Just a few quick words....

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.



That takes us to how things are sort of working in my head about myself and how I'm wanting to do things about spreading the word on scleroderma and helping others with it. I just kind of jumped in feet first without a real plan. Still no plan but things seem to developing in my head a bit more. With twitter I'm hoping to just mainly send out things I find help with coping or day to day life. As well as important messages about scleroderma and the community. With my blog I plan to write more in depth about my experiences and thoughts and my coping strategies. With Facebook and google+ (more Facebook) I plan to bring both my blog and twitter to it so people will have one central place to check it. I would also like to use Facebook to grow my contacts with anyone wishing to connect and share, if anyone will be my Facebook friend :( So far no one does lol. I'll also post links to articles and other blogs, etc. Anything that might help someone but not drown them in medical jargon. I'm also hoping to setup one of my idevices (iPhone,iPad,or iPod) ,after I've grown my contacts a bit, with iChat for anyone needing to reach out.

I would like to mention at this point that I speak bluntly and frankly. I don't mince words. I swear. I'm not politically correct. Frankly scleroderma has made all of that a headache I just don't bother with. Anything I may consider above average in the "people may be offended" category will have a warning in the first few lines introducing my topic. You've been warned. Complaining wont change a thing. These are my experiences and thoughts. I hope to help everyone but realize what works for me won't work for everyone.

Ok so where I stand today health wise. I suffer from CREST. I also have a neuropathy in my legs and arms that were the breaking point for me in regards to work. I just couldnt work and balance my health anymore. I stopped work in October, 2010. Since stopping work the neuropathy has stayed rather constant with occasional painful flare ups. However my scleroderma symptoms have improved. I have been focusing on improving my health now that I have the time. I suffer quite badly from "contact point" ulcers. Anyplace that gets repetitive use on my hands eventually develop into ulcers eg: doorknobs, I develop a line of ulcers that line the outside of my index finger and the inside of my thumb. I put a lot of focus on reducing the use of my hands in repetitive ways (a future blog post). I'm covered with telangiectasia. I have raynauds.  I don't suffer from sclerodactyly except for a few minor spots more to do with scar tissue and damage to the area then anything else. I always have calcinosis of some sort on my fingers (ditto with the ulcers/deposits) but again since being off work these have subsided somewhat. My greatest battle is my stomach and digestive system. It's my current focus of improving my health and the main reason I had to stop work next to the neuropathy. Medications do not react well in most cases. I have problems swallowing like most but I do not choke. Food gets stuck but usually a few sips of a drink is enough to get it down. That's the easy part for me. I'm never hungry. I'm always nauseated. I always have a grinding or bloating in my system. The list goes on and on and every symptom can be aggravated by either food or medication. My current goals are to be able to eat more and gain some weight. Simple but thats how I focus. Im a strong believer in "keep it simple stupid" I'll be happy if I can put on 5 pounds by the time I go to see my doctors next. Fatigue is also a huge problem for me. Aggravated by nutrition problems from the GI issues and lack of sleep from the ulcers and neuropathy. Throw in medications that can either aggravate the fatigue itself so I'm barely able to focus or get my blood pumping so much I can't sleep and I can be a walking zombie for long periods. If you'll pardon the pun here. My biggest pain in the ass would be ulcers on the buttocks.

My doctor likes to show me off because I have most of the major symptoms of scleroderma but in a mostly minor way. Whereas some people suffer from one or two symptoms severely I suffer from most symptoms but most aren't severe. Throw in being a man and having developed the disease at a young age and I'm a great teaching tool. I'm always greeted and interviewed by a group of residents first. I have no problems with this (and frankly even if I did I would do it and suggest anyone with the opportunity to take it). Any chance to help a DOCTOR to be able to detect this disease quickly should be jumped on. I do not suffer lung involvement or any major organs outside of the GI issues. Most of of my discomfort comes from the accumulation of damage over the years rather then any particular symptom. At least on the outside. My GI issues are a constant and changing battle.

So there you go. That's me currently. So much for just a few words but hey you try and sum it all up after almost 20 years  in just a few lines. That was just a quick summary. Please feel free to ask if I've dealt with a symptom and if so how I dealt with it.  I could write an entire post on my current symptoms as I'm sure anyone with this disease could.  I hope I can help just one person. Please reach out if you need help.

Until the next post,
Scleroguy