Jen's Blog

I had an appointment with my family doctor this week. I found out that a thyroid check is included in my blood work and that my blood work was normal the last two times I had it done. My crazy mood swings went away, so I am no longer concerned. I feel far more confident with my decision to continue staying on the disease modifying drug. I think I am going to stick with the idea that as long as it is not doing any harm I will continue using it. I am trying to incorporate some changes into my diet and plan to try to get more exercise.

Speaking of exercise, last Friday I had one of the best workouts I have had in years. At our music school, my husband Jeff, also has a recording studio and has quite a few recording projects on the go. One of the bands, Sam Coffey and the Iron Lungs http://radio3.cbc.ca/#/bands/Sam-Coffey-and-the-Iron-Lungs, had their CD release party and Jeff and I went to it. Their shows are known for being wild and crazy. When I was younger and before I had kids I would go to shows to see bands up to five times a week. Normally when things get rough at the front of the stage where I always try to be, I move back for fear of getting hurt. At this show I stayed at the front and found out what I was missing! I also used to be very self-conscious and didn’t quite know how to move to the live music. This time I ignored any inhibitions and joined the moshing. I actually looked up the word “mosh” in the dictionary to make sure my description is accurate. “Dance violently” isn’t quite right, but I did “dance to rock music in a frenzied way” and also did “dance to rock music with movement and energy”. I also fell on the stage and the floor, but didn’t care. When I fell on the floor I had a moment where my legs wouldn’t co-operate and had trouble getting up and that freaked me out a little. I’m hoping it’s because my legs were tired from dancing and I’m really out of shape. Jeff suggested it might have more to do with the adhesive properties of the floor. So I decided that I will just have to see bands three times a week to get my exercise. Of course this is not realistic, but I do plan to both get in shape and attend many more shows. I’ve got tickets for two more this month.

At last week’s show I was thinking that I was either going to feel very old, or very young. Going to it reminded me that age really is just a state of mind. This quote kind of sums it up:

“We don't stop playing because we grow old; we grow old because we stop playing.” –George Bernard Shaw

Jen

I’ve been dealing with some odd mood swings lately that come with strong, unexplained emotions. I will be sitting watching a comedy and suddenly feel like crying or feel anxious like something bad is about to happen. My heart will feel like it’s racing and then I start to worry that maybe something is wrong with me. There is nothing going on in my life causing emotional upheaval. It reminds me a bit of how I felt when I had a very brief episode of postpartum depression after having my daughter. My husband was not home and I called him and said he had to come home. He asked me what was wrong and I said that I didn’t know, but couldn’t stop crying and needed him at home. At the moment these emotions are manageable, but I want to address the problem before it becomes a big issue. I have made a doctor’s appointment to ask if this issue could be a) hormonal b) MS related c) a thyroid problem d) a side effect of medication or e) both c and d.
 

I am also going to ask for details of past blood work and whether it shows possible liver damage. I have been concerned with reports of others having to stop medication because it was affecting their liver. I have to keep in mind that many of these same people are also claiming that the disease modifying drugs didn’t help them, poisoned their body, did more harm than good and CCSVI testing and treatment is the best/only treatment to consider. There are also many others who did not do well on some DMDs, but found others that did work well for them. It was comforting to read about others who have been on the same one I have been taking for 10 years or more without ill-effects. Almost all of the people posting their experiences and opinions on this topic encourage everyone to do their own research and make their own decisions. I see looking into potential harm as an extension of doing your own research. New information comes out all the time and so far none of it has changed my mind. However, I am finding the side effects of my injections to be more intense these days and that is also probably part of why I am once again making sure the benefits outweigh the potential risks and side effects. It’s nice to know other people are having the same battle of constantly re-evaluating their decision with regard to treatment.
 

I really sometimes feel like ignoring the fact that I have MS or pretending I don’t have it. I haven’t had an MRI since September 2007. Maybe it’s gone. I have to keep dreaming too…
 

“Excellence can be obtained if you:
 

...care more than others think is wise;
 

...risk more than others think is safe;
 

...dream more than others think is practical;
 

...expect more than others think is possible.”
 

Jen

I was looking at newspaper clippings from our previous fundraising concert events and MS Walk team. I felt pride, gratefulness, hope and disbelief. Proud of my husband Jeff and I for making these concerts happen, raising both funds and awareness. I am proud of our students, their friends and families and our own friends and family for participating in, attending and supporting the events. I’m also grateful for those people who worked hard to help us run the events and/or offered their support.

One article featured me and was titled “Putting a new face on MS”. Others had titles like “Where there’s rock, there’s hope” and “Rocking for MS”. So there is hope that research funded by our fundraising can and will find a cure for MS. It was written that Jeff and I are “Both now committed to raising as much awareness and funds as they can, leading to this year’s concert being a more ambitious affair”. That’s where the feeling of disbelief comes in. I look at these articles and pictures and think wow, we did that? Last year we had 2 fundraising concerts creating 12 hours or more of work on the event days themselves. Of course we could have never done it without all of the help we had lugging and setting up equipment, watching the door, selling raffle tickets, pizza and cleaning up. I never imagined I would be organizing fundraisers, being interviewed or even writing this blog for that matter!

Another part of me felt disappointed and sad. While working on writing a letter to the MS Society I did some more research into the financial records of the MS Society. I am very disappointed with the information I came across. However, I want to give the MSS a chance to respond to my letter before sharing these finding with you. Who knows maybe I totally misread the data. I have to allow them to be “presumed innocent until proven guilty”. I am convinced of my decision to not participate in the walk this year now though. I still feel a little torn only because I enjoyed the community feel of the walk. I always meet new people living with MS and like the feeling of unity—fighting to end MS together. I felt like I could make a difference, but if what I read is factual, these efforts did not make a big difference. It’s saddens me to think the funds raised didn’t go to good use to really help people or to further quality research. I could be wrong about that though.

I have been inviting other MS Villagers to share with me which organizations or groups have provided the most support and help. I have put this request out in the Forum area under “People with MS” under the topic “Support”. Please be as specific as possible. I know I have received emotional support for my local MS chapter and my online community of friends. I haven’t required any other support so far, so I have no idea what organizations are helpful saying. I look forward to hearing from all of you.

Jen

Starting a new year with new and improved habits is a nice idea, but as I have said before, I seem to have trouble following though with plans. I do want to pick up a book that has been recommended to me called The 7 Habits of Highly Effective People. I have been trying to not to procrastinate and do things ahead of time, rather than leaving them to the last minute. I have to admit doing this makes life much easier and less stressful for everyone involved.

I kind of got a taste of my own medicine this week. My son was supposed to go skating with his class and was told the day before he needs a mouth guard, pads etc. to play hockey. I made sure he had skates and a helmet ready for skating, but did not have the required hockey gear. I went on about how the school can’t request these items the day before and my son insisted he would not be permitted to go without them. The school also planned a pizza day with pizza that might arrive before the students are back from skating. It made me wonder how many times I have made unreasonable last minute requests or planned something poorly because I didn’t plan or think ahead.

