I know, I know, I said that I would be spotlighting the other 15 forms of vasculitis next, but I have a chronically short attention span (I can blame this on the chemo and Pred right now so those of you that knew me pre-diagnosis can keep all comments to yourself!) and this little tidbit of information caught my eye right now. I will get to the rest, but for now I want to talk about this documentary that was recently a big buzz on the Vasculits forums.
This is the extended trailer for the documentary Fat, Sick & Nearly Dead
What made this such a controversy on our boards was someone posting the trailer. This person joined our group, even though they do not have Vasculitis (the two men in the video that made the documentary do) and claimed that he was doing this in order to help support "awareness". Awareness is a BIG issue for those suffering from Vasculitis as these diseases are so rare that most doctors don't know anything about them, we try to get as much awareness out there as we can so that we can hopefully get more research funding and finally end up on the spectrum where we are not more knowledgeable about our diseases or conditions than the doctors are.
Upon further investigation, it was discovered that this man was a stealth marketer, leading our board managers to decide that he really did not care about spreading awareness as he was actually selling the juicer and diet that is featured in this movie. I am not going to say one way or the other about if he cared to help spread awareness, as I do not personally know this man. But I do agree with the decision to ban him and delete his post, he was trying to sell us something. Something that for many members of our group could be dangerous. What he didn't say in his original post was that, the only symptom this man was experiencing at the time was a rash, a rash that probably would have gone away on its own anyways. He did not have life threatening organ involvement like many of the rest of us on the board. The person who posted the video also mentioned, and it is a very prominent tagline for the movie, that Joe Cross (the guy who made the documentary) was able to get off all of his medications through this diet.
The diet consists of 60 days of nothing but fruit and vegetable juice. It works really well to help a person lose weight, but for many of us that have Vasculitis, it is probably not a good idea to go on this long term or to try it at all without a doctors consent and close monitoring. Chemo has the tendency to cause anemia, which can be impacted by the choices in vegetables you would be using, and Prednisone causes diabetes which the fruits can greatly impact as they are full of sugars, natural or not.
Of course, many of the members expressed an interest in the diet and the video. Some had even gone so far as to order the diet already. Who wouldn't want to get off their medications? I know I would! I hate them and I hate what they have done to me. On the other hand, I generally like living so I will continue to take them as prescribed.
Some of the members got mad that the original post was deleted and the original poster banned, but I do think that it was probably a good thing that this was done. This man slid into our group, a place that is safe for us, and tried to market a potentially dangerous product to a group of people that would jump on a "miracle cure". I don't think that there would be many of the board members who would have started the diet without consulting their doctor first, but even if one person took it to heart and jumped at this diet to the detriment of their health it would be one person too many.
Not everything that came from it was bad, though. There has now been a lot of discussion on the topic coming from actual Vasculitis patients. Some of the members have re-posted links to the trailer, which is fine because now it is coming from a place of "Should I try this" or "I am going to discuss this with my doctor and this is what they have said". This has also brought up more conversations of member's diets and what they currently do to help minimize side effects and help their bodies heal. This is a dialogue that is good, I am happy to see it. But I also think that it was good that the original poster was deleted and banned, it made the conversation more of a topic than it would have otherwise. If that makes sense?
If the original post was left intact, then the conversation would have faded out without as many people seeing it. Because some members were angered about the deletion, it brought more controversy and kept the discussions going as people tried to explain the pros and cons. I know the diet is not something I could do, I struggle with iron and B-12 levels already and have my entire life. I need to eat me some meat or I would die.
I haven't seen the documentary yet, it was recommended to me on Netflix a few weeks ago and now that I know more of what it is about I am a little paranoid that Netflix is spying on me. Why should it come up, I don't normally watch documentaries and to send me one that is highly specific towards my own situation.... But that should be left for another rambling and highly paranoid post. A post which I will also probably blame on medication induced brain issues.
Thursday, July 28, 2011
Monday, July 25, 2011
Anti-Neutrophragalisticexpialadocious
Anti-Neutrophilic Cytoplasmic Antibodies, better known as ANCA's to those of us with diseases that have them. There are three different types of vasculitis that have these special little antibodies present, in most cases the presence of these are used as a diagnostic tool which helped save me from having a lung biopsy. These little buggers are also known as autoantibodies because they differ from regular, helpful antibodies. Bet you can't guess how they differ exactly.
