For you, the most important thing to do is take care of yourself. You are young and want to have a long and productive life ahead of you. You wont be held down forever... remember, this will pass and life awaits you with open arms.
Yeah your right though - i have my whole life ahead of me and i need to remember that. Its hard to not live in the now though. When this started happening and i didnt know why, i stopped caring about the future and just wanted to live in the today and now. Now that supposedly i am on the way to recovery, i need to force myself to calm down and just focus on healing...Its hard though...
Although it's hard, keep your head up and stay positive.
Don't come down too hard on your mom though - she loves you, and often you don't realize it until many, many years later... but your mom will always have your best interest at heart. They may not always be perfect, but they do the best they know how to do.
Okay so at the end of 8th grade (im in 10th right now) i got the chicken pox. Upon recovering i went about my life as normal, nothing changed. I joined football just like i did the year before, we had a successfull season. I had a girlfriend, good grades, lots of friends and success - things were great. Then i went to the docs just for a check up and we noticed i lost about 20 lbs from the beginning of summer to the end of football. At the end of 8th grade i was 5'11'' and 180 pounds. The doctor just put it up to puberty and growin and sports. Football isnt all that hard though, i have been swimming since i was 9 and i would always be out of shape when i came back after football because of all the standing around we did. Okay so then high school swimming came around i had an awesome season. I made more friends, and broke a freshman record. Then after swim team in the spring i just kinda did my thing, went for runs in the nice weather, hung out with people - normal stuff. But we noticed another collective 20 come off. We went back to my doctor and he wasnt concerned, i felt good, i was performing good, and everything was peachy. My mom being worried asked for a blood test and a urine test just in case. The pee came back fine but the blood came back funny. This led to a long line of many many many doctor appointments. So then summer came. I still felt fine, i did traithalons, i hung out with friends, and had a fun summer. So then school starts and i didnt do football because i was too small and wanted to live lol. But school started and despite a lot of trying i hadnt gained any weight - at one point i was drinking 1100 calorie drinks before bed made by ABB and those still did nothing. We started seeing doctors because i wasnt improving - i still felt fine throughout all this but my bloodwork was funny and i wasnt able to gain weight. We saw an endocrinologist, oncologist (cancer doctor - sorry just in case my spelling is off), and GI doctor. I had to do many different tests, i had an endoscopy colonoscopy done, i had to do a 72 hour urine sample, numerous blood tests and still they all had no real help. We thought i might have had celiacs, or thyroid problems or who knows what. so swim season started up again for this year (tenth grade) and berea swimming is a tough sport - its known to be a hard sport and to have dedicated, hard working atheletes. well when swimming started i had lost another 10 lbs. That put me at 135 ish. Well swimming started and things were not going well. I started to decline, my performance was going down the toilet and i was getting worse. so being worried, my mom and i agreed i should go to the hospital. we went and it was probably the worst experience ever. I was there for 15 days and nothing got done. They did no tests and misdiagnosed me. They said i had an eating disorder. I DO NOT!!!! we were so pissed. My mom and i are scarred from that experience and are very upset. Well after that wonderful, and pointless visit we continued to search for help on our own. The hospital experience really gummed everything up though. It caused unecessary problems. Okay so we eventually went to see a pediatric endocrinologist and he ran some tests and said that he has never in all of his practice seen or heard of what he saw im my lab results ( if u want to know what they are just ask but ill keep that out to avoid taking too long). He gave us a game plan and was very nice and pro-active, I was maybe going to have to go to Boston to get some work done. So then we went to see a pediatric GI doctor. She is my savior. She ran some blood work and ordered a 72-hour fecal sample and there was the answer. I have fat malabsorption. A simple poop test and thats it. It took 2 years to get that done. At the hospital - i was there for 2 weeks and they did nothing!!! not one stool sample or anything. im now on meds and im not exactly sure what the docs orders are because she was out of town because i think she had a class to teach or seminar or something but we are going to see her within the next week. I think my mom is being over protective though with the walk thing. I know my mom loves me with all her heart, this has been the most trying thing and i think we have grown closer through all this. So much happened through this experience that believe it or not, this is the short version. Im a bad story teller so some of it might not make sense or flow so if your confused about something just lemme know and i can try to make sense of it lol!
Oh and the A-holes (pardon my language) that did nothing for me while i was in the hopsital was UH - University hospital sucks, im sorry but they do. I also heard of another case where a lack of patient care occured and almost cost a patient there life. I could have died too if my problem wasnt solved. I started gettin pain in my side which means that around 90% of my pancreas was damaged.
