update 4/21/2010

I’m not exactly sure where to start. So much (good and bad) has happened since my last blog or vlog. Well starting with some of the good stuff, I had an amazing Holy Week and Easter. I had a blast finding eggs at the Living Room, and hiding them for the kids on Easter. I’ve been having a lot of fun at Church lately and always seem to feel better there. I found out just the other day that I have reversed my Osteoporosis to Osteopenia, and I am (fingers crossed) close to finally getting HGH treatment started. As far as my bad news goes, my future with my Ileostomy is uncertain. It turns out there is not a single colo-rectal surgeon in Houston or surrounding areas that will take my insurance. I have been pretty depressed lately because of this news, and the uncertainty of my future. This was supposed to be a temporary thing, not permanent or semi-permanent situation.  I’m not sure what to do with all of this. The other day along with the good news of my osteopenia, I also found out my white blood cell count is still slightly high, and I am afraid that has something to do with my Ostomy. Lastly, I found out that with the last steps of getting HGH, the company has to call Medicaid to get approval for it, which is a little scary. Well, I guess that’s about it for now. I’m sorry I haven’t posted anything on here or YouTube in a long time; I just have either been too busy, tired, or depressed to feel like doing any of that. Please keep me in your prayers, and any tips or suggestions regarding any of the above are appreciated.

human nature?

I’m tired of feeling sorry for myself. I am constantly comparing myself to other people my age. I envy my friends and acquaintances that are in school, have careers, friends they see all the time, married, have kids or just have some kind of average lifestyle for people our age. My life revolves around getting Mom to take me places, getting help with other everyday things_­­, and going to appointments. The only real social interaction I have is at Church and Church functions. I miss school more than you can know. The funny thing is; people who have a life like I mentioned above tend to complain about not ever having a day to just not do anything or go anywhere, as where I complain about the opposite. Why does it seem not many people are ever completely satisfied with themselves or their lives? I guess it’s because we are all human beings and it’s just in our nature to never be fully satisfied. We are all humans who sin and have a hard time appreciating the good things in our lives. I love God with all my heart but sometimes I wonder what exactly it is he wants me to do with my life. What are your opinions on this?

surgical update

well, I saw a new surgeon last week, and he questioned the thinking of both my prior surgeons decisions. He asked why my first did not perform a seton surgery instead of a fistuloctomy, because the Seton (all though more painful and long) has a lower chance of causing incontinence then a fistuloctomy. And he asked why my last surgeon gave me an ileostomy instead of a colostomy. We did not know, and therefore had no answers. Though he did not say it directly, it sounded like he thought both my surgeons made mistakes (aside from the one we already knew my most recent one made). So now, Mom and I are to get together all of my medical records from both surgeons and surgeries including pictures of tests they performed like my ultrasound, and bring them in or fax them to him, then see him to see what he can do for me (if anything) in about 2 weeks. well, that's my life and what's been going on for me.

feelings

I know that I am not the only one who has the same or similar problems as I do, or have the same feelings, worries, or thoughts that I do. Then why do I feel so alone? Am I the only one who assumes way too much, who overreacts, manipulates and lies to get their way? Am I the only one who sometimes can’t stand themselves for the things they think and/or do to themselves and/or others. How is it that I can be so extremely selfish one minute and so caring and selfless the next. All I want is to feel normal, to not feel like I’m some kind of outcast. I want to have the same kind of lifestyle as my peers. I want to be back in school studying, doing homework, and making good grades. I want to be able to drive, and go where I want when I want. I want to be completely independent, and not ever need anyone (human of course, I’ll always need God) for anything. Sometimes I feel like a terrible person, and others I feel great about myself. I am sincerely worried about my abilities to pursue my dreams of being a special education teacher because of my severe impatience. I feel as if I would be more patient with these special children, but am worried that I wouldn’t. There are many different things that I am good at, but either they’re talents that are unrealistic to pursue a career in such as singing and acting, or they are things I don’t enjoy enough to see myself having a career with them like writing. Above all I wish I could have more patience with in my life, and how quickly I obtain my goals. I also need to learn how to be okay alone. Whenever I am alone I get depressed, sad, and bored. Most of the time I feel as if I need to be entertained 24/7, but there are other times I just don’t feel like moving or doing anything, and I have to literally force myself or do something somewhat drastic to do something or get something done. Anyways, I just felt like getting all this off my chest and into words. So there it is.

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My surgery

Well here it is, the whole story. I went to get surgery on Thursday January 15th, 2009 to create my temporary ileostomy bag, to prepare for my sphincteroplasty surgery to repair the muscle cut during my fistuluctomy in 2008. A couple months after my sphincteroplasty, I will have surgery to reverse or resection surgery for my ileostomy. Anyways, I had to arrive at UTMB here in Galveston at 5:30 am, and all my pre-op and surgery went well. However, after my surgery they did not give me my needed cortisone steroids. At first Mom and I didn't think much of it, but as the night progressed and they continued to give me morphine for my pain, I developed the worse migraine ive ever had. Mom and I asked for some tylenol for the migraine, but everytime we asked they said theyd check to see if it was on my med's list or whatever. Anyways, all Thursday night and Friday morning I seemed to get progressivley wOrse, and still no one would give me anything but morphine. Friday morning after they gave me my usual morning medications I threw them up and then developed a low grade fever that went from 99.2 to 101 in about 15 minutes. After that, Mom told the nurse that I needed some solu-cortef IMMEDIATELY!!! After that the nurse and some of my surgeons staff left to talk about what to do. In the meantime the respiratory nurse came in and pointed out my fast heart beat, and got me some oxygen to help. My ostomy care nurse also came in around this same time to show us how to change and take care of my stoma and bags. I was nauseated, in severe pain from my migraine, and my fever was getting worse. Finally, one of my surgeons med. students did something to make everyone snap out of it and give me my steroids and some tylenol and vicodin. About 10 minutes after i got my steriods,oxygen,and vicodin i was 100% better. My color came back, my fever broke, and my migraine went away. After that they started taking better care of me and made sure i had all the steroids i needed. So, once again my Mom saved the day, and I'm alive to see another day. Mom and I are really nervous now about UTMB and how they handle patients, but they and my surgeon are in for an earful of complaints from us. I'm all better now though, i got home on Sunday, and continue to improve every day. Thank you God!!!

GOOD NEWS!!!

Well, I have great news everyone. I had my colonoscopy follow up appt. on Tuesday and I all my biopsies came back negative for any IBD. Thank God. So, on Jan. 14th I have my first surgery to make my temp. ileostomy bag. Then another surgery a few weeks later to fix my sphincter muscle, then another a few more weeks later to resect the ileostomy. Thank you God for this whole ileostomy thing being only temporary. Other than that, not a whole lot new to report. I got my wii the other day, and have been having a blast with it. That's all for now.

12-24-2009

 

Well we made it here to Walburg. We got here around 12:45pm, and the wind was so bad that the power had gone out. It’s back on now thank goodness because Mom, William, and William’s friend, are going over to a funeral home later to make arrangements for Pa’s funeral. The VA will prepare, dress, and bury him, but will not pay for any service.  So we decided to use the money in Pa’s savings account to pay for a decent funeral service.  So anyways, I guess this is my first blog entry in my first blog series all about my crazy life.