Saturday, September 3, 2016

Keeping It Real

It’s interesting that in today’s internet connected society where we have access to more people and more friends in the far reaches of the world that we can be the most disconnected. We choose what tidbits of our life we want to share and the screen makes it easy to hide the rest. Easy to hide any pain, struggles, or suffering. Easy to plaster the smile on our face for the photo or type out a :) to convince people we are great and life is full of sunshine. Somehow in all this, it almost feels taboo to speak of any struggles. People respond with, well, it could be worse, first world problems, at least it’s not cancer, everyone has struggles, etc. This is all true and meant to give perspective, but does that lessen the importance of any single one person's struggle no matter how minor? Does it lessen their need for love, support, and a place to share and find community? Does it make any of those struggles less real? No. How we each deal with a struggle will differ greatly. That is the beauty of our individuality, but sharing is also how we develop compassion, understanding, and perspective for our own lives. So I’m going to share because I KNOW there are others out there walking some of the same paths I have and feeling so utterly alone when that is far from the truth.

Beginnings. There are always a lot of beginnings in life. Periods that start in motion some phase or time frame in our existence. Sometimes these time frames are good, sometimes tough. December 2013 was probably my most recent beginning. It was the start of an approximately 3 year phase that has come with some serious highs and lows.

Let me begin by saying that none of what I write here is meant to be a complaint about my life. I have struggles, but even in my darkest days I love my life. I am still surrounded by so much good and am so lucky for what I do have. I KNOW that and appreciate it with all my heart, but things still get tough. I struggle, and the past three years have been particularly challenging for me as a woman, a wife, a mother, and a friend. A lot has happened, and up until now I too have been guilty of sharing mostly just the good tidbits and not “keeping it real.” So let’s make it real.

Everyone that follows my blog knows all about this one. Oral immunotherapy for my oldest’s food allergy to peanuts. This December will mark 3 years since Big Monkey took his first bite of peanut (May marked 3 years from our consult visit), and it has been an adventure. This adventure has been mostly fantastic. We are gaining huge freedoms, but I won’t say it didn’t come without its price over the past 3 years. It hasn’t been easy. The beginning was rough. The middle was ok, but still took a ton of concentration, daily effort, adjusted schedules, missed social engagements, and even some offended friends. The process was supposed to be no more than a year. Instead reaching graduation took 21 months, and here we are at almost the 3 year mark and are still struggling. That’s right, peanut land is not going perfectly at the moment. It seems that Big Monkey’s environmental allergies are throwing a kink in the system and making him react to his weekly peanut dose, so he backed down to a smaller dose 3 times a week instead. Not a huge setback, and of course he is still SO MUCH safer than before, but this mama is looking forward to no more reactions. His most recent was quite scary and lasted for about two hours. Thankfully, he is doing great on the smaller doses and we have an appointment very soon to figure out what is going on and what to do next. Either way, watching my child eat his poison has been an emotional process. Watching him have even mild reactions is a heart stopping moment that no parent ever wants to experience. It’s like watching your child start to die and wondering if you can stop it in time. Ok, sometimes that is exactly what you are doing. One day in the future his IgE WILL hit zero (I’m determined that it will even if it takes a decade!), and this will all be a distant memory.

Hard to see, but this is his sad little middle of a reaction face. His left eye has hives underneath it in this photo. 
We all experience loss at some point in our lives. Your best friend moves away. Your beloved pet dies. A family member or friend dies. No one is immune to loss, it’s just a matter of how long someone can go in life before that loss occurs. For some, they are well into adulthood. For others, like my boys, they say goodbye to a loved one at a young age. Timing doesn’t matter. It’s hard no matter your age. It’s been a year and a half since I said goodbye to my grandfather but his absence is still apparent every single day. Even my boys mention him at least once a week to this day.

More acronyms! Obsessive Compulsive Disorder. Ok, so this section really should be titled OCD and anxiety because the truth is that for me they really go hand in hand. That’s right, I have OCD. Not the “oh I’m a little strange and like things done a certain way most of the time” OCD, but the bona fide, diagnosed by a psychologist, consumes multiple hours of my day, interferes with life kind of OCD. Yeah. It sucks.

