Wednesday, April 28, 2010

Vasculitis Awareness Week

As you know, I've been boring the pants off everyone this month writing about Vasculitis and Wegener's in anticipation of Vasculitis Awareness Week, which is this week.  But I'm now half way through the week and I haven't posted at all about it.  Not so on the ball I guess.

Last week I took a bit of a detour from the medical facts and actually wrote from the heart.   It was hard for me to do because I'm used to being all stoic - always telling people "I'm fine" when they ask.  But I wasn't feeling fine at all, physically or emotionally and decided to "own it" as my therapist would say. 

I have to say that I am pleased and humbled by the outpouring of support I got through emails and comments.  Not to mention 10 new followers.  Thank you all.  You really gave me that little boost I sometimes need to keep going.

So now for a reminder.  At the beginning of the month I announced a giveaway to encourage people to share information about Wegener's and Vasculitis with others.  In exchange for doing any of the following, you get a chance to win the Hope Necklace, pictured above.  It is made with copper clay and precious metal clay, which I riveted together.  It's hung on a thin double cord of of sterling beading wire and has a sterling silver clasp.

So here's what you have to do to get an entry:

  • become a follower of my blog,
  • tweet about a blog post,
  • post information on Facebook about one of my blog posts,
  • become a fan of my Willow and Me Facebook page, or
  • mention my giveaway and Vasculitis in your blog. 
Several people have done those things, but I haven't been able to keep track of it all.  I need you to pop me an email to each time you do one of the things on the list so I can be sure your entries are included?  I just need your email so I can notify you if you win, but I will not share it with anyone at all for any reason.

You have the end of the month to make sure I have all your entries.  My plan is to draw for the winner on May first, but that is also my baby's 15th birthday (no so much a baby anymore!) and I don't know how busy I'll be that day.   I will do the drawing by Monday, May 3rd at the very latest.

You also have until the end of the month to have any purchases you make at my Willow and Me Etsy shop go towards my donation of 10 percent of my sales in April to the Vasculitis Foundation.

Thanks again!

Tuesday, April 20, 2010

Wegener's Sucks

I've been feeling sorry for myself a lot lately.  Unfortunately, it happens more than I care to admit.  I've been sick, with a cold that made itself so comfortable in my lungs that even a week's worth of antibiotics couldn't make it go away.  Or else maybe it's my new normal to have my chest hurt when I breathe.  I don't know anymore.

Originally, I was going to write about the treatment I have undergone with Wegener's for this post, but I have decided to share my misery with you instead.  Probably misery is too strong a word, but I sure do feel like crap in more ways than one.  When I started writing about Wegener's this month, I had visions of reaching hundreds of people through the power of the Internet.  I know I don't have very many blog or Facebook followers, but I was counting on the fact that some of my followers would pass on and it would all snowball into one great discovery of a rare disease.  Well, that didn't happen.  As far as I know, I have had seven different people repost, tweet or share on Facebook a total of 13 times.  I didn't ask for money.  I even had a giveway as a prize.  The more someone shared with others the stories on Wegener's, the more chances to win they would have.  Perhaps no one liked my prize.  I thought it was pretty good and it was my first attempt at using both copper and silver clay together.  *sigh*

So then I have asked myself is it because my stories are boring?  I'm sure they are.  I bet reading about Wegener's is not any more fun than having it.  So, wallow with me, will you, a bit as I talk about what it's like to live with Wegener's?  I'll try not to whine too much.

