Week 12 of Living with MS - My New Normal

Thursday starts week twelve of my flare. By now I have a groove. It isn’t my favorite groove but it is what I have at this time. I take each day as it comes and find ways to deal with whatever that day has to offer me. But I do admit the last two weeks were pretty rough and I cried a few times. I should have asked for help but I was determined to do it myself. I sat at my doctor’s and she put her hand on mine and told me that some things are getting worse and It was time to start asking for help. It is hard to go from being a helper to be the one needing help. When you are a stubborn person it is an adjustment. But the one thing I have learned in this eleven weeks is that it is okay to need help and rely on others. It is okay to cry sometimes and be a little pissed off especially when you really want to just tie your shoes and go for a run and you can’t. So you do yoga, find your chi and move on. My new normal is MS and learning to deal with my symptoms and making adjustments in my life. Since no two people have the same issues with their MS there is no blanket checklist of all the things you need to be aware of or prepare for. We all have to have our own checklists. A list of all the things that we may have challenges and the possible solutions. I am making my life MS friendly. I refuse to give up anything I am doing or want to do, I just may need to find a different way to do it. I met a woman who had one symptom with her MS and she told me all the things she had given up because it was too much. I had just read an article about a man with MS who was in a wheel chair most of the time now but he was still mountain climbing. I can’t judge her because that is her choice but I can feel really bad for her because climbing a mountain to me is easier than giving up things you love. The grief and loss you feel will weigh you down and make you bitter. I will never say “I can’t do that” I will say “I will find another way to do that”. This is my new normal. A month ago I found challenges in my home. I couldn’t use a can opener, I couldn’t use a corkscrew. I guess it was at that point that I realized my home was not very MS friendly. It is amazing all the things we take advantage of each and every day like opening a door knob. There are days I can’t do that. Luckily I have mostly handles, but the one door knob needs to go. My shower hates me, I need to get a handle installed and a rubber mat so I don’t fall. I need a new shower head for days I can’t stand and still need to wash my hair. Even getting to my crafting supplies can be a challenge. But my wonderful friends, my wonderful village, are having a housewarming for me to help make my home MS friendly. They want to make sure I have am able to do the things I need to do and I love to do. I cannot put into words the gratitude I feel for the people in my life and their support. I just am in awe and it gives me a strength that will get me through anything I may face and I have some to spare to help others. My new normal is where I am meant to be right now and that is okay with me.

Week Ten living with MS

Today started week ten of symptoms. I had thought by this time there would be improvement but I have had some setbacks. The left side of my body is starting to lose control more often. My arm is daily my leg comes and goes. I couldn’t run this week which was rough, I have enjoyed being able to that. But I did other things I enjoy instead. The Kenpo and YogaX from the P90X series has been a godsend to me for my balance. If you have never done either of these, I highly recommend them, they are part of my weekly routine anyway but doubling up on them made me feel pretty good. Plus I dropped another pant which is a pretty nice benefit. I may have MS but I am going to have a really great butt for 44 years old. After the neurologist debacle last week I called out for help to find someone who knows about MS. I was so happy with all the good information I got from friends and family. I am working on getting referred to a local MS specialist. She doesn’t have an opening until November however. I thought about it for a while and my gut says to wait to see her. If I feel that I am getting worse I will seek help elsewhere but I don’t want to go to someone else and have the same results as last week. And I am not sold on being medicated. I don’t like the symptoms but reading over the side effects and the what ifs from all this medication I think the symptoms are a cakewalk! I kind of like my liver the way it is and I don’t need any more anxiety! In my reading and research I learned that the mono I had when I was fourteen may be a key factor in my MS now. I was already predisposed to autoimmune conditions add the Epstein Bar Virus and it sounds like I was a MS incubator. Who knew right? But that means my liver and constant medication may not be a good thing. A great many folks have shared articles on lifestyle changed that could help me. I like the idea of taking a natural approach and if I have four months until I can see a neurologist with a specialty in MS it is as good as time as any to put this in play and see what happens. I had already started the vitamin therapy which has help with some memory issues I was having. Drink your milk when you are young kids, that is all I will say! Eating less bread and pasta could kill me emotionally but if it helps slow down some of my symptoms I can learn to love zoodles instead of noodles. Again I don’t know if this will work but it is worth a try. And I know that medication may be my only option to prevent things from progressing. MS is a tricky thing. For many of us it is different every day. Last week I couldn’t see this week I can’t hold a spoon. Next week I could run a marathon. I won’t know what will happen until it does. But what I do know is that I am not going to let it run my life. No matter how hard it tries to knock me down I have to keep going because I have a lot of life left to live and I want to live it to its fullest. So week ten bring it, I am ready.

Week 8 living with MS - What Now?

Week eight is coming to an end and I had hoped today I would have a game plan on how to deal with my MS. I met with a neurologist this morning. I would have thought after two months of my tests being done that the person I saw would have looked over the results. He was looking them over as he walked into the door. The first thing he said to me was “Well it looks like you may have MS, oh yes here, it was determined you do have MS”. Then he went through all the tests to tell me what I didn’t have. Then he finally said he didn’t know that much about MS and I quote he said “not many people really do”. BUT you are a neurologist and they sent me to you. This was the first time in the past nearly nine weeks that I felt hopeless. In this moment when I needed someone to give me answers I had a doctor tell me I needed to do research on options. What the hell? I can’t even afford to pay for this visit and you want me to research options? “Maybe you would like to see one of the MS specialists, but they aren’t available for a while.” I would like to see someone that knows something. He then told me things he did know. The damage to my sight in my left eye is permanent. I have arthritis in my wrists and hands from the lesions in the spinal cord for my neck as well as paralysis in part of my throat. All permanent. Well I was never going to be a singer but I did need my sight and hands to craft. I guess I will keep going until I can’t. My other symptoms will come and go depending on flares some may get worse as time goes but they may not. There is no way to know, even I know that from my reading. He handed me a stack of medication options to look over telling me that most of them I couldn’t take because of preexisting issues but I might want to read about them. So you want me to read about a medication that might kill me or cause me to go blind early, this seems like a good idea to you? “Well call me in three days to see which medication you would like to take and then we will see you back here in three months.” What the hell just happened? I walked to the car holding all the booklets and pamphlets and I just wanted to scream but the really good happy pills that my GP gave me just made me laugh. The woman in the elevator thought I was insane, nope. I have a broken body, a broken bank account and a broken car. But it could all be worse. And I am luckier than many. So now my game plan is to find a new doctor which many people have already made suggestions. Then I will make sure that I know some options that may work for me before going into this. I will look at medication free options. And I will scream from every corner of this city to everyone who will listen, to donate to the MS Society to help find a cure and to help educate people about MS. We need more answers not more questions. And so on to week nine.