I'd like off of the roller coaster now please.

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acquiesce
Regular Member


Date Joined Jan 2014
Total Posts : 360
   Posted 1/22/2014 7:21 PM (GMT -6)   
I'm having an emotional day. I'm newly diagnosed with lupus and not on anything yet except celebrex. I've been exhausted and in pain since august not to mention dealing with facing this disease for the rest of my life. It's taking so long and will likely take longer to finally get to where I'm on the right meds and having at least a few good days.

I'm still working which isn't helping but we have kids, a mortgage, yadda yadda. I got lost on my way home from work last week. I've been trying to atleast cut my hours back some (I'm at 5 days a week) but we are short staffed and valentines day is approaching. (I'm a florist)

Plus and sorry for too much info but my monthly is about to come and it always knocks me on my butt, like 100 x the regular flare symptoms so that I'm tossing and turning in tears. And hormonal and sensitive.

And I'm looking this very moment at my Christmas tree, which is still up and do you think I can get off the couch and put it away? Yeahhhh right.

Please remind me that this too shall pass! That a clean house doesn't matter! That I will eventually manage my pain and symptoms. That my husband means it when he says in sickness and health and my children will forgive me for not being the mom anymore who baked muffins all the time.

I wouldn't wish this on my worst enemy. I hope you all are having a better day. Thanks for reading my rant.

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 1/22/2014 8:10 PM (GMT -6)   
((((((((Gentle hugs))))))))
Believe me you will feel better after the medicines get regulated and the stress lightens up.
Why hasn't your doctor started you on plaquenil yet? This is usually first med for us. It takes awhile to kick in (6 months), but once it does you'll feel better.

Who says the house has to be spic and span? This is a great time for the kids to pitch in. I was helping my mom clean at age 6. I was given a damp rag and dusted everything. I wasn't a perfect sweeper but I got the big stuff up. I knew how to put my toys away and put my clothes away. I even helped wash dishes.
Enjoy the Christmas tree a little longer. Who says it has to be pulled down so quickly after Christmas?

Hang in there and try to rest some.
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! :))

TXplowgirl
Regular Member


Date Joined May 2010
Total Posts : 66
   Posted 1/22/2014 9:17 PM (GMT -6)   
Hi and welcome,

Sorry to hear you're feeling crappy.

Rest when you can because you will be tired almost all the time. It has been a year and a month for me since I was diagnosed. I have good days and bad days. There will be times your body will need to sleep and don't be surprised if you need to sleep anywhere from 10 to 16 hours or more.

I have gotten to where I need 12 at least before I feel halfway decent but then again you have children and a job, I don't. So get your rest when you can.

Epsom salts in a hot bath helps with pain as well as a heating pad or electric blanket.

Hang in there and gentle hugs.
Systemic Lupus, Connective Tissue Disease, Fibromyalgia, Chronic Fatigue Syndrome, Raynauds, Anxiety and Depression.

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7723
   Posted 1/22/2014 10:16 PM (GMT -6)   
As time goes on, the roller coaster becomes more gentle! With the right treatment, most of us get to a more steady, more predictable state of health. Sometimes this takes a lot more trial and error than we would like, Lupus is a sneaky darn disease, but hang in there.

You will begin to understand how much your body can do, and adjust your tasks accordingly. On days when you feel better, do about 1/2 to 2/3 of what you think you can, then notice how you are the next day. Staying aware of how everything affects you is a major key in managing Lupus.

If you are still consistently needing 12 hrs of sleep, txplowgirl, I wonder if you are getting deep, restorative sleep? Sometimes one of our meds will jack us up so we don't sleep very well, or often Lupus itself causes insomnia. Check in with your rheumy, maybe a sleep study is in order, or perhaps you need some (otc or prescription) assistance to get better rest?

Cheers,
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously." - Oscar Wilde

acquiesce
Regular Member


Date Joined Jan 2014
Total Posts : 360
   Posted 1/23/2014 6:40 AM (GMT -6)   
Thank you for your replies, I'm getting 12 hours a night but I wake up through the night and feel like my body is on fire or I'll go to turn over in my sleep and the pain wakes me up. I'll ask about some sleep medicine. I go back to my rheumy on Feb 6th at the lupus clinic.

She didn't put me on anything besides celebrex because she wanted to do more specific blood work first. My ana was a low positive but I have 8 out of eleven of the markers.

