I am officially having my second major MS flare this year. I was sitting in my recliner with my feet up, doing some designing on Tuesday. I noticed that both of my feet were asleep. I always have some numbness and tingling to my right lower leg, but this was a lot worse than usual. I started moving my legs around to "wake" them up. I noticed that the toes on my left foot wouldn't move and I had a foot drop on the left. I had to calm myself down. I could feel the "freak out" building within me. I went and layed down on my bed for a few minutes to figure out what I was going to do. DUH!!! I need to call the doctor. I don't know why it took me 20 minutes to think of that. I had just seen the neuro last week and she went on and on about how good I looked. I went back into the doctor yesterday. When I saw her last week, she discussed the possibility of this being Devic's syndrome since I have had so many episodes of optic neuritis. She ordered an antibody test for Devic's. This antibody shows up in 70% of Devic's patients. She also wants to repeat the MRI of my spine. We are hoping something will show up at some point, but I am not holding my breath. It will probably be normal again. Most people pray for normal results, but not me. I am past that. I just want something to show up to give us proof of what is going on. I want to be able to say "nanny, nanny boo boo" to all of those doctors that said there was nothing wrong with me.
Tomorrow, I will start IV steroids again. I have to do 5 days this time, then do a 9 day oral taper. I am not looking forward to this. I just had to talk to the insurance company about this. The home health company told me they were denying to authorize this because I had already had it this year. When I called the insurance company, what they actually needed was clinical symptoms. All they had was that it was an MS exacerbation. I told them my symptoms and they said that met the criteria so it should be approved soon. Having to do the steroids is bad enough, but having to fight to be able to do them is awful. It's not like this is something that makes you feel good. Who would want this if they didn't absolutely need it?!? I should be able to start the steroids as scheduled tomorrow morning. I now need to pray really hard that it works and I get my sensation and movement back. I really don't want to have to wear an AFO on both legs.
Thursday, June 26, 2008
Sunday, June 15, 2008
Girls camp
We have survived another year at camp. It was challenging, but worth it. Things started to go downhill on Saturday. Our van bit the dust Saturday evening. I was suppose to drive to and from camp. We found out that the stake did not need my van to take girls and we arranged other drivers for the drive home on Saturday. First hurdle crossed. Dad was here visiting and leaving for Alabama on Monday morning. He drove Aashlie and me out to camp on Monday. It was nice to ride with him and get a few extra time to talk. Stan and Bryon got the van working on Monday for a fraction of the cost as it would have cost at a garage.
When I got to camp on Monday, the camp director told me that I would not have a golf cart to use this year because it was broken. I almost freaked. I explained to her that I needed to be able to get to the girls if they are injured. Plus, I was only able to go to camp because I had access to the cart to get around. I don't have the stamina or the range of motion in my leg to be able to walk all over the place. I spoke with Sis Toler and Sis Hollingsworth about the issue and they spoke with the head camp director. They borrowed a golf cart from another camp and had it to me by Tuesday afternoon. I let it charge and started driving it after dinner. It was good timing too because not long after that one of the Kyle Stake girls slipped on the gravel and injured her ankle. I thought it was broken. After going to the ER and getting an x-ray, it was badly sprained. She wanted to stay, but was in too much pain by the next day so she went home. They also came and told me on Wednesday night that I could not be in the cart after dark. I explained to them that I had girls with injuries that needed to be brought back up from the amphitheater and our schedule was already set so that we did not get back up until after 10pm each night. I told her that I would be very careful and would only use the cart after dark to get the girls back up to their camp sites and then for emergencies. She said that was fine, but then a sign showed up on my cart on Friday afternoon stating the carts could not be used after 9pm. I talked to the camp person that was placed in charge of our group and he said to just use it. Sherri and Kris were going to discuss this with them when they settled things for next year. I want to be prepared for next year. If I am not going to have access to the cart to get girls up from the amphitheater after dark, I need to know about that. I will have to arrange something else. I am going to have to trust in the Lord that he will arrange things to work out. In total, I sent 2 girls to the ER, one for stitches in addition to the ankle injury. I also almost had to call EMS when one of the leaders broke out in hives and was having a little bit of wheezing. I gave her 50mg of Benadryl and things started improving after about 15 minutes. If at any point she had told me she was feeling worse, then I would have called EMS. It was scary.
There were lots of girls that were dehydrated, had heat exhaustion and were depleted of electrolytes. It was a lot of work having 2 stakes of girls there. I ran non stop the entire week. The Kyle stake was on a different schedule that we were, so I got calls on my cell phone during the testimony meeting, during a fireside and during the Hill Country ward skit. Some of them were for very simple things because they were us at the cafeteria and that is when the girls go to the office for the simple things. It was embarrassing for my phone to go off in the middle of a spiritual moment though. I know everyone understood though. They knew I wasn't just getting calls from friends. They knew it was a call to take care of someone. If it hadn't been my cell phone, it would have been the walkie-talkie.
