My Chronic Life

Hubby is walking away from me with a look of disgust on his face. He just finished telling me that I need to get to bed early. He knows that I’m worried about my appointment tomorrow with the Kidney specialist. He knows I didn’t sleep last night at all and so I slept in today plus took a nap. He knows I’ve been sitting at the computer too long this evening.

I know he’s right on every count, but do I listen? I’m here posting on my blog instead of getting ready for bed. I’m as stubborn as an ox, a ram, a donkey.

But being stubborn when you have chronic autoimmune diseases and complications is a good thing. It keeps me from giving up when times are tough. It keeps me searching for good doctors when I know the doctor I have isn’t helping me. It keeps me researching my symptoms and being assertive with my medical care.

Those of us who are in the chronic illness group need to be stubborn at times.

If you’ve been thinking about blogging, already have a blog but desperately need another one because you’re so addicted that one isn’t enough, or you want a blog on your own domain, get ready for some important info.

Go on over to my other blog, Brain Foggles and check out my contest.

You have a chance to win an SEO optimized Wordpress Blog with one year of hosting, a customized header, your choice of theme, support and technical assistance, plugins, keyword search and help creating a niche. The value is about $125. This is open to everyone, not just those in the USA. The end date for this is May 30th. Don’t wait!

This is a perfect way for anyone with health issues to earn money from home.

I know many chronically ill people who are unable to leave their homes whenever they want due to pain, medication side effects, being unable to drive and just not feeling well. When this happens loneliness can set in. If you are young and your peers are working and have a family of their own it can be difficult for them to make time to visit you. You may not feel well enough for visitors. You may be embarrassed of how your house looks because you’re not able to keep it clean.

Whatever the reasons, being almost homebound or totally homebound is quite common. In the Chronic Illness Support Group I run, this is a very big issue for our members. We have members who are no longer able to come to meetings because of their health issues. I try to keep in touch with them though.

There’s a trend now of people with disABILITIES and chronic illnesses using a computer and the internet to connect with the outside world. Just look around and see how many blogs are authored by people with medical conditions, how many websites and message boards are made for us too.

Having the right equipment for your computer is a must. If you have arthritis you may need an ergonomic keyboard. If you are paralyzed, you may need a head pointer to type. There are so many examples of technology that make using your computer easier or even open up the means of computer usage.

Many of these products are expensive. Some government agencies and non-profit groups provide the technology. If you are looking to buy something for yourself shop around and even tried refurbished. You may be able to find something among used cisco parts, or other companies that sell used equipment if new is too expensive. Be sure to check for a warranty, the company’s customer service ability to work with you and other types of feedback from buyers.

Being online can help you feel that you are a part of society, especially a section of society that understands you.

I will be doing something that I dread, something that I fear, something that makes me very anxious. I’ll be a guest on Blog Talk Radio on May 9th at 8 PM EST. I’m the type of person that likes to hide behind my blog and my computer. It’s easy for me to write. It’s difficult for me to get out from the curtains and show another side of me.

I don’t like to be in the spotlight and doing anything that makes me feel that way gets me nervous. I do know that my friend Danna Crawford, The Power Selling Mom will make the radio show easy for me though. She’s very professional and is not only a store owner on eBay, a Power Seller and a marketing genius, she’s an eBay Education Specialist too. She teaches classes in her home, online and and at Central Florida Community College too. I know that she’ll ease my fears and make me feel welcome.

Please join us to learn about eBay, blogging, how I’ve become a disability advocate and much more!

I’ve read about work at home jobs for people with disabilities. There are many possibilities out there like selling on eBay, blogging, being a virtual assistant, selling term insurance, telemarketing and much more.

I’ve posted about this before here so I hope you’ll take a look. I’m learning about more opportunities and know you will too.

Remember that keeping active when you’re sick or disabled can help lessen Depression, keep your mind off of your physical problems and help you to gain confidence in yourself.

Why is it that when you become chronically ill that all of your family and friends immediately become doctors and researchers? I get so sick and tired of people (most of the time, well-meaning) telling me how I can be cured or how I need to change my diet, water, cleaning supplies, etc. etc….

I know that they mean well but it really does get annoying. The worst is when people tell you that you shouldn’t listen to your doctor or take a medication that is working. Yes we know there are side effects of prescription medications, but there are side effects of eating fast food, smoking, driving without your seatbelt, etc. We don’t butt into your lives, so let us tell you when we need advice.

I don’t mind when someone finds some information and asks me if I’d like to see if, or emails me a link. The best thing to do after that though is to leave it alone, don’t ask me about it again so I won’t have to tell you that I can’t take that medication or that it’s been tried already or that I hate to eat liver! Let me do my thing. I’ll ask you if I need some ideas or help researching, OK?

This is a continuing series which began with this post about the stages of grief and continued with a post on “Denial” , “Anger“ , “Bargaining“ and “Depression“. Looking at the diagnosis of a Chronic Illness in the framework of the stages of grief we’ll now look at the last stage which is Acceptance.