What's it like to have Wegener's?  Well, sometimes it is only a minor inconvenience and other times it really sucks.  At the best of times, I have a runny, stuffy nose.  Whenever I blow my nose, I either blow pink stuff or dried, crusted blood.  I have a hole in my nose and I whistle when I breathe.  Probably no one can hear it but me, but it's annoying, especially when I'm trying to sleep.  I find I breathe through my mouth a lot because I don't always feel like I'm getting enough air and my mouth is always dry as a result.  On good days I have enough energy to get through the day.  I try to exercise because I know that is good for me for many reasons, and I do walk mostly, but when I try to step it up, my hips and knees start to hurt.  My left elbow and my right wrist hurt almost all the time and I get sinus headaches fairly often.  Naprosen is sometimes my best friend.  I take what seems like a bazillion pills a day for all my various ailments.  Once a week I give myself a shot of a toxic medication that slows down my immune system.  I have to be extra careful not to catch anything because whatever I get always goes into my sinuses and lungs.  I'm supposed to do two different inhalers a day but I'm trying to wean myself off those to see how my lungs feel without them.

I'm one of those "high risk" people who had to have the H1N1 and seasonal flu shots.  That's no big deal to me, because I have never really been bothered by needles.  I bruise easily and cuts don't heal as fast as they used to because of the Methotrexate injections.  Thankfully, the folic acid I take helps counteract the nausea I had when I first started the injections.  Just as another annoyance, my hair has changed.  I am thankful I haven't lost it (which my doctor tells me is possible, even on the lower dosage of MTX that Wegener's patients take), but it feels all wispy now, like old lady hair.  I have to have blood and urine tests every two months to make sure my liver and kidneys aren't damaged by the disease or the medications I take to fight the disease.

When it's bad, it's really bad.  Take everything above and add nosebleeds a couple of times a week, difficulty breathing and chest tightness even without exertion.  Aching in my joints, especially my hands, so bad that I can't type or do my work without stopping to rub my hands a lot.  Exhaustion.  And much, much more.  And I'm one of the lucky ones - my Wegener's is considered limited because I have no kidney involvement.  I can't imagine having to undergo dialysis or having my trachea stretched because the Wegener's causes swelling that tightens it up so you can't breathe.

Sometimes worse than the physical problems are the mental ones.  I get frustrated with myself when I don't have the energy to do something.  Each time I have an ache or pain that's new I wonder if the Wegener's is spreading.  As I type, my chest hurts every time I take a breath.  Does that mean the Wegener's is causing more problems with my lungs?  I had a chest x-ray today, so if there is damage, it will hopefully show up.  I read once that Wegener's patients often don't look sick.  So it's hard to reconcile the way I feel when I look just fine on the outside.  And I try not to complain too much so most people don't know that I even have this stupid disease.  Each time I have to get stronger reading glasses, I worry that the Wegener's is affecting my retinas (there are some preliminary studies that link Wegener's to retina damage - and I already have early-onset macular degeneration).  I worry about what will happen if it spreads to my kidneys.  I worry that it's a potentially fatal disease.

I know that I should be thankful that it's not worse.  I can still do most things as long as I take care of myself.  I don't have cancer and I'm not incapacitated.  Most of the time I am thankful, but sometimes it's not easy to be thankful when you don't feel well.

So all in all I would  have to say that Wegener's sucks.  Having it sucks.  Being tired all the time sucks.  Trying to explain to people what it is sometimes sucks.  So please help me spread the word.  Tweet about it, post about it, talk to someone about it.  And let me know that you have so I can know that maybe the word is getting out (email me at  Thanks.

Wednesday, April 14, 2010

Get a Grip, Willow!

I think I have mentioned that in my studio there is a kitty shelf in the window overlooking the new bird (more precisely squirrel) feeder my father-in-law made me.  The sun shines in that window beautifully in the afternoon and sometimes I put my photo box on the shelf when I take pictures of my jewelry, which I did the other day.  Apparently, I had left a rock I sometimes use as a prop on the shelf.

Well, Willow didn't like it very much.  Yesterday, she spent a lot of time sitting on the table just under the shelf staring at the rock.  Then, every so often, she would reach up and touch it with her paw, prodding it to see if it would move, I think.

Eventually, she got brave enough to get up on the shelf and give the rock a good sniff.

Finally, when it became obvious she wouldn't settle down with the rock there, I moved it down onto the table.  So then she had to check it out there.

