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.

Week seven - Living with MS

By week seven of this flare I almost feel like my symptoms are a normal part of my life. I am starting to get in a routine on how to manage most of my obstacles. This week my doctor helped me to look at ways of managing the anxiety and depression that go along with MS. She told me that I was one of the strongest women she had ever met and it was okay to ask for help. Being on my own now I feel like I have to be completely independent but there are things I just can’t do on my own. Dealing with the emotional part of the disease is one of them. I start with a new counsellor next week, one that has experience in dealing with those who have long term illnesses. I think I am on the right path so that I can keep my spirits up no matter what may happen. In the past few weeks I have felt down about things outside of this disease and I let it affect my healing. I can’t let the actions of others take away from my wellbeing. I decided to relinquish their power over me and I am a better person for it. It is funny though how people handle finding out you have MS. Last week I was set up on a coffee date with a friend of a friend. He knew my situation before we met, he saw a picture of me with her and he asked who I was and she told him about me. She only told him about the MS because of the issues with my speech and didn’t want him to be caught off guard if I was having a not so good speaking day. We met at the counter and we got our coffee then went to a table by the window. The conversation was pleasant we laughed and found we had a lot in common. About twenty five minutes into it he looks at me and says “I am going to stop right here, I just think I have time for a special needs woman in my life.” What the hell? It was just coffee and he was the one that asked me out. He then went on and acted put off like I had just stolen twenty five minutes of his life. I finally just stood up and said “I understand how you feel, I only have time for one asshole in my life right. Thanks for the coffee.”. I walked out and got into my car. It was just coffee with some guy I wasn’t going to see again anyway but still I cried as I drove to work. Here I am newly divorced after nearly twenty years already facing the unknown world of modern dating which is nothing like it was the last time I did it. Now I have the added challenge of having a disease that most people don’t know a thing about. I want to go out and meet new people, I want to enjoy the life I have while I am still able. My MS doesn’t take away from who I am or my determination to live a full life. I know there are people out there that understand and are supportive, I am surrounded by them and so grateful to all of them. But I know there are guys like Trevor who fear what they don’t know. I just need to remind myself on this crazy ride to keep a thick skin. So at week seven I stand before you thick skinned, hopeful and determined. I have MS it doesn’t have me.

Week four~ Living with MS

I am heading into my fourth week of this “flare” of MS. Every day has had a new set of challenges that I have had to navigate around and deal with. Every day I remind myself it could be worse, I can do this but sometimes it’s hard. The hardest part of all of this is how many people look at me and just say “well you don’t look sick”. That is the funny thing about MS not everyone who has it has symptoms you can see all the time. You can’t see that I have limited sight in my left eye or that my hearing comes and goes in my right ear. You don’t see that I have difficulty swallowing but you may have noticed I have lost weight. You don’t see pain or the muscle spasms. You don’t see the depression or the insomnia. Add that to what you can see the tremors that have grown worse over this past week. The slurred speech and loss of muscle control on the left side of my face. Those things I don’t let you see because if you see it then it makes all this real. I smile so you don’t see that I just want to cry and ask why me? I don’t look sick because I can’t look sick to get through this. From the moment the doctor told me I had MS I knew no matter what happened no matter how bad I felt I would keep my head up because I know it could be worse and I am luckier than a lot of people with this disease. I may not be able to control what is happening to my body but I can control how I react to it. When my arms fail to hold me up in yoga last night, I did a run/walk on the treadmill. When I couldn’t hold my fork to eat eggs this morning, I made a sandwich. When I couldn’t shave my legs because of tremors I wore pants. I have quickly learned there is a solution for most problems I may encounter and I am becoming well aware there may be things I will need help overcoming. Like the loneliness. It is hard to go through something that many people in your life don’t understand and some haven’t taken the time to try to because I don’t look sick. It’s up to me to help them with that. No matter how bad things get I will remind myself, I have MS it doesn’t have me. I will get through the bad times and embrace the good with every ounce of being. That is how I choose to do this.

We live, we make mistakes, we cry, we drink beer, we move on

We live… Well it’s been year since my last birthday…. Oh you heard that one have you? The last year of my life has been one for the books. And at the close of my 41st year of life I reflect on the things I have learned. The first thing I have learned about myself is that I am not as strong as I like to pretend that I am. Sarcasm is a reaction; it isn’t a shield or a thicker skin to keep me safe from bad things. I am in no way giving up sarcasm it can be very useful in so many ways just not truly guarding against the pain reality sometimes dishes out. And please do not think I am a total wimp I am still one tough gal but even tough gals need to call uncle every once and a while. We make mistakes… I fully admit taking the first job that was offered to me after I left my last job was not the smartest thing I have ever done. I may have missed an opportunity I had waited for for a very long time because of it but I can’t turn back time. (Yes you will now have the Cher song stuck in your head forever) I can only learn from this. Paranoia should not be why decisions are made. Something like this should have been given more than a few hours of thought and filling ones head with self-doubt. And if I hadn’t taken this job I may have never driven a fork lift or been trained on the Blood borne Pathogen Bodily Fluid Spill Kit. We cry….. It is okay to cry when bad things happen and you are scared. Sometimes the only way people know you are hurting is to see you cry. I swallowed a great amount of grief this past year and it tends to change you. Sometimes crying is cleansing it washes the bad out and leaves you with only good thoughts you want to have. We drink beer… I do like beer. I also like that there is a community of great ladies that I get to drink beer with and meet new great ladies and go to great new places. Thanks Indiana Girls Pint Out. We move on….. My 42nd year will be one of many changes. I will find a job that suits me better, I will get my health in order, I will cherish my family and friends. I will cry when I need to and probably drink a lot of beer. But mostly I will live.

My Mid-Life Crisis in 500 Words

I was told by a palm reader once that I would die just before my 84th birthday. Knowing me my death will be caused by my own hand. I’ll probably be run over by my hover round when I reached for my martini glass and fell out. I will be graceful until the end. With that being said, that would mark the next few months as my proverbial mid-life crisis. However my body and my life started my mid-life crisis last summer. My body broke down and then I lost my job of twelve years. I hadn’t realized until just recently that all that affected me more than I thought both physically and mentally. Lucky for me I have a good family and friends that kept me from going completely over the edge over this crazy year I’ve had. But still I am standing pretty close to the edge and I know it’s time to step back. Recently we have had some major flux at my current place of employment that has made me realize I am still mourning the loss of my old job. When you work somewhere you love for nearly twelve years, with people you truly care about it is difficult to let go. I didn’t really realize it until my six month evolution. I didn’t leave there on my own terms and I believe that makes putting it behind me so hard. I also realized that I wasn’t really as much a part of the company as I thought I was. I made myself fit in a way that didn’t really work for them and someone finally saw that. All things happen for a reason but it doesn’t make it any easier especially when I know without any doubt that I do not fit into my new job at all. I need to find the puzzle I actually fit into. And what I know I doesn’t fit into right now are most of the clothes in my closet. Funny thing about life it sometimes come with stress eating which adds oh so many pounds. I am the heaviest I have ever been and that includes pregnancies. I am not afraid to admit, I am owning the fact that I let myself go. Had I kept myself in check and taken care of myself I wouldn’t be here. And I know that I have to get myself back on track. Two years ago I was at the weight I wanted to be at and felt great I want to be there again. I know it will help my current health issues, it will help with my mood and my overall wellbeing. But I will need help this time lots of it. Not all midlife crisis’s come with fast cars and plastic surgeries. Sometimes they come with a few tears when you look at your sleeping children then the mirror and realize you could be better for them, you could be better for you. That’s how mine happened.