Let's face it, Lupus stinks! It changes your looks, your abilities, and your life. I went from doing anything and everything in life to "let's see if my body will cooperate today so I can do one thing on my list". I went from looking young and vibrant to sickly and run-down. I have to admit that my self-esteem isn't at the highest it used to be.

But today, I'm looking past all that holds me back from being happy with my life. There's too much in life that can be appreciated. So what if I can't walk very far today? I can still be able to hang out with loved ones and just do more talking and watching than moving around. So what if I can't move my fingers today? I can always relax and read a good book on my kindle.


I heard a song today that reminded me of loving myself no matter what. Here's an excerpt from the song that holds truth: "I'm not the average girl from your video. I'm not built like a supermodel. I've learned to love myself unconditionally, because I am a queen!". Powerful words that is a reminder that even though you're "different" now, doesn't mean you lost who you are. You're still that strong person inside that is just a bit altered nowadays. You still have faith, love and hope. You still can dream. You could still look beautiful with shorter hair or with a little more meat on your bones because of medications or what have you.  You are still you inside.

If you would like to hear the song that inspired me today, you can listen here.
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My husband and I got married in October 2009 and it was one of the best days of my life.

Everyday I keep track of my symptoms in my daily log and looking through it the other day, it really hit me with how far I have come since I was first diagnosed with SLE. My symptoms were at its worse when I was first diagnosed, however, my flares never seemed to slow down, especially when my days were full of stress. At that time I never realized how much I was doing. We were at our busiest time at work (being a manager, I had to be on top of everything), I had numerous amounts of doctors appointments and tests because my flares wouldn't slow down and I was planning a wedding. A typical weekday would include going to work and staying late (if needed), making phone calls looking for vendors for our wedding, coming home to do some household chores, making things for our wedding and finally, bed. On my days off, I would go to doctors appointments, have tests performed when needed (i.e., x-rays, blood tests, etc.) and meet with vendors or shop for wedding things. I really don't know how I kept up with everything.

Then one day I decided to not spread myself so thin and slow down. I realized that if I kept going the way I was, I may not make it to my own wedding. So as a compromise to myself, I decided to work on wedding stuff maybe once or twice during the week and on the weekends. I also decided to take the week before the wedding off from work to take care of any last-minute or unexpected things.

When wedding day came, I remember feeling so excited and couldn't believe that day had actually come. I actually found my journal I kept that talked about that day. Here's part of that entry:

"My wedding was one of my best days of my life. The only time I experienced any problems was a short dizzy spell when myself and my girls were getting ready. It was a little hectic at that time. But I think the excitement of that day and the adrenaline helped me feel like a million bucks! A few people that knew about my Lupus have told me that they couldn't believe how I lasted that day.

One other thing that helped me was starting the wedding planning early and taking it one day at a time. And I expected that there was bound to be something unexpected to happen so the way I looked at it was that some things are out of my control and I need to take it with a grain of salt. It worked!

I lost a lot of hair from taking MTX so to help with that, I had hair extensions to hide the thinness of my hair. It would have been nice to have my own hair that day but hey, I had to work with what I had, right? It turned out looking very natural.


I'm so happy I lived to experience this day. To be in a room with all my loved ones is a feeling I can't even put into words."

Even though I made it through the whole wedding planning process, looking back, there are things that I would've done different knowing what I know now. Here are some of my suggestions of wedding planning with a chronic illness:

Do:
1.) Start planning early.
2.) Have a budget and try to stick to it as much as possible.
3.) Take it one day at a time.
4.) Hire out.
5.) Ask for help from bridesmaids, family members and friends.
6.) Take time to rest, especially if you're going all day long.
7.) When things start to get to you...breathe....

