Thursday, July 30, 2009

Thankful Thursday

Mom and I had a busy day. She had a procedure this morning that required her to be put under anesthesia. Of course we had to be up early to get to the surgery center, and although we were on time, the doctor wasn't. The important thing is that mom came through it all okay and although we don't have the biopsies back yet, the doctor is confident they will be fine.

We live in Floral Park, the town in which the family who was killed on the Taconic Parkway lives. The last few days have been a time of great sadness in our community. The only good thing that happens at a time like this is that you realize all the blessings you have. I am blessed to still have my mother with me. I pray for the families who no longer have their children, their mom and their dad there to hug at night. Please keep them all in your prayers and hug your own loved ones tonight and be thankful for all you do have. Illness can't take those important relationships away from us!

Wednesday, July 29, 2009

July Pain-Blog Carnival

The July edition of the Pain-Blog Carnival hosted by How To Cope With Pain is up at Pain-Blog Carnival and yours truly has a post on advocacy that was included. Please stop by and check out the carnival and the posts selected, you will always find something interesting and helpful there.

And The Beat Goes On

Have you ever had so much to say you didn't know where to start? That's how I feel right now writing this post. So much has happened, and yet it would be ridiculous, not to mention novel length, to tell it all. So how to sum up without dismissing the horror of the past few months. . .

Obviously things took a big turn for the worse with the insurance company debacle over covering my pain medicine. That, for the moment, is straightened out. What I have learned along the way is that everything is always hanging by a thread, waiting to fall apart with little or no notice. Because my body was put through so much with out of control pain, I am now on even higher doses of pain medication than I formerly needed. This not only angers me, it costs me more and will in the end cause more problems for me medically. The blame for it sits squarely at the feet of the insurance company, who of course could care less.

Not surprisingly I am having all sorts of other medical issues. Many of these are directly related to the stress my body and mind have been under while fighting to get my pain back in control. I am currently going for testing to see how my pancreas is doing, if there has been further damage and if there is anything else that can be done to help. My immune system is completely shot, so a host of other problems has cropped up as a result of that, continuing infections, malfunctioning parts of my endocrine system, mysterious weight gain and water retention. I have more problems than time in the day to address them.

I am seeing lots of doctors, including quite a few new specialists, who are trying to address the problems - many of them don't have answers. Fortunately, being a veteran of "invisible illness" I am all too familiar with this scenario, so I mostly take it in stride.

In the meantime I have been taking a long, hard look at the things that ARE in my control, and what I am doing to support myself. The first thing that seems to go is self care, which of course is most important. I listened to Jenni Prokopy's first podcast over at ChronicBabe, and although I knew most of the information, it was a nice reminder. Good advice handled with humor and compassion. I recommend checking it out, even if you have been ill for a long time. Sometimes we all need a kick in the pants, and the information she gives, while basic for those of us who have been dealing with chronic illness for a long time, is still helpful.

I am so grateful for the many wonderful e-mails and comments I have received from many of you while I have been struggling. I never cease to be amazed at the amount of love and concern that people have to share, and am humbled that they choose to share it with me. Even though my posts have been erratic and fairly maudlin lately, I have been lifted up by the care and support of each of you who took the time to say you where thinking of me, praying for me, understood what I was going through or just plain cared! Thank you from the bottom of my heart. It is support like this that keeps me going when I feel like I just don't have another fight left in me.

Hopefully my posting will start to be more regular again, and of course I hope to touch on something other than just my illness in each post. Thanks for hanging in there through the dark times and please keep coming back to share the lighter times as well.