In honor of world IBD day I thought I'd come back to my blog. It's been awhile since I visited and lots have happened. In either case, I have adapted to life as a different normal from what most experience.
Normal now consists of 6-12 bathroom trips a day. I wish it was only to pee, but alas it is number 2 that drives me to the bathroom. What a normal person would find incomprehensible I find good. This is better than the 20-30+ times a day I went in the past. I still experience urgency, but it is not a every moment kind of thing. Fortunately, now the accidents at night have stopped. Imagine how embarrassing it is to have an accident in the middle of the night when you are married. I'm still not far enough removed from this as I still were pads to bed every night. Yup, that's right, a pad. And don't forget the pantie liners every day for the leakage.
While I may look happy, go lucky, pain is still a normal thing for me. I have severe pain about twice a week. As most recently as last week, I had to cancel appointments due to extreme abdominal pain. This isn't your normal stomach ache. This is doubled over, no relief, pain. Fortunately, this does not come often. Usually it is just a stabbing pain that I work through. Most days consist of some sort of nausea followed by bathroom trips, followed by stomach pain followed by a few bathroom trips. But yet, this is better than it was before.
I recently bought a Jawbone. I bought it for two reasons. One to keep track of my calories in/calories out. Another to track my sleep patterns. While most who track their calories and exercise are trying to lose weight, I am just trying to maintain. I have to make sure that my calories in not only match my calories out, but exceed them. Otherwise I lose much needed weight. I also track my deep sleep per night. In the short time I've had my Jawbone, I average 2 hours of deep sleep a night. Can you imagine working a full day followed by and evening with family and a workout on 2 hours a sleep per night? Yet, this is normal for me.
Another problem I face is being thin, but not sick thin. I am at a normal BMI which many still find "thin". While many do not see me as sick, I a still technically am. While, many think of me as skinny, I am not a picky eater. I wish people wouldn't judge thin as "lucky". I wish I could eat whatever I want, whenever I want. If I do, I pay a price (which I often do). What I am eating and when I am eating is still consistently on my mind. I need to plan things. Spur of the moment isn't always on option.
Life consists of a multiple of prescription and of the counter medications even though I feel "better". I am on Cipro for pouchitis and abscesses, and Tramadol for arthritis. I take Pepto Bismal and GasX every night before bed to help control accidents. There are other medications, but these are the ones I take every day no matter what. This is what I do to stay healthy. Otherwise it's back to square one, the hospital.
While this may all seem to be bad, it is light years beyond where I was 4 years ago. I am able to work full time. I help instruct Tae Kwon Do. I volunteer at a no-kill cat shelter. I spend time with my husband. And I enjoy my hobbies of going to concerts and spending time outdoors. All things I couldn't image doing 4 years ago. Four years ago I was existing; that's it. Today I am living. The reality is life with IBD is not easy, but it is still life.
Sunday, May 18, 2014
Friday, November 30, 2012
A Recap On NHBPM
I took the challenge of National Health Blog Post Month's 30 Days, 30 Posts. I have to say it was an enjoyable experience for me and I hope to those who have read my blogs this past month. I blogged every day in November to complete all 30 days. Though it was a challenge to complete some of the blogs on time with my hectic schedule and the Thanksgiving holiday, I completed it. I also learned a little. Here is what the last month has brought me.
1. My biggest day ever. One day this month I had the most hits on my blog that I have ever had in the past 11 months. This means that my word is getting out and hopefully I am helping some who are living or know someone living with IBD or a j-pouch. In the very least I hope I have brought enjoyment to those who have read the posts.
2. My most read posts this month were in no particular order: Time To Clean Out The Fridge, The Real Anorexic, To My Well Being, Discussions With A Colo-Rectal Surgeon, and to my surprise Pouch Packages. The post about What Is In My Purse also got a lot of views. It turns about people are pretty nosy and like to see inside other people's world. I have to admit I was quite shocked that Pouch Packages had so many views. I am not sure why, but I would like to think that it is because so many people care and would like to send some pouch packages to their j-pouch loved ones.
3. It's interesting to see how people have found my blog. Most of my sources are from facebook or my favorite support site, j-pouch.org, but others have found it through searches. Most of the searches are about IBD or anorexia. I have found the two most intriguing to be "pooping my pants" and "green poop". I would like to think I am helping the people searching for these, but I have a feeling some are just looks for some giggles.
