Monday, December 1, 2014


I have to say I love going to this doctor. I have gotten more answers in a week than I have had in ages. Really I'm not kidding. He told me why my left eye goes blind every so often...he says when I'm flaring the blood vessels in the brain constrict from inflammation how about that.... Doctors sent me everywhere for all different tests which I understand they have to check it all out, but he gave me an answer.....this week he made me more herbs i'm still low in serotonin and progesterone and he added something in it to help with ibs and sleep. He also gave me these little things in my ear to pinch everyday for a week. they kinda feel like a stick in the ear but it is to detox my liver, help my kidney function ,and to trigger the brain to work better and inflammation also he put one in there to help sleep next week we will switch ears.

Friday, November 28, 2014


YES happy to say I went through the biospy and it wasn't so bad although I did take a xanex before the procedure which helped, and the staff was very nice. It was guided with ultra sound and over within 15 minutes. Well Wednesday this week I went to endocrinologist and he said it was benign just need to check blood wood in 6 months and have ultrasound in a year. That was the best news for me being that the last time I had a biopsy it was cancer only it was the breast. Any way my friend who works for an acupuncturist
made me go in and see him because she hasn't liked the way I looked so I went to see him the first time and he made me some herbs to drink but was not able to do anything else because of my inflammation. The inflammation is supposed to go down with the herbs. Then he will be able to do more. Of course they tell you to continue to listen to your doctors and take your meds as prescribed because this is just to help you through it. I must say it is a very relaxing place like going to a spa so if you could and have the ability to go I would recommend it. I have been on the herbs almost a week yes they taste gross, but the last two days I actually felt happy which I feel like I haven't in a long time which has to do with stress, anxiety and my lupus. Also I only got up in the middle of the night twice to go to the bathroom. AMAZING!!! USUALLY ITS EVERY 2 HOURS LIKE CLOCKWORK.... So whatever he's putting in there I think is helping. That's another reason why I don't feel good as he says the good energy goes in but because of autoimmune system it has nowhere to go and just sits in the stomach that's why I can't pee right and I'm always tired and achy.
So we shall see what happens this week. I'm very hopeful and trying to stay positive because I would really like a measure of life back at least a little.

Tuesday, November 4, 2014


So I went to endocrinologist on Thursday  and he said I have an enlarged thyroid which means it a goiter, not like you can see it or anything I wouldn't have known if that cat  scan wasn't done. The reason why its enlarged is that I have more than one lump in there and they are big. One is bigger than 1.5 cm. He said it hasn't affected my hormones because the tsh is perfectly fine, so he gave me three options, some people like to just remove the whole thyroid, or you can do nothing and check it in 6 months and see what happens or you can get a needle biopsy which would be what he recommends. I told him my primary said its not cancerous don't worry. Since that is a big worry for me because in 2006 I  had breast cancer and a mastectomy and reconstruction and chemo and I had the kind of cancer that was aggressive meaning it can show up anywhere at anytime. so that was my concern and he told me that my primary can not say that unless he was some kind of higher power that knows these things. So now I have to wait to be set up by my primary docs office to get this done. I should not have looked on you tube for this because now i'm even more scared to do it but I know I really don't have a choice and if I could go through all that I have been through with cancer and chemo I could do this. I just have to suck it up and close my eyes and be a big girl.So needless to say I have been a crazy stressed out person. I also went to my rhuemy the same day and no change with blood work not any better and he doesn't want to increase my meds until he knows whats going on with the thyroid. It's nice to know that they all work together. I will keep you posted.Fibromyalgia/ Chronic illness

Tuesday, October 28, 2014


My daughter text this comic to me and I'd thought I'd share it with you.

Friday, October 10, 2014


Well it's official we finally did it. We have been trying to see how to cut the bills for a while trying to see how to get rid of cable. Well we had triple play xfinity and so all we really needed was the internet because we do get free basic cable through our condo association, but it seems that every time my husband would get on the phone with them they made it sound like we couldn't do it. I finally got this lady who helped us out and all we need is the box that unscrambles the cable and that's what we did. even though we have hdtv it doesn't come in hd we switch it over to antenna and it looks great plus we bought a blu ray dvd player and it's amazing cause now we get neflix and amazon prime and pandora and lots of other goodys that work through it. So in the long run we didn't give up anything but the big bill, and i'm happy about that.

Tuesday, September 16, 2014


Well it never ends, before I was taking cellcept my doc has sent me for a mess of tests one was a chest xray.
So I had went and  it showed I had a nodule on my lung so of course being a cancer survivor I was let's say a little stressed. So I had to go for a cat scan and see what was going on. well I went and it all turned out fine they said just check it every 6 months to make sure it doesn't grow.
   When I went for that cat scan they found a nodule in my thyroid so doc wanted me to get an ultra sound.
I went and just got back results on that and i have them in both thyroids so now I have to see an endocrinologist. I thought I was stressed with the lung nodule hahahaha now I'm more stressed and from what I understand alot of people get nodules, but also when you have one autoimmune disease you tend to get others and I was looking online about thyroid nodules and it had a few different things one disease is hyperthyroidism and some of the symptoms is extreme tiredness same as lupus and intolerance to heat, muscle aches, hard time climbing steps, weight loss anxiety and heart racing and loss of sleep all of which I experience but that could be due to my lupus and fibromyalgia we will see.

