Saturday, August 16, 2014

Trying out my new Dragon software

Hello everyone!

I decided to buy the new Dragon software. It is their 13th edition. QVC was selling it for about $80 with free shipping for two programs. I am typing this entire thing using my voice.

I am not sure how I feel about the software so far but will post a review soon. It is similar to talk-to-text on your smart phone.

Yesterday I went to the doctors. It was my weekly Friday appointment at my new doctor`s. We very much like him. He scraped the scar tissue on my knee and on my back. My back has some pain from the shingles last year but honestly it isn't bad. He also did electric stimulus (it hurts!) on my wrist and knee. He is working on my left side first since that is where most of the pain is.



I am feeling wonderful mentally and emotionally. Being off almost all of my medicine has helped my spirits. This week I am going from 12.5 mg of Ambien to 10 mg. I may even drop it a bit more if that goes well. So far the withdrawal symptoms from the decrease of Ambien have not been bad. Just a few bad dreams. My doctor said to take my time on decreasing this since it does help me sleep through the pain.



It does hurt to walk which I do not do often. I have a wheelchair and walker which are great. I use the walker around the house and the wheelchair when I go out. Tomorrow I have plans on attending church which will be the first time in MONTHS! 


My wrists and hands have also been hurting. Thankfully I haven't woken up with "claw hand" in weeks which is a wonderful blessing. Yes, the pain is there when I wake up. But I can move my hands which is great.

The new doctor wants me to sweat. However, It has been cold here in PA. Last night it was in the 30's! Okay, it was like 39...but still! It is AUGUST.

Today was the first day of sunshine in awhile and I took advantage of it. I laid in the sun (with sunscreen on) for a total of 4 hours. I sweat a lot which is wonderful. I hope the sun continues to shine. I am also enjoying our hammock and my Nook. We have wireless internet and so I can watch YouTube and read. While laying in the sun I enjoyed listening to my new Pandora channel: Be Thou My Vision. I am loving the old hymns right now. 

I hope everyone is having a wonderful weekend.

Wednesday, August 13, 2014

Blog Post

I don't have a fancy title for this post. I just couldn't think of anything honestly. Ha. 

My mind feels great and I am doing well mentally and emotionally. I am off my pain pills and my depression meds. I wasn't exactly depressed but my family doctor said that with chronic pain comes depression and put me on a low dose a few months ago. I have stepped it down and am now off of it.

Most of my days include atleast a few hours of getting outside and laying in the hammock with my Nook.


I am taking just one prescription medicine - a sleeping pill. I am hoping to step this down slowly since it also has withdrawal side effects. The sleeping pill does help put me to sleep and helps me sleep through the pain and so I cannot complain. It may take a few months but I am slowly going to try to wean myself off of this too. 


My body hurts. Some mornings I wake up and can type for a bit and I am glad of that. The last few days I have been using my walker. 

My days include devotions, Bible reading, lots of praying, reading and trying to sweat. I cannot hold a book but I can use my knuckle to turn pages on my Nook. 


QVC had a great deal on the Dragon software. TWO sets for just $80 plus free shipping. These retail for about $200 and sell for that on Amazon. I am going to try it for typing. There is a 30 day return policy on these. I may not be able to thrift, dress the mannequin or edit photos but this will help me type. I will keep you posted!

My doctor wants me to sweat as much as I can. I am currently using a heating pad but have a "U" pillow ordered from Amazon and will get it later today. The pillow is made of buckwheat which smells like popcorn and pancakes. I am not a sweat-er and it is chilly here in PA. Sweating is tough when you cannot walk or move too much.


There are baths filled with magnesium salts, electric stimulus sessions and eye exercises. I was blessed to have a friend's friend lend me a $2500 electric stimulus machine. Her daughter had the same condition as me for years and she said I could keep it for as long as I needed. I didn't even know this woman and she trusted me with such an expensive device!

The left side of my brain is very weak which is why most of the pain is on the left side. CRPS (RSD) weakens the nervous system which includes your brain. My right eye has turned inward to help "fix" my left side. There are a lot of eye exercises to help correct this and I have them downloaded on my Nook and my phone.


