You guys are awesome! Don't think you were fooling me by sending us a box of cookies and a pkg of Oreo's. Although they are yummy, and Darrin (and Chase) are loving 'em. Not that I haven't eaten any either.
We have company in this weekend, Big Ken, a friend of Darrin's from Kansas. Yes. He's tall! 6' 7". We of the little people world are in great awe of such a strapping fella! We have put the meat and cheese tray you guys sent to good use.
If you are worried about sending too much food, don't! We've enjoyed it and it's quickly dwindling.
I'm very fortunate to have worked with all of you and it's times like this when I realize how lucky I am. Darrin keeps reminding me to let people help and know what's going on, that everyone wants to help and that by letting them give, it gives back to them. I'm going to do my best to let this happen.
And yes, I'm bawling. Well, crying at least.
Thank You!
Merry Christmas and Happy New Year!
Saturday, December 22, 2007
Dec 22, 2007 MRI results and Dr visit
We went to see the Dr. at his methodist office, not the clinic, which was nice in that we didn't have to wait til next week to see him, but frustrating at the same time because the doctor that wanted us to come is was the "protege" and not Bertorini. Of course, I was worried because he wanted me to come in to talk about the MRI results and was now going to tell me something else was wrong. Fortunately, he just didn't understand what was going on. Unluckily for him I was ready and conscious (unmedicated) enough to talk to him. Matter of fact, Darrin had asked me was he going to be the good guy, or the bad guy? I took the bad guy. I was still polite but had a list to get through and wanted to make sure that the 5 staff; 2 nurses; 2 doctors and 1 receptionist all agree to the call in protocol that we have to go through. I wanted the "protege" to understand that he quadrupled the Rilutek and that I knew it. This is what I believe led to the headaches, crazy blood pressure and 2 hospital visits!!!!
Any hoo....the results of the MRI are good, in that they found nothing wrong...no where, that could cause a headache and nothing wrong for any other purpose. So this leads to what's the treatment plan? Bertorini came in the office and once again was the MAN. He ordered an MRV, which checks the blood vessels of the brain to make sure there is no clot. He recognized that I was having the headaches less often since I was on a steroid for my cold. He also realized that I was having side effects from the quinine and depacote. So I was thrilled when he agreed with the concept of taking me off all this junk, not that I was going to keep taking them anyway. I also am not taking any pain medication, OTC or RX, unless I'm having a severe headache. I slowly want to get off these meds. I will never again take a pill without knowing exactly how it should be taken, i.e. my normal self would have done that, but lately I have failed to follow my own advice. He did RX a steroid, at a higher dose than I was on, and I feel great. Which I'm aware is the steriod, but I'm grateful that I can control the head aches with a non-narcotic.
I still have numbness in the right leg, which is bizarre. We're just working with it. It comes and goes, with no known triggers.
I've been deliberating over whether I should make an appt for the ALS center in Nashville, at Vanderbilt. An ALS center for excellence. I'm done debating and will be setting up an appt for after the first if the year.
Any hoo....the results of the MRI are good, in that they found nothing wrong...no where, that could cause a headache and nothing wrong for any other purpose. So this leads to what's the treatment plan? Bertorini came in the office and once again was the MAN. He ordered an MRV, which checks the blood vessels of the brain to make sure there is no clot. He recognized that I was having the headaches less often since I was on a steroid for my cold. He also realized that I was having side effects from the quinine and depacote. So I was thrilled when he agreed with the concept of taking me off all this junk, not that I was going to keep taking them anyway. I also am not taking any pain medication, OTC or RX, unless I'm having a severe headache. I slowly want to get off these meds. I will never again take a pill without knowing exactly how it should be taken, i.e. my normal self would have done that, but lately I have failed to follow my own advice. He did RX a steroid, at a higher dose than I was on, and I feel great. Which I'm aware is the steriod, but I'm grateful that I can control the head aches with a non-narcotic.
I still have numbness in the right leg, which is bizarre. We're just working with it. It comes and goes, with no known triggers.
I've been deliberating over whether I should make an appt for the ALS center in Nashville, at Vanderbilt. An ALS center for excellence. I'm done debating and will be setting up an appt for after the first if the year.
Tuesday, December 18, 2007
December 18th - We're back on track
Thanks to everyone that has sent us prayers, food and support during the past two weeks.
For those that don't know, I was in the hospital for the first week of December. I was having what the doctors think was a reaction to the ALS medication Rilutek. I was experiencing violent headaches and lost function of my right leg. After I was discharged on Monday, December 10th (Darrin and I's second wedding anniversary), we went home to realize that we were in no way prepared for my needs. Tuesday night I went back to the hospital with the worst headache so far. They were able give me enough pain medication to get me out of the hospital and to the ALS clinic to see Dr. Bertorini, who I hadn't seen while I was in the hospital because he treats out of Methodist hospital. NOTHING was going to keep me from seeing him that day. Every doctor we saw at Baptist, which included the doctor that originally diagnosed me, questioned why I wasn't being treated by Bertorini??? Urgh, I'll save everyone from my personal beliefs on managed care. Bertorini adjusted the meds the hospital doctors had changed, but failed to send me home with RX's for; scheduled an MRI at the hospital (where I had been staying for 6 days and nobody ordered one); fitted me for a power wheelchair; ordered a hospital bed and a lift.
After all that, on Thursday function slowly came back to my right leg. Yippeeee! We have been quickly trying to get things to a more manageable lifestyle. We've hired an amazing lady, Shirley, who will be staying with me and Deke during the day. She'll provide what's called companion care, and which I refer to as another me, i.e. cooks, cleans, runs errands, will take me to the doctor and help care for Deke. Already she's been a huge benefit and really answered our prayers, as well as hers. She had been working for a company providing these services to multiple clients, throughout the city. She had wanted one family, close to home, full-time. Seems like a perfect fit! Of course, Deke has worked his charm on her.
Thanks again everyone!
For those that don't know, I was in the hospital for the first week of December. I was having what the doctors think was a reaction to the ALS medication Rilutek. I was experiencing violent headaches and lost function of my right leg. After I was discharged on Monday, December 10th (Darrin and I's second wedding anniversary), we went home to realize that we were in no way prepared for my needs. Tuesday night I went back to the hospital with the worst headache so far. They were able give me enough pain medication to get me out of the hospital and to the ALS clinic to see Dr. Bertorini, who I hadn't seen while I was in the hospital because he treats out of Methodist hospital. NOTHING was going to keep me from seeing him that day. Every doctor we saw at Baptist, which included the doctor that originally diagnosed me, questioned why I wasn't being treated by Bertorini??? Urgh, I'll save everyone from my personal beliefs on managed care. Bertorini adjusted the meds the hospital doctors had changed, but failed to send me home with RX's for; scheduled an MRI at the hospital (where I had been staying for 6 days and nobody ordered one); fitted me for a power wheelchair; ordered a hospital bed and a lift.
After all that, on Thursday function slowly came back to my right leg. Yippeeee! We have been quickly trying to get things to a more manageable lifestyle. We've hired an amazing lady, Shirley, who will be staying with me and Deke during the day. She'll provide what's called companion care, and which I refer to as another me, i.e. cooks, cleans, runs errands, will take me to the doctor and help care for Deke. Already she's been a huge benefit and really answered our prayers, as well as hers. She had been working for a company providing these services to multiple clients, throughout the city. She had wanted one family, close to home, full-time. Seems like a perfect fit! Of course, Deke has worked his charm on her.
Thanks again everyone!
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