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.

Health Fads

I don't know if it's the same where you are living, but in my area there is this big health fad right now that's called "Thrive". It's a supplement system that is along the lines of Herba Life and what not. Most of my friends are doing it right now and are raving about how much it has done for their health and energy and yadda yadda yadda.

This meant that when I went to a friend's house recently for a girl's night I got the whole sales pitch and it was so unexpected that I didn't even get to bring out a Chronic Illness Bingo Card!

By Carolyn Thomas @ HeartSisters

This situation would have been a mark on the "My friend was cured by-" "Have you tried....?" and the "You should try this diet" spaces.

I was told to check out the website and see all the people that have Lupus that are using this and how they are doing so much better now, etc, etc.

Well, that may be, but the problem is that out of the first three ingredients two of them make claims to boost the immune system. Further down there were more immune boosting supplements in the ingredients.

Now, for those that haven't been keeping track: Autoimmune disorder = Immune System Too Over Active So It Tries To Take Out Everything. This is why those of us with autoimmune disorders take immunosuppressants. The goal of treatment is to make the immune system not be some overactive mess and boosting the immune system would work counter to those goals.

My rheumatologist, and other rheumatologists, have all said that unless you have an active infection I and other people like me should not be taking anything that will boost our immune systems. This makes sense to me as a more active immune system increases the likelihood of flaring which is also the same principle behind us flaring when we get sick.

For my friends that are "Thrivinig" more power to you, for those Lupus patients that are "Thriving" I hope you've discussed it with your rheumatologists. For me, I will choose to keep on with what I am doing and not increasing my risk of flaring.

Life, Lemons and the Making of Lemonade

I started back to work yesterday. Excited to be headed to a new school, working with a new teacher, seeing new faces (except that mood swings made me all nostalgic for last year and missing my kids :( ). I figured, I'd had the whole summer off, I was ready and willing to be back at work. Sometimes, though, the mind is willing when the body is not. I got home so exhausted I could barely stand up and was (am) still suffering some ill effects.

I am hoping that this is not a vision of the future to how the rest of the school year is going to be. Granted, I did have to start on a new chemo therapy regimen. I already wasn't tolerating the Imuran really well, but with my recent headaches, my jaw freezing up, ankles/knees/legs/feet swelling up, and a recent onset of eye/ear/and nose issues (possibly relating to the MRSA) it was decided that I should INCREASE my dosage from 150mg per day to 200. This is uncommon, from what I understand 150mg is about as high as they like to go. We discussed other chemo options, I think I will flat out refuse Cellcept if it is offered, but my rheumy did broach the subject of Rituxin which has been shown to work well for ANCA associated vasculitis. It is only available through IV, though, can be expensive and has a side effect (uncommon I have been assured) that does something to the brain.

Now, when I said I haven't been tolerating the Imuran that well I mean that it made me really sick. The methotrexate also made me sick, but I find myself skipping doses of my Imuran just to give my stomach a break. I was then given another pill to help ease my stomach, but I do have to go in for an ultrasound as they are worried that I now might need my gallbladder removed. UGH.

I hate going to the doctor and having them add more pills. I wanted to reduce pills again. I don't even get to reduce my Prednisone, unfortunately AND I had to have a blood pressure medication added in. I am up to 8 pills a day. 8! That's without taking any antibiotics or pain medications. I feel like I should rattle when I walk!

The blood pressure meds are the most upsetting though. I have never had high blood pressure in my life, just the opposite. Once I started showing symptoms of the Wegener's (I spelled it right that time!) my bp has been creeping up. Finally, it got to the point where I had to start taking something for it. This makes me feel like I have failed in some way. That I wasn't able to make enough life style changes to help me keep it in control. I worry that people are going to judge me on it. I have gained weight from my meds, and the Pred itself, also contribute to it. It's frustrating. Life sucks right now.

So I'm trying to take my lemons and make them into lemonade (no fancy alcoholic drinks for me, rats) and do the best I can to fight my disease. It may seem like I'm trying to really plug this thing, but if you are in or know someone who is in the Salt Lake City area please let them know about my fundraiser http://www.facebook.com/event.php?eid=182740895131841 It will run Saturday and Sunday, Sept 17th and 18th (if you don't have a fb, send me a message and I can get you more information). Just having people come helps spread awareness which does wonders to help research into causes and hopefully cures. I don't want to spend the rest of my life rattling like a pill bottle when I walk. Please. Think of how my ninja training has suffered.

