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.
 

Day off

I own a daycare. A year ago I was trying to find a way to make the schedule work with the staff I had. I really didn't want to hire anyone new, yet being open 12 hours a day I was struggling. Then I came up with an idea, if everyone worked 10 hour days, I could make it work.
  I put the idea out to my staff, at first they weren't sure they wanted to work that long each day. So we decided we would try it for 6 months and see how it went. At the 6 month mark people LOVED working the 10 hour days and having a day off during the week. It also saved me because if someone had an appointment on a day that they weren't scheduled off they switched with someone who had that day off. This kept the daycare in ratio but also allowed people to take days off without using sick or vacation days.
   Thursday is my day off. I still get up early because I have to get my own children on the school bus. Usually soon after they are out the door I jump in the shower and start errands or chores around the house.
   Today I decided since last weekend was crazy and this coming weekend is pretty busy I was going to relax today. I got up and ordered the groceries for Walmart pick up. I also started laundry. I then worked on a puzzle for a bit. I did get some paper work done for work along with organizing both kids Boy Scout and Girl Scout agendas for the year, typing out their requirement lists with deadlines for us to work towards.
   I got to daycare as their buses were getting there. We then went to the Library. They both love to read and it was time to get new books. I love going to the library, the kids have gone enough they know where their favorite authors are. I allow them to browse, while I also browse for new books. According to our print out this week, we have saved $1000 by going to the library instead of buying the books.

   Before we were even out of the parking lot the children had grabbed their books and started reading.(This picture was taken while waiting for groceries, the car doesn't move until everyone has on their seat belts) We stopped on the way home to pick up the groceries and some prescriptions without even leaving the car. (What an AWESOME service!!)
   My pain was between a 5 and 7 depending on the hour and way I was moving/sitting today but I pretended it was a 4 and put on a cute top and necklace.

Tuesday

Today I woke up and pain was not my first thought. This is usually a good sign for me.
In fact I didn't take any ibuprofen until almost 2 pm today. Usually I'm taking it within minutes of getting up.
  Today however, at work within an hour of getting there I got news that sent my stress level up. This means that while my pain was under control today tomorrow will be a rough day. It always seems that the day to two days after a stressful day my pain is higher.

I run a daycare for 50 children and 12 staff. This requires a lot of movement on my part. I work with the infants, so that means being down on the floor with them as well as bending to pick up and put them down multiple times an hour. I love my job and wouldn't change it for the world, however it does make my pain worse. If a kid has a fussy day or needs more love, I put them on my hip. My hip is where the pain is, so an action like that will knock me out for an evening to a full day.

I also have two school age children. They are old enough to do things for themselves so it does make resting in the evening a little easier, however they are also old enough to be involved in scouts, soccer, swim and other social activities that take up a few nights a week. 

After today, my posts about pain are going to be intermixed with life with my business and kids.
While I want to document the pain and the struggles I work through on a daily basis, I also want to document the fun and love my life have.

PAIN-Shingles and beyond

I haven't blogged in over 2 years, but I would like to start again. This time while also documenting things going on with my family, I'm going to talk pain.

Hopefully this will help me deal as well as give others hope that they aren't alone.

March of 2015 I went to dinner, while at dinner I got a bad pain in my side. The pain increased as the night went on and I ended up in the ER. They thought my appendix was acting up but all tests came back fine so they sent me home.
Monday I went to the doctor pain was still horrible, she thought the same thing that it was my appendix and sent me back to the hospital. Again all test came back fine.
Wednesday I went back to the doctor that time I had about 10 spots running along the line that hurt. I was diagnosed with Shingles and sent home with medicine to help them go away.
The spots went away, however the pain never did. In fact the pain got worse.
I have tried every treatment, and theory to help lesson the pain. I tried chiropractor, toothpaste, fish oil, medicine, stretching and so so much more.
After about a year I went to a pain management doctor. He tried killing the nerve. I was the small percentage that instead of killing it, the nerve sensitivity was heightened. The doctor told me if I didn't want to go more invasive than that there was nothing he could do for me and dismissed me.
  After three years of pain and the crack down of opiods I went back to another pain management doctor. He tried an epidural. It didn't help. So he suggested a spinal cord stimulator.
   Since May I have been working on trying to get the stimulator. I had to have an MRI, see a physiologist, and try another medication. I went through all the steps, then my doctor changed names of clinic and had to get new insurance approval. That happened, we scheduled my surgery, then insurance came and denied it.
That is where we are right now. The doctor is fighting the insurance, however right now all I can do is wait and pray that the insurance changes their mind. 
So my blog will be about the daily battles I deal with to over come the pain.
I own my own business, I have two active children and an amazing husband.

When I wake up in the morning that is my first clue of how the day is going to go. If I wake up and the first thought in my head is WOW my side hurts, I know it is going to be a hard long day.

