A dedicated week
Sorry that I have been a little slacking This article is a little late due to a very lengthy hospital stay. And so I have taken this moment to educate a little further into tube feeding.
Recently I have been having a hard time with my thoughts and feelings and where to go next with this blog, I have had a few people suggest I talk about a typical day for me. From the moment I wake up to the moment I go to bed. My main concern with this idea, is that from the beginning I have said this blog is not for sympathy and/ or attention for me, it is meant to spread awareness to others who may have gone through tube feeding, in the past, present or for anyone else that may want to learn more. I have found a vessel, that can be used to talk about my life and a typical day for a "tubie."
When you think of February 8-14, does it mean anything to you?
To most people it is just a regular week ending with the hallmark holiday of valentines day. And I think it is fair to say that when people think of valentines day we think of candy and chocolate. But for people like me and all the other "tubies" out there chocolate and candy is not something we wait for, expect or enjoy. However I must say that my fiancé did a great job this year as I spent the entire month of February in the hospital, the flowers he brought were a beautiful focal point, lasting much longer then the candy that the nurses and doctors enjoyed.
How many of you are aware that February 8-14 was tube feed awareness week?
I'm going to guess not a lot because I am not ashamed to say that I wasn't even aware. This brings me right back to the original point of writing a blog. I have basically became my own advocate recently, doing a lot of research on my own and sharing some of the things I have found is my main objective. Instead of living in the negative circle of failure, we need to work on a positive path, so many times we fail and we give up and we go back to our "status quo" and for some of us that is very low on the totem pole. Instead we need to use our failures to help others improve their "status quo" as well as ours. So basically what tube awareness week is, is just an opportunity to share your stories and learn from others stories. It doesn't mean that you have to wait till the 2nd week of febuary to share your story but it gives you a better chance to find others who you could help or learn from. During this week a lot of different websites, will have forums, and will have certain pages and discussion rooms open specifically for people to share and read other stories. Sometimes, without ever knowing, something we say or read is just that information we have been missing.
Before going on 2 words you will see but wont have to Google: A "tubie" is just a word used in the feeding tube world just referring to someone else who relies on tube feeds, mostly used in the pediatric side. Unfortunately some of us, like me, have failed at tube feeding. However, I am still considered as a "tubie" because I do have feeding tubes. Because my body revolted against all of the formulas they tried no matter how diluted, at a very slow rate I would be ok, but as the flow rate increased my side effects, mostly pain and vomiting would increase as well. At the slow rate there was no way I was going to be able to get all my calories and nutrients I needed to survive day to day. Although, from time to time, I do go back to trying tube feeds but so far, no success so I still rely on central line feedings. And use my tubes for other functions. My j-tube that goes into my intestine is where my meds go and contained in an ostomy bag and my G-tube, which goes into my stomach and where most "tubies" get there feeds through, mine is just used as a venting agent to minimize the nausea.
HEN-- short for home enteral nutrition, basically nutrition from tubes.
This past February was the 5th annual feeding tube awareness week, reaching out to a record breaking 1.6 million people. This special dedicated week was started to help people understand what living with feeding tubes and TPN lines is like. I have learned from experience that you can read every book ever written and visit every site ever made, but the reality is the best way to learn is by the people who have day to day experience with it. In my opinion, it is much easier to get used to the physical part of living with tubes, but the feelings and the emotional side are not routine. By looking at someone from the outside it may be very hard to see that, that person is struggling with tube feeds and feeling isolated, and not sure where to turn. Sometimes, it is just easier to give up, and that's where the negative circle keeps going back to "status quo." Just a short time ago I was there, diagnosed in 2009, started with the NG tube and stomach tubes in 2011, I tried to hide as much as I could. Like most people I try hard to not show emotions, but I felt isolated, alone, given up on, my life changed and I gave in to negativity. People suggested counseling and journal writing and support groups, they were there but I never took advantage. Recently something changed, I don't know what and why It happened but I started telling myself there has to be a light at the end of the tunnel, and no matter how far away it is, I can reach it, with a will there is way. Starting this blog was a way for me to just get my feelings out and my journey known. I honestly think that one of the reasons I kept all my emotions to myself was because I have a degree in psychology and I felt angry and embarrassed that I needed counseling when in retrospect I should be the one in the chair with the notepad not the one on the couch with the box of tissues. I still have a long way to go but I hope that my journey can help build a bridge and connections to people inspired by my story or who have questions.
