Learn from patients with pain similar to yours

CatchMyPain Community and Pain Diary App to manage chronic illness

Mad, Sad, and Alone

May 02, 2015 9:45 PM

It has been very hard to live in a house where my kids do not believe me. But the last one has gone to the dark side. Now my wife doesnt believe me. The hard part is everyone doesn't beileve me and no one has done the research on it. They would see that before I did the research on it, I had all the symptome that support my infection. I went around to about several reputal medical schoolwebsites, Who, the cdc, and a few medical schools. It all went in the same order and the same description.

The doctors ask me questions but they dont feel my stomach to feel the hard lumps with the tape worms attached. They are all over my intestines. When I slide my hand over my intestines a littl3 harder, I can feel different parts of my body have the worm sliding. I thought you were only suppose to get one. I think it may be in my bone because it feels broke when it is not broke. i had an x-ray. I just want to die. If you don't have your family on your side, what do you have. I have God. I know that.That is enough I know. I need to be stronger and rely on him. But right now I am so sad. I am just staying in my room and leaving the rest of the family to themselves.

I am not willing to give up my mind. It has been strong for so long. There is nothing wrong with having a mental disorder. But there is not evidence to support that. Contrary to others, if they would take time to examine me an the things that doctors have seen and I have been reporting. They would see that it follows a pattern. I guess this is my fight on my own. I had them promise me that once they diagnose me and if I am hospitalized, they have to promise to not visit me in the hospital. That I would rather go through it all alone with the way I have been treated.

May 02, 2015 10:00 PM

I'm sorry Profiler. I'll be praying for you, and your family! 🙏🌼

May 02, 2015 10:23 PM

Profiler, One very important thing I want to tell you is that you are not and NEVER will be ALONE!!! Yes, you have God and your faith in him however, sometimes, that's not enough because you need people in the physical to support you. I have to remind you that you have many people right HERE in the community that are here to support you and listen to you and try to offer suggestions to help you out. I don't know alot about contacting the CDC, however, is there not a way to actually make an appointment and go to a branch near you (or at least in your State) so you can go and have THEM check you out? How about a doctor of infectious diseases?? I can't understand why all of a sudden your wife decided to go back to not believing in you. It makes no sense and is very sad to me. I wonder if there is a way to go online and check with the people who make the show "Monsters Inside Me" because this is the very thing they deal with. Folks that start off with pain and strange symptoms and then end up with debilitating illnesses that keep on getting dismissed by doctor after doctor and also the people end up miserable because their families abandon them emotionally and sometimes physically when they need them the most. Perhaps if there is a way to contact them (which I think they give the info at the end of every one of their shows to call if you or someone you know has a problem), you could get the much needed help that you deserve. I don't understand how a physician can ask questions about your symptoms and then not actually FEEL your body and feel the lumps for themselves. I bet if they did, they would instantly numb you up and cut open one of those lumps and pull some worms or clusters of worm eggs out of them and send them for identification and get you on the proper medication you need to eradicate these parasites. It is not fair that you not only have to live with the horror of feeling these things moving around inside you, seeing the striations under your skin (which you could see in the pictures) and to actually pull a worm out of your skin from one of those many lumps you keep getting. I wish there was something that I could do for you to help you out. If I lived close to you, I would go with you to the doctor and I would go in with you and make sure they listened to you and I would also be telling them that they need to check into the problem deeper and find out what the hell is making those lumps. I know that an MRI scan would definitely show those lumps and what's in there because that is what they are used for (taking pictures of soft tissue and being able to see what things are better than ANY other scan or test available). Please, Please, PLEASE do not let your family or those asshole doctors get you thinking that you are delusional because you aren't. YOU know your body better than anyone else in the world... Better than any doctor or anyone at all who may have serious problems that you are experiencing. Please keep me posted as to how things are going and in the meanwhile, I am going to check out some things and find out how to get in touch with the people from that TV Show, Monsters Inside Me. I will do whatever I can to give you some direction or at least try to see what I can find through research on my end. Who knows, it may just get you to where you need to go to get better. That would certainly make things better for you and that is really all I want for you. I can't imagine the torture. Well, I'm off my soap box for now and I hope that you are able to get the help you need from whatever I can find on my end. I really hope I can help you at least get started in the right direction. I hope you have a pleasant night's sleep and that you have a better and more peaceful day tomorrow.

