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!
Showing posts with label vasculitis awareness. Show all posts
Showing posts with label vasculitis awareness. Show all posts
Thursday, June 2, 2016
Sunday, May 1, 2016
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.
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.
Monday, January 4, 2016
Happy New Year!
I hope everyone is having a nice new year so far! I haven't done much. I know I keep harping about a surprise, but to be truthful I haven't had time to work on it all December!
Now that the new year has begun it's time to get back to work!
In other news, this whole hospital change my rhuematologist made has been such a pain. I've been trying to get three prescriptions filled for over two weeks now. I've been out of them for that long (I did get an emergency supply from the pharmacy but have been out of that for two weeks). The pharmacy hasn't heard anything back from my doctor.
I called his office today and after waiting on hold for 15 minutes I finally get to talk to the receptionist lady who asks me what the problem is. I tell her I have been out of several prescriptions for two weeks and the pharmacy is saying that they are waiting on confirmation from my doctor. I wanted to know what the hold up was.
Apparently, no one in his new office thought to even let him know I had been trying to contact him and the pharmacy had been faxing for refills! Two weeks! Two weeks all of this stuff has been with the office and the front end staff have been ignoring it. All I could get from her is that she would put an alert on the paperwork that says it's urgent.
So I still get to wait. In the mean time I'm stuck suffering from headaches and withdrawal/shock symptoms from the anxiety med that I have been out of. It's not the type of drug that you can just stop and I have essentially been forced to do just that. And I've had to struggle along without having pain medication which is really cutting down on my sleep which just makes the anxiety that much worse!
I am not pleased with his new office staff. I miss the days where I knew all of the staff by name and knew that they would do just about anything to help and would stay on top of things.
I guess that's what happens when you go from a small, private office to a big University hospital.
Now that the new year has begun it's time to get back to work!
In other news, this whole hospital change my rhuematologist made has been such a pain. I've been trying to get three prescriptions filled for over two weeks now. I've been out of them for that long (I did get an emergency supply from the pharmacy but have been out of that for two weeks). The pharmacy hasn't heard anything back from my doctor.
I called his office today and after waiting on hold for 15 minutes I finally get to talk to the receptionist lady who asks me what the problem is. I tell her I have been out of several prescriptions for two weeks and the pharmacy is saying that they are waiting on confirmation from my doctor. I wanted to know what the hold up was.
Apparently, no one in his new office thought to even let him know I had been trying to contact him and the pharmacy had been faxing for refills! Two weeks! Two weeks all of this stuff has been with the office and the front end staff have been ignoring it. All I could get from her is that she would put an alert on the paperwork that says it's urgent.
So I still get to wait. In the mean time I'm stuck suffering from headaches and withdrawal/shock symptoms from the anxiety med that I have been out of. It's not the type of drug that you can just stop and I have essentially been forced to do just that. And I've had to struggle along without having pain medication which is really cutting down on my sleep which just makes the anxiety that much worse!
I am not pleased with his new office staff. I miss the days where I knew all of the staff by name and knew that they would do just about anything to help and would stay on top of things.
I guess that's what happens when you go from a small, private office to a big University hospital.
Tuesday, November 3, 2015
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!
I hope you all stick with me and can be patient for a bit!
Have a happy holiday season and take things easy!
Tuesday, August 25, 2015
Just a Little Reminder
I know it seems like it will never come, that you will always be stuck in the same place. But remember those terrible platitudes people are fond of saying; Rome wasn't built in a day, the caterpillar has to take some time being a chrysalis before it becomes a butterfly, and it can't rain all the time, etc.
If you just keep persevering, things can get better. Your life may have turned out different than you thought so you just need to keep going. Even if it hasn't turned out exactly the way you wanted, doesn't that just make it all the more enticing to see how things will turn out?
Keep pushing for remission(s), keep pushing to realize your dreams, keep pushing through whatever crap has you bogged down so you can see what comes next.
Oh, and here's another platitude for you: You've survived 100% of your worst days so far!
Tuesday, June 23, 2015
Things That Really Grind My Gears
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| 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!
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| 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.
Saturday, June 13, 2015
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!
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!
Tuesday, May 19, 2015
It's the Brain Foggiest
You
know it's a high brain fog/ exhausted day when you stand outside your
front door for five minutes trying to use the key fob that unlocks your
car to unlock your front door. At least I was hitting the unlock button I
guess.... Hope this makes you all laugh, cause I am.
