Dexterity Triumph!


Happy Monday! It’s a beautiful, but hot day here in the resort town of Cobourg.  No problem, I have tidying on my list to do today.  I’m afraid that I have gotten sloppy over the week, but I’m on it today!

Here we are at the end of July!  I can hardly believe it.  The years do fly by now. It’s actually August tomorrow–a new page on the calendar and a time for new opportunities. Don’t you always feel good, when there is a new month full of possibilities?

Well, I’m actually blogging about this past weekend’s opportunities. I had the switching up of the pets on Friday. I had my youngest daughter’s cat for a week and a half.  Poor Kanye was sick and Kaitlyn’s condo had no air conditioning. So, I picked him up the day I arrived back from Nova Scotia, but had to return him on Friday as my oldest daughter was coming out with her dog and it was a bit much to have the Dallas the dog, Kanye and my own cat, Jett in the same house at the same time.

Anyway, a friend of Alysse’s was hosting a painting party.  I don’t know how many folks have attended these, but they are fun! To me, a painting party was when you invite a bunch of friends over to help you paint a room in your house, but this actually walks you through creating a painting on canvas! I was excited to attend, but a little nervous, as the MS has left my hands somewhat numb and with some dexterity challenges.

I am happy to say that I actually produced a painting, and you can actually tell what it is a painting of! On top of that, we had a glass of wine, while doing it.  What could be more fun than wine, paint and brushes and a blank canvas?  Our instructor is a friend of my daughter’s and she walked us through producing the painting, step by step.  Everyone creates the same painting, but you can take artistic license and make some changes as you go. I would recommend it to anyone!

My second dexterity triumph was the next day, when I hemmed a couple of dresses. I used to be really good at this, hemming so that you couldn’t actually see the stitches on the outside. I now have to use a larger needle because of numbness, and to be able to see it well enough to thread it! But, it is still fine enough to produce a decent stitch.  The stitches aren’t as uniform as I used to be able to do, but you can barely see the stitches on the outside and I’m rather proud of that. There was just the one little incident when using the scissors, that my right index finger froze in a bent position–very painfully, I might add–and I had to get it to straighten out.  The pain was in my wrist, where I guess the muscle contracted and didn’t want to let go.  Oh well, what’s the fun in tackling something without a challenge or two.

So, I can proudly say that I managed two fairly challenging projects and triumphed! I’m rather proud of myself, I must say.  It has given me the ambition to tackle some crocheting with finer yarn and hooks!  We shall see if I can manage that.

I think it is always nice to stretch your boundaries every now and then. Enough with the same old, same old!

Well, folks, may you rise to meet all of your challenges and may you look to the new month like a blank canvas of many possibilities.  God bless!


Me and My MS


It’s actually rather difficult to rant on such a lovely, sunny Sunday, but I was trying to figure out a topic and this is what came to me.
I’m a glass is half full kind of gal and so I have to start with the good stuff first. The company I work for and the medical insurance company I deal with have been great, since my diagnosis of multiple sclerosis in 1994.
I had five pretty bad relapses in 1998 that allowed me to change the course of my disease. Before I went to see my neurologist that year, I did my research, with the assumption that we had to do something about the course of my disease. At that time, there were three drugs on the market, all injections, which could potentially help me. Betaseron, which was first on the market, Copaxone and Rebif. Avonex was not on the market yet.
So, I called my insurance company to see which they would cover. They told me that they would cover Betaseron and Copaxone, saying that Rebif was homeopathic (I know, crazy, right?). So, armed with that information, I went to my neuro, who said, “pick one.” Imagine that. I think that if it didn’t work, it wasn’t his fault, but there you have it.
I did a little more research and discovered the Copaxone had fewer side effects, so late in October of 1998, I began the daily needles. Fast forward to now—almost 17 years later, when I tried to get a refill and I’m told that the insurance company wouldn’t cover it. It turns out that as of last August they have a new policy. All expensive drugs (and this one is $1450 a month!) have to have the doctor fill in this paperwork, which, of course, took them a week to fax to me.
Now, it seems to me that a new policy like that should have been communicated to their customers right away, rather than when you are nearly out of it.
So, I called my doctor, whose receptionist says that he only fills in forms on Tuesday or Thursday at noon. The problem is that although my own doctor has been prescribing it for years now, I don’t know if he will sign it, or defer to the neuro. They would not allow me to fax it to them to see IF he would sign it first, so the first appointment is 3 weeks from now. I have four needles left.
I might have gone directly to my neuro, but the last time I tried to get an appointment between regular appointments, I was told, “He’s too busy to see you and can’t do anything for you anyway.” So, I wait. And I wait to see the effect on my MS, after nearly 17 years on it. Truthfully, the first four years I was on it, I didn’t have a relapse at all, but since then, I have had a very slow decline. Has it kept me from having any relapses, who knows?
Three years ago, my neuro documented that I was getting a bit worse each year. I can’t remember if his documentation actually said ‘secondary progressive’ or not, but if I am, I no longer qualify for Copaxone anyway. Hm, it might be that the retirement that I was hoping for next year might start with short term and then long term disability.
Am I up for a new adventure? I guess I have no choice. Let’s see where this takes me! My glass is always half full, remember? So, I wade into the unknown with a smile on my face.
God bless everyone, with their own adventures!

