New Year 1/4/09
Dear friends and family -
I added a quitefew names to the email list - per request by some. I am including the last email I wrote with this one to make sure everyone gets up to speed. Although I must admit that it has been an awfully long time since I wrote an email. Between the way I have been feeling and the holidays, sitting at the computer and writing hasn't been something that I have been doing. My apologies for not writing sooner.
First of all, Happy New Year to everyone and thank you for your love, thoughts, prayers, emails, calls, and cards. I wish all the best for everyone in 2009 - hopefully it brings health, peace, and love to you all. Even if those things are relative - healthier lifestyles, healthier moments, peace with your family and loved ones if not worldwide, love of your family and friends. I hope that you all had a very merry holiday season.
In spite of all things going on internally, it was an joyous holiday for the Lindsays. We did a very short (and very busy) trip to Wisconsin for Christmas, then an even shorter visit to Cheboygan, and then I returned with my sister Mo to Chicago and she stayed for a couple nights before she returned to Philadelphia. Steve, on the other hand, went on a last-minute vacation with his parents, brother Norm, and two nephews to Belize. The trip was planned with too short notice for me to go (officially planned on the 22nd and they departed the 29th), but they are having a wonderful time and will return sometime late tomorrow night.
Santa was good to me this year - giving me snow shoes and cross country skiis so that I could exercise and try to get fit this winter despite the cold, but alas, by the time I returned to Chicago the 3 feet of snow that I had left behind had all melted. So now I am just cold and snow-less! But at least I have a Nintendo Wii Fit!
Shortly before Christmas, I had a spinal MRI - both of my cervical and thoracic spines. There were 2 reasons to perform this MRI - one was to have a baseline image to compare future images to, and the other was to see whether the MS had attacked other parts of my central nervous system. In a word, YES, it had. The bad news is that there are scars that provide evidence of past lesions, probably from several years worth of relapses, and the scars are in both major parts of my spinal cord area (cervical and thoracic). The good news is that none of the lesions lit up like a Christmas tree as a result of the contrasting dye - what made the spots in my brain glow white. That means that the lesions are not new lesions - they are not active at the time of the MRI. Some of them could have been active lesions from the flare-up that sent me to the doctor and to the diagnosis from the first place, and they could have healed from the steroids and the time lapse between that last flare-up and the time of the MRI, but none were active now. So that's a good thing.
Another bit of good-ish news - early in December I had a blood draw, to rule out anything else other than Multiple Sclerosis, and several things came up abnormal with my platelets and red blood cells. This was cause for alarm, in my opinion, but the neurologist decided that the anomalies may have been caused by the super steroids that I was on. We waited until 3 weeks after I completed the steroid treatment and did another blood draw on New Year's Eve. The results came back - everything normalized, so the steroids were indeed the culprit. This was a relief - I didn't want to think I had any other issues in league with the MS.
Now, about treatment. I wish I could say that I was one of the few people who started treatment on beta interferon without a hitch and without side effects, but unfortunately I am not. In fact, I am pretty sure that "interferon" is the Latin word for "hell". The first set of side effects were horrific - fever, achiness everywhere, headache, nausea, and vomiting....thankfully my brilliant mother came up with a great idea. She suggested that I take meclizine, used for motion sickness, an hour before I give myself the injection. Now I no longer experience the nausea and vomiting! The fevers had died down somewhat, but I still have tremendous achiness and horrible headaches, leading to absolutely no sleep on injection nights. The worst part is that I am still only taking half the dose that I will have to be on eventually. In fact, the side effects are so bad that even though I was supposed to increase my dose tonight to 3/4 of the full dose, the doctor has asked that I hold off and stay at half dose for a while longer so see if the side effects subside.
Basically I have horrible horrible nights on injection nights. I don't get any sleep then, so I am exhausted the following day. I try to get caught up on doing things on the injection day (the day leading up to an injection) when I have a little sleep on those non-injection nights. I think that I am guilty of perhaps trying to do too much to make up for the bad days and find that I might just wear myself out. On injection nights, I feel so awful and so angry that it doesn't help the situation. I think the anger is just out of sheer frustration - being in too much pain to sleep and wishing that I had a different life.
I also seem to develop "injection site reactions" in every location that I inject the medication into. Unfortunately I am not supposed to inject into areas that are red, but they all are and I am running out of non-red spaces!
I have to say, though, that I am proud of Steve for the injections that he has done, and Maureen did one on Christmas Eve, and my Dad did one a couple days later. It's a family affair! And if you come and visit me, maybe you can participate in injecting too!
It's important to know, though, that on the good days, I try to really have good days. The apartment is really feeling like home now, because I have been busting my butt to unpack and organize and make it feel much more like home. I unpacked my books on New Year's day because I actually didn't do anything but relax on New Year's Eve, and managed to fill 3 5-shelf bookcases and still have loads of books in storage and a box to donate to the local library. Unpacking my books was desperately pleasing - I forgot how happy books make me. So that was a bonus.
I also really enjoyed being with my family, even though it never seems like enough time. I am looking forward to having visitors, although I discovered this weekend that I am not yet ready to go visiting myself because of the side effects. But all visitors are welcome and I hope that you will consider a trip to Chicago in the coming months!