Auto means self. So these autoantibodies do what regular antibodies do but against the self. Yes, if you have Wegner's, MPA (Microscopic Polyangitis) or Churg-Strauss Vasculitis your body has created antibodies just for the purpose of harming your own personal cells.
Of course, you could also have one of these diseases and not have these autoantibodies present. Is anyone else reminded of the Transformers? Autoantibodies, form up! No, wait, don't! I might die!
There are specific types of ANCAS associated with these different vasculitis types. Wegner's is a C-ANCA (80% of patients test positive. I test slightly positive, sometimes, when I'm not testing positive for a different ANCA). Oddly enough, Wegner's shares this ANCA with mad cow disease. At least, that's what I've heard. Wegner's can also test positive for a P-ANCA, the same ANCA associated with Lupus. Does this mean I'm a Lupy Cow instead of a Mad Cow?
Anways, these are the three types of vasculitis that are associated with ANCA so I figure that it would be a good place to start introducing the other 15 forms of vasculitis. Starting with MPA and then probably Churg-Strauss and moving on from there. I feel it is important to try to understand the different forms of vasculitis as a patient with Wegner's because it is A) possible to have more than one type of vasculitis B) having one autoimmune disorder makes you MORE likely to have another and C) while different, each type of vasculitis have their similarities.
Auto means self. So these autoantibodies do what regular antibodies do but against the self. Yes, if you have Wegner's, MPA (Microscopic Polyangitis) or Churg-Strauss Vasculitis your body has created antibodies just for the purpose of harming your own personal cells.
Of course, you could also have one of these diseases and not have these autoantibodies present. Is anyone else reminded of the Transformers? Autoantibodies, form up! No, wait, don't! I might die!
There are specific types of ANCAS associated with these different vasculitis types. Wegner's is a C-ANCA (80% of patients test positive. I test slightly positive, sometimes, when I'm not testing positive for a different ANCA). Oddly enough, Wegner's shares this ANCA with mad cow disease. At least, that's what I've heard. Wegner's can also test positive for a P-ANCA, the same ANCA associated with Lupus. Does this mean I'm a Lupy Cow instead of a Mad Cow?
Anways, these are the three types of vasculitis that are associated with ANCA so I figure that it would be a good place to start introducing the other 15 forms of vasculitis. Starting with MPA and then probably Churg-Strauss and moving on from there. I feel it is important to try to understand the different forms of vasculitis as a patient with Wegner's because it is A) possible to have more than one type of vasculitis B) having one autoimmune disorder makes you MORE likely to have another and C) while different, each type of vasculitis have their similarities.
Tuesday, July 12, 2011
The "D" Word
Which 'D' word is that, you might ask. There are plenty of words that start with a 'D' both lower and upper case, but I am here only referring to one singular 'D' word. And it isn't Damnation or any variation there of.
No, that 'D' word is..... Dating.
It was bound to come up sometime. I am a reasonably undisfigured 24-year-old female, I have every right to think about dating (so do those reasonably and unreasonably disfigured 24-year-olds for that matter. I don't really care, I actually encourage you!).
Alright, dating isn't really easy on most people. It's can be unpleasant and awkward. You might not know what to say, you might make an idiot of yourself and so many things can go wrong in so many places that it might not ever seem worth it to try again. But, as a social animal we do continue to try, somewhat, it's just the way things go.
So, let's just say that prior to diagnosis I was doing fair in the dating department. Even went out with the same guy more than once (which is somewhat of an anomaly in my dating stats) but things didn't work out. It was more me than him, and I partially blame me getting sick for some of it. You see, around the time he wanted to start picking things up, I was starting to feel really crappy (fatigue, chronic hacking cough, aches, pains, a general lack of walking ability. You know, the sort of things every 90 year-old woman should feel.... wait). I didn't really want to go out and do things, he did. There were other things too, but they aren't relevant here.
That's why I find myself currently single. You might tell me that, 24 is still young, but believe me when I tell you that, in the state of Utah I am an old maid. Social state standards estimate that I have maybe one more year before I should pack it up for good and consider myself undateable/unmarriagable. I should have taken care of this before I was out of high school, what was I thinking, wanting to go to college, that's a man's privilege.
