New here and super frustrated

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LupieICURN
Regular Member


Date Joined Jan 2013
Total Posts : 47
   Posted 1/23/2013 5:33 PM (GMT -6)   
Hi everyone!
I've been reading through everyone's posts and its making me feel a little better and like I'm not alone. I am 24 and was diagnosed with lupus in March of 2012. I was immediately started on plaquenil and prednisone. Since, I've tried multiple meds including methotrexate, luflonimide, imuran, and now recently started cellcept. I've only been on cellcept for 5 days and everytime we switch my meds I flare up and feel like I'm on nothing at all. My doc just called and upped my pred to 40mg a day and told me to stop being stubborn and take my morphine er. Luckily I do not have children to look after, but I am in school online and I work full time as an ICU nurse and work 12 hour shifts. This disease has impacted my life like I could have never imagined. I miss a lot of work (thank God for FMLA and fantastic coworkers) and my husband has to frequently take care of me. I feel like its just one thing after another. In the last year, I've been in the hospital 3 seperate stents. I've had pleurisy twice, pericarditis, migraines, confusion and forgetfulness, steroid injection in my hip, abdominal pain, ovarian cysts rupture, tonsils out, sepsis, SVT, kidney infection, it just never ends. I just want some reassurance that one day it will get better and I'm not going to be miserable forever. I've gained 20 lbs and have lost all confidence in myself and my abilities. This is just really starting to wear on me.. cry
Endometriosis 2011, Lupus & Raynaud's March 2012

Meds- Lo Loestrin Fe, Plaquenil, Prednisone, CellCept, Prilosec, Celebrex, Tramadol

oreo11
Regular Member


Date Joined Feb 2011
Total Posts : 399
   Posted 1/23/2013 9:00 PM (GMT -6)   
Please hang in there! You also have a considerable amount of support in this forum. It has helped me a great deal. I have had Lupus since 1997 (probably longer than that, but that was the year I was diagnosed). I have been where you are and the one thing that helped me the most was learning how to reach out to others and listen to my body. I always got trapped by more flares when I did too much or stayed out in the sun without protection. It has been a rollercoaster at times and not always easy. I look to each day as a blessing, and even when I feel miserable I look to the many things in my life that I am thankful for. I still want to scream my bloody head off sometimes and argue with the Universe as to "Why Me?" But I always come back to my center, breathe and feel grateful for being here now. For me, it has been a cycle of good days, bad days (bad months) and sometimes incredible months of feeling like my old self. Finding others who share in this journey helps. You realize that you are not alone.

Laura

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 1/23/2013 10:08 PM (GMT -6)   
Welcome to HW.
You have been through the ringer. I also see you probably push yourself too hard and have to pay for it later.
It seems to be a regular thing among us to try to do too much.
Try to ease some of the stress off yourself and relax some more.

When I was working I was pushing myself through 12 hour days teaching. I was killing myself with the stress and all. I'd have to crash for three days just to get through the next four. Hang in there.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Degenerative Disk and Facet Disease, and Allergies

When life throws you lemons....
Pick them up and throw them right back at them! :))

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 1/23/2013 10:43 PM (GMT -6)   
Hi and welcome to our family, you will find we all "get it" when it comes to dealing with lupus and it's ups and downs.

Sounds like you've been through a lot, as Joy mentioned you may be pushing yourself to hard. I know one of the hardest things we have to learn, is to listen to our bodies and act on what's it telling us.

Lupus varies greatly between patients, some folks have mild lupus and rarely have symptoms and can be on NO medication. For those of us who have lupus on the severe side have tried loads of different medications.

I'm one of those people who is on the severe side. I have taken all available drugs to treat lupus except for gold injections. If you were to take my daily dose of prednisone over the past 11 years and 9 months, I've been taking around over 25mgs of prednisone daily of the stuff for that long.

I have most of the symptoms that prednisone can cause. I've gained weight, have a huge moon face, a hump on my back, bruising, thinning skin, osteoporosis, myopathy, and the list goes on.

I like Laura try to find something I can be thankful for. I can tell you that it is possible to go into remission, many here have done so. Do not to give up, once your Dr gets you on the correct dosage of meds you could go into remission. It's true there isn't a cure for lupus but it can become quiet and you could be back to your old self.

The most important thing is to listen to your body and if you need to rest then thats what you should do. Eat healthy and get some regular exercise, even if it's just walking for 1/2 hour daily. Take your medications as prescribed, and make sure you have a good Rheumy treating you. I have so many specialist I'm lucky that my PCP keeps track of all of them.

