We went to Vegas for about a day and a half this weekend. My husband’s daughter was going to be there for a week and we wanted to visit with her.
The last time we went, I had just been diagnosed with MS. I was still learning how to walk again since my lower half of my body wasn’t cooperating. In 2012, I told my husband, with any luck, I would go into remission and never have to use a walker in Vegas again.
As we packed for this quick (extremely economical) trip, I told my husband we needed to pack my cane, walker and wheelchair. Funny how essential baby items like strollers and portable play pens have been replaced my assistive walking devises for a 31 year old. Those three items pretty much took up my entire trunk. I told him, I’d rather have all three than leave one behind and need it. He agreed since the weather report said it would be at least 105*. Heat diminishes my mobility and energy.
I ended up needing to be pushed around in my wheelchair pretty much the whole time we were there. The rest of the time I needed my walker. I used the cane in our room.
I’m not mad I have MS. I’m not mad that at such a young age, I need help to get around. I try to embrace it because I am aware every single day that these lesions could be tutors instead.
My hope with sharing my posts with MS, is that maybe in some small way, I can help others. It is also therapeutic for me to use words for me to process my thoughts.
That being said, what infuriates me is that I have to fight for my disability since I’m not disabled enough in their minds. How many of you need to be escorted around places by others because you can’t stand or walk without help anymore? How often do you start to fall over for no obvious reason? If I was here illegally I would have access to all the services I need. Shelter, food, and medical care.
We have never done Vegas on such a shoestring budget. My not working while we wait to see a judge has taken a huge hit on our bank accounts. Our emergency savings account is long gone. My 401k is Long gone. We are routinely behind on bills because without income from me we can’t pay them. California pretty much requires two incomes.
I know you all hear me bitch about my situation, but do you realize, you are all one medical emergency away from loosing the life you have worked so hard to build and maintain?
In two years we have gone from middle class to working poor (just above poverty level.)
When I sought out government services to help get us through a rough patch recently, we didn’t qualify. They don’t take into consideration your actual situation. Why you are in the situation you are in. They punch you in to a system and then say no based on an out dated calculations.
What programs help the people in my situation? People who worked hard and did the right thing their whole life’s but who is now in a situation that is out of their control. Add insult to medical diagnosis.
I am fortunate to have parents who can pitch in when I need it (which is all the time now) But what happens to the people who don’t have family help? Who can’t access government services for whatever idiot excuse the government uses. There is a whole group of disabled people falling through the cracks and no one seems to notice. I wrote my two senators about it; ten days later I got two automated responses.
In order to stretch our pennies, I started couponing. I’ve started stockpiling household items that I can get incredibly cheap or free so I can start donating those items to our church’s food bank. Because let me tell you when you are down to three dollars left in your account and pay day is still days away, you still need toilet paper and laundry detergent, much less a $5 “donation” to get food from a food bank.
When my husband was pushing me down Freemont St I saw a man in a wheelchair. His sign said : “Have MS. Can’t walk and now homeless. God Bless.” I had no change to give him because we took only enough money for food since this trip to Vegas was about visiting with family not about gambling and partying.
In a different life I could be that man.
PS – if you get the Sunday paper and don’t coupon, I would be happy to take coupons off your hands so I can donate more of these items.