Don't
1.) Try to do everything yourself.
2.) When you're tired, don't keep going. There's always tomorrow or someone that can help.
3.) Wear uncomfortable shoes. Happy feet = Happy Bride

I hope this will help anyone out that is trying to plan a wedding. The things I wrote about may be considered common sense but it helped me a lot and maybe it can help you too.
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So I mentioned in my previous post about an experience I had recently that caused me a lot of heartache. Actually I went through a whole range of emotion from beginning to end. One third of women experience this. I'm talking about a miscarriage. Mine was considered a chemical pregnancy, a very early miscarriage. My husband and I always thought we would have kids one day but haven't really been actively trying. This pregnancy came as a total surprise. The only reason why I even tested was because I was due to have a CT scan of my chest and was asked if I was pregnant. Just to be on the safe side, I tested. Low and behold, there it was, a 2nd line. I couldn't believe how happy I was to see it. I guess you never really know how you're going to feel about something until it actually happens to you.

We had shared our news with only a few people...my parents, my husband's parents, my sister, my husband's sister and my husband's aunt. Everyone was so unbelievably happy for us. I saw a sparkle in my husband's eye when he gave the news to his parents. My mother had the same sparkle in her eyes. It was the most amazing feeling.

My body felt great as well. No aches and pains for once. I was on cloud 9. I started to imagine our future life with a child in tow and I even started to talk to my baby. I sang songs with him/her and danced to music that I pictured us dancing to when they're in their toddler years. I grew attached.

Then the day came when I called the nurse to tell her about the bleeding I was experiencing. I prayed for days that the little bean would make it through. Unfortunately, that wasn't the case.  That was only about 3 weeks ago.


I started to read a book my sister had recommended called Heaven is for Real: A Little Boy's Astounding Story of His Trip to Heaven and Back. There's a section in there that I related to. You'll know what I'm talking about if you read it. It gave me peace of mind.  

I still think about my little bean everyday. He/she will always be in my heart but I know my baby is in a better place now.
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Sorry guys! I know I've been MIA for quite some time now. I don't have a real good reason for my little sabbatical except that I was a bit overwhelmed by trying to figure out the cause of my muscle weakness and in the midst of doing so, I experienced something that caused me much heartache. I'll provide more details of that on my next post so stay tuned!

Since the start of my muscle weakness (Feb. 2nd), I think I've finally found out what was causing it. What started out as general overall muscle weakness, shortness of breath and burning sensations turned into muscle cramps, shortness of breath and needing to rest when walking any kind of distance. I've had a CPK blood test and vitamin D testing done...NORMAL. I had no clue why this was happening to me and it didn't seem that my rheumatologist did either. My pulmonologist even ran another blood test and CT Scan to see if I had any blood clots in my lungs that were causing the weakness...NORMAL. Then one day as I was talking to a good friend of mine, she had suggested to have my doctor look into my blood pressure medication. My blood pressure medication has never been  a problem for me especially after my dosage was lowered but that got me into thinking my problems might have something to do with the circulation in my legs. Blood clot possibly? I wouldn't put it past Lupus to cause problems in that area any day. So I did my own research and found something called intermittent claudication. Low and behold, I have been experiencing many of the symptoms mentioned! Have I actually found the reason for my ailment four and a half months after it presented itself???

Instead of going to see my rheumatologist, I decided to run my theory across my primary care physician. He agreed with me and told me that there is a non-invasive test that could easily be ran in the office. <kicking myself> Why have I waited so long to see him???  I took the test today and ABNORMAL. I knew I wasn't going crazy after all those negative tests! So the next step is my referral to a cardiologist. Phew! I'm so glad I may finally be getting treatment!

I've learned so much through this journey and I feel so empowered after being proactive and persistent in my search to find out the cause of my symptoms. So lesson to be learned? Never give up!

