August Update
While I'd like to say that the last month has been filled with exotic vacations and destinations, that isn't quite the case. However, I still had a pretty "eventful" July.
First of all, Mike got a job! On July 6, he got a call from Careington International asking him to be their in-house graphic designer. Not only is this position in the field he loves, but the company is also located in Frisco, which means no more waiting at the bus station! We'll still be carpooling, but with his work only 6 miles from my school, it'll be easy! He's been working there for about a month, and he loves it. He's even gotten some "kudos" for a commercial that he designed because it's been bringing in a bunch of new clients. I'm so happy that he's happy... and we feel so blessed that he was only out of work for 1 week.
Back in 2006, we made the tough decision to work together so Mike could change careers. He was so unhappy in his previous field of IT, and graphic design is the perfect niche for him. This position with Careington is a great step for his career. He's also applying to Savannah College of Art and Design (SCAD) graduate school to earn his Master's of Arts in Graphic Design. We hope he'll be able to start the e-learning program this fall or spring. When I first got sick, everything else, including Mike's education and career, took a backseat. Now that things have settled down a bit, he's taking steps to advance his career, and I couldn't be more proud of him!
My health is still in a bit of a holding pattern. I was finally released from the hospital on July 17, making my stay a total of 5 weeks. The first week of July, I had to have a second central line put in, and it wouldn't stop bleeding. After losing blood all night, I developed a fever and another bout of cellulitis. My blood pressure was dropping, and my pulse was racing. The doctors were afraid I was becoming septic, so they moved me to ICU for a couple of days. I bounced back and spent the next week being pumped full of more antifungals and antibiotics.
Throughout all of this, my kidney function seemed to improve. After I was released, my doctors all told me how lucky I was for making it through those infections. They all agreed that if I weren't so young and in otherwise good health, that could have been the end of the road. When I was admitted in June, my T-cell (CD4 count) was 0. That means I had absolutely no immunity to anything. By reducing the prednisone and eliminating the cytoxan, I am slowly rebuilding my immune system so I can fight off infections.
While I get angry at my body sometimes, cursing this illness and wondering why this had to happen to me, I've also learned to be grateful. My poor body has been through the wringer, but it's still going. It's lost and gained weight; it's been poked, prodded, biopsied, and bruised, but it's still working. I have to be grateful for that. I was able to come through those terrible infections (and the harsh treatments) with no major side effects.
Now that the prednisone is reduced, I no longer have to take insulin, and my blood sugar is back to normal. My blood pressure is better, so we've reduced that medication, and my blood chemistry seems to be stable. The next step in my treatment plan is the fistula surgery, but my doctor would like to wait until my immune system is stronger. I'm still feeling pretty well, so as long as that's the case, we can avoid dialysis! If I start dialysis, I'd have to go to a center three times a week for about 4-5 hours each time. Eventually, I might be able to do home dialysis, but that would be way down the line. At least I'd be able to get a lot of reading and grading done!
As my hospital stay was winding down, I started getting really nervous. What if I got sick again? What if I couldn't handle working? I was scared to leave, afraid of driving, working, going out in public, etc. When I was 16, I was in a pretty big car accident, and I was petrified to get back behind the wheel. My dad encouraged me to take it one step at a time, facing my fears by driving again. I used the same strategy he used with me back then: I started slowly, driving short trips, and did small, quick errands. Now I feel confident behind the wheel again.
I've also been working on realigning my internal clock. In the hospital, I would nap periodically throughout the day, so these last few weeks I've been working on "staying up and active" during working hours. I'm usually really tired by evening, but it's working!
As any teacher can tell you, the week before school starts is very stressful. We're in meetings all day, every day. What most of us really need, though, is time in our classrooms to get ready for the school year. I knew that I'd be stressed if I waited until the week before school starts, so I've been up to school several days this week. I've run copies, set up my classroom, and planned the first six weeks. Now I feel more confident to start the year!
Today I met with my rheumatologist, who confirmed that he and my other doctors need to watch my health "like a hawk" in the next few months to make sure the Wegener's doesn't flare up again. I really feel like I'm in good hands, and I'm so lucky to have such good doctors working so hard to take care of me.
So here we are... one week left before the "official" first day back for teachers! Now that my ducks are all in a row, I plan to relax and savor these last few days of summer freedom. I've been able to see my dad a few times, as well as spend some time with my brother and mom. I'm so grateful for that time with my family. My "honey-do" list for around the house has gotten a bit long, so I'll be doing a couple of things each day to maintain and build my strength. Overall, I feel my anxiety level decreasing, and I'm enjoying taking some time to feel appreciation for all of the blessings in my life.
