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I am sorry I haven't been supportive. I

Mar 19, 2015 7:28 AM

Hey guys!

I'm so sorry I've been out of touch. Things of been hard lately. I don't think I've ever been so depressed. I have had this condition with the parasites in me and I cannot get the help that I need. You know any time that you go to your doctor or to the E.R and tell them that you think that you have worms or parasites in you and that you feel them moving at times and that you're in great pain, they automatically send in the psych unit first. I find it incredibly horrendous . But what can you do I have been to nine different visit and I have not been able to get the help I needed. One doctor was kind enough to do a blood test and it came back normal. He thought that he had the answer to my question. But the way he didn't realize is that that test fails to answer whether or not you have the problem all the time. Parasites or misdiagnosed by doctors 85% of the time according to a medical magazine. It is just a very distressing. I just wish instead of them trying to prove me mental first, that they would try to rule out the fact I have parasites. That would make me feel so much better. I told him that I only have movements in me about five minutes a day. But every several days, I develop these things that feel like cyst. They are circular, they are one and a half inches from one side to the other, about a quarter of an inch going inside is indented, and the middle is a sac. I call it a sac because it feels slightly rough And elevated. It is About half an inch and it is not wet liquidy, but it hurts tremendously. It hurts like an eight on the pain scale. I really think this is when there is more production. I broke one and pulled on it and when I pulled it out, it felt like a long very thin worm. But even then I didn't think it was a worm.

This whole thing started with intense pain in my right arm, right breast, right chest closest to my arm, and under my right arm pit. After that came hundred hundreds of nodules. At no time during then did I think of worms or parasites. After that, I had two huge lipomas that were an inch and a half thick that started on each side from my sternum to the end of my rib cage. And they just fell off. They fell off on different days but they fell off. At first they went into the middle of my stomach and that was sort of creepy. But then they dissolved. They sent me to a dermatologist, he said that that never happens to lipomas. I had to have those for 10 years. So now there doubting me. I read up on it and parasites feed on fat and sugar. By the way, I haven't gone crazy researching this. Maybe three days in four or five months.

I am getting rashes all over my body. During those rashes, you can see white lines traveling up and down side to side. Sometimes it doesn't need to be a rash. You can just see the skin elevate and feel the elevation moving and then disappearing. I have felt little holes inside me where I can feel them going in and coming out. Sometimes I can grab on them and pull them out. I can pull them out a great distance. But I can't get anybody to look at those, to feel those, to do a stool sample, To do a CAT scan since I feel them in my head. I told them that I can deal with the movements. They won't make me crazy, but then I don't feel that it is normal. And that they should look for answers. But that I know it is out of my control and then I can only hope someone will take it seriously.

In the beginning, I was part of the problem. I would tell people about what was going on and they would do nothing. They would want me to talk to a or my psychiatrist. That would make me mad. So I would get upset with them and they thought I was overly emotional and too stressed. That happened a few times. Then I went back and explain to them what it's like to not have a doctor listen to you especially when you feel something is really wrong, when you think something is severely wrong. That you begin to feel desperate. So I said that explains my actions. That would make things worse. It was liKe if you have that symptom and you are stressed something is serious, then you must be unstable even if they kindly say it in a condescending way So I told them that now I can only wish I had a doctor will come along and take me seriously. And until then, I will remind them of my symptoms but not get emotional. They have been sending meet you different specialist, but then spend time reading the other docs notes telling them that they think it is psychiatric in nature. So the use of the specialists was a waste because they gave them the diagnosis before he can determine what I had for himself. They literally spent no more than five minutes with me. I was so upset and depressed. I just cried.

I think the worst part about this is that my family doesn't believe me. They have no basis for not believing me. Whenever my skin raises and starts to travel, they will say that is a vein and that is what veins do. All I know, it is my name my veins never did that. Anything for testing the doctors have done the blood work is sufficient. All they have done is a CBC and metabolic test. Oh, I forgot, they did do an ultrasound on my shoulder. There were so many areas they kind of checked but did not. The one person that I really wanted to believe me no matter what is my wife. She says she doesn't know what to believe. I thought the fact that I have never made up an illness or tried to get care for something I didn't have,, that she would just believe me. I thought my history would prove Who I am but it's not enough. She's confused. And that has left me with the deepest sadness I have ever experienced. She said don't you think the doctors know what they're talking about? I responded yes doctors always know what they're doing. That they always make the right diagnosis. That people don't have to wait months or years for doctors to figure out what is wrong with them. That doctors never make mistakes. That lab work is always definite to determine what you have and don't have. Of course I was being sarcastic. But it's not like anybody doesn't know that. We have all heard the stories of situations like this. They have TV show of stories like this. And yet they can't believe me. My kids don't believe me. I know they love me. I think that the doctors have answer the question. I don't know that there are so many other test that can be done to rule this out. They don't know that it's has to have been done can be inaccurate for this diagnosis. Like I said, having your family not believing you is the deepest hurt and betrayal. But I love them with all my heart and I mean the world to me. And I know they love me very much. I just wish I knew where all of this is doing to me. I am matching all the time what this is doing to them. I mention it is very hard in them. Taking me to hospitals and doctors. Giving me a special care because of my pain. I was just inform the other day that I am pretty needy. I have always had my mind set on not using my family and we cannot be azy. But driving me to my doctors appointment is hard on them. To pick me up something as a grocery store or pharmacy is difficult for them at times and annoying. So they resent me. Not in a mean way. They are just tired after being around a disabled, person who is sick for the past for the past 25 years. When I called her name, they automatically say what do I need? I don't think I usually need anything for the most part. I just want to talk I get closer to my family. I don't want them seeing me as a burden. I have created a hardship for them . I didn't think I was that bad. I am only 45. I told them if things get worse, they can put me in a nursing home. I don't want any resentment. If I had my way, I would rent a place for our family with a little studio apartment attached to it. After a while, they might miss me u

