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.
Monday, April 23, 2012
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.
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.
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.
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 http://rarediseaseday.us/take-action-now/handprints-on-the-hill/ 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!
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!
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!
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