That Moment When....

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




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

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

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

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

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

It's this one

31 Days (Facts) of Vasculitis

For this awareness month I thought I'd play a game of sorts.

I am going to list 31 facts about vasculitis and each fact will have a corresponding note card that I am going to leave somewhere in public or hand to someone or what have you! Each note card will have one fact about vasculitis on it and a link to this blog.

I am hoping people will visit and pass the cards along to others and in this way help me raise awareness! 

If you want to play along, write out your own note cards and play the game in your area! Put a link to this blog and take pictures of your cards if your going to play. I hope you will help us in raising awareness for Vasculitis!

1. Vasculitis is an umbrella term for a group of autoimmune disorders that effect a person's blood vessels. From the smallest capillaries to the largest aortas.

2. Vasculitis is treated using drugs that decrease inflammation and weaken the immune system. These drugs include forms of chemotherapy, steroids, and others.

3. Different pea of vasculitis were featured on the tv show 'House' on many different occasions.

4. There are between 14 and 20 different types of vasculitis, each effecting different veins and organs. 

5. Each type of vasculitis involves inflammation of the blood vessels which causes the walls of the vessels to thicken, weaken, scar, and narrow which all work to decrease the amount of blood that is able to circulate.

6.Vasculitis has no cure, it is something a person will never be rid of.

7. The goal of treatment in vasculitis is to put a patient into a quiet state where the disease is not actively attacking the blood vessels.

8.  Patients with vasculitis see a rheumatologist; the same type of doctor people with lupus or rheumatoid arthritis see.

9. Not all rheumatologists know about vasculitis, so it is important for someone with vasculitis to contact an expert in vasculitis.

10. People with vasculitis may not look sick, even when they are experiencing episodes of active disease.

11. Sometimes, diagnosing vasculitis can be extremely difficult. There are no standard blood tests for it and if a biopsy is not done in the exact right spot it may not show signs of vasculitis.

12. Vasculitis is good at mimicking other diseases, making it even harder to diagnose or determine if a patient is having a flare.

13. The treatments for Vasculitis involve large risks to a patient's health as well.

14. Vasculitis can effect anyone of any age, gender, race, economic status, or country.

15. There are a couple of types of vasculitis where the cause is suspected to be an infection or an allergic reaction, but for the most part the cause of vasculitis is unknown.

16. The most common form of vasculitis is Granulomatosis with Polyangiitis (GPA) which mostly effects small and medium sized vessels and arteries in the kidneys, lungs, and upper respiratory tract, though it is not strictly limited to these areas.

17. Vasculitis makes a person more susceptible to blood clots and strokes.

18. Vasculitis makes a person more susceptible to aneurysms.

19. Vasculitis can cause a person to have permanent organ damage.

20. Vasculitis and it's treatments can make a person much more susceptible to infections.

21. Large vessel vasculitides include Giant Cell Aerteritis, Takayasu' s Aerteritis, Kawasaki' s Disease and Polyaerteritis Nodosa.

22. Medium vessel vasculitides include Kawasaki' s Disease, Polyaerteritis Nodosa, Microscopic Polyangiitis (MPA), Granulomatosis with Polyangiitis (GPA), and Eosenophilic Granulomatosis with Polyangiitis (EGPA).

23. Small vessel vasculitides include IgA Vasculitis, Cryoglobulnemia,Leukocytoclastic vasculitis, MPA, GPA, and EGPA.

24. The Vasculitis Foundation is the leading resource for people with vasculitis.

25. The Vasculitis Foundation has a list of vasculitis experts that are willing to consult with doctors about patients for free.

26. The actor/ director Harold Ramis (known for playing Egon in 'The Ghostbusters') passed away due to complications of vasculitis.

27. Because vasculitis is rare, treatments are often taken from research into other types of autoimmune disorders.

28. The 1956 movie 'Bigger Than Life' is about a man diagnosed with Polyaerteritis Nodosa who is given prednisone.

29. The Vasculitis Foundation was supposed to have a billboard shown in the last episode of 'House' but the scene ended up cut.

30. Vasculitis can be deadly if it is not treated correctly.

31. Patients with vasculitis that are receiving proper treatment can live full lives.

Happy New Year!

I hope everyone is having a nice new year so far! I haven't done much. I know I keep harping about a surprise, but to be truthful I haven't had time to work on it all December!

Now that the new year has begun it's time to get back to work!

In other news, this whole hospital change my rhuematologist made has been such a pain. I've been trying to get three prescriptions filled for over two weeks now. I've been out of them for that long (I did get an emergency supply from the pharmacy but have been out of that for two weeks). The pharmacy hasn't heard anything back from my doctor.

I called his office today and after waiting on hold for 15 minutes I finally get to talk to the receptionist lady who asks me what the problem is. I tell her I have been out of several prescriptions for two weeks and the pharmacy is saying that they are waiting on confirmation from my doctor. I wanted to know what the hold up was.

Apparently, no one in his new office thought to even let him know I had been trying to contact him and the pharmacy had been faxing for refills! Two weeks! Two weeks all of this stuff has been with the office and the front end staff have been ignoring it. All I could get from her is that she would put an alert on the paperwork that says it's urgent.

So I still get to wait. In the mean time I'm stuck suffering from headaches and withdrawal/shock symptoms from the anxiety med that I have been out of. It's not the type of drug that you can just stop and I have essentially been forced to do just that. And I've had to struggle along without having pain medication which is really cutting down on my sleep which just makes the anxiety that much worse!

I am not pleased with his new office staff. I miss the days where I knew all of the staff by name and knew that they would do just about anything to help and would stay on top of things.

I guess that's what happens when you go from a small, private office to a big University hospital.

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!

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!

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!

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.

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!

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.

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.

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

Throw Back Thursday?

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

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

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


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

Rituxan infusion number 2

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


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

Now you know!

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

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.

Medical Science

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

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

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

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

This is why education and awareness is so important.

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?