Archive for the ‘Lupus’ category

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Initiate Auto-Destruct Sequence. Authorization: Lupus, 4 7 Alpha Tango

February 12th, 2010

There are things that no matter how many times I experience them, they still fascinate and amaze me. My body breaking down when I am getting sick in rapid fashion is one of those. I have been living with Lupus for over a decade now. I am constantly sore and fatigued because aside from my primary disorders of Lupus and Antiphospholipid Syndrome I have many secondary disorders, Chronic Fatigue Syndrome and Fibromyalgia being two of them. On a good day my pain levels are about a 4. On a normal day they hang between a 6-8. This is with being on 8 different medications to treat my various faces of Lupus. On a bad day is when I finally have to visit my doctor or emergency for prescription pain killers because I can no longer cope with the day to day pain.  My doctors have been wanting to put me on Prednisone and daily prescription pain killers and antibiotics for years now. But that is the last line of defense and I am not willing to roll over, give in and stop fighting.

It is very hard to explain all of this to people. Especially when I share this very painful part of my life and instead of just listening, I am greeted with pity. My days are difficult. Simple tasks such as walking to the bathroom take me a long time as I need to talk myself into taking the steps necessary to walk. Every step is like knives are being dug into my joints. But I get up and do it. I move through my days moment to moment if that is what it takes to make it through the pain. And that is on a not so bad day. There are many other inconveniences that I live with thanks to Lupus and normally I do not think about them as they are always there and I just do what it takes. And then events like tonight happen and I become fascinated with just how Lupus works and I wish I had some way of examining my cells as this process takes place. It would be very interesting to be able to sit in and hear the conversations between the different systems and cells in my body as the battles that rage inside my body advance from little and quiet skirmishes to full out brutal and bloody war.

I have spend most of the last 6 weeks sick (and by sick I mean it becomes more difficult to do the moment to moment and I am at a point where I have to make a complaint about it). It started off with a really bad chest infection right at Christmas that started off feeling like a simple cold to become close to the point of hospitalization overnight. I was put on antibiotics and was as fine as you can be with Lupus for about a week. Then shortly after my birthday, I got another cold. This one hung in there for a very long time. I kept tweeting that I needed to get better by Feb 3 because I was going to GottaCon and I knew that would completely breakdown my defensive system. One small phaser blast and my shields would be down. I did not get better, however I learned from my experience at PAX when I ended up contracting H1N1 what extra precautions to take on top of the already extra precautions I took. (Yes going to GottaCon may not have been the best choice, but I need to actually live life once in awhile and there are acceptable risks you take especially when you are at war. Sometimes you need to sacrifice a few troops in order to win the larger battle.) I made sure to spend as much time as possible off of my feet. I made sure to drink more fluids. I made sure to always have something in my hands whenever possible so that I had an excuse to not shake hands as I was there on a public appearance as a special guest but didn’t want to appear rude when introducing myself or having to go into some explanation as to why I wouldn’t shake their hand. I washed my hands even more frequently than I normally would. And even so I didn’t get as much sleep as I should, I did get a lot more than I did at PAX.

I left GottaCon feeling tired and exhausted. However, unlike PAX, it wasn’t an unusual level of tired and exhausted, it was within my range of what I would consider normal for me. Then tonight it happened. Within less than an hour, my cold progressed from a mild cough now and then and a somewhat irritated throat to being barely able to swallow and feeling as if my throat is being ripped up my neck and out my nose every time I sneeze. My glands went from normal to the size of walnuts in what felt like a nanosecond, my sinuses are pounding and my head is all fuzzy. It is as if the auto-destruct sequence was initiated and somebody forgot to abort it.  As awful as this may sound I cannot help but to be enthralled by the whole process. All I can think right now is that I wish I had Dr. Crusher’s sickbay so that I can place myself under the scanners and just watch the chaos that is currently going on inside of my body. Wouldn’t it be awesome if we had even a fraction of this technology? Technology that does not require giving blood or more invasive procedures. Technology that can help us scan and map in real time, to listen in on the communication process between all the different factions currently at war. Imagine all that we could learn about disease especially a disease that fights as covertly and in such a guerrilla manner as Lupus. Imagine the possibilities. I just can’t help but to think of the mechanics and the wonder of it all.

Fascinating.

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Posted in Lupus, chronic illness, personal

As The Curtain Draws To A Close

December 18th, 2009

I have said before sometimes thank you is not enough. But I am going to try my best to express the flood of thoughts that is going through me at the moment as I prepare for my final Geeky Pleasures radio show tonight.

