That Moment When....

You are able to return to the GP you were seeing back at the very beginning of your chronic illness journey because your insurance changed.




One of the least annoying things about having to change insurances in order to keep my rheumatologist was being able to return to the GP that I've seen since I was 5. I made an appointment with him so I could reestablish myself as a patient.

It was really good to see him and we talked a bit before he turned to his computer to check my medical records. As he was loading them up he goes, "Let's see what's been going on since you were here last...."

Cue the long list of procedures and tests and hospital visits and an astonished, "Oh" from the doctor.

Then we got to laughing about me having a pill splitter and pill case!

By the way, I've got a new pill case again. My big one wasn't holding up well, sadly. Now I've got one where each day is a separate box that is removable.

It's this one

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.

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.

Things That Really Grind My Gears

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!

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.

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!

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!

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.

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!

Doctors, Specialists, Quacks, ER's and Maybe Even Some New Age Healers!

So, you've just been informed, maybe after countless doctors appointments, maybe after one faithful trip to the ER, that you have this rare disease that can cause life ending damage to your internal organs if you don't keep an eye on it. This is the moment where you decide that maybe that's not a good thing and it's something that you should get on top of as soon as possible. I mean, no one (well, maybe that one person has, cause there always has to be one) has said that end stage organ failure is on the list of things they want to do before they die.

Then, maybe you start thinking, 'Well, I'm not a doctor, how do I know my livers and spleens and kidneys and lungs and harpsichords and whatever else is inside me is being damaged?' Just as a forward note, you won't notice your kidneys going until they have packed their bags and have all but left the building; they don't hurt. You might get a hint if your, pardon, urine is particularly pale or foamy, but that can also be caused by drinking lots of water. Sometimes you'll get visible blood which is a sign that you need to head to the nearest person with needles and a stethoscope, but rest assured, you won't know it's your kidneys doing this to you. It could be a bladder or urinary tract infection. I had one of those recently, in the bladder, lots of blood and more pain than anything I've had with my kidneys (kidneys that the doctor was surprised weren't failing because of how much damage there was).

But, back to the original point. You are not a doctor, so you might need some help in monitoring these things that are inside you and make life so very livable.

Enter the specialists. As a Weggie (I wonder if we should come up with something new to call ourselves, as our disease has had a name change after all) I need help with all the areas that my disease has effected. I've mentioned my ENT before, he only looks at my ears, nose/sinuses and throat. This is what he does. He fixes any scars that come and can give me tips on trying to keep these parts of me healthy.

I also see a pulmonologist. This lovely lady is the one who actually got me into full blown treatment for Wegner's. Really, though, she takes care of my lungs. I get chest x-rays whenever I go in and she is helping me to prune the little tree growing in my airbags. She helps me keep my breathing in check with all her fancy inhalers and oxygen monitors and tips about keeping allergens down and preventing an asthma attack or working through one if I'm stuck without my inhaler. Mostly she just impresses upon me that I need to keep the inhaler on you I swear... 

Of course, I also see a rheumatologist. Now, this one can be a little tricky. You can't just go see any rheumatologist, but you have to see one that specializes in vasculitis. Many of them don't. But you need to have one.You are more likely to find these special breeds of doctors near big medical and research centers such as John Hopkins or the Mayo Clinic. I lucked out, again, in that mine are relatively close to my house, are very knowledgeable and I didn't have to search for them. They are connected to Intermountain Medical, but are not entirely dependent on them so my insurance will cover me going there.

Many other people with Wegner's see a renal specialist so that their kidneys can be monitored. I do not, mostly because my rheumatologist shares his office with a kidney specialist so they can consult right there. Lucky me again, I have one stop shopping in this area.

You'll also probably need a GP. I must stress though that you need a good GP. One that doesn't mind taking a backseat to the specialists. I am currently struggling in this area. My GP that I've had for many, many moons, from back when I was only so high has trouble dealing with my condition. I have gone to him before, experiencing sinus activity (this was post diagnosis which he was aware of) I mentioned that since I started treatment for my Wegner's I have had MRSA before (for those that don't know, MRSA is an anti-biotic resistant staff infection that can turn into flesh eating bacteria if left unchecked) and I thought that this was the same thing. It looked and felt the same and is a known risk for people on immunosuppressant drugs specially those that work in a high risk area (I have mentioned before that I work with pre-kindergarten kids, right?). He didn't even check me for it, just blew off my concerns, gave me an antibiotic that didn't work and when I went in to see the ENT two weeks later was diagnosed with MRSA... again. Currently, I am looking for a new GP, possibly one that is an internist.

Don't be afraid to try out some new agey things either. I have heard some vasculitis patients describe acupuncture as something that helps them a lot. I haven't tried it, yet, you need funds for things like that. Massages can work wonders (also something I can't afford to do), yoga and meditation help a lot as well. Part of vasculitis is triggered by stress, so anything you can do to keep stress free will probably help. Some supplements will be good too, just don't go for things that are supposed to boost your immune system. As my rheumatologist told me, your immune system is the problem, the treatments are supposed to suppress it, what would be the point of doing something to boost it?

Granted, I am no doctor. I am only a patient. A fairly new patient at that. If your doctors have told you something different certainly listen to them over me!