I have only had my diagnosis for five weeks. Some days I feel like I was diagnosed a year ago and some days it feels like yesterday. There is so much to learn and understand and research and decide. It's safe to say that my condition is still on my mind every couple of hours.
But that's what I have to work with. I have to remember it's only been a month! A month of thinking about something that will be with me for the rest of my life. I sometimes get frustrated and feel like I should have the answers by now. I should know how I'm going to handle everything, life moves on, let's not dwell. The reality is, it's not dwelling. I'm allowed to feel frustrated and scared and angry. I don't have to put on a happy face and act like everything is fine, just so others feel better about my condition.
I went to the neurologist yesterday. He's obviously seen it all. He knows what a textbook case of MS looks like and he knows that what I'm going through is normal. He doesn't downplay my condition but he's also very seriously not alarmed by what I'm reporting and really, that should make me feel better. If your doctor is freaking out about your condition, it's probably pretty serious and they're not used to seeing it. Laissez faire attitudes should really keep me calm.
The other side of me wants to be assured that nothing that I'm going through is normal. Your foot is numb!? Jesus! That's crazy. You can't feel your hand and your vision is gone?!? GTFO! Let's all acknowledged that what's going on is super shitty.
Obviously, I much prefer the medical equivalent of 'par for the course' but when it really boils down to it I'd rather have none of this. So I'll let the Dr. play it cool while I go bananas on the inside.
MS. Diagnosed
Wednesday, 17 July 2013
Friday, 12 July 2013
Insomnia
Tuesday was not a great day. I ended up leaving work halfway through the day because of a very wicked migraine and hand numbness. I had a lot of work to do, some big deadlines to meet that day, but I could barely keep my eyes open.
The hand numbness lasted about 24 hrs in total, but there is definitely residual weakness from the flare up.
Luckily, I work for my family. I called my parents and told them what was wrong. I think the distress in my voice was pretty obvious and everyone jumped into action for me. Calls were made to my neurologist. Thankfully, he was able to send a prescription to my pharmacy for Prednisone. So, for the last three days I've been on high dosages of that to help reduce the relapses that I'm having.
In other good news, the call the neurologist helped to score my an appointment for next week. Hopefully this means I can be put on some regular medication a bit sooner. I've had some ups and downs with my support for taking the drugs, but I really was never expecting to have this many symptoms so quickly. I need to get control of this so life can resume normally.
If this all seems garbled and incoherent it's because it's 3:41 am and I seem to have gotten the side effect of insomnia from these drugs. Thankfully the dosages start to taper off tomorrow and I can hopefully feel like myself again soon.
~MS Diagnosed
The hand numbness lasted about 24 hrs in total, but there is definitely residual weakness from the flare up.
Luckily, I work for my family. I called my parents and told them what was wrong. I think the distress in my voice was pretty obvious and everyone jumped into action for me. Calls were made to my neurologist. Thankfully, he was able to send a prescription to my pharmacy for Prednisone. So, for the last three days I've been on high dosages of that to help reduce the relapses that I'm having.
In other good news, the call the neurologist helped to score my an appointment for next week. Hopefully this means I can be put on some regular medication a bit sooner. I've had some ups and downs with my support for taking the drugs, but I really was never expecting to have this many symptoms so quickly. I need to get control of this so life can resume normally.
If this all seems garbled and incoherent it's because it's 3:41 am and I seem to have gotten the side effect of insomnia from these drugs. Thankfully the dosages start to taper off tomorrow and I can hopefully feel like myself again soon.
~MS Diagnosed
Monday, 8 July 2013
What Am I Afraid Of?
I prompted myself to write this post about a week ago. I felt that I was going to have so much to say about my fears for the future, but I just can't get into that mind set anymore.
I'm afraid, of course. I'm afraid of lots of stuff. I'm afraid of flying and crossing big bridges. I'm afraid of really wicked storms. Ultimately I'm afraid of the end.
If I had started to write this last week, as planned, the post would be about growing weak. It would be about being a burden to my family. It would be about potentially not having an income. It would be about being held back from doing things I dream of.
I'm still going to do the things I want to do. I'm just going to make sure to do them sooner than later. Going to Europe next summer, investing for retirement, buying a new house. At this point everything is still attainable. By doing the big things I want to do I'm freeing up time later to come up with new dreams, new things that I want to accomplish. Maybe my dreams for later will have to be a bit closer to home, but that's fine by me.
So, what am I afraid of? Nothing that I wasn't already afraid of before my diagnosis. Except, maybe, how I'm going to fund my European Extravaganza....time to start saving!
MS. Diagnosed
I'm afraid, of course. I'm afraid of lots of stuff. I'm afraid of flying and crossing big bridges. I'm afraid of really wicked storms. Ultimately I'm afraid of the end.
