It’s been a couple days but I am back with my update from the doctor. All in all the appointment went better then I thought it would. I was afraid that with how bad my shortness of breath has been he would put me on oxygen but my O2 stats show that even being short of breath my lungs are compensating so my oxygen saturation is hanging around 95%, which is low for me but not close to any red flags.
My PFT’s however are down even more. Let me just say when I am standing in the little PFT room and I do the breathing thing and the guy goes “awesome, you did great!” apparently he means I put in a good effort, not that my PFT was actually good. I was very disappointed when the Doctor told me that my PFT’s are now down to 31%. The low PFT score wouldn’t bother be as much except for the fact my PFT’s haven’t increased in over 6 months. They have been going down when I am sick, and then just leveling off not increasing when I get better. Hopefully this time it will be different I can at least get back into the mid to high 30’s by mid June.
The medications I am on are Colisten and Cefepime, unfortunately for me I am already having side effects. The common side effects i’ve had previously were tingling and numbness in the mouth and teeth, but it is currently being extra tingly and numb. I am also encountering a constant bad taste in my mouth, which isn’t that bad just kind of annoying. The best side effect for the first time in nearly 3 years I can smell! By that i mean I can smell EVERYTHING. I lost my sense of smell a few years back after tackling a series of severe sinus infections. It is really strange to me to be able to smell things now, I hope this will be a permanent side effect, i like to smell things.
The worst side effect I am starting to experience is my joints locking up. When I was on IV meds in Feburary I had the same issue, it got so severe the Doctor switched my medications. Right now it’s only in my right knee and ankle, but the last time it went from both hips down and in my wrists and elbows. I can play through the pain so far, but the last time I wasn’t able to walk for about 3 days and I am really scared that it will happen again, I don’t want any permanent damage. I also don’t want to switch the medications though either, I am resistant to a lot of the medications that are normally used to treat my strand os Pseudomonas, so it would be nice to stay on the medications that are both sensitive.
I will be on the IV Antibiotics for the next 3-4 weeks, and if worse comes to worse I will restart all my training after that. I am confident that I still have enough time to make my 10 Miler in October and to reach my 13 Minute Mile pace. I’ll just have to work extra hard after this dose of medications.
I’m sure it will all work out for the better, but wish me luck!
I know it’s been a while, but I return baring gifts and by gifts I mean pictures! I spent last at one of my favorite places in the world, Disney World! We returned last Thursday afternoon, but I was beyond busy because I had to take my grandfather to the doctor the next day and we went over to Silver Lake (MI) for the Memorial Weekend. I packed all the essentials to go up north my laptop, charger, berthing machine, cell phone and then we arrive at our camp ground to find the wifi is nearly useless. I mean you can’t open google useless. I unfortunately have also been experiencing some complications with my breathing as well. It was quite the weekend.
It was around thursday or Friday night when I realized that I not only wasn’t breathing properly I felt like I couldn’t breathe at all. I had anticipated that it was from exhaustion of playing at Disney and that it would go away, but I have seen no increase in my ability to breathe. It’s terribly frustrating for me to admit when I am having a hard time. I am very much the person who puts on the brave face and pushes through the pain or complains about something much milder to give this illusion of better health. I admitted defeat to myself this morning and e-mailed my doctor with all of my symptoms and issues. I had an appointment scheduled for next week, but given the type of problems I am having he has asked me to come in tomorrow morning.
This is just a preliminary update, no fuss or anything to worry about. I am confident that I will overcome this hiccup in my plans, and that I will keep moving forward.
I did not want to include my beautiful disney magic, or the rather quirky story from my memorial weekend in what I feel is a somber post, so you will be seeing all that soon.
Wish me luck?
This weekend my family took off and went over to Mears MI over by Lake Michigan. I fully intended to bring my Garmin and my sneakers, but as I walked out of the house with my backpack I did not. It happens right? We all forget things! It ended up being pretty chilly, but I did do a little bit of walking nothing worth really writing about. On another note we had a great time playing in the Silver Lake sand dunes! My family got a new sand toy over the winter and this was our first weekend taking it out.
