Saturday, February 6, 2016

Ketamine Fail & Other Updates

Wow. I did not want to blog today. Or for the last few weeks. Things have been rough here and this blog is going to "keep it real".

So, I have CRPS which almost all of you know. It is an awful thing. After many attempts at surgeries, injections, blocks, treatments, medications, etc, etc, we came across the "newest" thing: ketamine. Ketamine has actually been used for years and has promising results with CRPS. So, we did a load of research and moved to FL (kind of for the treatments, kind of because we just adore the sunshine and hate the PA winters).

My ketamine started on January 18. It started at a low dose and I was awake for almost the entire 5ish hour infusion. This is more than a reputable doctor. He is well known in CRPS circles and is even in the new movie coming out about CRPS (Bob Marley's nephew made a movie about his mom with CRPS). Anyway...It started out okay. I said "I feel strange" about a zillion times. Maybe more. I apologized to the nurses repeatedly about saying it. My husband said I talked for about 5 hours non stop. Ha. Poor guy. He was in the room with me the entire time. Nurses were in and out and checking my vitals and monitoring things. So day 1 went well. I was on 200mg of Ketamine. I dry heaved a ton but without any food/water in my system, it was just that. And I remember telling the nurses that I was okay with vomiting since it was no big deal.

Day excited!

Day 1

Day 2 was Tuesday and I was still feeling good about the entire thing. The staff rocked. The doctor told us we made a cute couple. They upped the dose to 400mg. I slept through a lot of that day. In fact, here is a fun video my husband made on Day 2. It posted it above but pretend it was inserted here.

Day 3 was upped to 600 mg. At this point I don't remember a lot. I remember asking for water a lot. Like a lot and lot. And still apologizing to the nurses for all my craziness. I still knew I was safe and okay. I remember hating the feeling. I like my brain. It is fast and smart (not bragging but I like the way it works) and anything that makes me not feel that way is not good in my book.

Day 3. Still doing okay but not great.

Day 4 was upped to 800 mg which is where I was to stay. Now it was at this point they were pushing medicine through my IV to keep me calm. My husband said there was a lot of moaning going on in the other rooms. There were maybe 6-8 rooms all close together so the nurses could check constantly on everyone. We had our own little room though and my husband stayed the entire time. Day 4 was not good at all. By the time we left, I hated ketamine. The doctor had prescribed some lower dose oral ketamine (50 mg) to take at night. Thursday I skipped it. There was no way I was taking more. I told my husband I would give it one more day but it was pretty awful. I had no idea things were going to get worse.

Day 5, Friday, was my last day. The Ketamine treatments were to last two weeks. I stopped after Friday. Without going into too much detail, I had a break in my reality. I didn't even know such a thing was possible. And if you don't have any ideas of what I'm talking about, be so very glad. I literally was stuck in the blackness of my mind. I couldn't move. I had concrete running through my body and making it impossible for me to move. I saw half humans and half demons. I was there for what felt like all eternity. I never thought I would be able to leave. I remember looking for any hope and not finding a single thing good. I was dropping through space with no ground nor floor. I remember every once in awhile a door would partially open but not enough to let me through. I think that was my husband touching my head. I begged them to stop. My husband remembers this but we were told that this was normal and they pushed more drugs to calm me outwardly. Inwardly, terror. Sheer torture.

Friday night was awful. My husband held me and I tried not to close my eyes. I don't remember a lot of the weekend. I tried not to fall asleep at all. I had night terrors (which weren't as bad as being stuck in blackness with no hope). He slept with me for night upon night waking me whenever he heard me say anything or cry out.

On Monday we called the center and asked them what I had been given. We still don't exactly know even though we asked and asked and asked. Finally a week after my "episode" (that sounds so much better than me going crazy), they faxed over records to my family doctor. I go this Tuesday, Feb. 9, and will finally find out what I was given. Each nurse or medical record person had a different story. I finally did find out that I was given about 90x of a class of medication called Benzos. I was taking these off/on and my prescription was .25mg at night. That was my only medication before Ketamine and the doctor knew it. I took myself off for the last two weeks of December because honestly I hate to get myself use to anything prescription-wise. Been there, done that. (I had major narcotics given to me for months or years and took myself off cold turkey (BAD IDEA!) about two years ago).

We finally found out they gave me 20mg in 4 hours. Yes, 20mg. I was taking 1/4 mg a day. On top of whatever else I was given. Which we still don't know. I believe someone mentioned Versed on top of the 20mg of Midazolam.

CRPS pain. Yup, it gets bad.
Clearly this was a fluke thing. Very few people go through what I went through. In fact, it isn't even a percentage. Like 10%  of people have hallucinations, 10% of people feel nausea (I'm making up those numbers but you get the idea). But there was not a single number on the internet of people going through psychotic breaks.

