Benlysta Vista

Hello my friends! I am officially the worst blogger ever, but am glad to be chatting with you again. It has been a very busy few months. Our annual event, Serving up Style, was a great success. We reached over 10,000 people and shared our new awareness campaign Voices of Lupus with many people, telling the stories of lupus patients. The gala was also a great success and we doubled both the amount of guests that attended and the amount of money raised. Over all, it's been a really fantastic few months even if it is a little busier than my normal life.

Yesterday I started my first infusion of Benlysta, the first approved drug for Lupus in over 52 years. The hardest part was finding a vein in this dehydrated body of mine, but after that it was pretty smooth sailing. I got a little nauseous half way through, but ate a cookie and felt better almost instantly.

Today I have felt a little crummy. I definitely have a headache and am nauseated. As long as I nibble on something, the nausea seems to stay under control, but the headache is definitely the most annoying of my symptoms. They say it should only last a couple days and then you are good until your next infusion.

The way I understand how this drug works is that you have an IV drug treatment once every two weeks for the first month and then you only have to do it once a month after that. If it means no extra pills and that it may make the ups and downs of my disease better, than I figure it is definitely worth a shot.

I'll be sure to update you all as the week goes on as to how I am feeling but for now I hope that you are all well and having a pain-free day!!

"A journey of a thousand miles must begin with a single step."
~Lao Tzu

Dream Big

Hello my friends! Well life has been awfully good to me lately which I always like to be able to say! Things are so busy with my life, but the best kind of busy there is. This busy bee has been working like crazy to help plan for Molly's Fund Fighting Lupus' part in Lupus Awareness Month in May and of course Oregon Lupus Day on May 10th, 2011.

We have been working on some amazing grants for Glaxo Smith Kline and BP. They are really eager to support lupus patients and help us make all of your lives easier. It's so exciting to think about gaining that support and what we could do to make life better for lupus patients.

Lupus Awareness Month is coming up soon and we have so many events coming up with that. We are hoping that the Governor of Oregon will be signing SB 348 into law on May 2nd and on May 10th we'll be having a huge press conference in Salem with the Women's Health and Wellness Alliance celebrating Oregon Lupus Day and Women's Health Week! We will be distributing our materials and telling the press why lupus is an important disease that doesn't get nearly enough attention.

On the personal front, I am happy to announce that I finally am back to voice lessons and singing. For the first time in six years, I am able to get back to my passion and attempt to get back the career that I loved so much before lupus stole it away from me. Music makes me happy and while it's going to take a lot of hard work to get my voice back in to shape, I love every minute of it and have forgotten how happy it makes me. Everyone in life has a passion and I guess singing is mine. Being well enough to get back to it is an amazing gift that I am so grateful for.

For those of you who aren't quite back to being able to pursue your dreams yet, please hang in there. I never thought I would sing again and by some miracle, my lupus calmed down enough to let me get back to it. It can happen and please don't give up hope! Hang in there my friends and never give up on your dreams!!!

"All our dreams can come true, if we have the courage to pursue them."
~ Walt Disney

Exciting Day!

It is a very exciting day for Molly's Fund Fighting Lupus! Yesterday the Oregon state senate passed bill 348 which adopts May as Oregon Lupus Awareness month and May 10, 2011 as Oregon Lupus Day. A couple weeks ago, my mom, Nicole Lawry and I went down to Salem and testified with Senator Diane Rosenbaum for the Senate Health care, Human Services, and Rural Health Policy committee. We talked about what Molly's Fund is doing, the scary statistics of this crazy disease we all have and a couple personal stories which really touched my heart.

I have to tell you that as hard as it was on my body to spend a day traveling and the stress of testifying, it was also a really thrilling moment for me. People were listening when we spoke and acknowledged that this disease is under addressed and needs attention. How often can you go home at the end of the day and say that you made a real difference today? That you helped get an important piece of legislation passed? Not very often for me, I'll tell you that!

