..and sometimes He calms His child."
What a month it has been for me. I have been meaning to blog and update all of my faithful friends on how well I have been doing since starting Remicade one month ago. I appreciate all of the thoughts, prayers, texts, messages, and calls inquiring about my state of health.
I received two doses of Remicade within a 2-week time period at the end of June/first of July. Since it is very similar to chemotherapy, I was pretty well knocked out of commission for the days of treatment and for several days after each dose. I called these first two doses the "double whammy". Each time after treatment, I would spike a fever and experience significant body aches and chills. Similar to the flu, all I wanted to do was to sleep, but getting comfortable enough to do so was a challenge.
Once the fever/aches and chills phase wore off, I was so exhausted that I slept for most of an 18-hour time period. Doing my job was a challenge, but I am fortunate to be able to create my own schedule and was able to see all of my patients both weeks of treatment.
Fast forward exactly one month to July 20th, and I can honestly say that the past couple of weeks has been amazing. I have had plenty of energy and been able to spend lots of precious times with my boys. My life is still ultimate chaos, but I wouldn't have it any other way. I consider myself extremely blessed and surrounded with outstanding people/athletes/friends.
Despite the current update and good news, I remain in a stormy season. After a stressful week, I was reminded last night of just how rapidly my health can deteriorate. Remicade has been known to be "liquid gold" to many patients with Crohn's and now I understand why. I almost forgot how sick I was for a couple of weeks. The occasional bout of nausea after eating or the occasional twinge of abdominal pain have been my only reminders this past two weeks. My joint pain has been significantly reduced, and the fatigue has gotten MUCH better.
However, after a demanding week, I let my mind wander last night, and my thoughts began to overwhelm me: My house was a mess, there are piles of laundry to do, my boys are out of town with their dad this weekend and I missed them like crazy already, but also worry about their safety while they are away. My job is demanding, and while I love each patient, there is lots of outside work that must be done and documented in a timely fashion. My parents left for Ireland yesterday and I worry about their safety. There are numerous other "waves" in my life: I struggle with my future as a single parent. It is not ideal, nor do I believe it is God's plan/design for our lives. I worry that my health will interfere with my ability to work and I will lose my job and house. There are times it feels as though I am all alone despite the many incredible friendships I have in my life.
I have found myself asking over and over WHEN will this storm be calmed? When will the dust settle?? When can I stop treading water and not sink? I've cried out to God to calm my storm so that I might have some rest. When I am tired and worn, I want so badly to be healthy and/or "normal" and able to weather any storm.
This past month my storms seemed to be smaller and the rain came with less frequency. Maybe my "storms" were finally beginning to calm? Maybe things were about to get better and it was about time!!
However, last night, the pressures and stress of day to day living and concerns got the best of me. The old familiar burning knife pain began twisting in my left side. According to the latest CT, this is significant inflammation in the colon. Concerning to me because the original site of inflammation and surgical site, was my ileum (causing pain on the right side). Now we know the Crohn's is also damaging my colon. The job for the Remicade is to stop the inflammation and suppress my body from attacking/destroying itself.
The nausea came hard and hit fast last night. There felt to be a second burning knife in my right lower quadrant. Each time it plunged into my abdomen it felt like bees were stinging me on the inside and clear through to my back. There was a burning sensation that I could not ignore in my upper abdomen. It felt like times in the past when I have had ulcers that were actively oozing. I laid very still in hopes that if I didn't move, I would fall asleep and wake up today feeling decent again.
Hours later, it was clear the pain wasn't going to get better, so it was time for an ER visit that included an IV fluid bolus, Morphine (pain) and Zofran for nausea. Two doses of Morphine later and a bag of saline later, I was feeling well enough to go home and sleep off the rest of the flare.
So today I am pretty much worthless. I had been hoping to spend the morning at a triathlon, racing with my tri family, but of course that didn't happen. I am disappointed to miss yet another activity, but I know that there is SO much more to life than a race.
It's almost like a slap in the face to realize that after two good weeks, the pain is still there. My storm STILL exists. Chances are, I will never escape this storm. Instead I will have to learn how to weather it with dignity and grace. Perhaps I have been praying for the wrong thing here: I wanted God to take my storms and make them sunny days again. I wanted to stop having physical pain that quickly turns into emotional pain when I feel that I have let people down or have been unable to fulfill obligations. I wanted to stop worrying about what will or won't happen in my future because of my illness and its unpredictability.
Watching life pass me by today when I would rather be out doing ANYTHING other than sitting inside staring out the window, is a difficult task at hand. But it is where I am. It is where my storm has brought me. Even on a sunny day, I feel my storm rock me to my core.
What I WANT to realize is this: The outcome of my life and my storms are out of my control. What I CAN do is ask that God calm "His child". That child is ME. I can't control things like my illness or other people's actions that might affect my life. I cannot control what happens to my boys when they are out of my sight, or my parents as they travel. What I can control is myself and my own actions. My prayer today is that I will learn to be calm. Calm, quiet, and patient amidst the storms that may come when least expected. I probably don't even need to "learn" how to be calm. All I really need to do is ACCEPT the calm within when it is clear that my external storms will not be calmed (at least not in MY timing).
Many of us are in a stormy season and are waiting to see if the storm will fade or be calmed. Let's ask ourselves this instead: Have we learned to accept the peace and calm offered to us during the midst of our storms? That peace is there, waiting to be accepted and absorbed. Have we decided to accept it?
Apparently, I haven't! One lesson I have revisited over the past 24 hours is that it is not healthy for me to worry, fear, stress, and fret over the circumstance of my life. Most of these circumstances are silly. Does it matter if the laundry gets done, the dishes put away, or the pet hair vacuumed off of the floor? Will my work still be there tomorrow if I don't finish it all today? Yes! It will. It's not going anywhere! Do people think I am a terrible mother when I get sick and can't take care of my own children? These things may matter, but certainly aren't worth the attention and stress they are demanding from me.
In the midst of it all, may I/we learn to look at the big picture and what is REALLY important in this life. May we learn to adjust our actions/attitudes to accommodate the situation, stress, or "storms" that may surround us.
For if we are to remain calm, focused and peaceful despite our circumstances, there is no doubt that we can live in peaceful existence with any storm that comes our way! If your storm isn't being calmed, learn to accept His calm, His peace in the midst of your challenge. If and when you/WE can fully accept it, perhaps we might even find ourselves saying, "LET IT RAIN!". :)
Marcia
My words/song of comfort for the day:
"All who sail the sea of faith,
Find out before too long
How quickly blue skies can grow dark,
And gentle winds grow strong
Suddenly fear is like white water
Pounding on the soul
Still we sail on knowing
That our Lord is in control.
Sometimes He calms the storm,
With a whispered peace be still
He can settle any storm,
But it doesn't mean He will
Sometimes He holds us close
And lets the wind and waves go wild
Sometimes He calms the storm,
And other times, He calms His child.
He has a reason for each trial
That we pass through in life
And though we're shaken
We cannot be pulled apart from Christ
No matter how the driving rain beats down,
On those who hold to faith,
A heart of trust will always
Be a quiet and peaceful place."
-Kevin Stokes/Tony Wood
