Monday, August 28, 2017

My third PITA-versary

I often find myself in a place of reflection on anniversaries. Today is no exception. August 28, 2017 marks three years since brain surgery. I am so glad I did not have a crystal ball four and a half years ago when I made the first appointment to find out why I was not feeling well. Hope is such a wonderful thing. Throughout this journey, I have consistently thought relief was just around the corner, 6-9months out. I can do that--I mean, women have been surviving crazy symptoms for centuries in 9 month segments, right?! Honestly, if pregnancy lasted 4.5 years, humans would be extinct by now. I love my kids as much as the next person, but I certainly would not have signed up for that more than once, if even at all.

As this anniversary approached, I spent a lot of time thinking about where I am now, what I have lost, what I have gained? Am I healthy now? What does healthy even mean to me? Finally, whether or not I can unpack my bags from this journey. Am I home?

I noticed that I was spending a lot of time focusing on what I had lost. On the surface, I had lost a lot. One of the most noticeable was that I can no longer sustain many forms of physical exercise. Most of the activities I used to engage in I cannot do: spin classes and long, hilly bike rides, TRX, weight lifting, and running. Prior to my illness, my nickname was the Energizer Bunny. Not only would I do these activities, but I would usually do 2-3 of these every day. I had so much cortisol in my body (unbeknownst to me), that I naturally did this to dump the excess. Since I can't sustain these workouts, I no longer enjoy teaching these kinds of fitness classes. I tried to teach them, but I realized it was a constant reminder of my limitations, which was not doing me any favors. Teaching classes was both a social outlet and a way to give back to the community, so I felt this loss on more than one level. I saw many of the people in my fitness classes several times a week for many years. I knew the little things going on in my students' lives and felt very fond of many of them. When I gave up teaching, most of these relationships understandably were lost. My students still needed to spend the time we spent together pursuing their fitness goals and I had little energy for social activities anyway.

Another activity that I enjoyed very much prior to my illness was making jewelry. Mental focus and energy levels were both affected by my illness, so sitting down to be creative was difficult to manage. I still had the skill required to make simple jewelry, however, those of you who know me well know that I was never good at assembly line jewelry making. It was the creative process that filled my bucket.

Relationally, the illness stole abilities from me as well. Prior to my surgery, I had so much cortisol that I was essentially experiencing 'roid rage. My girls and I referred to myself as the momster, which sadly, was pretty accurate. I actually hit my husband one day, which, thankfully, shocked both of us. Along with the anger, my memory was affected. I could no longer remember the little details in my loved ones' lives. I forgot entire conversations. I couldn't focus enough to problem solve. I had little energy to even listen--let alone get dolled up and go on a girls' night out or date night with Mike. Slowly, each of these issues has improved. Yes, they impacted many of my relationships--some even permanently. So, relationally, there have been losses, but is that the end of the story? Wouldn't I have had some losses relationally over the last 4.5 years anyway?

That led me to consider the changes in relationships. My kids--I realized that I was judging my current level of interaction with the level of interaction prior to my illness. My kids were 6 and 7 then. They were still in the stage where they needed near constant supervision and interaction from me. Now, we are at 11 and 12, in the stage where they are more independent, enjoying playing without my help (I can't say I miss pretend play with My Little Ponies). They want to know I am available, but don't want me constantly interacting. I think I can give myself a pass on that change as it would have happened, tumor or not! We are able to joke about the momster days, have begun to navigate pubertal changes with way less drama than I imagined and I am truly enjoying this phase of watching my girls grow up. This example really highlighted to me why we should pause and unpack the negative thoughts in our heads. Often when said out loud, things aren't as bad as you believe they are when they are bouncing around unchecked!

My friendships--Am I as good of a friend as I used to be? There is a reason that people say that you find out who your true friends are in times like these! I will admit that being a little hurt that some of my relationships didn't make it. A lot of that I put on myself, I just didn't have as much for other people, so I wasn't the kind of friend I used to be. Honestly, though, we all have needs that need to be met. I wasn't meeting them for others and the need to get them met just didn't go away for others. They still needed to get those needs met through other relationships. We all have only so much time and energy. Many people reached out in big ways in the beginning and cheered me on periodically on Facebook (which I really appreciated). However, I was sick and needy for A LONG TIME. I didn't always look sick and needy, but it was a long time of me sucking up others' resources without giving back. On the flip side, many of my friendships were strengthened during this time. I have some AMAZING girlfriends--ranging from 40+ years of friendship to about 4.5 years, or less. These women have carried me through this journey and I am so thankful to truly know that there are not limits to our friendships. I have noticed another positive aspect to fewer friendships, and that is that I spend more quality time with them because I am not spread so thin. Again, once I really unpacked the facts, it is allowing me to let go of the negativity surrounding these changes.

My marriage--honestly, we are the cliché. Stronger after the storm is an apt description of our marriage. I am going to be really real, it was rough at times, y'all! He was stressed and stretched by my inability to handle any of the load. He also lost his person. I was not the same. My heart was the same, but I was so deconstructed. All the "stuff" that we think makes us who we are was removed. I could not longer do anything for anyone else, I looked different, I acted different, my intelligence was affected, my self-confidence faltered. The upside of all of that is that I had to really look at who I was. Turns out, even without all of that "stuff", I still liked me. My heart is true. I no longer apologize for disappointing the masses. If I am not your cup of tea, that is fine--I can't be everyone's nor do I want to be! Now that I spend less of my energy on so many other people, I have more for my family. This has been a huge boon to our marriage! Another thing that truly helped our relationship was getting to the other side. I learned that when he said, "...through sickness and in health", he meant it. I am forever grateful. We went to therapy to keep our relationship strong. We talked about the tough stuff. We kept at it and we didn't lose hope that it would get better. Now, we truly appreciate how good life can be with less stress and we can trust the strength of our bond so much more after going through the storm.