I was exercising more with Wii Fit over the holidays, but haven’t had time or energy since. The music school has been super busy which is a good thing, but I’ve been waking up feeling sore and tired most mornings despite a good night’s sleep. I have just started taking my Vitamin D EVERY day. I also took a “holiday” break from my injections mostly because I just didn’t feel like doing it Christmas Eve and didn’t resume them until after New Years day. My energy might get better now that I’m back on both my regular treatment and life schedule.

I originally thought we might take some day trips over the holiday or at least go skating or swimming. Our family really enjoyed and needed to just stay home and relax. One day I suggested to my son that he might want to get dressed. He asked if we were going anywhere today. When I said “no” he responded that he was just going to stay in his pajamas then. Of course this conversation was had while I was still wearing my pajamas! It was a much needed week of quality family time and rest. Now I’m trying to readjust to the regular craziness of my wonderful life.

Jen

I had an appointment with my neurologist last week and got a renewal for my disease modifying drug. This of course brings back the dilemma of deciding whether staying on it is the best decision. I recently asked my husband why he would recommend I continue to take it and his answer summed it up—he reminded me I had said if I had many relapses and/or the disease started to progress more quickly, I would always wonder if the outcome would have been different with taking the DMD. More importantly I might regret that I hadn’t tried to modify the course of the disease. These are the main reasons I decided to go on the drug in the first place, but I can’t seem to stop questioning my decision.

I question whether this decision was and continues to be made out of fear. When I think back to when I was first diagnosed, I remember thinking if there was anything I could do to delay disease progression, I had to do it. The data to support the drug’s ability to slow progression is not yet there. The fact that is there, it does reduce the number of relapses and this is a definite benefit, but this is only the case for about 30% of people. I, of course, want to believe I am one of those 30% receiving the benefits of the drug. I also believe in the power of a placebo effect and I don’t care if it’s not really helping me, because I believe it is and that makes me feel better.

I don’t like the fact that even if I feel well, I always have to remember I have MS and plan around my injection nights. I do still have to deal with the side effects which are easily managed and fairly mild most of the time. So far the data shows the drug is safe to take and the risk of serious side effects is low. I do sometimes worry about possible serious side effects, especially when I am always forgetting to get my blood work done regularly.

My decision is based on my understanding of the information I’ve read. What if I’ve misunderstood and the risks are higher or the efficacy is lower? How do I know if I am putting myself at risk in the future with complications not yet known? I’m thinking of sugar substitutes, herbicides and many other products once thought to be safe and only found to be unsafe 15 years or more later.

After explaining my decision process, hopes and fears, I still remain uncertain. I am thankful I have choices and I get to make them. Sometimes I wish someone else could make this decision for me, sorting out the benefits and risks and somehow make me feel entirely confident in the decision.

"Nothing is more difficult, and therefore more precious, than to be able to decide." Napoleon Bonaparte

Jen

There have been many news reports on CCSVI this week in regard to denial or lack of aftercare for those returning from having angioplasty in other countries. I know some of the reports are meant to be a warning, which is warranted. I think this is especially true when aftercare instructions are given in a country where there may be a language barrier. What I do not understand is how any doctor in Canada can turn away a patient in medical distress just because they had a procedure done outside of Canada. Appropriate treatment for a blood clot should be given to every Canadian, regardless of its cause. I’ve heard of Canadians travelling to the United States for other procedures, rather than waiting to have it here. Does this mean they would be refused medical care because they had treatment outside of Canada? These recent concerns should at least prompt Canadian officials to ensure adequate and appropriate medical care for all Canadians in Canada.

I have included the letter I have been promising to share in this blog entry.  I want to point out the fact that the author, Elysha, came to her own conclusions and opinions on this topic. She did her own research and considered various arguments both for and against supporting CCSVI treatment. 

I find it interesting that someone who does not have MS came to these conclusions after doing a lot of research. I have wondered if a letter like Elysha’s, written by someone who does not have MS, might have more impact. For those of us living with MS, it can be difficult to separate emotions when writing a letter asking for what might be our only hope. I am thankfully not in that category at this time, but I certainly fear a future that doesn’t include any hopeful new treatment options or research projects. 

I’m not sure who Elysha decided to send this letter to, but I do know it was to be sent to someone in our Canadian government:

I am writing on behalf of the 75,000 Canadians across our nation currently suffering from multiple sclerosis.



Over the past year, as you are well aware, there has been quite the media frenzy over a new treatment for MS which is being developed by an Italian doctor whose theory is that blocked jugular and azygos veins are related to high iron deposits in the brain, and therefore chronic brain inflammation and multiple sclerosis.



The Ontario government has not approved clinical testing for this theory, as it has been in Saskatchewan and Newfoundland. Testing and trials are the first step toward bringing treatment for CCSVI in support of MS to Canadian patients who are suffering from this cruel degenerative disease. The Ontario government should approve funding for this groundbreaking research.



It is imperative that more vascular experts and interventional radiologists be given more influence over research in clinical research of the present and future, as this debate directly concerns their area of expertise. To overcome discriminatory bias in practice by neurologists who do not specialize in the field of blood circulation and venous networks would be a giant leap toward discovering the scientific proof behind Dr. Paulo Zamboni’s theory.



We appreciate that, in the case of experimental surgery, it is necessary to have concrete evidence to support a theory before opening up the option for treatment to a new category of patients or to the public.



The treatment being questioned is balloon angioplasty. Balloon angioplasty on its own is by no means a revolutionary or experimental procedure. To deny a person access to it based solely on the fact that they suffer from a certain condition is unfair. It is only because it has been hypothesized that CCSVI is linked to MS that those suffering from both conditions cannot be treated for stenosis of the veins. The fact that I, as being unaffected by MS, am allowed open access to the procedure of balloon angioplasty while someone formally diagnosed as having multiple sclerosis on those grounds alone sounds absurd and unfair.



Presently, pharmaceutical drugs used in the treatment of MS have not been proven to “cure” the disorder, but to manage symptoms, sometimes with dire side effects. Is CCSVI not just another symptom or associated condition to MS? If drugs are available to reduce fatigue, to facilitate rehabilitation, to decrease chills and fevering or to manage any other side effect of the disease or the treatment itself, why not move to classify chronic cerebrospinal venous insufficiency as yet another symptom of MS?



I strongly believe that your government needs to take a more prominent leadership role in CCSVI research. Even if the connection is disproven, denying hope to those whose bodies and livelihood are affected by each passing day, through denying research and trials, stands against everything that I value about being a Canadian.



Let there be hope!

Being a procrastinator and having a bad memory are a bad combination. I have always been a procrastinator and it’s a very difficult thing to change. My son has also picked up on this habit, so this is the time to put the effort in to change.

I will put something off, leaving it to the last minute, and then ultimately forget to do it all together. It doesn’t seem to matter what it is. I enjoy writing this blog, which I am supposed to submit every Wednesday. So here I am finishing it on Thursday.

