Author Topic: Overwhelmed  (Read 1180 times)

Kristina09

  • Guest
Overwhelmed
« 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?

cccourt1942

  • Hero Member
  • *****
  • Posts: 1532
  • Suffered from numerous symptoms for about 25 years
Re: Overwhelmed
« Reply #1 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
Sjogren's, Psoriasis, Hashimoto's, Osteoporosis, Osteoarthritis, Cold hands/feet,  fatigue,  pilocarpine-25 mg , Restasis, Plaquenil, Low dose Prednisone (2-3 mg daily) Xylimelt, Citrucel, Alcon-Naturale, Tears,Omega 3, Vit.D, Caltrate+D3, Fosamax, CoQ10, Zinc, Oxtellar. Levothyroxene

araminta

  • Sr. Member
  • ****
  • Posts: 315
Re: Overwhelmed
« Reply #2 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.
Dry eyes (MGD), nose, mouth, labyrinthitis, rashes, dry skin (occasional eczeme), mouth ulcers, constant but fluctuating fatigue.  Blood tests and Schirmers negative,no Sjogrens dx yet.   Flax oil, multivitamins,  saline nasal spray, Hylo forte, Lacrilube, organic castor oil for eyes, moisturisers.

Kristina09

  • Guest
Re: Overwhelmed
« Reply #3 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.

Kristina09

  • Guest
Re: Overwhelmed
« Reply #4 on: April 11, 2018, 06:47:33 AM »
Does anyone here not work or work decreases hours?  If so how did you decide?

Joe S.

  • Hero Member
  • *****
  • Posts: 7586
  • Fibro, Sjs, RA, CNS, Diabetes, TIA's, ADHD, ptsd
    • Chakra Force
Re: Overwhelmed
« Reply #5 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.
bkn C4 & C5, herniation's 7 n, 5 t, 4 l, Nerve Damage
Lisinopril, Amlodipine, Pantoprazole, Metformin, Furosemide, Glimepiride,
Centrum Silver, Cinnamon, Magnesium, Flaxseed, Inositol, D3, ALA, ALC, Aleve, cistanche
Reiki, reflexology, meditation, electro-herbalism

lorigacc

  • Jr. Member
  • **
  • Posts: 99
Re: Overwhelmed
« Reply #6 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.
Secondary Sjogrens, Rheumatoid Arthritis, Antiphospholipid Syndrome, Osteoporosis, Vertebral Compression Fractures, Kyphosis, Hiatal hernia
   Plaquenil, Forteo injections, Restasis, Prinivil, Ecotrin, Calcium, Vitamin D, Probiotic, Fish Oil

cccourt1942

  • Hero Member
  • *****
  • Posts: 1532
  • Suffered from numerous symptoms for about 25 years
Re: Overwhelmed
« Reply #7 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
Sjogren's, Psoriasis, Hashimoto's, Osteoporosis, Osteoarthritis, Cold hands/feet,  fatigue,  pilocarpine-25 mg , Restasis, Plaquenil, Low dose Prednisone (2-3 mg daily) Xylimelt, Citrucel, Alcon-Naturale, Tears,Omega 3, Vit.D, Caltrate+D3, Fosamax, CoQ10, Zinc, Oxtellar. Levothyroxene

araminta

  • Sr. Member
  • ****
  • Posts: 315
Re: Overwhelmed
« Reply #8 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.







Dry eyes (MGD), nose, mouth, labyrinthitis, rashes, dry skin (occasional eczeme), mouth ulcers, constant but fluctuating fatigue.  Blood tests and Schirmers negative,no Sjogrens dx yet.   Flax oil, multivitamins,  saline nasal spray, Hylo forte, Lacrilube, organic castor oil for eyes, moisturisers.

Kristina09

  • Guest
Re: Overwhelmed
« Reply #9 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

Kristina09

  • Guest
Re: Overwhelmed
« Reply #10 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.

SunshineDaydream

  • Hero Member
  • *****
  • Posts: 696
Re: Overwhelmed
« Reply #11 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?
Sjogren's, lupus, OAB and osteopenia
Rx: Evoxac and Myrbetriq
Vitamins and Supplements: A, B complex, C, D3, E, calcium orotate, magnesium glycinate, D-Mannose, curcumin, fish oil, probiotic

Kristina09

  • Guest
Re: Overwhelmed
« Reply #12 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.

SunshineDaydream

  • Hero Member
  • *****
  • Posts: 696
Re: Overwhelmed
« Reply #13 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?

Sjogren's, lupus, OAB and osteopenia
Rx: Evoxac and Myrbetriq
Vitamins and Supplements: A, B complex, C, D3, E, calcium orotate, magnesium glycinate, D-Mannose, curcumin, fish oil, probiotic

Kristina09

  • Guest
Re: Overwhelmed
« Reply #14 on: April 11, 2018, 06:53:19 PM »
Good idea.  I?ll look into it.  Thank you.