Sunday, June 26, 2011

Doctors, Specialists, Quacks, ER's and Maybe Even Some New Age Healers!

So, you've just been informed, maybe after countless doctors appointments, maybe after one faithful trip to the ER, that you have this rare disease that can cause life ending damage to your internal organs if you don't keep an eye on it. This is the moment where you decide that maybe that's not a good thing and it's something that you should get on top of as soon as possible. I mean, no one (well, maybe that one person has, cause there always has to be one) has said that end stage organ failure is on the list of things they want to do before they die.

Then, maybe you start thinking, 'Well, I'm not a doctor, how do I know my livers and spleens and kidneys and lungs and harpsichords and whatever else is inside me is being damaged?' Just as a forward note, you won't notice your kidneys going until they have packed their bags and have all but left the building; they don't hurt. You might get a hint if your, pardon, urine is particularly pale or foamy, but that can also be caused by drinking lots of water. Sometimes you'll get visible blood which is a sign that you need to head to the nearest person with needles and a stethoscope, but rest assured, you won't know it's your kidneys doing this to you. It could be a bladder or urinary tract infection. I had one of those recently, in the bladder, lots of blood and more pain than anything I've had with my kidneys (kidneys that the doctor was surprised weren't failing because of how much damage there was).

But, back to the original point. You are not a doctor, so you might need some help in monitoring these things that are inside you and make life so very livable.

Enter the specialists. As a Weggie (I wonder if we should come up with something new to call ourselves, as our disease has had a name change after all) I need help with all the areas that my disease has effected. I've mentioned my ENT before, he only looks at my ears, nose/sinuses and throat. This is what he does. He fixes any scars that come and can give me tips on trying to keep these parts of me healthy.

I also see a pulmonologist. This lovely lady is the one who actually got me into full blown treatment for Wegner's. Really, though, she takes care of my lungs. I get chest x-rays whenever I go in and she is helping me to prune the little tree growing in my airbags. She helps me keep my breathing in check with all her fancy inhalers and oxygen monitors and tips about keeping allergens down and preventing an asthma attack or working through one if I'm stuck without my inhaler. Mostly she just impresses upon me that I need to keep the inhaler on you I swear... 

Of course, I also see a rheumatologist. Now, this one can be a little tricky. You can't just go see any rheumatologist, but you have to see one that specializes in vasculitis. Many of them don't. But you need to have one.You are more likely to find these special breeds of doctors near big medical and research centers such as John Hopkins or the Mayo Clinic. I lucked out, again, in that mine are relatively close to my house, are very knowledgeable and I didn't have to search for them. They are connected to Intermountain Medical, but are not entirely dependent on them so my insurance will cover me going there.

Many other people with Wegner's see a renal specialist so that their kidneys can be monitored. I do not, mostly because my rheumatologist shares his office with a kidney specialist so they can consult right there. Lucky me again, I have one stop shopping in this area.

You'll also probably need a GP. I must stress though that you need a good GP. One that doesn't mind taking a backseat to the specialists. I am currently struggling in this area. My GP that I've had for many, many moons, from back when I was only so high has trouble dealing with my condition. I have gone to him before, experiencing sinus activity (this was post diagnosis which he was aware of) I mentioned that since I started treatment for my Wegner's I have had MRSA before (for those that don't know, MRSA is an anti-biotic resistant staff infection that can turn into flesh eating bacteria if left unchecked) and I thought that this was the same thing. It looked and felt the same and is a known risk for people on immunosuppressant drugs specially those that work in a high risk area (I have mentioned before that I work with pre-kindergarten kids, right?). He didn't even check me for it, just blew off my concerns, gave me an antibiotic that didn't work and when I went in to see the ENT two weeks later was diagnosed with MRSA... again. Currently, I am looking for a new GP, possibly one that is an internist.

Don't be afraid to try out some new agey things either. I have heard some vasculitis patients describe acupuncture as something that helps them a lot. I haven't tried it, yet, you need funds for things like that. Massages can work wonders (also something I can't afford to do), yoga and meditation help a lot as well. Part of vasculitis is triggered by stress, so anything you can do to keep stress free will probably help. Some supplements will be good too, just don't go for things that are supposed to boost your immune system. As my rheumatologist told me, your immune system is the problem, the treatments are supposed to suppress it, what would be the point of doing something to boost it?

