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).
Friday, April 5, 2013

God keeps His promises

For no matter how many promises God has made, they are “Yes” in Christ. And so through Him the “Amen” is spoken by us to the glory of God.
(2 Cor. 1:20) NIV.
In a world of uncertainty, our trust is in a faithful God who will always keep His promises.
I continue to trust the promise of God that I am healed.  Recovery from a transplant is not as easy as I thought it would be.  I am thankful that I have been able to put one foot in front of the other day by day I am going to recover.  I am very tired and have been feeling cold this past week. The transplant team assures me that my body is still making adjustments, and it is still early.  I seem to feel better later in the day than when I first get up.  I try hard to stay busy during the day, but am still having to take a nap at some time during the day.  I am happy to answer phone calls, emails, and other means of communication.
I thought it would be a good idea to go back and detail all that has happened leading up to the transplant. According to my medical records I was seen at Boozmanhauf eye clinic for an unexplained optic neuritis in late 2002.  After many examinations locally and Little Rock, it was determined that I needed IV steroids for the inflammation in my eye.  I couldn’t see in my right eye when I went to the doctor to begin with, and that did not change even after the hospital stay.  A week later I was examined by a Neurologist who diagnosed me with MS, scheduled me for a series of test, but said that the treatment for MS is to treat the symptoms as they come up.  At that particular time the only problem I was having was the optic neuritis.  MRI, lumbar puncture, nerve conduction studies all pointed towards MS.  There is not a specific test to confirm MS all other diseases are ruled out and then MS becomes the diagnosis, based on the symptoms.  By this time I had begun having some weird symptoms for example my feet were numb, I was unable to grip anything with my hands, and I felt like there was a band around my waist all the time, it was very uncomfortable.  Another Neurologist saw me and said he was aware of a specific test for NMO, that he thought I should have because of the symptoms, and because more symptoms were coming up even with the medication he’d prescribed for me.  The test was positive for Neuromylitis Optica, (NMO) aka Devics Disease, the doctor told me that this was a very rare disease and that he could not tell me a prognosis, that we would wait to see what course the disease would take.
I did some research and found very little information on NMO.  I remember thinking to myself there is no way I am the only one with this disease, I need to find somebody else who has NMO to talk to.  I prayed and asked the Lord to lead and guide me to help myself, I really felt like the doctor did what he thought he could do and the disease would run its course.  Every time a different symptom came up I found myself really searching for help and answers.  The Mayo Clinic had little information, about treatments, however they did offer suggestions once the disease progress to a certain point.  I prayed and asked God again to direct me because I did not want to get to the point that the Mayo Clinic described to me.  For, a couple of years things seemed to stay the quiet, and God gave me strength to manage the symptoms I had been having.  (I will pick up here next time).
Monday, April 1, 2013

Three Weeks

I’ve been home now from Chicago for three weeks now, after undergoing a stem cell transplant on February 27, a month ago.  I will admit that this is a process that is going to take time to get a routine rhythm going.  My family has covered me as long as they could and now with the help of the Lord I am doing it.  God bless Rida, Kitty, and Mother who put their lives on hold to be sure I could live the best life possible during this transition.  Joshua and Dee unfortunately don’t get off that easy they still have to deal with me daily, they don’t seem to mind that much as long as I am home. 

So much emphasis on infection and safety until there is very little time for me to blog.  I felt like I needed to catch things up so that I don’t feel so overwhelmed when I have the opportunity to blog.  As far as infection goes my orders are to stay away from clinics, hospitals, day care centers, and any other public places where people could be sick.  I cannot be around anyone that is aware that they are ill, or has been ill.  If out in public I wear gloves for my protection, I am not allowed to hug/kiss until my immune system is built up again, so hard because I am a people person, and I work hard at loving people and hugs are a part of my love language (on hold for a little).  I am allowed to go out in public now, however not at peak times when there may be large crowds (Easter service yesterday an exception). I have been encouraged to slowly get back to what a normal routine is for me.  The safety issue is as serious as the infection issue is because of the fragile, weakened state the chemotherapy and the transplant left my body in.  It is a welcomed everyday chore to get up and get myself ready for the day whatever that day holds.  I have found that every day is different than the one before, and I have to take each day for what it is worth. The first week I was home it was all I could do was get used to being home again it seemed like everything was so foreign, my bed was the first wake-up call, I was used to using the rails on the hospital beds to turn from side to side, no rails on my bed here at home slowly, I’ve made some adjustments and am doing fine at home now.  The second week I spent figuring out medication, and reporting my B/P, and P to my doctors who were trying to regulate the medications. This past week, I’ve noticed I get tired very easily, so I take frequent rest breaks.  What is good about the breaks is that I recover quickly.  I have pinpointed the areas that I need work and what I’ve found is my overall body is weak and so I am starting with strengthening my core.  I have been evaluated for o/t and p/t but I know that there is only so much they can do the rest of how well I recover will be determined by what I do.

My overall goal remains the same, to get back on my feet, bring awareness about this disease, and finally set up a foundation in which anyone that needs a particular treatment, and does not have the means there will be means to help them. While going through my process I also hope that my experience will help another person dealing with Devic’s Disease experience a little easier.  I hope to encourage, and inspire others to remain hopeful and to keep searching until there is a cure.

The only way the FDA will approved this and other treatments for Neuromylitis Optica (NMO) aka Devics Disease is if those with the disease are allowed to take part in the research efforts.