This habit also makes me late for many things because if something comes up unexpectedly like it did this week, it’s impossible to complete the required task on time. I have a very busy life and try to plan ahead, but I even procrastinate with planning ahead. Or maybe I just forget to plan ahead after procrastinating for so long. 

This habit also results in having my husband, who is far busier than me, take on more than his share. It has gotten to the point that he doesn’t depend on me to do things like pay bills. In the past I have always blamed this issue on my memory issues, but the root of this problem is my procrastination.

Last night I actually didn’t do my injection because I put it off until I decided that it was too late. The old me would have claimed that I just forgot until it was too late.  I could also say that I just didn’t want to do it, which is true, but it is also an excuse to continue to procrastinate. It has to stop! 

I had been planning to share the letter that my friend Elysha wrote about CCSVI.  I will share this in next week’s blog entry. I’m not procrastinating this time though!

"Procrastination is one of the most common and deadliest of diseases and its toll on success and happiness is heavy." 
Wayne Gretzky

While searching for the quote above, there was one read that read: "Procrastination is reading all the quotes on this page when you have a huge report due tomorrow."
R. T. A. Birektt

Jen

Last week I met with one of our students, Elysha, to discuss the CCSVI issue.  She had a school project requiring a written analysis of a "contemporary development issue related to the policies and/or practices of the Canadian government (or international development organization or private business or a civil society organization)", as well as to send a formal letter to said organization. In doing her research prior to our meeting, Elysha commented on having no trouble finding information and opinions on CCSVI and its related treatment. She was required to reference academic and “reliable news” sources. I was once again met with the frustration of having many “reliable news” sources reporting inaccurate information.

I think Elysha referred to the CCSVI controversy as being a “big mess”. I am always afraid of misquoting someone because I often remember things incorrectly, so I apologize in advance if I have done that. We ultimately decided (if I recall correctly) there were two ways to approach the issue regarding the Canadian government’s policies and practices. One way is to require the government to allow MS patients access to the angioplasty that other Canadian citizens have access to. This approach assumes CCSVI is a recognized condition and that angioplasty is recognized at the standard treatment for this condition. I have not been able to confirm this though. Many have claimed this procedure can and will be performed on patients who do not have MS. We have heard stories of people being denied the treatment when it is discovered that they have MS. I have not heard stories of people without MS having this condition and treatment. Since CCSVI has been connected with MS, all literature that refers to CCSVI only talks about its connection with MS patients. So the obvious second way to approach this issue would be to have CCSVI recognized as a condition and have angioplasty recognized as the effective treatment. 

It shouldn’t matter whether a person has MS or not. If a person has blocked, narrowed or malformed veins that prevent blood from draining properly from their brain, the condition should be treated. I wonder if part of the problem is a lack of specialists, like interventional radiologists and vascular surgeons, in Canada.  That is a whole other issue, one of many issues that the Canadian government hasn’t done such a great job addressing. And so the battle continues...

“Trails of troubles, roads of battles, paths of victory, we shall walk.” –Bob Dylan

I think my blogs have been getting too long because I also wrote this last week, but it did not get included in the entry. So I included it this week: with all that has been going on I am so relieved that I have been relatively symptom free, at least physically. I don’t know how I would cope if I had more to deal with. I am amazed at how much a holiday can help. We are already planning a little getaway for the December break. I think our family needs more breaks.

Thankfully things have slowed down a bit and my son seems to be getting used to the school routine and expectations. I found more time to practice piano again and actually remember the pieces I was working on and can still play them well.  I was starting to worry more about my memory because I was struggling with pieces I had been practicing for weeks. I was finding that even though I had played them many times, I couldn’t remember them and felt like I was starting over each time I sat down to play. I think my memory might be improving. My family might disagree. It might be more that we have all adapted to my memory issues and I have found ways to cope with the problem, learning new “tricks” to help me remember things.

My son often says he has a bad memory, like me, and that’s why he often forgets things. When I forget things he says it’s not my fault and that it’s just my MS. I try to correct him because I don’t want to blame MS on anything and use it as an excuse. I’ve always been a bit forgetful and have used my forgetfulness as an excuse before being diagnosed. I think he often uses forgetfulness as an excuse for not doing something he doesn’t want to do, like school work. At the same time I don’t want to ignore or be insensitive to his concerns. He has commented on funny feelings, like pins and needles, in parts of his body, but this occurred from the way he was sitting. I think he is more aware of these kinds of things because he has heard me talk about various symptoms before. I worry he is watching for symptoms because he wonders or worries about having MS someday. I am very open and honest with my children and sometimes I wonder if I should keep more to myself because I don’t want them to worry. I have always been a worrier, even though I know there is no point to worrying about things you cannot change. I guess it’s inevitable that my children will pick up some of my habits and traits. It is difficult to be positive ALL of the time and they see my reactions and behaviour every day, which includes both the good and bad times. It’s hard to remember they are watching and listening to how I act and react. Hopefully they will pick up on my optimism and “always look on the bright side of life”.
“If life seems jolly rotten, there’s something you’ve forgotten, and that’s to laugh and smile and dance and sing…and always look on the bright side of life.” -Eric Idle/Monty Python

We have had a very busy couple of weeks here at the music school. It’s been so busy that we need to hire more teachers. My son started grade six after being home schooled since grade one. My Mother-in-law and her husband were in a serious motor cycle accident in Minnesota. They are home now and will be okay after lots of healing. We leave for our holiday this Friday, so I have also been busy trying to leave everything clean and organized both at the school and home.  Despite the busy schedule and stress I have been feeling really well, even though I have also been fighting a cold. I haven’t had the greatest eating habits lately, but have been keeping up with getting more exercise.

I continue to have a hard time getting going on the mornings where I have had an injection the night before. It doesn’t seem to matter how early or late I do the injection, but getting a good night sleep does help. I just feel extra tired and groggy the next morning and incredibly hot, regardless of taking ibuprofen. Even if it’s cool outside, I have the windows open, and am dressed lightly, I continue to feel very hot and sweat like crazy. This is odd and annoying, but I can certainly live with it, especially if the medication is helping me, which it appears to be. I have a hard time with the idea that it’s impossible to know whether it is helping or not. I might feel the same way without it and have no side effects to deal with, but without it I could also be dealing with relapses. I guess its part of the nature of the disease, being so unpredictable and no way of knowing how it will progress. 

I am still undecided whether I am going to do my injections while we are on holidays. I’m going to take it with me, but might not use it consistently.  I really don’t like the idea of feeling so hot and sweaty when it will already be very hot in Florida. I’m worried that being out in the heat more than I’m used to combined with these side effects, it might be too much. I also tend to be rather grumpy (to put it politely) when I am too hot. I’ve thought about changing my injection days slightly so that more of them fall on days when we are driving there and back, but with no air conditioning in our van and a passenger power window that sometimes doesn’t open or close, I’m not so sure this idea will help. I’m sure I will figure it out and everything will be fine, but I tend to be a worrier. It’s not a huge deal, or at least it shouldn’t be, especially considering that I am going on a holiday. I’ll let you know how everything went when I get back.  

