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Veteran Member

Date Joined May 2005
Total Posts : 7720
   Posted 5/8/2009 11:53 AM (GMT -6)   
I want to start a thread with a nasty name and continue by spewing nastiness all through the post. But I am trying to be nice to everyone, so I won't do all that.

I don't know if I'm ever going to get used to the limitations from this #^&%!!! disease. I do okay with it for 3-4 weeks, then I get fed up with frustration and failure and go on a rage rampage. (Good thing I live alone so no one gets poked in the eye with a sharp instrument.)

The whole cycle is wearing me out and doesn't give me any hope that anything will ever change. I think the worst part is that physically my lupus is "calm" as my dr says. That means well-controlled with no inflammation or +ANA showing up. Still have the fatigue and cognitive issues when I get tired, stressed, or miss a meal. I have trouble posting here for help when it all seems like mental stuff that I should be able to adjust to and handle.

Basically, I hate this and am in a horrid mood. I saw a bit of Micheal J. Fox's show on Optimism last evening. A phrase that stuck in my head was something about hope needs a community. Meaning hope isn't something an individual can generate on their own. After 9 years you'd think I'd be getting used to this!!!!

So, I can only say "Argggg........."

Veteran Member

Date Joined Jun 2008
Total Posts : 675
   Posted 5/8/2009 12:38 PM (GMT -6)   

Lynwood - sorry you're feeling frustrated and "stuck".  I saw Michael J. Fox on someone's show recently, and the host was lauding him for his positive attitude - and he made it very clear that first there was lots of anger, depression and "wallowing" - using alcohol, etc. to blot it out.  I so respected that - it takes time and work no matter who you are.  And still there are bad days.  The thing he said that resonated with me was that he realized that even when his body was having a really bad day - which was disappointing - he didn't have to let his mind go along.  He could choose to acknowledge his body's bad day, but not adhere his emotional wellbeing to it.  I'm butchering it in translation, but he said he had to work at it until it finally became a practice of sorts.  I've tried it - and I'm no good at it - yet.....but it still sounds like something worthy of practice. 

As for the thought on community....I have become very isolated by these new limitations.  I think it's the hardest thing - not being a "do-er" anymore.  I'm an artist and creative energy has always been a dependable distraction, solace, refuge, whatever....but even that has failed during times of extended flare, which just makes me feel empty as well as lonely.  I think our psyches resist "getting used to it"....for good reason.  This forum has been a Godsend, because "normal" people just don't get it....lucky them. 

So .... I join you in a collective/community arggg...Arrgh....ARGHH!!! 

 Wishing you better days,


diagnoses:  mono 1972; postviral CFS 1997; fibro 1998;  UCTD (dx limbo) 2007
meds: Plaquenil 400 mg, occasional low dose xanax for sleep aid, artificial tears w/ ointment at night, Advil/aspirin prn

Regular Member

Date Joined Mar 2009
Total Posts : 98
   Posted 5/8/2009 1:26 PM (GMT -6)   
Hi Lynnwood, I don't know if I have any words that can calm the sting of this crappy disease, as I am a mess right now myself smilewinkgrin . But I can tell you, I get terrible mental stuff with this disease. I'll be honest and just lay it out there and then take a chance that you will continue to allow me on this forum and not throw me into a mental health forum tongue . Which is ironic, because I am a mental health caseworker and raised 2 kids with mental health concerns. Okay here it goes. When I have inflamation, sometimes I get anxiety with extreme fears that in truth could be identified as paranoia. The worse part is working while feeling like this. I want to shut the world down and just flee to my home. I don't know what stuff you get, but I know how horrified I feel when I get it. Maybe we should put a thread out there and ask how many others get hit this way. We can't let stigma keep this piece out. I was honest with my boss and she just felt sorry for me. Thank God! She could have really gotten weird, ya know? Hang tight and I hear you well! Tammy
I have SLE, Raynauds, mitrol valve prolapse,Haushimotos thyroiditis.
Meds I'm on are Prednisone, Vitamin D, Hydroxchloiquin, amitriptylin, levoxyl, colchcine, mobic, flexeril, and lyrica
Rom 8:18-19 "I consider that my present sufferings are not worth comparing with the glory that will be revealed in us." 

