Circles

Living with Lyme often makes me feel as though my life never is progressing forward; I feel like it keeps going in circles.  I keep dealing with the same problems over and over again; I just wonder when it all will go away.

Yesterday I went to physical therapy after a two and a half year vacation and once again my sacrum was out of place, which caused my entire many of my vertebrae to be out of alignment.  These are the same problems that I dealt with all of high school.  I went to Life Strength physical therapy once a week for pretty much all of high school for alignment issues and now I am re-circling.  When your back is out of alignment it can cause added pain and stress to other places that don’t really need it especially when I am trying to stay healthy and heal!!!!

I am so frustrated right now!  Another very touchy topic for me is home health care for my PICC.  When I was at JMU, I had a terrible experience with my first home health nurse and even my second nurse didn’t follow protocol as well as she should have.  I may sound anal about this, but if you had a central line in your arm that leads to your heart I bet you would be the same way.  I have read so many horror stories about people getting infections, blood clots, and sometimes-even death if people don’t pay close attention to these risks!  So anyways, yesterday my new nurse Doug, who by the way was a well-rounded older man with gray hair, came over to change my dressing and inspect the insertion site.  He had no idea what he was doing; when he was taking my current dressing off he didn’t even wear gloves and he was tearing the dressing off!  For those of you that cannot relate to this feeling, the skin under the dressing is so sensitive and rawà it is NOT meant to be torn off.  You are supposed to be gentle.  But, beyond that he did not wear gloves that just sent me over the edge and he didn’t even do the dressing right.  He didn’t clean the insertion site at all; he only cleaned around it!  Then he attempted to put the Tegaderm cover over the site, but he just butchered it!  He didn’t even cover the statlock up; I wanted to take a picture but I knew that would be inappropriate.  He had to open a whole other dressing kit to get out another Tegaderm cover out to cover it up again!  It was just ridiculous!!!!!!!!

Needless to say, my Mom had to call the home health agency and report that we were not happy with Doug.  They apologized and said they would send a new nurse out later that evening, but they never specified a time so I couldn’t even go anywhere.  The worst feeling for me is feeling trapped which is what I was beginning to feel yesterday.  I couldn’t go anywhere waiting for this nurse and that was a common feeling I used to feel freshman year at Elon because I didn’t have a car and I was so far from home.  Once again though reiterating that feeling of circling and not moving forward.

Finally, after much pestering from my Mom, who was very anxious because she missed her art class, Miranda, my new nurse, showed up at 8pm.  Miranda had a thick accent, which I could not decipher, got the job done!  I could tell she was extremely nervous, rightfully so though.  She followed all of the steps to a tee and even looked at the picture of what my PICC dressing looked like before Doug had messed it up.  She was also very patient with my Mom who was sitting in the room reading the instructions word for word that my doctor had typed up; I must admit it was helpful, but a bit much. 

I didn’t sleep well last night because I didn’t take the Remeron; I am afraid it is making me gain weight so I wanted to see if for a few days my appetite decreased.  I must admit though the Remeron does help me sleep because I was up at 5:45am and I just was lying there until 8:15am.

When I did wake up I wake up I was experiencing a lot of joint pain in my knees, pain in my back, and lots of muscle pain, overall negative outlook, pressure behind my eyes, irritable, angry, and anxious about the future which made me feel like I was circling too!

Ooooh! Something exciting did happen!  I was interviewed over the phone for an article to be published in the Harrisonburg newspaper on Lyme disease.  I fascinated the woman because I was a JMU student and she was a JMU graduate, so she interviewed me for 30 minutes asking me a bunch of questions about my specific story and about the overall controversy concerning the disease!  I was so happy to be able to educate someone and hopefully a bunch of people if it is published like she said it would be so I will definitely keep everyone updated on that!  That did give me a lot of hope!  J

My ending quote today is, “You will not be punished for your anger, you will be punished by your anger.”