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!

There have been some times when I can’t shut my brain off no matter how hard I try. Even medication doesn’t do the trick. I’ve felt anxiety so bad that I’ve felt like tearing off my skin. I’m no fun to be around that’s for sure! It’s an awful feeling and when it happens I pray and try my best to stay calm. If it gets really bad then it’s time to call the doctor to see if I can increase my medications.

I’ve been doing very well lately. I haven’t had any terrible anxiety attacks that my medication or other forms of easing my stress haven’t been able to handle. I’ve been doing something different lately and wanted to share this with you.

When I begin to feel anxious, before it gets out of hand, I turn off anything that is distracting. I used to believe that using the TV or the computer would help me but I’ve learned that this just adds to feeling stress. Instead I listen to music that soothes me. It can be Christian contemporary music, or instrumental relaxation music but whatever it is I listen to it on my headset. I either use a CD player or another type of electronics like my MP3 player.

I think that shutting my mind down by focusing on one thing only has helped me greatly. The ability to hear only the music or even some Bible recordings is a new venture for me. I’m thrilled that it’s been working.

Some people with chronic illnesses especially ones that are of the autoimmune type suffer from allergies. Common allergens found in the home are dust mites, pet dander, mold spores and cockroaches. Since our homes are often kept closed up in hot and cold weather we can be more susceptible to having allergic reactions and even asthma.

It is not easy to avoid these or other allergens in a home. Some things that can be done is to use protective coverings over mattresses and pillows, use HEPA filters in your air conditioning vents and vacuum cleaners and using proper ventilation techniques that help prevent moisture and mold. Using green products in your home for people that have chemical sensitivities is another way to keep your home healthy.

What are some things you do in your home to prevent your allergies from worsening?

Although I have Fibromyalgia, Myasthenia Gravis and Anemia and am so tired all the time, I often have trouble falling asleep or staying asleep. Sometimes it’s due to the chronic pain I have, sometimes it’s anxiety, sometimes I get my days and nights mixed up because I nap so frequently during the day and sometimes it’s that I’m over tired.

Some suggestions to help you sleep and possibly get a more restorative sleep are below:

• Avoid caffeine.
• Keep a regular sleep schedule
• Drink warm milk before sleeping
• Don’t eat a large meal before sleeping
• Keep your bed for sleeping or sex only. If you can’t fall asleep get out of bed, try to read or listen to some soft music. Don’t toss and turn.
• Be sure that your bed, mattress and pillows are comfortable. Don’t just choose any mattress because it’s on sale. Research. Try out the various types of platform beds, pillows including body pillows.
• Keep your bedroom dark and quiet
• Use relaxation techniques
• Check with your doctor or pharmacist to see if there are any medications that you take that may be keeping you awake
• Try to avoid long naps during the day
• If your bed partner snores or there is other noise that keeps you awake, try ear plugs

Hopefully these suggestions will help you in your goal to seek a good night’s sleep.

When we are easily fatigued, weak, unsteady on our feet or using an assistive device such as a wheelchair, walker or powerchair we need to be sure of keeping our homes safe.

1. Check for any type of tripping hazards such as loose throw rugs, electrical cords and items in walking areas. Remove these.
2. If you are weak and/or have an unsteady gait, don’t use the tub or shower when home alone. If that’s not possible, keep a cordless phone nearby in case of a fall. Install grab bars and raised commode seats if needed.
3. Be sure that the water temperature is not set too high to avoid scalding.
4. Use a shower seat and hose and don’t use bath oils or lotions in the shower or bath.
5. To save energy, place one foot in bathroom cabinets while leaning over Kohler sinks to do your washing up.
6. Have night lights available so that when waking at night walk ways are lit up.
7. Keep some important lists handy - the address and phone number of the home (you can forget things when you’re in a panic), information on medications and doctors’ phone numbers (sometimes called a File of Life), and contact information for family members.

It is important to a person’s well being to be able to remain at home when ill. A person can feel better about their life and may recover or not have flare ups as often if they are not in an unfamiliar environment.

February is National Children’s Dental Health Month. Dental health is something that needs to begin early, as early as before your baby even has his first tooth erupt. You can start by using a soft, damp, clean washcloth to rub your baby’s gums gently. As her teeth come in do the same thing and then move on to a soft toothbrush. It is important to discuss the use of toothpaste and flouride with your pediatrician or child’s dentist. Never put a baby to bed with a bottle unless it’s filled with water.

Having a healthy mouth is important as cavities and gum disease can begin early and cause tooth loss and pain. There was a study discussed by The School of Dentistry at the University of Michigan and done by pediatric dentistry graduate student Sara L. Filstrup that showed children who had cavities in their baby teeth had many more problems than toothaches. They couldn’t sleep, play well with other children and concentrate at school. After having their cavities filled, four weeks later things had changed dramatically for the positive.

Most pediatricians and dentists suggest setting your child’s first dental appointment at age one. It’s best for the dentist to check your child’s mouth before any issues occur and for your child to begin to get used to the dentist office.

There are a lot of free activities to download to share with your children. Click here for them. This can help educate you and your children too and show them that dental care is fun too.