Things That Really Grind My Gears

I may have already shared this picture during awareness month, but it works for this post.

When I shared the above meme in some of the vasculitis groups some people commented that we need to give the doctors a break. They study so many other things that the less than a day on average devoted to rare diseases is really all they can fit in.

I understand that. Being a recent college graduate (Bachelor's level, not post graduate level) I get that there is a lot of stuff that goes into being a student and there is no possible way for a person to learn everything about every disease out there. So then why is it that doctors have to fake that they do?

I don't know how many times, how many patient stories I've heard that boil down to: My doctor had no idea about vasculitis but decided to fake it. Or the ever present: My doctor had no idea about vasculitis so they refused to answer any questions about it and instead left me to the less than capable hands of doctor google to try and figure out what to expect. These situations are not right, they should not be happening!

Don't even get me started on the doctors that decide to pretend to be experts just so they can dismiss your symptoms as things that are unconnected to your disease

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Everyone and their dog seems to know the amount of work that goes into being a doctor, everyone knows that doctors are also human (unless you're going to some futuristic robot doctor) and that there are going to be things they have no idea about. I think that knowing these things means that most people aren't going to have their brains melt down if a doctor says that they aren't sure about this specific disease so they will have to look some things up or will find an expert to send you to. Or maybe a lot of people will have a brain melt down if this happens because doctors aren't known for doing this.

Is it really that much to ask for doctors that are willing to be seen as not an expert in everything that comes to medicine?

I know there are doctors that don't do these things and they are to be treasured. My gp was like this. He only had a vague idea about vasculitis and that it was similar to lupus so you know what he did? He listened to me as to what symptoms I was experiencing and he was not afraid to talk to the other doctors I see that DO know about vasculitis. He would refer me to them if something was out of his scope, but he would do what he could to make sure I knew where about my health stood rather than sending me home to doctor google.

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!

Sleeping is the Best!

Watching my dogs laze about made me think that it would be nice to live their lives, and then I realized that, my life isn't that much different from theirs at the moment.

I sleep, get people to make me food, and do my best to take care of myself. My sister told me that all I need now is a food bowl with my name on it. Thanks for that.

I've got to make light where I can, personally I think that little anecdote up there is kind of humorous and people that aren't chronically ill are probably thinking that it would be nice to spend their time like I just said I do. But they are only seeing that part.

What I haven't mentioned is that the reason my life seems so relaxing and ideal is because I don't have the energy to do much of anything else. Even things that I really want to do.

This past few days was Fan X, a local Comic Convention here in SLC that takes place in January and I had to miss it. I would have loved to go, I love these conventions, seeing the costumes and interacting with other fans.

There were two reasons I could not go, though. The first being that due to people deciding not to vaccinate their children there has been a measles outbreak in my state. Measles and being on immunosuppressants don't mix. So thanks all you anti vaxers for being unaware of how your choices effect everyone else.

Secondly, even if there hadn't been a measles outbreak I wouldn't have been able to go because I did not have the energy to get out of bed at all this past week. I'm pretty sure that my kidneys are failing again. I have all of the symptoms. I tried to get in contact with my rhuematologist but only managed to get their less than stellar answering service who tells me I have to call back when I tell them I want to leave a message, because taking messages isn't something that answering services are supposed to do or anything.

Hopefully soon I will be able to get my infusions going again so that I can start feeling better. But until then, I will live like my puppies and only worry about sleeping and taking care of myself.

Thanks for reading this ramble.

Yoga vs Me

Oh man, I made the mistake of going to a yoga class with my mother last night. Cue me sleeping in to 1:00pm today and waking up so stiff and painful that I can hardly move. Arthritis and yoga do not mix. I snap, crackled, and popped through as many of the poses as I could but downward dog is just not my friend. Not to mention lung and connective tissue problems makes it really hard to breath during said stretches. Let's not even start on attempting to balance.
It was an experience for sure.

Next time, I will bring a chair so that I can modify the poses to be easier for me to handle.
If you would like to try it, here is a link to a lady who specializes in yoga for arthritis and she has instructional videos on youtube!
https://www.youtube.com/user/KimMcNeilYoga



PS sorry for the sporadic updates.

Random Health Advice From a Booth at the Farmer's Market

This is kind of a funny story, if only because it's become such a common experience for me that it's sad.

On Saturday, my mom, grandmother, and I decided to wander around the local Farmer's Market just to scout out the local goods. Besides all of the usual home baked goods, hand crafted items, and vegetables there was a booth advertising free nerve scans. I was kind of curious so as my mom and grandmother looked at the booth next door which had some really amazing handmade jewelry I would have myself a nerve scan.