I was going to do on air thank you however I have been prone to spontaneous eye leakage all day today and I am afraid it will happen tonight while people not only listen, but worse, they watch.

Thank you to everyone who has supported me for the past year and half while I did my thing at Party 934 | 102.5 FM Hudson Valley NY.

Thank you to everyone who not only allowed me to entertain myself but allowed me to entertain you in the process.

Thank you to everyone who has embraced (as one listener put it) my unique brand of geekiness.

Thank you to everyone who laughed at me while I laughed at myself.

Thank you to everyone who supported and allowed me to feel normal at least one day of the week, as normal as a geek/nerd can feel. This is a big one. My radio shows allowed me to have a few hours a week where I could pretend I was doing something productive and meaningful, and I was not living with Lupus (except for the one time I almost fainted during my show). From the bottom of my heart, you will have no idea how much this means to me.

Thank you to all the people behind the scenes who have laughed with me and cried with me while I went through the roller coaster that is my life. Thank you especially to those who just listened. Those that didn’t try to fix it. Those that didn’t try to compare battle wounds. But those who really just listened and allowed me to feel what I was feeling and let it pass when I was ready to let it pass and not when they wanted it to pass. If it were not for your support, I don’t think I would have been able to maintain my normal level of insanity. It would have spiraled into something not as fun.

I hope that sometime (sooner rather than later) I can find a way to make Geeky Pleasures live again in some audio format where we can all come together and geek out in real time with the world. Being able to geek out with people from all over the world in one place and allow the world to listen in is a truly unique and special thing. You are what made it happen. Without your input, without your contributions, without your own unique brand of geekiness it just would not have been as awesome as it was.

Thank you.

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Posted in Lupus, Party934, chronic illness, entertainment, geek, internet, media, personal, radio

Because Sometimes Thank You Is Not Enough

November 14th, 2009

I have had a lot to deal with the past few weeks, both professionally and personally. It has been a very emotional period for me to say the least. My blog postings have been very reflective of that. Some people understand why I sometimes get overly personal and some may not. If if you are the one of the ones that may not, I think the best way I can explain this is people get scared. And those of us who live with Lupus live with a lot of fear. I want to allow people to know that it is okay and they are not alone, even at times when they feel they are alone, as I do often. Most of my feelings of being alone are self-inflicted for reasons I have explained before. I think the emotional battles one goes through living with Lupus are much harder than the physical ones. At least this has been my experience living with this disease.

And on top of those day to day battles (which get worse this time of year) I may lose the one of the major things (aside from my children) that keep me battling and going. And that is my Geeky Pleasures website and radio show. I have been so tempted the last few weeks to just write the “Goodbye it was a pleasure post, maybe we will see each other again sometime in the future” and have my site, blog, Twitter, Facebook go silent now instead of at the end of the month when it is time for the bills to get paid and there is no paying them. Then one of my friends who are on the inside of all of this will kick me in the ass and I decide to prolong it. I lose faith in myself and I begin to think none of it really matters to anyone. And even so one of the primary motivations for me doing what I do is so that I can at least pretend the elephant is not in the room and because I love it with all I am, I want to leave a legacy that was left to me by my grandma and dance teacher. As I have written before, they had chronic illness as well. Lupus took my dance teacher a couple weeks after my road to diagnosis had begun. And if it wasn’t for her, I would have never been diagnosed. My grandma was on oxygen most of my life. Both of these women did amazing things with their lives and to help others despite their challenges and obstacles. They are my heroes and I have lived my life hoping that I could pass on their message to others and give them hope, even if it is just one person. If I manage to do this, then my life meant something. Living with Lupus meant something.

And then shit happens like it has been happening over the past few weeks. Yes there have been many amazing things going on as well that cause me to stop and say, “Wow, I cannot believe this is my life!” But sometimes the shit gets so heavy it is hard to see and appreciate the good. I feel as if I have failed on what it is I hoped to accomplish. That I need to accomplish in order to keep some form of sanity and dignity. Yes my friends tell me they appreciate me and it is so appreciated and cool but that is what friends do. They love and support each other through the dark times so that they can celebrate the good together.

And then something small happens that brings me to tear. I am completely overwhelmed at the moment and cannot stop crying. I was checking my stats for my Geeky Pleasures website and I found this post that has linked to my site. Just when I am about to give up on humanity, somebody will do something small that brings me to tears and everything is fresh again. My purpose has been served and if everything ends at the end of the month, at least I know all of this was not in vain.

