Living With MS- Week One Victories!

Week one off my meds and a new way of eating is in the books. The first few days off my anxiety and allergy meds were a bit of a challenge. I took a very small dose of anxiety medication to help me with my night time restless brain that sometimes comes with MS. You may be absolutely exhausted but your brain doesn’t shut down at all. When I added my ten minute evening yoga routine and a cup of chamomile tea to my mix, I didn’t have any issues. Allergies. Well I was a drippy mess for the first four days. I read this article about natural ways to help with allergies. One of which was to have a teaspoon of local honey twice a day, and of course use saline nasal drops. The other was to change your diet which I had already done and add apple cider vinegar to a glass of water in the morning. Gross right? Add the honey you have to take anyway with 8 ounces of water and its life changing. So last week I gave up pasta, breads that weren’t high fiber, sugar, and soda, dairy for the most part, read meat and cut down to one glass of wine a week. This week no alcohol, cutting down to one cup of coffee and adding more tea therapy into my mix. I made a big pitcher of ginger lemon with probiotic tea which I drink a ten ounce glass on my way into work. I have a cup of green tea with my breakfast when I get to work and ice green tea with my lunch and iced peppermint herbal tea after lunch and chamomile tea before bed. The great thing about these teas they are actually good for you and aid in digestion and flushing out all the bad stuff. In this eight days I have lost three pounds. I still feel a little bloated from some of the meds but that will take longer than three days to clear out of my system. I am having some issues with my hands since I have been off my meds but that could be because of the warmer weather, MS tends to get bad when your body overheats. As much as I love to be outside when the sun is out I have to make sure I am not over doing it in the heat. Soon I will have to move my walks into the gym on the dreamill to stay regulated on really warm days. But today was a great to walk at lunch. I have incorporated a thirty minute lunch time walk into my day. And another thirty minutes in the evening if weather permits, if not I do my yoga for an hour. I have to make sure I stay active and focused. I have been religious about using MyFitness pal for more than three years to track my eating and exercise, I have been using more of the tools available lately like tracking my sleep. Sleep is the most important to wellbeing. My dying FitBit tracks my sleep as well. I have really been mindful that I get between 7-8 hours at least per night. I also have been mindful about how much TV I am watching. I was getting really bad about binge watching everything. Even though I was working out at least 30 minutes a day, I was sitting for way to long in the evening and on the weekends. I stopped turning the TV on at all on the weekends during the day last weekend. I listened to music instead which actually got me motivated to start my days activities earlier than normal. This Sunday before 8:30 am I had already made a pot of soup, had made my breakfasts and lunches for the week and started laundry. I didn’t sit back down that day until after 4 pm. Got in way over 15,000 steps yesterday. I have set my new goal at 12,000 per day that way I know I am getting up enough. If I need a little more motivation, I got my pool pass yesterday and I have to shop for a bathing suit this weekend. So week two started yesterday and hopefully it will bring on great new changes!

