Feeling exhausted after working job number 1 until 4:00 yesterday and then on to job number 2 until 2 am. Back up and at 'em this morning. It's a good day in spite of it all. The sun is actually shining today and the kid is happy as the prednisone is doing it's work and his symptoms are subsiding. The numbness is almost gone. His vision is coming back in to focus and he see one of everything rather than 2. Now he continues with his routine of Copaxone injections and vitamins and wait until he gets the green light to start the Tysabri. We are praying it works. Beginning to feel like options are running out.
Hopefully the weather will hold out and we can have a nice weekend here for once. What happened to summer this year?
Friday, July 10, 2009
Monday, July 6, 2009
Exhaustion set in
I've been so exhausted and sick the last while that I haven't had the energy to sit down and write. I have had a raging sinus infection which has affected my sleep. I'm now working 2 jobs and trying to keep my son's head above water. His neurologist has suggested since the lose of his job that he apply for medical EI and take a few weeks to recover before jumping in to job hunting again. The process takes forever so I'm trying to subsidize the income he doesn't have which translates in to supporting him, paying his rent etc. I've also had to spend time talking him down from the tree. They have put him back on steroids which mess with his head big time. He always falls in to a deep depression and the world becomes a place he doesn't want to be. I keep reminding him he has a place to come home to but he's not ready to give up his new found freedom quite yet.
On a more positive note, he is the first person in the province of Alberta to be subsidized for Tysabri. Thank heaven for that option as there is no possible way on God's green earth I could afford that medication.
The province had decided after Tysabri was back on the market that they were not going to subsidize this one. This was due to the cost of the drug and the fact that they didn't feel that it was proven to be any more effective than Rebif, Avonex, or Copaxone. He has an amazing neurologist and she has managed to convince them that in fact, and especially in Dustin's case, it is not only one of his last options but does show promise in cases such as his where the lesions are in the brain. Once he has finished this round of prednisone and done what ever time she deems necessary to do a wash out, he begins the Tysabri.
We do have angels in our lives and we say thanks for those angels every day. Now all we can do is hope and pray this drug works for him.
On a more positive note, he is the first person in the province of Alberta to be subsidized for Tysabri. Thank heaven for that option as there is no possible way on God's green earth I could afford that medication.
The province had decided after Tysabri was back on the market that they were not going to subsidize this one. This was due to the cost of the drug and the fact that they didn't feel that it was proven to be any more effective than Rebif, Avonex, or Copaxone. He has an amazing neurologist and she has managed to convince them that in fact, and especially in Dustin's case, it is not only one of his last options but does show promise in cases such as his where the lesions are in the brain. Once he has finished this round of prednisone and done what ever time she deems necessary to do a wash out, he begins the Tysabri.
We do have angels in our lives and we say thanks for those angels every day. Now all we can do is hope and pray this drug works for him.
Saturday, June 20, 2009
The return of the raging relapse
The relapse has returned. Once again he finishes the prednisone and within a couple of weeks it comes raging back. Now I'm trying to deal with severe depression from afar. All we have is MSN and as soon as I type something he doesn't want to hear, he shuts me down and disappears. It's maddening.....grrr. I just don't always know how to help. Sometimes I think I make it worse but he needs to see the reality and not just the monsters he's created in his mind. He has an MRI tomorrow. I've lost count of how many of those he's had. Then to the neurologist on Tuesday to see what she can come up with next.
Saturday, June 13, 2009
Can life be crazier?
I should have learned my lesson by now about asking if life can get crazier, can get any worse etc. as the powers that be in this universe tend to show me it certainly can. Shit fairies reign supreme in my life.
