August 2009, I sustained an injury to my right foot and ankle and after several months of various doctor visits and physical therapy, they finally determined that I have a rare nerve damage injury called Complex Regional Pain Syndrome aka RSDS (Reflex Sympathetic Dystrophy Syndrome). RSDS is an injury disease. For more information on RSDS you can go to this website South Texas Innovative Medicine.

If left untreated the pain can spread throughout the entire body. It has already spread to my hip and is starting up the right side of my back. Dr. Rhodes at South Texas Innovative Medicine specializes in treating patients with this syndrome and has a 90% success rate. Treatments however must be done at the clinic in Corpus Christi, TX for 15 consecutive days and is extremely expensive. I needed to raise between $8,000 - $10,000 for the treatments, housing, food, airfare, and transportation while in Texas.

Saturday, September 18, 2010

"The Ash" Charity Guitar for Raffle

Before I left for Texas Arcwood Guitars donated a guitar that I could raffle off to help pay for my treatments. It's valued at $3000. I figured that I would love to give those that would love a guitar and can't afford one a chance to own an amazing guitar. I decided to raffle it off - $10 a ticket. You'll have 1 in 500 chance of winning. The more tickets you purchase the lower the ticket price. Our little family thanks you for all your support.
Check out Arcwoods Website to see and hear what "The Ash" is like - it's amazing!!!

The NEW Vecttor Machine is Here!

I know it's been forever since I blogged about my RSD. As you know I came home in April without the new VECTTOR machine. Just with the STS machine, which worked great while I was in Texas but my frequencies change multiple times daily the machine just wasn't working. About 2 weeks ago I finally received my VECTTOR machine! I was calling Dr. Rhodes office all the time about the arrival - I completely felt like I was bugging them to death. I'm back to having pain like I did before I left for Texas. I started my treatments a few weeks ago. I'm understanding everyday why it's so important to receive treatments away where you can relax. You know, I try my hardest to be a good mom, but I'm exhausted. We get up in the morning and I drive Hais to school. Come home and be with Payton until he takes a nap. If I'm actually having a good day which a far and few between then I might pick up the house a little. I've had to come to the realization that my house will never be how it used to be. As long as my RSD is bad, it's just going to have to be a little dirty and there's going to be dishes in the sink.
My treatments are going ok, it's just really hard trying to get both treatments in before I pick up Hailee from school. Payton has been having a really hard time sleeping lately. After the kids are in bed, I start my night treatments. I've been so tired I usually fall asleep during my treatment and wake up when the machine beeps at me. I drag myself to my room - get undressed, brush my teeth and wash my face. Then crawl in bed and pass out. In Texas I was able to sleep all day long so my body could start to heal. Here at home, I'm trying to adjust my life accordingly and be a mom at the same time.
It's hard for someone who's never experienced this pain to understand. You see me and see my smiling but you don't see past the smile and see the retching pain on the inside and see how I'm physically and mentally exhausted. The only thing I want in the whole world is to be a good mom and wife. Yes, I'd love to be pain free again at some point you realize that you have this for life. I can be in remission, but the pain can always come back. I'm really grateful to have a few people in my life who truly know what I'm going through and can sympathize.
I predict the treatments to take a few months to start working. It's crazy how much my body can change in even 30 minutes. I'm really grateful for this new machine and how it can properly adjust to treat me the way my body needs it to. I'm still fighting with the insurance company because they won't pay for my treatments. I still owe family members about $3500 they let us borrow so i could go to Dr Rhodes. I find myself each day with so much on my plate to accomplish and I'm lucky if one of those things happens. I'll keep you updated soon.

Saturday, May 8, 2010

What a week!