I'm sorry it's been so long since I've posted anything, but it's been a really good couple of months and I think I may have thought I would jinx it if I talked about it. It's actually kind of hard to be around all my friends with lupus and be the only one who isn't struggling right now. It was easier when I was sick because they could relate to my situation and we could all feel comforted by the fact that we were in the same boat. I still want my friends to be able to turn to me, because even if I'm not sick right now, I certainly spent the last five years in and out of the hospital and can understand what they are going through.

For those of you who are in the Portland area, we have a support group meeting every second Saturday of the month at the First Congregational United Church of Christ at 1126 SW Park Avenue, Portland, OR 97205. We meet at 11:00 to talk about what it's like living with lupus and it's really great having other people to chat with that are in the same situation as you are. Hopefully I'll see some of you next month!!

"A good laugh and a long sleep are the best cures in the doctor's book."
~Irish Proverb

Summer Days!

Hello to one and all! I know that typically when I blog it's about the things that are going wrong in my life, so I decided to switch things up a little and tell you about a great trip that I just took.

As anyone with lupus knows, getting ready to travel is always more work than the traveling itself. We have to fight with insurance companies over vacation refills, figure out what kind of suitcase you can take and be able to carry, and of course, having to pack as much sunblock as you can. When it's finally all done and you are sitting on the plane, you really do breathe a sigh of relief.

I had the unique pleasure of taking the trip of a lifetime this summer. All my life, I have wanted to go to Greece and I finally asked myself what I was waiting for? A girlfriend and I made plans to fly to Istanbul, Turkey and start our trip off with a fabulous cruise to Athens!

It was almost 100 degrees almost every day on the cruise, so I got a whole new experience in discovering what a hot mess really looks like! I was sweating and wearing my hair up the whole time and was totally obsessive about keeping up on my sunblock!! I'm sure I drove my friend up the wall, but the one thing I discovered over everything else is that I survived. Sure, the heat isn't always comfortable and climbing to the top of an acropolis isn't an easy task, but I took my time, did things my way and I was able to really enjoy the trip.

I know that most Lupus patients out there are struggling with summer flares because of this August heat and my heart really goes out to you all, but for some reason, my body really does better in the warm weather. My joints are looser, my hips aren't as tight, and hey, who doesn't enjoy seeing the sunshine every day? Each of have our own struggles with the weather, but in my case, this heat is working pretty great.

We've been really busy getting ready for the big Molly's Fund annual event called Serving up Style. It takes place at the Oregon Fall Home and Garden Show the last week in September and seems like it's going to be spectacular. For those of your who don't know what Serving up Style is, we invite 12 design teams to have a 12'x 16' space and they create the most innovative and creative dining room experience they can. Last year's event was so much fun and I can't wait to see what people come up with this time.

Also for the event, we created plastic butterfly's that went out to some of the top artists in the state and each person is creating their own butterfly and we will use them at Serving up Style! I am so excited to see what they create and so grateful to all the people who are making this event such a success. With the money and awareness that we raise, will all go towards finding a cure for Lupus!

I hope you all are avoiding the summer heat and are having healthy and happy days!! Take care my friends!!!

"In summer, the song sings itself."
- William Carlos Williams

Lonely Days

Have you ever noticed how much we isolate ourselves with this crazy disease we call Lupus? I've been noticing lately that I'm spending a lot more time by myself because it is so hard for other people to relate to my situation and how I am feeling. This isn't their fault or mine, it's just the way things are sometimes. I find myself choosing a warm bath over going out for drinks with friends because that's means I'll get a good night's rest.

You make these choices and as with any choice, there are consequences. The consequence of these choices is loneliness. I'm talking about that deep feeling inside like no one understands you and that there aren't enough tears in the world to make it better. Am I the only one feeling this or do some of you understand what I'm talking about?

