Wednesday, November 30, 2011

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.

Tuesday, November 22, 2011

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.

Sunday, November 20, 2011

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.

Friday, November 18, 2011

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!

Wednesday, November 16, 2011

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) 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!

Tuesday, November 15, 2011

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.

Monday, November 7, 2011

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. (

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.