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.

31 Days (Facts) of Vasculitis

For this awareness month I thought I'd play a game of sorts.

I am going to list 31 facts about vasculitis and each fact will have a corresponding note card that I am going to leave somewhere in public or hand to someone or what have you! Each note card will have one fact about vasculitis on it and a link to this blog.

I am hoping people will visit and pass the cards along to others and in this way help me raise awareness! 

If you want to play along, write out your own note cards and play the game in your area! Put a link to this blog and take pictures of your cards if your going to play. I hope you will help us in raising awareness for Vasculitis!

1. Vasculitis is an umbrella term for a group of autoimmune disorders that effect a person's blood vessels. From the smallest capillaries to the largest aortas.

2. Vasculitis is treated using drugs that decrease inflammation and weaken the immune system. These drugs include forms of chemotherapy, steroids, and others.

3. Different pea of vasculitis were featured on the tv show 'House' on many different occasions.

4. There are between 14 and 20 different types of vasculitis, each effecting different veins and organs. 

5. Each type of vasculitis involves inflammation of the blood vessels which causes the walls of the vessels to thicken, weaken, scar, and narrow which all work to decrease the amount of blood that is able to circulate.

6.Vasculitis has no cure, it is something a person will never be rid of.

7. The goal of treatment in vasculitis is to put a patient into a quiet state where the disease is not actively attacking the blood vessels.

8.  Patients with vasculitis see a rheumatologist; the same type of doctor people with lupus or rheumatoid arthritis see.

9. Not all rheumatologists know about vasculitis, so it is important for someone with vasculitis to contact an expert in vasculitis.

10. People with vasculitis may not look sick, even when they are experiencing episodes of active disease.

11. Sometimes, diagnosing vasculitis can be extremely difficult. There are no standard blood tests for it and if a biopsy is not done in the exact right spot it may not show signs of vasculitis.

12. Vasculitis is good at mimicking other diseases, making it even harder to diagnose or determine if a patient is having a flare.

13. The treatments for Vasculitis involve large risks to a patient's health as well.

14. Vasculitis can effect anyone of any age, gender, race, economic status, or country.

15. There are a couple of types of vasculitis where the cause is suspected to be an infection or an allergic reaction, but for the most part the cause of vasculitis is unknown.

16. The most common form of vasculitis is Granulomatosis with Polyangiitis (GPA) which mostly effects small and medium sized vessels and arteries in the kidneys, lungs, and upper respiratory tract, though it is not strictly limited to these areas.

17. Vasculitis makes a person more susceptible to blood clots and strokes.

18. Vasculitis makes a person more susceptible to aneurysms.

19. Vasculitis can cause a person to have permanent organ damage.

20. Vasculitis and it's treatments can make a person much more susceptible to infections.

21. Large vessel vasculitides include Giant Cell Aerteritis, Takayasu' s Aerteritis, Kawasaki' s Disease and Polyaerteritis Nodosa.

22. Medium vessel vasculitides include Kawasaki' s Disease, Polyaerteritis Nodosa, Microscopic Polyangiitis (MPA), Granulomatosis with Polyangiitis (GPA), and Eosenophilic Granulomatosis with Polyangiitis (EGPA).

23. Small vessel vasculitides include IgA Vasculitis, Cryoglobulnemia,Leukocytoclastic vasculitis, MPA, GPA, and EGPA.

24. The Vasculitis Foundation is the leading resource for people with vasculitis.

25. The Vasculitis Foundation has a list of vasculitis experts that are willing to consult with doctors about patients for free.

26. The actor/ director Harold Ramis (known for playing Egon in 'The Ghostbusters') passed away due to complications of vasculitis.

27. Because vasculitis is rare, treatments are often taken from research into other types of autoimmune disorders.

28. The 1956 movie 'Bigger Than Life' is about a man diagnosed with Polyaerteritis Nodosa who is given prednisone.

29. The Vasculitis Foundation was supposed to have a billboard shown in the last episode of 'House' but the scene ended up cut.

30. Vasculitis can be deadly if it is not treated correctly.

31. Patients with vasculitis that are receiving proper treatment can live full lives.

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.

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!

Things That Really Grind My Gears

I may have already shared this picture during awareness month, but it works for this post.

When I shared the above meme in some of the vasculitis groups some people commented that we need to give the doctors a break. They study so many other things that the less than a day on average devoted to rare diseases is really all they can fit in.

I understand that. Being a recent college graduate (Bachelor's level, not post graduate level) I get that there is a lot of stuff that goes into being a student and there is no possible way for a person to learn everything about every disease out there. So then why is it that doctors have to fake that they do?

I don't know how many times, how many patient stories I've heard that boil down to: My doctor had no idea about vasculitis but decided to fake it. Or the ever present: My doctor had no idea about vasculitis so they refused to answer any questions about it and instead left me to the less than capable hands of doctor google to try and figure out what to expect. These situations are not right, they should not be happening!

Don't even get me started on the doctors that decide to pretend to be experts just so they can dismiss your symptoms as things that are unconnected to your disease

.

Everyone and their dog seems to know the amount of work that goes into being a doctor, everyone knows that doctors are also human (unless you're going to some futuristic robot doctor) and that there are going to be things they have no idea about. I think that knowing these things means that most people aren't going to have their brains melt down if a doctor says that they aren't sure about this specific disease so they will have to look some things up or will find an expert to send you to. Or maybe a lot of people will have a brain melt down if this happens because doctors aren't known for doing this.

Is it really that much to ask for doctors that are willing to be seen as not an expert in everything that comes to medicine?

I know there are doctors that don't do these things and they are to be treasured. My gp was like this. He only had a vague idea about vasculitis and that it was similar to lupus so you know what he did? He listened to me as to what symptoms I was experiencing and he was not afraid to talk to the other doctors I see that DO know about vasculitis. He would refer me to them if something was out of his scope, but he would do what he could to make sure I knew where about my health stood rather than sending me home to doctor google.

Error 404 Vein not Found

I know this is so passe and last year, but I had to make one

I had to make this when I got home from my Rituxan infusion today, it was nice to have an oncology nurse that had actually heard about Wegener's and knew my rhuematologist.

On the other hand, this had been around a while so when she expressed some puzzlement over what was going on with my veins and IV that it had to make me laugh.

For once I had a relatively easy IV placement. She went in through the side of my arm just below my wrist, she got the catheter in on the first try and it seemed that the vein was going to take the entire catheter rather than just the very tippy end of the catheter like it usually does. Then when she checked the IV with saline it started to burn a little. I didn't think anything of it, except that sometimes the saline burns. When she put the steroid in the IV it really started to hurt so I asked her to check it again to make sure that the IV hadn't infiltrated. She un-bandaged the IV and everything looked okay so she decided to put more saline through it.

At this time, for some reason, I feel like I am about ready to pass out. Everything has gone down to a pinpoint, I'm starting to get a little sweaty, and shaky feeling. Not something that has ever happened to me when I've had other IV's (which has happened often enough I should know how I normally react) placed.

The nurse looks up from the IV site and says, "I've never seen one do that before." I was expecting a lump or some other signs of infiltration but she said there was nothing like that, but every time she would depress the plunger on the saline my entire arm from my wrist to my elbow would blanch.

We ended up backing the IV out a bit and everything worked better after that. We're not sure why it happened, but it's always interesting when you can show long time oncology nurses things that they've never seen before.

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.