Happy Holidays!

Still working on that surprise. I'm not sure when exactly it will be finished but I will let you know!

In other news, I braved a blizzard to make my way up to my rhuematologist's new office for my appointment on Monday. I was just glad my sister was able to drive me and that we took my Subaru!

A bunch of these were on the freeway!

This was a pretty good appointment, my kidneys beans and liver are struggling some, but they could be worse. I'm not gonna complain about that! 

I also now get to break in a new nursing staff since the large hospital my rhuemy now works for does not have vampires experienced in rheumatological diseases. I'm sure they actually do, but the office he was at this day did not. I had to go with regular internist nurses who struggled a bit. It left my hands looking like I've been fist fighting.

Well, that's my quick update. I hope you all have a wonderful holiday season no matter what you celebrate!

Also, I'm typing this from my phone and it won't let me change the paragraph orientation. So sorry about that.

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.

News!

Sorry I haven't posted much lately. I've been working on something that's kind of important to me and if you've been following and enjoy my blog you will be excited about it too! But I'm not going to say anything other than what I've already said here until I get everything all worked out!

I hope you all stick with me and can be patient for a bit!

Have a happy holiday season and take things easy!

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!

Happy Anniversary ADA

I meant to make this post last month, you know, when the American's with Disabilities Act turned 25; but if you've been following me for a while you should know by now that I can be very sporadic when it comes to posting. So, sorry for that!

Anyway, with the ADS being legally old enough to rent a car if need be, many people assume that there isn't work to still be done in relation to rights for people with disabilities. If you assume this, you would be wrong. There are still many issues that need to be resolved; such as how prohibitive the process is for people with disabilities that need assistance is when that person decides to marry, or, if the person was married before they needed assistance they are often forced into divorcing their spouse.

Another huge area that needs improvement is in the treatment of, and social perception of, people with invisible disabilities.

One way this is happening is by a push to start using a more inclusive symbol for disabled parking and bathrooms. These new symbols would show not only a person in a wheelchair, but would also demonstrate other ways in which a person may be disabled.

The hope in doing this is that more people will stop judging those with an invisible illness or disability for exercising their legal right for equal access. This may lessen the stigma many of us face by having invisible disabilities.

It is always frustrating to come back to your car and see that someone had left you a nasty note telling you how you're a bad person who is going. It's even worse to know that there are some people out there that equate someone having an invisible disability to them "really being too use the bathroom."

Yes, I have come across someone saying that online. They actually felt that, because some people have disability tags but they can't tell what's "wrong" with the person, that it means they are free to use the disability spots without a tag if they "really need to go".

This sort of attitude prevents people that actually need to use those spaces from taking advantage of them. I know it does for me. You couldn't tell by looking at me that my lungs, throat, and nose keep me from breathing right. You can't tell from the outside that my energy on a good day is similar to what most people have when they are sick with the flu. You also can't tell the amount of pain I struggle with everyday.

In the same vein, I hear more and more reports of people who need service animals being questioned as to why they need them or they are flat out asked to leave or people will do whatever they can to distract the service animal (petting, offering treats, etc) against the wishes of the person that needs them, even if the animal has its service vest on.

I've often wondered if, because of the steps taken for people to have service animals that can warn for seizures or diabetic sugar spikes or lows, more people have begun to bring their pets into stores. Because a person with a seizure disorder, diabetes, PTSD, or any number of other invisible disabilities don't look "sick" from the outside people are treating this allowance the same as they are treating the disability stalls.

People tend to see disability allowances as some sort of perk or privilege when in reality, these allowances are there so that those of us that qualify can still live normal lives. It wasn't all that long ago when people with disabilities would be locked away or sent away and we've come a long way since that time, we just need to go a little further.

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!

It's the Brain Foggiest

You know it's a high brain fog/ exhausted day when you stand outside your front door for five minutes trying to use the key fob that unlocks your car to unlock your front door. At least I was hitting the unlock button I guess.... Hope this makes you all laugh, cause I am.
#VasculitisAwareness

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!

Vasculitis: The Life, The Legacy, And So Much Netflix Watching I Could Barf

Seriously, I think Patrick is on to something here.....

So, today is day three of Vasculitis Awareness Month and I wanted to maybe let you in on how the typical day for me goes. 

For starters, I wake up. Most people do this activity, so, so far so good! Not much different from a normal person. It always takes me anywhere from a few minutes to a half hour to actually make it to the "getting out of bed" stage of my day. I know a lot of people are this way, but not all, so I'm going to count this as another tick in the "still normal" box.

Now here's where things get a little iffy. Some days I am super stiff so getting dressed poses some issues. I know a lot of people with vasculitis that take these days to stay in their pajamas but not me. Oh no. I'm too stubborn for that; besides, I might need to go outside and nobody wants to see me in my pajamas. Nobody.

Stiff days means that I gravitate towards shoes that I can simply slide on so I don't have to do as much bending. It also means that I tend towards wearing whatever clothes are in easy reach. This has lead to some interesting wardrobe choices on my part.

