Tuesday, June 12, 2007

Another one of THOSE days…

I would say that 95% of the time, I’m happy, go-lucky, accepting and determined about my situation. Today was one of the 5% of days where everything is frustrating and overwhelming. I know I’m usually happy and smiling and it’s pure and true. I am truly accepting of what God has chosen for me as my path, but it’s hard.

He gave me my cross. Most days, He helps me and it's not so bad. Other times, like today, it’s extremely heavy.

But I find solace in the love and support from everyone. Here’s some insight into some of the frustrations that went into my head today.

When I woke up this morning, I had a weird feeling. It was almost like this whole ordeal was a dream. I woke up half expecting to roll out of bed and wake up from this dream. Everything was so normal. I woke up in my messy room, in my own bed. But then I tried to move, and nothing... Sometimes this experience is just so surreal.

-My parents, Ivette and I checked out Project Walk in San Diego on Monday. This is supposedly a very innovative program that tries different techniques to help people regain function and walk. I am a little skeptical because of the aggressive therapy. My physical therapists in Colorado always told me to be weary of joint integrity. Also, seeing some of the people “walk” per se was odd as it seemed that they walked on spasms rather than being able to walk normally. There are still a lot of questions in my mind, but overall I was impressed by the program and attitude of everyone there. However, it is really expensive ($100 per hour) and is not covered by insurance. I may try it, but will probably try rehab at UCLA first. I became frustrated yesterday thinking that I even have to go through something like this and dedicate so much time and money for something that was so easy. Now I have to maybe drive 2 hours each way and spend hundreds of dollars for months to try to get better.

-It’s been impossible getting an appointment at UCLA for neurology and rehab. I have been calling UCLA every day since I got back from rehab trying to get an appointment. They finally gave me an appointment yesterday for July 17. It’s really frustrating because I want to move forward and keep up with everything that I did at Craig, but because of the red tape, I have been unable to see the doctor to set up my outpatient rehab schedule.

-I have had some improvements as listed on my last blog and want to capitalize on these. I am now thirsting for outpatient rehab, but it’s been impossible with UCLA. I love that Ivette helps me with my exercises that we learned at Craig, but I’m interested in being formally evaluated to see how much I have actually improved. I hope my improvements aren’t for naught.

-It’s frustrating that I have to allocate so much money to all of the treatments, supplies, etc. Before, I had to worry about all of my normal expenses and payments, but now I have to factor in so many medical necessities. Also, I have had some acupuncture/reflexology and loved it and felt great after it. However, I have to monitor how often I do it because it’s $90 per session. If money were no issue, I would probably do it every day, but unfortunately it is. I am extremely lucky because my parents have made many sacrifices and have helped out with many of the expenses, but I know they have their own expenses to cover. It’s frustrating that we even have to incur these expenses that we never had to before.

-It’s been impossible playing the insurance ballet. I have tried and tried with the suppliers and insurance to get some rehab equipment approved that is sometimes approved. I want a standing frame and FES bike. The standing frame allows me to stand while providing support and is useful for increasing circulation and bone density and the FES bike electrically stimulates my muscles to build muscle mass and keep my joints moving. I used these a lot in Colorado, but haven’t used them since, and it’s frustrating because I really want to because I know they are good for me, but it’s been impossible trying to get these or use these, especially since UCLA has been so unresponsive.

Long Beach Condo and Life Changes
I stayed in my condo in Long Beach last night. It was so tiring and exhausting getting up the stairs into the unit and then going up another flight to get to my room. It truly would be impossible to live there with all of the work that I would need to put in on a daily basis. When I was brushing my teeth in my bathroom, I got really frustrated because I couldn’t do such simple things. I remember where I could just jump in the shower real quick and get ready. I couldn’t even take a shower there because we didn’t have the supplies and it would have been difficult to get into the shower. Also in the bathroom, I couldn’t reach a lot of things I needed. And I can’t really gargle anymore because it’s really difficult for me to do the motion of putting my hands together and bringing them to my mouth without losing my balance. I have to take one hand and take sips of water to gargle or wash my face. It was sad because when I was upstairs, I was stuck and couldn’t even really navigate my room because of the setup of the furniture. I couldn’t really go down the stairs safely alone, so I was stuck in my little space. It’s frustrating being so reliant on other people right now. I know other people have their things to do. I used to be so independent. Now I need someone to get me a tissue if I can’t reach it even. I can’t wait until I get my car modified so that I will be even more independent again and not have to be such a burden on everyone.

