Who are you?
I added a new poll, and I’m interested in seeing what kind of response I get from it. I am curious as to who reads this blog.
I’ve had a really bad case of writer’s block for a while now. I think it would help if I had a better sense of who was reading.
It would only allow me to vote for two options, but, I have lupus, my mom has lupus, my great-aunt has lupus, and my friend has lupus.
Sorry Kathleen, the poll software limited me to two responses, but thanks for letting me know. Did you meet your friend that has lupus because she has lupus, or did you know her before that?
I myself has Lupus. I found out about 2 years ago. I am 29 yrs old and have 3 young daughters.Your blog rocks,I might add..I am always looking for people who has this terrible disease,to compare my symptoms and story with..I have no one in my family who has it and I do not know any of my friends that has it either..I did however join a support group for Lupus at my local hospital,the support helps so much in learning how to cope with this..I am so sorry your wife has been struck by Lupus,it is great that you are so dedicated to trying to help her through..I read one of your blogs were you said something “we are going to have a vacation where we sleep during the day and go out at night”. My husband says similar things like this about baseball games. I have never been to a Major League baseball game and he wants so badly to take me,but with the Lupus makes it impossible to go to a day game,and finding night game tickets on short notice( since you never know when a lupus flare up is going to keep me down) is impossible!! I find comfort in knowing my husband and I are not alone with the way we feel..So KEEP blogging!!
@Jenny: Thanks for the support. What a great idea to put together a Lupus friendly event that would take place in the evening. How cool to have a beach night!
I hope you make it to a Major League game soon. I wrote about a neat little card game called Harry’s Grand Slam Baseball on my other blog where I talk about games and how they help me keep from getting down. Check out that post here.
Hi,
I could have Lupus but I don’t allow it. Just a few observations I have made. Have you noticed that modern medicine says they need your money to find a cure and yet they have not found a cure in 60 years, 0. And autoimmune diseases like Lupus are interesting there are approximately 80 to 100 with another 40 waiting for a name and if you get one you will get another and so on. And medical science cannot explain why we have this autoimmune epidemic. You can trigger one of them just by having an auto accident, taking aspirin or medication or by starting a new exercise routine, even too much stress says latest research. Naturopathic medicine says, “Look for the root, it is in the basics beginning with what is on your fork, what toxins are in your body, what exercise do you do, what stress is in your life, what is your spiritual base”. Scientific arrogance has led us down the wrong path we better stop and take a close look at what is happening. This month 150 new chemicals will be added to the 85,000 which are part of the autoimmune problem. They will be added too industry with no oversight control at all. Autoimmune disease is the worst kind of contradiction; for an Lupus you are attacking your body with your immune system, a world upside down. God bless you in your search.
Sincerely
Paul
I considered moving Mr. Blake’s comment into my spam file, but then decided to leave it up. I deleted my long and tedious reply where I revealed his faulty logic and why I think naturopathic “medicine” is not a viable alternative to qualified medical care.
I usually delete anything I consider an advertisement, but I think I’ll just leave this one. Maybe I’m wrong to do so, I’ll think about it for a while. Maybe I’ll write a post about the whole, “The only reason you are sick is because you are living wrong spiritually” idiocy.
Yes, it’s obvious how I feel, but I would like this blog to be more than just my opinion. I would like it to be a place where people feel comfortable sharing their thoughts and feelings.
I’m very conflicted on this.
Kind of off topic, but thought you might be interested in making it a poll question.
I’m interested in seeing if other readers might experience problems with traveling/changing their timezones. I’m looking forward to a vacation with my hubby and am wondering if I should expect any issues with having my internal clock messed with
As I missed the poll:
My mum got diagnosed just under two years ago. I keep meaning to get tested too as I have a few of the symptoms (I keep losing track of which ones count as key symptoms and which are hints etc) but I guess I’m afraid of what the result will be – hypochondriac or genetic sufferer.
On a side note, your support system in the US seems much better. You really have to push to see a rheumatoligist in the UK and they have *really* bad communication with the GPs, who are of course the immediate point of contact after a flare up.
J – my mum’s been going to China a lot the last couple of years, I’ll ask her. One hour changes don’t seem to affect her much.
My great-grandfather died of lupus when he was 88, and I didn’t know much about it. I never get a chance to meet him, but now I understand a little more about the disease. I’ve set up a site in memory of him, and hope that it will provide valuable information for other people that may also have lupus.