Sunday, May 27, 2012

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?

Monday, May 21, 2012

Saying so Long to Dr. House

Alright, I know I've been a little dismissive of House in the past. Very often when they have included vasculitis in the episode there are many things that are wrong or are inaccurate. While this aspect is harmful to those of us with vasculitis because normal doctors do not exist in a vacuum and many of them, whether they want to admit it or not, watch medical dramas and are as likely as the rest of us to believe what they see on the tv.

On the other hand, House has done some good for vasculitis. They are the only show I am aware of that has consistently mentioned it and in their own way have brought the term to the outside. They have shown that, much like Lupus, vasculitis can mimic any disease and is something serious and should be taken seriously. I know of one person who realized how serious their condition was because they heard it mentioned on House. I have a friend who has noted how many times vasculitis is mentioned on the show. It's in his consciousness.

After many years, House is now coming to an end. The final episode is tonight so stay tuned and keep an eye out for billboards that mention the Vasculitis Foundation. Yes, the crew of House has contacted the vasculitis foundation so that in their last episode they can do one more thing to help spread the word about this group of rare diseases. Fitting that it should happen during awareness month!

Monday, May 14, 2012

Life and Such

I don't think I'd wish for anyone to ever have to go through the social security process. It's super stressful.

I have to go to a hearing in front of a judge to decide. I really need it for the medicare, in a few months I won't have any insurance and I really can't afford my doctors without insurance.

I thought about trying to go back to work with the kiddos, maybe I could get enough money to buy my own insurance, but that idea was vetoed. Instead, I think I am going to start up a photography business. I like taking pictures after all. I would mostly do candid photos of kids and pets, but wouldn't be opposed to doing event pictures too. This would at least help me get some income.

Think positive and outside the box. Usually you will come up with good ideas that way!

In more awareness news, I am trying to think of a t-shirt logo for the families and friends of people with vascultitis. There are shirts for the patients themselves to wear, but they don't necessarily work for the caretakers and supporters that don't have the disease but are effected by it anyway.

I've got to wrack my brains on this, any suggestions?

Wednesday, May 2, 2012

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."

Monday, April 23, 2012

Sneaky Sneaky

Alright, I can't remember if I mentioned it in the last couple of posts, but I was doing really well. So well, the doctors figured I could be let and only have to come in every other month instead of every month. But Wegener's is a tricksy sort of beast.

When no one is watching it, it has this nasty habit of jumping out of the shadows to bite your unsuspecting rump.

I kept telling myself that it was just allergies and yadda yadda blah blah blah, but it's not. It's a flair. I get to jump from 2.5 mg of Prednisone back up to 20 mg. DE-PRESS-ING.

It was funny too, I was talking to my rheumy and one of the symptoms I'd had was strange hives, I'd get actual welts that would burn and itch and then vanish. My rhuemy was like, "huh, that's not normally something you see with Wegener's, but Lupus... You're not allowed to have anything else though." The next day I had a mark on my forehead, it looked like someone had actually bitten my forehead. This red mark was there for a while but then went away too.

Don't worry, I'm not thinking I have lupus too. I think it's just a weird little vasculitis thing. Wegener's can go after the skin and all.  Of course, I can go around telling people I have lupus in my hand. Hand lupus!

Needless to say, I am now back on my monthly rheumy visit. It was good for one month off, I guess.

Thursday, April 5, 2012

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.

Thursday, March 15, 2012

Fighting the Good Fight

I've got a LOT to post about.

For starters- to all those people who are against insurance coverage for birth control I say, do you even know all of the many reasons women take it? I've only ever heard a few arguments against it, so please make me aware if I am missing some, that go like this:

Birth control is against my religion, so having insurances cover it violates my religious freedom. This is a lazy argument. It doesn't violate your religious freedom, you aren't being forced to take it! As my friend put it, if we feel that insurances covering birth control is a violation of the freedom of someone to practice their religion then so is selling pork in the stores. That's against the Muslim religion. It's the same principal people!