It’s frustrating that I am forced to move into an accessible apartment and rent out the condo and pay double in the process. I am FORCED to move because of this. I am leaving my sister and my neighbors who became good friends. I can’t live there. It’s sad. And when I do move, my place will be completely accessible, but other places aren’t. My friend Brian said that I would be living next to his sister, another one of my friends. It doesn’t matter because she lives on the second floor and there is no elevator. I can’t go over to her place to hang out. Well, I could, but it would be such a big chore to overcome the stairs. I can do ANYTHING that I did before. It’s just that some things take more time and energy. The same thing happened in Texas. Ivette’s friend just bought a new condo, but it was also on the second floor. We were invited to check it out, but Ivette went alone because I didn’t feel like scaling all of the stairs.

Yesterday I sneezed and it didn’t hurt. When I first had the injury, it would kill to sneeze, cough or laugh. It would hurt so much since that area of my stomach didn’t work. But now it feels almost normal.

Return to Work
I would be open to returning to work. Physically, I feel relatively ok. However, sometimes, I easily fatigue. I’m just nervous about my rehab schedule and my work schedule and if doing everything would be exhausting. Even when I left rehab, I thought to myself I would be able to return relatively quickly. But life is just coming at me 100mph right now and there is just so much to figure out. Physically I may be ok and confident, but psychologically, I still need a little time to organize my life and learn to live in a chair for now. It’s especially frustrating that I have not been able to start with my outpatient rehab because I have no idea what that schedule is like and how I would balance that with work. I have talked to some co-workers and they are very anxious for my return and I am too, but I need to make sure that I am 100% ready to return when I do. However, with the aforementioned expenses, I may be forced to return to work sooner than I’m ready.

As written in my other post, the Santo Niño said that I would “walk better” in a week (yesterday, Monday). Monday came and went with no noticeable differences. I was pretty excited about the premonition but am left only still hopeful and waiting. I am patient, but it’s very trying. And right now, I’m lost on my recovery. I don’t know what to do. Some people say that my recovery will take up to 2 years, if ever, and others say that I need to aggressive therapy for a while. So do I continue my life like normal and return to work, etc. or do I go to therapy full time and put life on hold and focus completely on my injury? The psychologist at Craig said that I need to find a balance with therapy and life. It’s tough right now, especially just after the injury, to know where that balance is.

Oh yeah…happy 3-month injury anniversary. 3 months ago today I walked last…

Sunday, June 10, 2007

More progress...EXCITING!!!

I'm sorry it's been so long since I last posted. Just trying to get everything together here at home.

I want to thank all of you who came out to the welcome parties. It was so nice to see everyone again and see first-hand the support and love behind me. It was so nice resuming to some sort of normalcy and being back in public after being in rehab for so long. It meant so much seeing everyone who took a break from their lives to share some time with me. Thank you for coming out whether you live close by or far (some people came out from San Francisco and Washington DC). It really hit me how important everyone in my life is to me and how grateful to God that I have each of you in my life. I really had such a good time and was smiling cheek to cheek at seeing everyone again. I also want to give a big thank you especially to everyone who helped set up the parties, namely my sisters, Judy and Jennifer, Ivette, and my parents and my brother James and his family for hosting. Pictures are to follow, I just need to find a place to post them and I will attach the link here.

After the parties, I have been trying to figure out life.
Outpatient rehab: I have been trying every day to get an appointment with UCLA neurology, but first they needed me to fax a referral letter, then they had to request my medical records, then they have to review my medical records and now I'm still waiting to set up a consultation. I started calling the day I got back to Southern California and they still have not given me an appointment. Frustrating... On Monday, I will head to Project Walk in Carlsbad to see what they have to offer. Although this program has gotten good reviews, it is not covered by insurance at all and is relatively expensive, so I'll see if I want to do it.

