Twitterpied

I did it.

I resisted as long as I could.

But in order to vote, I had to.

   
I joined twitter. I think I might use this one just to post things about vasculitis and what not- see if I can get any followers. HA.


I can be found here: https://twitter.com/#!/AkujiWit

I did it so I can vote for the vasculitis foundation :) You should too, it's for a great cause!

Hurk Hurk

Bet you can't tell what this post is going to be about! Warning, this one might get a bit nasty.

Back in October it was decided that maybe part of, or most of, my dry heaving/gagging/nausea/sometimes vomiting was due to a gall stone instead of my chemo. A single thing, about an inch to an inch and a half wide wedged in the neck of my gall bladder, the removal of which cost me an overnight stay in the hospital watching bad TV and having my attempts at sleep forever frustrated by a very determined candy striper that wouldn't leave the lights alone in my room.

For a time this seemed to help the sometimes vomiting portion of my problem. Things were looking great!

Then, as November began its too quick turn into December things began to go terribly wrong. My equation went from dry heaving/gagging/nausea/sometimes vomiting to VOMITING EVERYDAY with a side of dry heaving/gagging/sometimes nausea.

I find myself retching into the toilet every time I eat. Hard enough that my ribs pop, my neck cracks and I swear one time my shoe was expelled past my lips to float in the bowl like some limp, dead fish.

Like the other day. I get it into my head to do a little bit of a stir fry thing for lunch. I put the veggies in the pan, got some noodles to put in there, things were going awesome. It was going to taste delicious and be the best lunch I've ever fixed for myself ever. Not too mention the fact that it was healthy! Double points!Not too mention the fact that it tasted wonderful.

It tasted wonderful all the way to the bathroom where I then purged everything. I don't even think I made it all the way into the bathroom for that one. It's just a good thing I have decent aim.

After upchucking not just my meal, but probably everything I had eaten in the last seven years, I began to wonder how it was that I am still so fat. That's when it came to me.

Vegetables.

My meal was kind of healthy and apparently hard to digest. I don't think it's confirmed at all, but, my theory is that junk food is just easy to process since there's nothing to it but calories.

This makes me sad, I actually like vegetables and fruit.

Now, there's some question as to whether my vomiting is due to my gall bladder or not. The doctors were hoping having it out would solve the problem, but it might actually be due to my Imuran so they've also lowered that at the moment to see if it would help. It hasn't.

But I am well on my way to figuring out the possibilities of puking up your own bones!

More Awareness

I know, I know, I talk about awareness A LOT, but we always need more of it. Always.

For many awareness equals ribbons! Lots and lots of ribbons!

Vasculitis doesn't have it's own ribbon, unfortunately. Currently we are kind of borrowing the ribbon color for AIDS (it's AIDS awareness day, BTW) which causes some problems. For one thing, it make people assume you have AIDS for another, it can lessen the impact of the AIDS awareness ribbons. This isn't something we want, but we're kind of limited in color options.

AIDS had the first ribbon, it was red. The Susan G. Kolman foundation then latched onto this idea of ribbons and changed the color to pink for themselves (funny, they can take the ribbon idea from AIDS but when the Vasculitis Foundation wanted to use the word "cure" in their slogan Susan G. Kolman threatened to sue because it would "confuse people").

There are many different ways some of us are trying to raise awareness for ourselves. Weggies Unite suggests having a a pajama AI day. Check out the link, it is an awesome idea! Maybe if we can get a symbol for ourselves we can make actual autoimmune pajamas for people to buy and wear.

We tried the Chase Giving thing, but apparently there were issues with certain groups cheating and using robot voters. We're still trying, several people have started doing drives of their own, trying to raise awareness in their own ways. Friends can help too. They can read about vasculitis, they can talk to others about vasculitis, suggest it for school fundraisers, work fundraisers. Whatever. Every little drop in the bucket helps!

Sad Robot Disease

Having an invisible illness can be a daily struggle. When taking public transport or using my handicapped placard in my car I am always very aware of what other people might be thinking of me. I don't look handicapped. I look healthy. But there are some days when I just don't have the energy level to walk through a store or I am in too much pain to walk long distances. This is when I get the 'looks' from people or the snide comments about how "Yeah, she's really disabled." 

The hardest looks and comments can come from friends and family that don't understand, though. 

 This video explains kind of what it is like to be a person with an invisible illness. Sometimes people, friends, just don't 'get it' because there isn't anything that they can see is wrong with you. You might be in pain, suffering from severe fatigue, but because they can't see you obviously limping or using a device to help you along.

Sometimes it can be hard for them to understand just what it takes to bring yourself to a party. They think you are faking or malingering when you say that, "No, I really need to leave early."

This is what brings me back to the video. Even though the cartoon appears to be between a sad robot with some kind of sad robot disease and a not sad, but kind of mean, robot this is what a real conversation can be like. Sometimes people think you are faking, other times they want to talk about their own health concerns or another friends' and then talk about how they were able to "get over it". These conversations can be difficult to handle and sometimes it is better to get out of them as fast as possible.

Really, though, if you are going to make the effort to go out to a party. Get dressed up. Expend the energy to ride or drive over and speak with people. Talking about your health problems is not the best thing for you to do. Sometimes it is good to get out of your problems. That's what the party is for. For you to feel normal for a little bit of time. Even if you have to leave early, can't eat some of the food offered, try to make the best of it (if this involves asking the host to fix something specific for you, or even offering to bring it yourself). It can do wonders for your health.

The other thing this video made me think- I should start telling people that I have Sad Robot Disease. It would make as much sense as Wegener's current name AND I would get the same quizzical looks when I say the actual name.

Giving Thanks

 I'm going to post this a few days early because, this is me we're talking about, do you think I could remember to post it on Thanksgiving? 

I read an article a few weeks ago about quality of life issues involved with vasculitis and it is what originally got me thinking (along with a serendipitous comment on my Lonely Girl post by Sue Z) what I have to be thankful for. Sometimes it can be very hard for me to see what I have going for me and a reminder is needed to pull me out of a funk. Also, in light of my friend's recent passing I thought about how it is a good time to reflect on what I've got going for me in my life.



My Family: I am recently turned 25 and am completely dependent upon my parents at the moment. At the time of my diagnosis I was working and saving up to move out on my own. After diagnosis I could not live by myself, let alone afford it due to hospital, doctors, and medication costs. Now that I am not working and am being told that I need to stay out of work for at least a year I have become even more dependent upon them.