Granted, I am no doctor. I am only a patient. A fairly new patient at that. If your doctors have told you something different certainly listen to them over me!

Friday, June 24, 2011

Creating Hope Act

     Just as an aside, I wouldn't have even known about the Creating Hope Act if it weren't for someone posting about it on the Wegener's forums I watch. A big thanks to the original poster! I hope I did a decent job summarizing the article. The Orphan Drug Act was signed into law by President Ronald Reagan on January 4, 1983. This original law completed its purpose of helping R & D which in turn helped create treatments whose only focus was on rare diseases, but much more needs to be done. In the United States alone over 25 million Americans suffer from one of the 7,000 + "orphan diseases". An orphan disease is a disease that has not been a focus of pharmaceutical companies because there is a lack of financial pressure to do so. In other words, the pharmaceutical companies would not receive as much profit from these research into these diseases because of their rarity or they are diseases more prevalent in developing nations. This makes it very hard for a person with a rare disease to get a diagnosis, let alone treatment. When you consider that many of these diseases, when they are active, can cause death or cripple a person in a matter of months and it takes YEARS for some of them to get diagnosed (I was lucky in that it only took me about a year to get a firm diagnosis, for many people with Wegner's they can go decades if they don't have a fatal flair before someone figures out what is going on.) something certainly needs to be done. The Orphan Drug Act offered these companies tax incentives for for doing clinical trials and 7 years of exclusive marketing. More than 25 years later, only 2,400 drugs have been given the orphan designation and out of those only about 370 have actually been approved for use by the FDA.  Recently, though, new laws are being proposed by NIH (the National Institute of Health which is also trying to bring about an Undiagnosed Disease Program) and the FDA that would help unite patient advocates, researchers  and companies that want to develop new therapies. One such law is the Creating Hope Act, Senate Bill 606, which would enable drug developers to receive a "priority review voucher" which a company could sell or transfer multiple times if they submit an orphan drug for review. One problem here is the only action that has taken place on this bill sponsored by three democrats and two republicans was on May 31, 2011 where the bill was sent on for review to the Committee on Health, Education, Labor, and Pensions. No one is sure about where prospects for this bill currently stand due to lack of support. This is not the only bill that is hoping to improve the futures for people with rare diseases and there has been some connections made with European counterparts to the FDA and patient advocacy groups in the hopes that we can begin to trade information and decrease some of the processes that are duplicated between each country when it comes to bringing drugs to the market (look how long Rituximab/Rituxan has been available for treatment of vasculitis in Europe verses it only being approved for us in the United States a few weeks ago). The Creating Hope Act and the re-establishment of the Congressional Rare Disease Caucus shows a lot more activity from advocates groups, but they can only go so far. It is up to the patients with rare diseases, their families and friends to write to their representatives asking them to join the coalition in support of these bills. Finding your representative can be done through this link:  Further Readings:

Tuesday, June 21, 2011

It's Never Allergies

I mentioned yesterday that, to my ENT I spoke my standard answer for runny/stuffy noses. It's allergies.

Well, I should know by now that it's never allergies, it's never been allergies and I hope that one day it will actually be allergies.

If you can't guess, my rheumy, whom I saw today went... sorry, you are not having allergies. Your nose was swollen, your hand was and still is swollen, headaches, roaming body fevers. How much Prednisone are you taking?

Turns out that, as I lowered my dose of Prednisone, the methotrexate was not strong enough to take over. So now they are putting me on a stronger chemo, that is if my blood test comes back positive for the enzyme needed to take this chemo.

Yes, a diagnosis with most types of vasculitis come with a crash course, first hand learning experience in various forms of chemo. Each type of vasculitis have different symptoms, and each person reacts to their type of vasculitis different than someone else with the same type. To simplify, I have Wegner's, a type of vasculitis with certain major areas that it hits but it can also include other areas (this is why it is one form of systemic vasculitis), another Weggie (person with Wegner's) can have different organ involvement and can respond differently to the same type of chemo that I am on. Some people also have one flare up their entire life, one round of chemo and their done, other people have a roller coaster of flair ups and remission and are on and off chemo for the rest of their lives, still other people will never have a strong flair up, but never have it completely go away either.

