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PostPosted: Mon Aug 22, 2011 5:15 pm 
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disneyboy20022 wrote:
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My foods that make me get cramps and belly aches is corn, corn flour, corn meal, corn startch, and popcorn, or a lot of veggies that I like (broccoli with cheese).....and chocloate on occasion makes me had to head to the throne...


That is because if you have Crohn's and/or colitis, you aren't supposed to eat any shelled vegetables or any of those vegetables that you listed. They are considered roughage and that's what irritates the bowel and your intestines.

Also you named another thing in your post - "Pork burger" - that is also a no-no for those who have Crohn's and/or colitis.

Michael it seems that you are in total denial of what your major problems are and as a good friend, I want you to re-read what you just posted and see if it doesn't sound like a whole bunch of excuses. Your excessive weight is contributing to everything, and you are in total denial of that. I don't want to sound like a 'know-it-all', but I am one who has been there as far as the weight goes, and it is not easy to lose it, but very easy to gain it.

Michael please listen to what the doctor tells you, ask him what foods you should be avoiding, you will probably not like what he has to say, but if you want to survive all this, you need to learn to follow his directions.

Also you need to stay away from diet sodas, or anything carbonated, and if you really want to succeed, drink a large volume of water. Just as an example: at one time I was drinking one liter of water for every 25 pounds I weighed and it was really tough having to get up to use the bathroom so often. I am now at the point where a Cherry Coke Zero is no a treat instead of a necessity and I really watch all my portion sizes and stay away from fast foods, and anything 'fried'.

Please Michael, your life is nothing to mess around with, and it will only get worse if you don't open your eyes and see what you are doing to yourself. You and only you can stop this by listening to your doctor and doing everything he tells you to do to the letter. It hurts for a while but pretty soon it becomes routine and you will be surprised at how much better you feel. And you need to ask questions and look up on WebMD and ready about Crohn's diesease and what can be done to stop the pain and being uncomfortable.

We all love you, and want you to be around for a lot longer than a few more months. Please take care of yourself and know that there are people who are in the same boat as you are and they are doing well because they take care of themselves. You can do it. I know you can.

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PostPosted: Mon Aug 22, 2011 5:28 pm 
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Alright the doctor's office called back, and I have an appointment with my primary....they are going to give me nexium...an antacid pill since maybe it's an ulcer....and they have not ordered any type of pain relief...so hopefully the nexium helps...though getting that cleared through insurance is a pain in the ass...(pun might be intended...not sure) I think the reason they are going to make me wait that long for 2 weeks is so the doctor can talk and have a full half hour to brainstorm....though making me wait 2 weeks without pain relief and I am very frustrated (which is an understatement)......in the meantime...I'm at wits end...If I have to put up with this pain for 2 weeks, I already have a huge sinus infection and the stress of it all is giving me a migraine...and it's hard to rest...

Also my fiance is on some webmd site...and honestly she found something that matches it almost to a T....which is shocking me....she's on to something... and I'm dead serious........intestinal semnia....the chronic version....

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PostPosted: Mon Aug 22, 2011 11:07 pm 
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They got me on Nexium...thinking maybe there might be some sort of ulcer...and honestly...I'm feeling a lot better today than I have all month....I think there may be an increase of the Nexium sometime soon....I still have a little pain...but not nearly as bad as I was hurting this morning or anytime this month....

I'll keep you updated when I can....hopefully this is the fix to end these belly pains. Keep praying for me, or sending me well wishes and good luck...

And Also thank you everyone for your Support...This song from Brother Bear makes me think of the forum...and this site and it's members.



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PostPosted: Tue Aug 23, 2011 10:02 am 
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I will still keep you in my thoughts.

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PostPosted: Tue Aug 23, 2011 1:02 pm 
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The Pain is back.....but not as much as constant. When I got up and went out to do some errands, each time I went in a store and out my belly was hurting again. But the good news is I think we're on the right track. They can probably go up on the Nexium. And we think pretty much the pain worsens when I get up and move or walk around....for a while we were wondering it was food that made it worse, I think we've ruled that out now.....probably i'll be having an MRI in September and possibly a Barrium Swallow.

so....i'll update when there is an update

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PostPosted: Tue Aug 23, 2011 6:23 pm 
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I’ve been reading even though I haven’t posted. I’m glad it looks like they might’ve found a solution (the nexium). I hope everything works out.

