...has left the building

Emily goes back to college this week. There are many things that have sucked about being sick for the last month, spending time with my daughter has been the silver lining to it all. It is not always easy to see your baby grow up. Even stranger when the roles reverse and they are now caring for you. But if the saying on the t-shirt is true about your children picking your nursing home, then I'll be just fine! Emily handled this stressful situation with more maturity, grace, compassion, and humor than some adults I know! I am so proud of her and could not have managed this without her. Thank you Emily. I love you. 

Bruce has chosen to leave this adventure for calmer waters, enough said about that.

So the New Year will bring new experiences, challenges and adventures. I hope to walk around the block, around the park, and around the lake very soon. Who knows what will come after that? My drumsticks will be back this week and just so you all have it on your calendars - the Taiko Recital is the weekend of June 22!

Transportation

This has been a week of discovery. For one, I have had to learn to slow down. I must plan activities throughout the day in small chunks and schedule times to rest. Now I know many of you would look at these times to rest as an opportunity for self-reflection or at least a chance to get your taxes done. Think of it, finally a time when you have to sit. You really can't go anywhere, imagine all of the things on your "to-do" list you could get done! Wouldn't you just love to have just a few days of that? No, instead a friend told me about a series of Vampire Porn books and I am on Book 3. I am not getting my taxes done or any of the other things I should be doing, but I can tell you A LOT about rippling muscles and shoulders that stretch his shirt in an "oh so sexy way..."

I am also testing out all modes of transportation. I can use a cane if it a short walk into a store, the "tennis-ball" walker if I'm not going to be outside, the four-wheeler walker if I have to far (up to a block) and of course let's not forget the Target Scooter. Haven't you always wanted to try that? Well I'm here to tell you; they don't go fast, it makes a very loud beep when going backwards, it's easier than you think to run someone over, and Christmas shopping is not the time to be trying this! Holy Cow there are a lot of people out there! It's funny, some people get out of your way, some seem slightly scared (maybe they have been hit by the scooter already) and then there are the ones that don't actually see you. I wonder if this is what it is like to be short? ;-) It is a strange kind of invisible when using a cane, walker or scooter. Though on a happier note, one guy did flirt with me at Target. Bruce wasn't too sure about that and then you have to wonder why he was flirting with the lady in a scooter, reminded me of the toe guy...

Christmas will be quiet. I plan on staying home and enjoying family and friends from here. I am overwhelmed by all of the love and support I have received. I wish you all Happy Holidays!

Queen

Home is wonderful! I haven't had to cook because of the wonderful meals being delivered. I spent Friday like a Queen with friends stopping by and entertaining me. I was doing so well I even walked from the bathroom to the living room without my walker. All I needed to do was get home and I'm cured!

Saturday I decided I was going to go the whole day without the walker. I started with a shower (because I can!), did my hand exercises, and cleaned the kitchen. That wasn't much but I shouldn't overdo it so I sat down to rest and called a friend. While chatting on the phone I realized I couldn't pick up my Diet Coke. Those of you that know me know the significance of me not being able to drink my Diet Coke in the morning. I have to say it scared me a bit. Luckily the friend I was talking to was also a neighbor and she rushed right over and put a straw in my Diet Coke for me. I have the best friends!

She also helped me get to bed and I stayed there the rest of the day, not able to move my arms or legs. Clearly this Energy Conservation will be my biggest challenge. Bruce and Emily cleaned the garage so if I'm ever able to drive my car again it won't be covered in snow; and I am once again back to being treated like a Queen with Bruce making me dinner and both of them entertaining me! I am very lucky indeed.

The Virgin Diaries

I have now watched The Virgin Diaries, Secretly Pregnant, Big Cat Week, Untold Stories from the ER, and Toddlers and Tiaras. It was time to go home. They let me out at noon today and Emily brought me home to my nice clean house. I don't know how she got it all done along with visiting me and all of her other duties. She is amazing! She was so modest about all the work she did around the house, including bleaching the bathroom floor and adding in a new railing. What would I do without her?

If I start to thank everyone individually, my fear is that I will forget someone. But I do know the spiderwomen were instrumental in making my house pretty and functional. Thank you!

Party Day

Yesterday was filled with so many activities it felt like a party. I went bowling, played tennis, made a bracelet in jewelry class and walked 264 feet! Of course the bowling and tennis were on the WII and the walking was with the walker, but that's a lot of excitement up here! I wonder if I need to name my walker if he's going to be spending all this time with me? Something to think about... The bracelet was ok, it lost some of it's appeal when I had to fight the 80 year old woman for the beads. I guess I did have the advantage, but she was just so whiney!

I really don't have anything else to report, the walls in here are the same color as the miserable sky outside. I know I hear some of you saying, "Oohhh, I think she's getting a little down." No, I think it is a good sign that I desperately want to break out and get back to some normalcy after two very long weeks. Soon, I pushed for today, maybe tomorrow, no later than Friday. After that it is in home physical therapy for a couple of weeks and then out patient PT. Baby steps...

