Friday, September 16, 2011

Something new....

This week has been exhausting. I knew it would be when I reviewed the calendar last weekend. It was full of day to day stuff, doctors appointments, the children's sports, and youth group. For the average gal this would just be tiring, but I am not average. I suffer from a handful of illnesses that make things much more difficult. On top of being physically busy, my mind has been pre-occupied with health issues.

Last week I picked up a copy of my medical records from the rheumatologist that I fired. I have an appointment with  a new doctor in December (of course it takes months and months to get in with a specialist, sigh). The first thing I did when I got home was read my records. There weren't many pages to it since I had only seen this particular doctor a few times. Nothing was out of the ordinary, that is until I got to the very last page. An MRI report that I had done last August. Last, as in the year 2010. That is 13 months ago. An MRI I had done of my brain. Incidentally, that same day I also had an MRI of my spine that I was unable to complete due to an overwhelming feeling of suffocating. Anywho, this particular report of my Brain showed abnormalities. Hmm, that is strange since my neurosurgeon never mentioned anything. I clearly remember last year when my neurosurgeon called with the results of this MRI. He left a voice mail stating that I had a brain, (it is always funny when surgeons try to be funny!). There was some evidence of some swelling. Let me back up just a moment and tell you the reason I had this particular MRI.  It was because I had a c5-c6 fusion at the end of June and a few days prior to the MRI I smacked my head on the car jam, resulting in a concussion.  Because of the brand new hardware in my neck, the Massive headache smacking my head caused and some new tingling in my arms...the MRI was ordered. My neurosurgeon suggested I rest lots and asked me to see my neurologist.

Neither of these experts ever mentioned that my MRI CLEARLY showed findings of mild Chiari Malformaion I. In a nutshell, Chiari malformation (kee-AHR-ee mal-for-MAY-shun) is a condition in which brain tissue protrudes into your spinal canal. It occurs when part of your skull is abnormally small or misshapen, pressing on your brain and forcing it downward. Chiari malformation is uncommon, but improved imaging tests have led to more frequent diagnoses. The adult form, called Chiari malformation type I, develops as the skull and brain are growing. As a result, signs and symptoms may not occur until late childhood or adulthood.

Um what? How in the world did that pass by my doctors? Well let me tell you. I called my NS as soon as I could breathe again and his reply, through his assistant, was that because it said mild he was unconcerned. And also, because it was found on a brain MRI and not a cervical MRI. Hmm.... I have several issues with this response. From the research I have done, and oh boy have I done my research, showing Chiari on a MRI is so important! With these findings and with the many symptoms I have this needed to be addressed!. Chiari does not go away, it progresses and there is NO CURE. The doctor should have taken into account that I can check of a majority of the symptoms. The doctor should have at least mentioned it to me and told me to be aware of this situation and come in if any new symptoms arise. The doctor should have at least told me to come in for another MRI in a year or two. But no. He choose to ignore these findings. Period. He took away my right to be knowledgeable about MY BODY. The doctor should have reread my MRI of my spine, from May of 2010, where it is noted that I have low lying cerebellar tonsils.

What am I going to do with all this information?

With the knowledge of the mild Chiari Malformation I: I will continue to obsess, err education myself. Continue to be aware of my headaches, numbness and tingling of my face, pressure in my brain and neck, balance issues and a myriad of other symptoms. I will seek the expert opinions of other professionals, maybe someone who has dealt with this condition a bit more than my current doctor.

With the knowledge that my doctor discarded something so important: This one I will have to think about. I liked this doctor. For the most part. I remember feeling "dismissed" after my fusion. That the headaches and other issues I had were "in my head". sigh

This was just one small portion of my busy medical week. I also had my first Physical Training appointment for my right knee. I met my new Primary Care Physician this week. I liked her! I had a follow-up appointment with my hand surgeon. And I scheduled my 7th surgery in less then 3 years.


I have value

Starting a new blog is very intimidating for me. I have another blog, that I used to journal on, but I took a long break and found it difficult to return to that particular place. That time in our life was difficult. And moving forward sometimes requires a fresh start. But looking at the blank box and actually putting down letters to form words is scary!

In my personal life I feel judged. Judged by family, acquaintances, face book friends, fellow church members....everyone. But I need to learn that more then likely the majority of those people I worried about, don't even think of me. I am just someone they know, a friend in passing. It is amazing how much credit we give to the people around us, when in reality we need to only be worried about ourselves and God. What does HE think of my actions, my thoughts, my choices? And how do those actions, thoughts and choices effect ME and my household?

I long to share what I deal with on a day to day basis. But, when I start to write I feel like I am complaining. But you know what? I am not a complainer by nature so why would I start now? But life is not rosy. It is gray. Full of medical drama and family drama. Raising 3 teenagers is bound to be dramatic. I also feel that I should have a theme, but that isn't happening. My mind is in too many places to settle on one topic! Man I have "over thought" this space! lol. But I am determined to do this. To journal my life. To mark the passing of time. And if I am judged, then so be it. I am worthy of having my thoughts "spoken aloud". I have value.

My journey begins. Whatever road my future holds, it will be shared.

Wednesday, September 14, 2011

Choose Joy!

Today I read a tweet on twitter, asking for prayers for a special lady named Sara . I followed the link to her blog to read a little about her. I was deeply saddened to read that "Sara is getting ready to head home to Him." 

I have always found it to be such a privilege to pray for others. And follow many many blogs where I get to do just that. I know that in my own life, when I hear that someone is praying for me, it just touches me. 

This afternoon I immediately searched around Sara's blog to find out her story and was astonished to read that she has one of the things I have been diagnosed with, Ankylosing Spondylitis. Upon further investigation I realized she is my age. I have spent a few hours today reading a few of her posts from the past three years. She has had it rough. Housebound for many years, unable to do much more then rest. Yet, post after post she is full of joy and thanksgiving for what she is able to do. And for the people in her life. I look forward to returning to her blog and reading many more of her stories. How she has Chosen Joy. I pray that her transition into God's arms are without pain. And those that love her are comforted by the knowledge of her future. And I pray that like her, I will Choose Joy, even on the hardest of hard days.