I went for 7 hours of tests and treatments this past Friday. One of the treatments included multiple sessions of breathing oxygen. Breathing is one of the things I can do without pain :)

Lidocaine patches help numb the areas of pain. I don't use them every day but I am thankful to have them. I sleep with them on my wrists, hands and left knee. They only numb the skin but it is a good distraction.

This was a photo of some of the swelling in my left knee at the beginning of the day, before the 7 hours of tests & treatments. You can imagine how swollen it was afterwards. I forgot to take a photo.

My doctor said to try kale and dark chocolate. It naturally helps with pain.

Dark chocolate is gross. So bitter! My awesome husband picked me up several kinds and the dark Hershey kisses were best. Yes, I know those don't really count as dark chocolate and have the most sugar.

I tried fresh kale, baked kale with olive oil & salt and kale with bacon. Kale is the absolutely most disgusting food ever. Unless kale is a miracle cure for CRPS (and it is not), there is no way I am eating this again. And the chocolate made my stomach sick because I cannot tolerate milk.
These have no milk but yet still make my stomach sick for some reason. And they aren't as yummy as Hershey's kisses. Ha.

My supplements also include magnesium, Kapp Arest and some kind of gross peppermint liquid called Nitric Balance. I am also taking vitamins. 


I go back to the doctor's on Friday. He is awesome. I write down all my questions and he answers them as he treats me. And...great news! Yesterday was the first day my stomach held food for the entire day. It seems to be settling down. I am going back to gluten-free since I now have thrush from all the wheat I was eating (chicken noodle soup and lots of crackers were my diet while my stomach was sick). Ha! So my diet will include lots of fruit, veggies, grilled chicken and nuts. My favorite meal is fresh spinach salad with carrots, strawberries, grilled chicken, raw almonds and a bit of vinegar. Yum!

We are getting a new roof! This is the "before" photo. Our shingles have been blowing off for years. We have no idea of how old the roof is but we are guessing it hasn't been replaced since the early 1990's. (Does anyone else think this should have been just 10 years ago? How is it 2014!?!) And...we are going with a metal roof. It is slightly more expensive (about 10% more in cost) but it will last so much longer. Most metal roofs have a life time warranty.

We had a wonderful strict Mennonite build our master suite and we are again using him for this project. He is also going to replace the gutters since we painted them white a few years ago. It will be easier to replace them than re-paint them. Especially since I cannot hold a paint brush right now.

When my father-in-law passed away in late June, we inherited a ton of stuff. Most of it got sold or given away. But some of the tools were kept since my hubby will use them. My husband is super organized and I am so thankful for that. On Tuesday he alphabetized the peg board. Yup, alphabetical order, starting with bolt cutters and brushes and ending with a window washer & yard stick. Don't ask how long this took him (okay...3 hours!!!).

And here is what the rest of the basement now looks like...Yikes! It will take weeks to finish but he is taking it one day at a time. I cannot do a thing except watch. I sit with my leg up and just spend time with him. I hate not doing anything but I am loving this time together. I am glad God used this disease to slow me down. I know He is working in my life and I am joyful for that. I am NOT thankful for the pain but I am thankful that I don't have a busy life right now.

 I have always been someone that counts down the time until the next "big thing". A month until vacation, 100 days until Christmas, etc. I look back on just a few months ago when my knee was bad and I wish I would have been more thankful that 'just' my knee hurt and not my arms, wrists and hands. And so I am trying to enjoy this time of my life being slow. I don't want to look back on this time when 'just' my knee, hands and wrists hurt. I can still do so much and I am thankful for that.
One thing I can do: Jamberry! I had a Jamberry Facebook party and earned a ton of free nail strips. They are basically stickers that you heat up. They have glue on the underside and the glue melts when you heat them. You stick them on, smooth them out and use a nail clipper to trim the excess. So easy!

Aren't they fun? My hands shake badly but even I can do these.

My father-in-law lived in an assisted living community the last few weeks of his life. My husband went back to sing, play guitar and play piano and put on a "show" for the residents last week. He sang old hymns and some old songs. My favorites included You Are My Sunshine and Roses are Red My Love (by Bobby Vinton).