One of the main things I deal with daily is pain and nausea, and because of this I rely on a pretty set schedule of medications. It might seem like a simple task to others, but because of the nausea I cannot take any medications by mouth. I have 2 alternate ways to receive my medicines, and unfortunately both require assistance and both increase my chance of clots and infections. The first way is through an IV, similar to what you would get if you were in the hospital and you were getting medicines through your arm, the difference is that mine is called a TUNNELED HICKMAN aka CENTRAL LINE---- IT IS AN iv IN MY NECK ON THE RIGHT SIDE AND IT CAN STAY IN LONGER and can have many attachments to it, so it allows me to get more then one medication and or treatment at a time. The other way I receive my medication is through my J-tube, reminder the ostomy tube that runs directly into my large intestine. Before I can receive that medication it has to be prepped, on a normal day, Javier will crush and mix all the meds I will need for the day. Because of some of the constant symptoms I endure daily, weakness, joint cramps and shakes, it is very hard for me to crush meds and the shaking and poor sight makes it hard to connect syringes to my IV or to open my ostomy and insert my medicine alone. Because of these it unfortunately makes me a lot more reliant on others then I would like to be. I do take a large amount of meds and they are quite often so it does cut in to my independence and having other people have to help me so often sometimes causes hostility and other feelings from me and my care givers. So that's my day sleep medicines and more sleep. THE END Ok lets try this again, like most people who have a chronic or terminal illness I have good days and bad days. On bad days I do want to climb under a rock and pass the day with medicine and sleep but I try to take advantage of good days, without over doing it.
On a normal day, upon my awakening at least one of the munchkins are listening closely for any motion or movement on the second floor so they can come up to aunties room. My mom watches my sisters kids daily while they work/ and or attend school, basically I usually have kids in and out of my room for a large portion of the day. When I first stopped working it really made me feel down, I felt like a piece of me was taken away, I had a job since I was 14, went to college, graduated college, worked at a company , moved up in a company, missed a lot of the munchkins firsts, birthdays, and holidays, but I did this all while being sick. When I stopped it took a bit of time but I finally realized that the company I was working for was breaking me down and in no way was working there helping me. I missed and I still miss a lot of the connections/ relationships I had made, but being sick makes me look at things differently. I now consider myself somewhat lucky, well in no way lucky I'm sick, but lucky that I get to be home and around at the prime time in these kids lives. I get to be at there birthdays, I get to see them everyday, they make my bad days good and my good days better. At first it was kind of like shielding the kids from seeing aunties tubes and lines, but now there really is no way to hide them, so they like to be a part of my daily meds. In no way are they ever in harms way, but they pick up things like a sponge and my nieces will ask if they can set up my meds and even when I'm in the hospital they will tell my mom they have to go upstairs to give me my meds. I really enjoy spending time with them, and I think it really helps because I don't babysit with the TV, so I really have had to use my creative side that is not the greatest but it keeps my mind off of my issues for a short time. So my days can get interesting. So days once the kids are gone I watch tv, however sometimes that gets pretty boring. However as a sports fan, today TV just got better as it is opening day! So I have tried to pick up other hobbies, really enjoying scrapbooking and finding so many amazing pictures , and I also really enjoy photography and making picture collages. The biggest difference in my day is there is no meal times, I do not eat 3 meals a day. I can try to eat things or drink things but sometimes the repercussions of that decision are not worth it. I am considered disabled and I am considered homebound however on good days we may try an adventure. An adventure for me might consist of a trip to target or kohl's, wearing gloves and a mask, and usually assisted by a motor cart or being pushed in a wheelchair. Throughout a regular day my mom or if Javier is off they will assist me with my meds when I need them. By the middle of the day I am exhausted, I will be hooked up to a bag of IV fluids that will flow in while I'm napping. When I wake up usually Javi is getting home and we can relax together for a while until he has to start setting up my evening routine. My bedtime routine starts around 830, I have to clean sites and re dress sites, the J-tube ostomy site gets changed roughly every 3 days and the g-tube site every day and sometimes extra if needed. I get all my nutrients overnight, 12 hours. They have to be set up, and because of some of my lab results, they have had to scale me back on my fats that go in my tpn and he has to mix it with some of the vitamins I miss by not eating. So really a day from the moment I go to bed till the moment I get up is not all that fun or interesting, but that's my day welcome:}
Recently I have been having a hard time with my thoughts and feelings and where to go next with this blog, I have had a few people suggest I talk about a typical day for me. From the moment I wake up to the moment I go to bed. My main concern with this idea, is that from the beginning I have said this blog is not for sympathy and/ or attention for me, it is meant to spread awareness to others who may have gone through tube feeding, in the past, present or for anyone else that may want to learn more. I have found a vessel, that can be used to talk about my life and a typical day for a "tubie."
