Thanksgiving

I’m sitting here enjoying my maple vanilla bourbon coffee from Saxbys and watching my local news station, and the anchors are enjoying their Thanksgiving breakfast, each announcing the things they are grateful for. I’d like to do the same. Let me start by saying, I’ve had a lot to be angry about. Angry with God, angry with doctors, angry that my ovaries broke and no amount of soy milk or chick peas or hormone treatment will put them back together. Angry that I am about to face my first holiday season with the knowledge that it is going to be a difficult uphill battle to have my own children for future holidays.

But I’m really grateful, too. Grateful and lucky that this isn’t the death sentence I felt it was in the beginning of the year. Grateful for those same doctors who sure, may have given me a lot of bad news..but I’m also happy they found out what was going on with me. And they have really been a huge part of my support system since January. Even the other day, I had one of my routine exams at the OBGYN and we talked about changing my hormone treatment and method because of my migraines and other symptoms. She had a lot of good advice to give me and took time to comfort me when I got upset. She really cares about what I’m going through. She calls me back quickly even when I feel my questions are dumb and that means the world to me. This is a bit of a learning experience for her too, because of how rare Ovarian Failure is.

I’m very grateful for the small handful of friends who I have shared this condition with, some of who are mothers. I may not have that to share with them, but that would never exclude me from their lives. 

Trust me, I’ve read a ton of horror posts where people lost friends and family over their inability to feel part of the discussion.

My best friend, most of all, has helped me remember how strong I am, and that what I’m going through doesn’t change the person I am. For 15+ years not a day goes by that I don’t constantly know how lucky I am to have her in my life. Even if we don’t see each other as much as we would probably like! And if I do get the chance to adopt in the future, or maybe by my 1-5% miracle chance get pregnant naturally – she’s the first person I will call.

I’m grateful for my boyfriend, Mike. I fell in love with him the first time he took me to his families cabin in the Poconos. He is caring, loving, supportive and funny..and just so understanding of me on my good and bad days. He always sees the good in me when I don’t. Especially now. I know this diagnosis hit us both really hard, and there’s been times we have both emotionally struggled in our own ways this past year, but it has brought us even closer. I remember how broken hearted I was when I found everything out, because he comes from such a large and wonderful Irish family with so many kids, and I really looked forward to adding on to that someday. I was so afraid he wouldn’t be able to deal with this. But the day I came home from the doctors, he told me it didn’t take a child to fall in love with me, and it wasn’t going to take not having a child to fall out. I’m truly blessed, and no matter what happens I look forward to whatever adventures we get to experience for the rest of our lives, even if it’s just the two of us.

I’m grateful for my aunt and uncle, who most people know I consider to be my parents. (I moved in with them when I was 17) Growing up, I’m not sure I ever got the proper idea of well..a lot of things. Family life, mainly. It took a few years to get used to it but I know they play a major role in who I am today. They let me be a teenager when I needed to be, and they let me learn from my big mistakes when I had to, and they have always stuck by my side when the going got really tough. They aren’t shy to share when they have made mistakes, and I value every opinion they give me, whether it’s something as simple as a dill carrot recipe – or advising me on huge life decisions.

I’m grateful that I’m alive. Things could have been worse than they are for me. Honestly. I have had a good 31 years so far and I’ve struggled through a lot of difficult times – I lost my dad when I was 15. My mom and my brother moved to another country just 2 years after that. I may not always feel like I have my life together, or make the best decisions, or have a lot of money..but I am a good person and have a lot to offer, and that’s something I’m thankful for regardless of all the adversity I have faced. I could have let facing early menopause bring me down to a dark place I couldn’t escape from. I almost did. I could have let it turn me in to a bitter human being. But I’m not going to. I’m glad I have made some great connections with other women who are going through the same thing. I’m glad I’ve been able to lend my advice and share my story and LEARN from those women, too. So tonight, while I swim in a sea of potatoes, stuffing and gravy..I will also remember how thankful I am for all of these things, and more.

What is POF?

Courtesy of the Resolve website (a national infertility association) here is some information I would like to share about Premature Ovarian Failure, for anyone who may be interested in some facts about this condition.

By Linda R. Nelson, MD, PhDPublished in Resolve for the journey and beyond, Summer 2012

Many women younger than 40 experience irregular menses (oligomenorrhea), and some women may even skip periods (amenorrhea) for months at a time. There can be many reasons for irregular or skipped menses in young women, but Premature Ovarian Failure (sometimes called primary ovarian insufficiency) is one of the less common causes.

