WARNING! Sun may cause flares!

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.

Vitamin D Definciency & Autoimmune Disease

OK, let's talk vitamin D. I'm completely confussed about this topic. During the Dr. appointment a few weeks ago, where I was diagnosed with Undifferentiated Connective Tissue Disease and borderline Lupus, I was also told that I have a vitamin D deficiency and that I should take a supplement. Of course I ran out and bought some and have been taking it when I can remember which is not everyday. You are supposed to take it with food and I rarely remember to take it. I'm lucky if I can remember my last name most days!

Anyways I remember coming home and googling vitamin D deficiency and autoimmune diseases after that appointment and finding that it is actuallly very common to be deficient in vitamin D if you have an autoimmune disease. Basically the thought was that in our culture we use so much sunscreen that we don't get enough exposure to the sun, and therefore many of us are deficient. vitamin D deficiency is on the rise. The research was all the same, that low levels of vitamin D can trigger and make autoimmune diseases worse. So ok, I need to be in the sun, without sunscreen to get vitamin D. But that is a big no-no with Lupus. So I guess the only alternative is the supplement. I remember thinking if so many people with autoimmune disease are deficient in vitamin D, maybe the autoimmune disease is the cause, not the symptom.

Well it seems my hunch may be correct. Last night I came across an article in Science Daily with this title:

Low Levels Of Vitamin D In Patients With Autoimmune Disease May Be Result, Not Cause, Of The Disease

ScienceDaily (Apr. 16, 2009) — Deficiency in vitamin D has been widely regarded as contributing to autoimmune disease, but a review appearing in Autoimmunity Reviews explains that low levels of vitamin D in patients with autoimmune disease may be a result rather than a cause of disease and that supplementing with vitamin D may actually exacerbate autoimmune disease.

you can read the rest of this article here

so hmmmm. now what do I do? I don't know a whole lot about the risks of living with a vitamin D deficiency but I do know that it is associated with a higher rate of cancer. But supplementing
with it will make my autoimmune disease worse in the long run. Is this my choice? Risk cancer or worsen the autoimmune disease? That's just great. And even if I do choose to take the supplement, will it work? I know a girl that has seriously low vitamin D levels and she has been supplementing with the highest dose possible, and yet her levels have continued to drop.

My gut tells me that I should take the supplement because I can live with autoimmune disease but cancer is a much scarrier diagnosis that I don't wish to tango with. Anyways, I guess I'll bring that article with me to my next rheumotology appointment in 3 weeks and see what the Dr. has to say. Maybe I shouldn't worry about it so much, since even if I decide to take it I'll most likely forget to take it most days. Ah what a life I live.

Undifferentiated Connective Tissue Disease & Lupus.............WHAT?!

Well aint that a bitch! So I got in to see Rheumoatologist about a month ago. She asked lots of questions and drew some blood and scheduled me back for results 2 weeks later. Those 2 weeks I held it together pretty well as far as I'm concerned. It wasn't until the last few days that I couldn't take it any longer and went to the library and got every book on every autoimmune disease that I could find. I skimmed the books, reading the symptoms, trying to find something that sounded like me. The fibromyalgia symptoms were the closest. In fact I had all but 1 symptom of fibromyalgia.....the headaches. So I was pretty confident that the Dr. was going to say fibro. But then again, what about that Rheumatoid Factor that was high?

Lets go back. My family dr. did some bloodwork because she thought I had fibromyalgia but ran some bloodwork to rule out any other possibility for my muscle and joint pain and fatigue and alarmingly scarry memory problems. Well the bloodwork came back and the only thing that was off was the Rheumatiod Factor, which is an antibody. Mine was 111 and normal is less than 20. So that's when she sent me to the Rheumatologist.