LIving situation: I have been switching back and forth between my sister, Judy's, house in Camarillo and Ivette's house in Pasadena. Although I was living at my condo in Long Beach with my other sister, Jen, I can no longer live there because there are about 20 stairs to get to the unit and then about another 12-14 to get to my room. It would be nearly impossible to navigate those stairs on a daily basis. Imagine if I forgot something in the car or whatever after I had just scaled the stairs... Anyways, ever since I returned home, I have been searching for a new apartment with Ivette. Judy's house, Ivette's house, my parents' house, James's house, etc. aren't really ideal for various reasons, including the fact that I don't fit in all of the doors with my chair, namely the bathroom doors. Ivette and I found a place in West Los Angeles that fits all of our criteria. It has hardwood floors to make it easier for me to navigate, all of the doors are wide enough that I can fit everywhere, it has an accessible gym so that I can continue my fitness therapy, there is a pool so that I can continue my water therapy and more. We are going to move in there on June 20. However, as you can imagine, I have the challenge of keeping up my payments for the condo and paying for the apartment until I can get the condo rented. Anyone need a place in Long Beach? That, in combination with the medical expenses...don't expect to see me at any fancy restaurants anytime soon.

Texas: I went to Texas with Ivette for a couple weeks for a number of reasons. It was a nice break from all of the hectic things going on in Colorado and California. It was nice to get away and relax a little bit. I was still able to keep on top of things that I need to take care of though. While I was there, Ivette and I went to the gym a lot and swam a lot as well. We went to acupuncture twice. Ivette's family visited me in Colorado, so it was nice to return the favor as well. Ivette's brother, Kennett graduated from high school, so we celebrated that. Additionally, Ivette's dad found out about a healer in Mexico and we drove 3.5 hours each way to see him. More on that in a moment...

Progress: I have had some noticeable improvements, which is very exciting!
1. When I fly, I'm the first one on the plane and the last one off. One of the reasons is that I need to use the aisle chair (a really skinny wheelchair) to transport me to my seat. When I first left Hawaii to fly to Colorado right after the injury, I noticed that my legs flopped open and needed to be strapped to stay closed. However, on my most recent flight, I noticed that my legs no longer flop open uncontrollably. I don't know if I am holding them in or just thinking about holding them together so they don't flop, but they are now controlled and do not just flail out.
2. Ivette's dad, Jaime, Ivette and I went to Mexico on May 30 to see a healer in Agujitas. It was very interesting as he taped little balls on pressure points on my back and told me to keep them on for 5 hours. He also gave me some medicine. He said that in 3 days, I should see some improvement. On Saturday, June 2, I was looking for any improvements all day. Finally at night, I noticed that I had my knee reflex! This is when you hit that little funny spot on your knee that makes it kick up. I know the doctor in Mexico tested this on May 30 and it didn't work. However, on June 2nd, it did! Ivette said that she remembered that this was one of the very first things to go the day of the injury. This is a great sign.
3. On Tuesday, June 5, Ivette and I went swimming for therapy again. As she was with me the whole time in Colorado, she currently helps me do therapies while we wait for UCLA or other outpatient services. We actually devised a way to help me stand up in the water. However, she has to support my knees and hips so that they don't flail out uncontrollably. We had done this a number of times over the past few weeks. However, on June 5, we noticed that she didn't really have to support my hips anymore! She had to stabilize my knees, but my hips seemed to be a lot more controlled. Another great sign.
4. On Monday, June 4, I spoke with my aunt's co-worker's friend, who is a very religious lady from the Philippines and is also a healer. It was a very interesting and touching experience as she was in a trance and quoted to be actually "Santo Nino", speaking first person as Jesus to me. She stated that I would be "walking better" in a week. We will see! Keep on praying!

So, that's a quick update. Sorry again for the delay in update and lack of pictures. I will try to update more often and I will soon post more pictures.