Re: My week - the good and the bad

[Guest guest]

..I can't say anything about the meds because I've never been on any of them. But congrats on only one new lesion.

I sure know what it's like to live with the house disarray. The thought of moving all my dishes, crystal, etc. from the dining room and everything from the livingroom depresses me just thinking about it. This little voice in my head keeps saying 'live with the scratches and take the money'. keeps at me to go away for a few days to a casino with a great golf course (no, I'm done with golf) but there is no way I'll go without a kitchen window put in. I'm sick of looking at plywood ... hugs, Cait

My week - the good and the bad

I saw my neuro on Monday, and we [FINALLY] filled out the paperwork for the Tysabri. I've been in touch with them, and my insurance is confirmed that I will have coverage for the whole thing, and that what have you. So I have my first infusion appointment set (a week from Monday). Now that we have confirmation on the insurance covering the Tysabri, I can stop taking my Copaxone to wash out prior to the infusion. Evidently, my neuro's office doesn't have a set protocol for the amount of time you need to be off before Tysabri starts. But now looking around the house, I realize that I have 3 years of sharps containers (granted, one year was only a shot a week) that I need to turn in, and I have almost a full month of Copaxone that has to be turned into a pharmacy to be destroyed. But just not getting the shots anymore will definitely make my life easier. There have been a few nights where I've had trouble getting to sleep because the injection site was tender to the touch. Plus, I'm tired of the bruising. My neuro says that even though my MRI only showed 1 new lesion, I was obviously having new symptoms, so its a matter of treating the patient and not the MRI.So on Tuesday, I had my fall with the dog. My back got so bad through the course of the day and evening that I did end up using my cane - not for my knee which I thought I would need it for, but for support from my back discomfort. I can't help walking into my dining room and the alcove upstairs without despairing. Since hubby's desk is still not completely here, there is still stuff EVERYWHERE. Can't get to my recumbant bike, our old loveseat we had moved into the dining room because we have to wait before we can put it out on the curb, that's completely full of stuff, the dining room table, every bit of space other than the boys' desks are being used. It will be I don't know how many days until the last part of hubby's desk gets here, and hopefully it's not broken when it gets here again. But then again, just adding that part (the hutch) won't take care of all this mess. So hubby is going to have to figure out what to do with this stuff QUICK - I won't let him start back on the living room until this stuff is taken care of, because there is no where to move stuff out of the living room.For the heat, so far this summer we've had 13 days where we've broken records, and I've heard tonight that some of those records were for the highest low temp of the day - like today. I've been staying out of the den alot, because with so many windows it gets really warm - warmer than the living room and dining room anyway, so the house isn't cooling it enough - the thermostat is in the dining room which is right by the chimney, so it stays cool on that side of the dining room (plus the dining room has no windows). And my fan is now out of the den, because I have no where to sit it now. But since I've been out of the den mostly, I haven't had any heat related problems since I'm not going out.My oldest is in band camp this week and next. From Monday until today, he had dinner breaks where he had to come home for dinner. Since hubby was picking him up (I don't drive) I've had to cook all week, except for Tuesday, when hubby picked up Mickey D's since I was hurting so bad. For tomorrow and Mon - Wednesday, they are feeding them dinner at band camp, so I told hubby that he better believe he's doing make up cooking! But next Thursday it's a home dinner break again, so I know that's one night where I HAVE to cook. It's not just the cooking that bothers me, but having to find convenient quick things that I can have ready by 10 after 5. I mean, really, who wants to start cooking dinner before 4:30? But that's what I did today because we had tacos, and I chopped up the vegetables before I put the meat on.The good thing is hubby bought a ton of fruit - most of it for the oldest for his snacks at band camp, but of course we are eating it too. Now if I can get him buy that much fruit every week we'd be set.Tina

[Guest guest]

..I can't say anything about the meds because I've never been on any of them. But congrats on only one new lesion.