Here is a picture of Rachael when she got back from her hike. I didn't notice that her eyes were closed. DARN!!! She had a great time on her hike. They went rock climbing and she loved that. During the hiking part, they hiked in 3.5 miles, set up camp and did dinner. They made pasta with alfredo sauce. I never ate that well on a camping trip. When they were hiking back out, the girls were exhausted and over heating. They sent the priesthood back to get the girls with the truck. Rachael was getting close to the end and refused to get into the truck. She said Andy would never let her live it down if she didn't finish the hike. He would have called her a wimp. She did the entire hike with her pack on the entire way. I was told she never complained. She had a few blisters when she got back. She didn't break her boots in before the trip. She had lots of bug bites as usual and she was really tired, but she would do it again in a heart beat. She is already planning on doing the hike when Aashlie does her 4th year hike. Now that she is officially a JC, she is planning on doing the 1st years next year and she wants to be Jessica's JC and then be Aashlie's JC on her 4th year. She is going to make a great JC. Sis Leese was excited that she was finally "hers". She is going to be a pro since she has been there on Monday the past 2 years.
Here is Rachael just before the carnival on Thursday. They had the 4th years leading the girls with songs while the rest of the JCs got things ready for the carnival. Rachael said the other girls didn't want to listen to the 4th years since they weren't really JCs. She was good though. She got really into the songs while she was leading them. She even lost her voice because she was trying to sing above all of them.
This is Rachael's new boyfriend. In the carnival, they did "pin the tag on the missionary". They had some games that were church related such as this one and name the church song, "Who said" where you had to say which prophet said each thing and lots of others. They got a punched ticket for that. They had other games such as bowling, tattoos, piercings, hoola-hoop, etc. They got non punched tickets with that. They periodically took girls out of the carnival. Those girls were "dead". If they had piercings or tattoos, they had to remove them and repent. If they had at least 15 punched tickets, they got to go on to the iron rod (a rope strung tight between the trees). They were dressed in white and blindfolded while they walked along the iron rod. Along the way, they had some of the JCs trying to trick the girls into letting go of the iron rod. Vanessa Sellers was one of the tempters. She convinced Rachael to let go of the rod because there was a big ant hill in front of her. There wasn't one there, but Rachael let go just in case. She had to repent to get back to the iron rod. It was a neat activity. I didn't go the iron rod, but I really enjoyed listening to the girls all talk about their experiences. At the end, there was a tree covered with white Christmas lights for the Tree of Life. The girls got these ornaments made from tissue paper pressed into a picture of the Salt Lake Temple. They were so fragile though. Most of the girls had theirs rip before they even got them back to their tents. I don't know how anyone got them home. The JCs sang some songs from Jenny Phillips that went with this years theme. Our theme was "Walk in his Path". The Kyle stakes theme was "Shine like a Star" or something like that. The songs actually fit with both themes.
It has become a tradition for Rachael and I to have our picture taken together after the water fight. We did this one before either one of us got wet. Right after that, Rachael dumped a cup of ice water over my head. Most of the girls didn't stick around for the water fight. After the certification relay, they were allowed to swim so most of them took off for the pool. I was disappointed there wasn't much of a water fight. They had the water slide again. Sis DeLeon tried to go down it but she didn't get a good enough run. The girls had to pull her down the slide. It was really funny.
Thanks for reading through my very long post. A lot happened last week and I only scratched the surface. It was a long, hot week with lots of trials but lots of joy. Give me a week to recover and I will be ready to go back. Somehow, the Lord takes care of me when I am at camp. I have fewer MS symptoms while I am at camp. The foot drop is still there, but the pain is gone and the fatigue is better. I actually didn't have to use my cane all last week. I lost my balance a few times, and I tripped once and bruised up my knee badly. I wonder if I would have fallen if I had been using my cane. I'll never know.
Corrine tagged me with a photo tag. I am too tired to do it right now so I will do it later. I promise I won't clean anything up before I take the pictures.
When I got to camp on Monday, the camp director told me that I would not have a golf cart to use this year because it was broken. I almost freaked. I explained to her that I needed to be able to get to the girls if they are injured. Plus, I was only able to go to camp because I had access to the cart to get around. I don't have the stamina or the range of motion in my leg to be able to walk all over the place. I spoke with Sis Toler and Sis Hollingsworth about the issue and they spoke with the head camp director. They borrowed a golf cart from another camp and had it to me by Tuesday afternoon. I let it charge and started driving it after dinner. It was good timing too because not long after that one of the Kyle Stake girls slipped on the gravel and injured her ankle. I thought it was broken. After going to the ER and getting an x-ray, it was badly sprained. She wanted to stay, but was in too much pain by the next day so she went home. They also came and told me on Wednesday night that I could not be in the cart after dark. I explained to them that I had girls with injuries that needed to be brought back up from the amphitheater and our schedule was already set so that we did not get back up until after 10pm each night. I told her that I would be very careful and would only use the cart after dark to get the girls back up to their camp sites and then for emergencies. She said that was fine, but then a sign showed up on my cart on Friday afternoon stating the carts could not be used after 9pm. I talked to the camp person that was placed in charge of our group and he said to just use it. Sherri and Kris were going to discuss this with them when they settled things for next year. I want to be prepared for next year. If I am not going to have access to the cart to get girls up from the amphitheater after dark, I need to know about that. I will have to arrange something else. I am going to have to trust in the Lord that he will arrange things to work out. In total, I sent 2 girls to the ER, one for stitches in addition to the ankle injury. I also almost had to call EMS when one of the leaders broke out in hives and was having a little bit of wheezing. I gave her 50mg of Benadryl and things started improving after about 15 minutes. If at any point she had told me she was feeling worse, then I would have called EMS. It was scary.
