Gripe Session, Anyone? (Page 1)

Go right ahead - although u posted this awhile ago and I just noticed it.

Thanks sue! I just did not want to make anyone uncomfortable...But here goes!

I hate this [email protected] disease! I am sick of prednisone! I am sick of the 70 pounds I have gained!

i am sick of having my blood drawn. I am sick of being at the doctor's office every week.

i am sick of being sick!

Whew, I do feel better! Thanks,
ladybrannon

You said it

ditto..Ditto..Ditto......

Sharon

I feel exactly the same way.

The stress i'm under is driving me nuts.

I'm sick of being sick too and it's nice to have some people who appreciate that.

Jenn

I felt so much better aftet doing that!

Also, I wanted to say that I am sorry that I have not been on today...I have been praying to the porcelain gods all day. Yucko!

So another gripe...I hate throwing up. Have any of you ever sat down and tried to think of the one thing you hate most about this disease? Well, since every time I moved, I threw up...I thought about it a lot today...Here is what I came up with:

1) throwing up
2) mouth and nose sores
3) the severe joint pain (i placed this third because it is every single day and I really think I am so used to it...I don't consider it anything outstanding anymore, you know?

So, what would you say? I'm sure I mssed some things and I think talking about things helps all of us feel a bit better about ourselves!

Hugs,
ladybrannon

There is not any thing worse than that!!!! I told my husband today that I hate feeling so....Icky! But it still isn't as bad as throwing up!!! I threw up for 6mos with my first baby. I tried every thing anyone suggested to stop. I don't do lemons any more. I used to throw up after going to the dentist .When I get a stomach bug I throw up so much I end up at the emerg. I have come so..Close to passing out . It feels as if my whole insides are trying to come out. My rib cage hurts so... Bad. I had a nurse tell me once that you can break arib trowing up!! that's some powerfull mucles constricting in there..That's my 2% on the subject.

Help i'm the daughter of someone recently diagnosed with lupus or at least we think so. She was started on plaquinil in july & for the last 2 weeks very crappy. She knows she wouldn't feel better right away but she feels worse than ever. Help I think she is getting depressed what do I do???????????????????

Here I told lady b. To gripe and I haven't been on till today! Sorry!. Anyway, believe it or not I have never thrown up (except when I was a small child my mom said once). I have 2 kids, used to drink (in college) and just have this fear of it. I never heard that lupus has that as a symptom but glad I don't have that. Like lady b said, im used to the daily pain, but sometimes its embarrassing when I can't open something cause my fingers hurt to bad. I also hate the stomach problems (a bathroom has to be within close proximity) - and sometimes I hardly make it!

My meds seem to be keeping everything at bay for the most part. I lost weight tho instead of gaining and am sick of hearing how "skinny" I am. Really that does get old. People don't tell you how fat you are, why do they think its ok to say the other? I had a Dr. Appt today, but my kids forgot to give me the message and I had made the appt 3 months ago and just forgot - I feel terrible about that. I have to call tomorrow and apologize like crazy. I used to work in a doc office and that really screws up the schedule. He was a new rheumy too and I was a new patient

hope all is well with everyone!

Depression is very common for lupus patients. I suggest taking your mother to a counselor. You and other family members may want to join her. If it is lupus, it will effect everyone! I am very serious.

Also, you will need to tell your mother's rheumatologist.

Good luck,
ladybrannon

I get so tired of being tired!!!

The fatiuge is what really does me in. I work 8 hours a day on my feet and when I get home have to cook, clean and do laundry for the family. Don't get me wrong, they help me out alot, but I still feel it is my responsibility. So I tend to push myself too far, and my lupus starts to flare. So I find myself back on the steroids, and getting as much sleep as I can. I've learned to live with the day to day pain, and it is for the most part just a minor annoyance. But the fatiuge is killing me.



Kris

Isn't that the truth. I always like to say that I am sick of being sick and tired of being tired! Lol!

I found that taking a nap in the afternoon helps me when we have to go out, etc.