Okay, so it's not really that archaic, but only just barely.
If you are anywhere in a similar situation like me, you've probably looked up online about dating with a chronic illness. You probably also found that their information was terrible and no help! Unfortunately, they are right.
Dating with a chronic illness can be a tricky beast. There are some added worries that can sneak in there. Not only should I be questioning what date I should mention my crazy cat collection on, but I am also having to wonder about when it will be appropriate to mention that, oh yeah, I have this little problem.....
Of course, it is entirely possible that this worry can resolve itself, say, if I happen to sneeze on the date or something. Because for me, sneezing usually makes me bleed and I kind of think that's something my date might notice. I could just say that I have a raging cocaine addiction, but that would open a whole other can of worms. It would also be lying and everyone knows that relationships based on lies never last.
Another thing that a chronically ill person has to consider, depending on if they take medications or not, is when they can go out. I take my pills at night, so I can solve this problem by taking a quick dart into the powder room, that is, if my date drove me. Some medications have stipulations on them that you aren't supposed to drive after taking them, you know, those silly little warnings.
There are also certain activities that I am forced to limit myself too. Long days outside are pretty much out of the question unless I am prepared with sunscreen, an umbrella and better yet, a building to block the suns deadly deadly rays. Fatigue is a big problem too so you have to make sure that you rest up before hand.
It can be hard for the dater, too. You are all expecting fun dates and sometimes this other person just does not want to do anything other than lay about. Sometimes the reaction is to think that this person is lazy, specifically since vasculitis, while debilitating, does not often make a person actually look sick. This is why my illness must be explained, but probably not on the first date. It's a thing that needs to be judged personally. Or maybe tattooed to my forehead, since that would save me a lot of talking.
I decided to attempt dating again, post diagnosis, and that I would decide when to tell whomever it was when it felt right to me. I even went so far as to join one of those dating websites and I got a few hits which were a much needed boost to my self-esteem. One of them even progressed far enough to a date, a coffee date, which I was nervous for. I had so many thoughts in my head: What if we hit it off? When should I tell him about my disease? What if partway through I get sick? Please don't let me eat anything that's going to make me throw-up! What if he wants to go out again? What should I do!?!?!?
None of it mattered, I got stood up. All the anxiety and worry for nothing. Well, nothing except to give me a firmer idea of how I'll handle a future date.
Now, if I were a firm believer in signs, I would have taken the hint, but I am intentionally oblivious to things (note: see the first three posts) so I'm gonna climb back up in that saddle and give it another go!
Friday, July 8, 2011
Politics Leaks in EVERYWHERE
As a person with a newly diagnosed, chronic and currently incurable disease I have had to change some of my perspectives and become more aware of certain issues that previously I probably would not have worried about before. Not many 24 year olds would ever really stop to think about the possibility that they might not be able to work and that they might have to rely on government assistance in order to get by.
Currently, I am still capable of working and I plan on staying that way as long as possible. But the realities of my situation are such that I will more than likely have to go on disability, it's no guarantee, but there is a high possibility that I will not be able to work full time or at all somewhere down the line. Of course, if things in the political arena don't settle down I might have to continue working longer than what my health will allow, either that or become completely dependent upon the kindness of my parents.
From what I have been told by many of my new acquaintances from the Vasculitis Foundation (many of which rely on Social Security and Disability to live) and from what my own snooping about on the intrawebs has found is that, in order to appease the Republican party President Obama put Social Security cuts on the table in order to have a way to bargain for a raise in the debt ceiling.
In all honesty, he probably explains things better than I and *gasp* he's actually in Washington!
If these cuts were to go through, many of these people will lose any way they had to support themselves. For me, this means that if the time comes where I can no longer work due to my Wegner's then I will not have the option of Social Security or Disability to fall back on.
It saddens me that a program that our citizens pay into so that they can have something, even if it is only a little, to rely on in a time of crisis, is one of the only ways that our President has to bargain with the Republicans. This is not the first time that cuts on Social Security have been used as a bargaining tool and it is always being used in cases where the Republicans are unwillling to work with a Democratic president. I hate the fact that these big time politicians use their citizens' lives, yes, cutting this program would be paramount to executing the people that need it, so flippantly.
