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Sjogrens Topics => Living With Sjogren's => Topic started by: Kristina09 on April 10, 2018, 05:54:53 PM

Title: Overwhelmed
Post by: Kristina09 on April 10, 2018, 05:54:53 PM
Went to the rheumatologist, he wants me to try and see if I can get into a medical trial for Sj?gren?s. He wants me to start methotrexate for lupus. He wants me to do a lot of things that I knew were coming but the level of his concern for me was much higher than the previous visits.  I know I haven?t been feeling well lately.  Already going per diem at work. If I go on methotrexate I can not continue working where I do now or doing what I love in my career. The financial toll, the emotional toll. Just feeling like I?m drowning. He gave me a shot for pain yesterday because I was in so much pain and inflammation which upset my husband and kids to see me like that. I told my mom about the visit and changes and she cried, so I didn?t want to tell anyone else. I lie and say everything is fine. My question is how do you cope when you feel overwhelmed by bad news?
Title: Re: Overwhelmed
Post by: cccourt1942 on April 10, 2018, 06:19:56 PM
You did it. You came here.  Can’t help you.  We ARE here.   We do HEAR YOU.  STAY STRONG AS YOU CAN.  One day at a time!   ccc
Title: Re: Overwhelmed
Post by: araminta on April 11, 2018, 02:48:12 AM
I would suggest (though of course I don't know all the details of your case) that you don't make any sudden decision about what you're going to do, especially about your work.   I can understand you feel overwhelmed at the moment, who wouldn't.   However that's not the best state of mind to be in if you need to make important decisions.

Can you somehow give yourself a bit of space and time?   Would it be possible for you to take a few days off work?   Is there a friend you could talk to, or maybe a counsellor you could visit?   When we're in that panicky state we don't usually see all the options that are open to us, and another point of view from someone you trust could help.

And as ccourt says, we are here and listening to you.
Title: Re: Overwhelmed
Post by: Kristina09 on April 11, 2018, 06:38:28 AM
Going per diem because I can?t work my full time schedule and it?s the only way I won?t get into trouble regarding absences. My job has been so supportive with me so far but there?s a limit. I don?t really have anyone because the few people that I have I?m very close to and they don?t really understand or I don?t want to over burden them. I can?t take time off due to financial stresses from missing work from being sick. I was in the hospital recently with pyelonephritis. Still suffering financially  I?ve always been very independent. Maybe that?s my problem as well. I try to take care of everyone and everything.  I feel better just talking to all of you to be honest.  It helps to say these things out loud and to get everyone?s feed back.  Very few people know my medical issues. They know I get sick and I limp because my knee is injured but they don?t know specifics.  Believe or not I?m a very private person. You are correct. I shouldn?t make decisions when I?m panicking. I need to use that advice.
Title: Re: Overwhelmed
Post by: Kristina09 on April 11, 2018, 06:47:33 AM
Does anyone here not work or work decreases hours?  If so how did you decide?
Title: Re: Overwhelmed
Post by: Joe S. on April 11, 2018, 08:32:26 AM
I had lost my full time job (Work was moved to India) and found a part time contract job that I truly loved. It was becoming harder and harder to make it through the day. I had a class in "Solar Room" and the heat over whelmed me. After class it took me two hours to recover in the parking lot before I felt safe to drive home. When I got home, I was told that my mother was hospitalized. I took a leave from work to take care of her/be with her, the last few months of her life. During that period I decided that I had to quit work. I came home for laundry, put our dog to sleep, and drove back for moms death. I called work and told them that I quit later that day.
Title: Re: Overwhelmed
Post by: lorigacc on April 11, 2018, 11:22:01 AM
  I take one day at a time.  It was my hope to be retired by now...but because I need the medical coverage...I'm still working, and find each day to be a challenge. so....still here and plugging away...but taking one day at a time, and giving it to God.
Title: Re: Overwhelmed
Post by: cccourt1942 on April 11, 2018, 12:18:41 PM
Kristina,
     Tell us why taking Methotrexate will cause you to quit work.  I have the handouts on the drug right now.  The Rheumy wants me on it...but leaves decision to me.  My deal is I believe my present discomfort (I don't believe...I KNOW) is from something else entirely.  I don't want to begin a stronger drug until my other aggravation is tended to.  And that aggravation will require surgery..set for mid July.  So I'm buying time till after that to make my final metho decision.
     I am nearly three times your age.  I can't advise you about quitting work at this age.  Araminta is spot on though.  You do sound frazzled. 
     Is Metho the only drug the rheumy wants you to take...or I guess I mean, which drug is it replacing?? Lots of holes between per diem/contract type work and quitting....I think.  But I don't know.  All I know is I MADE myself work until retirement.  I had no idea what was wrong with me.  Your disease is advancing much faster and at a younger age than mine did. Plus....as you well know, you are Lupus positive too. Maybe some of the Lupus members can dive in here.