Before I can face the day, I have some pills to take and inhalers to puff. I try to remember to take a pain pill (even though they don't do much but soften the pain a little bit) because if I don't the constant pain will trundle up higher and higher until I can no longer ignore it.

When I finally struggle out of my bedroom I have to take a rest for a minute so that I can get up and feed my dogs. Fatigue is one of my biggest problems, so sometimes tasks that should be easy can take me forever.

What they don't tell you about fatigue is, it's more than just being physically tired. It also encompasses mental and emotional tiredness as well. Just know that my klutz factor has been ramped up to 800. I'm not joking. In the last two days I've managed to shut my arm in a sliding glass door (the whole thing, not just a little pinch of the skin). If I had been in a horror movie that door would have chopped through my forearm and I would be typing this to you one handed. Then, I smacked the same arm, in about the same part, on the door knob of a restaurant bathroom and now I have a lump.

I trip a lot, and sometimes when I'm having a conversation with someone my mind just stops.The words just run out and I can no longer brain. Much of my communication has devolved into grunts, stutters, and pointing at "the thing". I also heavily rely on whomever it is that I'm talking with to have superior detective skills.

Most of the day this isn't a problem because everyone else in my house works and I'm the only one home. Makes communication easy, but there are other struggles that arise because no one else is around to check out what I'm doing.

Many a soup can has been lost because I read the word Tomato. Double checked and could swear it still said Tomato; but then upon opening the can discovered that it was, in fact, Chicken Noodle. By this time the label has already changed back to say Chicken Noodle because labels are tricksy things and they don't always say what you thought they did. There are also many cases where I put something in the microwave leave the kitchen and then have a freak out because I left a metal fork or something on the plate (thankfully, so far none of these freak outs have been for an actual reason as the fork is smart enough to not be on the plate when I open the door). There was also that time I put my pizza rolls in the microwave for ten minutes because I swear that's what the directions said and ended up with tiny little pizza briquets. It was a sad day indeed.

When the weather's nice enough I like to sit outside with my pups for at least 20 minutes. This only happens if I can find shade to sit in. No shade = no sit. I burn just like my poor dead pizza rolls of not so long ago.

I try to read on the days I'm braining enough to understand what it is telling me on the pages. Sometimes I like to play those new fangled computer games.  My life seems so much better when I can create a family in The Sims and become their sometimes generous sometimes terrible god.

I have also attempted to take up many different types of crafts but the only one that seems to have stuck is making scarves with a loom. Crocheting and I chose to see other people. I also like to talk with other people that have vasculitis online because the internet is amazing and it's always nice to talk to people that get it!

For those days that I just can't make it out of my chair, though, I have Netflix. Or maybe I should say that Netflix has me. I  have seen so many things there, some of them great, some of them good, many of them leave me wanting for those precious moments of my life back.

Lately, I have taken it upon myself to start going for a walk around my block at least once a day. I don't like being stationary and long to be able to go out to work, but for now a short jaunt will have to suffice. Eventually I'm hoping to extend these walks further, but for now it's good.

On the days that I'm feeling particularly brave I will head out to a store to walk around. Unfortunately, I may get followed by loss prevention because I dress like a hobo.

Many of my fellow vascies take naps during the day, but I try not to so I can sleep better at night.

Written out like this it seems like I do hardly anything. I'm sure I've missed a lot. This is a very brief summary. It also doesn't include the days of doctor's and clinic appointments which are an entirely different species of animal.

I also don't think I've done a very good job of showing what the fatigue and brain fog is like, but hopefully you get the idea.

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. 

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.

Sleeping is the Best!

Watching my dogs laze about made me think that it would be nice to live their lives, and then I realized that, my life isn't that much different from theirs at the moment.

I sleep, get people to make me food, and do my best to take care of myself. My sister told me that all I need now is a food bowl with my name on it. Thanks for that.

I've got to make light where I can, personally I think that little anecdote up there is kind of humorous and people that aren't chronically ill are probably thinking that it would be nice to spend their time like I just said I do. But they are only seeing that part.

What I haven't mentioned is that the reason my life seems so relaxing and ideal is because I don't have the energy to do much of anything else. Even things that I really want to do.

This past few days was Fan X, a local Comic Convention here in SLC that takes place in January and I had to miss it. I would have loved to go, I love these conventions, seeing the costumes and interacting with other fans.

There were two reasons I could not go, though. The first being that due to people deciding not to vaccinate their children there has been a measles outbreak in my state. Measles and being on immunosuppressants don't mix. So thanks all you anti vaxers for being unaware of how your choices effect everyone else.

Secondly, even if there hadn't been a measles outbreak I wouldn't have been able to go because I did not have the energy to get out of bed at all this past week. I'm pretty sure that my kidneys are failing again. I have all of the symptoms. I tried to get in contact with my rhuematologist but only managed to get their less than stellar answering service who tells me I have to call back when I tell them I want to leave a message, because taking messages isn't something that answering services are supposed to do or anything.

Hopefully soon I will be able to get my infusions going again so that I can start feeling better. But until then, I will live like my puppies and only worry about sleeping and taking care of myself.

Thanks for reading this ramble.

Flaring and a Book Review!

