Blood Thinners

Guess who isn't on Warfarin anymore? 

It's me. Not sure who else you would have guessed. Unless you are also not on Warfarin. If so, congratulations!

I'm not completely off blood thinners, since chronic steroid use, autoimmune inflammatory diseases, and the disease I have involving veins anyway means I've got an increased risk for clotting and stuff. But, the one I'm on now, at least, doesn't react with other meds as often and it decreases the risk of bleeding out.

So, hurrah!

I had lots of appointments this past week. ENT says my nose looks bad and it seems to be shifting. Hopefully this doesn't mean my nose is going to sink completely, but if it does there's not a lot I can do about it. He is also concerned about my recent dizzy spells, but he doesn't think it's because of my ears. He mentioned it sounds like MS but we all know that vasculitis can be anywhere and mimics symptoms of other diseases. 

I also saw the hematologist, where, on top of taking me off warfarin, noted that I seem to be developing some jaundice. My bilirubin has been high for almost a year and now the edges of the sclera (white part) on my eyes is turning yellow. 

Guess it's just something to keep my eye on. Pun probably intentional.

I see the eye doctor in a week and eventually I will get in to see the dentist. 

Hope you are all doing well!

Just a Little Reminder

that good things can take a long time to happen.

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!

I Don't Want to be a Mummy

Yes, you read that right.
No, I'm not just saying Mommy with an accent.

Today I had a check up for my sinus surgery so of course that means you get the scope. I don't actually mind the scope all that much, and maybe I'm weird but I like watching the camera move through my sinuses and throat.

Things did not go as planned, though. The sinus that was by far the most damaged is not healing correctly. The skin looks like the skin of my sinus was trying out for the part of Freddy Krueger; all red, inflamed, with sores, and pits and what have you. There was also a scar band started.

That scar band is why I titled this "I Don't Want to be a Mummy" as we saw it on the screen and the doctor suddenly hands me the end of the camera with a "I'm going to need both hands". He then proceeds to pull out of a drawer a giant metal hook with a blunt end.

Immediately, I knew where that hook was supposed to go and I also knew that it wasn't going to be a pleasant experience on my part as thoughts of 6th grade Egypt Studies flashed through my mind.

Anyway, the doctor proceeds to shove the end of the hook in my nose and press it against the little band of scar tissue. And he presses some more. And more. My head was actually being forced backwards as I held the camera in place, but still, that tiny little band must have been made of steel for all the good the hook thingy was doing.

Luckily for me, the doctor decided to stop and we are going to wait and see if A: the scar gets bigger and B: if Freddy Krueger continues to take over the inside of my sinus.

It would be nice if things went smoothly for once, but that's not really to be expected with vasculitis.

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!

He was so cute I had to post two of him!

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!

A Summary of Sorts

If you're reading my blog you're probably aware that what I have is a disease where my immune system has mistaken my blood vessels as foreign invaders in my body. You probably also know that it sucks.

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!

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 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!

Health Fads

I don't know if it's the same where you are living, but in my area there is this big health fad right now that's called "Thrive". It's a supplement system that is along the lines of Herba Life and what not. Most of my friends are doing it right now and are raving about how much it has done for their health and energy and yadda yadda yadda.

This meant that when I went to a friend's house recently for a girl's night I got the whole sales pitch and it was so unexpected that I didn't even get to bring out a Chronic Illness Bingo Card!

By Carolyn Thomas @ HeartSisters

This situation would have been a mark on the "My friend was cured by-" "Have you tried....?" and the "You should try this diet" spaces.

I was told to check out the website and see all the people that have Lupus that are using this and how they are doing so much better now, etc, etc.

Well, that may be, but the problem is that out of the first three ingredients two of them make claims to boost the immune system. Further down there were more immune boosting supplements in the ingredients.

Now, for those that haven't been keeping track: Autoimmune disorder = Immune System Too Over Active So It Tries To Take Out Everything. This is why those of us with autoimmune disorders take immunosuppressants. The goal of treatment is to make the immune system not be some overactive mess and boosting the immune system would work counter to those goals.

My rheumatologist, and other rheumatologists, have all said that unless you have an active infection I and other people like me should not be taking anything that will boost our immune systems. This makes sense to me as a more active immune system increases the likelihood of flaring which is also the same principle behind us flaring when we get sick.

For my friends that are "Thrivinig" more power to you, for those Lupus patients that are "Thriving" I hope you've discussed it with your rheumatologists. For me, I will choose to keep on with what I am doing and not increasing my risk of flaring.