They are still trying to encourage me in my aspirations, even if I have been forced to change them drastically. They still talk with me about things I want to do one day, such as travel, that I know I might have to ask them to accompany me even if they don't particularly want to go. 

My family has always been supportive of me; my mom goes to most of my appointments with me, and if she can't be there my dad is. I also know that if neither of them can make it my grandfather would be there at the drop of a hat. Speaking of my grandparents, the day after I went to the ER and the day after I was released from the hospital from my recent surgery they welcomed me to stay at their house to make sure that I got my pain meds and to take care of me while my parents were at work. While this is kind of embarrassing, I know of many people whose grandparents would not be so willing to help them.

My siblings have really stepped up and supported me in their own ways as well. I know I end up venting a lot of my frustrations to my sister.

I think most importantly, my family has been willing to put up with the many side effects caused by my medications. They take it in stride when I burst into tears over the stupidest things, or when I forget what I am looking for or what I was speaking to them about, or even what words I am trying to think of when I am speaking to them. They were even willing to accommodate my new dietary needs. My chemo makes me very nauseated and I find it hard to eat red meat, my family is very carnivorous but they were willing to get me other things that I could eat and didn't make a big deal about when I needed to vomit.

There are many other, small things, that my family does for me, but it would take too long to list them all.




My Friends: I know that many people have lost friends because of their illnesses, and while I've had relationships change, many of my friends have treated me the same now as they ever have. Except for now putting up with certain rules I have to follow in regards to being ill and certain things I cannot do anymore. I've had to have some conversations with some, expressing concerns of mine, but this has not caused them to leave me completely.

I have also made many new friends through the VF whose knowledge I rely on and whose support make my journey easier to handle. I wish I had met them under different circumstances, but this was not meant to be. I just hope that I am as helpful to them as they are for me. I try, but I really don't have much experience living with something like this yet.

I am also thankful that I seem to be getting better health care than some. My rheumatologists are knowledgeable and are willing to listen to my concerns and take them into account. They want to do what would be best for me, even when I am being bull headed and just don't want to listen anymore. This situation happens a lot more than you probably think. 

I am also thankful that I am able to go outside and do still have some measure of independence. I've had to give up a lot, but not everything.

I am thankful that I was given a chance to discover what I really wanted to do with my life, and that Wegener's has given me a chance to figure out what sort of person I really am and what is important to me. 

I am thankful that I am healing, even if it doesn't seem like it some days.

Most importantly, I am thankful that I am still alive. I am here, able to type, read, listen to music, dance around, laugh and see people I love everyday. It wasn't so certain this time last year.

There's probably more that I am thankful for, but it would take far too long to work it all out. Some of what I am thankful for I cannot possibly describe here, even. If anything, this year has taught me that I don't know when I'm going to go, but when I get hit hard I always manage to bounce back. Take the time to stop and smell the roses; think about what you are thankful for, all the little good things that make up your life, list a few of them if you can. The world is so dark sometimes that you have to really focus on what you love about it so that you don't get bogged down in the dark. Just think, the dark makes the little bits of light seem to glow even brighter!

Also, Snoopy. I am thankful for Snoopy and Charlie Brown.

Losing Another Good One

I am so angry and sad and upset and frustrated right now.

The world has lost a beautiful spirit all because her doctors were too stubborn to get her the help she truly needed and so vasculitis was allowed to take another person needlessly.

This one hits close to home for me because I count her among my friends. I am not giving her name here out of respect right now as I am not certain what her family would want. This girl, my friend, was only 25 and had been suffering from an unspecified form of vasculitis for 7 years. Her doctors didn't even know enough to tell her what type she had, let alone give her the treatments she really needed. They would not go to the Vasculitis Foundation for help and look at what happened.

My friend's vasculitis primarily effected her muscles and suddenly last night she was unable to breath. Her family took her to the hospital but they were unable to revive her.

This was a girl who had hopes and dreams, talents that the world will now not know. She was beautiful inside and out and will always be remembered. She used to like to write and always had a positive outlook, even when she was feeling down. This is what she had to say about herself

"Does anyone else hate these kinda questions?....ok here goes. Ever since I got vasculitis and lost many things in my life I always try to appreciate everything I have, especially my family and friends.
I love to laugh, and I think it's the best medicine so if u see me giggling for nothing don't be afraid I'm just thinking of something funny so i could be in good health lol.
I am extremely open minded so I never think anything is strange, it's just different and intriguing.
I don't get angry very easily, it's way too much work and I'm too lazy. Writing and reading are my life and with out it, I'd surely go out of existence.
I'm very sensitive, so I will shed tears for you and if u want to talk to someone I will always listen and advise if i can. I believe in walking in another person's shoes so I will always try to see both sides of an argument.
Basically i'm a kind and understanding person....phew there u go nice and boring. ARE YOU HAPPY NOW FACEBOOK?!" (Obviously taken from her facebook page).

This is why research is so important, my friend is only one face of the many people effected by vasculitis who die every year. Research can help stop the pain: The pain that patients feel as their bodies fail them and the pain that their families and friends feel when they see this pain, or when someone they love can no longer keep up their fight.

I will miss you so much my friend, I will never be able to tell you what I thought of Callalloo nor will we be able to talk about the new Being Human. I hope that where ever you are now, you have found peace and are no longer in pain.

Anti-Vaccinatory Psuedo Science

Just the other day I was at my pulmonologist's office getting my lung work up when she asked me if I had gotten my flu shot yet. This was a question that I had been asked almost every hour while I was in the hospital recovering from my gall bladder surgery. My answer to the pulmonologist was the same as it was then. No.

At the hospital they just took it as it was and the subject didn't come up again until a new nurse or doctor came in, but my pulmonologist apparently didn't want to take no for an answer, I needed a good reason to not have the shot.

Now, I'm not one of those zealots who think that vaccines cause autism and think that immunizations are terrible. I'm also not like the girl in the video that claims her vasculitis (CNS brain vasculitis) was caused by her Guardasil vaccination. Even her neurologist is saying that this is what caused it forgetting one of the biggest tenants in science. Correlation does not equal causation. Even as a psych major, someone from a "soft science" I get that.

Funny, considering the fact that CNS, like most all other forms of vasculitis, has no known cause. The closest they can come to giving a "cause" for any vasculitis is a genetic predisposition triggered by an environmental influence such as an infection, stress, or a specific agent. You could argue that maybe the vaccine was her trigger, but they won't say when her symptoms started in relation to when she got her last shot.

