Friday, May 8, 2009


I'm going to be totally cured from all my illnesses on May 12, 2009. You might be a little skeptical at this point, but don't be. No need to worry........I know what I'm talking about. The reason I am so confident is because I will be on a beach that day. It's only a Texas beach but it's still a beach. I will be walking in ocean water and sand, which is what I want to do every day of my life. And if you think only having 8 toes will stop way! I am so excited that I can hardly wait. I think the ocean is a cure all for any problems anyone is having. You just have to believe. So even though I only get to spend part of one day there I will come home feeling 100% better. I still have a problem with denial and reality. But Megan, Tanner and I are flying to San Antonio tomorrow (compliments of Ben). I can't wait to see Abby and Olivia (my adorable little red heads). The beach is a 2 1/2 hour drive from Ben and Mary's house but that is just fine with me. To get to watch the two little girls and Tanner play in the ocean will be the best day ever. Being on an airplane with Tanner may be the worst day ever..........for all the passengers on the flight with us. He tends to be very LOUD when he is excited or confined to a small space (and he never quits talking EVER).

So here's the real health update (no denial): Steroids have been amazing as far as my autoimmune disease goes. The severe pain I had for months is about 80% less than it was. I still have some issues with pain if I walk too much or try to do to much without resting, but I feel like I actually have a life again. My sed rate has dropped from 93 to 53, still too high but much better. Unfortunately the side effects of the steroids have been a problem.
First: They messed with my blood sugar on day one of taking them, but with some medicine changes that is back in total control.
Second: They caused fluid retention which caused my blood pressure to get too high. I have been working with my nephrologist (kidney doctor) to get that back in control. She has made several medicine changes and the BP and swelling is better but not back to perfect yet. She added more meds when I saw her Wednesday. My GRF is 19, it was 20 a month ago so my kidney disease seems to be staying in Stage 4 , at least for now.
Third: Since steroids can mess with the immune system, I started having fevers again about the 4th day of taking them. I saw my PCP on the 10th day of fevers. She put me on a high dose of Clindamycin and the fevers stopped on the 3rd day of taking antibiotics. The antibiotics cause nausea which is no fun but I can deal with that. Of course my labs proved I had an infection because my white count and my absolute neutrophils were both high.
Fourth: My anemia got worse, as it always does with infections and so I had to get IV iron on Monday for that.
Fifth: My fevers have been back since Monday night so I either have new bacteria in my system or the antibiotics aren't strong enough, which means I called my PCP again today. So she said that since the steroids are messing with my immune system I need to quit taking them (not sure I will do that until after my trip....just the thought of dealing with the chronic pain is hard to think about). So there is a slight possibility that I may pretend I didn't hear her say to quit taking them. She wanted to see me Monday but I will be in Texas (good thing I'll be close to a doctor there). So I will just have to deal with the fevers/infection until I get back. Then when I get home...........I might just have to become a pain pill addict to deal with it all.

This is the IV iron..........a very exciting picture.

This is the IV with the iron going in........another very exciting picture.

This is me........trying to look excited during IV iron therapy.

This is Tanner watching "Hotel for Dogs" in the hospital bed.......trying to overcome his boredom while he waits.

This is Tanner touching the IV pole while Megan tells him not to and warns him he will be in "time out" if he does it again.

This is Tanner a few minutes later.......having made the decision that touching the IV pole is well worth a "time out".

I can't wait to have new beach pictures to post when I get back!


  1. oh man, tanner cracks me up...

    well i'm glad you're feeling sort of better... i hope they get all this sorted out soon! I hope 'yal have fun in texas. :)

    love you lots!

  2. I think the ocean will cure you for sure! You look like you're having a blast with your IV in and that Tanner just keeps getting cuter!

  3. Linda, what is your autoimmune disease? I thought you had nine toes! Tanner looks like he's grown since I last saw him-i is this possible?
    Are you cured? You look really happy getting your Iron.
    Steroids are great in the short term but as you've mentioned, the side-effects can be bad and long-term, very bad. Among other things your bones turn to mush.
    I'm so glad you're able to leave town, see family and get some ocean therapy.

  4. Polymyalgia Rheumatica is a systemic autoimmune disease. I have 8 whole toes and 2 half toes so I guess if you put them all together it would make 9. Tanner is growing like crazy. The ocean therapy was awesome! (but I don't think I'm cured quite yet)

  5. IV iron looks like it was super fun! At least Tanner was there to entertain you. Now that you're back and cured, I expect to see some cartwheels while I'm there. Maybe I'll go to the beach and cured.