The good doctors are at Metro Hospital. They are the good guys.
So yeah it has been a long battle and im ready to end it. Its just hard though, some days its a battle just to face the day...
I am very sorry you have had to endure all of this, but I am very glad they have found the problem. So what now wtih your pancreas? Can that be rejuvinated or what is being done to turn your health around?
It breaks my heart and makes me very mad that this was not caught sooner. It really does.
I've heard a lot lately about misdiagnosis and mistakes made in hospitals. The insurance companies are really cracking down on them. I have started thinking that my mom has been misdiagnosed also (I think I told you that she is terminal and I am taking care of her). They say she has lung cancer, but I really have started thinking that it is something else. I have never heard of someone with lung cancer yo-yo-ing the way she does. She will get so far down that I literlly sit and watch every breath she takes day and night, fearful that I am going to watch the last rise and fall of her chest. Then after 2 or 3 days of this, she will liven up and will seem to be on the mend. My problem is that she is too weak now to undergo tests for a second opinion, and she is under hospice care (which I wish we had never gotten involved in) so they don't 'allow' her to go to the doctor anyway. I just keep thinking that this may be something we could treat and cure IF we could try to get another diagnosis. Sorry... just venting about the medical system and their incompetence.
What do the doctors say your road to recovery looks like? My thoughts and prayers are with you. And you tell a great story.
Thank you - it has been a long and annoying ride. Well i think with the medicine im now on, it is aiding my pancreas with the digestion of fats and is helping give it a 'break' which it can use to try and heal. i am pretty sure it can be rejuvenated.
Aww, thank you very, very much, that is sweet of you - i really appreciate your care and i am very thankful you are here as someone for me to talk to. thank you 
oh my. You told me you were taking care of your mom but you did not mention she is terminal, I am sorry. But yes i agree, that does not sound like Lung Cancer - with lung cancer one is typically always in the same state - slowly deteriorating. I am sorry it seems too late. Why do you wish you had not gotten envolved in the hospice care? Well i guess if they dont allow her to go to the doctor, that would be reason enough. Why wont they? that is just plain dumb, stupid and in my book immoral! Even if the doctors are going to tell the patient the same thing each and every day that they are going to die or they are fine - they deserve to go! Your mom has constitutional rights that should be and need to be upheld. I am terribly sorry to hear about this situation for your mom. The scary and sad thing is, is that this type of thing goes on everyday to lots and lots of innocent people - and doctors get away with it day in and day out which is really wrong and just horrible. It goes against every form of Karma and everything i know. I totally agree with you - the medical field is corrupt, feel free to vent all you want.
Well im not exactly sure what the road to recovery is looking like, supposedly im going to start gaining and getting better in about a week but the sad and scary thing is is that im guessing about half of my summer is shot. Aparently im guessing im not allowed to do anything untill i gain enough weight and there simply arent enough weeks left...
Thank you very much, i will pray for you and your mom as well. I will also do a little research and see if i can uncover anything that could possibly shed light on your scenario. Oh and thank you ; )
Now that they have found the culprit and have you on medicines so that your body can heal, I so hope and pray that you see only positive forward movement with positively no setbacks. Aside from having so much going for you from an intellectual and physical standpoint, it's obvious that you are also just a super phenomenal human being. I wish you nothing but the best in life.
Hospice - well, I regret bringing them in because their entire philosophy revolves around palliative care - meaning that they provide comfort only - prolonging someone’s life is completely against everything they stand for. I have a long blog on Hospice if you care to read what I have learned. But in my situation, why did I bring them in to begin with? Well, it all started in October. My mom had been having pain in her rib cage. She went to the doctor - they did some x-rays and they told her that they had found a spot on her lung and they wanted her to have an MRI. The results of that showed that there was a mass of some sort that was growing into the cavity of her chest wall. The area where she lives is very remote and the medical care here is extremely limited so I brought her to stay with me where we could seek out more advanced medical treatment. We acted on a recommendation for an oncologist, and we went to see him. His bedside manner was the worst I had ever seen. He looked us both straight in the face and told us that she was dying and that there was nothing he could do. Mind you, he never did any testing on his own - not even blood work. He did want to do a biopsy, but my mom had advanced emphysema and was not capable of going under anesthesia because the risk to her lungs collapsing was too great. We were told several years ago that this would never be an option without that risk, and she never wanted to risk having to live her life on a ventilator.
