My Chronic Life

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.

It was one of those brain foggy days yesterday and so I forgot to post about Fibromyagia Awareness Day. It was held on May 12th. There were many different ways people took part in this event.

Some used the suggestion from the National Fibromyalgia Association to ask people to take on the Clothespin Challenge. That’s where you put a clothespin on your finger and leave it on as long as you can. When you are feeling the pain of that clothespin, think of the pain that people with Fibro go through every day. You can take that pin off but those of us with this chronic illness can’t. Some asked people to donate a set amount of money for each minute they kept the pin on.

Others took part in the Walk of FAME (Fibromayagia Awareness Means Everything).

You can still do something! You can help spread the word about this disease, make a donation  to the NFA or place a link to the NFA on your blog or website.

If you are doing any type of fundraiser for Fibromyalgia please let me know and I’ll be happy to post your links here.

Sjogren’s Syndrome is a very expensive illness. Although I am on a prescription medication for my dry eyes called Restasis, I still use artificial tears without preservatives in individual ampules. They are over the counter so our health insurance doesn’t cover them. I also use ointment for my eyes at night and a special toothpaste. Another thing I have to do is go to the dentist every 4 months as Sjogren’s causes me to have a dry mouth.

When you have to spend money on medical supplies and medical procedures on a constant basis you are always trying to find the best buy possible. I scour the newspapers and online for coupons. I get a lot of health information through snail mail and sometimes I get rebates or coupons that way.

I can’t look for cheap products, but the ones that work. That changes every so often. So one brand is “my brand” for a while. That brand becomes a household name so my family knows to look for sales and coupons.

I’d much rather be trying to save money on shoes but that’s life!

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!

Why not share your plans for Lupus Awareness Month or Day, which is May 10th? I know many women with Lupus and I want to help out in any way that I can to spread the news. This can help not only with more knowledge about this disease but also help to raise money for research, treatments and early diagnosis.

Please feel free to let me know if you are running a charity event of any kind. I’ll be happy to post about it here on this blog.

Lupus is a chronic illness that is autoimmune in nature. The inflammation caused by Lupus attacks many organs and systems of the body. Since this disease affects various body systems there are many symptoms which can make it difficult to diagnose. Lupus also comes and goes with episodes called “flares” or “flare ups”.

From the Mayo Clinic, here is the information on the symptoms of Lupus:

The signs and symptoms of lupus that you experience will depend on which body systems are affected by the disease. But, in general, lupus signs and symptoms may include:

* Fatigue
* Fever
* Weight loss or gain
* Joint pain, stiffness and swelling
* Butterfly-shaped rash (malar rash) on the face that covers the cheeks and bridge of the nose
* Skin lesions that appear or worsen with sun exposure
* Mouth sores
* Fingers and toes that turn white or blue when exposed to cold or during stressful periods (Raynaud’s phenomenon)
* Shortness of breath
* Chest pain
* Dry eyes
* Easy bruising
* Anxiety
* Depression
* Memory loss

Since it is difficult to diagnose, but at the same time having Lupus without being treated for it can cause organ damage and other serious health problems, awareness about Lupus is vital.

You can take a screening test from the Lupus Foundation of America. Please answer these questions and talk to your doctor about the outcome.