Friday, January 7, 2011

Stealing Back Control

If there is one lesson that I have yet to learn in this process, it is that infertility is completely uncontrollable. I have done my best to do away with Plans, but I still want to feel like SOMETHING could be somewhat predictable. It can't. So what can you do when you feel at the center of a world that is totally out of your control, especially if you a colossal control freak like me? Find ways to steal it back. It IS possible.

  1. Keep a record of all of your appointments and conversations with doctors. I have a pretty flowered notebook that I have kept since the beginning of this insane phase of my life. It has three sections--the first is for general information (consultation notes, background information on doctors in the clinic, alternative therapy information and notes, books I have read or will read at some point, etc.). The second is for recordkeeping--I write down all blood values, all follicle sizes and counts, everything for every cycle in this section. It is a little sad because I am running out of space, but it helps me feel more in control to have this information at my fingertips. I have run comparisons from cycle to cycle with my estrogen levels or follicular growth that have helped me to be a well-informed questioner at appointments. I can talk to others going through this experience and have hard cold data on what my cycles look like. Just writing down the follicles gives me a sense of peace at the end of each monitoring appointment because I am getting to do something constructive--I am not passively sitting on the table and relying on others to maintain my records. Being well-informed about my own responses has been incredibly helpful. The third section of my notebook is for dreaming. It has baby name lists (all very private, preliminary, and totally NOT agreed-upon between the two of us). It has bedding sets that I like and the stores that I saw them in (online of course, I am not a glutton for punishment and have not set foot in a baby furnishing store since beginning this process). It has our thoughts on parenthood. It has future blog post ideas. It is my 1/3 I allow myself for planning for a future that doesn't yet exist, my optimistic section of a cold hard data notebook. That also gives me a sense of control. I also have a notebook that I keep during each IVF cycle that chronicles each day from Lupron to pregnancy test--how I am feeling physically and emotionally. It is very helpful for comparing notes to see when I can expect to have my jeans disappear to the bottom of the drawer, or when I was particularly emotional, or how I felt during different ultrasounds. Knowledge and reflection are power. 
  2. Be well-read and well-informed. It is possible to go through this process and not know what the medications you are taking are actually doing to your body. But then, you are definitely giving up all control. I must know what my protocol is, what the medications do, what is happening (or supposed to be happening) in my body and out for each cycle. I need to know the intricate details of what the cycle looks like and why. I have read countless books and articles on infertility, well beyond the list on the sidebar of this blog. I need to know what is out there and what is happening in my body every step of the way. If I can't control the outcome, I can at least control the information I have about what's leading me to that outcome. 
  3. Be a tireless self-advocate. Points 1 and 2 lead up to this one--if you read about a new protocol or medication, or if you see something in your notes that lends itself to a pattern, do NOT be afraid to ask your doctor or team about it. Do not be afraid to challenge what is said to you about your best course of action. Your doctor may see hundreds of patients in a year and you are just one of them--it is possible to forget something or fail to thoroughly review a chart. It is possible that a test could be overlooked that you need to rule out possible treatable issues and you will only get that test in a timely manner if you ask for it. Being well-informed lends credibility to your challenges and requests. Listen carefully and take notes--everyone is human, including highly educated and experienced fertility specialists. Never, ever take something at face value because it came from someone with authority. Trust your instincts and question what is going to be done to your body, because ultimately it is your body.
  4. Do things for your body. I can't control my body's response to medications, but I can control what goes in my body and how I nurture it. I have been lax on the super healthy eating front because I just can take so much restriction at this point, but I will not compromise on some things--my produce, milk, eggs, and red meat MUST be organic. I now take Ultra OPC (a grapeseed oil and vitamins A & C supplement that helps circulation, joint health, and possibly follicular development and egg quality) and high-quality fish oil in addition to my prenatal vitamin and vitamin D. Fish oil was a big compromise for me because I hate fish burps like crazy, but these (while expensive) are triple-distilled and lemon-flavored, so that you get lemon burps instead of fish burps if you burp at all. But, in addition to heart health and fetal brain development, fish oil can improve your lining quality. So while the burps are gross, they are worth it. I go to yoga for fertility almost every week and nourish my body with restorative yoga that lengthens my spine and increases blood flow to my pelvic region. I go to acupuncture for fertility that realigns my energy and has even decreased the bloat that comes with stimming for a time (amazing!). I go for Maya massage to realign my reproductive organs and make my uterus happy. I go for relaxation massages to keep my muscles relaxed and happy. These are all time-consuming and expensive, but worth it for the sense they give me that I did something that contributes to my cycle outcomes. Even if the outcome is the same, I was a contributor, not just a passive meds-taker. 
