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Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7720
   Posted 12/13/2015 2:56 PM (GMT -6)   
We don't really maintain an "everyday check in" thread on Lupus like our friends over in Depression or Chronic Pain forums do, but maybe we should start! Anyone want to check in?

For me, mostly my Lupus is quiet and I spend my time focused on eating healthy (I'm not very successful) and visiting the gym 3x weekly. I'm really stiff and sore if I don't visit the gym, it's not as much a mark of health as it is a desperate attempt to keep from stiffening up in pain.

December is a bad month for me. Even living in the south, and having great sunny days and warm weather this year, it gets me down. My spirits drop into the toilet, I forget about all my reasons for carrying on. I suppose this all started when my mother, who loved the season, died many years ago, taking my family Christmas cheer with her. But today I have friends to celebrate with, nothing bad going on, much to be thankful for... but I struggle to keep my spirits from falling. It's not "bad thoughts", it's physical, it sucks!

The mid-December weeks while the days get shorter and shorter are the worst! I can't hardly wait till the Solstice on December 22 when the days finally start getting longer!

How is everyone else doing?
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

joe'sprincess
Regular Member


Date Joined Aug 2015
Total Posts : 33
   Posted 12/13/2015 7:48 PM (GMT -6)   
Hugs to you Lynnwood. I hope things will get easier for you and you are able to concentrate on the positive and let your friends build you up and keep your spirits high!

I am relatively new here. Not much of a diagnosis yet, (inflammatory arthritis) my symptoms aren't debilitating, thank goodness, and I hope it stays that way. My knee is really not getting better but also luckily not worse. Plaquenil takes awhile to build up so I will be patient.

The past 2 years I have lost family members right before Thanksgiving. 2013 was my 43 year old sister who passed after a lifetime battle with diabetes. 2014 my father. This year my 50 year old brother, who is also diabetic from the age of 12, has had a life changing stroke in April and has been in and out of the hospital. These past 3 weeks have been very scary. I have had to become power of attorney for him. So, the busy holiday season has added stress. I have a 12 year old son whom I'm trying to keep things Merry and Bright for. I work for a large financial company in the payroll department. The end of the year is the most stressful time, in an already stressful job.

Thank goodness I have a sister who takes on some of the responsibilities (remotely) of managing my brother's situation. She lives 1 1/2 hours away from where me and my brother live and she drives up as often as possible and makes many phone calls to ensure his care. If not for her I am sure I would have had a nervous breakdown by now!

I am grateful for this forum and come here often to learn and for support. So, thank you everyone!! I feel like I just got a lot off my chest and that is helpful in itself! :)

Lisabeans
Regular Member


Date Joined Jun 2015
Total Posts : 144
   Posted 12/15/2015 1:29 PM (GMT -6)   
Hello all. I don't post often but I do read daily. I don't have an actual lupus diagnosis but positive ana and other symptoms, my rheumy is treating me for it. I have been on plaquinal since June. Still have burning pains pretty much daily.

So sorry for the sadness and loss among you. This is supposed to be a happy time of year. I, like you all, are trying to keep spirits up. With 4 kids, working full time (as a Realtor) and helping out my husband who is being treated with overall nerve damage and gastroparesis (stemming from a head on collision 7 years ago), it is hard. Thankfully my children are a great help and understand.

I am going to my rheumy Friday to discuss how the medicine is working. I guess it is since now my son can sit on my lap without extreme pain. I do have daily burning pain and exhaustion. I also have ulcerated colitis so we are very cautious with meds.

This is such a life changing disease. I am so glad that we have this forum. Thanks everyone for being there and listening.
Lisa
Ulcerative Colitis (remission) on lilada
Reflux on dexilant
Recently low positive ana and now on plaquinal

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7720
   Posted 12/15/2015 1:41 PM (GMT -6)   
Lisa,

You may need some prednisone for a while to help get the burning pains under control. Are they in the muscles or the joints? I get burning in the small joints in my toes, drives me nuts!
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

Lisabeans
Regular Member


Date Joined Jun 2015
Total Posts : 144
   Posted 12/15/2015 1:43 PM (GMT -6)   
Lynnwood,

I get the burning pains mostly in my shoulders and knees. Occasionally in my fingers when it is really bad and my neck when I get stressed.
Lisa
Ulcerative Colitis (remission) on lilada
Reflux on dexilant
Recently low positive ana and now on plaquinal

