Feeling much better on the adjusted meds

Thursday was a good day also.  I did my knee exercises, then showered and headed into RU to have my office hour and then teach at 2:00.  After class I went for a bike ride along the river and drove home just before dark.  I did my weights and yoga and watched TV.

Friday was a day off and though I was a little anxious I had a lot of fun.  I drove out to Trails Edge and caught 2 nice bluegills.  I then drove back, took a nap, then played 9 holes of golf (just nine holes so I didn’t overtire myself and then headed back to Blacksburg, where I rode my bike and then headed home a little after dark.

Saturday was another good day of pretty good energy and little anxiety.  I wrote to Amy and told her I just wasn’t up to teaching in. the governor’s school and though I could use the money, I just don’t have the D2L skills or the desire to take on all that stress to clear 3 thousand dollars.  I did my bike ride over at Tech and did my weights and yoga when I got home.   I felt pretty good all day. 

Sunday was an even better day in terms of my mood and my energy.  I slept okay and finally got up around 9:30, giving me plenty of time to get ready and head over to rehearsal at 10:30.  Rehearsal went well and then singing the mass was very good.  I stood up for all of the songs and some of the other stuff.  After mass I went for a bike ride at Tech for 40 minutes, then came home for a nap, then went back over to Tech for a 35 minute walk outside.  Then I drove home and chatted with Dave and he told me how sick Erina was and I wished her well.  She is having a lot of breathing problems and I can understand those.  I came home just before dark, took another nap, finished grading and paying some bills and doing my blog.  Really good day.

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. 

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.  

                                                  

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.

  

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.   

  

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 2^nd 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.