Thursday, 24 April 2014

Fast Forward Fears

I try to stay very active in the community of fellow autoimmune disease owners. I'm actually part of a group on Facebook (My Immune System Hates Me) for young people who own autoimmune diseases. I really love being a part of it: Even though I'm not very active on it, I've really gotten to know everyone and I really care about them. My heart breaks for them, too. As just the other day, my heart was torn in two for one. Though I won't say who for privacy reasons, this person talked about graduating university just the previous year with hopes of going on to a bright future. However, she is now struggling a lot with her health and it's so hard for her to get by day to day.

It's amazing how fast your life can flip. Scratch that, it's scary how fast your life can flip. Especially when you're only so young. Life doesn't get to be put on pause until you can feel better- time keeps ticking and dreams collect dust. I think it's funny how our brains aren't truly developed until age 25, but we are forced to make very important decisions that affect the direction of our life as early as age 12! Around the time you turn 16, all of a sudden your life is out on fast forward- and from then on, there's no going back. I admit it's a very exciting time but it's so exhausting. Fatigue has cost me a fair few opportunities I will never get again. It cost me grades that could've been perfect but are now above average (I know, big difference). It cost me friends and holidays and lots of sleep as I worry what's going to happen next.

But as much as it breaks my heart to hear about what others have lost and as much as it stresses me to think of all the potiental loss I may face in the future, I find comfort in knowing someone else understands. It sounds horrible, but it's true. There is comfort in not being alone in your situation, it your fears and in your hopes. I don't have advice for this situation- it seems to be a no win most of the time. Sometimes to make it you're going to burn yourself out. I don't encourage you to, I'm just saying it happens. Sometimes you're not going to make it. Don't feel that's the end of everything: When you've hit your lowest point the only way you can go is up. But know that in whatever happens, there is someone who cares, who's heart breaks at your lows and who rejoices in your highs.

Saturday, 19 April 2014

My Absence of Sitting

I haven't been very active on the blog lately, even my Twitter and Facebook have suffered. I'm terribly sorry about that: I've been here the whole time, I just haven't been posting. I've even been writing, but I just haven't posted. I've felt immensely guilty about not posting either, but as of recently  I've found myself busy and wrapped up in other things. Like sleeping. Or eating.

The past week I was invited to work on a project that has required me to sit on the floor and paint. I like the painting part but not so much sitting on the floor to do it. I'm very much like a baby because I can't sit up by myself so I've had to hold myself with one arm or sit in a way that kills my legs. I've been coming home very sore. But even through that, I've been taking very long walks afterward. I know how important it is that I keep moving, so after a day of sitting uncomfortably a walk seems as though it would be smart. Unfortunately after I get back home I crash. It's been a miracle that I haven't been falling asleep before five o'clock.

So, please excuse my absence! I can't even promise I'll be back soon- I really need time to recover and even a little time away from the blog.

Sunday, 6 April 2014

Psoriasis is so Easy to Treat

Lately, I've spent a lot of time reading articles online. One of my favourite places is All Women Stalk: I like the beauty and hair advice, and I really like the name. Last night I was on All Women Stalk and one article was very interesting to me: 7 Skin Problems That Are So Easy to Treat. I expected this article would talk about things like dry skin, but I was proved very wrong. One of the problems that are so easy to treat is psoriasis. Psoriasis?! Easy to treat?! Over my dead body it's easy to treat.

The article states that the number six easiest skin problem to treat is psoriasis. This is what the website says:

"You might not realize how common psoriasis is. In fact, it’s one of the most common skin conditions that affect adults. It produces red, scaly, dry patches of skin and can appear most anywhere on the body. There are several types of psoriasis, and some require nothing more than taking a prescription pill. As long as you remember to take it every day, there’s really no simpler way to treat a skin condition."

