Oh, my wonderful, wonderful friends. Jason and I are so grateful for all the help everyone has given us this week. I don't know what I would have done without you all. Helping to watch the kids, cooking us meals- giving me hugs! I am blessed to have such fantastic friends around me.
On the treatment front....
Instead of spreading the infusions out over 5 days, I received the same amount of medicine in a 2 day course. This is the first time I have ever had so much IVIg in one sitting- and to be honest, it is kind of kicking my butt. I don't want to complain. If this works, these side effects will be completely worth it. So if you all don't hear from me, it is probably because my head hurts too much to get on the phone. It is kind of hard to focus on the screen right now with out upsetting my stomach, so I am going to sign off. Just know that I think this is working, and I am thinking of all of you!
Hugs. xoxox
Thursday, September 27, 2007
Monday, September 24, 2007
Once Again....
Well folks, the pheresis didn't work. So the Guru and I have decided to give the IVIg another try. I am waiting to hear back how many we are planning on- but the last call was for 5. Not an easy task finding childcare for 2 monkeys (who are a bit cranky with mommy sick for so long now) for 5 days straight.
Jason is able to cover some of it- great husband and daddy that he is! My wonderful cousin, Margo, is going to come sweeping in and save the day for almost all of the rest of the time! And my awesome friend Michelle is going to cover when she can't be here. I will tell you something, it is truly a gift to be surrounded by such caring and fantastic people. In fact, Michelle just called me and told me that there is no need for me to cook all week- that our friends are going to take care of it. I'll tell you, it doesn't get better than that. Thank you all so much.
I will keep everyone updated on the blog here. If you have any questions, feel free to email me or call. I might not feel like talking, but I will do my best to make sure everyone who cares to be is informed of what is happening.
Jason is able to cover some of it- great husband and daddy that he is! My wonderful cousin, Margo, is going to come sweeping in and save the day for almost all of the rest of the time! And my awesome friend Michelle is going to cover when she can't be here. I will tell you something, it is truly a gift to be surrounded by such caring and fantastic people. In fact, Michelle just called me and told me that there is no need for me to cook all week- that our friends are going to take care of it. I'll tell you, it doesn't get better than that. Thank you all so much.
I will keep everyone updated on the blog here. If you have any questions, feel free to email me or call. I might not feel like talking, but I will do my best to make sure everyone who cares to be is informed of what is happening.
Tuesday, September 18, 2007
And So It Goes
"It is the lingering in the painful past and indecision that Will kill us, the goddamned lingering. And what I think is that we should all keep walking, and stay connected and just keep moving."
from The Elegant Gathering of White Snows by Kris Radish
And so it goes. Moving on from the complaining. Moving on from the on going round of plasma exchange. Moving towards healthy living, and hopefully happy children.
Sunday I got up with the kids even though my wonderful husband said that he would. LOL He just doesn't hear them in the morning. I wish I could sleep like that, but I suppose that sleeping on a carrier with just a few feet of steel between you and the jets landing will teach you to sleep through anything. I completely didn't mind. They really are the light in our lives. There have been days when I just didn't want to keep fighting this disease. Not like I have an alternative in mind, but there are moments of hopelessness when you haven't been able to get control over something like this. So I didn't mind getting up with the kiddos because I haven't been able to spend much time with them what with the trips back and forth to Boston and then the rest days in between. Plus, lets face it, the first shift in the AM is a pretty cushy one.... all you have to do is get their milk, fill up bowls with dry cereal and (here is the best part) snuggle up with them on the couch to watch Curious George and Clifford the Big Red Dog. (Two of my personal favorites, by the way). It is just about the only time during the day that Katherine will snuggle up with you- Thomas will snuggle anytime, as long as there is no baseball paraphernalia laying around.
So there the three of us were, all snugly and happy, and all I was thinking was how sad I was that we hadn't been together like this in almost 2 weeks- and it was all my fault. The guilt I feel is one of the hardest things to deal with. It didn't help that my head was pounding from the cyclosporin, and I was feeling sick to my stomach. After about an hour and a half, I knew I needed to go back to bed. Jason was shocked when I woke him up that I had been up with the kids- he felt really bad- even though there was no reason to. It was my choice to get up. Regardless, I crawled into bed and he went down to be with them. Well, sleep was impossible because of my headache. So I just sat here quietly with my head propped up on pillows. And I listened. I could cry happy tears right now, just thinking about the wonderful sounds I got to hear while I was laying in bed.