For once, can these so called leaders in our country look out for the benefit of the ENTIRE country, not just the richest? Can we not all see that we need to raise the debt ceiling? Can we all not see that it is possible to accomplish this by cutting spending in crap programs? Here's an idea, why don't we close some of the tax loopholes that the richest people in this country take advantage of? Why don't we lower the salaries of the big wigs up in Washington? That would help us get rid of some of our deficit. But no. We have to squeeze the little guy, those people that can't do for themselves, those that need the help the most.
Each time that cuts in Social Security are brought up, it is met with great resistance from the public. One way that you can help resist is by writing your congressman, or senator, or representative. You can also sign this petition http://pol.moveon.org/bad_debt_deal/?rc=bad_debt_deal_letter.fb.v2.g1
Maybe we need to do more than that. Maybe we need to use our powers as the people and vote the whole bunch out. Let's get some people in there who actually want to see life in our country get better for everyone. Remember, the government should fear the power of its public, not the other way around.
In other news, the VF is doing a survey to help improve its website http://vf-survey-july-2011.questionpro.com/ once you complete this survey you can enter to win a years membership to the Vasculitis Foundation or a t-shirt, and who doesn't like t-shirts? If you're a person with one of the 15 types of Vasculitis, a family member or friend of a person, or maybe just that really nosy co-worker or neighbor that looks up odd conditions that their cubicle partner or house next-door-er suffers from. You could even be that person who looks up odd diseases on the internet and then decides that they have them. But the point is, if you've been to the site, take 10-15 minutes to help them improve it.
Currently, I am still capable of working and I plan on staying that way as long as possible. But the realities of my situation are such that I will more than likely have to go on disability, it's no guarantee, but there is a high possibility that I will not be able to work full time or at all somewhere down the line. Of course, if things in the political arena don't settle down I might have to continue working longer than what my health will allow, either that or become completely dependent upon the kindness of my parents.
From what I have been told by many of my new acquaintances from the Vasculitis Foundation (many of which rely on Social Security and Disability to live) and from what my own snooping about on the intrawebs has found is that, in order to appease the Republican party President Obama put Social Security cuts on the table in order to have a way to bargain for a raise in the debt ceiling.
In all honesty, he probably explains things better than I and *gasp* he's actually in Washington!
If these cuts were to go through, many of these people will lose any way they had to support themselves. For me, this means that if the time comes where I can no longer work due to my Wegner's then I will not have the option of Social Security or Disability to fall back on.
It saddens me that a program that our citizens pay into so that they can have something, even if it is only a little, to rely on in a time of crisis, is one of the only ways that our President has to bargain with the Republicans. This is not the first time that cuts on Social Security have been used as a bargaining tool and it is always being used in cases where the Republicans are unwillling to work with a Democratic president. I hate the fact that these big time politicians use their citizens' lives, yes, cutting this program would be paramount to executing the people that need it, so flippantly.
For once, can these so called leaders in our country look out for the benefit of the ENTIRE country, not just the richest? Can we not all see that we need to raise the debt ceiling? Can we all not see that it is possible to accomplish this by cutting spending in crap programs? Here's an idea, why don't we close some of the tax loopholes that the richest people in this country take advantage of? Why don't we lower the salaries of the big wigs up in Washington? That would help us get rid of some of our deficit. But no. We have to squeeze the little guy, those people that can't do for themselves, those that need the help the most.
Each time that cuts in Social Security are brought up, it is met with great resistance from the public. One way that you can help resist is by writing your congressman, or senator, or representative. You can also sign this petition http://pol.moveon.org/bad_debt_deal/?rc=bad_debt_deal_letter.fb.v2.g1
Maybe we need to do more than that. Maybe we need to use our powers as the people and vote the whole bunch out. Let's get some people in there who actually want to see life in our country get better for everyone. Remember, the government should fear the power of its public, not the other way around.
