Seeing the Rainbow

I’m pretty sure this has been the hardest back to school week I’ve ever tried to push through. The pain has been unrelenting. I don’t even know how to describe it. It has been constant and exhausting. I have no idea how I will make it through five regular work days next week. I’m overwhelmed with those horrible feelings of not doing my job like I want and not being a helpful or present colleague. It’s beyond exhausting to “pretend” through each day just trying to seem okay. I pray this flare will subside and the pain will ease….. soon.

On top of all that comes with “back to school” we’ve also been dealing with a sort of loss. Our dream to have a baby, our own, biological baby, isn’t going to happen. All I can write at this point is that it hurts. It’s a deep, awful, hurt. I know though, that it is right. I know we will grow stronger together through this, but I know it will take time.

As if that isn’t quite enough for one little week, we’ve known something has been going on with my labs. We’ve known it must not be good. The news was quite different than we expected. A nurse I do not know called right after dismissal Wednesday and said she needed to schedule an appointment for me with Dr. Kern because they think I might have chronic kidney disease. There was no more information. She scheduled the appointment for September 5^th and said good-bye.

That’s a load to drop a person in passing. The prognosis for chronic kidney disease isn’t exactly full of hope. Thinking back, I’m wondering why this nurse even mentioned it. It’s not Dr. Olson’s style to discuss bad possibilities before we know more. My mind has been all over the place. One minute I’m scared and thinking about what this could mean for our future. The next minute I’m angry and frustrated. The next minute I’m ready to fight it with all I am.

Right now, I know that all I can deal with is what I know. Getting through each day in pain is enough. I know that I am loved. I know that we can and will rise up and fight hard to beat any obstacle my body or this world presents. I also know that as hard as it has been to get through this week, I can still see the rainbow. I have been given the gift of 23 beautiful second graders who need me this year. They are my reminder that I am needed and I have a lot more to do before this body is finished.

is it really the "best policy"

I'll start by admitting that I'm not in a good state of mind. I think I'm feeling hurt.... by my hopes. 

Two months. I had a lot of hope wrapped in those two summer months.

Most people would think two months sounds like an incredibly long time to rest, build strength, and get better. Sitting here in bed tonight, I'm exhausted, overwhelmed with pain, and reflecting on the week. That doesn't make for a very good combination. I feel like this summer was a joke or even a bad prank. I don't even have students yet and I'm barely fighting my way through the work days. I should be so much better than this. After all the effort, the medicine, the labwork and tests, the days at National Jewish, the intense focus on nothing but getting stronger and healthier, I should be, well, "stronger & healthier". Much stronger & healthier. I shouldn't be fighting back tears in a meeting because of the radiating pain shooting through my legs and arms. I shouldn't be so exhausted that I feel like my body will crumble. I shouldn't feel the overwhelming need, yes NEED to lie to people when they ask how I'm feeling. I should be strong and healthy enough to get through a day without wondering how it's going to happen.

So no, I'd have to say that I'm realizing honesty might not be the best policy for me. I don't feel better when I'm open and honest about how I'm doing. I don't feel relief when I admit the pain I'm experiencing. I don't feel better when I tell about my latest test or lab results. I feel like a burden. I feel like a failure. I feel whiny. I feel weak. I feel lazy. I feel incompetent. I feel like a disappointment. I feel annoying. I feel alone.

I hope one day I'll know what it's like to be well. I truly believe those days are around the corner. I believe it WILL happen. Today though, I'm hurting. I'm feeling defeated by my body. I'm struggling to see how I'll even make it through Monday, much less make it through all of next week. I'm struggling to envision how I will make it through Project Baby Rambo. How will I make it through another year if I'm part of the 50% in the clinical trial that doesn't get the IL5 treatment?

How can I pick up the pieces of myself, stand up, smile, and do what I need to do? Pain is so destructive. I pray that I can focus on my faith in the Grace of God and push through. I pray that this pain is a flare and it will ease soon. I pray for stronger and healthier days in which it will be easy to be honest.

working on perception

So much of life is impacted by perception. I've always heard that negativity breeds more negativity. Well, on the flip side, it must be true that positivity breeds more positivity ~ right?

Yesterday, my body scared me. I was sitting and when I tried to get up my legs simply didn't work. It's hard to explain. From the hips down my legs felt numb and weak at the same time. After several minutes there was a deep aching throughout both legs. It was intense and unfamiliar. I felt helpless and confused. It happened again in one leg a few hours later.

Today I had an appointment with Dr. Round, my neurologist. I'm so thankful for my wonderful doctors. He is so knowledgeable and caring. He explained that the "episode" with my legs along with the pain I've continued to have in my bones and joints is neuropathy. He believes the symptoms are worsening because the Churg Strauss is progressing. The unfortunate news is that there is nothing I can take to make it better right now. He has high hopes that the IL5 treatment will be the key to slowing the disease and stopping the pain. It doesn't help me much now, but at least it's something to look forward to. For now, he increased my Keppra dosage in hopes it will alleviate some of the pain and other neurological problems. He certainly didn't give me good news today, but he provided solid information which is always good. 

He also gave me powerful advice. Until I am able to start the IL5, he said the best thing I can do for my body is to rest. A lot. As much as possible. It sounds so simple. The problem is that in my mind, rest = lazy. It sounds crazy, but that is ingrained in me. When I rest, no matter how terrible I feel, my mind overflows with all the "things" I feel like I should be doing. Lee has helped me immensely in this area, but it is still such a struggle. Even now, I am hearing Dr. Round's voice in my head, "The only way you will get through teaching, IVF, & getting into the IL5 study is by taking serious time to let your body rest. Your body is fighting against itself constantly. You need to give it a break and understand that you aren't like everyone else." How odd is it that I feel like he told me I need to climb Mt. Everest? I am thankful there is something I can do to help me make it through these challenges. I am uneasy about what I'll have to let go of on the way.