I woke up slightly to say goodbye to my youngest daughter as she left the house with my son to go to school today. This was a day off for me. I took the day off so that I could go with my husband to his appointment in Scottsdale with the neurologist. I haven't stopped running since about 9 a.m. this morning when Lexi called me to tell me she had a migraine and needed to be picked up from school.
When I got to the seminary building to pick her up, there was Lexi, the bishop's daughter, and our Bishop in his truck. All I could think of was, "Does that man know everything??" He was actually there working and he just happened to be at the right place at the right time. He gave his daughter a hard time and asked her why she was ditching school. To which she replied to Lexi, "Thanks Lexi!" LOL!!! The Bishop's daughter was just being a good friend and keeping my daughter company while she waited for me to arrive. Lexi came home took some medicine and drank some caffeine (per her doctor's orders) and spent the rest of the day on the couch in the family room. Thank goodness Kyle was able to be home with her today so I could take Kevin to his appointment.
Kevin's doctor is about 30 miles away from our home and the appointment was at noon. We left the house at 11 a.m. to make sure we got there in time. There has been a lot of construction and as it turns out we missed the turn and ended up in North Scottsdale, way beyond where we should have turned. We back-tracked for a few miles and finally got to the office about 10 minutes before noon. Today the doctor ran a nerve test on Kevin. The nerve test did not look like fun at all. He put needles in various places on Kevin's feet, legs and had intended to put one in his back if need be. This was all done to determine the degree of nerve damage Kevin has. The test determined basically what we already knew. He needs to see about having a nerve stimulator placed in his back to help with the pain. Kevin will be on pain medication for the rest of his life and eventually will end up in a wheelchair. After doing a little reading up on the condition Kevin found out that his pain will be as bad as any pain a cancer patient will experience just before they are given the relief of dying. Kevin just will not have that relief, he will just wish he was dead. Needless to say, Kevin is not in a good place right now, which I cannot blame him. We have talked a little bit tonight, but not enough. He needs to talk to me, but he is resting now.
After Kevin's appointment with the Neurologist we ended up in the pain specialist's office to get the next prescription. They are trying to up the dosage on his medication. I dropped Kevin and home, we had a late lunch/dinner and then I had to run for my 5 p.m. doctor's appointment. I got home about 6:15 p.m. and then ran back out to find a pharmacy that had his new medication in stock. Come to find out no one has it. We could drive to Payson or Coolidge to get it in the generic or pay the $140.00 to get the name brand. That price is after our insurance paid their portion, and we have met our entire deductible for this year. The brand name medication is not completely covered under our insurance. So, thank heavens we had almost all of that amount on our HSA card, otherwise I guess Kyle would have had to make the trip to Payson or Coolidge. Kevin has to have this medication. We are talking the difference in Kevin getting some relief and being able to actually get out of bed for a moment or two. That is what this medication is going to do. Right now, he is able to be up for a few minutes and that is it.
In fact, Sunday we made it to Sacrament Meeting. Kevin was hurting so bad about half way through one of the speakers talks and wanted to go home. BUT, he wouldn't let me take him home in the middle of the meeting because he didn't want to fall in the isle of the church and disrupt the meeting. So he waiting until the end. That night we met with our Bishop for tithing settlement. We had to walk with one my arm under one shoulder, and Curtis with his arm under the other shoulder just to get him to the car. When we got home we did the same thing. He was so worn out by then.
I think the thing that gets me the most is that pretty much everyone has been totally understanding and wonderful about giving Kevin the space and time he needs to get to and from places. The part that has been difficult for me has been other family members that act like Kevin should be able to get up and function like everyone else, even after we have told them repeatedly what is happening here. I just don't understand how they could possibly think that?!!! The nerve. ~smile~smile~
Thank Heavens we did get Kevin's medication and we finally got home tonight at 8 p.m. AND, thank Heavens for medical insurance and having met the deductible! Danielle (our oldest daughter) came over tonight and read the receipt to Kevin. She said the insurance paid $650.00 of the fee, we paid the $140.00, that means for 10 tablets this medication costs: $790.00!!! Can you believe that! Just for 10 tablets. Eventually Kevin will need a 30 day supply. And after the first of the year too! That means, $2370.00 will be the price! Holy Cow!!! We would be responsible for that entire amount after January. This is never going to work. Time to talk to the pain specialist about some other way. EEK!!! The generic is the way to go, but if the pharmacy does not have it in stock they tell you it could take them up to a week to get in stock. Don't they understand that these people with chronic pain need their medication right away and going 7 days without it is not even an option. They have you coming and going. The doctors will not write for the medicine until you are out of the medicine, and the pharmacy will not keep it in stock. So frustrating! Something has got to give here! I can see why you hear about widows having to make the decision about whether or not to buy food or their medications. It's just sad! I'm am confident that something will happen. Either the doctor will change up the medication, a source for the generic will be found, or some kind of prescription program will be found to provide the brand name at a discount. Wow!!!
Earlier tonight I was asked the question how do I deal with all of this. How do I deal with having to take on everything. I answered that I really do not feel like the weight of the world is on my shoulders. Which is the truth. I said, a couple of years ago I would have felt the weight and it would have snuffed me right out. Today, I do not feel it. I believe I do not feel it because of the family I have. Our children are awesome! They have been incredible through this entire thing. Sure, it hasn't been easy on them, but they have been here and done what they could to help us get through this. AND I know my Heavenly Father is right here with me. I feel Him here with me everyday. Certain things have happened and certain situations have been totally taken care of in a way we never would have dreamed possible and I know it is because of my Heavenly Father's hand in our daily lives that has made this possible. He knows exactly what we are going through. He knows exactly what we need, and he knows how to make it happen. I know he has placed certain people in our lives for the very reason to help us get through this. I know that without a doubt! What a blessing it is to have a Heavenly Father who loves us so much that he sends others to help us along the way. We are so very blessed. Even during some of our wildest trials ever, we know that we are incredibly blessed. We cannot deny this. You may ask how do I know this. I know this because I was taught this from a very young age by my parents. I know this because of the church that I belong to. I belong to The Church of Jesus Christ of Latter-day Saints!. The very title of our church will tell
you who our religion is centered around. Our Savior Jesus Christ.
There is so much more I would like to say, but it is getting late. I really need to get to bed. Please forgive me for sounding a little negative today. It's been a crazy day and I just needed to get some of my frustrations out. I appreciate your patience with me as I work some of this out. It means a lot. I hope your have a great week and we will talk to you soon.