OK back to the Rheumatologist. A few weeks ago I went back for my blood test results and here's what the Dr. had to say. She said that my Rheumatoid Factor was still elevated, and my ANA was positive and a few other things were off, my Vitamin D was low. She went on to explain that I was positive for Lupus, but that it is borderline at this point. I also have Undifferentiated Connective Tissue Disease. HUH?! She wrote it down for me because I had never heard of it and was pretty taken aback. She said that I wouldn't find much info on the internet either. Great! I was too shocked to ask any questions. My mind was blank. She said that the medication for Lupus and UCTD is the same and she wanted to start me on Plaquanil. She asked if the Tramadol was continuing to help the pain, which it is, so she wrote me a refill on that.

Now normally I would go home and google the hell out of the new prescription for Plaquanil. I would read the side effects and scare myself out of taking it. But quite frankly the word Lupus was much scarrier to me than any prescription for it! I filled it immediately. I only know 1 person with Lupus, and she is in terrible shape. Dharma I miss you my friend!

So I've been on the plaquanil for 2 weeks now and up until today I thought it was really working. Today I woke up and feel god aweful. My elbows, fingers, ankles, neck and hips are KILLING me. I couldn't even bend my left ankle this morning. My whole body is aching. The thigh pain (burning aching pain) that I've had since last summer is gone so I do think the plaquanil is working, just not 100% yet. I was told it takes 6 weeks to work, so I was surprised that after just a week I was starting to see improvement. I'm sure all this pain today has something to do with the fact that the weather changed dramatically today. The last few days we've been in the 80's and sunny. Today we're back into the high 60's and it's gray and rainy.

I'm having a few other issues that might be related to these newly diagnosed diseases, which hopefully I'll remember to ask about. I've got a few patches on me, one on my inner left thigh, and one on my right hip area, that look like a patch of broken blood vessels? It's hard to explain but it kinda looks almost like a bruise except it's not bruised, but a cluster of tiny reddish purple dots. The other thing is my eyes. 2 months ago my left eye looked like it had pink eye, but only for a day, and I've been having problems with them ever since. When I wake up in the morning my eyes have so much goop in them. I would normally chalk it up to allergies, only I don't have any other allergy syptoms at all. The plaquanil does seem to be helping with the hives on my face too. I was getting at least 1 hive everyday on my face. Why my face of all places?!

Now here's the reallly frustrating part! At first I just focused on the lupus diagnosis because I kinda knew what Lupus is and I know it's not good. I googled about that and got familiar. But then I started googling Undifferentiated Connective Tissue Disease because that was the other half of my diagnosis and I didn't have a clue what that was. I just assumed it meant that the Dr. didn't know what it was, I mean that's what the title sounds like! Turns out it's an actual autoimmune disease and there isn't a whole lot of info out there about it. And today I went to Amazon to see about ordering a book about it and there isn't a single book about it! How am I supposed to understand what's going on with me if nobody else does either?!

So that's where I'm at today. Pretty confussed about everything. I wish that I had someone to relate too ya know. I wish I had someone to talk to that understood what I'm going through and could say, yea I know, me too! I feel so alone in this.

j

I Can't Believe It's Been 5 Months!

The worst case scenario survival handbook....................................boy could I have used this over the last 5 months! I wonder if there is any advise on how to survive 3 major surgeries within 7 months? I wonder if there is any advise on how to push through days of pain and fatigue when you have a family to take care of? Maybe I should write one since I've become an unwilling expert.

I started this blog with intentions of documenting my life. The last time I wrote I was just about to have the 2nd of 3rd major surgeries in a 7 month time frame. I ended the last blog promising to be hopeful and believe the best was yet to come and healing was my destiny. Guess what? I was wrong.

The surgery in October didn't go so well. I just never seemed to recover from the surgery. Instead of feeling better, I felt worse than ever. I was so ill I couldn't hardly eat. I was taken to the ER by ambulance just a week after the surgery because I got dehydrated and my blood pressure was struggling to stay up. My bladder hurt so bad that urinating was a nightmare. I was having bladder spasms, colon spasms, and abdominal wall spasms. All of this I was told was normal by my doctor. He gave me some bladder spasm medication which calmed things down but the pain when urinating never went away and eventually I stopped taking the medication because it was constipating me terribly.

