The Bedrest Chronicles

A Photo Series About One CSF Leak Patient's Experience

Today the nurse practitioner who runs my neurologist's infusion center is concerned that I've developed an additional headache disorder.  So far, all treatments have been ineffective at controlling pain.

After a 3rd stressful trip to the ER last night, because my pain had my blood pressure up at 167/115 and I couldn’t keep down food/water, my doctor’s office has come up with a plan to get to the bottom of this!
I’ll be having scans today or tomorrow and we should have a procedure scheduled by the end of the week.
Thank y’all for your support, prayers, well-wishes,and of course the incredible healing power of Gunner snuggles. ❤️

It's been a few more days.  Neurology decided that my case should be transferred to pain management, so they will not be attempting a patch.  The bedrest is seriously starting to get to me, but at least my husband still has a sense of humor about the whole situation.

When you get reminded the hard way why you’re supposed to keep your bathroom clean by spending an hour on the floor there. 🤢

Today’s update is more positive - My doctor came up with a medication cocktail that kept me off my bathroom floor all day! Still can’t get out of bed, but I did manage to eat!
We will learn more about what is going on with me on Friday morning. Thanks for your continued prayers for my healing!

⭐️UPDATE⭐️
I am excited to share a snippet of today’s progress with you all.
My doctor added a new medication for the SEVERE pain I’ve been fighting, a new medication for nausea, and steroids to help reduce the headache and speed natural healing/clotting is spine. Next week they will be doing trigger point injections and nerve blocks, and I will be getting MRIs to get a picture of what’s going on. I was so thankful I cried. ❤️🥺
Bedrest will be continuing for a little while longer, but I’m feeling hopeful that we will find answers!

This spinal headache is no joke. 😔 Since my doctor added 3 new round the clock medications, it has been so hard to keep track of everything... especially when it feels like your brain is on fire.
PRO TIP- To help make things easier, I like to set 🚨 alarms 🚨 for all of my new medications.
This will be my new reality until my physicians are able to find my CSF leak and patch it. 💜 Here’s to hoping we have answers early next week so I can sleep for more than a couple hours without an alarm going off.

🤞🏻 I had a new MRI done today to hopefully find my CSF Leak 🤞🏻

I strive for authenticity on this account. As much as I can, I try to share my journey with you, but it has been difficult lately. It’s been a challenge to keep sharing through the tears.
I’m so grateful for all of your support during this challenging time navigating a new diagnosis
We learned today that it may not be a CSF leak as we thought. They’ve expanded potential diagnoses to include iih and chiari.
For now, I am still stuck on bedrest, I’m also waiting for a referral to a neurosurgeon to learn about our next steps. 😣
Your continued thoughts and prayers are so appreciated. ❤️

Most days, I am thankful that my medical team makes sure that I have access to the medication I need, but on days like today I am also aware that my health is a precarious balance of medications, diet, exercise, sleep, alternative therapies, and self care . Sometimes, it can be just plain overwhelming.
How do you balance wellness when you’re fighting chronic illness?

Bedrest Log- Day 26:
I’m thankful there is only one more day between me and my consult with the neurosurgeon at UTSW. 🙏🏻
In all honesty ... I am sooooooooo anxious ... like.... I’m not sure I have words to express the overwhelming feelings tied to tomorrow’s appointment... because... What if, after a month of agonizing pain, hitting 9s on the pain scale every day, nothing shows up as a fixable issue on an MRI? What if the doctor says that the test results don’t show anything? Or that there is nothing they can do? 🥺

*inhale.... *exhale....

I wish there was a magic wand I could wave and - “poof!” - fix it!
BUT
There isn’t one... so, for now, all I can do is my best to breathe and have faith.

Aubrey & I are so grateful for your continued thoughts and prayers as we search for answers. 🙏🏻
Hopefully we will have a diagnosis and a plan after the appointment tomorrow.

