Petition

https://www.change.org/p/president-of-the-united-states-has-your-identity-been-trademarked-disability-for-sale?recruiter=5571818&utm_source=petitions_show_components_action_panel_wrapper&utm_medium=copylink

Hey all, I was recently made aware of a group moving to trademark the term "invisible disability" and are preparing to sue people that use the term. This is very similar to how SGK will sue any group that uses the term "the cure" in their slogan.
As you can imagine this is bad for small support groups who are just trying to help people.

The Reason for Awareness Month

I meant to make this post yesterday, but forgot.

Vasculitis Awareness Month is over for another year and I think my game went pretty well. I got lots of new visits to my blog and spoke about vasculitis to many different people!

One really amazing thing happened this month, as well. I had my Rituxan infusions and during the first one I gave my infusion nurse one of the cards I had written out as she asked me what I was doing the infusions for. When I told her that I had vasculitis she told me that she, also, had a type of vasculitis! It was one that I had never heard of before and she told me that for over a year her doctors had been treating it like it was an infection until someone figured it out!

Between patients she was checking out my blog and followed a link to the Vasculitis Foundation where she read the story of someone else whom had the same type of vasculitis she had!

Situations like that are the reason for Awareness Month! And I am so glad that she was able to read about someone else that was dealing with the same thing she was!

Happy Holidays!

Still working on that surprise. I'm not sure when exactly it will be finished but I will let you know!

In other news, I braved a blizzard to make my way up to my rhuematologist's new office for my appointment on Monday. I was just glad my sister was able to drive me and that we took my Subaru!

A bunch of these were on the freeway!

This was a pretty good appointment, my kidneys beans and liver are struggling some, but they could be worse. I'm not gonna complain about that! 

I also now get to break in a new nursing staff since the large hospital my rhuemy now works for does not have vampires experienced in rheumatological diseases. I'm sure they actually do, but the office he was at this day did not. I had to go with regular internist nurses who struggled a bit. It left my hands looking like I've been fist fighting.

Well, that's my quick update. I hope you all have a wonderful holiday season no matter what you celebrate!

Also, I'm typing this from my phone and it won't let me change the paragraph orientation. So sorry about that.

News!

Sorry I haven't posted much lately. I've been working on something that's kind of important to me and if you've been following and enjoy my blog you will be excited about it too! But I'm not going to say anything other than what I've already said here until I get everything all worked out!

I hope you all stick with me and can be patient for a bit!

Have a happy holiday season and take things easy!

Viral Awareness

There are so many things going on right now in terms of invisible illness, autoimmune awareness! They are simple things, too. While they might not seem like much to people without an invisible illness but anything we can do to help other people learn about our struggles can do so much.
One of my biggest hopes is for someone to see a post that mentions a rare or invisible disease and for them to look up something about it. I say this a lot, but, the more people know about these diseases the easier it is for people that have them to get treated!

Vasculitis Aesthetic

When you don't have to do smokey eye make-up because the dark circles around them have got that covered for you.

Your clothes become less of a fashion statement than a comfort statement.

You try to see if the phlebotomists have tape that at least sort of matches your outfit.

You have perfected the hospital bed selfie.

That lost look you have on your face when you've forgotten what it is that you were doing for the third time in a row.

Tired. Tired can be an aesthetic. You are unintentionally mimicking that super hot, just rolled out of bed and don't care look that's so popular with college students.... or maybe it's just that those college students are just as tired as you are.


Edit:

This was just shared to me and I think everyone with vasculitis should see and read it. What we have is chronic. It will never go away. We have the right to be frustrated, stressed, worried, and to have our voices heard. We may bottle these emotions up, or we may end up taking them out on the nearest available target. But we are only human. I know many of us feel like we are just spinning our wheels when it comes to life after diagnosis, but it's not true. Every step you take when it comes to your disease, every doctor you visit, every specialist you educate paves the way and makes it easier for those who come behind you.

It's a hard, unfair, road to have to take, but you  are taking it and you are doing a good job! So keep going!

Nobody Nose

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

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

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

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

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

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

Oils are no Substitute for Actual Medicine

Sorry for not making a post yesterday. It was my mom's birthday and I never really got the chance to sit down and write so I will post the two memes that I ended up posting yesterday and the meme that is for today!

He was so cute I had to post two of him!

