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10 Years ago today I got a second chance at life. Some of you know this story and some don’t, but it is part of my life and part of why I am the person I am today.

In March 6th of 2009, I was scheduled for an MRI because of a killer headache that I had experienced the previous weekend, I had no idea what the next months of my life would be like.  

That day I left my job with another killer headache, blurred vision, and literally threw up into a cup for 45 minutes as I drove myself to the hospital where my MRI was scheduled to take place.  The MRI wasn’t scheduled until 4:00 that afternoon, but I walked into the ER at 1:00 knowing that something was not right. I was diagnosed with spinal meningitis that evening, I don’t remember much at all of that time when I was in the local hospital.  I remember lots of yellow gowns and wanting to cover up with tons of blankets, but the nurses kept pulling them off of me because my fever was so high. I would doze on and off and don’t really remember the events leading up to my transfer to St. Mary’s in Rochester, Minnesota.  

What I do remember is the transfer to Rochester.  The ambulance was cold, bumpy, and I felt very alone.  For that ride to Minnesota my headache did subside (I now know it was probably from the help of a whole lot of morphine.) By the time they unloading me and got me to a room the doctors attempted yet another spinal tap while in my hospital room and it was literally the most painful feeling I have ever endured in my life, my head felt like it was exploding, the faintest light made my eyes feel like the were being yanked out by a hand in the back of my head, and even the faintest touch of a hand send pain through my entire body.  That was the night my grandparents visited me. I know, this freaks people out, but on that night I now know just how close I was to leaving this earth. I vividly remember my Grandma Bushbaum standing there with a glass of diet coke with lemon and a fly swatter in her hand.  I vividly remember by Grandpa saying they were just coming by to check on me.  I vividly remember asking to go with them and my Grandpa saying, “No, Jenifire. You have to stay here.” My grandma kissed my forehead and they left.

My next memories fade in and out and include lots of hallways, bright lights that caused intense pain, and lots of vomiting.

I spent the next 4 weeks in and out of hospitals both local and out of state.  I had a 1 year old, my husband had a new job, and I was in the first year of a very demanding job.  

Obviously, I am here typing this post today, so you know the story ended well. It was definitely a long road of many ups and downs, but those weeks changed my life forever!  There were times that I truly did not know if I would get to watch my baby girl grow up and days that my body hurt so badly I wasn’t sure I could keep fighting. I had blood clots in both arms and had gone through more spinal taps than anyone should ever have to endure.

I don’t think I fully realized the “trauma” that my mind and body went through in 2009, but I am often reminded when I have to have a routine blood draw for my Crohn's Disease checks or when I have to lay still for a CT scan or MRI to check my guts.  Even a routine blood draw now causes anxiety to creep in and I literally have to have to go to a different space in my head to prepare for a CT scan. I don’t suffer headaches often, but when I do my mind immediately goes to the thought that this could be it again. (Obviously not every headache is from meningitis, but once you have experienced the feeling it is one you never forget.)

That extremely difficult road I traveled in 2009 didn’t just leave me with anxiety and chronic weakness in my hands.  It left me with a second chance at life. It left me with hope that there is a beautiful place called heaven where our loved ones that have passed are waiting for us.  It left me with a desire to LIVE life to its fullest and never take it for granted. It left me with a desire to leave nothing unsaid, to dream big and huge, and to love every birthday, hug, and event that occurs in my life.

Have you experienced a second chance at life? I am always fascinated by stories of second chances and would love to hear about it.

From the gravel road-

Jen

1

Today is my stelara day!

You have probably heard commercials about stelara on the television.

" If you’re an adult with moderately to severely active Crohn’s disease, your family and friends may not fully comprehend how real it is. But you know how agonizingly real and debilitating the symptoms can feel at times, slipping away for a while, only to sneak back unexpectedly. "   🙂

I think I can recite it in my head I have heard it so many times.

It is used for a few different things, but it has been a pretty big game changer in managing crohn's disease for me. I am very open about my disease because I always think if what I can share with someone might help them manage their symptoms then it is all worth it. There is currently no cure for crohns, just medications to manage the symptoms and you need to have an amazing support system in your back pocket.

I have an amazing support system! My family has provided me so much support in the last few years and this guy has slept more nights on a hospital roll away in the last 18 years than he probably cares to discuss.

I am in my second year of giving myself shots every 8 weeks. Prior to Stelara I had been on several different medications, tried no medications, tried Humira, and then eventually had small bowel resection surgery to remove the diseased part of my small intestine. In 2015, the docs removed part of my small intestine and the ileocecal valve because there were no meds that were working anymore and I was having blockages where the scar tissue and disease was located. (P.S. I have amazing doctors, both here and at the Mayo Clinic) I am actually participating in a study for Mayo Clinic right now. (That will be an entire post some other day.)

After I had my surgery I had a really good 14 months with hardly any problems, but then it didn't take long before Crohn's Disease reared it's ugly head again. Since I had tried many other medications my doctor recommended Stelara. After battling with insurance for awhile I was finally approved. The first dose of Stelara is given via IV infusion, if you have no reactions to the med then after that initial dose you give yourself shots every 8 weeks or more often based on the stage of your disease and your symptoms.

When I had my first treatment I attempted to freak out my family via snapchat filter. They pretty much said, "Nope, you look normal." Brothers!

While this disease has caused me much heartache since the age of 21, I have to admit it has taught me so much and helped me to cross paths with people I would have never met had we not been #crohnssistas or #crohnswarriors There are good days, fantastic days, bad days and well, sh**ty days. 😉 My current status is good, though, and we want to keep it that way.

Do you know anyone with an autoimmune disease? Any encouraging words from those of you that might be in the same boat or have a family member dealing with disease?

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