Friday, March 22, 2013

Strep Throat Strikes

I have been having trouble at work-I'm a teacher-with my absences. Obviously the trouble stems from my Lupus but a lot does have to do with me and my choices.

Both my son (6 yrsold) and daughter (4 yrs old) were sick with a terrible cold last weekend and of course I had them in bed with me as I gave them their nebulizer treatments every couple of hours as my husband slept beside me. He woke up complaining they had kept him up "all night" but I don't remember too many breaks in his snoring.

So then in the morning when he is getting himself ready for work, I am trapped in bed under my cement duvet barely able to move debating with myself whether I'd be able to get up and go to work or not. I lose the argument, as I often do, and call in for a sub. Seconds later, my husband steps out of the bathroom and realizes I am not getting up. He tells me I have to go to work (which I know) and that we need the money (which I know) making me feel worse than I already did. He realizes he made me feel bad and kisses me goodbye and tells me to rest. I go back to sleep and he rushes out to work while my 15 year old and 11 year old sons stay in bed asleep because I didn't wake them up to go to school and my husband never had that responsibility.

So what is wrong With this picture? Plenty, but I can't blame anyone more than myself. I give myself all these responsibilities and take on too much thinking I am still the same woman I once was but in the end, I have to acknowledge that Lupus is a debilitating disease and I need help. It is kicking my ass! I've been complaining that my family is in denial about my illness all the while trying to do everything as I used to and killing myself doing it-literally.

Maybe it wasn't a good idea to let my husband get away with not helping with the kids! Maybe I shouldn't make myself responsible for everything! My body is not exactly responding very well and what is going to happen if I die? The kids are going to stop going to school?

I wonder if all women with Lupus think they can do it all and instead make themselves sick out of pride? There must be a reason women more than Men are affected with Lupus!

Monday, March 18, 2013

Questions, questions, questions

I have not blogged in so long! My body has been feeling like I have been hit by a truck! I was dying from sinus pain and joint aches. Pretty much a terrible flare.

I still haven't figured out this disease/diseases completely so when I went to see my rheumatologist he gave me two shots (one for pain and one for inflammation) but I don't even remember what they were called! Of course, Lupus Fog makes forget me just about everything! He also put me back on prednisone.

Well let me tell you that the next day I felt such relief in my face! The pain I had felt disappeared magically!

Fast forward 3 weeks later ...
I'm tapering off Prednisone and the Sinus Pain in my face is returning and I am starting to feel like crap again. The doctor had asked I get an X-ray of my sinuses And since I never want to leave the house (or more accurately too tired to leave) I haven't gotten the X-ray.

So, what do I do next? My next appointment is not for 3 more months. Do I ask for another appointment with the rheumatologist for another 2 shots of "whatever he gave me last time" or do I go see my primary care doctor and try to explain?

l feel like so much is left unsaid with this illness. I have been diagnosed with this illness for almost 2 years and l still have so many questions! This reminds me of the first time they sent me to the rheumatologist with a positive ANA and he told me not to worry-that I probably would never get Lupus. Then he shook my hand and walked but the door leaving me wondering what the hell he meant by that?!

That was over twelve years ago and I guess I did have something to worry about because I did get Lupus! That was ten years of wondering what the hell was wrong with me and going from one doctor to another looking for answers. I really did think that once l get the diagnosis all questions would be answered but I am far from that!