The last few weeks since I've been home have been pretty crazy. It's been interesting trying to schedule time in the day when I can hook up to my machine for 80 minutes. I guess summer coming has been good (not really - I'm not a morning person) because Payton wakes up earlier so he can nap earlier. This is how my day goes: Awakened by Kel alarm clock 4:50 AM, go back to sleep - kiss him goodbye, go back to sleep. Drag myself out of bed (except the 1st week home I was feeling so great, it was easy to get up - not so much anymore). Get dressed. Wake Hailee up and get her dressed. Get Payton up and diaper changed. Feed Hailee and make her a lunch. I'm trying really hard to read our scriptures and say a family prayer every morning before we leave to watch over and protect us all. Be out the door by 7:34 AM so she can wave to the bus lady that picks up the handicap kids down the street. Jump into Big Truck drive Hailee to school, come home make Payton and myself breakfast. Try to clean up the kitchen and pick up the house a little (I still have to be really careful because I have pain in my right arm still and don't want to aggravate it). Do computer stuff while Payton is telling me "Come on, I show you" every 5 minutes. I try to put him down for a nap by 11 AM so I can then clean all the electrode areas with rubbing alcohol then carefully place the electrodes in the proper places (I messed that up pretty good one day when I had a nasty headache). Then I do 40 minutes on my lower body then 40 minutes on my upper body (hands and arms). When I'm done with that, I try to do house stuff but I'm usually exhausted and sleep for a little bit before I have to go get Hais from school at 2:25 PM. After school it's snack time and homework. Try to figure out what the heck to make for dinner, nobody likes the same foods. Dinner is always fun and interesting around our house. Then showers, teeth and jammies. Then Daddy gets home from work and they play for a few minutes if he gets home before they go to bed. Rock with Payton for a few minutes, put him to bed, then off to Hais room. She prays, then we always read a story of part of a chapter book, talk for a few minutes, then kiss her good night. Then I grab my machine and start my treatments again. At least I get to sit with my husband for 80 minutes and I can't leave if he's watching sports center. It's nice to get to spend time with him. Then I get ready for bed and start it all over again.
The first few days I was home I felt so good - I totally over did it and now my body is paying the price. I'm really excited to get my new machine hopefully this next week. I know my frequencies have changed and it's not working as aggressively as it could be working. My sinuses are all clogged up again. Good news... Dorri got to go home Friday! In her text she seemed so happy. I felt very privileged to know her, she called me her angel. You know, I know the Lord put people in our path so we can help each other. The minute I saw her, I prayed that she didn't have to suffer anymore. I'm glad I could be there for her to help easy her burdens and help her when she didn't have anyone there for support. Even though I didn't have my family - I have Trisha and Jeff who welcomed me with open arms to their home. And the Corpus Christi 3rd Ward was amazing, I feel so grateful for the wonderful friendships I made while I was there.
The hardest part of being back is just having to be responsible again for my family. I'm sad my business is gone, but I am at peace with it. With everything going on in our lives - Payton is still sick and I'm trying to get better - my priority has to be me and my family. If that means I don't have an income anymore, that's ok. Kelvin busts his butt working everyday so we can have a good life and I can be home with our kids. I just be grateful for the things we do have and don't be angry about all the bad/hard things we have to deal with in our life. What's the point of being mad, really? God never said it would be easy in this life, he only said it would be worth it. I truly believe that we have trials to make us a stronger person. Trials so we can appreciate the good things in life. Trials so we might be humble. Trials so other can receive the blessings for helping us. Trials so we can learn and grow. The last 7 years have been filled with trials for our family, at points we didn't think anything worse could happen but it did, but we kept our heads up and moved forward. We gained testimonies and faith and had peace that it would all be ok and we'd be ok. Never once did I doubt my Heavenly Father's love for me, I know he loves me and understands my fears and frustrations. With everything that happened at some point you wonder how much more you can take, but I always remembered he'd never give you more than you can handle. At church on Sunday, Rachael, gave a great analogy. The Lord is like a personal trainer at the gym. When those weights are heavy and you want to quit. Does your trainer let you just quit and say ok? No. He tells you to suck it up and keep going, he encourages you to keep going, that you are doing great, just a few more. That's how the Lord is...he encourages us to keep going - he'll put people in your path to help you along the rough patches. Before I went to Texas, once day the pain was so bad. Payton had been really sick that day too. I finally got down on my knees and started praying for help because I was at my limits. I have 2 kids and Kel works A LOT. I don't get to crawl in bed when I don't feel good - I put on a happy face and be a mommy. I get angry and mad, but I'm still a mommy and they need me. So I prayed that I was at my limits, you know and for a few hours the pain subsided a little to a livable level. I'm so grateful. Grateful that I can be happy and grateful that now that I'm doing better I can not just put on a happy face but really have a happy face. It's amazing how much pain takes out of you. For those of you, who live with chronic pain, I feel for you and how you find your own peace. Do whatever you can to get to Dr Rhodes, he will help you. I've seen it happen to me but I've seen it happen to lots of people. Anyways, I better go hook up to my machine, the laundry is in the dryer and kids are sleeping. Kel is out of town still on his turkey hunt. He better bring me home a fresh turkey (that he can smoke - I'm not touching it!) for Mother's Day since he's missing it. I'm not mad at least he's having a good time with Chris. I'm grateful Chris is here to be a best friend to him. I know it's so hard that wherever we go I always know people, but I grew up here. He really misses California and all of our amazing friends there! Hopefully one day I can become better friends with Chris' wife and we can do more stuff with them. It's been hard for me to allow people to become my friend the last few years. My pain was so bad, I just didn't need one more thing. Anyways, sorry I blabbed on...good night! I'll try to be better about blogging.

