My plan was that I would write my next blog entry after my surgery, but as usual, things did not go as I expected.
First, my son came down with some kind of illness with a rash over the weekend. We took him for a strep test and it came up negative. By Monday, he was feeling better, but my oldest daughter was now sick. He had an appointment to talk to the doctor on Monday, so the whole family went with him.
When we arrived, our regular doctor had 2 med students with him. Of course they were curious about the girls. The nice thing was, the doctor asked permission from the girls for them to examine them. My youngest was uncharacteristically cooperative. They both felt empowered to make a decision instead of having to deal with the doctors.
Anyway, both kids probably have 5ths disease. This would be okay, but we had a friend over Saturday and she is in her 3rd trimester. Of course! This also puts me in jeopardy as well as all the plans that my husband has made for the children. We are getting better about punting, it really does not upset us as much now.
Only one doctor appointment for us today and it went well. However, my mom went to see the spine surgeon. She has continued to have pain since her back surgery last year. She has had trouble sleeping, uncontrolled sweating and bladder infections recently.
She had gone to her regular doctor, the geneticist, the sleep doctor and others. They thought she was having a thyroid problem. It turns out that she has A BROKEN BACK!
She fell a few weeks after coming home from her month stay at the hospital following her other surgery. She had called the surgeon's office and was assured that nothing could have happened. Well, we now know why my daughters are so tough!
In a way, this is a good thing, if a broken back could ever be good. The surgeon thinks this is the cause of the majority of her problems. So, she could have surgery very soon and I am hopeful that she will get some relief.
For years, we did not have answers and we just kept going. Now we have answers and we don't like them, but they are answers. I wonder which is better. Sometimes I would like to take my family and hide and not go to the doctor appointments, but I also remember how badly I felt all my life and how I just kept going, despite the pain. I also had in the back of my head that something was wrong with me in the head. (Of course, I did find out later that my head was not on right, but only I can make that joke!)
I was very upset last week and down on myself about when to go to the doctor and when to stay home. I have decided that I was putting way too much pressure on myself. If the doctors cannot agree and are not sure what to do, what makes me think that I can do what they cannot. I don't have a medical degree and I am on pain meds and in extreme pain most of the time. What makes me think that I should be right about these decisions?
Anyway, I gave myself permission to not have the answers. It is very freeing and took a weight off my shoulders. I am not going to be right and that is okay. For so long, doctors did not believe me or listen. Now with EDS and a brain lesion, hypertension, chronic pain, lordosis of the C spine and so on, they are finally offering relief and I am glad.
I look forward to finally having something done about my pain. I do not have any illusions that it will fix everything, but it is something.
Please pray for me and my family.
No comments:
Post a Comment