Wednesday, July 16, 2008

Officially disabled

I have been struggling to deal with my own disability since the beginning. At first, it was hard to accept that I may be permanently disabled. As time went on, it was obvious the disability was permanent. However, then the long term disability company denied my disability not once, but twice. Their basis for denial was that I had no diagnosis. I even called them back once I got a diagnosis and they wouldn't allow me to reapply unless I had gone back to work. Seton wouldn't let me go back to work because I was no longer capable of doing my job. I was stuck. The disability company said I was able to do my job and my employer says I was not able to do my job. That left me wondering if maybe I could do more than I thought I could. I wondered if maybe I could work in a doctors office again. Then I thought of how I felt when I had a very busy day. I was never as busy as I would be if I worked 8 hours. I was useless the next day if I had a very busy day. I could only work one day before I would need one off. That wouldn't work. Plus, some days are better than others. It was an internal struggle. I really needed to start owning my disability.

It took me a while to apply for state disability. Part of it was because I didn't have the energy to fight. I had heard story after story of people having to fight for their disability. I had also heard of many stories of people getting their disability approved yet they were perfectly capable of working. I decided in April to go ahead and apply. I was prepared to get denied the first time. I was prepared to have to hire a lawyer and appeal the decision.

I got a call yesterday. Andrew tells me it is the disability people. My stomach jumped in my throat. She told me that my disability had been approved. I was shocked. She proceeded to process the application for my children over the phone. I had no idea my children would get benefits too. They each get money sent each month to be used for food, clothing, etc. For now, we are going to put that money in a savings account and use it only when we have to. We can save for college, and then use it if something big comes up such as one of them needing braces or something like that. The best part is that they are going to pay 1 years back pay. After we get that, we are paying off our car and we will be completely debt free except our house payment. I still can't believe it.

It is a huge weight off my shoulders to know that my family will be taken care of financially. I didn't ask to have MS. Prior to this MonSter moving into my body, I took care of my family physically, emotionally and financially with the help of my husband. I can still take care of them emotionally and physically, but I can't take care of them financially any more. With inflation, it is very hard to be a single income family anymore. Even within the church where it is more common to stay home, more and more moms are having to work part time to help make ends meet. I have always dreamed of being a stay at home mom and now is my time. I am so grateful that my prayers have been answered.

Saturday, July 12, 2008

I'm much better

It has been quite a while since I updated this blog. Things are going much better for me know. I had to do IV then oral steroids for my MS flare. I have finished both now. I can move my toes, but my left foot is still weak and I still have the foot drop. I am walking better though. I am a lot slower that I used to be and I have had to move to a quad cane. I was thinking I was going to have to start using a walker though, so I am grateful for the quad cane. The week of girls camp, I actually ditched the cane and was able to walk without it for about 2 weeks. I guess it was 1 step forward and 2 steps back. I'm not sure if I can still expect some improvement or it this is as good as it is going to get. I'll see Dr Westgate in about 9 days, so I will ask her about it then. In addition to the foot drop on my left, I have increased spasticity on the right. I have had the spasticity for quite a while, but it got worse with the flare. Along with the steroid treatment came steroid induced diabetes. Right now, we are just monitoring my blood sugars. I am getting more and more normal levels the longer I have been off steroids. About half of my levels are higher than the normal range, but they are getting closer to normal every day. My last really high level was on Thursday when it was 209. Today, my high was 141, so much better than 209. I hope they continue to get better. I would hate to have to add diabetes to my MS. I will know to watch my blood sugars a lot closer the next time I have to do steroids. I wish I could say there wouldn't be a next time, but that isn't exactly realistic.

I have a new niece. Emily had her baby on Wednesday morning. My new niece is Katelyn Emily. She was 7 pounds 4 ounces. Emily brought her down to see grandma today. Stan took the kids over there to see the new baby. I had a migraine, so I stayed home. Here are Rachael and Jeremy with Katelyn. Andrew has never been that interested in babies, so I doubt he got too close to her. Jeremy LOVES babies.

Thursday, June 26, 2008

The MonSter strikes again

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.

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.

Monday, May 19, 2008

The start of another crazy week

This week is going to be nuts. Tonight, Rachael had dance class and then my brother and his family came over to celebrate Brandon's birthday. He turned 6 on Saturday. They were only here for a short time, but that is OK. I am so tired just from all of the stuff I have been trying to get done today. I did a ton of laundry, got some of the kitchen cleaned, got my disability application complete and ran a bunch of errands. We had to go pick up some supplies for the cross over tomorrow night.