Recommended Reading

About Spontaneous Premature Ovarian Failure, RESOLVE’s Questions to Ask Series
How one woman chose to become a voice for people with infertility, By Tonya Neufeld
Using Donor Egg
Premature Ovarian Failure (POF) affects 1 in 100 women younger than 40 years of age. This condition needs to be completely evaluated since there are often associated medical conditions that need to be treated. In addition, options for fertility may exist if a woman desires pregnancy.
Ovarian failure usually occurs at menopause when there are very few eggs and follicles left in the ovary. Estrogen levels decline due to the loss of the ovarian follicles that provide high levels of estrogen and progesterone during the menstrual cycle. The average age of menopause is 51 years of age and it is very common for women to have symptoms of estrogen loss and irregular cycles in their mid to late 40’s.
However, women with POF have symptoms of early menopause including hot flashes, sleep disturbances, vaginal dryness and painful intercourse along with a lack of regular menstrual cycles in their teens, 20’s or 30’s.
Making the Diagnosis

The first step in making the diagnosis is a blood test to check whether or not the ovary is producing estrogen and the whether the pituitary gland is producing the hormones FSH and LH that stimulate the ovarian follicles. If the pituitary hormones are elevated and the ovary is not producing estrogen, then the diagnosis of POF is made. A transvaginal ultrasound may also be done to evaluate the ovaries. In POF patients, the ovaries are usually small and there are few follicles seen.
Finding the Cause

In many cases, a cause for POF cannot be found. A history of chemotherapy or radiation treatment for a childhood illness is the most common cause of POF. There are autoimmune causes of POF. In these cases, the immune system attacks endocrine organs including the ovaries, thyroid and adrenal glands. Lab tests can detect some of the antibodies directed at these glands, but it is not possible to detect all the immune factors that may be important. Women thought to have an autoimmune factor will need to have their thyroid and adrenal gland checked regularly because failure of these glands can lead to serious or life-threatening medical conditions.
There are also genetic causes of POF. Evaluation of chromosomes is often the initial step. In rare cases, women may have Y chromosome material present, which can lead to tumors in the ovaries if they are not removed. More commonly, there is only one normal X chromosome instead of 2 and this is called Turner syndrome or monosomy X. Women with Turner Syndrome may also have heart, vascular or kidney problems that need to be investigated. Fragile X syndrome is an abnormal expression of a gene on the X chromosome that leads to mental retardation in boys when the defect is “fully expanded.” This genetic defect can also be present as a “premutation” in women with POF. There are other rare genetic defects that may also be diagnosed within families or as new mutations.
Lastly, there can be defects in the production or activity of pituitary and ovarian hormones. In these cases, follicles are present in the ovary but they cannot be stimulated to achieve a pregnancy.
POF Treatment Options

Loss of estrogen can lead to many symptoms (see above) that can be treated with estrogen therapy. There are also several medical conditions that may be prevented by restoring estrogen in young women. These include bone loss (osteopenia) and vaginal atrophy. The relationship of estrogen to heart disease in young women is still controversial, but a lack of estrogen leads to abnormal cholesterol and lipid levels that can be reversed by estrogen therapy. In women without any contraindications, estrogen treatment would be recommended for these symptoms and disorders until the age of natural menopause (around 50 years of age). The risks of hormone use are generally age-related, and your physician will evaluate whether there are any contraindications to taking estrogen and progesterone. If there are, other non-hormonal treatments can be tried, and a healthy diet and exercise are always recommended to prevent heart disease, osteoporosis and obesity.
Infertility results from the loss of healthy eggs and follicles. For young women with POF menstrual cycles can still occur even years after the diagnosis and 10% of women with POF will conceive on their own. This is likely due to ovulation of a healthy egg even after months of skipped menses. There have been attempts to treat women with ovulation induction agents or other medications to improve fertility, but there is a lack of clear evidence that these treatments work. Most women with POF will not get pregnant with their own eggs. However, it is possible to become pregnant and carry a baby using eggs from another woman with a donor egg in-vitro fertilization cycle.
Depression and anxiety are very common in women with POF. A therapist or mental health professional may be able to help with these problems. RESOLVE also provides in-person and on-line support groups that can be very helpful as well.
Linda R. Nelson, M.D., Ph.D. is a Professor at the University of Arizona College of Medicine, Phoenix and an OB/GYN at the Fertility Centers of Arizona. Dr. Nelson is Board Certified in Reproductive Endocrinology and Infertility and Obstetrics and Gynecology. Dr. Nelson specializes in all aspects of patient care including IVF, IUI, minimally invasive surgery and medical management of reproductive endocrine disorders. She has been recognized as a “Super Doctor” by Arizona magazine, and U.S. News and World Report named her one of the Nation’s Top Reproductive Endocrinologists in 2011.