J and the kids went out into the garage- undoubtedly pulled by the new Ms. Pac-Man arcade game that must have been screaming to them, "Play Me, Play Me". The garage is directly below our master bedroom- and the machine is practically under my head while I am laying on the bed. So on goes the game and the unmistakable sound effects, mingled with my children's laughter and my husband singing at the top of his lungs a whole smattering of 80's tunes. It was like some kind of twilight zone when I closed my eyes. Somehow I was myself, now, in the old roller rink in Montvale somewhere around 1985. It was a wonderful feeling- even with my head throbbing away. I got up to take a shower, hoping that it would somehow help my head and stomach. After losing my breakfast to the toilet bowl gods, I got in that wonderful hot water and stayed there for what felt like the entire day. I washed away my tears and decided right then and there that I have had ENOUGH. We have had ENOUGH. My family, my children, my friends, we have all had ENOUGH!
from The Elegant Gathering of White Snows by Kris Radish
And so it goes. Moving on from the complaining. Moving on from the on going round of plasma exchange. Moving towards healthy living, and hopefully happy children.
Sunday I got up with the kids even though my wonderful husband said that he would. LOL He just doesn't hear them in the morning. I wish I could sleep like that, but I suppose that sleeping on a carrier with just a few feet of steel between you and the jets landing will teach you to sleep through anything. I completely didn't mind. They really are the light in our lives. There have been days when I just didn't want to keep fighting this disease. Not like I have an alternative in mind, but there are moments of hopelessness when you haven't been able to get control over something like this. So I didn't mind getting up with the kiddos because I haven't been able to spend much time with them what with the trips back and forth to Boston and then the rest days in between. Plus, lets face it, the first shift in the AM is a pretty cushy one.... all you have to do is get their milk, fill up bowls with dry cereal and (here is the best part) snuggle up with them on the couch to watch Curious George and Clifford the Big Red Dog. (Two of my personal favorites, by the way). It is just about the only time during the day that Katherine will snuggle up with you- Thomas will snuggle anytime, as long as there is no baseball paraphernalia laying around.
So there the three of us were, all snugly and happy, and all I was thinking was how sad I was that we hadn't been together like this in almost 2 weeks- and it was all my fault. The guilt I feel is one of the hardest things to deal with. It didn't help that my head was pounding from the cyclosporin, and I was feeling sick to my stomach. After about an hour and a half, I knew I needed to go back to bed. Jason was shocked when I woke him up that I had been up with the kids- he felt really bad- even though there was no reason to. It was my choice to get up. Regardless, I crawled into bed and he went down to be with them. Well, sleep was impossible because of my headache. So I just sat here quietly with my head propped up on pillows. And I listened. I could cry happy tears right now, just thinking about the wonderful sounds I got to hear while I was laying in bed.
J and the kids went out into the garage- undoubtedly pulled by the new Ms. Pac-Man arcade game that must have been screaming to them, "Play Me, Play Me". The garage is directly below our master bedroom- and the machine is practically under my head while I am laying on the bed. So on goes the game and the unmistakable sound effects, mingled with my children's laughter and my husband singing at the top of his lungs a whole smattering of 80's tunes. It was like some kind of twilight zone when I closed my eyes. Somehow I was myself, now, in the old roller rink in Montvale somewhere around 1985. It was a wonderful feeling- even with my head throbbing away. I got up to take a shower, hoping that it would somehow help my head and stomach. After losing my breakfast to the toilet bowl gods, I got in that wonderful hot water and stayed there for what felt like the entire day. I washed away my tears and decided right then and there that I have had ENOUGH. We have had ENOUGH. My family, my children, my friends, we have all had ENOUGH!
