Since I was a little girl (over 40 years, now), my Labor Day tradition has been to watch at least a part of the Jerry Lewis MDA Telethon. I always try to see the end, so I know if that magic 'one dollar more' has been reached. In the past, I've answered phones at telethons, walked around the neighborhood and collected money, and done other fundraising activities.
For the past several years, the fibro has kept me from doing anything more than watch the telethon, but that's changing, thanks to the new med. Next year, I'll be participating in the local Stride-N-Ride to raise funds for research. I just got my fundraising webpage set up, and I've set up a group on Ravelry for people from my local area (Pittsburgh, PA) to join my team. Please, if you know anything about MD, if you know someone effected by it, if you know someone with kids (healthy or not!), if you just care about great causes, donate! My page is linked from the title of this post, and I'll add it at the end. Locally, research costs $82/minute (the national average is $87/minute), and my goal is to raise at least enough to pay for 5 minutes of research. Please help me reach my goal!
Thanks in advance!
Beth's Fundraising Page
Wednesday, September 16, 2009
Friday, September 4, 2009
More Pain Management
First things first -- my insurance did give me pre-approval for the Savella! For an entire year! And for whatever dosage I was prescribed! There was rejoicing the day that letter arrived, let me tell ya!
I had another appointment with Dr. Arrogant last week -- he wants his patients to see him every 4 weeks. My pain level at that point was averaging 4 1/2 to 6 on my personal scale, with occasional forays into the 7 range -- better, but not as good as I want.
So, he came into the exam room, sat down at the desk and proceeded to talk to me without ever really looking at me. Asked about my pain level, made mumbled noises that I think were supposed to be encouraging, and was very obviously going to leave the room without asking me how I felt about the improvement and if I thought it was enough. So I said 'There has been an improvement, but I'd like to see more. Could we try a higher dosage of Savella?' Now, understand, I had done my research, and I knew that the drug could be prescribed up to a dose of 100 mg twice a day. I wanted to try 150 mg and see if that was enough. His reply? 'Well, the recommended dose is 50 mg twice a day,' -- the dose I was already taking. So I told him that I'd done some research and that it could be prescribed at a higher dose. He told me he'd have to check the information! Now, what doctor prescribes a med without knowing that it's offered at higher doses? The upshot of it all is that I left the office with a script for 100 mg twice a day. I'd be looking for a different pain specialist, but the pre-approval is only for him, and chances are that I wouldn't get pre-approved again if I changed doctors.I've been on the higher dose for 3 days now, and I think I'm seeing an improvement. It's been hard to tell because we went to a ferret show last weekend, and it always takes several days for me to completely recover from one of them. But in the past, it's taken at least a week, and I did some laundry today and lifted some heavy things, and I don't feel like my body wants revenge for it, so I think things may be looking up.
And in other news, my Threes Triangular Shawl is now listed at Ravelry! People seem to like it -- lots of nice compliments, and over 20 people have marked it as a favorite!
I had another appointment with Dr. Arrogant last week -- he wants his patients to see him every 4 weeks. My pain level at that point was averaging 4 1/2 to 6 on my personal scale, with occasional forays into the 7 range -- better, but not as good as I want.
So, he came into the exam room, sat down at the desk and proceeded to talk to me without ever really looking at me. Asked about my pain level, made mumbled noises that I think were supposed to be encouraging, and was very obviously going to leave the room without asking me how I felt about the improvement and if I thought it was enough. So I said 'There has been an improvement, but I'd like to see more. Could we try a higher dosage of Savella?' Now, understand, I had done my research, and I knew that the drug could be prescribed up to a dose of 100 mg twice a day. I wanted to try 150 mg and see if that was enough. His reply? 'Well, the recommended dose is 50 mg twice a day,' -- the dose I was already taking. So I told him that I'd done some research and that it could be prescribed at a higher dose. He told me he'd have to check the information! Now, what doctor prescribes a med without knowing that it's offered at higher doses? The upshot of it all is that I left the office with a script for 100 mg twice a day. I'd be looking for a different pain specialist, but the pre-approval is only for him, and chances are that I wouldn't get pre-approved again if I changed doctors.I've been on the higher dose for 3 days now, and I think I'm seeing an improvement. It's been hard to tell because we went to a ferret show last weekend, and it always takes several days for me to completely recover from one of them. But in the past, it's taken at least a week, and I did some laundry today and lifted some heavy things, and I don't feel like my body wants revenge for it, so I think things may be looking up.
And in other news, my Threes Triangular Shawl is now listed at Ravelry! People seem to like it -- lots of nice compliments, and over 20 people have marked it as a favorite!
Wednesday, August 12, 2009
Update on Pain Management
It's been almost 2 weeks since my appointment at the pain management center. First, let me say that the doctor did not impress me. He's arrogant and obnoxious, and talked down to me until my partner made it clear that she was a veterinarian. I.E., a medical professional that couldn't be bullshitted.
That being said, he definitely knows his stuff as far as fibro goes. He did the pressure test to confirm that I have it (no doubts there!), and then he started telling me about a new drug, Savella. Very few side effects, and those show up in a small minority of the people on the drug. He gave me a prescription and a coupon for a free titration pack to get started with. It took a few days to get started -- no one carries the titration pack in stock, and finding a pharmacy to take the coupon was tricky. Say what you like about Wal-Mart, they took the coupon!
So, today is day 10 on Savella. It's my third day at the full dose (5o mg twice a day), and yesterday I did something I haven't been able to do for a long time.
One of my big jobs around the house is cleaning ferret cages. It's physically demanding, and for the past two years it's been such a painful thing to do that I haven't done it any where near as regularly as I should, especially the part where I change the bedding, which frequently requires getting down on my hands and knees to clean the lower part of the cage. When I've done it, it's taken an hour and a half to do one average sized cage -- the bigger ones have been impossible! Yesterday, I cleaned an average cage in 45 minutes, including a full bedding change! I used a foam kneeling pad, where I've been using both that and strap-on knee pads. I was able to get up and down fairly easily. And while I'm more sore today than I was yesterday, I should still be able to clean another cage!
So, while the doctor is not a fun person to be around, he does know what he's talking about. And that's what I really care about!
That being said, he definitely knows his stuff as far as fibro goes. He did the pressure test to confirm that I have it (no doubts there!), and then he started telling me about a new drug, Savella. Very few side effects, and those show up in a small minority of the people on the drug. He gave me a prescription and a coupon for a free titration pack to get started with. It took a few days to get started -- no one carries the titration pack in stock, and finding a pharmacy to take the coupon was tricky. Say what you like about Wal-Mart, they took the coupon!
So, today is day 10 on Savella. It's my third day at the full dose (5o mg twice a day), and yesterday I did something I haven't been able to do for a long time.
One of my big jobs around the house is cleaning ferret cages. It's physically demanding, and for the past two years it's been such a painful thing to do that I haven't done it any where near as regularly as I should, especially the part where I change the bedding, which frequently requires getting down on my hands and knees to clean the lower part of the cage. When I've done it, it's taken an hour and a half to do one average sized cage -- the bigger ones have been impossible! Yesterday, I cleaned an average cage in 45 minutes, including a full bedding change! I used a foam kneeling pad, where I've been using both that and strap-on knee pads. I was able to get up and down fairly easily. And while I'm more sore today than I was yesterday, I should still be able to clean another cage!
So, while the doctor is not a fun person to be around, he does know what he's talking about. And that's what I really care about!
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