Updated info

Many of you know that my Uncle Jere passed away and we drove to Kerens last weekend for the funeral. My mother has buried both parents and now her big brother who was only 65 years old. My father was unable to attend the funeral because of his role in a fire investigation, therefore, my mother needed her girls. If you have ever been around all four Callaway girls at the same time, you know that our presence should come with warning labels. My father had reason to be concerned. Imagine my level of sarcasm and insanity intensified 4X! To make things more entertaining, you may remember from my last post that I was put on a new medicine to help with the fatigue. Well...I took the first dose and noticed zero improvement. The morning we left for East Texas, I doubled the dose and was flying high by the time we hit Killeen. I use that as my defense for why I didn't notice that my shrimp tacos I had for lunch were...well...not current! Oh, my family noticed right away and decided to point out the smell and nausea over watching me eat them...yep, after they watched me eat them! John was positive that we were all insane...but since he was driving, could not jump from the vehicle!

I still managed to make it to the viewing and funeral without anyone mistaking me for the guest of honor. The exhaustion, stress, and 100 degree weather did take its toll, but not until we returned home. It was nothing that some rest couldn't address.

The ring bearer from my wedding got married himself this past Saturday. We were so glad to see everyone. During the reception, I was able to get my feet to cooperate for line dancing. Everyone thought I was calling out the steps for my kiddos who were following along, but truth was...I was talking to my appendages. I figured I would give them all the help they could get. I didn't even fall out of my top...can't say the same for all of the participants. Here is a tip...don't let your dance partner flip you when you are wearing a strapless dress that might be a little too small. Something is bound to spill!

Okay...for those playing along at home...here is the latest medical update: I received a call from the Mayo Clinic last week to discuss the last relapse and the current treatment plan. I expressed my frustration with treating the relapses and not preventing them. Not only is there a risk of death and permanent brain damage with each episode, the repeated exposure to inflammation of the brain significantly increases my risks for dementia. I told them that I was frustrated with the fact that we are approaching the one year mark, and I have not moved forward. In some regards, have lost ground. The response I received was less than hoped for. The message was clear. I am lucky that I was able to go nearly 8 months between episodes. The miracle drug that is not preventing relapses, at least kept me out of the hospital and has slowed progression. "I honestly do not expect you to make an progress from this point," I was told. " We will be happy to just slow the progression." Because of my smaller size, the Mayo Clinic does not suggest suppressing my immune system any further than it is now. Despite numerous articles on the web about other treatments, there are not other successful treatments available. The top sites that recommend IVIG and Plasma transplants are from patients and patient advocates...not doctors or scientists. Truth is, we are doing all that we can right now.

The last couple of days, I have had increased fatigue and trouble with my speech and motor skills. This was explained a couple of hours ago when I received a call from my doctor. My latest labs are in and there is another increase in my TSH and antibodies. We are increasing my thyroid hormone again, but that has not made a difference in the past. Fluctuations are to be expected with the Thyroiditis, but this creates increased antibodies...which aggravates the encephalopathy. I also received a letter from the Social Security office today about my disability saying that I do not qualify for benefits since I took a few years off to be a stay at home mom. Fabulous!

It's not my hair!

I had an early start to my day. I had to get my booty out of bed, showered, and covered so that I could face the Stone Oak traffic. For those of you who do not live near San Antonio, Stone Oak traffic is the inspiration for many dirty, dirty words!

I had to get blood drawn for the Endocrinologist and then hustle to my Rheumatologist's office for an appointment. There were three people ahead of me at the lab and my appointment was in 15 minutes. The phlebotomist poked his head out and looked as though he recognized me. He waved me back, to the dismay of several grumpy...and large people. Hey this is the San Antonio Diabetes and Metabolism Center...my peeps are mostly portly! Anyway, the tech said, " You look familiar." I reminded him that he had drawn my blood before and I might have been a little bossy. I just said, "No, this arm...no that vein...you're using a butterfly right?" He laughed and reminded me it was a "No fly zone!" I threatened to cry and make a scene. The lady sitting across from me looked terrified, and I don't think it was about the needle. I got my way, and the tech got teased for being a push over by his co-worker. I was out in 5 minutes! See, my smart mouth has gotten me ahead in life...or at least ahead of the fat people. Haha...I'm just teasing!

I made it to my doctor's appointment for the highlights of the day. Paperwork and scales is not the best way to get repeat business. I'm just saying...anyway, my cutie pie doctor walked through the door. He smiled at me and asked, "Have you done something different with your hair?" No, silly...it isn't my hair! While that looked fabulous, it was the fact that he was introduced to my cheek bones for the first time since I began to see him. You see, I had been on high dose steroids for four months and had put on 20 lbs before I was sent to his office.

He informed me that he had conferenced with my Endocrinologist and she expressed fear in increasing my immune suppressants. I recently had labs that showed the current dose might not be working. They agreed to wait and see how my body reacted (which was what today's labs will show). "Explain this to me doc," I ordered...nubile (haha...a new word a friend taught me!) "If my thyroiditis was suppressed for nearly a year, why would we just adjust my thyroid hormone? After all, I was taking that dose when I was first hospitalized last year!"

He told me he understands my frustration, and would feel good about increasing the Cell-Cept, but this is a Neuro-Endocrine disorder. He is leaving the decisions up to the Endocrinologist. "How do we know that the Cell-Cept is making a difference if I am still relapsing?" I asked. "Well, you weren't hospitalized after the last relapse and you have survived three major episodes. I call that success!" he bragged. Hmmm...I'm sorry...could we try to prevent the episodes instead of just treating them? Apparently not at this time.

He did give me a new medicine to treat the increased fatigue. They give it to patients with narcolepsy. Fabulous! I told him that if we weren't married, and if I had a womb, I would offer to bear his children. Don't worry...he understood my appreciation and the fact that I am a little nuts.

I ended the visit with a trip back to the lab for a CBC to make sure I am not anemic. "We might ought to try coordinating our labs," dear old doc muttered. I sat for the draw and the phlebotomist looked at the arm that wasn't bandaged. She looked...looked...rubbed the veins...squinted real hard. "Why don't you just drawl from the other arm?" I asked. She took off the bandaged and looked...rubbed...and asked, "Did they have a hard time drawing you today?" "No," I answered..."only you!"