What healing journey are you on? How are you feeling? What has been your greatest support during your healing journey? Yeah, lots of questions. Ever since my third TMS treatment, I have been experiencing some serious negative side effects. My third month has been full of emotion - anger and sadness.
“The best fighter is never angry.” ~ Lao Tzu
Three month update is here. To be honest, the last part of this month has been incredibly rough. There has been a lot of anger as time has passed. I am trying to fight for my health and healing, but I would not be honest, if I did not mention that there have been times that I have let the anger consume me. Sometimes it lasts for a few seconds and some for hours at a time. It all depends.
As I mentioned in my second month update, healing is a journey and it is full of ups and downs. This third month has had its fair share of ups and downs. Regardless of the photos and seemingly positive energy that is plastered all over social media, there are more moments that are full of pain, discouraging feelings, and defeat. I am frustrated that I am unable to achieve the goals that I set in the beginning of the year from fall and winter road races to traveling to the east coast to visit family. I am discouraged that scans and doctors are unable to find exactly what happened, and even more, I am saddened that the doctor that played a significant part in my brain injury during the TMS treatments seems unwilling to aggressively find answers.
To put it bluntly, it sucks.
I am trying to fight and focus on the positive, but it is difficult not only when I do not feel like myself, but I can feel and see that adverse effects of the TMS treatments whenever I wake up in the morning, look in the mirror, try to push through exhaustion, or attempt to tackle my normal tasks that were once simple.
If you have ever experienced the above from an injury, mental health struggle, or something else, please know that YOU ARE NOT ALONE. You are not the only one experiencing these feelings. You are not alone in trying to heal from these feelings. PLEASE always know that you can reach out. I truly believe that even though our experiences may be different, we can help each other and support one another through our struggles and our victories.
“No one is useless in this world who lightens the burdens of another.” ~ Charles Dickens
Just like I have shared in my last two posts, here's a list of a few high-level topics about how I feel and how I am healing from the adverse effects of TMS. Most are the same, but I am updating any changes or new information based on this third month with stars (**).
Symptoms:
Headache - Pain ranges from a cobra-like squeeze around the head to a kettlebell being pressed on top of my head. I still experience the left hemisphere pain eerily similar to TMS session pain. Feel severe stabbing at the dorsolateral cortex.
Cognitive Difficulties - I still feel like Scrabble letters are scattered in my brain and I can't form the right word or even make coherent sentences. Thinking leads to intense pain.
** Sensitivity to Light - I met with an Occupational Therapist who evaluated my eyes, and thus cranial nerves. She determined that I have sensitivity to lights based on the reaction of my pupils. She also noted that I did not test well for convergence and accumulation.
Irritability to Sound - I have started to wear Loops to help block out the sounds that aggravate or overstimulate my head. For example, I am more aware of the idling of our car and it increases my head pain and also loud shrill barks are not as welcomed anymore.
** Exhaustion - While month two, I tried to reduce my napping time, this last month I was unable to function without 2-4 hours of napping a day and I felt extreme fatigue once more.
Body Aches - I still wake up with flu-like symptoms and this usually reoccurs once or twice a week and lasts one to two days at a time.
Very Emotional - I cry at everything from a dropped mug to a sensitive topic and everything in-between. I feel the urge so often that I usually bite the inside of my lip to avoid the waterworks, especially when around friends or strangers.
** Minor Loss of Balance and Coordination - This worsens as my headache spikes in pain. I noticed that during one of my PT assessments that I was relying on my right leg to firmly balance my body and not fall (or fail the test). Basically, I unknowingly cheated to keep myself upright.
Neck and Mid-back Pain - My neck and mid-back pain has worsened since the first month. I have days where I can't turn my head or move for the fear of my neck snapping, or at least feeling as though it is going to snap in half.
Tests:
CT Scan - Inconclusive.
4-view X-ray - Showed that my cervical spine is straightening due to neck and back muscle tension from the headaches.
MRI both with and without contrast - Nothing found
** MRA - There were a few hypoplastic blood vessels on the left side. Other than that, the blood flow appeared normal. I still have yet to review with my PA.
Neurology - Referred by TMS provider. Passed her neurology exam. Suggested it was either an overstimulated nerve or blood vessel from TMS treatment. She prescribed indomethacin for inflammation.
Out-of-Pocket Neurology - scheduled appointment for first November 20 (update TBD)
Neurology - Referred by primary care doctor (PCM) and scheduled appointment for first available October 23rd (update TBD)
** Physical Therapy - She was able to assess balance, coordination and other tests. During this PT assessment, I was relying on my right leg to firmly balance my body and not fall (or fail the test). Basically, I unknowingly cheated to keep myself upright. She also noted that my shoulders rounded inward, so she provided exercises to help counter. She also referred me to an occupational therapist as well as another co-worker who is known to "figure out all of the harder cases".