Nose Cameras

The other day I tried to make an appointment with my old ENT, the one that I've been seeing since before vasculitis was even on the radar and I was a more innocent creature, only to be informed that they no longer accept my insurance. I hadn't even gotten a note from them! Because I am a nerdy character in a movie made sometime in the 40's or 50's my response to this was to say "Well that's a fine how do you do!"

Thankfully, I did not say this out loud in the phone and instead asked if their office could recommend someone else to me so that I could be seen.

This led me to a new ENT and my first experience with the nose/throat camera thingy that's old hat to every other person with WG but was a wholly new experience for me.

In keeping with my old timey movie character, my old ENT tended to do things the old fashioned way. Like making me hold a tiny, lit light bulb in my mouth with the lights off. No, it wasn't something weird, it was to see my sinuses!

Anyway, this new ENT was training someone the day that I came in so she sat in while he shoved a little, flexible, and remote controlled camera up my nose.

Let me tell you, I've never had the experience of being embarrassed of what the inside of my body looks like but seeing my nasty looking, crusty inside of my nose on a tv in high definition while other people looked on certainly caused that.

It was a weird feeling, having the camera in my nose pushed back far enough that it had come out the back so we could see the inside of my trachea.

I wasn't nearly as embarrassed by my trachea. It wasn't as gross, just some swelling and irritation.

After the camera experience the doctor said he wanted me to have a CT of my sinuses as I hadn't had one of those in a while. While a CT wasn't in my plans for the day, I went down to the clinic basement and got it done. At least they were showing Pirates of the Caribbean while I was in the waiting room.

The appointment took over two hours and just about the time I was beginning to think that I was going to have to accept the fact that the clinic was my new home I was informed me that I have swelling in my trachea around my vocal chords and a sinus infection and sent home with a prescription. 

Brain Fog

So today brain fog has caused me to head in the wrong direction of my appointments not once, but twice today and it has made me forget the pin code to my debit card. Thank god for debit cards that also act as credit cards or I would have then had to try hoofing it to my appointments where I would have probably walked in the wrong direction out into the desert somewhere never to be heard from again. 

Okay, maybe it wouldn't have been that bad as I was in the middle of a fairly populous city and wasn't too far from my house. But still. Having set out in the wrong direction for my adventures twice already I probably shouldn't take any chances. 

Funny though, because I don't feel particularly brain foggy but I sure am acting like it today!

Appointments

I get that specialists see a lot of patients, but still, 2 and a half to 3 weeks to get in to see someone about breathing issues is a little ridiculous. I am betting that, in the time between now and I actually get in to see the pulmonologist my breathing will have done one of two things. I will get worse to the point where I go in to the ER or I will be better and will go in to see her for nothing.

The life a person with chronic illness is full of stress, just a different kind of stress from what normal people are used to!

Error 404 Vein not Found

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

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

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

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

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

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

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

Happy Anniversary

Somehow, my fourth year anniversary of having been diagnosed has come and gone and I didn't even notice until after the fact. Is that what they mean by "the new normal"?

I'm meant to be getting Rituxan soon. I started it while I was on my blog hiatus so I don't remember if I've mentioned having to go on it before. It works wonders! Really! For a short time I was able to stop taking the evil that is prednisone for a few months until I started having disease activity in my eyes. Since then I've been on a low dose and we're hoping that if I get on a more regular schedule of it I will be able to stay off the prednisone.

If you haven't struggled with that drug before you don't know how much that thought excites me!

Throw Back Thursday?

I know I've been really sporadic with updating this blog as of late and I really would like to start up again.

This is a TBT post, I guess. Back when I first got put on Rituxan in December of 2012 (and subsequently had a pulmonary embolism on Christmas and spent that day, and my last infusion day, in the hospital....) I decided to write a bunch of "Chemo Carols" to occupy the long hours spent in the infusion chair.

It was a long, boring, and more than a little drugged experience. I thought that posting them here on my dusty blog for a TBT would be appropriate since I am getting scheduled for it again after the first of the year.


In the first hour of rituxan my oncology nurse gave to me, a full bag on the IV tree.
In the second hour of rituxan my oncology nurse gave to me, two vitals checks.
In the third hour of rituxan my oncology nurse gave to me, three pillows for my back.
In the fourth hour of rituxan my oncology nurse gave to me, four sterile pads.
In the fifth hour of rituxan my oncology nurse gave to me, five medicines.
In the sixth hour of rituxan my oncology nurse brought to me, six new chemo patients.
In the seventh hour of rituxan my oncology nurse gave to me, seven machines beeping.
In the eighth hour of rituxan my oncology nurse gave to me, eight bruises forming.
In the ninth hour of rituxan my oncology nurse gave to me, nine disinfectant wipes.
In the tenth hour of rituxan my HMO told to me, I’ve got to pay a ten thousand dollar fee.
In the eleventh hour of rituxan the song has gotten long, eleven times I’ve wished that I was home.
In the twelfth hour of rituxan I’m finally going home, for another week I get a reprieve!