Okay, now for today's post I wanted to talk a little bit about something that actually happened to a friend of mine that has vasculitis that attacked her kidneys resulting in her needing a new one. She started a facebook page to help her achieve this goal and is using it to document her journey through dialysis and on.

Naturally, a public facebook page is going to get all sorts of people that comment on it, but one person left me floored by their response to one of her posts. They actually told her that they had some oils that would take care of her. Now, I don't know if they were just saying that the oils might help alleviate some pain or if they were actually telling her that instead of a new kidney she should just take some Frankincense.

The sad thing is, while a healthy person might that a suggestion that an oil would work as a cure for us is so silly that no one would do it, but you would be wrong about that. I know many people with chronic illnesses post about their experiences, I know I have posted about my experiences with having people tell me about the so called "miracle cures" they know of. These suggestions are so common there's a square for it on the chronic illness BINGO card.

While I understand that the people that make such suggestions are coming from a place of love and aren't trying to be terrible, the truth of the matter is, they are. When you suggest alternative treatments to a person when they aren't asking for or about them you are derailing what the person is saying about their medical treatment.

When people give me these suggestions I tend to hear one of two things. This,
                        "I am not a medical doctor, nor have I any experience in or with the medical field aside from going in sometimes when I have a cold but I know better than you and a doctor because I scraped my knee once and this stuff worked on it so it can obviously work for everything else out there 100% of the time."

or

                         "I am not a medical doctor, nor have I any experience in or with the medical field aside from going in sometimes when I have a cold but I know better than you or a doctor because I believe in all sorts of conspiracy theories including the idea that medical science is actually a business and they want you to have to keep paying them for services. BIGPHARMABIGPHARMABIGPHARMA!"

But at least the first one is coming from a place of love: it worked for them, or at least they thought it worked for them, so it will work for you too. I'm not sure where the other one is coming from, maybe love that took a detour on the fear bus into conspiracy theory town.

The problem is, these statements do harm. They work to try and convince people that they don't have to listen to their doctors. If you have any sort of chronic illness it can become tiresome to take all the medications and do what you need to do to stay healthy; so depending on when someone makes these sorts of suggestions to you it can be really tempting to try it. You are telling us that we should take our hope away from what has been proven to work and place it in an unverified, untested long shot. You are also essentially telling us that we don't know what we're talking about when it comes to our illness and that you, who have no experience with it and more than likely know next to nothing about it, know better than we do. Seriously. Just stop making these suggestions unless you have specifically been asked about some supplement!

The incidence with my friend, though, that lead to the creation of today's Vasculitis Awareness Meme!

A Summary of Sorts

If you're reading my blog you're probably aware that what I have is a disease where my immune system has mistaken my blood vessels as foreign invaders in my body. You probably also know that it sucks.

Vasculitis is a group of diseases that all involve the immune system doing this. In some cases the immune system tends to decide that it has a favorite type of blood vessel that it likes to attack. Sometimes these are the large arteries and in other diseases the immune system decides to go for the smallest capillaries. The type that I have sits right in the middle and goes for everything from the capillaries up to the small arteries. So, it won't go for things like my aorta, but it will go for the artery that attaches to my kidneys. It will also go for all the smaller vessels down to the capillaries.

I was never really given a specific diagnosis; they know it's vasculitis, and they know it's one of the three that are ANCA associated, but because I didn't have a biopsy they can't get anymore specific than that. .My doctors and I have decided to lean more towards Granulomatosis with Polyangiitis because that's more in line with the symptoms I've shown, but the ANCA I show is the one that leans more towards Microscopic Polyangiitis.

Hey, in one post you've now pretty much caught up the main summary of my blog! Congratulations!

Awareness Month

May is a lot of things. It's warm, school children are getting excited as the summer vacation gets closer, Mother's Day (at least in the US), The Avenger's: Age of Ultron is finally in theaters, allergies are running rampant, and of course Lupus Awareness Month.

But May is also awareness month for a less known relative of Lupus.

Do I really have to ask you all to guess? Cause the answer is going to appear in a meme picture I put together.

I'll wait while you save it..... Seriously, don't stop. Save the picture. I mean, sharing this post would work too I guess but I can't guarantee that the picture will show up big and bold. 

 I'll share other meme's I make throughout the month here and you are welcome, nay, encouraged to share them! After all, that's what an awareness month is about, isn't it? You don't even have to link back to my blog if you don't want to. You don't even have to have Vasculitis to share these memes either, it's not like there's a button somewhere that checks to see if you have it. If there were I would try to disable it even though I probably wouldn't be successful at it because I am not as internet savvy as I pretend to be.

