Never lose hope

So it has been several months since my last blog post and a lot has occurred during that time period; I am no longer working 2 jobs and doing okay health wise.  I am headed to Switzerland in two weeks for a month for immune boosting treatment.  I was recently diagnosed with gastroparesis after throwing up for several months.  Now let me tell you, just how I got here.

At the end of July, I suffered my third concussion of the year and I was diagnosed with viral meningitis, which my LLMD doctor believed to be caused from a coinfection I suffer from.  I was hospitalized for almost two weeks with the meningitis and had to learn to re-walk after having a lumbar puncture and a blood patch.  A blood patch puts your own blood back into the hole where the fluids were taken.  After the blood patch I physically could not walk and had to regain my strength.  I had to do occupational therapy and physical therapy.  The meningitis was a major setback for my health; I had to restart IV antibiotic therapy.  I still have not recovered over 7 months later.

I started grad school for my Master’s in social work at the end of August but by mid October I was so sick that I was harming my body by continuing with my education so I took medical leave.  I was throwing up every day and physically struggling at my internship at an inner city middle school.  I didn’t have the energy to complete a day.  While I was still in school I had to get my port replaced.  My portacath stopped working so I had to get a new one placed on the opposite side.

After I took medical leave from grad school, I attended homecoming at James Madison University.  ESPN had chosen JMU to be their college game day team.  I had a great weekend with my senior year roommates.  It was nice to be back in Harrisonburg.  I had missed it.  I had missed a nice Jackbrown’s burger.  And my best friends of course.  Laughing is one of the best therapies. 

 

Reunited and it feels so good! 

On the quad watching all of the mayhem

After my trip to JMU, I traveled up to New York for one of my closest friend’s 24^th birthday which happened to be Halloween weekend.  I had bought a Dorothy costume but the zipper was broken, that’s what you get for buying it at a thrift store.  So instead I was a beautiful butterfly.  

Since my meningitis episode I have done 7 additional months of IV antibiotics.  Remember I have already completed 16 months of IV treatment, now I have completed 23 months of IV treatment.  I have done various combinations of merrem, clindamycin, azithromycin, cipro, tigecycline, and daptomycin.   Originally I had attributed the constant nausea to all of the IV medication.

This year I attended Thanksgiving and Christmas at my grandparent’s house which hasn’t occurred in years.  I was really happy to be able to be there and spend the holiday with my family.  This year I started to realize just how sick I am and I am scared of the amount of time I have left on earth.  I have started reflecting more, attending more family events, and trying to be more present.

Erlemeier family Christmas 2015

Payton and I Christmas 2015

 

End of the year dinner with my grandma

After Thanksgiving I had a few friends visit me.  One I had never met but had been talking to online for several months.  She stayed with my family and I before her LLMD appointment.  It was so cool to meet her in person.  We ended up going to Shake Shack and even going to see the lights on 34^th street. 

After Christmas I got a text from my best friend’s Mom about going to California for New Year’s Eve.  That trip rejuvenated me.  I can’t tell you enough just how much seeing my best friend jump started me for the month of January.  I had a great New Year’s Eve with my friend and her family.  I also think the heat did me some good.

Santa Monica Pier

                                                 

 

Celebrating the New Year right

Hiking the Bump and Grind

Power Pose

It wasn’t until the end of January that my nausea got even worse, just when I thought it couldn’t get any worse.  My sister turned 21 in January and I felt as though I wasn’t present at her birthday dinner.  As my symptoms progressed I was losing sight of the end of Lyme treatment.  In February I was officially diagnosed with gastroparesis and SIBO (small intestinal bacterial overgrowth).  I spent 8 days in the hospital at the beginning of February where I ate radioactive eggs for a gastric emptying study to diagnose the gastroparesis.   This new diagnosis has caused me severe weight loss and loss of appetite.  I also had an endoscopy and colonoscopy while I was in the hospital and they noted inflammation in my esophagus which they diagnosed me with esophagitis.  Also I have regressed physically from being so weak.  I have lost over 50 pounds.  Let me just tell you before I had the gastroparesis diagnosis doctors thought I was crazy.  They asked me if I wouldn’t mind talking to a shrink.  Of course I don’t mind but that doesn’t take away my problem.  Then the doctors thought my gastroparesis was anxiety related so they are heavily medicating me in hopes of calming my stomach.  My GI doctor added Protonix, Reglan, Errythromycin, Xifaxan, Lorazapam, Simethicone, and Colace.  I am nervous to take 1mg of Lorazapam multiple times a day.  I think that dose is way too sedating.  After my initial hospital visit I went to the hospital 3 more times for stomach issues.

Radiactive eggs for my Gastric emptying study

 

Hair loss from lack of nutrients

During all of these hospital visits, I was able to get away to Florida to visit my grandparents.  I drove with my cousin (well she drove the whole trip since I am not driving right now)… 15 hour drive and I am so glad I went. I needed the sunlight and time with my cousin.  Meanwhile my parents were searching for alternative treatments.  There is a clinic in Switzerland that offers much more than we can do in the USA due to the FDA.  They offer fecal transplants, brain wave optimization, nutritional IVs, and alternative ways to rid infection such as inducing a fever. Originally when we were acquiring about Switzerland the soonest date available that I could go would be May 9^th; however I just found out on Friday that I will be going April 2^nd.  Don’t worry I will detail my entire trip for you.  

My Mom and I in Florida poolside

 

My cousin Sarah and I getting ready for the pool

A Florida sunrise

My friend Xander

Through all of this misery, I have been blessed with a strong support system of friends.  

One of my closest Lyme friends Jennifer

Nothing like a sleepover with friends

College roommate Meghan and I

I am never too old for slumbys

A new Lyme friend named Jake

My person. Who visited me in the hospital and even offered to wash my hair!

Now you are all caught up on the past 7 months. My hope is that Switzerland can get this grim reaper off my back.

“If you can't fly, run. If you can't run, walk. If you can't walk, crawl. But by all means, keep moving”