People rave about Ketamine helping in so many ways. I had night terrors as a child and this was NOTHING compared to those. My mind was in and out until about Monday. So four days. I was petrified and nothing could compare or explain what happened.

We called my family doctor Monday because it was either that or check into a psych ward. Honest, that bad. He was/is amazing and got me in on his lunch break. At this point I was okay to blink without seeing terrible imagines but I was still floating away from reality. My husband had to constantly touch me and remind me I was here. On earth. In this world. I loved the physical pain because it felt real. I knew it was real and that helped.

I was freezing/sweating from the withdrawal. Still am. This is my teddy which is the oldest item I own. I remember clutching him as a child during my night terrors as well.

My family doctor said I was given way, way too much and said I would go through some pretty nasty withdrawals. Which I knew thanks to Google. He gave me a low dose Valium and that is the only thing I have taken in the last 11 ish days. It is helping with the withdrawal. But honestly the withdrawal is still nothing compared to what happened. I would choose withdrawal to a psychotic break down any day.

My CRPS pain is back. I've had some rough days. My body is weak and I drop to the floor a lot. I lay on the floor because it feels painful in a different way than the inside of my body feels. It feels cold. My husband walks behind me to support me. Most days my heart breaks for those that are in terrible situations. I am very raw and emotional. It was bad you guys. I did not feel safe and that was a scary thing. I made a list (I don't remember journaling but I did a lot) of who I felt safe with. My husband made the top of the list and so that helped me through this.

I am slowly cutting back on the valium with my doctor's orders and my wishes. The pain will get worse as this happens but it is just that. Physical pain. Really awful pain but still, I'm here.

I've had letters and gifts these last two weeks and I thank everyone who prayed and thought of me. Two of the most special items were a prayer shawl from a woman I met just once. It is aqua and gorgeous. The other was from a dear, dear friend. I hired her back in 2009 when I managed the retirement community. Her letter meant so much to me that I clutched it for days. I felt safe with that letter. And so Annie and Gabrielle - thank you. And to everyone else, thank you as well. Your cards are hanging up in my room and cheered me up and encouraged me.

We really don't have anywhere else to go from here with the CRPS. Some days I can walk without too much pain (thanks Valium - you rock). Some days I cannot get out of bed. My muscles are cramping and leaving bruises.

 I'm going to stop here; my hands hurt. I know I am safe now. I know I am okay. I wish it had worked and I still think that it is helping a TON of people. But I'm done with ketamine. I wouldn't go back if you paid me. And it cost a lot so that isn't happening.

Saturday, January 16, 2016

Long Overdue Post (and a crazy ton of photos)

Wow. It has been months since I've blogged. So much has happened so here's a quick recap. 

From April 2015 through October 2015 we were renting a home on Anna Maria Island. During that time we were also looking to purchase a small home, sell our home back in PA, find me specialists, reapply for disability, find my husband a job, etc.

In October we drove back up north to get the rest of our stuff since our PA home was closing in November. It closed a day late which was fine and allowed us to move into our new FL villa on November 7. We also attended my sister's wedding and was able to see some of my NY family :)

I'm the one sitting down :)

Disability was recently approved which is another story but it will help financially with all the medical expenses and my not being able to work. My insurance will not cover Ketamine treatments. Thank you to all who prayed, wrote letters and encouraged us through all of that.

On a lighter note, I chopped my hair in November. 12" came off and it feels so much lighter. And I can now brush my hair by myself so woo-hoo to that! 

Before, taken in October before having my hair & make-up done for my sister's wedding

November 2015

My hair does this natural wave/flip thing.

Sent to Wigs for Kids!

Some days it is so curly!

December 2015

January 2016 - my hair is already starting to grow back

We spent Christmas day at the beach for about an hour and it was lovely. The hubby took a dip in the Gulf but it was cold and there was no way I was getting in! It was the first time since the beginning of October that I made it to the beach.

My two-week Ketamine treatment starts THIS Monday and I'm pretty excited. We held a fundraiser and thank YOU to every person who has prayed for me or donated. Our goal was half of the $5500 and we hit it just today! We thankfully have the rest saved from the sale of our PA home. 

Thanks Jaime for my care package! These cheered me up :)

The first several weeks after moving here were pretty terrible. I wasn't out of bed but maybe to go to the bathroom. I needed help getting off the toilet. Things were depressing. Fast forward two months and I have rested a lot. Some days I'm okay with my medications. And by okay I mean I'm out of bed and maybe in the hammock or even folding clothing or some light dusting. Some days I am a mess regardless of what I take or do. 