** Occupational PT - evaluated my eyes, and thus cranial nerves. She determined that I have sensitivity to lights based on the reaction of my pupils. She also noted that I did not test well for convergence and accumulation.
** PT Co-Worker Referral - scheduled October 4th (update TBD)
Treatments: Most of the treatments are the same as the first and second month.
** New: Hyperbaric Oxygen Therapy - please stay tuned for an update focused on this treatment specifically
** New: PT neck and shoulder stretches and strengthening work
** New: OT eye exercises for convergence and accumulation
Acupuncture and UMAC craniosacral therapist
Yoga - slow and meditative focus
Healthy brain foods - walnuts, avocados, coconut, lots of water
Ice and heat administered for head, neck and back - Migraine head wrap for the freezer or microwave and HealthyLine TAO-Mat InfraMat Pro for stone and infrared heat healing
Homeopathic Borion Medication - arnica, Paris quadrifolia, Kali phosphoricum
Tea - mint, turmeric
Aromatherapy and Essential Oils - I use a lavender and peppermint headache stick and often smell like candy cane
Tinctures - Valerian, Brain and Memory (gotu kola, ginko leaf, skullcap, sage and rosemary)
Vitamins - increasing my iron and magnesium intake
Digestive Health Focus - Pre/probiotics, lots of berries, digestive enzymes
Water and electrolytes
What Increases My Head Pain:
Sunlight - I usually enjoy sunshine, but standing in the direct sun causes left hemisphere pain eerily similar to TMS session pain
Lack of Sleep or Too Much Sleep - Lately I have been waking up feeling as though I am not getting a full night's rest and my body feels as though a Mack truck has slammed into it.
Loud Noises - I am very sensitive and reactive to loud noises
** Light Sensitivity - While I didn't notice as much light sensitivity as my blue-eyed husband, my OT noted that my pupils changed to direct light and now, I am more hyper aware that I shy away from bright lights or my head pain increases - I just realized I "sucked it up" more.
HR > 140 - Now that I am trying to track my heart rate consistently, I have noticed that, even with walking, when my heart rate spikes, I am usually experiencing a severe level of head pain.
Poor Air Quality
3-Month Update - What's Different?
As I have mentioned above, we have spent A LOT of time focused on my healing, and a lot of that time is also spent in the car. We have driven to and from doctor offices for appointments and scans, we have driven to and from Seattle for a specialist, and we have driven to and from different healing therapies. Here's the three-month breakdown of our time in the car!
Total Time Driving:
Doctor Follow-ups: 10 Hours
Specialty Scans (CT, X-Ray, MRI): 14 Hours
Seattle for UMAC and Accupunture: 35 Hours
Physical and Occupational Therapy: 6 Hours
Total Car Time: 65 Hours
Total Time in Appointments: 44 Hours
Total: 109 Hours
Now, let's break that down a bit further. First off, this time calculation does not include the amount of time that my husband and I spend focused on TMS whether that's making appointments and phone calls to ensure referrals have been sent and received or talking about next steps with each other. Additionally, it is almost IMPOSSIBLE to get appointments with specialty doctor's sooner than 6-8 weeks, so A LOT of my appointments have been booked for awhile and just now around the corner. Basically, July and August were a bit more chill appointment-wise as those months were focused on booking and trying to get in to see doctor's and now, September and October are appointment heavy, which is all the phone calls and hard work paying off. But even still, it's important to see just how time consuming healing can be.
So, the first appointment that I had after my third and last TMS treatment (July 1st) was visiting the ER on July 9th as a result of my constant head pain, extreme fatigue and other adverse symptoms that had not subsided since July 1st. It has ben 84 days (July 9 - October 2) or 12 weeks since I sought experienced help to figure out what happened during my TMS treatments. Converting the 84 days into hours, the total time since July 9th is 2,016 Hours or 1,344 Waking Hours (assuming sleep is only 8 hours).
During these 12 weeks,
The average person works 8 hours/day, five days a week which is 480 Hours or 24%.
The average person commutes 27.6 minutes each way, which is about 55 Hours or 2.7%.
The average person sleeps 8 hours/day which is 672 Hours or 33.3%.
According to the Bureau of Labor Statistics, the average person spends 5 Hours and 40 Minutes eating during the week and 2 Hours and 34 Minutes eating during the weekend, which is 98 Hours and 48 Minutes or 5%.
According to the American Time Survey, the average person spends about 5 Hours and 15 Minutes cleaning and tending to household chores a day, which is 441 Hours or 22%.
The average person has about 2.5 - 5 hours of "free-time" during the day, which is 210 - 420 Hours. Based on the hours left, for this 3-month scenario, there is about 269 Hours or 13%.
The amount of time that I have spent at appointments and traveling to appointments is 109 Hours, which is about 5.4% of the total time available during 12 weeks. For the average person, that is about the amount time spent eating or the twice the amount of time they spend commuting. Or, that is about half the amount of free time the average person has available.