PS... I got some of those Sketcher Shape Ups cause Kathy (she has RSD too) said they really help her feet not to hurt. I literally wear them all day long except when I'm hooked up. They have strengthened my legs and take some of the pressure of my feet. Today I wore regular shoes... BAD IDEA! My feet hurt so badly today. I love my Sketchers!!!

Thursday, April 29, 2010

The Last Few Days

Sorry didn't mean to leave ya'll in the dark the last few days. It's been a little crazy. Monday night after I packed all my stuff, I decided it was probably too heavy and had to repack everything. I actually went to bed somewhat early. I got up and went to Dr. Rhodes for my appointment at 7:30 AM, I actually got there early, so they started to train me on the new machine. It's rally cool and all the things it does. I was on the testing mode for a really long time, then it finally told me that a new protocol was needed. They sent me home with a new protocol. As soon as I got back to the house I hurried and hooked up since I needed to leave for the airport. Trisha came in a brought me some pancakes which were super yummy! She just sat in my room with me and we talked. I finished putting the few last items in my bags and off to the airport we went. Trisha parked and helped me in with my bags since they were so many and they were heavy. I totally wore the wrong shoes - platforms, but in my own defense I wanted to look really cute for Kelvin. I checked in and went to my gate. the guy that was waiting next to me was made because he was headed on a business trip and security confiscated in toothpaste and shaving cream. He was like did they really think unopened toiletries are really bombs? Oh yeah... when I went through security they patted me down and bomb tested my machine. Good times! I passed! I told him what had happened to me. He was really nice. The plane ride was pretty smooth. I couldn't fir my machine under the seat so I had to put it in the overhead and my laptop bag under my seat. They valeted the other carry on since it was a little plane. After I got my other bag back I went to go ride on the skyline to take me to the other terminal. I couldn't wait to just get home. Some ladies came and sat next to me, they'd been trying to get back to Phoenix for a few days now. They had been on a cruise and missed their flight back to Phoenix (the only plane that actually left on time with the bad Miami weather. They were at the airport but still waiting to deplane. They'd had all sorts of bad luck. When we finally boarded I had told them about my machine, so they didn't have issues with me having 3 bags. The pilot decided not to show up so we sat in the plane for 45 minutes with no one to fly us back home. I was sitting next to an executive at Pilot. He was very kind. It was cool that I could tell him about Dr. Rhodes because he has a 20 year old son that had back surgery a few months back and it's healing. Hopefully Dr. Rhodes can help him. He helped me get my bags all off the plane. I was trying to figure out in my head how the heck I was going to carry all 4 of my bags to meet Kelvin outside. I was walking out of the terminal heading towards baggage when I felt like someone was following me, I turned a little and saw a man in a red shirt, then on a double take realized it was Kel! I gave him such a big hug! The of course I kissed him. He helped me with my bags and we went to baggage claim to get my other suitcase. The we walked out to Big Truck which he had the shop detail and clean for me. I did however notice the Arizona pinstriping on the passenger side that wasn't there previously. I texted my mom to let her know we were on our way home. I told her not to tell the kids. When I walked through the door they were in the kitchen and didn't hear me come in, Payton was the first to see me. He ran down the hallway "Mommy!" and ran into my arms, then Hais came running around the corner. She was crying a little. She was so happy I was home. I loved to be home again. I missed my kids so much! After dinner I put them to bed. It was really nice to be able to lay in bed with Hailee and read to her. Skype just isn't the same quality time. When I was finished I hooked up to my machine. It's going to be challenging to figure out the machine schedule with the kids. I didn't even check my emails, just went to bed. it's nice to be in my own bed again. I missed my pillow!
I have to go get Hailee from school, so I'll finish yesterday a little later when I get time. I'm home safe though and I am so grateful for Trisha and Jeff and their kindness and love for me. Trisha is definitely going to be a friend for life!

