Wednesday, August 26, 2015


I feel like its been for ages that I've been on here well actually it has been. Being so sick I couldn't function let alone write. So let me explain about my meds. The cellcept was really effecting me for the worse I had no idea because at first I was fine a little nauseous but nothing to crazy and as I got used to it it would get better and doc would raise it. He always starts me on low doses and then each time I would go to see him he'd raise it. Well before you know it once the medicine built up in my system it started to effect me like I had mentioned in the other posts about the stomach issues and diarrhea and not being able to eat or do anything for that matter. I lost about 15 pounds and so my son and husband figured out it was the meds. The doctor thought we were nuts but as soon as I went off it I was able to eat and my diarrhea went away and no more stomach issues at least from that. after I started feeling better i even got to go away on vacation to see my daughter and son in law in north carolina and my other children and grandchildren in new york. It was great but very exhausting little did I know my husband wanted me to go cause he was afraid I wouldn't ever be able to go. I guess he thought I was dying. He even called my doctors which I didn't know at the time and told them they better get together and figure something out because every night he would watch me sleep thinking I was going that night. Pretty scary I guess, but when your the sick one you don't have a clue.

Time went by and doctor wanted to know what he was going to put me on because I've been on it all.
So I told him that immuran worked for me about 10 or 15 years ago so why don't we give it a try and so we did. As usual he started me on a low dose 25mgs and now I'm on 125mgs. Things seemed to be fine for a while, but it seems my compliments haven't gone up much and need to be higher. Also I've been extremely tired like I can't move again and the other day I started feeling sick to my stomach again. OH NO NOT AGAIN. I'm not going through this again am I. well I stopped taking the extra 25mgs he said to take a few days ago and still was feeling the same so today I didn't  take it at all and no stomach ache so far. I'm not walking around holding my stomach and have to sit because I'm so pooped and sick. I'm going to see what happens and then I guess I'll call him and have to give him the news. Oh well I don't know what I'm going to take next we will have to wait and see.

Anyone have any ideas let me know I'm open for suggestionsBeen there, done that and it was really hard. The very reason I am not on pain meds.

Saturday, March 7, 2015

oh my aching stomach

you must think I'm a chronic complainer but since the last time I made a post February 7th I went to see my daughter in Port St Lucie and wanted to make sure I was doing good so I can babysit they had a wedding to go to and I was great felt good strong enough played with the kids and then came home on Sunday went with my husband to see my brother in law who's a snowbird came to visit got home that night and in the middle of the night my stomach started I was so sick. I thought I had food poisoning because I ate a Caesar salad at an Italian restaurant that's how bad it was, but then found out my daughter had the stomach flu the same time I did so that ruled out the food poisoning and then my granddaughter got it but they all got better and I still never got better we are now in March and today is actually the first day that I feel half decent. my stomach has been swollen I lost my desire to eat, had bad cramps in my stomach, had diarrhea for almost a month now, on and off one day I'm fine one day I have diarrhea so I've been living on Imodium AD then to the doctor like at least once a week. I think they're really getting sick of seeing me he said it was gastritis after the stomach bug but he sent me for an ultrasound on my gallbladder liver and pancreas anyway I don't have the results for that yet hopefully everything's okay and I'll get over this he also told me that because my immune system is so bad that it takes me so much longer to get better than the normal person and my symptoms are never the same as anybody else. I lost almost eight pounds this  past month. I've also been real dizzy and lightheaded this month too and so the doctor is weaning me off wellbutrin because my husband thinks that ever since I've been on that I've been light headed and dizzy and nauseous and feel faint all the time and I think it's working that I'm coming off of it cuz I'm not as bad as I was. I still have this really bad taste in my mouth that drives me crazy and everything I eat tastes funny so I haven't been enjoying food and I'm afraid to eat anything because I keep thinking I'm going to get cramps again so I don't know why but I've had this urge to make peanut butter chocolate chip cookies and I've had this gluten free recipe from Pinterest that my daughter gave me and so I made them they are very sweet or just could be my taste buds because they're so off, but they came out really good and they were really easy to make that's what I've been trying lately is to do as much gluten free us possible thinking it could help.

Tuesday, January 27, 2015


Well its been a crazy month. After I made my last post I went for stress test and the very next day I was at my doctors because of a cold that I had gotten after the pneumonia was gone anyway while I was there the cardiologist called my primary and they were scared they said that I had a major blockage in my heart so they rushed me to the hospital no going home because they were afraid I was going to have a heart attack. So we went and they admitted me and the next morning they did a cardiac cath and it was all fine no blocks at all.
All I have is the left bundle branch block which is probably from my lupus that's what the cardiologist said it's most likely destroying the nerves which I could live with and there is nothing they can do about it anyway except take the medicine to slow my heart rate down so I don't get to dizzy and lose my breath.
  They sent me home that evening and I didn't make it in the house had to call 911 because I got dizzy and was fainting. Made my husband put me on the ground cause I was going down. Well they took me back to the hospital and they admitted me again and they did every test under the sun even a carbon monoxide test.
They said it was a bad reaction from the anesthesia most likely again from the lupus and all the meds I take.
I'm home now and recooping it is still making me a little lightheaded when I do to much but other than that I'll live.   Well today is a new day and now I have urinary tract infection so back on antibiotic fun, fun, fun.
I'm so grateful that I have a wonderful hope for the future, so all this chronic sickness doesn't get me down because I know that soon our heavenly father is going to put an end to all sickness (Isaiah 33:24) and he will wipe away all the tears from faces there will be no more death no more pain the former things will pass away. ( revelation 21:3&4)