To bathe … or not to bathe?

The answer seems fairly obvious. I use to hop out of bed, put the coffee on, jump into the shower, get ready for work and then off I went. I never gave it a second thought.

Today, I don’t hop or jump anywhere, I no longer work, and yes, to bathe or not to bathe requires much thought, consideration and compromise. If you have never heard of or read The Spoon Theory, read it here. Bathing requires many, many spoons for me.

Not only do I have the pain and restrictions from RA, but I also have skin tightening and itching from Scleroderma. Both are aggravated by water! So, it comes down to whether or not I think I’m smelly and dirty – of course I’m not!! I do change my clothes and still wash the obvious areas. I actually have about 2-3 showers/baths a week and I think that I’m doing well. The energy it takes to undress, bathe, sometimes shave, dry, lotion, dress, hair etc is sometimes all I can do in a day. Sad maybe, but I prefer to spend my energy doing things that give me a least a bit of joy.

When I have doctors appointments, yoga , or social get togethers, I bathe. Sometimes I resent feeling that I have to. To have a shower and go to the doctor will wipe me out for the whole day and often longer. The exception to this is if I have a long, hot bath with epsom salts. I crawl up and out of the bath (literally), put Tiger Balm on every joint and recline in my chair with heating pads. It feels great!!


New Page – Project Scleroderma

I have added a new page to this site – Project Scleroderma. This non-profit is very dear to my heart, hence why I became a member of the Project Scleroderma Awareness Committee. Their mission statement is:

“…together we will raise global awareness, encourage support of research, and serve as a platform for patients to voice their stories and champion their cause

I am passionate about supporting this group as one of their main goals is to simply raise awareness of Scleroderma. When I was first diagnosed, I had never heard of the disease. In the years that have followed, I am continually shocked at how little is known; both in general, and also by the medical community. I would be grateful if you would take the time to visit my new page, and then watch the short videos or visit the Project Scleroderma website

I love it! 

Technical Difficulties!

Hello there! Wish I could say that I’ve been away somewhere hot and sunny and that is why I haven’t posted for so long. Not so! I have been having ‘technical difficulties’ with the web server that hosts this site. Talk about frustration and craziness at its possible worst!  Today is the longest time I’ve had access to my site without having it stop responding! Usually a minute or two, just enough time to get in, and then *poof*, no response – couldn’t even see my site anymore! Then it was inaccessible to me for hours and then I could get in again for another minute or two!! Of course the hosting provider would say it wasn’t from their end. I would say, ‘well everything else is working fine here, I can access internet, any other site no problem …etc, etc.’ Anyways … I just kept trying, sending emails back and forth with them, let it rest for a while and today it’s working! Who knows?

I want this blog to be very low maintenance as my energy levels are so low, especially in winter, that I can’t/won’t keep trying to problem solve. I want to get on the site, spout some words of wisdom, or complaint or just general whininess!! Is that asking too much?  I have enough technical difficulties with myself to add this to it as well.

I’ve removed some of the information that was on the side bar until I’ve figured out what was causing the problem. I guess I have to do this myself as the provider has no idea, just keep asking for my ip address!?! OK! Enough about this, from tomorrow on I will resume my blogging as I intended. Thank you one and all. (If anyone is there …)


p.s. If anyone has sent email or comments, I can’t access that right now either! 


Yoga class

”Yoga teaches us to cure what need not be endured and endure what cannot be cured” — B.K.S. Iyengar, founder of Iyengar Yoga, and considered one of the foremost yoga teachers in the world.

YogaI went to my first yoga class in ages this morning. I have to say that it felt good. The class was advertised as:

A gentle yoga practice for those who have persistent health concerns such as chronic pain, arthritis, depression, MS or are recovering from illness or injury.

“Hey, I fit the bill perfectly!”

There were 2 choices, a chair class or a mat class – I chose the mat class thinking it would be more ‘yoga like’. My main concerns were flexibility of my joints and the fact that my hands and wrists don’t bend very much and I can’t support myself on them. Both of my worries quickly dissipated as I realized there were props and adaptations for everything.

Today we worked from our feet to knees; we will move up the body each class. It feels so good to move my body in that way and not have people look strangly at you because of how you look or move. I remember one yoga class I tried (gentle restorative), and I was rolling around on the floor trying to propel myself enough to get up! It’s amazing what you can’t do without the use of your hands and wrists, until you learn to adapt. Anyways, the other students were just looking at me like I had pooped my pants until the instructor came over and I explained my problem. Needless to say, I have been hesitant to join another yoga group. I really felt I would get so much more out of a class designed for people with limitations and then I found this one! Oh, and guess what? Not one person was wearing yoga pants on top of their thong! I did not see one floss-wedged crack!

The benefits of exercise, especially for those of us with limited mobility, chronic pain etc far outweigh the drawbacks. I would encourage anyone who is not doing something to keep looking until you find something that fits for you. I feel better today and know that I will feel ‘betterer and betterer’ with each class.

– Namaste

Lift Me Up

If you’ve never heard, “Lift Me Up” by Christina Aguilera, I think it’s worth a listen. 

Lift chairI’m in LOVE with my lift chair. I spend anywhere from 2-10 hours in it a day so it’s probably good I’m so fond of it! I couldn’t have afforded this chair without the help of family and friends – B&T, mom, D – thank you so much, I LOVE you guys!!
So this is a new lift chair I just got this month. I had a used chair before that I used for about 2 years. It was okay but I didn’t know what I didn’t know. It was a ‘petite’ chair so my lower legs and ankles hung over the end. At the beginning this was fine but as my ankle joints became worse, the weight of them hanging over the footrest was unbearable. It only had a single motor; meaning that when the footrest came up, the back went down. They moved together.
My new chair, which I’ve named Blue, is a large model with a footrest extension. Blue is also a dual motored beauty, meaning that the back and the footrest can move independently of each other! Makes a huge difference! Blue has 4 preprogrammed positions: zero gravity, TV, sit and sleep. AND … I can program my own favoured positions as well! Voice recognition is just around the corner!!  “”Blue, I think it’s nap time”, “Blue, Coronation Street is on!”, “Blue, hurry up! I have to go to the bathroom!!” Hahahahaha.

Unproductive Weekend

I felt shitty all weekend; worse than usual. Most of my joints were sore at some point, sometimes all at once. I seem to be having more troubling swallowing, a common symptom of Scleroderma. If it gets much worse I guess I’ll have to go for another Gastro endoscopy! Yuck!! My eyes have also been very dry, thank God for eye drops! I should buy shares in one of the companies! I had my Methotrexate shot (25mg) on Sunday evening so it’s common for me to feel crappy for a few days. Wednesdays (sometimes lasts until Thursday) tend to be my best days and then it starts to go downhill again. One big, happy cycle.   Thank God for my lift chair! I am in love with this chair. Will write about my lift chair very soon!