What a Way to Spend a Weekend

I learned something this weekend. Cat bites are no good.

For the first time in my entire life, all of those years owning cats, I got bitten by one and it resulted in not one, not two, but three ER trips and a hospital stay.

My hand where the bite is is not happy at all because of the meds I take for Vasculitis my hand immediately developed cellulitis. It's not a good situation. 0 out of 10, I don't recommend being bit by anything.

In other news, I've got my SSI review this month too which makes me nervous.

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!

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.

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

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!

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.

Yoga vs Me

Oh man, I made the mistake of going to a yoga class with my mother last night. Cue me sleeping in to 1:00pm today and waking up so stiff and painful that I can hardly move. Arthritis and yoga do not mix. I snap, crackled, and popped through as many of the poses as I could but downward dog is just not my friend. Not to mention lung and connective tissue problems makes it really hard to breath during said stretches. Let's not even start on attempting to balance.
It was an experience for sure.

Next time, I will bring a chair so that I can modify the poses to be easier for me to handle.
If you would like to try it, here is a link to a lady who specializes in yoga for arthritis and she has instructional videos on youtube!
https://www.youtube.com/user/KimMcNeilYoga



PS sorry for the sporadic updates.

Back from the depths of somewhere

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

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

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

Letting Go

I know it's been a while since I last posted. Just know that for that time I didn't need to write down my thoughts. I just didn't have much to say. Health wise, the last year has been up and down but I've made it through to sit before you today and type some thoughts down for you to read.

This past almost year has led me to a conclusion. I really want to let go of the person I used to be because all that is doing is causing me grief emotionally and physically. I need to realize that I can't be the things I used to be and my life needs to change if I am ever going to get to a stable place.

But that stubborn girl just keeps clinging to me, haunting me like a ghost that needs to be laid to rest. Laying her to rest is just what I plan to do. I want to make a poppet of the girl I used to be and put her to rest; this way, the new me can rise from the ashes and reach her full potential. I know that I will still have some vestiges from my past self, because my new self will have been born from her, but maybe, just maybe, it will help me let go.

A Letter

Dear Mitt Romney,

In your quest to obtain the presidential election bid this year you have said some things that have made people feel you are out of touch with the everyday struggles of all but a small number of upper class citizens. I have largely agreed with these criticisms, but it wasn't until I thought about one specific thing you said that I really stood up and took offense.

You said something to the effect of 'if you need money you should go ask your parents for help'

Now, I'm sure you can spin this however you want, and that you intended it to mean money to help start a business, but when I applied the basic principle of asking my parents for money for help to my own situation I realized you have pretty much told me that my life is not valuable enough for my government to help keep me from dying.

You see, while I was busy working to pay my way though college, or at least to pay for what wasn't covered by a near full ride scholarship and student loans, working away to better myself and open avenues for a good future where I could be a success I was dying. I don't mean in the spiritual. starving my soul kind of dying because I was working towards a goal where I would be helping others for a living and that's where I feel success lies. No, I was fighting a war against myself, my own immune system was and still is waging an attack on every blood vessel in my body, from the large arteries to the small capillaries.

This is something you should be able to sympathize with as I understand your wife also suffers from an autoimmune disorder.

Completely unaware of what was going on inside me, I graduated college and began work teaching under privileged kids at a Title I public school.

Within a few months of working I was near dead.

I had attributed my symptoms first, to being at college, and environment where many people are not able to go to the doctors and germs are spread readily. Then I convinced myself that I was sick because I was teaching young children. By December my lungs were hemorrhaging, I could hardly walk, and the only reason my kidneys were not considered to be in failure was because the waste being dumped into my system had not yet appeared in my blood work, which came as a shock to my doctors.

This is how, at the age of 24, I was diagnosed with the rare disease Granulomatosis with Polyangiits formerly know as Wegener's Granulomatosis. A relative of Lupus, MS, asthma, Chrones Disease, and a mirade of other autoimmune disorders.

I managed to finish out the school year taking highly toxic medications everyday, but was, regrettably, not healthy enough to return after summer break. I was lucky in that I had been living with my parents while I saved money to find my own place and they continued to allow me to live under their roof while I spent all of my savings on monthly doctors visits, prescriptions, ER visits, and surgeries.

This was all while I was still on my parents' insurance.

Here is where I get to my reasoning that you have told me I should resign myself to die.

I will run out of insurance in the next few months. I was very lucky that President Obama's health care reform at least was able to let me stay insured until I was 26 years old. You know, the health care reform that was based on the model you created for Massachusetts; the one that would have given me a low cost government insurance option that I could afford had you not helped to block it?