I'm resting on my days off but it doesn't feel like I have. Getting up in the morning and working is something I'm starting to dread. The stress of that probably isn't helping. I'm probably stressing myself out too much.

I'm usually quite strong emotionally and good at keeping positive. Maybe I've hit the wall and am just overwhelmed and exhausted. I'll try counting down til my appointment. I rely on my heating pad, take nice relaxing baths and rest every chance I get but I think working so much on my feet all day and lugging buckets of water etc is really kicking my butt. By the time I get home I'm stuck on the couch with my heating pads and a complete write off. Hobbling to the bathroom is comical!

Thanks for your kind words and suggestions, it is much appreciated.

Butterflake
Veteran Member


Date Joined Jun 2006
Total Posts : 1650
   Posted 1/23/2014 8:22 PM (GMT -6)   
Yes Dear, of course you're overwhelmed, exhausted, stressed, and probably depressed too. How can you not be when you're first diagnosed. Anyway, I worked for four years after my diagnosis before quitting and going on disability. A few tips:
Mornings, as you know, are a bear so do as much as you can for your kids and hubby after work and take your bath with Epsom salts before bed. Have some coffee already set up to brew in the AM.

I had an alarm clock and blankets in my car and would rest/sleep during lunch. Later I brought a camping mat and flannel sheet into work and slept under my desk at lunch. The longer you have lupus the more you don't give a care what other folks think. Rest is essential.

My housekeeping skills used to be meticulous, but my house isn't even close to that anymore and I don't care.

The Christmas tree tradition was that the tree was set up on Christmas Eve in anticipation of Christ's birth and remained up until the end of January. If that doesn't help you, one year I kept the boxes out and put away a few ornaments, etc. when I could.

Everyone here is rooting for you Sweetie. Take a deep breath. It does get better. Love, Butterflake
SLE '05, Sjogrens, fibro, Raynaud's, major depressive disorder, CNS problems, diastolic heart dysfunction, GERD, 1st stage kidney disease. Many meds: better living through chemistry

Donna
Sjogren's Moderator

oreo11
Regular Member


Date Joined Feb 2011
Total Posts : 399
   Posted 1/23/2014 10:29 PM (GMT -6)   
Instead of a Christmas tree this year I just put hand-made purple and white snowflakes on the window. Lifted my spirits more than anything in the world. And I haven't dusted the house in months. Thank goodness my husband keeps the house vacuumed. You can only do as much as your physical and emotional being has strength to do so. The beginning of this journey is the most difficult. You have to take care of yourself and give yourself permission to experience all of the emotions that you are having. Support and hugs are always here for you.

Laura

acquiesce
Regular Member


Date Joined Jan 2014
Total Posts : 360
   Posted 1/24/2014 6:44 AM (GMT -6)   
Thanks so much, it's a comfort to know there is some light at the end of the tunnel and that this state of mind and body is somewhat temporary. I wish there was some way to speed up the process of getting on the right meds and adjusting/ accepting all this, for everyone.

You are all so thoughtful to take precious time out of your day to reassure and support me and it means a lot. So far in this journey I have noticed that the majority of women I've encountered who are dealing with lupus are the strongest, most amazing women.

hugs,
Joie

Quiet1
New Member


Date Joined Jan 2014
Total Posts : 4
   Posted 1/27/2014 11:35 PM (GMT -6)   
Joie, hang in there. Everything you are experiencing is completely normal after being diagnosed with a chronic illness. Sometimes you don't realize how much getting news like this affects you mentally. I was always very strong mentally but it crushed me when I was diagnosed. The anxiety of thinking of the rest of my life and how the Lupus and Sjogrens might affect me and my family was overwhelming and caused me to flair even more. You really should talk to your doctor about some meds for the anxiety or try yoga or meditation. I feel strongly that controlling your anxiety and stress is the biggest battle in keeping flairs at bay. It does help having someone to talk to about it that is or has been in the same situation. While waiting on getting the right meds for you, work on your mental state and try to be positive. It does get better and you learn to go on qnd not let it control your life. I was diagnosed in 2006 and I still have times that I get down, we all do but you pick yourself up and tell yourself every time you start to get anxious that it could be worse and look to the positive things in your life.
I will keep you in my thoughts and prayers, hoping that you can find some sort of inner peace!

