Are you familiar with John Green, author of The Fault in Our Stars? If not I highly recommend a number of his books including this one as well as his newest, Turtles All the Way Down. The latter was a pretty good story but what I love most is his ability to put complex feelings, that can seem so impossible to describe at times, into a mere few sentences. Like the part below which helps me to share my most current state of mind and body:
"That sounds really scary," he said. I just nodded. "Do you feel like you're getting better?" Everyone wanted me to feed them that story--darkness to light, weakness to strength, broken to whole. I wanted it, too.
"Maybe," I said. "Honestly, I feel really fragile. I feel like I've been taped back together."
For months I've thought about updating the blog, sharing ideas, thoughts, and stories as I continue to meet people who inspire me and experience so many ups and downs I know others can relate to. But something stops me, the inner critic that doesn't want to disappoint because of my so-called failures. A fear that if I share what's going well, it will soon fall apart...and then what? What will people say I did wrong or not try enough of?
When someone is living with a chronic illness of unknown origin, when there isn't an etiology that enough medical professionals can agree on, not to mention a for sure diagnosis, no proven treatment plan to say, "Okay, this is what we do next"...where does that leave us?
These thoughts have never felt more real than this last week when reality set in that I am in a way starving to death. There it is, the words I fear saying most. I'm not trying to be dramatic, in fact, writing that feels pretty ridiculous in of itself. Who out there can eat this much and yet actually starve?! This isn't a third world country and I'm not missing any vital organs. In fact, all scopes, labs, and numerous tests show I'm doing great, A+ on paper. Well, apparently I continue to be a mystery and defy all odds.
Without writing a novel in one post (because we all know how our attention spans are these days!) I'll give a brief summary of what I'm calling my "feeling great decline."
September - After safely being on TPN (IV nutrition) for 4 years I got a scary staph infection in my port that quickly turned septic and left me in the hospital for a week. The port was removed and PICC line placed to restart TPN along with a 2-week dose of IV antibiotics. NOT fun.
October - The PICC line caused many problems with both nerve pain, due to being placed through the brachial vein (apparently I don't have many in my arm that are useful at this point), and eventually infusions because of some kind of kink. This was removed and my team suggested another port be placed immediately.
November - During all of this I wasn't feeling so great with TPN but for some reason, my gut seemed to be tolerating more food. Determined to give this a try I chose to use all the resources I had (support from friends/family, oils, meditations, nourishing foods, gentle exercise, enjoying life, etc.), and hired a dietitian to help create plans for meals and increasing calories. I felt confident this was my time to heal.
I'll admit it wasn't easy at first. We began adding in more foods and increased meal frequency and portion sizes slowly but it was pretty painful for about 3 weeks. However, it was different, the pain wasn't like GP pain I had experienced in the past and it felt like things were waking up, like a muscle being worked again. Once that passed I thought it truly was possible, I could do this and never be on nutrition support again! No more IVs and pumps and fears of infection! By January I was getting in an average of 2000 - 2200 calories, which may not seem like a lot but for someone who struggled to get 500-1000 for years without serious pain and constant problems with GI motility, it was an enormous victory.
Sadly, despite all of this I wasn't gaining weight and eventually it began to drop, at first a pound every 2-3 weeks and then this last month, a pound almost weekly. We played around with different meal plans and foods, adding in more fats and nutrient-dense meals. I had 600-700 calorie smoothies, potatoes and root veggies, wraps, noodles, full-fat coconut milk in soups, good proteins including salmon, prawns, chicken, eggs, turkey, and fats like ghee, olive oil, avocado, nut butter, and egg yolks to meals. Even though I was able to eat so much more I still deal with serious sensitivities (cramps, pain, mouth sores, reflux, etc.) so when someone would say I just needed to eat ice cream and junk food, that just isn't my answer. Though if I could I would happily dive into a bowl of Ben and Jerry's after a dinner of thick crusted, cheesy pizza. TRUST ME! But, we planned carefully to make sure I was always meeting my goals with the array of things I did well with and many foods that weren't considered "GP friendly," something else that encouraged the idea that I was truly moving past it all.
This last month we tried to add more but anytime I would push I felt awful. It's like my body is set on what it can take in and won't tolerate much more. This happened on TPN as well, which is why I was eating a lot less when getting 1100-1500 calories through an IV. I could eat a couple small meals but more than that and I would have terrible pain.
Last week I finally had to cave. My weight has dropped significantly and entering the danger zone. I'm mad at myself for letting it go this far but I was just so determined and excited about what was happening, I thought if I just kept trying because again, who really starves to death eating this much? Reality check - me if given enough time and no medical intervention. There were some weeks of outpatient hydration therapy to see if that might help but my veins tend to easily blow, roll and scar, which is exhausting in itself to deal with constantly. Thank goodness it's winter and I can hide these wounds under sweaters, otherwise, I can't even imagine what people in public would think I've been up to. Next, the calls began, with the help of my husband and amazing friends (don't ever underestimate the power of asking for help when you are down and out!) and a new port was placed last Wednesday. Things don't feel anywhere near as easy as they did when I had my first one. Only two days later I was in the ER due to complications and some of them continue to test my patience and strength.
I can't even begin to describe how hard this has all been, not just emotionally (think grieving - shock/denial, anger, depression, panic, acceptance) but extreme physical breakdown. While not wanting to offend anyone who has actually lived through a war zone, at times it's the only way I can describe what it feels like. As if my body has gone to war and is trying to find a new normal.
Tonight will be my fourth back on TPN and I'm not sure where things will go from here. There are some challenges that need to be addressed and yet again, some trauma to recover from, a topic I would love to dive deeper into here in the near future. While I enjoy sharing inspiring stories of healing and tips for living our best, there seems to be some space now for what is not always easy to hear. Challenges that can be incredibly tough for some and coming to grips that it's okay to not always have an answer or a plan. For now, I will just focus on what I can do, even if that means holding on to what I can and letting go of the rest.