A few quick words. I thought I would give people a run down of my current symptoms so they would have an idea where I'm coming from. I'll run it down at the end of what I have to say here first though. Most of what I plan to talk about is about the past and I'll be dealing with the symptoms I had at that time not where I am now. I'll also be speaking about mental states and positivity a lot. Please know that I'm not a neurotic optimist. As I mentioned in my introduction, I'm told I'm abnormally positive. I just want to share some of the tips that help me. I have down days. If anything I would consider myself apathetic not optimistic most of the time. I will also have some posts about those down times in the future.
Monday 27 February 2012
Friday 24 February 2012
The Hidden Blessings
Hidden blessings. Wait. What? How could this disease possibly have any blessings? Well, the disease itself doesn't. However, some of the changes it causes are. How? Probably the most important thing for me. I know who my friends are. Drama and fake friends are not needed in my life and are quickly weeded out. This can be one of the harder things about scleroderma at first. The loss of friends when you get diagnosed. Well I'm here to tell you that it gets better. Way better. I know who I can call now to talk to. Some of my best friends are old friends. Old friends from highschool kind of old. They don't treat you differently unless they have to. I mentioned the friend who forced me to go to the ER in my post on my diagnosis. To this day we have a running joke about "ass candy" because he was there when I was trying to get the worst of those symptoms under control and was aware I was having to use suppositories and enemas almost daily. He made me laugh about it. At the lowest I've ever been he made me laugh. That matters.
Tuesday 21 February 2012
Journey to a diagnosis
My first blog post!
Since it’s the beginning of and first post on my blog, let’s start at the beginning. My symptoms, diagnosis and what led to it. Arguably one of the most difficult periods any scleroderma patient will go through. Each person has different symptoms, doctors don’t know what’s going on with you. Your friends and family see the changes but no one seems to be able to help. It’s a pretty standard story from those with scleroderma and I’m no exception.
My first symptoms appeared around the age of 16/17. Depending on who you ask my first symptoms were Raynauds phenomena and collagen deposits/ulcers on the tips of my fingers, that’s my opinion. If you ask my mother she says it was fatigue. I agree to an extent but hindsight being what it is I know I was a lazy bugger at that point in my life.
Since it’s the beginning of and first post on my blog, let’s start at the beginning. My symptoms, diagnosis and what led to it. Arguably one of the most difficult periods any scleroderma patient will go through. Each person has different symptoms, doctors don’t know what’s going on with you. Your friends and family see the changes but no one seems to be able to help. It’s a pretty standard story from those with scleroderma and I’m no exception.
My first symptoms appeared around the age of 16/17. Depending on who you ask my first symptoms were Raynauds phenomena and collagen deposits/ulcers on the tips of my fingers, that’s my opinion. If you ask my mother she says it was fatigue. I agree to an extent but hindsight being what it is I know I was a lazy bugger at that point in my life.
An introduction....come say Hi!
Hello and welcome!
So what's going on here? Well let me explain. I'm a 35 year old Canadian male who has lived with limited systemic sclerosis (aka Scleroderma aka CREST), for almost 20 years. I've recently had to stop working due to my health and have been looking for something to fill my time and at the same time help others coping with scleroderma. Hence, scleroguy was born!
Using social networking, over time, I plan to post about things have, do and will affect my life and possibly others living with this disease. I have been told I'm an abnormally positive person when it comes to scleroderma and given that I'll probably post a lot about staying positive. I also hope that a long term male patients perspective may help newly diagnosed men to cope with some of the changes and stresses that they may not have anticipated. No topic will be off limits for me and I will speak openly and honestly about anything I cover here.
I'm a very open person and have little to hide when it comes to scleroderma so I invite anyone and everyone to follow my blog, twitter, Facebook or google+. Feel free to ask me anything. I will respond as quickly as I can. That said remember I have scleroderma and allow for a delay. I have bad days to ya know.
I guess that's about it. Just a small introduction. Stay tuned for my first post about my journey to a scleroderma diagnosis!
I look forward to getting to know you all.
Scleroguy
So what's going on here? Well let me explain. I'm a 35 year old Canadian male who has lived with limited systemic sclerosis (aka Scleroderma aka CREST), for almost 20 years. I've recently had to stop working due to my health and have been looking for something to fill my time and at the same time help others coping with scleroderma. Hence, scleroguy was born!
Using social networking, over time, I plan to post about things have, do and will affect my life and possibly others living with this disease. I have been told I'm an abnormally positive person when it comes to scleroderma and given that I'll probably post a lot about staying positive. I also hope that a long term male patients perspective may help newly diagnosed men to cope with some of the changes and stresses that they may not have anticipated. No topic will be off limits for me and I will speak openly and honestly about anything I cover here.
I'm a very open person and have little to hide when it comes to scleroderma so I invite anyone and everyone to follow my blog, twitter, Facebook or google+. Feel free to ask me anything. I will respond as quickly as I can. That said remember I have scleroderma and allow for a delay. I have bad days to ya know.
I guess that's about it. Just a small introduction. Stay tuned for my first post about my journey to a scleroderma diagnosis!
I look forward to getting to know you all.
Scleroguy
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