Happy New Year!

I hope everyone is having a nice new year so far! I haven't done much. I know I keep harping about a surprise, but to be truthful I haven't had time to work on it all December!

Now that the new year has begun it's time to get back to work!

In other news, this whole hospital change my rhuematologist made has been such a pain. I've been trying to get three prescriptions filled for over two weeks now. I've been out of them for that long (I did get an emergency supply from the pharmacy but have been out of that for two weeks). The pharmacy hasn't heard anything back from my doctor.

I called his office today and after waiting on hold for 15 minutes I finally get to talk to the receptionist lady who asks me what the problem is. I tell her I have been out of several prescriptions for two weeks and the pharmacy is saying that they are waiting on confirmation from my doctor. I wanted to know what the hold up was.

Apparently, no one in his new office thought to even let him know I had been trying to contact him and the pharmacy had been faxing for refills! Two weeks! Two weeks all of this stuff has been with the office and the front end staff have been ignoring it. All I could get from her is that she would put an alert on the paperwork that says it's urgent.

So I still get to wait. In the mean time I'm stuck suffering from headaches and withdrawal/shock symptoms from the anxiety med that I have been out of. It's not the type of drug that you can just stop and I have essentially been forced to do just that. And I've had to struggle along without having pain medication which is really cutting down on my sleep which just makes the anxiety that much worse!

I am not pleased with his new office staff. I miss the days where I knew all of the staff by name and knew that they would do just about anything to help and would stay on top of things.

I guess that's what happens when you go from a small, private office to a big University hospital.

I Don't Want to be a Mummy

Yes, you read that right.
No, I'm not just saying Mommy with an accent.

Today I had a check up for my sinus surgery so of course that means you get the scope. I don't actually mind the scope all that much, and maybe I'm weird but I like watching the camera move through my sinuses and throat.

Things did not go as planned, though. The sinus that was by far the most damaged is not healing correctly. The skin looks like the skin of my sinus was trying out for the part of Freddy Krueger; all red, inflamed, with sores, and pits and what have you. There was also a scar band started.

That scar band is why I titled this "I Don't Want to be a Mummy" as we saw it on the screen and the doctor suddenly hands me the end of the camera with a "I'm going to need both hands". He then proceeds to pull out of a drawer a giant metal hook with a blunt end.

Immediately, I knew where that hook was supposed to go and I also knew that it wasn't going to be a pleasant experience on my part as thoughts of 6th grade Egypt Studies flashed through my mind.

Anyway, the doctor proceeds to shove the end of the hook in my nose and press it against the little band of scar tissue. And he presses some more. And more. My head was actually being forced backwards as I held the camera in place, but still, that tiny little band must have been made of steel for all the good the hook thingy was doing.

Luckily for me, the doctor decided to stop and we are going to wait and see if A: the scar gets bigger and B: if Freddy Krueger continues to take over the inside of my sinus.

It would be nice if things went smoothly for once, but that's not really to be expected with vasculitis.

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

.

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.

Surgery Over

So I had my sinuses roto rootered yesterday. Hopefully this will lead to better breathing in the future. It was kind of funny because the surgeon was running ahead of schedule, how often does that happen (?), so he was trying to rush the nurses through putting the IV's and stuff in and he finally just got fed up and came to collect me and take me down to surgery himself because he couldn't stand to wait for the orderlies to do it. The whole trip to the surgical suite other nurses would give him a hard time since he used to be an orderly at that hospital before he became a surgeon.

I had some trouble coming out of the anesthesia, my oxygen wouldn't stay up and my blood pressure kept jogging around. But I am well on the way to mending and will hopefully be able to smell and taste things again! At the very least it will be nice to not have a constant sinus infection.

Have fun all you vascies attending the conference in Florida! I hope you all have a wonderful time and learn lots!

Nobody Nose

One week from tomorrow I will be undergoing more sinus surgery. I'm a little disappointed that I have yet to see any super powers develop from the 3 CT scans I had last month.

I was hoping to at least be able to glow in the dark or something. Those comics have really mislead me on where super powers come from....

Anyway, the scans showed what I suspected. My sinuses are way messed up. One of them above my eye is completely full of tissue that they're going to have to go in and scrape out. On the plus side, this will hopefully solve some of the breathing issues I've been having.

I hope it's not a hard surgery, I know that my last one was pretty simple in terms of recovery time. Of course, that was back before I had been diagnosed so we'll see.

This is one that I made for awareness month that I didn't put out.

I'm going to keep on raising awareness in my own way and keep on helping out with my local chapter. When I see the memes I've made shared around it makes me happy! That's just what I wanted them to do; go out and spread so that other vascies can get a laugh and share something that will maybe get others to think about Vasculitis!

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."

or

                         "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!