Seriously, I would like to see these memes shared as far and wide as possible! The more people that are aware of Vasculitis the better it is for us!

Medical Science

I'm pretty frustrated with the state of medical science in relation to Vasculitis. There is a girl out there, fighting for her life right now in an ICU because her doctors did not know enough about the protocol for treating Vasculitis that they put her in a coma.

Imuran wasn't working so they switched her to methotrexate which she was only on for 6 weeks before they decided to take her off and give her Mercaptopurine. This form of chemo is not even approved for treatment of Vasculitis, unlike Rituxan which is the most obvious choice and the current go to drug for ANCA assoiciated Vasculitis. 

Now, the big warning on Mercaptopurine is this
 "Mercaptopurine is a potent drug. It should not be used unless a diagnosis of acute lymphatic leukemia has been adequately established and the responsible physician is experienced with the risks of Mercaptopurine and knowledgeable in assessing response to chemotherapy." (http://www.drugs.com/pro/mercaptopurine.html) 

Because they didn't even apparently know about Rituxan I am pretty sure that her doctors were not knowledgeable about any form of chemotherapy. 

This is why education and awareness is so important.

A Letter

Dear Mitt Romney,

In your quest to obtain the presidential election bid this year you have said some things that have made people feel you are out of touch with the everyday struggles of all but a small number of upper class citizens. I have largely agreed with these criticisms, but it wasn't until I thought about one specific thing you said that I really stood up and took offense.

You said something to the effect of 'if you need money you should go ask your parents for help'

Now, I'm sure you can spin this however you want, and that you intended it to mean money to help start a business, but when I applied the basic principle of asking my parents for money for help to my own situation I realized you have pretty much told me that my life is not valuable enough for my government to help keep me from dying.

You see, while I was busy working to pay my way though college, or at least to pay for what wasn't covered by a near full ride scholarship and student loans, working away to better myself and open avenues for a good future where I could be a success I was dying. I don't mean in the spiritual. starving my soul kind of dying because I was working towards a goal where I would be helping others for a living and that's where I feel success lies. No, I was fighting a war against myself, my own immune system was and still is waging an attack on every blood vessel in my body, from the large arteries to the small capillaries.

This is something you should be able to sympathize with as I understand your wife also suffers from an autoimmune disorder.

Completely unaware of what was going on inside me, I graduated college and began work teaching under privileged kids at a Title I public school.

Within a few months of working I was near dead.

I had attributed my symptoms first, to being at college, and environment where many people are not able to go to the doctors and germs are spread readily. Then I convinced myself that I was sick because I was teaching young children. By December my lungs were hemorrhaging, I could hardly walk, and the only reason my kidneys were not considered to be in failure was because the waste being dumped into my system had not yet appeared in my blood work, which came as a shock to my doctors.

This is how, at the age of 24, I was diagnosed with the rare disease Granulomatosis with Polyangiits formerly know as Wegener's Granulomatosis. A relative of Lupus, MS, asthma, Chrones Disease, and a mirade of other autoimmune disorders.

I managed to finish out the school year taking highly toxic medications everyday, but was, regrettably, not healthy enough to return after summer break. I was lucky in that I had been living with my parents while I saved money to find my own place and they continued to allow me to live under their roof while I spent all of my savings on monthly doctors visits, prescriptions, ER visits, and surgeries.

This was all while I was still on my parents' insurance.

Here is where I get to my reasoning that you have told me I should resign myself to die.

I will run out of insurance in the next few months. I was very lucky that President Obama's health care reform at least was able to let me stay insured until I was 26 years old. You know, the health care reform that was based on the model you created for Massachusetts; the one that would have given me a low cost government insurance option that I could afford had you not helped to block it?

At 26, in November, actually, the same month I will not be voting for you, I will become uninsured on top of being unemployed. I have tried Social Security but, funny thing, they say I am too young and too highly educated to be disabled so I have to wait another 12-16 months so that I may plead my case in front of a judge.

Until then, I get to figure out how to come up with $11,000 a year to pay for my life. This figure is only an estimate and does not include any surgeries, ER visits, antibiotics, hospital stays, x-rays, scans, and labwork that often tag every year for someone who is immunocompromised, is taking highly toxic medications daily, and has a mirade of other complications stemming from such.

