2/16/16

Some updates for my blog. I'm not even sure I have too many readers at this point but I honestly I am fine with that.

This week...Up & down. So many emotions. Yesterday I had a giant pity party for myself. I wasn't even in that much pain. It is usually when I'm not in a ton of pain that I feel tired and emotional. Because when you are in the type of paint that comes with CRPS, you don't think of that kind of thing. You just think about dying or taking something to feel better.

I'm off Valium. My awesome family doctor gave it to me to help with all the drugs given to me through my IV at the ketamine place. I have been off for over a week and that was an easy thing to stop.

Thanks to my mom for this vintage romper. She had it in her ebay store and I wanted it. So bad. She sent it to me. It is lightweight and doesn't press against my skin which is awesome. Also, the legs are wide enough that I don't have to take it off to pee. Even better! This was about three weeks ago and my weight was down. I've gained a few pounds since then which is good. My stomach is completely good at this point!

Smiling! Lower pain from resting, resting & resting.

So, what is the plan? I'm 36 years old, live in FL, happily (so happily!) married. I should have a plan. My plan is to take it a day at a time. I tried some non prescription medicine the other day and had flash backs to what happened while I was on the ketamine. There were two flash backs that lasted a minute or less each. But they were scary and I was freaking out for awhile.

Anything that makes me feel different is scary. It is still too fresh in my mind. Two days ago I tried 1/4 of my lowest narcotic, Percocet. I hate narcotics with a passion. But I hate that awful pain more. I wanted to see if it turned scary. It didn't. I was so thankful. I wanted to test it basically to see if that is something I could use in the future. In case I needed to do something or be somewhere and needed to take something, I have it available.

Thanks to my aunt for this fun picture. I made it when I was young and she saved it. It made my day.

What else? Baths seem to be good but leave me exhausted. Like panting exhausted. I'm pretty weak from withdrawing from ketamine and Benzos. I'm also weak because I do nothing all day, almost every day. I did sit outside for a bit a few times last week. Maybe a few minutes at a time. Its 70 here in FL and that sounds warm. It isn't for me. I bundle up with winter hats and as many layers as I can get on and then sit in the gravity free chair with a blanket. And freeze.

And then other times I'm sweating and have chills. That is mostly when the pain hits hard. I think the weather gets warmer here, I will start to feel a bit better. I don't eat a lot when I'm in pain and my mouth gets really dry. Wondering what to get someone who is sick? Cough drops, any kind of hard candy and slipper socks. Yup, I'm 90 years old. My husband bought me the giant bag of hard peppermints and they help.

Resting is good usually. Laying is best since my hips hurt pretty much all the time. Not like crazy nerve pain hurt but just like they have the flu mostly.

We need a coffee table eventually. We are using Rubbermaid totes and they work just fine. But this lady was on Craigslist. So unique! They wanted $500 so it wasn't even worth trying to convince my husband how cool she was. He said absolutely not. She might have needed a bit more net if she was mine. I told God I want her in my heaven home.

Distractions. The more senses I can distract, the better. This is when the pain isn't crazy. Because then it just truly doesn't matter.

Did the Ketamine work? Once in awhile I get these times, maybe an hour at a time, where I feel good. Like good good. My vision gets sharper and my pain is low. I may average anywhere from 5-6 on most days. When this happens, it is at a 1 or 2. So amazing. I'm not sure if this is the Ketamine but that is what I'm attributing it to.

Would I do Ketamine again? No. Absolutely not.

Would I try something else? Yes, but honestly I'd be pretty scared. There really isn't anything else to try at this point but CRPS was officially named a rare disease as of last year (2015) and the medical community will come up with new things eventually.

So what do I do all day? I watch a lot of YouTube. Anything super positive and encouraging. Old Supermarket Sweep episodes, Bob Ross and some newer shows like Good Mythical Morning and The Frey Life. I read a lot but mostly on my phone since books are hard to hold. I talk to God a lot.

What do I eat? Well, I was eating super healthy. Like raw fruits & veggies, almonds (they are my fav!) and some grilled chicken. Then I got sick and nothing was sticking. Then I worked my way up to crackers & some pasta. I did try spinach a bunch of times but the fiber was making me sicker. I'm finally eating again and haven't had any stomach issues the last few days. I have a cavity on one side of my mouth and it is making eating hard foods ouch-y. I will get to the dentist eventually but for now I'm eating soft foods and just ignoring it. Because drilling into my mouth, close to my nerves, is not something I want to think about right now. Maybe next week. Maybe not.

I'm hoping to make it to the grocery store later today. My husband pushes me in the wheelchair. I am pretty excited that grocery stores are getting new carts called Caroline's Cart. If your grocery store doesn't have it yet, I encourage you to look it up. There is a toll free number to call.

It will still require me sitting but getting fresh food is worth it. We will hopefully be getting a reclining wheelchair soon. Insurance won't cover it which bums me out. But since the disability money came through and we have had a few more donations, we are looking. There are two places in our area that sells them. I just need to go and try them out. Which requires a lot of effort. See where the narcotic could come in handy?

Photo credit: lakecountrynow.com

My disability came through! This is a huge and wonderful thing. It means that I will have health insurance as well as some money coming in. Being sick is expensive. We have had so many people donate and we are appreciative to each & every one. I have a stack of thank you cards that will get written. I promise.

We have a friend, one of our best friends, coming tomorrow to stay for a few days. I'm pretty excited. We have HUGE support from everyone back home (NY, PA & even all over the world) but no real friends to come visit when I'm feeling up to it. Making new friends, especially those around my age, is almost impossible right now.

Our house is only about half done but it is one of those friends who won't care and I'm so glad. I don't have to concern myself with showering or dressing in real clothing. I wear very oversized, soft clothing that doesn't hurt and it isn't pretty.

Bare did all he could do with our second bathroom, which had black mold all behind the shower. He demoed it to the concrete and we hired someone to fix it. Tile is cheaper than a shower surround because the space is an odd size. So we asked if they could put boxes into the walls to hold shampoo, etc. We saw it on HGTV. Fancy, right? Anyway, they said they could. Except they put them in and nothing fit. Ha. I won't say "men" at this point but know I'm thinking it. (And now I've said it)  So they had to take out the boxes, fix the plumbing and we now have boxes that fit products. Thankfully we are paying a flat fee for the install but I did feel pretty bad when we had to tell them. I made my husband do it. Have I mentioned how much I love him?

What it looks like right now. We have all the tile. Home Depot had sent us a 15% off coupon when we moved and so we picked a plank light gray porcelain. It was like $2 a square foot which is more than our normal cheap-o stuff but I think it will be worth the extra few dollars in the end. Plus it is gorgeous. This is going to be my husband's bathroom and he is so selfless. Seriously, during my pity party he just held me on the floor and told me how well I was doing and how pretty I was. Ha. I am SO not a pretty crier.

 

Tile!

Our lovely Johari

And one last random thought before I stop for today. We had a call from Compassion International yesterday. One of our older kids is graduating early. She is becoming a tailor. We have sponsored her for 12 years. We get to write a final letter which made my heart so happy. She lost her father when she was young and it is just her mom, sister and her. They have purchased goats & built a home out of metal with the few extra dollars we have sent them over the years. She has grown up to be beautiful - inside and out. I cannot wait to meet this girl in heaven someday. Johari, we love you so much.

So there are my ramblings for today. Well, not all of them since I'm fading. But I'm thankful to everyone who reads & prays. Thank you!

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 1...so 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.