The show became a big 45-minute sing along and the residents loved it. I sat beside Mildred who had dementia. She kept asking why she was there and how she got there. Mildred didn't remember almost anything but she remembered the songs and sang along. You have know idea of how this blessed me.

We also met a dear lady named Madeline. Madeline knew my father-in-law, Dean, from the early 1940's. She and Dean use to be "beaus" and went to the roller rink together. Dean even asked Madeline to marry her but they were only 16 and she said her dad would kill her. Dean then went to WWII. She remembers him coming back from WWII in his army uniform and skating after the war was over. What sweet memories!


I hope everyone is having a wonderful week!

Friday, August 8, 2014

Friday

I made it! It has been 15 days off Fentanyl and 11 off Percocet. I am feeling great mentally and emotionally.

Today I will be at the doctor's from 11am to atleast 5pm for tests and treatments. I was there two weeks ago for an evaluation. This is the doctor that said I had dystonia along with my RSD.

My knee is feeling okay. It hurts but I have been taking it easy. My wrists hurt quite a bit and the pain goes from my elbow to my fingertips. Sometimes they ache, sometimes it shoots through me.

I am excited to see what today will bring. God has truly given me peace and joy during this time.

Just over two weeks ago I was on 8 medications. I am now down to 2. One of those is at half the dose and the other is Ambien. I am hoping to stop the sleeping pills soon but they truly do help. They allow me to sleep through the pain.

I took Advil this morning because of cramps (stupid period) but have been taking almost no pain medicine - even OTC. I wanted to let my stomach settle a bit. That is probably the last of the withdrawal symptoms to leave me. My stomach gets stronger every day and I have been keeping some food in it.

I do not recommend stopping your narcotics without a doctor's advice and help. I do not recommend this as a diet of any kind. With that said, I am down 12 pounds. I am sure once I can keep food in my belly that I will gain some back. It has been a tough few weeks for my poor body.

Thanks for all your prayers. I will post again soon :)

Monday, August 4, 2014

Photos

Every day I am doing a bit better. My wrists hurt pretty bad but my knee isn't bad at all. And the good news is that I am going for my first all day treatment for dystonia & RSD on Friday. The doctor has really been great these past two weeks. We have been emailing which is SO unheard of for a doctor. 

This evening I am feeling up to posting some photos...

There are about a million ladies in our church having babies. I stocked up on adorable Carter's onesies awhile ago. I am going to add a book to each gift. This one got really good reviews on Amazon and so I ordered 8 books. Yup, lots of babies!

My husband has been taking care of the house for awhile now. About a month ago our steam mop broke. I haven't ordered a replacement yet. I do have a few on my Amazon wish list. He has been cleaning floors with this old school mop.

Something I did order from Amazon was a huge box of his favorite popcorn. I didn't realize that I purchased 12 FULL SIZE bags of popcorn. I cannot eat it because it is white cheddar and has milk. I'm sure he will make the sacrifice and eat it all.

All my candles being burned at the same time. Why???

Because some dumb person decided she wanted to try turmeric paste this week. It is suppose to be a miracle cure. Thanks Amazon ;) I don't make the best choices when I hurt and this was $11 straight in the garbage. Years ago when my mom asked what spices we kept in the house I had to answer "salt". I don't even think we have pepper.

WHO thought that she would like turmeric? Me.

I boiled it down with water. I consider this cooking. It made the entire house stink. It doesn't even look good! I got a spoonful in my mouth before gagging. And then I washed it down with Skittles and Powerade. Oh, I am super healthy. And I am sure that the little bit I accidentally swallowed will heal me completely (insert sarcasm).


This went straight into the garbage along with the little plastic container. I forgot to take a photo of the Pampered Chef white rubber spatula but I completely dyed it.

Maybe I can somehow tie dye a white shirt in Turmeric? I bet that would look really cool. Except I would probably smell forever.

Last night at 1 or 2am I was wide awake. This happens almost every night. My Ambien wears off and the pain sets in again. I decided to use my Jamberry nail strips to do my toe nails. I shake pretty bad and so I don't use nail polish too much. But these are so easy to use. These were FREE since I hosted a Facebook party for a friend. I got lots for free. Love these!

