Last night, when I thought it would be too late to hear anything from the rheumatologist, the phone rang. The results of her biopsy confirmed a diagnosis of Sjogren's sydrome. This morning she took her first dose of Prednisone. Her doctor told us that because so few kids her age are diagnosed, that there isn't a standard protocol of treatment. He is going to collect some information and see Haley the first week of November. Hopefully her inflammation and pain will subside before then.
I don't know how to feel right now. I'm numb. We needed to know what was causing her hand symptoms and pain. That answer is here, along with the cause of her dental problems. I don't like this Sjogren's syndrome. I wish my daughter didn't have it. There are parts of it that downright frighten me. That's where God steps in. I can't bear the weight of it all right now, so He is helping me out.
We've had enough of all this for now, so we are going to Disney World. Just for the evening. Haley is hurting but wants to go. She'll be on wheels so it won't be too much of a strain for her. The distraction might be nice. For all of us.
I don't know how to feel right now. I'm numb. We needed to know what was causing her hand symptoms and pain. That answer is here, along with the cause of her dental problems. I don't like this Sjogren's syndrome. I wish my daughter didn't have it. There are parts of it that downright frighten me. That's where God steps in. I can't bear the weight of it all right now, so He is helping me out.
We've had enough of all this for now, so we are going to Disney World. Just for the evening. Haley is hurting but wants to go. She'll be on wheels so it won't be too much of a strain for her. The distraction might be nice. For all of us.
2 comments:
I'm sorry to hear about your daughter's diagnosis. I was diagnosed with Sjogren's Syndrome about five years ago.
At the time my eyes were killing me, and I thought it was just eye strain from working on the computer too much. In those first couple of years I was suffering a lot: I could not stand being in bright light (bright light is very painful for dry eyes, apparently), my hands hurt all the time and without drugs I wanted to cry all day, and I would get "flares" periodically that felt like severe cases of the flu - in pain all over, slight fever, and so tired I literally could not get out of bed sometimes.
But, most of this has passed. I use Restasis eye drops twice a day, and they have been great for me. The over the counter stuff is fine as well, but does not address the inflamation. I keep a couple of bottles around all the time, but I'm no longer using it ten times a day - now just a few times a month.(I use the orange label GenTeal brand; there is a "severe" level that is gel that I was using at night for a while, and it was good while I needed it.)
To control the pain I was using Vioxx, until it was pulled from the market, and was devastated because over the counter drugs did not touch the pain in my joints. But I was reading about alternative healing ideas at the time, and came across information on omega 3. I started taking four fish oil capsules a day, and am up to six a day, and this has absolutely turned my entire life around. I literally could not get out of bed in the mornings for about 30 minutes after I woke up, I was in so much pain. I had flares every couple of weeks, so bad that I could not move well at all. I'm on the computer all day for work, and I was getting to the point where I could not type because my hands were too stiff and sore.
But, now I'm not only able to do pretty much anything I want to do, I rode my first century (100 miles) on my bike this year! I really believe that between the Restatis, fish oil, regular exercise, and a Mediterranean-style diet have been the keys to my health.
Everything is not perfect. I can't handle brightly lit rooms - I wear my sunglasses pretty much all the time when I'm not at home. When I bike I wear my regular prescription sunglasses and a pair of old-lady-style sunglasses that slip over and around your glasses, to help keep out not only too much light but also keep out the wind. I still get flares sometimes, usually when I'm really stressed out, so I try to avoid getting upset and tense. I had some scary times when the entire right side of my body suddenly lost about 10% sensation; I was tripping and falling a lot until I got used to it. Assorted doctors tested me for everything under the sun but emerged with no definite reasons why this happened (I'm sure you can relate!). It's still there, but I really don't notice it anymore except when I am tired and tend to drag my right side along, or doing yoga or hiking over rocks, because my balance is still a little off (I have to think about it more than I did before).
If you have not already found it, this is the website for the Sjogren's Syndrome Foundation: http://www.sjogrens.org/, and this is the Mayo Clinic's page on Sjogren's (copied by other people all over the web): http://www.mayoclinic.com/health/sjogrens-syndrome/DS00147.
Sjogren's does not have to ruin your life, or your daughter's life. Autoimmune diseases seem to be weird and to be very different in different people. As you browse around for information, and I definitely recommend that you do so - I learned almost nothing from my assortment of doctors, you will find that most of us do what we can to incorporate Sjogren's into our regular lives. It does not have to be the end of anything; getting things under control helps a lot, and you learn a lot about acceptance and patience when nothing is under control! Having a good attitude helps here, as it does everywhere, and it sounds like you guys have that already.
Good luck to you! :)
Wow Mary, you have been through it and have kept your positive outlook. Thanks for your words of encouragement. Haley sees the rheumatologist in Nov. and I'm going to ask about the Restasis. It's nice to know that you are still out there living your life. Take care.
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