No, it's not. It's not easy to treat at all. Psoriasis is an autoimmune condition in which T cells cause the skin to become irritated and inflamed and skin cells to go through their cycle that usually takes 30 days in only 3, causing the redness and scales. Yes, it can be controlled with prescription pills- often low dose chemo and other immunosuppressants. It is not the simple matter of a pill though, these medications are very serious and side effects can be unpleasant. Though, other medications can be used: if creams and pills don't work, there are things called biologics you can take. They're injections, often given by the person themselves anywhere from every two weeks to twice a week. In addition to skin psoriasis, one can also get nail psoriasis or psoriatic arthritis, a debilitating, autoimmune arthritis. 

This article infuriates me. Not because of how inaccurate it is. Not because I have psoriatic arthritis and nails. But because my beautiful mum has psoriasis. It covers a good portion of her body, and there are many articles of clothing she will not wear because it would show the affected skin. Do you know how painful it is? I can only imagine what it is for her, because it is so painful to watch. I hate to watch her suffer, often silently. To read an article about how easy it is to clear psoriasis is so upsetting. If it's so easy, why is my mum still suffering? 



Let's not take this. These conditions, especially autoimmune, are not easy to treat as many insist they are. This is just one example of a society that calls autoimmune arthritis, lupus, fibromyalgia, irritable bowel disease, Lyme disease and hundreds of other diseases easy to treat, or even fake. Please, let's tell All Women Stalk how horrible this article is. I've listed many ways to get in touch with them, if you would please help. If you cannot do that, please share this article. There are many people with psoriaisis. Let's give this often silent disease a voice.




The All Women Stalk Twitter: @AllWomenStalk

The All Women Stalk Facebook: 
https://www.facebook.com/Allwomenstalk?ref=ts&fref=ts

Don't ignore this issue. Please share.







Thursday, 3 April 2014

Shoe Rules

I love shoes. Shoes can really dress up or down and outfit, just the way you want! Having arthritis, or just chronic pain, can make finding good shoes really difficult. It's taken years, but I've finally found ways of coping. Years of wearing ugly, clunky shoes that are so comfortable or pretty shoes that hurt like no tomorrow have gave way to finding great shoes. It just takes a little effort, but here are my shoe rules.

1. If you are able to, invest in your work and dress shoes. This is most important for women, as the two types of shoes can often be one of the same. Heels may not be possible for everyone, but some women actually can: They just need a very thick, small heel and a well made shoe. Consider saving for a quality pair of shoes that will last, give your feet support and most importantly give you confidence.

2. Get proper shoe equipment. Get arches if your doctor recommends them, especially if your feet are flat. You don't need to spend a fortune on getting them custom made: I've found them in regular stores and some are just as good as the custom made ones. In fact, my doctor thought mine were custom made! In reality, I bought them for nearly nothing.

3. If your heels ache, get heel cups. They're a bit like little trampolines for your feet. I highly recommend them- my heels ache a great deal, and throb when I wake up. But lately with my heel cups, they've been much better. They too can be found cheaply, in fact you probably could find directions on how to make your own.

4. Almost Any shoe can be made comfy if you have the right equipment. I can wear ballet flats by putting arch supports and heel cups in them. It may be difficult in some shoes, but I've found sticking down arches and cups with double sided tape helps a tremendous amount. You can also stick cushions inside too.

5. If you have nice shoes that has no supports or way of keeping supports in them, try to plan when you want to wear them. Try and make it on a good day, but I know that's not predictable. Make sure you take your pain medicines, and if you have a lot of walking to do (like if you take the train), bring a spare pair to change into. Having a spare (preferably light pair) will also be good incase you flare during the day and need comfy shoes.

6. Arches hurt to break in, but you don't have to completely suffer. Stick small pads on them, it makes it a little more bare able! Don't try and wear them the entire day at first: try for two hours a day, and try longer as it goes by. My arches hurt so much for the first week, but it was well worth it: any shoe I put on with my arches are like slippers.

7. Break in shoes quicker! Dip them in water, put on a pair or two of thick socks and then the wet shoes. Use a hair dryer to dry your shoes as you wear them!