Tomorrow night, we have a cub scout cross over. Andrew will become a Webelos 2. Jeremy gets to cross into Tiger cubs. He is so excited. He has wanted to be a Cub Scout since he turned 6 on January. During the day tomorrow, Andrew has a dentist appointment and I have to go get Rachael some black tights for her dance show on Thursday and Friday.

On Wednesday, Rachael has to be at dress rehearsal from 5:30 to 9pm. She will miss YW, but that is unavoidable. Andrew is going to have to miss church scouts (it is confusing, don't ask LOL) because Stan has to be at the Stake center for his stewardship interview with the Stake President. During the day on Wednesday, I have weight watchers in the morning, then a GYN appointment in the afternoon. I am hoping to have a good WW meeting. Last week, I had gained 3.4 pounds, which was not surprising considering all the junk I ate and the multiple BBQ trips we made while my dad was here.

Thursday and Friday we have Rachael's end of year demo. Stan and the boys will go on Thursday, but not Friday. On Friday, they have a Father/Son campout for church. The boys look forward to this every year. We thought it was going to be next weekend. The Elder's Quorum is in charge of breakfast on Saturday. Rachael is not worried about them missing the demo on Friday since they saw some of these dances at her VIR show a few weeks ago.

Since they will be at the camp-out on Saturday, I get to go down to San Antonio with Rachael on Saturday. I figure since we are going to go down anyway, I'll fill the van with as many of the VIR girls as I can. I am most worried about the trip home. I will have lots of them in the car to keep me awake though, so I don't have to worry about falling asleep on the way home. I know I am going to be dead tired though.

With the crazy schedule of the week, I decided we were not going to do school work on Friday. Instead, I am going to take the kids to see Prince Caspian at the theater. We took the boys to see Ironman on Saturday. They asked if we were going to see Prince Caspian that day. Rachael would have been so mad if we had seen that without her, especially since she is the only one that has read all of the books. My MIL might go with us if she feels up to it. She gets stronger and stronger all the time.

So, there was my boring post summarizing my not so boring week.

Thursday, May 8, 2008

Up to my ears in BBQ

My dad is here from Idaho. They just don't have great BBQ in Idaho. Texas has some of the best BBQ in the country. Whenever he comes down, we always go out for BBQ. We used to always go to Salt Lick. About 2 years ago, we introduced him to Rudy's. They are both great BBQ, just different styles. Rudy's sauce is spicy and Salt Lick's is sweet. On Monday, we went to Salt Lick. We had to roll out of there. They have an all you can eat family style dinner. This morning, I was talking to my dad about making dinner for everyone since it is his last night here. He offered to take us to Rudy's so I didn't have to cook. BBQ twice is one week is hard on a body without a gall bladder. It was so worth it though. I love BBQ. My dad leaves tomorrow and I will really miss him.

Tuesday, May 6, 2008

Ramblings

This may truly be ramblings too. I could not sleep last night and so I have only had about 4 hours of sleep today. Please forgive me if I ramble.

Rachael's dance show went really well. The bio-boards got all done in time for the show and they were a big hit. Tasha loved her book and several other mom's want the info on ordering one for themselves. Rachael danced so well. My dad is here from Idaho and got to see her dance. He always seems to enjoy watching her dance. Aashlie and Jessica got to come. They don't always get to come to her shows. Aashlie was going to figure out a way to go even if she had to pay for herself. Amira and Andy also went. On the way home, Andrew and Jeremy rode with grandpa. In the van, I had Rachael, Amira, Aashlie, Jessica and Andy. WOW, it was loud in the car. Andy and Amira constantly pick on each other.

On Sunday, I made chicken Parmesan with pasta and marinara. Margie and the kids came over for dinner. I figured if I had several dinners for everyone at my house, then my dad wouldn't feel like he was having to chose between the 2 places. Bryon didn't tell me he had to work on Sunday. When I told him Dad was coming, he told me he was off on Sunday and Monday. His schedule got changed around but he didn't let me know it did. That is pretty typical of my brother.

Last night, we all went to the Salt Lick for dinner. It had been years since I had been there. I forgot how good it is. The last few times my dad was here, we went to Rudy's. They are both some of the best BBQ I have every had, but they are just a little different. Rudy's is spicy and Salt Lick is sweet. I do like the sides at Rudy's better though. I love their cream corn. I was so full after dinner last night. I don't know how my brother walked out of there. He ate about 10 times what I did. I do have to be a little careful when eating BBQ though. My body doesn't always like it since I don't have a gallbladder.