I have lupus that we need to rule out angina, heart attack, and/or clots.  I don't know about you but when someone tells you do drop everything and get to the ER, you pretty much feel like you're about to have a heart attack right there.  So now there I am with chest pains and high blood pressure YIKES.

My visit was the typical visit in the ER.  When you have chest pains, you are pretty much a rush to the back but then it was test after test.  Blood, EKG, Xray, CT scans all to make sure I didn't have anything that was going to take me out right then and there.  I mean I woke up that morning with common symptoms of pleurisy and now I'm facing my mortality.  It was all so surreal.

It turns out I didn't have any of those issues, I was diagnosed in the hospital with pleurisy complicated by Systemic Lupus Erythematosus.  Yes, 5 hours of testing and hundreds of dollars of medical costs later and I felt ridiculous until my mother-in-law said "I'm so happy that we know you don't have any life threatening issues."  Yes, yes I was too.  I also now realize after that ordeal that there are lots of serious issues that I never really think about.  I always think about the most common serious problem with lupus and that is the kidneys but never thought about the lungs past a pleurisy issue.  After my ordeal, I decided to do research into lung involvement in lupus and was amazed to the complications that can be as a direct cause of lupus which I will list below:

1. Pleurisy (or Pleuritis) - Inflammation of the Lung Lining
2. Acute Lupus Pneumonitis - Lung Inflammation
3. Pulmonary Hemorrage - Bleeding into the Lungs
4. Interstitial Lung Disease
5. Pulmonary Embolism - Clots in the Lungs
6. Pulmonary Hypertension - High Blood Pressure in the Lungs
7. Shrinking Lung Syndrome

It just so happens that Lupus Now (the seasonal publication from the Lupus Foundation of America) did an article for the Spring 2012 edition: Breathless: Understanding the connection between lupus and the lungs

I'm happy to say that I am getting better after fighting this pleurisy for almost a couple of weeks.  I am scheduled to do the Walk for Lupus Now on this Sunday and I've been really excited to walk for it so I'm taking it really easy this week so I can do it.

I hope you are all doing well :)


From Perfectionist to "Good Enough" - Learning to Come to Terms With Your Limits

When I was a young girl, I probably was one of the very few people that enjoyed the beginning of the school year.  Of course, the usual going back and seeing my friends and getting back into my social life was something to look forward to but for me it was more than that.  It was a new beginning.  I absolutely LOVED the new school supplies, my new clothes, my new book bag, but most of all I think what I was most excited about was starting anew and organized and having my calendars in order.  I guess you could call me a little neurotic when it came to being organized.  I loved it, it made me feel in control not in a controlling way, but as opposed to out of control.

This carried on into my adult years.  The best part of New Years' for me was that I could start everything new.  New calendar, new planner, new to-do lists, MY HOUSE... do you see where I'm going?  New plans, new goals.  Things that I have to do, I had plans to tackle and I was going to do it because it was a new year.  And for the most part, I did pull it off... you see, I have always strived to keep things in order if that is what I planned to do but sometimes things change like getting sick.

When you are sick, the invincibility is gone.  You have limits, so you pick your battles day to day.  You may not be able to do all those tasks on your calendar or on your to-do list and have to postpone them.  Yes, with the type of person I am... that took a long time to come to terms with.  I did what any perfectionist did, I gave up.  I let everything go.  Except for the basics that absolutely without a doubt need to be done, like pay the bills, and the like... I just let it all go, why? I guess the reasons I could come up with is that I'm a perfectionist and 'why bother?' my house, efforts, will never be the same again.  Even with my family helping, 'it just wasn't the same' 

And do I need to mention the feeling of being overwhelmed?  When I was well, I could pretty much clean my entire house in a weekend.  When I realized I couldn't do that anymore and the feeling of a never ending of accomplishment, because that feeling of when the entire house is clean AT ONCE is just a feeling that, well for me, is a pretty darn good one.  Did I say feeling of accomplishment?

BUT I had to change my mindset, I had to learn that there will be no such thing anymore for me as clear outs, or organizations, or seasonal cleanings such as spring cleanings based on a calendar.  It's now based on my internal wellness calendar.

As I sit here and reminiscence about the good old days, the ones where right about now my entire house would be clean today because my goal would be to start the new year with a sparkling house, I look around and see dust on the window seal and a ceiling fan that needs vacuuming.  I did tackle a couple of rooms this past weekend, which seems to be how my good days go on top of my regular tiding and regular keep up.  It's not something to get upset about because it will get done... I have learned to embrace that as long as I did my best, it couldn't be more perfect.