Thanks for reading,

Jen

I am really angry and disappointed with the Canadian government with the recent announcement that there will not be any clinical trials for CCSVI treatment for at least two years, and there may not be any at all. The claim is that there isn’t enough evidence to support a clinical trial. According to our health minister, “based on the current evidence, we cannot further risk the health of MS patients on a trial”. How can we gather evidence to prove or disprove this treatment without the clinical trials the government requires to make it available? How could testing this treatment risk the health of MS patients more than drug trials? 

Who are these people on this board that made these recommendations? Why are no interventional radiologists or vascular surgeons being consulted? It doesn’t take a scientist or researcher to realize research for a vascular condition should involve some experts in that field. Dr. Alain Beaudet, president of the Canadian Institutes of Health Research said that doing the procedure on veins is risky. How much expertise does he have in this area? He just happens to have built most of his career at the Montreal Neurological Institute. I think it’s fair to say people who earn their salaries working in the field of neurology have a vested interest. I don’t know who the other professionals on this board making this devastating recommendation are. According to the CIHR website, “each of the CIHR's 13 institutes has an advisory board”. I’m guessing  the Institute of Neurosciences, Mental Health and Addiction board members were involved and no one asked the Institute of Circulatory and Respiratory Health members. 

Why can someone without MS have this treatment in Canada and I can’t? I feel as though Canadians with MS are being discriminated against. I have been skeptical of this treatment from the start, but wanted to see clinical trial results. I think the anecdotal evidence is too strong in volume to ignore. Even if this treatment is effective for 33% of those who get it, this matches the efficacy of some drug therapies that are offered and subsidized by provincial drug programs. How can they deny patients this option when there are no other treatments available for people with secondary or primary progressive MS?  Sorry this blog is turning into a rant, but I can’t help it. 

On a positive note, Liberal Leader, Michael Ignatieff said, “the federal government should fund research to sponsor the kinds of clinical trials that are necessary to figure out whether this treatment is a benefit to Canadian patients, yes or no”. I voted for the party in power and I think it’s time to write to Mr. Harper and make my disappointment known and demand action. I hope you will consider joining me.  
Thanks,

Jen
 

I have been going crazy this week trying to find my birth certificate. I need it so I can get a passport for our trip in September. I found my husband’s and had the kids certificates in a safe place. I don’t know why mine wasn’t with theirs? I thought I had it safe in an old wallet I took on a trip two years ago, but it wasn’t there. I have torn the house apart trying to find it. I have found lots of other interesting things I had forgotten about. I keep thinking if I were more organized I would have an easier time remembering things, but it doesn’t seem to help. I think I am going to start a daily journal. Even if I just make notes of mundane, simple things like where I put something important away, it will be helpful.

Right now my poor husband is the one who has the job of trying to help me remember things, which isn’t really fair. When he reminds me of something I need to do, I usually make up an excuse for not doing it because I don’t want to admit I have forgotten. I will have to apply for a new birth certificate and note in my journal where I put it away so I won’t have this problem again. Most people have a safe place (or two) where they keep important things. I have at least a dozen “safe places”. I found my husband’s birth certificate in a shoebox of old keepsakes. I’m not sure why I put it there. I think many things got put away in strange places after the flood/broken pipe incident last summer. But, perhaps that’s just another excuse! 

I am also debating trying to keep a camera with me all of the time. I used to enjoy painting and drawing, but haven’t made time for it in a long time. I often see things that inspire me to want to paint them, but can’t remember the details later.  I can still remember the creepiest, but at the same time, most beautiful sunset I saw about a year ago. I am surprised I can remember it so clearly.  While searching for my birth certificate I came across cards and art work that my children had created, including some with their hand and footprints. I can remember when and where some of it was created, especially the day I let the kids “go wild” with paint outside, becoming covered with paint from head to toe.  So why can’t I remember where I put my birth certificate? Maybe I can remember things I have an emotional response or connection to. If only my feeling of frustration could help me remember things! Oh well, I have to let it go and move on. I have to focus more on finding solutions, rather than letting the frustration take over.

“I’m gonna bury my frustrations, grab some of life’s satisfactions. So close your eyes, and embrace your memories. Leave your troubles and worries far behind.  Stop contemplating and start celebrating.  Yeah you gotta live before you die” 
– Lyrics by Mike Ness (Social Distortion)
 

There has been more heat and humidity this week and the kids and I have been finding ways to stay cool. I tried to take them swimming yesterday and was planning to sit in the shade and watch them in the community pool. We found out my daughter has to have someone 13 years or older to accompany her in the pool to pass a swim test. I would have gladly gone swimming, but didn’t have my bathing suit, because the plan was for my husband to go swimming with them. I kind of planned that for him, thinking it would be nice for him to have some time with the kids. He has been working so hard lately, having many late nights recording bands; he just needs a quiet break. So my daughter decided to try the swim test even though she doesn’t really know how to swim. It was hard to not laugh as I watched her. She kind of ran in the pool while trying to make it look like she was swimming. Now I have another goal for the summer: teach her to swim! I can’t believe the summer is almost half over already. In some ways I’m glad it’s going fast. We have our Disney trip in September to look forward to. I have been finding the heat is bothering me more. It feels like I have a fever all of the time, even though I don’t. The heat might be part of the cause of the fatigue I’ve had, but I actually feel energized after spending time outside. This might have more to do with being more active and enjoying time with my kids. I like the summer pace and will be a bit sad when the kids go back to school. My son has been home schooled since grade one and is going to school for grade six in September. This will bring big changes for our family. 

Things in the “MS world” really seem to be changing these days. I used to have people asking me about MS and sharing stories of those they know with MS. I now have people asking about my thoughts on CCSVI or telling me about their friends or family members who are traveling to have the Liberation procedure. The Premier of Saskatchewan has announced plans to fund clinical trials of the Liberation treatment. Even though I am not a believer of the conspiracy theories involving pharmaceutical companies, I have to admit they have made me question the efficacy and safety of my disease-modifying drug. I do plan to continue to stay on the drug therapy, as long as I continue to feel that it’s working and not doing any harm. Michelle’s (fellow blogger) comment, “even if you think your MS isn’t bad, it will be one day and by getting this treatment, you can prevent permanent damage from happening to you,” has also given me a new perspective. The idea of having the treatment to possibly prevent damage makes sense. Hopefully clinical trials for the treatment will be offered throughout Canada soon. Unfortunately, there are many Canadians living with MS who don’t have the luxury to wait and I have a feeling we will be waiting for a long time in Ontario. 

