Before you read this ....it has some really personal stuff, stuff I was not going to put on the internet but I feel like it is a very big part of my frustrations and ...you don't have to read this unless you want to.
I have had a really bad cold for awhile...thankfully it is getting better.
Colds or any kind of sickness really drains me.
I had an appointment to see the Dystonia doctor this week and I was far more nervous than usual...sometimes I am not nervous at all , I just go see a doctor and don't really think much about it.
My parents and I left the day before and stayed with some friends because the appointment was the next morning and we live a ways away. This was a very good thing...because I had a lot of laughs that evening and being with friends always helps.
Anyway...the appointment was o.k. , The Dr. wants me to have a genetic test to see if I have one of the two most common Dystonia genes....why?
Because this would mean if I had one of the genes I could have brain surgery.
If I don't then he would just treat the symptoms ...botox, drugs, that sort of stuff...but botox cannot fix my back anyway. ( I am pretty crooked if you don't know)
Yes I got worse. I get to stop the levadopa and try some other drug.
Drugs..Drugs...Drugs........I guess I could always "Just Say No!"
Well I am going to try the new drug...if it helps it would be good, I am just worried about the side effects.
Anyway....I have been having a ridiculous time keeping my weight on, yes it has pretty much always been a problem.
Part of the Dr.s plan was encourage eating....I eat! I am so frustrated....I have even had doctors say they didn't believe me when I told them everything I ate the day before.
The reason I was so nervous....some of the stuff in my records is not the truth and It bothers me very much.
I have had a doctor say I was self- injurious after I had one of my seizure-like events and fell through a glass coffee table and had to get stitches....he said since my seizures were non- epileptic I did it on purpose. I most certainly did not! I am out when they happen...I don't plan them it just happens.
The Dystonia Dr. said the seizure -like things are something we don't understand....I don't understand it either. I am glad he said that and didn't just say I was crazy.
But that isn't the only thing that bothers me..... there is something from the University of Maryland that says I did chest binding! ........why do I even care?
Well somethings about me are a bit different than many people my age...I don't have a period (but I have breasts...I am small but everything about me is.)...yes I even had a doctor say I made myself that way also! I don't even know how a person could do that.
I did not make myself this way...God did.
I guess I was worried the Dr.would not give me a chance , that he would just say I was crazy and that would be that.
I always wanted to be a Mommy when I grew up....I guess that is why these things are especially painful to me.
Also.....I don't want to hurt myself...I just fall down and stuff happens.
I don't know why God allowed all this stuff...I just don't understand.
Truman Capote said something like he did not care what people said about him as long as it wasn't true.
Well....I am not him, I care and it is exceedingly upsetting to me.
The only way I calm myself down is I keep telling myself over and over that God knows what it true, God is stronger than man even if they have a white coat and God has a plan.
The truth is out there.
Frustrations...Frustrations.....
You hang in there. Doctors can be very annoying! I'm not saying all doctors are bad. There are some that truly care about their patients and save lives. But to many doctors, their patients are just another number and it's a business. Have you ever considered trying a different doctor? I can say from experience it means sooooo much when you have a upbeat, encouraging doctor you feel comfortable with on a personal level.
ReplyDeleteDoctors go by statistics and past experience only. My mom has stage 4 cancer. We like our doctors and trust their advice, but we are not going only by their statistics or any books. Instead we are handing it over to God and expecting a total healing! What may look impossible for a doctor to fix is simple to God. :)
Seizures suck and are scary because they are so unpredictable. But you are definitely not crazy! Millions have seizures. Remember God always has a plan. He made you that way for a reason and for the good even though it might not seem that way right now. If you can't have a child, someday you can adopt. Perhaps God doesn't want you to have a child because he feels someday another person's child needs you more as a mother? Stress, frustration, and worry come from the devil. Let all your burdens go into God's hands and he will guide and comfort you. God is so much bigger than any doctor or statistic!! You are in our prayers as always. :)
This doctor did not say I was crazy thankfully,(I like the fellow) I was fearful about what he would say/think after reading all my records and what others had written. Thank you so much for your prayers.
DeleteAny doctor who sees you and thinks you are binding your chest is an idiot. The (vast) majority of females who bind their chests are those who want to change sex or who have adopted a "butch" persona. This is typical of the outlandish theories doctors will entertain, when they cannot put their finger on what is wrong with a patient. In this case you have seizures which he can't identify the cause of, and delayed puberty, which may well be a straightforward endocrinological issue, but he assumes they must be connected. (I've also heard of young women being held in hospital for eating disorders they didn't have, when in fact they had a bowel disease.)
ReplyDeleteIt may actually be worth finding out why you haven't started your periods; they may be able to tell you if you can or can't have children or if it has any link to your seizures whatever. My sister had to have medication to cause hers to start, and she never developed noticeable breasts (she had surgery in the end) but she did conceive a child who is now 4 years old and healthy. Your doctor should refer you to an endocrinologist if you tell him or her that you haven't started menstruating at your age. It may have an effect on your bones as you age -- hormones (male or female) are vital to maintaining bone density in an adult.
I was seen by an endocrinologist after being on horrormones for six months without the proper result. He thought the cause was most likely due to the fact I have been very underweight my entire life...then he said perhaps I ought to see a gastroenterologist which I had done. I continued to see the endocrinologist until he died.... I also saw a nurse who specialized in that area...she said she really did not know what to do with me ...she never had someone who would not respond to horrormones . I am a very big puzzle I suppose. I also was checked out at the Cleveland Clinic....which led to genetic testing which came back abnormal....but they do not know the consequences of it.
DeleteThe fact that you sister had a child is very encouraging to me ...and that the child is healthy.
The thing is... honestly I do not think that I could care for a child, but I hope that someday, maybe, I could.