Thursday, June 16, 2011

Just checking

I went to a conference last week. It was three nights out of town, away from family, surrounded by colleagues. Many parts of the conference were great and it was good to get a few days away from the stress of my job.

I thought I had done a good job of packing and found that I had almost everything I needed. I even packed extra undies and had a book, a dvd and some snacks that I never got to. I did forget one thing, my meds. Not to smart. I went three days without my meds.

I have been living with the effects for the last 6 days. Things are just starting to normalize. I could say I chose not to bring them, just checking to see if I still have the same need for the max dose every day but the truth is I just made a mistake.

I do think I am doing better than in the winter. My joint pain has diminished and i am eating pretty much what I want.

Saturday, June 4, 2011

I wish I could be happy

It can be so hard to feel the happiness here.

I am so tired of feeling so alone.

I wish some one here could understand my feelings. I wish that someone here knew the real me and what i feel. I wish someone could understand this illness.

Today I am sad.

Sunday, May 29, 2011

Glutin Free?

I have recently spoken with two women who have attributed their improved health to a gluten free diet. Neither had been diagnosed with coeliac disease.

One has been in remission for over 15 years after nearly losing her colon.

I know it isn't as simple as this post might make it sound. But...

Food for thought.

Sunday, May 15, 2011

Another friend

It seems that every time I turn around I hear of another friend or acquaintance who has UC. It seems to be an illness of geography and my partner, the scientist, believes this is a disease that has been caused by the bacteria in the water that we use on our food as it grows. Once you get it, the bacteria won't go away. You learn to live with it, or not.

What do you think?

Saturday, February 26, 2011

Prepared

The good news for this week is that the physiotherapist I started to see believes that the pain I have in many of my joints, including those where I have recently been told I have arthritis, is caused by a flare of my auto-immune system.

The bad news is that because it is a part of my flare, he is not sure that he can help me much with the pain.

I need someone else to start thinking about UC and me. I need someone who has lots of experience but keeps up with the research and knows what is new and what is coming next. I have the name of another specialist and I am prepared to use it.

Thursday, January 20, 2011

Two steps back

Hmmmm...

I might have to try something different.

The blood and mucus has made an appearance.

I don't want to admit it to anyone in my 3d world. I don't want to change anything. I don't want to live like I had to before when I flared. I don't want anymore enemas.

The thought of enemas makes me feel defeated.

I keep having these conversations with myself.

Wednesday, January 19, 2011

More Itis

I saw a new doctor today. A rheumatologist.

I looked him up on the internet before I went to the appointment and found a mixed review. Some people suggested that he didn't have great people skills and others said they had a long wait to see him.

I didn't experience any of that.

I found him to be quite knowledgeable, engaging and attentive. I didn't wait to see him at all. He was right on time. He asked lots of questions and took his time to complete a full history. He wrote detailed notes and then did a physical exam.

At the end of it all he has diagnosed arthritis and bursitis. I will have to start physio to try to relieve some pain.

I wonder how connected my pain is to my UC. But I seem to think that everything is connected to my UC!

Monday, January 3, 2011

Happy Freakin' New Year!

The holidays were awesome! We traveled, went home to spend time with family, we celebrated, we ate great food and we just did everything together. This year John dealt with his feelings about Christmas early on and was able to let himself have some fun and enjoy the festivities. We spent time with all the kids and the parents and even went shopping together.

Did I mention the food? Oh the food was so good. I have been cooking recipes out of a magazine called Clean Eating. It is not for UC but it is about healthy eating and the food is so good. My sister hosted the family at her house and provided turkey and all the trimmings one night and ham the next.

We had two weeks off with no work! I had two weeks in the summer and was really ready for this time off. I had to go back to work today but it was okay since I had such a good holiday and got some rest.

My colon didn't enjoy the holiday as much. I woke up many nights and days with pain in my back and my abdomen. I have gone back to the suppositories and it has helped a little but I should probably get serious. That means going straight to the enema. It feels like giving in and I don't want to do it. I am resistant.

So far I am managing.