I want to say thank you, but sometimes thank you is not enough.

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Posted in Lupus, chronic illness, personal

I Have Been Binged And Other News

October 26th, 2009

So last time we spoke, I did not know if I would be here at the end of the month. Thanks to a very generous offer from a friend, I have been given a one month reprieve. Hopefully in the next week or so I hear back from those I am currently talking sponsorship with.

The other night, someone went crazy on my Geeky Pleasures website. Like seriously crazy. I was checking my host stats and I noticed a new visitor. That part is not weird as I get a lot of new visitors per day. What stood out about this visitor is the amount of pages they had visited. And then I watched as in the next hour they browsed 571 pages of my site. I don’t even think my site has that many pages so they were checking things out more than once.

Now the city of the IP address is Santa Clara. Santa Clara is in the heart of Silicon Valley. Santa Clara is also the HQ of one of the companies I am currently in sponsorship talks with. This has me really nervous because I still have not heard back from them since I submitted all the info they were wanting. I hope the fact they (if it is indeed who I hope it may be) browsed 571 pages and didn’t leave after only a handful of pages means they liked what they saw and I will hear something back very soon. And if it isn’t who I hope it is well then maybe something will come out of it. Who knows. Seriously why would anyone browse 571 pages in one sitting?

My book has been published! Holy sheep shit Batman! I got a really nice comment on Wil Wheaton’s blog today (well now technically yesterday) from a fellow reader about my Geeky Pleasures website and how much they like it and have already stuck in their RSS reader, my writing style, telling me I am very talented and they can’t wait to be paid so they can buy my book and telling other people to buy my book and check out my site. It seriously brought tears to my eyes. This book has been a very emotional experience for me. When it became available for purchase on Friday, I couldn’t stop shaking or get rid of this feeling of nausea. It is very personal to me and for a cause that is near and dear to my heart.

Even so I do things because I like them and I don’t care what other people think, in this case I honestly can say I do care because it is of such a personal nature. I just hope people enjoy it and don’t feel they wasted their money. The other things I put out it doesn’t bother me if they don’t like it because it has taken no investment on their parts to consume it. They can either come on the ride with me or not. This is different. This is not just about me, it is about my children and raising money for Lupus research. I hope its good.

The fact my book is now published has me thinking a lot about my relationship with my boys lately. I was overhearing Kid2 once again going on and on about how cool I am and you could hear the pride in his voice. The same goes for Kid1. I think it is awesome they think I am cool and speak about me with pride. It also makes me teary. I feel so blessed I have such a close relationship with my boys. I did not have that with my mother.

She was not a good parent by any stretch of the imagination and it does not help that she has severe mental illness. People who do not understand what I went through growing up like to say to me “she is ill, you have to realize it is the disease talking and not her.” This really bothers me. I have my degree in Psychology so I do understand it is part of the disease she has. But she chooses to not get treatment and stay crazy and with her illness, it one of the few where the person suffering has an active part in recovery. She has decided to not get treatment.  She has decided to not get better. She made the choice to not have me in her life. For the longest time I hoped and I prayed I could have a real mom. That when I spoke of my mom I could be proud of her and not be ashamed. I gave up on that fantasy a long time ago. So yeah, it really means so much to me that my boys not just love me, but like me.

Tonight was another moment that I decided needs to go into the remember for always always category. It was a brief moment. I asked kid2 if he wanted to watch a movie with me and cuddle. He said sure. So we watched a movie I hate and he loves and cuddled for two hours. After it was done I said to him, “Thank you for watching a movie with me and cuddling. I know how difficult it must have been for you.” To which he replied, “Yeah cause it’s like child abuse.” We both smiled and he resumed watching his shows and I resumed trying to assimilate all that is going on in my life at the moment into some sort of logical thought process.

I wish I could understand Bing. Ever since someone decided to use my Star Trek MMO review as a lure to infect people’s computers with a Trojan, I have been doing vanity searches to make sure that any mentions of articles I have written actually do indeed link to my site. I search both my name and Geeky Pleasures. Some months ago, I made a geekypleasures.com domain at a friend’s suggestion. I forward that domain to my Geeky Pleasures site and it is the name I give out on air when telling people about my site. I have never submitted this domain to any search engines as it is a redirect.  Well Bing has decided to list it in search results for Geeky Pleasures. Bing has also done one better. They have given my site and me a new title.