Living With MS- A great weekend

had the best weekend. I didn’t do anything to note other then check off a dozen items on a to-do list and enjoy two sunny days after our six month extended winter. I had time to reassess a few things now that am I working longer hours with ninety minutes of my day in a car. Over the past six months I have been struggling with my MS. I had to go back on medication and I hadn’t really been able to be as active as I had been. Hey I gained fifteen pounds between medication and a job where I sat, a lot! Last week I did this seven day “cleanse” if you will. I gave up sugar, red meat, bread, pasta, dairy (for the most part) and alcohol (except this weekend). I got at least a thirty minute walk in and made sure that I took time to relax. I started to feel remarkably better. Over the weekend I actually went for tow half hour walks, once in the morning and one in the evening. I did some toning and some yoga. I was relaxed and full of energy but there still was something not 100%. I started to read this booklet I got at the MS Walk. It was eating for MS which I have read about and tried but I wasn’t really committed to it. I then read an article about weight gain related to the medications I was on and how weight gain can actually make your symptoms worse. Well I looked at the last few months and the progression of symptoms and all the lights went off. Sunday I didn’t take my meds. I figured I would come off everything including vitamins and allergy meds, no pain relievers no chemicals of any type. I decided to continue my eating regime but added in some high fiber sour dough bread as it was recommended in what I read, it’s good for your gut and probiotics are part of MS wellness. Totally off cow’s milk based dairy and no alcohol for a while, that isn’t for the MS that is for the calories. My house is filled with good foods. I have set up a schedule to get my workouts back to where they were prior to this relapse. Baby steps of course but I will get there. Now that I have a steady job and a set weekly schedule I can be more structured. I can make time to look at other ways to handle my MS. I have been reading up on the CBD oil which I have now had a few people tell me I should try. I am considering but I think I want to clean the junk out of my body before I start on anything like that. It will take a week for some of it and a month for the rest. I am not looking for a quick fix, I am in this for the long haul. I may not be bikini ready for pool season like I have been but that’s okay. I can’t sweat the little stuff when I have to focus on the bigger picture which is my overall wellbeing. I am however hoping for more weekends like this where I have the balance of getting things accomplished and ability to relax. I think we all need those!

Living with MS- Next steps

I was sitting in an interview yesterday and they asked me the typical questions and I gave the typical answers. Then they asked me where I saw myself in five years. In the midst of a really bad bout of my MS that question almost brought me to tears. I answered “Hopefully in my forever job succeeding” out of habit. What I really thought in that moment was “I have no idea where I will be in five years”. I know that I may be in a wheelchair at some point or using a walker. I try not to dwell on those things because I am not there yet but when asked that question at the moment when you feel your body so out of control those thoughts are quite vivid. Yesterday I had to change what I was wearing because I couldn’t fasten the button on my pants or my shirt. I had to write down every thought I had on post it notes and put them in my purse and stick them to my phone in case I forgot what I needed to do or words I needed for the interview. Last night I went home exhausted. I needed to exercise but I was too physically and mentally tired to do so. I made dinner cutting my fingers twice as I prepared it I was trying not to become to frustrated with my hands that haven’t worked well in three weeks. I ate, made a cup of tea then I sat. I refused to cry. But I did think about that question, where will I be in five years. I realized that I have to think about that. I have children and I have responsibilities. I want to live every day as they come but I am at the point where I need to plan for the what ifs. It is time to say, I have a disability and I need to plan but not be overcome with what could happen to me. I would hope in the next five years that I could find a treatment to help me or hell maybe there will be a cure for MS. That is my hope. The reality is treatments take time. There is no overnight fix for anything. Patience and planning is part of life and reminding myself every day to have a life. I can’t stop living because of this disease. That is the first rule of the living with MS club, don’t forget to live. But we sometimes have to focus on the unpleasant side of the disease and I am there now. But it is okay because it’s a part of this and you have to accept the bad with the good. I have always said and I will always say, it isn’t what happens to you in life it is how you chose to handle it that makes you who you are. I will take this next step in my journey with much research and thoughtfulness. I don’t want a quick fix, I want the right fit for me. So when I am asked again where I see myself in five years I will answer “Where I need to be”.

Twenty Eight Days of Change-Planning

After a week of focusing on the good the bad and the ugly of my life I took the past seven days to plan. I took all those post it notes that were things I need to keep up with and I put them together. The first thing I did was budgeted my time. Wait you didn’t do your financial budget first? NOPE. To me time is more important because the time you have or don’t have can cost you money. For me I have to work a day job to pay the bills and I have my craft business on the side and I am trying to start a consulting firm to replace my day job. I can’t afford to know budget my time. When I lose track of time I lose money, I lose momentum and I can’t have that. So I sat down and wrote out my day, my week, my month. I wrote down all the little things I had to do, that I wanted to do and things I really shouldn’t be doing. Then I looked at how I could do them smarter. Instead of going to the grocery store every night. I started to use the shop and click options at stores. Some you pay for but it was worth it as I saved time. I am making a chore list for the girl child, so I don’t have to clean up her messes. I looked at commuting options so that instead of driving every day I can ride and craft, see where I am going with this? Once I had my time budgeted I could do my financial budget. It was actually scary given I am making almost half of what I was once was. But I crunched the numbers and I got everything to work out. No more lattes and fancy cheese for a while but it will all be worth it to reach my goals. I even budgeted my goals. Just like when you are on a diet you break that down in smaller increments so you feel successful with every step. I did this with my goals in post it notes of course. Yes one does say “buy fancy cheese again” but that is what goals are for right?