I'm exhausted from the day, but I wanted to update everyone. I got my diagnosis today of CSF Leak from the neurosurgeon, we came up with a treatment plan , and hopefully I will be starting my healing journey soon. 🙏🏻💜 For now, I am still on bedrest , but we hope that will change soon.

Bedrest log- day 28:
I don’t really believe in coincidences. I believe that this CSF leak came at this time so that I could speak out about the treatments and pain management during pain awareness month. 💜 I am thankful that my neurosurgeon and pain management doctors are working together to create and administer my pain plan! My first in a series of three blood patches is now scheduled for next Tuesday. Although my upright MRI appeared to show a chiari malformation , my neurosurgeon believes that is just because of the severity of my CSF Leak. Your continued prayers for healing are appreciated as I continue this journey.

My CSF Leak Symptoms Include(but are not limited to): 

-Fainting

-Chronic Deydration

-Dizziness

-Trouble Walking

-Incontinence

-Double Vision & Blurred Vision

-Positional Headache

-Seizures

🤞🏻 ...all checked in and waiting on my first blood patch... 🤞🏻

As pain awareness month continues, I will share my health journey from diagnosis to treatment of my CSF leak in the hope that the next person feels empowered to advocate for themselves! 💜A bit of my story with CSF leak - My first symptom was a positional headache that started a LONG time ago, but it was written off due to my history of migraine. Eventually, my symptoms progressed beyond just my positional headache, that would clobber me faster and faster each day... until it would hit the second I was upright. Next, I would get tremors, then eventually absent seizures, then difficulty walking. None of my treatments would help for more than a few hours, and my csf continued to slowly leak until I ended up with brainstem compression. Now all my pain management doctor and neurosurgeon can only play catch up while I get a series of blood patch es to try to help me heal, and to learn what symptoms may be permanent. 💜 I encourage you to advocate for yourself when you know something is wrong! I wish I had stood up for myself sooner! 💜

Time to get real. Today I’ve cried a lot... the overwhelming pain of a CSF leak is not something I would wish on my worst enemy. I broke down. I’m not okay at all
.... BUT ....
Tomorrow is a new day, so I’ll pick everything back up then.

As pain awareness month continues, I will continue to recognize and speak out about the deep connection between my chronic pain and my emotional health. 💕 Sometimes I need a good cry to help me process, honor, and heal my emotional health. That being said, friends, family and other care givers must stop utilizing toxic positivity so that a person’s journey to health includes honoring their mental health because mental health matters!
Here are some affirming responses to reach for when someone you love is crying instead of saying “it will be okay”.

If you’re a chronic pain patient in search of support, pop over to US Pain Foundation today or visit mypainplan.org to create your "My Pain Plan" that is customized to you.

Finally, please know that you’re not alone. If you need immediate mental health crisis assistance and are in the US, you can call 211 or 1-800-273-8255.

I’ve spend a lot of time since my new diagnosis and the beginning of Pain Awareness Month sharing authentically about pain’s impact on everyday life. Today is a high pain day for me.... well... honestly, these past few days have been high pain days. 😔 As day 50 of bedrest because of my CSF leak came and went, I was filled with frustration, hopelessness, and fear.
My neurosurgeon believes, based on the swelling in my brain and the base of my spine, that my CSF leak had been happening for a long time before I received my diagnosis, probably years.  Throughout my diagnosis journey, I begged 12 healthcare providers to find out what was happening to me, and somehow, all of them missed it. 😔 Now, I am left to get treatment while I also process the emotional toll of this on my mental health.
We are hopeful that my second blood patch will be healing for me, but in the meantime, all I can go is continue to process my grief one conversation, prayer, meditation, and post at a time.

Not that I am surprised, but I am disappointed that I'm back in urgent care again.  Praying for even a little bit of relief this time.