My relationship with God--I have always considered God to be a big part of my life. My young life was on the mission field in Indonesia and after my dad died, my mom remarried a pastor. All three of my parents absolutely live(d) their lives relying on God. As many of you know, my life hasn't ever really been easy. I have a history that includes many trials and I have always been able to count on God to guide and heal my heart. He is always faithful. That being said, this journey and the failed adoption journey in the middle of it really challenged this relationship. Just as I had to lean on other relationships, I leaned on God hard. Our relationship got real. I yelled at Him, I begged for strength, and I asked others to join me in praying for healing. I was so vulnerable, and He was faithful. Now, we are on the cusp of adopting two wonderful kids from Colombia. Our three that we could not adopt are so close to being adopted by a family who better fits their needs. We have been able to maintain a close and loving relationship throughout the process. God has shown me yet again that He is good and He loves each of us so deeply. The intricacies of His plan through our adoption journey and the timing with my illness and my healing are so beautiful. Each of those details tell me how much He cares for me, my biological kids, the Ukrainian kids, and my future kids. I also know that I am no more special than you are. You have those same level of details in your life, as does every single person. That, is so cool.

Am I healthy now? Every time I go and see my endocrinologist, I hear more of the things I am at risk for. Early cataracts, greater chance of falling due to permanent muscle damage, greater chance of breaking bones if I do fall due to permanent bone density damage, higher cholesterol, risk of heart disease and diabetes due to my tumor, etc. Since I only have a portion of my pituitary, my thyroid doesn't get the signals it needs, so I am hypothyroid as well. I take a medication for my thyroid, which we are still tweaking to get the right dose. As someone who has always taken great care of my body, this can be depressing. However, now more than ever, I am taking care of myself. If I do not do self-care, I do not feel good. It is a non-negotiable at this point in my life. In order to thrive, I take a thyroid medication, go to acupuncture once a month (Amy Guinther is amazing), take supplements, get massages regularly, sleep 9-10 hours a night, avoid gluten, sugar and alcohol, and recently have added in daily yoga. For a long time, I fought having to do these things. I was annoyed I had to, they take so much time and I have so little energy. I wanted to put the energy into others, especially my family after so long of not being able to. Three years post-surgery and I have finally realized that I am thankful that I can do all these things. Thankful there are things I can do that help me feel healthy. When I do them, I actually have more energy to give to others. When I do them, I feel so much more like me. What a gift!

Speaking of yoga, I have finally found a form of exercise that I can sustain daily! Some days, it is just 10-15 minutes of gentle yoga and breathing, other days an hour of that, and then other days I can do a challenging flow class. I finally found a local studio that offers all of these types, Blue Soul Yoga in Waunakee. On the days that a class doesn't fit my schedule, I use my Yoga with Adrienne app. At the beginning of June, I set the goal of getting in 365 straight days of yoga. In the spirit of yoga, I do whatever my body needs that day. Twice in that time, I have missed a day. This matters not to me. Sometime in my lifetime, I will reach that goal. In the meantime, I am getting in more yoga than I was and I feel great. My flexibility is returning, my endurance is growing, my strength is improving (I even have baby arm muscles again!), my sleep is deeper, my pain level is decreasing, and my pant size is shrinking. I am also kinder to myself. If I would have realized the impact that a daily practice would have had on my healing (sorry I didn't listen, Katie. Genevieve, your encouragement to continue what I found in Mexico stayed with me.), I would have done this three years ago!!!

Other positives in my life following the removal of PITA (the nickname I gave my tumor)? It takes a lot to upset me these days. I let most of the little things go. I take things less personally. The drama factor in my life has greatly decreased (as long as you don't count my youngest in that equation). Focusing less on the unimportant distractions has allowed me to focus more on the big things. Deconstructing my concept of self and getting a second chance on life really led me to look at my purpose. Why am I still here? Am I wasting my time on earth? I have come to realize that for me it is relationships. It is giving love and often receiving it back. It is spending less time talking about making a difference and more time doing it. It is leaving this world better than it would have been without me. It is teaching my children to do the same. Once I am gone, there will be little physically lasting even a generation down the line. However, if I can teach my children to live their lives the same way, and they teach their children, etc. the ripple will be huge and unending. This desire led Mike and I to consider adoption. We will be leaving in about a month to make our family of 5 a family of 7. Luisa and Andres will be joining our family and I can't wait to see how much stronger each of us becomes after we adjust to the changes. It may be messy at times, but if I have learned anything, it is that life is a beautiful mess.

If you got to the end of this, congratulations on your excellent focus! As is usually the case, I write when the bouncing ideas in my brain get too loud. Putting the thoughts out here helps me gain perspective. Hopefully it gives you something to think about, too! As for am I finished with this chapter? Am I home? I am ready to stop seeing myself as ill? After really unpacking everything, I can say that I would not change this part of my life. Did I enjoy having my life upended? No. Not at all. However, I like who I am and where we are--I like where this journey has led us. I have learned to make the most of my new normal and embrace this stage. I am looking forward to using this new energy to expand and strengthen the bonds of our family. I am absolutely comfortable with me and my purpose as I walk this life. Yes, I am and home is a beautiful place to be.

My journey in photos.


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