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brandichi
11-13-2009, 06:37 PM
It has been such a lousy month! A day or so after I last posted, I noticed my eye was bothering me, but didn't think too much of it. Next morning, my eyes were stuck together. Pink eye!! Which wouldn't have been so bad, I got drops and it should have been over. But this is me...not only did I have light sensitivity with it, but going on the computer or watching tv made my eyes hurt terribly. Reading didn't feel all that wonderful either. :grumpy: I still worked, but pretty much went home and went to bed. What else was there to do?!

Then, as soon as I started to feel better, I got re-infected!! I think maybe the drops were not as effective because a couple times I used them along with my Restasis, and I don't think I was supposed to do that. Or another kid gave it to me again, which is totally possible. (And I'd kind of rather blame a kid than myself, lol) :)

Okay, so I started to get back to sort of normal and guess what? I got H1N1 :hissyfit: I got the vaccine, but got sick 9 days after The vaccine takes effect 10 days - 2 weeks after injection. I wasn't as sick with it as I expected to be, although it was pretty bad. But considering I knew someone who died from it, I expected considerably worse.

I should have known. Once the flu passed, it triggered a lupus flare similar to how I felt when I was first diagnosed. That's where I am right now. I missed a full week of work and just went back yesterday. I am really struggling.

To make things even more interesting, the primary care doctor doesn't know exactly what's going on with me except "it must be lupus" and wants the rheumy to diagnose this. Which makes sense, and I had an appointment. Unfortunately, the day before my appointment, the receptionist called. The rheumy has the flu!!!!! Fortunately, she's coming in tomorrow and I have an early appointment. Thank goodness!!

So what I'm dealing with now is breathing trouble - tightness, dry cough, and wheezing if I walk around. Lots of pain, and I'm usually good at blocking/ignoring pain. This is more than I can ignore. My left hip is terrible, almost constant pain. Under my rib cage on both sides, especially the left, is very painful. I've had a headache in the back of my head since I first got H1N1 days ago, it never stops and the pain radiates to my neck most of the time. I'm always nauseated and bloated, and my throat feels tight, sort of like the goiter is getting bigger. My ankles are very sore, and have been for a couple weeks. And I've had a fever that still hasn't broken. From the reading I've done online the last couple of days, I'm wondering if I might have sarcoidosis. The PCP said I very well might, but it's for the rheumy to diagnose.

I have been feeling like such a failure. I was doing great, I was in remission for over 3 months, for the first time since I was diagnosed in 2006. I had a life again and felt good. Now it's gone and I feel awful. I know this will pass, but when? And what will it take to get there? I've gained 30 pounds this year because of my own stupidity. If I go on prednsione, which I know I need, I'll probably gain more. Or, what I suspect the doctor will do is put me on methotrexate. She warned me that she treats flares aggressively. I can barely do my job the last couple days because I feel so ill. I had to teach mostly from my desk and that's so not me. I walk like an old woman, and had to ask a couple people to make copies for me because I just couldn't walk all the way to the workroom. I couldn't go to church last week, and I probably won't go this week, and that's a huge support system for me. I hate, hate, hate being sick!!!!!!!!!!

If you're still reading this novel, thanks ...I've been wanting to get back here for a few days now, but didn't know what to say. I guess I found the words now. :embarrassed:

magistramarla
11-13-2009, 07:42 PM
Hi Cheryl,
I was wondering why you had disappeared. I'm sorry to read that you've been feeling so bad. I'm sure glad that you survive the flu - now just concentrate on feeling better!
From one teacher (well, former teacher) to another - I feel your pain. I used to hang in there and try to teach from my desk when I felt so awful, I wanted to crawl under it. What grade level do you teach? Kids are pretty forgiving. I know my teenagers were. They would look out for me all the time - pick me up when I fell, run errands for me, and protect me from the ruffians when I was walking down the hall.
Take care of yourself and be sure that you are well before you go back. You don't want to have a relapse. That wouldn't help you or your students.
Gentle teacher to teacher hugs,
Marla

Tamy
11-14-2009, 04:27 AM
Hello
I feel for you so much. It sounds like you've been to hell and back. I hope your feeling much better, and with time, you will be fine. Take great care of your self, and stay positive.
Tammy

pandagirl
11-14-2009, 09:50 AM
Hang in there..you've gotten better before, and you will feel better again!! You are proof positive why I will NOT get flu shots!! I will be the one percentile...I have "that" luck and reactions to things. I feel your hip pain for sure...my hips get stiff/painful frequently, especially with the weather changes her in Jersey...cold and wet today. Keep your chin up.

debbie-b
11-14-2009, 11:16 AM
Sheryl

I am sorry, that you have to go through this stuff. Hopefully your rheumy can help you. Myself, I have just gotten a shot of steroids and felt much better for three days, but I can feel the pain coming back right now. Hope you get relieve, even if it is just for a few days, like me. For 3 days, I felt STRONG LIKE BULL,lol.

