Skip to main content

Posts

Showing posts with the label finance Struggles

Embracing Change: Our Journey from a 1800 Sq Ft House to a 42 Ft Camper to Care for Dad

 When life throws us a curveball, we learn how to catch it. Our family’s journey from living in a spacious 1800 square foot house to a cozy 42-foot camper is one of those moments. This decision, driven by love,  necessity, and the desire to provide the best care for my wife’s father who lives with dementia, marks a significant chapter in our lives. This is our story of adaptation, resilience, and finding joy in unexpected places. As my father-in-law’s dementia progresses, he needs constant care. My mother-in-law can no longer manage on her own, and at the same time, I lose my job. It feels like God is guiding us to make a change. Moving to the family farm and living in a camper becomes the best option to provide the care he needs and support my mother-in-law. We park our trailer at the base of the hill, while my father-in-law lives in a house just up the hill from us. Moving from a large house to a camper means serious downsizing. We make tough decisions about what to keep and what to

Disability is not a vacation

 One of the things I do not like talking about, but is real to Patients with Dystonia is the Financial problems that come along with the disease. This problem brought about my depression, anxiety, and feeling of worthlessness because I could no longer provide for my family. It is not a permanent vacation. I want to make that clear!   Believe me, the last thing that I wanted to do was rely on the government to provide for me and my family, and I never would have guessed at 42 I would be disabled and not able to work. I have been asked why I cannot work from home, and the answer is an easy one, because I do not know what days I could work and what days I could not work. I can have a decent day one day and a bad day the next, or I can go from having a good hour to my brain starting to misfire and the rest of the day I cannot do much of anything, and sometimes one moment I am normal and the next I am having a Dystonic storm it cannot be predicted, and getting people to understand this

Roller Coaster Ride

    I haven't posted in awhile because I have been on a roller coaster of emotional, financial, physical, and mental issues that all play a part in how a person feels Physically, and that is weather or not they have Dystonia.      There is always the question am I going to be able to get out of be tomorrow, and if I do what am I going to be able to do. Some days I can do more than others I just never know. I can feel perfectly fine one moment and the next feel terrible, and that my friend is how the disease works, and when the bad days come all you can do is lay in bed while everyone around you works. Just this week my wife had to feed me because my arms were to week to lift the fajita. sounds weird huh? Yeah, when your wife has to feed you because you cannot feed yourself it is a weird situation, at least for me because I like to be able to feed myself, but when your arms are twisting around your back it gets a little difficult, and believe me it took awhile for me ever to all

This Is My Reality

Imagine if you will that in the blink of an eye everything you knew changed. Everything you could do every exercise you enjoyed, every sport you Loved to play, and your job, that you say you hate, but really you don't want SSDI, was taken away. Put yourself there for a minute or even a second. Picture what your life would be like, the drastic changes that would have to be made the financial cuts of things you enjoyed were no longer affordable. If you played an instrument you may not be able to play it with this disease there is no end to what it can effect, or a sport you loved to play, no longer even an option, and all in a span of about 12 hours. This is my life.   This is the reality for every Dystonia patient and if they are old enough to remember they remember when everything changed. for me it was October 16, 2016. I started like a normal day except I had ear pain. I went to work thinking nothing of it assuming that it was one of my ear infections that I usually once or

Trying to recover

We are now finally in the process of trying to get everything cleaned up after the recent flooding removed us from our room in the basement. It is now dry enough to start trying to seal the concrete again and get it ready to move back into. My wife cannot wait, she does not like clutter, but we have a basement full of clutter upstairs. A friend from our church has been kind enough to help us out, and through various donations we have enough to begin    We began the process this weekend. I should not say we because it has been so hot I haven't been able to do much. I am still having the problem with my skin feeling on fire, but that will get better, but probably never go away. because of this we have been going to bed earlier and the new medicine allows me to wake up earlier so I can enjoy a little bit of the day before the heat sets in.     We got the brick and mortar picked up so we can brick the outside of the finished part of the basement and seal it, that is where most of t