Please feel free to ask any questions and vent away here. We all are here to help each other. Wishing you the best, looking forward to getting to know you better.

Hugs,
Barbara

LupieICURN
Regular Member


Date Joined Jan 2013
Total Posts : 47
   Posted 1/23/2013 11:47 PM (GMT -6)   
Thank you guys so much! I'm sitting here crying reading your replies and encouragement. I know I push myself too far and I don't know why I continue to do it. I guess because I feel like I have an obligation to my patients and my coworkers to be there for them, even if I'm not 100%. I've never wanted to be anything but a nurse and I've finally found the place that I absolutely love and I feel like its slowly slipping through my fingers. I feel like some days I just can't do my job. Or when I push myself so hard and I get to my car after 13 hours of work, I find myself crying all the way home just from the pain. I don't want to give up on my dreams just because of this stupid disease.

I not only push myself at work though, I push myself at home. I have a wonderful husband that does everything in his power to help me but its hard because he works swing shift 6 days a week. He puts in overtime to make up for my days that I miss. With all the working he's doing I really don't HAVE to work but I do because I love it and I feel guilty if it was just him working his butt off. With him working so much, its hard for him to help with house work because he's trying to maintain our vehicles, taking care of the outside of our house, cook when I have to work and just plain have some down time for himself. I feel like I can't ask much more of him. So I've been trying to learn to let housework go by the waist side and just do it little by little when I can.

Luckily I go to school online so I can lay in bed and read my assignments or sit in the recliner and not have to physically go to class. I'm currently getting my bachelor's in nursing and want to go straight into my master's. I've been doing this because I know I cannot do floor nursing forever because if my body is revolting this bad already and I'm 24, I don't want to think of 50. I just don't want to have to give up my dreams because I physically cannot do it.

As for my rheumy, I absolutely love her. She's trying her hardest to help me but I am one of 4 of her patients that has lupus. The rest are RA, etc. I am getting a second opinion next week, not because I don't trust her, its just I want someone else to look at the big picture and maybe see something we're not.

I greatly appreciate the love and it warms my heart to think someone in the world out there cares about me blush I pray for less painful days and nights for all of us and I will keep up with you guys! Much love ~Nicole
Endometriosis 2011, Lupus & Raynaud's March 2012

Meds- Lo Loestrin Fe, Plaquenil, Prednisone, CellCept, Prilosec, Celebrex, Tramadol

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 1/24/2013 12:22 AM (GMT -6)   
Nicole,

I can totally relate about giving up your job. None of us want to or those of us who have had to give up our dreams. Lupus can take a lot from us, but like I said in my post, if your Rheumy can get you on the correct mix things can improve a lot for you.

Trying to work full time and go to school is tough, I know I've been there. I'm gonna guess that your husband doesn't mind filling in the gaps. I don't know how long you've been married, but I can say this, when I started to get real bad and had to quit my job, I offered my hubby a chance to divorce me. His reply was our vows were in sickness and in health, till death do us part. He asked if the places were reversed wouldn't I be caring for him.

I was working and caring for our 3 yr old daughter and going to school full time, all the stress just made me sicker. Of course moving every few years didn't help much. When we moved out east in 2001, I was given my formal DX. My degree is in banking and finance, I had so many dreams of what I wanted to do. However, I could do only so much, so I elected to work part time, be a full time Mom, and learned to let stuff wait around the house. As long as the house wasn't dirty, a little clutter never hurt anyone.

Maybe until your meds fully kick in, you could cut back your hours for a bit. See what your Dr thinks and give the meds time to work. You may improve so much that you'll be able to return to work full time.

Try not to get to discouraged, if you feel uncertain about your hubby's feelings, then let him know, maybe talking will help ease your mind. If you feel it's necessary maybe you could both talk with a therapist.

Chronic illnesses and dealing with pain can equal depression, are you taking anything for depression? I can't speak for the others here but I know I deal with MAJOR issues of feeling guilty or being a burden, not being a good enough mom and wife. I'm certain your hubby loves you and wants only the best for you, but men normally aren't that great at expressing their feelings.

Keep us updated and try not to fret to much, the stress will only make you feel worse. I'm not trying to make light of your feelings, I just want to encourage you to give it some more time to work and get your second opinion from this Rheumy then make your decisions then.


Hugs,
Barbara
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