We left went up Friday afternoon and came back earlier today (sunday). It was an exhausting, long weekend. Tonight I went for my first real walk in a few days and it didn’t quite get everything out of it that I wanted, but I did set my first real Personal Record!
I really set out on my walk this evening with the goal of running more. My goal at the start was to go 3k, but I made it about 1k and I almost turned around and went home because I really wasn’t feeling well, but I pressed on anyway. I was striving to get my Kilometer time under 10 minutes, and I did a few short runs for about 30 seconds each, but I really pushed myself to hard. It took me longer to recover then the running was worth on my overall time. I did eventually discovered that I can handle a 5 second run with a 30 second walk. It’s not much, but it is a start! I was excited when I plugged in my Garmin and the results came up that my mile time was down to 19 minute mile. It is important to get my mile down to at least 15 minutes because that is the time limit for both of the runs I am participating in this year. I know those last four minutes aren’t going to come off easily, but with some time and hard work I can do it!
Wish me luck!
I keep selling myself short and saying I only walked, but even walking a 5k is a big accomplishment for me. I have never just walked before, I’m sure I have walked three miles in the time I worked at Disney, but this is different. I will say I had to walk the same corners of my road two to three times before I reached the 5k mark, but I don’t even mind!
The next part of my goal is to get my 5k under an hour, and I’m only 15 minutes over. I have no doubt that it will take effort to lose that 15 minutes, but I know that just completing the 5k distance was a great start!
In the past two days I have tried to start jogging in my walks. Today it didn’t go so well for me. I have been trying to use the Galloway method which is a run walk method. I told myself I was going to job for 10 seconds, well I got a little ahead of myself and 10 turned into 30. I won’t be making that mistake again. I definitely have to start slow, but I never stopped! After all you have to keep moving forward right? Well I will keep moving.
On my run I also came across an interesting image that I had to share on my instagram, so I will share it here as well. This is the anti-hipster photo.
The limit of Pizza
Wish me luck!
The past couple days have had there ups and downs, and I am happy to report that I have been walking! I went for a walk this past Wednesday and my Nike+ sensor just quit working on me so I made a split moment decision to buy a Garmin 110. I ordered mine through Amazon it was roughly $130.00 but I was super excited to make the investment in my running future. I received it saturday morning and of course I had to charge it and use it right away! Well after using it tonight on my longest walk yet I am pretty heart broken to report that it quit working, to say that i am disappointed is an understatement i think terms like pissed off are more accurate. I asked around for a bit before I made my purchase and everyone seemed really happy with Garmins and told me that they are really the only way to go for serious running, so I am hoping that this can get sorted as quickly and painlessly as possible.
What am I most upset about? That all that data from my walk tonight is lost. No I did not reach my 5k goal, but I did go on my longest walk and now it is just non-existent. In all I can’t if I am more upset that this Garmin let me down, or that I feel i’ve let you down. I’m not really upset for not meeting my 5k goal, tonight I walked (with my dad) 2.15K and I was exhausted. I completely underestimated how long 5k is, so I am rescheduling that 5k goal for this coming sunday. Now that I have abetter idea of what kind of a distance I have ahead of me, I think I can accurately tackle my goal!
My bigger goal for tomorrow is to figure out what is wrong with this Garmin! Hopefully to get it on the track to working again. I don’t by myself nice things very often, I have been trying to make a change in that. It’s hard to change when you spend a lot of money on yourself and it just falls apart in front of you. I am confident it will get fixed though!
Wish me luck!