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PostPosted: Wed Aug 24, 2011 12:10 am 
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Glad to here they and your girlfriend are onto something and you're feeling much better! I hope you take all the Nexium doses you are prescribed each day, by the way. I hope they and you figure out much more though!

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PostPosted: Wed Aug 24, 2011 12:37 am 
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Disney's Divinity wrote:
I’ve been reading even though I haven’t posted. I’m glad it looks like they might’ve found a solution (the nexium). I hope everything works out.


Also....the nexium is working.....however it is for sure movement or activity that worsens the pain....and since the nexium has helped a little, i've been able to take mental notes about the pain source....it feels like a tear in a muscle or nerve in my mid section of my body, and there's a place on my shoulder that hurts. My mom found the place that's hurt on my shoulder and she notices some inflamation compared to right shoulder. So we put one of those patches on the spot, and its helping....so I think we're on to something...also I would imagine their might be an increase of the nexium possible in the coming weeks.

And dvdjunkie,

I'm not in denial regarding my weight.....I realize I weigh 400 pounds which isn't healthy. I know you've been through a lot with yoru medical history, your foot, and you've lost weight and all and I applaud that. I do want to lose weight, but right now idk....it's tough having crohn's or some sorta colitis and a probably immune system abnormality disease. Also Pork Burgers don't effect me. It's not always the same thing with every single person that has colitis. Also my dad is looking into joining the YMCA so I can swim in an indoor pool, or perhaps aquatic physical therapy. Exercising in a pool probably is the best way for me to work out. Also I have Sleep Apneia, and due to my autism touchy feely thing, my cpap hasn't worked for me in the past, (main reason was they want me to wear full face mask since I mgiht vomit and breath it back into me (I was 16 years old when they told me that...which I told them I'm not 8...) Also a full face mask is the only way to work and I do have one now that I tolerate. I need to wear it every night....that will help me a lot....I'm having a sleep study done next week on the 31st to see if my Bipap needs adjustments to the levels I have...so I think if (and I am starting tomorrow I swear on my both of my grandfather's grave that I am...and will) Also I think if I go swim at the YMCA, it would be much easier to work out and all. Also the reason a full face mask really works for me is that I was born with a billateral cleft lip and palate, it was fixed by a world renound Doctor when I was probably only 4 weeks old was the first surgery...anyway the reason I have problems with masks that only cover my nose or just my mouth is since the cleft lip and palate, I have some holes on the roof of my mouth that leads up to my sinus tract and I couldn't breath at all with a nasal mask since it went through my holes and out my mouth and in the night when I slept I ripped it off in my sleep since I was not being able to breathe well. But now I have the best bipap mask I've ever had and there's no excuse why I shouldn't wear it. Also note that I don't eat those type of corn things, Corn Starch is tolerable and corn syrup is fine in ingrediants. I can't go run a marathon or around in the country..and also I've been around 400 for a few years now...I havn't went about that much, so it's stable at that weight, though I know that's not good either. Trust me I know how much I weigh and I know it's not healthy, though when I was 22 I weighed around 480, which i'm not sure how I lost it down to 411 which is my current weight...but I have Faith in the Lord Jesus Christ and everything happens for a reason....sometimes I may not understand his plans....but I trust him with my whole heart....s

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PostPosted: Wed Aug 24, 2011 9:02 am 
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Michael thanks for that description of another of your health problems. I also have Sleep Apnea and use a CPAP machine with just the nose cover, and I get eight hours of sleep at night whether I need it or not. I don't know how I would ever tolerate a full-face mask, it took me so long to get used to just the nose covering.

You still are a wonderful person and our Teen Group will continue the prayer chain until you write in one of your posts that everything is cool and you are doing okay.

Glad that you are reading my posts and PM's, because they are from the heart, and I truly think you are a good person who has been given a raw deal in their heath. Keep you chin up, do what the doctor says, and I hope you get to the "Y", that's where I go for the only exercise I get, and believe me it works wonderfully.

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PostPosted: Tue Oct 11, 2011 1:11 pm 
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Updates in order.

First off, I'm not sure if I've shared this part, which if I haven't, I should have.