In Sickness and in Health

In Sickness and in Health

The above link goes to an article that talks about how men are more likely to divorce or dump their spouse who gets sick than a woman partner. Really, there's only a six percent difference between men and women who leave their sick spouses so it's not that much of a difference, but it is still enough to make me sad.

I know that not everyone out there has the strength to handle having an ill spouse; hell, not everyone out there has the strength to handle getting sick themselves, but you'd hope that the person you chose to spend your life with would stick with you no matter what.

It's very disheartening to learn things like this even though I don't have a significant other. It kind of reinforces some of the thoughts that I already think to myself when it comes to dating or relationships. I don't want to burden someone with the heavy medical baggage that I carry and it doesn't matter how often I tell myself in my head that the right person won't care, it's still enough to get me to push people away before I get into a position to be hurt.

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.

Wegner's Grannywhat?

Alright, what I have is a mouthful to say and is currently undergoing a name change as are most vasculitis types. This is because the names don't really say anything about the disease. This can be dangerous because not many doctors know anything about these diseases/syndromes. I have actually had to explain what my disease is to medical staff before and ended up getting an antibiotic prescribed to me that would have seriously interacted with my most important drug in the cocktail I take. It was another lucky break that worked in my favor here, my mom thought I was allergic to the drug so she called my rheumy (rheumatologist) to see if there was anything else I can take.

Back to the point, though, Wegner's Granulomatosis (VEG-uh-nurz gran-u-loe-muh-TOE-sis: Wegner's refers to the discovering doctor and Granulomatosis refers to the type of tumor like growths and damage that can occur to the organs) is a type of vasculitis that effects the small and medium sized arteries providing blood to the upper airways (sinuses, nose, trachea), the lower airways (lungs) and the kidneys (if you don't know what those are...) (Mayoclinic) but it is not uncommon to see it go for the joints (causing a arthritis) and the skin (it can cause lesions and a rash called purpuria (sp?). It can also attack anywhere in the body, there's been cases where people have had it go for their brains I know of one patient where it went for his eyes and ears, it's just not as common.

I had involvement in all the common areas (I am happy to report that my kidney function has improved to around 60% over these past 6 months) and a little bit in my ears (I was near deaf in one ear for 6 weeks). Almost a year ago my sinuses scarred over completely for no apparent reason and I needed surgery to fix them (unfortunately, or maybe fortunately depending on how stinky an area is, I sometimes have no sense of smell and when I do it is not very strong), this is what started my journey down the vasculitis road.

Wegner's cannot be cured, but it can be treated. For a patient that is in an active flair up and not recieving treatment life expectancy on average is only 5 months. This is because the disease causes inflammation in the blood vessels giving blood to these organs. The granulomas themselves are a type of tissue that produces inflammation and they are normally found around the points where the blood vessels link up with the organ in question (Mayoclinic). This is why Wegner's is deadly if not treated, it can restrict blood flow to these organs to the point where the tissue dies. Most Wenger's patients that succumb to the disease do so because of kidney or lung failure.

The good news is, this disease is treatable. There is no known cure and once you have it, you have it for life, but when you are having a flair-up early treatment gives you a high probability of not only survival but also, no lasting damage. Common treatments involve a corticosteroid (such as my enemy that I literally can't live without Prednisone) and other immune suppressing drugs  (most of which were hijacked from cancer treatments) I personally take methotrexate (aka Rheumatrix) but there are also cyclophosphamide (Cytoxan), azathioprine (Imuran)and more recently rituximab (Rituxan) which was finally approved just last month for use with vasculitis. There are also many other supplements that you're doctor may prescribe (I take a folic acid supplement because methotrexate prevents the body from metabolizing this nutrient).

There are many different types of vasculitis, but the one that seems most closely related to Wegner's is Microscopic Polyangitis (or MPA for short, because we all know that short is better. And I can actually pronounce the shorter version of these names!). It causes the same sort of damage, but is associated with a different ANCA (anti-neutrophil cytoplasmic autoantibodies, try saying that three times fast!) which is a protein that your immune system begins producing just for the purpose of killing you (that's a little extreme on the self-hate scale, self!). MPA is sometimes seen as the less severe of the two because it normally only goes for the upper and lower airways. My rheumy told me that they were actually thinking about combining the two disease into one group (ANCA associated vasculitis. Hey, I can remember that AND it would go a long way towards telling people what exactly this disease is attempting to do). He told me that they were thinking of doing this because they were seeing more cases like mine; my first test showed the ANCA associated with MPA, the second showed the ANCA associated with Wegner's so even the disease can't make up its mind about what it wants to be on any given day.

So, that's Wegner's in a nutshell. Or in my shell. Cause I don't think nuts can get vasculitis as they're missing an important ingredient, but they do make good butters....

Reference: http://www.mayoclinic.com/health/wegeners-granulomatosis/DS00833

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.