This post has been edited on 03/26/2009 due to the request made by Freedom Scientific’s Chief Finnancial Officer, Roy D. Rafalco. A certified letter was sent to me by Freedom Scientific citing I should remove or edit any disparaging or negative remarks about Freedom Scientific.
Yeah, this is a bit late, as usually, people write these things before the year is out. I wanted to wait for denise’s post so we could both relate our experiences of 2008. In her post entitled, “Introducing Jake,” Denise introduces you to our new way of life as we know it. Below, you will find my account of what happened.
Dear All,
Disclaimer: This letter will focus on the year of 2008 according to my perceptions on what happened during this year. If you’re offended by four letter words, stop reading now! This letter will not be laced with them, but they will be sprinkled throughout. Also, this letter will be mentioning companies and persons that I’ve had interactions with, and I take no responsibility for any hurt feelings, offense taken by persons or companies, or any other interactions that may be taken as hostile. Read at your own risk. You have been warned!
To say the least, this has been a hard year, probably one of the hardest ones I have ever had. No, you’re not going to read about whining and making excuses on how I felt society fucked me. This is the way I interpreted the events as they happened to me.
This has been a year of ups and downs for Denise and me. It started out good with me working and Denise still working to get her SSDI started. We eventually had to go see Congressman Bill Young to get it going. Within a month of that visit, her income came in like a tidal wave.
Denise and I were glad of this uplifting experience of getting what she was entitled to, and we paid back people we borrowed money from, bought things we needed, I bought Station Playlist Studio and Creator Pro for Living on the Edge Radio, and I also got a new computer, as my old one bit the dust. Things were looking up for us. Finally, after struggling and trying to make it here in St. Pete, we were on Easy Street, or so we thought.
As I mentioned, I was working at the beginning of the year for Freedom Scientific as a tech support specialist. I have worked for them since October 16, 2006 in house, when I moved here to St. Petersburg, Florida. Before that, I worked for them as a contractor from November 14, 2005 onward. Denise moved here in April of 2007, house and all. In May of that year, I was laid off due to performance issues. Shortly after my termination, I got my unemployment started. After that, 2008 sort of fell apart for us.
We both tried to do things that would make us feel better. Me? I have been working on getting an internet radio station started before I lost my job. I had goals set of when to launch and who to have on as part of the station. That got set back when I was terminated as an employee. I have been working on getting music, working with the program I use, and getting other elements of the station ready since then, and this has helped somewhat with the pain of what happened.
We have also done things we are ashamed of, or in hindsight, it looks that way. After consulting a lawyer on what I should do about taking legal action, Denise and I got blitzed out of our minds with beer and Patrón. I don’t remember what happened that night, except I puked up my dinner, and poor Denise lost it because I scared the hell out of her. We were both in the mindset that if we had regular insulin, we would not be here today. If you inject too much of regular insulin, you die, simple as that. That’s what losing your job due to no fault of your own will do to you. After moving here for a career that got cut short, and moving family down, the effects of the events tend to mind fuck you. Anyway, since then, we haven’t done that again, as we scared ourselves bad.
After that, things were quiet for a few months until September when we were in Albany, New York helping a couple friends, Kristten and Jeff out. Originally, Denise was supposed to go up and help out with caring for the kids, as Kristen had surgery on her ankle, while I stayed here and worked. I was going to see her on the weekend, maybe twice. It turned out that I was able to go with her for the entire month. While there, I got sick, not able to eat, drinking water like it was going out of style, shitting every couple hours, and just feeling like crap. I thought I picked something up from the hospital while visiting Kristen, but boy, oh boy, was I wrong.
While in Albany, I discovered I had blood in my shit, so I called my doctor here in St. Pete. He had me pick up some medicine in Albany to see if that would help with the diarrhea. I also made an appointment on October 1 to go see him. While in Albany, Denise and Kristen tried to get me to go to the ER. I couldn’t do that, as I had no insurance. Blood was spotted in my stool, so that’s why they were encouraging me to go to the ER. I told them I would have rather gone to the ER at home.
