Tuesday, April 29, 2014


have you ever tried to explain what makes you cry?
I tried doing that this morning and telling my husband whats going on in my head, but I think I sound crazy!!!!! 
    I tried to explain how I don't have an ounce of strength to get up and do anything but my brain is telling me I have so much to do and my legs are laughing at me cause they don't want to go. Plus I feel like I have to worry about everyone and everything even though I know I can't be in control of it all. I worry about what people think what they say and how I look to them. I know i shouldn't that's crazy but that's my brain, and of course I can't even remember anything, but yet I'm still trying to figure out if I said something right or wrong to someone LAST WEEK
I am stressed over everything and anything.
Hms, eds, fibro, neuropathy,ileoanalpouch,arthritis,asthma,depression,spoonie,pain

Friday, April 25, 2014


So they finally got the blood work back and put me on the cellcept. I started it Monday evening after dinner and boy with in and hour did I feel it. I got dizzy and nauseous, I felt like I was plastered to the couch and then had to go to bed. The next morning was slow going, but by noon time I was feeling better. Of course I haven't felt any of the good effects from it because it will take about three weeks they said. So after that night I said I'm going to make sure my belly is completely full then I'll take the meds and so that's what I did and it wasn't as bad, and by the third night I didn't feel too dizzy at all. I guess it takes some getting used to, that's why I'm only on it so far once a day. The doctor said once I do blood work again and go see him and see how I'm handling it then he will up the dose to twice a day.
   I'm still very overwhelmed with all the pain in my bones and my muscles and I'm still extremely exhausted.
It seems like everything has become such a chore. I'm trying to get my husband to understand that I just can't do all this housework anymore, and do all the grocery shopping in one day. It seems like whenever I want to just chill with no noise and no one bothering me, he has a list this big. It drives me so crazy and whats even crazier he wants to do it, but just telling me all the things that need to be done and I know I can't do it all just hearing about it drives me insane, because I feel like it is my job as a woman to do the shopping with him so I could get things I like too, but instead it just stressed me out and we have been bickering about it all day. I can't seem to relax myself.I kinda feel smothered. I want to be somewhere where there is no noise, no tv's, no phones, no people, no one to bother me and no STRESS.
I'm so stressed out over being stressed out that I can't even remember why I'm stressed out... and it's stressing me out!THATS ME

Saturday, April 12, 2014


Tummy Trouble Part One Ways to improve digestion and eliminate stomach aches.

For as long as I could remember I have had stomach issues. I remember when I was about 15 and my parents had to bring me to emergency room cause of the pain and fever it was due to gastritis as they said.
I had high fever a swollen belly so swollen I couldn't zip my pants and of course I was constantly in the bathroom, but at that time I didn't know I had lupus. I was diagnosed with lupus when I was in my thirties.
I still have stomach issues gastritis, and who knows what else recently had a cat scan with and without contrast but of course there was nothing which is a good thing cause then you know it's probably
meds or just a lupus thing. Well my daughter had mentioned that maybe i should try the paleo diet.
well I said I don't need to lose any weight so I did some research on that and when I seen that you dont eat wheat, grains and oats and stuff like that I started researching gluten and things made with gluten and even oatmeal has gluten in it because the way its processed. So i decided to cut my oatmeal in the morning and my bread I was eating double fiber bread for lunch and sure enough the stomach problems have gotten a lot less.
I haven't cut all gluten I gotta have my cookie at night and I've eaten pasta no problem. I feel like I have given up so much food because of my issues. I'm also lactose intolerant so I can't eat any dairy not even Greek yogurt, but I am not deprived that's for sure.

Friday, April 11, 2014


Ok so I went to my rheumy this week and now I have to wait till blood work comes back that I had done today to make sure he could start me on cellcept. He told me about it that I am going to be taking it twice a day and it's an old med and pretty much like the other meds I've been on like imuran. I was on that for years.
 he also said I still should go get all those other tests I was supposed to get for benlysta just in case this don't work. So Tuesday I call his office and hopefully they'll call me in a script. Oh yeah I forgot the took me off my lefunimide now just on prednisone. I am looking foward to feeling better

Invisible Illness, Chronic Pain, Chronic Illness, Lupus Awareness, Fibromyalgia, Endometriosis, POTS, Hypermobility, Quotes, ecard
Yes this is how I feel everyday. I had to get dressed this morning to go get blood work then came home and back in the pjs

Friday, April 4, 2014


Well I started to set up all the tests I needed so I could go on the benlysta, but went to my primary care this week and he put a halt on it and would rather see me on cellcept because I am a cancer survivor. He said not enough testing to see if I should be on it. So he called my oncologist and asked him what he thought and told him what would you rather see her on and he said cellcept. So he called my rheumy and told him it was not a good idea to put me on benlysta and he said "OK" of course and so when I go to him on Monday hopefully he will start me on it. I didn't have to go through all that testing either. I'm so happy about that cause I  would have had to have a mri and a mra and i really can't handle those machines (very claustrophobic) although they would have given me meds to relax me.My primary is very caring he was so worried about it. I'm happy I have him.
   I really can't wait to be on anything at this point that makes me feel better. Too much pain and so exhausted all I keep hearing myself say is" I can't do this no more." well anyway that's my story