MEDICINE WAS KILLING ME

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 suggestions

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.

ABNORMAL POSITIVE STRESS TEST

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)

PNEUMONIA SYMPTOMS

Well sorry I haven't written so long I had pneumonia since the last time I wrote something, only I didn't realize it. I thought I had a cold like everyone else I was feeling sick, coughing had a fever and just felt weak and wanted to sleep. Anyway I had an appointment with my primary on Dec 2 to be put on antidepressant and he seen me and said What's wrong with you? Oh I also had no voice. So I told him and they checked me for a flu which I didn't have, but they said you could still get it even though I had a flu shot, but it was negative. So he said he was going to give me the strongest antibiotic and told me to go get a chest xray and so I went even though I sat in me car and was debating whether to go or not because I just wanted to be home in bed, but I did go and within a few hours doctor called and said it was pneumonia. He said I could go to hospital or try and take the antibiotics he gave me he said that's what they'd give you in hospital but in iv so I did stay home. I was sick for weeks even after the pneumonia was gone and antibiotics finished. In fact it was a whole month I was in the house just couldn't get my strength back was feeling weak and out of breath and lightheaded , vertigo. It seemed that just doing a little light house work would knock my socks off so I went back again to doctor and he examined me and gave me and ekg and told me I have a block in my heart. He called it a left bundle branch block. He wouldn't let me leave his office until he had an appointment to go straight to cardiologist it felt like I was there for hours anyway he got me in and I went straight there and seen the doctor and now I have to go to get a stress test the kind you lay down with because I cant exert myself and a electrocardiogram. I'm going Wednesday the 7th so we will see what happens. Also my primary gave me medicine to slow my heart rate down so it doesn't work to hard. Needless to say that's what's been going on in my life lately. 

What Are the Symptoms of Pneumonia?

The most common symptoms of pneumonia are:

• Cough (with some pneumonias you may cough up greenish or yellow mucus,
•  or even bloody mucus)
• Fever, which may be mild or high
• Shaking chills
• Shortness of breath, which may only occur when you climb stairs

Additional symptoms include:

• Sharp or stabbing chest pain that gets worse when you breathe deeply or cough
• Headache
• Excessive sweating and clammy skin
• Loss of appetite, low energy, and fatigue
• Confusion, especially in older people
• 
  

HOLISTIC MEDICINE

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.

THYROID RESULTS

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.

NEEDLE BIOPSY

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.

THE TRUTH ABOUT INVISIBLE ILLNESSES

My daughter text this comic to me and I'd thought I'd share it with you.
IT IS SO TRUE!!!

WE ARE STREAMING!!!

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.

NODULES

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.

STRONG BABY

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

TIME GOES BY

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

HEADACHE, DIZZY, NAUSEA, TIRED???????

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.

CELLCEPT HELPING MAYBE?

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.

EYEBROW THREADING

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. 

INCREASED CELLCEPT

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.
 

RASH AROUND EYES

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.

 This has taught me a good lesson and I need to listen to the voice in my head and STOP

doing so much. 

LUPUS AWARENESS MONTH

May is lupus awareness month put on the purple and let people know about it.go on to link to find out more   http://www.lupus.org/action/lupus-awareness-month

WHY ARE YOU CRYING?

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.

I'M SO DIZZY,,,,,,,,,,LIKE A WHIRLPOOL IT NEVER ENDS

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.
THATS ME