According to Bing geekypleasures.com is Geeky Pleasures with Jules the Awesome. No where in my meta tags, site title, site name or site description meta tags, no where on my site does it say anything about Jules the Awesome. Seriously, how does Bing come up with these things? I had to giggle at it. Then I decided to do a search on Yahoo (something I never do but figured what the hell. Does anyone still use Yahoo?) and they have followed suit by calling me Jules the Awesome. However, at least they have a site description underneath that lets people know its a redirect to juliasherred.com.

So should I sign all my posts now “from Jules the Awesome?”

I am not serious, I just think it is funny and it was kind of an ego booster when I needed it.

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Posted in Lupus, children, family, internet, personal

If Jenny McCarthy et al Can Do It, Why Can’t We?

October 13th, 2009

I have been obsessed with antivax nonsense yet again and with good reason. I have been ranting and raving all over the place over the lunacy. Last night, I made another public rant on Phil Plait’s blog “Beck and Limbaugh agree with far left, Satan shivers.”  If you are too lazy to click the link and read through the hundreds of comments to find mine, here it is:

“And there is no evidence either that Satan shivered. Why on earth must people get so tied up in such a small point and completely overlook Phil’s point?

To whoever this reply applies to as I am too lazy to find the actual comment: Why is it that because Phil puts himself out there and expresses his scientifically based decision on vaccines people are now going to fact check everything he says? You know its not like Phil is deciding to re-write the laws of gravity here. He just wants people to get the real facts, suck it up, get vaccinated and save people’s lives. WOW Phil is a monster! And I do not want to hear that is what McCarthy et al are doing, but it is not. They don’t care if people die as long as it serves “the cause”. They consider the deaths causalities of war, plain and simple.

How about we all hold hand and sing kumbaya and nitpick the little points while people get ill, infirmed and/or die. Then after we have done this we can look into the eyes of the family members who have to deal with the aftermath and explain to them why we were to busy singing songs and yelling at each other to get a bloody needle.

Look into the eyes of Dana McCaffery and explain to her why she got whooping cough. OH WAIT! You can’t because she is dead. Explain it to the child then who had a heart transplant as a baby why his heart is being rejected because it was just a simple flu that does not kill like the regular flu does. Look into the eyes of the children you may orphan because their parents are immuno-compromised and explain to them why you are risking leaving them parentless.

If you have the nerve to look into these people’s faces and say “Sorry we can’t get our needle because (insert poor excuse here unless it is a valid medical reason)” as they lay there really really sick… well then you don’t want to know what I think about that.

I ranted about this last night on my personal blog. I ranted about it today when I was given a leaflet saying H1N1 is a man made vaccine and conspiracy to kill people and turn them into zombies type BS and for BigPharma to make millions and I am ranting about it again.

Yes I am being a bit of an alarmist here but the above is many people’s reality. They have to worry about illness in ways many people do not even imagine. But I think it is time to stop being nice about it and shake people into reality. If McCarthy et al want to scare people into not vaccinating then why can’t people use the same shock and scare tactics but with science to back them up? And this flu (as someone has already pointed out) is not just killing those at higher risk, but normally healthy people as well.”

After this rant, I was up all night subjecting myself to stupid video after stupid video with McCarthy et al on a various of different “news” programs and talk shows spewing the same dangerous garbage and shifting the goal post. I could not sleep because I was so upset over this and the comments of people who honestly believe this garbage caused me to shake.

You know, McCarthy is one smart cookie and business woman despite the fact she comes off as a raving lunatic for those of us who are grounded in reality. You want to know why she is smart? Because she has put a face to her crazy, her poor poor autistic son Evan. She has made millions off of her poor poor autistic son Evan and has made others millions. She preys on people’s emotions and fears by using words such as “Iran and Iraq” to describe certain things. She states things such as “parent’s anecdotal evidence is real science” to appeal to the parents who are grief stricken over their child’s disorder. She names names and puts a face to her cause. She is smart despite being so wrong and misguided.

One of the biggest criticism of science is that it deals only in stats and numbers. It is cold and unfeeling. I am well aware of this myself as I decided to leave out stats and numbers when I wrote my own blog trying to put a face to Lupus and raise awareness. For many people stats and numbers are boring and they just don’t care. However, if you humanize the equation, people take notice. It is a basic psychological thing. It is why you see in movie after movie and tv show after tv show that when someone is kidnapped, the police/FBI/etc. tell the person making the media plea for the safe return of the victim to say their name over and over again, to turn the nameless and faceless victim into a person.

