Going to the Restroom on Your Own........

As I laid flat on my back for 6-hour following my kidney biopsy I had a lot of time to answer e-mails on my work BB and think about where my life has been. First of all I can appreciate being able to go to the restroom on my own. You can't get up after having this procedure do to hemorrhaging, so either you don't go or use a bedpan. I opted to wait :)

Over the past few days I have met people or had friends who stated 'you are so positive considering all that is going on with you both medically and personally, but you still maintain a glow and a upbeat attitude'. People with Lupus and Fibromyaglia must keep positive family and friends around you because life is too short to be 'flaring' because of negativity. I'm happy to be alive and only have a few 'bad' days. It could always be worst.

Always thank your higher power for what you have. I do it everyday.

Down2earthlupis

My 17th Surgerical Procedure.........

It's almost 1am on Friday and I've been awake since Tuesday evening. What for do you ask? Because I'm nervous about what this kidney biopsy will bring. I remember when I was put on Cellcept when I first went into the early stages of kidney failure. I was totally against it. Now that I'm on the max dose of 3,000mg and my kidney's aren't making the progress that my rheumatologist and nephrologist wants, so at their urgency I'm getting another kidney biospy and start chemo therapy ASAP.

As I have reflected over this period in my life, I've realized that I've had 16 surgeries and procedures in my lifetime with the majority of them happening after my initial diagnosis in 2006. I'm a little scared and relieved to "really find out" what is going on with my body. Lupus patients can go through periods of remission and just like that they are flaring again. I hope and pray this is what is causing my extreme flares lately. I would rather know now so we can come up with a plan of attack with my 15 speciality doctors.

I better get a few hours of sleep before surgery......

Down2earthlupie

My World....

This week was quite interesting. I learned that my gastroenterologist wants to do two procedures ASAP in addition to my kidney biopsy. A colonoscopy, my 3rd one within a 10-month period, my 5th one in 5 years and an endoscopy. I guess it might have something to do with a 10lb weight loss within 9 days, vomiting four times in one day and an increase in bowel movements.

I better enjoy my 4th of July girl’s weekend to Vegas since I will be under anesthesia three times next week between Tuesday and Friday. My girlfriend from a Czech Air Force Public Affairs Officer asked during our course “What is this that I hear about the Chippendales?” And now I’m on my way to Vegas for the 4th time this year. So need to have a little bit of fun before the surgeries, procedures and chemo.

Lupus can cause extreme swelling of the joints and the organs. Some people get both whereas others have one or none. I’m the lucky one, I got both. I’ve got a plural effusion, swelling around my kidney, heart, lung and liver. I’m seeing a pulmonologist for the constant shooting pain in my lung when I breathe, cough, yawn, sneeze of laugh. She did give me some good news that she had a patient that had chemo treatment five year ago and the lupus is at bay and they are on minimal lupus medication. She said all the swelling, inflammation and other lupus symptoms should go away with the chemo therapy. I start my first round after I return from my trip to Germany. I’ll keep you posted.

Down2earthlupie

A Night in the ER :(

Well I spent 4-hours in the ER and didn't get the treatment I needed. I've lost 10lbs in 9 days due to some serious stress during the last week and a half. I've had gastro problems constantly for about 18-months, but the last couple days has been to the extreme. I got a referral to a specialist and when I called to schedule an appointment she was maxed out on patients my type of insurance, but I was told if I went to the ER where the doctor is on-call then there would be an exception to the policy. Besides the gastro problems I was seriously flaring due to undo stress.

After a long day at work I packed my bag, grabbed my school books and some snacks and I was ready to settle in for the night. The ER doc listened, but he didn't "listen". I've had 4 colonoscopies in the last 5-years, with two having pre-cancerous polyps. My dad's side of the family have mostly died due to colon cancer. After 4-hours he told me that I "probably" had a stomach virus......go figure.

I had a photo shoot at work this morning and I used the afternoon getting a new gastro referral. I'll be since on Tuesday, thank GOD! I have 14 speciality doctors and this is the first time I've had a problem like this, but you have to live and learn and not let it get to you.......

Down2earthlupie