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PostPosted: Wed Aug 01, 2012 8:26 pm 
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I'm thinking of you.


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PostPosted: Sun Aug 05, 2012 10:56 am 
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Going to the ER didn't do much... However there was an opening for the doctor in saint louis the next morning (he wouldn't have another appointment opening until Sept) So we went and it was productive. He suggested a tenz unit and gave us an order for it and will be scheduling another injection this month. Monday I see my primary tomorrow regarding some other stuff.

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PostPosted: Wed Aug 29, 2012 10:50 pm 
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UPDATE

I had an injection 2 weeks ago, still the pain comes back and it sorta helped, though it seems to be hurting worse right now even more. My psychiatry Doctor did up my well mood pills and another is PRN (means once as needed every so often). In the Morning my back has been hurting horribly. So I've been on the forums, I just have not posted due to I'm in so much pain. Though now for the first time I feel a little better. I had an MRI today and will know the results hopefully by Friday due to I have the MRI on a CD. Also when I got home After I got out of the Car Door, the next thing I know, I'm on the ground and my knee is bleeding and hurts and it's dirty. So we cleaned the dirt off. Though it still burns and my hip hurts since my hip hurts.I feel I get these muscle spasms that sometimes My foot burns and hurts. Also if I don't lean over I hurt like heck and these spasms happen unless I cross my leg. I imagine I might have another injection or possible surgery due to my back is curving from my hip. I weighed 340 pounds last week and today I went a on an old fashioned scale and I weigh 328 (I haven't been drinking or eating as much, but I need to keep drinking due to every minute my mouth is dry.

I see my physical therapist on Friday. Tomorrow i'm on rest day.


So i'll update when I hear from the doctor on what the doctor says about the MRI and what happens next

I'm sure I'm in everyone's thoughts and Prayers, because I know people are praying for me all around the world with people here and I'm sure people have been thinking about me too, which I'm Grateful.

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PostPosted: Fri Aug 31, 2012 8:32 pm 
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I got the results of the MRI

My Back has gotten incredibly worse. I fell Wednesday getting when I got home from the MRI outside. My leg started bleeding. Today I leaned over in the wheel chair and it about fell over almost. Keep me and my family in my prayers and thoughts.

I know right now there is a hurricane happening, and I have many things to celebrate and my thoughts and prayers are with those who are effected by this hurricane to be okay.

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PostPosted: Sat Sep 01, 2012 10:30 am 
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I'm sorry to hear all this painful stuff is happening to you. I pray for you every night I remember to say my prayers. But it is good to count the good things you have. That's what I try to do too and it makes me feel better.

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PostPosted: Tue Sep 04, 2012 12:39 am 
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Disney Duster wrote:
I'm sorry to hear all this painful stuff is happening to you. I pray for you every night I remember to say my prayers. But it is good to count the good things you have. That's what I try to do too and it makes me feel better.


It's never a dull moment having Ulcertive Colotis, Asperger Syndrome, Cleft Lip and palate, and knowing medical terms such as if someone in a hospital says a patient is having SOB means Shortness of Breath. or NPO means no food or drink until the doctor clears it to be okay.

However I am doing 10x better right now than I was a year a, and for 7 years it seems for 7 years Medical people haven't believed me that I had Crohn's, even when we had the diagnois paper in front of them. goSince I transitioned from Saint Louis Children's to Barnes 7 years ago I've been heading downhill with GI, however now I have a good GI team, a new family Doctor who genuinely cares about me and my health.


Wednesday is Physical Therapy, and hopefully we'll know what the next plan is with my back given the MRI showed it's 10X worse than it was in May.

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PostPosted: Wed Oct 10, 2012 4:08 pm 
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UPDATE

I had a 3rd injection 2 weeks ago, and it lasted about 2 days, after that it all started hurting like hell again

We went to see the surgeon today, he said he wouldn't due to my weight and doesn't think surgery would benefit me. I then asked him then what do I then to make it go away and he said pan management, or get a second opinion. I think a second opinion is going to happen, but the surgeon is going to talk with the pain management doctor I've been seeing and that knows my mom due to she was a patient of the my current pain management doctor, so they will talk....

So All I want for Christmas is Back Surgery, although it looks like I may have to live with this the rest of my life, which is depressing and it feels like I just want to give up. I could have got help, but when my back pain happened, the spine doctors in Urbana said I wouldn't be able to handle an epidural, however I've had 3 in Saint Louis, so I feel like telling the spine doctors in Urbana to kiss it

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PostPosted: Wed Oct 10, 2012 7:42 pm 
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Please don't give up. You deserve much better health.