Debbie

brandichi
11-14-2009, 10:47 PM
Thank you so much for what you wrote, all of you. It helps a lot, and I am feeling better emotionally than I was yesterday.

I saw the rheumy today, and she is wonderful!! She confirmed that yes, the H1N1 triggered a lupus flare, and it's going after my muscles and the airway, but right away she said, "And you'll be okay." Just hearing that reassurance from her made me release that stress and fear that had been building up all week, and I was finally able to smile even though I was in a lot of pain.

I'm on prednisone for a month, until I go back to see her. She wants me to take 15mg today and tomorrow, then go on 5mg daily. I can handle that. Of course, I'd much prefer not to take prednisone, but a low dose like this is manageable. I also have to keep using the nebulizer as the asthma specialist prescribed, and I have a sinus infection as well, so I'm on Cipro.

My mom came with me to the appointment because she's been so worried about me. She mentioned to the doctor that I was feeling great all summer, and I ate a lot of grapes and cherries then; could there be a connection there? The doctor said ABSOLUTELY - I can't remember now exactly what is in grapes and cherries, but it's something that helps with pain and inflammation. She wants me to eat frozen or dried cherries, drink cherry juice, eat grapes, and take grapeseed extract daily.

She also said that Plaquenil lowers temperature, which I didn't know, so with something like the flu, it's super important to monitor my temperature. A temperature of 100 for me is like 104 - 105 to other people, so if my temp goes up that high, ever, I am to call my primary doctor and get admitted to the hospital. Yikes!

I'm trying to relax about work, but that's not easy. I've decided to postpone making up my evening conferences until right before Thanksgiving break. It's only a couple extra days, and I can take the holiday to rest up. One of the most important things the doctor said today was "Listen to your body." I know that, but I needed to hear it again. I don't feel that I can do an evening right now, even if I take off the morning, and I don't want to make this flare any worse. So it will all work out in the end.

Again, I can't say how much it means to have this community, and all of you, who really understand. I've been going back and forth with everyone in my daily life, either pretending I'm fine, or nearly losing it completely, none of which is helpful because they just can't understand really.

Marla, I teach 5th grade, and my kids are the most entertaining group I've ever had. They are really sweet and they all made cards for me while I was gone. Your students sound so sweet, protective of you and helpful. What are you doing now that you aren't teaching? I know the day will come for me too when I can no longer teach, and that scares me terribly. Both because of the income, which I need to keep my house, but also because I dearly love working with kids and I would be lost without it. I love the summers off because I am able to have more of a life, but I always look forward to September again.

I hope all of you are doing okay today...hugs to you!

magistramarla
11-15-2009, 08:57 PM
Hi Cheryl,
I'm so glad that you're feeling better! "Listen to your body" is a good plan, and I know how hard it is to do that when you're swamped with lesson plans, grading and conferences. Fifth graders can really be a handful, so take care of yourself.
I left my job because the AF sent my hubby from Texas to California to work on his PHD in computer security. The job had been getting pretty stressful for me, so it was time to leave. I taught in a huge (3000+) high school on a rough side of town. We started having gang fights in the halls during the last couple of years. We also had some pretty low grades on the insane state TAKS test, so the administration was taking it out on the teachers, and giving us so much extra paperwork to do, it made it very difficult to actually teach.
I loved my kids, and I really miss them, but it is much better for my health to be out of there. Besides the Lupus and RA, I also have Meniere's Disease and Spasmodic Dysphonia, so it was getting more and more difficult for me to hear the students and to make myself understood when my voice was bad - not good things for a language teacher!
Right now, I've promised Jeff to keep his clothes clean and to keep him well-fed while he's studying like crazy. I watch a lot of Food Network shows during the day, and then try the new recipes out on Jeff in the evening. If I do any teaching again, I would like to teach in a private school or perhaps do some tutoring, maybe for homeschooled kids.
I'm also planning to take some Italian classes at the Community College. We want to take a vacation in Italy when Jeff graduates, just before we have to move back to Texas. I want to see as many Roman archaeological sites as I can!
Take good care of yourself!
Hugs,
Marla

mountaindreamer
11-16-2009, 08:04 PM
hi cheryl, sorry i have been away for a few days. I am so glad that you liked your rheumy. I have never heard the theory of the grapes, but anything that will help is worth the try. I know you hated going on the prednisone, but it sounds like you needed it to get out of this flare. Cuddle up with brandi and get some rest, and yes, listen to your body.