28 Days of Change- Focus

About three days into this twenty-eight-day adventure some things happened in my world that were rather unexpected. I didn’t want to stop what I was doing I just had to take a new approach on it. So I took five days to focus. Luckily the assignment I am currently working I have more than a little free time to take think time. Not everyone has that luxury and honestly I wish I didn’t right now but I am grateful for it. The first thing I needed to focus on was my situation and what were all the things I could do right now to keep me from freaking out about it. So I took a five mile walk and thought about what little good panicking was going to do me. And then I thought about options and solutions. And when I got home I wrote down my thoughts and made a to do list but made sure it wasn’t one list it was broken into smaller “doable” lists. So I used a stack of post it notes and put five items from my master list on each post it and enough room for notes if I needed to take further action on each task. I was able to complete fifteen tasks in my pj’s on a Monday evening and it lifted about twenty-five pounds off my shoulders. The next day I took care of a few more items and some had follow up steps so I moved those aside and pushed on and created a few more post it notes for other items I needed to focus on when I got to a point I could do that. I am now focusing on what I want to be when I grow up. I am thankful for the time at temp assignments because I am getting a feel for different office environments and looking at my skill set and what I have to offer and what I need to work on. I have applied for and interviewed for a few jobs I would have loved to have but didn’t but I was able to start to see why I didn’t get them. It’s so easy just to apply for every job out of desperation without actually looking at the job description and looking into the company. So I made some more lists. What do I want to do, what am I able to do, what are my strengths and weakness since that seems to be in every interview, and what atmosphere do I want to work in? I read a job description today where I had 90% of what they wanted but the 10% I didn’t wasn’t kind of key to what they were looking. I asked myself is this something I could learn and wanted to learn and express that to them in a cover letter? Once I did more research on the company I realized that it wasn’t really a place I would want to take money to learn that skill for. Did she just say that in her situation? Yes, yes I did. Again it goes back to applying for everything out of desperation. And it comes back down to focus. As I am closing down on my five days of focus I do feel more grounded and although I still have a lot of major work to do on my to do lists I think I have a good plan moving forward. And on another note seven days into this I have lost 3 lbs and cut down on my cheese intake. The dairy industry may take a hit this twenty-eight days. But 3M stock will be up from all the Post It Notes.