Then she spent a while sniffing the spot on the shelf where the rock had been.  She never did settle down on the shelf and hasn't since.  God, she's strange sometimes.

Tuesday, April 13, 2010

Sneak Peek of Bead and Baubles Downeast

Beads and Baubles Downeast
2nd Annual Bead and Jewelry Show
Maine Grind Building, Main Street, Ellsworth
Friday, April 16th, 12:00 noon to 6:00 p.m. and Saturday, April 17th, 9:00 a.m. to 4:00 p.m.

I would love to see you there.  Along with my finished jewelry, I will have some handcrafted beads, charms, pendants and clasps, all made by me of PMC (Precious Metal Clay). 

Silver and gold swirls lentil bead and domed charms.

Large leaf pendant made from Copper Clay.

Top:  Two Twig and Leaf toggle clasps.
Bottom:  Leaf hook clasp.

Monday, April 12, 2010

Wegener's: My Journey (Part II) and My Research

I ended my last post having had a lot of problems, searching for a specialist and having done a ton of research. What I found in my research: Wegener’s Granulomatosis (gran-YOU-low-ma-toe-sis) is named for a German pathologist who first described the disease in the 1930’s, but Wegener’s Granulomatosis wasn’t widely used as a name of the disease until 1954. Granulomatosis refers to the granulomas, or collections of immune system cells, that can occur in the body’s attempt to wall off what it perceives to be an infection.

As you will recall, I stated that the prominent sign of Vasculitis is inflammation of the blood vessels. In Wegener’s, the small and medium blood vessels are affected. It is not contagious (although a person might have a secondary infection that is contagious). It is a fairly rare disease. Depending on what you read anywhere between 1 in 20,000 and 3 in 100,000 people are affected. The incidences are rising, but I think that might be due to the fact that more cases are actually recognized as Wegener’s. Anyone at any age can get it, but it’s most common from middle age onward and slightly more prevalent in men than women. There is no indication that it is hereditary, but research is currently being done on that subject.

Wegener’s can manifest in nearly every place in the body, but is most commonly seen in the upper respiratory system (sinuses and nose), lungs, trachea, eyes, ears, skin, joints and kidneys. Up until the 1970’s, Wegener’s was almost always fatal. Now with certain medications, the progression of the disease can be slowed and many times put into remission.

Signs and symptoms of Wegener’s vary widely, as it affects so many areas. Frequent sinus infections, or infections that won’t go away despite several rounds of antibiotics, are one sign. Frequent ear infections are another. Many people get a scratchy, hoarse throat, sometimes due to the extra post-nasal drip, but may also be due to a narrowing of the trachea. Chest pain, tightness and difficulty breathing may be a sign Wegener’s has gone into the lungs. The problem is that all of these are symptoms of other things, which makes it very hard to diagnose Wegener’s.

A less common sign of Wegener’s is a perforated septum, which means a hole has formed in the cartilage that separates the two nostrils. Generally, this would be caused by the death of tissue due to lack of blood flow to the area, because of the inflammation of the blood vessels. The loss of cartilage in that area can cause a saddle nose deformity, which means the nose, from where the bone stops (Feel the bridge of your nose. The bone ends and the cartilage begins about halfway down.) collapses. For some reason, this has scared me more than anything else, perhaps because it’s one of the only visible signs of Wegener’s. Probably it’s a vanity thing, too. The hole in my septum can be fixed (and so can saddle nose deformity) but not until the disease is in remission, otherwise the hole would probably just open up again.

Some people never have sinus problems, but instead the disease attacks their trachea and lungs, or their skin, making red and purple pustules and rashes. I know of two other people in my area (although I haven’t met them) with Wegener’s. One has had the most trouble with her trachea and has had to have it stretched several times. I think they can only stretch a trachea so many times and then I don’t know what they would do. The other person lives near my mother and was recently hospitalized for kidney problems. Her Wegener’s appears to be more advanced than mine.