I wish I could give you more practical advice, but you don't have to live with this. It's possible to find a Doctor who can help you.

Don't throw in the towel.

Sophie


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PostPosted: Wed Oct 10, 2012 11:49 pm 
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Disney Geek wrote:
Please don't give up. You deserve much better health.

I wish I could give you more practical advice, but you don't have to live with this. It's possible to find a Doctor who can help you.

Don't throw in the towel.

Sophie


I won't throw in the towel, I have faith in a higher source that something will come through, Jesus will see to that, and It'll be however it's supposed to be. Maybe I'm not quite done teaching yet, and maybe my back can be saved without surgery, I'll put my faith and trust in God, and I know I can't go wrong with that...

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PostPosted: Fri Oct 12, 2012 12:49 am 
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It's a good thing the doctor said no surgery yet, due to this startling discovery. My mom has this same problem all her life, and very much like my problem plus my herniated sic. It's called Piriformis syndrome, which involves the Piriformis Muscle Obviously I'll elaborate on what that is.



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Piriformis syndrome is an uncommon neuromuscular disorder that is caused when the piriformis muscle compresses the sciatic nerve. The piriformis muscle is a flat, band-like muscle located in the buttocks near the top of the hip joint. This muscle is important in lower body movement because it stabilizes the hip joint and lifts and rotates the thigh away from the body. This enables us to walk, shift our weight from one foot to another, and maintain balance. It is also used in sports that involve lifting and rotating the thighs -- in short, in almost every motion of the hips and legs.

The sciatic nerve is a thick and long nerve in the body. It passes alongside or goes through the piriformis muscle, goes down the back of the leg, and eventually branches off into smaller nerves that end in the feet. Nerve compression can be caused by spasm of the piriformis muscle.

Piriformis syndrome usually starts with pain, tingling, or numbness in the buttocks. Pain can be severe and extend down the length of the sciatic nerve (called sciatica). The pain is due to the piriformis muscle compressing the sciatic nerve, such as while sitting on a car seat or running. Pain may also be triggered while climbing stairs, applying firm pressure directly over the piriformis muscle, or sitting for long periods of time. Most cases of sciatica, however, are not due to piriformis syndrome.



And the non surgical back doctor has known my mom and I for 12 years, and admits when it comes to unusual things health wise, that would be myself and my mom.

Also it's possible that along with this Herniated Disc I have, that I also have Piriformis Syndrome. One form of it is that you can extend your thigh/hip bone and be beyond flexibility compared to other people. Many of you may recall back in 2005, I took my Underwear off without taking more shorts of to Impress Ed Asner on the Tonight Show with Jay Leno. This flexibility Piriformis Syndrome, could explain that. We're going to call the doctor tomorrow, and see what he thinks. I'm just glad I have a new team of doctors, as opposed to a bunch of clueless dodo head doctors I had a year ago.

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PostPosted: Sat Oct 13, 2012 7:44 pm 
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Good, let's hope this good keeps going!!!

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PostPosted: Sat Oct 13, 2012 8:12 pm 
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We called the non surgical pain doctor, and he said he's going to present my case at a conference/meeting for ideas, since we need to do something. I was in the wheelchair in the kitchen on Thursday night. I got up to get some corn dogs on a plate, but then when I went to sit down, the wheelchair must have rolled away for a bit, and I landed on the floor with my thigh and back on it. Basically, I fell and I screamed of the pain, and my fiance and my mom came running to get me up. I should have put the breaks on the wheelchair, but I didn't, hence why it rolled away....

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PostPosted: Wed Oct 17, 2012 10:50 pm 
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It's been 6 months since I had this herniated disc which is quite literally, driving me to insanity and places I've never been and am afraid of. Also I'm worried about my future, if I'm stuck with this, and this negativity of some local doctors driving me to my insanity even further. My family tells me I show signs of Post Traumatic Stress Disorder. I've never felt so crazy and in so much pain. It hurts my back to talk, eat, sleep, stay awake, drink, stay calm, not lose it, not panic, or obsess over stuff. All my life, the doctors in my life I could trust and turn to, and now that part is falling apart, along with myself. I'm not giving up, I gotta keep going and the only thing is, my faith in Jesus, my family, distraction of watching movies, especially Disney, and most of all, posting stuff on the internet and on this site with so many friends.