28 Days of Change

So far this year isn’t turning out the way I planned. When I left my job in October I had all these big ideas of what I was going to do and how things were going to be then I fell flat on my face. I have reached the panic point and caught myself making some not so good decisions. That is no way to live I can tell you that. So I decided it was time to start a mental detox if you will. Starting on February 1st I am going to focus on changing my situation and regaining some control over my life. I am starting with something I do have control over my health and well being. I have always said and truly believe if you take good care of yourself by eating well and exercising you can find so much focus.I have some of my best ideas on the dreadmill or taking a walk outside. I actually had to start carrying a small notebook with me to write things down. My MS brain doesn’t always allow me to remember long term. So goal one for the month of February is self health which will lead to goal two which is focus. I need to focus on what my wants and needs are. Putting my love of cheese and tater tots aside, I am talking about tangible wants and needs not edible. What do I want out of life? I want to make my business successful. I have just gone about it in the wrong way. My game plan was very flawed but I have been taking time while unemployed to educate myself by looking at successful small business owners and entrepreneurs. I am attending a work at home summit that I have to tell you has opened my eyes in so many ways. I filled an entire notebook in a day and a half. I still have four more days to go better get more notebooks. But I now know that my wants have to take care of my needs. I may want to be a business owner but can I afford that the way I want to do it? In this month I need to look at the how. How to make the want meet my needs. I realized when I left my actual job and started working temp assignments that I can no longer work in a regular office environment. It isn’t that I don’t want to it is that my body will no longer let me. As much as I hate to admit that my MS has reached that point it has. These temp assignments have been good as I have been able to have a break between assignments but the breaks mean no paychecks. That isn’t good. And that is why I am in a panic now. So I need to look at goal three which is a back up plan. Hmm can I get all this covered in 28 days? You betcha. It takes 28 days to make or break a habit. I don’t have any notions that in 28 days I will have all the answers but I will have a plan, a plan for change which I will take with me for the next twenty eights days and the twenty eight days after that until its time to revisit that plan.

The little things

At forty five I never thought in a two year period I would be divorced, diagnosed with MS and now for the most part unemployed and my former mister has put us in a financial pickle. And despite all this I am still happier then I have been in so long. Because I know things will work out the way they were meant to be and my life is mine. I have never been a things person I have always been an experience person. And in this past two years I have experienced things both good and bad that have helped me to grow as a person and realize what is truly important. Good experiences cause memories, memories don’t need batteries nor do they need to be upgraded with a new model. I would much rather have that then things. Not to say I don’t like a nice pair of shoes now and then, come on! But the endless memories of things I’ve done, seen etc. will always trump things. As 2017 thankfully leaves us I will go into 2018 in pursuit of as many experiences as the year brings.

No safety net required

The first thing I learned after I was diagnosed with MS was to live without a net. This week I put in my notice at work. No I don’t have another job lined up, I didn’t really have a plan but I knew it was the best thing for me. I had writer the letter the month before was asked to hold off until after my anniversary and eval. It was clear that the decision made a month before to make a new start was the right one. I updated the letter and turned it in ending my time here in four weeks. My manager asked me if I had something else lined up. I said no. He asked me if I was sure I wanted to do this given I didn’t have anything lined up then said he’d give me until Friday to make up my mind. By Wednesday night I started my next steps in my head. I wasn’t going to change my mind. As scary as the idea of potentially being unemployed is I have never felt so good about a decision I have made. I want to be my own boss. I have run my craft business on a small scale for five years. I think I can take it to the next level. I also have twenty five years of administrative experience which I would love to share, IE starting an administrative consulting firm. I can work anywhere to make money but I don’t just want to work to make money. The second thing I have learned since I was diagnosed with MS is that life is too short just to be a passenger you have to be the driver to actually live. So live I will. I am not saying the next few months will be easy but they will only be hard if I don’t stay focused. I am lucky because I have people in my world that will help me with guidance in areas I am unfamiliar with. I have a great network that I can look to for my craft business and admin business. I am excited to see where I can take this. I feel great about it. And hey if it doesn’t work I already know how to ask “would you like fries with that?” Here is to the next chapter hoping it is a long productive one.

One Year Living with MS

A year ago tomorrow my life was forever changed. I spent a day with a twelve inch needle being put into my spine and was put into an MRI for nearly 3 1 /2 hours. I had every blood test known to man just to be told something I already knew. But the words from the doctor’s mouth no matter how expected they were a blow I wasn’t ready for. I have shared my story over the past year and I have gotten strength from sharing. I have received strength from the continuous support of family, friends and acquaintances. I have had some rough patches here and there but nothing that I haven’t been able to overcome because I know I have so much to be grateful and one bad day won’t break me. As I go into the one year marker of my MS diagnosis I am facing new physical challenges. I am coming to the point that I will need to make a few really big life decisions. It wasn’t what I was expecting but life is full of surprises whether you want them or not. But I know what ever happens I will be okay. It will be different and probably difficult but easy is boring right? While my hands will let me type I will continue to share this journey I am forever grateful for those who are on it with me.

