Thursday, March 31, 2011

Wait, it's the end of March did that happen? (And why is the ground covered in snow??)

On the last day of Endometriosis Awareness Month, I would like to post a friendoly reminder about the Endometriosis Awareness Petition. If you haven't already, please take a moment to sign it and spread the word to others. I am overjoyed each time I see the signature count rise.We encourage everyone to sign and share. Click the blue box below to be redirected to the petition page.

Endometriosis needs attention from the general public and the medical community. Far too many people have never heard of this common incurable disease. Unfortunately when endo does get media attention, myths and misinformation are often spread.

We have to fight and speak up. Every voice counts.


March may be over tomorrow, but our need for endometriosis awareness does not stop in April. It lasts all year.

Thanks to all the people who took part in endometriosis awareness this month. You are appreciated.

Thank you for your support!


Wednesday, March 30, 2011

I just celebrated my first blogiversary! I can't believe an entire year has passed. Thanks to my awesome friendo Alanna for sharing the blogiversary celebration idea. You can read Alanna's post here, who was inspired by her friend Kass.

I created my blog in the midst of the most difficult period of my life. I felt scared, isolated and overwhelmed as I suffered in terrible pain each day. I overcame my fear of entering the blogosphere and decided to share my story. I reluctantly reached out to the world to discuss the personal topic of my health. I didn't know if anyone would ever read my words. I was unaware of how many other women were blogging about their lives with endometriosis and other chronic illnesses.

I never could have guessed the blessings I would receive from writing my blog. I have met wonderful friendos. We share our triumphs and tribulations as we navigate our complicated journeys with an incurable disease. My friendos help me remain positive, humorous and hopeful. I am inspired by their support and understanding. 

A whole year has come and gone filled with varying emotions, circumstances and issues. I can look back on it now with a new perspective. My posts, like a rear view mirror, reflect a year's worth of my reality: the pain, miracles, despair and elation. My blog helped me realize I want to write a book, a memoir, about my life with endo.

A year later, I haven't run out of topics or ideas. What a lovely surprise. I'm excited to see what the next year will bring!

If only I could figure out how to share cupcakes on my blog...


Monday, March 28, 2011

March has flown by and Endometriosis Awareness Month is almost over. I've been thinking about all of my endo struggles. I never could have made it through my worst times without my loved ones. It's difficult to watch someone you love suffer in constant pain. I recognized their feelings of helplessness and worry. Today I want to share one of the stories of support I received from my family.

When I was very ill, I spent every minute in my home. It was impossible for me to handle everyday tasks. I was nauseous and doubled over in pain, not an ideal scenario for toilet scrubbing or vacuuming. When you're at home all day, you're forced to constantly interact with the filth and clutter. You have to look at it, walk by it, shuffle it around and dig through it. You are constantly reminded you aren't well enough to complete the simplest of tasks. I felt worthless and guilty.

During this time, my aunt gave me the most thoughtful gift. She arranged for Merry Maids to deep clean my entire house. Professionals had never cleaned my home. The idea thrilled me.

Before their arrival, my family sorted our junk and put away the clutter. People joke about cleaning before your cleaning crew arrives, but you really do need to declutter so they can thoroughly clean.

I don't know about merry, but the maids were nice and sweet. I was very merry though! My house had never been so clean. Every surfaced sparkled. They cleaned behind my fridge and furniture. They polished my ceiling fans. The windows and mirrors were spotless and the sinks shined. We could have eaten off the floors.

I rejoiced in the cleanliness of each space.

After the deep cleaning, it was much easier for us to keep our home tidy. My feelings of guilt diminished. I felt at peace and comforted in my home.

I was so grateful for my aunt's sweet gift. My clean house sincerely renewed my body, spirit and mind.

If you're looking for a way to help a sick loved one, helping her achieve a clean house is priceless.


Tuesday, March 22, 2011

I am happy to share the following post for Endometriosis Awareness Month.

My friendo Jeanne for has been amazingly supportive since I started blogging (almost one year ago). She was the first person from cyberspace to leave me a comment on my brand new blog. Ever since then, she has been an incredible friend to me. Her blog, Chronic Healing, is wonderful and informative. She is always looking out for endo patients in many ways. I am so blessed to have her as my friend. I was so honored when she asked me to write a guest post for her blog for Endometriosis Awareness Month. Today, we are cross-posting my guest post here and on her blog. I highly recommend checking out her other posts for March and perusing her archives.

Here is my guest post for Chronic Healing:

Endometriosis Awareness Month: Financial Fallout

I was diagnosed with endometriosis six years ago after years of pain and misery. My life has changed in many ways because of my disease. Lately, the financial consequences of my endo weigh heavily on my mind. The largest financial toll has been over the last year.