Wheat Belly


It has now been a full week on the wheat belly diet. I have lost 5.5 lbs. I’m feeling pretty good, better than I have for a while and I am sleeping well. How much of that is the placebo effect and how much of that is real, it is too early to tell, but I can tell you for sure that I am not hungry, but then I am eating a lot.
I knew I had to make some changes in my life to try to get back some energy and stop needing to sleep so much. It was such a major effort to get through a week of work. I have had the MS for 21 years, and I truly count my blessings because I am still upright. I have done better than many of my MS friends, but I was hoping to do better still. The MS still makes it a challenge to work full-time.
I am now working only four day weeks, though, which my boss agreed to. Last year I started my 9/80 program where I work 9 hour days Monday through Thursday, work 8 hours that first Friday and don’t work the second Friday because I will have already done my 80 hours for the two weeks. I have 6 weeks of vacation and 12 scheduled days off (SDOs)—one per month. So, I now take an SDO or vacation day for that first Friday, getting me down to 4 day weeks, each day being 9 hour days. Having said that, I often work even 10 or more hours a day, when I work from home which I do usually three of those four days.
Armed with my four day week and this wheat belly diet, I know I’ll get through the next year and into retirement.
I’m not exercising much. I don’t have much time or energy for that, but I get on my T-Zone vibration machine for 12 minutes and do stretches. I want to move up to working with the weights—cardio is a bit of a challenge, since my legs don’t move well. I do have an elliptical, a recumbent bike and a bow flex, so when I retire, I’ll have more time to make use of those, too.
This week, I need to be in the office three days in a row and when that happens, I stay in the city with a dear friend of mine, Viv. That way, I still only drive into, and out of, the city once.
So, folks, I’ll blog again next week about how the wheat belly thing is going, I need to work on adding some supplements, like iron, magnesium and iodine, and I’ll get to that soon.
Have a great week!

MS and my Faith


Last month was the 20th anniversary of my diagnosis of multiple sclerosis.

I remember sitting on the edge of my bed in the hospital and thinking that at least now I knew what it was.  I was in an unusual situation because since I am adopted, I have no family health history.  So, I had no clues as to what the symptoms might have been.  At the time of diagnosis, I was the single parent of two young girls, who were three years old and 20 months old.

I think that for most people, that would have been a very frightening time.  I have always believed, though, that God never gives you more than you can handle.  Looking back on the diagnosis, though, I knew then, as I know now, you just need to have a great attitude and keep going.  That may seem rather smug to some, but having worked for many years with the MS Society, I can confirm that it is the best thing to do.

Now, I will say that despite, my MS, I have been very blessed.  I am still upright.  There have been rough times, but so far, I have only needed either a walker or cane to help me to get around.  I have some memory difficulties, so I compensate with reminder notes.  Every symptom, at least so far, there has been a compensating control for.  Can you tell I work in IT compliance—always the logical one!

Compensating controls have had to include three months off work to recover from a five relapse year, injecting Copaxone for 15 years, constant reminder notes, Poise pads for bladder difficulties, assistance with dressing in the morning, and planning my activities, so that I don’t get too tired.  It is all doable stuff to keep me going.

So, in the last 20 years, I raised my kids on my own, managed to continue to work full-time so that I can actually retire soon and fit in courses on teaching adults and writing for children and actually writing for children.  All of that, living with MS and, of course, my faith that God will always help me to manage.

My MS became secondary progressive about seven years or so ago.  But again, I am blessed with a very slow progression that means I shouldn’t need a wheelchair for quite a few years yet.