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.

Personal Update - New Rheumy, New Med

Well, I haven't been around in over a month and it's kind of been a mix of reasons.  For the most part; I haven't had much of anything new to report and I have been extremely busy and when I'm not busy, I'm resting.

I did want to update that I did visit the new rheumatologist last month and she was very pleasant.  Now I realize it was only the first visit but she listened well, agreed with my diagnosis which meant not go through the entire diagnostic process again (it helps when you have ALL of your medical records), and she also agree that the current treatment I was on was not cutting it.  So, she started me on CellCept which I am taking 3 pills a day (1500 mg).  I am into it now for about a month and I have to say that I am not experiencing any ill side effects.  I know it's going to take a while to know if this medication will work for me but I'm holding onto hope.

Anyway, I just wanted to reach out and touch base and let the "world" know I'm ok.  Once the holidays are over, I'll be more active... you know how it is. :)

When Both Suffer a Chronic Illness

My husband recently received a new diagnosis.  It's quite interesting how the whole diagnosis went about, well not interesting per se but quite typical of my husband.  He had mentioned that he had some sort of wart-like sore on the skin between his thumb and forefinger and that he picked at it and it just got worse.  When I finally looked at it, it looked very cracked and looked like it could have been very well infected.  I immediately told him he needed a doctor because it looked bad and I didn't want him losing a hand (half-jokingly).  A week went by and since I hadn't heard anything else about the hand I assumed that it had healed up on it's own and everything was great. 

"Honey, look at my hand"
"GAH! what the heck??! did you not go the doctor?"
"No, and look at my finger on my other hand"

By then, I knew something wasn't right and he had some kind of problem going on.  I really had no idea what it was but I knew he had to get it checked out.  I took it upon myself to find him a dermatologist (I referred him to mine but it was too out of the way for him so I had to find him another one). 

Long story short, after a couple of dermy appointments, and 2 biopsys later, he received a diagnosis of psoriasis.  Since then, he has also had elbow rashes and one on his lower 'erm' backside.

Another fact about psoriasis is that 1 in 20 actually develop psoriatic arthritis.  Yes, I've read up on it and yes it's pretty bad.  My husband has been complaining of back pain for a couple of years and has maxed out his chiropractor allowances through our insurance.  He has also mentioned that he also has joint pain when I say I'm hurting.  I mentioned before that I thought it was his was of being a little facetious but one has to wonder now.  I'm trying to get him in to see a rheumatologist.  He told me he will just tough it out.  I don't think it's such a good idea given what I have read about psoriatic arthritis and it's progression.  I guess I will just have to keep working on him.

He doesn't worry about much, that is one of the reasons I love him so much.  He is so carefree, but I hate to take the burden on myself all the time.  Another issue I worry about is our son.  I did have concerns for him when it was just me that was sick and what I would pass down onto him but now I am quite concerned (and feel so guilty).

It Takes a Special Person

I consider myself lucky.  I didn't always think like that.  In fact a few years ago, I had a major chip on my shoulder.  A chip I believed was justified because, well, my husband just didn't care that I was sick.  I couldn't have been more wrong.

Those of us know what it's like to live with a chronic illness day in and day out.  It's a battle and we muster what we can to get through it mostly only worrying about today.  We deal with the pains, the fatigue, even the more serious ailments if that's happening at the time but mostly it's just about getting through until tomorrow which will be better because, well, it has to. 

For most spouses and partners of people with chronic illness, it is not that cut and dry.  Living and loving someone whose faced with an uncertain future hits hard on them not only on a physical level but also on an emotional level.  Some may not show that emotion because they believe they must be the strong one.  They keep it in.  Unfortunately, sometimes we (the sick ones) mistake that for disregard.  Sometimes we need to step back and feel what it may be like in their shoes, the physical pain may not be there but their heart may be hurting out of helplessness or sympathy.  I know for me personally, it is so much easier for me to be in pain than to see the people I love in pain.

My husband may not outright ask me about how I'm feeling all the time (although he does ask me from time to time as I do him).  And you know unless I'm in really bad shape, I don't want it to be the topic of our conversations all the time.  A few examples of what he does do is remind me that I really should be in bed because I need my rest or rubs my back when he thinks I'm sleeping.

I have felt the guilt more than once just about being sick.  And even though I fall into the mild to moderate category, my disease is very unpredictable so I laid it all on the line for my husband about the worst possible things that could happen to me and the aftermath.  I gave him outs, outs, and more outs... I never wanted him to feel like he should be the one to suffer from this unfortunate situation.  That he could actually have a good life.  He was hurt, hurt that I ever could think that he would ever do that. "We will always be together" he told me.  Never again did I bring it up (not seriously anyway).

Unfortunately this isn't always the case.  I've had friends with illnesses that had spouses that just couldn't deal with it.  They were verbally and/or physically abusive, adulterers, or just took off and left all blaming the 'hardship of the disease'.  This breaks my heart but I hope my story encourages those who have been through those situations or have yet to meet that special person that there are wonderful people out there that look past all of that and see the PERSON and not the disease.

For those of you with loved ones - partners, spouses, family:
-Stop and let them know how much you appreciate them for just being them. 
-Don't let the disease be the 3rd wheel in your relationship, know it's there but don't let it have a spotlight.

My Thought Today

Thoughts of tomorrow are nice to keep us hopeful that things will be better.

Desperation of another chance but when thoughts of that chance turn grim that reality may not bring a better time, is it tomorrow that you need be?

I long for today, just once to feel free. 

Free from the cursed eternity that's wrapped around me. 

To live again like life felt before, I know that feeling no more.

But you see, whether today or tomorrow, it's all a gift - it must ALL be seen as a gift;

to remember, to always remember to...
live for the moment, for I am still here.


-BD