Guest Blogger: Maria Pfeifer

I think sometimes other people say things far better than we are able to express them ourselves. Today, I’m happy to share my blog with Maria Pfeifer. Maria is a fellow blogger with lupus. She is the coordinator of “My Life Works Today! A Living, Learning and Lupus Network.” For more information, visit http://mylifeworkstoday.com/. When Maria shared this post with me, I was struck by the sheer honesty of it. And I think she expresses feelings and brings up issues that many of us face, but are unwilling to admit to. Without further adieu, I give you Maria…

*****

I have had a rough couple of days. With last week’s remembrance of those we lost on 9/11/2001, it all seems so trite and embarrassing, really.

I have noticed a change in how I respond to events, circumstances and even people that are in one way or another ‘threatening’. Not the obvious stuff like imminent danger or in-your-face reactions. I’m talking about the uncomfortable, unseen and unnecessary conflicts that I’m feeling less able to avoid these days.

I thought not having control over my immune system’s erratic responses was going to challenge me the most. What has happened, over time mind you, is that I’m feeling more confident in not having health care in case something happens to me, and more vulnerable to forces around me that are as deceiving in their ‘beneficial services’ as my immune system!

For example, the internet. I have been struggling to figure out how I really feel about it. Having the access to information, people and opportunities is very important to me. The problem is, everyone who is out there to make a buck or interfere with what I want to accomplish knows how important it is to me. This isn’t new – I realize that. What concerns me is just how dependent I’ve become on having it and how easily my life comes to a screeching halt at the very hint of viruses, hackers, server failure, or my own operator stupidity. The reliance on Twitter, Facebook and other sites to affirm that what I want to say and do is dependent upon approval, Retweets, friend/follower acceptance and requires constant input. Or does it?

Blogging has become a valuable source to connect, find and discuss issues pertaining to lupus outreach – what I do. Lupus is not just what I have - it is what I do and THAT makes it a part of who I am. While doing the usual maintenance and management work, I noticed the ever-present theme of not being able to write. Why? If it is so important to do and be what I see myself accomplishing, then what makes it so difficult? To not blog doesn’t feel like an option, and I seem to have developed a perverse reliance on Twitter, Facebook and other sites to affirm that what I want to say and do is dependent upon approval, RT’s, friend/follower acceptance and requires constant input. How did that happen? I consciously know better, yet I have allowed this seemingly fun and available medium to communicate become toxic to my very being.

Answering the phone – I just don’t do it anymore. Yes, I screen – otherwise I would be up every ten seconds. I have put myself on lists only to have them hitting my cell phone, too. The constant email spam is easier to deal with, but both phones have become more liabilities and nuisances than they are helpful for me. I resisted a cell phone for years and still cannot justify the cost only to say that at least I can find my kids easier in an emergency.

The healthcare debate. Community Town Halls, media coverage of all forms, my representatives in who I have placed a great amount of trust to know what I need. The insurance and pharmaceutical companies. Just the other day, I received a bill from a physician’s assistant who saw my youngest for a physical to play volleyball. I learned that my daughter received a vaccination I had already refused to have given to her. There were tests ordered for EKG’s and ‘thorough’ lab panels due to concerns about extremely high cholesterol (229 at 14 years old?!) and an irregular heartbeat that has never been detected before. Yet, she was given a clean bill of health to play at that level knowing these concerns. Huh? I went in and questioned the reasoning, was assured I had it all wrong and walked out of there without agreeing to any tests – the P.A. finally conceded that a ‘watch and wait for six months’ would be “fine”. Yeah, I know. Imagine how much money I saved and how little you got kicked back to you. Since when did receiving proper health guidance become a competitive sport?

I firmly believe in the “less is more” approach to living. The problem is that I am finding that I have less ability to choose what I want and don’t want to bring in to my life. I want to decide whether I will pay the bill on the 15th or the 30th...living so close to the edge requires flexibility. Yet, I can no longer go to my dentist of 20+ years with good payment history – I have to pay up front before anything is done. I have had my credit card for about 27 years with the same company – I have been an excellent client, yet I closed it because they decided to ignore my history and make that added option ( if things got rough) into a threat to my financial survival.

There are countless ways in which I am feeling more pressure to see the potential harm that these ‘helpful’ sources can cause me – and I am losing any ground in avoiding them. If banks go 100% online (they are now beginning to charge for using any paper), then I have to have the internet. If I have the internet, I am open to a whole lot of people out there looking at their own needs, not mine. If I go through my days having to watch my back to thwart something coming out of left field, I physically respond causing my lupus to flare. If I flare, I have no healthcare to help me through it. If I loose the health I have, what good is what I do and who I am anyway?

I thought losing control over my health was enough to make me lose sight of the person I wanted to become. Today, I am getting the feeling that having lupus was only the beginning of more to come. Gloom and doom aside, I know there is plenty of joy in this world to be had, but I am getting so tired of having to dig for it as deeply as I seem to be. The remembrance of 9/11, a week ago today, reaches farther than that single day eight years ago – we need to recognize our true vulnerability and how we are not the country we used to be, nor are we truly the top of the food chain…

Just ask any virus you come into contact with…

*****

Thanks, Maria, for sharing your insights with us!