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

Friends

I happen to believe that friends are the most important thing in life. Friends are the people, who on your very worst day, can still make you feel loved and appreciated. When I am sick and miserable, my first instinct is to curl up on the couch and hide in my house. My friends have a particular knack for when I'm not feeling well, I always get a phone call every few hours with someone checking in on me.

As much as my first instinct is to push everyone away and hide from the world, those phone calls remind me that there are people out there who are thinking of me and won't let me be alone.
Don't push the people away who love you the most when times get hard. Hold them closer rather than pushing them away.

It sounds like a simple concept, but I've heard more stories of Lupus patients who have lost their friends or their families because they've pushed them away. You will regret it. You will look back and wish you hadn't let your pain and aches make you not value the people in your life. They are offering to help and to talk with you because they care and that is what makes friendships so special. They have the magic power to make your life better at any moment just by making you smile. All you have to do is let them in.

I consider myself extra lucky because my friends were so frustrated that they couldn't do more to help, that they created this amazing foundation. They all put in hours after work and on weekends to make people understand what Lupus is and raise money so that someday we can find a cure for this crummy disease. That is true friendship. That is why I am such a blessed person, because I have people like this in my life.

I can't tell you how to find friends like these, because I'm still constantly amazed at how lucky I am to have them, but if you have people in your life who care about you, I suggest that you value them and thank them as often as possible for being your friend. Friendship is a two-way street and when your road is a little more winding, like a Lupus patient's may be, just remember how much you appreciate them meeting you half way. I love and appreciate all of the friends I am fortunate to have and I hope that you are able to do the same.


"The only way to have a friend is to be one."
~Ralph Waldo Emerson

The Pain of Grieving

To the average person, there is an obvious difference between emotional and physical pain. To a lupus patient, the lines between emotional and physical blur very easily. I'm sad to say that last month my father passed away at the age of 58. People always talk about the stages of grief, the crying, the denial, but what they don't tell us lupies is that we have to deal with not only the emotional upheaval of losing a loved one, but also the physical pain that grief can bring.

After hearing that doctor say my father was dead, I couldn't sleep for days. Every time I closed my eyes, all I could think of was that I wasn't going to see my dad again. I still don't think that part of it has sunk in, even today. While the pain in my heart seemed excruciating, my body was also taking a toll. The lack of sleep was aggravating my fibromyalgia and the stress of everything that we had to get done was increasing my pain levels. At that point, I don't even know if I was feeling the pain as much as I was scared to slow down and think about the fact that my dad would never be here again.

My family is incredibly close and that was really my saving grace in those first few days. Having amazing family and friends can really save you when you feel like you're world is falling apart. As much as my family encouraged me to rest and take breaks, I couldn't allow myself to slow down. I needed to stay busy, make phone calls, do anything that would keep me from dwelling on the idea that my dad wasn't around anymore.

Those things got me through the first few days, but they also came at a very high price. My body was throbbing in pain, my joints were swollen, but I still couldn't seem to make myself relax and rest. I was taking pain med's for the increased pain levels, but there's only so much they can do. In my head, I knew that I needed to slow down and take care of myself, but inside I really didn't care. I just wanted to get through the service and figured I'd deal with the rest after that.

There is an internal battle with lupus patient's who know what they are supposed to do to take care of themselves and what they really want to do so they can get through the day. I know better than to run myself ragged, but I didn't feel like I had any other option at the time. My physical pain became unimportant due to the emotional pain consuming me. I suppose that's the real question now isn't it, what is more important? The physical or the emotional? I don't have the answer to that one, but all I can say is that in my case, I ignored my physical pain in order to handle the waves of grief as they came. At the time, it seemed like the only option to get me through the day, but it definitely came with a price.

I have had three trips to the hospital since dad's passing and my lupus is flaring like crazy, but I am hanging in there. The doctors aren't sure when things will get back to normal, but who knows what normal is anyways? I miss my dad every day and I suppose I probably always will. The hurt gets a little less every day, but the pains in my body are still there as well. I guess that in the end, pain is pain and we all handle it the best we can. This is just one of the many challenges a lupus patient faces. Please tell all your loved ones that you care for them and I hope none of you faces the challenge of handling grief anytime soon.

"Pain is inevitable; suffering is optional."
~M. Kathleen Casey

Tales from a Hospital Bed

Hello my friends! I am so sorry that it's been so long since I've posted anything, but I have had one of the most miserable and frightening months of my life. I hadn't been feeling well for weeks and my lupus was definitely activated, but I had no idea how quickly things can go from bad to worse.