There are few tests to diagnose Wegener’s and none of them are fool proof. The first test most doctors are likely to perform if they suspect Wegener’s is an ANCA test, because that is less invasive. An ANCA test is a simple blood test which looks for the presence of a certain antibody which is often found in the blood of Wegener’s patients. The problem is that a negative test does not mean that one does not have the disease. There are many patients with Wegener’s and negative ANCA tests. This may be because there are only a few ANCA antibodies and are hard to see or it may be because the lab or technician is not familiar with Wegener’s enough to recognize the antibodies. Unfortunately, many physicians stop at a negative ANCA test and do not pursue any further. A positive ANCA test, on the other hand, almost always indicates some level of Wegener’s. My first ANCA test was negative. (It wasn’t until about six months later that I had a positive ANCA test, after my blood was sent to a lab that was more familiar with the test.) At that point, the ENT suggested a biopsy of the nasal tissue, which usually will show the characteristic granulomas that appear with Wegener’s and differentiate it from other Vasculitis diseases, such as Sarcoidosis. Mine was negative. False negatives in biopsies (especially nasal) are common in Wegener’s.

Other tests include cat scans and MRIs of affected areas, but they are also not fool proof. Spots on the lungs can appear to the pneumonia. Biopsies of affected tissue are often performed, looking for the granulomas that are frequent in Wegener’s. Often diagnosis is made by a physician even after all of the above tests are negative.

That was what finally happened in my case. My primary care physican agreed to set me up with a specialist in Wegener’s. There is a list of them on the Vasculitis Foundation website. There are only a few in the country, all at teaching hospitals, such as Boston University, Johns Hopkins and the Mayo Clinic. My doctor’s office can be slow in scheduling referrals, so I took it upon myself to email the head of the Rheumatology Department at Boston University Medical Center. Much to my surprised, he responded the next day – which was a Sunday. I had described my symptoms and history and had outlined all the tests I had had thus far. He was very nice and said I should call his office the next day to schedule an appointment.

I did and finally saw Dr. Paul Monach, who is an absolutely wonderful doctor. He spent at least an hour with me on my first visit. He had already read my records and told me right up front that I had Wegener’s, no matter what all the tests said. Apparently my case is pretty classic. He was also very encouraging, saying he was confident that we could get the disease under control. He suggested treatment, but also listed to my thoughts and ideas. He answered all of my questions and not once did I ever feel rushed. I now see him every couple of months. The drive to Boston is worth it to see someone who is familiar with Wegener’s. He also is the head of their clinical trials and so is up to date on newer studies and treatments.

My case shows that it is very important to be your own advocate. You know your body better than anyone else. I knew something wasn’t right, and wanted an opinion of someone who was familiar with Vasculitis. I really wasn’t expecting to be diagnosed with Wegener’s. Strange and rare diseases are things you read about or see on the news, not something that happens to you. But I’m thankful for the diagnosis. I don’t mean to say I’m happy to have a rare and sometimes debilitating disease, but I am happy to know what it is so I can meet it head on.

Next time I will discuss my treatment and living with Wegener’s.

An interesting sideline: Dr. Friedrich Wegener, at least at one point in his career, worked for the Nazi regime in Germany and Poland. The conclusion of a very interesting article outlining the research of two doctors at the Mayo Clinic, describes the views of many people regarding Dr. Wegener:

The role of physicians during the Nazi regime has been highlighted previously [20, 21]. The facts we have uncovered do not prove Dr Friedrich Wegener guilty of war crimes. However, the evidence suggests that Dr Wegener was, at least at some point of his career, a follower of the Nazi regime. Dr Wegener’s mentor, Martin Staemmler, was an ardent supporter of the racial hygiene. In addition, our data indicate that Dr Wegener was wanted by Polish authorities and that his files were forwarded to the United Nations War Crimes Commission. Finally, Dr Wegener worked in close proximity to the genocide machinery in Lodz. His interest in air embolism is also troubling. Although we know that Wegener was a popular and skilled teacher and colleague, our data raise serious concerns about Dr Wegener’s professional conduct. We suggest that the eponym be abandoned and propose ‘ANCA-associated granulomatous vasculitis’ as an alternative.
See the full article here:

In the 1980’s, shortly before he died, Wegener was awarded a “master clinician” prize by the The American College of Chest Physicians, but this was rescinded once his association with the Nazi regime was discovered.

