When people find out all that I have to deal with they always ask me how I do it…and this was before adding Multiple Sclerosis to the list. The honest truth is, I don’t know. Things aren’t easy and some days it’s a roller coaster ride that I would rather not be on. I didn’t buy a ticket for the ride and yet here I am. There are days that at the end of the day I am emotionally and mentally spent. I want nothing more than sleep to consume me and never have to wake up. Other days I feel like our family is almost normal.

Overall, I have adapted over the years. I wasn’t handed everything at once. I had a chance to adapt to each thing that came along, including my own health issues and my husbands, before the next one came along. You learn to manage things. This means using your smart phone for smart things, like the calendar app to record doctors appointments where you aren’t double booking them. You can’t be at two doctor offices in two different parts of the county. It also means picking and choosing your battles.

Often things don’t go as planned and it can get really really bad, as we experienced this past week. Everything leading up to our 15 year old daughter’s MS diagnosis devastated us financially. We are lucky that we have health insurance through my husbands employer but even with that insurance, through all the trips to the ER and specialists we have racked up more than $1100 in copays in under three months. I have looked at the medical bills and it could be a lot worse, but still, $1100 is a lot of money. $1100 means the difference between paying doctors bills where we can insure that our daughter gets the medical care that she needs from the specialists that she needs to see and have the tests run that need to be run and making car payments over those three months.  $40 every time we walk in the door to a specialist, and currently my daughter has two and we have appointments with two more in the next two weeks. $100 every time we have needed to go to the ER. There were 5 of those trips and that doesn’t count the trips to our primary care doctor and drugs related to her diagnosis or the fact that the insurance company decided they weren’t going to pay for the contrast agent for her MRI.

Long story short, our car was repossessed this past week. The bank gave us 10 days to raise the money. It’s not been easy but we have raised the money that we need for the car along with our normal utilities. Still need to scrape together gas money where my husband can get to and from work and we can get to and from doctors appointments as well as cover medical expenses. We have no family that we can borrow money from so we have been on our own through this. There has been a lot of stress (we need two vehicles in order to make doctors appointments while my husband is at work), a lot of heart ache and stress that my family doesn’t need. It has made my daughter feel horrible about having MS and she feels like a burden. We don’t see this as the case. The series of events that happened falls under “Shit happens and we will adjust”. Feeling sorry for yourself doesn’t accomplish anything.  You do what you have to do and move on. This has meant things like payday loans and loans against our van title. Everything that we have of value is sitting in the local pawn shop.  This means a friend of ours picked up our grocery bill for us and for that I will be forever grateful. He has watched as my daughter is fine one day and in a wheelchair the next because she can’t use her legs. He has watched as a second child of mine has ended up in a wheelchair because of some coordination problem that doctors have not been able to name.  He’s watched what we have gone through over the last year. It’s a nice relief to have a friend that is actually going to help and not be judgmental. The “help” that I have received in the past has come from people who felt that they were well-meaning (and I use that term very loosely since these people have been more hypocritical than anything, they are just blind to their own faults and short comings) and decided that help comes in the form of social services knocking on the door looking for a reason to prove that they can do a better job of providing for my children while they sit in foster care.

In Star Wars Obi-Wan made the comment, “Your perspective determines your view”. It took me a long time to understand that comment, but now that I do I can say that it’s true. People have not walked in my shoes, they can not understand my life. They probably don’t want to because it means stepping into a world that they don’t understand. They don’t understand what it’s like to live with autism, what it’s like to be partially disabled and having to take care of a large family with many special needs with the only help being your husband who is gone 12+ hours a day due to work and commute time, who has his own medical issues. We spent the first real vacation time he took at Christmas this past year going back and forth to doctors because of a knee injury sustained at work. Things are what they are and we do our best. In fact, 99% of the time we do a damn good job of balancing everything and making sure everyone’s needs are met.

It often gets lonely walking the path that life has laid out for me. That which doesn’t kill us makes us stronger. I should be able to take on the Incredible Hulk by now. Everything that I have been through has helped form who I am but I don’t let any of it define me.

These are the thing we don’t talk about. When you are in a store and the cashier says “How are you today” they are making small talk. They really don’t care how you are so you just say “fine” and go on with your life when you really long for someone that you can dump on, just to get out all of your frustrations of the day where you can feel better. No one want to hear that you have been to two different doctors that day, that your kid is now on the 6th different medication in 3 months because things aren’t working as they should, that some idiot ran a red light and you were nearly in a traffic accident of that the weather is causing havoc on your body and it’s painful to do anything, yet you still aren’t able to go home because you still have three more errands to run.

So how do I do it? I suck it all up…the loneliness, the aggravation, the frustration, the lack of sleep and everything else that makes up my ball of wax and do what needs to be done because my family needs me to do these things.

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