My parents are currently helping me, they cannot afford to help me cover this sum, either. Unless you are willing to chip in and help Mr. Romney by coming up with better programs or become willing to put your money where your mouth is, I am stuck between a rock and a wall of knives. Left untreated, my disease has a life expectancy of five months or less once symptoms start showing. In this case, death is a painful process of going through multiple organ failures at the same time.

This is a reality that many, many citizens of the United States are facing right now.

Your thoughtless words lead me to believe that you are not just ignorant of the struggles faced by most Americans, you are dangerously out of touch. I need a leader who realizes very few people have the luxury of turning to a vast family fortune when money is needed. I need a leader who knows that, for most of us, one paycheck is standing between having a home and being put out on the street. One missed paycheck is all it would take to destroy a family and send people to their graves.

You are not that leader.

My life is not a privilege, it is a right and who are you to determine my worthiness based upon my family fortunes?

Saying so Long to Dr. House

Alright, I know I've been a little dismissive of House in the past. Very often when they have included vasculitis in the episode there are many things that are wrong or are inaccurate. While this aspect is harmful to those of us with vasculitis because normal doctors do not exist in a vacuum and many of them, whether they want to admit it or not, watch medical dramas and are as likely as the rest of us to believe what they see on the tv.

On the other hand, House has done some good for vasculitis. They are the only show I am aware of that has consistently mentioned it and in their own way have brought the term to the outside. They have shown that, much like Lupus, vasculitis can mimic any disease and is something serious and should be taken seriously. I know of one person who realized how serious their condition was because they heard it mentioned on House. I have a friend who has noted how many times vasculitis is mentioned on the show. It's in his consciousness.

After many years, House is now coming to an end. The final episode is tonight so stay tuned and keep an eye out for billboards that mention the Vasculitis Foundation. Yes, the crew of House has contacted the vasculitis foundation so that in their last episode they can do one more thing to help spread the word about this group of rare diseases. Fitting that it should happen during awareness month!

Vasculitis Awareness Month!

It's that month of the year again! Vasculitis Awareness Month, or May as normal people call it.

Look guys, I'm internet famous for vasculitis. Not exactly what I was planning on, but hey. Someone even asked me if they could put my video in a documentary about vasculitis. I said sure even though I think I look and sound like a complete goob in it.

Sorry if I didn't look like what you thought I did. When I made this video I didn't have plans on it being posted anywhere, but since the VF put it on youtube I figured, "What the hey- People are gonna see it now."

Celebrations, Little Birdies and a Football!

For my first post of the new year I've got excellent news! News that I meant to post a while back and just kept forgetting. I will blame my forgetfulness on the prednisone, because it is my go to scape goat for everything.

For starters the tweeting thing, yup, we totally won! The Vasculitis Foundation will be featured on Broadcause during the week of February 13th through the 19th! The link is to our page on Braodcause where you can find information and donate and what have you. I want to thank everyone that voted/tweeted (specifically all those people I cajoled, bribed, blackmailed, and threatened into it. Not really, I don't do those things.) In other twitter news, my twitter has not become an awareness platform, but a random soundbite platform for my random typings.

The other great news is that, for the first time in over a year, my bloodwork came back all in normal ranges! They are going to let me drop my prednisone to 5 mg a day if I am feeling okay in a few weeks! I am circling ever so closer to a period of quiet or remission or whatever terminology you wish to use. They don't know what I'm doing right, but they want me to stay my course. Which probably means I still can't go back to work for a while yet.

During my next visit in February they are going to decide if I need to continue coming back every month or if we can move out my appointments to longer increments!

I am also aware that some people might not like the Denver Broncos, or Tim Tebow. I don't really follow football so I couldn't tell you anything about the guy. I only bring him up because, as part of the Make a Wish Foundation he spent some time before one of his games with a young 16 year old girl who suffers from Wegener's like I do. She has been diagnosed for several years and has undergone over 70 surgeries. She has had one lung removed and exhibits the "saddle nose" deformity common in the disease. She is still a beautiful girl, though, and no matter how much she has gone through the pictures of her with her family as she is meeting Tim Tebow show a girl full of life and ready to face the challenges she has been given. I can only hope that I can face my future with as much grace as she appears to. 

The press tracking Tebow as he is a star have shed some light on Wegener's and the problems that patients can face.

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!

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.

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.

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!!!!!