September Is the Month – What You Need to Know

Welcome to Weather in April!

I’m going to guess that you ended up here after seeing some sort of IIH Awareness post on social media. Maybe you’re a patient struggling with this ruthless, debilitating condition. Maybe you’re a caregiver looking for answers for their loved one. Or maybe you’re just curious what on earth it means to have the fluid around your brain increase to unbearably painful levels with no warning or reason whatsoever.

No matter your why, I have something very important to tell you: there is hope!

In January of 2017, I gave birth to an incredible baby boy. Unfortunately, the epidural that I received for his birth caused a spinal fluid leak that ultimately rebounded to my body overproducing spinal fluid, also known as Intracranial Hypertension (or pseudotumor cerebri).

After countless tests, medications, and attempted treatments later (including two brain surgeries), guess what… I still have IIH! Because sadly, there is no cure to this rare, unpredictable condition.

 – Hold on, I’m getting somewhere with this. –

I will never forget the endless days and nights that I writhed in pain, whether in my bed, in the shower, or on the floor of the ER. Unlike many with this condition, I was lucky to at least have a diagnosis (after several months of misdiagnoses), but no treatment was working. Nothing even helped. There were few consistencies and even less answers. Hopeless was all I felt. I thought my suffering would never end, to the point that I even wanted to end it all myself. How could I live a life like this?

 – If any of this sounds all too familiar, then this is why you’re here. Please, keep reading. –

It has been almost 9 years since the day my life was changed forever (obviously for more reasons than just having a baby), and what I want more than anything is to help others who are currently feeling the way I used to feel. I want them to know all the things that I wish I knew then. I want them to hold onto the hope that it can get better. Life is worth it. You are worth it.

After developing IIH, I could no longer work, and I could no longer drive. I lost countless hours and days with my new son and family. We struggled with bills and lost our home due to the financial burden of chronic illness. Side effects from medication wreaked havoc on my body, and I lost an unhealthy amount of weight. My marriage was tested time and time again, and I thought I would never be able to grow our family more like we had always planned.

Today, I want you to know that in the years that followed this horrible medical accident, God restored more than all we had lost.

“So I will restore to you the years that the swarming locust has eaten…”  – Joel 2:25

I know my life is not like what it was before, but in so many ways, it has become far better than I could have ever asked for.

I haven’t been to the ER for IIH in years. I’m no longer being woken up as frequently by excruciating pain in the middle of the night. I’m not taking nearly as much medication as I used to for IIH. We were able to buy our first real home. I have started driving again, and God has blessed us with a second vehicle. I’m no longer in the work field, but I get to be home with my children every day. That’s right, children. Because God has even blessed us with another child!

There was a time that I did not see a future, not with IIH. I can’t go back and tell myself what I know now, but I can tell you. There is hope. God is real, and He saves. He comforts and restores. He delivers, and He heals.

In addition to (hopefully) finding hope on our website, be encouraged to find many other answers to your questions about IIH, managing this condition and your overall health, as well as first hand experiences that will remind you that you are not alone in both what you are going through and what you are feeling.

Being a rare medical case does not mean you are on your own. Together, we will find strength and answers. Together, we will find our cure!