OK, so what does all that mean????????????????

I wish I knew!!!!! This is the question that I've heard over and over again since posting my blog yesterday. So here is my attempt to talk in non-medical lingo, bottom line-it so to speak. What MS does is destroy the insulation covering of nerves in the body which relay signals from the brain and spinal cord to the rest of the body. Once destroyed this covering cannot be regenerated and once lost the signals cannot be carried which results in places downstream not getting the instructions they need to feel normal. So what you are left with can show up as a variety of symptoms most commonly numbness, tingling, altered sensation, much like my original symptoms in my left hand, thumb, and 1st finger. Another primary symptom of MS is related specifically to the optic nerve (which carries b/w the brain and the eye to make you see). If that nerve covering becomes damaged or inflamed then it can translate to vision problems. The symptoms of MS vary widely from person to person in frequency and severity. It is considered a progressive, degenerative process which means that is usually gets gradually worse over a long time frame. Some cases are much more rapidly progressive than others but the majority of people fall into a category called relapsing-remitting MS which means that over time they have relapses where they suffer new symptoms which generally resolve completely. Then they go an undefined period of time feeling perfectly or very closely perfectly normal. MS does not carry the terrible prognosis that it did in years past as there have been several advances in treatment like I talked about which is targeted at prolonging the time b/w relapses or preventing them entirely. I will spare you all the more devastating symptoms that can be associated but are far less common. So what does this mean for me? It means that I will be taking medicine in the form of injections, much like people with diabetes take insulin shots, only mine will be 3x/wk rather than multiple times/day. It means that I have to take xtra care of myself to maintain good overall basic health. Some of the less serious but annoying issues are that heat can cause worsening of symptoms so being outside in OK on an August afternoon at the zoo probably isn't recommended, darn!! It means that I might get tired more easily than before and have some vague aches and pains. What it doesn't mean is that there is really anything that I can't do if I feel like it. It doesn't mean that my overall life span will be necessarily shorter than yours or anyone else who takes good care of themself. So it means that I could use all the love and support you have to give. Please don't be afraid to talk to me about it. I am still adjusting to the idea myself and while I know a lot, I don't really know how I am going to feel. What I've described above is based on what I've read from other people's experiences. After all, I've only officially been diagnosed for 72 hrs and I've only had symptoms for 3 mo. What I do know is that people live healthy, productive lives for decades with MS and you might just be surprised how many people you know or see each day that have it unbeknownst to you. So what I need is for you to be positive and remind me when the going gets tough just how much I have to live for in case I forget. I will tell you that as hard as it is to accept I know there is a plan in this beyond anything I can fathom b/c God is in control and He will see me through.

The long awaited diagnosis.....................

Well this isn't going to be an easy update for me but I want those who know and care about my family to know what's going on with us and more specifically with me. I've previously told you about my health concerns and the testing that came as a result. After an almost month-long wait and much anxiety I met with my neurologist last Friday. The short version is that the viral processes being considered have been ruled out which leaves us with a working diagnosis of multiple sclerosis. Apparently there is no 100% definitive test for MS but a very high percentage of people with MS have a certain antibody present in their spinal fluid and that antibody is present in my spinal fluid. In addition to that, I have one sclerosis on my MRI's. So the neurologist says technically I don't quality for the diagnosis of (multiple) sclerosis as I don't yet have multiple lesions but all things point toward that so I should consider beginning treatment. While this was certainly not what I wanted to hear, it wasn't as big of a shock as I suppose it could have been since I had been told several weeks ago this was a likely diagnosis. Still, it's not real until you hear it for sure. As you might imagine this has brought about an overwhelming emotional response as well as the practical response of what now. I've been angry, sad, scared, anxious, you name it, I've experienced it these past 48 hrs. Ironically enough, stress is a trigger for causing/worsening MS symptoms, so how does one deal with it and minimize the associated stress? I guess that's what I must learn to do. I have done a fair amt of reading and am well-versed in the medical realm of MS. Now I face the reality of applying that to my life and making the decisions regarding treatment. So what is treatment you are asking? Well my neurologist considers himself aggressive and based on what I have learned, I think we will get along well. You see while there are several new treatments for MS that weren't available just a few years ago, they only slow and/or prevent the progression of the process. The medicines cannot restore function already lost or cure lesions already present in the brain/spinal cord. (Multiple sclerosis is an autoimmune process where the body's own immune system attacks the healthy tissues of the brain/spinal cord, specifically the myelin sheath which protects the nerves that transmit impulses from your brain to your body.) So basically once the damage is done, there is no medicine at this time to make it better. Having said all that, it seems like a no brainer to me to get started with therapy ASAP. Despite that being my doc's recommendation he didn't think 5:00 on Friday afternoon after being hit with such a blow was the time for me to make a snap judgement. So I am to meet with him this week to set up a treatment plan. Meanwhile, my neurologist, while certainly qualified to treat me, is going to contact another neurologist here in OKC that treats only MS patients to see if he had any other suggestions or thoughts. It does seem that I am in the best hands possible. Back to what treatment is: treatment varies slightly but all are meds called interferons that mimic the immune system's good functions. They are given by injections, the one recommended to me is 3x/week. They do carry some risk of side effects, mostly flu-like symptoms, which supposedly are supposed to decrease in severity as your body adjusts to the medicine. There are of course other risks but apparently feeling overall crummy is the biggest thing for most people. So I am not excited about that but I am determined to do what I can to keep myself as healthy as possible. This is where the anger comes in sometimes when I think about all the people who don't take care of themselves and are just fine, when I consider myself a healthy person who works at it and this happened to me. At this time, doctors don't know what causes MS but have some ideas related to genetics, viruses, and other misc things. It is more common in women and in certain geographical areas farther away from the Equator. So now that you know more than the average person about MS, you have a piece of what I've been introduced to as the new state of the rest of my life. A little overwhelming isn't it?