My second of three blind blood patches is today.  Hopefully this one works and that will end my CSF leak journey.
Fingers Crossed

Dysautonomia Reality - “You’re too complex”

So many of us hear these phrases as we are searching for our diagnosis. My hope is, that by participating and sharing during Dysautonomia Awareness Month, the next patient won’t have to search for their diagnosis. 🙏🏻

Turns out, CSF leaks can cause dysautonomia that is resistant to treatment.

So thankful that my doc is presenting my case tomorrow!  
We are hopeful that the incredible minds at UTSW can find a fix for this CSF leak.

I am sending this request out there like a friggin SOS. I need your prayers/good vibes/etc. today. After grand rounds, my insurance has decided that I no longer need pain medications despite still having an active CSF leak and chiari malformation.
🤦🏼‍♀️ 😭💔
Making things more complicated, I cannot take OTC NSAIDs because I have a clotting issue.
This afternoon is my first day in a little over 2 months with no help and every time I stand, I am in tears. 🥺 Nobody deserves this. 😭

Grand Rounds didn’t go as we had hoped, but for now we have a new plan and a date for my third blood patch. Your thoughts/prayers/etc are appreciated during this difficult time.

🙏🏻 Following a new protocol to try to make this blood patch sticks! 🙏🏻

I was making dinner when all of the sudden, I couldn't see.  I called my doctor who told me to go straight to the hospital.  As soon as I arrived, staff were rushing to my side.  
Everyone was afraid I'm having a stroke.
Following stroke protocols, I was given blood thinners, given a STAT CT scan, and admitted to the local hospital for my safety.

🙌🏼 No Signs Of A Stroke 🎉

Today is International Day of People with Disability and this year they are highlighting invisible disabilities. 💕
As a person with multiple disabilities, this day means an opportunity for sharing and educating family, friends, community, and country about the experience of people with disabilities. Living in a world that is not set up for you to succeed in is honestly exhausting. However, the challenges of COVID 19 has showed the world that accommodating people with disabilities is not only possible, it is completely feasible! 
And in the wise words of Sonya Renee Taylor 
"We will not go back to normal. Normal never was. Our pre-Corona existence was not normal other than we normalized ... [it]. We should not long to return, my friends. We are being given the opportunity to stitch a new garment. One that fits all of humanity and nature.”

💜 Christmas looked a little different this year.  💜
I had to spent most of the time laying down. I had to drink a lot of caffeine.  However, at the end of the day, spending time with family was worth the increase in pain levels.

🙏🏻 I never dreamed I would be in the hospital for New Years Eve, but I am so thankful for the amazing medical team who have helped with my treatment and hopefully my healing. 🙌🏻

Quick Update for Everyone-
This latest hospital admission and patch has been a HUGE blessing! I still have SO MUCH fatigue, but all day my pain has stayed below a 6/10!

Yesterday was my 160th day on bedrest.
It has been an incredible and exhausting journey to get here and see a doctor who specializes in CSF leak/Spontaneous Intracranial Hypotension. We hope to be scheduled for a targeted fibrin patch to finally patch this darn CSF leak. 🙏🏻💜
*these numbers are reflective of days on bedrest, not days of having the CSF leak.

I wanted to share on Friday that I got my fibrin patch scheduled... but hormonal migraine had other plans for me.
I spent a day back in my doctors urgent care infusion center. Now I am back at home and focused on recovering, resting, and healing. We are hopeful the fibrin patches will lower pain levels and help me have better quality of life. 

This week has been an overwhelming time during which my CSF leak symptoms have begun escalating again.
We knew that my blood patch was failing, but we weren’t prepared for the return of many completely debilitating symptoms. 😔
As much as I strive for #authenticity and sharing in real time, I’ve had to step back. We have alerted my doctors to the changing symptoms, so we hope to know more next week. In the mean time, your thoughts and prayers, good vibes, whatever you can throw into the universe for me, is greatly appreciated. I’m hoping to hold on until my scheduled fibrin patch on Feb 25th.
💜 I’m so thankful for you all. 💜

Check on your friends with migraine this week... with these weather systems moving in, we’re not okay.
Thanks Cathy for this great Bitmoji find!