I read through some of my more recent blog entries, and I can see how negative they have gotten. Certainly I had a bad summer because of my health, but we were still able to do a lot of fun things. (I suppose if we didn't camp out so much I might have avoided the Lyme disease, but still. LOL) We spent a lot of time together as a family, both nuclear and extended. My wonderful cousins came up to see us from Long Island, Katherine learned to swim, Thomas moved into a big boy bed, Jason finally switched out of the scheduling office and has had perma-grin ever since, and I had some times there when I was feeling pretty good. I even took the kids to the Beach, to Water Country, to Vermont to visit my whole other family (that is another story for those of you who don't know), and we made countless trips to J's parents pool. The best news of the summer, of the year, probably of the decade, is that my folks are moving to Wolfeboro- which is just over an hour from here. Huge improvement over the 6++ hour drive from PA. So when you get down to it, things are really pretty great. As Jason has said numerous times, "All we need now is for you to stop trying to die on us!". Believe me everyone, I am working really hard on that :)
The Nitty-Gritty
I suppose that is enough of the philosophy of Claire for the day...
It has come to my attention that quite a few people are asking themselves, and Jason, and me, what happened that caused yet another exacerbation. First of all, the antibodies and the mechanism that produces them are just there- there isn't much I can do to control that. The meds help to keep the disease at bay, but they aren't a cure. It is the best thing for me to avoid getting stressed, sick or tired. All of which is pretty much a joke for us humans, especially when you have kids and you take immunosuppressants. Ahhh, the dilemmas we face :) It is kind of like taking a disease where you can't speak and naming it Myasthenia Gravis. Do you have any idea how difficult that is to say when your tongue isn't moving? (How many of you are trying that right now? Tough isn't it? heehee)
So the crux of what happened this summer:
End of April- finished plasma exchanges (6) That usually holds me for about a month to six weeks.
End of May/Beginning of June- Started having symptoms again. Combined with a breast infection and the breast lumps that turned out after weeks of worrying to be abscesses. I was put on antibiotics for the infection. MG symptoms went away. Had my blood draw, and Cyclosporin level was in the 400s (excellent numbers) Other than the pain in my breasts, I felt good.
End of June- ended antibiotics. started having symptoms again. Continued to get worse and worse- and there was pain in all my joints, turned out to be Lyme Disease. Went on antibiotics. MG symptoms went away again. Reacted to the antibiotic-switched to another and finished the course. MG symptoms came back
August- MG is back full force, and i keep thinking there is some other infection. Nothing works. Finally call Boston and start this course of pheresis.
Anyone see the pattern? When I was on antibiotics, I was basically fine. Ahha- turns out cyclosporin is a wonderful drug that interacts with just about everything, from other drugs to the food you eat. And, get this, antibiotics help with the absorption of the cyclosporin making a lower dose do the job of a much higher dose. That, my friends is why we have increased the cyclosporin level to 200 mg twice a day. The key is to get the right amount of meds with the least amount of side effects. (Electrolysis anyone? And don't be surprised if you see me wearing gloves when it is 65 degrees outside!) We had to do the pheresis because I was headed towards being tubed because of the trouble breathing and difficulty swallowing. Please say a prayer of thanks that the plasma exchanges work so well, and that they continue to do so. These treatments should hold me until the higher dose kicks in, and if that doesn't kick in as quickly as we would like, we can keep doing the exchanges, as long as they work and my arms hold out.
So that is it for now. I think I am getting close to having a whole book written here. Love to you all. Keep smiling and enjoy the leaves changing.
The Nitty-Gritty
I suppose that is enough of the philosophy of Claire for the day...
It has come to my attention that quite a few people are asking themselves, and Jason, and me, what happened that caused yet another exacerbation. First of all, the antibodies and the mechanism that produces them are just there- there isn't much I can do to control that. The meds help to keep the disease at bay, but they aren't a cure. It is the best thing for me to avoid getting stressed, sick or tired. All of which is pretty much a joke for us humans, especially when you have kids and you take immunosuppressants. Ahhh, the dilemmas we face :) It is kind of like taking a disease where you can't speak and naming it Myasthenia Gravis. Do you have any idea how difficult that is to say when your tongue isn't moving? (How many of you are trying that right now? Tough isn't it? heehee)
So the crux of what happened this summer:
End of April- finished plasma exchanges (6) That usually holds me for about a month to six weeks.
End of May/Beginning of June- Started having symptoms again. Combined with a breast infection and the breast lumps that turned out after weeks of worrying to be abscesses. I was put on antibiotics for the infection. MG symptoms went away. Had my blood draw, and Cyclosporin level was in the 400s (excellent numbers) Other than the pain in my breasts, I felt good.
