A Physical Reaction

Over the holidays my stepfather suffered a heart attack which landed him in the ICU. It was very unexpected as he has always been a typically healthy individual. My family was shaken up, and spent most of our time at the hospital – just in case.

One afternoon my mother and I were sitting in one of the waiting areas near the main entrance when I saw a guy about my age coming in with two children in tow. As he got closer I realized it was Sam,* an old coworker of mine from a fine dining restaurant. I had just read on Facebook that his wife, Jennifer* (another coworker who trained me when I started) had given birth to their second child.

He was surprised to see me when I stood and was nice when I explained why I was there.

“You should come up and meet Amelia*, maybe it will cheer you up.”

I didn’t think anything of it, and was glad for the distraction.

A little known fact about me: I love babies. I caught this bug from my mother, who I deemed the Baby Stalker years ago. I love their smiles more than anything, and how that one sweet little smile can change your whole day for the better. But I was never certain if I ever wanted children of my own. I’m still not to this day.

When I entered the birthing suite (which, by the way, is more like a hotel suite at this particular hospital), I took in many things at once:

The warm, sweet scent of a baby. Toys and clothing from the other two children strewn about. Jennifer, who looked exhausted but happy. And finally Jennifer’s mother, whom was holding Amelia and rose to introduce both herself and the newborn.

“Would you like to hold her?” she asked

“Sure!”

Amelia was sound asleep; a warm bundle of fleece and soft breath.

As I pulled her into my body to cradle her, something unexpected happened: A wave of heat poured over me so intense I had to pull Amelia away from me. It was so intense that I awkwardly held her inches away from me, trying to not be rude. I soon handed her back to Jennifer, wished them luck and congratulations and headed back out.

Once in the hall, my body temperature returned to normal. I caught my breath and returned to the waiting area.

Sometime later it dawned on me: it was the first time since my hysterectomy that I had held a baby. And the wave of heat wasn’t just a hot flash – it was a wave of hormones.

It’s fascinating how the body changes and reacts to outside stimuli, especially when you are a woman chock full of hormones.

But all kidding aside: other than my physical reaction, I had survived my first baby contact without a complete breakdown. And I plan to cuddle many more babies to come.

*names have been changed for privacy 

White House Endometriosis Petition

It’s been a while since I’ve checked in, but I couldn’t let this urgent petition slip by without sharing.

The Endometriosis Awareness Campaign has initiated a petition directly to the White House to ask that:

 

 

• Endometriosis and other such disabling women’s diseases be mandatory research topics of Pharmaceutical companies
• Endometriosis become a mandatory class in ALL aspects of medical school
• Endometriosis be federally recognized as a disability
• Our reproductive organs be federally protected from being abused as political and religious platforms
• Women’s rights to the ethical treatment and restrictions of her own uterus as well as all reproductive decisions belong to her alone
• Any violation of these rights be prosecuted on the federal and local level as a hate crime

I urge each and every person I know to take a few minutes to sign this petition. Until more research is conducted into the confusing and debilitating world of this disease, and until our government takes this illness seriously, nothing will change, and women will continue to suffer and and receive poor medical treatment.

Click here now to sign the petition

If you remember nothing else, remember this: to date there is no cure for Endometriosis, and the so-called treatments available are not sufficient by any means. 1 in 10 women suffer from this disease, and often the only way to diagnose the illness is surgically. 

1 Year Later

Time flies when you’re… not in pain!

Today marks the 1 year anniversary of my hysterectomy. I am happy to report that I have been pain-free from Endometriosis and Polycystic Ovarian Disease the entire year! I have no regrets whatsoever, and will actually be celebrating this afternoon by having dinner and wine with my fellow Endo warrior, Kenna!

What have I learned in the last year about being surgically post-menopausal?

1 – Unbalanced hormones + unbalanced thyroid = one seriously mad stomach. It took several months for my digestive system to sort of “reset” itself. I dealt with a lot of vomiting and became dehydrated a few times. After a few hospital stays, it turned out my stomach was no longer processing food at the rate it was meant to. Lesson learned: Synthroid is a miracle drug. Truly.

2 – Energy! It returned, actually. After the stomach bout, my energy level slowly rose, and now I can usually get a lot done each day without feeling like I’m going to keel over.

3 – Surprisingly, I do not feel bitter when I see a pregnant woman, am invited to a baby shower, or even see a newborn. I am happy for them, and still want to hold (and squeeze) babies.

4 – There are other (ahem) “unexpected” perks that I will allow you to read about on your own time, if you so choose…

Lastly, after a conversation with a close friend last night, I realized that at this point in my life, I would be okay either way with not adopting a child (or children) or deciding to do so after all. I am content with life as it is now, and am glad to know that my friends and family support me.

Overall, LIFE IS GOOD when you finally get rid of all the unnecessary painful parts.

p.s. This blog has now had 1,270 hits since I began writing…! Hopefully it has been helpful, or given some comic relief to other women who have gone through the same nightmare!

The perks (yes, there are some) of a hysterectomy!

I write to you from my Mother’s hospital room. She had minor back surgery early this morning and is recovering nicely.

So here I am, sitting in the visitor recliner thingy and as much as I hate that Mom has had to have surgery, I can’t help but think (ahem… sorry Carrie Bradshaw): It’s not me in the hospital bed this time! Hot damn! Even Mom said something about the shoe being on the other foot.

