How do you keep going?

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

LupieICURN
Regular Member


Date Joined Jan 2013
Total Posts : 47
   Posted 11/25/2013 12:04 AM (GMT -6)   
Hi fellow lupies!
I hope everyone is doing ok and having low pain levels! I've been having a really hard time lately and just want to know how do you all keep going? How do you keep telling yourself every day that it will get better? I've been struggling emotionally to want to keep going and keep taking my meds. I've been having terrible thoughts and it scares me. I'm only 25 and have had this for 2 years and I've just had enough. I've been on a ridiculous amount of meds, some work for a little while and then they either quit working or something happens to where I have to stop taking them. I feel like I get 2 steps forward and 3 steps back.
 
I just had a really tough ordeal a few weeks ago where I got a herpetic whitlow infection in my finger (its the herpes virus that causes cold sores, shingles, etc) and it took 2 ER trips (where I was treated terribly one of the times, b/c you know all chronic pain people want is drugs) and 2 different meds not working for over a week then I was finally admitted for IV meds. One of the docs thought they were going to have to amputate my finger! The worst part is I either acquired it from one of my patients or gave it to myself b/c I already get cold sores and that it can come back b/c I'm immunosuppressed.
 
My doc keeps telling me my job as an ICU nurse is obviously only making my symptoms worse (12 hour shifts, pulling on patients, on your feet all day, infectious people everywhere, etc). And I understand that but its my dream. I love my job. I love my coworkers. And I'm struggling just to make it to my 3 shifts a week. I don't want to give up my dreams b/c of this stupid disease. But b/c I know its only hurting me, I've been looking at other positions. I just don't know how to handle all the things that are coming at me.
 
And on a separate note, I want to have kids so badly but cannot b/c of the meds and I can barely take care of myself let alone a child. It just breaks my heart.
 
I guess I'm just asking for someone to give me their story and show me that its ok and I can make it through this. Its just hard for me to see the light at the end of the tunnel right now. I feel like I can't take one more pill, give myself one more shot, or cry one more tear over lupus. I don't want to wake up and think about lupus every day anymore. And I don't want people to feel sorry for me or have pity on me. I just want to give up.. cry

Nicole- 25, married, no children
Endometriosis, Lupus, Raynaud's, Degenerative Disc, Migraines
Meds- Multivitamin daily, Lo Loestrin Fe daily, Plaquenil daily, Prilosec daily, Lyrica BID, Folic acid daily, MTX injections weekly, Celebrex BID prn, Tylenol prn, Tramadol prn, Dilaudid prn, Zofran prn

~Don't worry about tomorrow, tomorrow will worry about itself. Every day has enough trouble~

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 11/25/2013 2:19 AM (GMT -6)   
(((((((Gentle hug)))))
Hang in there, honey.
It's rough when this stuff changes our dreams. I was a teacher for 10 years before I was diagnosed. My last two years was rough on me, but my health was more important to me. I mourned my job loss, but I knew it was for the best for my health.

I had to start seeing a therapist on how to deal with the change. I felt like I went from hero to zero in one day.
Maybe talking with a therapist who deals with chronic illness can help you?
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, Allergies, and benign familia tremors

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

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7720
   Posted 11/25/2013 6:54 PM (GMT -6)   
Is there any way you could do shorter shifts? I know the 3x 12-hrs sounds enticing, but I bet if you worked 3x 9-hrs you'd be able to get a more regular schedule going and you'd feel better.

One of the things that has been important in my 11+ years with Lupus is learning the importance of a regular schedule and deep, restorative sleep. Also I bet with 12-hr shifts your eating isn't as healthy as it could be.

I was rather bad off for a few years, but it can and does get better! I'm here to testify about that. I am now med-free (except for depression & insomnia, but those were pre-existing conditions for me).

Taking the meds as directed and taking care of yourself -- it can work, you can feel better, AND you can have children. You aren't as bad off as you are feeling right now -- it's okay to have a pity party from time to time, goodness knows I have.

