Thursday, July 22, 2010

Thinking Things Through

I've been doing lots of thinking lately about what direction to take my blogs and how I can improve on making them more exciting, interesting and more importantly; informative. I've been spending time researching some great topics to discuss and constructing and planning outlines, so that they have some sense of direction and structure because I want these blogs to be the best that I can possibly make them and I have big plans for them. Regarding this blog, I promise that it will pick up and become more interesting soon. I have stacks of stuff to share with you but it is going to take time. I also have some exciting news to share with you, but you'll just have to keep reading to find out. Ha! I definitely want to guide this blog in a new direction, and I'm pretty excited about what I have planned.


Some of you may know that along with this blog, I also started a second one called The Endometriosis Diaries, which is now temporarily unavailable due to it being under construction. I found myself up late the other night trying to change the template as I was unhappy with the current layout and design. So there I was wrestling with different templates, widgets and html's that refused to cooperate, thinking, why am I doing this? Writing and maintaining one blog is an enormous challenge on its own when you are chronically ill and here I am trying to write two! I thought about how I could make things easier on myself and considered making the blog apart of this one. I even contemplated deleting it for a while. Although, the whole reason why I created it in the first place was because I wanted a separate blog to write about the challenges many women face with endometriosis. The disease is hard enough to deal with on its own, let alone adding arthritis and fibromyalgia to the mix, so I thought it deserved its own page. A page that women can go to and feel encouraged, heard, supported and not so alone.

 

After much thought, I kept coming back to the question why am I doing this? Why? Simply because I am passionate about raising awareness and encouraging the sick. I want to help the hurting and I want to make a difference by sharing my experience. So the blog is here to stay and I've come up with a plan to make things easier on myself and I've finally found a template that I'm happy with! I'm slowly working on putting it back together, so I'll have it up and running for you again soon for those that are interested. I'll announce it when construction is complete.

Along with the blog thinking, I've also been reflecting on the recent trial of arava. Now that I've been off it for over a week I can really judge it's effectiveness. Although I said that it didn't work to my expectations, or my rheumatologist's for that matter, I am really missing it. The pain is far worse without it now. I guess my rheumatologist was right when she said "you will never realise the full impact a drug has until you come off it." Joint stiffness has returned, although side effects are slowly subsiding which is great. You can never have it both ways with drugs!

In other news, I started another drug lyrica on Monday. Here I go again. So far I haven't had any unbearable side effects but I have been waking up dizzy and feeling very weird which does get better as the day goes on. I'm adjusting to the feeling quickly though, as I went through the same thing with methotrexate and that feeling was much worse! So far it hasn't done anything for my pain and my doctors have high expectations for this drug. Time will tell if this drug will work for me though. One thing I know that definitely hasn't worked is the cortisone cream prescribed for the eczema around my eyes and on my eyelids. I'm very frustrated and disappointed. I'm beginning to wonder if it's even eczema at all now. I've had eczema on my eyes before and it was nothing like this. It also cleared up within three days of cortisone use. The skin on my eyelids has now become all scaly like and is peeling off (grose, I know). My mouth is also is as dry as the Sahara desert. I can't quench my thirst! The last time I saw my rheumatologist, she was going to run tests for weight loss and one disease that apparently causes weight loss is coeliac disease which was going to be investigated as she believes that there is a link between coeliac and rheumatoid arthritis. She also questioned if I was thirsty which I thought was strange, but nothing has since been mentioned. I've also still lost my appetite which is very unusual for me so I will be sure to mention these problems next time I see her as they are certainly not disappearing. I know my body well enough to know that there is something weird going on. The question is what? Been having a fair bit of trouble with back pain and fatigue lately too so can't wait for my appointment in a few weeks time!

On a positive note, my acne is slowly clearing up with the use of a topical antibiotic. YAY! So relieved. My headaches caused by arava have completely disappeared and the nausea is much easier to cope with now. I'm coping well considering everything though and am feeling confident and hopeful for yet another drug trial.

Thanks for reading














3 comments:

phylor said...

I wonder if your dry mouth/thirst might be linked to sjorens syndrome, something a lot of folks with fibro and arthritis have. Here's a link to a defination, symptoms, etc. http://www.medicinenet.com/sjogrens_syndrome/article.htm

Came to your blog thru chronicbabe.com's bloggers forum. Great posts; I've signed up for email notification.

Good luck with your health issues in 2011! Hope it's a good year for you.

phylor said...

PS: I'm always trying to reinvent my blog. Life has taken it in directions I hadn't intended. But, perhaps that's what's so neat about blogs; they can morph, shape shift, and reinvent themselves.

Emily Ruth said...

I did come across that when I was doing research about the symptoms and it really made me wonder if I had it, but I've just found out that I'm still low in Vitamin D despite taking supplements for a year. So that's what's causing most of the symptoms. Amazing!

Thanks so much, I'm glad your enjoying them. Yes, that's what I love about blogs. Blogging is just the greatest!

Thanks for your comments :) X

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