These. are. awesome. They have a bit of milk but I splurged. They are like the best candy bar ever. I haven't been able to keep anything in my stomach for 11 days. I have tried everything from crackers and chicken noodle soup to grilled chicken to raw spinach to Skittles. Nothing sticks.

My doctor said to just make sure I keep hydrating and eating. He said I could stop the gluten-free thing for now. I stopped it when I started having withdrawal symptoms anyway.

I had to cut the wrists on my sweatshirt this morning. They were bothering my wrists. I am so thankful I saved this old sweatshirt from the trash so many times. Cutting it and rolling the sleeves was no big deal. I have pinking sheers for some reason. I think they just magically showed up in my sewing box. I haven't the slightest idea of where I got these.

Thanks Verizon for this GIANT check which came this morning. The cost to send it was 48 cents and the check was for 3 cents. Why?!?

My husband has been taking care of me, cleaning and cooking and getting quotes for the roof. We have put off getting a new roof for years. Shingles blow off with every strong wind and then he goes on the roof to nail them back on.

This summer we will be selling my father-in-law's house and we decided to "splurge" and get a roof before we get leaks. Roofs are REALLY expensive! Thankfully we know an Amish/Mennonite guy (we haven't decided yet) who can do it for about half the price of Home Depot. He did a few jobs for us years ago and kind of freaked us out when he didn't wear shoes while using a saw on the gravel outside our home. Ouch.

He also doesn't have a phone. You have to call a main number and leave a message. And then you get a call back at a random time. Like 6am this morning. Thanks for getting back to us roofing guy.

I am part of a larger group of ebay sellers. Today I got two cards from them. How sweet was that!?!

Powerade tastes like Jell-O that hasn't made gel yet. I don't like it. I am drinking it but I don't like it.

Does anyone else have a baggie of medicine that they are no longer taking? No one will take this stuff back. My doctor said to bury the pills in cat litter. I refuse to buy cat litter to bury pills. I already spent $11 on turmeric. Hey...maybe I can bury them in turmeric?!?

My husband has been shopping and he brought me home pulled pork. I kind of kept putting it off since my stomach has been so weird lately. Tonight he had a church worship meeting and I heated some up. YUM! I am sure this isn't great for my stomach but I don't care. I haven't been this excited for food in awhile. Well, besides the Skittles. And the gluten-free chocolate filled things. Hehe.

Also - I have a question for everyone. My father-in-law passed away a month ago. We got sympathy cards. I have sent a "thank you" to anyone who sent something (like stamps...how awesome is that idea in a sympathy card and I am totally stealing it). I even sent them to people out of town mostly. But, then my hands got really bad. They hurt to write anything. Do I need to keep sending these? We have probably sent over 30 and still have a large pile left. Do you send "thank you" cards for sympathy cards? Please say no.

Okay...that is all. That was a lot of typing for me. Thanks for reading!

Saturday, August 2, 2014

Day 9 - Magic Day

A long time ago I was an egg donor for a wonderful family in Boston. Yes, that couple did have a baby boy but this story is about me. When the doctor went into to gather the eggs, they nicked part of me.  They didn't realize it.

After the egg donation, we went back to the hotel. I blacked out and my husband brought me to the ER. I was there for 3 days. I bled internally for 3 days. The Boston hospital missed the bleeding.

My husband and I flew back to PA. We didn't realize I was still bleeding. I felt miserable the entire time. He brought me to the local hospital the night we returned. The doctor gave me two choices: have surgery or go home and wait. He also didn't realize I was bleeding internally. 


Because I was in such pain, I chose surgery. It saved my life. 

I was in the hospital for a total of 10 days. They removed my fallopian tube and ovary. I went home after those 10 days and was completely exhausted. It hurt to breathe. I remember my mom trying to get me to eat a bit of toast. I remember sleeping on the couch and my husband sleeping on the floor next to me.

One of the things that stands out was a specialist that told me a day would come and I would start to feel better. He called it "magic day". He said it would come around that I felt more good than bad. It took me months to recover. But he was right. 

Today was magic day. No, I am not healing from a major surgery. I was "simply" withdrawing from pain meds. Today is day 9 off Fentanyl patches and day 5 off of Percocet.