In these 3 years since I've lived in Mattoon, I've never seen a GI Specialist (Crohn's inflammatory bowel etc) that is close to home. I did have a colonoscopy the first year I came to live in Mattoon. I didn't go to Saint Louis because the guy was a nut. Although that may have to do with a report of my first colonoscopy in 1998 not being in the Barnes system since it wasn't in a computer. They did not get computer systems merging with Children's Hospital until 2004, thus the 1998 report probably got recycled into a paper cup or something. So since it wasn't in the computer, the doctor's didn't look for it because they obeyed what the computer said, and not the darn patient. They relied on what the computer said entirely, which was I had my first colonoscopy in 2004 which wasn't accurate, but if the computer said so, it must be true. I Blame SkyNet :P

So my first colonoscopy that was done here where I live showed i was in remission. Although now through some obeying the computer evidence, they now say I don't have Crohn's or any type of colitis problems. Which I might entertain the idea if I was I diagnosed in the past 3 years. Problem is though, it was 13 years ago and the Children's doctor I had wasn't a quack or anything. We knew him personally. Also he's now the Boss of the GI department at Cardinal Glennon's Children's Hospital


So regarding my belly pain, one doctor came up with the idea that I might have some adhesions from my belly surgeries....possible, but the problem with that is, I've never had belly Surgery until I was 17 years old and I have only had 3 of them. One being my Gallbladder Removal Surgery, and two hernia surgeries 3 years later on the same hernia. The only other related things I had were colonoscopies, which don't count as Belly Surgery. So that doctor wanted me to see a surgeon. Although he said they might not want to touch me in surgery. I Then embraced for that I'm too fat and large speech, however he said it wouldn't be because of my weight....which I was shocked. He said the reason why is because of my Hernia Mesh Patch....if someone made one bad accidental cut, they could break my abdominal wall. He sent me to a Surgeon which I saw the other day. He says he's sure it's not adhesions given the evidence and the belly surgeries only having 3 of them. He said usually when someone comes in with stuff regarding Crohn's I see a specialist. I told him I've been up here 2 years trying to get one but to no results. I don't need a referral from my insurance to see a GI Specialist, however Carle Clinic Does. They tell you which doctor's you can go and see and it's like a gatekeeper system....and some people are saying Government telling you what doctor you can and can't go to is unconstitutional, hell it's already here. So Finally this brilliant Surgeon refers me to a Colon Rectal Surgeon Doctor. I'll get to his humorous/ironic name in a minute.

I feel like when I see the doctors around here, I have the time want to ask them, let's hook up the polygraph lie detector test while I have an appointment. The Doctors I've seen up here, are like that a-hole Dean in Patch Adams. I feel like this what Patch Adams (obviously played by Patch Adams) is how I feel about Doctors and such and I'm Seeing more of Salute the Doctor day in and day out than I do of the kind that Patch Adams represents. Which is in my own humble opinion troubling and sad. This speech In the movie is how I feel 100%

<iframe width="560" height="315" src="http://www.youtube.com/embed/Pr9ruvxA3K4" frameborder="0"></iframe>

Also now back to the name of the colon rectal surgeon I'll be seeing on the 21st.....I'll leave the link under this paragraph, rather than post the name myself, since when you've gone though so much like I have, and anyone, At some point, you have to almost laugh about it, or you'll go into a terribly depressed coma. All I have to say, this guy has got to have a thick skin mind and have a lot of humor given the name of his last name, and being a GI doctor.





Click Here for the link of the name of the GI Doctor I'm seeing, Trust me you'll laugh.

Also I'm wearing my Bi-pap at night, which helps a lot now that we have it figured out and all. oh and I also have been diagnosed with Floppy Eyelid Syndrome. Which is the most blunt and self explainable name of a syndrome I've heard of....maybe they gave up on Latin words and said heck let's just call it Floppy Eyelid Syndrome

For proof here is a link that has info on this.....odd name of a syndrome


http://emedicine.medscape.com/article/1212978-overview

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PostPosted: Wed Oct 12, 2011 1:30 am 
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:lol: That guy's name isn't really too bad, but it is funny. I think he's okay though and doesn't really need too thick skin.

Thanks for the update, but I still don't get how you don't have some kind of proof you have Crohn's disease, I mean, can't they go by the information you gave them and just have the doctors treat you accordingly?

But I hope that you have found the right doctor!

Glad to hear your Bi-pap is working!

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PostPosted: Wed Oct 12, 2011 9:52 am 
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Disney Duster wrote:
:lol: That guy's name isn't really too bad, but it is funny. I think he's okay though and doesn't really need too thick skin.

Thanks for the update, but I still don't get how you don't have some kind of proof you have Crohn's disease, I mean, can't they go by the information you gave them and just have the doctors treat you accordingly?