  5. Do things for your soul. The yoga and massages definitely fall into this category, and even the acupuncture. They force me to relax and to have time to visualize what is supposed to be happening in my body. The guided meditation MP3s that I've mentioned before definitely fall into this category. The more I can direct my subconscious power, the more power and control I have (or at least feel) over the process to some degree. Support is definitely part of this. I have surrounded myself with support networks--online communities; community through my treatment clinic; and community through the holistic center where I do yoga, massage, and acupuncture. I have met more amazing, strong women who I believe will be lifelong friends through support groups than I ever expected. Through online communities I have people I have never met who live in different states who are rooting for me and I am rooting for them. Support nourishes your soul. It destroys the sense of isolation that this process can give you, because you can talk about it with people who have been there, who are there, who are going there. You are not alone. It amazes me how many people do not take advantage of support groups or networks--it can be hard to take that first step to share and be open even in a small and protected setting, but the effects it has on your well-being and sense of connectedness are so great. Utilize your friends who are not battling infertility, too. Tell them what you need. Limit time with those who do not seem to know how to support you during this time or who leave you feeling badly. Sound harsh? This horrible time is all about YOU. If ever there is a time in your life to be selfish, this is it. You need to nourish YOU. Take advantage of family supports, too--and remember that this is not just your infertility. Your parents want grandchildren too and are surrounded by people celebrating new grandchildren just as you are surrounded by people celebrating their pregnancies, babies, and small children. This awful process and disease is robbing them of a dream, too. Be a team if you can, and again if people cannot be supportive, limit time. I am extraordinarily lucky to have amazing family but have heard horror stories of unsupportive and insensitive family members. You can control how much time you spend with people who are not adding to your sense of support, even if they are family.
  6. Think in terms of gratefulness. Feel lucky for the things that you can feel lucky for. This process sucks, there are no two ways about it. I would not wish infertility on the most evil person on earth. It has robbed me of so many things and swallowed up so much of my life. BUT, in the midst of all this crap, there is still plenty to be grateful for. It can really help to make a list of the things that you have learned or discovered or have because of or in spite of infertility. For me, I have a lot of gratefulness in my heart. I have an amazing husband who is an excellent caretaker when I am down for the count with procedures, an incredible emotional support even when he is struggling with his own infertility-related emotions, takes on responsibilities and never complains when I am out more nights than not at all of my assorted appointments and groups, and always appreciates me. Couples divorce over the stress of infertility and we have spent our first year and change of marriage deeply embroiled in this stress--and we are stronger for it. I have gotten to see how strong we are in strife, so imagine how nice it will be when we are in more halcyon days! I am grateful for my friends, who call me unasked to see what I need and send me funny text messages like "Go eggs gooooooooooo!' at just the right times. I can always find someone to talk to, whether they've been down this road or not. I am grateful for the new friends I have made through support groups--people I likely would have never met otherwise but who are turning out to be close advocates, cheerleaders, and laugh-inducers. I am grateful for family who have risen to the challenge of supporting without being intrusive and respecting information boundaries set up for our emotional protection. I have never had to gently let a family member know that they have hurt my feelings. Well, once I did but I had misheard the offending conversation and then felt like a big jerk. But I had the courage to address it in the first place, which is huge for me. I am grateful that if not for infertiity, I wouldn't have a beautiful downward-facing dog (which I have been after for years!). My yoga practice has definitely improved. I am grateful for the strength that has risen to the surface during this difficult time--I can face so many obstacles and horrible phone calls and disappointments and devastations and survive them. I am capable of anything. I am (sort of) grateful for new skills I never knew I'd have--I can give myself subcutaneous injections in my own tummy with no help at all and no crying. And I can receive the dreaded intramuscular progesterone in oil shot in my ass without flinching. I am impervious to needles now. Bring on that epidural! I am also grateful that I have realized that my store of hope is a deep one. I have faced setback after setback and disappointment after disappointment, but we just keep moving forward because we have not lost hope. I am so proud of that, because it is incredibly hard to do in the face of what we are challenging. I have my moments of tears and hopelessness, and dramatic statements like "Hope isn't a thing with feathers, it's a thing with teeth!" and "My stupid 2011 bunny is a tangled mess on the side of the road!" -- but I spring back from them and keep the battle going with my sword of hope and shield of resilience in each hand. (Not to be dramatic again...)
It is possible to maintain a sense of control in this crazy, uncontrollable world of infertility. It is not easy to do--but it is possible. And I will take every chance I get to exert my personal, inner power over the Infertility Dragon. You can too!  

1 comment:

  1. Jess, very nicely written. Wonderful of you to recognize the "grandparent hopefuls" amongst us. I have been working diligently on my knitting skills for over a year now. I am not wanting to jinks anything, so I'm holding off on anything pink or blue for right now.