Cooking Lessons

Today I went to the kitchen. Finally something useful! Instead of the staff being amazed that I can dress myself, they were going to teach me actual skills I could use. I walked to the kitchen (which was next to the nurse's station - Yay!) and got introduced to the stove, fridge and microwave. Apparently getting into the kitchen meant that I could recognize major appliance and that I was capable of making a piece of toast. I demonstrated my amazing culinary skill with the toaster and passed. So much for cooking lessons...

I am doing such an amazing job, there is discussion I may get out of here on Friday. We'll see how the next day or two goes.

Assisting Janis

Let me start by saying I have been receiving excellent care. The situations I am about to describe I take full responsibility for!

Of course both events involve showering, that is my new obsession. I'm still at a loss at the expectation that two showers a week is somehow ok. I would think there would be something in the Geneva Convention about that, but I digress. The first example actually happened a week ago. I was still a "fall risk" so they kept turning my bed alarm on like a smal child! Lindsay Lohan got an ankle bracelet, you would think I could have earned at least that!

No matter, I figured out how to disarm the bed so I could at least go to the bathroom. So the Aide comes in and asks me if I would like to shower? Of course I'm all over that! So he gets everything ready And let's me know I'm good to go hmmm, he must know about the bed alarm and clearly doesn't know I'm not even allowed to pee alone. But what a treat! I'm going to get a shower and nobody will be watching me (voyeurism just isn't as much fun if you're not on a date) I can do this, it's not like I wasn't showering at home just three days ago. So I thanked him, disarmed my bed and headed for the shower. My head is pounding and spinning from the Spinal Tap, my legs and arms aren't really my own with all the tingling and weakness, but dang I'm going to get that shower! I made it but it wasn't pretty or safe. I crawled into bed a shaking, painful mess. Not to mention I went to bed with wet hair and that's never a good look.

So last night, new hospital, new shower, down by the infamous Nurses Station. Saturday is my "day" and I'm not going to miss it. Again the Aide gets everything ready (they don't pay them enough for that job) and then asks me if I would like to walk to the shower. I wonder? Maybe I've just been relying on the walker because it's there? Because I can't wait to see how Rae Ann is going to knit a Diet Coke holder for it. Maybe I can walk there and I've just been too scars to try? Relax! I didn't give up the walker, but I didn't mention that I need the wheelchair as well. I made it to the shower, further than I've ever walked! Got my shower (that hospital soap really is kind of nice shampoo) and now I'm ready to go back. It's time to head back. I make it about 15 feet and realize I'm not going to make it. I tell the nice Aide and she is confused, she doesn't have a wheelchair with her. My arms give out first so now I'm draped across the walker (thank god I wore sweatpants with my hospital gown or... You get the picture) she arrives with the wheelchair and we make it back. I am now on Vicadin for the pain I have caused my body. Lesson learned.

On a happier note, Annie came to see me today! I could BE WHEELED down to the front entrance and hang out with her. It was the best therapy ever!

Frequently Asked Questions

I thought today might be a good day to answer some of the questions that I'm asked repeatedly. Kind of an FAQ for Surprise Acute Syndromes.
- Yes, the numbness is gone. It pretty much cleared up with the 5th day of IVG Treatment. I have all my feeling back.
- I don't have my reflexes back. Yes it is a strange feeling to not jump when hit with the hammer. No they don't just keep hitting harder until you jump.
- Yes, I can dress myself and brush my teeth. (this puts me way up on the bell curve with my current competition).
- Yes I have had a BM today, and thank you for asking in front of everyone.
- Yes, I'm walking, though I'm using a walker. I'm going about 50 feet but it isn't supposed to be a competition. (personal goal is 300 ft)
- No I'm not sick of playing with the up and down buttons on the bed.
- Surprisingly when asked your name and birthdate seven times a day for verification purposes it actually does get difficult to remember. I'll be seeing a memory person today... In my defense anyone at my age could easily give their child's birthday!
- Yes I am tall.

All Caught Up!

"When you listen to your body whisper, you don't have to hear it scream"

Now that I am caught up with what has happened in the past two weeks, I can have more detailed posts about funny stories. Today, My mom and sister visited, followed by Dan and Lynette, followed by Chanel and Mark, followed by Bruce. Of course, Emily has been here all day writing. These visits were a nice way to break up the occupational and physical therapies. Got to take a wheel chair through the tunnels to sit in the cafeteria today! Very exciting change of scenery. One of my goals is to live the quote my sister gave me (found at the beginning of this post) so I don't further damage my nerves. Hopefully I'll post more tomorrow!

