Hi, my name is Rebecca. I’m 23 years old, blonde hair, green eyes etc. I’m kinda short; but I definitely make up that for it in my attitude However, that’s not quite why I started this blog. I made it to record a very important time of my life.. which I expect to be happy, sad, hard, and fun…. but I wan’t to remember it, record it, and share it!
So I’ll this blog more like a journal or diary with timely entries to keep up with what is going on with me in my life, and just to kind of get things off my chest!! And then we will see where it takes me from there.
So, I’m sitting in my bed in Room 1449 on the Neurology floor at Hahnemann Hospital. Tonight happens to be a rather exciting night… My mom is sitting here painting my toenails fun colors while we listen to my iPod on shuffle! Who says hospitals are boring. Haha, the nurse asked if she could just come hang out in our room instead of working.
Bottom line is I’m in the hospital because last week the doctors here finally determined I haveSystemic Lupus Erythematous. “SLE” or as you probably know it: Lupus. It is a chronic autoimmune disease that can affect virtually any part of the body- from the skin to the joints, and even the brain. Lupus causes pain, inflammation and damage- ranging from very mild to very severe. I haven’t been told exactly what you might call my ‘level’ of the disease…but I am going to lean toward more severe- due to the circumstances of me being in the hospital. Which is where this post really begins…
I guess I’ll give a very brief summary of the past few months and then get into the actual‘incident’ that actually made the doctors take notice- leading to my diagnosis.
❤ BRIEF HISOTRY ❤
Ok- I’ve been having low back and hip pain for a long time. Several years. Over the past few months (likely worsened from my job as a Nursing Assisstant/Home Health Aide) the pain radiated down my sciatic nerve on my right leg, increased in severity, and led to me limping a bit. I knew something was wrong, but recently moving to a big city, I’ve found it very hard to schedule a primary care doctor’s appointment as a new patient without a 4 month waiting list. Absurd.
LATE OCTOBER 2011
One night on my way home from work, I realized I had to pee. I was sitting at a red light, and before it had a chance to turn green, I was peeing. I completely lost control of my bladder. In my car. At a light to turn on to the interstate. That’s when I decided I really needed to get checked out. Urinary incontinence is NOT ok for a ‘healthy’ young woman, and especially not ok for me!!!
Obviously in tears- confused and disgusted at what had just happened- I decided it was time to go to the doctor. Not the appointment I had scheduled 4 months back which was still weeks away. I needed a doctor then. So I went home and composed myself, went to dinner with my mom, and then we took a cab to the Emergency Room because I had to get something done about my back pain and bladder symptoms.
Hahnemann ER Visit #1 - Short list of symptom history
Shingles @ 18mos. old, Migraine headaches, skin rashes, pleurisy, back/hip pain, endometriosis, chronic fatigue, generalized weakness and joint pain….and now urinary incontinence
After a typical long wait, I got a room, was examined, and told my workup looked pretty good…but they agreed I should not be having incontinence whatsoever, and wanted to make sure it was not related to compression of my spinal cord.
Before they took me back for an MRI, the Chief Physician in the ER, took the time to step into my room and let me know she was much farther concerned for me than any spine issues. She stepped in because she had been consulted on my case, and told me she was very concerned for me and felt that there may be an underlying neurological condition. Presenting with the wide assortment of symptoms I’ve had all my life (but I guess never really connected each together). She specifically brought up Multiple Sclerosis, and lesions in my brain. From there, the night became kind of a fog. I guess a little bit of shock, a little bit of concern, and even a bit of excitement that someone might figure out why I have never ever been normal! (withnormal equaling healthy).
So I ended up leaving the ER with a relatively clean bill of health, but with two referrals to see certain doctors “ASAP.”
Referral #1: Spine Doctor
The next week I had an appointment with the top spine surgeon in the hospital system, and was seen and referred for more MRI’s.
Referral #2: Neurologist
This referral was harder to work with. It was a referral to neurology, but not a specific neurologist. AND, they couldn’t get me in until February.
One week passes, it’s now the first week of November and I am scheduled to see the spine doctor again for the review of all of my MRI’s performed. Still no luck with neurology… and I stayed awake each night looking up symptoms of M.S. on the computer- practically scaring myself to sleep.
Now, listen carefully: if you ever need to see a neurologist fast and you want them to take you seriously, this will work: All you need to do is get carried into the ER with a huge bloody towel on your head, crying, and a paralyzed leg. But the truth is, it was mortifying, terrifying, and I had virtually no idea what was going on.
THE BIG BANG - Here’s what happened:
Very early on Monday (Nov 14) sometime soon after midnight, I was in the kitchen, getting ready to go upstairs to my room for bed. I’d poured myself a glass of milk and was going to make a small salad. While walking in the kitchen, my right leg completely lost function, feeling, and usage. Therefore I fell forward. I suppose I tried to catch myself from falling with the hand with the least amount of items in it- which happened to be the glass. I went down, my head hit the glass first, shattered it and continued to the tile flooring in the kitchen, where I lay bleeding and most likely lost conscientiousness…? Thank God I managed to fall with my cell phone- where I called my mom (upstairs in bed) for help and a ride to the hospital.
LEVEL II TRAUMA
Next thing I remember is my neck being constricted by an awful C-collar, my clothes gone, and I was strapped down to a table surrounded by doctors and nurses asking me questions, performing exams, and speaking in what seemed to be a super speed language. All I knew was there was glass in my head, blood all over my face, I virtually had no idea if my right leg was there or not, I was strapped down, and they wouldn’t answer any of my questions. It was bright, cold, and terrifying.
I guess at some point that night they released me from trauma to a post surgery recovery floor and finally I saw my parents. I was lucid, I guess I remember the next few days, but now well. I was just very very very upset that I was a young 23 year old girl who may never feel her leg again. And the doctors didn’t know why.
The second or third day, they finally got me into a bed on the neurology floor. That is when things started to happen. I guess you could call them good things. Because for two decades, no one had been able to come anywhere near a diagnosis for my ‘sickly-ness’ until I got to this floor. If it weren’t for the nurses, neurologists, rheumatologist, and physical therapists, I’d probably never walk the same again. I’d been tested a ton of times for auto immune diseases because I do get sick a lot and the tests have always been fine. But finally, I was in the right place, at the right time, and with the right people.
I’ll end this post here, and start a new one of how they did my assessments and diagnosis, and all of the wonderful people I have met during this less than wonderful experience.
I can tell you one thing, because of this experience, NOTHING will EVER be the same in my life again. In good ways and bad. But, I’m going to lean towards mostly good things. You really truly do have to make each moment count.
So, tomorrow I will look through my mini-notebook of stuff they’ve been doing to/testing on/giving me, and how they got to LUPUS. And hopefully how all these things they are doing (including chemotherapy) are helping!
I am sleepy and in need of medicines, In case any one is counting I’ve been here 13 days so far, and am not leaving very soon, so I will continue to Part II tomorrow- ”The Hospital Stay- 14th Floor – Neurology”.
Goodnight everyone- God bless you
XoXo - Becca boo