Tuesday, February 16, 2016


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.  

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!


  1. Thank you for posting, As a long time reader I have been following your story and wonder how you are going. I'm sorry for your pain and hope one day there will be something that will help you.

  2. Hi Mellissa Rose! I'm another long time reader (from your old stomping grounds Long Island). Your husband is right, you are pretty! I too hope there is something that will help you to feel better in the near future. :)

  3. Just discovered your blog. Praying for you!

  4. Just discovered your blog. Praying for you!


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