Also trying to stay positive helps. I tell myself that. I'm going to get better, I have faith in Jesus, my family, and my future since then since I got excommunicated from the local doctor center, that it has strengthened me. If I were still seeing the doctors who decided to send me a certified letter, saying they are dropping me because I don't trust them, not even giving me the courtesy to talk face to face, and they just throw me out. They wouldn't even agree to talk to me about it, they just shunned me. The Spine Center that's an hour away was a joke, both times. One doctor said that they couldn't tell if I was in "REAL" Pain, another doctor talked to me like I was deaf. I wanted to scream at her and wanted to clarify that I'm Autistic, not DEAF. The second doctor also asked me the 2 most odd words I've ever heard from a doctor. When the doctor went to shake my hand, the doctor asked if it was okay if she touched my hand :brick: and if I knew what an Oreo cookie was... :roll:

Because of them, assholeness-like behavior, I've got more smart doctors right now that I've not had for about 8 years. Also I was dying in March due to my belly ulcertive colitis. They took me off my ulcertive colitis pills for from July of 2011, to May 2012. I had a diagnoses of having ulcertive colitis/Crohn's disease, but they wouldn't believe me, so they took me off my pills, and even when I started to get worse and lose weight, at one point 10 pounds a week, they cheered. I was glad I was losing weight, but there was no explanation for it, and in turn I was dying. Luckily a sleep doctor sent me to the right doctor that my primary refused to send us to, and because the sleep doctor did, he got in trouble, got me excommunicated, and in turn, saved my life.

I will be over this, in time, and know that I'm not giving up, until my last breath, and for any others who feel lost out, that they are not alone. And I'm also only 25 years old.

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PostPosted: Mon Nov 12, 2012 3:52 am 
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Okay, It's update time.

I now think my Ulcerative Colitis/ Crohn's is acting up.

I have an infection known as C-Diff a bacterial infection causing intestinal problems. It can be caused when on antibiotics a lot. Guilty as charged. They check to see if one has it by collecting my Dino Dung.

For more info on this C-Diff, here is a link.

http://www.ask.com/wiki/Clostridium_difficile



Also, I see another surgeon in a week, so I will let everyone know what that result is.


The other day, I went with my mom to her doctor appointment, and that is one of the doctors I use to see who decided to excommunicate me. I swear I felt like I was a decoration in the room. I've been going to see a councilor, and I am considering seeking a lawyer of the bullshit I've been through the past year with the past doctors. It would be more due to the pain and suffering I've been through, and how all this could have been avoided if they did their job correctly.

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PostPosted: Sat Nov 24, 2012 1:04 am 
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Another Update. I hope someone is praying for me, this situation is getting me discouraged.

Well I went to the Pain Management Doctor and the pain psychologist. The Pain Psychologist said that I should start aqua therapy. Though the Pain Management doctor said no to that yet, since I keep falling on my face every time I try to get up and walk. We are going to try a 4th epidural more based in the nerve this time. Also I'm on a new pill.

I'm entertaining the idea of going to a lawyer about the whole fiasco at the spine center saga an hour away from me, and the excommunication thing at the local doctor. I could use some advice on that area. Read through my posts and then let me know what any of you think about if you think I have a case or your advise...

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PostPosted: Mon Nov 26, 2012 1:34 am 
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I hope the aqua therapy, epidural, and new pills you're receiving will help you with the pain. :)

As far as lawyers, I have very little experience in that area. Still, it sounds as if you've had a lot of unnecessary suffering because of the doctors you've visited not listening to your complaints or not taking you seriously. Hopefully, your family can you help you make a decision about that. :)

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David Cook ~ "Home Movies (Looking Over Your Shoulder)"
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PostPosted: Fri Nov 30, 2012 9:15 am 
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After much thought and prayer, I'm not going to file a lawsuit. It would be too much drama and there are other ways to go about getting justice. For Instance, Patch Adams lives an hour away from where I live. So I'll write him a letter and mail it to him. I truly believe that what goes around comes around, so Carle will get what's coming to them in time.

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PostPosted: Sat Dec 01, 2012 11:35 am 
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well that's a good idea. Hope your new treatment goes well! :)

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PostPosted: Tue Dec 11, 2012 10:40 pm 
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I had the epidural today and I think it might be doing better. I have to rest for a few days. In three weeks I go back to have another injection which will be on January 2nd.

I then will have another one at the end of January. So Hopefully this injection and the next two will do the trick. Keep praying and thinking about me. Thank you all for your kind words and thoughts, I appreciate it.

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PostPosted: Sat Dec 15, 2012 3:10 pm 
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Last night I tripped and fell into a hard metal chair. My head right now is pretty swollen, especially above my left eye. I was going to see The Hobbit today, but I'm going to the local walk in clinic very soon to get my head examined. I'm sure there's a joke in that statement.

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