MS=

What is MS? I have had this question asked more times than not and the truth is I am still trying to gain an understanding of this condition. So, I guess I am going to do this in two parts, first I will give you a little clinical background on MS and then I will tell you what MS means for me. Multiple Sclerosis (MS) is a chronic and often times disabling condition that causes the bodies immune system to attack the central nervous system. Your CNS is comprised of your brain, spinal cord and optic nerves. This disease process is thought to be triggered by a combination of one or more environmental factors and the person needs to be genetically susceptible. That said, these are just hypotheses as the disease has much of the medical community stumped, so to speak. These environmental factors include but may not be limited to: 1. An immunologic factor: this is one of the newest theories in MS causation and it is now being considered that it may be an immune-mediated process, rather than an autoimmune process (yes, I know this is kinda confusing-even to me). This theory states that the immune system is somehow tricked into perceiving the myelin sheath (the fatty tissues surrounding the nerves) as an invader, therefore, the immune system initiates an assault against it. Researchers have effectively been able to isolate the immune cells responsible for this process. There is varying research that suggests that the immune response may be the result of a hyper-active response to a virus or a vaccination. 2. Environmental-MS occurs more frequently further from the equator. Epidemiologists (scientists who study disease patterns) show that people born in particular areas have a higher risk of developing MS. This scatter groups are being looked into. I was raised in Ventura County and Ventura County is one of these scatter pattern groups. While these patterns are being investigated nothing conclusive has been found. 3. Infectious-this ties into the immunologic factor. This theory discusses that exposure to viruses, bacteria and other microbes in childhood could possibly illicit this immunologic response. There are currently more than a dozen illnesses and vaccinations being investigated as a possible factor in developing MS. 4. Genetic-MS is not hereditary at least not in the strict sense that we think of hereditary patterns. Common genetic factors may be present within families but it is thought because the genetic predisposition may be carried through gene lines. Okay now moving on to the damage. As part of the immune attack on the central nervous system, myelin (the fatty substance that surrounds and protects the nerve fibers in the central nervous system) is damaged, as well as the nerve fibers themselves. The damaged myelin forms scar tissue (sclerosis), which gives the disease its name. When any part of the myelin sheath or nerve fiber is damaged or destroyed, nerve impulses traveling to and from he brain and spinal cord are distorted or interrupted, producing the variety of symptoms. So what are the common symptoms of MS? Well, truth be told there is no "common" MS. There is the textbook definition and then there is the real life MS. MS is different for everyone who experiences it. No two people experience things in the same way or the same pattern, so trying to relate to someone on a symptomatic level is an incredibly difficult thing. The most common symptoms, however, are: Fatigue, numbness and tingling, problems walking, bowel and bladder dysfunction, vision problems, dizziness are vertigo, sexual dysfunction, pain, cognitive and emotional disturbances, depression, spastic muscles (cramping), problems swallowing, headaches, hearing problems, itching, tremors and seizures. So, like I said these are the "textbook" MS symptoms but these aren't the symptoms that effect everyone and no two MS cases are alike. So, now that I have given you a cliffs notes run down about what it is and how it presents. I will tell you what MS means from me. From the best of my recollection, I began presenting with MS about a year a half ago. I had my first experience with numbness and tingling in my right foot that lasted about a week. However, numbness and tingling happen for a variety of reasons and obviously I didn't run off to the physician saying I have MS. For anyone that has known me for any amount of time I am the shoe queen and high heels are kinda my thing. So it was easy to attribute this pain to my choice in shoe wear. About a year ago, it happened again, to a much more severe extent. I was sent to an orthopedist since I have idiopathic scoliosis. The orthopedist could find nothing anatomically wrong that could be attributed to the pain and discomfort. I was given muscle relaxants, pain reliever, physical therapy and sent on my way. Again, the pain and discomfort moved along and I was pretty much symptom free for another 6 months. About three months ago while traveling on business, I was unable to swallow. I had to have the Heimlich maneuver performed and was unable to swallow for about 20 to 30 minutes after. I had NO IDEA what the hell was going on. But, like all other symptoms I rationalized it as some sort of traveling weirdness. So, fast forward to October of this year. My feet were doing terrible I was having these weird feelings, like bugs, crawling and biting under my skin, once that stopped the pain was such a deep hurt, something that I can't explain as I have never felt it before. It was unrelenting. On October 28th, I awoke with the toes and base of my right foot totally numb. I showered and prepared for work and the numbness and tingling crept higher by the time about 30 minutes had past it was up to my knee and it was time to go to the emergency room. It was there I had a CT scan that suggested a demyelinating process. That Monday I saw a neurologist who was dismissive at best and have spent the last few weeks navigating through neurologists, MRIs, my primary care physician and now...the hospital. Over the past week, I have had some pain and pressure with mild visual changes in my right eye. On Saturday morning I awoke with blind spots and again it was time to head to the emergency room. My MRI showed an active lesion on my occipital lobe (the spot that isr responsible for vision perception). I also have two other small areas of activity and several small lesions scattered over my brain with two larger ones. Over the last three days, I have gradually had strange vision changes which include the reduction of my visual field in both my right and left eye that is expected to get worse before it gets better. Right now, it is almost like the bottom half of my vision is gone. Like I explained in yesterday's blog. So, what does MS mean for me? It means unrelenting pain in my legs. It means crying myself to sleep more often than not, it means losing my vision, it means never knowing when I am not going to be able to swallow, it means fatigue that hurts to the bone, like this really terrible, disgusting tiredness and there is not a damn thing I can do to make it better, right now it means daily drips on steroids that make me want to crawl out of my skin, it means crying daily about the unknown and fearing for the future, it means 15 pills a day just to keep the symptoms at bay. Yep, right now that is what MS means for me. It isn't fun, not knowing. It is scary and lonely. But, it is what it is. I have MS. MS DOES NOT have me.