I flew to California a couple weeks ago to visit my sister and her family. We visit them often because we are all infatuated with my adorable niece and well, let's just say that the warm sunshine is definitely a nice change of pace from the gloomy Portland weather. I was doing okay on the flight there, my fibro was flaring a bit, but I was manging it okay. The next morning I woke up and went to lunch with my niece. We took her home for her nap, which of course meant it was nap time for me too. I laid on the couch and was hurting quite a bit from my fibro but was handling it. I didn't realize how much I was hurting until I realized I had tears running down my cheeks. I got up to use the bathroom, laid back on the couch and the next thing I knew, my hands were tingling. I told this to my mom and then my feet and hands were suddenly numb. I was so cold and had no idea why. The next thing I knew, my teeth were chattering so hard I couldn't talk. My mom told me my face looked gray and we decided we had to call the ambulance.

By the time the ambulance got to my sister's house, I was so scared and I could barely breathe because I was hyperventilating. I had never experienced this severe kind of pain and as you all know, that's saying quite a bit because we all deal with pain every day. When we arrived in the ER they immediately noticed that I had an extremely high fever and ran a battery of blood work. The UA they gave me showed that I had a bladder infection, but there was no explanation as to why a little bladder infection has caused such an elevated white blood cell level.

They ran antibiotics immediately and a pound of morphine to keep me from screaming in pain. I have such a crazy high threshold for pain medicine and it is really frustrating when the pain is that bad because it takes a lot more pain medicine for me than the average person to cut the edge off of the throbbing that was all over my body. It's always amazing to me that it's when you are in the worst condition of your life when people get stingy on things like pain meds. I'm not a drug addict coming in here drug searching, I'm obviously miserable and you still have to fight tooth and nail to get the pain shots. I'm sure you all know how incredibly frustrating hospitals can be.

This was honestly the first time that my lupus has got me admitted to any hospital for an extended period of time. I've been very fortunate to have good doctors here in town that can usually keep things from getting so out of hand, but I was in a hospital in a town where I didn't know a single doctor and that made this flare all that more difficult and scary.

I'm not too proud to admit that I was pretty scared for a while. I had no idea what was going on and to be honest, still don't. I was in a hospital that was old and out of date. I was so miserable and trying to sleep all the time because anyone who's had to stay in a hospital knows you never get any rest at the time in your life when you need it the most. It wasn't until the third day there that when we turned on the lights, we saw that there were bugs crawling in the light fixture. I've never been so grossed out in my life. There wasn't a single rheumatologist on staff and nobody knew what was happening to me. I was totally trapped and didn't know how to get out of there.

On the third day there, they finally decided to start a Medrol pack and that helped within a few hours. I was so desperate to get out of that hospital that I lied and told them my pain was all better just so I could go home, take a hot shower, and sleep for twenty hours straight. They agreed to release me and even though I could barely make it into the car, I did it anyway to get away from this terrible place. The doctors were really trying there, but they had no idea what to do with a lupus patient.

I got home, took a shower, and took enough pain medicine to make me sleep for fourteen hours straight and when I woke up, I still hurt, but I felt so much better after getting rest. I got up and laid on the couch while my sister, brother-in-law, and niece came over to see me and were happy we were all home. As I was sitting there, I was becoming more and more uncomfortable, but still didn't want to think things were getting dangerously bad yet. Hours passed and my pain level was getting higher and higher by the minute. I finally went downstairs and in a pain delirium starting packing a bag of everything I wished I'd brought with me to the hospital last time. My mom came and checked on me, and saw that my face was that nasty shade of gray again and we all got in the car and drove forty minutes to Cedar-Sinai hospital because we wanted to go to a better facility and I had once met with a doctor from there.

On the way there, my pain level grew so out of control I could barely breathe. It was foolish of us to continue driving there and in hind sight would have stopped a block away and called for an ambulance, but we didn't think that far ahead and went in to the ER with me in a wheelchair writhing in pain. They took my vitals and then sent me to the waiting room where we sat for over two hours while I cried, shook, and moaned in the most excruciating pain of my life. That statement alone is pretty incredible because as I already said, we all live with pain every day.

We arrived in the waiting room at 4:00 p.m. At 6:45, I got my first pain shot. At 2:45 a.m., I was finally admitted to a room upstairs. At 3:00 a.m., they started a dose of antibiotics and I had to hold my arm perfectly straight in order for it to work. At 4:00 a.m. I finally fell asleep. At 4:45 a.m., the phlebotomist showed up to take my morning blood work. At 6:00 a.m., the nurses came in, opened the shades and took my morning vitals. At 7:30 a.m., I first met with the doctor assigned to my case. I was so deliriously tired, I could barely remember what I told him. I didn't get a chance to talk to him again until 7:00 a.m. the next day. I can't imagine how they expect you to get well when you can barely focus on what is happening.