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!

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?

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.

BUT THAT'S NOT WHAT THIS POST IS ABOUT!!!!

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)

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

Putting the Practice back in Medical Practitioner!

Or, how I learned never to go back to the InstaCare!

October saw a great many things for me- most notably a new job- I ended up with bronchitis towards the end of the month. Tragedy. I missed all of the haunted houses during my favorite time of year. I didn't really think anything of it, I work with kids and germs are in the job description, right?

The cough never really went away, though. I still struggled to breath, got winded very easily and when I woke up in the mornings fresh faced and ready to greet the day after hitting the snooze button at least twice, I had this deep, grating, nasty cough. It was complete with all the gooey bits I'll only mention there. I sounded like a smoker without ever having the added benefits of coolness that cigarettes are supposed to imbue you with.

Oh well, I have asthma, maybe my long term inhaler wasn't working for me anymore. I made an appointment with a pulmonologist, but couldn't get in until December.I didn't worry, it wasn't like I was dying or anything.

November saw me enjoying my work and contemplating going back to school to get my Master's in Education. I was looking at houses to rent. Every morning I was a little stiffer, it was a little harder to get out of bed. My feet, knees and back ached. This isn't a big deal, though, I kept telling myself. I'm on my feet, hunched over, sometimes even crawling across the floor, all day long. Of course I'm tired, I work with very young kids.

December is when everything really hit the fan.

I was already stressed, working for a public school system meant that I was not going to get paid for two weeks out of the month. The holidays were coming up, life was getting hectic.

Oh, yeah, I almost forgot. That silly little cough had grown. After passing out at a meeting the first week in December, a passing out that no one noticed because we were sitting in chairs and watching a movie. I went home and spent the next few weeks in a fog. Not even the friendly kind of fog where everything is comfortable, cozy and you get to spend it inside wrapped up in warm blanket . No, it was the scary movie set in England fog where all the ghosts and monsters lurk and you don't have a working flashlight.

The meeting was on Friday, by Saturday my fever was high enough that my brains were probably wishing I came equipped with an AC. I decided it would be a good idea to see a doctor, little did I know I would have been better off waiting it out until Monday.

I go to the InstaCare, aside from the ER they are the only place open. A flu test is done, unpleasant. Who decided that the best way to check for the flu is by ramming a stick up someone's nose? Are they trying to mummify me? Good thing I have had this particular experience before so I know not to make any sudden movements lest I should be forced into forgetting math. A subject I'm not particularly fond of anyways.

The decision is made that my lungs sound pretty bad, I should get a chest x-ray. We stroll back to the x-ray room, well, the nurse strolled I wandered aimlessly back and forth from one side of the hallway to the next like an extra in a Romero film until I eventually stumbled my way to the x-ray machine.

The room is dark, a little forbidding. I am positioned against the wall/machine arm. The way they make you stand makes it seem like they are about to give you a public flogging or something.

"Alright, I'm going to need you to take a deep breath and hold it."

I tried, I really did. When I came too, luckily there was a chair I was able to flop into rather than falling on the floor, things were kind of swimming. I had to sit for a few minutes before I was able to try again. The nurse, in tones that were entirely too cheery for my taste said, "Well, at least we managed to get that one!"

I still had one more x-ray to go. They needed a side view. Once again I was told to hold my breath, once again I blacked out. It only took me the first time to notice the pattern, but after this second time around it seemed the medical staff was finally catching on. "Hmm, it's like you're not getting enough air or something."

Hooray! You figured it out, can I go back to the room now?

I stumble back down the hallway and wait and wait and wait. I just want to go home to bed, but apparently I died in the x-ray room and this is purgatory. Finally the doctor comes in and it's not as cool as you'd think that he doesn't look any older than I do. I just turned 24, are they handing out medical degrees out of high school now? Where was I when this happened?

"It looks like you have the flu, your lungs look fine." He left.

That was it. To say the least, I am skeptical of the flu diagnosis, specifically since he gave me an antibiotic. Oh well, he is a doctor. I think. I'm pretty sure. I hope.