End of June- ended antibiotics. started having symptoms again. Continued to get worse and worse- and there was pain in all my joints, turned out to be Lyme Disease. Went on antibiotics. MG symptoms went away again. Reacted to the antibiotic-switched to another and finished the course. MG symptoms came back
August- MG is back full force, and i keep thinking there is some other infection. Nothing works. Finally call Boston and start this course of pheresis.
Anyone see the pattern? When I was on antibiotics, I was basically fine. Ahha- turns out cyclosporin is a wonderful drug that interacts with just about everything, from other drugs to the food you eat. And, get this, antibiotics help with the absorption of the cyclosporin making a lower dose do the job of a much higher dose. That, my friends is why we have increased the cyclosporin level to 200 mg twice a day. The key is to get the right amount of meds with the least amount of side effects. (Electrolysis anyone? And don't be surprised if you see me wearing gloves when it is 65 degrees outside!) We had to do the pheresis because I was headed towards being tubed because of the trouble breathing and difficulty swallowing. Please say a prayer of thanks that the plasma exchanges work so well, and that they continue to do so. These treatments should hold me until the higher dose kicks in, and if that doesn't kick in as quickly as we would like, we can keep doing the exchanges, as long as they work and my arms hold out.
So that is it for now. I think I am getting close to having a whole book written here. Love to you all. Keep smiling and enjoy the leaves changing.
Sunday, September 16, 2007
On Hold
I have just read over my last entry. Kind of intense. Oh well. Living like this with all the ups and downs gets pretty intense at times.
I am feeling a lot better. I have just completed the last of 5 plasma exchanges, and I should be 100%, but that isn't the case. Dr. Gorson and I are disappointed that the treatments didn't have the magical effect they usually do. We are going to give it a few days to see how I do. If I still am having a tough time next week, we will do more exchanges. Right now, we need to give my arms a break. My red blood cell count is also really low, and I am severely anemic, so we need to give my body a chance to regenerate, and let the iron pills do their work.
So for now, I am just laying low and hanging out with the kids. I have started the new dose of cyclosporin, and other than being nauseous and having a constant headache, the side effects aren't bothering me too much. I am hoping that this feeling like I am hungover all the time will improve as my body adjusts to the higher dose. Gorson really thinks this is going to work- and if not, we still have cytoxan as an option. Keep your fingers crossed!
I am feeling a lot better. I have just completed the last of 5 plasma exchanges, and I should be 100%, but that isn't the case. Dr. Gorson and I are disappointed that the treatments didn't have the magical effect they usually do. We are going to give it a few days to see how I do. If I still am having a tough time next week, we will do more exchanges. Right now, we need to give my arms a break. My red blood cell count is also really low, and I am severely anemic, so we need to give my body a chance to regenerate, and let the iron pills do their work.
So for now, I am just laying low and hanging out with the kids. I have started the new dose of cyclosporin, and other than being nauseous and having a constant headache, the side effects aren't bothering me too much. I am hoping that this feeling like I am hungover all the time will improve as my body adjusts to the higher dose. Gorson really thinks this is going to work- and if not, we still have cytoxan as an option. Keep your fingers crossed!
Monday, September 10, 2007
Here We Go Again
Well, did I not just say last week that we have been waiting for the bottom to fall out? I have been back down to Boston again- twice last week and once this week, with at least 2 more treatments to go.
It is time for me to stop kidding myself into thinking I can lead this normal life- I will be fine, as usual, but I need to face the fact that even when I feel good, I am not normal. Not like I want to be. Hey, I don't want to be a downer- It is just time to be a realist. The key here is to be a realist and somehow continue to be an optimist. I can do that. Heck. I am superwoman after all.
So apparently it is time for me to stop going to picnics when I am exhausted- let Jase take the kids and come home to a rested and healthier me. Let's face it folks, I can cover all this with jokes and meds and wine- all will give me some temporary relief- but they are just masking the fact that I will keep getting worse if I don't just STOP.