Treating these diseases seem to be very hit or miss. Sometimes the treatments just don't seem to have any follow through! 

So, mine seemed to be responding to the methotrexate, but now it's not. My two options are Immuran, and if I don't have the enzyme (if you take it without the enzyme you end up in the hospital which is all sorts of no good) or something else that I would have to get through IV (my rheumy didn't say what this one was). This also means that I don't get to move on to only seeing the rheumy every other month. I have to come back even sooner!

No, it wasn't allergies. Yes, I still have hope that one day it will be!

Monday, June 20, 2011

ENT, He's Dynomite, ENT, He'll Win That Fight!

Just imagine that the title comes with the music to ACDC's TNT.

Ha ha, I went to the ENT today, and we had a conversation that was very similar to one that I've had with this same ENT before. When I went in today, I had a lot of swelling in my nose, so much so that the ENT could not see up into my sinuses. Even after he put the medicine in my nose to stop the swelling, it was still there. Even after he put MORE of the medicine in my nose and I waited for an hour (I managed to read an entire National Geographic magazine, learning much about dinosaurs and feathers and poppy production in Afghanistan and artificial reefs off the coasts) it was still swollen inside. At least on the right side where it's recently been bleeding a lot. The other side would be normal if not for the running. TMI, I know, but you should all expect it by now.

This runnyness is where my conversation today began to mimic one I had about a year and a half ago. A conversation where the ENT asked me why I thought my nose was the way it was and my response being... allergies.

This story is not verbatum-
I went to the doctors  on Dec. 1st, 2009- the nose doctor specifically- because my nose had been stuffy for.... two? almost three years? Since the summer after I got my tonsils out anyway-
I wandered into the doc and he does all these tests that I'm not exactly sure what they proved. Some really weird stuff like shutting the lights off in the room and having me put a lit lightbulb thing in my mouth (probably to see my sinuses or what not) and I tell him that when the problem first came about I thought it was just bad allergies- bad allergies that wouldn't go away and no allergy medicine in the world would touch.
He thought that was slightly weird and decided to take a look up in my nose just to see and, lo and behold, he couldn't. I have stuff going on in my nose that this doctor, a doctor who has specifically done nothing but nose, throat and ear stuffs for 30+ years, has never actually seen before.
But at this time I don't know any of this.
So the doc turns and starts pulling out some instruments, turning on this machine thingy which he uses to spray some weird stuffs up into my nose. After he does this he hands me a tissue and says, "This should numb your nose"
These are an approximation of my thoughts. "What are you going to do that my nose of all places needs to be numbed?" as I'm thinking this he pushes my head back so it's resting on the chair and he shoves this spreader thing into my nostril and then takes some tweezers with a cotton piece and shoves that up my nose.
OH GOD DOES IT BURN. But being me, I can show no fear. I take it like a woman and eventually the burning stops. Just in time for him to do the same thing to the other side.
Now, I have no idea what's going on here. I've got cotton shoved so far up my nose I swear I can feel it tickling my brain.
This is when the odd questions start.
"Have you ever broken your nose?"
"Any trauma?"
"Have you ever been in a fire?"
"Not that I'm aware of, but I haven't always been around to monitor what I've been doing."
He kinda frowns and then decides to explain to me exactly what's going on.
"Well, it seems you have a serious amount of scarring going on in your nose- scarring to the point where the outside of your nose has grown into the septum," great, well, that explains why I can't breath through my nose. "Unfortunately, this means I can't see up there well enough to figure out if anything else is going on, so that cotton will hopefully shrink the scars enough so that I can." This is where this doctor, who is not unlike Dr. House but less likely to insult me, get's kind of excited. "I've never actually seen this before, but I've heard of it happening."
"But all those people had been in fires"
"This is the type of scarring you get when you have burns in your nose-"
At this point I'm trying to remember if our house has burned down in the last three years or so (it hasn't) and trying to come up with some other reasons as to how I could have scarred my nose so bad in the last three years (this is the same doc that took my tonsils and he checked my nose before I had the surgery).
"When you thought you had allergies, did you take anything?"
"Well, I took the over the counter allergy stuff- I also tried some of those nose sprays that my doc perscribed, but they gave me bloody noses so I stopped..."
"The allergy medicines gave you bloody noses?"
"Yes... is that not normal?"
"The only thing I can think of is the nasal spray, which the nosebleeds are a side effect of, a very small side effect, only about 15% of people experience it small side effect, caused the skin of your nose to scar and grow together."
"We're going to have to fix this problem."
At this point I am kind of leery as the doctor is now happy, smiling even, like he's excited.
"We'll have to remove the scars and put some plastic stuff (he didn't really say plastic stuff, he used the real words for it that I can't remember what they are) and then put a splint in your nose to keep the scars from coming back."
He pulls the cotton out of my nose and tries to look up there again, no luck, so he then proceeds to jab at the scars with more of the medicine. I thought my eye was going to pop out or something. Weird feeling. By this time my nose feels like it's gone to sleep and is all tingly, but I can still feel the poking. What's worse is it's pushing stuff back down my throat and ******* (Ommitted for grossness)**********
"Let's go sign you up for surgery!"
"..."I signed away for a surgery, another Christmas surgery. Weird. Almost three years to the day that I got my tonsils out, same doctor, same clinic. I am just that good.
The best part was, when I finally got over the shock of how fast all this happened I looked at the pre-surgery instructions and noticed that number two on the list is. Don't pick your nose. Really? They have to tell me this? But anyway, that's the doctors visit that began me on the Wegner's path. After I had the scars removed my ENT decided to run some blood to check for an autoimmune disorder and I came back slightly ANCA positive.