Good luck dear...we're here,
Courtenay
Title: Re: Overwhelmed
Post by: araminta on April 11, 2018, 01:50:06 PM
Being hard-headed about this, it seems to me your husband and your mother are going to have to get over their first upset/tearful reactions, and give you a bit of emotional and practical support.  You say people close to you "don't understand" -  why not?   From what you're saying, you yourself may be part of the problem here - you say you are independent, try to take care of everything, don't want to burden people.   But nobody can be like that all the time, we all need each other, especially at difficult times like this.   Kristina, I think you maybe need to acknowledge that you require some extra support, you're carrying far too much on your own. 

I know from personal experience that it is difficult to change the dynamic of a relationship quickly - for instance when my mother became very disabled, but was refusing to get extra help in, and relying too much on me, I found it so hard to sit with her and say that I was not going to continue to do what I had been doing.   But it was necessary and in the end I managed it, and things became easier.   I suspect it won't be easy for you to change how things are between you and the people close to you, but it seems to me that sooner or later it will need to happen.







Title: Re: Overwhelmed
Post by: Kristina09 on April 11, 2018, 02:46:57 PM
I am a critical care nurse so taking methotrexate will put me in danger of getting all of the very contagious bacterial and viruses some of the patients have, my job has already moved me to the cvcicu where the patients are not as infected for the most part because they are surgical patients and the unit is smaller so I don?t have to walk as much. But my rheumatologist has advised me on the dangers of getting sick. So that is in the future but you are right I do have a lot of my shoulders since my father passed I took care of my mother for a while. I always supported everyone and I do have a problem. My relationships with my husband and mother have been built on me being the strong one and not needing much help and now I find I need more and more and you are right hat needs to change. So as per diem I still work the same hours I?m just not obligated by a schedule ahead of time to work them. Full time I?m scheduled 3 nights a week a month in advance.  Per diem I?m scheduled 1 night a week and I fill in the rest as I go so that if I don?t feel well I?m not calling out. Being a nurse does not give me more knowledge on Sj?gren?s.  I?m positive everyone here knows more about it than I do. My coworkers don?t even know I have it because none of them know what it is.  And that?s a shame that it so common but so many are unaware of it.  Even in he medical field
Title: Re: Overwhelmed
Post by: Kristina09 on April 11, 2018, 02:50:09 PM
For my family to see me sick has always been hard for them which does make it harder on me. My husband physically takes care of me and the kids but emotionally he doesn?t know where to start and financially I make more, always have, so I carry the weight. I guess I panic at that thought. I should have explained that earlier too.  It?s new to me to open up so it?s kind of just flowing out unorganized.
Title: Re: Overwhelmed
Post by: SunshineDaydream on April 11, 2018, 04:57:55 PM
How long have you been on plaquenil? Did you explained your financial concerns to your doctor and inquire about other options that may enable you to continue working in your current environment?
Title: Re: Overwhelmed
Post by: Kristina09 on April 11, 2018, 05:12:46 PM
Ive been on plaquenil for 4 yrs. I did explain. He?s willing to help me out if I?m ever without insurance. He expressed the need for me to still follow up when I?m not feeling well and for my appts. I stocked up on meds because I will have a month lapse in insurance waiting to get onto my husbands insurance. I?ve been looking into other jobs that I can do per diem as well that are outside of the hospital. Maybe more administrative instead of clinical. It?s hard for me because I love taking care of people and to lose that at anytime I would lose part of myself. It has become my identity after 16 yrs.  sounds egotistical I suppose but it?s what I love to do. I?m happy to be on here and listen to everyone?s stories about how they handled their life changes.  The advice is invaluable.
Title: Re: Overwhelmed
Post by: SunshineDaydream on April 11, 2018, 06:19:41 PM
Oh, okay, bummer. I was hoping you had only been on plaquenil for a short time so maybe low dose steroid for a short time as a bridge until plaquenil had a chance to fully kick in would be an option but . . . no go on that idea.

Well, I totally get where you are coming from on changing gears for work. I am used to working full time in a high demand career for which I spent a lot of money on an advanced degree 20+ years ago. Now I am working on a contract basis from home and far from full-time. My job options heavily involve reading and writing and with my crappy eyes I just can't do it to the extent necessary to commit to a full time position. I guess I've been semi-retired for a few years now. It really does affect identity and self esteem to involuntarily be in this position.

I was thinking maybe working for an insurance company or personal injury law firm would work for you, but those typically aren't per diem jobs. Maybe medical transcription?

Title: Re: Overwhelmed
Post by: Kristina09 on April 11, 2018, 06:53:19 PM
Good idea.  I?ll look into it.  Thank you.
Title: Re: Overwhelmed
Post by: irish on April 11, 2018, 08:22:59 PM
I have been on Methotrexate at one time and I had no problem working. My son has been on 25 mgn a day for 3 years and he works in commercial construction which is demanding. In am guessing that you are really overwhelmed by all that is going on and we all understand that.

Sometimes a person just has to as for help....such as asking for a week off to start on the methotrexate and at the same time check out with social services at the hospital or clinic, county, etc to see what services there are to help you through this rough patch. Also, go on line and check on drug companies who offer cut rate on their meds. Ask you pharmacist and your doctor also. It time to make the change in your treatment to improve your life.

