Sun, Sun, Sun, oh how I am going to miss the sun kissing my pale white skin. I was warned to stay out of the sun, but wasn't given a very good explanation why. Just, stay out of the sun, it could make you sick.
My last entry, over a month ago, was also about the sun. I would like to make some corrections about the info I posted. I was told that I needed to supplement with vitamin D, but I recently read an article saying that vitamin D was actually more harmful in the longrun when it came to lupus, and I gave a link to that article in the last blog. Someone has cleared up the confussion for me. Apparently there are 2 types of vitamin D. There is D2 and D3. D2 is the vitamin D that was found to be detrimental. D3 is what we all need to be taking. So please, do yourself a favor. Find out what your levels are and if you are deficient, start taking a good supplement of D3 or if you don't have lupus, spend some time in the sun without any sunblock. 15 minutes, twice a week is all it takes to produce enough vitamin D to keep you healthy. A quick google on vitamin D deficiency will produce tons of links to how a vitamin D deficiency is connected to many types of cancers and autoimmune diseases. We have only just begun to realize this vitamins major importance.
OK, now on to flares. My understanding of them was pretty much nill. I didn't know if I was experiencing a flare for the last few months or what. Well a few weeks ago I actually managed to put together a few really good days. My husband and I took advantage of this by doing some work that needed to be done, most of which required spending time outside. It was a hot sunny day but I wasn't worshiping the sun or anything, I was just doing some work and was in and out of it all day. I did realize at one point when I was standing outside talking to a family member that I probably should seek cover because I had been standing out in the sun for a while and I was aware of the danger. By the end of the night I was tired from all the work but nothing out of the ordinary so I thought I was safe.
The next day I woke up feeling as if I had been dragged behind a truck for miles. My joints were screaming and my muscles hurt bad too. I was SO fatigued I didn't get out of bed. The next day and the the day after that were more of the same. After spending 3 days in bed, only getting out to pee and fix my children lunch or a lame dinner, and to run them to a baseball game, only to return home and go back to bed, I decided to call my rheumatologist. She couldn't get me in till Friday and I spent the next 2 days in bed just waiting to see her to find out what was wrong with me. Friday afternoon my husband drove me to her office. I would have driven myself but I was so weak and tired and feeling sick as a dog. The doctor asked if I had spent anytime in the sun and I told her about the previous Sunday and the work I did and the sun I got. She said I was in a flare. She prescibed me a week of prednisone and said within 24 hours I would be feeling a million times better.
I started the prednisone last Saturday and took it as prescribed for 6 days. It wasn't the way she described it would be. I didn't get any increase in hunger, or have any insomnia and I didn't feel a million times better. I did feel a very gradual increase in energy and decrease in pain each day but nothing very significant. In fact the muscle pain actually got worse the first 2 days I was on it. My legs hurt so bad I wanted to cut them off. But by the end of the week I was noticable better. My energy was back to my normal and the joint and muscle pain is almost completely gone!
I am bothered by the fact that my doctor didn't do any bloodwork on me when I went in, in the middle of a flare. I would have like to have known what my levels were at that point since just a few weeks before this my levels showed that I was going back to normal and my ANA was even negative. But she didn't. I'm lucky enought to have a dear friend that has had lupus for 17 years and has given me the heads up on what to expect at a rheumy appointment and it seems I'm not getting the care I should be. I've enver had a urine test to check for protein and I've been told that is very important. So while I like my doctor, she's nice and everything, I think it's time to find another.
After spending that week in bed I realized that what is going on with me is much more serious than I was giving it credit. It all kinda hit me. This is my life now. There are restrictions on how much I can do. There are precautions that I need to take if I'm giong to be outside. Gone are the days of just getting dressed and going about my day. I need to plan and prepare. I have done my homework on sunblocks and while I am a very big fan of organic skin care, I've learned the hardway that most of them don't work very well against the sun. There is a difference between sunscreen and sunblock and people with lupus need sunblock. Preferably with the ingredients titanium dioxide or zinc oxide. I bought myself a great sunhat from a garden center with a wide brim. I have sunblock spray that I keep in my purse. Those rides in the car where your left arm and thigh are exposed to the sun can just as easily send you into a flare! And I have umbrellas in the van and my purse to use for shade if I'm caught in the sun. My doctor said that as little as 5 minutes in the sun could send you into a flare.
I'm a fair skinned scottish lass. My husband calls me the pasty gangster. And as much as I will miss the summer glow I used to get, I am trying to come to grips with it by reminding myself that my skin will age better without the sun worshiping. So there are some benefits to it. But as I type this I'm sitting under a great big umbrella watching my kids swim in the pool out back and wishing just a little bit that I could be out there with them.
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