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.