I don't want to pay for someone else to have sex. This is a failure to understand how insurances work. People are personally paying for insurance; it is taken out of a paycheck, personally purchased, or in the case of Medicare and Medicade it is something that everyone has paid into while they work. The only way you are going to be paying for it is if you buy it. You could argue about the Medicare/Medicaide thing, and insurance premiums but here is a response for that. You already are paying for someone else's sex. Insurance covers Viagra and Cialis and other erectile dysfunction meds whose sole purpose is to enable men to have sex. At least birth control has other, medical, benefits.

Women shouldn't be having sex so much and then they could afford birth control. This one stems from a basic misunderstanding about birth control entirely. Women's birth control is not like an erectile dysfunction medicine. It is not taken every time a woman wants to have sex. It is taken everyday. It doesn't matter if the woman is having sex or not. It functions by changing the hormone balance within the woman's body which takes time to work, thus, the pill is taken everyday.
The other issue with this argument is that it implies that women only need birth control to prevent themselves from having babies. This is not true. Women take birth control for a variety of reasons: To prevent cysts from developing on the ovaries such as in poly cystic ovarian disease, to help prevent certain cancers from growing such as cervical cancer, it also helps women whose periods are so severe that they cannot function. Sorry, cramps are painful and can be debilitating, some women lose too much blood during their period and become anemic, others end up having vomiting and violent mood swings which the birth control helps regulate. Lastly, women take birth control to prevent having babies.
I take it because, with all the other medications I am on, if I were to have a baby right now it would more than likely have some fairly significant disabilities and I tend to have very painful, heavy periods (tmi, I know). So, if you don't want to cover birth control, fine, but don't complain when you have to help support my potential children who are disabled.
(note, I am not trying to be offensive, but it is true. I would love my children no matter what.)

The next thing I wanted to talk about is that I was turned down for my own SSDI. I have appealed. I just thought the reasons that they gave me were hilarious, though. 1. I'm too young to be disabled (apparently, people under the age of 40 are impervious to becoming disabled. That's good to know!) 2. I hadn't been diagnosed for a year (okay, I'll give them this one- I hadn't officially been diagnosed a year at the time I applied, but my first ANCA positive blood test was two years ago when I had the sinus scars.) and 3. I have too much education (I like to think that this is because they feel I will find my own cure. I'm sorry that my attempts to better myself before I knew I had some terrible disease would count against me in the long run. If I'd known then what I know now I maybe wouldn't have bothered racking up $40,000 in student loans!)

Next up- I've received many a letter and phone call from the government peoples of my state about Rare Disease Day. I am persistent when I want to be. These have inspired me to now write a letter to President Obama. Not for anything special, but to let him know that May is Vasculitis Awareness Month and that I plan on holding an ice cream fundraiser. He is invited if he wants to come.

I guess I spoke about the last thing I wanted to talk about when I wrote about my letter, so, for now I guess that's it!

Oh! and here is the VF's new slogan since Susan G. Komen sued the old one away from us.

Wednesday, February 29, 2012

Happy Rare Disease Day!

Well, the day is finally here. Rare Disease Day.

I feel that I have done my part to get awareness out there. I made a video (I actually contemplated putting it up here, but then thought, "Who wants to see my ugly mug? Not me, that's for sure!"), I wrote my state representatives, I spammed people with my blog, I posted pictures, I gave a hands up to the Rare Disease page. Do you get the point? You should do some of this stuff too!

It was funny, though, I got a question asked of me today that was wondering why Rare Disease Day happens only once every four years. Doesn't that seem a little counter productive? How are we supposed to raise awareness if we only try every four years?

My response was: It's an annual event, but on leap year it's held on February 29th because that's a rare day.

Tuesday, February 28, 2012

Rare Disease Day pt: 4

Even after everything I have said about it, maybe some of you are still wondering, "What is so special about Rare Disease Day?" Well, I'll tell you what is so special about it.

This day is for some of the most special, rarest people out there and it takes place on the rarest day of the year. Rare Disease Day happens on leap year, February 29th. See, we're not so silly and we can do things that are meaningful. Get it, we have rare diseases and we hold our awareness campaign on a rare day?