Granted, everything I've said about this girl comes from this blog and watching the trailer for the documentary that she is featured in. But, there is very little evidence to support vaccinations being a direct cause for any of these diseases that people claim  they do. The biggest claim is that vaccinations cause autism which has been proven to be false!

I am willing to support the notion that some children might be allergic to things in the vaccine which may cause high fevers that can result in brain damage or other diseases which brings me back to my original topic of me vs the flu vaccine.

I don't get the flu vaccine and I never have, because my mother is allergic to the egg used to make the vaccines. When they gave my older sister one after they had her she too was allergic to the egg used to make the vaccine and had a reaction to it. Because of this the doctors decided that the risk of an allergic reaction is higher for my brother and I so it would be best not to try it. Besides, with the Imuran I was told that I wasn't even supposed to be around someone who recently got theirs, let alone get one if it contains the live virus.

No, people need to get their children inoculated. Not only for the protection of the child, but for the protection of the people in society that cannot, for various reasons, get those inoculations themselves. 


Also, please remember to Vote for Vasculitis it goes until the 22nd and apparently their was a hacking incident with some of the groups so we've lost a lot of the votes that we worked so hard to get. This could lead to research that might tell that girl from the documentary just what caused her CNS!

Research, Research, Research

Alright. I've spoken about this many, many times. Most recently in my rant about Dr. House and his horrible medical skills. Vasculitis in it's many forms needs MORE RESEARCH.

But this comes with a catch. Research can't happen unless there is money. When  all 15 forms of vasculitis are considered orphan diseases they aren't getting much money from the government for research and when we are competing with uber giants in the charity arena such as the Susan G. Koleman Foundation who, by the way, tried to sue the Vasculitis Foundation for having the audacity to use the word "cure" in their slogan (apparently if more than one medical charity uses that word it becomes "confusing for donators", come on) we aren't getting much attention at all.

It always comes down to teh monies.

The good news is that the Vasculitis Foundation has been put among the Chase Community Giving selections. This is something that Chase does every year where they have people on Twitter and Facebook vote for their favorite charities (divided into larger charities and smaller charities). The charities that make it into the top 100 get $25,000 each while the top three charities get a larger portion than that (I think those ones get a part of $3,000,000).

I am not sure if you have to be part of facebook or twitter (please try the link even if you aren't) http://bit.ly/uAP3CB if that link doesn't work there is an event set up that can send you to the right place Vote for Vasculitis! All you need to do is click 'Vote' (from facebook you need to allow the Chase Giving app first) and you will have made a huge difference in someone's life.

Because we are so used to not getting much money, the Vasculitis Foundation is good about making what they do get stretch. We are hoping to use this money for research and support for patients with vasculitis. This means anyone with Behcet's Disease, Buerger's Disease, Central Nervous System Vasculitis, Churg Strauss Syndrome, Cryoglobulinemia, Giant Cell Arteritis (Temporal Arteritis), Henoch-Schonlein Purpura, Hypersensitivity Vasculitis, Kawasaki Disease, Microscopic Polyangiitis, Polyarteritis Nodosa, Polymyalgia Rheumatica, Rheumatoid Vasculitis, Takayasu's Arteritis, and Wegener's Granulomatosis.

This picture might be funny, but it is true. As a patient I know more about my disease than most doctors. 

Research helps us find new treatments, causes, and hopefully a cure. Support helps patients understand their disease and helps patients get to the few treatment centers located around the world. Support can also help get the word and disease pathologies out so more doctors recognize symptoms and less patients die unnecessarily. 

Voting ends on the 22nd!

Happy Birthday!

I meant to make a post yesterday, but forgot.

25 years ago on November 14th during the wee hours of the morning I was born. Little did anyone know the crazy turns my life would have taken in its 25 years, but I like to think that those twists have given me experience and perspective. None so much as what I have experienced over the course of this last year, though.

It was kind of funny, even with the last few months being pretty terrible as far as life goes. Having to leave my job for medical reasons, bills stacking up that I have no way to pay, having to leave my Master's program because I would be unable to do the classroom visit requirements and being told by the Social Security Office that I "hadn't worked long enough" to qualify for Disability. That last one might work itself out, though, because I do qualify for SSI. Of course they have 90 days to decide if they are going to give it to me or not and the process normally involves several rejections.

Even with all of this going on I had a pretty wonderful birthday. I think part of this is because I have a new perspective about things. I have come really close to hitting bottom and have no where left to go but up. I've done a lot of thinking lately (I have the luxury of the time to think) and had come to the conclusion that I've got everything I could possibly need or want so when my mom asked me what I wanted as a gift for my birthday there was literally nothing I could think of.

The best gifts I got were the time I spent hanging out with my mom and sister, going window shopping. Even though I had to stop and get a wheelchair midway through the day I was grateful to have the ability to go out and do this.

On my birthday itself I had a doctors appointment with my rheumatologist. We discussed the symptoms that have been constant for me and talked a little bit about doing a stronger form of chemotherapy. The ultimate decision was that we are going to wait a little bit and see if the bigger symptoms calm down (I did just have surgery) and to see what my lab work looks like.

While there I was able to talk with their phlebotomist, she is the only person that has ever been able to get blood from me without significant pain and bruising. She has also never burst any of my vessels. I spoke with her for a bit about the problems they had getting my per-surgery blood work. The day I went in to them was a poor circulation day in my hands, they were literally blue and even holding them under hot water would not warm them. My hands are the only place where anyone can get blood from me without a lot of problems.

After three tries and not even a flash into the needle, they got someone else to come try. This new person didn't listen to me when I said she needed to use a butterfly needle because the other needles are larger than my veins. She decided to try for a spot along the "suicide track" down the underside of my forearm just under my wrist. In doing this she burst two of those veins and I went into surgery with a black arm.

I explained this to Sabrina, the phlebotomist at my rheumatologists office and she flat out told me that because I was a patient of hers, all I need to do is get the blood work order from the doctor, bring it to her and she can draw the blood and run the tests for me. This is a life saver!

Afterwards I went out to lunch with my mom and later that evening my dad brought home a cake. One that he searched for and had to ask the bakery to get from the back specifically because it was the only vanilla cake they had. The rest were chocolate. I love that he was willing to go to extra lengths to find one that I like even when I know he isn't feeling his best either.

