A blog about my journey with Sjogren's Syndrome and Raynaud's Phenomenon and other autoimmune disorders.


Life is pretty good. I have a lot to be thankful for. I kept promising that I was going to blog about my journey with autoimmune disorders but there was always something else that had to be done. So, it is here, that I will tell my story. I am not a medical doctor. All I can do is tell you what I went through and how I found my personal pathway to healing.

After I gave birth to my daughter Savannah, I felt fantastic! Actually, through my whole pregnancy, I experienced more energy than I've ever had. I felt the best I've ever felt while I was pregnant, minus the nausea and if it wasn't for the 24 hour nausea, I wouldn't mind being pregnant yearly.

But somewhere between that first year after giving birth and now, something went wrong.

In retrospect, (hind-sight is always 20/2o) there were symptoms. My body was trying to tell me something. Maybe I wasn't listening or maybe I was just too busy.

My husband does a lot of buying and selling (auctions, etc) and I was helping him with his many projects. I know that I taxed my body to the limit and I just wasn't taking care of myself like I should've been. (anyone who really knows me knows that I"m not exactly a nutritionist) But anyways, I gave birth naturally and had a really great experience. I just felt like that was the right choice for me. But then, when it came to breast feeding, I couldn't do it. I was baffled by how much it hurt! And I"m not talking about "pins and needles" feeling or a pinch, or whatever other terms successful breast feeding mommies use. (yes, I am a little bitter at the advice I received during that time) But anyways, I kept trying. I breast fed for two months and I would cry through each feeding. Now, I kept seeing my lactation specialist, I kept seeking help and I took all of the special pills and creams that I could get my hands on. I remember making the comment to the nurse that I would rather give natural birth every single day than breast feed my child. THAT is how much it hurt. (I don't know how to explain that to someone else). Anyways, NOW, I know why I was in so much pain, but I didn't then and you wouldn't believe the amount of guilt and shame I felt.
There were other symptoms, too. Like my hair. My hair was always falling out. And I've always had an oily complexion and oily hair. But everything dried up. It happened so suddenly, I don't think I even put two and two together until later.
I remember seeing the specialist and she said that I had Sjogrens Syndrome. I'm sorry, what? When she told me the symptoms, I explained to her that that wasn't me. She said, "that's what they all say, but then they come back and say they never realized what was going on with their body". I remember thinking, "yeah, right, lady! You're just trying to diagnose me with something. Those are NOT my symptoms." But you know, it started slowly. I had told my husband weeks early that I had started sleeping with my eyes open. When he asked how I knew that, I told him because in the morning my eyelids stuck together. And there was always a constant piece of sand in my eye (that's what it feels like). And then my hands and skin dried up. And then I started forming patches of skin on the tops of my shins. But I never noticed this until my body completely shut down.
I had such terrible arthritis (which I had never had before) that it hurt to open my hands or stretch out my body. I remember laying in bed thinking how am I going to get up? Savannah had just become mobile and she was walking around. My husband would get up in the mornings, feed her breakfast and let me sleep in until 11:00 everyday. I would beg my body to get out of bed. I'm a real mind over matter person and this was the first time that I couldn't force myself to do something. My head was screaming, "GET UP!" But my body just wouldn't move. I can't explain the extreme fatigue. I've never experienced anything like it (not even to this day, thank God). I started having severe chest pains and I was constantly out of breath. I couldn't even run a vacuum cleaner! Can you imagine??? I used to own a cleaning business! I was so ashamed and disappointed with myself.
I remember thinking, maybe it's the extra weight. I had gained 44 lbs while pregnant with Savannah, so I joined a gym. I worked out 3x a week circuit training at Curves, ate right and lost 10 lbs. At the end of the 30 days, I joined another gym. I began doing more circuit training (minimum of 3x a week) far infrared suana and extreme dieting. Lost another 10 lbs. I felt even worse! The weight kept coming off but instead of getting more energy, I felt like the life was being sucked out of my body. Well, that led up to the point where my husband was taking care of the baby during the morning and then I would watch her from 11:00 to about 7:00 and then go to bed. All the while, my husband was cooking, cleaning, doing laundry and working his more than full time job!