Self Compassion

So, I recently found this wonderful support group on Facebook (The Dovecote Community) based out of the U.K. with so many women who face infertility for many different reasons. It’s been such a saving grace, even for the short time I’ve been a part of it, and what I love most is the topic questions the admin posts every now and then. The topic posted yesterday was to ask us how we would show ourselves self compassion this week. So I thought, well damn..I could turn these questions and my answer into a blog entry, duh.
Because of course after my strong introduction over a week ago…..I’ve been at a loss for words on what direction to take this blog next.

When I first got this diagnosis I was initially pretty devastated, obviously. But I don’t think I ever started to really go through my grief stages. I kind of decided a week later to just dust myself off and take the reigns and treat it like it was the common cold. Sure, I had days here and there that I forced myself through with some Kleenex, but then I had my pretend days where I was still having a bad day but if I didn’t have my Kleenex in hand I didn’t have to admit it was another bad day, right? Wrong.

I started having these days too often. And kept pretending to crack a smile too often, until they meshed into one big box of Kleenex and hiding in my apartment from everyone. I wasn’t, and still a little sometimes, am not facing this for what it is –  a lot bigger than the common cold. So the biggest way I can show myself compassion is to allow myself to feel every emotion that comes to me, whether it’s good or bad. I can’t LIVE in that emotion, but I need to feel it when it happens and recognize it for its purpose and then move on to the next. If there’s one thing I’ve learned from my own research and support groups, this isn’t going to get better or easier overnight. It’s going to take time and work, and patience, with myself, more than anything.

It’s perfectly acceptable to feel a little twinge in my heart when I see a commercial or movies with babies. Or pregnant bellies. It’s unavoidable. And Facebook…oh Facebook. News Feed was great until the day I left that damn doctors appointment. But sometimes I truly can’t handle all the ultrasound or school picture posts. I need to be okay with that decision and those moments that I RSVP “no” and not feel like I’m weak. I always pray that my friends and family would understand that too, if they knew. Who knows..one of these days I might make this blog public to them so that they do understand and don’t hate me for it.

It’s perfectly acceptable to have a night here and there where I need to just let out some tears, because I’ve turned down yet another baby shower invite to spare myself the heartache because I’m jealous of the people in my life who get to be called Mommy. Or cry because I’m having a mood swing and couldn’t stop it if I tried cause hormone therapy side effects are just effing fantastic.


It’s perfectly acceptable to be angry about this. But that is an emotion I’d like to spend as little time with as possible.


It’s perfectly acceptable to laugh about this. Who knew I’d be experiencing hot flashes and mood swings 25 years earlier than I’m supposed to? At least I’ll be able to help my friends and family navigate through “the change” when it’s their turn. I’ll have a book written and ready on tips and tricks by then. I’m also pretty effing hilarious, if I do say so myself, when I have to run in to the dairy cooler at work to hug the gallons of milk because I feel like my bones are on fire. Or when I text my boss from CVS picking up my HRT and I’m watching a kid throw an epic temper tantrum and say “damn..maybe this infertility thing ain’t so bad?” I can laugh about this sometimes. Or today actually when I realized I am either spotting or getting my first half ass period in a year and a half and I text my best friend to tell her fumbling for a tampon in the bathroom was like an elderly person trying to work a smart phone because I haven’t needed one in so long. Tampon? How do you work this thing??

It’s also perfectly acceptable to eventually come to terms with and accept this diagnosis, whether other people understand that or not. Even if that means I have a childless future. If it also means my story helps someone else, then accepting this is a big and important thing.


I will work to show myself more love and compassion. Face what I have to instead of avoid it internally. Remind myself I am not a failure as a woman for this and try to remember that God always has a reason and plan.  

XO.