Lastly, a reminder:  Please help me spread the word about Wegener's and Vasculitis.  If you do, you will be entered into a drawing to win a Hope Necklace.  See the details of the drawing here.

Wednesday, April 7, 2010

Wegener's: My Journey (Part I)

Before you start reading this blog article, I want to remind you that part of my aim in writing this series is to raise awareness about Vasculitis and Wegener's Granulomatosis.  Please help to spread the word and you can be entered into a drawing to receive a Hope necklace I have made.  Please click here for more details.  Thanks!

I research everything and I worry about everything, too, which isn’t always a good combination.  So whenever I find something that doesn’t seem right, I worry about it and I research it.  That’s what led me to do some pretty strange searches one day.  I started out with “hole in nose” on Web MD.  And that led me to this happy paragraph:

The nasal septum is the structure between the nostrils that separates the nasal passages. The septum, composed of cartilage and thin bone, can develop a hole (perforation) in the cartilage as a complication of previous nasal surgery, from cocaine use, excessive nose picking, trauma, cancer, or diseases such as tuberculosis, sarcoidosis, or syphilis. As damage reduces blood supply in the septum, the cartilage begins to die, and a hole develops.

Nice.  Very encouraging.   

I suppose I should back up a bit and explain just why I was doing such a search in the first place.  Last winter I had a spate of colds that turned into sinus infections and bronchitis.  I had also had had bloody noses for several years.  Due, I thought, to all the blowing and wiping as well as dryness, not only the outsides but also the insides of my nostrils were sore.  I had decided to try some saline gel I found that was supposed to be for just such a thing.  I’d been using it for a while and it really did help.  One day when applying it, though, something didn’t feel right.  It felt like a hole, which I thought was strange.  I had never noticed one before.  But I don’t make a habit of sticking my finger up my nose so I wasn’t sure.  Using my lighted makeup mirror and a bit of contortion, I confirmed that was exactly what it was.  A hole in my septum – going right through.  Ewww.

So that’s what led me to read the encouraging paragraph above.  Okay, so now I knew there was such a thing and it had a name:  perforated septum.  Gotcha.   A few more searches yielded similar results.  Perforated septums are not terribly common and there are only a few things that can cause them.  Great, I thought.  Which one of these things caused mine?  Let’s see:  Nasal surgery?  Nope.  Cocaine use?  Yeah, all the time (I know you can’t hear the sarcasm, but it’s there).  Nose picking?  Nope.  Trauma?  What kind of trauma?  No one has recently punched me in the nose.  I had read in another place that nose piercings can cause a perforated septum (Duh!  Isn’t the whole point of piercing your nose putting a hole in your septum?  Well, I suppose if you want a nose ring like an ox.)  Nope, no piercings.

So that left me with four other very cheery words:  cancer, tuberculosis, sarcoidosis or syphilis.  I hadn’t heard of sarcoidosis, but it didn’t sound very good, especially being linked with the other three.  Since I didn’t know what it was, that seemed a good place to start, especially since the odds of me having the others were pretty slim (I hoped) – and in the case of syphilis, zilch.  I  clicked on the sarcoidosis link on Web MD.  More encouragement there.  It was described as a rare disease that caused tissue damage, and sometimes heart and lung failure.  But not everything fit.  I didn’t have a rash on my face as was described.

Over a week or so I worried and brooded and researched some more.  At some point, after searching many different combinations of words and symptoms, I finally found a small blurb about Wegener’s Granulomatosis.  Of course I had never heard of it, but at least I had or had had in the past more of the symptoms than those that were listed for Sarcoidosis. 

