MS Update 2-24-09
Dear friends and family -
Well, nearly another month has gone by since I last wrote. Please forgive me for the limited emailing and phone calling I have been doing. Sometimes I only have the energy to talk to a couple of people on the phone, and my mom and sister often win that battle! I am gradually improving, though, and starting to get back to calling people and starting to organize visits with people and attempt to have a social life again!
Since my last email I have officially gone up to and stayed at the full dose of my Betaseron. I have also been trying some other approaches to managing my side effects, and things have started to improve. Now the worst things that I am dealing with are pain, insomnia, and headaches that last for days. But I may be improving at least the pain and insomnia portions of that.
The other problem that I have is that I have major injection-site reactions. I inject in 8 places - my upper thighs (both legs), abdomen (both sides), backs of both arms, and upper buttocks/hip areas. Within a couple of days of each injection, a red welt forms that is larger than a half-dollar surrounding the injection. I have talked with the drug company and every technique they have told me to try has failed to not produce this red welt. The welts last for about 2 months now - they get very itchy, and eventually the skin dries out and turns purple and fades away. The tricky part is that each welt, larger than a half dollar, takes at least 2 months to disappear, and I am not supposed to inject anywhere that is red - so I am running out of space to inject! If anyone has ever had any luck with injection sites not causing such serious reactions, please let me know. I also go through tubes and tubes of hydrocortisone cream for the itchiness and drying out of the skin. If anyone knows of anything better, also please let me know!
Next week I will go in to have my blood drawn to check my liver function, as there is a risk of my medication causing liver problems. After that blood draw I will be seeing the neurologist again for my first follow-up appointment since starting the Betaseron. I will be sure to let everyone know how that goes - but it will hopefully be uneventful.
Steve and I did attend our first MS support group meeting, although it was a very difficult event - I was the only newly diagnosed participant there, and the rest of the people with MS were much more disabled, and a lot of them seemed to have cognitive issues as well as physical issues. I cried through it - more out of fear that that was all I had to look forward to. The people were wonderful, but I don't know if I am ready psychologically to face that much disability - they have all had MS for far longer and have had very little success with treatment. I am going to find a group of newly diagnosed people and give that a shot as well....
On to fun things: As most of you may have heard through the grapevine, Steve and I did spend a long Valentine's Day/President's Day weekend in Las Vegas! We did not, however, get hitched. I think because it was Valentine's Day, EVERYBODY was doing it in Las Vegas, and it totally turned me off to the idea. I've never been one to do what EVERYBODY else is doing! So have no fear, there is no news that anyone missed out on....
We did, however, have a fantastic time. We walked miles and miles, exploring the Strip. We had the most amazing buffet on earth at Paris Las Vegas. If you ever go to Vegas, that is one buffet worth the wait time....for real. You have to do it. They have made-to-order crepes. And they even had a crab that I really really liked - something called a Jonah crab.
Beware the card-snappers along the strip - they're handing out baseball-card style collector's cards for working women in Las Vegas - if you reach out to take one, for posterity's sake, you will be swarmed by a large number of individuals piling the cards into your hands. Unfortunately, the ground is completely littered with these little business cards of naked women.
We were lucky enough to meet up with my cousins Bridget and Aubrey Quick and my Uncle Pat, who were in town for a huge international soccer tournament that they made it to the championship game in! The 5 of us went to the Mirage and checked out the dolphins (including a baby) in the Dolphin Habitat, and we saw the white lions and white tigers belonging to Siegfriend and Roy at their "Secret Garden". It was really awesome. I totally recommend it....
And the huge best most awesome surprise of the weekend was when my Uncle Pat lovingly and generously bought tickets for Steve and me to see the Beatles Love show by Cirque du Soleil at the Mirage! They were sold out for Valentine's Day, but he got us tickets for Sunday night - talk about AMAZING!!!!!!!!!!! I've never seen anything like that in my life - it was just out-of-this-world beautiful and phenomenal and I was literally on the edge of my seat and singing along with all the wonderful Beatles songs - YOU ALL MUST GO!!! THANK YOU THANK YOU THANK YOU UNCLE PAT!!!!! The best birthday gift ever!
For our Valentine's treat, Steve and I did a gondola ride at the Venetian, which was lovely, and our gondolier sang with a beautiful voice and it was very romantic, even if it was a bit chilly. By the way, they do have winter in Las Vegas, and it's not warm.