#VasculitisAwareness
#VasculitisAwareness
Tuesday, May 5, 2015
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!
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!
 | |
| He was so cute I had to post two of him! |
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!
Sunday, May 3, 2015
Vasculitis: The Life, The Legacy, And So Much Netflix Watching I Could Barf
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| Seriously, I think Patrick is on to something here..... |
So, today is day three of Vasculitis Awareness Month and I wanted to maybe let you in on how the typical day for me goes.
For starters, I wake up. Most people do this activity, so, so far so good! Not much different from a normal person. It always takes me anywhere from a few minutes to a half hour to actually make it to the "getting out of bed" stage of my day. I know a lot of people are this way, but not all, so I'm going to count this as another tick in the "still normal" box.
Now here's where things get a little iffy. Some days I am super stiff so getting dressed poses some issues. I know a lot of people with vasculitis that take these days to stay in their pajamas but not me. Oh no. I'm too stubborn for that; besides, I might need to go outside and nobody wants to see me in my pajamas. Nobody.
Stiff days means that I gravitate towards shoes that I can simply slide on so I don't have to do as much bending. It also means that I tend towards wearing whatever clothes are in easy reach. This has lead to some interesting wardrobe choices on my part.
Before I can face the day, I have some pills to take and inhalers to puff. I try to remember to take a pain pill (even though they don't do much but soften the pain a little bit) because if I don't the constant pain will trundle up higher and higher until I can no longer ignore it.
When I finally struggle out of my bedroom I have to take a rest for a minute so that I can get up and feed my dogs. Fatigue is one of my biggest problems, so sometimes tasks that should be easy can take me forever.
What they don't tell you about fatigue is, it's more than just being physically tired. It also encompasses mental and emotional tiredness as well. Just know that my klutz factor has been ramped up to 800. I'm not joking. In the last two days I've managed to shut my arm in a sliding glass door (the whole thing, not just a little pinch of the skin). If I had been in a horror movie that door would have chopped through my forearm and I would be typing this to you one handed. Then, I smacked the same arm, in about the same part, on the door knob of a restaurant bathroom and now I have a lump.
I trip a lot, and sometimes when I'm having a conversation with someone my mind just stops.The words just run out and I can no longer brain. Much of my communication has devolved into grunts, stutters, and pointing at "the thing". I also heavily rely on whomever it is that I'm talking with to have superior detective skills.
Most of the day this isn't a problem because everyone else in my house works and I'm the only one home. Makes communication easy, but there are other struggles that arise because no one else is around to check out what I'm doing.
Many a soup can has been lost because I read the word Tomato. Double checked and could swear it still said Tomato; but then upon opening the can discovered that it was, in fact, Chicken Noodle. By this time the label has already changed back to say Chicken Noodle because labels are tricksy things and they don't always say what you thought they did. There are also many cases where I put something in the microwave leave the kitchen and then have a freak out because I left a metal fork or something on the plate (thankfully, so far none of these freak outs have been for an actual reason as the fork is smart enough to not be on the plate when I open the door). There was also that time I put my pizza rolls in the microwave for ten minutes because I swear that's what the directions said and ended up with tiny little pizza briquets. It was a sad day indeed.
When the weather's nice enough I like to sit outside with my pups for at least 20 minutes. This only happens if I can find shade to sit in. No shade = no sit. I burn just like my poor dead pizza rolls of not so long ago.
I try to read on the days I'm braining enough to understand what it is telling me on the pages. Sometimes I like to play those new fangled computer games. My life seems so much better when I can create a family in The Sims and become their sometimes generous sometimes terrible god.
I have also attempted to take up many different types of crafts but the only one that seems to have stuck is making scarves with a loom. Crocheting and I chose to see other people. I also like to talk with other people that have vasculitis online because the internet is amazing and it's always nice to talk to people that get it!
For those days that I just can't make it out of my chair, though, I have Netflix. Or maybe I should say that Netflix has me. I have seen so many things there, some of them great, some of them good, many of them leave me wanting for those precious moments of my life back.
Lately, I have taken it upon myself to start going for a walk around my block at least once a day. I don't like being stationary and long to be able to go out to work, but for now a short jaunt will have to suffice. Eventually I'm hoping to extend these walks further, but for now it's good.
On the days that I'm feeling particularly brave I will head out to a store to walk around. Unfortunately, I may get followed by loss prevention because I dress like a hobo.