Thanks for reading,

Jen
 

I went strawberry picking with my son earlier in the week and I can’t believe how sore my legs are. It was one of the hottest days and thankfully the heat didn’t really bother me.  I know I am out of shape, but I wasn’t expecting I would feel it this much. I was taking cookie sheets of strawberries down the stairs to our freezer and groaning the whole way.  My son said maybe my legs were sore from MS and not from picking strawberries. I told him it had nothing to do with MS and I should exercise more regularly. I have come to realize I have been using MS as an excuse to be inactive. I always talk about doing all I can do now in case I am unable to in the future; but I haven’t been practicing what I preach. Yes, I might get tired and need extra rest, but this is not a reason to avoid exercise altogether. I’m guessing having stronger muscles and less fat will help with my stamina and energy levels as well. My husband says I am the “Queen of Excuses” and I have to admit (but not to him!) that it’s true. I’ve decided I’m going to try and get exercise from activities I enjoy, like picking strawberries, so I am less likely to come up with excuses. I have started with the Wii Resort Sports games and wasn’t expecting to get much exercise from it—but my arms are sore today from virtual canoeing, wakeboarding and frisbee. I’m hoping to pick raspberries next week, so we’ll see how my legs feel after that.

I think I have been spending too much time reading about CCSVI online and became a bit obsessed with it. Many people who have had the Liberation treatment have talked about having sore body parts, not from MS, but from being more active and not having enough muscle strength yet. This reminded me once again how lucky I am to not have any physical challenges at this time, beyond being my usual clumsy self. My balance and co-ordination is not great, but it never has been good, and I’m not sure if it has been worse with MS or not. I figure the more fit I am, the less likely MS will win. My husband said I should be careful not to allow physical discomfort to become a disability. This idea obviously wouldn’t apply to everyone with MS, but it’s very appropriate for me. I have a tendency to use my condition as an excuse to do nothing, thinking that resting will help me feel better. This is not the case and thinking this way is not doing me any favours, just giving me more excuses. Even when my legs were sore after picking strawberries, I felt re-energized and motivated to do more, as long as it didn’t involve using my legs too much! I have these great ideas, try them for a week and then forget about them. I could blame my lack of motivation on forgetfulness, but that’s just another excuse…

See you next time,

Jen

I planned a surprise 40th Birthday party for my husband, Jeff and now that it’s over I can write about it. He’s not easy to surprise, especially with how often we are together both at work and at home. I invited friends, family, former students and musicians he has played and recorded with. I also had five bands play at the party last Saturday. Everyone (including me), couldn’t believe I managed to pull it off and surprise him. I was so worried I had said something to give it away. I often say things and have no recollection of saying them. I was also concerned about forgetting to invite someone important or forgetting to organize something that was essential for the bands to have. A friend helped load in and set up the music/sound equipment. I was determined to help, even though I was wearing a new pair of high heel shoes. The heels on these are higher than what I would normally consider, but I figure I had better wear them now in case I can’t wear them someday. By the time I took Jeff home, brought the equipment back to the school and unloaded it and took a friend home it was about 4:00 am! My daughter also had three dance recital performances over the weekend. So I’ve continued to be very tired. Now, I have to clean the house to have family over for Father’s Day. 

My blood work came back without any concerns. I don’t think I’m following my neurologist’s advice to pace myself. I guess I shouldn’t be overly concerned with the fatigue and forgetfulness with all I have had to do and remember. If I had tried this before I started treatment I would have spent a day or two in bed afterwards. I’d like to believe I’ve been able to accomplish more only because of my medication, but I think my stubbornness and determination have played a big role too. I have a fear of not getting something done (like cleaning) and discovering the next day that I am physically unable of doing it. My determination to live life to its fullest helps to calm this fear and reminds me of what’s truly important.

“Twenty years from now, you will be more disappointed by the things that you didn't do, than by the ones you did do. So throw off the bowlines. Sail away from the safe harbour. Catch the trade winds in your sails. Explore. Dream. Discover.”

Mark Twain
 

I went for my latest follow-up appointment with my neurologist yesterday. She said that nothing has changed and my EDSS has remained the same—this was great news for me! I sometimes think and worry about how many years I have left before the disease progresses and I accumulate disability. Having 3 years of no disease progress is very promising. It gives me hope that my disease modifying drug therapy is working and doing what it is supposed to. It is impossible to know whether it is in fact delaying the progression of the disease because there is no way to predict how the disease will progress for each individual. It’s also comforting to know if I develop a tolerance to it and it stops working, there are other options. My neurologist mentioned that there will be a new oral therapy coming out by the time I see her again in 6 months. I will stick with my current treatment until/unless it stops working. I am really comfortable with it because there is more than 10 years worth of data proving its effectiveness and safety. 

I asked about iron deposits and found out they do not show up in a regular MRI and other things can cause them; so having iron deposits doesn’t prove CCSVI is present. I also asked my neurologist about medication to help with fatigue. There are not any that are very effective and her advice was to pace myself. This advice was also given knowing I would rather not take medication unless it is highly effective and has little or no side effects. I forgot to ask my other questions even though I wrote them down, probably because I was happy to hear I am doing so well. I have been feeling well other than being tired. I think the headaches have more to do with the weather, allergies and hormones than MS. 

As I write this blog I am now remembering I need to get my blood work done. I keep putting it off because I keep forgetting and I don’t like having blood drawn.  It’s hard to draw blood because they say I have narrow veins. When I had a medication given intravenously when having dental surgery the doctor said the same thing. When we first heard about CCSVI, both my husband and I wondered if having narrow veins might mean there was a good possibility I might also have CCSVI. It will be very interesting to see if there is a connection between blood circulation (or lack of) and MS. 

Thanks for reading,

Jen

I’ve been thinking about how I would view things if I didn’t know I have MS; particularly cognitive issues. I was talking with a friend recently who insists my memory problems probably have more to do with getting older and having a busy life, rather than because of MS. I feel better knowing other people don’t remember movies they have seen or books they have read. It doesn’t explain why I can’t remember to put food back in the fridge or remember a location I’ve been to dozens of times. Perhaps my memory isn’t as bad as I think it is and I use MS as an excuse for not remembering. But, I do find I have to practice piano pieces over and over again, and sometimes when I go back to play them I feel like I’ve never even played them before. I read the music and I don’t try to memorize the songs, but after practicing them a lot, they should seem more familiar, right?

 My husband and children certainly notice my bad memory, but they notice it more because they live with me. Sometimes my children don’t think I care because I forget things they’ve told me. Maybe I need to take extra care to listen more attentively. I’ve been really tired lately and should probably try to get more sleep at night. I’m sure fatigue doesn’t help my memory. I’ve had some days lately where I feel totally out of it and everything is “foggy”. I think I’ve heard others call it “brain fog”. I do try to stay positive and not dwell on these things, but if I try to believe my memory issues have little to do with MS will it change anything? By thinking my memory is bad because of MS, am I giving myself a license to be forgetful? I have also found I tend to interrupt people because I am so afraid I will totally forget what I wanted to say. When having conversations with people I often remember what I wanted to add once it is no longer relevant.  I somehow don’t think this is “normal”, but as I have said before, being normal is overrated. I guess all I can do is try to be as healthy as possible with eating and exercising both my body and my brain and hope for the best. There are many things I haven’t tried yet that could help. I just need to make a list of these things so that I don’t forget to try them!