On Sunday we went to a timeshare presentation (which is how we stayed at the Westin for free) and they gave us free money for gambling and dinner which was awesome. We rode the roller coaster at New York New York, saw the Bodies exhibit at Luxor, then went to see Love...that was the crowning glory. Afterward, we met up with some of Steve's college friends for drinks at an Irish pub, though by then I learned what can happen when I push too far too hard with this disease.... It seems that without getting enough sleep and walking to the max and going nonstop for 2 days, by Sunday night I was having some symptoms that kind of freaked me out. I was just physically exhausted and they have thankfully cleared up with rest, but it was a bit frightening late Sunday night.
Monday was raining and cold, so we took it easy riding rides inside the Adventuredome at Circus Circus and gambling with our free money at Harrah's. Steve and I played blackjack at a $5 table and together won $30! We did a lot less walking and my symptoms improved tremendously and have continued to do so....
Overall, it was a great trip....you can check out our photos at:share.shutterfly.com/action/welcome?sid=0FbtmblkxYsRI I haven't yet scanned the cheesy souvenir photo of us with Uncle Pat, Bridget and Aubrey but will do that soon.
Now, moving forward. To celebrate my birthday (the 28th), Steve and I are heading to Grand Rapids Friday night to see the Wallace/Christian family band play at the Ritz Koney bar....you all should go! Let me know if you'll be in the Grand Rapids area and I will send you the details of the gig (you know all the players - Amber (Wallace) Christian, Angie Wallace, Marcus Christian, Angie's fiance Vinnie Pulera, possibly Drew Wallace). Steve thought that he might be leaving on Saturday, my birthday, to go back to work, but now it sounds like he might still be laid off until May, so that kind of changes things a bit.
But I am trying to start having a social schedule - so Friday is GR and anyone we can see there, next weekend I hope to see Carrie in Wisconsin, and I need to see my former coworkers soon and hope to make a trip up north maybe at the end of March.... Looking forward to starting to live a little more!
Thank you all for your prayers and thoughts and love and messages and I love you all and couldn't do any of this without you. You are all my lifeline.... Love you lots and lots...Kate
Well, nearly another month has gone by since I last wrote. Please forgive me for the limited emailing and phone calling I have been doing. Sometimes I only have the energy to talk to a couple of people on the phone, and my mom and sister often win that battle! I am gradually improving, though, and starting to get back to calling people and starting to organize visits with people and attempt to have a social life again!
Since my last email I have officially gone up to and stayed at the full dose of my Betaseron. I have also been trying some other approaches to managing my side effects, and things have started to improve. Now the worst things that I am dealing with are pain, insomnia, and headaches that last for days. But I may be improving at least the pain and insomnia portions of that.
The other problem that I have is that I have major injection-site reactions. I inject in 8 places - my upper thighs (both legs), abdomen (both sides), backs of both arms, and upper buttocks/hip areas. Within a couple of days of each injection, a red welt forms that is larger than a half-dollar surrounding the injection. I have talked with the drug company and every technique they have told me to try has failed to not produce this red welt. The welts last for about 2 months now - they get very itchy, and eventually the skin dries out and turns purple and fades away. The tricky part is that each welt, larger than a half dollar, takes at least 2 months to disappear, and I am not supposed to inject anywhere that is red - so I am running out of space to inject! If anyone has ever had any luck with injection sites not causing such serious reactions, please let me know. I also go through tubes and tubes of hydrocortisone cream for the itchiness and drying out of the skin. If anyone knows of anything better, also please let me know!
Next week I will go in to have my blood drawn to check my liver function, as there is a risk of my medication causing liver problems. After that blood draw I will be seeing the neurologist again for my first follow-up appointment since starting the Betaseron. I will be sure to let everyone know how that goes - but it will hopefully be uneventful.
Steve and I did attend our first MS support group meeting, although it was a very difficult event - I was the only newly diagnosed participant there, and the rest of the people with MS were much more disabled, and a lot of them seemed to have cognitive issues as well as physical issues. I cried through it - more out of fear that that was all I had to look forward to. The people were wonderful, but I don't know if I am ready psychologically to face that much disability - they have all had MS for far longer and have had very little success with treatment. I am going to find a group of newly diagnosed people and give that a shot as well....
