Making Changes

I recently made the difficult decision to not return to work. I put a lot of years into school and work to be able to have a job I love, working with kids and families. I hope to be able to return to work at some point. I’ve taken the past couple months off to try to see if I could find a leg I could wear and get stronger. What I learned was that my body is not able to do that. My brain still thought I could do everything. When I was working I would push through the pain every day which caused me to have to take so many pain medications. I would also use up few good hours of energy so I had nothing positive left to give my family. I would sometimes dread the nights the kids had sports because I hurt so much that I couldn’t imagine how I would make it through the entire night. I  have learned to listen to more to my body and plan for more resting time which has allowed me to take a lot less pain medications and actually get to enjoy my family and their activities.

Before my amputation I didn’t have pain every single day for years at a time. Now every morning I wake up it is instantly there or why I woke up. Some days are better than others but I still have pain throughout the day and night. I have spasms in the end of my leg that bring me to tears that, come out of no where and doesn’t stop until it feels like it.  I’ve realized that I don’t have a lot of control about my pain. My providers also don’t have a lot of options for me other than medications, supplements, trying another new liner and leg, coping skills and of course prayer. Even though I had times that were difficult with my foot it was only for a couples weeks at a time or I couldn’t do everything I wanted to do.For many years I was still able to play volleyball, go bowling, carry my kids, clean my house, go shopping and usually work as many hours as I wanted to. I have now had to completely change my life. Before I had to rest sometimes but now I need to rest everyday.  I have to get up to get something or go somewhere I am constantly thinking about how I will get there. I haven’t walked unassisted in over a year and haven’t been able to wear a leg for more than a couple hours in 7 months. I have had to modify how I live and depend on others a lot.

This whole experience has opened my eyes up to injustices and barriers that I never had to look at when I had my foot. What I have learned to rely on is my faith, family, friends and my voice. I know that God has shown me that I need this break and that I have faith in Him that he will continue to lead me down the path He wants for me. It has brought me to a path of advocating for others, educating and sharing my story. I hope by doing this it will help show others living with disabilities that we need to all work together to make changes.

Businesses need to step up and make more changes because every year there are going to be more and more people living with a disability. If they don’t start making changes now they are going to be losing out on a ton of revenue from those of us living with a disability. Collaborating with others, sharing information and stories can be so powerful. It is amazing the changes that can be made when you can make the step to put your story out there.

I hope it helps change people’s perception and treatment of people living with disabilities. There are people in the world that are quick to make judgements and comments  to people with a disability if they don’t fit what their perception of what being disabled looks like. I have dealt with this since I had my foot injury. Even now I get dirty looks when I pull into the handicapped stall and want to tell them to just hold on because when I get out and you see that I am missing half my leg then you won’t have to look at me like that anymore and may even feel bad for how you were looking at me. People living with disabilities get stared at a lot. Some days it’s easier to deal with than others. It is hard on my daughter especially to watch all of the people that stare at me throughout the day. I’m usually trying to make sure I don’t fall down or run into anyone so I don’t always notice it as much. Kids are typically good about it. They look very curiously or in shock and will often times come up and ask what happened. I tell them a short version and they say something like, “Oh, I’m sorry” or “OK” and move on. I always thank them for asking. Some adults will act this way but more often than not they will try to quick sneak a peek, which is actually more obvious and I actually notice that more. When I was able to wear my leg and had pants on it was more difficult to see why I was disabled so I would get asked often if I sprained my ankle or hurt my knee. Just as a recommendation if you choose to ask someone else or comment why they are on crutches, limping or even in a wheelchair be prepared for the answer. It can turn super awkward super quick if you say the wrong thing.

Just because you see someone with chronic pain smiling doesn’t mean they aren’t in pain. It could be that they are having a “good” day or that they are really good at masking it and don’t want others to constantly worry about them. Just because people take pain medications doesn’t mean that they are drug addicts or that they are part of the opioid epidemic. Most people with chronic pain wish they didn’t have to  take any medications at all but if they do many are on a pain contract. They have to have their medications counted at every appointment and can’t take any more medication that they are prescribed and their counts be off or they run the risk of not being able to get their medications anymore.

People living with chronic pain and disabilities want to be able to do all of the “life responsibilities” like go to work, play with their kids and not have to ask for help with things. It makes it hard sometimes to not be envious of people that can use their bodies whenever they want to and can choose whether they want to play with their kids, go to work, shopping, or even to the bathroom.That is why it was a difficult decision to not go back to work for me. I know though that if I rest during the day then I can do more with my family and for my family without having to take so much medication. It’s mentally and physically exhausting living like this so even though it was hard and scary I had to trust that it is the right thing to do.

I have also realized that life is too short to not live it. This has forced me to make changes our priorities in our home life. Since my amputation we would often say things like “When mom feels better we will… or maybe next year mom will feel better and we can do…” Now we honestly don’t know if mom will ever feel better so we have to figure out how can we navigate life with mom not feeling good. It means having a scooter at home and one that can go in the car, having to check with places to see if they are handicapped accessible, figuring out how and where to rest, driving less, having more pillows in the vehicles and making sure that if my body is hurting that I rest and not just push through it. People may judge but we finally got to go to another state to watch the Brewers play. It was a lot of extra work making sure that everything was in place, I had to take naps when I wanted to be out exploring or laying down when I wanted to be up but we had so much fun. It felt so good to be at a baseball game again because we hadn’t been to one since my amputation and we used to go to a couple a year. We got to visit with family and a friend and for a long weekend forget about the stresses that we usually have to deal with.

Now that I know I need to rest everyday and being that I have had to be in a scooter or on crutches for so long, I have also learned that I will not be able to accomplish what everyone else can do. Instead I do the best I can, choose to not give up and I continue to have hope that I will walk again someday. It may not be here on this earth but someday I will walk again and be pain free.

I have changed my faith and become closer with God than ever before. I thank God everyday for the blessings he has given me like my husband, children, family, friends, a house to live in, cars to drive and food to eat. On top of that I always thank Him for helping me connect with my fellow pain/disability warriors that He has put in my life so we can share our stories and struggles and we can relate to what we deal with. I thank Him that it’s me going through this and not my children and that I am so blessed to not be fighting for my life. I pray for strength and comfort to get through the pain each day, for patience with others and the wisdom to follow what His plan is for me while I am here. I also pray for others that are struggling that they find comfort and support from Him and that they are not alone.

My family has also had to make a lot of changes in their lives. Jason already has the burden of providing and now it rests solely on his shoulders. He and the kids do so much for me every day and some days have to do way more than most husbands and kids their age have to do. I hope they know how much I truly appreciate even the smallest things and that I love them more than they will ever know.

Thank you to all of you that continue to send prayers, encouraging messages, call to check on me and still ask me to do things, even if I end up having to say no or modify the plans in someway.  I hope it inspires others to make changes and continue to reach out to their friends and family members living with a disability. Finally, thank you to all of the new people I have met along this journey and I look forward to seeing what kind of changes we can make together in this world.

 

 

 

 

 

 

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