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

New Years Blues

Happy new year to one and all. I hope that you managed to survive the holidays in good health. I had a fabulous holiday with my family down in California, but that's not to say that it didn't come with some painful trade-offs.

If you know me well, you know that I adore my niece and nephew and will take any opportunity to spend time with them. On this last trip, I was lucky enough to have them almost every day we were there. While I love being the fun aunt and doing projects with them, I was really dissapointed when I started feeling bad and knew there was something wrong.

Of course I was out of town when all of this happened so there was no way to go see one of my thousands of doctors, but by the third day of struggling to keep up with the kids, I knew I had an infection and called in to a doctor in Portland. They were kind enough to phone me out some antibiotics which arrived just in the knick of time because I'm pretty sure I was only a few hours away from an ambulance ride at that point.

Christmas eve was spent having a wonderful dinner with my family and then opening presents with everyone. While I had a great time and loved seeing the kids have so much fun, I was also sweating with a fever, had severe back pains from the kidney infection and was having heart palpatations as I watched my niece and nephew open their gifts. Of all the ways I imagined my holiday going, this was my least favorite option.

My family is so supportive and just tried not to notice when I had to change clothes three times during dinner because I had sweated through them and let me lay on the couch while the gifts were open, but damn it, I really wanted to be sitting there with everyone feeling great and enjoying every second instead of just getting through it.

I know that whining won't make things any better, but it is still very frustrating to have the important memories in your life tainted by this crazy disease. Lupus can take over your life if you let it and I am determined not to let it take mine. There are still days where that fight is harder than others, but if you see the good things around you and focus on them, it does make it easier.

I truly hope that everyone else had a much healthier holiday than mine and was able to spend it with your family and loved ones. My resolution this new year is to never stop fighting back against this disease and I hope that you don't either!

"Perhaps the best Yuletide decoration is being wreathed in smiles."
~Author Unknown

Seasons Change

It's that time of year where the leaves change their color and are falling to the ground and the air is so beautifully crisp...and I'm hating every moment of it! I hate having to even say it, but this cold weather is going to be the death of me and as gorgeous as it is, my body feels like it's on fire.

The cold air and crisp wind have an unbelievable way of chilling me to the bone in less than three seconds. I've bundled up, wore my wool socks and dug out my turtlenecks, but no matter what I do, that chill always finds it's way in. I do my stretches, I swim at the pool, I take my anti-inflammatories...how else do you fight the change of season?

It's one of the most frustrating things on the planet to be feeling fine last week and having a wonderful Thanksgiving and waking up this morning and not even being able to roll over in bed because it hurts too much. I know that it's the fibromyalgia and there isn't anything I can do about it, but it is the most maddening feeling knowing that I can do as many stretches as I want and take a zillion pain pills, but that ache in my bones isn't going anywhere until spring comes around.

Is it even possible to be angry with the weather? I swear that if I ever run into Mother Nature, she and I are going to have one heck of a drag-down street fight over this crazy cold weather. I know it's that whole circle of life thing, but if she could just tone it down in the general vicinity of all fibro patients, life would sure be easier! :-)

"Weather is a great metaphor for life - sometimes it's good, sometimes it's bad, and there's nothing much you can do about it but carry an umbrella."
~Pepper Giardino

Serving up Style and lot's more!

Hello all from the first annual Serving up Style event here at the Portland Fall Home and Garden show. It has been a crazy month filled with a lot of work and stress, but it was all worth it because we have finally produced our first annual fundraiser for Molly's Fund.

It was almost three years ago when we first came up for the idea for Serving up Style, but then the economy tanked and we couldn't find sponsors to save our life. Thankfully, we were introduced to Terry O'Loughlin, who produces the Fall Home and Garden show here in Portland and he loved the idea of us being a part of their show.

For those of you who don't know, Serving up Style is a design event that features six of the top design teams in Portland, Oregon. They are competing against one another to create the most lavish, creative, and exciting dining room experience possible. In my wildest dreams, I never imagined that it would be as gorgeous as it has turned out. These designers put their heart and soul into these displays and they look amazing.

We've also been really fortunate to be featured on most of the news stations here in town so that is really helping bring people into the show and to give us at Molly's Fund a chance to teach people more about Lupus.

I have to admit that standing on those concrete floors for hours on end is kind of killing my body, but I'm trying really hard to take breaks and pace myself throughout the day so that I don't get too sick by the time the weekend is over. It is worth it though each time a person stops to ask us what Molly's Fund is or if I could tell them a bit more about Lupus. It's not every day that I get to reach out to that many people at one time and feel like I'm doing something good and productive.

This weekend also is exciting because we are launching our new product, Molly's Med Minder. Molly's Med Minder is a personal health record that helps you keep track of all of your health information in one easy to grab binder. I had been carrying around this old raggedy three ring binder for years to all of my doctors appointments and it occurred to me that maybe other people might need to organize their health information too! We've been working on it for almost a year now and I am happy to say that you can purchase them this weekend at the Home and Garden show, but also on our website at: http://mollysfund.org/resources/store/.

That's all I have for the moment, but I really hope that some of you can make it out to the show and check out our Med Minder on our site, I think you'll really love it! I wish you all pain free days and healthy nights!!!


"Every day may not be good, but there's something good in every day."
~Author Unknown