So that is what is going on with me. I have been very selfish. I have not been supportive of you all. I have been trying to get used to this voice recognition. Because I cannot use my right arm anymore. And I can't hold my iPad with that. I and type with that. I can't hold it to read. It hurts Way too much. So I am trying to learn new ways communicate and to do other things that I've had to do on my life. One thing is sleeping. I used to be able to sleep in a bed. Now I have to sleep in a recliner. I have to use the armrest in orders to support my right arm.. I am only able to sleep in bed for about an hour and a half and then the pain is excruciating and will keep me up for at least five hours.

I will do my utmost to be more supportive and to be around. I'm sorry that I let my problems come before helping each other as a group. You all have helped me when you have had your own problems. I need to learn to do the same. I house I just needed a little time to learn how to use my arm and work on my deep depression. I am sorry again. Excuse voice recognition. It is not the bests. Take care guys

Mar 19, 2015 7:29 AM

I've been really distant lately too. Sorry all. I'm here for you

Mar 19, 2015 10:42 AM

OMG......Profiler, I am so very sorry for the situation you are in. I can't understand why the doctors are not helping. Perhaps you need to get your medical records and travel to a world renowned hospital in another state. It could be difficult and pricey but you may find your answer. Another thing that comes to mind is that you said you broke one of these things and pulled it out of you. What color was it? Did it move? Was it attached to the inside of your flesh or did it come out easily? With all of those painful lumps, it really sounds like Dercum's (which is hundreds of lipomas that pop up and are very painful. If you check on you tube you will see cases of it and what it looks like. Look, nobody knows your body like you do. If you're feeling like something is crawling around inside you and that you can see something moving around is not normal!!! Veins do NOT do that so it is very possible you are seeing parasites that come to the surface and then disappear. I wish I had a magic wand or something, I would make this all go away for you. I'm sorry that it seems everywhere you turn, nobody believes you. No wonder you're depressed. Living in pain and having something wrong that you can't figure out is depressing and elevates your anxiety levels. Don't apologize for not being able to be here for us... Just know that WE are here for you. You are NOT alone in all of this. Please try to stay strong and hang in there. Perhaps there are others here who may have other suggestions. All the best, Profiler, my heart goes out to you. You are in my prayers. 💕🌻🙏🌺

Mar 19, 2015 11:25 AM

Profiler I am so sorry that you are going thru this. Before you started experiencing all of this had you been outside of the USA, to a third world place.
You could have picked it up there. Have you been to a Dr. of Infectious Control yet.? Maybe the next time you can pull something out put it in a container of alcohol and then go straight to a ER somewhere.If your family doesn't want to carry you call an ambulance to get to hospital. Because if it was me going thru this I would be freaking out and it would be an emergency for real.I'm not making fun or anything like that,please don't feel like that. I'm really concerned for you especially that you said it's inside your head now. I will keep you in my thoughts and prayers.

Mar 19, 2015 11:34 AM

Weezie, I am sooooo glad you said that!! I was trying to make a point about what he pulled out and never got around to what I wanted to say about actually bringing it to the doctor and showing them what came out of him... Glad we all read each other's posts!!!

Mar 19, 2015 11:42 AM

What kind of psychological issue do they think you have? Could you let them treat you for it to prove that it happens still?

Mar 19, 2015 2:46 PM

Praying for you profiler, that you'll find a doctor who will listen and care to go the extra mile. 🙏🌼

Mar 21, 2015 12:48 AM

Hang in there profiler! We are here for you! I think the above suggestions are great! If u get ahold of one of those little buggers again definitely put it in a jar and show it to everyone! Family friends and especially your doctors! My heart goes out to you! I hope you find answers soon!

Mar 21, 2015 6:32 AM

Profiler, you're going through a lot. You should definitely take a photo of whatever you put in the jar, because the doc will need it to test what's happening. I'm praying you will get answers and treatment to help you soon!🙏🌼

Mar 21, 2015 10:18 AM

Profiler I hope you can get an awesome soon. Don't give up, we believe in you and are here for you to talk too. Rant and rave all you want to us none of us will be offended. We are here to support each other and to lean on.

Mar 21, 2015 10:20 AM

I can't spell or write any more I ment answers. Lol

Mar 23, 2015 4:30 AM

I'm sorry profIdler your going Thur all that. We're here for you anytime as you've been here for us prying for you.

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