Ever been on a liquid or supplemental diet for your IBD, or been on TPN, like me and not been able to eat anything? Well it sucks! So here are 5 tips that I have developed of the last 14 weeks, that make not eating just a little bit easier! Look at tip 4 if you have trouble doing preps for procedures! Hope you enjoy and that this helps you in your battle against food as much as it has helped me not eat in my not so normal life.
So as some of you know, for the past 4 weeks or so I have been experiences headaches and vision problems. I went to the ER two weeks ago to have an MRV, which is different from an MRI, done of my brain and we didn't find anything. So the next week I saw an ophthalmologist who checked out my eyes, and everything was an least anatomically good with my eyes. This past week I saw a neurologist. Well actually I saw two neurologists, not sure why, but I saw one and then the other. They have a few ideas of what may be causing my headaches, but are not sure yet.
In the mean time, they put me on two medications. One I am supposed to take two times a day, and the other I am supposed to take if the headaches get too bad. So I am going to start off by saying, I do not like my new medications. I struggle on a regular basis of being super duper tired, this medication is ridiculous! I can barely keep my eyes open. I mean come on now, I am getting like 11 hours of sleep a night, I should at least me able to make it through the day without falling asleep....
On top of that, this medicine gives you a wicked appetite, which makes not being able to eat like 4 billion times more difficult. I was already struggling with not eating, and now it's like impossible, It's worse that prednisone, which is saying A lot!
So now I am sitting here wondering, Is it worse to have headaches and vision problems, or is to worse to be ridiculously tired and hungry all the time. I really think the side effects are worse than the headaches, because I don't think I can make it through class tomorrow if I am still this tired, which defeats the purpose of trying to fix the headaches. Why do medicines have to have so many side effects, it makes me feel I have to pick the lesser of two evils. So if you see me tomorrow, I will probably look like a zombie as I try to figure out my new medication in my not so normal life.
Ever had someone tell you that you look tired? How did that make you feel? Uh it probably kind of made you feel like crap. Ya if you didn't feel like crap before, you definitely did after. Now imagine always feeling like crap, for example, me. See each and every day, I feel pretty crappy, but ya wanna know what makes feeling like crap even worse? When someone tells me, "Hey you look like crap!" Okay, so they don't say it in those words. It typically sounds more like
Those may all sound different to you. But to me, they all mean "Hey Crohnie, you look like crap today," and sometimes with the an additional "so get your crap together!"
See, when I put it that way, it doesn't sounds very nice does it? So please refrain from telling me how bad I look, because it usually means I feel worse than normal, and by you pointing it out, it is only going to make me feel worse, much much worse. Instead why don't you try telling me how good I look. I will always take a compliment, but truth be told telling me, "you don't look sick" is not a compliment. It just means that I look like everyone else, so no that does not count as a compliment.
Okay new suggestion, going back to the age old rule, "if you don't have anything nice to say," don't say it at all. Bottom line if you don't have anything nice to say about my appearance, keep it to yourself...forever...I don't want to hear it. So that is my rant of the day, and I am positive is applicable to other people suffering from Illness. Next time I look like crap, please keep it to yourself, so I can go on pretending that I don't have an awful disease in my not so normal life.
Being sick makes moving around so incredibly complicated. Not only because I feel crappy, but because I have to lug all my medical equipment with me wherever I go. For me, whenever I travel overnight, I have to have my special backpack, my pump, my TPN, my TPN multivitamin, and all my medicines. So needless to say traveling becomes complicated. Despite its complexity, I have found that finding ways to organize your medical supplies and making check-lists of what you need, goes a long way.
When traveling with so many supplies, you have to be organized, you have to know what you need to pack and where you are going to pack it. Because my TPN has to stay cold when I travel, I have to use an insulated box. I save the boxes that my TPN and supplies are delivered in, and when I travel, I just pack them back in the box! This is only half the problem though, because I then have to pack my IV pole, my pump, and my special backpack. So I make the pole as small as it goes, because I know I can just slide it across the back seat, and put my pump and medicines in my backpack. That way all of my medical supplies are together when I unpack!
In order to make sure I don't forget anything, I have started making check-lists. One time I forgot ostomy supplies when I was traveling and although I was only going to be there one night, I couldn't take the risk of my bag exploding and not having a replacement. So despite being away from home, I had to find ostomy supplies...it's not as easy as it sounds. Another time I forgot my medicines, which is a big no-no because I can't go a day without my medicines. This time CVS was kind enough to give me a few days worth of medicine. But having had these mishaps, I now make a medical check-list of all the things I need to pack, and pack those first. That way I have them all ready to go, while I do the rest of my packing.
So wether you are traveling overseas or traveling overnight, when packing medical supplies make sure you know how you are going to pack them and what you need to pack. Always remember the rule: It's better to have too much, than too little. Medical supplies are not the thing to skimp on when traveling. I know that learning to travel with all my medical supplies has been a hard journey, and hopefully you won't make the same mistakes I did, in your not so normal life.
Going into a doctor's appointment can be entirely overwhelming. They use big words and talk a lot, and in general. when people use big words, I just smile and nod. But when you are at the doctors, you can't just go along with whatever they say, because you might miss something important and later regret the decision you made.
Having been sick from the tender age of 12, I have had to learn to be my own advocate. My parents have always come to appointments with me and have always been the ones researching different drugs and diets, but now it is my turn. I am learning to take an active role in understanding what is happening with my body.
Before starting TPN, I research enteral and parenteral nutrition and looked at various studies including the two methods of nutrition. Although there isn't a ton of information out there about these treatments for Crohns, I was able to learn the basic pros and cons of each method. That way the next time I talked to my doctor, I could say exactly why I wanted to do one more than the other. I have learned that if you have researched treatments and understand the various options fully, doctors appointments become more of a conversation, rather than a lecture!
So take charge of you health, and learn to be involved in the decision making process in an intellectual way. I think you will find that you will become more comfortable with your treatments and have a better relationship with your doctor. I know that learning to do my own research, has helped me better be able to handle my situation, in my not so normal life.
I've got 8 scars and am missing two feet of intestines and my life isn't normal, but whose life is normal? I want to use my experiences to help you, even if it means sharing embarrassing experiences. I am also looking to break the stigmas associated with IBD in order to make living with IBD just a little bit easier. Hope you enjoy!
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