Kidding aside, let's get down to more serious business guys. Well, maybe it's not going to be so serious.

Night before last I had a strange dream, as is common for me. The thing is, during this dream I was trying to explain what Wegener's Granulomatosis is to Dom De Luise. I'm not sure why.

Dead actors aside, I awoke the next morning with a mission. I sent out messages to EVERY representative from my state. All of them. The only ones I left out were the ones that wouldn't let me send them messages. This is what I sent:

Are you aware that Wednesday, February 29th is Rare Disease Day? I am. I suffer from a rare autoimmune disease called Wegener's Granulomatosis wherin my immune system attacks the blood vessels throughout my body. It effects less than 1 in 200,000 people and is considered a rare disease. There is no cure and no disease specific medications for patients to use. Very little research is being done for this disease.

Rare Disease Day is an international event started by EURORDIS and has become an annual event. The goal of this day is to help raise awareness.

Can you help me raise awareness and, hopefully, research for my disease and many others by showing your support of those that live with a rare disease?

I finished the message by thanking them and giving them the link to my blog.

Well, today I got two responses back! One from the Governor Herbert and another from Senator Lee. They weren't automated responses either! It pleases me to think that I might be doing something to help others get the help they need and to know I am doing my part for Rare Disease Day!

You can do your part too, you don't need to donate money. Check the link rare disease day to see what you can do to help!

Edit: just found this- you can sign up from anywhere to help send a message to President Obama and Congress  Let them know that this is important to you!

Monday, February 27, 2012

Rare Disease Day pt: 3

Wegener's Granulomatosis is considered a rare disease. It effects less than 2 in 200,000 people and is one of the most common forms of vasculitis. The rarest form, I believe, is CNSV or Takayasu's which effects less then 1 person in 1,000,000 (I believe, these numbers may be off).

If you can't tell, Rare Disease Day is important to us. Please stop and watch this video.

On thinking about what I, personally, can do for Rare Disease Day I am thinking of taking select entries from my blog and compiling them into a book which I can publish through the kindle. We will see how it turns out. I don't think I will be able to get it out by Rare Disease Day, but we can see!

Saturday, February 25, 2012

Rare Disease Day pt. 2

Alright folks, here's the download.

For Rare Disease Day (save the date, it's the 29th) you may have other things planned, seeing as how it's leap year and all that. I'm not aware of any big howdidos on the leap year, but any excuse to have a party, right?

Anyways. Take some time from your busy Leap Year party schedule to film your story (if you have vasculitis or are a caretaker) that explains how vasculitis has affected your life. The films are due by the 29th and you can see all the rules here. 

The theme is "Helping Extraordinary People Live Extraordinary Lives"

Have fun and tell your story!

Thursday, February 23, 2012

Rare Disease Day

Rare Disease Day, February 29th, 2012

In less than a week, 6 days to be precise, on February 29th the world will celebrate Rare Disease Day. This is a day wherein those of us with diseases that don't have the support of governments and the public can speak out in the hopes of gaining a little bit of recognition for our struggles.

This day will hopefully bring about more people becoming aware and more people (including insurances) coming to recognize what it is to live with a rare disease. As of right now the cost for Wegener's Granulomatosis is extremely high.  "Systemic vasculitis is often life threatening and likely to produce disability or death. For example, in the case of Wegener’s granulomatosis, approximately 1500 patients are hospitalized for this illness in the US every year. Eleven percent die in the course of hospitalization, 31% become totally disabled in performing their usual occupation and 20% become partially disabled over 5 years from the time of disease onset. Between loss of personal income and hospitalizations, Wegener’s granulomatosis alone costs our health care system and patients over $40 million per year. This figure does not take into account the loss of income that results from an 11% mortality rate among hospitalized patients with this illness (Hoffman GS et al. Arthritis and Rheumatism. 41:1998; Cotch et al.: Arthritis Rheumatism. 39:1996)." (

With more awareness these numbers may shrink. Less people will die needlessly  from this disease and fewer people will become wholly or partially disabled as more doctors come to recognize the symptoms and learn what tests need to be done. We can even hope that newer treatments will become available; treatments that are less toxic, and closer to a cure. 

