WE NEED TO FIND A CURE OR AT LEAST BETTER TREATMENT OPTIONS

Lupus has been kicking my butt this week I have been trying not to surrender but I find myself spending a lot of time in bed on the "Big Gun" meds. I had to put out the white flag.

This flare started a few days ago with chest pain which turned out to be costochondritis.

Basically Costochondritis is characterized by pain and tenderness in the upper chest. This pain may be sudden, sharp and fleeting or may be a dull ache that comes on slowly and lasts for hours or days. Certain activities, such as deep breathing or pressure to the affected area, worsen the pain. It may radiate widely or remain localized. It can mimic the symptoms of heart attack (myocardial infarction, MI) in many patients, who thus may get a work-up for MI.

Here some links describing it. Many of you with Lupus or other chronic pain conditions know all too well what this is like.

http://www.mayoclinic.com/health/costochondritis/DS00626

http://yourtotalhealth.ivillage.com/costochondritis.html

I ended up at the local ER. They did all the tests to rule out a heart attack. The EKG and heart enzymes were great. I was not having a heart attack. Deep down I knew that was the case. I followed my doctor's instructions and went to the ER because, he said, You ALWAYS have to have chest pain evaluated.

But, and please don't misunderstand because I DID NOT WANT IT TO BE MY HEART, once it was established that my heart was not the cause, the attention they gave me slowed down. I know what the treatment for costochondritis is. Just make the patient as comfortable as possible. Which includes strong pain meds and a bag of solumedrol. I got the pain meds but no solumedrol. I know that the solumedrol is the most important part of the treatment, especially when given via IV. This med (which is prednisione) almost immediately helps with the inflammation. After my first pain shot through the IV I waited, and waited for it to help. Nothing. It was demerol. I was a good girl and waited the appropriate amount of time before asking for something stronger. I was told that for a normal person the demerol should have brought my pain level down. Don't they know that a Lupus patient is not NORMAL? Finally I was given Dilaudid. Which did the trick for about an hour. If they would have listened to me and given me the prednisione the combo of the two would have helped me enormously. But what do I know I am not a Doctor God. I have only been through this for more times than I can count.

Without naming names, I have to tell you that the local hospital here in Easley is good. It's good when you have a sprained ankle, a broken something or even pneumonia. They know how to fix those things. Lupus is an unfix able condition. Especially, despite the sweating, I looked fine. I was actually told by the doctor that because I know I have Lupus that I should not have come to the ER. At this hospital they do not have the capabilities to run any of the antibody tests. They have to send the blood out. This hospital was the closest. The hospital in the "bigger city" is so much better and I should have taken the time to go there. It is a major hospital complex and they take these things a little more seriously. Next time I will know better.

As of now, the pain is pretty much all over. Especially my hips, neck, back and knees. My sleep is horrible. My body feels like a blob of jelly. The fatigue is paralyzing and my GI system is doing flip flops. I keep a bowl at my bedside because when the nausea set in, I have little time to make it to the bathroom. My head is foggy.

I am so thankful for my hubby and children they know what Lupus is all about and take very good care of me when I flare this long and hard. Mom has brought over some meals to help. I am so thankful for that. Most of my family calls to check up on me.

Here is another web site that I just love. It is written by a lovely woman named Christine who also suffers from Lupus. It is chock full of information. I have linked this site before, but here it is again. I suggest this be the first place one goes to learn as much as they can about Lupus.

http://butyoudon'tlooksick.com

On this website, she shares a story called The Spoon Theory. Here is a portion of what she writes....

The Spoon Theory
by Christine Miserandino

I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn't seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.

As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.

Here is the rest of the story....

http://www.butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf

After you read this you will understand when I say that "I AM OUT OF SPOONS!"

I haven't had a flare of this magnitude in quite a while. I am still not feeling any better and suspect that this will last a while and just need to run it's course.

Tomorrow I have my two month check up with my rheumatologist. Maye he will prescribe a short course of prednisione. I have to tell him that taking the heavy duty narcotic meds are making me feel worse.

The good news this week is that I have finished all the testing on my kidneys. Still waiting for the results of the 24 hour urine catch, but I was told that my kidneys are fine. There are no words to explain how relieved I am at this moment. Kind of makes the flare a piece of cake knowing that Lupus has not gotten to my kidneys. Thank you Lord.

Just one final note........ Please continue to keep me in your prayers. Also, keep those who are researching and working on new treatments or dare I ask a cure in your prayers, as well.

Thank you.