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Tales from a Hospital Bed

Posted Aug 24 2008 3:17pm

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

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