When Denise and I were on the way home, I felt like I was dying. By this, I mean I was not able to walk or run as I used to. We were in JFK going from the plane from Albany to the one to Tampa. We had to run to make it. I tried my best to follow Denise with my Leader Dog Max, but I was getting out of breath and feeling dehydrated to the point I felt woozy. I held on to Denise’s backpack and heeled Max while following her to the plane. Once onboard, I got some water and I felt better. While in Albany, I must have drank 4 or 5 glasses of water a day. We landed in Tampa, and Denise’s sister picked us up. She said I looked like shit. I asked her what she meant, and she said I looked thinner and pale. We went to Ale House to eat, but I could still barely eat anything. Not being able to eat anything was going on two and a half weeks at that point.
The following day, Denise and I went to my appointment. We saw the PA, Jennifer, who contacted my doctor after examining me. He recommended I get admitted to the hospital for tests. Denise’s sister took us to our appointment, and was very supportive of us during my hospital stay. She brought Denise back and forth to and from the hospital a few times. Denise and I were scared, not knowing what was going on with my digestive system.
I got admitted, and had a colonoscopy the next day. As you will see, things happened fast and heavy for the entire month of October.
The results of the colonoscopy were not good. I had colitis, the worst the doctor had ever seen. My colon was inflamed and was in danger of perforating from my body, and I was in danger of losing my colon. I was not told this, but Denise knew, and she hinted about me losing my colon that day and the next. Also, we tried relieving the gas that was in my belly. That was the last good fart I had. It must have lasted twenty seconds.
On the next day, my breathing got progressively worse because my stomach felt like it was full and I could not take in any deep breaths like a sigh. I was bent over while sitting up and I could not roll over on my sides to try to get comfort from the pressure on my belly. I was given a PIC line, and had to get an X-ray for feeding it to the correct vein. The X-ray showed that my colon was perforated, and emergency surgery was necessary. I didn’t know what to think, as I knew nothing about what was to come. All I knew was I was scared and so was Denise. We prayed a lot during that ordeal.
At 6:00 PM, I was wheeled into surgery and prepped. Denise was there with me, but I don’t remember how long. The medicines were kicking in and I was off to Lala land.
The surgery took about three hours to complete. I had no idea of what was done to me for a couple days. I do remember some things, but the memories are like a haze. I remember waking up in recovery and Denise was there. I evidently made jokes and was my usual self. My next memory was the next day. Again, Denise was there, and I asked her what was done to me. I don’t remember her telling me, as the memories are still fuzzy. I was told that I watched football, called Amanda on the phone, thought my leg was Denise’s boob, and was enjoying making references to shit. Denise told me I suggested she take my shit home. It must have registered in my brain what was done to me, being I made that reference.
The next memory I have was finding out I had a catheter attached. I remember seeing it and asking, “What the fuck?” Denise told me it was a catheter. Still, at this point, I had no idea of what was done to me.
I guess you all are wondering what was done to me, so here it goes.
I had my colon removed, and I also had a massive amount of gas, stool, and bowel in my stomach. All of that was removed, and I had a colostomy bag put on me. My small intestine was rewired to the right side of my stomach. Now, I have to wear a bag to catch the waste. Yes, it does sound disgusting, but that is what I have to do at the moment. There is a possibility of a reversal, but for those of us who have the colon removed; it most likely will not work. I will see a specialist about this, and we will discuss the possibilities. The doctors think it will work, and I am not opposed to the fact that it may not work. This is a new way of life for me, and yes, I am still struggling with the emotions of the change. Nobody in their right minds cannot tell me they would not be fazed by this.
