On Monday I had a very good lymphedema massage appointment with Martha, my friend and someone who was just mentioned as one of the most encouraging and positive physical therapist at the Vascular Center. She said she's not going to give up on me and that it's natural to be depressed given the setback I've had. I pointed out the recent article with a large section about her and congratulated her. She liked that. I told her I had an extra copy of Jerome Groopman's Anatomy of Hope. I asked if she'd like to have a copy. She said, well, Yes. I could tell she enjoyed receiving the gift. She has M.S. herself and I know we would both benefit from reading it. My hands were cramping badly while driving home, but I felt good about our meeting. I can be in pain and yet still be very helpful. It does not take away my essence.
On Wednesday I made up my mind to discuss my increased depression. Joan, my nurse practitioner who helps me with my brain chemistry is another person I trust. I told her about my swelling, pain, and exhaustion problems being worse and about burning myself badly. It's difficult to overstate how painful and difficult the wound healing was for me. The main thing is she understood. She wants me to add a little bit of Accolade to the Cymbalta. She's seen it help a lot of people. I'm thinking ok Frank, another problem approached and probably solved. Being unusually depressed doesn't help my healing
Today's appointment was with my allergist. I said to myself write out your most pressing issues and give him a short note when the appointment begins. Make sure we deal with them. Ok, well first it's to avoid that snafu from last year when the prior authorization was delayed for six weeks for the $40,000 per year medicine (Xolair) that is keeping my breathing going. Last year they kept sending the prior auth to my health insurer who does not handle my prescriptions. Rx America does that for me. The next thing was to adjust my allergy injections. I get three of them and can't tolerate more than one at a time. So that means I have to go downtown three times every two weeks for that plus my Xolair injections appointment and do all the other appointments. We had a good talk. He'll reduce the dosage some on each allergen, but he'll see if he can put everything into one shot. Hurray. Then we talked about how I was doing. I know over the almost three years with Xolair that I've gone from 48% lung function to 74% lung function today. He remembered it as me being in the 70% range for a long time. He had forgotten all the progress. I've moved up 2 or 3 percent with each appointment after we stared with Xolair. After three years those little changes have become substantial. Not good enough yet. On a very good day for me, the best I can manage is 74% of normal. But a big change for me. I said look at all the change we've made. If we just stick with the Xolair, I'm going to be ok. He smiled. He understood that we’re out of that danger zone now. Sometimes docs get caught in their defeats and bad days too and shower it on their patients. Please let's see positive change for positive change.
So, you see that although things are a struggle now I'm not giving up. We're working on things. Progress is real slow. Sometimes even maintaining or dropping back a little more slowly are victories. There is so much too look forward to each day. Maybe a lot of us are going to be those types of people that thrive even with many illnesses. It's all about hope and feeling some self-worth and power in what we do to attack the problems. It’s about doing our best, striving to improve, and trusting in the Lord’s guidance and help. Sometimes it's just about helping others see things in a little more positive and hopeful light. Our lessons and understandings are beacons of hope to many.
I'm going to leave you all with a quote from the book I mentioned. Anatomy of Hope, page 193.
“We often speak in poetic terms, I noted to Davidson: we are “lifted by” hope, hope “has wings.” Certainly this sense of elevation was apparent from the bedside, as I observed patients, and in my own experience as a patient. When Jim Rainville painted a picture of a very different future for me, my feeling of hope encompassed more than information about a different diagnosis and a new therapeutic approach - - it involved a unique feeling state that was intensely visceral, sensed as a sharp upward shift in mood.
May all of us be lifted by Hope and on the Wings of Angels. Your friend Frank.