I sure know what it's like to live with the house disarray. The thought of moving all my dishes, crystal, etc. from the dining room and everything from the livingroom depresses me just thinking about it. This little voice in my head keeps saying 'live with the scratches and take the money'. keeps at me to go away for a few days to a casino with a great golf course (no, I'm done with golf) but there is no way I'll go without a kitchen window put in. I'm sick of looking at plywood ... hugs, Cait

My week - the good and the bad

I saw my neuro on Monday, and we [FINALLY] filled out the paperwork for the Tysabri. I've been in touch with them, and my insurance is confirmed that I will have coverage for the whole thing, and that what have you. So I have my first infusion appointment set (a week from Monday). Now that we have confirmation on the insurance covering the Tysabri, I can stop taking my Copaxone to wash out prior to the infusion. Evidently, my neuro's office doesn't have a set protocol for the amount of time you need to be off before Tysabri starts. But now looking around the house, I realize that I have 3 years of sharps containers (granted, one year was only a shot a week) that I need to turn in, and I have almost a full month of Copaxone that has to be turned into a pharmacy to be destroyed. But just not getting the shots anymore will definitely make my life easier. There have been a few nights where I've had trouble getting to sleep because the injection site was tender to the touch. Plus, I'm tired of the bruising. My neuro says that even though my MRI only showed 1 new lesion, I was obviously having new symptoms, so its a matter of treating the patient and not the MRI.So on Tuesday, I had my fall with the dog. My back got so bad through the course of the day and evening that I did end up using my cane - not for my knee which I thought I would need it for, but for support from my back discomfort. I can't help walking into my dining room and the alcove upstairs without despairing. Since hubby's desk is still not completely here, there is still stuff EVERYWHERE. Can't get to my recumbant bike, our old loveseat we had moved into the dining room because we have to wait before we can put it out on the curb, that's completely full of stuff, the dining room table, every bit of space other than the boys' desks are being used. It will be I don't know how many days until the last part of hubby's desk gets here, and hopefully it's not broken when it gets here again. But then again, just adding that part (the hutch) won't take care of all this mess. So hubby is going to have to figure out what to do with this stuff QUICK - I won't let him start back on the living room until this stuff is taken care of, because there is no where to move stuff out of the living room.For the heat, so far this summer we've had 13 days where we've broken records, and I've heard tonight that some of those records were for the highest low temp of the day - like today. I've been staying out of the den alot, because with so many windows it gets really warm - warmer than the living room and dining room anyway, so the house isn't cooling it enough - the thermostat is in the dining room which is right by the chimney, so it stays cool on that side of the dining room (plus the dining room has no windows). And my fan is now out of the den, because I have no where to sit it now. But since I've been out of the den mostly, I haven't had any heat related problems since I'm not going out.My oldest is in band camp this week and next. From Monday until today, he had dinner breaks where he had to come home for dinner. Since hubby was picking him up (I don't drive) I've had to cook all week, except for Tuesday, when hubby picked up Mickey D's since I was hurting so bad. For tomorrow and Mon - Wednesday, they are feeding them dinner at band camp, so I told hubby that he better believe he's doing make up cooking! But next Thursday it's a home dinner break again, so I know that's one night where I HAVE to cook. It's not just the cooking that bothers me, but having to find convenient quick things that I can have ready by 10 after 5. I mean, really, who wants to start cooking dinner before 4:30? But that's what I did today because we had tacos, and I chopped up the vegetables before I put the meat on.The good thing is hubby bought a ton of fruit - most of it for the oldest for his snacks at band camp, but of course we are eating it too. Now if I can get him buy that much fruit every week we'd be set.Tina

[Guest guest]