I am almost certain that the only reason I keep getting told by this ENT that I need to come back and see him is that I present an interesting case. Granted, when my symptoms were being caused by some unknown nose eating invisible monster, my case was much more interesting. Now that it's Wegner's.... well, I'm still an interesting case, but part of his curiosity is sated.

Tuesday, June 14, 2011

Tis the Season

For creepies, crawlies and all manner of beasties that fly through the air!

Yes, here in the little state of Utah, Spring has finally sprung... now that we're halfway through June, but better late than never.

This change in season has brought me a new discovery, one which I am bound to find out if it holds true or not. I was out late tonight, standing in my yard (going out at night helps with the sunburns that I am, I didn't know it was possible, MORE likely to get on meds). The mosquitoes were everywhere, swarming and buzzing and biting all the exposed flesh they could find. Except mine.

Bear in mind that I am neither a scientist of mosquitoes, nor am I a medical professional. Everything here is speculation based from my own experiences. They might be different than yours, Weggies!

I am not sure why, I am normally a bug magnet, but so far this year I have got nothing. Not that I am complaining mind you, but I wonder if it has something to do with the meds I am on. I know that mosquitoes are thought to be attracted to certain smells from pheromones and various vitamins, and  I also know that my meds make me lack in a various bunch of those vitamins. I am also a lot colder now than I was before (another thing I didn't think was possible) and most biting insects are attracted to high body temperatures.

Mostly I wonder if it is the potassium. Last blood check I had my potassium levels were low from my meds and I have heard from more than one place that those bloodsuckers love the banana vitamin.  

I am sure that I will find out sooner rather than later if my non-bitingness withstands the summer, but so far so good. I also can't seem to find any information about this online, I am not sure if any of you other Weggies experience this same phenomenon but I'd be excited to know! Is it possible that I have just brought up a silver lining?

Monday, June 13, 2011

Alas, Poor Ice Cream, I Knew Ye Well

... a little too well, if you know what I mean.

Ice cream and I have a very special relationship. It is based on a mutual understanding that, when someone says they have ice cream, I am allowed to have some with the understanding that it is allowed to do horrible, nasty things to my body. This is why ice cream understands that I can't have too much of it, but ice cream feels good about itself because it is most likely the only reason my skeleton has not crumbled to dust by now.

Then my good friend Prednisone got added into the equation and threw ice cream and mine's relationship all out of its carefully balanced understanding.

One of the side effects for Prednisone is weight gain. I know it makes a person want to eat and you can get horrible urges to eat things. If it is edible, it will get eaten becomes the mentality and these urges can be hard to control.(For me it wasn't so much actual urges, I would get hungry, my stomach would growl, the whole nine yards so it wasn't really ice cream that caused my problems, but eating larger portions than what I am used to).