So what has the rest of July encompassed for my brood? We did make it to Lake Murray for a few days and managed to have a good time despite the crowds and the 1st really HOT week of the summer. We came home a day early as we were laked out! We still had another day off work so Mark, Auntie KK, and I took the kiddos bowling, to a movie, and out to eat for a lazy family fun day. Good times were had by all, and best of all I beat my husband at bowling for the 1st time ever. He will tell you it was just b/c we had the bumpers out but hey winning is winning. I think Garrett came in 2nd if that tells you anything about how our game went, haha! After that it was back to work to try and make up for the lost days while I was laying flat on my back after the spinal tap. I can't remember if I told you but I did end up getting what is called a blood patch to cure my spinal headache. One of my dear anesthesiologist friends made time to place the patch via another needle in my spine, I'll spare you the details. Anyhoo, it fixed me right up and I've been good to go since. What a shame it took 6 days to find out I could have that done. Many thanks to my good doctor! With only a few weeks before school resumes we are trying to make the most of our remaining summer. The beginning of my treatment clouds the issue of our upcoming activities, not knowing how I am going to feel. So we will probably lay low and try to stay cool. I'm going to try and add some pics of our lake trip. Man it was hot. Funny how I've lived basically my whole life in OK and I manage to forget between summers just how hot it really gets here. Until next time......................

On a lighter note.................

Someday I will learn how to get the pics where I want them to show up in the post. I do not claim to be a computer guru as you can see by the quality of my posting. Just don't let the presentation overcome the news!! As you can see we have managed to have a busy June despite my medical mischief. Mark and I celebrated our 11th wedding anniversary with a night out to dinner/movie thanks to some of our great friends and my sister who watched the kiddos. We attended Mark's family reunion in Sallisaw and were able to leave the kids there for 4 days while I endured the bulk of my tests. Mark and I have continued to work as normal of a schedule as possible. While in Sallisaw for the family reunion we were able to spend a day at Lake Tenkiller which is where all the water shots are from. The others are just the kids being kids and enjoying the fabulous summer evenings we've been blessed with.
Hope the summer isn't passing you by and you are all taking the time to make the most of it. If there is anything my newfound perspective has taught me it is to make the most of every moment. Some people understand that better than others. I suppose it is a process for all of us as I must admit even my own understanding has grown significantly this past 6 weeks. We are planning to do a little more lake time next week if possible at Lake Murray which is a new destination for us. We are looking forward to time away. As always, more to come. I will try to share what I find out with you as I am able. Thanks to all who have been such a tremendous help these last several weeks. It means so much..........

When the going gets tough..............

Well things around here have been pretty challenging for me specifically and the family indirectly. You probably remember my mention of my left-hand numbness and pending MRI of my neck. Well in the last 3 weeks that MRI has been repeated with contrast, which brought about a consult with a neurologist, an MRI of my brain, and a spinal tap. As you may have figured out all of that brought with it a great deal of anxiety on my part with the what-if's and potential diagnoses. I wish I could spare you all and just tell you the answer but you will have to wait right alongside me. The working broad-spectrum, if you will, are 2 potential pathways, one being a diagnosis of an MS-like sydrome (multiple sclerosis) or something else called a viral transmyelitis. Now in general the latter of these 2 would be the preferable diagnosis with regard to the longterm picture. My neurologist has made me promise that I will not pursue info with regard to either of these until we have more info. The additional testing I mentioned earlier will provide the info needed to isolate out what is causing my symptoms and guide my future therapy. I would appreciate all your prayers as my family and I try to stay calm and remember who is in charge as this process unfolds.
This whole process has been just that, a long and drawn-out process of one test followed by waiting, uncertainty, a little info, anxiety, and then it starts all over again. Fortunately I have been connected with a great neurologist whom I love and have been very pleased with. As I write this, I am hope still trying to recover from my spinal tap, which is supposed to be a straight-forward inconvenience that people have everyday. That is unless you are the one having it. Now as nurse I can't tell you how many of these I have assisted with over the years but it is another issue entirely when it's your back the needle it going into. For that matter, enduring these last few weeks has taught me a lot about what it's like to be on the other side of the medical treatment. The Lord has certainly placed a few key people in my path who have been great but overall I have been disappointed in the very system that I pride myself on being a part of. It sure puts things into perspective but I could spend all day telling you about my newfound "perspective". Anyway I have encountered a complication of my spinal tap called a spinal headache which is when the hole poked into my spine through which to obtain the spinal fluid for testing doesn't immediately seal up and there is a slow leak of fluid. This is the very fluid that surrounds your brain and cushions it while you go about your everyday activities. Well you sure don't know what you've got until it's gone. While the body is constantly making more, it can't keep up and when you get into an upright position there is an unusual pressure placed on the blood vessels and nerves in your head thus creating the 'spinal headache'. This is eased greatly by just laying flat which may seem like a simple solution until you try to live your life flat on your back. For those of you that know what my day-to-day operations are like or can imagine, you know how challenging this is for me. Lest you think it's just a matter of getting on with things and overcoming a little headache, let me tell you this is an incapacitating headache like I've never known. Along with it you get some other fun side effects like nausea, dizziness, etc. So back to bed I go!

I keep reminding myself this too shall pass but my it's hard to see the big picture at times. Please remember me in your prayers that this will soon be behind me. I have 3 precious children and a sweet husband that I would like to take care of in the ways I am accustomed. In addition there is still the anxiety related to the ultimate diagnosis which we hope to have an answer to late this week, early next week. That too is always in the back of my mind!!

Here are some pics of what we've been up to around my medical journey as we try to make the summer as fun as possible for the kids while this unfolds.