1 Year - 365 Days - 525,600 Minutes
Since I entered quarantine ... within 6 weeks, you were all there with me.
I was waiting for a heart procedure. On March 23rd, 2020, I was the last patient my doctor saw before the hospital cancelled all “elective procedures”.
A year later is so much longer than I ever imagined this quarantine would be. However, I’m blessed to be able to stay home, get most of the care I need, and stay safe ... and I am doubly blessed to not have lost anyone to this terrible virus.
I had so much I wanted to share this week about being accepted to advocate for the migraine community at Headache on the Hill 2021 with Aubrey & Gunner the Service Dog... but severe pain has kept me in bed and off my phone for almost 5 days now.
I have 13 days left before my next procedure. I hope and pray that going back on strict bedrest allows make it to my procedure date, that the procedure doesn’t get cancelled because of COVID19 or the crazy cold weather, and that I am feeling better once it is time to meet with representatives for this year’s digital Headache on the Hill on March 23rd, 2021.

Snow or not, it is still caregiver appreciation month!  Let me tell you, I’m lucky!  Aubrey is an amazing partner in care!  I’m so thankful that he takes care of me when I need it and let’s me “do it myself” when I need that.  He honors our wedding vows every day!

Yesterday was my 200th day on bedrest. When this started, I never expected to be loosing a year of my life, but after meeting with a CSF Leak Specialist, I have learned that it will be at least one year before I complete my first round of treatment and we find out if that was enough.

... the procedure didn't go well...

It is always tough to spend the day at the doctor’s for a migraine attack, but it is even more difficult after 210 days of bedrest because of a CSF leak.

A couple weeks ago, I published a new blog post about my journey to my CSF leak diagnosis ... but when everything that could go wrong went wrong during my procedure, sharing it was the last thing on my mind.
I hope to continue this story as I am continuing my journey to seal my leak. After 3 blind epidural blood patches, a targeted multilevel epidural blood patch and a fibrin patch without epidural blood patching, I am still believed to be leaking csf from as many as 10 places on my spine. I don’t really know how to talk about all of those experiences, but for now, this is my csf leak diagnosis story.

https://www.thetechnicolorzebra.com/the-technicolor-zebra-blog/drowning-doesnt-only-happen-in-the-water

I cannot begin to express how painful and heartbreaking these past couple weeks have been, but I'm still here and I refuse to sink! ❤️ I am so thankful for all of the amazing doctors, friends, and family who have helped me to navigate these rough waters. After my fibrin patch, I was not sure that I had enough strength to keep in the fight for my life, but I am blessed beyond measure that others have put on their gloves and got into the arena with me. ❤️

It has been 228 days of bedrest, so I wanted to share an update after today’s pain management appointment. I am so thankful for to have such an amazing and understanding doctor on my care team. 

In today’s update, we had to address the reality that another doctor has given up on treating me, so I’m back in limbo again on my search to find a new team to get my CSF leak repaired. 😞 

It’s been hard to process the heartbreak of losing one doctor after another. In some ways, that makes me even more thankful that my pain management doctor has promised to never give up on me.

It has been 250 long days on bedrest.  

Trying to wait patiently for my next blood patch, but each passing day gets harder and harder.  I'm fighting hormones that are getting further out of wack, and I know that next will be the return of my seizures.  I'm praying that doesn't happen before my next patch

...

but at this rate, I have my doubts.

I haven't had many opportunities to see friends and loved ones.  I've struggled to exist.  I am hoping and praying that another doctor takes my case soon so that I can find the surface of this tumultuous water, and start heading to the surface to find happiness and life again before I drown.

As we look for a new pathway forward, you’re thoughts and prayers are appreciated.

Please know that if you’re in a mental health crisis and in need of immediate assistance in the US, you can 

text HOME to 741741 or call 1-800-273-8255 

any time day or night for help! 🙌🏻