There were lots of girls that were dehydrated, had heat exhaustion and were depleted of electrolytes. It was a lot of work having 2 stakes of girls there. I ran non stop the entire week. The Kyle stake was on a different schedule that we were, so I got calls on my cell phone during the testimony meeting, during a fireside and during the Hill Country ward skit. Some of them were for very simple things because they were us at the cafeteria and that is when the girls go to the office for the simple things. It was embarrassing for my phone to go off in the middle of a spiritual moment though. I know everyone understood though. They knew I wasn't just getting calls from friends. They knew it was a call to take care of someone. If it hadn't been my cell phone, it would have been the walkie-talkie.
Here is a picture of Rachael when she got back from her hike. I didn't notice that her eyes were closed. DARN!!! She had a great time on her hike. They went rock climbing and she loved that. During the hiking part, they hiked in 3.5 miles, set up camp and did dinner. They made pasta with alfredo sauce. I never ate that well on a camping trip. When they were hiking back out, the girls were exhausted and over heating. They sent the priesthood back to get the girls with the truck. Rachael was getting close to the end and refused to get into the truck. She said Andy would never let her live it down if she didn't finish the hike. He would have called her a wimp. She did the entire hike with her pack on the entire way. I was told she never complained. She had a few blisters when she got back. She didn't break her boots in before the trip. She had lots of bug bites as usual and she was really tired, but she would do it again in a heart beat. She is already planning on doing the hike when Aashlie does her 4th year hike. Now that she is officially a JC, she is planning on doing the 1st years next year and she wants to be Jessica's JC and then be Aashlie's JC on her 4th year. She is going to make a great JC. Sis Leese was excited that she was finally "hers". She is going to be a pro since she has been there on Monday the past 2 years.
Here is Rachael just before the carnival on Thursday. They had the 4th years leading the girls with songs while the rest of the JCs got things ready for the carnival. Rachael said the other girls didn't want to listen to the 4th years since they weren't really JCs. She was good though. She got really into the songs while she was leading them. She even lost her voice because she was trying to sing above all of them.
This is Rachael's new boyfriend. In the carnival, they did "pin the tag on the missionary". They had some games that were church related such as this one and name the church song, "Who said" where you had to say which prophet said each thing and lots of others. They got a punched ticket for that. They had other games such as bowling, tattoos, piercings, hoola-hoop, etc. They got non punched tickets with that. They periodically took girls out of the carnival. Those girls were "dead". If they had piercings or tattoos, they had to remove them and repent. If they had at least 15 punched tickets, they got to go on to the iron rod (a rope strung tight between the trees). They were dressed in white and blindfolded while they walked along the iron rod. Along the way, they had some of the JCs trying to trick the girls into letting go of the iron rod. Vanessa Sellers was one of the tempters. She convinced Rachael to let go of the rod because there was a big ant hill in front of her. There wasn't one there, but Rachael let go just in case. She had to repent to get back to the iron rod. It was a neat activity. I didn't go the iron rod, but I really enjoyed listening to the girls all talk about their experiences. At the end, there was a tree covered with white Christmas lights for the Tree of Life. The girls got these ornaments made from tissue paper pressed into a picture of the Salt Lake Temple. They were so fragile though. Most of the girls had theirs rip before they even got them back to their tents. I don't know how anyone got them home. The JCs sang some songs from Jenny Phillips that went with this years theme. Our theme was "Walk in his Path". The Kyle stakes theme was "Shine like a Star" or something like that. The songs actually fit with both themes.
It has become a tradition for Rachael and I to have our picture taken together after the water fight. We did this one before either one of us got wet. Right after that, Rachael dumped a cup of ice water over my head. Most of the girls didn't stick around for the water fight. After the certification relay, they were allowed to swim so most of them took off for the pool. I was disappointed there wasn't much of a water fight. They had the water slide again. Sis DeLeon tried to go down it but she didn't get a good enough run. The girls had to pull her down the slide. It was really funny.Thanks for reading through my very long post. A lot happened last week and I only scratched the surface. It was a long, hot week with lots of trials but lots of joy. Give me a week to recover and I will be ready to go back. Somehow, the Lord takes care of me when I am at camp. I have fewer MS symptoms while I am at camp. The foot drop is still there, but the pain is gone and the fatigue is better. I actually didn't have to use my cane all last week. I lost my balance a few times, and I tripped once and bruised up my knee badly. I wonder if I would have fallen if I had been using my cane. I'll never know.
Corrine tagged me with a photo tag. I am too tired to do it right now so I will do it later. I promise I won't clean anything up before I take the pictures.
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