Tuesday, July 09, 2013

I WISH I WAS "NORMAL" AGAIN...

As of late I have not been able to enjoy doing anything creative. I don't believe that I lost my mojo at all; I think the problem is that lately with my health I can't enjoy much of what I do. My medications make me tired and harder for me to think at times. I spend a lot of time gaming and playing with ideas. I start one thing and move on to the next. I don't seem to have any discipline with what I start. And that in turn is causing heavy amounts of frustration.

To settle the curiosity if there is in fact any; I have a condition called transverse myelitis. And to bring awareness to it here is some information in it that I got from this website...


Transverse myelitis is a neurological disorder caused by inflammation across both sides of one level, or segment, of the spinal cord. The term myelitis refers to inflammation of the spinal cord; transverse simply describes the position of the inflammation, that is, across the width of the spinal cord. Attacks of inflammation can damage or destroy myelin, the fatty insulating substance that covers nerve cell fibers. This damage causes nervous system scars that interrupt communications between the nerves in the spinal cord and the rest of the body.
Symptoms of transverse myelitis include a loss of spinal cord function over several hours to several weeks. What usually begins as a sudden onset of lower back pain, muscle weakness, or abnormal sensations in the toes and feet can rapidly progress to more severe symptoms, including paralysis, urinary retention, and loss of bowel control. Although some patients recover from transverse myelitis with minor or no residual problems, others suffer permanent impairments that affect their ability to perform ordinary tasks of daily living. Most patients will have only one episode of transverse myelitis; a small percentage may have a recurrence.
The segment of the spinal cord at which the damage occurs determines which parts of the body are affected. Nerves in the cervical (neck) region control signals to the neck, arms, hands, and muscles of breathing (the diaphragm). Nerves in the thoracic (upper back) region relay signals to the torso and some parts of the arms. Nerves at the lumbar (mid-back) level control signals to the hips and legs. Finally, sacral nerves, located within the lowest segment of the spinal cord, relay signals to the groin, toes, and some parts of the legs. Damage at one segment will affect function at that segment and segments below it. In patients with transverse myelitis, demyelination usually occurs at the thoracic level, causing problems with leg movement and bowel and bladder control, which require signals from the lower segments of the spinal cord.


This condition has truly been a major life changing experience. I have a roller coaster of emotions and have a lot of pain. Although, I am thankful that I am still able to walk on my own and have body control. Originally I was diagnosed with multiple sclerosis or the possibility of devics disease. When I left the hospital believing that I had MS I was torn. I held myself together to stay strong for my family but deep inside I was truly a mess. It was a relief to find out that I did not have MS. My neurologist decided to get a second opinion before proceeding with treatment. Had they treated me for MS and that was not really my condition I could have sued them, but my neurologist was too concerned with damaging other parts of my body with the treatment. The uncertainty of if I will get better has truly been heavy on me and my entire well being. The amounts of medication that still lingers in my system make me a different person. I find myself distancing myself from those who love me and want to help.

I would much rather not go into too much detail on how it started because it was a disaster with the process to get to the point I am at now. Test after test, the fear behind what it "might" be. The bills that come with all of it and being out of work because I cannot perform my job duties. It has truly been a hard thing to handle. And as many times as people have reminded me how strong I am; this situation has truly tested my strength, and I don't know that I am that strong. There will come a day when I might be able to look back and know that I defeated my condition and I try to believe that I will, but when your days are different due to your health it can be discouraging. When you have to fear falling and walking with a cane while people stare it is even more discouraging. I can barely finish household chores at times and shopping alone is truly out of the question. When an independent person loses their independence their psyche takes a different course and you lose sight of who you once were.

I just have to remind myself that I am truly blessed to have such an amazing support team ready to help me endure this should I get worse or celebrate with me should I get better. I tell myself everyday that I could be in worse condition so I should be thankful. I have met people in wheel chairs due to this condition. Read about people who have urinary retention and loss of bowel control. When I compare myself to them I realize that my state of this condition is truly mediocre but I do suffer nonetheless. Popping pills daily, injections in my back every couple weeks, and constant tests for different reasons can truly take a toll on you. There are dark days for me when I don't want to do anything, deal with anybody and have pity parties. I believe I am allowed that much. Yes, I know I can be the hope that someone else with my condition has, but sometimes someone else needs to be that hope for me. In due time I may understand why this has happen more, but I can tell you that I am truly NOT IN CONTROL! And I believe that is the major lesson I need to learn. To have no control means to need. And I for one am NOT a needy person, but this has taught me just how much I really need to trust people with my life in their hands. And so far it has been a great lesson to experience for me and I hope that one day I can return all the support I got to all those who have supported me.


TFR!
1L

No comments: