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

Caught up in the Craziness

There have been so many things going on, I kind of have just let myself get caught up in the craziness. It's been exciting times for the foundation. Molly's Fund is having it's first event in September called "Serving up Style" and it's a group of designers coming together to raise money for lupus. They're coming together into six design teams and each team is going to create a dining experience. These displays will be featured at the Home and Garden Expo the second weekend in September.

There has been so many things to do to get ready for the show. We are putting together marketing materials, creating educational displays and a ton of other things. The awesomest (is that a word?) thing about our board is that everyone jumps right in and does their part. Each member of our board has their own specialty and is always willing to pitch in when the time comes. While I could sit here and complain about how crazy my life is and how exhausted I am, to be honest...I love it!

The weather is finally warm here in Oregon, I'm coming out of a flare and am feeling good (knock on wood). It's such a pleasure to be pitching in and doing my share of the work. I think that may be one of the worst parts of feeling sick, having to sit on the sidelines when you know that you could be helping if you were well. Feeling useful is the best medicine as far as I'm concerned.

That's not to say that I don't have my limitations. There have been a few days where by the end of the day I'm coughing a little and spiking a fever. It just means I have to rest a little bit more the next day and keep track of my energy. I've never been all that great at pacing, but I'm getting a little better at it each day. I can schedule two appointments top, three if I've been resting the day before. Even with all of that effort, there are always things on my to do list I can't get to.

I should know better than to even make to-do list's by now, but with the fog head the medications give me, I don't really have a choice. It used to drive me crazy not being able to check everything off my list at the end of the day, but at this point it just seems like such a waste of energy to worry about the little things like that. It sounds cliche, but it's still true. I'm off to get back to my to-do list for the day, but I wish you all pain free days and hope you're enjoying the summer sun.

"In times of great stress or adversity, it's always best to keep busy, to plow your anger and your energy into something positive."
~Lee Iacocca

Shoo Flu

If I thought a blue foot was a problem, I had no idea what I was talking about! It has been a pretty miserable week, but I am happy to say that I think I may actually be on the road to recovery. I was feeling pretty down after a week of bad news after bad news so my parents packed me up and decided I should come stay with them for a few days to pick up my spirits. I suppose I could have argued with them over it, but to be honest, being taken care of actually sounded good for once at that point.

I think that mothers must have some kind of instinct about their kids being in trouble because the day after they brought me up to their house I got so nauseous I thought I was going to die. I am so busy dealing with my Lupus symptoms and medications that I really forget how miserable some thing as simple as the stomach flu can be. My doctor's office was really great about getting me compazine right away, but it was still a pretty crummy few days. I think it took me three days to finish a single pack of saltines. I know I'm really sick when I can't even think about food, which is usually my favorite thing!

The really hard part about getting sick at that point is that we were supposed to be heading down to Southern California so we could be close to my sister because my new nephew is going to be born any day now. I desperately wanted to be there and be able to help her out with the new baby. Bless my parents, they got me all packed up, ordered a wheelchair and somehow managed to get me on the plane down here. We made it in one piece and although it's taken me a few days to recover from both the travel and the flu, I'm finally starting to feel like I'm back to myself. Unfortunately, being myself means that I'm almost always in a flare! I'm pretty used to it occurring every few months, but I was really hoping that it wouldn't happen this time.

When my niece was born, I was in the middle of a miserable flare and I wasn't strong enough to hold a tiny little newborn for more than a few minutes at a time. I had really been looking forward to being able to be more helpful this time and not be having to take any attention away from the baby. I'm still holding on to hope that I'll be getting better soon, but it's just another reminder of how frustrating it is to have absolutely no control over your body.

It's so maddening to do everything the doctors tell you, follow every advice you get, and work incredibly hard to manage your stress and life so that you don't exacerbate things and still get sick. I have upped my prednisone, I've paced out my life so that I don't do too many things in one day, I exercise in the warm water to keep my joints moving...so what am I doing wrong?

I suppose I could ask that question forever and never know the answer. I can only do what I can do at this point and hope that somehow my body starts to give me a break at some point. Honestly, I have to imagine that my body is as sick of this disease as I am. It takes so much work to fight back at this disease every single day. I think that we all deserve a good day off from our disease every once in a while and when yours comes around, I hope you enjoy every second of it. I'm sending wishes for pain free days to all of you!

"Bombeck’s rule of Medicine: Never go to a doctor whose office plants have died."
~Erma Bombeck

Happy Memorial Day!

Happy Memorial Day one and all!!! I hope that you are all able to get out and enjoy the sunshine and have a great barbecue. I will be trying to take my own advice, but I am embarrassed to say that I will most likely catch a movie or work on a puzzle. I always feel like I have to try and make myself get out of the house once and a while. I think being sick so often makes being a homebody become the norm rather than the occasional.

I have had quite the odd medical week. I noticed last weekend that one of my feet had a bit of a bluish tint to it, but didn't really think much of it. It wasn't until I made my weekly trek to my fabulous acupuncturist and she was really concerned about how swollen and blue my left foot was. Leave it to me to not get both feet swollen or even better, not have any blue appendages at all, but since it was me, it was just a given that I was going to have something odd, unusual, and undiagnosable. Can you guess what the doctor's treatment for my blue and swollen foot was? Socks. Really? Socks?? I guess that's what I get for wearing flip-flops all the time. It just seems so weird to me that if they think I have Raynaud's Syndrome, wouldn't it be in both feet?

As if I hadn't had enough bizarre and crazy health crisis for the week, I went to see an infectious disease doctor because I had been struggling with a case of thrush for several months. They took a culture, ran a million of the same blood tests they ran years ago when they were trying to figure out what was wrong with me. The doctor has pretty much no idea what is going on with it, but I have to give him credit because he did admit that and went to a bunch of other doctors, including an oral pathologist, to try and find the answer.

Just in case I didn't get enough weird treatment tips for the week, the oral pathologist just thought I had too many skin cells growing on my tongue and that I should take a table spoon and scrape it three times a week. Can you even imagine carrying a spoon around in your purse so you could scrape your tongue wherever you are? I suppose that at this point, nothing really shocks me anymore. The infectious disease doc is now planning on scraping my tongue with some kind of knife next week so I hope that he has steady hands because I'm pretty sure I can't put a band aid on my tongue.

I suppose the point of this whole rant is that even when you get crazy news and think nothing more can go wrong with you, watch what you say, because just around the corner may be a doctor telling you to wear wool socks in the summer. :-) I could have cried, thrown a tantrum, or gotten really depressed about all the bad news this week, but what good would that do me? I suppose I have to handle it with laughter because, for me, the other options aren't going to make things any better. I choose to handle things with laughter rather than sadness. This choice may not make my foot not be blue or make my thrush go away, but I still "feel" better with a smile on my face. It's not an easy choice or something that I can always pull off, but it's a deliberate alternative to a tear.

I wish you all laughter and sunshine on this holiday weekend and thank you all for listening to me.


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