The list

The list is starting to be made. What can I give up and what will I absolutely refuse to give up.

It is still hard to make this list because I don't want to give up hope that one day I will be better. I was hoping after my last session the pain would be less like it was the day after session number 2. It was not near as low as it was that day. I will say it was lower on Friday and Saturday, and was better than it normally is when I have a cold and weather change but wasn't as good as I had hoped.

This weekend was pretty relaxed. On Saturday we only had two things going on and on Sunday we only had 3 activities we needed to attend.

On Saturday I needed to do some baking for the party we were having on Sunday, and I wanted to make a soup that needed to simmer on the stove for a few hours for dinner. I worked on my feet in the kitchen from 1 to 3. At 3 I was thinking about cleaning the floors and some light house keeping stuff, but instead I sat down and rested for an hour before it was time for the last push for dinner.

I think that hour of resting did help me push through for the night because Alyssa and I had an event to attend at 7 and I knew that I would be pushing my medicine back so that I was more focused for the event.

My list
1. I don't want to give up grocery shopping, but I will not carry all the bags in with one load. I will make more trips with smaller loads so that I don't strain the side.

2. I will do laundry but fold it in the laundry room, saving me from carrying the basket into another room. When I fold in the laundry room I can then grab laundry for each family member on their own, or the family member can come in and put their own clothes away.

3. I will take breaks on the weekend. A dirty floor will be there now and in 4 hours. By working in shorter bursts with breaks I should be able to keep things clean without working straight for a few hours.

4. At work I'm going to try to take more breaks as well. Instead of trying to push through I'm going to ask for 5 to 10 minutes every 2 hours or so to sit and breath, or even lay down if possible.

5. I am going to buy laundry baskets on wheels so that I can get laundry in and out of my car without having to ask for help.

6. Don't beat myself up if all paper work doesn't get done on a certain day. There is always the next day, or at home where I can sit.

I'm sure there will be many more items I add to the list but that is my start.

LENS therapy

So my newest adventure is trying a procedure called LENS therapy. It is where we put 3 electrodes on the nerve that is damaged and send waves into the nerve to try to calm it down. The device is hooked up to a computer and you can see the waves run across the computer screen. It looks like a heartbeat monitor. You send the waves through in 15 second increments and only do between 8 to 10 times.
After the first one I saw little change, after the second one the nerve was really upset that afternoon and evening but the next day I had the best day I had in months.
I had another one done last night. Once again last night the nerve was upset and had spasms and I was in a fair amount of pain. 
This morning while the pain isn't as good as it was last Friday I do feel better than I did before the procedure. Last time the good feeling only lasted about 24 hours. I am hoping this time it might last a little longer.
the research says that this procedure needs to be done between 8 and 20 times, but after that it should be long term.
I am really hoping that maybe I have a few good days ahead, but I have decided I'm not going to keep waiting and hoping.

This weekend I am going to sit down and make a list of the things that I absolutely refuse to give up and the things that I can give up to help calm my life down.
In other words I'm going to find a new normal that I'm happy with instead of pushing myself for better and then being disappointed when it doesn't happen.

I'm tired of my kids worrying if I will make it to their activities because my pain is so high. Last night my daughter told me that she wanted me to attend an event with her on Saturday night, but then said "Well mom, if your pain is too high I will be ok if Dad takes me". While she was being super sweet it broke my heart. I need to find a way that I can do the important things and cut back on the other things so I have the strength.

Living with Chronic pain

So I'm going to change this blog up. Instead of complaining about my pain on Facebook, I'm going to blog about it.
  I'm hoping by blogging about it, one I don't wear my friends out with my complaints and two maybe find others that might be having the same struggles that I have.

To start I need to start with my story.

Almost 4 years ago, it was a Sunday night and my family went out to dinner with my in laws. During the dinner I got a sharp, strong pain in my right side. I made it through dinner and we came home. As the evening went on the pain continued to get worse. Finally I told my husband I needed to go to the hospital because I thought my appendix was going to burst.
At the hospital they couldn't find anything wrong with me and sent me home with some pain killers. The pain continued to get worse and I went to my doctor on that Monday. She looked me over and agreed with me that something was probably wrong with my appendix because of the sever pain. She sent me straight back to the hospital. Once again they did a CT scan and found nothing wrong. They told me it was probably a ruptured cyst and that I would be better in a few days. They gave me more pain killers and sent me home.

Wednesday the pain is still so incredible that I can barely move and I go back to my doctor. She looks at my side, sees I have a few small red bumps. She diagnoses me with Shingles, gives me an anti viral and says I should be better in a few weeks.

Well the rash clears up, but the pain never goes away. I am diagnosed with PHN and told the pain should go away in about six months. So we try a Gabapentin to try to ease the pain. We try different doses, change up the times of day I took it, this goes on for about 7 months. While some days are better than others I'm still in tremendous pain. The medicine makes me groggy and unfocused. We are now past the 6 month mark and so the doctor sends me on.