There are many people in the science and skeptic community trying to bring awareness to this situation and the damage it is doing. Among them are Phil Plait(PhD), Joe Albietz(MD), Steve Novella(MD), Steve Lundquist / Todd W / IVAN3MAN, studies such as the this that have studied the impact of the antivax movement (A Broken Trust: Lessons from the Vaccine-Autism War)

This is an excellent start but I am really starting to believe it is not enough and never be enough because it is not appealing to people’s emotions. One can argue that science shouldn’t appeal to person’s emotions since science is supposed to be emotion free. However, this subject is not emotion free. Now even so I do become of a bit of an extremist and an alarmist when it comes to this issue because it could very well kill me and leave my children parentless and I feel we could learn from the tactics of McCarthy does not mean we should become her. Using terror to fight terror is never a good idea. And even so anecdotes ARE NOT EVIDENCE despite what Jenny McCarthy wants to say, I think it is time we put real faces to this issue. It has already begun with Dana McCaffery’s parents becoming vocal on the tragedy that struck their family. I think it is not enough.

Like it or not, people listen to anecdote. Like it or not people will listen to something because a friend of a friend of a friend said it and swears by it so it must be true. So I think us science people need to start putting faces and names to how the antivax movement is affecting our families and us. Let us humanize the numbers found above in the study and the McCarthy body count. Let us who are science realists, who have children with autism etc speak out without spouting numbers but with real faces. The numbers are there but they are cold. Some of my friends in the science community may not agree or support this idea and that is their choice. What I am proposing is this, blog about your story. But on top of blogging your own story or the story of someone close to you who is affected by this, I am willing to create a page dedicated to these stories so they can all be found in one location.

I have invited the crazies many times to come here and say their garbage to my face. Now I do not know if it is because they can actually kill me and they can’t say it to my face why they continue to believe what they believe or what is the case, but they remain silent. And I know they read this blog. It is not like I do not get a lot of hits. Now I am inviting the other side. I hope you accept this invitation and speak up. Please pass the word and send me feedback and I will create the page ASAP and we can start building the provaccine community and put another face to this issue.

And if you are part of the science community and think this is a bad idea, please let me know why you think it a bad idea as well. We are not always going to all agree on how best to get a message out and if we make that transparent perhaps it will help get the message out that it is all anecdote and do the real research yourself and talk to your doctor.  Despite the fact we want to think our mommy/daddy instincts outweigh a doctor’s education, they do not. We get insane and irrational when our children are sick. We grasp at straws and will cling to anything told to use that brings us any ray of hope. The last thing we want to hear is a doctor we feel is not listening to us. Well they are listening but it is their job to protect our children and keep them healthy, even at times from us parents.

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Posted in Lupus, antiscience, antivaxx, children, chronic illness, family, personal, science, vaccination, vaccine, vaccines

Ranting Again

October 11th, 2009

I really wish I had something truly wonderful to write about lately, but I don’t. This time of the year is never a good time for me. And this year, it just keeps getting worse. It is coming up on the cold and flu season. And thanks to all the wonderful crazies out there and people reacting out of fear and ignorance instead of science and logic, I get to spend the winter in reverse quarantine. YAY! I guess one good thing has come out of all the crazy stupid. I have been inspired to write a second book entitled “The Stupidity of Humanity.” This book will take a long time to write and it will be a rant and I know it will anger people on both sides of the fence since I am going to take a middle ground on a lot of issues and not so middle ground on a lot of others.

I feel sorry for my followers on Twitter at times because I am not sure if they are aware of why I rant so loudly against certain thing, the Antivax movement being one of my loudest rants. Here is an example of my latest rant:

Everytime something like this happens, I am filled with such rage! A DC laywers (Jim Turner) is suing the FDA to prevent approval of the H1N1 vaccines based on falsified information. FFS! When is the insanity going to end?!? Info via @achura RAGE! JULES SMASH!

Maybe I should write a second book entitled “The Stupidity of Humanity” which would be a complete rant against idiots.

JULES SMASH! “He’s suing 2 stop Swine Flu vaccine on behalf of a client who sells snake oil fake medicine http://j.mp/1m7F35 (via @achura )

Just because you don’t get sick, doesn’t mean you do not carry disease that can kill babies, elderly, the immuno-compromised, transplant patients, cancer patients, those who on the outside look healthy but are not. Just get jabbed already.

And if you think the side effects of the shot are bad imagine how sick you would be if you actually got the disease you are being protected from

Look into the eyes of a child who’s parent you helped kill or the eyes of a dying child or elderly person & explain to them your choice.

