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Mar 16, 2009 - 0 comments

I keep forgetting to update this. Tomorrow I go to the Dr for my followup and I'm ready!!!! I have my notebook and I'm going with all my info and I'm just going to lay it all out for him and just tell him that you know what I didn't ask to be like this or for my body to fall apart on me, but I NEED to know what is going on. I can't make testing show something and it's so frustrating to me for it not to but it's even harder to walk around with the I don't know! Wish me luck and I'll let you know!

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Here's hoping for the best!

Mar 08, 2009 - 1 comments

So I called the Dr's office and told the secretary that I just could not wait until my Neuro came back from surgery that I felt it was too long and my husband and I had questions and needed answers! She told me that his last day was March 19 and she had an opening on March 18. I told her I would take IT! She asked me what had been going on and I gave her a quick run down and she logged it in the computer. She asked if I had the results from the MRI and I said Yes that they were normal and that is why we have some questions and need some answers! She told me to write down everything and keep a journal. I told her I had but that when I came the first time he didn't read it and I was willing to copy it for him before I come this time if it would help. She said she could do that for me. She said for my husband to write down anything he wanted to as well and to write down the symptoms that are the most troubling right now. I said you GOT IT! I feel very hopeful and I have learned that it is ok to go in and be a little more aggressive and to get out what I need to say. So I'm going in this time and I'm going to lay it all out. I'm going to tell this Dr that it's not what I asked for, I didn't want to have my body just quit working some days for several weeks. I'm afraid that if I don't know what's going on that one of my kids could get sick later in life and I can't help them. I'm going to tell him about the rude Dr's I've seen and that it's not easy going to a new Dr and then hearing repeatedly that you are either depressed or anxious when you know good and well you are not. I'm going to tell him that I've done what every person has asked of me, when they said I was fat, I lost 115lbs and when they said it was my medicine we came off the medicine and everything has remained the same. I am also going to tell him that he can't possibly imagine what it's like to be 28 years old and have to get your 54 year old mother to ride with you everywhere or help you pick your kids up or some days help you get the vacuum out, or drive your car for you, or take your son to school because you can't drive or pick you up off the floor when you fall or finish your words for you when they don't come out right. It must be embarrassing for my 8 year old as well and to not be able to explain anything to him is hard for me. Not sad, just hard. I'd like to know what the deal is already! This is what I'm going in there and telling him and I'm going to say if you can't help me to find out what is going on then I'm going to keep looking for someone who will!

I pray for you all and here is hoping that with God's help there is a light at the end of this tunnel no matter what it is! One day at a time!

My Story

Mar 06, 2009 - 2 comments

I'm going to attempt to write my story here so that I will have it and people can read it. I may have to come back and add things to it as I remember them and everything may not necessarily be in the right order. One big issue that I deal with now is my memory and a lot of brain fog as well as speech problems. So I'll just do this in sections if I have to and hope that it helps me as well as others!

Everything started in 2003. I had dealt with having Endometriosis for quite some time and my husband and I desperately wanted another child. We had a beautiful 2 year old son. By this time I had already had several surgeries and had been experiencing tremendous pain. My OB/GYN suggested a shot for 6 months called Lupron to help with the Endo so that possibly we could have more children. So we agreed and began in December 2003. (from here on out I will not really remember anymore dates!) Immediately I began getting very sick from the shot. We knew the shot had some side effects and I was experiencing those, but these seemed very magnified. I would be bed bound for a couple of days and then just very tired and almost flu-like. I was determined though. I kept going and in January had to be hospitalized after the shot due to pain and some trouble walking. I was put on a morphine pump for 24 hours and then released. In February I got the shot and within a few days hospitalized again and the doctor decided we needed to do a second shot in the hospital. Between January and April 2004 when I finished the last injection I had been hospitalized about 8 times, all being put on pain meds such as morphine. The end result was that I seemed to have long lasting effects (so we thought........)