Today was one of those days. The second I opened my eyes the pain hit me like a ton of bricks. It was throbbing and shooting pain. I got in the shower and even the water of the shower hurt my side. I put on my loosest clothes and got ready for church.
  In church I always try to put a smile on my face, when people ask how I am I always say fine, it is too hard to describe the pain, also someone my age isn't supposed to be in that much pain. Today I did ask for prayers that insurance might change their mind.
After church I was supposed to go to the store to pick up items my business needed for the week. As I was driving the idea of lifting the items just made the pain even worse, so instead of going to the store I came home. I laid down on the couch. I knew I didn't have much time and I should get the store done yet I couldn't move. I laid there for 2 hours.
At that point I had to force myself up because both children are in scouts and today was Scout day at the local Corn Maze and we had to meet their troops there.
 Because the pain goes from my lower back and wraps around my side, pants are hard to wear so I wear lots of dresses and skirts.  This means I am walking through a corn maze with a dress on.
After 2 hours of the maze it was time to go to Girl Scout meeting, during the meeting all I could think about is going home and laying down.
As soon as I got home I went straight for my pain pills and ice pack. These are the only two things that help. The pain pills do nothing for the pain since the pain is nerve related and not muscle. However the pain pills help relax the tight muscles around the nerve and help my brain relax enough that I will be able to get a little sleep tonight.
  I will go to bed with an ice pack and hope when I wake up tomorrow my first thought isn't about pain. 

Kindergarten and Second Grade

Today Colin started Kindergarten. Up until about 3 weeks ago he was super excited, then he got nervous. We had meet the teacher night on Tuesday and he seemed to relax a little. Today he went to school and left with his teacher without any tears.
  I then got a call from the school nurse about 1pm. Colin was in the nurses office for the second time. This time he had thrown up in the hallway and was crying. I talked to the nurse for a minute and then she put him on the phone. He was crying. It took everything I had to not cry on the phone. I was able to stay strong and calm him down. I told him he would be okay, that there was only about an hour left of school and he would then get to come to daycare and see me.
   It was probably one of the harder things I have ever done as a mom. The mom in me wanted to run out the door and go pick him up and hug him. but the educator in me knew that he needed to stay at school or tomorrow would be worse.
   He was able to go the rest of the day and came to daycare on the bus. He came in and gave me the biggest hug ever. He told me that his teacher was nice but that he wasn't going back to school tomorrow.
   He has helped me pack his lunch for tomorrow, but we will see what the morning brings.


Alyssa started Second grade (WHERE DOES THE TIME GO?!?!) it is at the same school she was at last year (not the school Colin is at.) She had a fantastic first day. With her being in the gifted program it helps because it is the same group of kids from last year, only a new teacher. She also got off the bus and gave me a hug, but it was more a forced hug and she was off to go back to her classroom to be with her friends.

I knew Kindergarten was going to be harder for Colin than Alyssa but I didn't think today would end like it did. Hopefully things look up for him from here.

Where is Shannon?

I said I was going to start blogging more, yet I haven't.

Life is kind of crazy right now. I need to find myself a good balance between family, work, and life. Right now that isn't a good balance.

It is summer so we are spending time at the lake. Alyssa is learning to ski. Colin is trying but I think he might be a little young and not strong enough, though he has been known to prove me wrong before.

My shingles pain is still there and as strong as always making evenings rough after moving and working all day.

Chris and I have a weight loss challenge going on, He is winning right now but, I'm hoping that will all change soon. I have started working out again in a way to help me find myself and I think that will help pick up my weight loss.

Colin is almost ready for kindergarten.

All these probably deserve their own blog, but for now it is a start. :)

I graduated!

Well my excuse for not blogging much lately was because I was getting my masters. As of Sunday night that was over. SO my goal is one post a week.
Lets see if I can do it. :)

5 year old Interview

What is your favorite color? Blue

 What is your favorite toy?  All of my toys

What is your favorite fruit? Grapes

What is your favorite tv show? Spiderman

 What is your favorite thing to eat for lunch? Lunchables

 What is your favorite outfit? Don’t know

What is your favorite game?

 What is your favorite snack? Animal crackers

 What is your favorite animal? Cow

 What is your favorite song? Down by the River

 What is your favorite book? Smash, Crash

 Who is your best friend? Chase

 What is your favorite cereal?  All of them

 What is your favorite thing to do outside? Play

 What is your favorite drink?  Water and milk

 What is your favorite holiday?  Christmas

 What do you like to take to bed with you at night?  Stuffed animals

 What is your favorite thing to eat for breakfast?  Poptarts

 What do you want for dinner on your birthday?  Pancakes and Sausage

 What do you want to be when you grow up?  Where Daddy works

Masters Degree

I forgot one big thing in my update! I went back to school. I am now one and a half semesters into my Master's degree. I'm doing it all online through a school out of Chicago. I will graduate in summer of 2016. With it I will have a master's in Early Childhood. I already have my B.S. in Elm Education.

I take two classes a semester, but only one at a time. They are 8 weeks long. It has been hard to find the balance but I think I'm starting to get it. I do miss going to the gym but I know this is important too.