Rituxan infusion number 2

More chemo carols brought to you by Rituxan and Benadryl :)
Oh the room is so cold and sterile, but the rituxan in the bag does babble ,
And since the IV’s got hours to go, let it flow, let it flow, let it flow.
I don’t show signs of reacting, my lungs are not hacking,
And since the IV’s got hours to go, let it flow, let it flow, let it flow.
When I finally get to leave, how I’ll skip down the hall to the door,
But the rituxan will help me heal, so my health won’t be so poor.
The IV is slowly stopping, and my vein has started popping,
But as long as we take it slow, the Rituxan flows, the rituxan flows, the rituxan flows.


I posted these on my tumblr account when I first wrote them, so if you've seen them there that's because it was me that did it.

Now you know!

I hope you are all having a pleasant season! I've got some exciting news that's coming after the first of the year so stay tuned!

Medical Science

I'm pretty frustrated with the state of medical science in relation to Vasculitis. There is a girl out there, fighting for her life right now in an ICU because her doctors did not know enough about the protocol for treating Vasculitis that they put her in a coma.

Imuran wasn't working so they switched her to methotrexate which she was only on for 6 weeks before they decided to take her off and give her Mercaptopurine. This form of chemo is not even approved for treatment of Vasculitis, unlike Rituxan which is the most obvious choice and the current go to drug for ANCA assoiciated Vasculitis. 

Now, the big warning on Mercaptopurine is this
 "Mercaptopurine is a potent drug. It should not be used unless a diagnosis of acute lymphatic leukemia has been adequately established and the responsible physician is experienced with the risks of Mercaptopurine and knowledgeable in assessing response to chemotherapy." (http://www.drugs.com/pro/mercaptopurine.html) 

Because they didn't even apparently know about Rituxan I am pretty sure that her doctors were not knowledgeable about any form of chemotherapy. 

This is why education and awareness is so important.

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.

Back from the depths of somewhere

That title up there, I am not considering it a binding contract so if I disappear for a while again I made you no promises so don't even go there.

Can you believe that it's been over two years since I've had a name for the horrible monster lurking in my imaginary health closet for so long? Two years. In those two years I've laughed, I've cried, I've cried, I've sobbed, and I've been angered, but I blame all of that on the prednisone. I can't say that I've gotten used to my new life as a stay at home slouch who has watched most everything Netflix has to offer, but I can at least tolerate it. Hey, someone has to be able to answer all of those pop culture questions on Jeopardy.

All I can say to those people that are new to this journey is that, you have to keep living, and when people try to give you unsolicited health advice take it with a grain of salt, a shot of tequila, and move on with your life. If you're feeling feisty try and explain them a thing but they probably won't listen anyway.  

Anti-Neutrophragalisticexpialadocious

Anti-Neutrophilic Cytoplasmic Antibodies, better known as ANCA's to those of us with diseases that have them. There are three different types of vasculitis that have these special little antibodies present, in most cases the presence of these are used as a diagnostic tool which helped save me from having a lung biopsy. These little buggers are also known as autoantibodies because they differ from regular, helpful antibodies. Bet you can't guess how they differ exactly.

Auto means self. So these autoantibodies do what regular antibodies do but against the self. Yes, if you have Wegner's, MPA (Microscopic Polyangitis) or Churg-Strauss Vasculitis your body has created antibodies just for the purpose of harming your own personal cells.

Of course, you could also have one of these diseases and not have these autoantibodies present. Is anyone else reminded of the Transformers? Autoantibodies, form up! No, wait, don't! I might die!

There are specific types of ANCAS associated with these different vasculitis types. Wegner's is a C-ANCA (80% of patients test positive. I test slightly positive, sometimes, when I'm not testing positive for a different ANCA). Oddly enough, Wegner's shares this ANCA with mad cow disease. At least, that's what I've heard. Wegner's can also test positive for a P-ANCA, the same ANCA associated with Lupus. Does this mean I'm a Lupy Cow instead of a Mad Cow?

Anways, these are the three types of vasculitis that are associated with ANCA so I figure that it would be a good place to start introducing the other 15 forms of vasculitis. Starting with MPA and then probably Churg-Strauss and moving on from there. I feel it is important to try to understand the different forms of vasculitis as a patient with Wegner's because it is A) possible to have more than one type of vasculitis B) having one autoimmune disorder makes you MORE likely to have another and C) while different, each type of vasculitis have their similarities.