I now have a second job. That means 8 hours at one and as much time as I can spend with what's left in the day at the other but the money is coming in handy right now. My son is still jobless and in still another relapse as stress really affects his MS. I've not only been busy with 2 jobs but also trying to figure out available resources to help him in his situation. It just seems like a huge circle with one agency referring us to another and to yet another until you end up back where you started. I told him my motto is one minute at a time. It's tough to rationalize when one is in such a mess. He was too young to remember much of the stress that I suffered as a result of his father. 13 years ago my ex decided to tell the world he was gay by molesting a 15 year old and consequently and rightly spending 5 years in prison. Try explaining that to 3 children. It was a nightmare to say the least. I was left to support the 3 of them with no job at the time and only about $30,000 in savings. I was living in a foreign country with no family but thankfully a couple of friends. I thought I was going to be living in poverty and homeless with three children in no time. I quickly found a job making $10 an hour which kept us going but it was by no means easy. In my travels I found something written by another woman who had gone through some serious stress and although it was different, I could relate to what she said. I will have to see if I can find it and post it. She talked about taking each day 1 minute at a time and there were many days I could only manage one minute at a time. I don't remember much of the two or three years that followed. I just went in to survival mode and functioned there as best I could. I did what most women do, we survive when the going gets tough. If I thought beyond one minute, it became too overwhelming. I do remember the phone call. My ex was working back in the States at the time and I was still living in Canada with my kids. I was in the middle of a nap as the kids were at school and we had a busy evening ahead. The phone rang, it was his boss asking me if there was anything he could do. I was clueless as to what he was talking about. After him talking in circles for about 5 minutes and asking me if I had talked to my ex, he spit out that the police had come to work and arrested him on child molestation charges. I was speechless and numb. I didn't know what to say. My ex had not phoned me. He lived in denial for months before his trial. He thought it would all blow over. Denied ever doing it (we learned later in his confession that he was guilty of all) and said he'd be home in a few months. It was a crazy bizarre time in all of our lives and still haunts us. I will tell more of that later. I could write a book on those years and may do that here as things pop in to my head. The point is, I'm trying to get my son to that place of one day at a time. Right now we're just working on finding any kind of financial help we can to get him through this time. Hopefully he'll have better luck at the next job. Every job he has taken, except his first job at 7-11, has let him go because of his illness and the time he spends home sick because of his relapses. I still kudos to 7-11. They stood by him and supported him through every relapse he had while there. He is considering going back there for the time being at least. We need to sort his education and see if we can get him some IT certifications to help him along as well. It's just so tough with an illness that keeps him down so much of the time. He may just have to pack it in and head back here to the US where he has a home with me and no pressure. It's tough to swallow when you're 24 and don't want to live at home with mommy anymore.
Tomorrow is another day.
I now have a second job. That means 8 hours at one and as much time as I can spend with what's left in the day at the other but the money is coming in handy right now. My son is still jobless and in still another relapse as stress really affects his MS. I've not only been busy with 2 jobs but also trying to figure out available resources to help him in his situation. It just seems like a huge circle with one agency referring us to another and to yet another until you end up back where you started. I told him my motto is one minute at a time. It's tough to rationalize when one is in such a mess. He was too young to remember much of the stress that I suffered as a result of his father. 13 years ago my ex decided to tell the world he was gay by molesting a 15 year old and consequently and rightly spending 5 years in prison. Try explaining that to 3 children. It was a nightmare to say the least. I was left to support the 3 of them with no job at the time and only about $30,000 in savings. I was living in a foreign country with no family but thankfully a couple of friends. I thought I was going to be living in poverty and homeless with three children in no time. I quickly found a job making $10 an hour which kept us going but it was by no means easy. In my travels I found something written by another woman who had gone through some serious stress and although it was different, I could relate to what she said. I will have to see if I can find it and post it. She talked about taking each day 1 minute at a time and there were many days I could only manage one minute at a time. I don't remember much of the two or three years that followed. I just went in to survival mode and functioned there as best I could. I did what most women do, we survive when the going gets tough. If I thought beyond one minute, it became too overwhelming. I do remember the phone call. My ex was working back in the States at the time and I was still living in Canada with my kids. I was in the middle of a nap as the kids were at school and we had a busy evening ahead. The phone rang, it was his boss asking me if there was anything he could do. I was clueless as to what he was talking about. After him talking in circles for about 5 minutes and asking me if I had talked to my ex, he spit out that the police had come to work and arrested him on child molestation charges. I was speechless and numb. I didn't know what to say. My ex had not phoned me. He lived in denial for months before his trial. He thought it would all blow over. Denied ever doing it (we learned later in his confession that he was guilty of all) and said he'd be home in a few months. It was a crazy bizarre time in all of our lives and still haunts us. I will tell more of that later. I could write a book on those years and may do that here as things pop in to my head. The point is, I'm trying to get my son to that place of one day at a time. Right now we're just working on finding any kind of financial help we can to get him through this time. Hopefully he'll have better luck at the next job. Every job he has taken, except his first job at 7-11, has let him go because of his illness and the time he spends home sick because of his relapses. I still kudos to 7-11. They stood by him and supported him through every relapse he had while there. He is considering going back there for the time being at least. We need to sort his education and see if we can get him some IT certifications to help him along as well. It's just so tough with an illness that keeps him down so much of the time. He may just have to pack it in and head back here to the US where he has a home with me and no pressure. It's tough to swallow when you're 24 and don't want to live at home with mommy anymore.
