Prednisone: My Frenemy Part II

As I have said before, I am a teacher and I am two day from being free!!! Yes...I am 48 hours (give or take) from being able to sleep in and have to deal with my own kids for a change! I had been feeling so terrible lately with extreme fatigue, but I started Prednisone again last week and it gave me the necessary boost to make it through 8th grade Prom decorating, Powder Puff flag football, my daughters dance recital, 6th, 7th, and 8th grade students at the end of the school year, and everything else the last week of school brings for teachers. I have made it through 7 straight days of work without calling in. In fact, I haven't had to call in since starting the Prednisone.


Now, on one hand this "miracle drug" has allowed me to go about my life almost like a normal working mom these past two weeks, but on the other hand, I am at the highest weight ever in my life. I hate to dwell on this topic because it shouldn't really matter right? It does matter though. I just looked at my picture in the school yearbook and it is just depressing. I looked round and puffy and pretty much exhausted. It is B A D! Depression is something I struggle with so often and this weight gain and the physical changes I have gone through in the past two years do not make things easy. I had a picture of myself and my husband from two years ago on my filing cabinet and one student stood there shocked and said, "Wow...you looked so...so....," and couldn't quite finish that statement out of fear of hurting my feelings but I knew what she was thinking. I looked pretty and thin and now I don't.

Well, I guess that is life. A struggle to weigh the good with the bad. In order for me to get out of the house and work and take my kids to recitals, I have to deal with a lower self-esteem and bigger clothes. But, I do still wish I didn't have to make these choices. I wish I wasn't sick with this horrible illness. I hope that everyone out there realizes how lucky they are that they don't have to make these choices and appreciate their healthy lives.

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.

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!

Prednisone: My Frenemy

So, I am on my fourth week of Prednisone. I am down to 5mg a day and I have to say that I feel pretty good. Now, I am always afraid to  say that out loud because it always bites me in the ass later, but aside from some minor aches I feel good. I feel like I can finally breathe: like I could relax.

For a while there I was feeling so bad it was depressing. I was barking at everyone and crying for anything. I was feeling hopeless. Even when I went on the Lupus groups that usually make me feel better, I would get annoyed with anyone who tried to sound "positive" about living with Lupus. Living with constant pain was getting the better of me and I couldn't even enjoy the holidays. Thank God for Prednisone!

Now, of course I could already feel my new jeans starting to fit tighter and even though I haven't stepped on a scale, I could feel myself getting fatter. But, I could honestly say that's okay. I am okay with it. As long as I have even a day or two without extreme pain, I will deal with my fat arms and big belly. Maybe I could finally start going out walking again...one can only hope!