As I have already stated, what's not included is the amount of phone calls and time that is spent organizing the calendar to make these appointments happen, filling out forms to accurately document my symptoms to new providers, etc. which could easily be 5 hours per week. But I can tell you, that 5.4% of time these past twelve months has been felt by missing out on friend-time and just spending quality time with my husband and not feeling consumed by TMS.
While the last two month updates share a daily breakout of my healing journey, for this post I plan to share what I have done to feel supported during my healing and what I have done to focus on life outside of TMS. I chose to focus on these two topics this time around because while I feel the daily updates are important to show just how varied healing can be, I also believe in highlighting the importance of balance. Our minds our often consumed by the tasks at-hand and can get stuck in the overwhelming feeling and slow-pace of healing. In order to fully heal, we also need to give our minds a break from the constant worries, to-do lists, and attention on our symptoms and give it the time and space to live in the present and away from the reminder of what we are healing from.
How to Feel Supported While Healing:
Focus on the Positives BUT Give Time to Our Feelings - Like I mentioned, it has been tough this month. I have felt down more than I have felt positive, but during these times it's important to 1. FEEL WHAT WE FEEL and then, 2. FOCUS ON POSITIVITY. I do not think that it is healthy to brush our feelings aside just to try and be more positive. I think it is important to honor how we feel - give it the time and the space that we need - and then, once we allow those feelings to be processed, to focus on something bright and cheerful. One afternoon I made myself a cup of vegan hot chocolate and loaded it up with vanilla marshmallows. I sat down on our bed and had a moment of frustration and sadness, and then, I focused on my delicious hot chocolate and curling up with our two dogs. It is exactly what I needed to feel, process, and move on. I felt supported by being allowed to feel my feelings and supported to know that those feelings don't make my whole reality.
Listen to Those Who Believe You - Again, feeling down is tough, so listen to those who support you and believe you. They aren't in your corner because they are related to you, you married them, or they are your friends. They are in your corner because your healing effects them too. They want to see you succeed and they want to see you get better. Because my husband is in my corner and is often my cheerleader, I often don't give him enough credit when he tells me what I need to hear because I want to see it on a scan or hear it from a doctor. The reality is that those things won't make my experience any more valid, and I need to stop the negative voices in my head and listen to those around me. Once I heeded my own advice, I felt heard. I felt supported. So, stop and listen to those around you and those that have your best interests at heart.
Ask for Help - If you want to feel the most support, take a moment to look at everything on your plate - all the doctor appointments, the prescribed treatment plans, the coordination efforts, etc - and ask for help. Ask someone close to you to join you on an appointment or two. Ask for an accountability buddy. Or, just ask someone to check-in on you consistently. Asking does not mean that they don't care about you - it only communicates to them exactly what you need and how can they can help. Mind reading is NOT a thing. My husband has joined me for a quarter of my appointments, has driven me to Seattle every other week, and has helped in coordinating some of my appointments when I was unable. It has helped me feel supported and taken some of the stress away. Let someone fill this role for you.
How to Focus on Life Outside of Healing:
Get Outside - I try to walk the dogs every day and that is the time that I get outside, but I have found that that is not enough. Because we usually walk the same three routes every week, it is nice to get outside in a different way. When my husband and I stay up in Seattle, I am often searching for something fun to see or a different hike that all four of us can complete. Nature is the best medicine.
Plan a Fun Family Adventure - This has not always been the most stress-free endeavor, but I have made it a mission to do something fun each weekend to soak up an experience that is not TMS-related. I have managed to plan a few flops that have been insanely frustrating, but I have also made the best of it and moved to plan B. Whatever you are able to do with your strength, energy, and focus, do something fun. It's fall, so go to a pumpkin patch, pick apples, or go to a donut shop with fall-flavored baed goods. I guarantee the boost in your mood will elevate your healing!
Do Something Artistic - My husband and I used to spend hours of our free-time working on art together. He would wood burn while I spent time drawing. We have both craved the artistic outlet, but realize that free-time is not always on our side, so we have tried to think of more creative ways to spend engaging our artistic side.
Celebrate the Day - Regardless of how you felt for most of the day or what you did and did not do, at the end of the day state three things that made you smile or what you are thankful for. This exercise has helped focus on more than just my healing and some of its disappointments and setbacks. At the end of the day, I can be thankful for being alive and relishing the joys that come with being human and living this life - I realize that I can sneak in a few more joys than just doctor appointments.
Takeaway from my Third Month of Healing: Healing is a LONG journey. There are many twists and turns throughout the journey. It's okay that sometimes it feels as though there are more rough patches than positive moments. It's okay to feel aggravated and frustrated. It's also okay to allow those feelings to have their space and then to focus on something else that brings you joy.
If you are interested in continuing to follow along on my journey to heal from TMS, please keep an eye out on my blog as I plan to post more updates as I can. Thank you for following along thus far.
All my light. All my love. Namaste.
Jordan
My Gear:
Comments