Wednesday, July 29, 2009

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.


Kerry said...

Maureen, so glad you at long last have your pain medication...but wow how exhausting and overwhelming the physical consequences of the time without them. You endure much my friend and keep a fightin. Your strength is an inspiration, as is your acceptance of living with chronic illness and pain.

Glad that your blogging again and congrats at having your advocacy post on the pain carnival. Kerry

SharonMV said...

I had just started reading you blog a couple of months ago & was concerned when their were no posts for so long. I'm sorry for what you had to go through & that you are now dealing with more health problems. But I am glad to see you blogging again.

I have CVID (common variable immune deficiency) which means my body doesn't make the antibodies to fight off infections. I get IVIG treatment which is very expensive, so there is a lot of fighting with the insurance company. I also have SLE (Lupus) & some other autoimmune diseases.


Cheyenne -Millie said...

It is good to see you posting! We are sorry you need higher doses of pain medication!

Renee said...

It is soooooooooooo great to see you posting again. So glad you able to have the medicine you need again. You have really gone through so much..what courage you have. I have a poster on my wall that I framed and it shows women from around the world. The caption says , MANY STRONG AND BEAUTIFUL are one, Maureen. You are defintely one. You are in my prayers and your mom too.