Blogging for Endometriosis Awareness: Week 1 -Physical Impact

Physically, endometriosis has really taken a toll on me. As a progressive disease, I have really felt what it has done to my body over the past few months. In August 2012 my symptoms hit an all-time peak. I was nauseous and bloated. I began to experience constant back, pelvic and leg pain. I would even vomit from the pain. I have to admit that some days I feel like I am going crazy, my pain level is that significant.

Since November 2012, I have not been able to work. I work at a desk, and struggled to do that. I should also say that I was working 12 hour shifts, at night. I was in constant pain and was unable to sleep during the day due to the extreme level of pain. I have had two surgeries since November (a laparoscopy and a cystoscopy with hydro-distension). 

I am unable to do “normal” things that a 26 year old woman does. I cannot even clean my house without needing a nap. I lay in bed or on my couch most of the day. I should also say that I am by no means lazy. Before my pain hit a peak, I was working out 5-7 days per week. In junior high and high school, I played softball, tennis, and was a cheerleader. I also used to ride horses. My pain level has stopped me from being active like I once was. Now, I am only able to do simple stretch exercises at home.

I went to Las Vegas last weekend, and really pushed myself past my limit. I wanted to have fun, because I hardly get to do things like that anymore. If you have been to Vegas, you know that a lot of walking must be done in order to shop and site-see. Eventually, it just became too much.

 

Endometriosis affects many women’s quality of life. It also leads to other health issues. For example, I have two other health conditions, interstitial cystitis and pelvic floor dysfunction. I will have another laparoscopy in 2013 to remove endometriosis lesions that were missed during my initial laparoscopy along with that has returned. Even though I had a surgery in November, I still have not been relieved of the pain. Almost daily, I experience pain in my legs, back and pelvic area. I also have extremely horrible nerve pain. Endometriosis is still in my body, and when I think of what is going on inside my body, it sickens me. Endometriosis is real, women who live with endometriosis are not crazy or hypochondriacs. 

Every day is a struggle.

 

Getting Back to a "Normal Life"

Well, it is official. My doctors have sent my employer my work release. The HR department has approved me for 8 hour shifts for the first two weeks back.

Photo Credit: SlavesInc Blog

 I work nights, so I tried to stay up as late as possible, but fell asleep around 11pm. Clearly, I am not doing well. I plan on taking a long nap today, so that I can stay up till 3:00 am.

So, I will be getting back to "normal" things people do.

I will have to shower, put make-up on, and fix my hair on schedule now. I will have to commute to work. I will return to 8-12 hour work days. I will start earning a living again.

The thought terrifies me.

xo Heather

Endo Happy: Endometriosis Awareness

Here is the newest post by Katie from Endo Happy:

I hope by now you have all seen that my story was featured in Cosmopolitan on Friday! I didn't find out until that day they were going to do it so was a very exciting day for me and a great start to awareness month.

I have been thinking a lot about awareness, what it means to me and what are the best ways to draw peoples attention to Endometriosis and how can we help to prevent other girls from suffering to the extent we have done. What I am going to do is a life map, think back to everybody that has been in my life since my heavy periods have started and I am going to contact them and bring Endometriosis to their attention.

I started this on Friday by sending the endometriosis.co.uk publication 'endometriosis in the workplace' to my manager and assistant manager, I am going to post/email that publication to every HR department of each employer I have had in my adult life. I'm going to contact the schools/colleges I went to, the gym I go to and so on, basically anybody that is part of or has been part of my life. And most importantly I am going to send an open letter to the Doctors surgery that I used to attend, where my misdiagnosis occurred over several years to advise them of the situation and send them a poster for them to display. The Doctor I used to see has long since retired but I hope the other Doctors will read and take notice.

I will be posting throughout March with the updates #endolifemap please look out for them and I hope you will be inspired to take a similar approach in your efforts for awareness!

                                                     

Special thanks to my guest blogger, and dear friend for sharing this with us! Make sure that you follow Katie's updates! 

xo Heather 

Yellow Day - March 1, 2013

HAPPY ENDO AWARENESS MONTH!!!!

Here I am, in yellow. Sorry for the pic quality!

To kick off Endometriosis Awareness month, I asked those who wore yellow to send me their pictures.  Here are the sweethearts who took the time to support us:

Hello Endo Fundraiser

Please visit My Fundraising Page to donate to my Endometriosis and Pelvic Pain non-profit, "Women's Pelvic Pain Foundation."

I am in the beginning stages of getting the foundation established and need your help.

I believe that all of the awareness and research that other organizations are doing is great, but I am seeking a different approach.

My goal is to help women suffering from pelvic disorders (Endometriosis, IC, etc) financially. Whether or not you have insurance, there are other expenses related to our medical care.

We should not have to worry about missing work, paying rent or mortgage, etc while recovering from surgeries or during our "bad days." 

We also should not ignore the women without insurance who are suffering because they do not have the thousands of dollars needed for medication and surgeries.

Help me to help you.

My goal is $7,500 and would love to meet that goal!

Please donate here. Your donations WILL go to a women suffering.

I will make every attempt to blog about donations that have went to help others (with the respect of an individual's privacy, of course).

xo Heather

 

Non-Profit

As some of you may know, I am in the beginning stages of starting a non-profit organization. 

The non-profit will be for women who are currently suffering from endometriosis.

I am in the process of getting the paper work completed, consulting with possible non-profit lawyers, and getting a website established for donations.

I can tell you the the non-profit will focus on the lives of women who are currently suffering from the disease. As far as any other specifics, I am going to keep that private for the moment. 

I am needing your help in brainstorming names for the non-profit. I would appreciate any ideas you may have!

Let me know!

P.S. Don't forget that tomorrow is the last day for the EndoFemm drawing! Make sure you sign up!

xo Heather

Last Wish for Char

CHARLOTTE & CHASITY

Chasity, one of our Endo Sisters needs your help!

 

Her sister, Charlotte Eitel is currently on Hospice and battling cancer. Their family is seeking financial help regarding funeral expenses. Charlotte is a single mother and is on a fixed income, so your support is greatly needed and appreciated!

Please help to make Charlotte's final wishes possible. Click here to learn more about Charlotte and to donate. 

 

Also, you can follow Chasity on Twitter.

Thank you ahead of time for your donation!

xo Heather