Yes they know a lot, but only you know your body. This is a funny thing coming from someone who has no clue what her body is going to do from day to day. Even with that though, I know if something going on with my body is normal for me or not. Many of the things can be related to the MS, but every once in a while something comes up that is not. Many times though when I go to the Dr. they automatically push it off as the MS. Those are the times when we have to summon all of our strength and tell the Dr. that they are wrong. It is hard to do, but sometimes you have to. If your child or loved one is sick, we are more than willing to push for answers, but too often when it is with our selves, we just let things go. This is a lesson I have learned the hard way, and more than once (I am a little hardheaded, so some things take longer to sink in). If you are experiencing new pain, numbness, or anything, you have to get it checked out. Even if it is just the MS (or other disease) the Dr. needs to know so that they can keep track of what is going on. Like I said Dr.s don't know everything. This is true for the fact that they can be wrong, but also that we cant expect them to know everything right away. Yes they are the ones with the degree and are paid the big bucks, but they are not living in our bodies. We have to take the responsibility to be honest about what is going on. A great way to do this is to make a list and keep it with you. Any time you experience something different, write it down, you can add things as needed, or cross things off if you want because you find out they were something like a bug bite..ect. It will not only make things easier during your appt., but it will help you gain a little bit of control over your disease. Oh yeah, and for all of you reading this who know me, I don't need comments on how I should follow my own advice..lol, I know that I am good at knowing what to do, but not at actually doing it (I already admitted to being hardheaded).
It is funny how when facing something like illness, your priorities change. The things that you used to view as important, or think you couldn't live without: you realize how insignificant they are. When I was first diagnosed with MS my biggest fear was being in a wheelchair. I didn't know how I could still be as active as I was used to being from a wheelchair. Well I have to say, after being in a wheel chair and now having the strength back to walk, I now realize that not having proper use of my legs was pretty much on the bottom of the list of things that were important. It is hard when you have to realize the reality of what is to come. I had a Dr.s appt. today. The whole way there I was praying for the Dr. to tell me that they had found something, anything but what he did tell me. I am sure people will throw a fit at me for saying this, but if you sit and think logically, you will understand what I am saying. There are so many things that it could have been that I could at least hope for a cure, or anything to help me get better. When the Dr. drops the bomb that it is the MS, all hope flies out the window. I know that it is almost impossible for someone who has never been sick to understand. The first words of "comfort" that I received after my appt. were "well, you're doing better than you were before because you can walk". I know that those words were supposed to be comforting, but they just made me mad. Yes I can walk, but every night when I lay down, I feel like someone is slicing at my legs with a jagged knife. I cant control my bladder, and the muscles to my bowels are too weak so my body is filling with toxins causing me to get sicker, I cant remember if I have eaten, brushed my teeth, or when the last shower I had was without writing everything down. Even then, I forget where I wrote it. I found four books when I rearranged my room, and all I had written almost the same thing, that I was starting this book so that I can try to remember things that go on during the day. I shake too badly for me to draw or paint, my lungs aren't strong enough for me to sing anymore, everything I once loved is now a memory that I cant even remember. But I am supposed to be thankful that I can walk.
I have been unable to blog for a few weeks due to not having a keyboard for my computer. If there is one thing that I have not figured out how to do despite this disease, it is using a touch screen to write a blog. A lot has been going on lately, but none of it very exciting I feel. I have been going to the Dr.s pretty continuously to see what is going on with some problems I have been encountering. I am hoping that all of these problems are stemmed from the MS, but I guess the Dr.s have to waste time testing for everything under the sun to rule out anything else. I have lost 40 lb.s now in the span of 2 months, have severe swelling in my lymph nodes, pain, and fatigue like I have never experienced before in my life. I am so hoping that it is all just a flare up of my MS. I have done research and have not found a link yet, but that is one of the good things about being so stubborn, I wont stop until I do.
Today is one of those days that I would love to just stay in bed. Last night I couldnt sleep because I felt like there were lead weights all over my body. Even today, I feel like I have ankle weights on, and my head is pounding. These are just a few things that my MS does to me many days. When the Dr.s ask what it feels like, I simply say, "it feels like I have a lead blanket weighing me down."
