Thursday, February 22, 2018

Feeling a lot less Anxious with the new nebulizer medicine


Wednesday was a pretty good day.  I went to see Rob in the morning for blood work and to try out a new nebulizer spray and it worked very well, especially since I didn’t get anxious.  I rode my bike for forty minutes and then I went to my office and then to Justine Jackson’s presentation and then I taught and then headed over to River Company for dinner with Justine and other members.  She seemed very smart and lively.  I then headed home and I did not do any weight and yoga because I was really tired,  I did have a compression stocking so I put that on and heated my leg and I slept very well with no cramping. 

Sunday, February 18, 2018

Still Tired, Still Anxious, Still having trouble breathing

This is a huge catchup since I have been so tired along with having trouble breathing and being anxious.  I did teach okay last week (fortunately my troubled student didn’t come to either class).  I went to see Rob on the past Friday morning and all my tests were okay, enough oxygen in my blood and my protein in the urine was the lowest since I got sick, around 3.  I am not sure I will be able to get my left cataract removed since my bad cold is lingering.  I should find out Tuesday.  I cancelled my paper at CEA and I put off my visit to Roberta, which I was looking forward to.  I am exercising some, usually 30 to 40 minutes of biking, some weights and yoga, a little walking.  I sang today but I was pretty shaky on my legs, though I think I sang pretty well.  I got a lot of grading and reading done today and had a good talk with my sister Roberta who was fine with my coming in May.  I drove out to little Stony just to have a bit of a break  and then I rode my bike for 35 minutes in the Perry Street garage and did 8 ramps.  Back home I napped a few times and then did more grading.  I am going to talk to Rob and Trivedi on Tuesday and see if there is anything they can do to help.  
                                                  

Wednesday, February 7, 2018

Not much Energy

Wednesday had its moments but I’m glad it’s over.  I did my knee exercises, sang some scales on the piano and my three jazz songs, then I headed into Radford.  I was tired during my office hour and then a took a nap from 4 to 4:30.  It was very tough to get up and when I got into class, my problem student was unbelievable.  She refused to hand in the surprise quiz she didn’t hand in on Monday, then on the surprise quiz for today she kept her book open and her cellphone out, checking both until I told her she had failed the quiz.  She then packed her backpack and left.  I drove home and watched a very exciting victory by UVa to edge Florida State.  I did 30 minutes of biking and then I took a walk for 25 minutes before getting on the computer and writing Rosemary about the situation.

  

Monday, February 5, 2018

Getting my energy and memory back.

Sunday was the Superbowl and it was a oretty good day.  I did my knee exercises and then headed to St. Mary’s for practice and then performing at 11:30.  I sang okay but I had to sit at points because I was too shaky.  There were only 4 singers including Beth and I left a message with LoriAnne apologizing for my problems.  After mass I drove home and napped, then I did my biking for 30 minutes, walked in the hallway for 30 minutes and then did my weights and yoga after the Superbowl.   I think I am mostly recovered from the double dose of Clonidine and that felt good.  I am down to 12 and ½ and 15 mg of prednisone and hope to be much lower soon.   

  

Saturday, February 3, 2018

Bad things going on

The past ten days have been very bad.  Rob decided that I should get a second opinion about my lupus so I set up an appointment with Dr.  Ghosheh in Radford on the 30th.  He seemed very smart and he explained that the kind of lupus I have is a difficult one.  He basically agreed with Dr. Trivedi’s treatment, saying that the cellcept and then the chemo (cytoxin) were the standard treatment but that the prograf  had not been researched much.  He told me that the hydralazine had been known to cause lupus in rare instances and that I should stop it (which I did).  He said I should go see a specialist and he recommended the best in the world, a Dr. Apel up at Columbia Presbyterian. I left feeling more knowledgeable but I little scared.  The next day I went to see Dr. LaFlam, Trivedi’s partner, and that visit was very informative but very scary.  He was a little defensive at first but once he sensed how upset I was, his manner changed and he became really helpful.  He went over my treatment from the start and agreed with Dr. Ghosheh that my lupus was a difficult one and said that “success in my case would be maintaining you where you are.”   He told me when I started that my kidneys were functioning at 39 percent and now they were at 51 percent but you can’t say I am getting better since the number can vary quite a bit.  He agreed with Ghosheh about the hydralazine and also recommended going to a specialist and that there was a very good one at the University of North Carolina.  I asked him how long do I have to live and he said he couldn’t say.  I left pretty upset.  I started a double dose of clonidine the 31st and it made me incredibly tired, to where I could barely walk.  The next day was about the same and on the 2nd I went to Trivedi’s office for the bloodshot and I had taken a carvedilol and two clonidines about 40 minutes before I got there and I had trouble making it to her office.  Christine took my blood pressure and it was 176 but one of the doctors approved the shot and I got it, though it hurt a lot.  I had a hard time getting back to my truck and then I had trouble getting up to my office (being tired and dizzy).  I immediately took a long nap and had to really struggle to get up.  I did my work and then headed home for another nap and then I got up and rode my bike and did two sets of weights and yoga.  At about 4 I woke up and decided I should pray and I couldn’t remember the Our Father and that distressed me a lot.  I had to look it up on my phone and I also saw a NEJM sit which says that long term use of prednisone can affect your short term memory but that the effects can sometimes be reversed.  This is really scary.  Am I going to be a zombie with good kidneys.  I also looked at a site that said that prednisone did not cause Alzheimers, which was a bit of a relief.     

  

Thursday, January 25, 2018

A Busy and Frustrating Day

Wednesday was a rough day.  After my knee exercises, I had to head off to see Dr. Farhi and though I got there at 11:20 I didn’t get to see her until almost 1.  I asked her a few questions but then had to leave for my dental appointment, where I found out I have a cavity and I have to come back to get that done.  I had a problem with a student using her cell phone hidden below her desk and when she seemed to be doing it again, I called her out on it and she actually wasn’t and she said she was looking at her fingers.  She got upset and said that this wasn’t high school and she wouldn’t come sit up front.  It was unpleasant and I have no doubt I will hear from Rosemary about it.  

Sunday, January 21, 2018

Some Health Concerns

Saturday was highlighted by Rob and I driving up to Salem to see Caryl, Rob’s mother.  She was pretty frail and walking with a cane but she was still lively and we had a nice visit back at her place at Brandon Oaks. 

Sunday turned out to be an okay day but it was a very tiring one and I didn’t sing very well because I was shaking too much and the news of the rise in my protein in the urine level (from 5 to 9) has me a little spooked.  After singing I went to play golf and did okay, shooting a 97 even though it was pretty damp.  I then called Rob and he invited me over to watch the end of the New England game, which I did, and then we took a walk on the Tom’s Creek trail even though I was exhausted.  We went back to his house and he made me some dinner and we watched UVa beat Wake by 10 and then we watched some of the Philadelphia game.