I was incapacitated by my endometriosis symptoms in January 2010. My endo pain flared & raged and didn’t relent for months. I was unable to work. When my FMLA time ran out, I was given two medical leave extensions from my employer. I was healing from major surgery when my second extension expired and I was fired from my job. My employer said I “voluntarily abandoned” my position in a shady attempt to prevent my unemployment benefits.

I would have been able to return to work the week after I lost my job. I fought through two appeals with my former employer to receive unemployment.

The majority of our financial burden fell on my husband. Without him, I would not make it financially. My monthly unemployment amount isn’t enough to even pay my mortgage, not to mention my other bills. I am not complaining; I am grateful for the unemployment benefits. Still, the truth is, it’s tough to survive on the amount I receive. When my weekly benefit amount was determined, three months of my FMLA time were factored into the equation. In other words, three big fat zeroes were included in the average. Those zeroes did not help my cause.

I have been well enough to work for months but I haven’t had any luck finding a job. As the blank space widens between the present and my last job, I know my chances of finding work grow slimmer. How do I explain my joblessness to potential employers? It’s quite a dilemma. There’s no good response. The truth won’t help me secure a job. It’s hard to imagine an employer excited to hire a person who was too sick to work for six months. Besides, my medical condition and history should be private. The only other option is to be untruthful, but there isn’t a lie I can conjure to adequately explain my situation. Employers don’t like gaps in employment, period.

Now, add in all of the medical bills I acquired over the six month period -- two surgeries, three ER visits, several doctors’ appointments, and expensive medication. Trust me, the math is depressing. When I was fired, I had just met my insurance out-of-pocket maximum for the year. I had to start all over with my new insurance. (My difficulty finding insurance coverage is a whole other story). The only insurance I was able to obtain comes with a hefty $5,000 deductible and they don’t pay a penny until I hit that amount. Ouch. Since I have no clue how my endo will progress from this point, I have no idea what medical needs may arise. Any medical care will be expensive. I guess I was lucky to even find an individual insurance plan though; my husband was denied coverage by every local insurance company due to a pre-existing condition.

My list of financial worries goes on and on and on. I don’t know if I’ll ever get back on track and it’s terrifying.

Most days, I don’t let money concerns consume me. I remind myself of all of my blessings. I try to keep it all in perspective and remember it is just money. However, I do have days when the weight of my financial worries collapse upon me and make it difficult to breathe. I need to have faith and believe I will make it through this tough time. When I get stressed about money, I have to remind myself that my financial troubles pale in comparison to the physical and emotional pain my endo symptoms have caused me.


Thursday, March 17, 2011

Thanks for all the love and support friendos.

I am feeling better today. Just in time too, because my friendo scored us front-row seats to a local university's fashion show. I'm excited. I've never been to a fashion show. I need a girls' night out.

Happy Saint Patrick's Day! I just finished some errands and enjoyed seeing all the green-clad folks about town. I happen to be an Irish girl, so I particularly love this fun holiday. People always seem cheery on St. Patty's Day. (Which may or may not be attributed to the green beer and shenanigans).

I hope you are enjoying your day!


Tuesday, March 15, 2011

I try, every day, to be positive. Right now, the only thing I am positive about is that I'm scared.

I spent the last week suffering (on and off) through my endo symptoms. My cramps came earlier than usual and they are still causing me grief. They should be gone by now, but they are worse than yesterday. Going to the bathroom tonight was painful, and it brought back terrible memories of when my endo was at its worst. I can't stop thinking about what I cannot see. Do I have new lesions? How fast are they growing? Where are they growing?...

I think what's scaring me the most is the difference in my symptoms this month. Since my surgery, my "normal" experience has entailed: pain one or two days before I start my period, an increase in pain when I start to bleed, then each day the pain slowly subsides. Usually by the third day, I'm almost fine. I have not followed the pattern this time. My cramps don't usually come and go. They stay and follow their normal pattern, and then they go away until next month arrives.

This month, I started a new workout and nutrition plan. It has been going quite well and I thought it might be helping my symptoms. I was so proud I was able to continue my workouts through my cramps. But today I just couldn't do it. I was in too much pain.

I'm not sure what all of this means. I'm probably over analyzing every little detail in my head. That's what worry is, after all.

I feel vulnerable to my biggest fear: I don't know if I have the strength to go through the level of misery I experienced last year. I can't imagine returning to that dark nightmare.

Am I overreacting? I have no idea. I wish I could see my insides. 

I know these feelings will pass. Tomorrow is a new day and I'll likely start to feel better. But tonight, all I want to do is cry.

Sometimes, the lining just ain't silver.