Is Somnacontortion A Word?

contortion-2-resizedSomnambulance. Some people walk in their sleep. Rheumatoid Arthritis Guy has never had this problem, although it seems like he’s started doing something else in his sleep for which there is still no name. I’ve started acting like a contortionist while I sleep. When I wake up, the first thought on my mind is often “What pretzel have you wrapped yourself up in now?”

Of course, it is my rheumatoid arthritis that is twisting me into these fun shapes. It seems to be having a lot of fun on my hands and feet. I continue to learn just how many different directions a group of five fingers can point in. My wrists continue to sound like crunchy cellophane in the morning. Really thick crunchy cellophane.

(Speaking of pretzels, does anyone remember those large shopping mall pretzels that were both illuminated and warmed up with a huge heating light? Some of them had rock crystals so large that if they were slightly polished, they could be mounted on a ring. What was up with that? And while I am at the mall, I can’t forget those horrible outfits that the people who worked at Hot Dog on a Stick had to wear.)

So I guess it’s time to once again take out my lovely forearm wrist braces, that actually prevent a lot of this twisting and turning that takes place during the night. I also have a pair of ulnar deviation gloves. (That’s a mouthful.) They have a strap that wraps around each individual finger. They do a really good job…sometimes so much so that I can only wear them for an hour. You see, when my hands are pulled back into their “correct” position, they are no longer in their “natural” position…and that can really hurt.

Now if I could only do a one-armed handstand!

Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!

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Pollyanna Penguin

Pollyanna Penguin

Real Profiles of Rheumatoid Arthritis
Real Profile Pollyanna Penguin
Photos © Pollyanna Penguin

Name?

Pollyanna Penguin a.k.a. Anne but prefer Penguin (or Polly occasionally!)

Age?

41

Location?

Nearest city is Norwich, Norfolk, UK, although I live in a small town outside Norwich.

How long have you lived with RA?

Good question. Diagnosed in 2007 but I’m sure I’ve lived with it for longer than that!

What advice would you give to someone who has just been diagnosed with RA?

1. Read up everything you can about it, but don’t assume that everything you read applies to you. Everybody’s experience of RA is different.

2. Don’t be afraid to try the drugs because of possible side effects. For a lot of people they work and work well; those are the people you tend not to hear from because they’re busy getting on with their lives!

3. Educate your family and friends about it – they can’t read your mind and they won’t know what you’re going through. Don’t assume they aught to just pick it up by telepathy. (It’s very easy to assume that, especially with people you’re really close to.)

Do you use any mobility aids?

I have a cane in the car but almost never need to use it these days.

How has living with RA helped to improve your life?

It’s made me make the most of the good days and it’s also made me pace myself, which means I have forced myself not to be a complete workaholic any longer. It also got me an excellent free trip to Barcelona! (See www.mydayforRA.com)

Do you have any visible signs of RA?

Only if you look really, really carefully! Slightly off kilter toes but I’ve seen worse on people who haven’t got RA, and slightly bent index fingers.

Can you please describe some of your favorite coping strategies for living with RA?

Cuddling the cats, ranting at my hubby, cuddling my hubby (often post rant!), living one day at a time, making the most of the good days, focusing on the positives, writing my blog (which has really helped me to focus on the positives … as well as occasionally rant about the negatives)

Can you please describe your current medical (traditional and alternative) treatments?

Methotrexate 15mg, hydroxychloroquine, Arcoxia (an anti-inflammatory), folic acid (to counteract mtx side effects, presumably works as I don’t have any side effects!). I also take 5-HTP (a herbal remedy that’s supposed to balance seratonin and help with mood swings and sleep) to help counteract the fibromyalgia I also have.

Is there anything else about yourself that you would like to share?

I am very happily married (inspite of above mentioned rants) with three cats: Enormous Cat, Middle Sized Cat and Tiny Cat. The latter is more usually known as Nollie (her official name) or Noodle (because she has the brains of a noodle, or because she looks like a noodle, although based on the latter I have started calling her Ravioli, as she’s ‘filling out’ rather too much). I am slightly cat obsessed – guess you guessed that. I also love doing embroidery and other crafts when hands allow, and going for country walks when feet allow, delving into natural history (especialy entomology) and photography (especially of entomology, but also landscapes, trees, stuff generally). I work full time but not as full as I used to!

Pollyanna blogs regularly at Pollyanna Penguin’s RA Blog.

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Milk Bottles

milk bottlesI think most of us are familiar with the milk bottle carnival game. A number of glass milk bottles are stacked in a pyramid, and players must knock all of the bottles of the platform with the throw of one (or three?) baseballs. Some people claim that this game can be easily rigged, by making one bottle heavier than the others. Either way, this game is the source of much amusement and empty pockets, as players try repeatedly to clear the platform of milk bottles. (And once they finally do, they are often surprised to find out that their prize is not one of the huge stuffed animals hanging overhead, but it instead a rinky-dink prize from under the counter that must be “traded up” to a larger prize.)

