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: 

-Major chills
-My skin (especially palms) turning an orange color - this one was quite the surprise
-Not keeping anything in my stomach (I won't gross anyone out here)
-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:

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


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!

Friday, July 11, 2014

Updates & Photo Overload

This post is going to be a mishmash of everything. It is long so feel free to skip it :)

My RSD has gotten worse. It started in my left knee and has now moved to my back, arms, wrists and hands. I have been in quite a bit of pain lately. So much so that I haven't been on the computer a lot due to the wrist pain. It hurts to type this. 

We found a doctor close by who uses ultrasounds, a TENs unit and laser acupuncture. I went Wednesday and have another appointment today.

The doctor said to wear wrist braces to help compress the nerves. I have two larger braces and two smaller braces. I have one of each on in this photo.

And after fighting it for awhile, I finally went gluten-free. I'm on day 3. I was already dairy-free. We stopped at TJ Maxx after the doctor's appointment Wednesday and I picked up a ton of snacks. I'm also eating raw spinach, strawberries, carrots and grilled chicken. 

My life is truly blessed. I know God is using the RSD for His good. I have people all over the world praying for me - Spain, India, Ethiopia, Tanzania and of course here in the US. 

I am not sure why I have RSD or if it will ever go into remission. But I have great doctors who are trying to help and an amazing husband. 

That same husband said it was time to get an adjustable bed. I use to sleep amazingly well. About 9-10 hours a night. Now I sleep an hour and wake up in sweat. I'm usually up from 1am to 4am in pain. Then I take a sleeping pill and get a few more hours of sleep. It is not fun. I have to do wash every morning from all the bedding and clothing I sweat through. 

Here is my "old" bed which was purchased just a few years ago. It is a basic memory foam but it was getting hard to get up from it. After buying the new bed, we listed this on Craiglist and without a half hour, it was sold. We delivered it the next day to a single mom of a disabled 10 year old girl named Chloe. Chloe was so excited with her new bed. We also included 5 sets of sheets, a heated mattress pad, a down mattress cover and a bunch of other stuff. The mom called me that night and left a message saying how happy her daughter was with her bed and how she appreciated everything.

And now the story of the new bed. We stopped at the first mattress store and was told that an adjustable bed was going to be about $6,000. Yikes. We quickly left. 

We left that store and we were driving to another mattress store and my husband suddenly pulled in by a dumpster. LOL. We weren't even close to the mattress store we had in mind. 

He said that he noticed a store and wanted to check it out before I got out of the car. (Getting out/in of the car is a major undertaking since I now have a wheelchair.)

He jogged back and told me that it was going to be a "God moment". I got out of the car, went around the front of the building and was greeted by the owner. She told us that they leased the space and were now moving out of the building. The building was being sold to a medical company. They needed to sell as much as possible.

And...they had several choices of adjustable beds! After trying out almost every bed in the store, I knew what I wanted. I then found out that I wanted the most expensive bed in this store. Oops. 


The lady gave us a great deal. My adjustable frame/boxspring, mattress, two pairs of sheets and delivery cost less than 1/3 of the first store! Plus, they would deliver it THAT NIGHT! In less than 4 hours of entering the store, I would have a new mattress in my room. 


Isn't it gorgeous? I'm in love with my new bed. My favorite feature is the massage mode. I didn't even know there were beds that did this! Plus, it is much higher off the ground which allows me to roll off the bed instead of standing up and hurting my knee.

 The owner gave me two sets of sheets. She only had gray and ivory and I took one of each. The gray color worked perfectly in my room! 

The next day I found a white Ralph Lauren bed skirt on clearance for $20. It was king sized and so I just cut out the middle, tucked it into the boxspring and it works perfectly.

My husband's 91 year old aunt called me this week. Her cousin had chronic back pain and a doctor in Pittsburgh was able to help her. I called the doctor and was told to send in my MRIs, medical paperwork and a write up of my RSD. They will review it this Monday and call me on Tuesday if the doctor takes my case. A lot of doctor's don't want to work with RSD patients since there is no cure.

Instead of just sending everything in a plain envelope, I took the time to include my photo and wrap the packet in tissue paper. I wanted the doctor to remember me.

Later today we will be having a memorial for my father-in-law who passed away two weeks ago. Dean was 88 years old and was ready to go "home". We are at peace knowing he is in heaven. Instead of a funeral, we are doing a memorial celebration. 

I made up several photo collages of the barns Dean made over the years. These will be hung in the church basement where we are having the reception party after the service. 

 Other photos will be placed in the middle of the tables as centerpieces. 

My husband & his father. I believe this was taken in the early 1990s.