Jen

This week we booked a family vacation to Disney for September. I haven’t traveled outside of Canada with my MS medication before. We will likely be driving so I will be asking fellow MS Villagers for advice. There is one perk of having medication that requires refrigeration. We can get a fridge in our room free of charge! A facebook villager once shared that when he goes on a holiday, he takes a holiday from his medication as well. I like this idea except for the concern of a re-adjustment period of going back on treatment afterwards. I missed a week’s worth of doses once last September and found the side effects more severe, like they were when I first started the medication. I’m not sure if things would be different because I’ve been on it consistently for almost 2 years? It’s probably one of those unpredictable things that are different for each person. I am also concerned about whether going off for a week would also cause a relapse. I will have to ask my neurologist if this idea is a good one or not. 

I will have a follow-up appointment with my neurologist later this month. There probably won’t be any changes to report, which is a good thing. I’ve had terrible bouts of random itchiness for no apparent reason. It feels like bugs are crawling under my skin and there is no rash. I have read this may be “paroxysmal itching” that may be related to having MS. Beyond this new possible symptom and the headaches I seem to continue to get, there is nothing else I want to discuss. I suppose I should also mention my (and my husband’s) concern with memory issues. I think right now this problem, possibly caused by MS, is what scares me most. I am having a really hard time remembering anything. Last week I was supposed to drive my son to a location to meet for a hike with his Cub group. I thought I knew where it was, but was mistaken. I have driven to this location before and could not remember where it was. He missed the hike and I was so frustrated with myself for not being able to remember. It feels like I forget many important, simple things every day. Maybe it’s not that bad and I’m just being too hard on myself. I have had a lot of things to remember over the last month or so. I will keep you posted in regards to what my neurologist says about these concerns. Thanks for reading. 

Jen
 

This week went by so fast I almost forgot about Friday’s statutory holiday. I feel like I needed Friday to be a regular day so I could get more work done. Our first MS fundraising concert is coming up on Sunday April 11 and I’m running out of time. The second concert is on April 23 and the MS Walk is April 18. I think I thrive under pressure and accomplish more when things are busy. It’s also less stressful when the extra work revolves around things I enjoy. I guess I should enjoy the long weekend because I won’t have time to relax in the weeks to come. I use to refer to the rollercoaster ride of life—these days I feel more like I’m driving a race car. My energy levels seem to match as well. I have bursts of vigour and feel great until I crash and get tired. I have to remember to pace myself and rest when I need to.

I continue to have many people asking me to share my thoughts on CCSVI and have heard from others who seem to think a cure for MS has been found. Unfortunately I don’t think correcting the problems of blocked or narrowed veins will be a cure. I recently read a commentary, expressing frustration with having CCSVI testing and the Liberation Treatment available in other countries, but not in Canada. My opinion and experience seems to be quite different. I have been very satisfied with the medical care I have received for both myself and my family. I appreciate the extra research and caution the government takes with approving new medications and treatments. When I consider the fact that the CCSVI theory itself is reportedly not new at all, and remember how many Canadians live with MS, I can understand the frustration with how slowly things are moving. This new research could lead to new information about MS. Anything new that can alleviate or reduce the symptoms of MS, or delay the progression of the disease is very exciting. Just knowing the search for the cause(s) of MS continues is reassuring. I am also thankful there are so many of you out there staying involved and determined to continue the fight to end MS. I really do believe a cure for MS will be found in my lifetime.

Thanks,

Jen
 

I’ve been feeling extra tired lately, but not today. Hopefully this is the end of a couple of bad weeks. They haven’t been bad in any other ways. I’ve just been feeling like I can’t get enough sleep or rest. At first I thought if I got more active I would end up having more energy. I tried using my Wii Fit and ended up feeling so sore and tired for days afterwards. I know I’m out of shape, but the way I felt physically afterwards did not match the amount of exercise I got. I like the activities on the Wii because it feels like I am playing games rather than exercising. The games also challenge me in areas where I struggle, including balance and coordination. I know yoga is more strenuous than it feels and is more challenging than many expect, but I still can’t believe how 30 minutes of activity wore me out so much.

This fatigue is especially difficult for my husband, Jeff, to understand. He thinks I am being lazy, which I have to admit is true some of the time. He has some lazy, downtime, but a lot less of it. The business requires a lot of his time, energy and expertise and he does work hard. I never want Jeff to be viewed as “the bad guy” because he has never been that guy and never will be. I couldn’t ask for a more supportive, loving, involved partner. He also knows me better than anyone else and therefore also knows when I am using excuses for not doing the things I should (I just deleted a sentence full of excuses). I am lazy with housework and tend to let too much slide. As a result I often end up with a really big mess. This disorganization causes chaos and stress for me and my family. Then the fatigue sets in, making it very difficult to ever catch up. I need to learn to clean a little bit at a time on a regular basis.

When I explain this struggle to friends and family I have some that respond with encouraging tips with how they stay on top of housework. I have others that tell me I need extra rest because I have MS, which only fuels my avoidance of housework. It’s nice that they care and are trying to be sympathetic to my struggle, but my struggle with MS has very little to do with my distaste for housework! Jeff calls it the “adhesive quality of my butt”. Perhaps sharing this struggle with you will help encourage me to stick with my plan to change. Another MS support site has a forum area that asks people to post their exercise and weight goals with the idea of having others hold them accountable. This goal setting idea is another way we can support each other. Maybe someone will start this topic thread on the MS Village Forum?

Thanks,

Jen

I wasn’t holding high hopes for the CCSVI study results, but I am disappointed with the results. I guess in the back of my mind, I was really hoping this discovery might really lead to another new effective treatment or even a cure (it still might). The evening before the initial trial results were released, the news included a brief report with the announcement that McMaster University in Hamilton, Ontario will be conducting CCSVI trials. The original broadcast also featured a young man with MS and showed him struggling to walk, and when he spoke his speech appeared to be greatly affected. His difficultly with walking didn’t bother me at all, but listening to him speak actually scared me. It started to make me wonder if my optimism is also a form of denial or a coping device. It’s not that I didn’t know MS could affect speech; I just hadn’t thought much about what it would mean to me if I had that big of a challenge with speaking. I also think I believe that more severe symptoms won’t affect me and I’ll always be okay. According to the MS Society of Canada, “about 50% of people with RRMS will develop SPMS within 10 years of diagnosis. There is not yet reliable long term data available on the impact of disease modifying therapy and conversion to SPMS.” I sure hope I end up being proof that disease modifying therapy changes this statistic. It’s just another reminder of how important it is to live each day to its fullest, because you never know what tomorrow might bring.

I’m glad the reporting of the results has been optimistic, but also realistic. I’m also happy the research will continue. I was surprised that in the trial, only the people with MS had the MRI done. I am curious to know if the 22.4% of the healthy control group, whose ultrasound showed CCSVI, would have iron deposits or lesions. I wonder if any of these individuals might develop MS in the future, despite being healthy during the trial. I don’t think I’m going to even try to be involved in any of the trials. I’ve read there have been more than 22,000 people asking to be a part of the Hamilton trials. It’s great so many are pushing to have this research done and I look forward to the unfolding results.
 