All in all, after six months on Prednisone I have gained some weight. Not as much as I could have gained, mind you but somewhere between the 15 and 20 pound marks, so basically all of the weight I lost prior to my diagnosis (which was probably due to the disease anyway, that's one symptom I would've liked to keep!) found their loving homes on my tummy and hips again. It's more than I would have liked, but if we were going by things that I liked or wanted I would have lost those 15 to 20 pounds.

I am also aware that I appear to have gained more than what I actually have as Prednisone has this other lovely, grand, so much fun really side effect of making you appear very bloated.

According to this graphic, my face wasn't so normal looking anyways....

My face, she looks like a marshmellow! It's always pleasant to go to your GP and have them look at your charter, look at you and then say, "It looks like you've gained some weight, unfortunately it looks like it's all in your face."

My expression was not pleasant at that comment, I tell you.

I've hoped that as I've gone down on the Prednisone these past few months, finally dropping down to 5 mg, that I would get my face back. I can see shades of it sometimes, but for the most part it still gets puffy. I miss you face, come back to me!

Yes, specially during those first few months I spent many a while in front of the mirror pocking at my newly discovered chipmunk cheeks. It was depressing. Even now I have a hard time looking at pictures of myself pre-diagnosis because I miss that girl. That girl who was, albeit very sick, at least not that puffy looking!

Now that I am down on the Prednisone I am focusing again on losing weight (this is helped along by the nausea I get from chemo) most of what I gained happened during those first high dosage months, lately it's been stationary. I check.... some would say obsessively....... but don't most girls anyways?

Friday, June 10, 2011

The Ongoing Chair Conflict

Wednesday happened to be my last day with students until the fall. It was sad and the next day of clean-up met a me full of remorse and nostalgia for little people that I had seen less then 24 hours ago.


At this point, you're probably wondering why I bring up the classroom thing in the first place. You might be saying, 'If I wanted to read a blog about an assistant pre-kindergarten teacher I would have found one! This blog is supposed to be about Wegner's and the odd chick who decided to write about her experiences with it!"

And I would say, "I'm getting to that."

I bring up the class for a couple of reasons A: I teach very small children and B: small children require small chairs and C: small chairs require small, knee cap level tables and finally D: no one ever tells you that part of being a teacher means climbing on top of furniture in order to hang things up and take things down.

Another thing that you might know, or maybe not, is that methotrexate has a side effect that causes massive bruising (as well as a few other not so pleasant side effects that include cancer of all things. Cancer? Isn't this used to treat cancer? I guess you fight fire with fire...).

Back to my little narrative, though. So Wednesday comes along, the children are all excited and even though they have grown over the year, they are still very short. As I walk down the small aisle between our two tables one of the students suddenly decides to stand up. I mean, really suddenly. I mean, she probably, actually jumped up. Even if she was tall enough for me to see while I carry things in my hands that block my vision, her movements were to quick for me to maneuver away from. Cheetah speed, these kids have. I do not kid.

So, my leg is suddenly not where I had planned on it being. It has been replaced by a small child. At this point someone needs to start playing catastrophe music, or possibly the Benny Hill theme. Half of me is trying not to step on or fall on the child while the other half of me hadn't yet realized what was going on.

Previously, I have already come to the decision that the little chairs are waging a war of some sort on us taller humans. The chair wrapped itself around the leg that hadn't figured things out yet and I found myself tipping over like some kind of surprised tree.

At least my arms know the score, one of them attempted to catch my fall and became the casualty in this little trip. It caught the edge of another chair, preventing my face plant and quite possibly the squishing of a small child but it came home a little black. Bruising.

This isn't the first time this has happened, no. Some of us were not named Grace for a reason and are not known for their ability to walk and breath at the same time. Add in methotrexate and you have a very colorful person that would be better served wrapped in bubble wrap.

I had done fairly well on the bruising thing until Spring. I was doing so well, in fact, that I thought I might make it through just fine. That was, until I had to hang up some student artwork. This adventure saw me climbing on chairs and tables and in my concern about one of the tables tipping over I over stepped a chair. I did find out it is possible to stand on a surface that is well on its way to having a 90 degree angle to the floor, but I also found out that small bumps can result in huge bruises when you are on certain medications.

                                                           It's like a rainbow on my leg!

