Thank you! Week 28

Tomorrow will be the start of week 28 of MS symptoms. Two weeks ago I started medication that will help to increase my remission time whenever that remission comes. For now I am in the midst of some pretty yucky side effects and one of the worse weeks I have had since I was diagnosed and yet I am hopeful for what is to come. The past year has been one I wouldn’t wish on anyone but I survived and I am a better person for it. I have met so many wonderful people and grown closer to people I already knew. I am so grateful for those relationships and what I have learned from them. You never know who will be by your side in times like these but I couldn’t have better company. I am grateful for the support I have been given both personally and for my little craft business. I am grateful that someone taught me the importance of learning to respond to situations instead of reacting. I am thankful for the lessons my children taught me most of all will continue to learn from them. I am grateful for my new neurologist who thinks I am nuts but is still willing to work with me on the way I want my treatment to go. I am thankful for the little old fella who is the greeter at my Walmart that tells me every time he sees me I have a nice smile, you are certainly a flirt Frank but it makes a gal feel good. I am thankful to the friend who gave us our little Christmas tree this year. It was given from the heart at time where she had suffered a great loss. I am lucky for the special person in my life that just makes me smile knowing he is there. I have a lot to feel good about and even if I go to week 29 or beyond with symptoms it will all be okay. There is always something good to out way the bad and that is how I choose to see things. Thank you all for your support and good thoughts. It means more than you can ever know. Merry Christmas and the best of New Years to you all.

Week 25 Living with MS- New Year New Hope

Week twenty five of symptoms. By the time all is said and done I will have spent more than half of 2016 with MS symptoms. The past three months month have been the most difficult I have had. The tremors have been difficult and at times terrifying and yet I know it could be worse. I am almost used to the slurred speech and the on and off vision in my left eye but the tremors a little harder to deal with. I saw the neurologist last week and he couldn’t believe I have been dealing with this for so long. We discussed my options, I could either take meds to treat the symptoms or look at medication that would help with longer remissions. Well I haven’t had a remission on six months and I have been dealing with the symptoms pretty well even when they were bad. So I opted for longer remissions. My medication options were less than originally thought as he officially diagnosed me with Secondary Progressive MS. I had been told it was likely that was what I would be diagnosed but its now official. My medication options changed and I was approved for one by the pharm company, I am not waiting to see what the insurance company says for cost. That will be the kick in the pants. But luckily there are resources to help me. There are side effects that are scary but people go on this every day so I have to believe that I will be okay. I have made it this far right? I am hopeful that I will see remission and maybe I will be lucky enough to go three years like I did after my first bout of optic neuritis that would be something! So in my head that is my goal to keep focusing on the in between time although after six months I am not sure if I can handle normal but I am sure as hell going to try. As 2016 comes to an end I could say that it was the worse year of my life but it wasn’t. In 2016 I found myself again and I learned that I am so much stronger than I ever thought I was. I learned that I have a village of support that stretched the globe. I reconnected with wonderful friends and family. So I can’t say that 2016 was bad. I am however looking forward to 2017. I am looking forward to my new treatment. I am looking forward to new adventures. I wish everyone in my life the best for the new year, I am so grateful to you all.

Today I cried

In the past year, I was divorced, my children chose to live with their father and I was diagnosed with a crippling disease. Rarely did I cry when all this was happening. There were moments but never did I sit and weep for myself. This morning as I read the headlines I wept at first it was for our country and in the end I cried for myself. I am a woman with a disabling disease that was sexually assaulted while I served my country. The man we put in office has no respect for any of the things I am or what happened to me. His agenda will take away my rights as a woman. His agenda will make health care for my disease more difficult. His agenda will take rights away from my friends and people I love and respect. I wept for all these things and I wept for what could happen to this country, the country I served proudly even after what happened to me while doing so. See that man on my television and hearing his words made me relive a time in my life that I thought I washed down the drain the day it happened to me. I wept for those memories and what was left of my innocence at twenty two years old that washed down that drain too. People who know me know I don’t cry easy. But I will cry today along with a great many. I am disappointed that there were so many that believe this was the right choice to make but I won’t judge them. We all have a right to our decisions and today I decide to cry. Tomorrow I will hold my head up and know despite what happened I did what I could and I will move on.