But feelings are just feelings, they are not facts. Try small adjustments, see if you can't feel better. Dropping the 12-hr exaust-a-thons would be my first point of attack -- you get the idea, is there some other huge stressor you could cut back on?

Feel free to let us know specific symptoms & meds, maybe we can help with some suggestions!

Have a good week, don't worry it away.
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 11/26/2013 10:51 PM (GMT -6)   
Hi Nicole:

I'm sorry that you're having such a tough time with your lupus. The ups and down's of this disease can be so big at times. We all certainly understand what you're going thru with it.

I think Lynnwood made a great suggestion, if it is at all possible changing your working shifts would be a big help for you most likely. Another help would be to move to a less stressful environment the ICU is a stressful place to work. I know many nurses love working there because of the high energy, but all that energy and stress ISN'T good for your lupus. It's possible to make adjustments w/o having to totally give up your career.

As for having children, while the medications that you are currently are on, you may not be able to have a baby, that doesn't mean you won't come off them. We also had a member here who did take cellcept I believe while she was pregnant and did fine and had a healthy baby.

I started having symptoms at age 17, I was 22 when it was mentioned I might have lupus. I had many up periods where my health was good, and a lot of down periods where it was terrible. I managed to have a child at age 28, I had been married 8 years and had gone thru a lot physically to have her. I did very well thru the pregnancy, it was after her birth that I became ill.

My hubby was in the military and received orders to Italy. We were not allowed to travel there with him until he found a place for us to live. This base had no military housing, our daughter was 3 months old when he left she was 9 months old when we arrived. I was working full time, going to college full time and taking care of a baby on my own. Needless to say, I was in a terrible flare by the time we arrived in Italy.

Our whole tour in Italy I was desperately ill, I had no help and was sick as a dog. Once we returned to the states, we learned our daughter had a learning disability, and I devoted every waking moment to her care. Again, I'm sick as a dog from all the stress. When she turned 8 I was finally DX'd with lupus and they began treatment. I have to say for maybe 3 years I did pretty well, then I began to slip down hill. I've never been the same since.

Now, I'm sure you're wondering why I'm telling you this. I believe that I'm so sick because I was left untreated for 13 years. You however, are being treated and I truly believe that if you want to have a family you'll be able to have one. Please don't rule it out, make an appointment with a high risk OB and see what they have to say. Talk with your Rheumy about it, until they tell you it can't be done I wouldn't give up that dream.

One thing you do have to deal with is there is a possibility that you might pass this on to any children you may have. I would make sure you reconcile those feeling prior to having a baby. My daughter not only had the learning disability but she's struggled with a positive ANA of 1:640 and joint pain since she was 7. She does not have lupus, but she does struggle with joint pain and such. As for her learning disability I can't say it was caused by the lupus, but I do know that there have been several ladies post here whose children have had the same disability. Is it related to the lupus whose to say.

If you have the help you need when you have your kids I think you'll do great. Who knows, maybe if you have kids you'll want to give up your job. I stopped working full time once my daughter was in the 1st grade. The only down thing I have to say about my experience with my daughter is, she has NO memories of me being well. I became so ill so quickly that she doesn't remember me being the cookie MOM for girl scouts, or the Volunteer Coordinator for the Elementary School. She's handle things pretty well, as she's gotten older it's become harder. I missed her high school graduation, she found me unresponsive 3 days prior and I was on a vent in the ICU for her graduation.

She's in her Junior year at college and I'm praying that I'm still alive to see her graduation in 2015. She can be upset at times that my Dr's don't keep me comfortable enough pain wise, but she copes with it. IF, you had children and anything like whats happened to me, happens to you,, you and your hubby will handle things beautifully and your kids will understand. You just have to think positive and ask the questions, don't be afraid for hearing the answers.

As for how do I go on, well....... I have some very hard days. I just finished up radiation on warts that I've had on my thumbs since 2001. I now have radiation burns and my thumb hurt like the you know what, I've got two broken ribs, a very sore back, a terrible case of tendonitis in my feet, and my LGL leukemia seems to be kicking my rear end right now. Do I feel like giving up, you bet I do, it's NOT FAIR that I have to live like this at all. My pain is on a scale of 1-10 at a solid 8 I'd say at least 78% of my time, the rest maybe a 6 or so.

