"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.
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