Since returning from the Cleveland Clinic Pain Rehabilitation Program things have been going pretty well. I have had to make the drive back out to Cleveland a couple different times for some testing a G.I doctor up there wanted to do. Some of the tests were Hydrogen Breath Tests, Upper G.I & Bowel Series. I have an appointment in several weeks to go over the test results of the Bowel Series and decide what to do for me next, based on how I'm feeling. The Breath Tests results came back right away. I did the two major intolerances, which are lactose and fructose. My body was okay with lactose but responded highly to fructose. I went on a complete fructose-free diet for two weeks to see if this would make a difference at all. At first, I thought I noticed a difference, but still continued to have the same symptoms and pain as always. I was a little disappointed when being off fructose and still having the same issues. I had a little hope that maybe eating something my body was intolerant to was part of the cause. Unfortunately, I didn't notice a difference.
One of the many appointments I had after being gone for 3 weeks was my Pulmonary appointment, which I was really looking forward to see how much things were improving! I knew (or at least hoped) things improved somewhat after not having a flare-up for 9 weeks now! Every Pulmonary appointment I get at least 2 tests done, PFT and FeNo, Pulmonary Function Test and Nitrous Oxide. PFT measures the amount of airflow and FeNO measure the amount of inflammation inside the lungs. The Pulmonary Function Test "normal range" is based off your FEV1 number which is different for everybody. I've been as high as 100% in the past and as low as around 40% airflow in my lungs. For the Nitrous Oxide test, under 20 is considered normal range and 35 or higher is considered high inflammation. I have been as high as 94 for this test and the lowest I've ever been has been 33. My test results as of this appointment turned out to be very well.I was very excited with my numbers and even more happy that my symptoms and flare-ups have decreased, at least for now.
My PFT/FEV1 number may have gone down a few percentages from before, but I am still very happy with these numbers because that is around one of the highest I get for the PFTs and the inflammation in my lungs has gone down from 65 to 33 which is my lowest number ever!
Of course I have had many many flare-ups, higher-dose steroid bursts, and emergency visits since my last appointment but I have managed to control my lungs at home for the most part. I have been doing a lot better than the way I was for years!
Of course these numbers can very easily change within the matter of minutes, but my point is, I was not on a steroid-burst at the time of these tests and had been on one of my longest streaks, doing well, lung-wise!
On a more personal side of things, a lot more has been going on than usual. My life, not including health complications, usually is very calm and not much happens (considering health issues are my entire life). But a couple weeks ago, I was on my way home from the hospital after a long day with immunotherapies and appointments when I stopped at a red light. Less than 10 seconds after stopping at the light I felt another car slam into the back of my car... of course, first thing first, I was okay, had some pain but couldn't be worse than what I was already used to. It took me off guard and I was a little shocked at what had just happened. Thankfully, there was a fire truck at the intersection the same time this happened, so they were able to block the road and let us carefully move off to the side and called the police. After the situation was resolved and my mom came to drive me the home the rest of the way, I was thankful that I wasn't seriously hurt and neither was the other woman involved, but I couldn't help but be really angry. I was already having a particularly rough day with pain and other issues and now I had to deal with the even more intensified pain from the car accident and to make matters worse, had to drive 2 1/2 hours away to Cleveland right after this happened! After a couple days, things returned back to normal (besides the back of the car) and once again, things calmed back down.
However...
This past week I also had another full day at the hospital with many appointments, testing, and infusions. When I arrived back home I felt very sick and and felt as if I really needed to just lay down. I left my stuff in the car, assuming I would come back out and get it later, while I went to go lay down for a little bit. But, I wasn't getting any relief and was trying to get my symptoms under control when I just decided to call it a day. The next day, I woke up feeling better than I was the evening before. I relaxed around the house, until I needed my purse, and that's when my mom went out to the car to get it for me since it was left in the car from the hospital. That's when she noticed. The passenger side of the car, where I had previously left my purse, had been broken into. As soon as we found out, I immediately called my bank, as my debit card and wallet had been inside my purse. Sadly my debit card was used before I could cancel it. My drivers license, some medications, medical equipment cards, and other personal things (such as my Beads of Courage) was also taken.
The next day, a neighbor knocked on the door with a bag of some, but not all, of the stuff that had been inside my purse before! I was very excited in hopes that some of my stuff would be returned, especially my beads. Medical cards, drivers license, and medications were returned, but sadly, my beads were not. These beads are not worth of value, more as they are just something very personal and dear to my heart.