I decided I had better make an appointment with my doctor.  I think the receptionist thought I was nuts when I told her why I wanted to be seen.  That was only the first of many people to say, “You have a what in your nose?”  Or misunderstand and think I said deviated septum.

I really like the physician’s assistant I see at my doctor’s office.  She listens.  She doesn’t act like I’m nuts or making things up.  And she did listen.  Then she looked in my nose with the thingy they used to look in your ears and stuff and confirmed I had a hole in my septum.  She couldn’t remember having seen it before and went through my records.  She wanted to know if anyone had ever mentioned it before during examinations.  No, I think I would have remembered something like that.  I had seen her a lot over that winter and the winter prior with several prolonged sinus infections and bronchitis that refused to go away.  I'm sure she had looked in my nose and she would have reported something like that. 

She asked me the standard questions:  Had I ever snorted cocaine?  Had I had any recent trauma?  Nose piercings?  Nope.  Nope.  Nope.  We talked about my history of bloody noses over the last several years and she told me there were a couple of things that could cause a perforated septum (about which I had already read), but they were very rare and she doubted they could have caused it.  It was time to see an ear, nose and throat specialist to see what he made of it.  

The ENT didn’t think it was Wegener’s either, but one good thing was that I had also seen him for sinus infections the prior winter.  He had done CT scans of my sinuses then and he looked back to confirm that in those there was no perforated septum.  So it had happened over the last year.  He went up in my nose with a scope and looked all around.   He ordered some blood tests and said that depending on what the blood tests said I might have to have a biopsy of the area to get a diagnosis.  He checked my throat at the same time because Wegener’s can also cause narrowing of the trachea, but he didn’t see any narrowing with his scope.  So I did my blood tests and went on my way.  He did give directions for saline rinses once or twice a day.

In the meantime, I was still sick with bronchitis that wouldn’t go away.  Or something in my chest anyway.  I was told I had asthma or allergies.  The conjunctivitis I was getting must also be allergies.  It was almost springtime – that must be it.  I was given inhalers, which helped a little.  I was on so many antibiotics over those two years that I couldn’t keep track.   The previous year I had a long bout of bronchitis and I had just gotten off antibiotics for a sinus infection that literally lasted over three months.  I had no energy and I slept as much as I could, but I was coughing so much that wasn’t easy either.

While I waited for the results of the blood tests, I kept researching, but now I focused almost completely on Wegener’s Granulomatosis, because the ENT had confirmed that it was probably the most likely cause, even if he didn’t think it was plausible to have caused it.  I found the Vasculitis Foundation, which I have said before has a wealth of information, and several patient-written Wegener’s guides and a patient online discussion group. 

It was starting to make sense to me.  Nearly every symptom that was listed and the progression of the disease seemed to fit.  Bloody noses?  Check.  Nasal crusting?  Check.  Chronic sinus infections?  Check.  Of course the perforated septum.  Chest and breathing problems.    The more I read, the more things made sense to me and the more scared I got.  All the blood tests were negative for an antibody that is often found in the blood of Wegener’s patients.  The next step was a biopsy of the affected nasal tissue.  Not a pleasant procedure by any means, but I have been through much worse.  I went back in a week and the doctor told me that the biopsy was negative.  I had already read that it’s not unusual for false negatives in Wegener’s biopsies because many labs are not familiar with the test and what they are supposed to be looking for.  

Things just kept getting worse.  I was sick all the time.  I had chest pain and tightness and couldn’t breathe, which landed me in the hospital emergency room.  I began having conjunctivitis like symptoms and ear infections.  I started keeping notes, especially because the ENT didn’t seem like he really believed me.  Once we got the negative biopsy, he was ready to say he didn’t know what caused it but wanted to go ahead and fix it.  Reconstructive surgery on my nose.  I wasn’t sure I wanted to do that without somehow talking to a specialist.  Someone who really knew Wegener’s. 