Methotrexate is a very popular drug for autoimmune diseases and people have had tremendous luck. If it doesn't work, dont give up as there are quite a few others that can be tried. We all have to go through this trial and error so to speak. Also, you are stretched thin and at the end of your rope you might want to ask you doc about low dose antidepressant to help sleep. You are probably depressed also as chronic illness drags us down and sjogrens and lupus patients are affected with anxiety and depression very often. Hang in there, you will make it. It is tough but getting the right treatment and some sleep can help a lot. Irish
Title: Re: Overwhelmed
Post by: Kristina09 on April 11, 2018, 09:03:50 PM
Thank you Irish, the things I?ve heard and researched about the med are scary.  I?m glad u told me about you and your sons experience. That makes me feel better.  And I agree with you.
Title: Re: Overwhelmed
Post by: araminta on April 12, 2018, 02:45:32 AM
It might be worth considering if there are any aspects of your life you could simplify or delegate.   For instance are there times when you mother might be able to look after the children for a day or two?   Who does the shopping - if it's you, could someone else do it?   Are there any outgoings that could be reduced?   Would downsizing your home be an option?   It's worth looking at all sorts of options, even the ones that seem far-fetched.  And as Sunshine has been saying, looking at other medically-related jobs is a good idea, perhaps you could visit one or two employment agencies for a general chat about what is available - we don't always know what's out there.
Title: Re: Overwhelmed
Post by: Carolina on April 12, 2018, 05:34:22 AM
I retired before the worst of my symptoms developed, although I did retire early due to severe coronary artery disease.

I take Low Dose Naltrexone for pain and it works very very well for me.  I have severe osteoarthritis, with joints that need replacement, but that is an issue due to other health problems, so I haven't had any surgery so far.

My theory about meds is that you can try a med to see if it helps, and you can stop if it doesn't help or if it causes a problem.  I don't take methotrexate, but my understanding is that methotrexate can take time to work.  And there are other drugs including biologicals that can be effective. 

I have developed some reactions to meds over my lifetime (I'm 76) and have had to stop taking them, of course.

But just as you would probably take an antibiotic if you had an infection, or deal with a dental cavity, or a broken bone, meds are there because they can help us in many cases.

Regards, Elaine
Title: Re: Overwhelmed
Post by: Linda196 on April 12, 2018, 09:30:34 AM
Regarding not working while on MTX, I completely understand; it has nothing to do with the demands of the job or the physical side effects of the drug. I was a critical care nurse as well, in a Medical unit that handled "unknowns" and communicable diseases. I was temporarily reassigned while I was just on steroid therapy (not that I could have worked at that time anyway due to illness) but once I was prescribed permanent steroid and MTX therapy, I was advised to take a long term medical leave, with the option of returning to a "clean" area or research when my health improved.

Considering that, due to increasing cognitive difficulty making it impossible for me to trust my skills, calculations and judgement at the time, it was time to let go anyway.

With time, I had come to the decision that I could return to my concurrent part time job, plasma exchange therapy, which would mean part time salary as well, but the same time factor had brought me to the age where I could retire without financial penalty, so I chose to officially retire.
Title: Re: Overwhelmed
Post by: SunshineDaydream on April 12, 2018, 07:51:09 PM
In a different message board I just saw a nurse is looking for career change and there are these two suggestions that involved using prior knowledge and experience in new setting:

"Look at healthcare supply chain, they like to hire nurses as buyers and product specialists or analysts since they have a better understanding of what's going on."

"Not even medical supply companies but your own healthcare company needs to source product. Buyer, sourcing manager or purchasing agent or such need RNs."
Title: Re: Overwhelmed
Post by: warmwaters on April 16, 2018, 02:06:47 PM
Late to the party, but... a couple of other thoughts.

If you are working, are you eligible for short or long term disability? If you could take a few weeks off (need your doctor to support you with this), you could a) just get some rest, b) take some time to lay out your options, including other forms of work, c) take some time to explain more to your friends and family who don't understand.

Some people around will never understand. They don't get that when you say "I'd love to come, but I'm wiped out today" what you mean is that it feels like you've had the flu for 3 days, or been run over by a truck. Some people will get it eventually.  And we have to learn new behaviors too. We have to say when we need help, learn to say no to things we now find hard to handle, and learn to accept help, even when things aren't done exactly how we would do them. I've had this health problem for 9 years, and I'm still practicing these new behaviors.

It's a shock when essentially a doctor says "I'm worried" by suggesting a more substantial treatment. I hope you've had a couple of days to deal with the shock.   Good thoughts heading your way.
Title: Re: Overwhelmed
Post by: irish on April 16, 2018, 05:25:26 PM
I will add that nurses have the ability to assess things----there are so many things to assess and nurses have been rained in this process of assessment, be it objective, subjective, etc. plus nurses are exposed to so many types of nationalities, educational levels, types of businesses, etc. 

Nurses sort of fall into many categories and each nursen needs ton probably get some assessment done prior to changing vocations. If you know what your strengths are you are ahead of the ball game but sometimes we can feel a little unsettled about what we should pursue in our next endeavor. Good luck. Irish