My birthday was wonderful.

Positive Representation or Dr. House, I am glad you aren't handling my care!

You can't imagine how many minutes I sat trying to think of the word that needed to come after 'Positive' in the title of this post. Medication brain sucks. I should, also, be doing more writing on my NaNoWriMo project but a post in the VF forums caught my eye and I had to jot down a few thoughts before I forgot them. It would happen. You know it would.

The post in question was talking about the new episode of 'House' on Fox. I don't watch the show anymore, but was aware that they had mentioned Wegener's on several occasions. Apparently, in tonight's episode the diagnosis was Kawasaki disease (another form of vasculitis) which isn't problematic by itself.

No, the diagnosis only became problematic when you added in what the diagnostic criteria were and the patient characteristics.

Kawasaki vasculitis effects children (most patients are under the age of 5), over 4,200 children in the US a year are diagnosed with it, and it begins with a fever that won't go away even after using fever medication (Vasculitis Foundation). The most effected organ in this disease is the heart, which can lead to aneurism, and some of the symptoms include swollen hands and feet; skin peeling in the genital area, hands, and feet; "strawberry tongue"; swollen lymph nodes; bloodshot eyes (with or without pus); joint pain and swelling. There are more, but most of them mimic flu symptoms. (Pubmed.com).

The patient in this episode of 'House' did not have any of the symptoms, nor was he in the right age group. No, the patient was 30 years old and was diagnosed through liver failure and a brain aneurism. No mentions were made of the heart or the autoimmune problems that go along with an autoimmune disease.

This is why the episode and diagnosis were problematic. Specifically for those of us with any form of vasculitis because they are so unknown and receive no attention from anyone. While this episode may have helped get the name Kawasaki disease out there it also attributed to it a ton of false information. Not only that but they apparently were able to "fix" the condition (if this is wrong, let me know). This hurts people not only with Kawasaki but also anyone who has a form of vasculitis. These diseases have no cure and by telling the general public on a tv show that it is possible to cure them, then there will be no support for research into a real cure which is something that those of us with these diseases and our supporters are trying to gain.

A diagnosis with Kawasaki disease, like most forms of vasculitis, requires life long care. It's not something that a doctor can just come take away and the doctors that think that (there are a few I've heard of that think one treatment is enough) get their patients killed.

I know that 'House' is not pretending to be a medical dictionary and that they are only interested in doing what is right for their plots, but they are not performing in a vacuum. It's just lazy writing and it can be harmful. If they really wanted to do Kawasaki disease would it be so hard to use a family with a 5 year old that was running a high fever for a week and seemed to have a flu that just wouldn't go away? Vasculitis is hard enough to diagnose in real life without adding in fake symptoms.

 Dr. House can go about diagnosing people who have things that they can't possibly have and then doesn't feel like giving them the correct treatment to what it was he diagnosed.  It makes me glad I have a real, competent, doctor handling my care.

Happy Halloween

I do have some important stuff to post about life wise, but for today, in honor of the holiday, I am going to post a work of fiction. It's related, but there will be zombies. .

Lonely Girl

Have you ever had one of those times where your listening to some music and a song comes on that seems to fit your mood absolutely perfect? Cause it just happened to me.

The song is called Lonely Girl by the fierce lady P!nk. I'm not going to debate whether you think the song or artist is good or not, so kindly keep your thoughts to yourself.

I know it seems adolescent and immature to say that "This song totally fits my life" but as music is an expression of feelings it stands to reason that someone somewhere is going to capture what you might be feeling and express it in such a way that others can maybe know a little bit.

If you read this blog in any capacity you know I've had a pretty rough year, from diagnosis where I almost died to last month, which was particularly hellish and I've had to re-evaluate a lot of what I thought my life was very recently.I try not to let it bother me, I try to keep a positive attitude and think that these things are temporary, but sometimes life has a way of trying to overwhelm you.

Overall the entire song speaks to me, but these lines in particular "I'm lookin' for a way to become The person that I dreamt of when I was sixteen Oh, nothin' is ever enough Ooh, baby, it ain't enough for what it may seem"actually caused me to stop what I was doing.

Right now it seems like no matter what I do, in any area of my life, is enough. For every step forward I try to make, I seem to make two steps back. In my life and treatments. Yet I am still going to keep pushing forward, if one way doesn't work I am going to try something else. My dreams may have to be tweaked or put on hold, but I am going to keep striving for them.

If any of you that read this blog feel the same, know that you are not alone and that we must keep fighting!

Raising Awareness

After having to postpone my fundraiser yard sale due to being really sick I finally managed to get it completed. Sort of. Turns out, it was a very popular thing, so popular that I am holding it over for this Saturday too! I'm not sure exactly how much awareness was raised, not many people stopped to read the signs unfortunately, but I at least have over $300 to donate towards vasculitis research!

The timing of this was also kind of serendipitous as my fundraising events are currently coinciding with the birthday of Lauren Currie, a young girl who died last year of Wegener's Granulomatosis. She would have been 16 today if her doctors had been able to recognize the disease she was suffering from before it was too late.

While the Lauren Currie foundation is not a US charity, I would still like to spread the word about their organization. It was set up by Lauren's parents in the hopes of raising funds and awareness for vasculitis.

In honor of Lauren's birthday, most of us in the vasculitis community and our friends have chosen to display the foundation logo and spread the word about Lauren's story and the foundation.

The Silver Lining

Okay, lately I have been posting about really negative things. Granted, it's been a really crappy time (September has done nothing but gotten worse, let me tell you). So, to help get me out of this negative state of mind I am going to try and look at the silver lining.

No matter how dark the clouds and all that...

1. For starters, nearly a year on chemo, I don't really have to shave my legs much anymore. 
2. Now that I have been told I can't work for a while, I'll have time to finish that novel I've always wanted to write. 
3. I'm going to be saving money on puppy daycare, as, I will be home. 
4. All of the vomiting and dry heaving is going to leave me with abs of steel. Steel I say!
5. I had to postpone my yard sale fundraiser because I was sick, meaning that I didn't have to do it on a rainy weekend!
6. I am attempting to work a vacation to Disneyland into my treatment (less stress, relaxing, that diagnosis says vacation to me)
7. I have time to catch up on all those tv shows and movies that I've been meaning to watch
8. The same with all the books on my reading list
9. All the drugs have given me really strange dreams, providing some inspiration for said novel mentioned in number 2

That's about all I can think of for now. I will try to come up with more as I go along. Looking at the silver lining makes me feel better already. 