I am one of those parents that you will get to explain to my children why something as the “simple flu” took away their mother. Hell even if you are a normally healthy person, these diseases that vaccines help prevent can make you seriously ill. I am so tired of the look I get from my children when I am sick. The look of fear and panic that this illness is the one that is going to take away their mom. They have spent their lives with a mom who has been in and out of hospital more times that one can count. I am a single mother who relies on public transportation to feed her children. I do not have physical support. So of course I get really angry and upset when people just don’t care to understand. I get really angry when the normally sane Canadian health authorities stop the normal fall flu schedule. I break down in tears when my child comes to me and says, “um will you live… and don’t lie to me.” Right now the elephant in the room is HUGE and I cannot ignore it. If I ignore the fact I have Lupus at this moment, it could mean my death.

And it is not only just because of my situation why I rant the way I do against this idiocy, but there are millions of families just like mine. Babies are already dying in countries such as Australia because of all of this nonsense. Australia is not some third world country that does not have the resources to protect the population and babies are dying. Look in the face of of Dana McCaffery’s parents and explain to them why their baby had to die. Explain to them that it is a necessary casualty of war against the BigPharma. Explain to them and the other parents who’s children have died of pertussis because they were too young to be vaccinated and there is no herd immunity.

Explain to the family members of transplant patience, cancer patients, the elderly why their family members are dead because you were either too lazy to get jabbed or you gave into the fear mongering or you used the excuse “I never get sick.” Explain it those who cannot be vaccinated to do allergies why they are sick. Explain it!

Just because you never get sick, does not mean you cannot get others sick. Call it my crazy socialists ways, but it our jobs to protect everyone from these things. What good are we if we are sick, infirmed or dead.

As I said on Phil Plait’s blog last night, we have become lazy and complacent in our instant gratification society. People expect perfect knowledge and heaven forbid there are mistakes made along the way. That is how we learn. That is how we grow. That is how we make advancements and better products. Yes there have been some mistakes made in science and medicine along the way, but we deal with them and move on. Nobody has ever denied that, except for the denialists. As someone pointed out in the comment section, our parents never thought twice about jabbing us. My response to this was perhaps it is because they grew up in a time where they saw first hand the devastating effects of mumps, measles, polio, whooping cough etc. We are lucky enough to be in a part of the world were up until recently, those diseases were under control.

Are you going to have to see a resurgence in these diseases to kick your lazy asses into motion and get a simple needle? I really hope not.

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Posted in Dr. Phil Plait, Lupus, antiscience, antivaxx, children, chronic illness, family, personal, science, vaccination, vaccine, vaccines

Think Before Giving Into Fear

September 28th, 2009

I am so angry right now I can’t think straight. I am also so upset and sad right now I can’t stop crying. I am so disappointed right now in the different Canadian health authorities. I am so disappointed in those who’s jobs it is to protect families like mine. I am so disappointed in a government that is normally so pro vaccine and even has ad campaigns promoting immunization. They have dropped the ball. They are now causing fear and panic over a supposed research paper they even haven’t read yet because the authors claim they cannot release it as they have submitted it to some science journal and have to wait until publication in said journal before the results can be released.

What this report is claiming is that getting the normal flu vaccine is dangerous and it increases your risks of getting the H1N1 virus. Now other countries have done the same studies and their published findings say that there is no increased risk. But what does our government do? It decided to hold off on the flu vaccine despite the fact THEY HAVE SEEN NO PROOF that the flu vaccine increased the risk of getting H1N1. 5 different provinces have now changed their normal fall flu vaccine campaign based on alleged findings. Does this seem logical to you? No it is not! What this will do is make those who are antivax scream louder and say “HA we told you so! Vaccines are dangerous, m’kay?”

Now why does this have me so upset that I cannot stop crying? Because unlike you normal healthy people, this can kill me. This fear and ignorance is a threat to my life. I rely on others to be vaccinated from things as simple as “just the flu” to keep me alive. This means that this Winter I will probably get to enjoy at least 2 months in reverse quarantine because something as simple as the flu can kill me. I have Lupus and there is no such thing as a simple virus to me.

And people wonder why I get so upset when people are so ignorant when it comes to doing their part to keep everyone safe and healthy. I do not want to ever have to hear Kid1 ask me “mom are you going to die… and don’t lie” again. Now if the flu or cold can kill me, what do you think the other things that vaccinations help prevent will do to me?