Many of my fellow vascies take naps during the day, but I try not to so I can sleep better at night.
Written out like this it seems like I do hardly anything. I'm sure I've missed a lot. This is a very brief summary. It also doesn't include the days of doctor's and clinic appointments which are an entirely different species of animal.
I also don't think I've done a very good job of showing what the fatigue and brain fog is like, but hopefully you get the idea.
Saturday, May 2, 2015
A Summary of Sorts
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!
Friday, May 1, 2015
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 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!
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!
Sunday, February 1, 2015
Sleeping is the Best!
Watching my dogs laze about made me think that it would be nice to live their lives, and then I realized that, my life isn't that much different from theirs at the moment.
I sleep, get people to make me food, and do my best to take care of myself. My sister told me that all I need now is a food bowl with my name on it. Thanks for that.
I've got to make light where I can, personally I think that little anecdote up there is kind of humorous and people that aren't chronically ill are probably thinking that it would be nice to spend their time like I just said I do. But they are only seeing that part.
What I haven't mentioned is that the reason my life seems so relaxing and ideal is because I don't have the energy to do much of anything else. Even things that I really want to do.
This past few days was Fan X, a local Comic Convention here in SLC that takes place in January and I had to miss it. I would have loved to go, I love these conventions, seeing the costumes and interacting with other fans.
There were two reasons I could not go, though. The first being that due to people deciding not to vaccinate their children there has been a measles outbreak in my state. Measles and being on immunosuppressants don't mix. So thanks all you anti vaxers for being unaware of how your choices effect everyone else.
Secondly, even if there hadn't been a measles outbreak I wouldn't have been able to go because I did not have the energy to get out of bed at all this past week. I'm pretty sure that my kidneys are failing again. I have all of the symptoms. I tried to get in contact with my rhuematologist but only managed to get their less than stellar answering service who tells me I have to call back when I tell them I want to leave a message, because taking messages isn't something that answering services are supposed to do or anything.
Hopefully soon I will be able to get my infusions going again so that I can start feeling better. But until then, I will live like my puppies and only worry about sleeping and taking care of myself.
Thanks for reading this ramble.
I sleep, get people to make me food, and do my best to take care of myself. My sister told me that all I need now is a food bowl with my name on it. Thanks for that.
I've got to make light where I can, personally I think that little anecdote up there is kind of humorous and people that aren't chronically ill are probably thinking that it would be nice to spend their time like I just said I do. But they are only seeing that part.
What I haven't mentioned is that the reason my life seems so relaxing and ideal is because I don't have the energy to do much of anything else. Even things that I really want to do.
This past few days was Fan X, a local Comic Convention here in SLC that takes place in January and I had to miss it. I would have loved to go, I love these conventions, seeing the costumes and interacting with other fans.
There were two reasons I could not go, though. The first being that due to people deciding not to vaccinate their children there has been a measles outbreak in my state. Measles and being on immunosuppressants don't mix. So thanks all you anti vaxers for being unaware of how your choices effect everyone else.
Secondly, even if there hadn't been a measles outbreak I wouldn't have been able to go because I did not have the energy to get out of bed at all this past week. I'm pretty sure that my kidneys are failing again. I have all of the symptoms. I tried to get in contact with my rhuematologist but only managed to get their less than stellar answering service who tells me I have to call back when I tell them I want to leave a message, because taking messages isn't something that answering services are supposed to do or anything.
Hopefully soon I will be able to get my infusions going again so that I can start feeling better. But until then, I will live like my puppies and only worry about sleeping and taking care of myself.
Thanks for reading this ramble.
Wednesday, January 7, 2015
A Friend in Need
This is a call out for help for this young man, he is a friend of mine, I met him through the vasculitis support groups on facebook and he has been through a lot.
His name is JJ and he has Granulomatosis with Polyangiitis (Wegener's) like me that has really messed up his lungs. On average, he has one surgery per month just to help him clear out the gunk that accumulates in his lungs so that he can breath. It is impossible for him to keep living this way, but he cannot afford to make the trip to see the expert that he needs to that could really help him. He spent last year's holidays in the hospital and this year he had to spend the holidays sick in bed instead of with his young son and family.
