Life, Lemons and the Making of Lemonade

I started back to work yesterday. Excited to be headed to a new school, working with a new teacher, seeing new faces (except that mood swings made me all nostalgic for last year and missing my kids :( ). I figured, I'd had the whole summer off, I was ready and willing to be back at work. Sometimes, though, the mind is willing when the body is not. I got home so exhausted I could barely stand up and was (am) still suffering some ill effects.

I am hoping that this is not a vision of the future to how the rest of the school year is going to be. Granted, I did have to start on a new chemo therapy regimen. I already wasn't tolerating the Imuran really well, but with my recent headaches, my jaw freezing up, ankles/knees/legs/feet swelling up, and a recent onset of eye/ear/and nose issues (possibly relating to the MRSA) it was decided that I should INCREASE my dosage from 150mg per day to 200. This is uncommon, from what I understand 150mg is about as high as they like to go. We discussed other chemo options, I think I will flat out refuse Cellcept if it is offered, but my rheumy did broach the subject of Rituxin which has been shown to work well for ANCA associated vasculitis. It is only available through IV, though, can be expensive and has a side effect (uncommon I have been assured) that does something to the brain.

Now, when I said I haven't been tolerating the Imuran that well I mean that it made me really sick. The methotrexate also made me sick, but I find myself skipping doses of my Imuran just to give my stomach a break. I was then given another pill to help ease my stomach, but I do have to go in for an ultrasound as they are worried that I now might need my gallbladder removed. UGH.

I hate going to the doctor and having them add more pills. I wanted to reduce pills again. I don't even get to reduce my Prednisone, unfortunately AND I had to have a blood pressure medication added in. I am up to 8 pills a day. 8! That's without taking any antibiotics or pain medications. I feel like I should rattle when I walk!

The blood pressure meds are the most upsetting though. I have never had high blood pressure in my life, just the opposite. Once I started showing symptoms of the Wegener's (I spelled it right that time!) my bp has been creeping up. Finally, it got to the point where I had to start taking something for it. This makes me feel like I have failed in some way. That I wasn't able to make enough life style changes to help me keep it in control. I worry that people are going to judge me on it. I have gained weight from my meds, and the Pred itself, also contribute to it. It's frustrating. Life sucks right now.

So I'm trying to take my lemons and make them into lemonade (no fancy alcoholic drinks for me, rats) and do the best I can to fight my disease. It may seem like I'm trying to really plug this thing, but if you are in or know someone who is in the Salt Lake City area please let them know about my fundraiser http://www.facebook.com/event.php?eid=182740895131841 It will run Saturday and Sunday, Sept 17th and 18th (if you don't have a fb, send me a message and I can get you more information). Just having people come helps spread awareness which does wonders to help research into causes and hopefully cures. I don't want to spend the rest of my life rattling like a pill bottle when I walk. Please. Think of how my ninja training has suffered.

Previously On....

A Little Life Comma. There was some question as to whether or not I had another MRSA infection. Well. I do. Again. Now I need to go get a head CT to see if it is in my sinuses (something I should have done last week but didn't. If you've read the blog this long you should know me well enough by now to have expected a similar answer). 

On another note. I am going to be hosting/running a fundraiser for the VF this coming September (on the 17 and 18). All proceeds will be donated to the Vasculitis Foundation and I plan on providing information about the 15 types of Vasculitis to the people who come. I also realized that, since I have a food handlers permit I can make cookies and rice crispy treats for this shindig. I am hoping to get some artists to donate some artworks too.

Having never done anything like this before, I hope everything goes okay!

Vasculitis Awareness Yard Sale Spectacular!!!!!

Cavities

So, I just realized that in all of my posts I had been spelling Wegener's wrong. Out of both words in the disease name, I get the short and easy one wrong. Yup. Also, try typing in Wegener's Granulomatosis into google and search images.

Are you now scarred for life? Scary stuff. And then you see that there is a picture displaying a plate of food about halfway down the page. Wonder what that is doing there. I certainly don't know.

Anywho, I went to the pulmonologist on Friday (it was the Dawn of the Doctor's Appointments as I went to see a new primary physician). Got my usual tests run, chest X-ray and what not. My breathing is good, oxygen levels never dipped below 90. But my X-ray looks like I might have something going on that needs to be kept an eye on.

In my tradition of never doing anything less than 110% I got what is possibly my first ever cavity. Of course, it can't be in my teeth, no, this one looks like it is in my lung. Maybe. The only way we can know for sure is if I get an MRI or a high contrast CT of my lung. This isn't something my Dr wants done right away as it doesn't seem to be bothering or effecting me too much and I need a CT of my sinuses more so than one on my lung.

I have a stuffy nose and with my previous MRSA infections she thought is was a good idea to test me for it again. If it comes back positive, I need to get a CT to see if it is in my sinuses. Having an antibiotic resistant staff infection next to my brain would probably not be the best thing for my health.

We'll see how this episode turns out probably next time on A Little Life Comma (also we'll continue looking at other forms of Vasculitis).