And Then Came Thursday......

After my last post I decided I should put on my big girl pants. I figured I could handle whatever the world wanted to dish out.

This scene kept playing in my head (from one of the best Disney movies ever, The Emperor's New Groove). That's the way I was going to handle things. That's the way I still like to think I am going to handle things.

Life took me up on my offer, unfortunately.

My week progressed decently. I was setting up my classroom, working well with my co-teacher. I was going to have a great week. Tuesday I began to sneeze. I figured, well, we had a lot of rain so the mold level is high and I've got allergies. Wednesday, still sneezing and now I have a  cough. That's okay, I'm fine. It's just a cold or something. I'll take it easy, at work and then head to the doctor if I'm not better by Friday.

And then came Thursday.

Thursday was just all out to mess up my week, or life. Thursday came on strong. I had a nasty chest, flemy, bloody cough that had me thinking, Friday is going to have to suck it. I'm going to leave work early and go to the doctor today.

Thursday wouldn't even let me do this! No. Thursday went all out and pulled no punches. It didn't just throw the kitchen sink at me, it threw a semi truck at me. Literally. On the freeway. Needless to say, there was an accident and I didn't make it into work.

I was so shaken up that I had to have my father come get me and then come back later for my car. I wasn't hurt, but because the semi swerved into my lane I had to swerve and the guy driving behind/next to me also swerved and rolled his Jeep. Thankfully he was not really hurt, he was standing on his own and the only visible damage to him were his cut fingers. The semi drove off.

I'm not really sure what is going to come of all this; I wasn't issued a ticket at the time, nor was I given a report number, the guy from the Jeeps name or information or any way to figure out what is going on. The police took my statement, information and told me to leave. I still feel terrible about it, writing about it is kind of cathartic.

By the time I got home I had forgotten about calling the doctor and it was a good thing that my mom has my best interests in heart because she came home, made the appointment and took me to it. I kept thinking that the day couldn't get much worse after my pre-8-o-clock disaster, but it did.

After two days my allergies or cold or flu or what have you had progressed into an ear infection, bronchitis on its way to becoming pneumonia, a sinus infection and oh, by the way, your throat is swelling up. You maybe need to go to the hospital. This suggestion was from the same doctor that sent me home back in December when I was hacking up blood with one round of antibiotics and the assurance that I'd be better in a week. 

Luckily, I didn't have to go in. Just put on a really strong antibiotic and given steroid shots. I was also being put on my strict promise that, if I wasn't much better by Friday I would come back in for more shots and or a hospital stay. I did not call back on Friday. I spent the entire day in bed. I didn't get up. I didn't even get dressed. I did feel a little bit better (which was why I decided not to call, not just because I didn't want to go to the hospital).

It makes me wonder, though, how much I am going to be able to work this year. It only took two days for me to progress from just a sneeze to being threatened with hospitalization. This is how immunosuppressed I am.

I want to hide under a rock now.

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.

Previously On....

A Little Life Comma. There was some question as to whether or not I had another MRSA infection. Well. I do. Again. Now I need to go get a head CT to see if it is in my sinuses (something I should have done last week but didn't. If you've read the blog this long you should know me well enough by now to have expected a similar answer). 

On another note. I am going to be hosting/running a fundraiser for the VF this coming September (on the 17 and 18). All proceeds will be donated to the Vasculitis Foundation and I plan on providing information about the 15 types of Vasculitis to the people who come. I also realized that, since I have a food handlers permit I can make cookies and rice crispy treats for this shindig. I am hoping to get some artists to donate some artworks too.

Having never done anything like this before, I hope everything goes okay!

Vasculitis Awareness Yard Sale Spectacular!!!!!

Cavities

So, I just realized that in all of my posts I had been spelling Wegener's wrong. Out of both words in the disease name, I get the short and easy one wrong. Yup. Also, try typing in Wegener's Granulomatosis into google and search images.

Are you now scarred for life? Scary stuff. And then you see that there is a picture displaying a plate of food about halfway down the page. Wonder what that is doing there. I certainly don't know.

Anywho, I went to the pulmonologist on Friday (it was the Dawn of the Doctor's Appointments as I went to see a new primary physician). Got my usual tests run, chest X-ray and what not. My breathing is good, oxygen levels never dipped below 90. But my X-ray looks like I might have something going on that needs to be kept an eye on.

In my tradition of never doing anything less than 110% I got what is possibly my first ever cavity. Of course, it can't be in my teeth, no, this one looks like it is in my lung. Maybe. The only way we can know for sure is if I get an MRI or a high contrast CT of my lung. This isn't something my Dr wants done right away as it doesn't seem to be bothering or effecting me too much and I need a CT of my sinuses more so than one on my lung.

I have a stuffy nose and with my previous MRSA infections she thought is was a good idea to test me for it again. If it comes back positive, I need to get a CT to see if it is in my sinuses. Having an antibiotic resistant staff infection next to my brain would probably not be the best thing for my health.

We'll see how this episode turns out probably next time on A Little Life Comma (also we'll continue looking at other forms of Vasculitis).

Joy

Get an understanding of what you need to thrive rather than a list of things you have to do.

I got this from the Wegener's group page today and had to share it for a while. 

Sit. Just contemplate the meaning of the words. 

 

 

 

Are you done? Good. I think this is probably a good idea for everyone, not just people who have chronic illnesses.  Living for things that help you thrive alleviates depression which can be a big problem for people suffering from chronic illnesses. Specifically since, at least in the case of Wegener's the disease and its treatments can be debilitating. Most days have some sort of pain in them, and my energy level certainly is not what it used to be. 

This has made me decide that I would really like to conserve my limited resources for things that I love. Teaching, working with children is something that brings me joy. Once public school starts up again I will be doing just that. I love to feel like I have made a difference in the world which is one reason why I think rescuing a puppy has done wonders for me. 

This "little" guy, leaning on my tummy

 Yes, he frustrates me sometimes, but for the most part when I look at him I think that, if we hadn't rescued him when we did he wouldn't be alive right now. No one wanted him, he was skin and bones, he'd been beaten, horribly abused and then dumped out in the wilderness to fend for himself. He needed surgery and medication when we brought him home but now he is flourishing. I am even contemplating bringing him to class one day so the kids can see him. 