I know that money is tight for many people, but even if you could share the link to his donate page on facebook or wherever it would be wonderful.
https://www.medgift.com/JjJordansSupportPage
His name is JJ and he has Granulomatosis with Polyangiitis (Wegener's) like me that has really messed up his lungs. On average, he has one surgery per month just to help him clear out the gunk that accumulates in his lungs so that he can breath. It is impossible for him to keep living this way, but he cannot afford to make the trip to see the expert that he needs to that could really help him. He spent last year's holidays in the hospital and this year he had to spend the holidays sick in bed instead of with his young son and family.
I know that money is tight for many people, but even if you could share the link to his donate page on facebook or wherever it would be wonderful.
https://www.medgift.com/JjJordansSupportPage
Monday, August 5, 2013
Random Health Advice From a Booth at the Farmer's Market
This is kind of a funny story, if only because it's become such a common experience for me that it's sad.
On Saturday, my mom, grandmother, and I decided to wander around the local Farmer's Market just to scout out the local goods. Besides all of the usual home baked goods, hand crafted items, and vegetables there was a booth advertising free nerve scans. I was kind of curious so as my mom and grandmother looked at the booth next door which had some really amazing handmade jewelry I would have myself a nerve scan.
To start off, the had me fill in a paper with lists of ailments that you were supposed to circle if you had them. I had all of them, as expected for someone with a systemic autoimmune disorder. Wherein the lady running the booth told me that she just wouldn't live with all those problems. I told her, I don't either. That's what I see doctors for and what I take medications for, duh.
They asked me what exactly it is that I have and I told them Wegener's Granulomatosis. Now, I'm used to the very blank stares that this disease gets, but for this lady her blank stare was immediately followed by a determined look because she figured that what she was promoting could absolutely cure me.
She put the wand up to my neck and began the scan, which, as I expected, lit up like some demented form of Christmas Tree. You know, when you don't have decent veins things get kind of starved for essentials. After looking at the scan the lady then starts spouting off about how they can do back adjustments to fix all of my problems because pinched nerves were probably what was causing the Wegener's. All I could think was, did you miss the part where I said it was an autoimmune disorder, you know, kind of like Lupus. You're back adjustment is not going to cure something that has a genetic component. She wanted me to go in to her clinic and get X-rays and all sorts of weird stuff.
I never even saw a sign on her booth advertising her as a chiropractor or anything of the sort. I politely told her that I would have to think about it, even though I have no plans to call her back or answer the phone if she calls me.
Sadly, this is a common occurrence when you have a chronic illness. Everyone seems to think they can "cure" you and they tend to ignore the whole part about it being a CHRONIC illness. I'm not against alternative methods, but if you choose to look into them, you really need to have a critical eye. Be wary of the people that claim to have a cure; more than likely they do not and are just trying to get money from you. They probably don't care that they could potentially be causing you damage or even killing you. If you have a doctor that you trust, which is an absolute must, bring anything you want to try in regards to your health up with them.
On Saturday, my mom, grandmother, and I decided to wander around the local Farmer's Market just to scout out the local goods. Besides all of the usual home baked goods, hand crafted items, and vegetables there was a booth advertising free nerve scans. I was kind of curious so as my mom and grandmother looked at the booth next door which had some really amazing handmade jewelry I would have myself a nerve scan.
To start off, the had me fill in a paper with lists of ailments that you were supposed to circle if you had them. I had all of them, as expected for someone with a systemic autoimmune disorder. Wherein the lady running the booth told me that she just wouldn't live with all those problems. I told her, I don't either. That's what I see doctors for and what I take medications for, duh.
They asked me what exactly it is that I have and I told them Wegener's Granulomatosis. Now, I'm used to the very blank stares that this disease gets, but for this lady her blank stare was immediately followed by a determined look because she figured that what she was promoting could absolutely cure me.
She put the wand up to my neck and began the scan, which, as I expected, lit up like some demented form of Christmas Tree. You know, when you don't have decent veins things get kind of starved for essentials. After looking at the scan the lady then starts spouting off about how they can do back adjustments to fix all of my problems because pinched nerves were probably what was causing the Wegener's. All I could think was, did you miss the part where I said it was an autoimmune disorder, you know, kind of like Lupus. You're back adjustment is not going to cure something that has a genetic component. She wanted me to go in to her clinic and get X-rays and all sorts of weird stuff.
I never even saw a sign on her booth advertising her as a chiropractor or anything of the sort. I politely told her that I would have to think about it, even though I have no plans to call her back or answer the phone if she calls me.