Living with MS-Little joyful things

In ten days I celebrate my 45th birthday. I had hoped for my birthday that I could say I was starting my 45th year in remission from my MS but I learned last week that wasn’t the case. I feel good and I was really hopeful that when I went in they would say no lesions. But the darn little buggers are still there. The doctor told me that he did notice I still had a light tremor and my speech is still slightly slurred. I was told I was just getting used to them. I knew my sight wouldn’t fully return in the left eye after three bouts of optic neuritis that was a given. I am okay with what he told me. Because I feel better. I am still hopeful that I will be in remission soon and hopefully for a long time. I just focus on the day to day and enjoy as much as I can. Saturday I laid in the grass at the park for a two hour nap in the sun. Sunday I enjoyed a Mother’s Day brunch and kick boxing with my daughter. I went to bed early and loved every minute of my nine hours of sleep! I woke up early and had an extra half hour to sit on the balcony and listen to the birds while I drank coffee. It is the little things in life that can bring the greatest joy. No I not in remission but my life is full of those little joyful things. So I go into my 45th year looking forward to the little joys and hope.

Living with MS-Walk a Mile in my Shoes

Someone posted on social media yesterday that 30% of Hoosiers have pre-existing conditions. To me that seemed low given the people I have in my circle. My circle is full of hard working people who never ask for handouts, that despite things they go through in their lives they give to others to better their lives. Yesterday’s vote was a slap in the face for myself and those like me. We work, we pay our bills, we don’t ask for anything but to be able to afford the care we need to deal with the health conditions we have. I was told last night that I needed to stop my pity party and support our leaders because they were doing what was best for our country. I in no way feel sorry for myself, I am pissed off at the leaders that have never had to walk a mile in the 30% of my fellow Hoosier’s shoes and the millions of other American’s that fall into this category. Better yet walk in my shoes with my bank account. So you can honestly know what it is like to be faced with the possibility that you cannot afford care for a disease you didn’t ask for. I doubt you would be able to walk ten steps let alone a full mile. I have seen the full medical bills before insurance kicks in and it makes me sick. I am thankful for the coverage I have now and for what I pay for it. But who knows what our companies will do if this passes. I only hope that each state will think about their 30%, 45% or more or less and think that we are more than dollar signs, we are voters. We are voters that can make or break you come next election. 30% may not be a big number but come voting time it is very big because you can add all the family members who vote to that 30% plus those who already were against the changes being made. Enjoy your short victory, I will see you when I walk a mile to the polls to make my vote next election.

Week 44 of MS Symptoms-No Meds, no dreads

I’ve been medication free for two weeks and I can honestly say I feel better than I have in a really long time. The only symptoms that I have been dealing with is the loss of vision in my left eye, hearing in my left ear and some minor brain fade and numbness. I haven’t had any tremors, no cramping in my legs, I can use both hands 90% of the time and no slurred speech. I have been able to go to the gym every day that I have wanted to and done what I have wanted to. The only issue I have had is being really tired but I chalk that up to my body trying to heal from the effects of the medications. My therapist said some of that may be my brain needing rest from all the changes I have went through in the past five months. I have been through a lot and sometimes I don’t realize that I need to take that time to slow down and assess what is going on. MS symptoms get worse when you are under stress. Although I try to stay very positive I have dealt with a great deal stress lately and it is starting to slow down and I am find my new grove if you will. I love having my daughter living with me but putting two strong will women in one small apartment there will be some issues. But we work through it. Eat a lot of pickles, talk a lot try to find common ground to keep the peace. I guess being 14 is tough these days but so is being nearly 45 dealing with a new lifestyle no one prepares for. We just figure things out as we go. I figure things out each day and grow stronger. I am hopeful that this new found energy is here with me for the long haul. I have to believe it is. And I still need people to walk with me April 22nd in Indy for the MS walk! Go TEAM JENN!