4. I have also learned a lot about myself. Opening up about yourself every day for a month is bound to reveal a little something you didn't see before. I always knew music meant a lot for me, but I felt it coming up a lot more than planned in my posts. I also realized how much put a positive spin on life. I feel this has helped my recovery and who I am today in so many ways that even I cannot realize. I also realized that I may have something enjoyable for others to read about. I started this blog mostly for myself, so that I could get out of my head a little more. Within this past month I have noticed that I have reached a steady, though small, following. Maybe what I say resonates with others or hopefully it is helping someone going through the same things I have.
5. I have found joy in blogging this past month. I decided to do this challenge because many times I feel it hard to open up or cannot come up with ideas to post about myself. This challenge has forced me to open up a little more because it is hard to blog without getting a little personal and when I set a goal for myself I am determined to complete it.
There are many more ideas that I did not get to during the 30 days as each day gave two ideas to choose from. I hope to continue this zest for blogging by posting about a few other ideas on the list and a few of my own I have come up with in these past 30 days. I hope everyone who has followed me through the 30 Days, 30 Posts has enjoyed my posts as much as me and continues to follow my posts in the future. Thank you!
1. My biggest day ever. One day this month I had the most hits on my blog that I have ever had in the past 11 months. This means that my word is getting out and hopefully I am helping some who are living or know someone living with IBD or a j-pouch. In the very least I hope I have brought enjoyment to those who have read the posts.
2. My most read posts this month were in no particular order: Time To Clean Out The Fridge, The Real Anorexic, To My Well Being, Discussions With A Colo-Rectal Surgeon, and to my surprise Pouch Packages. The post about What Is In My Purse also got a lot of views. It turns about people are pretty nosy and like to see inside other people's world. I have to admit I was quite shocked that Pouch Packages had so many views. I am not sure why, but I would like to think that it is because so many people care and would like to send some pouch packages to their j-pouch loved ones.
3. It's interesting to see how people have found my blog. Most of my sources are from facebook or my favorite support site, j-pouch.org, but others have found it through searches. Most of the searches are about IBD or anorexia. I have found the two most intriguing to be "pooping my pants" and "green poop". I would like to think I am helping the people searching for these, but I have a feeling some are just looks for some giggles.
4. I have also learned a lot about myself. Opening up about yourself every day for a month is bound to reveal a little something you didn't see before. I always knew music meant a lot for me, but I felt it coming up a lot more than planned in my posts. I also realized how much put a positive spin on life. I feel this has helped my recovery and who I am today in so many ways that even I cannot realize. I also realized that I may have something enjoyable for others to read about. I started this blog mostly for myself, so that I could get out of my head a little more. Within this past month I have noticed that I have reached a steady, though small, following. Maybe what I say resonates with others or hopefully it is helping someone going through the same things I have.
5. I have found joy in blogging this past month. I decided to do this challenge because many times I feel it hard to open up or cannot come up with ideas to post about myself. This challenge has forced me to open up a little more because it is hard to blog without getting a little personal and when I set a goal for myself I am determined to complete it.
There are many more ideas that I did not get to during the 30 days as each day gave two ideas to choose from. I hope to continue this zest for blogging by posting about a few other ideas on the list and a few of my own I have come up with in these past 30 days. I hope everyone who has followed me through the 30 Days, 30 Posts has enjoyed my posts as much as me and continues to follow my posts in the future. Thank you!
Thursday, November 29, 2012
Looking Towards 2013 And Beyond
The new year is still a little more than a month away, but I'm beginning to think of the possibilities that it can bring now. It is still exciting to me to have my health back. I am able to make plans and goals. I can truly look forward to what the future holds. Since I can't limit to myself to just one thing I want to accomplish, I will tell you about a few.
1. Continue towards my 2nd Degree black belt. It takes approximately 2-3 years to earn the second Dan as called in Tae Kwon Do. I have only been back to the sport for 4 months now and have already passed my first level test. I hope to be up to at least level 4 out of 6 by the end of 2013. This will put me on track to test for my second degree in early-mid 2014.
2. Reduce medications and doctor visits. This has been a continued goal for me since I had the surgeries two years ago. While my doctor visits and medications have gone down in that time, there is still improvement that can be done. I would like to be able to no longer see my therapist. Though I think he's great, I hope I will be able to navigate through the weeks without his help. I also would like to be able to discontinue the use of the antibiotic. I absolutely hate the fact that I am dependent on antibiotics to continue to have a good quality of life. I am under the belief that overuse of antibiotics is bad for our environment and absolutely hate the fact that I may be somehow contributing to this.
