Today is a good day

I feel slightly back to normal for the first time in weeks. I woke up refreshed and had some energy. I am starting to see the corner of which I am about to turn. My dad, step mom and god father visited yesterday and made me laugh. All good in the hood. It is great to see relief on Doug's face so he can focus deeper on his creative endeavors. He has been working so hard and is truly a trooper. At least he is sleeping now. No hospital staffers popping in all hours day and night with lights on full blast and speaking loud as if we are deaf. What is that all about?

So for those of you faint of heart or who have a hard time hearing about medical issues or pain please do not read this entry. I am writing this bog for many reasons: To keep loved ones informed, to help spread the word about the importance of finding a cure, raising awareness and writing a book. I would be untrue to not fully explain what is going on in an honest way. Polly Anna is great for those who need protecting but the truth is what heals. I need to express what I have been through and continue to experience for the record and to help go through the healing process on every level. So hold your hat it is going to be a bumpy read. don't forget this is an online journal.

First off the surgery was easy and went quite well. My left hip received it's third metal acetabulum (ball and socket). The post is still doing well and in tact. The surgery was four hours of painstaking dissection and removal of little metal shards and a large prosthetic with screws and all. Scar tissue was also removed and some calcium deposits filed down. I do not have a butt now, that's one OK thing. They had to change the position and give me an extra 3/8 of an inch to even out leg length which has already stopped lower back pain and sciatica pain. I was awake with a local anesthesia and epidural. The surgeon, who is very wise and brilliant had to tell me to stop asking so many questions so he could focus on the surgery. I read the report and it was very long and detailed. Quite the carpenter !!!! I wear a full leg-waist brace to hold everything together for another month. PT is very simple for now for fear of dislocation and damage to other bones. As soon as I can swim I am in the pool-lake for a spring-summer training session. The pain is very tolerable as long as I use the walker like a good girl. So that part is all good news.

The Bacterium they found inside the hip called Propionibacterium acnes which is a skin infection that could have been in there for a long time or could be a contaminate??? We still have to hit it with the heavy antibiotics as Doug explained in order to avoid further spreading into blood stream, joints and heart. I did not tolerate the first three antibiotics they tried so we will try a fourth one this week called Daptomycin which is a once a day IV through my permanent PICC(port). "Dapto" is a derivative of soil. The side effects I experienced from the previous antibios started with chills, fever spikes as high as 104, lupus flare, slight delirium, heart irregularity, dehydration, muscle weakness-pain, extreme bone pain, heart murmur, circulation issues, freezing feet and hands, lack of appetite, acid indigestion, red hot face, pruritic hives-rash, sweats, irregular vitals, lack of urination, burning upon urination, diarrhea, nausea, constipation, throbbing headache, ringing and pounding in ear, brain numbness, lethargy, malaise, muscle cramping and plain old exhaustion. I am writing about this because it could save someone's life who is experiencing some of these symptoms on antibiotics and not know enough to get help. I also want people to understand why Douglas is beside himself and stressed because watching someone you love go through these things is down right helpless torture. He was with his dad in the last days of his life with terminal cancer and he has supported me for 17 years but it never gets easy. I watched my mom and grandma go through it as well. I also was with my best friend, Lainey, while she lost her battle many years ago and still shed tears for that sweet and lovely young woman, friend,daughter, wife and mother. If I can put a human face to this disease and all it's ramifications then I have succeeded. I will be giving a testimonial in May for University of Michigan Lupus Program so we can encourage people and organizations to donate for research. If you are interested in this let me know. Go to www.lupusadvocacy.org and see the links page for further details. This is the least I can do.

On a positive note I feel upbeat today and have faith all is well and as it should be. Life has a way of working out perfectly if we allow it to flow. Let the miracles in the unexpected shine through in all you do. I am grateful for the opportunity to share this in a deep and meaningful way.