The Couch

So here it is. This is my first post, and the best idea I had for an introduction was the same thing I typed up for my “about me” section. Which I’m not even sure where to locate, because I’m not sure how to properly blog. Or navigate sites. Or my app. Forgive me for the self training! Also forgive me because I’ll probably keep editing this post until I ultimately am content with the whole “Hello! This is me!”

Right! So. A little about me..I’m a lead barista at a coffee shop. I’m a huge Harry Potter/Criminal Minds/David Bowie/Jaws/Walking Dead nerd. I’m a people pleaser and a highly anxious introvert. I’ve had some dreamy long term goals that pushed me back to school a few times, but mostly for fear that everyone would think I could always be doing better than I am. I have recently decided, I’m okay with exactly who I am and what I do. I serve coffee to thousands of pharmaceutical lab techs and scientists everyday, and I take that responsibility pretty seriously. I’m good at what I do, and enjoy what I do. And I have a loving family, small circle of friends and a wonderful boyfriend who accept everything that make me..me.


Now for the need to blog part.

In January 2016, at the age of 30, I found out I was going through early menopause. Premature Ovarian Failure. For months I have had it in my mind to maybe blog about my experience with this, but I have never blogged before. Until I realized it was essentially a diary – just, an open to the public one. And I was always pretty close with my Lisa Frank and Disney diaries as a kid, and writing things down always worked for me. To unleash. To share happy memories. To doodle. To make someone out there aware, even if it was just my mother snooping.

The journey to this diagnosis was grueling, discouraging and long. It took several specialists and doctors visits, 4 different diagnoses, and probably $50,000 or more worth of tests and scans (praise Jesus for great medical benefits) to go from labyrinthitis, to 3 months of physical therapy for the weird vertigo, to maybe you have multiple sclerosis, to yes, we swear it’s migraine associated vertigo…to finally, my body had officially grown older about 20 years too soon. The irony was the first thing my primary care doctor assumed was I could be pregnant.

It’s okay, you can chuckle at this.

My final stop was a reproductive endocrinologist after it was shown in blood work that my hormone levels had me in the menopause range, which for a 30 year old woman and her 456 year old gynecologist was pretty remarkable..and not normal. So I sat in the REs office with my aunt (who is like my mom – not the diary snooper mom, but I’ll save that story for another day maybe) and she sat with me through one of the scariest appointments I’ll probably ever experience in my life. 

Your only options are donor eggs or traditional adoption.” And annually, I will have to go through routine blood work, keep a close watch on my thyroid, keep up with bone scans, and take hormone replacement therapy for the next 20 years of my life. That first sentence was the only thing I heard though, understandably enough. Because to be told you can’t do the one thing that you were born to physically do, that separates you from men..it’s enough to make you drink all the wine I have drank in the past 11 months.

But that stops now. Well I mean, I’m still going to enjoy wine, but not to mask my pain. I just don’t want to go down that road, I truly don’t. 

This has been a really hard year. And it’s something I’ll struggle with for the rest of my life. And I may not be okay some days…but other days I AM. I have a lot of other things to be thankful for. And I realized the other day that aside from taking care of myself right now, both physically and emotionally, and not with the help of wine, that the most important thing to me is getting awareness out there, and connecting with others going through the same things I am. How scary it has all been. How emotionally and physically draining it has been. How to better handle hot flashes. Night sweats. Brain fog. Migraines. Insomnia. An overwhelming fatigue sometimes. Weight gain. Emotional outbursts. Acne, AGAIN. Oily skin. Brittle hair. Hair falling out. Greasy scalp. Vertigo. Loss of feeling..desireable. And Lord, don’t even get me started on the hormone replacement therapy side effects like sore boobs and legs that feel like I’m made of concrete.

Emptiness. Bitterness. Sadness. Jealousy.

Infertility.

But above all, hope. That there still is some.

And you know, maybe I’ll throw in a couple positive entries about Harry Potter, or Jaws..or my abilities to make a layered caramel macchiato and genuinely feel that I accomplished something great that day. I just want this blog to be not only my first attempt to blog, but to be there for others even if it’s in a small way. Even if it’s just to show someone that I am here! I get you! I understand it! And I really want to focus on posting information about this condition, because in the past year I’ve realized how rare and misunderstood it is. Obviously it must be if I went from inner ear infections to menopause in a matter of 8 months of medical professionals.

Just knowing that someone else is out there and feels what you are feeling is therapy enough.