Here is a description of OCD from the Mayo Clinic:

“With OCD, you may or may not realize that your obsessions aren't reasonable, and you may try to ignore them or stop them. But that only increases your distress and anxiety. Ultimately, you feel driven to perform compulsive acts in an effort to ease your stressful feelings.
Despite efforts to ignore or get rid of bothersome thoughts, the thoughts or urges keep coming back. This leads to more ritualistic behavior — and a vicious cycle that's characteristic of OCD.”
Yup, vicious cycle just about sums it up, and good luck breaking that cycle. It’s possible, but it’s intense and so not fun. I was actually diagnosed with general anxiety disorder (GAD) and OCD tendencies back in college, but the full OCD didn’t really start kicking in until my last semester in college. It wasn’t severe until my first year of graduate school. That is when the extreme ritualistic behavior set in. No one seemed to notice though and I managed to go on with life. That extreme period lasted for maybe two years and then it seemed to subside for several years. I’m not sure what the trigger for that period was nor am I sure what caused it to fade, but it did. Then it came back with a vengeance sometime in 2014 or 2015. I’m not sure exactly when it started on when it got bad, but by early 2015 the extreme ritualistic behaviors were back. By summer 2015 I could hardly leave my house for anything that wasn’t necessary. Needless to say, that was hard on the ENTIRE family. It takes awhile to come to terms with the idea that you are not quite right and accept that you may need professional help, but at that point I knew that I did. So I sought help and went through my second round of cognitive behavioral therapy (I went through my first round of CBT in my junior year of college to help with anxiety). CBT is the most uncomfortable and anxiety producing process one can face, but when done correctly it is effective. I spent 6 months working with an amazing professional who pushed me so far out of my comfort zone that I hated her at times.
I officially “graduated” from therapy back in early May, but I’m far from perfect still. She helped me break some of the compulsive cycles and thoughts in the early months when it was too intense to do on my own. She was my sounding board when I thought I was losing my mind. Then she armed me with the skills, tools, and awareness to be able to continue my practice of breaking compulsive cycles and changing the way my mind thinks. I have spent the last year literally retraining how my brain and body respond to stimuli. This takes a lot of emotional effort on a daily basis and is sometimes utterly exhausting. A lot of my friendships have been ignored or put aside because I just have not had enough energy to tend to both. However, my husband exclaimed about mid summer that we have “done more things in 2016 than we have in the past several years combined!” So I’d say that speaks positively to my efforts and recovery.
I will likely always have some idiosyncrasies and probably come across as quite strange at times, but I really don’t care. I’ve gotten past worrying about what people think. It’s the only way I can go out and enjoy myself. There are still things I don’t do right now. I won’t touch a doorknob and shoes inside my house are an absolute hard line no. They are “triggers” for me (and these are not my only triggers, but are the ones I am willing to admit to you). I will continue to work on them and one day they may be gone, but it happens in baby steps. People look at me strangely sometimes, but I really don’t care what they think. So I’m weird. I’ll still smile at you and say, “Hello! It’s a gorgeous day today. Have a wonderful afternoon!” I won’t murder you in your sleep, so what does the other stuff really matter? I think for the most part I’m still fairly fun to hang out with, and hey, at least you know I won’t be judging you for anything.
I look fairly "normal," whatever that means. 
So in the middle of all that OCD pleasantness, I also started to feel extremely run down. Looking back, that probably started around the same time as the OCD started to spike. Naturally, we all thought it had to do with the stress, anxiety, and OCD. It’s an exhausting disorder. Then I kept gaining weight and no matter how much I ran or ate well, it was not coming off. Thanksgiving weekend was a red flag. We got up to go to a potluck at 11am. I got up and made a loaf of bread beforehand. On the car ride there I looked at my husband and said, “I so do not want to go to this. I just really want to go home and go to bed because I am so damn exhausted.” He thought it was my OCD and wanted me to fight through it. I did but I told him something wasn’t right because I just wanted to crawl into bed. I couldn’t get out of bed even if I slept until 8am. Not normal for me at all. Bloodwork showed my thyroid was low, so in December I started medication. Within the first month I started feeling better, but it took a good 6 months for me to really feel more like my normal self again. At this point I feel mostly normal, but other hormones and medications can affect the absorption of the thyroid meds, so I’m currently feeling a little tired and waiting for another adjustment this month. I’ve also discovered that my OCD seems to be closely tied to my hormonal balance (not suprising), so that’s been challenging too. It’s a dance I will likely play off and on for the rest of my life, but glad that I have an answer with a solution.