Transitional Care Unit

Wednesday, December 7th:
Moved from Fairview Southdale to the Fairview Riverside Transitional Care Unit. I was so excited to have my headache gone the day before that I overexerted myself and can now only walk 20 feet with the walker. Emily watched my balance test and had a good time. Simple things like standing on one foot, getting up off the bed, and looking over my shoulder have now become difficult. But apparently I'm well enough to not qualify for acute rehab, so they sent me to transitional rehab instead.

On the way there, Emily, my own personal transportation, took me by the house so I could pack and see Annie. Because they don't send you with a travel walker, Emily had the house prepped and ready with chairs every few feet and an umbrella to use as a cane. Annie was mad at me for being gone so long, but luckily she has Laura to take her running most days. By the time Emily and Bruce got me back in the car, I could tell they were glad to get me back in the care of registered nurses.

Thursday, December 8th:
My first day at Fairview Riverside TCU. Got lots of physical and occupational therapy. Also, not happy that I only get two baths a week. I got a drum to play while I am recovering. It's not a taiko drum but it'll do. Spent a lot of the day resting, hoping to do more tomorrow.

Treatment

Friday, December 2nd:
I'm in the hospital and diagnosed with Guillain Barre Syndrome. The pins and needles have moved to my hips and elbows. The neurologist starts the 5 day IV treatment. After Day 1 I feel the same except now I have a nasty headache.

Saturday, December 3rd:
The doctor thinks the headache is from the IV and slows down the input from two hours to eight. By the afternoon, we decide the head ache is from the spinal tap. The nurses give me everything from Advil to oxycodone (which made me feel like I had drank four vodkas) but nothing worked.

Sunday, December 4th: 
I want to shoot myself.
Can't move.
Throw up on the Physical Therapist.
Headache so bad.
Ready for blood patch.
Have to wait until Monday.

Monday, December 5th:
The blood patch (which stops the leaking spinal fluid causing the head ache) is delayed until 11 am. The pain is amazing, and by 11 I'm begging them to put me out of my misery. I'm pretty sure I offered my first born (my mom is a meany jerk - Emily, the one writing this). By the time I get to radiation, I was telling them they didn't need to wait for the novacaine to kick in. By the time I got back up to my room, the head ache was gone. It was a lovely day.

Tuesday, December 6th: 
Tuesday was the last day of the 5 day IV treatment. I can now tell that it is working, and the tingling has moved back down my body. First serious day with physical therapy and I could walk half way around the nurses' station with a walker. My spiderwomen held their meeting in my hospital room that night which was a lot of fun.

Spinal Tap

I checked with several expert sources on my way to the ER.  (Emily was driving so it was safe to use my cell phone.) The overwhelming response was "that's going to hurt like hell, get all the drugs you can". Armed with this new knowledge, I went into the ER with very clear requests. "I'm here for a lumbar puncture, I will need the strongest pain medication available." Sadly this person was just the receptionist so by the time I obsessively said this to all that would listen, there seemed to be some concern that I was just looking for narcotics.

The doctor finally arrived and assured me he would give me something to relax. He came back with Ativan. Ativan? That's a kid's drug. (Again, some concern over my knowledge of pain medication.) He promised me it was stronger with the IV form. I, of course, said I couldn't even feel the effects of the first dose, so he gave me more... I may have bruised my nose as my head hit the table.

When I regained consciousness Emily and Bruce were playing a great game of "Get Janis To Say Things She Wouldn't Normally Say". They told me I said things like evelator instead of elevator, even when they repeated it to me the right way over and over again. The spinal tap showed that the level of protein in my spinal fluid was 67 (units) - below 60 is normal, while 100-1000 indicated Guillain Barre. However, when coupled with my symptoms, it was still high enough that the doctor believed I was in the early stages of Guillain Barre.

The Lead Up

Monday, November 28th:
My toes were numb. They felt prickly like pins and needles. It was distracting but I did nothing about it.

Tuesday, November 29th:
My toes still felt the same - like they were really, really asleep. Strong pins and needles. I kept moving them because they felt numb. That feeling had moved up to the balls of my feet. I mentioned it to two co-workers and they "strongly" suggested I call the doctor. (thank you Jacalyn and Sarah!)

Wednesday, November 30th:
The pins and needles had moved to my ankles. My legs were beginning to feel tingly and unstable and my hands were tingling. I could still work, walk, do all the normal things, it just felt odd. The doctor had several possibilities; B12 deficiency, Guillain Barre Syndrome, or MS. We started blood work for the B12 and an MRI for the MS.

Thursday, December 1st:
I went back to the doctor for results. By now, my arms and hands were "asleep" from the elbows down. My legs were "asleep" from the hip down with the strongest pins and needles from the knees down.

The tests told us my B12 was fine and I didn't have MS. The next step was a neurologist, so I headed off to Happy Hour while my family doctor made the appointments. I didn't get 15 minutes from the office before he called and had me go to the ER for a Lumbar Puncture.