It's a New Day

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?

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.

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.

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.

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.

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?

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.

A New Chapter Begins

My son has now moved in to a new apartment he shares with two friends. This is a first for him. He had lived with me until Sept. 2008. He has concerns as to whether he can do this with MS such a huge factor in his life. The concern is mostly due to the fatigue and the fact he hasn't been able to work full time. He has a lot of support and I think he will be do just fine. Stress is a huge trigger for relapses. He's been living with his sister and very controlling brother-in-law for the last 9 months. We're hoping that leaving that stress behind will help calm his disease. He's excited to be on his own and knows he always has a room in my home if he needs. I'm excited for him and hope all goes well but worried at the same time. It is likely just typical mom worry when a birdie decides to fly. Today I have tears of both joy and sadness. Joy that he has taken such a big step. I think it will help his morale but sad for the struggle he faces everyday.

More steroids

We have been facing another relapse. Well, not really another. Dustin's neurologist says it's been one continuous relapse again that they can't get under control. This time it has affected his entire left side. He was trying to avoid the steroids as he has taken so much in the 4 years since his diagnosis that he has no calcium left in teeth but to no avail. He started having problems with his teeth about 2 years in to this and the dentist was shocked when he saw that he really had very little calcium left. I can only imagine what it has done to his bones. When it comes to holding off on the steriods, the vertigo gets the better of him every time. It's tough when he vomits every time he moves his head. I remember the first time he had the vertigo. I received a call at work from his best friend who had been at the house earlier in the day telling me he wasn't doing well. I phoned home to check on him and he didn't answer the phone. I came home to find him on the lying bathroom floor not able to even get up and move to his bed. I managed to get him to the car and to the hospital where he did a three day stint. That was the beginning of the steroid journey.

As his mom, this is so, not about me, it is about him and his illness but there is still so much guilt wondering if I had done something differently while I was pregnant, if we had stayed in California rather than move to Alberta, Canada where the incidence of MS is so extremely high would he be OK and not have to endure this beast of a disease?

He still has not made a decision on switching to Tysabri. He can't get past losing the airmiles he says. My hunch is he has some fear around switching. The thought of a brain infection scares him.

I cry for him almost every day and wish I could take this one away from him. Feeling helpless again......

Tysabri or not to Tysabri

The history goes something like this, my son was diagnosed with MS about 2 weeks after his 22 birthday. That was almost 4 year ago. What a birthday gift eh? While waiting for his subsidy approval from the Ministry of Health in Canada, the relapses were devastating for him. He was bedridden alot of the time.

In Canada, the medication for MS can almost be fully subsidized except Tysabri. They claim they have no proof that is any better than the other 4 they do subsidize. In Alberta, if you meet the below criteria, all you pay is a max of $65 a month plus a copay and that varies by pharmacy which is a dispensing fee that runs about $25 per.

Patient must be assessed by MS neurologist (any
neurologist can become an MS neurologist)

Prescription must be approved by ministry of health review
panel

Patient must have relapsing-remitting MS, at least 2
attacks in previous 2 years and ambulatory with or without
mobility aid

He more than met the criteria but due to circumstances, it took close to a year to get it all in place. While waiting, the MS continued to get worse so the doses of steroids began. He had two rounds of IV prednisone as he was hospitalized two times during that year and one oral dose as we managed to keep him out of the hospital as we were learned to manage this beast. The subsidy finally came through, thank heaven for that as there was no way we could afford the close to $1,300 a month for these meds, and he began the Copaxone. He was on it for less than six months when his former neurologist decided the relapses weren't easing and switched him to Rebif. His system just did not tolerate the Rebif and the injections for him were so painful he wasn't following through so, consequently, he was not getting better. We were getting desperate to find some relief for him as due to the vertigo, he had no quality of life. He couldn't walk a straight line if he had to, the double vision stopped him from driving and he couldn't keep his head up long enough to go anywhere anyway. We used to try to get him to use a cane so he wouldn't fall but he refused to give in to it. I would tell him he was going to get arrested for drunk walking which he found humorous but still refused to use any type of walking aid. It quickly became apparent he wasn't able to stick with the Rebif so the next step was about a years worth of chemo and back on the Copaxone. It seemed a God send as it was a year free of relapse and he had his life back. He could drive again, was not missing work and was able to go out with friends and participate in life.

After six months after finishing his chemo treatments, the relapses or what they now think is one unrelenting relapse, began again. Albeit this time, not as severe although he did miss a week of work due to the vertigo again. His neurologist has now suggested he try Tysabri. Dustin's concern is with the continuous relapse/relapses. He has required way too much prednisone which has been an issue where Tysabri is concerned. He is also concerned as nothing has stopped the relapses and if this does not keep them manageable, what happens when he needs more steroids. His fear is the risk of PML and possible death. I must say I was happy to hear that he had some fear of death as about a month ago, he was feeling hopeless to the point of being suicidal. I sat with him one night in a parking lot, he and I both in tears, with me trying to convince him there is a good purpose to life. Pretty tough as I am not in his shoes and can only imagine his pain and frustration. So not the question is to Tysabri or not to Tysabri.......

The Small Things in Life that make it worth it

Talk about laughing through my tears. My son says the only benefit he gets from MS is the monthly air miles he racks ups as a result of the exhorbitant cost of his copaxone. So far he has turned those air miles collected over the last couple of years in to a nice 40" HD TV. Today he figured out a way to rack up even more every month. He calls it "airmiles inspired living to the max". He says it's the only thing that makes him jab himself with a needle every night......the crazy things in life that keep us going eh? Whatever works as I told him. The MS walk is this Sunday here and I always find it to be such a rough day as I'm forced to face reality in a big way. It will be even tougher this year as I go it alone without my family there with me. Not always sure this move was a good thing even though I'm trying to consider our future and where we can afford to be when all is said and done.

MS strikes again!

Mostly this is about life as a mom who has a son with multiple sclerosis and what that feels like. I remember very clearly the day we were told. My son symptoms presented with his left eye. It had stopped moving. The first thing they did after the initial exam was send him to see a neurologist who scheduled him for an MRI. We were sitting in his office as he went through the results and when he was finished, he asked what we thought when we heard the term multiple sclerosis. It took all I had to keep it together and not break down. For Dustin's sake, I did not want to do that. I was trying my best to be strong and positive. He kept asking what we thought and all could say was, "I need to go home and process this". All Dustin could say was he was glad it wasn't cancer that he could live with a wheelchair at some point but he has since changed his thinking. He had no idea at the time what he was up against. What was going through my mind was a friend who was diagnosed when we were in our late 20's. He was an electrician with his own very busy business. My thoughts went to all of scrambling to help him out as he was quickly admitted to hospital where he was bed ridden and couldn't even feed himself for weeks. Back then they didn't have MRI's and CAT scans so after ruling out other illnesses, the decided he had multiple sclerosis. I have lost touch with them due to all of us moving to different areas but I often wonder how he is doing.