Week 30-Never ask Why Me.

Week 30 of symptoms starts today and it is a hum dinger. My hands are not really cooperating and I could barely talk by the time I got to work. I couldn’t remember the word pallet today as I was trying to talk to a co-worker about a safety issue. I called it a wood thingy you stacked stuff on. He patted my shoulder and smiled not to mock me but to let me know he knew what was going on and then he told me he would take care of it and I shouldn’t worry. Losing words is a worry. Sometimes I think I will lose them for good. But I know that worry right now is why I lost my words today. Stress has caused what I am going through right now and the past week has been very stressful. It started with a phone call at the end of last year. I was just sitting there thinking to myself that I had survived 2016 the year that could be known as the worse year in my life but 2016 wasn’t done with me yet. The phone rang and the woman on the other end said she was from the woman’s center at our hospital. I had had my annual mammogram so I just thought she was going to tell me how fibrous my breasts were like they did every year. She said there had been a change in my breast and they needed to do another mammogram and an ultra sound. I had had a small lump over the summer but the doc said it was probably a cyst. I told the woman that and she said she would call my doctor after she got off the phone with me. My doctor called the next morning I went in for an examination and the lump had grown. She said it was probably nothing but I would have another mammogram, an ultra sound and biopsy. I go in this Saturday. I went home and I sat and for a moment I felt so overwhelmed that I let self-pity take over. I asked why? Why me? What was it that I did to deserve all this? I know I say I am a bad ass did that piss off the power that be so much they had to test that theory to see what all I can take? Well they should know I can take a lot. And with that that moment of self-pity left me. Because like self-pity this lump in my breast is more than likely nothing more than a benign useless thing that just causes irritation and pain that isn’t needed in my life. I may lose my words now and then and the use of my hands but I will never lose my ability to face whatever challenge I am faced with. I have too much to live for and I plan on living it happy with my head held high.

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.