Homebound with no disability payments
Some of you may know I live in Oklahoma. The weather is crazy, but it's one of the things I love about it. It's easy to be an armchair storm chaser here with the live coverage of deadly tornadoes. As the season approaches, so does the ugly Hidradenitis Suppurativa (HS) The weather has gone from cold to hot as Hades in the span of two days! I took a couple of hours last Saturday to hop on the riding lawn mower and mow the backyard. Picked up a little trash here and there. I painted an old dresser I had. By 2:00pm I was done! Exhausted, but done.
I had only sweat a little, I took plenty of breaks in between and a good long shower afterwards. The next morning reality set in. I could barely move and my arm had kept me up most of the night. I was grateful for the numbness that occurred off and on for a reprieve from the pain. I started feeling the dreadful symptoms of boils forming. I knew this would happen. It always does.
Here I am on a Tuesday morning, laid up with multiple boils. Pain shooting through each of them as they multiply in size. I just purchased some Emuaid cream and soap a couple of months ago. I don't normally buy "miracle" cures, but nothing has really worked so far and I was desperate. I have been applying it like crazy. I was really hoping it would help from getting the cysts in the first place. Nope. Let's see how it goes fighting the monsters growing inside me.
As back office support, I don't physically make money for our business. I just keep the books and make sure we get paid. I have recently started my own business with my art projects. It took months to put it together and start a web site. www.grammysmercantile.com These are projects I can do while sitting and not putting too much strain on my body. I was very excited to get published and get started making my contribution to our household income (which recently plummeted). I even got my husband and daughter involved. We hyped ourselves up for the big reveal! Crickets. Lots of likes and shares on Facebook, but nothing.
Great. Let's add failure to the list. I haven't given up, I did finally make one sale. (Of course it was to my Aunt, probably a pity purchase.)
Well, I'll get to the point. I have NEVER wanted charity of any kind. My husband and I pride ourselves in taking care of ourselves and responsibilities. I feel like as long as I am capable of doing something, I'll make it. But the fact is, we do rely solely on my husband's income. If he doesn't work, we don't make money, simple as that. The overwhelming guilt of not being able to work and bring in income has really taken it's toll on what is left of my self esteem.
I've tried many avenues to make money or get on the path for it, and my body shoots the idea down. I will have flares that last for weeks. This results in the opposite of motivation. Depression sets in, again. A kick in the gut. I'm a strong woman, but after getting hit so many times, your body just says "stay down, don't get up, if you do, you will get hit again!"
So after many years, I decided to do some research on disability. It doesn't look very promising. My state does not recognize Fibromyalgia as a disease. Go figure. I have not been hospitalized for my HS. I have had a couple of ER visits, but nothing that would be considered substantial to getting disability. You see, I do my suffering at home, on a daily basis. I have a migraine, I medicate and go to bed. I have a HS break out, I soak in a tub, medicate, cry, all in the comfort of my home. I hurt too bad to walk. I sit in my chair with a heating pad. If my Fibromyalgia gets bad, I go to bed. I cry myself to sleep more times than I would like to admit.
I try to remind myself of others who have it worse off than me. I think of third world countries. There have to be people like me who live there and don't even have a bed to sleep in or food to eat. I pray daily. But more than anything, I do the best I can. That's really all I can expect from myself. Some days I throw a temper tantrum when no one is looking and have my very own pity party. Sounds silly, but it does release some of the anxiety I feel on a daily basis.
Here I sit, once again, trying to figure out what the rest of my life has in store for me. There are no cures for what I have. No anniversary of being HS, or FMS free. No plans to make for "when I feel better". But mainly, "once I kick this, I'll be able to live a normal life and work. Contribute to the world and hold up my part of the marital bargain." It's just not going to happen.
It's a vicious cycle. The End.
I had only sweat a little, I took plenty of breaks in between and a good long shower afterwards. The next morning reality set in. I could barely move and my arm had kept me up most of the night. I was grateful for the numbness that occurred off and on for a reprieve from the pain. I started feeling the dreadful symptoms of boils forming. I knew this would happen. It always does.
Here I am on a Tuesday morning, laid up with multiple boils. Pain shooting through each of them as they multiply in size. I just purchased some Emuaid cream and soap a couple of months ago. I don't normally buy "miracle" cures, but nothing has really worked so far and I was desperate. I have been applying it like crazy. I was really hoping it would help from getting the cysts in the first place. Nope. Let's see how it goes fighting the monsters growing inside me.
As back office support, I don't physically make money for our business. I just keep the books and make sure we get paid. I have recently started my own business with my art projects. It took months to put it together and start a web site. www.grammysmercantile.com These are projects I can do while sitting and not putting too much strain on my body. I was very excited to get published and get started making my contribution to our household income (which recently plummeted). I even got my husband and daughter involved. We hyped ourselves up for the big reveal! Crickets. Lots of likes and shares on Facebook, but nothing.
Great. Let's add failure to the list. I haven't given up, I did finally make one sale. (Of course it was to my Aunt, probably a pity purchase.)
Well, I'll get to the point. I have NEVER wanted charity of any kind. My husband and I pride ourselves in taking care of ourselves and responsibilities. I feel like as long as I am capable of doing something, I'll make it. But the fact is, we do rely solely on my husband's income. If he doesn't work, we don't make money, simple as that. The overwhelming guilt of not being able to work and bring in income has really taken it's toll on what is left of my self esteem.
I've tried many avenues to make money or get on the path for it, and my body shoots the idea down. I will have flares that last for weeks. This results in the opposite of motivation. Depression sets in, again. A kick in the gut. I'm a strong woman, but after getting hit so many times, your body just says "stay down, don't get up, if you do, you will get hit again!"
So after many years, I decided to do some research on disability. It doesn't look very promising. My state does not recognize Fibromyalgia as a disease. Go figure. I have not been hospitalized for my HS. I have had a couple of ER visits, but nothing that would be considered substantial to getting disability. You see, I do my suffering at home, on a daily basis. I have a migraine, I medicate and go to bed. I have a HS break out, I soak in a tub, medicate, cry, all in the comfort of my home. I hurt too bad to walk. I sit in my chair with a heating pad. If my Fibromyalgia gets bad, I go to bed. I cry myself to sleep more times than I would like to admit.
I try to remind myself of others who have it worse off than me. I think of third world countries. There have to be people like me who live there and don't even have a bed to sleep in or food to eat. I pray daily. But more than anything, I do the best I can. That's really all I can expect from myself. Some days I throw a temper tantrum when no one is looking and have my very own pity party. Sounds silly, but it does release some of the anxiety I feel on a daily basis.
Here I sit, once again, trying to figure out what the rest of my life has in store for me. There are no cures for what I have. No anniversary of being HS, or FMS free. No plans to make for "when I feel better". But mainly, "once I kick this, I'll be able to live a normal life and work. Contribute to the world and hold up my part of the marital bargain." It's just not going to happen.
It's a vicious cycle. The End.
Comments
Post a Comment