Monday, April 26, 2010

Should I Stay or Should I Go???

I got up this morning and went to Dr. Rhodes. Since I didn't have my appointment yesterday I wasn't sure what time I was supposed to go in, so I went at 9 AM since that's my usual time. Nope it was at 10 AM. I could have slept another hour! Shoot! But they saw me early, since I had really severe pain from my sneeze, they tested me and put me on a new frequency. Dr. Rhodes came in and talked to me. He really wants me to stay through the rest of the week and maybe into part of next week until the machines come in. Especially since my pain isn't 100% gone, I was so torn about what to do. I started crying. He said I could go home and come back in a few weeks. They just want to be able to train me on how to use the new machine.
I came home crying because I don't want to stay. I want to be home with Kel and the kids. There's bills that need to be paid, work to be done, my kids need me. I talked to Kathy - she told me to stay. I called Dr. Rhodes office and asked if they can train me tomorrow morning. Tamara went and checked and Sara can train me as best as possible tomorrow while I'm there. I check my account online and after I pay them for all my visits ($100/day) I'll only have $283 left in the medical account. I can't afford to stay anyways. I prayed about it a lot and I need to go home and I feel peaceful about that decision.
I took a shower then a nap for the rest of the afternoon and felt much better. I ate dinner and finished my laundry. I started to pack. I hate packing - really it sucks. I talked to Kel, he said Payton was really upset when he left. I read to Hais and then helped Trisha with her wedding album. Now I'm sitting here hooked up to my machine. And then I get to repack because my suitcase is going to be overweight. Agggg... This is my fun night - but glad it's my last! I'm so excited to see Kel and run into my house to see my babies. I miss them so much!

Sunday, April 25, 2010

Our Peaceful Home

Well, I always have good intentions of going to bed early but that seems to never happen. I never did adjust to Texas time - who could they are 2 hours ahead of Arizona! So i go to bed when I usually would in Phoenix, but get up on Texas time. It's so not a good idea! Especially when you have a Dr. appointment at 8 AM and church at 9AM. I set mu alarm for 6:50 so that I would have plenty of time to do my hair and make up, 7:30 rolls around and I figure I should probably get out of bed. I hurried and got ready with half frizzy hair. Quickly ran the flat iron through it - still frizzy. I ran out the door, got in the car as was half way to my appointment when I got a phone call from Sara at the office that all appointments were canceled today because there was no power in the entire building. So I got up early for nothing. She said just stay at the same protocols and frequencies as I have been on for this last week. I got back home and laid in bed messaging with my mom until Trisha was ready for church.
Sacrament was great, missionary farewell. He strayed from the church for a few years but now at 22 he's back and ready to serve the Lord. Dora came and found me in sunday School to just say hi, she's so sweet. I really like her. They were discussing Number 11 in class. I LOVE this wards relief Society. The sisters are so kind and so nice. Everyone is family to each other. The sister that was sitting next to me hugged me and said I'm so glad you are still here. They really have made me feel so welcomed. Afterwards, I told the RS President thanks for all her help while I've been here. She was sad I was already leaving, but said to make sure Kathy contacts them when she comes to see Dr. Rhodes. At home, Jeff made lunch, then I went and did my treatments and took a nap for the rest of the afternoon. I called and talk to Bill and Kathy. Bill's almost done with my guitar. When he sells them, this style is called the "Ash". I feel so privileged to have a guitar named after me!
I sat in my bed and studies my scriptures, this is something I want to try to do a lot more when I get home. Really have scripture study a part of our daily routine. Personally but with the kids as well. hopefully Kel will join us at some point. Being here has really made me evaluate our lives and the things I want to change. I really want our home to be peaceful and like a heaven on earth. I want our kids friends to want to be at our house when they are older because it feels different. After dinner, Anthony & Lynette came over to play games and eat scones. I rally like them a lot. Dora called while they were here and we talked for quite a while. She made an appointment to go see Dr. Rhodes to help with her Fibromyalgia. Trisha and I talked for a little while about life. She has a rally good perspective on things and I'm always grateful for her listening ear and her input.
Hailee was ready for her story so I read to her. Payton kept telling me that the train in his book was broken and the car crashed! He's so funny. I got to talk to Kel for a few minutes. He loves to drive me crazy and kept telling me he was going to finally go get the mail. That is my one thing I hate him to touch - the mail. He messes it up. He half opens stuff and doesn't throw the trash away. He'll probably get it and leave it on the desk for me. He just likes to threaten me, silly boy. Well I got 30 minutes left... good thing because I have had to go to the bathroom for the last 35 minutes. Good night and only 2 days until I'm home!!!

