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.

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.