When you think of February 8-14, does it mean anything to you?
To most people it is just a regular week ending with the hallmark holiday of valentines day. And I think it is fair to say that when people think of valentines day we think of candy and chocolate. But for people like me and all the other "tubies" out there chocolate and candy is not something we wait for, expect or enjoy. However I must say that my fiancé did a great job this year as I spent the entire month of February in the hospital, the flowers he brought were a beautiful focal point, lasting much longer then the candy that the nurses and doctors enjoyed.
How many of you are aware that February 8-14 was tube feed awareness week?
I'm going to guess not a lot because I am not ashamed to say that I wasn't even aware. This brings me right back to the original point of writing a blog. I have basically became my own advocate recently, doing a lot of research on my own and sharing some of the things I have found is my main objective. Instead of living in the negative circle of failure, we need to work on a positive path, so many times we fail and we give up and we go back to our "status quo" and for some of us that is very low on the totem pole. Instead we need to use our failures to help others improve their "status quo" as well as ours. So basically what tube awareness week is, is just an opportunity to share your stories and learn from others stories. It doesn't mean that you have to wait till the 2nd week of febuary to share your story but it gives you a better chance to find others who you could help or learn from. During this week a lot of different websites, will have forums, and will have certain pages and discussion rooms open specifically for people to share and read other stories. Sometimes, without ever knowing, something we say or read is just that information we have been missing.
Before going on 2 words you will see but wont have to Google: A "tubie" is just a word used in the feeding tube world just referring to someone else who relies on tube feeds, mostly used in the pediatric side. Unfortunately some of us, like me, have failed at tube feeding. However, I am still considered as a "tubie" because I do have feeding tubes. Because my body revolted against all of the formulas they tried no matter how diluted, at a very slow rate I would be ok, but as the flow rate increased my side effects, mostly pain and vomiting would increase as well. At the slow rate there was no way I was going to be able to get all my calories and nutrients I needed to survive day to day. Although, from time to time, I do go back to trying tube feeds but so far, no success so I still rely on central line feedings. And use my tubes for other functions. My j-tube that goes into my intestine is where my meds go and contained in an ostomy bag and my G-tube, which goes into my stomach and where most "tubies" get there feeds through, mine is just used as a venting agent to minimize the nausea.
HEN-- short for home enteral nutrition, basically nutrition from tubes.
This past February was the 5th annual feeding tube awareness week, reaching out to a record breaking 1.6 million people. This special dedicated week was started to help people understand what living with feeding tubes and TPN lines is like. I have learned from experience that you can read every book ever written and visit every site ever made, but the reality is the best way to learn is by the people who have day to day experience with it. In my opinion, it is much easier to get used to the physical part of living with tubes, but the feelings and the emotional side are not routine. By looking at someone from the outside it may be very hard to see that, that person is struggling with tube feeds and feeling isolated, and not sure where to turn. Sometimes, it is just easier to give up, and that's where the negative circle keeps going back to "status quo." Just a short time ago I was there, diagnosed in 2009, started with the NG tube and stomach tubes in 2011, I tried to hide as much as I could. Like most people I try hard to not show emotions, but I felt isolated, alone, given up on, my life changed and I gave in to negativity. People suggested counseling and journal writing and support groups, they were there but I never took advantage. Recently something changed, I don't know what and why It happened but I started telling myself there has to be a light at the end of the tunnel, and no matter how far away it is, I can reach it, with a will there is way. Starting this blog was a way for me to just get my feelings out and my journey known. I honestly think that one of the reasons I kept all my emotions to myself was because I have a degree in psychology and I felt angry and embarrassed that I needed counseling when in retrospect I should be the one in the chair with the notepad not the one on the couch with the box of tissues. I still have a long way to go but I hope that my journey can help build a bridge and connections to people inspired by my story or who have questions.