Accepting a chronic illness can take a long time. You may switch back and forth between the other stages even after you’ve reached acceptance. I do that quite often. Although I have accepted my health condition and can honestly say that it has been a blessing to me, I still get angry and depressed at times. That happens when I have a flare up or learn that my condition is getting worse for example. Sometimes it gets so that I want to pack up my Zero Halliburton luggage and run away. But what good would that do?

If you are seeking acceptance then you’re doing the right thing! If you realize that the other stages are keeping you stuck, you’ve made your first step. I’ll post more about how to reach acceptance in another post, so please stay tuned.

Please feel free to comment here about how you’re doing on your road to acceptance. I’d be happy to use your story of acceptance in my next blog post.

If you have a chronic illness or a disABILITY it is quite possible that you may not be able to work. I was in that position when I was terribly sick from the five autoimmune diseases I have plus anemia. The anemia was so bad that I had to get Iron through an IV on a weekly basis.

Now that I have the major chronic illness, Myasthenia Gravis under some control and I no longer am anemic that badly I work from home. I only work a few hours a day and if I’m not well I don’t work at all.

I’ve had to learn many things about working from home as a professional blogger. One of the most important things is marketing. I am a member of many social networks online and have placed links to my blogs every where I can.

Another way to market yourself is by using business cards. Professional bloggers hand them out to friends and family, to fellow bloggers at conventions and of course to advertisers. I learned about a site that not only helps you create your own business card but a logo design too.

Branding is also helpful in marketing. You want people to recognize you by an image or photo. Having a logo and business cards that incorporate that logo kills two birds with one stone.

The site logoyes.com was simple to use. It has a demo video to get you started if you need some extra help with the easy to follow directions. The whole process took me about 5 minutes to complete. It would have been shorter but I kept changing my mind about the logo because there were so many choices. I’m fickle, what can I say?

The finished product looks so professional. I was very pleased with my work, OK the site’s work. Here’s a look at what I would go with as this is a health blog:

If there’s a way for me to promote my favorite non-profit, DOUA I do it. I search the internet high and low for places to spread the word about this fine organization. For example on this post I was able to share information on DOUA. When I read about the latest Blog Battle Royale held by Izea I knew this was a great opportunity to not only support the Disabled Online Users Association but a chance to raise some very needed funds too.

My post on DOUA led to new members joining as students. That’s another goal of mine - to inform people who need the services of this non-profit. I also have a link to it on my blogrolls here and on my other blog. One of my goals for this blog is to be an advocate for people with disABILITIES. Providing this resource fits in perfectly with my blog’s theme.

DOUA is an organization for people with any type of disABILITY. It is totally free. The goal is to teach people to use the internet to earn money, especially by selling on eBay. I’ve been fortunate enough to find it at a time when I was at my lowest, feeling like I had lost my ability to do anything worthwhile. I was told I could no longer work and I was almost homebound.

The Disabled Online Users Association gave me the tools I needed to sell items on eBay and to gain back my self-confidence. In their training center I got support and made friends. I am now a mentor at DOUA. I am able to help others who are starting out. I also attempt to find volunteers and sponsors. So being a part of my first Blog Battle Royale can accomplish many things.

To make the mission of DOUA easy to understand, here’s a quote from Marjie Smith, Founder and Executive Director, “Our goal at DOUA is to help the differently-abled become self-sufficient and independent. If you’re disabled and would like to start your own online business, we can help.”

I posted a video but little else this morning about Brian Sterner, the man who is a quadripalegic and was abused in a Tampa Prison. Now that I’m feeling a little better I wanted to take the time to write about this utterly disgusting act committed by a Sheriff’s Deputy.

Just to review, Brian Sterner was arrested on January 29th for a traffic violation. He is paralyzed from the waist down and has limited mobility of his arms and hands also. He is able to drive. After being brought into the Orient Jail in Tampa, Florida he was asked to stand up while being booked. When he said that he couldn’t he was dumped out of his wheelchair onto the floor. This was caught on surveillence video and has been seen around the world on TV and on the internet.

Just today Hillsborough County deputy Charlette Marshall-Jones, 44 was charged with abusing a disabled person. Sheriff David Gee apologized to Mr. Sterner personally and has placed Sgt. Gary Hinson, 51, Cpl. Steven Dickey, 45 and Cpl. Decondra Williams, 36 on administrative leave pending an investigation.

I hope that any of the deputies involved will be charged and/or terminated from their positions. I did see a video on one of the local news stations that showed a deputy who saw the incident walk away with a smile on his face. He was not seen in the beginning of the video where this tragedy takes place. He walks very close to the camera and his face is visible.

I’ve read that all bookings of persons with disabilities are going to be viewed to determine if other acts of abuse or neglect have taken place. I’m grateful for Hillsborough Sherrif Gee has acted swiftly in this case. His apology to Mr. Sterner and his speaking out to the media has made somewhat of a dent in the public disgrace that now hangs over the department.

Please let’s make some headway for Mr. Sterner who has suffered from this incident. Post about this on your blog. Share the video. We can make a difference by stating that we will not allow people with disabilities to be treated with such cruelty.