Tuesday, May 19, 2015

It's the Brain Foggiest

You know it's a high brain fog/ exhausted day when you stand outside your front door for five minutes trying to use the key fob that unlocks your car to unlock your front door. At least I was hitting the unlock button I guess.... Hope this makes you all laugh, cause I am.

Tuesday, May 5, 2015

Oils are no Substitute for Actual Medicine

Sorry for not making a post yesterday. It was my mom's birthday and I never really got the chance to sit down and write so I will post the two memes that I ended up posting yesterday and the meme that is for today!

He was so cute I had to post two of him!
Okay, now for today's post I wanted to talk a little bit about something that actually happened to a friend of mine that has vasculitis that attacked her kidneys resulting in her needing a new one. She started a facebook page to help her achieve this goal and is using it to document her journey through dialysis and on.

Naturally, a public facebook page is going to get all sorts of people that comment on it, but one person left me floored by their response to one of her posts. They actually told her that they had some oils that would take care of her. Now, I don't know if they were just saying that the oils might help alleviate some pain or if they were actually telling her that instead of a new kidney she should just take some Frankincense.

The sad thing is, while a healthy person might that a suggestion that an oil would work as a cure for us is so silly that no one would do it, but you would be wrong about that. I know many people with chronic illnesses post about their experiences, I know I have posted about my experiences with having people tell me about the so called "miracle cures" they know of. These suggestions are so common there's a square for it on the chronic illness BINGO card.

While I understand that the people that make such suggestions are coming from a place of love and aren't trying to be terrible, the truth of the matter is, they are. When you suggest alternative treatments to a person when they aren't asking for or about them you are derailing what the person is saying about their medical treatment.

When people give me these suggestions I tend to hear one of two things. This,
                        "I am not a medical doctor, nor have I any experience in or with the medical field aside from going in sometimes when I have a cold but I know better than you and a doctor because I scraped my knee once and this stuff worked on it so it can obviously work for everything else out there 100% of the time."


                         "I am not a medical doctor, nor have I any experience in or with the medical field aside from going in sometimes when I have a cold but I know better than you or a doctor because I believe in all sorts of conspiracy theories including the idea that medical science is actually a business and they want you to have to keep paying them for services. BIGPHARMABIGPHARMABIGPHARMA!"

But at least the first one is coming from a place of love: it worked for them, or at least they thought it worked for them, so it will work for you too. I'm not sure where the other one is coming from, maybe love that took a detour on the fear bus into conspiracy theory town.

The problem is, these statements do harm. They work to try and convince people that they don't have to listen to their doctors. If you have any sort of chronic illness it can become tiresome to take all the medications and do what you need to do to stay healthy; so depending on when someone makes these sorts of suggestions to you it can be really tempting to try it. You are telling us that we should take our hope away from what has been proven to work and place it in an unverified, untested long shot. You are also essentially telling us that we don't know what we're talking about when it comes to our illness and that you, who have no experience with it and more than likely know next to nothing about it, know better than we do. Seriously. Just stop making these suggestions unless you have specifically been asked about some supplement!

The incidence with my friend, though, that lead to the creation of today's Vasculitis Awareness Meme!

Sunday, May 3, 2015

Vasculitis: The Life, The Legacy, And So Much Netflix Watching I Could Barf

Seriously, I think Patrick is on to something here.....

So, today is day three of Vasculitis Awareness Month and I wanted to maybe let you in on how the typical day for me goes. 

For starters, I wake up. Most people do this activity, so, so far so good! Not much different from a normal person. It always takes me anywhere from a few minutes to a half hour to actually make it to the "getting out of bed" stage of my day. I know a lot of people are this way, but not all, so I'm going to count this as another tick in the "still normal" box.

Now here's where things get a little iffy. Some days I am super stiff so getting dressed poses some issues. I know a lot of people with vasculitis that take these days to stay in their pajamas but not me. Oh no. I'm too stubborn for that; besides, I might need to go outside and nobody wants to see me in my pajamas. Nobody.

Stiff days means that I gravitate towards shoes that I can simply slide on so I don't have to do as much bending. It also means that I tend towards wearing whatever clothes are in easy reach. This has lead to some interesting wardrobe choices on my part.

Before I can face the day, I have some pills to take and inhalers to puff. I try to remember to take a pain pill (even though they don't do much but soften the pain a little bit) because if I don't the constant pain will trundle up higher and higher until I can no longer ignore it.

When I finally struggle out of my bedroom I have to take a rest for a minute so that I can get up and feed my dogs. Fatigue is one of my biggest problems, so sometimes tasks that should be easy can take me forever.

What they don't tell you about fatigue is, it's more than just being physically tired. It also encompasses mental and emotional tiredness as well. Just know that my klutz factor has been ramped up to 800. I'm not joking. In the last two days I've managed to shut my arm in a sliding glass door (the whole thing, not just a little pinch of the skin). If I had been in a horror movie that door would have chopped through my forearm and I would be typing this to you one handed. Then, I smacked the same arm, in about the same part, on the door knob of a restaurant bathroom and now I have a lump.