If you can ignore the pasty white paleness of it, that's the kind of bruising I'm talking about. That picture was also taken almost a week and a half AFTER the incident in question and it was still growing. That bruise was there for almost two months, the area is still tender to the touch, though the color is gone. The good news. I wasn't too concerned about blood clots... if my blood is now that thin.... (please don't take what I say as sound medical advice, I have been known to ignore things, I had three posts just on that subject alone!) I did end up showing it to my doctor, I was concerned that it might get infected. I figured it was just my luck.

There are no pictures of my wrist as it just happened a couple of days ago and is in a really awkward spot. It probably also won't get this big. 

To recap- methotrexate causes bruising, bad bruising. If you're on it try to avoid small chairs at all costs. They are not your friends. They will do everything they can to destroy you! Beware!

(Ha ha, I bet you thought  I was going to talk about walking into tables. Just know that, just because it wasn't spoken of, doesn't mean it didn't happen. I need to wear knee pads or something)

Tuesday, June 7, 2011

School Work

I just have to brag a little bit today, but I passed my last course (adolescent and childhood development) with a 99.3%! I am currently maintaining a 4.0 GPA for my Master's (granted, I am only five classes in, but I hope to keep this up as long as possible)!

Now, some people might say that this is really no big deal as I am just going to school online, but I personally cannot fault learning and bettering education no matter the venue. To anyone who is going to school, anywhere, GOOD FOR YOU! Keep up the good work and don't let anyone tell you that you are wrong!

For me, online school was the only option I had. The Wegner's itself and my treatments for it mean that I get exhausted very easily. Because the whole point of the treatments are to suppress my immune system, it also means that I get sick very easy. Like, really easy. Say, someone walks in the same room with me and has a cold, I now have the cold too. That's how easy it is. You might then ask me, "Why are you teaching pre-school then?" and my response would be, "Because I enjoy my work. It makes me happy and I feel like I am making a difference." and life would be pretty terrible if I did not have something to make me happy. Of course, I'm on antibiotics more often than I am not, and  I can't make it through the day without a nap.

This is why online school was the best option for me. Before I was diagnosed, I knew I wanted to go back to school, but I hadn't really decided on where yet. A few months after I was diagnosed, I was forced into school because I just could not afford the student loan payments and my medical bills. It seemed like a smart move at the time, I thought anyway. I wanted to go back, I couldn't afford to make my loan payments, and school can be done online. It seemed perfect.

Of course, I have to budget my time very carefully so I don't over exert myself. I might not be traveling to school, but I still have a lot of work to do.

Anyway, don't let anything stand in the way of what you want to do. You can't let a disease define your life. For a while, my disease put my life on pause, but now I am back! Find a way to make things work for you!

Monday, June 6, 2011

Lab Ratterie

So, I mentioned last post about the Genetic repository tests and how I might be considering them. Well, I'm not anymore. I am not sure if this is the case for all of the testing sites, but for the one closest to me I have to join the longetudinal test. I am not particularly wanting to be longitudinally studied mostly because I do not want to transfer my Wegner's care to a different doctor. I have found the doctor I like, their treatments are working well for me and they have been there with me from the beginning. Competent rheumatologists who don't act like they are the be all end all of knowledge for you are hard to come by. I like the fact that mine shows me my blood work and doesn't treat me like I'm an idiot and how dare I ask questions or raise concerns about the state of my care. If you have a dr., any kind doesn't even have to be a rheumy, that treats you like a number FIND A NEW ONE. Think of it this way, they need your payment more than you need them and there are probably other doctors around that would be more than happy to treat you (I have heard that the Mayo clinic or John Hopkin's are willing to fly some vasculitis patients to their centers, but don't quote me on that). Shop around, join a group (the vasculitis foundation group on facebook is wonderful, so is the Wegner's Vasculitis page found on the same website). I know that rheumies can be hard to find, specially ones that treat vasculits, and you may have to sit in a doctors office filled with people much much older than you (that's my case, I am the youngest person in the waiting room, every time I go in) but a good doctor is worth it!!!!!!!!!