Saturday, April 24, 2010

Jellyfish on Shore

I woke up today and was pretty amazed how little pain I have in my body. I truly believe that Dr. Rhodes is amazing and am so grateful for his gift and knowledge to heal people from this awful disease. I see people everyday who have suffered so long from this RSD and even children and teenagers. it breaks my heart how badly they suffer. I'm so glad I've only had to suffer 8 months. Actually less than that because I've been hooking up to Kathy's machine since January. When I started on her machine my toes were curled and I could move them, extremely painful. It felt like my foot was broken, it hurt to walk, drive, move it, not move it, everything I did hurt. I'm just so grateful. I went for my testing again today - they tested upper body again. What do ya know... I get to stay on the same protocol and frequencies. My body is really responding well to the protocols he has me on, they are working great. I just have to make sure I be smart and not get injured. Or let the kids jump on me or it will all come back instantly and I'll have to start all over.
When I got home, I hooked up and watched a movie. Trisha was trying to do her toe nails but she's got a preggo belly so I took her polish off for her. Oh I miss doing nails!
Then we got in the car and drove to Padre Island. I think we were at Padre Balli Park Beach. It's crazy, you can drive your car up to the water here. So different from Cali. Oh, the water and the waves. I love the waves, I could sit there all day and stare at them. We took our shoes off and went to walk on the beach. Jeff was so crazy - he kept walking further and further out into the water. It was to his shoulders! I got soaked too, but only just above my knees. A huge wave came up on shore and soaked us. The water was great, I would have loved to go for a swim and I don't even like going in the ocean. It was so warm and inviting. As we were walking there was a jellyfish on the sand. I got excited and took a picture, the lady near by said it was a cabbage jellyfish and they don't sting. There are the one's the sea turtles eat. Walking further I actually saw 3 more. There was also this super fuzzy worm, it was pretty big. I love this picture - I'm going to turn it into a black and white. I picked up a few shells for Hais to keep in our shell candle holder in the kids bathroom. On our way back to our chairs, there was this guy making a sand sculpture of a shark eating a human. it was awesome! So we took pictures with it, it wasn't finished yet, but it still looked cool. We actually talked with them for a little while. He owns Davies Trees. He's actually done the tree work at the San Antonio, Nauvoo, Salt Lake, and one other temple. Pretty interesting. They were such a nice family! We went back and sat in the chair for a few minutes watching the waves. Then we sat under a little ramada when it became available. Then we drove to this cute gift shop and I got a few things for the kids. I came home and took a shower, yuck I was covered in sand. I'm totally going to have to scrub the shower, there is so much sand left behind. Then I took a nap and watched another movie. Trisha wasn't feeling well, she gets really bad pains in her stomach. I went out to see if she needed anything. I decided to pain her toes for her so I gave her a little pedicure. She's never had anything but pink or red on her toes before. I couldn't believe it! So I painted them purple and put a cute white iridescent daisy on her big toes. they turned out SO cute! Then we decided to go to Whataburger for food. It took them forever to make my burger (another hour and I could have had breakfast food, too bad it wasn't a guy at the register, I could have gotten him to allow my to get pancakes - girls are harder to convince how much you would rather have pancakes than a burger). Anyways, since it took forever - they gave me free fries.
Oh yeah... and Kel called while him and Payton were at Jack in the Box. He said Payt was so insistent on there being icecream cones there and he kept telling Payton no they don't have ice cream. he finally realized that Payton thought jack was an upside down ice cream cone. He's such a funny little boy!
I got to talk to Payt for a few minutes on Skype - he made faces at me. I then went and finished Trisha's manicure. I did french tips with daisy's on each finger. It looks so good. She never does her nails so it was a real treat for her. I'm so glad I could do that for her, I miss doing nails. Hailee called while I was finishing so I called her back, we read a story then here I am now blogging. I'm trying to decide if I should straighten my hair tonight or just do it in the morning. I hate waking up early. My appointment is at 8AM and i have to be ready for church when I go because church starts at 9AM. Well I hope you enjoyed my day!