At 26, in November, actually, the same month I will not be voting for you, I will become uninsured on top of being unemployed. I have tried Social Security but, funny thing, they say I am too young and too highly educated to be disabled so I have to wait another 12-16 months so that I may plead my case in front of a judge.

Until then, I get to figure out how to come up with $11,000 a year to pay for my life. This figure is only an estimate and does not include any surgeries, ER visits, antibiotics, hospital stays, x-rays, scans, and labwork that often tag every year for someone who is immunocompromised, is taking highly toxic medications daily, and has a mirade of other complications stemming from such.

My parents are currently helping me, they cannot afford to help me cover this sum, either. Unless you are willing to chip in and help Mr. Romney by coming up with better programs or become willing to put your money where your mouth is, I am stuck between a rock and a wall of knives. Left untreated, my disease has a life expectancy of five months or less once symptoms start showing. In this case, death is a painful process of going through multiple organ failures at the same time.

This is a reality that many, many citizens of the United States are facing right now.

Your thoughtless words lead me to believe that you are not just ignorant of the struggles faced by most Americans, you are dangerously out of touch. I need a leader who realizes very few people have the luxury of turning to a vast family fortune when money is needed. I need a leader who knows that, for most of us, one paycheck is standing between having a home and being put out on the street. One missed paycheck is all it would take to destroy a family and send people to their graves.

You are not that leader.

My life is not a privilege, it is a right and who are you to determine my worthiness based upon my family fortunes?

Vasculitis Awareness Month!

It's that month of the year again! Vasculitis Awareness Month, or May as normal people call it.

Look guys, I'm internet famous for vasculitis. Not exactly what I was planning on, but hey. Someone even asked me if they could put my video in a documentary about vasculitis. I said sure even though I think I look and sound like a complete goob in it.

Sorry if I didn't look like what you thought I did. When I made this video I didn't have plans on it being posted anywhere, but since the VF put it on youtube I figured, "What the hey- People are gonna see it now."

More About Social Security

I'm not exactly sure if I should be posting about this, but I think it might help some people out there.

There are things that social security doesn't seem to understand about vasculitis. They don't seem to get that symptoms can flair up at any time, they don't seem to understand that vasculitis (this is all types included) have a mortality rate of up to 98% within two years, and they don't seem to understand that stress and illness increase the risk of symptoms reoccurring.

When a person is attempting to apply for social security in the US they have to list every medication that they take for their condition and why they take it. A while back my rheumatologist and I decided that, in order to deal with the mood changes and depression I had been having in reaction to my situation and the medications I am currently on, I would begin taking some anti-depressants.

This meant that when I applied for SS I had to put down that I am taking this new medication and that I am taking it for depression. I began taking this medication just before I got my first denial so I just added it to the list when I appealed.

It took them a couple of months to decide that if I was on an antidepressant why wasn't I seeing a psychologist for my depression? I must go see one. They paid for the appointment, and the psychologist explained to me that he was just going to do an interview and write a report for SS. What he says doesn't determine my approval or not, but that it helps SS weigh my options.

By this time, the medication was working, I already knew why I was depressed in the first place, and I was on my way to turning things around. I explained all this to the psychologist and we went on with the interview. I was a little concerned because I had lately been having some memory lapses that were bothering me, but the psychologist assured me that this was normal. Well, it's not normal for me. Something that he wouldn't know because he doesn't really know me.

This was my biggest problem with the interview. Sorry, but I don't think that a psychologist really has the ability to accurately determine the mental state of a person with just one interview. Maybe he thinks memory lapses in a 25 year old is normal, but it is not normal for me. I've never been the type to walk into a room and have no idea why, I've never had problems before with remembering words, or what I was talking about. Sometimes I've even forgotten who I was talking to while I was talking to a person. This isn't normal for me.

If SS is really concerned about deciding if a person does need a certain medication maybe they should try to get more than one appointment. My rheumatologist has seen me every month for over a year. She knows me. She knows what I want to do with my life, she knows how very not forthcoming I usually am about my problems, she has seen me in various moods. Bottom line, I trust her judgement on my mental state more so than a psychologist who only did a 15 minute interview.

Maybe it would be better for SS to do more than just take medical records. Maybe they should ask for statements from the physicians that work with the patient so that they can actually see why the decision to try for SS was made. They need to get a more complete image of the person.

Specifically when it comes to people with a disease such as vaculitis where symptoms come and go, medical professionals have no idea how to diagnose or treat, and there are no specialists that really deal with vasculitis. Many times patients with vasculitis are seen as malingering because they will put down on paper how they are feeling, but their bloodwork does not match up with what was said or when a face to face interview is done they don't seem "that sick".