Veteran Member

Date Joined Sep 2005
Total Posts : 2573
   Posted 5/8/2009 3:06 PM (GMT -6)   
I am so sorry you are having such problems. I understand the mental issues, they are frustrating and come up when you need them least. I left the oven on the other day, luckily hubby noticed and shut it off but when I remembered turning it on 2 days later I was away from home and freaked. I felt like an idiot when I thought about it cause who wouldn't notice an oven turned on to 500 when they stand in front of it to get a drink from the fridge? But back to you, please feel free to unload here, that is what we are here for. I really hope your day improves.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, damaged periphrial nerves 2007, exema
Tx: plaquenil, Enbrel, Tramadol, Singulair, Skelaxin, Baby Asprin, Imuran, Prilosec, lasix, Evoxac, Celebrex, Darvocet when things get too bad, prednisone again, various vitamin/mineral supplements, cozar

Veteran Member

Date Joined Mar 2006
Total Posts : 2608
   Posted 5/8/2009 5:57 PM (GMT -6)   

Thank you! You've just said exactly what I've been wanting to say for some time but have been afraid to say. Boy do I understand. Sometimes saying it makes it seem more real but it also feels good to get it out. I know about the cognitive stuff. I tried to pay bills today but didn't get very far. To quote you, Arggggg!

I'd say that I'm sorry you feel that way, and I really am, but that's not what you need to hear. Thanks for making it ok for me to vent. That stiff upper lip sometimes gets so swollen that I think it's going to fall off.

Let's just remember that this disease is a roller coaster ride -- physically and emotionally -- and I think we're both heading downhill. I hope it turns around for you soon.

Love you,

SLE, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.

prednisone, plaquenil, arava, neurontin, synthroid, triamterene, actonel, niaspan, tri-est, cymbalta, tricor, acifex

Veteran Member

Date Joined Oct 2004
Total Posts : 2244
   Posted 5/8/2009 9:05 PM (GMT -6)   
((((( Lynnwood )))))) you have described how I have been feeling too............ ARGGGGG! I have no words of wisdom (I may think of some as I'm falling asleep tonight) but I wanted you to know you are not alone, I hope we ALL realize that. I do hope things get better for you soon. Try pampering yourself with a night hit bath, some hot tea, manicure, pedicure, a nice pastry.... something! Love ya!
Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Lupus, Sjogrens, Raynaud's, Hashimoto's and Celiac Disease
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Folgard OS (B12), Vitamin D-50,000 IU, Darvocet (as needed) and magic mouthwash (for mouth sores)

Barbara Lee
Veteran Member

Date Joined Sep 2003
Total Posts : 2889
   Posted 5/8/2009 10:09 PM (GMT -6)   
Hi Lynn:

I'm sorry things aren't the best. I know and understand how you feel. I just wanted to say know I'm here for you if you need to call me. Hang in there sweetie it will get better.

Hugs to you and I'm pulling for you.

dx fibro, SLE, glaucoma, cateracts, bells palsy, depression, migraine headaches, gastreopaersis, chronic anemia, RA,MDS (Blood Cancer). Tons of meds.

Veteran Member

Date Joined Jun 2006
Total Posts : 1650
   Posted 5/9/2009 5:41 AM (GMT -6)   
(((Lynnwood))) *#*^ Argg is right!! U know I'm having lots of mental problems right now. I'm going for a brain MRI and MRA at 8:00am today. I too was doing better, but had a relapse this week. When I went to the doc I was stuttering so badly, I just kept apologizing for taking so long. Tim gives u his best. I gotta go. Love, Donna 
Systemic Lupus ('05), depression, diabetes, fibro, gerd, hypertension, IBS, sleep apnea  Rx: Cellcept, plaquenil, prednisone, celebrex, lisinopril, actos, lipitor, nexeum, prozac, seroquel, wellbutrin, actonel, tylenol arthritis, neurontin, phenegren, flexeril, vit C, multi vit, flaxseed oil.  Acupuncture  "Welcome to lupus, where the strange is ordinary and nothing is normal." Donna 

Veteran Member

Date Joined Jan 2005
Total Posts : 8616
   Posted 5/9/2009 6:47 AM (GMT -6)   
(((((((( Lynnwood )))))))))))

THANK YOU!! for expressing that so well!! I could host the optimist show too . . . sometimes. rolleyes I could host legitimately at times and at times, I am a very good actress. Acting serves a purpose a lot of times . . . but not always. Understanding our own needs, limitations, etc. and being able to express them is the most basic step in good mental health. So you have helped us all by expressing yourself so well.

Sorry you are in "that place" again . . . and I hope you are feeling better soon.