I am not the only one who has to worry about things as simple as the flu either. There are millions more like me. And a lot of us cannot be vaccinated because it is contraindicated for health reasons. Another example of why this has me in tears at the moment is this. There is a little boy at Kid2’s school that had to have a heart transplant when he was a baby. He is on immuno-suppressants for the rest of his life, like me, so that his heart does not get rejected. He also relies on other people to be responsible when it comes to health.

When I had H1N1, even so Kid2 was fine, the health authority had to go into their school and remove every piece of furniture from Kid2’s room and the other boy’s room and completely disinfect everything. A notice has gone home to all the parents stating that there are two families with chronic health problems where something as simple as the cold poses a serious health risk. If your child is showing any symptoms of illness, please keep them home until they are symptom free for 24 hours. Kid2 had a cold and I of course kept him home as I understand the seriousness of this situation better than anyone else. But do you think other parents are going to do the same? Somehow I doubt it.

I am so angry and upset right now. I cannot believe those who are in charge of keeping the general population healthy, of protecting babies and the elderly, of protecting those of us with compromised immune systems are doing this. Do they not understand how much fear and panic this has the potential to cause? Do they not understand how much louder people who say, “I never got the flu until I got my flu shot” are going to claim that flu shot is bad and people should have listened? Do they just don’t care?

Think before giving into fear. My life and millions of others literally depend on it.

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Posted in Lupus, antiscience, antivaxx, children, chronic illness, family, personal, science, vaccination, vaccine, vaccines

Is It Really Friday?

September 18th, 2009

I have been really lax the past few weeks when it comes to updating my blog. There are many reasons for this: I was away for 2 weeks in August; I am sick; I have been working on my book which I am happy to report is being completed much quicker than I thought it would be. Turns out that I had more of it written that I had thought.

This week has been a very emotional week for me for many reasons. It has been a roller-coaster between many moments of surrealism and “Wow, I can’t believe this is my life” to moments of fear and panic as my book gets closer and closer to being ready to go to the printers.

One of my followers on twitter asked me why I am so terrified of publishing this book as I am on the radio, and tweet and blog personal things. The answer is really simple. The radio is a fleeting moment in time. Tweets and blogs can be erased. This book will be in a permanent print form available for the whole world to see.

And to be honest, this scares me. One on one, I am an open book and will share anything. This book is not one on one and once it goes to the printers and becomes available, I will lose control over how some very personal information about me is distributed. On one hand this excites me as I feel I have a very important message to share. Then when I really think about it, I feel as if I am going to vomit. There is a small part of me that feels I am about to do something pretty awesome. This may be the most important thing I do aside from being a mother. This part needs to be the loudest voice in my head at the moment so that I do not chicken out yet again and not publish.

But it is now beyond the point of no return. The word is out there and all that is left is for me to receive the cover and off it goes. Earlier today I received the sales copy for my book. When I read it, it brought tears to my eyes. I am going to take time right now to once again thank Chris Knight for all of his support as I go through this process. Without him, I do not think I would have found the personal courage to continue through this process. Besides providing emotional support he also proofread my manuscript and wrote the following sale copy.

“Julia Sherred’s From the Mundane to the Insane is the touching tale of one woman’s love of life and hope for the future despite overwhelming challenges. Written as a love letter to her two children in an intimate, conversational tone, Sherred explores the contours of her fascinating life as a dancer, actor, daughter, mother, and Lupus sufferer. It is a tender and humorous celebration of life and family, of creativity and geeky obsessions, and is an inspiration and invitation for each of us to grab life by the horns and truly enjoy every aspect of our wonderful journey without destination.

One dollar of each sale is donated to the scientific search for the treatment and cure for Lupus.”
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Posted in Lupus, children, chronic illness, family, geek, humour, politics

Raging Against Lupus

September 12th, 2009

Dear Lupus,

Lupus I hate you! And not because you are ravaging my body but because you are destroying my children! I am currently in tears because my children are in constant fear that you are going to kill me and I was just served with a quick reminder of this.

My children have still not recovered from the emotional trauma they endured when I had my stroke three years ago. Thanks to you, my non-existing immune system and being on immuno-suppressants, I contracted the dreaded H1N1. A lot of people may think “it’s just the flu” and no big deal, but for me it is. And for my children, it is even a bigger deal. Thank bob, the doctors diagnosed me early enough and I was put on Tamiflu. However, this does not put my children’s fears to rest.