Things like this are what makes me thrive. I need to stop thinking about what I "need to do in my life" and what I "should be doing right now" because, frankly, I can't do some of those things right now, they are just out of my reach. So what if I have to take a few months off school until I can start feeling better again, it doesn't mean I won't ever go back. There are reasons why I am not out doing things other people my age are, why I still live with my parents and other social ineptitudes I seem to suffer from. Why I have moon face and would rather not look in a mirror. Focusing on these things makes me feel poorly which will only serve to set me back further. 

No, I shouldn't ignore these things completely, denial won't do me any good either. Having a pity party can be helpful sometimes. Just not all the time. 

So, to move away from the dark I need to look towards what I need in my life to make me happy so that I can thrive. 

Somehow I think that this post doesn't make much sense, but I just wrote the thoughts as they came to me. I've been receiving treatment for 8 months now and am still going through periods of anger and depression brought on by having a chronic illness and aggravated by some of the meds I take. I wonder if they will ever go away?

Creeping Up Behind

to attack you when you least expect it!

Except instead of Khan it says WEGNER'S and I would probably be shaking my fist.

I spend the entire week trying to take things easy so that I can be well rested for a date today, but no. Wegner's doesn't care about all my precautions, it doesn't care that I have plans, it doesn't even particularly care that it is really cramping my style. In fact, doing the opposite of these things is Wegner's goal I have come to believe.

I won't let it win. I am still going to go on my date (it's a get to know you date) even if my leg is all swollen and achy today, even if I feel gut punched, even, YES EVEN!, if I woke up with a nasty bloody nose this morning! Some of you might think it's silly of me, but I have really been looking forward to going out with this guy and I am going to do it.



Whether it kills me or not!

Churgg-Strauss Syndrome (CSS)

Finally I get around to doing something I said I was going to!

On the list of Vasculitis, Churgg-Strauss Syndrome is another type of ANCA associated vasculitis which makes it a closer cousin to Wegner's than, say, TAK (which we will also get to eventually!).

CSS is also systemic (multiple systems) and shares some common symptoms with PAN (polyarteritis nodosa) which is another type of vasculitis. What makes this type different from PAN, though, is the presence of granulomas and eosinophils in the blood (an eosinophil is a type of white blood cell which usually only compromises about 5% or less of a person's total blood count, in a person with CSS they can make up as much as 60% of a person's blood count). Also, the ANCA's.

The "typical patient" (though we all know how this typical patient stuff works. If we went by that I should be a middle aged man of European decent) is a middle aged person, distribution between male and female is roughly equal, with new onset, or newly worsened asthma.

Now, for a long time my Wegner's also presented itself as asthma, but it is one of the defining features of CSS and CSS is the only type of vasculitis where asthma is a defining characteristic. This doesn't mean that everyone who has asthma has CSS, only a very small minority do, but everyone who has CSS has asthma. Other symptoms include nasal polyps and allergic rhinitis. After this it moves on to the presence of eosinophils in the blood. Finally, the disease will move into the vasculitis stage. Much like Wegner's, CSS can go anywhere in the body. Wegner's doesn't often go for the heart, but CSS can and does. The heart and kidney's seem to be CSS's big organs of choice (at least according to Johns Hopkins) with a smaller likelyhood of it causing damage to the lungs. Which seems odd to me considering that ASTHMA is one of its defining features but apparently only 1/3 of CSS patients get lung infiltrates with even less getting bleeding into the lungs and an even smaller amount than that getting lung disease.

Like most other forms of vasculitis, until doctors figured out that "Hey, Prednisone and chemo therapy, when used to together, induces remission!" which means that far fewer patients with vasculitis now die from their disease than before. Previously CSS, like Wegner's, was 100% fatal. It's good to know that we are improving in this area.

That's CSS in a nutshell!

Fat, Sick & Nearly Dead

I know, I know, I said that I would be spotlighting the other 15 forms of vasculitis next, but I have a chronically short attention span (I can blame this on the chemo and Pred right now so those of you that knew me pre-diagnosis can keep all comments to yourself!) and this little tidbit of information caught my eye right now. I will get to the rest, but for now I want to talk about this documentary that was recently a big buzz on the Vasculits forums.

                          This is the extended trailer for the documentary Fat, Sick & Nearly Dead

What made this such a controversy on our boards was someone posting the trailer. This person joined our group, even though they do not have Vasculitis (the two men in the video that made the documentary do) and claimed that he was doing this in order to help support "awareness". Awareness is a BIG issue for those suffering from Vasculitis as these diseases are so rare that most doctors don't know anything about them, we try to get as much awareness out there as we can so that we can hopefully get more research funding and finally end up on the spectrum where we are not more knowledgeable about our diseases or conditions than the doctors are.

Upon further investigation, it was discovered that this man was a stealth marketer, leading our board managers to decide that he really did not care about spreading awareness as he was actually selling the juicer and diet that is featured in this movie. I am not going to say one way or the other about if he cared to help spread awareness, as I do not personally know this man. But I do agree with the decision to ban him and delete his post, he was trying to sell us something. Something that for many members of our group could be dangerous. What he didn't say in his original post was that, the only symptom this man was experiencing at the time was a rash, a rash that probably would have gone away on its own anyways. He did not have life threatening organ involvement like many of the rest of us on the board. The person who posted the video also mentioned, and it is a very prominent tagline for the movie, that Joe Cross (the guy who made the documentary) was able to get off all of his medications through this diet.

The diet consists of 60 days of nothing but fruit and vegetable juice. It works really well to help a person lose weight, but for many of us that have Vasculitis, it is probably not a good idea to go on this long term or to try it at all without a doctors consent and close monitoring. Chemo has the tendency to cause anemia, which can be impacted by the choices in vegetables you would be using, and Prednisone causes diabetes which the fruits can greatly impact as they are full of sugars, natural or not.

Of course, many of the members expressed an interest in the diet and the video. Some had even gone so far as to order the diet already. Who wouldn't want to get off their medications? I know I would! I hate them and I hate what they have done to me. On the other hand, I generally like living so I will continue to take them as prescribed.

Some of the members got mad that the original post was deleted and the original poster banned, but I do think that it was probably a good thing that this was done. This man slid into our group, a place that is safe for us, and tried to market a potentially dangerous product to a group of people that would jump on a "miracle cure". I don't think that there would be many of the board members who would have started the diet without consulting their doctor first, but even if one person took it to heart and jumped at this diet to the detriment of their health it would be one person too many.