Monday, September 15, 2014


This is baby Michael I call him Mikey. I say he's so strong cause in this video he is less than three weeks old
and he is already turning over. It happened last week when we had the super moon I believe it was Monday anyway my daughter had recorded it because he did it like three times in one night. The nurse had come earlier that day and said to do tummy time with him at night it gets them tired and maybe sleep longer so that what she was doing when he turned over

Saturday, September 13, 2014


So sorry it has been a while. Actually a long while. Alot has been happening around here.
I'm finally up to 2000 mgs of cellcept and have been to see rheumy a couple of times since then and no change complements are still low and not budging. This has been one bad flare that don't want to leave, but I'm not giving up. Still got to live some kind of life this summer we had a babyq for my daughter and son in law who just had their third child IT'S A BOY 10 LBS 11OZ 22 AND 1/4 INCHES. My first grandson now i have 6 grand daughters 1 grandson and a grand-baby on the way due in December.

  I haven't written so long because my brain is burnt. I can't even think anymore.  Anyway here a little entertainment that we had at our babyq all the kids sang to the parents to be

Wednesday, July 9, 2014


I think it's funny these are all my symptoms for the past few days. I don't know if it's the cellcept or if it's the neurontin that the doctor raised to 300 mgs, but if you ever try to Google those symptoms there's hundreds of diseases that it could be. I give the doctors lots of credit for having to deal with patients that have all these crazy symptoms. hey I could even have a virus so who knows. I'm going to try a few different things to see if it works first of all I haven't been eating in the morning before i take my meds so that maybe it i'm going to try and eat first thing tomorrow and see if that helps. Also I have been stressed out I guess and so that might be another reason that this is happening. I know I can't stop the stress, but I cant try hard to take it easier and not be so crazy about everything. I need to remember that it will get done with or without me.
I Live in my pajamas

Saturday, June 14, 2014


So I went to my rheumy this week my compliments are still low which means my lupus is still flaring,
Doc upped me to 1500mgs a day which is three pills and then in three weeks I'm going to do my blood work again and if its still low he will raise it to two thousand a day which is pretty normal. hopefully it will work!!!!!!! it definitely has improved some I'm able to get out of bed and get dressed and even do some chores. I feel like everything needs to be done around my house and just can't do it all anymore.I'm gonna have to go through one thing at a time and straighten things out and throw alot of things out. I hate messes and my ocd is getting to me.
      Anyway my rash started coming back on my face again. It feels so strange it's like bags of water on my eyelids that's how it starts then gets itchy and burns so I started to put a little cortizone cream around it. the dermatologist said as long as you don't get it in the eye its ok but thats what she recommends. I have to say it works. I feel it going away already.
     Last night had a fun night even though it took every ounce of strength I can't say no to seeing my grand kids that's what brings a smile to my face. So my son and daughter in law dropped the three girls off and the two oldest Layla and Angie made a tent and was hanging out playing camping with flash lights and stuff and the baby was very cranky. I felt so bad, but she's always with her mommy and I think she is extremely attached. I hate when they cry makes me feel bad, but after a while she chilled out and was smiling she is 4 months old her name is Juliana they are all little dolls.
     Can't wait to feel half  way normal again.


Monday, June 2, 2014


I got my eyebrows threaded for the first time ever. My dermatologist recommended that I do that instead of waxing because there is no chemicals and with sensitive skin it's better and she was right. I didn't even get red from it. It was over in minutes maybe seconds each eye. it was that fast. I went to a place that was really family oriented a fun type of place where they do everything hair, waxing threading, clothing, jewelry, facials, . and more. I don't think I'll ever get my eyebrows waxed again. 

Friday, May 23, 2014


Finally, the doc upped the cellcept. I'm now on 1000 mgs which is still a little, but like he says I'm very sensitive to meds and if he would have giving me the whole dose at once in two days I would have called him and told him to get me off this stuff. So anyway I take one in morning and one in evening and I can't wait till he increases again because I would really like to feel better. I am still exhausted can't get myself going. I find myself getting up after nine in the morning because no matter how tired I am I can't fall asleep at night. I have been extremely emotional I don't know if I'm suffering depression now or it's just from not feeling good.


This has been an incredible two weeks this week the rash around my eyes got so bad I had to see dermatologist she said it was the lupus, I don't ever remember having it this bad. It was and still is itchy and it was burning. When it was at its peak it looked like I belong in the jungle. I mean ugly. So make sure you stay covered out there when they say wear sunscreen and a hat and glasses they ain't kidding, especially if your photosensitive. It really seems like I have to stay indoors during the day because I live in Florida and it's already 90 degrees out crazy right.This has been so uncomfortable.
doing so much. 

Friday, May 16, 2014

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 

Saturday, March 22, 2014


Its been a while since I wrote anything. I have been so tired (hahaha) who isn't that has lupus. I feel like I've been flaring for over a year now. I can't seem to get my complements back up. That's how my rheumy knows I'm flaring. Well anyway he figured my meds are no longer working. I have been on lefunimide 20mgs now for about seven years or so and of course prednisone this past year I've been up and down on it and now doc says that's not working either so I'm back down to five mgs. He wants to give benlysta a try, and I think that sounds great at this point I will do whatever I need to do to start feeling better. So there is a list of stuff I need to get done before going on it and that's if my insurance covers it, but if not he said they will fill out some forms to get me help to pay for it. I need to see my neurologist to make sure its not affecting central nervous system, I have to make sure I'm not suicidal and I had to get tb test and chest xray. So far got the tb test. Going Wednesday to neurologist. Xray Friday and have to see my primary week after. hopefully after that it's a go. I have been reading alot about others on it and they are doing great. I even heard my husbands cousin is on it and she feels great and my daughter was telling me about someone she knows mother that has been on it and doing good. So I'm hoping for good results I will keep you posted let you know how it's going.