How does one tell that they are flaring, you may ask?
Well, one of the ways I can tell is the amount of blood that I spit up while I'm brushing my teeth. Another is the amount of pain I usually am in, also, if I sleep for 16 hours a night and then wake up only to fall asleep while I'm sitting up not even four hours after I leave my bed is another good way to determine just how active my disease is being.

Of course there's always the fall back of what sort of stuff is coming out of my nose and lungs and how many sores I have in my mouth and on my skin, but that's only if you want to really get technical.

In other news, I can't have any Rituxan until February because my insurance at first didn't want to cover it, then they said they'd pre-approve it but that it would only be pre-approved for February. At least it's only another couple of weeks. I've never had this issue with state insurance before, only when I was still on my parents insurance did I have to fight to get my medications.



Ah, well. It is what it is. On to the second half of this blog post.

I finished Lock In a few days ago and I loved it! You can really tell that Scalzi did his research when it came to disability. There were a few things that I wonder if he is going to cover if he does any sequels, though.

First, I would have liked to see some people that had Haden's actively wanting to have their Haden's cured. In the disability community chronic illness is a subcommunity that can sometimes feel left out when it comes to the positive messages that circulate within the larger disabled community. Often times people with chronic illness want a cure, they don't view their bodies as being differently abled, but as something that they want corrected. This is an attitude I expected to see within the Haden community as the locked in symptom was due to an illness. I could imagine that many people who got Haden's when they were older would have more of this view as opposed to the younger people who are locked in and have grown up living in the Agora.

I also would have liked to see more interactions between people that were locked in and were using Integrators. That was a situation where it would have been interesting for the author to explore the idea of invisible disability. There was a short bit where this seemed to be brought up, but it wasn't explored with much depth. People with invisible disabilities are often treated poorly because they "don't look disabled" enough so others feel that they don't deserve to use the disabled parking spaces or they are ignored when it comes to discussing things that effect the disabled community.

I really liked how Scalzi brought in the issues in medical funding and what would happen to people if they were suddenly faced with losing their disability status. In my case, I would be dead if I were unable to have state provided insurance to help cover medical costs. Scalzi also brought in the rarity of those suffering from Haden's that were locked in and how much of a glut happened in research into their issues because of the famous people that caught Haden's and became locked in. Having a public face to put on a disease is the easiest way to get funding for a disease; without funding people that end up with rare disease have to struggle and fight to get treatments. 

I really, really enjoyed the novel and I hope that Scalzi writes more in the universe he has created.  He was able to touch on all of these subjects within a story where the main focus was a crime mystery. I wish more authors were able to understand the importance of detail in their world building when it comes to stuff like this.

John Scalzi's Lock In

I read a lot, and by a lot, I really mean a lot. One book that I am very excited to get into is Lock In by John Scalzi.

This is a sci fi book that deals prominently with disability. And probably contains some spoilers even though I am not far into the book yet.

Cover taken from the Amazon page where this book is sold (see link above)

The plot takes place in a world where a flu like epidemic has caused certain people to suffer from locked in syndrome where they are conscious but they are a prisoner in their own bodies. As some of you probably know this is a real thing that has happened to some people, not neccesarrily the flu portion, but the locked in portion.

In this world there are people that caught the illness but instead of being locked in they became able to allow their minds to be shared with the people that are locked in and so offer their services in that way. The main plot deals with a murder that has happened by a person who was allowing themselves to be controlled by a person that is locked in (at least that's what I think anyway).

 I am only 50 pages in and I've already seen some promising things about disability representation. I wonder how much invisible disability will factor in since some of the characters are able to put on a new body and so they would not physically show their disability as opposed to the people that use a robot like structure that makes their locked in status very visible.

There is also an overarching issue where the government feels they are spending too much money on the people that are locked in and the resulting cut in funding would leave countless people that are locked in with no way to support themselves and no hospital care. The reasoning being that, with all the "options" available to these people to interact with the public and hold down jobs that these people shouldn't be classified as disabled anymore so they should not get the support of the government.

I think that this is very poignant in relation to some of the things I've seen happen to disabled people. There are actual people out there that assume having things like handicapped parking, ramps, and special seating on public transit are privileges that are undeserved instead of a way to let people of varying abilities participate. That and the way that people that are on disability benefits are always living in fear of the government coming in to take away what meager living and healthcare they receive.

I've only gleaned this from the first 50 pages so I can't wait to see what they rest of the book holds in store!

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!

A Friend in Need

This is a call out for help for this young man, he is a friend of mine, I met him through the vasculitis support groups on facebook and he has been through a lot.

His name is JJ and he has Granulomatosis with Polyangiitis (Wegener's) like me that has really messed up his lungs. On average, he has one surgery per month just to help him clear out the gunk that accumulates in his lungs so that he can breath. It is impossible for him to keep living this way, but he cannot afford to make the trip to see the expert that he needs to that could really help him. He spent last year's holidays in the hospital and this year he had to spend the holidays sick in bed instead of with his young son and family.

I know that money is tight for many people, but even if you could share the link to his donate page on facebook or wherever it would be wonderful.

https://www.medgift.com/JjJordansSupportPage