Not everything that came from it was bad, though. There has now been a lot of discussion on the topic coming from actual Vasculitis patients. Some of the members have re-posted links to the trailer, which is fine because now it is coming from a place of "Should I try this" or "I am going to discuss this with my doctor and this is what they have said". This has also brought up more conversations of member's diets and what they currently do to help minimize side effects and help their bodies heal. This is a dialogue that is good, I am happy to see it. But I also think that it was good that the original poster was deleted and banned, it made the conversation more of a topic than it would have otherwise. If that makes sense?

If the original post was left intact, then the conversation would have faded out without as many people seeing it. Because some members were angered about the deletion, it brought more controversy and kept the discussions going as people tried to explain the pros and cons. I know the diet is not something I could do, I struggle with iron and B-12 levels already and have my entire life. I need to eat me some meat or I would die.

I haven't seen the documentary yet, it was recommended to me on Netflix a few weeks ago and now that I know more of what it is about I am a little paranoid that Netflix is spying on me. Why should it come up, I don't normally watch documentaries and to send me one that is highly specific towards my own situation.... But that should be left for another rambling and highly paranoid post. A post which I will also probably blame on medication induced brain issues.

Anti-Neutrophragalisticexpialadocious

Anti-Neutrophilic Cytoplasmic Antibodies, better known as ANCA's to those of us with diseases that have them. There are three different types of vasculitis that have these special little antibodies present, in most cases the presence of these are used as a diagnostic tool which helped save me from having a lung biopsy. These little buggers are also known as autoantibodies because they differ from regular, helpful antibodies. Bet you can't guess how they differ exactly.

Auto means self. So these autoantibodies do what regular antibodies do but against the self. Yes, if you have Wegner's, MPA (Microscopic Polyangitis) or Churg-Strauss Vasculitis your body has created antibodies just for the purpose of harming your own personal cells.

Of course, you could also have one of these diseases and not have these autoantibodies present. Is anyone else reminded of the Transformers? Autoantibodies, form up! No, wait, don't! I might die!

There are specific types of ANCAS associated with these different vasculitis types. Wegner's is a C-ANCA (80% of patients test positive. I test slightly positive, sometimes, when I'm not testing positive for a different ANCA). Oddly enough, Wegner's shares this ANCA with mad cow disease. At least, that's what I've heard. Wegner's can also test positive for a P-ANCA, the same ANCA associated with Lupus. Does this mean I'm a Lupy Cow instead of a Mad Cow?

Anways, these are the three types of vasculitis that are associated with ANCA so I figure that it would be a good place to start introducing the other 15 forms of vasculitis. Starting with MPA and then probably Churg-Strauss and moving on from there. I feel it is important to try to understand the different forms of vasculitis as a patient with Wegner's because it is A) possible to have more than one type of vasculitis B) having one autoimmune disorder makes you MORE likely to have another and C) while different, each type of vasculitis have their similarities.

The "D" Word

Which 'D' word is that, you might ask. There are plenty of words that start with a 'D' both lower and upper case, but I am here only referring to one singular 'D' word. And it isn't Damnation or any variation there of.

No, that 'D' word is..... Dating.

It was bound to come up sometime. I am a reasonably undisfigured 24-year-old female, I have every right to think about dating (so do those reasonably and unreasonably disfigured 24-year-olds for that matter. I don't really care, I actually encourage you!).

Alright, dating isn't really easy on most people. It's can be unpleasant and awkward. You might not know what to say, you might make an idiot of yourself and so many things can go wrong in so many places that it might not ever seem worth it to try again. But, as a social animal we do continue to try, somewhat, it's just the way things go.

So, let's just say that prior to diagnosis I was doing fair in the dating department. Even went out with the same guy more than once (which is somewhat of an anomaly in my dating stats) but things didn't work out. It was more me than him, and I partially blame me getting sick for some of it. You see, around the time he wanted to start picking things up, I was starting to feel really crappy (fatigue, chronic hacking cough, aches, pains, a general lack of walking ability. You know, the sort of things every 90 year-old woman should feel.... wait). I didn't really want to go out and do things, he did. There were other things too, but they aren't relevant here.

That's why I find myself currently single. You might tell me that, 24 is still young, but believe me when I tell you that, in the state of Utah I am an old maid. Social state standards estimate that I have maybe one more year before I should pack it up for good and consider myself undateable/unmarriagable. I should have taken care of this before I was out of high school, what was I thinking, wanting to go to college, that's a man's privilege.

Okay, so it's not really that archaic, but only just barely.

If you are anywhere in a similar situation like me, you've probably looked up online about dating with a chronic illness. You probably also found that their information was terrible and no help! Unfortunately, they are right.

Dating with a chronic illness can be a tricky beast. There are some added worries that can sneak in there. Not only should I be questioning what date I should mention my crazy cat collection on, but I am also having to wonder about when it will be appropriate to mention that, oh yeah, I have this little problem.....

Of course, it is entirely possible that this worry can resolve itself, say, if I happen to sneeze on the date or something. Because for me, sneezing usually makes me bleed and I kind of think that's something my date might notice.  I could just say that I have a raging cocaine addiction, but that would open a whole other can of worms. It would also be lying and everyone knows that relationships based on lies never last.

Another thing that a chronically ill person has to consider, depending on if they take medications or not, is when they can go out. I take my pills at night, so I can solve this problem by taking a quick dart into the powder room, that is, if my date drove me. Some medications have stipulations on them that you aren't supposed to drive after taking them, you know, those silly little warnings.

There are also certain activities that I am forced to limit myself too. Long days outside are pretty much out of the question unless I am prepared with sunscreen, an umbrella and better yet, a building to block the suns deadly deadly rays. Fatigue is a big problem too so you have to make sure that you rest up before hand.

It can be hard for the dater, too. You are all expecting fun dates and sometimes this other person just does not want to do anything other than lay about. Sometimes the reaction is to think that this person is lazy, specifically since vasculitis, while debilitating, does not often make a person actually look sick. This is why my illness must be explained, but probably not on the first date. It's a thing that needs to be judged personally. Or maybe tattooed to my forehead, since that would save me a lot of talking.