3. Take an Alaskan cruise. This has been a dream vacation of mine since I was wanting to plan my honey moon that never was. Unfortunately my health has kept me from seeing it come to fruition. Whether it was from being too sick to go or having too many medical bills to pay for the vacation. The trip will not happen in 2013 as my finances are not there to pay for the cruise, but with continued health and commissions it may be a possibility in 2014. Maybe?!
1. Continue towards my 2nd Degree black belt. It takes approximately 2-3 years to earn the second Dan as called in Tae Kwon Do. I have only been back to the sport for 4 months now and have already passed my first level test. I hope to be up to at least level 4 out of 6 by the end of 2013. This will put me on track to test for my second degree in early-mid 2014.
2. Reduce medications and doctor visits. This has been a continued goal for me since I had the surgeries two years ago. While my doctor visits and medications have gone down in that time, there is still improvement that can be done. I would like to be able to no longer see my therapist. Though I think he's great, I hope I will be able to navigate through the weeks without his help. I also would like to be able to discontinue the use of the antibiotic. I absolutely hate the fact that I am dependent on antibiotics to continue to have a good quality of life. I am under the belief that overuse of antibiotics is bad for our environment and absolutely hate the fact that I may be somehow contributing to this.
3. Take an Alaskan cruise. This has been a dream vacation of mine since I was wanting to plan my honey moon that never was. Unfortunately my health has kept me from seeing it come to fruition. Whether it was from being too sick to go or having too many medical bills to pay for the vacation. The trip will not happen in 2013 as my finances are not there to pay for the cruise, but with continued health and commissions it may be a possibility in 2014. Maybe?!
Wednesday, November 28, 2012
Dealing With Critics
Life has all sorts of challenges and one of those is facing Negative Nancys. They are everywhere we go, and it is next to impossible to avoid them. We find them at the work place, out shopping, on the internet, and even in our own family. They come in all shapes and sizes, and some are easier to deal with than others. When suffering from a chronic illness like IBD the critics can be very intimidating when attacking things we either find embarrassing or sensitive ourselves. Though people can still get to me sometimes I have found ways to let it bother me less and less.
A. The Teaser: These people are everywhere. It's the person that says comments about how skinny or chubby you are because of IBD, about how much you poop, or about how loud you are in the bathroom. We've all dealt with bullies throughout our lives, but when the teasing hits a sore spot it can make dealing with it even more difficult. I deal with it in one of two ways. If it is someone I will never see again I just laugh with them and move on. It does not pay to give them any power of you. If it is someone I face on a continuous basis I have found it best to make it clear the remarks are unacceptable. This can usually be done while being polite by just informing the person about IBD. Once the bully is fully informed of the disease they are less likely to tease you for it.
B. The Medical Expert: This is the person that always tells you how you can cure IBD. While we all know there is no cure there are many people who have heard rumors or are ill-informed and believe they know better than your doctors. Most of the time it is about something your eating or not eating or about trying the latest craze. I like to thank these people for their suggestion and let them know I will bring it up at my next doctor's appointment. I think most of these people are trying to be helpful so getting snarky back does no good. If it continues, I just politely let the person know that I have a team of doctors who have my best interest at heart and I follow their orders. If it still continues, I just avoid the person from then on.
C. The Downer: This is the person on all the support groups who has it the worst and is never going to get better. This can make your recovery even more difficult especially when you are at a low point yourself. The easiest and best way to combat the downer is to block him. If you are on a support group that this cannot be done, avoid reading his post. I feel positive, but realistic information on support sites are best. All others can be subject for ignoring.
Overall the best advice I have for dealing with critics is to not engage in an argument. Continuing conversations with teasers, medical experts, and downers furthers their hold on you. If you begin to feel uncomfortable change the subject or leave. If the problem continues, the relationship may have to come to an end. This is never an easy decision, but sometimes it is one that must be done.
A. The Teaser: These people are everywhere. It's the person that says comments about how skinny or chubby you are because of IBD, about how much you poop, or about how loud you are in the bathroom. We've all dealt with bullies throughout our lives, but when the teasing hits a sore spot it can make dealing with it even more difficult. I deal with it in one of two ways. If it is someone I will never see again I just laugh with them and move on. It does not pay to give them any power of you. If it is someone I face on a continuous basis I have found it best to make it clear the remarks are unacceptable. This can usually be done while being polite by just informing the person about IBD. Once the bully is fully informed of the disease they are less likely to tease you for it.
