My last day of work was January 21, 2016. That was almost 9 months ago and I still follow a Monday through Friday week. Probably because my daughter is still in school and I wake up with her every morning so come Saturday and Sunday I can sleep later. I can’t imagine working. I’m so tired on certain days from doing so little the idea of what I used to do blows me away. how I ever did it? This week was a really tough week to me. I had to cold to start off the week which really didn’t even last long but still knocked me out. I had a date on Monday night holiday dinner Tuesday and Wednesday night dinner with my dad and stepmom Thursday night and tonight I have a date again. Most people would argue that’s nothing but for me that’s a really tough week. Tomorrow I need to take off. My body has to shut down. My body has to rest. It sounds so silly because most of the afternoon with exception of one which I had a nervous break during I really did rest during the day until I had to go out. However just going out each night and coming home late is all it takes to knock me out enough. I need to have a day where I really do nothing for the entire day. Possibly even two days. These are the parts to having multiple sclerosis that people don’t always understand because these are the parts that people can’t feel or see or understand because they have nothing that can compare it to. Empathy is a very tough emotion sympathy is easier and even sympathy people only extend to an extent. Afterwhile when you’re always canceling on plans or changing plans people eventually get annoyed. People who don’t have it, people who don’t feel what you feel, or people that don’t go through what you go through on a daily basis 24 hours a day seven days a week 365 days a year they can never know truly what you to go through. People are nice they want to understand they want to get it but I even had someone say to me but the building so close the parking lot is right there 5, 10, 15 steps it doesn’t matter sometimes if my body’s tired those five steps for me to feel like 600 steps. The steps could be so exhausting to take.
I subscribed to a lot of people’s blogs with fibromyalgia or lupus or Crohn’s disease the daily battle of the everyday life that we all deal with should win us awards but instead we fight the government for our benefits or the insurance for none covered items that would make our world maybe a touch easier. Where is the sympathy or empathy from these people? Where is the help for us? My job was to bill and collect from all insurance companies including Medicare and Medicaid for a nursing home. My mother makes the running joke that it’s still a full-time job for me dealing with my insurance for my benefits for my personal needs. I’m constantly fighting with my insurance company. I read blogs like this all the time. Where is our help? I didn’t ask for MS these people didn’t ask for colitis. I never asked to be out of work at 44 years old. I didn’t ask to have trouble walking to the bathroom at 44 years old either or driving or picking something up or writing a letter. But where is our help? Why am I constantly fighting? Do you know how much Medicaid paid for an elder patient living in a nursing home each month? Over $6600. Do you know how much private patient pays for the same room? Over $14,000. Yes a tremendous difference between the two but even $6600 that are governments pay times that times 12 and times that by the number of people just in the nursing home receiving the benefit times the number of nursing homes you’re talking about a astronomical amount of money. And I’m fighting my insurance which is also Medicaid for my psychiatrist bill of $300. that will be negotiated down to about $80 when all is said and done. It’s really an amazing system that we run here. And now we have an election of that I don’t even have words for. Now that I’m on Social Security disability i’m considered lower-class. I couldn’t even get federal aid help from my daughter for her college because of course they go back to 2015 tax return before I went out on disability and even on a salary less than $70,000 by myself no husband involved they still felt I can contribute $7500 a year to her college. Sigh it’s a crazy world we live in. I’m sure anybody with any disability would agree we never asked for this I’d give it back to you any day and go back to work. It would be nice if on top of everything else I’m dealing with I didn’t have to deal with the bureaucracy of insurance and our government is well.