Joy

Get an understanding of what you need to thrive rather than a list of things you have to do.

I got this from the Wegener's group page today and had to share it for a while. 

Sit. Just contemplate the meaning of the words. 

 

 

 

Are you done? Good. I think this is probably a good idea for everyone, not just people who have chronic illnesses.  Living for things that help you thrive alleviates depression which can be a big problem for people suffering from chronic illnesses. Specifically since, at least in the case of Wegener's the disease and its treatments can be debilitating. Most days have some sort of pain in them, and my energy level certainly is not what it used to be. 

This has made me decide that I would really like to conserve my limited resources for things that I love. Teaching, working with children is something that brings me joy. Once public school starts up again I will be doing just that. I love to feel like I have made a difference in the world which is one reason why I think rescuing a puppy has done wonders for me. 

This "little" guy, leaning on my tummy

 Yes, he frustrates me sometimes, but for the most part when I look at him I think that, if we hadn't rescued him when we did he wouldn't be alive right now. No one wanted him, he was skin and bones, he'd been beaten, horribly abused and then dumped out in the wilderness to fend for himself. He needed surgery and medication when we brought him home but now he is flourishing. I am even contemplating bringing him to class one day so the kids can see him. 

Things like this are what makes me thrive. I need to stop thinking about what I "need to do in my life" and what I "should be doing right now" because, frankly, I can't do some of those things right now, they are just out of my reach. So what if I have to take a few months off school until I can start feeling better again, it doesn't mean I won't ever go back. There are reasons why I am not out doing things other people my age are, why I still live with my parents and other social ineptitudes I seem to suffer from. Why I have moon face and would rather not look in a mirror. Focusing on these things makes me feel poorly which will only serve to set me back further. 

No, I shouldn't ignore these things completely, denial won't do me any good either. Having a pity party can be helpful sometimes. Just not all the time. 

So, to move away from the dark I need to look towards what I need in my life to make me happy so that I can thrive. 

Somehow I think that this post doesn't make much sense, but I just wrote the thoughts as they came to me. I've been receiving treatment for 8 months now and am still going through periods of anger and depression brought on by having a chronic illness and aggravated by some of the meds I take. I wonder if they will ever go away?

Creeping Up Behind

to attack you when you least expect it!

Except instead of Khan it says WEGNER'S and I would probably be shaking my fist.

I spend the entire week trying to take things easy so that I can be well rested for a date today, but no. Wegner's doesn't care about all my precautions, it doesn't care that I have plans, it doesn't even particularly care that it is really cramping my style. In fact, doing the opposite of these things is Wegner's goal I have come to believe.

I won't let it win. I am still going to go on my date (it's a get to know you date) even if my leg is all swollen and achy today, even if I feel gut punched, even, YES EVEN!, if I woke up with a nasty bloody nose this morning! Some of you might think it's silly of me, but I have really been looking forward to going out with this guy and I am going to do it.



Whether it kills me or not!

Churgg-Strauss Syndrome (CSS)

Finally I get around to doing something I said I was going to!

On the list of Vasculitis, Churgg-Strauss Syndrome is another type of ANCA associated vasculitis which makes it a closer cousin to Wegner's than, say, TAK (which we will also get to eventually!).

CSS is also systemic (multiple systems) and shares some common symptoms with PAN (polyarteritis nodosa) which is another type of vasculitis. What makes this type different from PAN, though, is the presence of granulomas and eosinophils in the blood (an eosinophil is a type of white blood cell which usually only compromises about 5% or less of a person's total blood count, in a person with CSS they can make up as much as 60% of a person's blood count). Also, the ANCA's.

The "typical patient" (though we all know how this typical patient stuff works. If we went by that I should be a middle aged man of European decent) is a middle aged person, distribution between male and female is roughly equal, with new onset, or newly worsened asthma.

Now, for a long time my Wegner's also presented itself as asthma, but it is one of the defining features of CSS and CSS is the only type of vasculitis where asthma is a defining characteristic. This doesn't mean that everyone who has asthma has CSS, only a very small minority do, but everyone who has CSS has asthma. Other symptoms include nasal polyps and allergic rhinitis. After this it moves on to the presence of eosinophils in the blood. Finally, the disease will move into the vasculitis stage. Much like Wegner's, CSS can go anywhere in the body. Wegner's doesn't often go for the heart, but CSS can and does. The heart and kidney's seem to be CSS's big organs of choice (at least according to Johns Hopkins) with a smaller likelyhood of it causing damage to the lungs. Which seems odd to me considering that ASTHMA is one of its defining features but apparently only 1/3 of CSS patients get lung infiltrates with even less getting bleeding into the lungs and an even smaller amount than that getting lung disease.

Like most other forms of vasculitis, until doctors figured out that "Hey, Prednisone and chemo therapy, when used to together, induces remission!" which means that far fewer patients with vasculitis now die from their disease than before. Previously CSS, like Wegner's, was 100% fatal. It's good to know that we are improving in this area.

That's CSS in a nutshell!