As I move deeper into Year #2, I am frustrated by my own whining and lack of incentive. While I've never been a Type A personality, neither have I been a complete couch-potato. These days I just don't get myself up and around as I feel I should...
So what's happened in the last 2 months?
1) My visit to Dr. Ann was good. Although my overall status had improved less than she would have hoped - she was much encouraged by my physical look. She said, "You don't look like someone who is dying." For most people that may be a "left handed compliment", but to someone with a terminal condition, she was voicing tremendous hopefulness. Actually, most friends and family tell me how good I look...
2) Jane Erickson and I met face-to-face and hugged!!! She and her husband, and Robbi and I were taken to dinner by Ann and her husband. It was a wonderful evening - just to look at Jane. There are feelings and understandings that can't be experienced fully without the involvement of all available senses. To watch and listen to her as she spoke with Robbi and Ann... to see her look at her husband during the dinner... to hold her when we met, and when we said good nite... it was beautiful.
3) I was denied SS Disability. After chasing the bureaucracy round and round... I've begun the process of reapplying. There are no guarantees, but we are fortunate to have our friend George to help guide us through the legalities. George gets a GAME BALL (remember those?).
4) We passed the anniversary of the dates when we went public with our appeal for help. It was an emotional passing of this milestone - especially as we shared the holidays with most of the friends who were directly accountable for the success of our fundraising campaign. A year later, we are able to share a wedding, a Bat Mitzvah, the High Holiday Services, and casual dinners and conversation. I am grateful for my family, friends, and community.
5) I've been taking steps to get my physical condition honed. I've been participating in physical therapy and I went to an acupuncturist. Going to PT gets me motivated to get up and out of the house. As part of the program, I've gone to the pool session and it felt good. Even the next day I felt OK and motivated. The acupuncture was not so good. It was weird on several levels... perhaps it was my response to this practitioner's style or personality? Perhaps. The room was very clinical and I expected a more calming environment. He used electrical pulse - connected to the needles, and I expected a more "organic / natural" approach. Then he prescribed a mass of herbal supplements that were manufactured in China... call me stupid (or even racist) but I don't trust much of anything to be ingested, that comes out of China these days.
6) I followed up with my Endocrinologist to see if the Testosterone therapy has been working. It seems that the benefits are that my depression is lower in intensity, and my energy level has increased. Now, the doctor acknowledges that the meds I take for ADHD may have the same affect and that we may never know which is working best... however, he and I discussed the pros (some) and cons (none) of increasing the dosage to track the differences. My dose is moved up. Stay tuned for updates - Will I be banned from the Major League Baseball for using human growth hormones? Will I ever get a sexual urge again?
7) During the last week, I have had labored breathing. Gordon had difficulty getting a good reading on my oxygenation. My fingers are yielding less accurate data. He's concerned that I may have an infection, but the xray is inconclusive...
8) I'm scheduled to get a PFT (lung function test) and see Dr. Fisher, on 11/7. I am anxious about the test. NOT the results. I can handle the those. It's the actual testing that scares me now. I hate the process because it makes me cough so violently that I throw up and it takes me a real long time to recover - and then we run another test and I go through the coughing rampage all over again... It SUCKS!!!!!!! I wonder if there is another method.
9) Called Fisher's office about trouble breathing... they scheduled a CT Scan for this AM. I have an appointment with a Pulmonologist this Thursday.
10) I'm now using Oxygen all day long. I don't know if it helps but until we can figure that out I will continue to use it. My temp is rising every night to about 99 degrees.
11) Jane has been having a tougher time these days. She thinks that it may the change in the weather. Maybe...
There is news about Dr. Ann - She is on a Leave of Absence from MaineGeneral. We don't know why or for how long. These matters are never discussed publicly.
For me this is not as critical an issue because I have a battery of medical resources. The ones who are most affected (besides Ann and her family!) are the que of patients who are lined up for treatment at ME General.
Jane is in the process of referring them to Dr. Burt at Northwestern University in Chicago. You may remember that I have spoke with him: a) He is the one who Ann worked with before coming east to UMASS, b) He is running the official study that is just like the treatment that I got, c) he is a very passionate and dedicated professional.
I will begin to assist Jane soon. The burden is too great for 1 person to bare.
