Prednisone and I have a love hate relationship. We go back to the beginning of my UC journey. When I was first diagnosed with UC it was mild, and my doctors had me take Canassas, then this foam, and finally Lialda. We discovered I was most likely allergic to the main ingredient since my symptoms only seemed to get worse. Thus began the Prednisone. Just to give a time line. I started the other medication in March of 2009, and around July we started the prednisone. I was only on it for about a month but it really did the trick. Not only did all my UC symptoms disappear, I stayed in remission until July 2011 with out any medication. Here we begin the 7 month battle. I started to flare up in July 2011, but because I couldn't take any of the medications for mild UC, and Insurance wouldn't help with the stronger medication unless I had moderate to severe UC, we had to play the waiting game. 7 months on prednisone made me absolutely hate this medication. My face rounded out, I had massive mood swings, anxiety... Luckily in February of 2012 my flare up became severe, and insurance would cover Remicade. I was able to wean off the Prednisone, my face went back to normal, and my emotional wellbeing recovered. I have had to get back on Prednisone twice since then. Only for a short time. The longest has been 2 months. Even in that 2 months my face has rounded out again, and I have put on 12 extra pounds. Not what you want when you just spent 12 weeks to lose those 12 pounds.
I am at the end of my latest relationship with Prednisone. Yes I gained 12 pounds, and yes I have the "moon" face again, but it did its job and I'm back on my way to remission with a new medication. Fingers crossed I can go another couple of years before needing to meet up with Prednisone again.
Friday, November 3, 2017
Friday, October 20, 2017
Taking Control Intro
It's funny how often we think we have control of our lives. For example, my husband and I are planners. We have always had a plan A and B, and sometimes even a C. We were lucky enough to have our plans work out for us when it came to having children, right down to the day they were born. We planned to be on a single salary while our children were little. We planned our move to our new house, getting a new car, vacations, events... Our budget is tight, but we have still be able to live comfortable. However we haven't been able to plan for everything. We didn't plan our daughter would have to be born by C-section 5 weeks early, or that I wouldn't be able to produce enough breast milk. We didn't plan that I would be diagnosed with Ulcerative Colitis in 2009, starting almost a decade of "what if's".
Being a planner, these "life bumps" have caused lots of anxiety, stress, and break downs (not what you want to have with UC). However being a planner has also helped see past the present and look to the future. I have been able to take back the control. I know that I can't plan for everything, but I can see different out comes and what path to take for each one.
Since 2009 I have had 4 flare ups, and have tried 5 different medications. But I have only met 3 people with UC. To be fair not many people like to introduce themselves with "hello my name is ___ and I have UC that causes me to have flare ups with bloody diarrhea for days, and weeks at a time. Yes there are Facebook groups, chat rooms, and websites to connect you to others, but I only read the worst of the worst. I could feel myself losing control of my UC and letting it consume me. So I did the only thing I could think of. Get off those pages, stop researching UC, and just focus on the information my awesome GI team provided. If a family member or friend sent me an article about UC I just deleted it. I didn't want to know too much. There were too many plans.
Now its 2017. My body has produced too many antibodies against Humira over the past 5 years so on to the next plan. Entyvio here we come. Part of the new plan is also to get a better hold on diet and exercise. I had lost 30 pounds over the last 8 years from flare ups. But the weight has come back (not all of it) and the Prednisone has not helped. One way I have found to hold myself accountable for diet and exercise is to write about it. So here we are. I'm not sure if anyone else will read this blog, but if they do Hello, I'm going to try to post at least once a week on the good, bad and ugly of my taking control of my UC. I also have another blog called Happy Hour, where I talk about being a stay at home mom, and starting to move back into the professional world. This is how I am Taking Control.
Cheers
Being a planner, these "life bumps" have caused lots of anxiety, stress, and break downs (not what you want to have with UC). However being a planner has also helped see past the present and look to the future. I have been able to take back the control. I know that I can't plan for everything, but I can see different out comes and what path to take for each one.
Since 2009 I have had 4 flare ups, and have tried 5 different medications. But I have only met 3 people with UC. To be fair not many people like to introduce themselves with "hello my name is ___ and I have UC that causes me to have flare ups with bloody diarrhea for days, and weeks at a time. Yes there are Facebook groups, chat rooms, and websites to connect you to others, but I only read the worst of the worst. I could feel myself losing control of my UC and letting it consume me. So I did the only thing I could think of. Get off those pages, stop researching UC, and just focus on the information my awesome GI team provided. If a family member or friend sent me an article about UC I just deleted it. I didn't want to know too much. There were too many plans.
Now its 2017. My body has produced too many antibodies against Humira over the past 5 years so on to the next plan. Entyvio here we come. Part of the new plan is also to get a better hold on diet and exercise. I had lost 30 pounds over the last 8 years from flare ups. But the weight has come back (not all of it) and the Prednisone has not helped. One way I have found to hold myself accountable for diet and exercise is to write about it. So here we are. I'm not sure if anyone else will read this blog, but if they do Hello, I'm going to try to post at least once a week on the good, bad and ugly of my taking control of my UC. I also have another blog called Happy Hour, where I talk about being a stay at home mom, and starting to move back into the professional world. This is how I am Taking Control.
Cheers
Subscribe to:
Posts (Atom)