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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!

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by deborah0904, Mar 06, 2009
Bless your heart!  I am beginning to think there are people in all of our lives who think we get joy out of having these symptoms and being sick.  I have been struggling for over 20 years to find out why I have very strange things happening to me.  It's not fun not being able to do normal, everyday things.  Don't let other people define who you are and don't let them make you think these symptoms are not real.  Sometimes, I think people mean well but they say really stupid things. They want to make us feel better but they say something stupid and they make us feel worse.  Silence is sometimes golden!

Keep looking for the right Dr. who can find answers to your health problem.  I am making it a point to pray for everyone on this website.  I know the struggle I've gone through to find answers and I'm still trying to find answers.  I've been diagnosed with MS but something else serious is also wrong with me.  They just don't know what.  

God is the source of my strength and encouragement and I couldn't go through this without Him.  I pray that you find a Dr. who is knowledgeable and can help you.  

God Bless you!

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by jessa1981, Mar 06, 2009
Reading your story helps me, it helps me to know that there are other women who wake up and feel the same way.I wish u well,one day at a time right..If u need to vent or talk i'll be on this website (somewhere?!  just joined!! ) good luck to you! jessa

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