Looking back on my notes now kind of scares me.  I’ve forgotten in the last year all the things that bothered me.  I began having pretty severe pain in my hip but also what my Rhematologist later called “roving arthritis” which would move from day to day.  One day I would wake up and my knee would hurt really bad.  Then my elbow the next.  My wrist and hand the next.  It got so that my hands and wrists hurt all the time.  It was hard to work on my jewelry or even type.  I thought he would think I was crazy, but it’s apparently a classic Wegener’s sign.

I talked to my PA again.  She had also done some research and we both really thought it would be a good idea to get an appointment with a specialist before I went ahead with surgery on my nose.   And so the search began for a specialist…

Next time:   the results of my research.

Note:  I wanted to put a graphic in here that related to Wegener's, but they were all either copyright protected or not very pleasant to look at.

Tuesday, April 6, 2010

May Flowers (in April)

I love using leaves and flowers in my jewelry.  Unfortunately, there aren't a lot of choices this time of year in my neck of the woods.  I have found a solution:  Pressed Flowers!  I found some by PetalAnnie on Etsy.  I bought three different sets, all very nicely packaged to prevent bending.  I was itching to try them out and I didn't wait.  I tried pressing the flowers into the clay.  The impressions are not always as deep as I like but the patinas came out really nice.  These were all done with just liver of sulphur.  I think they almost look like paint.

This necklace is a bit more purply than the photo shows.  I made the chain on that necklace by knitting sterling silver wire on a spool.

The cord on this necklace is actually a medium brown and matches the flower patina quite well.


While I was working with the flowers, I thought it would be nice to also have some of the actual flowers on a piece and I decided on the Secret Garden Necklace, which has a 22 karat gold accented design on one side and a little garden of flowers and leaves set in layers of resin on the other.  I had already tried a test to see how the flowers would hold up in the resin, but I still wasn't sure whether these particular ones would.  The lighter flowers and leaves almost look translucent.

I still have quite a few flowers left, so look for lots more!

Friday, April 2, 2010

Vasculitis - General Information

First, I want to begin by saying I am not an expert in Vasculitis or any of the other topics I will discuss over the next month. I am a Wegener’s Granulomatosis patient. Much of the information I will be providing I have obtained with extensive research for my own benefit, as well as information I have received from my doctors. The Vasculitis Foundation was and still is a main source for much of my research. I strongly suggest visiting that site for much more in depth information that is presented in an clear and understandable manner.

I cannot, therefore, give advice, except to say that I strongly urge you to seek medical care as soon as possible if you or someone you care about has symptoms which might indicate any of the Vasculitis diseases. Believe me, waiting or pretending it’s not there won’t make it go away and could make it much worse.

Vasculitis is a family of 15 auto-immune diseases, whose main characteristic is inflammation of blood vessels.

What is an auto-immune disease? It’s a disease in which the immune system mistakes the body’s own cells for a foreign body or invader and attacks those cells. Most people have heard of Lupus and/or Rheumatoid Arthritis, which are both autoimmune diseases, but few people (that I have spoken with) have heard of Vasculitis.

I was going to list each Vasculitis disease along with its identifying symptoms, but I assume you want to finish this sometime today. The names of the diseases are: Behcet’s disease, Buerger’s Disease, Central Nervous System Vasculitis, Churg-Strauss Syndrome, Cryoglobulinemia, Giant Cell Arteritis, Henoch-Schönlein purpura, Hypersensitivity vasculitis, Kawasaki disease, Microscopic Polyangiitis, Polyarteritis nodosa, Polymyalgia rhematica, Rheumatoid vasculitis, Takayasu’s arteritis and Wegener’s Granulomatosis.

Vasculitis specifically attacks the blood vessels, which causes inflammation. Inflammation of blood vessels causes a weakening and narrowing of the blood vessels. This deprives affected tissues and organs of blood supply, resulting in tissue damage. Different forms of Vasculitis can affect different blood vessels (Wegener’s, for instance, affects the small and medium vessels). Some varieties are relatively specific to certain organs or systems, but all can affect most any area of the body.