Week 42 of MS symptoms- Enough is enough!

I made a decision to stop the medication I was on for my MS. Ever since I have been on it I have not felt like myself. Add that too some persona stress I have had and the return of my optic neuritis and being on steroids, I was pretty much a mess. I am not coming off it forever but I think my body and mind needs a total reset. I am coming off the meds, going back to my previous eating and exercise routine and back to therapy. The medication was to prolong my remission times and since I haven’t gone into remission yet I really don’t think I am hurting anything. A month without the side effects would be like a vacation and I think I need that right now. It is so hard not to feel right in your own skin. I have done and said unforgivable things and not realized I have done it. I haven’t really slept well in seven weeks and Jenn on no sleep is not a good thing. I am not a pill person and I take eleven a day I feel like Alice in Wonderland “this one makes you an asshole and this one makes you feel like you are falling down that rabbit hole.” And none of them are working. So I will reset, renew and re-vibe. And with any luck this will put me in remission and I can restart the medication.

Week 40-Finding your light

I posted this to Facebook a year ago: “It was a year ago this week, March 11th to be exact that my life changed forever. I woke up like any other day. I made my coffee, I walked the dogs, I fed the kids then got ready for work. I went to the office and did my walk through and said good morning to everyone on the plant floor. I made my way to everyone and said good morning, my last good morning was to Karen who was inspecting. She said good morning then she paused and looked at me. I asked if she was okay. She said she was but she didn’t think I was. “Jennifer your light is gone. For the past year and a half I have watched you walk around and say good morning every day. You always smile and you are always kind but every day there is less and less joy in your face and that little light inside you grew more and more dim. I never wanted to say anything before but I have to tell you now your light is gone. I think you should talk to someone.” I stood for a moment choking back tears then nodded. I went into the office and I picked up a phone and I called the 1 800 number for our EAP without even a hesitation, the woman on the other end asked how she could help me today and I broke down after I told her what Karen had said to me. This woman who knew me a year and half had observed something I knew deep down to be true, something that no one else could tell me in fear of making me angry or hurting me. This woman that I respected for her ability to make observations and her shared wisdom had given me the push I needed. That day started a year of healing. I faced things I didn’t want to face. I did things I didn’t want to do but I knew it was the only way to get where I needed to be. The me that was 235 pounds, angry and sad was not the me I once was. This was not my future it was a prison of my unhappiness, the unhappiness I chose to live in. But I started the journey away from that place that day. In the year that followed I lost 77 pounds, but what I gained was more valuable. I gained respect for myself. I learned that to be able to take care of others you have to care for yourself. I learned that joy comes from the simplest of things, a smile, a laugh, a hug at just the right moment. I learned that bad things happen and instead of letting them consume you and make you unhappy, you take them as a life lesson.” In the year that followed this I am down 95 pounds which is wonderful. I was diagnosed with MS which isn’t wonderful but the lessons I learned in choosing how I handled situations has helped me to overcome so much. I found my light again by finding myself and surrounding myself with good people and good things.