In other news, the VF is doing a survey to help improve its website http://vf-survey-july-2011.questionpro.com/ once you complete this survey you can enter to win a years membership to the Vasculitis Foundation or a t-shirt, and who doesn't like t-shirts? If you're a person with one of the 15 types of Vasculitis, a family member or friend of a person, or maybe just that really nosy co-worker or neighbor that looks up odd conditions that their cubicle partner or house next-door-er suffers from. You could even be that person who looks up odd diseases on the internet and then decides that they have them. But the point is, if you've been to the site, take 10-15 minutes to help them improve it.
Monday, July 4, 2011
Side Effects May Include the Following
I might be weird, but I've always been one of those people who read about the drugs they were given by the doctors. To me, it's just common sense. I want to know what I'm going to be doing to myself as I ingest these chemicals.
Reading about (and experiencing) drug side effects has really shown me the truth behind the saying, "Sometimes the cure is worse than the disease".
I already whined about the potential for weight gain that comes from taking Prednisone, but that's just one of the great things that particular drug can do. Osteoporosis seems to be common, it can also cause diabetes, high blood pressure and mood swings.
Anger, rampant horrible anger at small little things swiftly followed by jags of crying that are unconnected to anything going on anywhere. It's almost like someone is playing those sad puppy and kitten commercials with Sarah McLachlin songs on repeat in my head! Now I'm a wibbling mess and there's no real reason for it.
I guess the good news is, when the mood swing comes back around I can be all happy and perky and filled with sugary sweetness. That is, until something pisses me off again. Rage dinosaur activate!
Prednisone also likes to cause night sweats. Which, because I am on Prednisone, frustrate and anger me. I don't like waking up all sweaty, specially when I know that nothing particularly fun has gone on.
All of these emotional roller coasters really exasperate and tire me out. Of course, this same drug has caused me to be a little hyper sensitive to touch. Hugs hurt, kicking water hurts, seriously, it does, I really don't want a massage. On the other hand, I do want a massage because I hurt so much. It's a viscous cycle.
On the plus side, though, this drug helps keep my swelling down. I feel that it does this by taking the swelling from my important parts, such as my organs and moving it to my stomach and face. That's my excuse for looking like the Stay-Puft Girl, what's yours?
I guess I also have to give the Prednisone some props for keeping me going these past almost 7 months as I tried to come off it and found out that the methotrexate I was taking was not doing enough to suppress my immune system. Now I'm on a new chemo which also has a ton of side effects, but I, and you have probably lost focus for now.
I bet you're still all teary from the commercial up there. It's a sad commercial.
Reading about (and experiencing) drug side effects has really shown me the truth behind the saying, "Sometimes the cure is worse than the disease".
I already whined about the potential for weight gain that comes from taking Prednisone, but that's just one of the great things that particular drug can do. Osteoporosis seems to be common, it can also cause diabetes, high blood pressure and mood swings.
Anger, rampant horrible anger at small little things swiftly followed by jags of crying that are unconnected to anything going on anywhere. It's almost like someone is playing those sad puppy and kitten commercials with Sarah McLachlin songs on repeat in my head! Now I'm a wibbling mess and there's no real reason for it.
You watch that video and try not to tear up! And support your local SPCA or ASPCA
I guess the good news is, when the mood swing comes back around I can be all happy and perky and filled with sugary sweetness. That is, until something pisses me off again. Rage dinosaur activate!
Prednisone also likes to cause night sweats. Which, because I am on Prednisone, frustrate and anger me. I don't like waking up all sweaty, specially when I know that nothing particularly fun has gone on.
All of these emotional roller coasters really exasperate and tire me out. Of course, this same drug has caused me to be a little hyper sensitive to touch. Hugs hurt, kicking water hurts, seriously, it does, I really don't want a massage. On the other hand, I do want a massage because I hurt so much. It's a viscous cycle.
On the plus side, though, this drug helps keep my swelling down. I feel that it does this by taking the swelling from my important parts, such as my organs and moving it to my stomach and face. That's my excuse for looking like the Stay-Puft Girl, what's yours?
I guess I also have to give the Prednisone some props for keeping me going these past almost 7 months as I tried to come off it and found out that the methotrexate I was taking was not doing enough to suppress my immune system. Now I'm on a new chemo which also has a ton of side effects, but I, and you have probably lost focus for now.
I bet you're still all teary from the commercial up there. It's a sad commercial.
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