So the new plan (same as the old plan, really) is to get me back under control with Plasma exchanges, increase my cyclosporin level and continue to rest in the middle of the day. I am also supposed to never get sick. So I guess it is time to sell the kids to the gypsies. Although the heartbreak would probably be enough to land me 6 feet under.
I saw Dr. Gorson today, and the blood draws came back with everything looking good, except that my cyclosporin level was too low- which I am taking as a big positive. To be brief, that means that there isn't enough medicine in my system to keep me from going into crisis. I am overall feeling better, antibody by antibody! It will take some time for the meds to kick in, but the plasma exchanges should carry me through this rough spot.
As always, thanks for keeping up with what is going on with me, and we welcome your continued thoughts and prayers- put one in there that I will somehow after 12 and a half years learn to slow down!!!!
Addendum
I was just upstairs putting the kiddos to bed. Thomas was screaming his head off wanting me to snuggle him to sleep and Katherine was asking me to finish reading her book and say prayers with her. All the while, I am thinking about Jason being worn out from all the pressures of taking the kids for the day, working, doing the finances and worrying about his wife. I am also worried about my whole family and the strain this has put on all of them.
And then I started to get angry.
I just need to put this out there: THIS IS NOT MY FAULT. I didn't do anything to ask for this disease- and even if I am going to picnics or changing diapers or going up and down stairs or reading instead of sleeping (by the way, I am not always TIRED- just fatigued), this can still happen. Certainly, I need to slow down once it starts. I make jokes about being superwoman, but I really do try very hard to take it easy when I am feeling weak. The thing is, it is just about impossible to slow down when you have a 4 and a 2 year old. I just try to save up my energy to make it to some of the things that are important to me and to my children and husband.
I love my family more than anything in the world. I hate this disease more than anything in the world.
Posted by claire at 7:37 PM 0 comments
Labels: entry #2 tonight
It is time for me to stop kidding myself into thinking I can lead this normal life- I will be fine, as usual, but I need to face the fact that even when I feel good, I am not normal. Not like I want to be. Hey, I don't want to be a downer- It is just time to be a realist. The key here is to be a realist and somehow continue to be an optimist. I can do that. Heck. I am superwoman after all.
So apparently it is time for me to stop going to picnics when I am exhausted- let Jase take the kids and come home to a rested and healthier me. Let's face it folks, I can cover all this with jokes and meds and wine- all will give me some temporary relief- but they are just masking the fact that I will keep getting worse if I don't just STOP.
So the new plan (same as the old plan, really) is to get me back under control with Plasma exchanges, increase my cyclosporin level and continue to rest in the middle of the day. I am also supposed to never get sick. So I guess it is time to sell the kids to the gypsies. Although the heartbreak would probably be enough to land me 6 feet under.
I saw Dr. Gorson today, and the blood draws came back with everything looking good, except that my cyclosporin level was too low- which I am taking as a big positive. To be brief, that means that there isn't enough medicine in my system to keep me from going into crisis. I am overall feeling better, antibody by antibody! It will take some time for the meds to kick in, but the plasma exchanges should carry me through this rough spot.
As always, thanks for keeping up with what is going on with me, and we welcome your continued thoughts and prayers- put one in there that I will somehow after 12 and a half years learn to slow down!!!!
Addendum
I was just upstairs putting the kiddos to bed. Thomas was screaming his head off wanting me to snuggle him to sleep and Katherine was asking me to finish reading her book and say prayers with her. All the while, I am thinking about Jason being worn out from all the pressures of taking the kids for the day, working, doing the finances and worrying about his wife. I am also worried about my whole family and the strain this has put on all of them.
And then I started to get angry.
I just need to put this out there: THIS IS NOT MY FAULT. I didn't do anything to ask for this disease- and even if I am going to picnics or changing diapers or going up and down stairs or reading instead of sleeping (by the way, I am not always TIRED- just fatigued), this can still happen. Certainly, I need to slow down once it starts. I make jokes about being superwoman, but I really do try very hard to take it easy when I am feeling weak. The thing is, it is just about impossible to slow down when you have a 4 and a 2 year old. I just try to save up my energy to make it to some of the things that are important to me and to my children and husband.
I love my family more than anything in the world. I hate this disease more than anything in the world.
Posted by claire at 7:37 PM 0 comments
Labels: entry #2 tonight
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