Week 37-May cause blurred vision

Today I woke up and I knew I need to make some unexpected changes in my life in order to deal with my MS. I have made other changes in order to function but I am to the point where I need to make changes to live. For two weeks I have suffered with vertigo and once again loss of sight in my left due to optic neuritis. I did my best to deal with it but dealing wasn’t enough. I went back in for another MRI and three new lesions were found. Instead of a hospital stay I was allowed to stay home and take 30 pills a a time on top of my other medications for three days. I am not a pill popper so that was quite a task I will tell you. The side effects of the steroids increased the side effects of my other meds and I have been one hot mess, literally as one of the side effects makes my skin hot and turn red. It is a good thing red is my color. I started prednisone on Monday to help with the symptoms. It’s funny I am losing my sight and the first side effect “may cause blurred vision”. The truth is I am losing my sight. I was told once again that the damage to my left optic nerve is not reversible and I could be legally blind in my left eye within a years’ time. I am a very visual person as a crafter. The thought of having my eye taken from me is something I am having a hard time with. I thought I could deal with it better but how do you deal with something like this? Not only will I lose my sight but I have to relearn how to live to deal with it. My job is not one that I will be able to do with one eye. Driving isn’t something that you should do with one eye. I live in a second floor apartment. I live with my daughter now but she won’t always be there. I know I will come up with a game plan and be ready for when this happens. But I am pissed now, Maybe I am wrong to be sad and angry since I will only lose one eye instead of both, like I should be grateful. But I am angry because there is nothing that I could have done to prevent this. This disease just takes what it wants and I try to do what I can to deal with it. I did everything I could to prevent my symptoms from coming back or getting worse but it isn’t working. So I have to find another way. Maybe if I get angry at the disease for a while that approach will work. There is nothing quite like a woman on steroids mad at her own body. But I don’t want to be angry, I don’t want to be sad. I just want to be at peace in my skin again.

35 weeks-Are you scared?

Are you scared? I guess in the past seven months I haven’t really thought much about that question until my father asked me yesterday. I have been trying to stay positive and focus on dealing with all the changes in my life. I am not sure I would use fear to explain how I feel about the things I am going through, I would use indifferent. At 35 weeks of symptoms with little signs of slowing I think feeling indifferent is reasonable. I think there is little reason to be afraid or angry at this point. The past few weeks have been less then pleasant but I have found ways to deal with them the best I can. Humor and hugs seem to help. Somedays I just have to give in to being tired and rest. Other days I need to keep busy even when I am tired. The only thing I am truly afraid of at this point is losing the ability to do the things that give me escape from all this. I haven’t been able to go to the gym in a few weeks. But I was able to go for short walks and I had my crafting. That helped to keep me occupied during this rough patch but now my hands are starting to fail me a bit. I just don’t know what I would do if I lost my hands rights now. But I can’t focus on that. I am working through it and believing that this is just temporary. Before I know it I will be back on the treadmill and my hands will be what they were. I have to believe that.

32 Weeks-New Worries

Its week 32 of symptoms. I have added arthritis and loss of mobility in my right hand to my MS bag of tricks. The loss of my hands is almost unbearable. I mean crafting is my therapy when my body decides to be stupid with everything else I could sit and create beautiful things and feel better. Now that ability comes and goes. My therapy is now painful at times. I am trying to see this as a temporary thing just another hurdle I have to jump. My medication to prolong remissions makes me so sick. I am told this is temporary they said my symptoms wouldn’t all that that long too but I think 32 weeks is a long time. And now on top of my body failing me I have to worry about our new president and what that will mean to me and many like me who have pre-existing conditions. I have worked since I was 9 years old I served my country. I have never been unemployed for more than 30 days in the past twenty years. I have a disease that cannot be prevented. There is no cure and the cure that is being looked at is one that Republicans and conservatives will not even consider. There is a chance that myself and millions like me will be without health insurance. Trump has said he will see that doesn’t happen but he has said a lot of things to get elected and he and many like him were quick to jump on getting ACA repealed. Make America Great Again but only for those who aren’t sick, who aren’t poor, who don’t disagree with the views of the office. I guess the his America isn’t the same America we advertise on the Statue of Liberty: “Give me your tired, your poor, Your huddled masses yearning to breathe free, The wretched refuse of your teeming shore. Send these, the homeless, tempest-tossed to me, I lift my lamp beside the golden door!” Instead of fixing a flawed healthcare he will build walls between people and the necessities they need for a good life. This isn’t progress this is regression. A multitude of steps back in time pulling us further and further away from greatness. And it will not stop with healthcare. I really hope I am wrong but his actions over the past year should give us an indication of what we have to look forward to for the next four years. Buckle up buttercups we may be in for a bumpy ride.

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.