* Beads of Courage are beads that are given to children and teens that fight life-threatning/chronic illnesses. Each bead represents different medical interventions I have been through, such as, days in the hospital, ICU stays, IV pokes/port accessing, scans, infusions, specialist appointments, surgeries, procedures, etc.. These beads are very dear to me as they are the one thing that get me through the hard times. Being able to look at all the beads I have and see just how much I have overcome to get to where I am now. It is an amazing program.
You can learn more about it here - http://www.beadsofcourage.org/index.html *
"You are more than your circumstances."
One of the many appointments I had after being gone for 3 weeks was my Pulmonary appointment, which I was really looking forward to see how much things were improving! I knew (or at least hoped) things improved somewhat after not having a flare-up for 9 weeks now! Every Pulmonary appointment I get at least 2 tests done, PFT and FeNo, Pulmonary Function Test and Nitrous Oxide. PFT measures the amount of airflow and FeNO measure the amount of inflammation inside the lungs. The Pulmonary Function Test "normal range" is based off your FEV1 number which is different for everybody. I've been as high as 100% in the past and as low as around 40% airflow in my lungs. For the Nitrous Oxide test, under 20 is considered normal range and 35 or higher is considered high inflammation. I have been as high as 94 for this test and the lowest I've ever been has been 33. My test results as of this appointment turned out to be very well.I was very excited with my numbers and even more happy that my symptoms and flare-ups have decreased, at least for now.
My PFT/FEV1 number may have gone down a few percentages from before, but I am still very happy with these numbers because that is around one of the highest I get for the PFTs and the inflammation in my lungs has gone down from 65 to 33 which is my lowest number ever!
Of course I have had many many flare-ups, higher-dose steroid bursts, and emergency visits since my last appointment but I have managed to control my lungs at home for the most part. I have been doing a lot better than the way I was for years!
Of course these numbers can very easily change within the matter of minutes, but my point is, I was not on a steroid-burst at the time of these tests and had been on one of my longest streaks, doing well, lung-wise!
On a more personal side of things, a lot more has been going on than usual. My life, not including health complications, usually is very calm and not much happens (considering health issues are my entire life). But a couple weeks ago, I was on my way home from the hospital after a long day with immunotherapies and appointments when I stopped at a red light. Less than 10 seconds after stopping at the light I felt another car slam into the back of my car... of course, first thing first, I was okay, had some pain but couldn't be worse than what I was already used to. It took me off guard and I was a little shocked at what had just happened. Thankfully, there was a fire truck at the intersection the same time this happened, so they were able to block the road and let us carefully move off to the side and called the police. After the situation was resolved and my mom came to drive me the home the rest of the way, I was thankful that I wasn't seriously hurt and neither was the other woman involved, but I couldn't help but be really angry. I was already having a particularly rough day with pain and other issues and now I had to deal with the even more intensified pain from the car accident and to make matters worse, had to drive 2 1/2 hours away to Cleveland right after this happened! After a couple days, things returned back to normal (besides the back of the car) and once again, things calmed back down.
However...
This past week I also had another full day at the hospital with many appointments, testing, and infusions. When I arrived back home I felt very sick and and felt as if I really needed to just lay down. I left my stuff in the car, assuming I would come back out and get it later, while I went to go lay down for a little bit. But, I wasn't getting any relief and was trying to get my symptoms under control when I just decided to call it a day. The next day, I woke up feeling better than I was the evening before. I relaxed around the house, until I needed my purse, and that's when my mom went out to the car to get it for me since it was left in the car from the hospital. That's when she noticed. The passenger side of the car, where I had previously left my purse, had been broken into. As soon as we found out, I immediately called my bank, as my debit card and wallet had been inside my purse. Sadly my debit card was used before I could cancel it. My drivers license, some medications, medical equipment cards, and other personal things (such as my Beads of Courage) was also taken.
The next day, a neighbor knocked on the door with a bag of some, but not all, of the stuff that had been inside my purse before! I was very excited in hopes that some of my stuff would be returned, especially my beads. Medical cards, drivers license, and medications were returned, but sadly, my beads were not. These beads are not worth of value, more as they are just something very personal and dear to my heart.
* Beads of Courage are beads that are given to children and teens that fight life-threatning/chronic illnesses. Each bead represents different medical interventions I have been through, such as, days in the hospital, ICU stays, IV pokes/port accessing, scans, infusions, specialist appointments, surgeries, procedures, etc.. These beads are very dear to me as they are the one thing that get me through the hard times. Being able to look at all the beads I have and see just how much I have overcome to get to where I am now. It is an amazing program.
You can learn more about it here - http://www.beadsofcourage.org/index.html *
"You are more than your circumstances."