I was prescribed these meds by my doctor. They were given to me for a legitimate condition that still exists. I would love to say that God healed me physically. That would not be true. 

Do I believe I was "sinning" by taking pain medicine? No. Do I believe that YOU should go cold turkey off your medicine? Absolutely not. I would not recommend this to anyone. 

I had a lot of help. There was the ER doctor on Monday and my family doctor on Tuesday. There was my husband who put me in the bath twice and watched me cry a lot. There were hundreds of people praying for me. 


And of course, most importantly, there is God. I am a Christian. It is not a religion to me. It is not being a "good person". It is not about going to church or reading the Bible. All of those things are great. But they are not going to get you to heaven. 

Being a Christian is a hard thing. Being a Christian is not always "magic day". Being a Christian doesn't mean that God will allow you to have a great job, a great car, a loving spouse or even good health. 

People starve every day. People die of terrible diseases every day. People are born into poverty every day. They don't choose it. I didn't choose to be born into my family. I didn't choose to be born into a country that doesn't beat you for worshiping God.

I have friends that are extremely poor. I have friends that have terrible ailments. I have friends that were abused. These are people. Would I love them to see God in me? Absolutely. But I must ask myself what I am doing to show God's love. Am I any different than anyone else? I pray so. 

Thank you to everyone who thought of me these last 9 days. I got so many emails and I appreciate every one. I hope to write back to each of you soon.

Thursday, July 31, 2014

Day 7

Today is day 7 without Fentanyl and day 3 without Percocet. Actually, I guess I have crossed over into day 4 without Percocet. 

I cannot believe how miserable this is. Truly. Yikes. 

We went to my family doctor yesterday. My family doctor is incredible. We are blessed to have him. He supports me going off narcotics. 

Today I woke up with more nausea. Despite taking anti-nausea prescription meds, I couldn't keep anything in my stomach. My awesome, incredible husband called the family doctor and said how bad I was still doing. The doctor called me in a prescription for a Clonidine tablet. The hubby picked it up along with mini plain bagels, Popsicles and a few other bland foods. I took the Clonidine tablet an hour ago. I believe it is helping with some of the withdrawal symptoms. 

Clonidine is a prescription to usually help with high blood pressure but it is also used to help with withdrawal symptoms.

Some of my symptoms over the last week have been: 

-Depression/sadness
-Weeping/crying
-Anxiety
-Exhaustion
-Yawning
-Major chills
-Sneezing
-My skin (especially palms) turning an orange color - this one was quite the surprise
-Dizziness
-Not keeping anything in my stomach (I won't gross anyone out here)
-Shakiness
-I am sure there is more but I am too tired to type


I took two Advil to help with the RSD pain earlier today. There is no plan here. I am truly winging this.

Tuesday, July 29, 2014

Withdrawal & the emergency room

I have been going through a drug withdrawal for the last 5 days. I took three weeks of Fentanyl patches which were given to me by my pain doctor for my RSD. Three weeks. That is all.

I had my hubby rip off the last patch on Thursday and then realized late Friday what a trial this would be. I am so thankful that God has allowed me to be strong. Well, I guess I haven't been strong. It is truly His strength.

During the first 4 days of the withdrawal, I had been taking 1/2 Percocet to get me through the worst of the withdrawal symptoms. They didn't do much but they did help with the RSD pain and a bit of the sadness.

Yesterday I decided to stop the Percocet. Now, I didn't have to do that. I also had a script from my doctor for Percocet and could take up to 4 pills a day. I was only taking about 2 overall.

But I am ready to go back to feeling like myself. Even if that "self" is someone who has RSD pain, I don't want to be the person who has to take drugs their entire life.

Please know I appreciate each and every email from my readers. I have been praying for those who have asked for prayer. The Lord and I have had some major prayer time lately, especially around 4am.

I went to the emergency room this morning after I felt even worse. It turns out the doctor who treated me in the ER knew my family doctor. Let us call my family doctor Dr. Guy. Dr. Guy has a practice with another doctor. We will call her Dr. Gal. Well, my ER doctor was Dr. Gal's husband.