For most surgeries of this nature, there is a period of knowing what will be in store for you. For me, I had no idea I would be wearing a shit bag, as it is sometimes called. Now, imagine the shock of waking up and finding this taped to your stomach. You would think I would have been in shock, but I have no memories of that. It was just there, sort of like you would expect having tape on you after surgery. When I was told what it was, I took it like it was nothing.
After the surgery, I was moved at least six times in the hospital to different rooms. I was in two rooms in ICU and four rooms after that. St. Anthony’s took great care of me, and all the staff were nice to Denise and me. They even gave Denise meals, like I would get.
During my stay, I was put on a liquid diet for a few days, and then gradually, I was put back on a limited diet. I could eat what I wanted, but could not exceed 1200 calories.
I was in the hospital three times. The first time was from October 1 to October 14. The second time was from October 17 to October 23. The last time was from October 30 to November 3.
During the first stay, I had to work at getting up and walking. My stomach muscles gave me hell, as they were messed with during the surgery. They made it hard to sit up on my own. I had to learn how to sit up without putting pressure on them and the surgical wounds. I also had to train my stomach how to eat again. At first, I was barely able to finish my meal since my stomach shrunk. It took about six weeks for it to get back to normal, but now, I can eat and drink as I used to. Being I had no colon, I had to keep the NG or Nasal Gastric tube in for four days. Once I had it out, I was put on a liquid diet. My meals consisted of jell-O, chicken or beef broth, and Italian Ice. I also had TPN running through the IV to supplement my need for protein and food. I started down the road of recovery, and it was a hard one.
Denise and I were very fortunate to have support from a friend from back home, Elizabeth. She came down to be with Denise and help out right after my surgery. She stayed for five days, going to the store to pick up things we needed, brought Denise back and forth from home to the hospital, and was there for Denise. We all were scared, not knowing if I was going to live or die. We all prayed for my health, and I pulled through.
The prognosis was I was going to be very sick after the surgery, and my temperature was going to go up. When I came out of surgery three hours later, my temperature was 101. When I got to my room in ICU, my body temperature never went above 99. That was a miracle in itself, according to the doctors. I also had the possibility of getting Sepsis because of the waste entering my digestive system. Well, I’m sitting here today writing this letter, and thank god nothing of the sort happened.
My parents came down to see me as well. I tried to get them to stay home, but they wanted to see me. I didn’t want anybody to see me in the state I was in: thin, IV’s in me, tubes in my nose, bandages on me, and just feeling plain helpless. That was not me, and I didn’t want anyone to see me that way. They did show up and stayed about a week. They also helped Denise get to and from the hospital. I’m glad they came after all, but at the same time, they are older and not able to do as they once did.
I did receive calls from Amanda, Cory, my brother Edward, and Eric. We talked with Amanda daily, updating her on how I was doing. Denise received calls from Joe, and I got text messages from him and we both updated him on what was going on. Denise e-mailed other friends of ours and updated them on my condition. We got a lot of support calls and e-mails from back home from our church we went to there, St. Barts.
On October 14, I was discharged and went home. My parents were still in town, and they took me and Denise to Wendy’s to get dinner and a Frosty. The next morning, Denise and I had breakfast with them, as I wanted to do this since they were in town. After we had breakfast at Bay view Restaurant, they headed back to Augusta. Little did I know I would be back in the hospital, and so would my mother. She has congestive heart failure, and I was told she almost didn’t make it back to Augusta.
Two days later, I woke up, went to get something to eat, felt I needed to take a shit, went to the bathroom to do just that, and bled out my ass. We had to call an ambulance because when I stood up, I passed out from losing so much blood. This was the second time I was near death.
I got checked into the hospital yet again for day #15. ICU was calling my name, and I stayed in ICU for five days. On Tuesday, October 21, I was moved in the middle of the night to a back room where the overflow patients were kept to wait on other rooms. I first went to have my rectum looked at to see if there was a rupture inside. From what I understand, my rectum looked very bad, so that is why I had to have more tests done. I was given a battery of tests to find out why I was bleeding, including the dreaded Barium Enema. Talk about feeling violated! Imagine a tube with lube being thrust up your rectum, turned every which way to get pictures, and you being force to turn on your sides and back. The tech said it would last about 2 or 3 minutes, but to me, it felt like 2 or 3 hours.