I began to have a right sided tremor that was very noticeable and made it extremely hard for me to do things. I began having a lot of trouble walking and was falling constantly, bumping into things and was weak like there was no muscle tone anywhere in my legs or arms. I had to start using a cane and eventually a walker. I basically slided across the floor when I got up to go to the bathroom or to my living room from the bed which was next to impossible because my body felt heavy and weak. I was pretty much bed bound for roughly 9 months. I did get out for the doctor and on a rare occasion church and such. During this time was when the Dr had told me that the lab work was normal and they could take me behind a barn and shoot me. Now I don't remember this particular incident, but my mother was with me and she vividly remembers it and has told me about it. During this time also when I had gone back to using the cane was when another Dr told me I was really just fat and depressed. It was after that that I came home and said this is too much and no one believes that anything is wrong. I'm living in a body that is working against me. So over the next year I lost 115lbs.

I then went back to my OB/GYN and begged for another chance to have another baby. I did not need the cane anymore. I was still having a lot of symptoms and no one could tell me anything but my faith in Dr's had gone way down! I was still falling periodically, tripping some, exhausted and a few other things that I didn't know then would later be something. We attributed it to "stress" and having an active then 4 year old. I was given one try to get pregnant and had to take fertility medicine. After that it was no more chances and I was going to need more surgery. I did get pregnant and gave birth to boy/girl twins in Jan 2006. Five months later I had a hysterectomy. I should back up and say that the twins were born 5 weeks early because my liver was failing and my platelet count had bottomed out. They are healthy!

In 10 years I've had 10 surgeries! I could name them all but it would bore you. For about the last 3-4 years I have been seeing a Rheumatologist. Last year he told me that he thought I had MS, but that because it was not his area he could not diagnose me. He wanted me to be mindful of what was going on and be mindful of the symptoms. He didn't want me to drive much anymore or lift things (my kids). In the last 2-3 years I have had blurry vision, double vision, numbness and tingling in my hands, feet and face. Still have trouble with walking, tripping, balance, etc. My memory is impaired as well as my speech or ability to name or say things and often it's like I'm in a fog. My legs feel heavy at times. I am heat intolerant which has been something I've had for quite some time. The heat outside or in the shower or washing my hands will make me feel very bad and very tired! I can be tired during the day and then at night attempt to fall asleep and may but then I will sleep in spurts! I have this weird shocking sensation that goes down the back of my head/neck and out my arm and sometimes down my back that no one can explain. I have had it in my feet recently. I get weak in my arms and legs often especially if I try to walk for long distances.

I have had MRI's and they are normal. I should make it very clear that I do NOT want to be sick and I do not like the fact that my body is giving out on me at various times. I didn't wake up one morning and say "I'd like to be sick today, Amen!" I don't think that anyone ever does. I would like an answer, I want someone with enough knowledge of medicine and diseases and so on to be able to listen, not just hear me, but truly listen and then tell me what is going on. I don't think that everyone is the same, we are all different people and our bodies are different. So my MRI's are normal (not done with contrast!) and my lab work (CBC) is normal does that automatically mean that I made everything up. If so then I invite a Dr to come spend the day with me. The easiest conclusion is not depression, anxiety, crazy or I don't know! I am a person, a mother, a daughter and I deserve the same treatment that they would give to their own mother, daughter, wife, or best friend.

If you read all of this then God Bless You! I'm sure I've forgotten something and I may come back later and realize what it was and add it in. For now I will close and say that all we can do is take this one day at a time!

Another Day

Mar 05, 2009 - 1 comments

So today I had this weird shocking sensation in my toes and feet that I've never had before. I've had it in my neck and it's run down my back and arm, but today it was in my feet. My legs both went numb on me during the day and made it difficult to walk and my face went numb. Of course when it happens then I'm stumbling and look "drunk". I had to walk down the street to my mom's house to go see my Grandmother and I'm thinking do the neighbors think I'm an alcoholic? This is great you know living without knowing. Oh and not to mention that yet again for about the millionth time, I ran into the wall! The wall and I are becoming close!

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