Tuesday, December 15, 2015

Abandoned Fibro Blogs

I just unsubscribed from over a dozen blogs written by fibromyalgia sufferers about their lives with fibromyalgia. All of them have not published a post in over a thousand days. Nothing. Where did they all go?

Several years back, around the time of the great Facebook revolution, I did a brief stint on Twitter. While there, I found a group of fellow fibromites and some of them had blogs. We subscribed to each other's blogs and created our own, (myself included,) exchanging stories and insights about our many challenges. We wrote frequently back then, as there was a lot we had to say.

Maybe it's all been said now. I feel like I'm caught up on all the nuances of this fibro life, yet I still look for news and different perspectives here and there. Once in a great while, I share my own.

This has become clear recently while reviewing my Facebook Memories from years past. I used to post about my pains and health challenges, and sometimes my health victories. Now, I feel I don't want to bore or annoy my Facebook friends with the tedium of my particular collection of health problems. They may not understand what it's like to live like this, but maybe they don't need to.

I have learned that most everyone has their own set of problems. Would I want to read about them all? Wouldn't I start to see certain people as their most frequent complaints? This is not how I want people to see me. I am a person with interests and convictions. I look for opportunities to be more interesting. I am trying to live life.

Hopefully the lost fibro bloggers are all out living their lives and trying not to wallow in their pain. Although I know blogging is a good outlet for dealing with the struggles of living with an invisible illness, I know it can have the unfortunate consequence of limiting one's ability to move beyond that focus.

Today, my advice is to try to forget the bad and focus on the good, the positive. What can you do? What can you enjoy. Be a whole person.

Wednesday, October 21, 2015

A Long, Long Year, and a Poem

It's been a long, and difficult spring and summer for my husband and me. He has Crohn's, as many of you know, and it has turned his life upside down, starting with an intestinal obstruction with micro-perforation that occurred in mid-March, and resulted in an emergency ileostomy that was supposed to be reversed after 3 months. Since then, it's been one complication after another. He is still dealing with the problems we never knew about until all this happened.

However, as he nears his reconnection surgery date, we have been trying to get his weight and strength back up, and one of the things we have been doing is walking every day. Those walks inspired this poem. I hope you enjoy it.

The Same Old Path by Benia Zouras

Friday, October 2, 2015

Monarch Butterflies and a Bunny

Summer's last gasp brought monarch butterflies to our yard only a few days back. Here, I attempted to get some footage of several of them feeding on our New England Asters, and got an unexpected bonus bunny as well.

The winds of Autumn are blowing hard outside now, but at least this video captures some relaxing quiet time. Enjoy.

Wednesday, February 11, 2015

Another Diagnosis

I saw my rheumatologist today. She confirmed that my finger bump is very likely the beginning of arthritis, and, unfortunately, there is no treatment to prevent or slow down the development.

I also went to visit my parents after the appointment, since they live near my doctor's office. My dad has arthritis, further supporting the likelihood that I will suffer the same fate. I looked at his hands. His finger joints have prominent double bumps on them, and he has trouble bending them. It's at least a slow condition to develop. 

I am hoping that if I continue to use and exercise my index finger - instead of adapting by using other fingers - that I can retain joint flexibility longer and maybe prevent the bony growth from obstructing mobility a bit longer. This is all speculation on my part. The doctor talked about a topical treatment to reduce inflammation. I still have plenty of Zostrix with capsaicin that I can use if it gets "angry".

I completely forgot to mention the eye twitch (Myokymia) today, but it's almost becoming a normal part of life now, it's been so many months now.

I am also going to try to wean off the one prescription medication that I take for FMS/CMP: Cyclobenzaprine. She suggested halving the dose for a few months and watching out for worsening pain or sleep, then halving again and watching out again, before finally stopping it. I'm going to see if I can do it, since the dry eyes and dry mouth are starting to really bug me lately, and it may also be aggravating my atrial tachycardia (heart palpitations). I notice the episodes tend to occur right when I wake up.

I'm proud to report that my doctor said she wishes all of her patients were like me. I'm glad I'm managing this all somehow.