As if all of the above is not enough for the past three years, right? Nope. In the Monkey household we like to do everything at once. Apparently we like crazy. Lol. Yes, you read that right. Infertility. I am young and healthy with absolutely nothing wrong according to medical tests. Same goes for my husband (well, except maybe the young part - he does have a number of years on me). I have had two spontaneous pregnancies in the past, and yet we apparently cannot have a third. This journey also started in December 2013.
Since we got married we talked about having three kids. That was our hope and plan. All was on track until Baby Monkey was born. There were complications with his birth that led to a doctor giving us the advice for not having any more children. So we faced the fact that we were done. It was a sad time. I tried to let go of the dream of having one more baby and did ok, but really I was sad. In December 2013 we decided that we were going to find a way to have a third even if it meant surrogacy (which is quite a complicated and expensive process come to find out). In the process of looking for a fertility specialist that would help us with surrogacy, we were advised that my medical record showed no suggestion that I could not have a successful pregnancy so long as I had 1) close observation and 2) an early c-section delivery. So I sought a second opinion from the doc that would be my delivery physician. He concurred with the specialist and said that if I were his wife or sister, he would say go for it. So we decided that we would. There were steps involved in that since we had taken some permanent steps to prevent a future pregnancy (in reality, almost everything is not truly permanent), so it took awhile. But summer 2014 we were hoping to be expecting soon.
Months went by with no news, but that was ok because we weren’t in a hurry. Then a year went by. We sought the advice of a few doctors, but everything looked normal and they said we just might need a little more time. So we gave it more time. By a year and a few months, we decided to pursue more tests and speak with a fertility specialist. Everything looked great on paper, but they offered us fertility treatment. So we gave it a shot. We tried for three cycles with the fertility clinic. From what I read, 90% of the successes for the method we chose would occur in the first 3 tries. After the third, the chances of success diminished each cycle. The hormones, while mild compared to some fertility treatments, were enough to drive me out of my mind. I felt like a crazy person with mood swings for half the month. So we decided that three cycles would be our limit. At that point it would have been 2 years since we started trying.
Needless to say, I do not have good news on that front. We called it quits on trying to expand our family at the end of July. It was a bittersweet day. I am sad that I will never feel another flutter in my belly, never nurse another baby, never have the family that I envisioned, but I’m also glad to be done with the emotional rollercoaster that comes with the monthly expectation that maybe there will be good news only to find disappointment. I’m not delusional though, I know that while there will be so many things I will not have, I also know that I will not have to endure having my body be on demand to someone else, smelling like spoiled milk, sleep deprivation, wiping the poo off someone else’s behind for 4 years, or the many other struggles that come with having a baby. I know I have two beautiful children, and trust me, I am spending my time with them to the fullest.
However, it is not easy to say goodbye. It is not easy to close a chapter on your life that you thought you would have. No amount of what I do have will fill the small void of the person we wanted to add to our family. They will always be missing even if we never met them. That is ok, but it’s also ok for me to be sad and mourn their absence.
My first baby 
Even with all of the above there has been so much good. There is more time in 3 years than the few negatives above could possibly fill. I have watched my babies blossom into amazingly talented little boys. I have found the courage to face my demons and realized that I am a much stronger person than I ever thought before. I learned what amazing friends I have to stick by me even in my silence. I have been taught patience which was not a virtue I had in the past. I have found peace in who I am, flaws and all. I love where I live and the community I am a part of. Best of all in the past 3 years is that we now have a plan for my parents to move closer. I have always been saddened by the fact that I ended up living so far away, but they presented a 5 year plan to move up to the Bay Area just last year. Then my amazing husband countered their plan with a new one that gets them up this way even sooner. So my excitement on what the future holds is great. I have an amazing husband, children, and family.
My crazy, adorable little family 
Today I share after years of silence because life is good, but I have learned that even when life is not good, it’s okay to say so. We all need to lean on each other. I constantly hear the saying that it takes a village to raise a child, but you know what, it takes a village just to live. That includes being there for each other. So if you are struggling with anything no matter how big or small, reach out if you need to. I’ll be here. I’ve always been here.

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