B. The Medical Expert: This is the person that always tells you how you can cure IBD. While we all know there is no cure there are many people who have heard rumors or are ill-informed and believe they know better than your doctors. Most of the time it is about something your eating or not eating or about trying the latest craze. I like to thank these people for their suggestion and let them know I will bring it up at my next doctor's appointment. I think most of these people are trying to be helpful so getting snarky back does no good. If it continues, I just politely let the person know that I have a team of doctors who have my best interest at heart and I follow their orders. If it still continues, I just avoid the person from then on.
C. The Downer: This is the person on all the support groups who has it the worst and is never going to get better. This can make your recovery even more difficult especially when you are at a low point yourself. The easiest and best way to combat the downer is to block him. If you are on a support group that this cannot be done, avoid reading his post. I feel positive, but realistic information on support sites are best. All others can be subject for ignoring.
Overall the best advice I have for dealing with critics is to not engage in an argument. Continuing conversations with teasers, medical experts, and downers furthers their hold on you. If you begin to feel uncomfortable change the subject or leave. If the problem continues, the relationship may have to come to an end. This is never an easy decision, but sometimes it is one that must be done.
Tuesday, November 27, 2012
My Safe Place
Everyone needs a safe place to go when they are feeling blue or life becomes overwhelming. I will quote one of my favorite lyrics to a song once again to take you to my safe place, "And if you really want to see what matters most to me just take a real short drive". My safe place isn't always just one specific place, but more of a general feel.
I love the outdoors, so the closer to nature I can be the better I feel. I like to run away from people to hide. This is why I like the trails in and around Chester County. There are trails that go through neighborhoods, trails that go through fields, trails that go through parks, and trails that go through woods. Whatever kind of scenery I want to enjoy there is a trail for within a short drive from my home.
I like to get out to feel the sun on my skin, smell the scents in the breeze, and listen to the sounds of nature. I like to get out and move whether that includes walking or running depends on how much of an escape I need. Sometimes I keep moving the entire time. Other times I stop by a pond or stream or climb into the rocks to get away. When I am secluded I feel like the only person on Earth.
I like all the walking trails in Chester County, but my favorite is at East Goshen Park. I like this one the best because it is where my husband and I would take our first walks together. It is also the spot I chose to have my wedding ceremony at. It brings back all the good times I have had. While there is always a lot of people walking or running on the East Goshen Park walking path I can still feel at peace.
So whenever I feel like I need an escape from the pressures of the world or my ailments I hop in the car and take a real short drive. I don't always tell people where I'm going or when I'll be back. There is nothing like the feeling of being at one with nature and time standing still.
I love the outdoors, so the closer to nature I can be the better I feel. I like to run away from people to hide. This is why I like the trails in and around Chester County. There are trails that go through neighborhoods, trails that go through fields, trails that go through parks, and trails that go through woods. Whatever kind of scenery I want to enjoy there is a trail for within a short drive from my home.
I like to get out to feel the sun on my skin, smell the scents in the breeze, and listen to the sounds of nature. I like to get out and move whether that includes walking or running depends on how much of an escape I need. Sometimes I keep moving the entire time. Other times I stop by a pond or stream or climb into the rocks to get away. When I am secluded I feel like the only person on Earth.
I like all the walking trails in Chester County, but my favorite is at East Goshen Park. I like this one the best because it is where my husband and I would take our first walks together. It is also the spot I chose to have my wedding ceremony at. It brings back all the good times I have had. While there is always a lot of people walking or running on the East Goshen Park walking path I can still feel at peace.
So whenever I feel like I need an escape from the pressures of the world or my ailments I hop in the car and take a real short drive. I don't always tell people where I'm going or when I'll be back. There is nothing like the feeling of being at one with nature and time standing still.
Monday, November 26, 2012
What I Really Do
I have to admit that I like these "What I Really Do" memes, so I created one for j-pouchers.
What my family thinks I do: There is no hiding from your family. They are around you all the time and see you through the thick and thin. This is why my family knows what it really sounds like for me to go to the bathroom, and why they think I am setting off explosives in the toilet.
