Never Ending Drama

I have been getting violently ill for the past couple of weeks every time my PICC line was flushed. Last night we went back to the original manufacture of the prefilled flush syringes, warmed the saline, and I even took a huge dose of Benadryl before the flush. It happened again ~

I emailed my Immunologist about it and he said the PICC line had to go - and I had to get blood cultures.

This is a mixed good and bad. I go back to getting multiple sticks every time I need a blood draw or an IV. It will be good if getting the PICC out makes me feel better. The adhesive from the dressing kept my skin irritated, and it will make bathing easier having it gone. It was also expensive to maintain the PICC, but I had been getting left over supplies from others who had been able to have their PICCs or central lines removed. I am going to hang on to the supplies for a few weeks to make sure I don't have to get another line put in.

My last cardiology visit was more of the same. I am to do some "At home" cardiac rehab since my insurance won't pay for me to go to a real one. There is nothing else they can do to try and slow my heart rate with medications, so if the rehab and trying to lose weight doesn't work I will be sent back to the Electrophysiologist (a heart doc who works with the electrical part of the heart). HMMM ~ you would think that having an electrician husband he could just fix it. :)

Blood culture preliminary reports will be back in about 24 hours, with finals in 3 days. I really hope there is nothing weird growing in there!

I seem to be in a book slump. I haven't been feeling well enough to get into anything for a couple of weeks.

Finally Feeling Better

After finishing the Tamiflu I had a relapse. Yesterday I started feeling like my normal self again.

The sun was so pretty I wanted to get out of the house. We drove to Boone and had lunch. I was so worn out we just came back home and I went to bed. I really enjoyed getting out though. So far the rest of the family has avoided the flu.

This early Sunday morning my thoughts are with my friend, Linda Clark, whose husband and father are both critically ill. I cannot imagine being in her shoes today.  Please remember them in your prayers.

Between the fatigue from yesterday and the stress of worrying about my friend, I woke up with an itchy rash but it thankfully doesn't seem to be progressing. This is just a part of life now. I am accepting the way things are a little more each day.

Fighting the Flu

Wednesday night the flu hit hard and fast. Thanks to Tamiflu I am feeling some better, but still aching and generally not well. I wasn't even around anyone with the flu. I went to the hospital on Tuesday for an MRI, so I must have picked up the germ there. This is a tough reminder of how little immunity I have.

Here is my little grandson's profile. This is at 21 1/2 weeks. Everything looked good on the ultrasounds.

99 Years Without Parole

I'm stuck in this malfunctioning prison of a body. My hope for remission is getting dim. I know it happens, but this continuing cycle is bringing me down. I have been very careful but it seems that a little stress and a sleepless night sent me back into anaphylaxis today.

This is a bad day. I do remember the post a few days ago that I am to refer back to but it just doesn't help much at this moment. I'm tired of being strong and positive. I'm just plain tired.

When I worked in long term care, I felt so bad for people trapped in bodies that didn't work. I was in my 20s, and I didn't have a clue how bad it could be. I am no where near what those people deal with on a daily basis, but I have a much better understanding now than I did then. Can you imagine being trapped in a body that will no longer move? Imagine being completely coherent but unable to communicate. Yes, there are plenty of people who are worse than me. I can write to you. I can talk. I can walk. I can feed myself.

My sincerest wish is for everyone to be ready in case something goes wrong. I have an advance care plan and a power of attorney for health care. We all should. Think about what you want if you can no longer control your own body. Be sure it is written down and legal. It will keep me from worrying that  you are trapped in a prison without parole. Forms are available at any hospital.

My Driveway is Thawed!

Book 8 for 2011 - Lucid Intervals by Stuart Woods. This book was ok - not the greatest. I was a big Stuart Woods fan in the early 90s. I'm not sure if my tastes have changed or if the book was just not as good as some of his earlier ones. As with all his books, it is a little trashy, but not to the extreme.

The warmer days finally thawed out the driveway. More snow is possibly on the way so  it may not last long. It is nice to see something besides white outside. My grass is actually green.

I had a rough day yesterday with lots of stomach issues. I couldn't take my medicine until late because I had to have fasting labs and I really think that was the problem. I have been having lots of shaking but my blood sugars haven't been low. More mysteries.

God Does Answer Prayers

Scott's paycheck went in the bank and wasn't enough to cover the bills. At 4:30 this morning I was praying for God to send enough money some way to get us through to the next paycheck. At 10:30 I checked my email and found that the check for one of my retirement funds that I was cashing out is in the mail! Once again, consider the lilies. Thank you Lord.

Casey is 20 weeks - half way to baby. She looks so healthy and happy.  As you can see, we still have plenty of snow at my house. The driveway is covered with about a 1 inch sheet of ice. It is more slippery than ever. We are hoping we will get some rain to speed up the melting.

I had such a great time with the girls this weekend. They really are the most fun a person can have. Kristen may possibly leave the Christian school and start homeschooling. I really enjoyed learning with Casey when she was homeschooling. I did not enjoy having to be the bad guy who made sure she did her work.

Anaphylaxis has been under pretty good control for the past few days, but the racing heart and hip pain continue. I finally broke down and called my internist this morning to see what can be done with the hip. It is getting very hard to walk. It is extremely painful. I am waiting on the nurse to call back - Dr. Patel wants an MRI but the insurance may not allow it. It seems that prednisone is especially hard on the ball part of the hip joint, and since I have been on Prednisone for 9 months it could have done a lot of damage to that bone. I was already compromised before all the steroids due to osteopenia.

As I already said earlier, God answers prayers. It isn't time for me to be well or God would have already healed me. I get discouraged, and I know all of you who pray for me sometimes get discouraged too. We all have to remember that I am where God wants for me to be and he will not give me more than I can bear. On days when I am having a pity party, please refer me back to this post. :)

Waiting

I know there is a divine purpose for my life, but today is one of those days when I just want to get on with it. Some days are a struggle, and this is a big one. It is one thing to know there is a reason, but it is very hard to keep faith daily that living this way is bringing good to someone. I don't see any way that I am blessing anyone like this.

I am continuing to have severe hip pain. I keep putting off calling my doctor because he has already told me he wants an MRI. That may seem a simple request, but to me it means the total exhaustion of preparing for and making a trip to the hospital for the test, not mentioning the expense. I plan on toughing it out for a few more days if I can by alternating heat and cold and increasing my arthritis meds.

My heart is also back to beating inappropriately. Today is a pity party day.

I did finish a receiving blanket for the grandson. I haven't been doing much because I am back on a sleeping jag. At least if I can go to sleep my hip doesn't hurt.

I finished book 7 of 2011 - Big Cherry Holler. It is a nice light read - what my friend Kay calls fluff. It is set in Big Stone Gap, VA. I read this one as a actually paper and ink book; a loan from my mom.

I have really enjoyed talking to friends the past couple of days - thanks Louann and Jane for making my days brighter.

Thanks also to all of those who continue to send cards to brighten my days. Knowing someone cares is a comfort.