On to fun things: As most of you may have heard through the grapevine, Steve and I did spend a long Valentine's Day/President's Day weekend in Las Vegas! We did not, however, get hitched. I think because it was Valentine's Day, EVERYBODY was doing it in Las Vegas, and it totally turned me off to the idea. I've never been one to do what EVERYBODY else is doing! So have no fear, there is no news that anyone missed out on....
We did, however, have a fantastic time. We walked miles and miles, exploring the Strip. We had the most amazing buffet on earth at Paris Las Vegas. If you ever go to Vegas, that is one buffet worth the wait time....for real. You have to do it. They have made-to-order crepes. And they even had a crab that I really really liked - something called a Jonah crab.
Beware the card-snappers along the strip - they're handing out baseball-card style collector's cards for working women in Las Vegas - if you reach out to take one, for posterity's sake, you will be swarmed by a large number of individuals piling the cards into your hands. Unfortunately, the ground is completely littered with these little business cards of naked women.
We were lucky enough to meet up with my cousins Bridget and Aubrey Quick and my Uncle Pat, who were in town for a huge international soccer tournament that they made it to the championship game in! The 5 of us went to the Mirage and checked out the dolphins (including a baby) in the Dolphin Habitat, and we saw the white lions and white tigers belonging to Siegfriend and Roy at their "Secret Garden". It was really awesome. I totally recommend it....
And the huge best most awesome surprise of the weekend was when my Uncle Pat lovingly and generously bought tickets for Steve and me to see the Beatles Love show by Cirque du Soleil at the Mirage! They were sold out for Valentine's Day, but he got us tickets for Sunday night - talk about AMAZING!!!!!!!!!!! I've never seen anything like that in my life - it was just out-of-this-world beautiful and phenomenal and I was literally on the edge of my seat and singing along with all the wonderful Beatles songs - YOU ALL MUST GO!!! THANK YOU THANK YOU THANK YOU UNCLE PAT!!!!! The best birthday gift ever!
For our Valentine's treat, Steve and I did a gondola ride at the Venetian, which was lovely, and our gondolier sang with a beautiful voice and it was very romantic, even if it was a bit chilly. By the way, they do have winter in Las Vegas, and it's not warm.
On Sunday we went to a timeshare presentation (which is how we stayed at the Westin for free) and they gave us free money for gambling and dinner which was awesome. We rode the roller coaster at New York New York, saw the Bodies exhibit at Luxor, then went to see Love...that was the crowning glory. Afterward, we met up with some of Steve's college friends for drinks at an Irish pub, though by then I learned what can happen when I push too far too hard with this disease.... It seems that without getting enough sleep and walking to the max and going nonstop for 2 days, by Sunday night I was having some symptoms that kind of freaked me out. I was just physically exhausted and they have thankfully cleared up with rest, but it was a bit frightening late Sunday night.
Monday was raining and cold, so we took it easy riding rides inside the Adventuredome at Circus Circus and gambling with our free money at Harrah's. Steve and I played blackjack at a $5 table and together won $30! We did a lot less walking and my symptoms improved tremendously and have continued to do so....
Overall, it was a great trip....you can check out our photos at:share.shutterfly.com/action/welcome?sid=0FbtmblkxYsRI I haven't yet scanned the cheesy souvenir photo of us with Uncle Pat, Bridget and Aubrey but will do that soon.
Now, moving forward. To celebrate my birthday (the 28th), Steve and I are heading to Grand Rapids Friday night to see the Wallace/Christian family band play at the Ritz Koney bar....you all should go! Let me know if you'll be in the Grand Rapids area and I will send you the details of the gig (you know all the players - Amber (Wallace) Christian, Angie Wallace, Marcus Christian, Angie's fiance Vinnie Pulera, possibly Drew Wallace). Steve thought that he might be leaving on Saturday, my birthday, to go back to work, but now it sounds like he might still be laid off until May, so that kind of changes things a bit.
But I am trying to start having a social schedule - so Friday is GR and anyone we can see there, next weekend I hope to see Carrie in Wisconsin, and I need to see my former coworkers soon and hope to make a trip up north maybe at the end of March.... Looking forward to starting to live a little more!
Thank you all for your prayers and thoughts and love and messages and I love you all and couldn't do any of this without you. You are all my lifeline.... Love you lots and lots...Kate
posted by Kate @ 9:45 PM
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