For this fifth annual Rare Disease Day, the theme is solidarity. Activities started by different awareness groups around the world are going to converge on the idea that we are "Rare but strong together". All we are asking for people is to spend five minutes on this day to reflect on what it might be like to have a rare disease. To think about those you know that may have a rare disease, and to maybe come up with an idea about how you can help.

  Edit: I was actually just clued into this little tasty bit If you go to this link and click on the Raise Your Hand button, one dollar will be donated to rare disease research!

Saturday, February 11, 2012

Supply and Demand

So, how many of you have heard of the drug shortages that are going around lately?

Probably not many, unless you need one of these drugs most people aren't much interested. Well, methotrexate is one of these drugs that is now in short supply. In short enough supply that hospitals are panicking about how they are going to treat some things such as cancer.

Vasculitis is also treated with this medication. It is one of the very few approved drugs for managing the symptoms of various forms of vasculitis.

There are only four companies that produce methotrexate (mtx) for the United States and over the past few months they have all said that they are going to "voluntarily suspend production" of mtx due to quality concerns. This has left patients with very few options when it comes to getting the medicine that they need to survive. I know of some people that are trying to hoard it, others are probably thinking about switching to one of the other two medications available to use for keeping vasculitis stable.

The problem with this is that, not all patients have the same reaction to each of the medications. Some people don't do as well on Cellcept or Imuran as they do on mtx. These other two options might not work for some patients.

Now, I am all for increased quality control for the drugs people are given, but I am kind of skeptical of the quality excuse. My skepticism comes from the market. As more people demand the drugs they need to survive, the drugs that they can't live without, the companies are able to charge more. These patients don't have any other option but to pay.

I am of the opinion, paranoid I may be, that if the companies were only concerned about the quality of the drugs they were producing they would have fixed the problem with it by now and would have had production of mtx resumed.

It's not like they were trying to make a completely new drug, they were working on an old drug, a drug that was tried and true, to hopefully improve it. Why has this taken so long?

It is sad that we live in a world where lives are not valued more than someone's ability to make a profit.

I want to keep following this story, I hope I am proved wrong in my paranoid assumptions, but until I am proven wrong they will stand as they are. Please stand up and see what you can do to help with this situation. I don't want to see any more of my friends die.

Friday, February 3, 2012

Fighting for the Right to Cure

Why is it that once a charity becomes big they lose sight of what is really important and focus on dragging down other charities that are working towards the same goals?

I know right now the big broohaha for the Susan G. Komen foundation is that they took funding away from Planned Parenthood which means that thousands of lower income women are not going to be able to get scanned for breast cancer. This happened because, according to SGK, Planned Parenthood is under federal investigation. An investigation that many people consider to be a waist of time. Not to mention the fact that SGK is still giving funding to Penn State even though they are also currently under federal investigation.

No, SGK really took away the funding because their current president is playing the political field. The funding has been taken away because of the political favorite pop question of abortion and a woman's right to choose. It is no secret that Nancy Brinker falls in line with the extreme political religious right that is trying to squash women's right to their bodies.

Just today, though, SGK reversed their decision. Of course, what they really said was that Planned Parenthood would not have to give back the funding they already have, while they are free to apply for a new grant from SGK it is unlikely that they will get one.They weren't even really apologizing, they were backpeddling. They didn't want to lose public face.

Of course, the good thing about this is that Planned Parenthood has seen several large donations come from people and groups that have never donated to them before. On the flip side, so has SGK.

SGK is getting more money from the political side that is against abortion because apparently these people have forgotten that breast cancer and abortion have no correlation and the grants being given to Planned Parenthood were earmarked for mammograms and breast care health. Apparently these people are pro-life except for when it comes to low income women that have cancer.

Something that has not really been addressed, though, is that SGK has been a charity bully for years and this is where this post connects with vasculitis and Wegener's. They have this habit of looking for any other charity that uses the words "the cure" in their slogans and spending donated money on millions of dollars worth of legal fees to get these groups to change their slogans. This is what happened to the VF last year. Our slogan used to be "Sticking Together for a Cure" but now we don't have one.

