My Platform NMO Rare Disease

Tuesday, April 30, 2013

cont. Exacerbation

In the meantime my symptoms worsen, some gradual, however most developed rather quickly. I recall having a crazy fall resulting in a broken foot. I couldn’t believe it, there was nothing to cause a fall (I understand it to be a balance issue now) yet the fall that left me walking around for more than eight weeks in a neon pink cast(my only other choice at the time was midnight black what a large assortment huh)along with other weird happenings was a mystery. We sat down with doctors again and again to come up with answers that would help us with a plan to no avail. As time went on I got to the point in which my legs began to feel like tree logs attached to my hips I convinced myself that I was tired or that I was having a flare up from a previous back injury (I’d enjoyed my birthday weekend with my daughters) in Nashville, TN appreciating Nae’s performance onstage in a musical. Nevertheless reality sunk in after doing all the things I’d grown accustomed to doing to relieve myself. I managed to continue with my routine as if things would resolve because I was ignoring what was happening, they didn’t. By that Wednesday, I ended up in my PCP’s office having extreme difficulty walking; he started steroid injections for the next five days. Things worsened, so I called my PCP’s office this time he said to go straight to the ER. He said he would call my Neurologist and have him see me. My Neurologist happened to be out of town, so the Neurologist on call saw me. He consulted with my PCP after seeing me, and told him that I was in a serious crisis, and needed to be moved to a larger hospital capable of treating me. It took several hours get things arranged, the Lord saw fit to encourage me, with visits, prayers, calls, and texts (I had no clue the hardship ahead) but I had a peace, that everything would be alright. During the time it took to make arrangements weakness now went from my waist down, not only was I unable to walk, but I had no trunk control now. As the two medics discussed the best way to get me from the hospital bed to the transport bed, I could see my husband out of the corner of my eyes shaking his head in disbelieve being console by a minister, and deacon. I motioned for him with my head to come where I was (I was unable to use my fingers to point). We made pathetic attempts to assure each other that everything would be alright, but the fact of the matter was no one knew what to expect. The medics decided to put me in a sheet and lift me onto the ambulance bed. We yelled goodbyes and I love you to each other as the medics rolled me out to the ambulance to be transported four hours away. It was so strange that I was concerned more about my family finding out what was happening with me, and the fact I was having to leave my then my eight year old and my husband than I was about my condition. That night the grace of God was so evident, before we took off the driver came over, and got right into my face and he said “I am going to be very careful with you we are in no hurry to get to the hospital. They have been notified and they are getting your bed ready as we travel, you lay back relax let me do all your thinking.” In the back of the ambulance more of the same grace flowed through the attending medic, he told me that he had preliminary paperwork to complete and then he wanted to know all about what was going on with me. He admitted that he had never heard of NMO but he looked it up on their way to pick me up, he wanted to know more. After he finished his paperwork we talked the remaining time about more than NMO, it was very clear that God had me on a divine assignment. The medic shared some very recent painful events that he was going through, I was urged to speak a word of hope to him the grace of God again was undeniably present. We prayed for each other, and he handed me off to the nurses awaiting our arrival at the hospital. The hospital was well prepared for me so processing went very quick. Before I could get settled into my room, one of the things I wanted to prevent happening, happened Rida (my sister) appeared from out of nowhere. As I was fusing with Rida about driving five hours away my older daughter walk in after working she drove five hours, shortly followed by my middle daughter. They were just as upset with me as I was with them because even though I’d talked to them I did not let them know what was going on. The doctor finally saw me, and the diagnosis was “exacerbation” he told us the plan for treatment. Somewhat confused we decided to settle down, get sleep and regroup the next day. Continued IV steroids, plasmapheresis, MRI and therapy was the plan over the next few weeks and we would have to wait to see the outcome. The MRI confirmed the NMO diagnosis the fact that there were lesions in my spine, and brain along with my symptoms made the comformation. The Neurologists were optimistic, but made us aware that the reality was that NMO is a rare, nasty, incurable disease. After a few days we all decided that it was best for everyone to go back to their world that I would be fine. Not long after everyone left the treatment was completed and I moved on to rehab, were I begin recovering well. I saw my eight year old and husband every weekend. I received lots of mail. Once I the mail carrier asked the nurses who I was(some kind of celebrity) because I had so much mail. After three months I was released to home healthcare. I was assigned a nurse, physical therapist, and occupational therapist. Before leaving the hospital I was assured that I would recover, but it would be a long process, and not to get discouraged. Everything I was told came true. It took some time but I slowly, but surely got better. However before I could fully recover by mid-July I’d had another exacerbation, this one more powerful than the first (I’ll pick up here next time).


Post a Comment