To start off, the had me fill in a paper with lists of ailments that you were supposed to circle if you had them. I had all of them, as expected for someone with a systemic autoimmune disorder. Wherein the lady running the booth told me that she just wouldn't live with all those problems. I told her, I don't either. That's what I see doctors for and what I take medications for, duh.

They asked me what exactly it is that I have and I told them Wegener's Granulomatosis. Now, I'm used to the very blank stares that this disease gets, but for this lady her blank stare was immediately followed by a determined look because she figured that what she was promoting could absolutely cure me.

She put the wand up to my neck and began the scan, which, as I expected, lit up like some demented form of Christmas Tree. You know, when you don't have decent veins things get kind of starved for essentials. After looking at the scan the lady then starts spouting off about how they can do back adjustments to fix all of my problems because pinched nerves were probably what was causing the Wegener's. All I could think was, did you miss the part where I said it was an autoimmune disorder, you know, kind of like Lupus. You're back adjustment is not going to cure something that has a genetic component. She wanted me to go in to her clinic and get X-rays and all sorts of weird stuff.

I never even saw a sign on her booth advertising her as a chiropractor or anything of the sort. I politely told her that I would have to think about it, even though I have no plans to call her back or answer the phone if she calls me.

Sadly, this is a common occurrence when you have a chronic illness. Everyone seems to think they can "cure" you and they tend to ignore the whole part about it being a CHRONIC illness. I'm not against alternative methods, but if you choose to look into them, you really need to have a critical eye. Be wary of the people that claim to have a cure; more than likely they do not and are just trying to get money from you. They probably don't care that they could potentially be causing you damage or even killing you. If you have a doctor that you trust, which is an absolute must, bring anything you want to try in regards to your health up with them.

Letting Go

I know it's been a while since I last posted. Just know that for that time I didn't need to write down my thoughts. I just didn't have much to say. Health wise, the last year has been up and down but I've made it through to sit before you today and type some thoughts down for you to read.

This past almost year has led me to a conclusion. I really want to let go of the person I used to be because all that is doing is causing me grief emotionally and physically. I need to realize that I can't be the things I used to be and my life needs to change if I am ever going to get to a stable place.

But that stubborn girl just keeps clinging to me, haunting me like a ghost that needs to be laid to rest. Laying her to rest is just what I plan to do. I want to make a poppet of the girl I used to be and put her to rest; this way, the new me can rise from the ashes and reach her full potential. I know that I will still have some vestiges from my past self, because my new self will have been born from her, but maybe, just maybe, it will help me let go.

That's an Interesting Reaction

So, I already went over the part about how I decided to err on the side of going to regret this later and take the advice of InstaCare. I really should not have.


I took the pills and, if anything, my fever got higher! I also developed this nasty side effect of having my tongue swell up, it wasn't terrible, I could still breath. But talking became a problem. It made calling in to work an interesting experience; the poor cell phone reception plus me tawkink dlie I hadth a mouf thfull ofb oadbeel was probably an interesting conversation to listen to. On the other hand, I didn't have to say much in order to get excused.

Did I mention that I am allergic to augmentin?

So, I trundle off to bed for the night thinking to myself, well, it's just the flu. I should be better by tomorrow.

Then came 3 o clock in the morning. Why is it that everything terrible seems to happen at 3 in the morning? I remember what time it was because, like any young adult growing up in the technology age who is awoken during the pre-dawn hours by coughing up mouthfuls of blood I turned to my internet capable phone to look up and see what could be wrong with me.

Now, when I say mouthfuls, I mean "looks-like-a-movie-set-where-someone-got-shot-in-the-gut" MOUTHFULS, it sounds disgusting but the stuff was leaking out of my mouth even when I wasn't coughing. The silly thing was, as terrified as I was, I didn't go wake any of the other FOUR people in my house because I didn't want to worry them.

I have to say, that these were probably the actions that got me moved from my basement room into the guest room across from my parents.

So, I sit, and I wait. I don't really want to go back to sleep fearing that I might not wake up. But, according to the InstaCare my lungs look fine. I have nothing to worry about. It's just the flu. Some deadly, deadly flu, maybe. Have some antibiotics!

Finally, I hear other people awake and moving around as they get ready to go to work. This is when I force myself to stumble up the stairs and find out a really interesting fact: if you're coughing up blood and it has already been established that you're not breathing 100% physical and emotional stress are things you should avoid.

I make it to the kitchen table and even though I am gasping like a fish I'm not getting any air. Between the blood and my cough I had no space for air to travel. Luckily, I have a mother who knows how to deal with such situations!

She quickly got me a small glass of Sprite in order to clear my throat. Hallelujah! It worked! Thank you Mommy! You saved me!

Also, I decided that I should go see my real doctor.