It is hard when the overnight low doesn't get low--everything stays heated up and there's no chance for that overnight cool-down. When I was living in the Phoenix area I remember times when the low never dipped below 100. Miserable! Are you excited about starting the Tysabri? I hope everything goes well and it helps quickly!hugs SharonThis email is a natural hand made product. The slight variations in spelling and grammar enhance its individual character and beauty and

in no way are to be considered flaws or defects. To: mserslife <mserslife >Sent: Thursday, July 28, 2011 5:41 PMSubject: My week -

the good and the bad

I saw my neuro on Monday, and we [FINALLY] filled out the paperwork for the Tysabri. I've been in touch with them, and my insurance is confirmed that I will have coverage for the whole thing, and that what have you. So I have my first infusion appointment set (a week from Monday). Now that we have confirmation on the insurance covering the Tysabri, I can stop taking my Copaxone to wash out prior to the infusion. Evidently, my neuro's office doesn't have a set protocol for the amount of time you need to be off before Tysabri starts. But now looking around the house, I realize that I have 3 years of sharps containers (granted, one year was only a shot a week) that I need to turn in, and I have almost a full month of Copaxone that has to be turned into a pharmacy to be destroyed. But just not getting the shots anymore will definitely make my life easier. There have been a few nights where I've had trouble getting to

sleep because the injection site was tender to the touch. Plus, I'm tired of the bruising. My neuro says that even though my MRI only showed 1 new lesion, I was obviously having new symptoms, so its a matter of treating the patient and not the MRI.

So on Tuesday, I had my fall with the dog. My back got so bad through the course of the day and evening that I did end up using my cane - not for my knee which I thought I would need it for, but for support from my back discomfort.

I can't help walking into my dining room and the alcove upstairs without despairing. Since hubby's desk is still not completely here, there is still stuff EVERYWHERE. Can't get to my recumbant bike, our old loveseat we had moved into the dining room because we have to wait before we can put it out on the curb, that's completely full of stuff, the dining room table, every bit of space other than the boys' desks are being used. It will be I don't know how many days until the last part of hubby's desk gets here, and hopefully it's not broken when it gets here again. But then again, just adding that part (the hutch) won't take care of all this mess. So hubby is going to have to figure out what to do with this stuff QUICK - I won't let him start back on the living room until this stuff is taken care of, because there is no where to move stuff out of the living room.

For the heat, so far this summer we've had 13 days where we've broken records, and I've heard tonight that some of those records were for the highest low temp of the day - like today. I've been staying out of the den alot, because with so many windows it gets really warm - warmer than the living room and dining room anyway, so the house isn't cooling it enough - the thermostat is in the dining room which is right by the chimney, so it stays cool on that side of the dining room (plus the dining room has no windows). And my fan is now out of the den, because I have no where to sit it now. But since I've been out of the den mostly, I haven't had any heat related problems since I'm not going out.

My oldest is in band camp this week and next. From Monday until today, he had dinner breaks where he had to come home for dinner. Since hubby was picking him up (I don't drive) I've had to cook all week, except for Tuesday, when hubby picked up Mickey D's since I was hurting so bad. For tomorrow and Mon - Wednesday, they are feeding them dinner at band camp, so I told hubby that he better believe he's doing make up cooking! But next Thursday it's a home dinner break again, so I know that's one night where I HAVE to cook. It's not just the cooking that bothers me, but having to find convenient quick things that I can have ready by 10 after 5. I mean, really, who wants to start cooking dinner before 4:30? But that's what I did today because we had tacos, and I chopped up the vegetables before I put the meat on.

The good thing is hubby bought a ton of fruit - most of it for the oldest for his snacks at band camp, but of course we are eating it too. Now if I can get him buy that much fruit every week we'd be set.Tina

[Guest guest]

Yes, I really am excited about starting the Tysabri.  I've read so much that it's twice as effective as the interferon meds and Copaxone, and that's what I need right now, I think.  The good thing is, we've got a " cool front " moving through, and although it's not going to make a big difference, we're going to have a couple days in the lower 90's before we jump back up to 100.

Tina

 

It is hard when the overnight low doesn't get low--everything stays heated up and there's no chance for that overnight cool-down.  When I was living in the Phoenix area I remember times when the low never dipped below 100.  Miserable! 

Are you excited about starting the Tysabri?  I hope everything goes well and it helps quickly!hugs

 SharonThis email is a natural hand made product. The slight variations in spelling and grammar enhance its individual character and beauty and

in no way are to be considered flaws or defects.