This is Lupus!

I have started following a few blogs of really remarkable women with Lupus that deal with it with a wonderful positive attitude and they look great. So I think what the hell is wrong with me!?

I can't go a day without complaining about something hurting or bitching about something!

Today, I didn't go to work because I became overwhelmed in the morning when I couldn't find shoes for my daughter and Clothes for my boys to go to school. The anxiety mixed in with the fatigue just took over and I had to call in sick. Another missed day-another pitiful check next month! So, l went back to bed and no one went to school except my husband. He actually threw it in my face that he was paying most of the bills now that I was "Choosing" to stay home so often now. Of course, he didn't get the Kids dressed and take them to school because that is my job! And, he wonders why I am overwhelmed and sick and tired and anxious!

So here I am in bed again in an inside out school shirt that belongs to my husband because none of my Clothes fit Comfortably anymore while my kids make more of a mess in the house! Am I the only Lupus patient that doesn't have it all together and Can't Keep the house clean and the laundry washed and not in 2 giant piles (clean/dirty) and can't keep her husband "Satisfied"?

Phew! I am a hot mess as they say! l want to be positive but the only thing I could do is laugh at myself so I don't cry because now on top of it all, I have breakthrough joint pain even though I already took Vicodin and Celebrex and Tramadol.

This is me with Lupus moon face and all!

Two Steps Forward and One Step Back

So I guess I upset some people with my last post but honestly I meant no harm. I have only had the diagnosis for as year and a half but have been dealing with symptoms and doctors for over 10 years! Shit, sometimes I just have to laugh so I don't cry! So sorry if I offended anyone!

Anyway, so I was so happy because I had made it to work for 6 straight days and then Tuesday came and kicked my ass. I couldn't get up to get my kids dressed. My poor husband was asking where their Clothes were, and I bit
head off! (I think that was the Prednisone talking) Seriously, I didn't care how he did it; I just wanted them gone so I could sleep -and sleep I did! All day into the night!

I am trying not to get down on myself about missing work but just knowing that they are docking me over $150 every day I can't teach gets me feeling like a failure. So, I try and remind myself and my family that I need to take it easy so I can make it to work.

Today, I made it to work. I had a pretty good day; I only yelled at and wrote up one 8th grader who couldn't find his seat. (Again, the Prednisone?) I Came home straight to bed and ordered my hubby to get us dinner and I don't feel guilty about it. I am doing what I have to to survive. That's all I have to say about that!

Weight gain and tv

This year I have gained so much weight it is starting to bother me. I don't diet and going up and down in sizes usually doesn't bother me too much. But, I am now getting bothered because skin is touching skin! I see and feel my double chin and rubbing thighs so I decide to do what I never do: diet and exercise.

Even more crazy I started using a fitness app that keeps track of my calories and exercise so I could lose weight. now, everyone knows prednisone makes you gain weight but I just realized just how much.

As I was using this app, I thought it would be hard to stay under the calorie limit to lose weight but day after day I was under the allowed calorie intake without even trying! So I should have been losing weight right? No! I am gaining?! What the hell!

So I came to the Conclusion that it isn't just that I live in bed watching TV without exercising that is making me fat, it is the medicine. I mean really, not just as an excuse and doing what everyone suggests, eating right and exercising, doesn't always work when you have lupus.

I say lay in bed and watch TV till your hearts' content and don't feel bad about it! You need your rest and if Prednisone makes you feel belts to hell with it if it makes you fat. Make yourself comfy and join Get Glue or Viggle and get something out of your forced bedrest. I do! I have earned over 100 stickers on Get Glue, and I am on my way to earning fine merchandise on Viggle just by watching TV.

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!

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!

A night out makes all the difference

Last week I went to work two days out of five. Needless to say, I was quite depressed. I stayed home on Valentine's Day and ruined my husband's chance to show off b y sending me flowers at work; they were delivered at home because I was sick. That beautiful arrangement did brighten my mood and raise my spirits.

The next day, I didn't go to work AGAIN because I was so tired and achy even though I had slept all day the day before, but when my husband came home from work he got me out of bed and told me he was taking me out. OUT. I didn't even Want to get out of bed, forget about bathing and getting ready! He looked so excited so I peeled myself out of bed and got ready not knowing what to expect.

I quickly realized my wonderful husband planned a fabulous night out- even getting a sitter for the entire evening! We went to a fancy restaurant, then a movie, and when I thought the night was over, he took me to a suite filled with roses and champagne! It was something out of a movie-so romantic!

That night, I felt normal; not like the pathetic sick person. I didn't even realize how much I needed to feel like a normal women. I didn't even talk about a single ache or pain or doctor appointment. It was beyond wonderful!

Addicted to all things TV

So I have been missing so much work lately. The pain in my muscles, joints, lupus fog, and anxiety is crippling me. I am not confined to my bed...again. 

I haven't been able to finish reading a novel in almost a year. Now, you have to keep in mind that I love reading and I teach reading and I usually read at the very least, one novel a month. I can't concentrate anymore; not enough to finish reading a novel. 

So, I have totally taken to watching every kind of television show/movie possible. Netflix is my new best friend and the DVR on my dish receiver records two show at one. I am of course going to switch to the Dish Hopper because it records something like 6 shows at once! 

Then there's Get Glue! Love, love it! I don't know why it excites me to earn stickers from watching TV and checking in, but it does. They will actually mail you the stickers and I am definitely going to get some kind of grown up sticker book. This is totally taking me back to when I was a kid and collected scratch and sniff, puffy, googly-eyed, and bedazzled stickers in a Sticker Book. 

If I didn't have TV to watch while resting, I would go insane. I am already depressed and super anxious so I think Teen Mom 2, Grey's Anatomy, Scandal, American Idol, New Girl, Glee, and many others are keeping me from cracking up and being dragged off to the insane asylum? Do they still have those? Oh yeah, there is also American Horror Story: Asylum. :-)