So since 2000 my MS I must say it has been relatively calm. I have never been hospitalized nor have I ever really felt scared. That doesn't mean I haven't had issues.
What started as numbness and tingling in my hands and arms, soon expanded into L'hermitte's sign. This is when you look down and an electrical current shoots through your body and every time it happened, it would present in a different part of my body. It has shot down my leg, out the end of my elbow, but my favorite was when I looked down one time and it felt like someone was grabbing me around the waist. It was kinda creepy.
Then it was a little more than uncomfortable when I started having "issues" with my bladder. It felt like I had to go non-stop! It was like I had a bladder infection all the time! Just in case you ever experience this and there is no infection, take Ativan. It relaxes it enough to sleep through the night. THEN I got retention which means I couldn't go! Scary especially knowing my grandmother who had MS had to self-catheterize for years. There was no way in HELL I was going to do that at 30 years of age! So believe it or not, I discovered the more water I drank, the more pressure I had to go , and the less likely it would cause infections. I have been years without issue now because of this.
I have learned that shoving your numb appendage in the freezer reduces the tingling and that air conditioning is my new best friend. My symptoms have moved all over my body but I am lucky to have never experienced paralysis nor vision issues.
I have however started to experience cognitive issues where words escape me and I find people finishing my sentence for me all the time. I grew up with a brother who was "quick" when it came to smart ass comments and making jokes. I, however, have trouble finding the word "cat'. What used to be a passion of mine when I was younger, now driving is something I do when I feel confident enough to do so. My neurologist thinks it isn't MS but a migraine in my neck that has been causing pressure and the best way to describe it, is that I feel off when I drive.....not clear headed. Sometimes I wonder if it's anxiety. Either way, I am beginning to feel like I am losing my independence. I hate having to depend on my husband to do all the driving in the city....he thinks its just me being nervous. I can't honestly say what it is. All I know is that every day I feel more and more like giving him space to just live a normal life. I feel like I am holding him back from a life that could be exciting and everything he deserves. I feel like I am robbing him of a normal marriage one where the wife can help him as much as he helps her.
I guess this is where it leads into the most difficult part of this illness. While for the most part I put a smile on my face and push through everyday, the depression is becoming more and more difficult to deal with. Realization is hitting that I might not be able to keep up with what I have in the past. My husband is gone alot for work and I have no family in town. Sure I have friends but have never been the one to ask for help....EVER. In fact my daughter is 14 and I am going on my first vacation without her coming up only because she is going on a school trip at the same time. I guess I am just getting my thoughts out there and hopefully will be able to find others with similar issues.
By writing this, I am hoping to find out what is "normal" and what is MS. =)
Monday, 11 March 2013
The Beginning
While January 2000 was to be a bright new beginning for all, I was not so lucky. I had just turned 24 the November before and although I had just given birth in February, my husband and I were already considering trying for another.
January 13th, 2000:
My husband and I were leaving that week to finally take the honeymoon we never got to have and I was incredibly stressed that the money we needed to travel had not come in from pulling our savings. On top of all that, while having an emotional conversation at Christmas with my father in law about my daughter's colic, he states and I quote, "I guess they don't make mother's the way they used to." Another moment in the 2 years knowing them where I felt less than good enough for their son. Although I should have shaken it off , my nature at the time was to over analyze and replay the situation over and over in my head. I remember thinking about it to the point of shaking I was so angry. Needless to say, I was beyond stressed. I needed this vacation.
I remember it like it was yesterday,
I began to pour the hot water to wash the supper dishes and proceeded to put away the left overs in the fridge. As I returned to the sink and reached my hand in, the feeling was bizarre and foreign. It felt as though my left arm was inside a rubber glove. I couldn't feel the water and my brain couldn't process what was going on. I was instantly terrified. "Why can't I feel it?" I called out to my husband and told him what was going on and although he looked concerned, it wasn't like him to worry about things. My grandmother had MS and it was the first thing to enter my mind. By the next morning my the numbness has spread to as small patch about my lip and over the course of my honeymoon I experienced numbness in my left leg as well.
To make a long story short, after numerous visits to a number of different doctors, one finally sent my to a neurologist who discovered 2 lesions on my brain. Inconclusive but if the numbness transfers to the other side, it is more than likely MS.