It breaks my heart to no end (after I tried very hard for my oldest to not find out I have H1N1 but due to the lovely thing called the internet, he found out while he was at his dad’s) when I receive the following email from Kid1:

Kid1: um u have the swine flu

Me: yes I do

Kid1: um will u live?…dont lie…

Me: I should live hun. They have me on heavy duty meds to treat it. Try not to worry too much.

I love you

Kid1: no freekin duh im going to worry u have like no immune system and ur my mother..i love u to

Me: Well I should be okay. They were able to get me the medication in time. I just have to rest more than the normal person and have to stay quarantined longer

I should not be having these conversations with my 14 year old! It breaks my heart and I cannot stop crying because of it. Please just go away! I cannot wait for the day when they come closer to approving new medications to shoot you dead. You are ruining my children’s lives. Did I tell you I hate you because of it?

With much loathing,

Jules

(Please read the following post I wrote regardling living with lupus” Putting A Face To Lupus: The Elephant In The Room http://juliasherred.com/blog/2009/07/putting-a-face-to-lupus-the-elephant-in-the-room/ There are other posts regarding lupus as well that you can find in the lupus catagory if you are interested)

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Posted in Lupus, children, chronic illness, family, personal

PAX Recap

September 9th, 2009

Let me try and make this short and sweet since a lot of what I did at PAX will either be covered on my radio show over the next few weeks or my site.

For those of you who are familiar with the one with the orange, you will find the following amusing. I think “they” knew I was coming back into the states. About 30 minutes before hitting the border on the way down, the bus driver announced over the speakers:

“It is very important that you fill out a proper declaration form regardless if you are an American citizen or not. Also it is very important to declare, even if it is just 1, all ORANGES, apples, bananas, peaches, pears, cherries or any other fruits or vegetables you may have on you.”

5 minutes before crossing the border, he warned us once more about the importance of declaring ORANGES, apples, bananas etc etc.

PAX itself was just super crazy and I am still trying to remember all that I did. Thank bob for handy dandy voice recorders to keep track of all my interviews.

Coming back into Canada today was very uneventful. Or so I thought until it was time to board th ferry.  The bus gets front of queue. The bus driver went to fire up the bus’ engine to load us onto the ferry and the bus won’t start.  He tried to start the bus for 5 minutes while all the vehicles are waiting behind us, only to hear very loud buzzing noises.  We are told to get off the bus and wait until the next bus comes for the next ferry in 2 hours.

I almost cried and told the wonderful people at BC Ferries and Greyhound this will not do! I have children that will be home from school in a couple of hours and my childcare left first thing this morning once they left for school.  I nearly had a melt down.  You should have seen their poor faces as I went off.

So they told us to grab our luggage and walk on the ferry and they will contact Greyhound on the island to see what arrangements can be made. I thought to myself, oh you will make arrangements all right if you know what is best for you!

Just in case they didn’t make arrangements, the other passengers and myself discussed splitting cab fare to get to the Greyhound terminal in Nanaimo just to be safe.  But half way through the sailing to the island, we got the wonderful announcement that a shuttle will be waiting for us on the other site to take us to the depot.

On top of all of this, ever since I woke up yesterday I have not been feeling well. I have slept most of the last two days, sore chest, cough, runny nose, fever, swollen glands, kidney pain, diarrhea and a bunch of other symptoms. I had been hoping it was just lupus fatigue and I was not among the hundred of people who attended PAX and contracted the H1N1 virus.

I decided I should phone my doctors office and ask them what I should do. They told me to get my butt down there ASAP. And so I did, hoping they were just being extra cautious. Well this hope turned south. After an examination and a swab being stuck so far in my nose it went down my throat, I have been placed under quarantine for at least 2 weeks and given a prescription for Tamiflu and a diagnosis of probably H1N1. It is not completely confirmed, however due to the fact I have lupus and I am on immuno-suppressants, I am showing all the symptoms and over 100 confirmed cases, they are treated me as if it is since you can only start treatment within the first 48 hours of symptom onset and putting off treatment could be fatal for me.

My worst fear regarding attending PAX came true. I suppose sooner or later traveling with my medical condition would catch up to me. And despite the doctor’s office and health authority urging me not to go again next year and those same huge fears cropping up yet again about contracting something that for most is “nothing but the flu”, but for me is possibly life threatening, I will most likely still attend PAX next year. After all, you only live once and what is the point if you don’t make the best out of it that you can.

PAX and PAX people are awesomesauce and full of win!

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Posted in Lupus, PAX2009, Penny Arcade Expo, personal