I had always figured I would get my master's but then when I stopped teaching I kind of thought that it wasn't worth it. But I found a scholarship that is paying for 90% of my schooling so it is a deal I can't pass up.

Kindergarten

Kindergarten has been tough on Alyssa's health. She has been sicker this year than she has in the last 5 years. The only year she was sicker was her first year of life.
The poor girl has gotten the flu, many many colds, and now a stomach bug. We have also had 3 ear infections.
I really thought with her being in daycare that she would of built up an immunity to some of these germs but it doesn't seem true.
It makes me so nervous for when Colin starts school. The one good thing is it doesn't seem that Alyssa is passing her germs on to him too much. He is still sick but never seems to have the same thing she has.

Today neither Chris or I could take off work so I set her up a bed and she has been watching movies while I work. I think we will make a trip to the walk in clinic after I get off.

Alyssa's Party

Alyssa had her party today. It was a make up and dress up party at a bounce house of all places. They took the upstairs and turned it into an awesome place to get their hair done, dress up, paint nails, walk a runway, and play.
9 girls were invited but only 7 showed up. They all got to pick an outfit to wear, along with shoes, purse, and accessories. They then got their hair styled and then face painted. They then played while the rest finished hair or got nails done. After everyone was done they got to walk a runway while the people talked about them.
Right before the runway I had another surprise up my sleeve and Elsa showed up. So she got to help them sing some songs from Frozen, walk the runway, and then after cake and presents read them a story.

When I asked Alyssa what her favorite part of the party was, she thought for a moment and then said EVERYTHING!

At bed tonight I made her wash her face but let her keep the hair stuff in. She said "Thank you for letting me keep my hair like this, you are the best".
I'm so glad she had so much fun and I think I smiled as big as she did during the party.

Life since July

Since I last posted not too much has changed besides Alyssa starting kindergarten. Which she seems to absolutely love.

Chris is still working for his same job and is close to home which is nice because I have been putting in long hours at the daycare so Chris picks the kids up and heads home to start dinner. I usually walk in the door about the time dinner is hitting the table.

Colin's health has been better. We haven't had any hospital visits since April and no steroids since July. He has been sick since January 2nd and can't seem to shake the cough and cold but he is in good spirits and happy so I can't complain too much. We spent from August to December going to weekly visits to a speech therapist to work on swallow and speech therapy. I think it really helped in strengthening his muscles in his mouth and throat.

Alyssa is a happy girl who is doing very well in school and becoming more grown up everyday.

As for me the daycare is still growing with more changes in the works and I can't wait to see where they all go.

Dear Alyssa #6

Dear Alyssa,

   Baby girl you are 6! I cannot believe you are that old! It seems like just yesterday you were a toddler. You are loving Kindergarten. Your teacher’s name is Mrs. Schuerer and you have a big class with 25 kids but you seem to be learning. Math seems to be your strongest subject right now but you are getting better every week with your reading. Right now you are reading on a level 3 but I think with a little more practice you will be moving up soon.

 You weigh about 50 lbs and are about 48 inches tall. Your favorite foods are anything breakfast, spaghetti, or fish sticks.  You are very independent and love to do everything for yourself. You get yourself dressed, buckle your carseat, and can even help make your own peanut butter and jelly sandwich. Last weekend you went upstairs to clean your room and when I came up you had made the bed, folded your blankets and arranged your stuffed animals. Then for two nights you wouldn’t sleep under your covers or with your blanket because you didn’t want to mess up your bed.

You love to laugh and have a smile on your face most of the time. You love your little brother to the moon and back and look forward to playing with him in the evening time. Your favorite game to play is a mixture of Rescue bot and Barbies.

On Saturday you are going to have your friend party and you can’t wait. We are doing a make-up/dress up party.  

Baby girl I can’t imagine my life without you. You make my life so much more interesting and fun! I love to talk to you and see your take and thoughts on the world.

I love you!

Love,

Mommy

Alyssa 6 year old Interview

What is your favorite color? Pink

 What is your favorite toy?  Barbies

What is your favorite fruit? Strawberries

What is your favorite tv show?  Frozen

 What is your favorite thing to eat for lunch? Spaghetti

 What is your favorite outfit? My dress that twirls like Anna’s

What is your favorite game? Frozen Trouble

 What is your favorite snack? White Cheese itz

 What is your favorite animal? Penguins

 What is your favorite song? Let it Go

 What is your favorite book? Junie B. Jones

 Who is your best friend? Lizzie and Madelyn

 What is your favorite cereal?  Frosted Mini Wheats

 What is your favorite thing to do outside?  Swing on the swings

 What is your favorite drink?  Orange Juice

 What is your favorite holiday?  Halloween and Christmas

 What do you like to take to bed with you at night? Just my Blanket

 What is your favorite thing to eat for breakfast?  Muffins

 What do you want for dinner on your birthday?  Spaghetti and salad and cake

 What do you want to be when you grow up?  I want to be an Artist and a D