As I am sitting at the edge of my bed reading over some run disney blogs a thought occurred to me. Accomplishing this Marathon in a year goal would change my life. When I left Disney and ended my college program early because I was sick I was pretty much devastated. That was the one moment in my life where I let my CF rip me away from an experience I had dreamed of for years. I will always look back at that moment and think there must have been more I could do to stay. I realize that was the moment my health just got away from me. I let Disney become the most important thing to me, and I left later then I should have because I was very sick by the time I made it back and into the doctors office. I go to the University of Michigan in Ann Arbor and my doctor is Richard Simon and he is so wonderful. I didn’t realize at the time what I had done to myself but looking back now I can see that if I had come back from Florida a week or two sooner my health today would probably be 100 times better.
I made my return from the land of Magic and my Pulmonary Function Test (PFT’s) were low, I mean mid 30’s which is down from my usual high 40’s and low 50’s. The doctor put my on IV antibiotics and I went home and took time off from working, school and I just relaxed. A week and a half went by and I saw no improvements so the doctor decided to switch some of the meds around and keep trying. I continued my IV antibiotics at home for another three weeks. I finally started feeling better, my attitude was more positive and I just had more energy I thought I was back to my baseline. I went back in for a check up and my PFT’s had done gone about 5%, which to me was horrible. I was mortified that there wasn’t more improvement, i always bounced right back after IV’s I just didn’t understand why i felt better but they were still so low. The doctor was happy that I felt well concerned about the PFT’s but decided that continuing IV’s at that point wouldn’t help the PFT’s improve, and the physical and emotional stress of IV’s would just have a reserve effect on me in the end.
I did pretty well for a couple weeks, but it wasn’t even a month before I was back down and sick again. I e-mailed my doctor and he wrote me a prescription for Cipro which is a standard CF Pneumonia pill, and I kept going. It was February when I was put back on IV Antibiotics, which is a fairly normal schedule for me every three months. The problem was I didn’t have any time to feel better. The IV’s came and went three weeks later and I didn’t see any improvement. My PFT’s were in the low 30’s and my energy level was shot. Unfortunately I haven’t felt any kind of recovery since then.
I’ve been losing weight which a tragic sign of sickness in the CF community and that combined with my energy levels scares me to death. I have been sick many times in the past, but I’ve never truly felt sick. I have my days of complaining and hating life just like everyone else, but i’ve never been scared of my CF before. I believed for the longest time that I didn’t have a can do attitude, i had a will do attitude and that it pushed through the obstacle that stood before me sick or not. I let my CF get the better of me and it is taking a lot of work to get that attitude back, and this goal is going to be a big part of that. I was so used to coasting ahead and now I am battling just to keep my place in line, I am determined to win. I am determined to be better.
Tomorrow is a big day for those of us in the Cystic Fibrosis community because it marks the beginning of Cystic Fibrosis Awareness month! This year I am making a special dedication of all my running and walking and training efforts, I am going to raise money for the Rock Cf Foundation
I am really excited to put all of my efforts to a good use beyond just my own personal health! The Rock CF Foundation was founded by Emily Schaller, who I was fortunate enough to know growing up because we both went to the Children’s Hospital of Michigan in Detroit. Emily has made strides to help those who have Cystic Fibrosis, and to help find a cure and she is one of my biggest hero’s and inspirations! She done some things that people would say is impossible for someone with Cystic Fibrosis and I keep a hold of her ambition and spirit as I move forward in my goal of running 26.1 miles this year. My marathon in a year goal is something that I used to think was impossible and I still have my days where it feels like years away instead of months, but keeping the right inspiration has been key to my moving forward. I can think of no better way to repay her for what she’s done for me then to support her charity and her goals.
My goal is to raise $100.00 for each mile of my marathon journey, which is a grand total of $2,600.00. I have created a crowd rise page to show my fundraising progress:
Between now and November 16th the day of the Half Marathon I will accepting donations on behalf of the Rock CF Foundation to help complete the second part of my Marathon in a Year goal. All donations big and small around appreciated! I wish I could show my appreciation and send you all a big hug! I know that there are going to be some hard days between now and November. I haven’t gone longer then three months without IV antibiotics in a long time, but I know that together we can get through this and by the end of the year I will have done something that I thought was impossible a year ago.
Wish me luck!