I trip a lot, and sometimes when I'm having a conversation with someone my mind just stops.The words just run out and I can no longer brain. Much of my communication has devolved into grunts, stutters, and pointing at "the thing". I also heavily rely on whomever it is that I'm talking with to have superior detective skills.

Most of the day this isn't a problem because everyone else in my house works and I'm the only one home. Makes communication easy, but there are other struggles that arise because no one else is around to check out what I'm doing.

Many a soup can has been lost because I read the word Tomato. Double checked and could swear it still said Tomato; but then upon opening the can discovered that it was, in fact, Chicken Noodle. By this time the label has already changed back to say Chicken Noodle because labels are tricksy things and they don't always say what you thought they did. There are also many cases where I put something in the microwave leave the kitchen and then have a freak out because I left a metal fork or something on the plate (thankfully, so far none of these freak outs have been for an actual reason as the fork is smart enough to not be on the plate when I open the door). There was also that time I put my pizza rolls in the microwave for ten minutes because I swear that's what the directions said and ended up with tiny little pizza briquets. It was a sad day indeed.

When the weather's nice enough I like to sit outside with my pups for at least 20 minutes. This only happens if I can find shade to sit in. No shade = no sit. I burn just like my poor dead pizza rolls of not so long ago.

I try to read on the days I'm braining enough to understand what it is telling me on the pages. Sometimes I like to play those new fangled computer games.  My life seems so much better when I can create a family in The Sims and become their sometimes generous sometimes terrible god.

I have also attempted to take up many different types of crafts but the only one that seems to have stuck is making scarves with a loom. Crocheting and I chose to see other people. I also like to talk with other people that have vasculitis online because the internet is amazing and it's always nice to talk to people that get it!

For those days that I just can't make it out of my chair, though, I have Netflix. Or maybe I should say that Netflix has me. I  have seen so many things there, some of them great, some of them good, many of them leave me wanting for those precious moments of my life back.

Lately, I have taken it upon myself to start going for a walk around my block at least once a day. I don't like being stationary and long to be able to go out to work, but for now a short jaunt will have to suffice. Eventually I'm hoping to extend these walks further, but for now it's good.

On the days that I'm feeling particularly brave I will head out to a store to walk around. Unfortunately, I may get followed by loss prevention because I dress like a hobo.

Many of my fellow vascies take naps during the day, but I try not to so I can sleep better at night.

Written out like this it seems like I do hardly anything. I'm sure I've missed a lot. This is a very brief summary. It also doesn't include the days of doctor's and clinic appointments which are an entirely different species of animal.

I also don't think I've done a very good job of showing what the fatigue and brain fog is like, but hopefully you get the idea.

Saturday, May 2, 2015

A Summary of Sorts

If you're reading my blog you're probably aware that what I have is a disease where my immune system has mistaken my blood vessels as foreign invaders in my body. You probably also know that it sucks.

Vasculitis is a group of diseases that all involve the immune system doing this. In some cases the immune system tends to decide that it has a favorite type of blood vessel that it likes to attack. Sometimes these are the large arteries and in other diseases the immune system decides to go for the smallest capillaries. The type that I have sits right in the middle and goes for everything from the capillaries up to the small arteries. So, it won't go for things like my aorta, but it will go for the artery that attaches to my kidneys. It will also go for all the smaller vessels down to the capillaries.

I was never really given a specific diagnosis; they know it's vasculitis, and they know it's one of the three that are ANCA associated, but because I didn't have a biopsy they can't get anymore specific than that. .My doctors and I have decided to lean more towards Granulomatosis with Polyangiitis because that's more in line with the symptoms I've shown, but the ANCA I show is the one that leans more towards Microscopic Polyangiitis.

Hey, in one post you've now pretty much caught up the main summary of my blog! Congratulations!

Friday, May 1, 2015

Awareness Month

May is a lot of things. It's warm, school children are getting excited as the summer vacation gets closer, Mother's Day (at least in the US), The Avenger's: Age of Ultron is finally in theaters, allergies are running rampant, and of course Lupus Awareness Month.

But May is also awareness month for a less known relative of Lupus.

Do I really have to ask you all to guess? Cause the answer is going to appear in a meme picture I put together.

I'll wait while you save it..... Seriously, don't stop. Save the picture. I mean, sharing this post would work too I guess but I can't guarantee that the picture will show up big and bold. 

 I'll share other meme's I make throughout the month here and you are welcome, nay, encouraged to share them! After all, that's what an awareness month is about, isn't it? You don't even have to link back to my blog if you don't want to. You don't even have to have Vasculitis to share these memes either, it's not like there's a button somewhere that checks to see if you have it. If there were I would try to disable it even though I probably wouldn't be successful at it because I am not as internet savvy as I pretend to be.

Seriously, I would like to see these memes shared as far and wide as possible! The more people that are aware of Vasculitis the better it is for us!