in the hospital....

** I wanted to start off with the background before I talk about where I am now.. which I am still not better but better than I was in August. I work hard at therapy and have been taking videos, I am hoping I will be up to date with my blog sometime this week. Thank you to all who are reading. LET’S RAISE AWARENESS**



Jefferson University Hospital- I was now diagnosed with having Chronic Lyme Meningitis. I had a team of doctors: family medicine doctor, infectious disease doctor, neurologist and rheumatologist. The doctors had me on the antibiotic Rocephin given to me intravenously since I was in the ER. I only had about 5 days of the Doxycycline until they switched me ( I took these pills before I was in the hospital so August 31 was the last day that I took these pills). They told me that the oral meds would not help me because the Lyme was in my spinal fluid and in my brain. They said it crossed over the membrane and that only intravenous medicine would be able to help me.



While in the hospital my arms and legs became more and more numb ( mostly just my right side). It was a cold squeezing feeling. One night I cried hystrically as the nurse tried every pain medicine in the book I feel like. I tried Dilaudid, Oxycodone, Hydrocodone- nothing would work. All that would help is if she was able to rub my arm or my husband rubbed my arm ( he stayed with me most nights <3)The arm rubbing wasn’t really helping the problem but I think it was more of a comfort feeling. Nothing was helping because it was nerve pain. That is when I started Amitriptyline (Elavil) and Gabapentin (Neurotin). Overall I am still having this pain and nothing ever took it all away…I am still on those meds daily. ( I will talk about where I am now after I get my background done)



I also started developing pain in all my joints. My shoulder, elbows, hips, knees, wrists and ankles hurt so bad. I would just take pain meds for everything and ibuprofen (anti-inflammatory). In that first week of the hospital I was just very tired and in so much discomfort/ pain from the numbness. I was continuing to forget things and of course I was scared.. I was in the hospital for a week already and no signs of leaving. The doctors were waiting for blood work and cultures to grow. It was nuts!
This second week is when I feel like it got worse. Every morning they would come in and I would get my Rocephin intravenously, they would take tons of blood, and doctors would give me a check up. They would always try to push down on my legs and for be to push back, same with arms and wrists. It was obvious that I was getting weaker on my right side. On that second Wednesday (September 7) I would say was one of the worst days I had. I was emotional because school was starting and I wanted to be there to greet my class (they had to give me a Xanax because I couldn’t stop crying). It was just a hard day too b/c I was there for a week and I just wanted my life back.



I would try to take walks in the hall throughout the day to move around and get out of my bed. It was getting harder to walk and whoever was with me would walk and hold on to me and I would hold on to the railing. On this same Wednesday, my best friend, Shannon was with me. We were going for a walk around the hospital floor when we saw a man needed to get by. I stopped to let him pass (we had to wait a minute as a nurse was rolling this mans bed down to xrays or wherever) As I am standing there I turned to Shannon saying that my leg was so numb and I can’t feel it on the floor. She said she would help me walk to my room when then my left leg went. A nurse who was close by saw me and grabbed a rolling office chair sat me in it and took me back to my room. As I saw the concern in my friends eyes (she is a RN and for her to look scared for me I was scared) I knew something was really wrong. The doctors all came up to check on me and I could not move my legs at all! My foot, my ankle, nothing.. I thought I was officially paralyzed. The one thing is though I could feel when everyone was touching me- it wasn’t like I couldn’t feel anything. I would stare at my legs yelling at them to move (my brain was not listening and not telling my foot what to do). I then found out I have neuropathy secondary to the Lyme. About 3-31/2 hours later my legs moved again my left leg was not the same but pretty close.. but my right leg was not even close and it still isn’t praying one day it will be. (I will talk more about how my leg feels in a later post)


I then started Physical and Occupational Therapy. My left arm and leg totally took over.. its amazing how your brain can work. I am a right handed person so when I wanted a drink -my left hand would just grab it- so weird. I couldn’t eat with my right hand ( not that I ate much of anything those two weeks.. I was so sick from the medicine and still do get sick), couldn’t get showers at times without help ( I had to sit in a chair in the shower ( I still need a chair and railing in my shower at home). I officially become dependent on others. I was not me and I did not know who I was anymore.. I was depressed for the first time in my life and yes this depression is still here.



After that terrible Wednesday- Thursday was even worse. As I mentioned before nurses and doctors would come in early in the morning they would come in and give me Rocephin intravenously, take tons of blood, and have a check up. They would always try to push down on my legs and for be to push back, same with arms and wrists and they would have me smile big, growl like a tiger, and lift my eyebrows up- I thought they were nuts…..until.. I finally realized why they did this. At 5:30am when the nurse came in to give me my medicine I noticed my lip was really tingling. I mentioned it to the nurse and she told me it was probably something I ate. She hooked up my medicine and left. As I lay there I could feel it getting worse. After about 40 minutes (that is about how long it took for my medicine to get in) the nurse came back and unhooked me. I told her that my face feels really weird and I did not eat anything- I just woke up! She told me just to go back to sleep. So I started thinking what the doctors ask me to do: growl like a tiger, smile big. I jumped up and went into my bathroom and looked into the mirror.. and I did all of that and I couldn’t on my left side! Now I knew what they were looking for and I guess waiting for- Bells Palsy.



I scooted my way into the hallway crying until the nurse came. I showed her and she told me to calm down and the doctors would be by shortly. Now my amazing husband stayed overnight with me almost every single night but that night he had to go to a rehearsal dinner and couldn’t stay over. So I called him and I called my parents hysterically crying that morning. All I have to say is I don’t know how my dad made it to Philadelphia that quick but he was by my side. My dad demanded for the team to come in. He asked them why is she getting worse, what else can we expect? Overall, I hit almost every symptom except luckily the Lyme never went to my heart but it was sure in my brain.


I was in the hospital from August 31- September 13. The Thursday that I developed Bells Palsy they also inserted a Picc Line in me- here is the definition. (http://en.wikipedia.org/wiki/Peripherally_inserted_central_catheter)

I went home with homecare infusion and home therapy (They wanted me to go to a rehab facility but I just really wanted to be home) In order for me to walk I needed a walker or at times a wheel chair. As when home I needed someone with me at all times- thanks to my wonderful family and friends I had that. I was on the Rocephin intravenously for a total of 28 days.


From the Lyme I developed poly-neuropathy causing sensory ataxia and "drop foot" on the right side of my body from the Lyme. No driving, no teaching, no making food, no showering alone, no anything.. I couldn’t do it.. I couldn’t think (couldn’t read any books- couldn’t concentrate), my whole body reaction time was off.. I was not the Samantha I knew… (and I am still not but I am working hard to get her back)