I waited the whole day in this back room for a room to open up. Around late afternoon, one did open up, and I was taken to it. That Tuesday, I was also taken off the liquid diet they had me on the entire time I was in ICU and switched to regular food. Speaking of hospital food, St. Anthony’s has one of the better tasting kitchens. It’s not bland like other hospitals I’ve been in. The food actually tasted like time was taken to prepare the food and everything was freshly cooked and not taken out of a freezer.
For two more days, I stayed in the hospital and got introduced to suppositories and enemas. I had to have enemas two times a day and suppositories four times a day. I also had to take about four other medicines by mouth.
I was discharged on October 23, while the Tampa Bay Rays played in the World Series. Over the next six days, I was recuperating and having to get medicine that was way above what we could afford. Thank god for people we have in our lives that we can count on. For example, for a ten day supply of Canasa, the suppository, it cost us $317. This is without insurance. Denise and I also enjoyed the World Series. I told the doctors and hospital staff I wanted to be home for the World Series. Well, I took in Game 1 in the hospital, missed almost all of Game 2, and took in Games 3, 4, and 5 at home. I got my wish for that. Little did I know, the next day would be a return to the hospital for the same reason.
On October 30, Denise and I woke up, and I felt the need to go shit again. At first, it was normal, but I started to feel like I was pissing out my ass. This was attempt #3 at dying. Again, a trip to the hospital was in order by ambulance. This time, I went straight to a normal room, not ICU, because the bleeding was not as bad.
Over the next five days, I was issued another round of various tests to see what was going on with the bleeding, including a look up the rectum by my GI doctor. He said the rectum looked a lot better than the last exam. He also thought I may have had Crohn’s Disease, but fortunately, that was ruled out. I was diagnosed as having Ulcerative colitis and Proctitis. I had a Bleeding scan done and no blood showed up.
The doctors decided to take me off the Canasa and switch me to a hightter dose of Pentasa, a tablet I could take instead of the suppository. I went home on November 3.
Since I got home the last time, I have made a recovery. As of this writing, I am fourteen weeks and some change removed from the surgery. I do not have to have the wounds taken care of as I did when I got home. We had Home Health stop by two times and care for the wounds. I am now back to full strength, and I can start working out again.
Oh yes, I forgot to mention: I lost almost 50 pounds from this ordeal. I went from 209 in the beginning of September to 160 in the middle of October during the second hospital stay. I have gained back 30 pounds, and I no longer look like a skeleton as Denise told me.
We’re happy I am still here, and we both feel God has been there for us by keeping me here. It was not my time to go, as I still have things to do here. Just what is that? I still don’t know, but with the state of the economy, it looks like I won’t know for some time. I thought working for New York State would be it, but now, I do not want to move from here because of the good medical care Denise and I get. There is nothing to offer a blind man for employment, and anything here in St. Pete that is blind related is controlled by the NFB, or as we call it, Nazis for the Blind. If we feel bad about anything, the way the economy is and the lack of jobs out there mind-fucks you and makes you thing you’re not worth a shit. Finding out most work at home opportunities are a scam doesn’t help either. The only thing I can get right now is something from Living On The edge Radio, but I’m not counting on that for total support. Every little bit helps though!
Denise and I are happy to be here. We plan to live life one day at a time as we always have. I have already started Living on the Edge Radio and will try to make something from it, and money is needed to secure servers and music. I’ve recently put up an Amazon Astore on the site to sell musical instruments, electronics, and MP3 downloads. If you wish to help a poor soul out, go purchase some shit, man!
I think I’ve done enough psychological damage to all my readers, so I have only two more things to say. Happy holidays, and May 2009 be a lot better than 2008 was!