I have watched my husband do the most fun projects (to me) and I haven't been able to participate. And the "funny" thing is that he doesn't even like to do projects or paint. And that has been quite the emotional roller coaster, especially with not knowing anyone down here. My husband has made friends but I just don't get out often. Maybe once a week to go to Publix (the local grocery store) and even then I'm pushed around. I don't want to turn this into a complaint. I live with a saint. The man will take me wherever I want to go and do whatever I want to do. It is amazing. But I will be glad when I can just do something by myself again. And perhaps make a friend or two. And I'm hoping God allows Ketamine to give me that. 

So, if you think about me next week, please pray the Ketamine works and I don't have any nasty side effects from it. The one I'm most nervous about are hallucinations since I still remember the night terrors I had as a child. And I remember them vividly. 

The rest of this blog is just photos from the house. Bare, my husband, has worked ridiculously hard most days. He also works most days at local retirement communities. Today was his last gig before my two week treatment since he needs to be there with me. 

And here is what the house looked like when we purchased it. Thanks to Zillow for the photos.
Before, living room

Before, living room

Before, kitchen

Before, kitchen

Before, kitchen

Before, guest room ("my" bedroom)

And the AFTERS (mostly):

Our living room, which is the first room you walk into from the front door (no real entry): 
 The laminate floor was recently installed before the sellers sold it. It isn't our style necessarily but we are thankful it is in good shape and is a fairly neutral color.

This is the second nicest piece of furniture I have ever owned. The first was my adjustable bed that we sold to a friend back in PA so it wouldn't have to make the trip with us. This Cindy Crawford couch comes in at a close second. And did I mention, it was FREE??? Seriously, if the seller is reading this, THANK YOU! (I gave her my blog in hopes she would get to see how lovely the couch is in our living room)

Our little entry area

The Lanai (also called veranda by my husband). This room is behind the living room. So you can fully see it from the front door. It normally has glass sliding doors up but we took them down for now. We put up a ceiling fan (the hubby kept hitting his head on the other one) and organized...some. This room holds all the tools, all the paint and everything else we need to fix our home. So it is messy.

The dining room which we are using as the office. We don't eat at the same time nor do I cook. Ever. So this room functions better as my husband's office.

What would you do with those rolling file cabinets? Anything? I don't necessarily want to pretend we live with no clutter but I dislike anything that just sits out and doesn't have a home.

The favorite room. 

My husband found these stools on the side of a junk shop-like place. They were $15ish (I have it written down but I'm too lazy to get up and look) but were the wrong color. So, we upgraded them with some acrylic paint that I had already. Target had their "holiday" chair pads on sale. They are white with silver threading and were $10.

The light panels were my favorite find. I literally laid on the floor and tried to picture what would work with our dropped ceilings. Raising the ceiling was not an option due to the duct work and cost. I googled acrylic light panels and eventually came up with these. They are called Sky Panels and they are about $40 each.

Thanks Jaime for our new friends!

The master bedroom & bathroom. This is my husband's side of the house. It is through the living room and his room connects via a sliding glass door to the Lanai. My selfless husband said he'd like to do this room last so the rest of the house would be nice for me.

During my husband completely ripping apart the bathroom
So right now we have no second bathroom. Our home is a work in progress with my husband doing 95% of the work himself. I'm amazed that in two months he has gotten the house to come this far!

"My" bathroom - just 7 steps from my bed! This is another room that hasn't been changed yet. So far it has some white primer on it just because we had it left in a tray and didn't want to pour it back in the bucket. It was yellow like the rest of the house.

 The former owners left the pretty shower curtain for us. Funny because we had this same curtain back in our PA home. Except I used the fabric to make valances for the laundry room.

See the little built-in TP & magazine holder? LOVE it!

The laundry room. Not a single thing has been done to this room either. The washer & dryer were left for us and work perfectly. 

Inside the closet is the A/C something & the Hot Water something. 

And the last room in our 1200 sq ft villa is "my" bedroom. This was the first room Bare started. I had a vision and he made it come true. 

Aqua paint inside my closet and on my ceiling! This photo was taken before the hubby put the closet doors back on. I have also since downsized the clothing even a bit more.

Oh how much I adore this funny creature.

We have two outside areas. The first is our front yard which connects to my sliding glass door. The second is off the lanai and I've been back there exactly once so there are no photos.

And some of the chaos from the last two months: 

This was the living room as of about a month ago.

Living room

Living room - getting there!

Living Room

Have you tried the OfferUp app? Amazing. It is like Craigslist but better. I look at it often and several times have made a bit of extra money. Now, Bare has a trailer, a dolly and can lift like a zillion pounds. So I never need to go help nor even get out of bed. He goes and gets the things, cleans them up and I photograph them. Usually I'm looking for items for our home but occasionally we realize they don't work when they get in the house. It is so nice to have a quick & easy option to sell these things. 

One thing I hope to do again is to yard sale! We made it to one sale last week since it was right next door.

Thank you for every single prayer & thought. God has truly been amazing to us and continues to show Himself in so many small and large ways.