Some of these charities are very small and the ensuing legal  battles put them under. SGK also goes after any charity that uses the color pink. It's completely fine that they stole the idea for ribbons from the AIDS Foundation, though.

Susan G. Komen has forgotten what it is to be a charity. This is why they are so focused on putting out pink product, many of which that contain carcinogens that help cause cancer. They are more interested in making money for themselves and getting name recognition than actually helping people that are in serious need of it. I am almost glad that the real Susan G. Komen is no longer with us so she can't see what has become of the charity set up in her name.

These other groups are trying to help people. They are trying to raise research money, sometimes for breast cancer, sometimes for other cancers, sometimes for disease that are little known and have higher morbidity rates than all cancers. To paraphrase Colbert, these people can be saved, fixed, or healed, but don't cure them.

I guess it doesn't matter, though. So long as SGK can still make their money and support their political agenda.

Sunday, January 29, 2012

Cleaning up the dictionary

There are a few words in Vasculitis vocabulary that need to be removed completely or to have their definitions solidified within the community so that everyone knows what everyone else is talking about. Patients need to be able to understand what a doctor means when they say a certain thing and doctors need to decide what language they are going to use when it comes to describing aspects of these diseases to each other.

One of the first ones that needs to go completely and as far as I know is Wegener's Specific is the term limited. When a doctor tells a patient that they have limited Wegener's it usually means that they have no kidney involvement. The problem here is that a lot of doctors also seem to feel that, if there is no kidney involvement, then the disease is not serious or not as life threatening as a disease path that does effect the kidneys. This is in no way true. It is possible to live with kidney damage through dialysis and as far as I am aware, a kidney transplant is a lot easier than, say, a lung transplant.

Just because the disease is not active in the kidneys does not mean it is not life threatening. Someone on the Vasculitis Boards put it this way, "We don't tell someone that they have limited cancer just because it hasn't spread to anywhere other than the breast, or the colon, or the skin." Limited should not ever be used.

Another term that needs to be determined as to what exactly it means is remission. It appears that each doctor has a different idea about when a person goes into "remission". Other doctors, and these are the ones that I tend to agree with, don't even use the term remission because it gives off the idea that the patient is somehow cured of this disease. I have a personal example of this. My grandmother has a hard time understanding that what I have will never really go away. It will always be there. For the longest time she would ask me why I didn't just go to the hospital and get some strong antibiotics, even if I had to stay there for a while. Finally, I got her to understand that being in the hospital was not what I needed. Now that I am getting back good blood work finally she now feels that I have been cured and am "in remission".

I prefer instead to use the term quiet. This conveys the idea that the disease is not active at this time, but leaves open the very likely possibility that it will become active again.

Along these same lines, doctors need to decide what the difference between a flare-up and a relapse are. Some people have said that their doctors say a flare-up is when there is minor disease activity while a relapse is severe. Others use the two terms interchangeably.

It is hard enough trying to find doctors to treat vaculitis, but then if you happen to go to more than one doctor and they each use different terminology then the patient can become confused about how their illness is responding and how they are physically doing.

Thursday, January 19, 2012

Brains, why for you no work not good no more?

Here I am, 90 some odd days out from applying for SSI and I haven't heard a word yet. I decide that I should call and see what's going on as they have between 90 and 100 days to decide.

After spending a few moments trying to remember where it was that I wrote down my case worker's number I finally called and it turns out that he was out for the day. "I'll just leave a message I tell myself." This would require me to leave my name, phone number, and social security number. I give my name, and my phone number, then came the apparently difficult part. "843-92-.... uh......" (obviously these aren't the real numbers to my social- I haven't progressed that far into dementia that I would do something silly like that, but I wouldn't put it beyond possibility that I might now decide that this is my number). Finally, I remembered the last four digits and hung up the phone.

Maybe this will help them decide better that I can't work? I mean, I struggle to remember a number I've written on every form for college, many, MANY recent medical paperworks and is the same number I've had since forever. Eh. Maybe once I'm off the prednisone my brain will come back.

Monday, January 16, 2012

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.