Living with Chronic Pain...

It's hard to know what to say. We are struggling. Some days are tough to get through. Some days are not so tough. Mostly I just feel helpless.

Bob has been through test after test after test, treatment after treatment, after treatment. The doctors are scratching their heads at the results. Nothing is really coming back with anything that is explaining the debilitating pain that he is in daily. The only real evidence is that he has eleven damaged disks in his back which were not giving him trouble till he started physical therapy last Fall. It doesn't explain the pain he experiences day to day in other places for the last three and a half years.

This last treatment they tried was to see if they could do a nerve ablation. In order to do that, they injected steroid shots in the area where they thought would be the nerves that were giving him the most trouble. It didn't work as the doctors suspected since the previous steroid shot treatment didn't work earlier this year.

From what we understand at this point is that what the doctors are suspecting is that when Bob had his gall bladder surgery, it disrupted his nervous system for whatever reason and now it is just misfiring. They see this in some people who have had surgery. It leaves them in debilitating pain. You just don't know how your body is going to react to a surgery.

This debilitating chronic pain could morph into a fibromyalgia state which we've kind of seen. His pain started in the gall bladder area and ran along that nerve that runs across the bottom of your rib cage to pain in his back, pain in his arms, pain in his sides. It's just pain....awful, awful pain. He wakes with pain, sleeps (when he can) with pain, eats with pain, lives with pain. It never ever goes away.

The deeply disappointing news is that there is no cure for it. For Bob, this means a life of pain management. We knew it could be a possibility but still held onto hope that there would be something they could do to fix it so that he could have some relief. It is a devastating blow to hear the reality that that is not going to be the case. That for the rest of his life we are going to be living with this. I say 'we' because this doesn't just affect him, it affects our whole family.

It affects how we start our day, how we do things, how we go places, how we go to bed for the night, it affects everything and every moment of our day as a family. It is hard for people to understand as it isn't something you can see until it builds up to a debilitating level which it does throughout the day based on his activity level or just because. Sometimes he crawls into the house after being somewhere because I can't carry him. Sometimes, he can't cut up his food, pour his coffee or take a shower. It's a very humiliating state to be in.

In spite of our recent eviction notice, our recent denial of disability for the second time, and facing the recent reality that this isn't curable, we are holding onto God, the One who created our bodies and knows our every pain. I am holding on to the promise that He will restore the years the locusts have eaten (Joel 2:25) that He is a strong tower (Provers 18:10) and He will provide what we need (Matthew 6:25).

Don't get me wrong, we've all experienced major frustration, deep disappointment and even anger. I've thrown my own set of temper tantrums and experienced doubt. Then I've had to quiet my soul and ask for forgiveness. God knows all of our thoughts even before we know them and yet, He still loves me, He accepts me for who I am and is deeply concerned about me.

I have to remember that His ultimate purpose in all of these trials is for my good and His glory. Not the kind of good I think of because to me that is all about my comfort here on this earth. His kind of good is all about the state of my heart spiritually. We are suppose to be becoming more like Him, less like the selfish me along with my faith being developed through tough times (James 1:2-4).

I am so thankful for the whispers of encouragement He sends through His people, for His unconditional love, and knowing that I don't have to try to 'do' this on my own. He promises to never leave or forsake us (Hebrews 13:5).

A Day Of Learning

We recently took a trip to the zoo. This takes a bit of planning these days to do things like this especially with a crew of this size, six kids, two adults, stroller, diaper bag, cooler, etc. One wonders if maybe they should put the car top carrier on for such an occasion.

Upon arriving at the zoo, we noticed a sign for members only pointing to a special west entrance for just those special people. We thought it would be an excellent idea to use this entrance as there weren't as many people and you could park really close making it easier for Bob to get to.
One of the requirements for us to enjoy our time at the zoo was to get a scooter for Bob.

Upon unloading the van and all of it's contents, we began our journey into the zoo. We found out that at this special entrance, there were no wheel chairs, scooters, wagons or other such equipment available to make the trip through the displays easier. We had to make our way to the very back to rent the scooter. Bob thought he could make it so we continued on....

After making a few stops at various animal displays on our way to the back of the zoo, I noticed that we were losing Bob. He began to hurt pretty bad so he was slowing down to a crawl. I realized he wasn't looking to good, he was really pale but he was smiling. I think he was just glad to be doing something with us instead of being stuck at home. You don't realize what a blessing it is to be with your family and to be able to do things without hurting so when life events occur and you have it to deal with, you push and fight to regain just a moment of that in the midst of your struggles.

I did have a brief moment of panic though. I thought we were going to get stuck in the middle of the zoo with him not being able to move. I wondered what I would do with the baby and the other children while trying to help him. I realized that we can no longer just go do things randomly but have to think about things like: Is it handicap accessible, do they have medical personnel on board if needed, do they have scooters at the entrance, how far is it, etc. We even have to think about the car ride there and back. This being our first big family activity since Bob got sick was a bit of a comedy of errors. We will know what to do to make it easier and better for all next time.

By taking small breaks and walking very slowly we managed to get to our destination only to find out they didn't have any scooters available at that outpost. Sigh. The attendant must of suspected he wasn't doing well because she called up front and insisted that one of the security guards drive the golf cart to the back to pick Bob up and take him to the front to pick up a scooter.

The kids had a lot of fun even though we wasted much time just trying to get the scooter. They enjoyed being driven around on the scooter. I think that was a highlight for the younger ones. The other highlight was the spray misters they have throughout the zoo making it more bearable on a hot day. I don't think the zoo intended those to be used to soak oneself but hey, when you are a kid, soaking yourself is super way cool.

I am looking forward to our next trip back there hopefully in the next month. We will know better how to handle things, therefore, giving us more time to see more of the animal displays. Sometimes life is all about handling new situations with grace and that is what we are trying to do. In the process, it makes you more compassionate for those who struggle on a day to day basis.

Ryan's Big Day

We recently celebrated Ryan's big day! He is now nine years old and is glad about that. Nine is a fun age to be. One of the things he absolutely loves is animals so a trip to the zoo was a perfect idea but it had to wait until the next day due to the weather. Ryan is absolutely thrilled that his number nine birthday is finally here because he is a man now. Arm pit hair is just around the corner as this is something he is looking forward to. Why do kids always want to grow up faster than they are?

One of the highlights of the day was the downpour of rain that made ginormous puddles in the parking lot which we zoomed through with the car making huge waves. This apparently humored him to great lengths. His older brother ran through them soaking his shoes and shorts which left Ryan not wanting to be left out of that fun. It became a fun sport between the two of them and as I watched them enjoying their rascally moment, I tried not to think about the wet shoes. They'll dry, right??!!

One of the items he wanted for his birthday was a paddle ball so we went on the search. I didn't realize how many stores I would have to go to to find such an item. Believe it or not, we finally found it at the grocery store. Crazy. Perhaps now he'll practice hard and become the world paddle ball champion which is his goal. Ah, I love that kid.

He wanted bratwurst and lemon cake for his special dinner and that is what he got. All in all, it was a fun day with a very fun boy (I mean man).

Happy Birthday, Ryan!