He sent her to a cancer center where she saw a really nice doctor. They reviewed her files and confirmed, again based only on an x-ray and an mri, that this was lung cancer. But, stated that the risk to treating her with radiation was far greater than letting the disease run its course. At that time, my mom weighed in about 86 lbs, and they said that the poison would be too much for her body. So, basically they sent us away with no hope. It appeared that our only option was to put our faith in God that they were all wrong and that this was not what they were saying. This doctor told me (but not mom) that this cancer was very advanced and that her lungs were filling up with fluid and his prognosis was that she would have 2 weeks left of life. This was in October, and if his prognosis was right, October 31 was going to be her dooms day.
Well, since there was nothing, apparently, that they were going to do mom just wanted to come back home to her house and to my dad. I brought her and I went back to my house, continued on with my life as normal and come to see her on the weekends as I always had. She was doing no worse but we were seeing no change for the positive either.
Well, I had started the habit of calling multiple times a day - just to tell her that I love her and to make sure everything was okay. It was a few nights before October 31 and I tried calling for my full lunch hour. No answer. Tried dads cell phone. No answer. This went on to my last break with was a couple hours later and I got my dad on his cell. They were at the hospital - mom was having difficulty breathing and they were running some tests in the ER. I left work and drove to them (this was a 3 hour drive one way). By the time I made it, mom had been admitted to the hospital and they said that on top of everything else, she had pneumonia. They were keeping her. I tool a 7 day leave of absence from work because I don't trust doctors, hospitals and I was not going to leave her. Its a good thing too because I swear, I think they tried to kill her. First, they kept her so medicated that she didn't know she was in the world - and that was even with me REFUSING let them give her sedatives (there was no need for sedatives!). 2nd, they gave her an antibiotic that she has a known allergy to. This gave her a bacterial infection in her stool. Her doctor was out of town so she was first seen my an attending physician that came in and kept telling her that she needed to sign a DNR so I talked to the medical director and refused to let him attend to her any more. Then, she was seen by another physician who again, seemed nice, but kept drilling it into my head that she was dying.
They then was ready to release her. She was in the worse shape of her life at that time - FAR worse then when they admitted her. She was so weak so could not stand, hold her head up, talk, anything. I begged them not to release her like that. I was sure they were sending her home to die. Their response to me was that if I didn't want to bring her home, there was a nursing home. I let them know in no uncertain terms that no parent of mine would ever see the inside of a nursing home. Their response was then that I would be taking her home. So... I did.
Feeling so overwhelmed, scared, not knowing where to turn or what to do - but KNOWING I needed help, I brought in Hospice. About the only good thing I can say for them is that they have educated me about some things and they have ensured that there is a constant communication link open between us and the doctor so that we can change medications as necessary. Based on everything I was told and then what I was seeing, I truly did believe this to be the end. I prepared everyone - my dad, baby brother, everyone....
And then, she came out of it. She was up moving around - doing light housework, light cooking, talking on the phone - she was even able to go Christmas shopping with me. By this time, I was back at work because my leave was over ... but I was staying her about 4 out of 7 nights each week to make her feel safe and comfortable.
Then out of nowhere, she had a turn for the worse. Hospice told me that they expected 2 days. This was on a Thursday night (march 6) and they advised that I not go to work Friday. I took another 7 day FMLA leave. I was due back on March 15. On 3/14, she was still holding on but just barely. At this point, it had been 9 days since she had accepted food and 6 days since her bowel had moved. All she was doing was sleeping and I was lifting her off and on a potty chair when she had to go. I could not return to work and leave her like that so I requested another 7 day leave, but it got denied. I had to request a 31 day minimum in order to be approved, so I did and it was approved. On day 11, she perked up, started eating and started regaining some strength - quite a bit, pretty rapidly. Again, hope.
Just the other day, I expressed to the hospice representative that I suspected a misdiagnosis. They shot it down and asked me if I understood the hospice philosophy. I assured them of two things - that I did understand, but that it was not shared by myself. I do not agree with prolonging someone’s life if it means pain and suffering, but by the same token I do not agree with accepting just anything someone says and I do not agree with failure to treat something that my be treatable in the name of hospice or whatever else. That is neglect, and neglectful I am not. So, they let me know that if I wanted to seek medical care that I would have to discharge hospice because they take over your insurace and are paid a huge amount to provide and pay for everything, and they will not pay for it. At this point, insurance can't. She also pointed out that my mom is not strong enough to undergo tests anyway - which is true. I just keep working so hard to get her stronger. I accept what hospice offers as long as it fits my philosophy and feel that it is in my mothers best interest, but I reject the rest. The bottom line is that until she is a little stronger I need them. I have no help (my dad is elderly too) and this is entirely on my shoulders. She cannot go to see a doctor and at least they do come in daily to take and record vitals so that lets me know where things are. They provide medicine and they train me how to do things that I have never done before (like lift a fragile patient, change dressing on bed sores, give medicines rectally when necessary, etc)
Today - well late yesterday evening - she took another turn for the worse again. It's a constant roller coaster - very emotionally draining - and by far, the scariest thing I've ever been through in my lifetime.