July , 2000:
My husband and I had just moved to Fort McMurray Alberta from small town saskatchewan. We lived in a fourth floor apartment with no balcony and our view out all of our windows was of a cemetary and looking down we would regularly see guys smoking crack behind a dumpster. My daughter was 18 months old, we had no friends, my husband worked 16 hour days, 16 days straight and I was depressed. Numbness spread to right arm and I mentally confirm I have MS.
August 18, 2001: (yes a year later)
After another MRI and the addition of another lesion, they diagnose with me with MS. I had already come to terms with it and done my crying at home alone so my neurologist was a little taken aback at my lack of emotion. They put me on Copaxone....daily injections of an amino acid that seems distract my immune system so that it attacks the copaxone instead of my own cells. For the first few years the needles were powder and water in two different vials. I had to mix my own and the needles were sharp. But there came a time where they decided to pre-mix the copaxone which meant that the needles were different. Boy were they ever! So different, they didn't puncture the skin. While I had spent the last few years manually injecting myself with a quick 1-2-3! I now had to depend on a gun to slam it into the skin and with a full CC to inject, you could be certain it wasn't pleasant when it was being injected by a gun.
Eventually the anxiety of the needles got to be too much and they sent me for retraining which was pointless and in the end I was removed from my meds. My doctor stated that my diet and exercise had probably done good that the meds had done anyways. Because over the 12 years, my MS had been relatively calm and in the blogs to come I will talk a little more about my symptoms and how I have dealt with my "MonSter".
January 13th, 2000:
My husband and I were leaving that week to finally take the honeymoon we never got to have and I was incredibly stressed that the money we needed to travel had not come in from pulling our savings. On top of all that, while having an emotional conversation at Christmas with my father in law about my daughter's colic, he states and I quote, "I guess they don't make mother's the way they used to." Another moment in the 2 years knowing them where I felt less than good enough for their son. Although I should have shaken it off , my nature at the time was to over analyze and replay the situation over and over in my head. I remember thinking about it to the point of shaking I was so angry. Needless to say, I was beyond stressed. I needed this vacation.
I remember it like it was yesterday,
I began to pour the hot water to wash the supper dishes and proceeded to put away the left overs in the fridge. As I returned to the sink and reached my hand in, the feeling was bizarre and foreign. It felt as though my left arm was inside a rubber glove. I couldn't feel the water and my brain couldn't process what was going on. I was instantly terrified. "Why can't I feel it?" I called out to my husband and told him what was going on and although he looked concerned, it wasn't like him to worry about things. My grandmother had MS and it was the first thing to enter my mind. By the next morning my the numbness has spread to as small patch about my lip and over the course of my honeymoon I experienced numbness in my left leg as well.
To make a long story short, after numerous visits to a number of different doctors, one finally sent my to a neurologist who discovered 2 lesions on my brain. Inconclusive but if the numbness transfers to the other side, it is more than likely MS.
July , 2000:
My husband and I had just moved to Fort McMurray Alberta from small town saskatchewan. We lived in a fourth floor apartment with no balcony and our view out all of our windows was of a cemetary and looking down we would regularly see guys smoking crack behind a dumpster. My daughter was 18 months old, we had no friends, my husband worked 16 hour days, 16 days straight and I was depressed. Numbness spread to right arm and I mentally confirm I have MS.
August 18, 2001: (yes a year later)
After another MRI and the addition of another lesion, they diagnose with me with MS. I had already come to terms with it and done my crying at home alone so my neurologist was a little taken aback at my lack of emotion. They put me on Copaxone....daily injections of an amino acid that seems distract my immune system so that it attacks the copaxone instead of my own cells. For the first few years the needles were powder and water in two different vials. I had to mix my own and the needles were sharp. But there came a time where they decided to pre-mix the copaxone which meant that the needles were different. Boy were they ever! So different, they didn't puncture the skin. While I had spent the last few years manually injecting myself with a quick 1-2-3! I now had to depend on a gun to slam it into the skin and with a full CC to inject, you could be certain it wasn't pleasant when it was being injected by a gun.
Eventually the anxiety of the needles got to be too much and they sent me for retraining which was pointless and in the end I was removed from my meds. My doctor stated that my diet and exercise had probably done good that the meds had done anyways. Because over the 12 years, my MS had been relatively calm and in the blogs to come I will talk a little more about my symptoms and how I have dealt with my "MonSter".
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