Last week I had an opportunity to do some public speaking. I haven’t done this since I was in grade school, but the topic I spoke on made the experience less nerve wracking. I rediscovered that I am good at speaking to an audience. I talked about my journey, so far, in living with MS and also talked about my involvement with MS Village Canada. After my prepared speech, when individuals in the audience asked spontaneous questions, I had a difficult time answering them. The questions were not difficult to answer, I just didn’t have enough time to think about how to answer them. I am finding that I seem to trip over my words more often and sometimes say a totally different word than the one I meant to use. Other times, a word will come out and be complete gibberish. The more disturbing part is the fact that I don’t even realize I’ve used the wrong word. I’m not sure if this is MS-related, or if I have always done this. Maybe I just drink too much caffeine to combat fatigue!

I started to try and answer one of the questions and suddenly couldn’t even remember what was asked. Afterwards, my husband said he wanted to jump up on stage and whisper ideas into my ear. I was asked to describe some of the relationships I’ve formed with people on MS Village. I have only corresponded with people online and have never met any of them in person, and yet I feel like I know them. I think this is because people feel comfortable sharing personal details of their lives using the forum and discussion area. Our opinions and feelings are not censored here. Even though MS affects people in many different ways, we can all find things in common, and not everything we “chat” about has to do with having MS specifically. More importantly, we all have something to offer each other. We take the time to try to answer someone’s question, lift their spirits, or acknowledge their challenges and feelings. In some ways we are sharing with strangers, but in other ways, we have developed relationships through our efforts to support each other. When I say “we”, I’m talking about all of you who participate using the MS Village site and related social media (Facebook, Twitter, YouTube). I really do feel like I am part of a community with MS Village.

I’m not sure if I’ve answered the original question accurately. It’s difficult to describe the valuable connections I’ve made through MS Village. For those who haven’t checked out the forum or Facebook page, please try it out. The benefits of the relationships I’ve developed here have been endless and I would love to “chat” with more of you. I should end this entry because this is starting to sound like an advertisement. The content of my blog is not edited, only the spelling and grammar. As always, thank you for reading my blog and stay tuned for more.

Cheers,

Jen

It’s been hard getting back to the normal routine after the holidays. I had a nice, relaxing break. I slept so much I started to wonder if I was part bear. I don’t make New Year’s resolutions, but I do have a list of things that I’d like to change or improve. The New Year could provide the perfect opportunity to try and get a “fresh start” for some of these things. I think the trick for me is to focus on a few at a time rather than all of them at once.
 

I’d like to improve my diet and encourage the rest of my family to do the same. I am ultimately responsible for what my children eat. I have to plan ahead to ensure healthy eating habits for them. This is easier to provide for my daughter because she goes to school. My son is home schooled, which has meant he has taken on some of my bad eating habits—not eating at regular enough intervals and not always eating a balanced diet. It can be difficult to provide healthy dinners because we are at our music school in the afternoons and evenings. But, if I plan ahead I can cook healthy meals at home each day.

The situation with my husband’s health is a challenge. He does the grocery shopping and buys healthy foods, but has terrible eating habits—in my opinion. He often eats what he calls “brupper” which is one meal for breakfast, lunch and supper! I have recently suggested it doesn’t make sense for me to continue my MS treatment which improves my health, if he isn’t going to take care of himself. I am not planning to stop my treatment, but I think I make a valid point. It does take effort and patience to do my injections, but I am committed to do what I can to delay the progression of MS to live a long, productive, high quality life. I obviously want to live this life with my husband, but I worry the long term quality will not be the same if he continues on the path he is currently on. I guess I will stick to my plan to prepare and offer the healthiest meals and snacks I can and hope he follows suit!

While writing this blog entry I am realizing I should focus on one goal at a time. This first one seems to be enough for now. The goal also requires some organization which leads to an overall goal to become more organized. If guilt could motivate me I could accomplish so much more. But, the fact it doesn’t motivate me, means it no longer consumes me, helping me stay positive and happy.
 

This is supposed to be a time of year where people should feel happy, but I’ve been feeling a bit down and frustrated. Many people are stressed preparing for the holidays. I don’t get stressed though, I just do my best. I really enjoy getting out the decorations, putting up the tree, buying gifts and baking; but I haven’t started any of it yet. I’m sure this is part of why I’m feeling down, but there is more to it.

My son helped package Christmas hampers with his Cubs unit at the Salvation Army church. Walking into this room of new donated toys and clothes brought tears to my eyes. I felt sad thinking of those who have so little. My son talked about choosing special gifts for each child and how it made him happy to know these children were getting gifts. I’m thankful I have never been in need before, although we’ve been close. Growing a business is a long journey that requires a lot of time and patience before financial rewards are reaped. Thankfully I have received many other rewards that mean far more to me—especially supportive and understanding family and friends.

I’ve been wondering why it’s so hard for people to accept help. My mom broke her arm last week; I offered to have her come to our home on Christmas Eve, but she declined. I’ve realized even when I really need help, I decline offers too. It’s not that I’m afraid to admit I need help, or that I am embarrassed—it’s more a matter of not wanting to accept that I’m not where I expected to be in life. No one dreams of the time when they just couldn’t quite get by without help. I know there is always a light at the end of the tunnel, but sometimes I can’t see it.

“I opened up the fence where the peacocks were, the lamas were unleashed the snakes and seals could all get out, but they refused to leave. All of the animals agreed they're not happy at the zoos, but they preferred to save themselves, they seemed to think they could...” –Christmas at the Zoo, by The Flaming Lips

Everyone, including my husband, seems to be very excited about Dr. Zamboni’s theory and his Liberation Treatment. Our family made a point of watching the W5 program on Saturday evening. This has created some interesting conversations at home. My son left the room, later returning to ask if the “creepy show about MS was over.” I asked him why he thought it was “creepy”. He talked about how he didn’t like to see what could happen to people with MS over time. He said that he hopes that he doesn’t get MS when he grows up. I went into parental protection mode spewing facts about the percentage of those with MS who end up permanently in wheelchairs, the hope that current treatments offer, and of course, the real hope of a cure in my lifetime. These are all of the same things I am always telling myself in order to stay positive. So in some ways it is strange I am becoming more and more skeptical of this so called “amazing breakthrough”.

I am definitely not one to jump on a “band wagon” and have always insisted on doing my own research before forming an opinion. I think that is part of why I am not so sure about this new theory. There simply hasn’t been enough research done to come to any conclusions yet. I usually rely on my husband to sort through and make sense of research data. I’m surprised he seems so convinced, because he is supposed to be the more logical and analytical one who helps me see the bigger picture.

I think I am also afraid to raise false hope. It’s easier to be skeptical when I haven’t been living with this disease for very long, haven’t accumulated any permanent disability and believe my current treatment is working. Due to cognitive issues, or a coping mechanism, I never seem to remember how bad the bad times can be. I can’t believe how such an exciting possibility can stir up this crazy mix of conflicting feelings!