I think what I'm really trying to get at in this post is that, we need to change the way that medicine and government treats patients with hard to diagnose diseases. The diseases that are considered "mysterious".

In my case I do not want to spend my life on SS, I have the drive to get back into work and goals that I want to achieve. Unfortunately, right now my doctors and I have decided that it is not the best idea for me to be back in the work force right now. Until I do go back, I do need some way to support myself. Medical bills have burned through the savings I made while I was working and at the end of the year I will be uninsured. With one visit to my rheumatologist costing me over $350 not including any tests they do I am not going to be able to afford any further health care.

Celebrations, Little Birdies and a Football!

For my first post of the new year I've got excellent news! News that I meant to post a while back and just kept forgetting. I will blame my forgetfulness on the prednisone, because it is my go to scape goat for everything.

For starters the tweeting thing, yup, we totally won! The Vasculitis Foundation will be featured on Broadcause during the week of February 13th through the 19th! The link is to our page on Braodcause where you can find information and donate and what have you. I want to thank everyone that voted/tweeted (specifically all those people I cajoled, bribed, blackmailed, and threatened into it. Not really, I don't do those things.) In other twitter news, my twitter has not become an awareness platform, but a random soundbite platform for my random typings.

The other great news is that, for the first time in over a year, my bloodwork came back all in normal ranges! They are going to let me drop my prednisone to 5 mg a day if I am feeling okay in a few weeks! I am circling ever so closer to a period of quiet or remission or whatever terminology you wish to use. They don't know what I'm doing right, but they want me to stay my course. Which probably means I still can't go back to work for a while yet.

During my next visit in February they are going to decide if I need to continue coming back every month or if we can move out my appointments to longer increments!

I am also aware that some people might not like the Denver Broncos, or Tim Tebow. I don't really follow football so I couldn't tell you anything about the guy. I only bring him up because, as part of the Make a Wish Foundation he spent some time before one of his games with a young 16 year old girl who suffers from Wegener's like I do. She has been diagnosed for several years and has undergone over 70 surgeries. She has had one lung removed and exhibits the "saddle nose" deformity common in the disease. She is still a beautiful girl, though, and no matter how much she has gone through the pictures of her with her family as she is meeting Tim Tebow show a girl full of life and ready to face the challenges she has been given. I can only hope that I can face my future with as much grace as she appears to. 

The press tracking Tebow as he is a star have shed some light on Wegener's and the problems that patients can face.

Hurk Hurk

Bet you can't tell what this post is going to be about! Warning, this one might get a bit nasty.

Back in October it was decided that maybe part of, or most of, my dry heaving/gagging/nausea/sometimes vomiting was due to a gall stone instead of my chemo. A single thing, about an inch to an inch and a half wide wedged in the neck of my gall bladder, the removal of which cost me an overnight stay in the hospital watching bad TV and having my attempts at sleep forever frustrated by a very determined candy striper that wouldn't leave the lights alone in my room.

For a time this seemed to help the sometimes vomiting portion of my problem. Things were looking great!

Then, as November began its too quick turn into December things began to go terribly wrong. My equation went from dry heaving/gagging/nausea/sometimes vomiting to VOMITING EVERYDAY with a side of dry heaving/gagging/sometimes nausea.

I find myself retching into the toilet every time I eat. Hard enough that my ribs pop, my neck cracks and I swear one time my shoe was expelled past my lips to float in the bowl like some limp, dead fish.

Like the other day. I get it into my head to do a little bit of a stir fry thing for lunch. I put the veggies in the pan, got some noodles to put in there, things were going awesome. It was going to taste delicious and be the best lunch I've ever fixed for myself ever. Not too mention the fact that it was healthy! Double points!Not too mention the fact that it tasted wonderful.

It tasted wonderful all the way to the bathroom where I then purged everything. I don't even think I made it all the way into the bathroom for that one. It's just a good thing I have decent aim.

After upchucking not just my meal, but probably everything I had eaten in the last seven years, I began to wonder how it was that I am still so fat. That's when it came to me.

Vegetables.

My meal was kind of healthy and apparently hard to digest. I don't think it's confirmed at all, but, my theory is that junk food is just easy to process since there's nothing to it but calories.

This makes me sad, I actually like vegetables and fruit.

Now, there's some question as to whether my vomiting is due to my gall bladder or not. The doctors were hoping having it out would solve the problem, but it might actually be due to my Imuran so they've also lowered that at the moment to see if it would help. It hasn't.

But I am well on my way to figuring out the possibilities of puking up your own bones!