Hugs,
ladybrannon

I'm new, but I can identify with everything you all have said. I have been diagnosed for about three years now, but I think I actually had my first flare when I was 14. (i'm 42 now) my biggest gripe at the moment is the disgusting skin lesions. I've gotten to the point that i've had three of them get infected w/ a staph infection. The last one was the worst. When my rhuemy saw it he sent me straight to the emergency room. They lanced it & sent me to an infectious disease specialist who put me on iv antibiotics. For a week and a half, my husband had to pack and clean the wound and I had to give myself an iv every day. This was fun when we were trying to maintain a normal life and get ready for work every day. I did give in a couple of days and stay home. The last two times this happened, I ended up losing it in the emergency room and just crying because I hate this so much. Has anyone else had this problem with the lesions?Lizbet

I keep getting weird infections...Mainly due to my meds being such nasty immunosuppressants.

Right now, I have a staph infection in my nose...Such a joy putting antibiotics up my nose. *rolls eyes*

i am also (if you have read some of the other posts) trying to get rid of an h.Pylori infection.

What immunosuppressants are you on? This could be part of your problem. Have you spoken to your rheumy or dermatologist? Let them know how you feel.

Hugs,
ladybrannon

Thanks for the suggestion. My meds right now are plaquenil, celebrex, nexium,lisinopril,hctz, & allegra, none of which should be suppressing my immune system. My doctors are baffled as to why i've had these recurring staph infections. Besides those, i've had either upper respitory, kidney, or urinary tract infections for the past year. I don't think there has been a single month in the last year that I didn't have one kind of an infection or another. I don't understand it when lupus involves an overactive immune system. It's funny, though. People all around me can be sick with colds and the flu, and I won't get those. My body just goes for the big stuff. Any way, thanks for the ideas.
Lizbet

Hi lizbet521, and wellcome
I also took celibrex for over a year .First 100mg. And then it was up-ed to 200mg. When I was still having problems I went off of it and on to something else that didn't work!
I learned through lady brannon, that celibrex can cause flare ups in lupus patients.
Tou might want to talk to your doctor about this.......

Sharon

Hi lizbet,

i don't know if this will be any help but every time I get an infection I have to go on a pulse of prednisone. It is a heavy dose but only for about a week. I never get any of the side affects because i'm not on it long enough. I have a sinus infection this week and I still have to take perdnisone along with my antibiotic. Antiboitics are never enough for my system. I also agree with sharon about the celebrex, it is a sulfa drug and it can trigger flares so that can't be helping the infections.

Do you use any steroid creams for your skin? It's the only thing that keeps my skin from getting really bad. I hope this helped!

Keep smiling
jenn

~szeeba~

Griping...Doesn't it make you feel better?

I have the *hots* too. I cannot stand being hotter than 70 degrees period. If I am, I not only sweat, but I also get severe headaches and begin throwing up (violently). It has been that way for about 2 years now...Since I live in nc (hot and humid), the a/c bill is outrageous...Over $400.00 a month! Can I say that this sucks?

You are correct; the cold makes your joint hurt worse. I have the same problem...I also have raynaud's which really sucks because it kicks in at about 65 degrees. Thus, I have a tolerable window of about 5 degrees. *sigh* I don't think I am griping or whining anymore; I think I am b^tching. Lol!

Hugs to everyone,
ladybrannon

I know what you mean about not complaining, I feel like that's all I do sometimes. And i'm sure people get tired of hearing me. So I try not to say anything during the day unless it is really bad. At which point i'm usually going to the doc by then. Then starts all the meds! I hate it, I just wish there was someone that is around me all the time that knew what i'm going through! Not that I would wish this disease on anyone, but just the knowledge of what this disease does to people. Everyone knows what cancer does to people, why not lupus? There isn't a lot of difference, except lupus doesn't kill as fast as cancer! We get to go on in agony for years, and no body really knows it! Can you tell i'm having a really bad day? Thanks for listening.

Kris