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Regular Member

Date Joined Feb 2011
Total Posts : 399
   Posted 11/12/2013 9:08 PM (GMT -6)   
Hey Everyone,
       Lupus has been in my life since 1997.  By this point in the journey I have gotten used to (mostly) the ups and downs, but this one caught me off guard.  Two days ago I started experiencing a little more arthralgia than usual.  I dismissed it and attributed it to the weather, which has changed and the bit of rain we had.  Yesterday I woke up and could barely stand the pain when my feet hit the floor.  I ached all over.  My body felt hot.  And my brain was fuzzy.  I stayed home and did very little, which was good, pampering myself and taking good rest.  By evening, I felt a bit better and went out to help celebrate a student's 18th birthday.  Got home at a very reasonable hour, relaxed with my husband, reading and watching some television, all the while sensing that sensation that precipitates a flare circling the edges of my body.  I woke up this morning completely miserable.  Thankfully, today was a Prednisone day, which helped.  But I ignored my body's request to take a sick day and went to work instead.  To make a long story short, adrenaline ruled my day as I worked with high energy 7th through 12 graders.  When I finally got in the car to drive home, I collapsed and felt the overwhelming fatigue grab me by the throat.  I got home a compete basket case.  My brain wouldn't even work! 
       I am feeling discouraged and depressed.  I had wanted to go out this evening to listen to a talk that interested me.  But like always, it's hard for me to plan because this unpredictable disease comes at me at times when I least expect it.  That's what frustrates me.  I want to have my normal life back.  I don't want to have my choices determined by something I have no control over.  I just want to feel good and healthy and strong.  Is that too much to ask for?
      Thanks for listening.  I just had to get this off my chest. 

Regular Member

Date Joined May 2007
Total Posts : 482
   Posted 11/12/2013 9:44 PM (GMT -6)   
I am so sorry. The complete unpredictability of this disease is so frustrating. And it always seems to rear it's ugly head whenever we dare to make plans. I hope you are starting to feel better.
Take care, Fran

Dx: Lupus, sjogren's, celiac, severe allergies, asthma, GERD
Daily Meds: Plaquenil, Zyrtec. Aciphex, Nasacort, Prozac, Ambien CR, CellCept, Zantac, Bactrim, Q-Var, Restasis, Albuterol
Daily Supplements: Calcium, B-100 Complex, Daily Vitamins.
As Needed Meds: Epinephrine, Benadryl, Proventil, Tylenal, Vicodin, Prednisone.

Veteran Member

Date Joined May 2005
Total Posts : 7725
   Posted 11/12/2013 11:58 PM (GMT -6)   
Agreed, it sneaks up on you at the oddest times -- and too often it's when we have something planned. At least we're not in this alone - y'all understand!
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde

Elite Member

Date Joined Jul 2009
Total Posts : 14475
   Posted 11/13/2013 12:20 AM (GMT -6)   
So sorry! You can't make plans with this stuff.
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! :))

Melissa D.
Regular Member

Date Joined Aug 2008
Total Posts : 451
   Posted 11/13/2013 12:37 AM (GMT -6)   
Hi Laura,

Sounds like you and I have a lot in common as I too was diagnosed in 1997 and get so depressed because I want nothing more than to have a sense of normalcy back. I think the unknown of what tomorrow might bring and that bringing hesitation to make plans because we don't want to disappoint friends, family and ourselves is honestly the hardest part.

I know it's not much comfort, but please know you are not alone in this crazy roller coaster that is life with lupus. Hang in there, hope you're feeling better soon.

Mother of 2 beautiful adult children and one amazing daughter in law, lupus SLE since 1997, sjorgrens, raynauds. My worst nightmare was imagined when my son was diagnosed with RA and lupus SLE while in college. I take a slew of meds to many to mention, am on Benlysta infusions. I try to live each day with a positive outlook and count my blessings.

Barbara Lee
Veteran Member

Date Joined Sep 2003
Total Posts : 2889
   Posted 11/13/2013 6:42 PM (GMT -6)   

Gentle ((((((hugs)))))) I'm sorry my friend that you're in a nasty flare right now. I totally understand your frustration with this darn disease. It makes our lives so difficult all the time it seems.

I know that I never make plans in advance, and IF I even consider saying yes, I tell whomever I'm meeting or whatever, it will all depend on how I'm feeling that morning. It's a terrible way to live and it's very depressing. I so get what you're saying.

How do we get around this and move on ahead? I'm not sure, I've just adapted my lifestyle to I never say Yes to anything, until the day of or maybe the day before. I'm sorry that I've not been in touch by email or phone, but since starting radiation 7 days ago, I'm so totally wiped out, I don't even want to talk to my kid on the phone.

I have two treatments left and maybe if I'm up to it and you're up to it, we can talk on Sunday morning. I'll send you an email this Friday after radiation. Laura, you're not alone in the battle, we all understand the frustration, depression, pain, and just plain old being mad with disease. Whenever, you need to vent you come and do so. We're all here for you no matter what.

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.

Regular Member

Date Joined Feb 2011
Total Posts : 399
   Posted 11/13/2013 9:11 PM (GMT -6)   
You all are the absolute best!!   Thank you for all of your love and support.  I felt better today and took it easy.  Still not moving well and pretty darned fatigued, but at least I don't feel brain dead.  I realized this morning when I went to take my morning meds that I took them by mistake last night (that's a first).  Thankfully, it was just an added dose of Plaquenil along with my regular other meds that I take twice daily.  That tells me how my brain function was.  Today was so much better.  What bothers me the most in this journey is that I hate to disappoint others.  I get excited about something coming up and try to make plans and end up cancelling more times than I would like to admit.  My good friends understand, but it still feels uncomfortable at times.  It does encourage me to live in the moment and to be thankful for where I am right now.
Yes, Barbara.  Do e-mail.  I would love to talk to you on Sunday.
Love You All!!
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