I'm not trying to sit around and feel sorry for myself because I know that doesn't accomplish anything. I just truly have a hard time relating to other people sometimes. They can go running if they feel like it or go for a weekend away without having to worry if they've packed all their medications with them. There are so many people out there who are taking their health for granted and it drives me crazy. At the same time, I know that I was exactly the same way before this miserable disease hit me.

I have to say that one of the things that has been helping lately has been the online support group meetings that we've started on the Molly's Fund website. It's really nice to be able to sit on my couch in front of my computer and talk to people who have the same problems I do. There is something about the anonymity of the meetings that makes you feel like you can say anything and it makes you realize there are other people out there like you. If anyone is interested, we are holding the meetings each Thursday night at 6 p.m. PST. They really can make a difference on those lonely days. I hope to see some of you there soon and maybe we can help each other from feeling too alone.

"People are lonely because they build walls instead of bridges."
Joseph F. Newton

Seasons Greetings

It never fails the way that spring comes along with beautiful flowers blooming, the sun shining, and me laying in bed in pain. There are numerous studies out there that say that autoimmune disorders tend to flare at the change of seasons, but no one can ever tell you why.

I'd love to be positive and cheery, but the truth is that I got so exhausted trying to get ready this morning that I wound up taking a two hour nap and missing the appointment I was getting ready for. When you are dealing with pain like that it is hard to search for the answers to why you're hurting even though you desperately want them.

I trust my doctors and my advisers to tell me what is best for me, but sometimes it's just a matter of me figuring out for myself what is causing all the pain and fatigue. I'd love to tell you that I've had a great epiphany and discovered the reason, but the only thing I've been told is that it is the change of season.

We had our first day of spring last week, while here in Oregon that just meant more rain, in other places it means a big drop in barometer pressure and temperatures rising and the sun coming out more often. We're all aware that barometer changes can affect autoimmune disorders, but it still doesn't make it any easier now does it?

I have spent the last week in bed fighting fatigue and fevers with no explanation. My joints are swollen and aching so that every movement makes me want to cry in pain. The best explanation they have is that it's because the seasons are changing? Not good enough. Not good enough for me or all the other people out there like me who need better answers. Maybe someday we will get enough funding for research that we can actually discover things like what causes Lupus and how we can treat it, but until that day, I am going to continue to fight back and raise as much money and awareness as I can so someday I don't have to lay here and wonder why I am in so much pain.

I truly hope that your seasons change was better than mine and that this posting will find you in good health and you are pain free. Hang in there, we'll figure it out someday!!

"We must remember that one determined person can make a significant difference, and that a small group of determined people can change the course of history."
~Sonia Johnson

Questions

Do you ever wake up in the morning feeling miserable and hurting so bad that you start to ask yourself "what did I do to deserve this?"? That's the resounding thought that is going through my head today. I woke up in so much pain that it took me over ten minutes just to turn over and look at the clock. I'm 32 years old. Why do I have the body of an 80 year old person??

I'm well aware that none of these questions have answers but that doesn't keep me from asking them all the same. I've got a terrible cold right now, can't breathe, am coughing, have fevers, and am in so much pain, I wince every time I move. What in my life did I do to deserve something like this? Did I not pray enough? Did I not do enough good deeds? Why would someone punish people like this?

I believe in Karma and that whatever you do comes back on you, but for the life of me I cannot figure out what I did in this life or the last to deserve this type of life. I watch the world and see all my friends and family around me and their lives just seem so easy. How many challenges is a person suppose to take before they just give in and let the disease take over their life?

My last blog was all about fighting. I will fight against this, but it just gets so exhausting after a while and I just can't help but think about what my life might be like without this plague. Would I be happy? Would I be moving forward with ease? What would I make of my life then? I also know that there is no way to know what would have been or whether I would have taken it all for granted.

I do believe I am stronger for having to deal with this disease and everything that comes with it, but what exactly does strength do for you? I truly hope that all of you out there that are healthy never take it for granted because it is absolutely true that there is no better blessing than good health.


"The greatest wealth is health."
~Virgil