It's important to me to show my daughter that NO MATTER WHAT, you don't quit. That even when things are going bad and you are so sick that you feel like crawling into a gutter, there will be someone somewhere to help you out. I see a therapist weekly, I take prescribed pain meds on a daily basis, I try to limit the amount of stress I'm under and just plain and simple just try to make it thru the day.

I'm sleeping a lot right now, as my pain is so bad right now, but once I'm feeling better, I know that I'll be able to enjoy the things I normally do. Please, keep coming here are talking to us and know that we care and will listen always. Think about adjusting your hours, and maybe changing wards. Maybe think about a therapist to help you thru this as well. I know it seems NEVER ending and I HUGE blur on a Flare, but give it time, there are so many folks that have come here that get better and do great.

They don't always come back and let us know how they are doing, but I do know that Lynnwood is a prime example of taking her medication and pulling out of a terrible spot. I know she's off her medication and that's so fantastic. This could happen to you, try to be positive and think that things will improve and you'll be off your medications soon. Wishing you the best and I'll keep you in my prayers.

Hugs,
Barbara
DX- RA, Lupus, Fibro, LGL Leukemia, Pulmonary Hypertension, Bells Palsy, Gastroparsis, Blood Clots, Glaucoma, Chronic Pericarditis & Pleurisy, Severe Anemia. Way to many medications to list.

MizPiggy31
Regular Member


Date Joined Feb 2012
Total Posts : 114
   Posted 11/27/2013 3:51 PM (GMT -6)   
Hi Nicole,
 
I have a very good friend from High School that has Lupus.  She is married and was able to have two children even after doctors told her not to try for the second one.  I know she focused on getting as healthy as possible and when she felt her lupus was under control (best for her body) she and her husband decided to try for number two.
 
I would suggest the same for you.  Try to figure out the work issue first, get as healthy as possible and then worry about the babies.  It will all happen in time.
 
Happy Thanksgiving
 
Connie

LupieICURN
Regular Member


Date Joined Jan 2013
Total Posts : 47
   Posted 12/1/2013 11:18 PM (GMT -6)   
Hey everyone!!
I'm sitting here in tears just reading your replies. You are all an inspiration that I really can do this. I've been feeling a little better emotionally lately, I think because I had a mini meltdown to my husband and he's been giving me a little extra attention. I also had a long talk with my boss (who is very understanding when it comes to my situation b/c she has chronic pain also). I am unfortunately unable to work shorter shifts (b/c it messes up staffing) but I have actively been looking for a different job. So for now I'm trying to make it to work as much as possible, my boss is scheduling me so I can work every other day when possible and she also told me that even though I have no more FMLA available that I do not have to worry about my job. Luckily I have my coworkers backing me because today another pustule showed up on my finger. This is how the herpetic whitlow infection started in my finger the first time. So I guess I'll be calling the infectious disease doctor tomorrow and try to get a handle on it early this time. I really don't want to miss any more work!
 
I do have another question though.. how do you all deal with the overwhelming fatigue? In the last 2 years, I had only been off prednisone for 6 weeks and had to go back on. I have now been off since October 30th. Each time I've either tapered down or went off completely, I get this crazy fatigue (even worse than a normal day) to where I can barely drag myself out of bed. I can sleep for 12 hours and 3 or 4 hours later I could take a nap. I'm hurting pretty badly but do not want to go back on prednisone unless I feel like I just can't take it any longer. So is there something that can help with energy and fatigue without having to go back on the steroids?
 