Group Photo of the HealingWell Lupus group shouting Arghhhhhhh!!!!

cool rolleyes smhair scool devil blush tongue smurf :-) shakehead smhair sad mad cry eyes sad :-) tongue smurf scool blush devil eyes scool sad smilewinkgrin :-) :-) wink shakehead redface blush smurf sad scool eyes :-) tongue devil blush cry :-) rolleyes eyes sad :-) tongue smurf scool blush devil eyes scool sad smilewinkgrin :-) :-) wink shakehead redface blush smurf cool rolleyes smhair scool devil blush tongue smurf :-) shakehead smhair sad mad cool rolleyes smhair scool devil blush tongue smurf :-) shakehead smhair sad mad cry eyes sad :-) tongue smurf scool blush devil eyes scool sad smilewinkgrin :-) :-) wink shakehead redface blush smurf sad scool eyes :-) tongue devil blush cry :-) rolleyes eyes sad :-) tongue smurf scool blush devil eyes scool sad smilewinkgrin :-) :-) wink shakehead redface blush smurf cool rolleyes smhair scool devil blush tongue smurf :-) shakehead smhair sad mad tongue smurf scool blush devil eyes scool sad


Veteran Member

Date Joined Dec 2008
Total Posts : 2386
   Posted 5/9/2009 6:53 PM (GMT -6)   
Our virgen eyes wont like the nasty words, please save us from the visuals. I'm so sorry you are having a hard time. Remember all of us are hear for you. And God wont put you through what you cant handle. It may seem you cant handle it, but you can one day at a time. Keep talkin to us hun.
Smurfy Shadow/Desirèe 
DX: Wegener's Disease, Migraines, Diabetese Type II, PCOS, Lactose Intolerant, Benign Heart Murmer, Depression, Asthma, Asperger's Syndrome, Necrotizing Gramultous Inflamation in eye, A.D.D., Acid Reflux, Tumor Behind the Eye, Carpal Tunnel, Fibromyolgia, Clasterphobic, Arthritis
Medications:  Tri Nessa, Percocet, Metformin, Prilosec, Protonix, Zantac, Advair, Cingulair, Albuterol, Calcium + Vitamin D, Pro-Air, Pepcid, Rolaids, Zofran, Compuzeen, Refresh Plus Eye Drops  PRN: Epi-Pen, Albuterol Nebulizer, Benedryl
Undergoing Radiation Taking Lorazepam (Ativan) on Radiation Days

Regular Member

Date Joined Oct 2007
Total Posts : 323
   Posted 5/10/2009 12:04 AM (GMT -6)   
I think we all need punching bags only if we had the strenght to hit it... Sorry Lynnwood you are feeling so bad. Vent all you want were listing. Hope you will have a better day tomorrow. Take Care
Asthma,Lupus,H.B.P.,Dermatomyostis,Gastrparsis,Acid Reflux   
                Panic Attacks,Osteopenia,Thyroid  
  Advair,Diovan,Actonel,Prednisone on and off Eye Drops,VitaminD.     

Angel MJ
Regular Member

Date Joined May 2009
Total Posts : 36
   Posted 5/10/2009 4:32 AM (GMT -6)   
aaaarg! indeed ... stuck is a word i try avoid (positivity is usually my forte) EXCEPT once a month (if the mentsraul cycle stays regular)
but you are quite right ... we are stuck in this for the better and the worse ... like a marriage with no divorce options.

i have been told ny my rheumie that ALL my symptoms are depression (they aren't) wants me to start on AD ... why so they can keep adding them and try this try that and ... breakdown ... i fired him! also he says my lupus is not active - what by looking at me? i thought it was an invisible disease not i was invisible to him ... i have over 25 symptoms ... i see the swelling but doc knows best hey? NOT
i have noticed that now i am in my 30's things are just 'aaaarged' up ... so as we accept & adjust to the challenges we are facing we enter into a new decade and everything changes ... AAAARG!
this decade 30's = major hormone involvement ... i lost it a few days ago ... i 'attacked' a packet of 2ply toilet paper (still usable so i didn't do a good job lol) i specifically picked on that item as it soft and cannot 'hurt' back ... my dogs scattered and avoided me for a day but to get that pent up toxicity out was kinda better ... okay so i used my energy and could'nt brush my teeth & hair or bath but it did feel good to have a release ... i stopped meditating as my chinese doc told me that smoking & meditating don't go ... so i am 'scared' to meditate now so i bottle everything ... or i turn nasty & i get extremeley verbally manipulative borderline abusive ... poor hubby is gettng depressed too. i hate myself for this.

lynwood 2 questions (food for thought) are you female and what decade of your life are you in? (please feel free to email incl. profanities - just to get it out)
i guess we are all just hanging in there ... other times we swing about but hopefully it gets manageable & when not then aaaarg away.
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