When I didn't get better, we went to my doctor. He ordered blood tests and said that I was probably feeling fatigue due to having a new baby (now a year old!) but he ordered the blood tests just in case something was going on.
Monday morning, my doctor calls me at home. I need you to come in right now and do more blood work. Uhhmmm, okay. So I do.
He speaks to the specialist there at the clinic and then calls me back again and asks me to come talk to him. So I go in. He says, I'm afraid you are going to have to go see a specialist-- a rheumatologist. A what? I've never had arthritis a day in my life! He said, well, it could be two things. Arthritis or lupus.
Well, I was in disbelief. I just wanted an energy pill or something. Anything to get me back to my old self again.
So I went and saw the specialist. I tested positive for all of the negative antibodies for lupus. This means something........there is no one test for lupus and the AVERAGE diagnosis for lupus is TWELVE years!!
So they order more and more blood work. I take all kinds of super expensive breathing tests (try paying for that when your husband is self-employed!) They're thinking maybe blood clot. Maybe circulation. Maybe something in my lung. Then they diagnose me with poor circulation. Then Raynauds Phenomenon. Then they say maybe sclederma. The list goes on and on.
So, paying out of pocket the whole time gets really expensive really fast. They specialist says, come back in a week and I will have your diagnosis. As if Sjogren's Syndrome and Raynauds Phenomenon aren't enough fun!
So we go back in a week. She takes me into the room and says, "It doesn't look like lupus yet."
Whaaaaaaaaaat?
At this point, my husband and I mutually decided to stop seeing the specialist and all of the doctors. I wasn't getting better, the only answer they had involved pills, and we were frustrated.
A friend of a friend recommended taking a hair analysis and seeing what was going on with my body. Bingo! Arsenic poisoning. Turns out there were illegal levels of arsenic in our water. Why wasn't my husband and daughter affected? Well, from what I can tell of this sort of thing, it depends on your own personal immune system. Some people can handle high levels of potassium, arsenic, etc and never have any symptoms. Other people (with weakend immune systems) don't fair as well.
All of my symptoms looked like lupus. A lot of information out there recommends a dryer and warmer climate, thus our move to California.
I have been doing great since we have been here! So what was it? Arsenic poisoning? Sjogren's? Lupus? Raynaud's? Arthritis?
Well, we aren't sure. I still have "flares". Sometimes my hip goes out, I have a terrible pain on the left side of my upper back for no reason. Sometimes my hands cripple up and my whole body aches. Sometimes I feel extreme fatigue for no apparent reason at all.
I get "clouds" in my eyes (which I guess is another symptom) I still suffer with extreme dry mouth, dry eyes and dry skin and hair although I am doing soooo much better.
I"m not knocking the medical field. Thank God for doctors! But, all of the books that I read out there on Sjogren's and Lupus leave little or no hope. I even read one book where the author pretty much said, "lay down and die, there's nothing they can do".
One of the things that has helped me the most is that I listen to my body now. When I"m tired, I mean, really, really tired, I go to bed. Yes, even if it's only 7:30 at night. If I'm really exhausted, I cancel my plans for the day. Trust me, although this is frustrating, it has proven to give me my health back!
If you are diagnosed with an autoimmune disease (and there are over 200 by the way) don't despair! Don't just jump on the magic pills they offer. Take some time out and try to figure out why your body is feeling the way it is. I know that a lot of people have to take medication for the diseases and that's a good thing. But please, if you get diagnosed with Sjogren's or Lupus, please look at alternative options. I know this is a case by case choice because they symptoms vary greatly as does the level or seriousness of the disease.
I feel fortunate that my body was able to get better. (I know it helped that many, many people were praying for me, too!)
I hope that through this I will never take my health for granted ever again.
I still have to remind myself to take a break. I used to get really frustrated when I couldn't get everything done that I had set out to do for the day (sometimes still do). But, I realize that I need to take care of the body and health that I have so that I can in turn be here and take care of my daughter and husband.
This post is just a short intro into my path of health. I hope to add more in the future and share some things that can naturally help if you suffer with the same symptoms as I've mentioned above.