Hiya, Teammates! I know youve all been eagerly waiting by your phones/computers/tablets/etc. for my update. ;) This past week has been a bit crazy and Ive had trouble taking the time to sit and organize my thoughts coherently into a real update. Since I have homework due tonight, I figure this will be a good warm-up for my poor brain, lol. So, as you all know, Monday, I saw a new neurosurgeon who ordered a flexion-extension X-Ray. The test itself caused me considerable pain and I really struggled for the next 48+ hours with an extraordinary amount of neck and head pain. Tuesday, I put in two emails and a phone call to the NSs office letting them know how much pain I was in and asking if there was anything they could do. Unfortunately, I was told that, if it was still causing me pain in 5-7 days, that they would order physical therapy. Probably needless to say, I was devastated. That information did me absolutely no good to help deal with the pain in the meantime and I was in agony. Tuesday night, I emailed my primary care physicians office. I explained the situation to him and asked if there was anything I could do to help with the pain. He had a couple of suggestions for things I could do at home, and also called in a short dose of steroids to help get me through the worst part. 12 hours after my first dose, I was already beginning to feel some relief from the neck pain, and I only needed to take 3 of the 5 days worth of meds he called in. Wednesday morning, I started taking the steroids. Wednesday was still quite a painful day for me and I really struggled again. Thursday morning, I was beginning to feel MUCH more like myself, except that I woke up with an excruciating high-pressure headache. Because of my Chiari malformation, my cerebrospinal fluid does not flow properly. I know this is an unfamiliar term for many of you, so I will try to explain it the best I can. Our brains and spinal cords are bathed in a vital, nutrient-filled fluid called cerebrospinal fluid (CSF), which cushions these body parts that are needed for us to live. Because the Chiari causes a blockage at the base of my skull, the CSF is not able to freely flow through these spaces as it should (think of it as similar to a blockage in the heart, which prevents the blood from flowing properly). When too much of this CSF is trapped in the brain spaces and unable to flow into the spinal column, it creates an enormous amount of pressure on the head. Many people need shunts to help drain fluid, while others need surgery to remove bone and allow their brains to expand unhindered. Mine is not quite that severe, and I simply face high-pressure headaches from time to time. Unfortunately, when I experience these, lying down makes the pain much, much worse. Shortly after I woke Thursday, my mom came over and helped me shower and wash my hair. Between the neck pain and headache, washing my hair was something I was unable to do on my own and, my mom being the wonderful woman she is, understood how much I needed that to feel better and came to assist. After I showered, we packed a bag and I went to stay at her house that evening. We had several trick-or-treaters, though I wasnt feeling well enough to participate in handing out candy. I sat in a recliner and did my best not to focus on the awful headache. We had a pretty low-key evening, the two of us, plus Moms bf (another incredible member of my support system), we stayed in and watched a movie. I struggled a lot to sleep Thursday night since I could not lie down without adding considerably to my pain. It was a rough night but I awoke Friday feeling a bit better than I had the day before. I took my third (and final) dose of steroids that morning and prepared for the day ahead. Mom and her bf were planning to have photos taken and Mom wanted some of the two of us as well. Therefore, Friday morning was spent on my hair and makeup (thank goodness I was feeling better!). We went to the park to take the photos, where I got quite a bit of exercise in my chair and did pretty well. Friday afternoon, we went and had a FABULOUS lunch at this gourmet taco restaurant. Later that evening, Mom and I watched the latest documentary on the West Memphis Three, West of Memphis. It was quite interesting for me, since Im from that area of the country and, at the time the murders were committed, I was only a year older than the victims. We stayed in and watched the movie Friday night, another low-key evening, and I ended up staying over another night. Saturday, I woke up feeling much more like my usual self, though exhausted. Mom and I had breakfast, watched a little television, then Mom turned to homework. Although I needed to do the same, I could not get my brain to focus well enough to do so. Instead, I decided to try for a nap. Although I was exhausted and I tried my best to sleep for about three hours, I only actually napped for maybe an hour. By the time Mom brought me home last night, I was so tired I couldnt think straight (which is a problem even when Im fully-rested). The weather weve been having all week has contributed not only to pressure-headaches, but also to an extreme amount of joint pain and memory and concentration difficulties. My roommate and I talked for a while to catch up on events that occurred while I was gone, then I decided it was time to go lie down. I think I slept about 13 hours last night, which was MUCH needed! Im feeling a bit more coherent today, though Im still struggling with pain related to the weather and the lack of sleep. Im also still having a lot of trouble with my back, something that has not been an issue for me until the past couple of months. Heres one of the interesting parts about having chronic illness that many healthy people dont consider: worry. Each time I have a new ache or pain, I have to be acutely aware of it. Back pain that persists in the same place with no apparent cause, for many, might simply be the product of aging or sleeping in an awkward position. However, for me, I have to be aware that the pain could mean Ive developed a syrinx (a fluid-filled cavity in the spinal cord), which can be life-threatening. It may VERY WELL be a product of aging or poor posture, etc., however, it could mean something much more serious. While this is true for everyone, I cant afford to simply write off a new symptom as nothing. I have to be aware of its location, any symptoms that seem to accompany the pain, anything that seems to make it worse or better, etc., etc. Then, I have to decide whether Im enough worried about it to have my doctors investigate it. When a person has SO MANY issues that his or her doctors are investigating, the person has to prioritize which get more attention and which can wait. And, as most of us well know, waiting often leads to more worry... Also yesterday, the Chiari community was devastated to discover that we lost yet ANOTHER member in October. We know of at least four people who lost their battles with Chiari last month. Those are people who are connected to our online communities, people who had been diagnosed with Chiari, people who were acutely aware of each new pain or other symptom. For each of those members, we can assume we are losing more who have not been diagnosed, have been diagnosed but are not part of our communities, etc. Chiari (and complications related to Chiari) are costing people their lives and it seems no one is listening! No one is hearing our pleas, our cries, our shouts for awareness! Today, that tide seems to be shifting a bit. There has been much work and effort put into something called Ehrick Garrisons Act. The act now has support from all 50 united states and is gaining Chiari some much needed, well deserved awareness! In addition, theres the information I posted earlier. Devins efforts to get September recognized as Chiari Awareness Month nationally are FINALLY paying off and we are being heard in that regard as well! I have become connected to several more members of the Chiari community today and Im struggling to keep up with the posts happening in my support group today (which is a GOOD thing)!! So, there you have it. Lots of difficulties this week, much pain, considerable stress, lack of sleep, etc. have prevented me from being as involved with my Chiari community and with each of YOU as I would have liked. Today, the tide seems to be turning a bit in our favor, Im feeling much more like myself, and my biggest issue today is running out of time to accomplish everything on my to-do list. Thank goodness for that extra hour; I dont know what Id have done without it today!! I know many of you would like more information about the next steps in my care plan and I assure you I will post that information soon. Today, however, this post is long enough ;) and I still have a LOT to accomplish before bedtime tonight. Thank you all for your support, encouragement, concern, and care. I appreciate it more than you know!! Love and Respect, Toni #ChiariAwareness #ChiariMalformation #Chiari #AwarenessNOW #chronicpain #pain #chronicillness #fatigue #struggles #challenges #positive #lookingup #better #EhrickGarrisonsAct #September #ChiariAwarenessMonth #Love #Respect #TeamToni
Posted on: Sun, 03 Nov 2013 20:57:39 +0000
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