May 02, 2015 10:47 PM

Thanks so much Always, Your words are encouraging. Your help will be apprecieated. I am just sad being alone in my house. I am just locking myself away in my bedroom. I have my tv and a computer. I sort of feel the same way as when I was 15 years old when I went through a serious depression. For 7 months a didn't want to be around people. So many people are ready to give up on my mind. I hace always had a strong mind. People would come to me for help. They still do to some extent. I just donT get out much. I am not giving up on myself. i told them I stood by them all these years and would believe anything they say because I am loyal to them and until everything has been thoroughly checked, I would not doubt them.

May 03, 2015 9:21 PM

Thank you, Profiler, for those wonderful compliments. I am very glad to hear that you are not going to give up on yourself. You have too many people here that will be here for you when you need us. I know that alone feeling all too well. I, too, lock myself up in my room with the computer, cell phone and my television. There are certain things that keep me relaxed and I have a routine, albeit, I really don't do much. I make sure I am available for my family if they need me to take them to appointments, I go to my own appointments and other than that, I spend time in my "safe place" which is my bedroom with my little ferret, the tv remote and some shows that keep me distracted, I can't imagine the pain you feel from your children after standing behind them their entire lives and always believing in them and then they don't believe in you. I guess you just have to try to understand where they are coming from and that they don't understand how all of these things can happen and cause you such agony and yet doctors are saying that there is nothing there. I went through that for many, many years with the doctors telling me that I had nothing wrong and all my scans and MRI's came up normal, etc... Part of that made me very happy, however, being the ONLY person who knows my body like I do, I knew that there was something drastically wrong and I needed to continue to pursue it until I found a doctor who would actually listen to me. Hang in there, Profiler.... If there was a way that I could send you a PM, I would and I would give you my phone number and you could call me ANY time you felt the need to talk to someone. Perhaps in the new version of this app, there will be a way to do that. Until then, I'm here....... Sending you gentle hugs and positive healing vibes.

May 04, 2015 4:52 PM

Hey Profiler! Hope you're feeling better today, and not so alone.doctor). And when you constantly correct me itraying for God to be with you & guide you. It's heart breaking to know your wife & children don't understand & would rather ignore you than to try and even get a glance of what you're going through. Like AlwayZ said, we're here for you and would be there for you if we could... Because we know what it's like.

Have you tried to get your wife to just listen to you, to tell her how alone you feel, how judged you feel, how heartbroken you are? I know my husband's supportive of me but I still have to speak up & tell him what I need from him (or don't need). Just yesterday I was talking with my stepmother on the phone and every single time I said something wrong or not quite on target my husband would interrupt and say the right word (s) or sentence. It made it harder for me to talk to her and to concentrate. When I got off the phone I simply told him, "I know I get facts & statements or words wrong, but you know I can't help it (per the doctor). And when you constantly correct me it not only confuses me more but it stresses me about something I have no control over. Please stop doing it!". Of course I feeling have to repeat that again & again. Lol

And I have realized that as much as I suffer, he suffers not knowing what it's like and is afraid of losing me. I also have began to "run him off" for awhile because 1) he needs some downtime, & 2) when I feel my worst, he's my easiest target to get angry with.

Since we got our dog I have felt less lonely and he's amused me a lot. No, he can't talk with me but he sure picks up on when we can play and when to leave me alone. He's already trained to go outside & our yard is fenced, so I just open the door; I feed him & water in his dish. And I throw his ball... His favorite! He's also reduced the stress between me & my hubby. Maybe you should get a pet.

