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