sometimes emotions get the best of us

During this entire five weeks of ups and downs due to "infection" and antibiotics it finally got a hold of me. I do not cry much or get too upset. I tend to care more about others feelings than my own, but last night I broke down like a dam breaking under pressure of rushing waters. I am exhausted, frustrated at the whole situation and feeling helpless, which is rare. I am usually the advocate helping patients deal with this stuff not the other way around. Humbly I look back and see Douglas and I have not had a break from the stress of it all. In a week he will be in NC working 16 hour plus days and I will be here on a new antibiotic-homebound and weeks behind in physical therapy.

I keep waiting to wake up and feel good but after an hour or two of feeling good I slide back down. No particular reason I am just not quite right. I was feeling so good days after surgery and now I feel weaker than I have in a long time. It is not anyones fault but there does seem to be some issues with communication and understanding of my total condition by those who do not see many lupus patients. It is a difficult disease. my lupus Dr. is out of the country which adds to the concern.

I also just opened a letter from Home-Med telling me I received a recalled batch of antibiotic "Vanco" the week I went to hospital. That could be the culprit of all the illness since that time. it would explain a lot. This would be the second time I have taken recalled meds with horrible side effects. Can you understand the frustration? Sorry to whom it may be aimed but this is a life. A human life and not a number or statistic. The human element is not supported in most medical situations because of the failed system with Dr.'s and nurses who are wonderful and caring but only have so much time with too many patients in their care. More patients die while in the hospital from medical mistakes than any single disease. Check the stats on Oprah.com(do not quote me ask Dr. Oz). This is why advocates are necessary. Us patients and worried family members are often considered a pain or high maintenance yet when a physician has an ill loved one they are lions. We as patients must take our lives into our own hands and ask as many questions as possible. Knowledge is power and power heals. I am using this experience to help my situation and others. I still feel UM is one of the best and I will continue to be a strong advocate and spokesperson for the lupus program, but I will roar !!!!