I actually thought about that show AlwayZ mentioned too. You really should consider contacting them. If not them then ask to go to a hospital like Mayo or St Joseph's. I'm still praying for you & your family. Hugs & prayers...🙏🌼

May 11, 2015 8:58 AM

Thank you for you kind words, both of you. I can tell we lead very similar lives. Things have been a little scarier lately. A large tape worm moved and came up into my skull on the outside scalp area and rested in my eye sockets. It scares me that it will detach my retina or the optic nerve. I have got use to them moving around but that idea terrifies me. Then there is an area of my upper arm that has felt broke for a long time. I had an X-ray about 7 months ago. They said it was fine but it had calcium build up on it. I didn't think to ask why would it have that. My knowledge of that area is that calcium breaks down and moves to sites that need it for repair. This bone where all the pain is I use to press on that area and feel things gushing out. And I would feel a worm or two go back and forth for like fifteen minutes and then go back. I did some reading and found out you can have them in your blood stream and it can get live in the marrow of a bone. I think that is how my arm is broke now because that is the exact spot. There were a couple others but that was the main one. I going to the doctor today to get it confirmed it is broke. It moves a little back and forth and clicks there. But I did get some good news. Whether it will help or not, I don't know. The doctors have not proceeded because I have not had an elevated eosinophil count. I get a reply from the CDC that said I didn't always have to have one and that it only happens at certain times. So whether it is helpful or not, I don't know. I sent a message to the doctor.

May 11, 2015 10:03 AM

Dear Profiler I want you to know that you are not alone. We may not be with you physically but we are with you through this site. Day or night if you need to talk to someone do not hesitate to reach out. Someone will answer you. I know it is painful that your family doesn't want to believe you. But you have someone better than them in your corner and that is God he will never forsake you in your time of need all you have to do is call out to him and he will answer. Like Alwayz and Flappsy said maybe you can reach out to the tv show monsters in me and could help you, they may ask you to appear in their show before they doanything to help. It would be a small sacrfice of your privacy, but if I was in your situation it would be woth it if can help get treatment for them. Will be praying for you.

May 11, 2015 10:00 PM

Profiler, so far here is some information I have retrieved for you about the show Monsters Inside Me. The Production Company is called Optomen USA and the President of the company is Maria Silver). Their website is www.Optomen.com. Their info is as follows:
Optomen Productions, Inc.
225 Varick Street
Suite 400
New York, NY 10014
Their Phone number is 1(212)431-4361
I will definitely do further research but this is where I have gotten to so far. Perhaps they will be able to direct you where you need to get started to get help and then move further along for treatment, etc. I pray that this information is helpful. I basically started with Monsters Inside Me, found the production company, the doctor and the President of the company in the USA. along with the phone number. I believe that they are owned by another media company but have to look into that for you. At least there is a phone number to get started with and they may be more helpful than we think. I am on YOUR side, Profiler. I want to see you get the help that you need and also to have your family realize that all this time you have been suffering and that you need to have THEM on your side as well because you always need the support of your family and friends. As for me and as you have seen, Flappsy, Weezie and myself, we are just a few of the people here who care about you and want to help and are always going to be here to support you, listen to you and to try to advise and/or guide you in the best possible ways we can.You are in my prayers and thoughts and hope that you can get help and get better. Please be very careful with worms around your eyes, there was a show that featured a young man who kept getting sick and having the feeling of worms in his head and then he couldn't see well... Turned out he had a pork tapeworm in his eye socket. So, please show this to your wife and make sure she understands that all of this is very real and very possibly happening to you. All the very best and I will be keeping an eye on your posts to follow your progress.

May 21, 2015 6:06 PM

I know the show Monsters Inside Me also. Profiler, you probably just need to go talk to someone like a therapist.

May 21, 2015 6:13 PM

Please, go and to talk to a therapist. My mom went to talk to a thearpist one time and, it helped her.

Ready to start relieving your pain?

Join Community