The only reason I might consider doing this study is that it would appear that I would only have to pay for the first visit, after that they would be free. This is tempting for one main, glaringly large, huge reason: when I turn 26 I will be flung free from my parents insurance. Now, with healthcare in the United States being such as it is, if I have a break in insurance for whatever reason (say, I don't have a new insurance lined up to take effect right after I am thrown off my parents') then I can no longer be covered for my Wegner's. This becomes a problem for me as A) my current job cannot afford to pay me insurance (funny, I work for the state) and B) it won't matter anyways because around the same time I turn 26 I will be jobless anyways as I have to start my student teaching which = jobless. I have considered medicade but apparently they will not cover you if you are a full time student. This leaves me in a quandry, student teaching counts as being a full time student, but I can't work at the same time as student teaching is a full time job that you aren't paid for.

Which leaves me saving up right now so I can buy my own insurance, hopefully. It also leaves me praying for this so called "socialized medicine" health care bill.

There is also the issue of health. I've already been told that I am doing too much. But that's what summer breaks are for :) Believe me, come Friday I am going to attempt at being a lady of leisure. My classes are online and I only have a few tests and 98 observation hours to do over the summer! This is me relaxing. Don't worry though, whenever the snow decides to melt and I can gather up a swarthy crew to sail off into the mountains through the floods this year, I have a few weekends planned away from everything.

Saturday, June 4, 2011

Testing, testing, testees wanted!

I was perusing the intrawebs as I am known to do sometimes and I came across some interesting factoids on one of the vasculitis pages I frequently lurk.
There's a VCRC Genetic Repository study currently going on- they need something like 1300 participants from several different types of vasculitis: Churg-Strauss syndrome (CSS), giant cell arteritis (GCA), microscopic polyangiitis (MPA), polyarteritis nodosa (PAN), Takayasu's arteritis (TAK), and Wegener's granulomatosis (WG). They are looking for genetic materials from patients in the hopes that they can find some king of genetic link for these diseases. As of right now, there is no known cause for vasculitis.
Study Name: 5510 - VCRC Genetic Repository One-Time DNA Collection Protocol

  • VCRC Genetic Repository - Recruiting
    The Vasculitis Clinical Research Consortium is pleased to let you know the Mayo Clinic, Rochester, MN, and Johns Hopkins Vasculitis Center, Baltimore, MD is now enrolling patients for our study: VCRC Genetic Repository One Time DNA Protocol.

    About this study ~
    This update also provides information such as a study summary, eligibility criteria,...
  • Boston University School of Medicine (VCRC)
  • Boston, Massachusetts Principal Investigator: Peter Merkel, MD, MPH Contact Person: Manuella Clark-Cotton Office: 617-414-2509 Email:
  • Johns Hopkins University (VCRC)
  • Baltimore, Maryland Principal Investigator: Philip Seo, MD, MHS Contact Person: Alexander Pinachos Office: 410-550-4580 Email:
  • Mayo Clinic (VCRC)
  • Rochester, Minnesota Principal Investigator: Ulrich Specks, MD Contact Person: Sara Biorn Office: 507-284-4862 Email:
  • Mount Sinai Hospital, Toronto (VCRC)
  • Toronto, Ontario Canada Principal Investigator: Simon Carette, MD Contact Person: Julia Farquharson Office: 416-586-8616 Email:
  • St. Joseph's Hospital, Toronto (VCRC)
  • Hamilton, Ontario Canada Principal Investigator: Nader Khalidi, MD Contact Person: Sandra Messier, RCT Office: 905-522-1155 x 35873 Email:
  • University of Pittsburgh (VCRC)
  • Pittsburgh, Pennsylvania Principal Investigator: Kathleen Maksimowicz-McKinnon, D.O. Contact Person: Dawn McBride, RN, BA Office: 412-586-3545 Email:
  • University of Utah (VCRC)
  • Salt Lake City, Utah Principal Investigator: Curry Koening, MD, MS Contact Person: Julieanne Nielsen, BS Office: 801-585-0798 Email: I emailed the center closest to me, but they said that I would need to transfer my care to their clinc (there is also a longitudinal study that they are doing) which is not something I want to do. My rheumy's have been with me since the beginning and I am responding well to their prescribed treatments. I am going to email them back to let them know I was only interested in the genetic repository. The closer they come to finding a cause means that they are that much closer to finding a cure. All info on the study retrieved from the Vasculitis Foundation on facebook.    

Wednesday, June 1, 2011

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....