Looking back at 2009, it feels like my life could easily be represented by this stack of jars. In my case, instead of a baseball knocking all of them clear off the platform, it was my rheumatoid arthritis that did all of the work. As expected, the prize was minimal to none. And unlike the carnivals or state fairs where the area below the platforms is well padded, my jars fell straight onto the concrete ground. To say that some of them shattered into tiny little pieces is an understatement.

My first step forward, after months (some might say years) of continuing to step on the sharp pieces of glass, was to finally survey the damage around me, and to admit that it needed to be cleaned up. Looking back at the past year, I realized that this was a critical moment during my journey with rheumatoid arthritis. Even though I still had a lot of recovery to accomplish, I had at least turned my sights around from the fearful unknown to the positive present…and while I did not know it at the time, this counted for a lot.

I started deciding which milk bottles were most important to start piecing back together, and ended up with “physical health” and “emotional health”. This was not easy – sometimes the total number of hours that I dedicated on both of these issues totaled up to more than a full time job – but it was possible. My physical therapy sessions have been reduced from 3x a week to 1x a week maintenance mode. My therapy sessions with my psychologist have been reduced from 1x a week to an on-call basis. This effort took months, and many times it was hard to see some of the results, but looking back I am glad I stuck with prioritizing my physical and emotional recovery above all else.

After I started gluing the pieces back together, I often assumed that a lot of the cracks in the glass would be permanent. I am happy to find out, however, that some of the scars DO heal.

The milk bottle labeled “personal finances” has still not been fixed, but now that I’ve worked on some other milk bottles, I can dedicate a large part of this year to working on this next project. I only recently started surveying the damage, but as the previous examples showed me, this is a critical step for moving forward. While my current income still does not cover all of the expenses, it is much better than where I was last year, when my income for many months was zero. I am currently working on various leads at the moment that will hopefully get me closer to where I want to be. I no longer dream of riches. I would be more than happy with a comfortable income that covers my living expenses, my medical expenses, and a little allowance on the side. I have no doubt that I will soon be there.

And though I did not want to admit it, the milk bottle labeled “marriage”, which continued to appear to remain so strong, started showing some cracks as well. (Luckily, this was one milk bottle that did not shatter into a million little pieces.) A few months ago we recognized this situation, and started putting the effort that was required to not only stop the cracks, but to heal the scars as well. (Including, but not limited to, couples counseling.)

2009 was the year of fixing two milk jars: physical health and emotional health. When this new started a few weeks ago, I decided that 2010 was going to be the year of fixing another two milk jars: personal finances and marriage. After I get all of my milk bottles back into place, I am sure that they will be even stronger than they were before, so that they are not so easily knocked over once again in the future.

In order to fix these remaining milk jars this coming year, I will need to spend less time online. No, Rheumatoid Arthritis Guy won’t be going away completely, but I also won’t be able to continue making daily appearances as I have done in the past. While it’s great to be able to feel like a superhero here on my blog, it’s even more wonderful to feel like a superhero over in my daily life, out in the real world.

Plus, I hope to – one day – finally get that really big stuffed animal that is hanging overhead!

Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!

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Sunday Break

Because there is no such thing as taking too many breaks!

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EkekoToday (January 24) is Alasitas, or festival of the Ekeko. Don’t know what an Ekeko is?

“In the mythology and folklore of the Aymara people of the Altiplano, a high plateau region which spans parts of Bolivia, Chile, Ecuador, Peru, and Argentina, Ekeko is the god of abundance. Its origin predates the arrival of the Spanish people to America, as one of the gods of Andean culture, but its current form was born in La Paz, Bolivia. Antonio Díaz Villamil included the Ekeko’s legend in his work “Leyendas de mi tierra”. Ekeko is depicted as a man with a mustache wearing traditional Andean clothes (especially the poncho) and completely loaded with bags and baskets with grain and food, (compare with the cornucopia of some Greco-Roman deities), household objects, and currency bills, and basically anything that a person is thought to want / need to have a comfortable and prosperous life ; he is commonly found as a little statue to be put in some place of the house, preferably a comfortable one, but also as an amulet holding from key rings; modern statues of the god include a circular opening in his mouth to place there a cigarette (better if lit) for Ekeko’s pleasure. Latest tradition has the ekeko “smoke” a lit cigarette (hence the rounded mouth) once a year to ensure a full year of prosperity.”

Read More: http://en.wikipedia.org/wiki/Ekeko

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Since the Dallas Cowboys are out of the playoffs, I don’t know who to cheer for now. I think I’ll hope for an underdog Superbowl: New York Jets versus Minnesota Vikings.

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I’ve been having a lot of Hobbit-esque adventure dreams this past week. (Yes, I am reading the book.) It’s been good to have something other than my RA get to my sleep dreams!

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Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!

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