Wednesday, April 27, 2011

A Few Of My Favorite Things

Apparently the word on the street (OK not on the street, just in my doctor's office) is that my autoimmune disorder appears to be Sjogren's Syndrome although nobody seems to be quite sure whether it will end up being my only autoimmune diagnosis. At the moment though, that is the case. Anyways, I refer to it quite a bit in my blog postings and it dawned on me that I never write much about the technical aspect of it. To be honest, the idea of that bores me to tears. I don't mind blogging about how a chronic illness affects my daily life, the emotional ramifications of it, etc. but I figure that if someone wants all that technical/medical mumbo jumbo, they can do a Google search.



However it dawned on me the other day that I go through a lot of effort managing the biggest issue related to Sjogren's and that is: dryness. In Sjogren's Syndrome, the body's white blood cells attack the moisture producing glands (known as exocrine glands) in the body. These little glands are everywhere, and I mean EVERYWHERE in your body. Therefore, when they are not working properly, it wreaks havoc on your entire body; even potentially causing organ damage.



There is no known cure. Actually, there is not even an accepted "standard" treatment in terms of medication. It is really hit or miss most of the time. This brings us back to the dryness problem. I have dealt with this constantly over the past three years or so and during that time, have experimented with more products than I can count. I have decided to list them as they are the products I use on a daily basis to help control the dryness. I am hoping that this blog posting (if anyone reads it!) will find its way to someone else suffering from this debilitating condition and be of some assistance to them. Just as a side note, I do not represent any of these companies, do not get any free products and therefore my opinions are unbiased. What may work for me though, may not work for everyone.



* Crane 3.4 Liter Ultrasonic Humidifier: A humidifier is a must for this disorder. I have to run it every night for at least nine hours to help keep my eyes, nose, mouth, skin, sinuses, and lungs from drying out. I stayed at a hotel recently without it and the results were not good. This particular one is easy to use, quiet, easy to fill/clean (cleaning regularly is a must), and not expensive. This is the third one I have used and by far, the best.


* Dove Cream Oil with Shea Butter lotion: I use lotion about twice a day, even in the warmer months, which can get pricey but for a reasonable cost, you get excellent moisturizing with this one. I also use Crabtree and Evelyn Body Cream and San Francisco Soap Company Body Butter for scented moisturizing, both of which will not disappoint.


* Systane Ultra High Performance eye drops: I can honestly say I have used every dry eye preparation on the market and these drops have been a godsend for me. With Sjogren's Syndrome, it is very important to get a drop without preservatives because the preservatives are very irritating to the eye.


* Lacrisert Ophthalmic Inserts: These are available by prescription only and most eye doctors do not routinely prescribe them, which is a crying shame. Something about it being an older treatment for dry eyes (I think that the drug representatives must not provide free lunches). I found out about them through the Sjogren's Syndrome Foundation and begged my doctor to let me try them. They are a little tricky to get used to (similar to putting a contact in), but I use them every night and have seen significant improvement with them.


*Aquaphor: This is a skin protectant that is available at most drugstores which is a petroleum base. It's pricey but a little bit goes a long way. I apply it with a Q-tip to the inside of my nose every night. It's also great for chapped lips and pretty much any dry patches on your skin.


* Ayr Saline Nasal Gel: Great for also lubricating the inside lining of your nose.


* NetiPot: I love the NetiPot. I am not even sure how I ever lived without it. It is a saline irrigation system to clear your sinuses and many people will swear by it to treat allergies and sinus issues. Sjogren's can cause sinusitis and I use it anywhere from one to four times a day depending on how bad things are. There are also those saline squirt bottles on the market, but I like the gentleness of the NetiPot's flow.


* Biotene Dry Mouth Products: God bless the Biotene company. They have really done a decent job of battling dry mouth, which is more than just a discomfort. I use three of their products every day: Oral Balance Gel, Moisturizing Mouth Spray, and Dry Mouth Mouthwash. It is pretty much the only things I have tried that have helped. There are prescription medications on the market for dry mouth but the side effects list scared the heck out of me so Biotene is my savior for now.


*Blistex Lip Medex: This stuff is not for the faint of heart. It is hardcore medicated lip balm. It comes in a bright blue tub you and will cure the worse dry lips possible. I use it once or twice every day and my chapped lips are a thing of the past. It doesn't smell all girly and pretty but I have other products for that.


So that is it. Those are my tried and true dryness products, at least for now!

4 comments:

  1. TY Christine for your writings. From someone who has SLE, Sjogrens, Fibromyalgia (among a host of other health challenges), I appreciate you sharing what has helped you. I especially find your comment on the Neti Pot interesting. I first heard of this thru Dr. Oz, and am impressed by the simplicity, yet effectiveness. I also found interesting your comment on Sjogrens contributing to sinusitis. I have chronic sinusitis and in fact found myself hospitalized last summer for 7 days when the right side of my head was swelled to the size of a basketball. When I was originally admitted it was thought that I had infection going to my brain, but after numerous specialists and testing, discovered chronic sinusitis (combined with an abscess - a real shocker since I see the dentist every 6 mos - we all know what Sjogrens can do to our teeth - sometimes more frequently. It was a complete fluke that I had an abscess, because i had no pain - nothing showed up thru all my dental x-rays, yet a hairline crack had developed in a crown and over the years bacteria had seeped thru the crack). These two challenges (sinusitis & abscess) came to their peek simultaneously causing huge swelling and the most intense pain I have ever experienced. It took about 3 months of treatment to completely eradicate the infection: 7 days in the hospital; 4 weeks with a pic line; oral medication for a couple months; a tooth extraction as the doctor knew I was at risk for this to reoccur; and continued monitoring - one being a recent CT scan. This is just ONE of the many complications that Sjogrens has caused me. When you try to explain to someone that your body is not able to create moisture, it sounds so minor --- no one - unless they have it - knows all the complications that can be caused by Sjogrens. Thank you, Christine for sharing your 'story'. For anyone new to Christine's postings, I developed a FB group for Sjogrens: https://www.facebook.com/group.php?gid=18525513136 A group for those with Lupus: https://www.facebook.com/group.php?gid=5497584605 And a 3rd group for Autoimmune Diseases: https://www.facebook.com/autoimmune.disease.forumI encourage everyone to join and share your experiences - knowledge - and empathy for one another. Together, we can make a difference. Trish Caldwell Landsittel

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  2. Hi Trish ~ Thank you for sharing your experience. I am so sorry to hear what a terrible ordeal you had. The chronic sinusitis has been a constant battle for me mostly over the past year although I have recently found relief with acupuncture and Chinese herbs.

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  3. Thank you for your words, Christine. Having people not understand or minimize the horrible realities of these diseases is sadly such a common occurrence. You words about exactly WHAT happens when there is a lack of moister truly expresses the devastation it can cause. Thank you.

    Peace along the journey!

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