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 1/28/2014 2:50 PM (GMT -6)   
I've always thought I was tough one and when I was diagnosed I freaked out.
I'm much better now and have learned to handle my fears through therapy and mild anti-anxiety medicine.
It really helps me to discuss my fears and come here for additional support.
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! :))

acquiesce
Regular Member


Date Joined Jan 2014
Total Posts : 360
   Posted 1/29/2014 8:02 AM (GMT -6)   
Thanks Quiet1 and Couchtater :) It's amazing now how I can literally feel certain stressors making me flare more. I'm really trying to quiet my mind when it starts now and breathe deep. I agree that staying positive has to be our biggest challenge and the most important one. Stress is so not good for lupus!

I was in therapy before as I was emotionally abused as a child and in my first marriage so I've gained a lot of insight from that. I am feeling though that I could benefit from talking to a therapist who deals with chronic illness. Coming here also helps a lot :)

I'm taking control as much as I can through my diet, I want to be the healthiest me I can. I have 4 amazing kids and a fantastic husband that I want to be around for! I also realllllly want to be a grandma some day!

I tell myself that if I can get through being in a shelter with my children in 2007 and starting over completely with nothing then I can get through this. We all can!

My Christmas tree is still up lol. We had friends over on Saturday and I mentioned it and they hadn't even noticed until I said it. I guess it really isn't that important ;)
Lupus, livedo reticularis, Raynauds, cold urticaria, endometriosis, bursitis, arthritis, Sjorgens, anemia, leukocytosis, vasculitis, pleurisy, asthma and all that fun stuff!

Be who you are and say what you feel because those who mind don't matter and those who matter don't mind - Dr. Seuss

Ellie33
New Member


Date Joined Dec 2013
Total Posts : 12
   Posted 1/31/2014 1:39 AM (GMT -6)   
If it makes you feel any better I'd just like to chime in my two cents... I may have my Christmas tree down, but I've still got a few boxes of Christmas decorations around the apartment and stuff that I've not put away. I'm sorry for you recent diagnosis. I, too, remember it took me quite awhile to mentally adjust to being diagnosed. I struggled with depression around it, and it's taken me many years to adjust (still working on it) to taking things easier and just accepting my new limitations. I am not who I once was and am constantly working on embracing and loving who I am now.

PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2608
   Posted 1/31/2014 11:06 AM (GMT -6)   
Depression set in with me as well even though I was basically retired and my kids were grown so I have empathy for your situation.

What was important for me was that my family understood lupus, and especially that there were times (in the first few years, ALL the time) when I had to rest. Try to remember that your health is more important than your Christmas tree, the dust on your baseboards, or anything else in your life. A year ago I talked my husband into selling our dream home in my dream neighborhood and downsizing in order to make life more simple and better for my health. When I'm tired, I rest.

It has been 8 or 9 years since my diagnosis and I'm in remission. My labs are perfect. Fibro still knocks me down, but getting back up is easier because I now know that my flares are not permanent.

Take good care of yourself both physically and emotionally. Being in a support group such as this is a big step in the right direction. It sure helped me through some dark days.
SLE, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.

plaquenil, neurontin 1200mg, synthroid, spironolactone, actonel, niaspan, simcor, lunesta, cymbalta 90mg, norco 10, vitamin D, Calcium, Multi Vit. Fish Oil, low strength aspirin

acquiesce
Regular Member


Date Joined Jan 2014
Total Posts : 360
   Posted 2/1/2014 7:05 AM (GMT -6)   
Thanks Elli and Patty. I had a fall on the ice on Thursday and think I pulled some muscles by my ribs and in my legs so now I'm hobbling even more and still trying to work. The pain has been really keeping me up the last two nights and I can feel myself getting more and more depressed though I'm fighting it. It really is a roller coaster ride! And I don't say much to my family or my boss because they would have to get tired of me moaning I'm sure. Even the little bit that I do, I feel as though they must be so tired of listening to me. No one likes a party pooper.

It is a comfort to know that remission is a possibility and I'm so glad you are doing better Patty. Ellie, it helps to know that I'm not the only one although I really wish I was! I wouldn't wish this on anyone. I may just have to admit defeat when I see my rheumy next Thursday and discuss depression. :(
Lupus, livedo reticularis, Raynauds, cold urticaria, endometriosis, bursitis, arthritis, Sjorgens, anemia, leukocytosis, vasculitis, pleurisy, asthma and all that fun stuff!

Be who you are and say what you feel because those who mind don't matter and those who matter don't mind - Dr. Seuss
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