Week 20 of MS Symptoms-Piece of Pie

Week 20. The last time I had to comment about week 20 I was pregnant and I was at the halfway mark. But this 20 weeks is different. The doctor and I talked about things to do naturally to help with my symptoms. My exercise helps. I find the weeks I don’t have my regular routine the next week is worse. The past few weeks I have been off so it is no surprise to me that I am having issues. Diet of course is the other. I eat pretty well but I am reading on recommended diets and supplements that people have had success with. One scared me to death because I would have to give up bread and cheese and that just isn’t right. And it brings me to the third thing we discussed, cutting down on stress. The lack of cheese would stress me out a little I think. But all joking aside this disease is stressful and it comes with stresses. You have to worry about symptoms, you worry about burdening your family and you worry about the financial aspects of the disease, MS is expensive. Health care alone is costly add in making your home MS friendly and if you have to go on disability you take a cut in pay. That part stresses me out. There are days I just can’t do my job. I have stairs to worry about, typing can be difficult, concentrating and speaking. When the tremors get bad I can’t drive. But disability won’t pay the bills. I try not to think about it but if things don’t start to go in another direction it may be my only option. Those are just stresses related to the disease. Add in being divorce just under a year ago and all that goes with that. I need to be there for my kids and I don’t want anything to get in the way of that. But there are obstacles and I didn’t expect those. It is heart breaking that any of us have to deal with them but we do. The past week has been difficult and I hope that we can all get through this. But there are things that I may need to deal with that I wasn’t expecting and that scares me and it causes me stress. Because I have to make sure the kids don’t see I am stressed. I did my kick boxing last night trying to take out my angst on my imaginary component. I felt better, having the kiddos with me laughing at me while I was working out helped as well. Laughter is good medicine. And I am trying not to focus on the stressors and focus on the good medicine, laughter and pie. But stress happens. If I look stressed make me laugh, give me pie.

Week 18 on deck - Living with MS

I sat looking at my calendar and counted out how days turned into weeks turned into months. Thursday starts week 18 of MS symptoms that is four months. Four months of no control of my body in the middle of six really bad weeks. But I remain determined to get through this and I won’t let it beat me down. But I am tired and now I have new concerns and will see the doctor Thursday. I am trying not to dwell on the what ifs but there is a part of me that is just really tired. That part has woken up in the middle of the night crying a few times lately. I try to keep that part of me quiet but as this continues its voice gets louder and louder. I know it doesn’t make me weak, I have no problem with people knowing how I feel about this, I just don’t want this part of me to take me over. I found myself canceling plans I made because it was a bad day. I didn’t want people to see me and what was happening. I wound up alone listening to that voice and that was not a good place to be. But I am over that part I need to continue to live and if people can’t handle my slurred speech or uneven gate that is on them not me. These things don’t change who I am but giving into them does. I have to remind myself of this every day. And I have to remind myself to slow down. I am working so hard at being normal I forget that I have a medical condition that requires attention and rest. I had wanted to take more on at work and this past I realized given the uncertainty of my situation that wasn’t really feasible. I need to keep my life simple where I can. I shouldn’t be trying to be everything to everybody to prove a point. My life is good. I have a job, I have a nice place to live I have good family and friends. I have a successful craft business that I am lucky enough to still be able to do. So I don’t really need to be Wonder Woman though it would be cool. But I am happy with my life I just going through a little rough patch and I will get past this because of all that I have going for me. Whatever happens later this week with the doctor I will face with the same attitude I have now. You can’t control what happens only how you react to it. You deal with it you move on.

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.