Sadly, this is a common occurrence when you have a chronic illness. Everyone seems to think they can "cure" you and they tend to ignore the whole part about it being a CHRONIC illness. I'm not against alternative methods, but if you choose to look into them, you really need to have a critical eye. Be wary of the people that claim to have a cure; more than likely they do not and are just trying to get money from you. They probably don't care that they could potentially be causing you damage or even killing you. If you have a doctor that you trust, which is an absolute must, bring anything you want to try in regards to your health up with them.
Monday, May 21, 2012
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!
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!
Wednesday, May 2, 2012
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."
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.
Thursday, March 15, 2012
Fighting the Good Fight
I've got a LOT to post about.
For starters- to all those people who are against insurance coverage for birth control I say, do you even know all of the many reasons women take it? I've only ever heard a few arguments against it, so please make me aware if I am missing some, that go like this:
Birth control is against my religion, so having insurances cover it violates my religious freedom. This is a lazy argument. It doesn't violate your religious freedom, you aren't being forced to take it! As my friend put it, if we feel that insurances covering birth control is a violation of the freedom of someone to practice their religion then so is selling pork in the stores. That's against the Muslim religion. It's the same principal people!
I don't want to pay for someone else to have sex. This is a failure to understand how insurances work. People are personally paying for insurance; it is taken out of a paycheck, personally purchased, or in the case of Medicare and Medicade it is something that everyone has paid into while they work. The only way you are going to be paying for it is if you buy it. You could argue about the Medicare/Medicaide thing, and insurance premiums but here is a response for that. You already are paying for someone else's sex. Insurance covers Viagra and Cialis and other erectile dysfunction meds whose sole purpose is to enable men to have sex. At least birth control has other, medical, benefits.
Women shouldn't be having sex so much and then they could afford birth control. This one stems from a basic misunderstanding about birth control entirely. Women's birth control is not like an erectile dysfunction medicine. It is not taken every time a woman wants to have sex. It is taken everyday. It doesn't matter if the woman is having sex or not. It functions by changing the hormone balance within the woman's body which takes time to work, thus, the pill is taken everyday.
The other issue with this argument is that it implies that women only need birth control to prevent themselves from having babies. This is not true. Women take birth control for a variety of reasons: To prevent cysts from developing on the ovaries such as in poly cystic ovarian disease, to help prevent certain cancers from growing such as cervical cancer, it also helps women whose periods are so severe that they cannot function. Sorry, cramps are painful and can be debilitating, some women lose too much blood during their period and become anemic, others end up having vomiting and violent mood swings which the birth control helps regulate. Lastly, women take birth control to prevent having babies.
I take it because, with all the other medications I am on, if I were to have a baby right now it would more than likely have some fairly significant disabilities and I tend to have very painful, heavy periods (tmi, I know). So, if you don't want to cover birth control, fine, but don't complain when you have to help support my potential children who are disabled.
(note, I am not trying to be offensive, but it is true. I would love my children no matter what.)
The next thing I wanted to talk about is that I was turned down for my own SSDI. I have appealed. I just thought the reasons that they gave me were hilarious, though. 1. I'm too young to be disabled (apparently, people under the age of 40 are impervious to becoming disabled. That's good to know!) 2. I hadn't been diagnosed for a year (okay, I'll give them this one- I hadn't officially been diagnosed a year at the time I applied, but my first ANCA positive blood test was two years ago when I had the sinus scars.) and 3. I have too much education (I like to think that this is because they feel I will find my own cure. I'm sorry that my attempts to better myself before I knew I had some terrible disease would count against me in the long run. If I'd known then what I know now I maybe wouldn't have bothered racking up $40,000 in student loans!)
Next up- I've received many a letter and phone call from the government peoples of my state about Rare Disease Day. I am persistent when I want to be. These have inspired me to now write a letter to President Obama. Not for anything special, but to let him know that May is Vasculitis Awareness Month and that I plan on holding an ice cream fundraiser. He is invited if he wants to come.
I guess I spoke about the last thing I wanted to talk about when I wrote about my letter, so, for now I guess that's it!
Oh! and here is the VF's new slogan since Susan G. Komen sued the old one away from us.
