Okay, so I know I have been neglecting my obligations to this blog. Life happens and sometimes we think we know what we need to know in a very short period of time. I thought I knew what I was supposed to learn, I was very far from it. I started writing to help myself get all the thoughts out of my head, and put in a format to help me, and those who read, realize what blessings I have received and what weaknesses need to be worked on. It seems that I still have much to learn, and life is not finished with me yet. Nor I with life...
After the trip to Vegas to see my sister off, my family and I returned home in Coeur D' Alene. We were in a mad dash to get everything we needed done before school started. This is the first year that we will have all six of our kids in school at the same time. Cherie was hired by Lifetouch taking photos of preschool age children. She is doing a wonderful job and is getting high praise from her trainer and from the school directors. Her job requires her to travel a couple times a month until they hire another photographer for the areas that she travels to. The kids are doing great in school, most of them like school and look forward to the next day to start so that they can see their friends again.
We also received the results of the biopsy... Do you want to know what they said? I am sure you do! Officially I have Congenital Fiber Type Disproportion or CFTD. What is CFTD you may ask well that my friends is the million dollar question. I have read and reread the information my doctor gave me and anything I could find on the matter. I don't think this is what ails me, lets see if you agree. The following has been taken from WebMd.com. I have marked the parts of this diagnosis that have raised concern for me.
"Congenital fiber type disproportion (CFTD) is a rare genetic muscle
disease that is usually apparent at birth (congenital myopathy). It
belongs to a group of muscle conditions called the congenital myopathies
that tend to affect people in a similar pattern. Major symptoms may
include loss of muscle tone (hypotonia) and generalized muscle weakness.
Delays in motor development are common and people with more marked
muscle weakness also have abnormal side-to-side curvature of the spine (scoliosis), dislocated hips, and the permanent fixation of certain joints in a flexed position (contractures), particularly at the ankle. The diagnosis of congenital fiber type disproportion is controversial.
The changes to muscle tissue that characterize the disorder can also
occur in association with many other disorders or conditions including
other congenital muscle disorders, myotonic dystrophy nerve disorders
(such as spinal muscular atrophy), metabolic conditions, and a variety
of brain
malformations such as cerebellar hypoplasia. These conditions should be
considered and excluded before a diagnosis of CFTD is made. Most
patients with CFTD have no other affected relatives (sporadic). Some
cases are inherited as an autosomal recessive or dominant trait. In one
family, CFTD was inherited as an X-linked recessive trait."
So in a nut shell, I have a disorder that also has all of its symptoms in common with some pretty severe diseases. I was tested for the common Muscular Dystrophy strains, and that came up negative, so that is a plus! On the down side I was not tested or the doctor did not rule out any of the other disorders that share the same symptoms. I also find it concerning that I have very obviously lost all of my pectoral muscles. The diagnosis says there is weakness, or loss of muscle tone but not the compete loss of muscle groups. Hopefully I am not reading into this diagnosis. I genuinely feel that I have been misdiagnosed, or there is just not enough research or information on CFTD to match it to my condition.
After the diagnosis I slumped into a depression. I really wanted answers, and treatment so that I could resume a somewhat normal life. I am having a very hard time finding value in myself. I focused so much on the diagnosis as the beginning of the end of this chapter, but in reality I am in the start of another chapter, and the end is nowhere in sight. I cannot hold a normal job. I have to sit and stand at will to alleviate the pain in my back and neck and shoulders. I cannot lift anything over about 5 pounds without difficulty and pain. Easy chores like dishes, laundry, cleaning a bathroom are very taxing and I need a considerable amount of recovery time to complete these tasks. If I do not have any pain management then it is even longer to recover. I feel like I am a leech, and I am sucking the life blood out of my family. I never thought that I would be here. I do not have it as bad as some others. I have a lot to be thankful for, and I know it will get better. I don't know how or when, but it will get better. I just have to find out what to do with myself now. I have no idea of what I want to be now, I don't know what interest me anymore, or how to reinvent myself with the accommodations that I need.