I'm off for the night, gonna get some rest. Hope everyone had a wonderful Thanksgiving!
Nicole- 25, married, no children
Endometriosis, Lupus, Raynaud's, Degenerative Disc, Migraines
Meds- Multivitamin daily, Lo Loestrin Fe daily, Plaquenil daily, Prilosec daily, Lyrica BID, Folic acid daily, MTX injections weekly, Celebrex BID prn, Tylenol prn, Tramadol prn, Dilaudid prn, Zofran prn

~Don't worry about tomorrow, tomorrow will worry about itself. Every day has enough trouble~

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 12/3/2013 1:52 AM (GMT -6)   
I try to keep up my energy with B vitamins. I do folic acid, B6, B12, Biotin, calcium, and magnisium. I also throw in cranberry fruit extract to help prevent bladder issues.
Have you been checked for sleep issues? My sleep apnea causes problems at times.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, Allergies, and benign familia tremors

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

LupieICURN
Regular Member


Date Joined Jan 2013
Total Posts : 47
   Posted 12/4/2013 12:00 AM (GMT -6)   
Joy,
I've never had a sleep study. I've always had troubles sleeping even before lupus and all the meds. I was doing better when I started lyrica because my legs weren't constantly burning and feeling needle-like but now I just can't get to sleep, stay asleep, and by time I finally fall asleep, I end up sleeping til noon! My days off work are consumed by catching up on my sleep. I might talk to my rheumy about a sleep study or suggestions about sleep. I've tried melatonin, ambien, flexeril and pain meds.. some things work one night and not another. Lord only knows what the problem is! :)
Nicole- 25, married, no children
Endometriosis, Lupus, Raynaud's, Degenerative Disc, Migraines
Meds- Multivitamin daily, Lo Loestrin Fe daily, Plaquenil daily, Prilosec daily, Lyrica BID, Folic acid daily, MTX injections weekly, Celebrex BID prn, Tylenol prn, Tramadol prn, Dilaudid prn, Zofran prn

~Don't worry about tomorrow, tomorrow will worry about itself. Every day has enough trouble~

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 12/4/2013 12:14 AM (GMT -6)   
Stay away from melatonin it can cause flares in people with lupus.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, Allergies, and benign familia tremors

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 12/4/2013 10:08 PM (GMT -6)   
It sure sounds like you need a better sleep pattern. I would think doing a sleep study wouldn't hurt. It may tell you Rheumy a lot about what's happening once you do fall asleep.

I know that I have Obstructive and Central Sleep Apnea. I use a VPAP machine with 2 liters of oxygen bled into it whenever I'm sleeping.

Good luck and I hope they can figure out why you're not sleeping.

Hugs,
Barbara
DX- RA, Lupus, Fibro, LGL Leukemia, Pulmonary Hypertension, Bells Palsy, Gastroparsis, Blood Clots, Glaucoma, Chronic Pericarditis & Pleurisy, Severe Anemia. Way to many medications to list.

LupieICURN
Regular Member


Date Joined Jan 2013
Total Posts : 47
   Posted 12/5/2013 10:29 PM (GMT -6)   
Thanks everyone! I go to see a new rheumy on Monday for a second opinion so I will bring up all my sleep problems. And Joy, I did not realize melatonin could cause flares.. my PCP actually recommended it to me first :/ Good thing I'm not taking it anymore!
Nicole- 25, married, no children
Endometriosis, Lupus, Raynaud's, Degenerative Disc, Migraines
Meds- Multivitamin daily, Lo Loestrin Fe daily, Plaquenil daily, Prilosec daily, Lyrica BID, Folic acid daily, MTX injections weekly, Celebrex BID prn, Tylenol prn, Tramadol prn, Dilaudid prn, Zofran prn

~Don't worry about tomorrow, tomorrow will worry about itself. Every day has enough trouble~
New Topic Post Reply Printable Version
Forum Information
Currently it is Wednesday, June 20, 2018 1:27 PM (GMT -6)
There are a total of 2,973,723 posts in 326,123 threads.
View Active Threads


Who's Online
This forum has 161109 registered members. Please welcome our newest member, HPB22.
455 Guest(s), 11 Registered Member(s) are currently online.  Details
momto2boys, NicHostetler, Lwill351, HaleyBugs07, Gladioli66, cyn555, Saipan Paradise, Cyclone-ISU, Old Mike, countrymusic, LJohn23