One of the main things I deal with daily is pain and nausea, and because of this I rely on a pretty set schedule of medications. It might seem like a simple task to others, but because of the nausea I cannot take any medications by mouth. I have 2 alternate ways to receive my medicines, and unfortunately both require assistance and both increase my chance of clots and infections. The first way is through an IV, similar to what you would get if you were in the hospital and you were getting medicines through your arm, the difference is that mine is called a TUNNELED HICKMAN aka CENTRAL LINE---- IT IS AN iv IN MY NECK ON THE RIGHT SIDE AND IT CAN STAY IN LONGER and can have many attachments to it, so it allows me to get more then one medication and or treatment at a time. The other way I receive my medication is through my J-tube, reminder the ostomy tube that runs directly into my large intestine. Before I can receive that medication it has to be prepped, on a normal day, Javier will crush and mix all the meds I will need for the day. Because of some of the constant symptoms I endure daily, weakness, joint cramps and shakes, it is very hard for me to crush meds and the shaking and poor sight makes it hard to connect syringes to my IV or to open my ostomy and insert my medicine alone. Because of these it unfortunately makes me a lot more reliant on others then I would like to be. I do take a large amount of meds and they are quite often so it does cut in to my independence and having other people have to help me so often sometimes causes hostility and other feelings from me and my care givers. So that's my day sleep medicines and more sleep. THE END Ok lets try this again, like most people who have a chronic or terminal illness I have good days and bad days. On bad days I do want to climb under a rock and pass the day with medicine and sleep but I try to take advantage of good days, without over doing it.
On a normal day, upon my awakening at least one of the munchkins are listening closely for any motion or movement on the second floor so they can come up to aunties room. My mom watches my sisters kids daily while they work/ and or attend school, basically I usually have kids in and out of my room for a large portion of the day. When I first stopped working it really made me feel down, I felt like a piece of me was taken away, I had a job since I was 14, went to college, graduated college, worked at a company , moved up in a company, missed a lot of the munchkins firsts, birthdays, and holidays, but I did this all while being sick. When I stopped it took a bit of time but I finally realized that the company I was working for was breaking me down and in no way was working there helping me. I missed and I still miss a lot of the connections/ relationships I had made, but being sick makes me look at things differently. I now consider myself somewhat lucky, well in no way lucky I'm sick, but lucky that I get to be home and around at the prime time in these kids lives. I get to be at there birthdays, I get to see them everyday, they make my bad days good and my good days better. At first it was kind of like shielding the kids from seeing aunties tubes and lines, but now there really is no way to hide them, so they like to be a part of my daily meds. In no way are they ever in harms way, but they pick up things like a sponge and my nieces will ask if they can set up my meds and even when I'm in the hospital they will tell my mom they have to go upstairs to give me my meds. I really enjoy spending time with them, and I think it really helps because I don't babysit with the TV, so I really have had to use my creative side that is not the greatest but it keeps my mind off of my issues for a short time. So my days can get interesting. So days once the kids are gone I watch tv, however sometimes that gets pretty boring. However as a sports fan, today TV just got better as it is opening day! So I have tried to pick up other hobbies, really enjoying scrapbooking and finding so many amazing pictures , and I also really enjoy photography and making picture collages. The biggest difference in my day is there is no meal times, I do not eat 3 meals a day. I can try to eat things or drink things but sometimes the repercussions of that decision are not worth it. I am considered disabled and I am considered homebound however on good days we may try an adventure. An adventure for me might consist of a trip to target or kohl's, wearing gloves and a mask, and usually assisted by a motor cart or being pushed in a wheelchair. Throughout a regular day my mom or if Javier is off they will assist me with my meds when I need them. By the middle of the day I am exhausted, I will be hooked up to a bag of IV fluids that will flow in while I'm napping. When I wake up usually Javi is getting home and we can relax together for a while until he has to start setting up my evening routine. My bedtime routine starts around 830, I have to clean sites and re dress sites, the J-tube ostomy site gets changed roughly every 3 days and the g-tube site every day and sometimes extra if needed. I get all my nutrients overnight, 12 hours. They have to be set up, and because of some of my lab results, they have had to scale me back on my fats that go in my tpn and he has to mix it with some of the vitamins I miss by not eating. So really a day from the moment I go to bed till the moment I get up is not all that fun or interesting, but that's my day welcome:}
As usual your strength and endurance is absolutely nothing short of amazing. Having known you for a good chunk of my life I know a lot of what you've gone through but thanks to your decision to do this blog i have learned quite a bit that i had no idea about. Anyone that has met you would never know just how much you deal with on a daily basis, I can't imagine how hard it is to keep a positive spin on things everyday but it just goes to show how insanely strong you even!
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