Thursday, August 17, 2017

August 2017 Update

Hi everyone! I went missing for awhile.

So, here is what has been happening since I last posted.

-My health is doing well most days. Compared to a year ago, I would call it great most days. I have a ton less nerve pain and honestly don't want to die almost 90% of the time. I really, really think the meds I am still taking helped me so much. The one that is working the most for me is Pentoxifylline. I seriously feel I can feel more oxygen getting to my limbs with this one.

-I am still eating healthy which boggles even me. Cherries, blueberries, peaches, green apples, bananas, spinach, some potatoes and softer nuts. I eat chicken every once in awhile (maybe once a month or less), especially now that cherries are in season. Thank you summer! Oh, and I had French fries three times when my mom was here. They were yummy, as you could imagine.

The hubby putting TV wires inside the wall.

This was quite the outfit to deal with the flooding outside.
-My husband is still amazing. I'm so blessed.

-My husband found out that he has an older sister! The story is long and I won't bore you. But through Facebook, his niece contacted him. He found out that his father had a child when he was 16, long before his dad married and had him. His newly found sister, brother-in-law, niece and nephew-in-law visited in April and it was an amazing experience. He always thought he was an only child!

-We also had one of my close friends and her family visit in early July and my mom visited in late July.

-April through July we were able to "entertain" more because of Percocet and my meds. I went off low dose Naltrexone as soon as I found out that my sister-in-law was coming to visit so I could take pain meds when I needed them. We ate out TWICE in April which we never do. I was able to sit for over an hour each time. Yippy!

-I am now starting to go off Percocet which is going to be about a two month process. It is hard to tell my hurting body that, although there is a bottle of something that will take away the pain sitting right there, it cannot have it. I'm also off Ambien completely. Woo-hoo!

-My panic attacks and the severest of my anxiety has absolutely decreased. These came after Ketamine and were pretty constant for awhile. The panic attacks are down to once a month? I still get that "out of body" kind of detached feeling that comes with denationalization disorder (which is known to stem from Ketamine) but meds are helping this as well.

-I have started to sell on ebay again. This is a love of mine that I have SO missed. Walking through a store feels like pure joy and a thrill still goes through my body that I'm able to walk and enjoy it. This is also partially due to Percocet so this may decrease over the next few weeks.

-We have been enjoying the communities heated pool. The water is around the 91 degree mark which I love. Florida has been 90-100 degrees most August days and I am loving it. I love the humidity, I love the "closeness" of the air when I step out and am struck with a wall of heat. I feel comforted by the intense heat and my body does better in it.

-We got a new air conditioner. Ha. Ours was 21 years old and was going strong until it wasn't. I love the family run business that installed our AC. The owner, Rory, calls me her daughter.

-I baked! Cookies and cupcakes were both so much fun to make for both our friends and the workers that have been in and out.

-Our indoor lanai flooded. Like flooded flooded. So much water. Our insurance ripped up the floors the same day we called them and has been pretty amazing.

-I chopped 10" off my hair the other day. I'll be donating it again and it is fun to have it light and flippy. 

(Can you hear how much I'm enjoying life again?)

My husband would say I'm painting too good of a photo with my words but honestly it is such a difference. Some days it isn't the best but it is still better.

I am SO appreciative to each and every one of you who prayed, encouraged and thought about me. Thank you from the top, middle and bottom of my heart.

Sunday, March 26, 2017

CRPS & Life Update

Hi everyone!

Out of bed and doing great


My set of medications (click here to see what I'm taking) are still doing their job. I'm having less nerve pain than I have had in the last 3 years and it has been wonderful! I've dropped the Memantine but am still taking the others.

I've been able to walk around more and get to the store a few times a week. I'm driving a few miles and it has opened up so much. I'm still eating healthy (fruit, veggies, seeds & nuts). I dropped the chicken and so I'm eating vegan right now. I really need to find a replacement to chicken that will keep me full. Any ideas? I'm thinking about volcano rice.

My next CRPS doctor appointment isn't until JUNE! I will need to get some blood work before then but that is still pretty darn amazing.

The anxiety and panic attacks have gotten better. I started having issues after Ketamine 14 months ago but it has gotten easier over time. I'm doing great during the day and seem to only have issues at night.

My side effects from the medication are stomach issues, feeling winded & dizzy, exhaustion and my mouth and lips still being really dry & cracked. However, a humidifier and some other things people have suggested have helped with my dry eye sockets & sinuses so that is a wonderful thing.

I'll be staying on these meds for at least another few months and then we may choose to decrease a few and see if the nerve pain comes back.

I have permanent nerve damage in my right toes but I've gotten use to the numbness and it doesn't hurt.

My husband & I are still loving Florida. It has been fun to get out more and enjoy the state from outside my bedroom. We went to the beach last week and we should be able to swim in the Gulf in about a month or so. It is regularly in the high 70s/low 80s and I'm excited for the humidity that summer brings.

It is amazing how much better life is when you aren't in pain.

My husband & I have been walking and have walked a mile three times. It still creates pain that puts me down for a day or so but it is a clunkier kind of pain that doesn't shoot fire through my nerves so as long as I stay off my legs, I'm okay. I'm gaining muscle mass again and have put on some weight. All great stuff.

My blood feels like it is carrying more oxygen to my limbs and feels like it is flowing better. Some days it feels a little too thin and I'm wiped and I get winded super easy so we (the doctor & I) are still playing with the Pentoxifylline. I really feel like this medication out of all of them is working the best.

Compared to where I was last year, the improvement has been amazing. Life changing.

Thank you for all the thoughts, prayers & encouragement!