But I hope that you have found the right doctor!

Glad to hear your Bi-pap is working!



Well....my mom saved various files from over the years and reports and all. Also they can give the doctor who diagnosed me a call. Also I'm not all that fixed on proving I have "Crohn's". I wanna just find out what is my pain is and some of it is irritable bowel, but I something called Microscopic Colitis. Also when I moved up here, they should have sent me to a GI Specialist to begin with, instead they had another doctor do the colonoscopy who does basics, but not when your my size. The Surgeon (not the one I'm seeing next week who is Tender) said that they should have sent me to Dr. Tender the first time I went to Carle....instead I got the run around. I want to know what is the source of this severe left sided belly pain. Mainly for sanity reasons, and even if there is no cure for the pain, I would at least want pain management. It's a very very complicated experience.

I had pack pain the other day and then my belly pain went away. We then put one of those Liteaderm pain patches on my back, and within two days my back pain was gone, but the belly pain came back. My belly was probably still hurting to, but the back pain distracted it for me which is not uncommon in a lot of cases of pain canceling out a differ pain. What's going on with my belly is chronic, not acute. I'm eating some now, and I'm losing weight too fast again. I trust in God and even when I don't understand the way things happen, I have faith in Jesus that whatever happens is a blessing in disguise and has a purpose. Keep me in your thoughts and prayers. I'm going to see a foot doctor next week too, about insoles for my flat feet. This doctor I've heard doesn't like the half way insoles. He likes the full foot insoles better and that will help my feet from aching so much and give my feet support. I'm sure Bill (dvdjunkie) knows plenty enough in that department. I'll update everyone what happens possibly in two weeks regarding this, since I'll know some more info by then.


Also I had a Barium Swallow, nothing showed on that except for acid reflux, which I'm on Nexium for. They didn't do a small bowel follow through which is sorta like a Barium Swallow 2.0 with a live X ray or something. That could be a possibility I might have to do that. Why they didn't do that to begin with is....well It makes as Much Sense as releasing a Winnie the Pooh Movie in theaters the Same day as the final movie in the Harry Potter saga :roll:

Again I have Asperger Syndrome, which is a high functioning type of Autism. Throw that in with chronic colitis issues.......yeah...that can get very chaotic at times.....


Oh, and usually the Barium Swallow tastes like concrete mixed with bleach and tastes horrible, even with an adding of Orange or Cherry Flavor. I requested if possible if I could have orange but they didn't...

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PostPosted: Sat Oct 15, 2011 12:06 am 
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Wow, that's a lot to take in! I really hope this Tender guy helps, but he sounds like he really can.

I can't believe that couldn't give you freaking orange flavoring! >: (

I do not know if all things are blessings in disguise, sometimes we really do have to go through some pain. Life just can't be all sunshine. But I pray that the pain will be over, or a lot lot less soon, and there will be much more sunshine! So I'll pray for you. Of course, you are a sunny guy, with family, friends, and a girl, who all love you. That's the best sunshine I think anyone could ask for. Not everyone has that, which is sad for them. You are blessed there. :)

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PostPosted: Tue Oct 18, 2011 11:41 pm 
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Hopefully, your back pain will be gone now and the in-soles will help with any foot pain (my father probably needs those, considering he has flat feet, too).

The medical process can be frustrating, because a lot of times the doctors won't listen to anything the patient has to say in regards to what procedures they think you need to take. Hopefully, you'll have some news soon though. (just wanted to post so you know we're all reading your updates. :) )

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PostPosted: Tue Oct 18, 2011 11:59 pm 
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Disney's Divinity wrote:
Hopefully, your back pain will be gone now and the in-soles will help with any foot pain (my father probably needs those, considering he has flat feet, too).

The medical process can be frustrating, because a lot of times the doctors won't listen to anything the patient has to say in regards to what procedures they think you need to take. Hopefully, you'll have some news soon though. (just wanted to post so you know we're all reading your updates. :) )


Thank you, My Back pain went away, we put a liteaderm numbing patch on it and within a day the back pain was gone, however the belly pain came back. Sorta like one pain cancels out the other or something. I go to see the foot doctor tomorrow

There might be a chance I get custom shoes, since I'm somewhat diabetic (some of it is one of the Psych pills I am no raises blood sugar and makes me more hungry, we've gone down on it, but I don't see the Psych doctor until the 1st of November about an hour away. Something in my immune system isn't absorbing things, so I see the Colon Rectal Surgeon on Friday (His Name is Dr. Tender :lol: ) So we will have copies of the Ct Scans, some belly xrays, and the video of the Barium Swallow tests. I'm very very nervous about Friday, particularly the unknown of what will happen. My belly basically has been hurting 24/7 for about 4 months now. Keep me in your prayers and thoughts everyone. Thanks

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PostPosted: Wed Oct 19, 2011 12:14 am 
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Glad your back pain went away, but yea what is with your belly pain right after?!