But that is the full story, and I have probably made this entirely too long. If so, I am sorry. But I do thank you for your prayers and kindness. You know you definitely have mine.
Wishing you a great night, but even better tomorrow.
About the doctor with the horrible bedside manner, i hate doctors like that, id almost rather have an incompetent doctor who is very nice and honest and will guide you somewhere helpful if he cannot do anything instead of having a butthead doctor like that - especially if he said that without even doing any work of his own!!! that is so wrong and really ticks me off, i am soooo sorry! ( im not trying to make this about me at all, but when i was at the hospital, the first day i was there, a GI doctor, supposedly the best UH had to offer came in and within 30 seconds she came out and said 'without looking at any of his labwork i can tell you he has an eating disorder' WTF?! we had to endure 15 days of that crap!) i am sorry it seems that your mother cannot undergo possible treatment seeing as how it could do more harm than good, that just isnt right. It also isnt right that she cant even undergo official testing to see what really is wrong.
those are two dooseys with the possibility of expecting your mother to die, and when she went to the hospital. How could they even discharge her in her state?! thats messed up, i bet we have good old incurance companies to thank for that.
Its a shame that hospice care is only for comfort, not longevity. It should be for both. Well it should be whatever the patient wants, be it longevity or comfort or both! You pay for there care so you should be able to tell them how you want to be cared for!
I am so sorry about the wring around with hospice care. They seem to be like jerks. I am also sorry that you are fighting this by yourself. Its not only a hard thing to do, but alone it must seem impossible. I am here for you. I will pray for you and you, your mother, and your father will be in my thoughts. I hope i can give you strength through this time. like you say, if only she could get strong enough to get some testing done, then things could get underway.
I am truly, truly sorry about this dance that you have to do. Your right, it must be very very draining both physically and emotionally.
Your story was not too long at all! you told it very well!
If there is anything i can do, lemme know.
If there is something lighter you want to talk about we can- maybe to give your mind a short respite. Have you seen any good movies lately? or read any good books? im sure you havent had a whole lot of time to do much with your mom and all. What restaraunts do you like? or dislike? what type of movies and books are you into, or even video games? you dont have to answer all of those, just some suggestions to maybe lighten the burden and give your mind a break!
I'm sorry you aren't feeling well and I'm sorry you are feeling bored and restless. Hopefully being on Mindsay can help aleviate some boredom.
So what is up? How long have you been a member of Mindsay, do you enjoy it? I am on spring break right now, what about you?
I used to teach children with special needs, grades 4 - 12. Now, I work part-time at my daughter's school and at my church's school. So uh, yeah...to make a long story short I'm on spring break, too. Today is my last day of spring break. 
Oh cool, one of my mom's friends teaches kids with special needs too, maybe a little younger though. Thats cool that you work at your daughters school! You guys are on the same schedule, and if you need to take her home or something, your right there, you guys could carpool too lol. Im sorry that today is your last day of break! Mine just started, we go back in a week. It is spring here in Cleveland but it just snowed! Whats with that? X-/ haha. Its warming up slowly but surely - im definetly ready for nice weather, break out the shorts and sunscreen 
I'm sorry to hear you've had so much trouble getting a proper diagnosis and treatment for your pancreatitis. That really sucks, but thank goodness you finally found a decent doctor and you're on the proper treatment!
Pancreatitis isn't anything to mess with, and I can understand both sides of your frustration and your mom's worry. My dog (I know you're NOT a dog, but this is related, honest) had chronic pancreatitis for the last 6 years of her life and it was really had on her (and us!). She had elevated liver labs when she was 7 and the prescription diet the vet put her on was so fatty, it gave her pancreatitis. She was hospitalized for 10 days and was in terrible pain from her pancreas trying to digest itself and the organs around it. A month or two later, even with a very strict diet and nothing at all treat-like, she got so sick we had to drive her 6 hrs to a vet teaching hospital. That was such a scarey weekend!