Tomorrow is another day.
Thursday, May 28, 2009
A New Day
I've decided it's time to take a trip back to Canada. The company I work for is basically blaming every cutback they make and every employee they want to let go on the economy. Even though I still have my job telecommuting with them, they haven't asked me back in 3 months. I was going back every other month which was draining but advantageous in the fact that I got to spend time with my family. My granddaughter's 7th birthday is the end of June and she is insisting I promised her I would come back. How do you say no and disappoint a 7 year old?
I was thinking this morning of all of the times she and I have spent having girls weekends or evenings out. She's is so precocious. I remember the time she cut her own hair and phoned me crying because she wanted it back and didn't understand why we couldn't just put it back. We both went for haircuts that night having dinner out after. We were walking through the mall when she decided she needed as beautiful new dress to go with her beautiful new haircut. Do you think she got that beautiful new dress? Of course she did! I don't know a grammy who could say no to that cute little face. I'm once again having trouble saying no to that cute little face. I also need to check on my son and see for myself that he is doing OK. Hopefully his job loss won't trigger another MS relapse. It's time we all get some relief from the stress.
I was thinking this morning of all of the times she and I have spent having girls weekends or evenings out. She's is so precocious. I remember the time she cut her own hair and phoned me crying because she wanted it back and didn't understand why we couldn't just put it back. We both went for haircuts that night having dinner out after. We were walking through the mall when she decided she needed as beautiful new dress to go with her beautiful new haircut. Do you think she got that beautiful new dress? Of course she did! I don't know a grammy who could say no to that cute little face. I'm once again having trouble saying no to that cute little face. I also need to check on my son and see for myself that he is doing OK. Hopefully his job loss won't trigger another MS relapse. It's time we all get some relief from the stress.
Wednesday, May 27, 2009
The Hits Keep Coming
My son was just informed that he is laid off from his job at a lovely (not) company in Calgary. We believe it is due to the time he had to take off due to his last two MS relapses. He was sick with the flu on Monday and when he returned to work today, they gave him the news. Sure wish I could prove this one but companies are so good at covering the behinds. The stress was just beginning to lift as he had moved with his friends into his own place and life was beginning anew for him. I know they say things happen for a reason but this one is hard to find the reason for. He finally found a job he really enjoyed doing and was looking forward to a future with them. I guess we have to believe that when one door closes, another opens. It's just all so frustrating for a kid who is trying to get well. This mom wishes he's just move home and take a long rest from it all before trying to begin again but I have to let the birdie fly...I have to let the birdie fly...can you tell I'm trying to convince myself?
Sunday, May 17, 2009
A Quiet Sunday
It's a cloudy, cool day today. Won't be doing much outside. My son will be out of touch for a couple of days as he gets settled in to his new place. He's waiting to get the cable and internet connected. MSN is a main source of contact for us so I feel like my arm has been cut off. Hopefully he'll get connected again soon. His relapse seems to be under control. They steroids have done their work but usually, as soon as they wear off, it's only a couple of weeks before the next attack. His neurologist suggested he take a couple of days off work. She doesn't think it a good idea to keep going as hard as he has been. She feels it is stressful enough trying to move during a relapse but to continue working on top of it is a bit much. He has decided to go against her advice and keep working. We can only suggest, he has to manage. He gets quite cranky when we try to push so I have had to learn to quiet my tongue. It's not always easy for me to do. I tend to have a big mouth and voice my opinion. I try. He seems happier and more relaxed now to be in his own home where he has some control and freedom.
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