That's a long-winded update - I'll keep you posted on things as they progress. Thank you so much for your emails, phone calls, and cards. They help so immensely - especially when I am feeling really really bad physically and mentally.... I will respond to people personally - it just will take time to get to everyone - forgive me! Lots of love,Kate
I added a quitefew names to the email list - per request by some. I am including the last email I wrote with this one to make sure everyone gets up to speed. Although I must admit that it has been an awfully long time since I wrote an email. Between the way I have been feeling and the holidays, sitting at the computer and writing hasn't been something that I have been doing. My apologies for not writing sooner.
First of all, Happy New Year to everyone and thank you for your love, thoughts, prayers, emails, calls, and cards. I wish all the best for everyone in 2009 - hopefully it brings health, peace, and love to you all. Even if those things are relative - healthier lifestyles, healthier moments, peace with your family and loved ones if not worldwide, love of your family and friends. I hope that you all had a very merry holiday season.
In spite of all things going on internally, it was an joyous holiday for the Lindsays. We did a very short (and very busy) trip to Wisconsin for Christmas, then an even shorter visit to Cheboygan, and then I returned with my sister Mo to Chicago and she stayed for a couple nights before she returned to Philadelphia. Steve, on the other hand, went on a last-minute vacation with his parents, brother Norm, and two nephews to Belize. The trip was planned with too short notice for me to go (officially planned on the 22nd and they departed the 29th), but they are having a wonderful time and will return sometime late tomorrow night.
Santa was good to me this year - giving me snow shoes and cross country skiis so that I could exercise and try to get fit this winter despite the cold, but alas, by the time I returned to Chicago the 3 feet of snow that I had left behind had all melted. So now I am just cold and snow-less! But at least I have a Nintendo Wii Fit!
Shortly before Christmas, I had a spinal MRI - both of my cervical and thoracic spines. There were 2 reasons to perform this MRI - one was to have a baseline image to compare future images to, and the other was to see whether the MS had attacked other parts of my central nervous system. In a word, YES, it had. The bad news is that there are scars that provide evidence of past lesions, probably from several years worth of relapses, and the scars are in both major parts of my spinal cord area (cervical and thoracic). The good news is that none of the lesions lit up like a Christmas tree as a result of the contrasting dye - what made the spots in my brain glow white. That means that the lesions are not new lesions - they are not active at the time of the MRI. Some of them could have been active lesions from the flare-up that sent me to the doctor and to the diagnosis from the first place, and they could have healed from the steroids and the time lapse between that last flare-up and the time of the MRI, but none were active now. So that's a good thing.
Another bit of good-ish news - early in December I had a blood draw, to rule out anything else other than Multiple Sclerosis, and several things came up abnormal with my platelets and red blood cells. This was cause for alarm, in my opinion, but the neurologist decided that the anomalies may have been caused by the super steroids that I was on. We waited until 3 weeks after I completed the steroid treatment and did another blood draw on New Year's Eve. The results came back - everything normalized, so the steroids were indeed the culprit. This was a relief - I didn't want to think I had any other issues in league with the MS.
Now, about treatment. I wish I could say that I was one of the few people who started treatment on beta interferon without a hitch and without side effects, but unfortunately I am not. In fact, I am pretty sure that "interferon" is the Latin word for "hell". The first set of side effects were horrific - fever, achiness everywhere, headache, nausea, and vomiting....thankfully my brilliant mother came up with a great idea. She suggested that I take meclizine, used for motion sickness, an hour before I give myself the injection. Now I no longer experience the nausea and vomiting! The fevers had died down somewhat, but I still have tremendous achiness and horrible headaches, leading to absolutely no sleep on injection nights. The worst part is that I am still only taking half the dose that I will have to be on eventually. In fact, the side effects are so bad that even though I was supposed to increase my dose tonight to 3/4 of the full dose, the doctor has asked that I hold off and stay at half dose for a while longer so see if the side effects subside.
Basically I have horrible horrible nights on injection nights. I don't get any sleep then, so I am exhausted the following day. I try to get caught up on doing things on the injection day (the day leading up to an injection) when I have a little sleep on those non-injection nights. I think that I am guilty of perhaps trying to do too much to make up for the bad days and find that I might just wear myself out. On injection nights, I feel so awful and so angry that it doesn't help the situation. I think the anger is just out of sheer frustration - being in too much pain to sleep and wishing that I had a different life.
I also seem to develop "injection site reactions" in every location that I inject the medication into. Unfortunately I am not supposed to inject into areas that are red, but they all are and I am running out of non-red spaces!
I have to say, though, that I am proud of Steve for the injections that he has done, and Maureen did one on Christmas Eve, and my Dad did one a couple days later. It's a family affair! And if you come and visit me, maybe you can participate in injecting too!
It's important to know, though, that on the good days, I try to really have good days. The apartment is really feeling like home now, because I have been busting my butt to unpack and organize and make it feel much more like home. I unpacked my books on New Year's day because I actually didn't do anything but relax on New Year's Eve, and managed to fill 3 5-shelf bookcases and still have loads of books in storage and a box to donate to the local library. Unpacking my books was desperately pleasing - I forgot how happy books make me. So that was a bonus.
I also really enjoyed being with my family, even though it never seems like enough time. I am looking forward to having visitors, although I discovered this weekend that I am not yet ready to go visiting myself because of the side effects. But all visitors are welcome and I hope that you will consider a trip to Chicago in the coming months!
That's a long-winded update - I'll keep you posted on things as they progress. Thank you so much for your emails, phone calls, and cards. They help so immensely - especially when I am feeling really really bad physically and mentally.... I will respond to people personally - it just will take time to get to everyone - forgive me! Lots of love,Kate
posted by Kate @ 9:35 PM
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