|Posted on October 28, 2011 at 6:15 AM|
Hello everyone! Sorry for the delay in updating the blog, but a lot has happened in the past few months since my most recent trip to Monterrey. When I returned from my surgery and big boosters, I was feeling the best I have ever felt since having RSD, and I had just had surgery for crying out loud! This was truly a miracle we could have only dreamed of! I owe it all to Dr. Cantu and my wonderful medical team at San Jose, and of course my family and friends for making another trip of healing possible for me.
During this time of feeling on top of the world, the Jarvis family welcomed in a Golden Retriever puppy named Boomer who was a special gift from my Nana and Pop-Pop. Since our other golden, Moe, died in 2007, we have wanted to get another dog but knew we had to wait until all of my Mexico trips were over. Little Boomer makes me smile every single day, and I feel so lucky to have him! I know the rest of the family, including our chocolate lab, Hershey, feels the same!
Another dream I was able to realize was going to a Taylor Swift concert. When I was in Mexico the first time, the only thing I wanted to listen to was Taylor Swift music during those rough couple of weeks after my coma, so when the tickets went on sale earlier in the year, my mom bought us handicap accessible seats to put away for my birthday. Months ago, it was only a far off dream that I would be well enough to attend, but we knew this surgery was coming up and came along with the big boosters. As many of you know, RSD can cause extreme sensitivity to vibrations that translate in a patient's body as pain signals. Concerts are made up of many many of those vibrations, so this goes to show you how well I was doing when I was able to actually go! I packaged myself up in my wheelchair with pillows, put in my earplugs, took some of my break through pain medication, and was the happiest girl in the world. I was so happy that I was fortunate enough to experience this special moment with my mom at this amazing concert that I couldn’t have imagined myself being able to go to in a million years that I started to cry. If you know my mom, you know she started to cry too! She cried during "TheDevil Wears Prada" so of course she was crying! I was so lucky to have these incredible 2 weeks where I was feeling so good, and I would like to take a moment to say thank you to all of you who made it possible!
As you probably noticed, I said 2 weeks, so the story is about to change. Don't worry, because it's not all bad. As part of the protocol for having surgery with ketamine, you have to go for boosters more frequently afterward to keep you feeling good. When I went for my first round of boosters in Philly, the nurses had some difficulties getting my vein. I really only have one good vein to get anymore, and it seems for now, it's seen better days. It took 5 tries to get a vein, and with RSD, that is not good. My whole body went into spasms, and to an outsider it looked like I was having a seizure. This is the way my RSD reacts when it's trying to say "Okay! Enough already! I've had enough and I'm done!". After a little while, my body calmed down, and I was able to receive the treatments for the 2 days. Unfortunately, even after having the 2 days of treatments I was not only worse off than before I walked in the door, but I was feeling the worst I had felt since my coma.
Different treatment options have been discussed. One option is to simply try again and go for a booster, but the bruising hasn't completely healed from the last time, and it's been 2 months. I don't think my veins and the rest of my body are ready to try again right now. Another option is to have a port put in, but after taking so much care to ensure the last surgery would go well, why would I want to rush into this surgery? I have decided to go with another option. I have added a wonderful pain management doctor named Dr. Lin to my medical team. I am trying a couple different medications to see if we can get the pain levels under control enough to return to heated pool therapy. Right now, I feel that I am still too sensitive and the water could do more harm than good. It's taken a couple of weeks, but I feel that I am headed in the right direction with the medications. With some more time and a few more adjustments with the medications, I hope to get back to pool therapy very soon.
A few changes have been happening at the Jarvis household. Since we moved here, I have always had the bigger room, and Erin has had the small room. Our plan was to switch rooms when I went off to grad school in a few months. With the turn of recent events and a slight change of heart, I decided I didn't want to go away to school anymore because I'm not sure I could physically handle it again. Just because I changed my mind about that, didn't mean it would be fair not to give my little sis a change with the bigger bedroom. After talking it over with the family, we decided it would probably be best if we were going to be playing musical rooms to give me a room on the first floor so I didn't ever have to worry about not being able to make it up the stairs. My family was generous enough to give up the family room for me, which has been my temporary room on and off over the past years. I now have a beautiful new bedroom that is easily accessible and where I can feel more independent. Let me tell you, this has completely changed my life for the better, and I can't thank them enough! Next on the list of renovations is Erin's new room. When that's all done, Erin's old room will become the new office/ Jeff's room / guest room. Wish us luck!
I also have a few announcements to make. This past summer I was fortunate enough to graduate from Stockton College with my Bachelors degree in Psychology and a minor in Holistic Health. My plan was to move onto grad school in the spring to get my Masters in Library Science. This most recent flare up has given me a bit of time to think about my future. I know I want to work in a library again, but I'm not sure if it makes sense to take out all the loans for grad school if there is a chance by the time I'm done I may not be well enough to work. After much research, I have decided to apply to Northampton Community College to get my Library Technical Assistant certification. This will involve 5 (but I wantto take all 6!) online courses that will only take 2 semesters. This will allow me to live at home, spend time with my family, and take the time I need to continue to get better.
My other exciting announcement is that four years ago I was an extra in a movie called "The Mighty Macs". Over the years I have been very lucky that incredible opportunities have come to me during times when I was feeling good. One day my good friend Alexis called me up to say she was going to be an extra in this movie and would I like to join her. Of courseI said yes! It took a long for the movie to make it to theaters, but now we are on the big screen! Our families went to see the movie the other night, and we had so much fun finding ourselves in the background!
Thank you again everyone for all your support over the years! You have made some miracles happen! Please pray for all people affected by invisible illnesses such as RSD, including their families. Please pray that one day there will be a cure. And please pray for all the doctors and their teams who dedicate their lives to helping those of us with RSD like Dr. Cantu, Dr. Luis, Dr. Schwartzman, and Dr. Lin because we would be lost without them!