There is nothing that I can take or do that makes it better. This has been a blow to my ego. I have always been a if you think it, you can achieve it, type of person, you know, mind over matter. MS doesn't follow those rules though. When the disease takes over, no amount of "forcing" myself does the trick. Lately it has been worse because my blood sugar has been really hard to keep under control also. I am very blessed that I have great kids who help pick up the slack when I feel like this though (now if I could only get them to keep their rooms clean). Another thing that I have been having, and from what i hear so have others, is severe pain in my hands. This pain makes everyday things excruciating. I think a big part of it is that my circulation has been so bad. I find that if I wear my fingerless gloves it helps a lot! Just like everything in life, dealing with MS is a learning game that sometimes you can learn from others and sometimes you have to figure it out for yourself. So today has been a horrible day. But it should have been a great one! I was asked by the town to speak at the World Wide Day of Prayer service. I did, and it was so great to get to speak and have people actually listening to what I say. But just like always, everytime anyone praises me, I get smacked back down off my pedastle very quickly. You see, I won't mention people specifically,but, there are people who are natural caregivers, and there are people who naturally need taken care of. This is not necissarily because they have something wrong, thye just really like being taken care of. Many times those people are thrown into a situation where they have to become the caregivers. Sometimes it works, but many times it doesn't. When it doesn't they don't know how to handle things being turned around and the other person getting attention for anything. Whn this happens they quite often turn on the other person. This was my day today. As if it wasn't enough that I got to be the center of attention, but the last few days I was given an awesome opportunity which is still in the works, to be quoted publically by a company, and was told that I couldn't work on Wednesdays because I was too missed at bible study. All of these things made me feel like I was walking on a cloud. Not for long though. These are the trials that make us stronger I guess. While this post didn't necesarrily have anything to do with my MS, it is something I thought I should put out there because of all those people who are caregivers for someone sick, or someone who needs a caregiver. It is a two way street and we have to be so careful not to knock each other off the road because of our insecurities or jealousy.
I started working at the local grocerystore today, well actually I trained yesterday, but today was my first official day of being "on my own". Since getting sick, I have tried quite a few different types of jobs. So far they have all proven to much physically for me. I am not sure yet about this one. I have been really blessed with my different jobs. They have given me a greater appreciation for what goes into many different types of jobs. When I was first diagnosed, I was a teacher. After that I tried to stay home and babysit. Then I worked as an aide at a nursing home. For a while I was a cook at a Chinese restraunt. Now I work at a grocery store. I have done many "small" jobs between, but these were my "main" jobs. I do like working when I can. It makes me feel like I am giving back to my family some, since they have to take care of me so much. I joke with friends that I hurt when I get home, but it is a good hurt (not that good hurting actually exsists) but somehow the pain is more bearable because I know that I actually did something. This is unlike the everyday pain that I get from doing nothing( that is the hard pain to deal with). My kids love that mommy works at the grocery store, they get to come there after school and get a treat. This is the first job since teaching that my kids liked. They want me to get a job at the school (i don't think they understand that I can't do that physically), but it makes me feel good that they would want me at school with them. I know that I won't be able to work forever, but I am just a little hardheaded (my kids have other names for it). But this hard headedness I think is what keeps me going every day.
I was diagnosed with MS in 2007. I have had ups and downs, good days and bad days, but I wouldn't give up the lessons I learned for anything.
It all started one beautiful summer day at a local water park. I was having fun with the kids and I started feeling a little tired. I figured it was from the heat. I had been getting this for years, if I got to hot or over exurted myself, I would get so tired that it was impossible for me to stay awake. In grade school I was given special permission to "take naps" if I needed them, and in highschool I would still take naps many days (no permission was given though). I spent a little while laying down resting on the lawn chairs. When I got up my butt had fallen asleep (or so I thought). The next morning when I woke up I freaked out. I could not feel anything from my waist down. Needless to say I was rushed to the Dr. who set me up with all kinds of testing. He also got me a wheel chair to use. I am very stubborn and at first refused to use it. I would do this funny walk with crutches where I would use the crutch to move my foot where it needed to be. It was slow but it worked, well sort of. After falling through the back door window because my foot caught and I didnt realize it, I decided that maybe I should use my brain and use the chair. When I was told I had MS, it was in my mind a death sentence. I had known quite a few people with this disease who had to change their lives drastically because of it. Now I feel differently. Yes my life has had to change, but in so many ways for the better. | AuthorA mother with MS just trying to make it in this world. ArchivesMay 2013 Categories |
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