I win this round body!

Ha! I win this round body! Suck iiitt!

So my body woke me up around 330 yesterday morning. Usually this is a precursor to a GI attack. I always forget this and did again. I tossed and turned trying to get back to sleep and finally gave up and got up around 6. I went and got a coffee and a BELT (bagel, egg, lettuce, tomato and bacon). Around 730 I got that familiar tightening in my lower abdomen. Shit!

I had some gas and eventually got the urge to go to the washroom. Nothing! My stomach wasnt emptying either. I was starting to get nauseous. Not good. For me, if I can stop myself from throwing up in those first couple of hours it will lessen the length of my attack by hours even days. I managed to go a little bit. Enough to make space. It kind of kickstarted my system. Good in that it gets things going. Bad in it causes more nausea.

Time for emergency action. This was a middle of my GI system attack. There's nothing I can do but wait it out. So I broke out my emergency routine.

Before explaining it I want to say, I do not reccomend this except in dire circumstances. It can result in severe dehydration and weight loss.

So the routine.

Step 1. Anti nausea med. I chose marijuana. For the record I am not a fan of using it that early in the day. I prefer the end of the day when I'm done doing everything I have to do. I do prefer to function though and gravol messes me up way more. Like hallucinate mess up. Not high on my list of things to do at 8 in the morning.

Step 2. Run the shower. Hot.

Step 3. Get in the shower.....do not get in the water. Put the shower curtain between you.

Step 4. Lay in the bottom of the tub so you're on an incline. I have a couple of inflatable pillows I use. One for my butt and one for my shoulders/neck. For that spot where the edge of the tub grinds against your spine.

Step 5. Wait for the steam to warm your body. It might be a bit cold at first, the steam can take awhile to warm you.

Step 6. Zone out. Enjoy the heat. Feel it spread out and try to relax like you would when enjoying a hot bath.

Step 7. Do a self check. Are you feeling better? If you can still feel pain or bloating, in a nauseating way, put the lower half of your body under the water. For me this is usually around the belly button. Put the area that's hurting under the stream of water (powerful showers are the best for this. The misty water saver ones barely help). In 99% of my cases the water hitting that area distracts me and lessens my nausea to almost non-existent. It's almost like there's to many sensations for the nervous system to relay and it lessens the discomfort as it trys to relay all the sensations of the water hitting you in that area in a non painful way and it's to much to also send the pain.

Step 8. Lean back, relax and try to feel where the discomfort is coming from. I can tell how long I'm going to be bothered by locating the problem.

Step 9. Zone out, sleep, relax. Let everything go. Attacks go much quicker if you're not clenched in worry or discomfort.

Step 10. Cool down and sit up. I do this by turning the water down slowly until it's the coldest I'm comfortabe with. Then I'll sit cross legged for a few minutes, on the dry side of the curtain. This is the final test. The colder water causes things to clench and tighten. Do you still feel nauseous? Is it tolerable? Yes? Get out. No? I usually enjoy the cold a bit more (yeah I know it's weird what with raynaud's and all) but then I'll just repeat the heat and relaxation til it's gone.


Step 11. ONLY IN THE WORST CASE SCENARIO!  Get under the water completely. I highly suggest having a couple of bottles of Gatorade on hand through this whole thing but especially if you go fully under the water. You can get severely dehydrated making new problems for yourself. Trust me I've learned the hard way.

That's it. This works amazingly for me. In almost every instance this will prevent me from throwing up and in general make me feel way better. If you're not a fan of running the water that long you can also plug the tub and let it fill as the shower runs. once it's full you can enjoy the bath until it cools and it can help as well.

The key I've found is the constant body temperature. I've only recently discovered that. I used to go fully under the water every time. I sweat and shiver and clench and moan when I'm praying to the porcelain gods. Avoid all that and things go much quicker. Avoid dehydrating yourself to much and you don't lose the insane weight I have from it.

Once again I'd like to state this works for me. I don't recommend it unless nothing else works and like me you end up a mess for days. It can be dangerous and it may not work. Try at your own risk.

For me I was over my attack around 1030. It was caused by painkillers slowing and blocking me up. It was a severe enough attack that if I hadn't done "my shower thing", yes that's what I call it :p, I would have lost yesterday and most likely all of today if I hadn't been able to sleep tonight due to vomitting.

I win body!

To be clear this wasn't the end of the attack. It just got me through the worst of the nausea. I spent the day laying down and flipping from side to side. This helps move what's in my system through. I have severe motility issues and the flipping helps move things through quicker (yay for gravity).

Twitter brings us together

Everyday that I use Twitter is another day that amazes me. I originally signed up close to when it began. I never really got it. Most of my friends and family are not technologically inclined. Luddites. I'm not obsessed with celebrities. In fact the coverage most get irks me. The one thing I do like is tech news. Obviously they were all over Twitter. Then I gave up work due to my health.

App roundup

I spend most of my days on my iPad. I thought it might be nice to share some of the apps I use in conjunction with my scleroderma and health issues. Some are medical apps, some are just apps to fill the day. So in no particular order, let's get started.

Scleroderma and Marijuana

Woohoo! Controversy! This post is all about marijuana and scleroderma. It's going to be a long post. I've come to learn a lot of scleroderma patients are interested in learning more and possibly trying it to treat symptoms but can't find any information. They usually don't know much about it period so I'll briefly cover some common fears as well.  I've also learned some doctors are fine with it and others are dead against it. I hope they see this and change their minds.

Disclaimer! These are my experiences with my health issues. Marijuana isn't always a good thing with certain meds or illnesses. Be sure to check about medication problems etc. A quick example. If I smoke marijuana while on 2 or more painkillers I shut down. I get very slow both mentally and physically. I don't have heart, lung or kidney involvement. I don't know how it might react with your illness or meds. Like anything medical. Do your homework.

My hope for new scleroderma patients

I have a dream! Ok well nothing that dramatic but I do have a wish for scleroderma and patients newly diagnosed. I would love for there to be a central landing page of sorts for new patients. One that doesn't scare the ever living hell out of them. On top of that, any doctor giving the diagnosis must give the patient the web address with a pamphlet outlining what scleroderma is and have that pamphlet advertise the same web page.

The next day.....refreshed

So I've had a rough couple of weeks due to my neuropathy. My mobility has been greatly reduced. Getting around the house is ok. It's anything outside that's been rough. Groceries have suffered for example. It's why I haven't posted much on the blog, though I've written a few I didn't post because I found I was a little bitter and the posts weren't the spirit I wanted to convey.

You can't win them all.

Sometimes we lose. Why not turn it into a win or a draw? Let me clarify. I went to bed the night before last with many great dreams and plans for the next day. Do some housecleaning, go out to eat, write an article, phone some friends and hit the pharmacy and grocery store. Then I woke up, rather, I was abruptly woken from a peaceful sleep by a shooting pain in my left elbow. Well shit! I knew that feeling. Just tore open the ulcer on my elbow when I rolled over and my sweater snagged a hook on the ulcer. Meh. Not to bad I thought. No more sleeping but the pain should be manageable. Don't even think I'll need a painkiller. Then I got up and started the morning routine. Owww! Wtf!? Yup I just tore open the ulcer on my other elbow while changing. Hmmm ok. Didn't even know I had an ulcer on that elbow. I waited about 45 minutes before deciding to take a painkiller. Well, there goes today's plans. Fuck.

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.

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.

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.

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