The holidays were pretty sad. I wasn't able to walk my children around the neighborhood for Halloween. I was in too much pain. I put on my pajamas after my husband left with the kids and layed down, only getting up to pass out candy whenever kids showed up at the door.

We went to my mom's for Thanksgiving but because she lives an hour away and sitting in the van for that long hurt my abdomen so much, by the time I got to her house I was in too much pain to really enjoy myself. I popped the percocet every 4 hours but it didn't help much.

For Christmas Eve my family came to my house. I did my best to clean up the house, but my mom prepared dinner because she knew i was in no condition to cook or entertain. She even brought the dessert. I spent Christmas day just laying around in pajamas praying for an end to the pain. Day in/day out, the pain ran my life. There aren't even any good Christmas pictures because I was in too much pain to get up to take them.

New Years Eve I spent on the couch. Again, with my bottle of percocet and heating pad, waiting for the ball to drop, hoping for some miracle. Hoping that 2009 would bring me relief from the pain. What I got instead, just 11 days later, was the worst nightmare of my life. After getting up one Sunday morning to urinate, I felt a pop, and what followed was a pain that I can't even put into words. I thought the day to day pain that I was in was bad, but it was nothing compaired to the pain that I was in that morning. It took my breath away. Long story short, I was taken by ambulance to the hospital where I was cat scanned and given pain meds, and then transfered to another hospital. I spent the rest of that day and the following day waiting for my doctor to show up. About once an hour I had a tidlewave of pain wash over me. Spasms. Unbearable, unthinkable, unimaginable pain. The doctor left me there for 2 days before showing up, knowing that he didn't have resident coverage, which meant that the hospital's hands were tied to care for me. I pleaded for a urologist as it was clear to me more than ever that something was wrong with my bladder but was denied because they couldn't get ahold of my doctor and they needed his orders to send in a urologist. I pleaded for pain relief, but I got the same run around. When my doctor finally showed up Monday night I was beaten and desperate. My family was furious with him, as well they should be, but I just wanted the pain to stop and he was there and I needed him to stop the pain.

I woke up from surgery to find out that my remaining ovary was twisting and had ruptured a cyst, had another cysts on it, and was full of cysts. It was up near my ribcage. There was a hole in my bladder, and my abdomen was full of fluid. Probably a mixture of the ruptured cysts fluid and urine leaking out of my bladder. I was sent home with a catheter for 2 weeks. I never want to see another catheter bag as long as I live!

It has taken me a good 2 months to get back to functioning at about 1/4 of my normal capable self. I'm now in menopause at 35 years old. My bladder is still pretty sensitive and if I don't empty it in the middle of the night, it's not too happy with me in the morning. I finally got off of pain killers, only to find that the muscle pain I have had since last summer is still going strong and some days I feel it all over my body. I'm now being tested for Fibromyalgia and Rheumatoid Artheritis because a blood test came back positive for an antibody called rheumatoid factor. My fear of menopause triggering another disease process has come true it seems. I've lost so much weight I frighten myself. I've lost 22 pounds now and every week I loose more.

My husband has become the person that handles everything. He really stepped up to the plate and I'm so proud of him. He has done a wonderful job of juggling working full time and coming home to have to care for me and the kids. Oh, did I forget to mention he lost his job in October just after my surgery? Yes he did. We lost our insurance for a month too. Fun times! But it all worked out ok. He has a new job now and things are getting back to normal.

I sorta wish that I had kept up with this blog so that I could have journaled all the tragedy that we faced and lived through. It was just so depressing and I was so run down. I really didn't have it in me to journal it. I'm back now. I'm not making any promisses but I'm gonna try to keep this thing going. I think it's good to look back at where we've been to remind us just how strong we are and how fragile life is, and how it can change so dramatically in the blink of an eye.

j