Health for Sale

I know it's probably something you've all heard before. That medicine and Healthcare costs are way too extreme (at least here in the US, I can only speak to my experience).

You can't go a day without seeing someone post a fundraiser to help someone with medical costs. Usually it's someone who experienced a sudden illness or trauma, and people seem okay with donating to help. Which is awesome.

But I've seen something a little bit different when it comes to a person with a chronic illness asking for help paying medical bills. You may have seen different, and this is just my observations.

It stands to reason that people with chronic health problems will also chronically have to pay for the treatments of said health problems which means they may ask for money more than a person with the one off health incident. When this happens I've noticed on certain social media platforms that the person with a chronic illness gets met with anger or harassment if they've had to ask for help more than once or twice.

I wonder if it has to do with the general attitudes about chronic illnesses from outsiders being that the I'll person just isn't doing enough to "get better". I've seen comments towards people asking for help paying for a medication be told that they should just work harder, or economize and budget better to outright telling the person to just suck it up and make do without.

It's almost like these people don't realize how a chronic conditions works. I'm pretty lucky, I was approved to be placed on SSI and Medicaid. Unfortunately, not many people with chronic illness are so lucky. They may be unable to work, or can only work minimally, and are expected to be able to afford all the necessities (food, shelter, what have you) and their medications.

Just to give some idea I've got a bill from my latest series of infusions

This is just for a series of 2 infusions that I'm supposed to have every 6 months, this doesn't include the medications I take every day which range in price from about $10 US (managable) to $800 US. Per month. I take 10 different ones that each need to be refilled every month. 

Being chronically ill is expensive. Impossibly so if you are poor or don't have decent insurance. If you don't like seeing chronically ill people post about needing money, we need to work to fix the costs of medicine. It's a shame that people have to choose between debt and needed medications or a roof over their head or food. 

Hmm

My new pill case is larger than my medicine chest.... I may not have thought this through.

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!

Happy Birthday!

Wow, soon I'll have to change the description of myself on this blog from being a blog by a twenty something girl. I'm in my last year of my twenties!

There were many a time where I wasn't sure I was going to make it this far, but for now I'm here and carrying on. I've still got that surprise thing planned. I can't say anything yet because I'll jinx myself, but I thought that maybe if I said on here that I had a plan, even if I didn't put down any details, I would stick to my word.

Viral Awareness

There are so many things going on right now in terms of invisible illness, autoimmune awareness! They are simple things, too. While they might not seem like much to people without an invisible illness but anything we can do to help other people learn about our struggles can do so much.
One of my biggest hopes is for someone to see a post that mentions a rare or invisible disease and for them to look up something about it. I say this a lot, but, the more people know about these diseases the easier it is for people that have them to get treated!

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.

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.

Surgery Over

So I had my sinuses roto rootered yesterday. Hopefully this will lead to better breathing in the future. It was kind of funny because the surgeon was running ahead of schedule, how often does that happen (?), so he was trying to rush the nurses through putting the IV's and stuff in and he finally just got fed up and came to collect me and take me down to surgery himself because he couldn't stand to wait for the orderlies to do it. The whole trip to the surgical suite other nurses would give him a hard time since he used to be an orderly at that hospital before he became a surgeon.

I had some trouble coming out of the anesthesia, my oxygen wouldn't stay up and my blood pressure kept jogging around. But I am well on the way to mending and will hopefully be able to smell and taste things again! At the very least it will be nice to not have a constant sinus infection.

Have fun all you vascies attending the conference in Florida! I hope you all have a wonderful time and learn lots!

Vasculitis Aesthetic

When you don't have to do smokey eye make-up because the dark circles around them have got that covered for you.

Your clothes become less of a fashion statement than a comfort statement.

You try to see if the phlebotomists have tape that at least sort of matches your outfit.

You have perfected the hospital bed selfie.

That lost look you have on your face when you've forgotten what it is that you were doing for the third time in a row.

Tired. Tired can be an aesthetic. You are unintentionally mimicking that super hot, just rolled out of bed and don't care look that's so popular with college students.... or maybe it's just that those college students are just as tired as you are.


