My Chronic Life

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.

This Saturday is a very important day for me and for my church. We are having our annual Single Mothers Appreciation Day where we pamper the mothers, provide childcare, lunch, chair massages and more. We also get to share the Gospel with them and their children. The women who attend love it. We have a lot of women return year after year.

The problem for me is that I am not feeling well. I’m getting really bad stomach cramps that I’ve had before which caused me to be sick for days. I needed an antibiotic and couldn’t eat much or move around.

My friend and I run this ministry. I can’t be sick! I’m praying that this is just a fluke and it will be over soon. I have a feeling that this may be have been caused by something that I did by accident this morning.

I take two pills before breakfast and dinner for my stomach. This morning I think I took those pills twice! I’m praying that this mistake will run it’s course and be over with very soon. I take so many medications and even though I keep them in pill sorters I often get mixed up about what I’ve taken or didn’t take.

If I tell my doctor I sure hope he won’t send me to drug rehab thinking I did this on purpose! But believe me these aren’t the kind of pills that anyone would take as a “recreational drug”.

I don’t want to be a doctor, nurse, medical tech or anyone who works in the medical field now. I was happy when I was able to work as Social Worker for a home health agency way back when, but things have changed a lot since then and we have our government and health insurance companies to thank for that.

You see when I was able to work outside my home, Medicare actually paid for medical care that allowed a doctor to stay in the examining room with you for a while. S/He would be able to ask you a lot of questions about your health condition. S/He would be able to help you prevent medical conditions from occurring. You could stay in the hospital when you had surgery, especially if you were elderly and frail and had no one to care for you at home. You could get home health care if you lived alone and couldn’t for any reason, do your own insulin injections. The agency could provide a home health aid for you to help you with your personal care if you needed assistance, a social worker if you were depressed or dealing with stress and/or a nurse to check on your wound care id you were diabetic, or if you needed IV treatment and were too sick to go out daily to get it from a clinic.

Now you’re lucky if you spend more than 10 minutes with your doctor. There’s more out-patient surgeries that used to be done in hospital. If you can’t bathe yourself, too bad, you can either try sponge baths, hire someone or not bathe. If you’re sick and need IV treatments you need to find transportation to the clinic that opens at 6AM for patients. So sorry if you’re weak from the infection.

It’s a sad state of how things are now. It must an awful feeling for many in the medical field who are really concerned about patient care to know that their hands are tied in so many things they want to do.

I’m blessed because I have doctors that care and go above and beyond and because of the type of health insurance I have. I see how difficult it is for others especially the elderly, people without insurance, people with multiple health problems and those who have Medicare or a Medicare HMO and for anyone who has Medicaid.

I pray that our next president will do something to make changes in health care in the US.