I was reading the Blog description on MSvillagecanada.ca and paid particular attention to the idea of overcoming my MS. I am overcoming MS in some ways and writing about my experiences has been a big part of my success. I know all of my entries don’t have to have a profound message and are meant to give readers a glimpse into my everyday life with MS. I do want my entries to be interesting and hopefully inspiring on occasion. I don’t see my life as being that exciting and sometimes it’s tricky to come up with something to write about, but that leads to the most important purposes of my blog: my hope is to encourage people to see things in a different light, inspire them to make every day count and give them comfort that they’re not alone in this fight against MS.

I have found that reading about other people’s experiences has helped me see things in a different light. I have often read someone’s story and wondered how they got through their challenges, thinking I wouldn’t have been able to! Trying to imagine living their experience is exactly what helps me get through some of my challenges.

In writing this blog I have continually realized the importance of making every day count. I can’t say that I always do it, but there are countless regular, everyday people in this world inspiring me to. Many of these people have shared their experiences on MS Village discussion boards. I really enjoy “chatting” back and forth with other individuals across Canada who are also in various stages in their journey in overcoming MS.

I have become obsessed with finding inspiring quotes to share with my readers, so here is another one for you!

“You can do your best, or you can pretend that life is time to waste.” – Winter’s Over by Change of Heart

I’ve recently noticed my emotional state often matches how I feel physically. So, I’m wondering if I keep my spirits up when I’m feeling lousy physically—will it help my body feel better? I’m generally a positive person, but it’s hard to stay happy when the headache that usually lasts a few days starts. When I got this headache earlier in the week, I tried to take extra care of myself with rest and positive thoughts—my headache went away within 24 hours! I guess I shouldn’t underestimate the power of positive thinking.

I am officially another year older. I am not bothered by it, but I seem to have some moments of sadness as each year passes. I think about how much time has passed and how fast my children are growing up. My biggest worry is that I am going to forget, or have already forgotten important moments and special times I’ve spent with them. I am not afraid of how MS will affect me physically, probably because I haven’t noticed any progression in this area since being diagnosed. Thankfully, any setbacks I’ve had physically have been temporary. However, I do think my memory has been affected and seems to get worse as time passes. I might be exaggerating the memory decline because losing these precious memories is probably one of my worst fears. If I lose some abilities physically over the years, I’ll adapt and work around it, but I want to remember all of the great moments in my life!

I am always surprised by the ups and downs I describe in my journal and blog entries. Even within one entry, I will be happy and positive one moment, and sad and sappy the next. I was reading about someone with MS who was requesting medication to control emotional outbursts. He or she didn’t elaborate in terms of what these eruptions entailed, or whether they were directly related to having MS. At first the idea of having a pill to control this sounded like a good idea. But, after giving it some more thought, I came to the conclusion I like having emotional outbursts. I have no idea what this person was experiencing, but for me, having downs only makes the ups better! I don’t think I would appreciate the good times if I didn’t have any bad times.

“I’m gonna let the bad times roll” – Paul Westerberg
 

The cooler fall weather has arrived along with less sunshine. These conditions seem to bring on more symptoms for me as well. This means it’s time to start taking Vitamin D again. I do seem to feel better and have more energy when I take it, which is sort of strange considering the most severe relapse I’ve ever had occurred in the summer.

Cold and flu season seems to have started early this year and I hate to admit that I have a virus. I have been reading about the flu shot and whether it’s something I should consider getting. I’ve never gotten it in the past and generally don’t get sick very often. When I do, it’s a cold, not the flu. While doing my research I read about how people with MS can have a “pseudo-relapse” as a result of cold and flu symptoms.

Over the last few days I’ve been extra tired which is probably entirely due to fighting this virus, but I’ve noticed a few other symptoms I haven’t had in quite a while. I’ve had some numbness and tingling in my face, a sore back and my leg has felt strange. But, it makes sense now! I did notice these symptoms BEFORE reading about “pseudo-relapses”, so I don’t think it’s psychological. I am always inclined to say something is just “in my head”—but in reality it really is MS.

I have to say, I like being asked about how I am feeling when I know people are referring to my cold/flu, rather than MS. For those of you that know me, please don’t take offence to that comment. For those of you that have MS, you might be able to relate.
 

This week I’ve been thinking about how MS has affected my family. This thought was initially sparked by a recent trip to the zoo. We’ve been going to the zoo since my son was a baby (he’s 10 now!) and I’m familiar with the amount of walking involved, but I got extremely tired this time. I don’t recall feeling that tired from walking before. I wondered if I was just extra tired that day, or perhaps my children are getting older, and as I get older I have a harder time keeping up? But, my 60 year old father-in-law didn’t have any trouble—so I started to think about how my family has had to become more tolerant, while I’ve become less.

I try not to use MS as an excuse for anything, but it’s easy to become absorbed in all of the wacky symptoms and consequences it sometimes brings. It’s difficult to say whether I really do expect my family to be more tolerant of my ups and downs, or whether I just think I’m expecting more because I feel guilty. I feel guilty about not taking care of my family the way I should, snapping at the kids when I don’t feel well, not getting house work done etc. I am stubborn and forgetful which can be a bad combination. I have to learn to back down and consider, I might be remembering something incorrectly before arguing. Recently, my husband has had some health issues that are likely related to diet and stress and I feel partly responsible for that too.

Writing about my life has shed light on a few things. It has shown me that I can be too hard on myself. It’s easy to over think and analyze everything. I’ve noticed that I have more ups and down than I realized. What happened to my positive message last week?

Don’t worry, that passionate, upbeat person is still here! I am truly happy with my life and I accept the challenges as learning experiences. I am thankful for this opportunity and honoured to share my life with all of you! Thanks for listening Villagers.
 

The first week back to school brings more order and more work to my life! Many of our music school students took the summer off and are returning this week, which means I am making lots of phone calls to remind everyone. We are also renovating and I have a lot of cleaning and organizing to do. If only I could get caught up with house work! I find it very difficult to get everything done and I often worry about doing too much. My husband is very supportive, but doesn’t really understand the reality of fatigue caused by MS. However, I have found that I do have more energy since I started treatment.

My daughter started grade two yesterday. I always wonder if she ever mentions that I have MS to friends or teachers at school. She did tell everyone about the MS Walk and our Concert for MS last year. I don’t talk about my MS a lot, but my son does. He often complains that he has a bad memory and likes to use this as an excuse for not completing his school work—I have wondered if this is also a reaction to the problems caused by my memory issues.

I have always been a little forgetful, but my memory seems to be getting worse, so I have started online “brain games”. I read about an 18 week trial where the participants showed improvement in different cognitive areas by playing similar games. I had a difficult time teaching my son some math yesterday. We decided that Dad will teach math from now on because it’s a subject I’ve always struggled with. The work should have been simple, but my brain just couldn’t seem to process the information. I’m not sure if this problem was MS related or not, but all I can do is try to improve. I try to play some “brain games” every day, so we’ll see if it helps.

Thanks for reading. Stay tuned!