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 12/15/2015 4:31 PM (GMT -6)   
I'm doing okay with my lupus as long as I avoid strong UV light. I'm a bit achy today due to having to get up at 7am and driving 40 minutes to pick up my niece and father, only to find out my niece wasn't ready to leave work yet. I had to return my father to our house and ride back to pick up my niece. (He had to get my brother to his dialysis appointment.) I had to sit in the car waiting 40 minutes for my niece who was waiting for me inside. (She didn't answer her phone)It had to be a cloudless day.😣
My PsA is causing my left hand to swell every morning. I'm a lefty. 😟 it takes most of the day for the swelling to go down.

I've been very stressed for over a month now. I've been having my father rebuild the engine on an old Chrysler to pass on to my oldest brother. I've been dollared to death on it, but it's for the best since he lost his only transportation two months ago. He had to have emergency surgery just before thanksgiving due to a section of his small intestines suddenly dying. He's been recovering at our house for several weeks now. Few more weeks and he's heading back to his home. I'm tired of company. 😨

Otherwise, I'm surviving.
Joy
Lupus, RA, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Depression, Allergies, diabetes, and benign familia tremors

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

joe'sprincess
Regular Member


Date Joined Aug 2015
Total Posts : 33
   Posted 12/15/2015 5:11 PM (GMT -6)   
I get those burning pains in my joints of my little toes on my left foot. I always wonder if I'm just imagining it, weird!!!

TXplowgirl
Regular Member


Date Joined May 2010
Total Posts : 66
   Posted 12/17/2015 10:52 AM (GMT -6)   
I'm still here, been over in the thyroid threads for a while but I keep reading just not commenting. I was diagnosed with Hashimoto's Thyroiditis the day before Thanksgiving. My immune system is now attacking my thyroid. Back 4 months ago I had emergency surgery for a cancerous ovarian tumor. It was an 11 lb tumor on my right ovary. It got that big because I thought it was my Lupus or Fibro giving me fits with alternating diarreah and constipation and I started bloating on top of that and I just chalked it up to 1 or the other and kept trying to ride through it. Finally couldn't take it any longer and went to the dr.

I just wanted some Tylenol 3, they couldn't believe I wasn't in that much pain and just wanted something to ease it. I was more bloated than I thought because they set me up for an immediate ultrasound, then with those results had me do a ct scan all in the same day. Problem was it was on a late Friday evening and dr gave me some pain meds to take until Mon when they could get me in to start workups.

Sunday came around and started having more pain than I could handle and finally got to where I couldn't take the pain anymore so went to the ER and by the end of the day they were sending me by ambulance to OU medical center in OKC, 75 miles away. I had a total hysterectomy, plus an appendectomy as well as removal of the tumor which had ruptured, reason for all that pain Sunday. Found out at that time that i'm alergic to Morphine. Oh boy that was not fun.

They took a bunch of biopsies and I came out lucky on that. The tumor was officially called A Mucinous Carcinoma of the right Ovary, stage 1 C, all biopsies were negative, did not need chemo or radiation. Thank Goodness. Checkups have all been fine on that end.

Still feeling like crap though because i've been in a flare ever since. No energy whatsoever, no pain really just feeling weak. 2 days ago I took a 10 minute lukewarm shower and I barely made it out of it without falling, as it was my legs gave out on me and I sat down in the floor. Had to yell for my husband to help me up and he dried me off and helped me get to my recliner where I sat for the rest of the day.

I'm not going to get into any more problems i'm having but these are the most major. I'm just sick and tired of being sick and tired and just tired of feeling weak as a baby kitten.
Systemic Lupus, Lupus Nephritis, Connective Tissue Disease, Fibro, RA, Chronic Fatigue Syndrome, Raynauds, Social Anxiety Disorder, Depression, High Blood Pressure, High Functioning Asperger Syndrome, Hashimoto's and Mucinous Carcinoma of The Right Ovary, Stage 1C

Post Edited (TXplowgirl) : 12/17/2015 10:04:09 AM (GMT-7)


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7720
   Posted 12/17/2015 12:18 PM (GMT -6)   
TXplowgirl

Yikes! So sorry you've been having such a hard time. I too have been known to put things aside thinking they were Lupus or Fibro related, so I know how easy that is to do.