I get referred to a pain management doctor. He changes me to Lyrica. This at first seems to help but my body adjusts very quickly to it and I have to up the dose. While on the Lyrica we try an epidural. It worked for 3 hours and then wore off and pain came back stronger. So then we try a ablation of the nerve that is damaged. I am in the small percentage that makes the nerve more sensitive instead of killing it. So we up my Lyrica more. This causes major depression issues and so I take myself off the medicine cold turkey. This makes my pain and moods crazy for about 3 weeks. This whole process takes another 6 months. At this point the pain doctor says there is nothing more he can do for me and dismisses me from his care.

I go back to my general doctor, we try a few antidepressants, and a few pain killers. All help slightly but not enough that I can wear normal pants, sleep on my right side or work out.  We try this for about a year and a half. (at this point I have now be in constant pain for 2 years)

We then decide to try another pain doctor. With this doctor we try another round of anti seizure  drugs that do absolutely nothing. We then try another epidural that does nothing. They then say the have the cure!! I need a spinal cord stimulator to send shock waves to the nerve to mess up the signal to the brain. They are confident that this will work and I will be able to wear normal pants, sleep on my side and work out.
There were many steps you have to take to get a spinal cord stimulator and I go through all of them, but it takes awhile. Finally I have done everything. I set up my appointment for the trail. 2 days before the trail I'm told insurance said no, and they have to fight it.
2 months later insurance is a hard no. Doctors tell me to change insurance, so I do. We try a new insurance. Once again the answer is NO. This is now end of year 3 almost to year 4.

I got the final NO yesterday. So now I have to figure out what I am going to do.
This blog is going to be my journey of accepting the pain instead of trying to ignore it, and how I learn to let go of the dreams I have held onto for the last 4 years.

Date Night and Weekend activites

Yesterday Grandma and Grandpa took the kids for the evening. The weather was super nice and so we decided to take a drive up to Grafton and enjoy the weather and the river. We stopped at the loading dock for some drinks and nachos. We then went to the Grafton Winery for the sunset, drinks and dinner.
   While at dinner I was taking some pictures of the sunset and a lady came up to us and told us what a cute couple we were and asked to take our pictures for us.
   It was a really nice evening and one that I think Chris and I both needed. 


Before that we had Colin's last soccer game of the season. He has grown so much as a player this season. He has decided that he really likes to play defender. He has a great long kick and really good arm to throw the ball in.
 Alyssa is happy that the season is over as she didn't enjoy going to his games however she is a great big sister and would go to each game and even some practices to go for a run with Chris.

This weekend we also carved our pumpkins for Halloween. Last weekend we were able to go to a friends house and came home with 27 pumpkins so we had a nice selection to pick from for carving. We even allowed Alyssa to carve her own this year. At one point I did have to walk away because she was making me nervous but she did a great job and parts that needed help Chris was able to help her with .
Colin drew the face he wanted on the pumpkin and Chris carved it for him. I found a design online that I liked and printed it out to carve since I'm not good at drawing.
 

21 years

21 years ago today I went to a high school football game to flirt with a cute guy I had been talking to. The conversation was super awkward, however after the game we went had pizza and played mini golf.
15 years ago today that same cute guy asked me to marry him.
Our life has had many ups, downs, and middle of the roads. He has stood by my side through all of it.
We have been together through my parents divorce, both of us finishing college after we got married, me struggling with my job, me starting my own business, finishing my masters, having a very sick child and chronic pain.  Life isn't always easy and there are time we get into a rut or have some pretty yucky fights.
  However I feel that because our relationship was long distance for a good part of 5 years we have learned how to communicate better than others.
  For me it is also the reminders of the love we have for each other around the house. We have a picture from our early dating years lining our steps. On the mirror on our dresser we have an index card that lists what we admire about the other person.
 Our relationship isn't perfect, and we have learned it takes work. It is work that is worth it to have your best friend by your side helping raise the family that we have always dreamed about.

Swimming

Alyssa has decided she wanted to do swimming lessons again this fall. She is already a pretty good swimmer, however her strokes needed some work. She has thought about joining a swim team and I told her before she joined a team I wanted her strokes stronger.
  The first class she walked away angry and said she didn't want to go back. The second lesson she remembered her goggles and did much better.
   She is now to the point that she looks forward to swim. Her strokes are getting stronger and she is getting good at diving off the diving blocks.
   She has another 8 weeks of class. At that point she will decide if she is done with swim or if she wants to move up lessons to one that will get her even more ready for the swim team.

Weekends

Before kids weekends were a time to run errands and relax. Once I had kids weekends became busier, once the children got involved in activities they got super crazy.
  This weekend has been a busy one, first there was a car seat check on Saturday morning, I went straight from the check to Sam's Club for the items the daycare needed for the month.
   After Sam's Club it was off to sell popcorn for Boy Scouts in front of Lowe's for 2 hours.
   Sunday was Church, selling popcorn, soccer game, and then home for dinner. After dinner we have to fit in cello practice, homework, spelling practice as well as some work for Girl Scouts and Boy Scouts.
   Then it is time for bed and the week to start again. During the week we have two soccer practices, swim lesson, and Boy Scout meetings.
  With all the things that we have going on it makes me even more grateful for my Thursday's off. I am able to run the weekend errands, giving us a few extra free minutes on the weekend.
    I love that my children are involved in activities, it helps them make friends, keeps them active and mentally strong. Over the years the children have tried many things, some only last a season or school year, others we repeat year after year.