First of all, Mike got a job! On July 6, he got a call from Careington International asking him to be their in-house graphic designer. Not only is this position in the field he loves, but the company is also located in Frisco, which means no more waiting at the bus station! We'll still be carpooling, but with his work only 6 miles from my school, it'll be easy! He's been working there for about a month, and he loves it. He's even gotten some "kudos" for a commercial that he designed because it's been bringing in a bunch of new clients. I'm so happy that he's happy... and we feel so blessed that he was only out of work for 1 week.
Back in 2006, we made the tough decision to work together so Mike could change careers. He was so unhappy in his previous field of IT, and graphic design is the perfect niche for him. This position with Careington is a great step for his career. He's also applying to Savannah College of Art and Design (SCAD) graduate school to earn his Master's of Arts in Graphic Design. We hope he'll be able to start the e-learning program this fall or spring. When I first got sick, everything else, including Mike's education and career, took a backseat. Now that things have settled down a bit, he's taking steps to advance his career, and I couldn't be more proud of him!
My health is still in a bit of a holding pattern. I was finally released from the hospital on July 17, making my stay a total of 5 weeks. The first week of July, I had to have a second central line put in, and it wouldn't stop bleeding. After losing blood all night, I developed a fever and another bout of cellulitis. My blood pressure was dropping, and my pulse was racing. The doctors were afraid I was becoming septic, so they moved me to ICU for a couple of days. I bounced back and spent the next week being pumped full of more antifungals and antibiotics.
Throughout all of this, my kidney function seemed to improve. After I was released, my doctors all told me how lucky I was for making it through those infections. They all agreed that if I weren't so young and in otherwise good health, that could have been the end of the road. When I was admitted in June, my T-cell (CD4 count) was 0. That means I had absolutely no immunity to anything. By reducing the prednisone and eliminating the cytoxan, I am slowly rebuilding my immune system so I can fight off infections.
While I get angry at my body sometimes, cursing this illness and wondering why this had to happen to me, I've also learned to be grateful. My poor body has been through the wringer, but it's still going. It's lost and gained weight; it's been poked, prodded, biopsied, and bruised, but it's still working. I have to be grateful for that. I was able to come through those terrible infections (and the harsh treatments) with no major side effects.
Now that the prednisone is reduced, I no longer have to take insulin, and my blood sugar is back to normal. My blood pressure is better, so we've reduced that medication, and my blood chemistry seems to be stable. The next step in my treatment plan is the fistula surgery, but my doctor would like to wait until my immune system is stronger. I'm still feeling pretty well, so as long as that's the case, we can avoid dialysis! If I start dialysis, I'd have to go to a center three times a week for about 4-5 hours each time. Eventually, I might be able to do home dialysis, but that would be way down the line. At least I'd be able to get a lot of reading and grading done!
As my hospital stay was winding down, I started getting really nervous. What if I got sick again? What if I couldn't handle working? I was scared to leave, afraid of driving, working, going out in public, etc. When I was 16, I was in a pretty big car accident, and I was petrified to get back behind the wheel. My dad encouraged me to take it one step at a time, facing my fears by driving again. I used the same strategy he used with me back then: I started slowly, driving short trips, and did small, quick errands. Now I feel confident behind the wheel again.
I've also been working on realigning my internal clock. In the hospital, I would nap periodically throughout the day, so these last few weeks I've been working on "staying up and active" during working hours. I'm usually really tired by evening, but it's working!
As any teacher can tell you, the week before school starts is very stressful. We're in meetings all day, every day. What most of us really need, though, is time in our classrooms to get ready for the school year. I knew that I'd be stressed if I waited until the week before school starts, so I've been up to school several days this week. I've run copies, set up my classroom, and planned the first six weeks. Now I feel more confident to start the year!
Today I met with my rheumatologist, who confirmed that he and my other doctors need to watch my health "like a hawk" in the next few months to make sure the Wegener's doesn't flare up again. I really feel like I'm in good hands, and I'm so lucky to have such good doctors working so hard to take care of me.
So here we are... one week left before the "official" first day back for teachers! Now that my ducks are all in a row, I plan to relax and savor these last few days of summer freedom. I've been able to see my dad a few times, as well as spend some time with my brother and mom. I'm so grateful for that time with my family. My "honey-do" list for around the house has gotten a bit long, so I'll be doing a couple of things each day to maintain and build my strength. Overall, I feel my anxiety level decreasing, and I'm enjoying taking some time to feel appreciation for all of the blessings in my life.
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