What my friends think I do: I like to sugar coat things for my friends. Who wants to listen to me complain all the time especially about poop and blood? This is why my friends know I go to the bathroom a lot, but what they don't know is what really happens there. For all I know they could think I do poop rainbows, kittens (I have enough of them), and butterflies.
What my co-workers think I do: The average person spends 3 years of their life going to the bathroom. A j-pouch will spend at least 10x that. Not only do we go to the bathroom more often, but we take longer when we are there. This is why my co-workers think I am escaping every time I go. Who wouldn't want extra breaks during the day? No matter how much I wish this were the truth, it is not.
What my cats think I do: At home I usually have at least one cat as an audience when I'm in the bathroom. For the life of my I really do not know what they are thinking, but I'm sure they do not think I am going to the bathroom. Wouldn't I need to be scratching around first? So what else would I be doing, but playing in the water. That is of course what they do.
What my doctors think I do: My doctors must think I love going to the bathroom. Why else wouldn't they be concerned that I go 8-10 times a day? They love poop talk and ask me to describe everything about my pooping experience. For them pooping is fun.
What I really do: I do everything in the bathroom. I have to multitask while I'm there or things will never get done. I have done everything from clean other parts of the bathroom, brush my teeth, eat, read, and even sleep. The one thing I have never done on the toilet though is talk on the phone, so you can rest assure there. As any j-poucher can tell you, or my family, talking on the phone while pooping is not something for phone conversations.
Sunday, November 25, 2012
Where Do I Go From Here?
Life is always changing. As things change goals change as well. It is these changing goals that help determine the path of your life. Every goal reached comes with a new opportunity to create new goals and continue to move forward. My health goals have continuously changed over time as well.
In my early 20's I didn't have any health goals. I was at my low point and didn't have many life goals let alone health goals. When so much bad happens in such a short period of time, I was scared to look towards the future. I kept looking to the past and what was. It was difficult to come to terms with the thoughts that my original goals may not happen on the timeline I had originally planned. It took a long time to begin to have enough hope to begin making health goals again.
As I reached my 30's I started to feel like I could make a difference in my health again. At this point though my only goal was to become healthy. My first step was to overcome my eating disorder. The next step was to gain control over my Ulcerative Colitis. It started with taking responsibility with my medication, and the decision to have surgery. I was on my way to reaching my goal. I knew it wouldn't happen over night, but that I could get there.
Now my goals as a patient continue to evolve. I want to maintain my new found health. This is a difficult process that requires my constant attention. I need to watch what I eat because neglecting my diet can lead to digestive unrest. I also need to vigilant of my medication, and try not to miss dosages. I have to keep an eye on my weight to be sure I am not losing weight. Weight loss can be the first sign of a flare or a signal that maybe life is becoming too stressful and I am returning to my old ways of coping without food. I also am thinking of the future and how I will be aging. I want to be fit and active to keep a healthy heart and lungs. As my parents reach seniority it has made me realize what small changes mean for the long run. My health goals will continue to change as I grow older and different things pop up. That's the best things about goals. They can always be modified for what stone you land on next.
In my early 20's I didn't have any health goals. I was at my low point and didn't have many life goals let alone health goals. When so much bad happens in such a short period of time, I was scared to look towards the future. I kept looking to the past and what was. It was difficult to come to terms with the thoughts that my original goals may not happen on the timeline I had originally planned. It took a long time to begin to have enough hope to begin making health goals again.
As I reached my 30's I started to feel like I could make a difference in my health again. At this point though my only goal was to become healthy. My first step was to overcome my eating disorder. The next step was to gain control over my Ulcerative Colitis. It started with taking responsibility with my medication, and the decision to have surgery. I was on my way to reaching my goal. I knew it wouldn't happen over night, but that I could get there.
Now my goals as a patient continue to evolve. I want to maintain my new found health. This is a difficult process that requires my constant attention. I need to watch what I eat because neglecting my diet can lead to digestive unrest. I also need to vigilant of my medication, and try not to miss dosages. I have to keep an eye on my weight to be sure I am not losing weight. Weight loss can be the first sign of a flare or a signal that maybe life is becoming too stressful and I am returning to my old ways of coping without food. I also am thinking of the future and how I will be aging. I want to be fit and active to keep a healthy heart and lungs. As my parents reach seniority it has made me realize what small changes mean for the long run. My health goals will continue to change as I grow older and different things pop up. That's the best things about goals. They can always be modified for what stone you land on next.
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