My husband as a child. He was just one years old here! He seems rather big for a one year old.

My father-in-law, Dean, is on the far left.

Another of my husband. How cute is he?!?

My husband and his dad posing for the camera

During the memorial service we will be having questions and prizes. We wanted to do something different. The prizes will include some of Dean's favorite things: Oreos, peanut butter cookies, screwdrivers with screws, a Bible, several handmade hammers (made by my hubby), more candy and ice cream scoops.

Yesterday I was feeling pretty miserable. I didn't sleep well and had two doctor's appointments. I knew I was in for a long day. 

The mailman delivered the mail just 5 minutes before we had to leave. There was a large box. I wasn't expecting anything. I opened it up and I still didn't know what it was.

Then I read the letter. One of my blog readers, Jen, sent me a gift! Actually, several amazing gifts. She read my blog and took her family on vacation to one of my favorite places on earth - Anna Maria Island. As a thank you, she sent me this incredible box. 

THANK YOU Jen! Taking the time to write to me and send me something touches my heart. You are an amazing person. Please know YOU cheered me up yesterday when I needed it. We already used the water bottle. Everything is perfect.

Jen sent a fun printed Thirty One brand tote bag which completely matches my home and my wardrobe, a water bottle which doesn't spill when tipped over, several packs of baking cups, three OPI nail polishes, a cross stretch bracelet and several notebooks. I have no idea of how a "stranger" knows me so well. It was like we were best friends for years. Jen, you picked out the perfect gifts! Thank you again.

 Also this week (I told you this was going to be long!), I spent time in the hammock. I cannot stay in one position for long but it was the perfect evening.

I love Bob Ross! When I am awake in the middle of the night, I turn on the TV to distract myself from the pain. Bob keeps me company. His voice is soothing. 

Look at the book I found this week. I almost got it but I held myself back. Instead I took a photo and texted my sister.

And lastly, a haircut! I have been cutting my own hair for over a year. I didn't have the energy to go and almost cancelled. But I really wanted something to make myself feel better. My hair dresser trimmed it and then thinned it out quite a bit. Now I can wear it on the top of my head without a headache. Woo-hoo!

My doctor yesterday prescribed two new medicines for me. One is to help with nerve pain and is used by a lot of RSD patients. The other is a fetanyl patch. This will allow me to stop taking oral pain medicine and is stronger than my current pain regime. Please keep me in your prayers as I adjust to the new meds. 

This was a lot of typing and it took me several hours. I truly appreciate all the prayers and thoughts that you have sent. I may step away from my blog for a few days to let my wrists have a change to hopefully get better. Thank you to all my readers!

Monday, July 7, 2014

12 Years of Marriage

Yesterday my husband and I celebrated 12 years of being married. Those 12 years have flown by. I cannot even express how much I love this man. 

I woke up yesterday to a fun "princess" balloon and card. 

My husband and I don't give presents for holidays. However, we normally do pick out a big item for our house or put that money towards a vacation. This week we are headed to the local mattress store to look at a new bed for me.

Yes, my husband and I sleep in separate beds. I realize that will be odd for most people to read. But it works for us. It started when I worked at a bakery and my husband worked overnight at a youth detention center. We were on completely different schedules. We were sleeping in the same bed but at completely different times. When we moved to new jobs, it was hard to get use to the movement of someone else.

And 12 years later, it is still working for us. It makes waking up feel special. I look forward to seeing my husband every morning and he would say the same thing about me. We take time almost every morning to catch up on the couch while I rub his head. It is a little thing but I love our time together. 

All of that to explain that my current bed isn't working. My RSD is spreading and I have pain in my hands, wrists, back and legs. I have upped my vitamins and have ordered magnesium oil and a magnesium bath on Amazon. Those are suppose to help with RSD pain. 

I am hoping an adjustable bed will help with some of that pain. This week I have my first acupuncturist appointment and a follow-up at my pain clinic.

In addition to those two, we have a memorial for my father-in-law on Friday.

There is a great story called "The Story of Spoons". I cannot post it here since it is copyrighted. However, you can easily find it on Google.

Basically it tells the story of a woman having 10 spoons at the beginning of the day. Waking up takes one spoon, showering takes one spoon, eating breakfast takes another spoon, etc.

By mid-day, you only have a spoon or two left. You have to ration these. I read this story and started tearing up. It describes exactly what I go through every day.

I am trying to be real on this blog. I have so many things to be thankful for. I don't want to sound depressed because I have a blessed life and I know God is going to use this silly pain for His good. But I do want to post my joys as well as my pains.

I hope everyone has a great day.