Thank you for praying for my most recent appointment with the Neurologist. I apologize for this delayed feedback, but, to be honest, I needed to take a few days to sort through things in my head and pray about all of the mixed emotions I am experiencing. I put so much hope into the appointment that the lack of answers left me feeling very discouraged. The good news is, the Doctor didn't see anything serious on my MRIs and the blood that was previously present in my spinal cord is now gone. However, the original Neurologist said it was probably this blood that was causing my headaches and back pain. So, it's frustrating that the pain is not getting significantly better now that the blood is gone.
The Neurologist did say that the description of my headache at its peak, when I had to be hospitalized, is similar to a Thunderclap headache. I had not heard of these, so those of you that haven't either, here is some info from Mayo Clinic:
Thunderclap headaches live up to their name, grabbing your attention like a clap of thunder. The pain of these sudden, severe headaches peaks within 60 seconds and can start fading after an hour. Some thunderclap headaches, however, can last for more than a week. Thunderclap headaches are often a warning sign of potentially life threatening conditions, usually linked to bleeding in and around the brain.
Apparently, most serious issues would show up on specific tests and would be in the folds of my brain. These particular tests were not performed during our initial hospital stay and because so much time has passed and the intensity of the headache has lessened, the doctor does not feel it necessary to perform additional imaging at this time. Although the magnitude of my headache has decreased significantly, I have had an ongoing headache for approximately 10 weeks. Therefore, he has categorized my headache as a primary thunderclap headache, because it has sharp, sudden bursts of pain, but otherwise remains dull on medication. According to the International Headache Society, the presence of a thunderclap headache as a primary disorder is considered rare and should only be concluded if a through workup
has been completed to ensure nothing more serious is going on. This makes me question the diagnosis. He changed my medication, prescribed additional medication and is treating my headache as a migraine. Thankfully, one of the medications that worked well in the hospital is back in stock (after being out from a national shortage), so that has allowed me to sleep better than I have in weeks! Praise the Lord for a good night's rest!
With all that said, the doctor still couldn't tell us what is causing the headache. Blood is an irritant, so he guessed that it may have irritated the nerve endings in my spinal cord, and that is what's causing my headaches. As far as my back, he thinks the pain is from the multiple punctures and trauma that my spine has experienced. At the end of the appointment, we left with more questions than answers, which was disheartening on numerous levels. Although it is slow and steady, I am thankful that healing is happening, I am just ready for the pain to go away and to get off meds!
Today I had an appointment with a physical therapist. We developed a plan for treatment and are going to try some dry needling (similar to acupuncture) in the next few weeks to hopefully relieve some pain. I am also taking a therapeutic yoga class. My range of motion is horrible, but at least I am moving. My teacher read a quote on the first day of class that has stuck with me, "If you are having a hard time seeing the light at the end of the tunnel...walk through the darkness and turn on the light." Just as with Dillon, I know that God is ultimately in control of this situation, but this was a good reminder to think positively, put one foot in front of the other and do what I can to help my body heal.
After Dillon was born and I was on bed rest from the spinal headache, I remember asking my husband, "What do you think the Lord is trying to teach me?" He said, "To Rest." This was before we moved, and we were still in transition and living out of suitcases and on mattresses on the floor of our home. I had been laying there for days, not wanting to think or feel, but knowing deep down that the numbness would eventually fade and I would be forced to meet my emotions face to face. At some point, I would have to talk to God. But it all seemed so overwhelming, so emotionally draining. Instead, I passed the time sleeping, pumping milk for the NICU babies, watching HGTV's Fixer Upper, reading books to my children and playing spider solitaire...mostly mindless activities that kept my mind occupied yet not engaged. At one point after a long day of doing nothing, I looked up at the tray ceiling in the Master Bedroom at a verse the owner had applied years before we moved in, a verse I had read many times before, read, but not actually comprehended, until then. The verse was Matthew 11:28, "Come to me, all who labor and are heavy laden, and I will give you rest." I immediately burst into tears, opened my Bible and started praying.
There has been much that the Lord has been teaching me the past few months and many blog posts that I have wanted to write, but haven't had the time or energy to put words and thoughts together. I have questioned what I should write about and if people would even want to read the scribblings from a Momma's hurting heart. But the reality is, writing for me is therapeutic, even if no one else reads it. It is a place where I can get thoughts and feelings out instead of leaving them bottled up, attempting to choke the life and joy out of me. This blog, is a place of respite.
One thing I have never been is a very patient person and through this health journey, my impatience has been highlighted. I have been forced to slow down. Forced to rest. Even though I have spent much time being still, my mind has been busy thinking, either of Dillon, contemplating life or trying to figure out pain, both emotional and physical, which has left me mentally exhausted and even defeated at times. It is at these times when I am completely depleted that I fall before the Lord, crying out in anguish. Living next to the ocean has been both relaxing and a time of healing for our family. It has been a place where I have screamed out to God amongst the crashing waves and moonlight, as well as a place where I have learned to laugh again while playing with my children, and smile, walking hand in hand with my husband while we search for shark's teeth. One thing I have observed is that grief, like the ocean tides is ever changing. There are moments when I feel stronger in certain areas and other times I can barely break the shoreline before tumbling upon the sand, weary from my struggle with the open sea. Perhaps that is one of the hardest parts of grief and loss....the world keeps moving on. This is of course a blessing and a curse. Each day I am a little further away from the time I felt Dillon's kicks; a little further away from the day I held my sweet son in my arms. In the midst of everyday life, of being a wife and a momma of two active young children, while also trying to balance grief and physical healing, I am utterly aware of my weakness. Perhaps this is another lesson from the Lord...."My grace is sufficient for you, for my power is made perfect in weakness." "Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me." - 2 Corinthians 12:9
One of the songs I have on "Dillon's Playlist" is "Christ in Me" by Jeremy Camp.
Click Here to watch the youTube video.
These lyrics in particular have brought me comfort when I have felt like I have nothing left, like I am completely empty....
So that it's you I breathe
I want my life to be
Only Christ in me
So I will fix my eyes
'Cause you're my source of life
I need the world to see
That it's Christ in me
That it's Christ in me
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