I think Friday should be looked at positively because at least something is going to be done, it'll only help. As always, we'll pray for you!

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PostPosted: Fri Oct 21, 2011 6:29 pm 
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Okay, I saw the surgeon, at first he said I just need to eat healthy, exercise and get in shape, and when I told him I lost 50 pounds (he didn't let me finish my sentence which was I lost 50 pounds without trying or unintentionally) He said I should Lose another 50 pounds, nothings wrong, get in shape, bye bye he said.

However, my mother went to talk the doctor firmly, saying that I lost it unintentionally for no explanation, and a year ago I was 480 and got down to 400 without any reason or me trying. So then he said let's go back into the room and talk, (my fiancee got frustrated and didn't hear what the doctor said after we went back into the room to talk.

My mom told the doctor that if he lost 50 pounds for no reason, something would be wrong, and he agreed. So he listened to us. My mother and Myself told him about doctors see people who are fat race to judgement that says if weight is the only reason. He agreed and we told him some other stuff, such as I have some sorta Alpha-Thalassemia Trait (which I will put a link to what the heck that is at the end of this paragraph. He said well my primary should be doing something about that or other things. We told him that's the problem, the doctors won't do anything. So it's not a GI problem, but there is still a problem, which no one knows what it is....He's going to send my primary doctor a detailed report on what should all be checked out that should have been checked out a long time ago. Often when you tell a doctor that they judge by just looking at a fat person and that's the problem. This Doctor listened and I think it helped him. So we are no where right now, but hopefully some tests or something whatever it is, to find out what this pain is. 24/7 pain is hard to put up with. It wears my body down. Keep me and my family in your prayers/and/or thoughts.

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PostPosted: Fri Oct 21, 2011 6:42 pm 
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disneyboy20022 wrote:
Okay, I saw the surgeon, at first he said I just need to eat healthy, exercise and get in shape, and when I told him I lost 50 pounds (he didn't let me finish my sentence which was I lost 50 pounds without trying or unintentionally) He said I should Lose another 50 pounds, nothings wrong, get in shape, bye bye he said.


That surgeon sounds like an ass.

As a sidenote: could you perhaps break up your paragraphs a tiny bit more and also close brackets please? It will certainly make your posts easier to read.

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PostPosted: Fri Oct 21, 2011 6:49 pm 
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Doctors work by assumptions, unfortunately. I'm glad your mother got him to listen to you.

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Dr Frankenollie wrote:
disneyboy20022 wrote:
Okay, I saw the surgeon, at first he said I just need to eat healthy, exercise and get in shape, and when I told him I lost 50 pounds (he didn't let me finish my sentence which was I lost 50 pounds without trying or unintentionally) He said I should Lose another 50 pounds, nothings wrong, get in shape, bye bye he said.


That surgeon sounds like an ass.

As a sidenote: could you perhaps break up your paragraphs a tiny bit more and also close brackets please? It will certainly make your posts easier to read.


Well at least he was able to listen when my mom talked to him. And he apologized and said, we we're right. Also I think he has learned from this and he will be a great doctor.

My mom has had an idea about a doctor. She says there needs to be a Bariatrician. Since it is very hard to tell when your large, if something looks swollen, due to the fact some doctors rush to judgement like this one did but redeemed himself. When my mom told him that he agreed, however it will be very hard to find someone like that, and for people to accept that. Like my mom and fiance notice something on my left side, but no doctors agree. This guy does. He doesn't think it's a GI Problem. Also he didn't realize the primary doctor have been turfing me and such. So he is going to write a very detailed report telling my Primary Doctor what should and needs to be done of other tests. He redeemed himself and I think Dr. Tender learned a good lesson that will make him a great doctor.

It's not often a doctor actually admits their faults at all. Which is amazing. I thank Jesus. Also I pray to Jesus that something comes out and all.

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