Sight.

Well, it finally happened. I guess somewhere, deep down I knew it would. It had to. It was the inevitable. There had to be a day that my illness hit me in the face screaming "Tamara, you have multiple sclerosis". Yesterday, was that day. I woke up partially blind in my right eye. It was strange as I processed the idea. It wasn't black, it wasn't white it was nothing. Nothing is scary as hell because nothing is totally unknown. I calmly told Steven we needed to go to the Emergency Room, as we waited for my sister and father to arrive I sat upstairs suddenly realizing my worst fear about this disease had been realized. I was losing my sight. Vision, like many things is totally taken for granted, that is until it is gone. So many thoughts were running through my head attacking my sanity: what if you don't see again, what if you can never see your children again-that thought was numbing and nauseating-they are my reason for breathing. For fighting like hell to make sure mommy doesn't change in their eyes. I don't want them knowing mommy is sick. How do I explain that mommy cant say. I would miss all of the "mommy, watch this moments that I absolutely live for. My heart began to ache and eventually I broke down. I cried. Heavily. I hate saying "this isn't fair" because there are far more people inflicted with conditions that are far beyond mine. But, it is my fall back. It isn't fair. Why me? Why now? Ugh. These thoughts haunt me but then I remember there is no sense crying about what is going on. When I am crying I am not fighting and I am going to fight this like hell. I am going to fight through the sight loss, the hospital stay, the pain, because there is no sense in lying down and living in the world of "this isn't fair". So, for now I am going to rock this eye patch, do the gangster lean with my IV pole and hope the high heavens the steroids don't jack me up to the point where I am an angry little demon.

Everything leaves a mark

I ran across this quote today on pinterest while browsing through quotes to add to the decorations on my bodily temple. I wanted something that would highlight this new moment, this new chapter in my life but feel strongly against getting anything "MS awareness" on my body. I don't feel I need to brand myself with the Scarlet MS letter and would rather have something subtle with meaning to me and to those who know me. Well, I got to thinking about this quote "everything leaves a mark". I never realized how very true this was, but then again, I never really thought about it, until now. Everything we do, every minute, every moment, every action...leave a mark. Sometimes the mark is more indelible than others but the mark has been made. And chances are we are living these moments of our lives never realizing how permanent and lasting some of these marks may be. These marks may be perfect and amazing or horrible and disastrous. The marks may be beautiful or they may be ugly. But, they are marks nonetheless. Isn't that a profound thought? Every second of your life a make is being made. Every action that is being performed is forever altering you or the life of someone else. But, far beyond this lies our own personal power and control over these marks. We have the power of response. We cannot change what is happened but we can absolutely control our reactions. This week has been a challenging week for me. My pain level has been through the roof, I have spent most of my days restless and in tears. But, I have refused to let my children be affected by this. I will not allow this mark to be left on my children. They are too young to understand anything beyond "mommy doesn't feel good" and whiile I am busy focusing on not leaving a mark on my children. My children are leaving a mark on me. They remind me every day what I live for. They remind me what I am fighting for and they are my inspiration to wake up every day and to fight like hell. Everything leaves a mark.