June is the month that the United States sets aside as APS Awareness Month. APS stands for Antiphospholipid Antibody Syndrome. It is also known as APLS or APL in the US or Hughes Syndrome or Sticky Blood in the United Kingdom.

APS is an autoimmune disease

in which the body recognizes certain normal components of blood and/or cell membranes as foreign substances and produces antibodies against them. Patients with these antibodies may experience blood clots, including heart attacks and strokes, and miscarriages. APS may occur in people with systemic lupus erythematosus, other autoimmune diseases, or in otherwise healthy individuals.

(from APS Foundation of America)

Symptoms: Blood clots, heart attacks, strokes in young people. Pregnancy symptoms include, miscarriages in early pregnancy, loss of baby after 13 weeks, small birth weight, placental abruption and a small placenta, and HELLP - hemolysis (breakdown of red blood cells), elevated liver tests and low platelets. Low platlet count, found by blood work.

Diagnosis - If you don’t have a low platlet count, it is often difficult to diagnose APS because of the many various symptoms.

Treatment - Keep weight and cholesterol levels low. Stop or don’t start smoking and try to keep active. If you have clots or deep vein thrombosis, you will most likely be put on a blood thinner. If you are attempting to become pregnant, you may take low dose aspirin.

To learn more about APS, please visit the APS Foundation of America. You can also listen to to a recording on an APS Focus Interview.

Since April is Sjogren’s Syndrome Awareness Month, I thought I’d write a little about what it’s like to live with this disease.

• My Diagnosis: I began complaining of dry eyes and a very dry mouth to my Rheumatologist shortly after being diagnosed with Fibromyalgia. I was having other health problems at the time but although my blood work showed a high ANA, nothing could be determined. I also was already diagnosed with Myasthenia Gravis, Ulcerative Colitis and Anemia at that time. When he say my tongue he was shocked.  He recommended that I visit an ENT to get a diagnosis and an Opthamologist. The ENT refused to do a lip biopsy because he was concerned about my healing. The Opthamologist saw how  dry my eyes were. We tried OTC artificial tears first. When they did nothing to relieve the dryness, he inserted tear duct plugs. Within 2 months both doctors decided to diagnos me with Sjogren’s without the blood work because I had the hallmark symptoms of this disease.
• My Treatment: I am now using Restastis, have two tear duct plugs in each eye (this varies as my dry eyes can get better at times), use OTC artificial tears, gel at night and take prescription form of Folic Acid. I can’t eat spicy foods at all and drink a lot of water every day. I see the dental hygienist 3 times per year and the dentist twice. I go to a dermatologist 3 times a year partly because of my severely dry skin. I wear sunglasses when ever I am outdoors (even if it is cloudy). And I see my Rheumatologist every 2 weeks for B12 shots. (please note that this is also due to my other diagnoses)
• How I Feel: Sometimes my eyes hurt because they are so dry that they feel like I have sand in them. I am frequently tired. My mouth is always dry, along with my lips. I have bad gums and cavaties even though I brush my teeth 3 times per day. My skin is dry and flaky and I sunburn easily.  I have other symptoms but because I have other diseases it is hard to distinguish what causes what.
• What I Do To Help Myself: I laugh a lot, especially about myself. I try to think positively and surround myself with positive people. I do things that I enjoy. I sleep when I need to and try not to overwork. I keep updated on all of the new information about Sjogren’s.
• What I Do To Help Others: I try to educate people about Sjogren’s and about all autoimmune diseases. Please share that this month is special to me and a lot of other people too!

April is Sjogren’s Syndrome Awareness Month. What is Sjogren’s Syndrome? Sjogren’s is pronounced show-grins and is a disease that affects the moisture producing glands in your body. It is an autoimmune disease and has many symptoms which mimic other diseases like arthritis, fibromyalgia and even Multiple Sclerosis, making it difficult to diagnosis.

The main symptoms though, are dry eyes and dry mouth which can be very uncomfortable and even painful. The eye dryness can cause infections, ulcers and other problems with the eyes. Dry mouth can cause cavities, problems with taste and ulcers of the mouth.

Sjogren’s can also affect other parts of the body too which can cause serious health issues. For example, autoimmune pancreatitis, peripheral neuropathy and autoimmune hepatitis. Having Sjogren’s doesn’t mean that you will be affected in this manner, but that you are more likely to be diagnosed with one or more of these diseases.

It is important to be treated by a doctor who is knowledgeable about Sjogren’s Syndrome. Most often a Rhuematologist is your primary doctor. You will probably need an Opthamologist (not an Optometrist) and a Dentist. Then depending on what other types of illnesses you have, you may need an ENT, Pulmonologist and a Gastroenterologist.

Please visit the Sjogren’s Syndrome Foundation for more information on this disease. I have written a Squidoo lens about Sjogren’s where I write about how my life has been affected by this disease. I include information about SS and some products that can help you live more comfortably with the side effects. You can also learn how to advocate and inform others about Sjogren’s.

When you feel as if you are always getting instead of giving, it is a wonderful feeling to be able to give back. I was able to do this recently when I got an email from someone newly diagnosed with Sjogren’s Syndrome. The woman also had other chronic illnesses but her rheumatologist and opthamologist were not up to date on her new dx. She also lives in a rural area where there are not a lot of doctors to choose from.

I answered her questions to the best of my abilities and provided links to her for the Sjogren’s Syndrome Foundation and an online support group. She replied that just knowing someone who had the same disease as her was helpful. She had felt alone until our email exchange. It felt better than getting gift cards to her favorite stores. It wasn’t that I was able to answer all of her questions, but be there for her. I felt worthwhile and like I had accomplished something.

Reach out to others in some way. It can be the perfect gift for the two of you.

While I have too many autoimmune diseases to want to count and having my sense of humor, I call myself the Autoimmune Queen. I’ve been bestowed another title now, Frugal Diva from the Bilssfullly Domestic gang.

How can I keep all these awards and titles in order? My brain fog can’t handle it all. I’ll have to get me some business memory cards to help me out! My life is a mixed up but oh so fun jumble of things. I’m trying to keep my mind busy so it doesn’t get stagnant.

Why not do things to keep your mind working too? There’s video games, crossword puzzles, word searches and Brain Games: Try the Lumosity Brain Training Program. Only $6.60 a month.
.

And while you’re trying new things out, check out my article, Saving Money with Frugal Movie Tickets over at Blissfully Domestic. Enjoy!

It’s finally here! Invisible Illness Week has begun. The virtual conference of speakers and listeners will take place on Blog Talk Radio. There are instructions on how to use this site, which makes it easy to either use their chat system or your own phone to call in and ask questions.

You can register in advance so that Lisa Copen and Rest Ministries, the coordinators of this event will know who is taking part. Plus this will help to get you in the running for the prizes that are being offered this year.

Learn about the speakers and get the schedule too. You can prepare in advance by visiting Blog Talk Radio and setting up a reminder email or use your own online calendar to do the same. You don’t want to miss this year’s speakers!

I’ll be speaking on Thursday, September 11th at 3 PM EST on How to Get Paid To Blog. Please join me. I’m offering a two hour consultation on setting up a blog for free!

Invisible Illness Week is necessary to provide people who feel isolated, misunderstood and often depressed. Having this conference online is perfect for people like me who often can’t attend conferences in person due to our health issues. Thank you Lisa Copen for all you do throughout the year with Rest Ministries and for National Invisible Chronic Illness Week.