Give yourself a break!! Coming back from a surgery where they basically moved everything in your abdomen around takes time -- and it takes double or triple time when we have Lupus!

And a thyroid diagnosis on top of it all, oh my.

Hang in there -- do what your Drs tell you and try to eat as much healthy protein as you can. Protein really helps both healing and energy, right now sugars and carbs won't help you much at all. Although if you're like me those are the comfort foods you want.

Sending healing thoughts your way.
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

theHTreturns...
Elite Member


Date Joined Mar 2009
Total Posts : 20186
   Posted 12/17/2015 11:34 PM (GMT -6)   
looking like cushings syndrome for me. I pop in every now and then. keep strong everybody. many healing thoughts to those doing it tough.
THE HAPPY TURTLE.

A QUOTE FROM THE HAPPY TURTLE THAT REFLECTS ME.

"COMPLEXITY IS MY WAY OF EXPRESSING MY NEEDS IN A MANNER THAT IS NEITHER DESTRUCTIVE, NOR NEGATIVE"
'

acquiesce
Regular Member


Date Joined Jan 2014
Total Posts : 360
   Posted 12/18/2015 6:47 AM (GMT -6)   
Happy Holidays and gentle hugs to all :)

I'm in the midst of a flare and doing a short course of prednisone to hopefully get myself to my "normal" again. I tried to find the train that ran me over to no avail lol. I find this time of year so stressful and with the wet weather we have had in Southern Ontario, Canada I'm sure it isn't helping. I keep vowing to start Christmas prep in June and keep procrastinating which leaves me in "oh crap" mode for the first weeks of December lol. This too shall pass. Serenity nowwwww! hahaha yeah right

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7720
   Posted 12/18/2015 7:11 AM (GMT -6)   
Re: Christmas Prep in June.

I saw a great tongue-in-cheek article a couple of days ago that took all the things we cram into this time of year and spread them out over ALL the months of the year. If I run across it again I'll post a link.
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

Butterflake
Forum Moderator


Date Joined Jun 2006
Total Posts : 1650
   Posted 12/18/2015 11:09 PM (GMT -6)   
Hi Everyone. As proof that Lupus Fog has a firm grasp of my brain, I wrote a long update and forgot to send it. Probably the most important thing I said was Txplow I'm very sorry to hear of your pain and stress. Buy a shower chair, sit on edge of tub, slide butt onto chair and lift legs one at a time into tub. Shower while sitting. Hand rails are easy to attach to side of tub. Always have rug on floor. Thank God for home therapists. Love to all! Butterflake
SLE '05, Sjogrens, fibro, Raynaud's, major depressive disorder, CNS problems, GERD, angina, 1st stage kidney disease. Many meds: better living through chemistry

Felisaty
New Member


Date Joined Jan 2016
Total Posts : 2
   Posted 1/5/2016 7:39 AM (GMT -6)   
I hope the holidays were wonderful for you all. Thank you for sharing - as reading what you've written here is so helpful for me. about the time you all were posting on this thread, I was seeing my PC about my symptoms for the first time. I'm brand new to this forum as of today, and I don't have any official diagnosis yet. I am seeing a Rhuemy tomorrow with having a positive ana result the week before Christmas. My PC also suspects Sjrogren's due to excessive dry mouth and dry eyes. I'm also having hair loss and some muscle fatigue. Of note ...I had gastric bypass in Oct 2014 so my labs are all checked regularly with no deficiencies.

I was diagnosed with Chronic Fatigue back in May of this year, having tested positive for Epstien Barr Virus. Now though I am wondering if there wasn't more going on then. I had bouts of fatigue so extreme that it inhibited my daily functioning, I would randomly fall asleep while trying to focus on my design work. Aching all over, muscle tenderness and pain, occasional dizzy spells. During the summer I took a chance and tried some all natural supplements I had been hearing about through a friend. Desperate to find something to help me have more energy and to reduce the inflammation in my body. To my surprise and utter delight, the products have been game changing and a huge life saver for me. I have mostly good days now and my inflammation is at an all time low, as is my anxiety (came off my klonopin!)

The dry mouth / burning mouth sensation and hair thinning/loss still persist though, and I finally realized I needed to keep working to figure those out. I never imagined it might be an autoimmune disease. I'm hopeful for my first visit with the Rheumy tomorrow... but really have no idea what to expect.
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