Things you can do to take charge of your own health:
1. ) Get a 2nd opinion. This never hurts and can benefit greatly.
2.) Network. I found that talking openly with others about their health experiences or health experiences of their loved ones can give you clues with your own health issues.
3. ) Research. Knowledge is power. Today's technology can provide endless information.
4. ) Don't wait too long to get help. The longer you wait to see your doctor about problems you've been having, the worse your symptoms can get. Sometimes, in the end you find out that there was a quick and easy treatment for it.
5. ) Never give up.
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I guess I might've spoken too soon about my Lupus settling down. Within the past couple of months I found myself battling more issues. The latest being muscle weakness. I'm not talking about just a little muscle weakness but the kind that like when doing a load of laundry, I can't hold my own weight when standing up type of weakness.  Climbing the stairs is like climbing a mountain.


Walking the two city blocks to work everyday has been difficult to say the least. I haven't been able to go grocery shopping or run any errands. But I thank God everyday for my husband who has picked up my slack and to my coworkers who have given me rides to our parking garage and picked up some lunch for me so that I didn't have to push myself over my limit.

I took a little break from blogging for a couple of reasons. One, because of this muscle weakness, it was difficult to even type on the computer. Two, I didn't want to bring any negativity to this blog. Then as I thought about it, my blog is about living with lupus. What kind of blog would it be if everything was all rosy and peachy when we all know that Lupus isn't always like that? 

So here goes....

I don't know what the reason is for this muscle weakness. Could it be another overlapping disease (i.e., polymyositis)? Or could it be a side effect of the medication(s) I am on? Possibly both? Well, I went to my rheumatologist and had some blood tests performed, including one called CPK. This tests for any muscle issues. Fortunately, mine came back negative. Unfortunately, I'm still experiencing muscle weakness. I found out that Plaquenil and Prednisone can cause muscle weakness so my doctor had me lower my Plaquenil dosage to 1 pill a day. After three weeks of no improvement, my doctor and I decided to see if Prednisone will help. I'm now on 10mg a day for 2 weeks then I see him to discuss my progress. I'm noticing a very slight improvement after just 3 days of taking it. I'm keeping my fingers crossed in hopes that this steroid treatment is going to work. My husband and I even invested in a new treadmill so I can build up some muscle strength. It's getting delivered today so I'm very excited to start! I have some really fun events planned in the next couple of weeks and it would be nice to be able to function for them.
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I can't believe it! For the first time in what seems like forever, my blood tests have come back good!!! I must be doing something right with the way I'm eating, how much I am resting and generally how I'm taking care of myself. Receiving that letter in the mail motivates me even more to continue taking good care of myself. My husband is even on that bandwagon, especially when he sees me doing so much better. What a great feeling!
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I hope everyone had a wonder holiday! I've been on a little hiatus from blogging because with the holidays, I'm sure everyone can relate on how busy it can get. I did manage to survive by doing the majority of my Christmas shopping online. Thank goodness for the internet! I also made sure I took a lot of breaks and rested when I had a chance.

Anyway, during my little hiatus, I came across an article about Terri Seymour, a model and an ex-girlfriend of Simon Cowell's (from American Idol). She was diagnosed in her early 20's with lupus and almost died from complications of the disease.


I wanted to mention this article because so many times I've wondered if there were any celebrities that can act as a voice to us lupus sufferers. There has been only a handful of celebrities that have opened up about the disease. It was nice to read an article from a celebrity who explains how it feels to live with it. This one in particular had more information about the disease than I've read in other articles. For instance, I didn't realize that rheumatoid symptoms can effect a person's voice.

Since I've been diagnosed, I've noticed that sometimes my voice changes and gets raspy more so than normal. I remember sitting at dinner at a restaurant and trying to talk to my friends at our table and my friends straining to hear me. I tried to talk as loud as I could but my voice just couldn't get louder than a certain point. Other times, I think I'm talking loud enough but hear a lot of "can you repeat that?" and "I can't hear you's". Other times when I talk at the loudest level I can talk, my voice changes for days afterward. It gets raspier almost like Demi Moore's. I think I'm going to bring this up to my rheumatologist next time I see him.

If you'd like to check this article out, click here.  I hope you find this article as interesting as I did.
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