If I had started to write this last week, as planned, the post would be about growing weak. It would be about being a burden to my family. It would be about potentially not having an income. It would be about being held back from doing things I dream of.
I'm still going to do the things I want to do. I'm just going to make sure to do them sooner than later. Going to Europe next summer, investing for retirement, buying a new house. At this point everything is still attainable. By doing the big things I want to do I'm freeing up time later to come up with new dreams, new things that I want to accomplish. Maybe my dreams for later will have to be a bit closer to home, but that's fine by me.
So, what am I afraid of? Nothing that I wasn't already afraid of before my diagnosis. Except, maybe, how I'm going to fund my European Extravaganza....time to start saving!
MS. Diagnosed
Wednesday, 3 July 2013
The Phantom Itch
Here's a new and exciting symptom! I'm calling it the Phantom Itch. It started Monday July 1st in the evening. It's on my left arm and it's an itch just about where a t-shirt sleeve would end. It's insanely itchy but when I go to scratch it I can't pinpoint where the itch is originating and so I end up scratching or rubbing the whole upper arm. The second I stop scratching it's itchy again!
It almost feels like a hair is on my arm and tickling me. I'm getting all red and blotchy because I can't stop scratching. I feel as if this is heat related because I don't notice it at work where I have air conditioning. At home we don't have central air and I've mostly noticed this the last 3 evening when I'm sitting on the couch.
I don't want this blog to be a diary of complaining, but I am using this as a tool to keep track of symptoms for my next Neurology appointment in September.
Fingers crossed this isn't a symptom that lasts.
~MS. Diagnosed
Edited to add: I put an ice pack on the itching and it seemed to relieve the symptom.
It almost feels like a hair is on my arm and tickling me. I'm getting all red and blotchy because I can't stop scratching. I feel as if this is heat related because I don't notice it at work where I have air conditioning. At home we don't have central air and I've mostly noticed this the last 3 evening when I'm sitting on the couch.
I don't want this blog to be a diary of complaining, but I am using this as a tool to keep track of symptoms for my next Neurology appointment in September.
Fingers crossed this isn't a symptom that lasts.
~MS. Diagnosed
Edited to add: I put an ice pack on the itching and it seemed to relieve the symptom.
Tuesday, 2 July 2013
Why it's Hard to Spread the News
I've told very few people about my diagnosis so far. There are a few reasons that I'm holding back.
1) I've only had one appointment with my neurologist so far and I don't have a lot of answers. When you tell people about a diagnosis they have a lot of questions, and at this point I won't know what to say.
2) I've only had one appointment with my neurologist so far and a piece of me really hopes that at my next appointment he says, "whoops, I was totally off the mark. You're fine!"
3) There's no cure. I'm not starting a fight that will eventually be over and we can all celebrate. This is something that I'm going to deal with forever (If #2 doesn't come true...). I feel like bringing other people into this situation creates a scenario where they can't do anything to help and are burdened with knowing about my MS.
4) I don't want to create pity parties for myself.
5) I don't want it to seem like I'm seeking attention. My symptoms are fairly minor so far. People can't tell by looking at me and so why bother telling them at all?
At this point MS is in my thoughts all the time. It seems to me that keeping this a secret is a lot more difficult than just letting people know. So I think that I will start to spread the news, slowly.
In other news, the foot numbness that I had for over a week seems to be gone. Now, if only my eye would function normally. If I could see properly after 9 weeks of blurriness maybe I would be able to think about something else for a change.
~MS. Diagnosed
1) I've only had one appointment with my neurologist so far and I don't have a lot of answers. When you tell people about a diagnosis they have a lot of questions, and at this point I won't know what to say.
2) I've only had one appointment with my neurologist so far and a piece of me really hopes that at my next appointment he says, "whoops, I was totally off the mark. You're fine!"
3) There's no cure. I'm not starting a fight that will eventually be over and we can all celebrate. This is something that I'm going to deal with forever (If #2 doesn't come true...). I feel like bringing other people into this situation creates a scenario where they can't do anything to help and are burdened with knowing about my MS.
4) I don't want to create pity parties for myself.
5) I don't want it to seem like I'm seeking attention. My symptoms are fairly minor so far. People can't tell by looking at me and so why bother telling them at all?
At this point MS is in my thoughts all the time. It seems to me that keeping this a secret is a lot more difficult than just letting people know. So I think that I will start to spread the news, slowly.
In other news, the foot numbness that I had for over a week seems to be gone. Now, if only my eye would function normally. If I could see properly after 9 weeks of blurriness maybe I would be able to think about something else for a change.
~MS. Diagnosed
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