Count Your Blessings

When I was a kid, one of my favorite songs was from the movie, White Christmas, called "Count your Blessings". I think that those lyrics are so true and always stick in my head when I'm having a bad day. "When your weary and you can't sleep, just count your blessings, instead of sheep and you'll fall asleep counting your blessings." Whenever I'm having a really bad day or am feeling really frustrated, I always try to go back to those lyrics and remember the things I'm really lucky to have in my life. Those words can be applied to almost anything in your life and certainly in the life of a lupus patient.

All lupus sufferers have their hard times, and we all know how much we struggle just to get through the day, but we all have a choice. We can choose to be grateful for our friends and family, for the next door neighbor who checks in on you when your sick, or just the fact that there is a clear blue sky outside. We can also choose to focus on the fact that your back hurts, you have a rash on your cheek or that you are stuck in a hospital bed. These are the choices that we are faced with every day.

If you ask me, it takes a lot less effort and work to be grateful for the people in my life and the things with which I am blessed than it does to complain about my pain and drag everyone down around me. I honestly don't have enough energy these days to keep trying to do both, and today, I am going to choose to be the kind of person who's going to look at the positive things in my life. That may sound corny and like it belongs in a hallmark card, but it doesn't make it any less true.

When things are bad, and let's face it, we all have bad times, there are still options. You can spend your days being miserable and laying around glowering at the people around you. That's one choice. Another choice is that you could look at the fact that there are people around you who care about you and that are trying to help make things better for you. I'm not being naive and stupid, I know it's hard to focus on the positive when your legs are throbbing and you are stuck taking three pounds of medicine.

Nothing worthwhile ever comes easy. It's a trite saying, but that doesn't make it any less true. If you make the hard choice to focus on what blessings you've been given, I can promise you that your life is going to be much better than if you sit around feeling sorry for yourself. I use to be a singer and maybe why I tend to remember things in songs, but I think this tune is one worth remembering. You go ahead and count your blessings for a while, I think you'll see it makes life a little bit easier.

"Attitudes are contagious. Are yours worth catching?"
~Dennis and Wendy Mannering

To know or not to know?

I recently had a nice visit from some old friends. While talking with them over dinner, one of my friends talked about how she'd been having allergic reactions that put her in the hospital for several weeks where she almost died. She'd been forced to depend on huge doses of prednisone to control whatever it is that is going on in her body and all of us with Lupus can relate to that. She's had to go from doctor to doctor and they still didn't know what was wrong with her. Her doctor's are now sending her to NIH in Bethesda for a full week long work up. I had such a eerie feeling when she was telling me her story reminding me of how miserable those days are when you don't know what is going on in your own body.

I always thought that the day I was told I had lupus was one of my worst, but it's far too easy to forget that it actually was worse waking up every morning and not knowing why I hurt so badly and kept getting sick. Every time something new happens to me, I can never tell if it was better to know what is going on and prepare for it or if I was better off being ignorant. I suppose there is a grain of truth in that saying, "Ignorance is Bliss".

I know that part of Lupus is that it always goes from one organ to the next, but aren't you tired of waiting to wake up in the morning and see what infection you have or what organ this disease has made it's way to? I suppose this frustration might be because it has been so long since I've has a pain free day where I didn't feel crummy, but I'm always hesitant when I go to the doctor's office. Am I going to feel better knowing what's going on or is treating whatever comes next just going to make life even harder?

I don't mean to take anything away from all of you out there who are still struggling to find your diagnosis because I do understand that struggle and frustration. I'm just disappointed that, for me, the day I got diagnosed didn't necessarily make things better. Every girl has her trauma I suppose and maybe mine is because the doctor who diagnosed me told me in a very cold backhanded manner and then sent me home without explaining what it means to have Lupus.

You learn very quickly what having Lupus means and that is a sad fact. I know that there are those of you out there that live with this disease every day without it impacting your daily life and I am, truly from the depths of my heart, so happy for you, because that means that for the rest of us, there is still hope. I think that all lupus patients have to spend their life fighting, whether it's fighting the medical system, or fighting to get your loved ones to understand, but most of all I think we should all fight for hope. Hope is what makes every day worth waking up for and we should all have that.

Whether we know or don't know what is coming next for us, we should always search for that reason we get up every morning. Whether it's your husband, your child, or the 10:30 staff meeting, we all need something to look forward to and get up for every day. I hope you all find that today!

"I had the blues because I had no shoes until upon the street, I met a man who had no feet."
~Ancient Persian Saying

What's the word of the day?

Hi all. Sorry that it's taken a while for me to write anything. I'm still struggling with this crazy flare of mine and that takes most of my energy at the moment. I've had to move in with my parents for the interim because I'm so weak and on so many pain pills. The doctors are pretty sure that most of my pain is coming from my fibromyalgia. While it is a great relief that my lupus isn't attacking any other organs in my body, it's also a little bit frustrating. At least when the lupus is causing the problems there are treatment options. When they determine that it's fibro, it limits the treatment options to pain medicines.

The doctor referred me to a pain clinic, but the frustrating part with that is that it takes at least a month to get an appointment and even then you still have to go through an evaluation with a minimum of three doctors. Frustration really does seem like my word of the day. Why is it that when things are at their worst, the treatment always seems harder to get? I've gone through a pain clinic before. This isn't something new. I learned the relaxation techniques, I did the biofeedback training, I learned the stretches. They aren't working. I swear, I have really tried them all, but the pain is still there. What is going to make this one different? I'm at least being smarter this time. I'm only looking into clinics that use numerous anesthesiology options as well as the regular behavior modification treatments. Hopefully, that will make a difference.

I'm really lucky to have so many great friends and family members that are helping me through a tough time like this, but to be honest, I'm really tired of having to ask for help. Just for once, I'd like to be able to hop in my car and go pick up my own prescription or grab some bananas at the store. It's the simple things like that I always take for granted when I'm feeling fine. As it is now, I have to go through my schedule with my parents every day and they have to work driving me around to my appointments into their day. They are so amazing about helping and I truly appreciate every thing that they do for me, but I am so tired of having to depend on someone else.

I like being independent. I am a single woman with my own home. I take care of myself perfectly well most days of my life. That is part of what makes being so sick so frustrating. Not only do I want the pain to go away and for my head to get out of this pain medicine fog, I want my life back. I want the option of deciding to do something without having to depend on anyone else to accomplish the task. I think I've been pretty patient with asking people for help thus far, but it's been over three months now. I'm fed up, I'm annoyed, and I'm desperate for a break.

I want just one good day. It has honestly been so long since I've had a day without pain that I can't even remember what it feels like. I want to wake up in the morning and not cringe at the first bending of an elbow or knee. I want to get up, stretch my arms, and easily get ready for the day. I suppose that's a lot of wanting right now, but I really hope that someday soon it may happen.

For now, I encourage everyone out there to enjoy your good days and appreciate the freedom you are allowed. Lupus isn't a death sentence, that's something we all know. It's just a matter of whether you let it beat you or if you choose to keep fighting back. As for me, I guess I'm going to go take some more pain pills and continue fighting, because I know there are other people like me out there and that you are all fighting too. I wish you all a pain free day and good health.

"Laughter and tears are both responses to frustration and exhaustion. I myself prefer to laugh, since there is less cleaning up to do afterward."
~Kurt Vonnegut