Edit:

This was just shared to me and I think everyone with vasculitis should see and read it. What we have is chronic. It will never go away. We have the right to be frustrated, stressed, worried, and to have our voices heard. We may bottle these emotions up, or we may end up taking them out on the nearest available target. But we are only human. I know many of us feel like we are just spinning our wheels when it comes to life after diagnosis, but it's not true. Every step you take when it comes to your disease, every doctor you visit, every specialist you educate paves the way and makes it easier for those who come behind you.

It's a hard, unfair, road to have to take, but you  are taking it and you are doing a good job! So keep going!

Nobody Nose

One week from tomorrow I will be undergoing more sinus surgery. I'm a little disappointed that I have yet to see any super powers develop from the 3 CT scans I had last month.

I was hoping to at least be able to glow in the dark or something. Those comics have really mislead me on where super powers come from....

Anyway, the scans showed what I suspected. My sinuses are way messed up. One of them above my eye is completely full of tissue that they're going to have to go in and scrape out. On the plus side, this will hopefully solve some of the breathing issues I've been having.

I hope it's not a hard surgery, I know that my last one was pretty simple in terms of recovery time. Of course, that was back before I had been diagnosed so we'll see.

This is one that I made for awareness month that I didn't put out.

I'm going to keep on raising awareness in my own way and keep on helping out with my local chapter. When I see the memes I've made shared around it makes me happy! That's just what I wanted them to do; go out and spread so that other vascies can get a laugh and share something that will maybe get others to think about Vasculitis!

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!

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. 

That'll show ya

I think it's funny that at my last rhuemy appointment we were talking about various things and got on the topic of jobs. I said that I don't think it would be a good idea for me to go back to teaching like I had been because of the general germiness of children and my rhuemy said something to the effect of "I don't think you're that fragile".
Well, flash forward to now where I just took a short trip with my parents that involved a 1 hour and 30 minute airplane flight where I came into contact with all of one person that had a cold over the entire trip  and who came home sick? Me. So much for not being that fragile! I didn't even have direct contact with the sick person!

It was an interesting trip, though.

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!

In Sickness and in Health

In Sickness and in Health

The above link goes to an article that talks about how men are more likely to divorce or dump their spouse who gets sick than a woman partner. Really, there's only a six percent difference between men and women who leave their sick spouses so it's not that much of a difference, but it is still enough to make me sad.

I know that not everyone out there has the strength to handle having an ill spouse; hell, not everyone out there has the strength to handle getting sick themselves, but you'd hope that the person you chose to spend your life with would stick with you no matter what.

It's very disheartening to learn things like this even though I don't have a significant other. It kind of reinforces some of the thoughts that I already think to myself when it comes to dating or relationships. I don't want to burden someone with the heavy medical baggage that I carry and it doesn't matter how often I tell myself in my head that the right person won't care, it's still enough to get me to push people away before I get into a position to be hurt.

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.

To Be, or Not to Be

If you've read my blog you know I've had some dark times since being diagnosed. It was hard enough trying to find myself after graduating college but then to get a diagnosis such as the one that I have at nearly the same time throws everything in the air.

Much of my crises had to do with going on disability at the recommendation of my rhuematologist and parents. I still wanted to work, I struggled to come to terms with my diagnosis on top of being told that I needed to stop working for a while, it was a while before I was able to find my stride again and to this day when people ask me about working or disability I find myself growing anxious.

It's not that I don't want to get back to work, I really do, but I also realize that the only reason I do as well as I do is because I am able to rest when I need and the insurance that I have through the state covers the treatments I need to be able to feel better. These thoughts also invariably bring up the thoughts of "Am I sick enough"?

I don't know if other chronically ill people go through these same sorts of thoughts, but I always hear other people's stories and then compare it to my own situation (usually seeing them post about their worst days while I am having a good day) and then think to myself that I should just suck it up because I don't have things as bad as the other person.

It really doesn't help when people tell you that you look good, even when you're feeling terrible. I think that's what's so insidious about chronic illnesses; you learn to put on a front and you learn it so well that people start to assume that you really are better.