Friday, June 22, 2012

We're Moving!!

We're moving!! Not me, but this blog. Pretty With Pelvic Pain will soon be moving from Blogger to the Wordpress.org format. I am doing this move because I really hope to improve this blog as well as expand on it. 

The move to Wordpress will allow for a more professional look, easier access to IC and Vulvodynia videos and articles that I create for places beyond this blog, sub sections where I will write blog posts about other topics including anxiety, depression and more. 

I am really excited for this move and redesign, but it may take a while to be totally complete. I want to make a new post soon because I am jonesing to write one, so I may write from the new platform and then put a link to it here even if the new site is not completely finished. The new location will be more of a website and blog combo. It will still have actual blog posts but then there will also be other pages available. All the posts from the original blog have already been transferred to the new platform, but I will also leave this blog up, I will not delete it, this way you can access older posts either way that you'd like.

I will be posting links here with the official link to the new site and links to new blog posts etc. in the beginning.

Below you can enjoy my first video in my IC video series. You have likely already seen it if you are my Facebook or Twitter friend, but in case you access this blog through another manner you may have missed it so here it is again:


 Videos 2, 3 and 4 can be seen on YouTube and will also be posted on the new site.

Once the new site/blog is decent looking, I will also create a Facebook fan page for it, making it easier for readers and pelvic pain sufferers to connect. There was some confusion earlier in the week. Someone started a FB fan page using my logo and the name of this blog. THAT WAS NOT ME and my branding has been taken down since. This blog does not currently have a Fan page and when it does I will be sure to blog about it.

Thanks for showing interest in my redesign and expansion. I wish you all a happy and pain free (or low pain if you can't be pain free) weekend.


XOXO

Friday, June 8, 2012

We May Look Like You, But...

One of the main struggles of the IC gal is the "I don't look sick" factor. There are many illnesses and conditions out there considered invisible disabilities. Some are more recognized than others and sadly, IC remains one of the least recognized even though around 3 million American women suffer from it.

Us ICers often feel in a league of our own because we hurt more days than not and people tend to think we are exaggerating. It's not like we walk down the street shouting "I'm in pain" but when we need to tell someone we are in pain such as a new doctor, a friend who asks why we seem down, an employer who won't let us go home early or an extended family member who approaches us at a party we are sometimes not met with an understanding response. 

Would you be able to tell which friend has IC?
I have been reading some data lately compiled by the ICA, well-known doctors and other legitimate organizations. This data really backs up our pain level and validates how harshly IC can impact our lives. I am not going to make a works cited list or anything because this is my casual blog and not your college term paper, but rest assured these things you are about to read are all  true and not just some junk I pulled out of my ass. 

If you have IC, please consider showing this list to your family and friends. If you don't have IC, but know someone who does, stop judging them by their appearance and take this list into consideration instead. 


Characteristics of Many IC Patients

I have IC, I may look just like you, but... I'm depressed. I'm depressed because the pain I feel is so intense it impacts the activities I can and can't do.


I have IC, I may look just like you, but... I have just as low a qualify of life as a dialysis patient.  


I have IC, I may look just like you, but... I'm tired. I'm just as tired as someone who has MS or Lupus but for some reason you probably take people with those illnesses more seriously.

I have IC, I may look just like you, but... I can't stop peeing. I need to pee one to three times per hour if not more. If I don't go when I need to, I am in intense pain.

I have IC, I may look just like you, but... My joints hurts. My joints can feel just as achy as someone with rheumatoid arthritis. The only difference is people have actually heard of RA.

I have IC, I may look just like you, but...  I have trouble sitting, yes, sitting. When I sit too long in any typical chair my bladder, vagina and perineum hurt a lot. It feels like someone is stabbing me with a razor blade or a knife. I am much more comfortable sitting on a couch or better yet laying down.


I have IC, I may look just like you, but... I get brain fog and confusion because I am on so many medications. I can't stop taking these medications or I would be in even more pain.


I have IC, I may look just like you, but... I struggle with my weight. When I have too much pelvic pain, it can be hard to work out. The medicines I take may also cause me to lose weight or gain weight at an abnormal pace.


I have IC, I may look just like you, but... I had to give up wearing jeans most of the time because the material hurts my pelvis and bladder.


I have IC, I may look just like you, but... I don't sleep well at night. I am either getting up to pee or am uncomfortable because of the pain.

I have IC, I may look just like you, but...  I spend too much time and money on doctor visits. 

I have IC, I may look just like you, but... I have had to change jobs, cut back my hours or stop working completely because my crippling symptoms come and go as they please, they don't fit into the standard 9 to 5 mold.

I have IC, I may look just like you, but... My social life is nothing like it used to be. I have to cancel on plans when I am not feeling well. Some people have stopped inviting me places period.

These are just some of the many challenges IC patients may face. This illness is debilitating and devastating. Will you start to notice? Will start to care? Will you start to show more compassion? Or will you just keep ignoring it because your friend with IC looks just like you?    








 

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