I spent four more days in the hospital during which they never did discover anything other than a bladder infection that was causing my pain and fatigue. I finally called my doctor at home and had them fax her my results. Within twenty minutes, she could tell me that I had a severe kidney infection and the infection has infiltrated my blood so I was septic. They continued the antibiotics and I finally managed to control my pain with pain med's rather than the morphine shots. That was a week ago and I am still left laying in bed all day taking med's every four hours.

How is it that I can stay in the hospital for over a week and they can't discover anything, but my doctor can look at the test results and discover what's wrong with me in twenty minutes? There is something in this hospital system that is so incredibly broken. I hope you all never have to experience it, but if you do, fight for yourself. Don't let anyone tell you there's nothing wrong with you when you know that there is. There are people out there that can help you and find out what's wrong, you just have to find them.

I was lucky, I had an amazing set of parents, friends and family that were all willing to fight for me. I appreciate every warm wish they give me, but after all the hospital visits, shots, IV's, and tests, I'm still in pain and miserable. I never truly understood what a flare meant until the last few weeks.

I hope that you never have to experience this, but if you do, remember that you know your body better than anyone else. They are doctor's, but you know you and trust that. I'm going to go sleep and recover, but I hope that you all are having a pain free day and taking care of yourselves.

"It is in moments of illness that we are compelled to recognize that we live not alone but chained to a creature of a different kingdom, whole worlds apart, who has no knowledge of us and by whom it is impossible to make ourselves understood: our body."
~Marcel Proust

Doctors are not God's

I've been thinking a lot lately about the Kylie Minogue quote this week about being misdiagnosed. In regards to her battle with breast cancer, she said, "This is an opportunity for me to say something that I have not said before, I was misdiagnosed initially. So my message to all of you and everyone at home is, because someone is in a white coat and using big medical instruments doesn't necessarily mean they are right." I could not agree more.

If I had given up every time that a doctor told me there was nothing wrong with me, I would probably be dead by now. It is amazing to me how doctor's will look at your chart rather than listening to you and jump to the easiest diagnosis so that they can move on to the patient in the next room. It is so hard for anyone suffering with an invisible disease to find a doctor who will really stop, sit down, and listen to your plight.

It took me three years to find the right doctor who decided that even though all the tests said there was nothing wrong with me, that I couldn't be feeling this bad if nothing was wrong. I had to fight every specialist I met with, every nurse who walked in and said you were looking great, what could be wrong with you? Fighting is a daily part of life for Lupus patients, but it's unfortunate that the people we look to for guidance and assistance make us fight harder, not less.

I urge every patient, not just lupies, to ask questions of your doctor. If you don't believe deep down in your gut that what they are saying is right, get a second opinion! This is your life, your body and you know it better than anyone else. Stand up for yourself and get the right diagnosis. It could literally save your life.

"Everyone in the world is constantly fighting an internal battle. A battle between what the brain know is right and what the heart knows it wants."
~Oprah Winfrey

Frustration

It's incredible how much frustration plays into the life of a Lupus patient. I'm sure people may feel sorry for you, or wish that you were there at that party, but what they rarely understand is how much I wish I was at that party. I'm going through a pretty bad flare right now which makes leaving the house hard right now.

Laying around the house watching TV usually sounds great when you're crazy busy at work, but to be honest, it gets old really fast. I'm beginning to wonder if the rest of my life is going to be spent on my living room couch. I have great friends and family that support me and run this incredible foundation with me. I so wish that I could be a better contributor to their work. I would love to be digging in and doing the hard work, but that never really seems to even be an option.

Being extremely frustrated also comes across as snippy or rude to the few people who really are trying to be kind to you. I can hear my voice getting short with people and cringing at my lack of ability to stay calm and cool. I hurt, I'm tired, and I can barely move without pain radiating through my body. All of that makes being a good friend or family member harder than you can ever imagine.

I so wish I could babysit my niece and take her to the zoo and carry her through all the exhibits. I've yet to ever be physically capable of doing this and it makes me both sad and frustrated at the same time. I want to pitch in and take her for the night so her mom can get some sleep, but I can't do that either. I know that I should stop dwelling on the things I can't do and do the things that I can, but when your options are limited like mine are, that gets harder and harder.

I'm going to try and buck up and be a good sport, but I have no doubt that all you lupies out there no exactly what I'm talking about. Hang in there my friends and I will do the same!