I decided to attempt dating again, post diagnosis, and that I would decide when to tell whomever it was when it felt right to me. I even went so far as to join one of those dating websites and I got a few hits which were a much needed boost to my self-esteem. One of them even progressed far enough to a date, a coffee date, which I was nervous for. I had so many thoughts in my head: What if we hit it off? When should I tell him about my disease? What if partway through I get sick? Please don't let me eat anything that's going to make me throw-up! What if he wants to go out again? What should I do!?!?!?


None of it mattered, I got stood up. All the anxiety and worry for nothing. Well, nothing except to give me a firmer idea of how I'll handle a future date.

Now, if I were a firm believer in signs, I would have taken the hint, but I am intentionally oblivious to things (note: see the first three posts) so I'm gonna climb back up in that saddle and give it another go!

Politics Leaks in EVERYWHERE

As a person with a newly diagnosed, chronic and currently incurable disease I have had to change some of my perspectives and become more aware of certain issues that previously I probably would not have worried about before. Not many 24 year olds would ever really stop to think about the possibility that they might not be able to work and that they might have to rely on government assistance in order to get by.

Currently, I am still capable of working and I plan on staying that way as long as possible. But the realities of my situation are such that I will more than likely have to go on disability, it's no guarantee, but there is a high possibility that I will not be able to work full time or at all somewhere down the line. Of course, if things in the political arena don't settle down I might have to continue working longer than what my health will allow, either that or become completely dependent upon the kindness of my parents.

From what I have been told by many of my new acquaintances from the Vasculitis Foundation (many of which rely on Social Security and Disability to live) and from what my own snooping about on the intrawebs has found is that, in order to appease the Republican party President Obama put Social Security cuts on the table in order to have a way to bargain for a raise in the debt ceiling.

              In all honesty, he probably explains things better than I and *gasp* he's actually in Washington!

If these cuts were to go through, many of these people will lose any way they had to support themselves. For me, this means that if the time comes where I can no longer work due to my Wegner's then I will not have the option of Social Security or Disability to fall back on.

It saddens me that a program that our citizens pay into so that they can have something, even if it is only a little, to rely on in a time of crisis, is one of the only ways that our President has to bargain with the Republicans. This is not the first time that cuts on Social Security have been used as a bargaining tool and it is always being used in cases where the Republicans are unwillling to work with a Democratic president. I hate the fact that these big time politicians use their citizens' lives, yes, cutting this program would be paramount to executing the people that need it, so flippantly.

For once, can these so called leaders in our country look out for the benefit of the ENTIRE country, not just the richest? Can we not all see that we need to raise the debt ceiling? Can we all not see that it is possible to accomplish this by cutting spending in crap programs? Here's an idea, why don't we close some of the tax loopholes that the richest people in this country take advantage of? Why don't we lower the salaries of the big wigs up in Washington? That would help us get rid of some of our deficit. But no. We have to squeeze the little guy, those people that can't do for themselves, those that need the help the most.

Each time that cuts in Social Security are brought up, it is met with great resistance from the public. One way that you can help resist is by writing your congressman, or senator, or representative. You can also sign this petition http://pol.moveon.org/bad_debt_deal/?rc=bad_debt_deal_letter.fb.v2.g1

Maybe we need to do more than that. Maybe we need to use our powers as the people and vote the whole bunch out. Let's get some people in there who actually want to see life in our country get better for everyone. Remember, the government should fear the power of its public, not the other way around.


In other news, the VF is doing a survey to help improve its website http://vf-survey-july-2011.questionpro.com/ once you complete this survey you can enter to win a years membership to the Vasculitis Foundation or a t-shirt, and who doesn't like t-shirts? If you're a person with one of the 15 types of Vasculitis, a family member or friend of a person, or maybe just that really nosy co-worker or neighbor that looks up odd conditions that their cubicle partner or house next-door-er suffers from. You could even be that person who looks up odd diseases on the internet and then decides that they have them. But the point is, if you've been to the site, take 10-15 minutes to help them improve it.

Side Effects May Include the Following

I might be weird, but I've always been one of those people who read about the drugs they were given by the doctors. To me, it's just common sense. I want to know what I'm going to be doing to myself as I ingest these chemicals.

Reading about (and experiencing) drug side effects has really shown me the truth behind the saying, "Sometimes the cure is worse than the disease".

I already whined about the potential for weight gain that comes from taking Prednisone, but that's just one of the great things that particular drug can do. Osteoporosis seems to be common, it can also cause diabetes, high blood pressure and mood swings.

Anger, rampant horrible anger at small little things swiftly followed by jags of crying that are unconnected to anything going on anywhere. It's almost like someone is playing those sad puppy and kitten commercials with Sarah McLachlin songs on repeat in my head! Now I'm a wibbling mess and there's no real reason for it.

You watch that video and try not to tear up! And support your local SPCA or ASPCA

I guess the good news is, when the mood swing comes back around I can be all happy and perky and filled with sugary sweetness. That is, until something pisses me off again. Rage dinosaur activate!

Prednisone also likes to cause night sweats. Which, because I am on Prednisone, frustrate and anger me. I don't like waking up all sweaty, specially when I know that nothing particularly fun has gone on.

All of these emotional roller coasters really exasperate and tire me out. Of course, this same drug has caused me to be a little hyper sensitive to touch. Hugs hurt, kicking water hurts, seriously, it does, I really don't want a massage. On the other hand, I do want a massage because I hurt so much. It's a viscous cycle.

On the plus side, though, this drug helps keep my swelling down. I feel that it does this by taking the swelling from my important parts, such as my organs and moving it to my stomach and face. That's my excuse for looking like the Stay-Puft Girl, what's yours?

I guess I also have to give the Prednisone some props for keeping me going these past almost 7 months as I tried to come off it and found out that the methotrexate I was taking was not doing enough to suppress my immune system. Now I'm on a new chemo which also has a ton of side effects, but I, and you have probably lost focus for now.

I bet you're still all teary from the commercial up there. It's a sad commercial. 

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!

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: http://whoismyrepresentative.com/  Further Readings:
http://www.genengnews.com/analysis-and-insight/while-advocay-abounds-orphan-drug-development-success-remains-elusive/77899414/
http://rarediseases.about.com/od/isitrare/a/getdiagnosis.htm
http://www.medterms.com/script/main/art.asp?articlekey=11418

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!

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?"
"No..."
"Any trauma?"
"Noooo..."
"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."
"Oh?"
"But all those people had been in fires"
"Huh?"
"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?"
"No."
"Oh."
"Yeah."
"So..."
"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.