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.

June is Myasthenia Gravis Awareness month. This is very important month for me as I have had this rare neuromuscular disease for a little over five years now.

Myasthenia Gravis or MG means “grave weakness”. It is an automimmune disease that affects the voluntary muscles of the body. The most common symptom of MG is ptosis which is a drooping eyelid or eyelids. That is how MG started with me. It can also cause double vision and other visual problems. For many people this is the extent of what they will have as MG symptoms. This is occular MG.

For others like me, other parts of the body are affected. This is then called generalized Myasthenia Gravis. Facial, neck, arm, trunk and the muscles that control chewing, swallowing and even breathing can be affected. I have had all of these symptoms but the most problematic only occur rarely. I also have general muscle weakness, fatigue and poor stamina.

I am doing what I can to promote this rare disease because it is believed that there are people that have it but are not properly diagnosed. Because there are treatments that work, it is so important to see your doctor if you have any symptoms listed here.

I’m promoting this on my blogs, website, Squidoo lenses, on Facebook and by writing letters and shipping boxes of information from the Myasthenia Gravis Foundation of America. Please help spread the word about MG.

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.

I’m still the same me but I get tired and cranky too often. I forget words and names. My voice sounds scratchy a lot of the time. I have bruises from getting injections or bumping into things. I listen to you teach me something but in a few minutes I need you to teach me again. I walk slowly. I hurt a lot all the time. I don’t go out as often as I’d like. I try not to, but I end up taking a nap almost every day.

I get short of breath from doing little things. I feel dizzy or weak sometimes and I have to sit down. I can’t walk long distances. When I say I need to take my meds, I mean it. I have trouble swallowing sometimes so I really can’t talk on the phone when I’m eating my meals. I take a long time to swallow my pills. I get frustrated, sad or angry for things you don’t understand.

But it’s still me - funny, talking too much, smiling a lot, wanting to help out, loving hugs, being odd, being myself. Thanks for sticking with me my friends! I love you for it.

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?

I’ve had the honor to be a guest blogger on Fighting Fatigue, which is an all inclusive health blog. This blog began to be exclusively about Chronic Fatigue Syndrome, Fibromyalgia and Interstitial Cystitis. As Sandy continued to write she expanded her subjects to include other health issues. She is an advocate, pure and simple. She goes through life everyday with symptoms that are difficult to live with, yet she tries to help others through her informative, empathic writing.

My guest blogging post is about Sjogren’s Symptom. Sandy had previously provided many links to websites, support groups, blogs and books. Her lists are comprehensive. A lot of research goes into each post she writes. Please take the time to visit my post and her entire blog.

There is a difference between brain fog and memory loss. Brain Fog is related to chronic illnesses such as Fibromyalgia, Sjogren’s Syndrome, ME/CFS, etc. It’s also related to lack of minerals or vitamins, some prescription medications and some forms of chemotherapy.

Brain Fog feels like you are confused and forgetful. You may not be able to do remember words easily. You may feel “spaced out” or that you’re in the clouds. You have difficulty keeping on task. Simple tasks that you were able to do easily such as add numbers become difficult. With Brain Fog or because of it you may feel sad or depressed.

Memory Loss is permanent and progressively gets worse. One day you can’t remember where your keys are or what a KVM is. As your memory loss gets worse you can’t remember your own family member’s names or the directions to your home. You begin to lose cognitive functioning of all kinds. Memory Loss is often related to Alzheimer’s Disease, Alcoholism, Dementia, Stroke, HIV, Brain Tumors, etc. This is a much more serious problem.

If you have any type of problems with your memory please see a physician.

Having Sjogren’s Syndrome causes many symptoms. One of them is dry mouth which in turn can cause dental problems. I go to the dentist every 4 months to have my teeth cleaned to prevent tooth decay. Our health insurance has turned down my dentist’s request for the one extra cleaning per year even though it’s necessary.

If money is an issue check your newspaper or mailings that come to your home for coupon codes for dental clinics. This can save you money as well as your teeth.

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?