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!

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!

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.

Home

My fourth and last Calmare treatment was yesterday. 

It is good to be home. We hit the northern tip of the hurricane but we made it home just fine. The rain finally stopped and the sun shined it's rays down. 

Does this cloud look like a baby elephant?

My knee is still bothering me and I will continue to rest this week. It is always a good thing to rest. My RSD doctor recommended taking vitamin B, vitamin D and applying magnesium oil. I was already taking the vitamins (along with a TON of other ones) and just purchased the oil on Amazon. 

I have an acupuncturist appointment this coming week. I'm usually pretty good with needles and am not worried about them. We are pretty sure the RSD is spreading. My feet, arms and hands all tingle on a daily basis now. I also have an appointment at my pain clinic in town. Please pray they won't just throw pain medicine at me but will actually listen. 

I hope everyone has a wonderful and Happy Fourth of July. Thank you for all who have fought for our freedom. 

Some of the cookies I made today. This batch is going to a friend.

 

Calmare Part 2

My husband and I made the choice to come to New Jersey this week for my Calmare treatments. My father-in-law passed away Sunday morning and all the plans were in place for his memorial service years ago. So Monday we made the 5 hour trip to the Days Inn, dropped off our stuff and made it to the first treatment with plenty of time to spare. 

Calmare is an FDA cleared machine that is being used for RSD and CRPS patients. There are several doctors using the treatment throughout the US. The closest to us is in NJ. My doctor has probably seen more RSD patients than any other in the US and knows quite a bit about the condition.

My first set of 10 treatments was in late March/early April. My pain level did come down some and so I wanted to give it another try. Most patients have to come back for "booster treatments". I have four scheduled this week, one a day for four consecutive days. I am half way there. 

The machine feels absolutely wonderful. I cried on Monday when I was hooked up. You don't realize how much pain you are having until it is instantly gone. The treatment is for 35 minutes and the pain relief lasts about an hour afterwards. The hope is that it will last longer and longer as the week goes on. If you want to read more about my first experience, click HERE.