The symptoms of Vasculitis vary widely, depending on the form, but all usually include general aches and pains and fatigue. There will undoubtedly be symptoms related to the specific organs or systems involved as well (in the case of Wegener’s, chronic sinus issues are often seen).

Vasculitis diseases are quite rare and often difficult to diagnose because many of the symptoms mimic other, more common, diseases. Blood and urine tests and x-rays, CAT-scans and MRIs may help with diagnosis. Many times a tissue biopsy of the affected area is necessary. Because Vasculitis can be mistaken for other diseases, it is important to continue to seek medical attention, especially if current treatment is not helping.

Vasculitis diseases reach over all ages, genders and races. They can cause permanent organ and tissue damage if not treated early. There is no cure for Vasculitis but it can be treated with immuno-suppressant and steroidal medications. With treatment, Vasculitis can go into remission. Without treatment, it can lead to severe disability or death.

On that cheery note, I would add here that most people I have spoken with or read about are able to cope with Vasculitis with medications and lead a relatively normal life. Some people are able to get off medication completely and go years between flares. Others are on medication for the rest of their lives.

Research is ongoing in all areas of Vasculitis and what is useful in one type can sometimes be useful in others as well.

For more information on Vasculitis in general and the various diseases in the Vasculitis family, you can visit the Vasculitis Foundation website, which has a wealth of information. I cannot recommend it enough. It has been a huge help to me. It also has a list of physicians who specialize in the different Vasculitis diseases, as it is not always easy to find them.

Look for more specifics on Wegener's Granulomatosis next week.

(Please spread the word by about Vasculitis and let me know what you have done by emailing me at Thanks!)

Thursday, April 1, 2010

Giveaway and Vasculitis Awareness

April 25 through May 1 is Vasculitis Awareness Week. I will be spending the month of April doing various things to bring more attention to this family of diseases. Why? Because I live with Wegener's Granulomatosis, one of the many forms of Vasculitis, every day. Throughout the month, I will be writing blog posts about my experiences with Vasculitis and Wegener’s. I will need your help to spread the word and so I am having a giveaway – an incentive for you all to help me - on May 1st. I will be giving away a necklace made especially for the giveaway. You can see it here.

You can have a chance to win this necklace by doing any (or all) of the following:
  • become a follower of my blog,
  • tweet about a blog post,
  • post information on Facebook about one of my blog posts
  • become a fan of my Willow and Me Facebook page, or
  • mention my giveaway and Vasculitis in your blog.
Doing any of those things will give you one entry into the giveaway. You just need to let me know what you have done by emailing me at Each time I make a new blog post, you will have another chance to spread the word (and be entered again), but you must email me each time you do so I can keep track. Please include a link to, or copy of, whatever you have done. At the end of the month, I will tally all of the entries and, via a random process, will choose a winner. If you are already a follower of my blog or a fan of my Facebook page, you have automatic entries for those. Just pop me an email to let me know you want to be entered.
In addition to raising awareness for Vasculitis, I think it’s important to raise funds for Vasculitis research. So, for the month of April, ten percent of all the sales through my Etsy shop will go to the Vasculitis Foundation. Each purchaser will also receive a copper Hope charm as a thank you gift. For April, I will suspend all other donations I would normally give so more money can go to this cause (usually, I donate $10.00 to an animal-related charity if someone purchases one of my Willow Necklaces).

For the month ahead, look first for some general information on Vasculitis and then more specific information on Wegener’s Granulomatosis. After that, I will talk about my journey to diagnosis and living with Wegener’s. I will focus on Wegener’s, because that is what I live with every day.

For more information on Vasculitis in general and its various forms, visit the Vasculitis Foundation. A wonderful place to read stories and get information from other sufferers of Wegener’s Granulomatosis, is a Facebook page dedicated for Wegener’s patients and those close to them.

Thank you for all your help in spreading the word about these diseases! If you have questions along the way, feel free to post them in the comments and I will try my best to answer them.