For starters- to all those people who are against insurance coverage for birth control I say, do you even know all of the many reasons women take it? I've only ever heard a few arguments against it, so please make me aware if I am missing some, that go like this:
Birth control is against my religion, so having insurances cover it violates my religious freedom. This is a lazy argument. It doesn't violate your religious freedom, you aren't being forced to take it! As my friend put it, if we feel that insurances covering birth control is a violation of the freedom of someone to practice their religion then so is selling pork in the stores. That's against the Muslim religion. It's the same principal people!
I don't want to pay for someone else to have sex. This is a failure to understand how insurances work. People are personally paying for insurance; it is taken out of a paycheck, personally purchased, or in the case of Medicare and Medicade it is something that everyone has paid into while they work. The only way you are going to be paying for it is if you buy it. You could argue about the Medicare/Medicaide thing, and insurance premiums but here is a response for that. You already are paying for someone else's sex. Insurance covers Viagra and Cialis and other erectile dysfunction meds whose sole purpose is to enable men to have sex. At least birth control has other, medical, benefits.
Women shouldn't be having sex so much and then they could afford birth control. This one stems from a basic misunderstanding about birth control entirely. Women's birth control is not like an erectile dysfunction medicine. It is not taken every time a woman wants to have sex. It is taken everyday. It doesn't matter if the woman is having sex or not. It functions by changing the hormone balance within the woman's body which takes time to work, thus, the pill is taken everyday.
The other issue with this argument is that it implies that women only need birth control to prevent themselves from having babies. This is not true. Women take birth control for a variety of reasons: To prevent cysts from developing on the ovaries such as in poly cystic ovarian disease, to help prevent certain cancers from growing such as cervical cancer, it also helps women whose periods are so severe that they cannot function. Sorry, cramps are painful and can be debilitating, some women lose too much blood during their period and become anemic, others end up having vomiting and violent mood swings which the birth control helps regulate. Lastly, women take birth control to prevent having babies.
I take it because, with all the other medications I am on, if I were to have a baby right now it would more than likely have some fairly significant disabilities and I tend to have very painful, heavy periods (tmi, I know). So, if you don't want to cover birth control, fine, but don't complain when you have to help support my potential children who are disabled.
(note, I am not trying to be offensive, but it is true. I would love my children no matter what.)
The next thing I wanted to talk about is that I was turned down for my own SSDI. I have appealed. I just thought the reasons that they gave me were hilarious, though. 1. I'm too young to be disabled (apparently, people under the age of 40 are impervious to becoming disabled. That's good to know!) 2. I hadn't been diagnosed for a year (okay, I'll give them this one- I hadn't officially been diagnosed a year at the time I applied, but my first ANCA positive blood test was two years ago when I had the sinus scars.) and 3. I have too much education (I like to think that this is because they feel I will find my own cure. I'm sorry that my attempts to better myself before I knew I had some terrible disease would count against me in the long run. If I'd known then what I know now I maybe wouldn't have bothered racking up $40,000 in student loans!)
Next up- I've received many a letter and phone call from the government peoples of my state about Rare Disease Day. I am persistent when I want to be. These have inspired me to now write a letter to President Obama. Not for anything special, but to let him know that May is Vasculitis Awareness Month and that I plan on holding an ice cream fundraiser. He is invited if he wants to come.
I guess I spoke about the last thing I wanted to talk about when I wrote about my letter, so, for now I guess that's it!
Oh! and here is the VF's new slogan since Susan G. Komen sued the old one away from us.
Saturday, February 25, 2012
Rare Disease Day pt. 2
Alright folks, here's the download.
For Rare Disease Day (save the date, it's the 29th) you may have other things planned, seeing as how it's leap year and all that. I'm not aware of any big howdidos on the leap year, but any excuse to have a party, right?
Anyways. Take some time from your busy Leap Year party schedule to film your story (if you have vasculitis or are a caretaker) that explains how vasculitis has affected your life. The films are due by the 29th and you can see all the rules here.
The theme is "Helping Extraordinary People Live Extraordinary Lives"
Have fun and tell your story!
For Rare Disease Day (save the date, it's the 29th) you may have other things planned, seeing as how it's leap year and all that. I'm not aware of any big howdidos on the leap year, but any excuse to have a party, right?
Anyways. Take some time from your busy Leap Year party schedule to film your story (if you have vasculitis or are a caretaker) that explains how vasculitis has affected your life. The films are due by the 29th and you can see all the rules here.
The theme is "Helping Extraordinary People Live Extraordinary Lives"
Have fun and tell your story!
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