Support Website

I have found another support website for people like me living with PSC and also for family and friends who support people like me. http://www.livingwithpsc.org/ is a site that has forum discussions as well as blog postings for PSC'ers and their support system.

I have some difficulty using the PSC support group on Yahoo and I think that is because it is a forum I am not used to. They also have a group on face book but I haven't really said much in there. I was looking to see if there were any support groups locally but the closest group is in Mt Sinai, NY. I don't think I will be travelling that far.

I wish that I could meet with people and talk face to face about some of the issues that we all face. My mother would also like to meet with others to get more information. The nurse in her kicked in because she had never heard of PSC before I was diagnosed.

I don't know maybe I can come up with some ideas on how to get people living in my area together. I just know that this is one battle that I would not want to face alone.

I will try and pull some information together and post it. I know I started this blog and I really didn't get into detail about what PSC really is so I need to correct that oversight.

Feeling Pretty Good

Today I am feeling pretty good. I did another walk from my daughter's school to my house and it was invigorating. I know given time my walks will become a regular routine. Normally I am ready for a nap around 10 am but today I am still up and running. That feels good as well.

Fatigue can be a bit much sometimes especially when there are things I would like to be doing but have trouble focusing on because my body feels worn out. I look forward to having more days like this and maybe accomplishing a few things in the process.

I want to focus on writing more as well as studying for this exam. I will have to learn out to map out my schedule and make it happen. I know that it can be done in spite of what I feel like on most days.

Walking

I started to get back into walking. Talk about muscles hurting everywhere. It is a good thing though. I needed to be more active and since I have been having other problems I thought walking would help with some of my digestive issues. Yesterday I did almost 2 miles and it felt good to say that I made it. I am looking forward to finding other ways to help get my weight under control and maybe ease some of the problems I have with PSC.

Now it is my understanding that exercise will help with some of the fatigue symptoms I feel. I am not sure if that is the case but one can only try to make things better. I wished it would help with my insomnia. It is irritating to have both fatigue and insomnia. I am asking myself how does that happen, but my body has been on it's own little ride for the past year. I am just trying to find a focus for it.

Still Working Through

Well I am still working my way through trying to find ways of coping. I am trying to eat better and get more exercise in. Some days it is really hard because I feel so drained but I know I have to keep pushing so that I can have better days. Today hasn't been too bad. I started out with a light meal then of course the usual issue happened.

Eating healthier does mean I get hungry faster but that is okay as long as I stick to eating healthy foods. So a salad with some fruit has gone a long way to helping curb my appetite. Biggest goal is to stay away from junk food and heavy greasy foods that tend to make me feel nauseous. On step at a time.

Been A Little While

I haven't said much about what has been going on with me but today is just not a good day. I really hate the changes because it seems as if I cannot find a common ground. I remember the days of being okay and now it feels like they are so far away. I know I can't bring them back but I want to feel some type of normalcy in my life.

The best I could imagine right is just not feeling like my body is holding onto everything it can. Smh. I will resist the urge to scream and beat my head against the wall but even that has become difficult. One step and one day at a time.

Long Day

Well I can't complain today wasn't too bad. I did have moments where my stomach bothered me and my GERD started acting up but overall the day was pretty good. I really need to work on finding a nutritionist that knows a little something about what is happening to me. The lack of information or knowledge is astounding. I know that in time more information will become available but it makes it difficult to find someone who is familiar with PSC. 

One day at a time is all I can do and work to find the right individuals to help with my medical needs so that I can maintain my health in this journey of mine. 

Not Such a Good Day

Today wasn't a very good day. I was nauseous all day. That is one of the worse feelings in the world right now. It is actually worse than me getting a headache. The other side of things is when constipation hits hard. Everything seems to have a domino effect on my body.

I am trying to plan out a few things to get myself on a regimen that might but it is so hard having a schedule that is totally haywire. I need to sit down and learn how to really plan things better. It feels like I am short on time during the week so I want to think about planning my meals on the weekend for the week. Of course this means doing extra work but I really think that it will help during the week.

Tomorrow is a new day. The goal is to try to keep making it work and not give up. 

My TOTD:
Life is always in motion but are you in motion with it or lagging behind trying to play catch up.