Thankfully he knew the sheer awfulness of withdrawal. He said I have another three to six days of feeling like I may die. But I won't. He said I will make it out of all of this fine. He took blood, gave me lots of fluids, something for the nausea and gave me a medicine to calm down the worst of the symptoms. Hopefully they will help.

When we got home, I was able to sleep for an hour. And then my awesome hubby made me a bit of chicken soup. I haven't been able to keep anything down so I have to go slow.

Please continue to pray for me. I have shut down my ebay store and am so glad I don't have to be concerned with that.

Sunday, July 27, 2014

More soon

I promise I will try to blog more this coming week. 

I am just finishing day 3 of a Fentanyl withdrawal. I had no idea it would be this bad. For those of you who have detoxed from any kind of drug addiction, you are strong! Wow. 

I only took Fentanyl for about 3 weeks. I decided to take off my last patch Thursday evening. I didn't feel it was helping with my pain. 

I called my doctor's office Friday morning to tell them I would not be picking up my prescription for the higher dose of Fentanyl since I had stopped it. The doctor was off and wouldn't be back to Monday. But the nurse would let him know.

No one told me this would be tough. No one told me I would feel like I was dying with the worst flu of my life. And I thankfully didn't google it until I was done with day 1. I may not have tried this cold turkey. They usually step you down slowly.


One of my church friends also went through a Fentanyl withdrawal after a major surgery. She also said it was one of the hardest things she has ever done. She said it takes about 6 days but it gets better on day 4. I just keep telling myself to get through the next hour, and then the next. 

More soon. On the plus side, I now have a lot of time for praying. So if anyone wants me to pray for them, let me know. You are welcome to email me personally: fbc@inbox.com.

Friday, July 25, 2014

Quick update

My husband and I went to yet another doctor today. He is a Christian and is HIGHLY recommended. He took an hour with us and told me that in addition to my RSD I have something called Dystonia. He seems like a truly wonderful doctor.

I will be there all day next Friday for my next treatment. All day.

On another note, I am weaning myself off the Fentanyl patches. My pain doctor wanted to increase them again and I didn't think they were helping. This is going to be a tough weekend. Especially since my awesome husband has two band gigs and three church services.

Saturday, July 19, 2014

Update

Hi everyone! Today is the first day I have felt up to blogging. It has been a tough week. 

My RSD has been really bad. We had my father-in-law's memorial, two doctor's appointments and four chiropractor's appointments since last Friday. All week my wrists and hands hurt too much to type. The doctor gave me a stronger pain medicine and I woke up with a bit less pain today. It still hurts but I did want to blog a bit. 

My left knee has RSD and you can see the left leg is smaller than my right.


The RSD is making my body shake. The Lyrica has calmed that down some and I am thankful to be taking it. 

These thoughts and pictures are in no particular order. 


I made my own bed! Isn't it pretty?
I am loving these silk pillowcases. My husband "stole" one and is using it on his bed as well.

This is my new medication. It is a patch that contains pain medicine. I am up to 50mcg which is making me somewhat nauseous and lightheaded but it is helping with the pain.
I have tried a lot of things to distract myself from the pain this week including doing my nails. The bright pink color was sent to me from one of my readers. Thanks Jen!

My legs get cold and so I need to wear socks. But walking around the house without shoes kind of hurts. And so I look like this. Ha.

My ebay inventory is down to just 7 bins and most of those aren't full. I haven't been able to list in awhile.
My doctor's office has this gorgeous original Fiestaware. Isn't it stunning?

The headstone of my father-in-law & mother-in-law.

We visited the grave where my mother-in-law was buried and sprinkled my father-in-law's ashes there this week.


This is my new bed. Obviously I have sheets over this pattern. But the other night I woke up and had swirls imprinted on my arms. I must have been sleeping pretty hard.



This week includes two doctor's appointments including one with a new doctor. I am hoping to have the pain medicine work. The RSD is now in my left knee, back, both wrists and hands and possibly my right hip. There is no real cure for RSD but it is possible to have it go into remission. And of course God could heal it which is what we are praying for. 

If I am feeling well enough an ebay post will be written this week. Thanks!