Regardless, this is just one (HUGE) perk of not having to worry about broken ovaries or a defective uterus. Here are a few others I have discovered:

1) I will save all kinds of money not having to purchase tampons or pads! (I always thought the government should provide them, anyway) And one less person adding more trash to the earth.

2) Also saving money on underwear! We all have our “period panties,” but no more! I don’t have to worry about ruining another pair of underwear.

3) No birth control for me, thank you very much!

4) I hate to say it, but I won’t have to worry about becoming pregnant by accident!

But the biggest perk for me, personally, is that I am getting my life back. I was released to go back to work next week! I haven’t worked since April, and for the year I bet I’ve worked maybe 50-60 days. It will be so nice to regain some independence.

And so, I’m off on a new journey: one called “I’m no longer sick! Now I can live again!”

“Endo” le dictionary

I started pulling different editions of the dictionary off the shelf. There was “endo,” meaning “inside.” There was “endocrine.” But nowhere could I find “endometriosis.” It was not until the seventh dictionary did I find the disease defined. I was in shock.

I quickly flipped to search for other diseases like, “diabetes,” “cancer,” and even “leukemia.” They were all there.

Granted, the Endometriosis Association was founded in 1980 (the year Kenna and I were both born). It is a “newer” disease. And this is why sometimes a person looks at you like you’re speaking a foreign language when you tell them what it is you are suffering from.

So I figure some of you may not completely understand the ins and outs of the dreaded, “Endometriosis.” Here are just a few pieces of info to file away in your brain.

Endometriosis, defined

en·do·me·tri·o·sis [èndō meetree ṓssiss]n

presence of endometrium elsewhere than womb: a medical condition in which the mucous membrane endometrium that normally lines only the womb is present and functioning in the ovaries or elsewhere in the body.Translation: the lining of the uterus grows in areas it isn’t supposed to. It typically starts with attaching itself to the ovaries or fallopian tubes (inside or out). Causes/Theories It is uncertain what the cause of Endometriosis is, and this is why it has been so baffling to try and cure. However, there are a few theories: 1)      Retrograde menstruation: during your period, menstrual tissue backs up through the fallopian tubes, implants in the abdomen and begins to grow. 2)      Endometrial tissue from the uterus is distributed to other parts of the body through the lymph nodes or blood. 3)      Environmental toxins, specifically dioxin and PCBs act like hormones in the body and damage the immune system. (eg. Pesticides, herbicides, chlorine, cigarettes, chemicals found in certain foods, and even some nail polishes. 4)      Remnants of tissue from when the woman was an embryo may later develop into endo. 5)      Surgical transplantation is cited as a cause where endo is found in abdominal surgery scars. How a woman is affected Any of the following side effects are possible and are not dependent on the severity of the endometriosis: Moderate to severe pain (I could give you a list of all the ways the pain has been described, but this would be a very long blog) Pain during sex Pain during urination or bowel movement Unusual periods Heavy bleeding Infertility Inability to work Treatment Some doctors try to “fix” endo with contraceptives (oral and intrauterine). Oftentimes this treatment is basically “too late” to help with this disease. Others will prescribe different kinds of injectable medications that serve to try and shut your ovaries down, thus preventing further implants. These shots can cause more debilitating side effects than relief. The next steps typically include surgical intervention. I will write more about this if you all are interested. Please let me know. Also, Kenna and I have been working more on the Endo Walk, and are being faced with some negativity or those who just don’t take it seriously because they believe it will not happen. But I am here to tell you: It’s going to happen! So many people have no idea what Endometriosis even is, and it is our goal to change that. And maybe more dictionaries will add a new word to their collection.

And now for a laugh…

Has anyone seen my hormones?

There is this noise that occurs within us that no one else can hear. It happens when we plug our nose during high altitudes. It happens when we grit our teeth during a needle stick. And it happens when we try to drown out the jackhammering sounds of an MRI machine. It is a sort of white noise we use when we try to block out the world around us. It is this “noise” I force out when trying to muffle the sounds outside of my hospital room, especially the incessant laughter of a male tech that reminds me of a buffoon.

My left foot, hand and the left side of my face have gone mostly numb. I think back to the time in May when this happened and realize that the main difference now is this: my chest is as tight as a badly fitted bra, my skull, cheekbone and eye are throbbing and I am having trouble catching my breath. Between the hospitalist and the neurologist, four possibilities have been presented: 1) The absence of estrogen from the hysterectomy is causing the numbness 2) I have a blood clot 3) I have pulled an artery in my neck 4) I am having a complex migraine. I can’t help but worry that the Endometriosis has already spread to other parts of my body, and that the surgery was too late.

I lay in the hospital for two days only to be informed by my nurse that neither of the doctors would be in to discuss me my diagnosis, but that they have agreed that it is likely the hormonal issue and I need to start my replacement therapy ASAP. My nurse is obviously irritated with the doctors for not making an appearance, but she has been so nice and patient that I try to remain calm and collected. More than anything, I am irrationally angry that I am a patient in a hospital again at all. In a way I feel like I’m being “punk’d,” but no one magically appears to tell me it was all a big joke.

It’s amazing to me how nonchalant a doctor can seem when it comes to body numbness. “Because you’re so young, it’s highly unlikely…” blah blah blah. Please. I believe I surpassed the “highly unlikely” marker miles ago. And if a person has never felt parts of their body go numb, they really have no idea how terrifying it actually is. So now I wait, once again, for a doctor to pick up their sluggish feet and make a simple phone call to the pharmacy. And all the while be able to feel each toe of each footstep and each fingertip of each hand as they dial the numbers.