I became so paranoid about her possibly eating something that could make her sick that I wouldn't let her out of my sight to visit at a friend's house, walk in the park (might find a dropped chip or something) or go for a car ride. If I kept her in the house, she'd be safe. I'm sure that's what your mom is feeling when she doesn't even want you to take a walk outside. Maybe if you asked her to come along so you could both just stroll together and you could let her know how well you feel by being able to do something besides sit inside. She could keep an eye on you at the same time and maybe worry less.
You have lost quite a bit of weight, and until you find out from the Dr whether or not you can exercise, take things easy. It's hard to be patient when you're feeling well. Can you get a phone message to your Dr and ask about walking? Just a thought.
Good luck, and welcome to Mindsay!
Oh my, I am really sorry to hear about your dog. Its a terrible thing for any person or animal to experience: having a serious illness. I understand what you mean, it takes a toll on the afflicted and the ones around them.
Maybe ill try that, asking if my mom wants to go with me - thats a good idea, thank you!
Yeah, your right i just need to learn to relax and have enough maturity to realize a little time off now will help in the long run...but thats really hard!
Thanks for the welcome! so how long have you been at Mindsay? Do you enjoy it?
I hope you're feeling a little better now in mind as well as body. Sometimes it's hard to have maturity even when you're "mature" like me (early 40's)! I would imagine it's been harder since you've been so athletic.
Keep us posted on how you're doing!
Yes it is hard. When this started and things were turning to go sour, i started living in the now, and today. But now that suposedly things are getting better, i have to force myself to understand that a little time off now will help for the future. which is hard, very hard.
I will thank you!
So on a lighter note, seen any good movies? or whats your favorite restaraunt? im just trying to think of lighter, different things to think of to keep my mind off of things lol!
What are you allowed to eat now? Anything you want? The Olive Garden chicken marsala sounds really good right now. Even just their salad, some breadsticks and minestrone soup would work at this point. (I'm hungry!)
What part of the country are you in? Any pets? Siblings?
Yeah i can eat whatever i want as long as i just take my medicine. Yeah i used to get the chicken marsala everytime i went lol! Yeah i love there soup and salad! yummy!!! Actually though my new favorite restaraunt is panera. I keep saying, ya know how that one guy did that documentary 'super size me' where he ate nothing but mcdonalds for 30 days. If i had to do that i would do panera for 30 days lol! do you like macaroni grill? thats another good italian restaraunt.
I am in Berea, Ohio which is a suburb of Cleveland. Well i have a sister and live with her and my mom (parents are divorced), and see my dad on wednesday evenings and every other weekend. My sister has a rabit but we all take care of it so its ours basically lol, its really cute (yeah im mr. macho lol) What about you?
I Love Panera! Their smoked turkey sandwich w/bacon is the bomb! I like their soups, but there's too much onion and I end up getting heartburn. I also really like Claim Jumper restaurants. They have great steaks. I was just craving their cornbread earlier today. Macaroni Grill is very nice, but I've only been there a couple of times. They don't have on any closer than 50 mi away.
I've got a niece who lives in Lancaster, OH with her husband and 3 kids. She says you get some really wild weather in OH. I can do w/out wild weather, personally. My husband was in the Air Force for 26 yrs and we lived in North Dakota, England and South Dakota. We were from CA originally, so coming back her just before he retired was great.
We have two yorkies, a brother and a sister. They're crazy! I had a rabbit when I was about 5, but he scratched the hell out of me. Not a friendly bunny! I heard you could train bunnies to use litter boxes, like cats.
Ive never heard of Claim Jumpers, whats it like? I like steak, filet mignon is great and so is a new york strip! yumm....*drools* I used to love Ponderosa even though they dont produce the best steak because they are a chain they have a decent buffet but my tastes have changed and i dont really like it anymore - its garbage and gives me heartburn and leaves me feeling like junk lol!
Oh yeah dont get me wrong, Ohio has all 4 seasons and it can be really pretty and fun with the weather! Oh wow, you traveled a lot! What was that like? Was it exciting or was it more stressful?
Oh my! My sister dogs sits for our neighbors sometimes and they have 2 yorkies, they are hyper even though they are getting a little older. Really? Our rabbit is the cutest thing! (agian, the macho-ness in me lol) It licks us and if you walk around the house, itll follow you, shes cute. Our rabbit is litter box trained haha!
I appreciate the advise!