Learning to live on a much smaller income wasn't easy.
I was diagnosed in 2000. Prior to being diagnosed I worked all of the time. I was living by myself; my kids had their own lives going on and I wasn't a regular part of them. In the early 1990s is when my boys came back into my life, because they needed help. My oldest and his family moved in with me, and then my daughter-in-law left, taking my grandson with her. My son lived with me from then on.
During this time I had three jobs. I worked most of the time because I didn't like being home. I owned a bar in late 80s and was a police officer prior to that. I married in the early 90s and made a career change to the medical field. Then in ‘92 I went to pharmacy tech schooling. Three years later I received my teaching credentials for my field. At this time I worked one full-time and two part-time jobs.
I had saved up five weeks’ vacation time, so I went to Mexico to meet family I hadn't seen since I was three years old. While I was there I started to get chest pain and went to a hospital, not understanding that much Spanish. I was diagnosed with a stroke, and so I cut my trip short and made a doctors appointment as soon as I could.
Tests were done on my heart and everything was fine, so an MRI was next. I was talking to a friend two days before the appointment, and she said it was like talking to a three year old. She met me at the doctor’s office for the results of the MRI. I was told I had MS, which made no sense to me, and it wasn’t explained to me what that meant.
I cried for three days, but then I got off my pity pot, went to a library and checked out four books about MS. Then I called my brother to give him the news. I was diagnosed in early March, was no longer working by the end of May, and by June I was on long-term disability, working just eight hours a month.
Learning to live on a much smaller income wasn't easy.
Prior to my trip to Mexico I worked all the time – then, just like that, nothing. My income was cut to a quarter of what I was used to. My lifestyle changed in what seemed like overnight. Learning to live on a much smaller income wasn't easy.
I have to pick and choose which functions I go to and how long I stay because my night vision is awful, no matter how many times my glasses are changed. I needed to stop driving on my own because I was almost hit by a semi, which I didn't see at all.
The last seven years I have been living partly the Native American way. Mother Earth is as sacred as I am and I take pride in us both. This world is important for all things that we need. Mother Earth gives us all our food, she gives water to quench our thirst and to water the plants and animals we eat.
My older brother has been there for me for whatever I need him for. I would forget how to get home from the store, and he'd ask for cross streets and get me home from there. Getting lost, sometimes forgetting where my apartment was, was scary and frustrating, and I'd sit in my car crying when I finally got home.
Now my sister helps me by going just about everywhere with me. I moved two buildings from her to make it easier for the both of us. And of course my sons have been through a lot with me. I'm lucky to have caring kids.
I used to use a cane and I no longer need to after therapy for my balance.
I have three sons, nine grandchildren, and two great grandchildren. It's been 15 years since I was diagnosed, and I still have bad days but the good days, well, I make them great days and do something special just for me. I've slowed down, but I give everything I do the old college try!
Every day is different, your challenges will be different morning, noon and night.
Enjoy each moment to the max. YOU are a strong person – draw on your inner strength. Every day is different; your challenges will be different morning, noon and night. Take your time, breathe, and one day you'll be at a point where you can laugh and joke about what happens.
Take it slow, talk to someone close to you or one of us who live day by day. It's okay to cry, just try not to get overwhelmed. You’re not alone – there are many of us cheering you on. It's hard for others to know what you're feeling, how you're feeling, because this is an invisible disease and it's hard for others to believe things they can't see. It does get easier but it may take a long while. Remember, you are still you, just take things slow and learn all you can about MS. You may have MS, but MS doesn’t have you – that's your goal.
I have gone through so many changes in the last 15 years. My common thread for each day has been to keep God in my life. I take one day at a time, and sometimes it's one hour at a time.
My life has always been one of giving and helping, and most of the time I get used and taken advantage of. Sometimes others think because of my MS that I don't know what's going on around me, but I know myself, my world, and my abilities. I know I'm being used, but others will get what's coming to them.
I know what's in my future – one breath, one minute, one hour. Anything more than that I don't know. I have days when I'm not doing well and the time drags by, when I can't do anything for myself much less for others. I also have days when I can run around and do so much that I run out of things to do by noon.
If you don't do for yourself, take care of yourself, then you won't be able to do for others. If the day comes and you're asked for help or something that's time consuming, don't feel guilty to say no, or that you’re not up to it right now – you are the only one who knows how you feel.
The statement, "I have MS but MS doesn't have me," is true. You are the only one who has the final say. Always do what's right for YOU.
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