Wednesday, June 25, 2014

Wedding Bells and Other Happenings

Well, I made it through the wedding. And, let me tell you, there's nothing like seeing your son get married in front of family and friends. What a beautiful ceremony it was. I know I was running on pure adrenaline that day and night. I danced, ate, spoke with friends and family and danced some more. My only regret about the day was that I didn't talk to more people and that I didn't just stop and savor the experience. It was sort of surreal how fast everything happened. You have all of the months of planning, and the hectic few days before, then, it's over. And, then there's the whole dealing with a chronic illness thing. Not just for me, but for my youngest daughter, who was a bridesmaid. We had to do some extra planning. Making sure we both had our medicines, and extra food and drink. At one point, before the ceremony, I found Elizabeth laying on the floor with her feet up drinking a Powerade and eating a snack. She did what she had to do.

Here's a picture of the newlyweds right after the ceremony.

I have been doing much better than I expected. I knew the wedding would take a lot out of me and I really thought it would set me back a bit, but I don't think that it has. I rested a lot the week after. I did do a lot of housework, but I rested in between chores. I also, didn't do much errand running. I'm realizing that that really seems to set off my symptoms in a big way. The getting in and out of the car, walking around stores, standing in lines and being out in the heat all really, really affect me. Being at home, isn't as bad. I can really pace myself more. I may have to hand over some of my errand running and shopping trips to other members of the family.

Yesterday was a pretty scary day for us. Elizabeth had a pretty severe reaction to a new medication she started. It started out with vomiting in the middle of the night, then in the morning, she became very weak and sort of disoriented. The oddest thing was she developed these weird body movements. She would wring her hands and arms around and move her legs. It was really uncontrollable. She started to feel as though she would faint, so she put her head between her legs, but every time she would try to stand up, she really would start to faint. She finally laid down on the floor. In the end, we called an ambulance because I really didn't know what to do. I knew she couldn't walk and I didn't think I could carry her to the car. Plus, I really wanted her to have the medical care right away. And, I knew she had met her deductible, so we wouldn't have to pay for the ride. It's sad that that has to play into the equation. Honestly, as bad as she was, I probably would have called one regardless. I think the medication really messed with her autonomic nervous system and that she did have an allergic reaction to it. They gave her IV steroids, Benadryl and Pepcid (apparently, it's good for allergic reactions, especially in combination with steroids and Benadyl). After more than three hours in the ER, they let her go home. She slept off and on during the day, but not us much as she probably should have. She was sent home with the same medications in pill form. It's so hard to see your child, no matter how old, go through something like this. I wasn't very happy with the ER staff, because apparently, once they got her settled, they left her alone in the room screaming. Her boyfriend, who had ridden in the ambulance was in a different waiting room than I was in (I thought he was back with her and he was wondering where I was.) When they finally came to get me, I saw him on our way back to her room and asked if he could go back too. They let him and he calmed her down almost immediately. I know she was worried that they thought she was some sort of drug addict. She was screaming and thrashing about. I don't understand why at least one of us wasn't allowed back with her from the very beginning. It wasn't as if it was a tiny room. And, it wasn't as if they needed a whole team of medical professionals working on her. At the very least, as soon as they were done, they could have had one of us in there so she didn't have to be alone for any length of time. Mama bear was not happy at all.

My mitochondrial disease testing is all finally underway. I won't bore you with all of the details, but after some back and forth with the insurance company and lab, things were finally worked out. My testing is being covered at an in network rate. I was concerned about, but willing to pay the $800 left of my deductible in order to get the testing. But, the lab has a financial plan where they will cover nearly all of the costs of the tests except $100. I really, really didn't think we would qualify as our family has what I would consider a pretty high income. Still, I thought it couldn't hurt to fill out the form. There were several places on the form where you could add expenses for medical care, tuition and/or childcare, housing, etc. I'm sure once I added in some of those expenses, that really helped our chances of getting the aid. I guess one reason I'm explaining all of this here is to encourage anyone out there who has a chance to apply for help with these types of lab tests to do so, no matter what you think your chances are of receiving the help.

It appears that nap time is near. When I start to fall asleep at my laptop I know it's time to wrap things up! Here's a link to a great website I ran across today. It has a lot of good tips for dysautonomia. Even if you don't suffer from that, there are some general tips for dealing with chronic illness that you may find helpful.
http://www.dysautonomiasos.com/

Have a blessed day everyone!




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