The swing of the pendulum

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Dakota0917
Regular Member


Date Joined Oct 2007
Total Posts : 100
   Posted 1/18/2008 9:20 PM (GMT -7)   
Does anybody else have these Jekyll and Hyde moments?  You know...one day, you can joke around about your illness...the memory lapses, bruises, etc.  And, the next day - just be madder than heck?
 
Wednesday - I was joking around with my friend about hurting my hand and not remembering what I hit it on, joking about my weight gain, etc.
 
Today, I woke up with a migraine (I had one last Thursday night, Friday and Saturday morning, too).  And, I was so tired all week it caught up to me last night...I fell asleep at 8:00 pm and didn't wake up until 6:00 am.  So today instead of enjoying the sunshine out the window, I had to close the window blinds beside my desk and have the guys in my office unscrew the lights above my desk. I WAS SO MAD!
 
AAAAAAAAAAAARRRRRRRRRRRRRRRRGGGGGGGGGGGGGGGHHHHHHHHHHHHHHHHHHHHHHHH
 
I'm tired of being tired, tired of having headaches, tired of my joints hurting, tired of no energy, and tired of my hair looking like CRAP!  I've needed a perm for two months and have been scared to get one because of all the meds I'm on.  Decided to schedule one anyway.  So - Thursday I'm going to get a perm and either I'm going to get my curls back, or it is all going to break off and I won't have to worry about styling it.
 
{CROSSING ARMS AND STOMPING FOOT!}
 
Hmmmm...this sounds remarkably like a pity party.
Hopefully, tomorrow I'll wake up without a migraine and with a better attitude.
 
{sigh}
 
Thanks for "listening"...
~Kim
 
 
 
SLE: 07/07, Irritable Bowel Syndrome, migraines
400 mg. plaquenil, 25 mg. prednisone, 2400 mg. ibuprofin, 15 mg. methotrexate, folic acid, asacol, caltrate-D, wellbutrin, paxil


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 1/18/2008 9:54 PM (GMT -7)   
Hey Kim,
 
You know what... It's okay to have a pity party every now and then.  This disease sends us on such rollercoaster rides that it totally makes sense that you would feel like a jokester one day and one angry son-of-a-gun the next.  I sure feel like that.  Especially these days.
 
I try really hard to laugh at myself and just accept what is going on.  Most of the time I can be pretty positive and just roll with it.  But man, lately, it's really tough being positive.  I am so angry and mad and ticked off that this disease has wrecked my body and caused a tremendous amount of "loss" in my life.  I do feel bi-polar in my moods a lot of the time.  It's a very hard balancing act isn't it?
 
You're taking a fairly moderate dose of prednisone I just noticed.  That can definitely cause your mood swings to be worse than they need to be!  When you start to taper down on it, you might just notice yourself feeling better in the head!!  LOL. 
 
Thanks for sharing your frustrations Kim.  We're here for ya.  We also know exactly what you're going through.  Isn't it nice to know you're not alone!
 
Have a good night, and I hope your day is better tomorrow too!
 
Ginny
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

33 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, monopril, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 1/21/2008 5:05 PM (GMT -7)   
Kim, I feel like you described almost exactly what I go through sometimes. There are days that I do alright and can stay upbeat and, yes, I joke about my weight too. And then there are other days I'm so sick and so sick of being sick I want to crawl in a hole and sleep for a few days (or months).

You aren't alone in this.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

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Co-Moderator: Lupus and CFS Forums



okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 1/21/2008 9:52 PM (GMT -7)   
Oh yeah the old roller coaster ride. I was doing pretty good yesterday and somthing set me off. I am a christian and let me tell you I said somthings that would have made a pirate blush! UIt just plain gets old, gets frustrating and tiring. Not to meantion pain and hassles and meds and people saying you don't look sick! errrrggggg! When you get the perm just tell them all the meds you are taking. They do make somthing that will strip all the meds out of your hair and may help you get a better perm. Of course they charge a little more but hey t's worth it if you get a great perm!
hang in there and rant aaway
hugs
carol
God Bless
Lupus like symptoms, with pbc symptoms, stage 4 COPD w/CHF,  Cancer survivor.  Osteoporosis,osteoarthritis
Prednisone,Plaquanil800mg,vicodin 4x5mg,Evista60mg, Effexor 150mg, HCTZ25/Triamterene37.5mg,Xanax x3,Singular,nitro spray, aciphex, diovan. 
Only two defining forces have ever offered to die for you: 1. Jesus Christ 2. The American G. I
 
 
 


Dakota0917
Regular Member


Date Joined Oct 2007
Total Posts : 100
   Posted 1/22/2008 5:20 AM (GMT -7)   
Thanks guys...  I appreciate the support.
You know - I just thought of something.  This is the one place we can come and be "normal"...know what I mean?  Everybody has the same crap going on.
 
Carol - I hadn't heard about the stuff they can put in your hair...any idea the name of it?
 
Thanks!
 
Have a great day guys...
~Kim
SLE: 07/07, Irritable Bowel Syndrome, migraines
400 mg. plaquenil, 25 mg. prednisone, 2400 mg. ibuprofin, 15 mg. methotrexate, folic acid, asacol, caltrate-D, wellbutrin, paxil


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 1/22/2008 7:05 AM (GMT -7)   

Hi Kim, no I'm sorry I don't know the name of it but it is pretty common. It's been around a long time. Just say I take a lot of meds and I want you to use the stuff you strip the chemicals out with. They will know what you mean. I have straight long hair now but when I was working and had a perm I used to have them use it. I know they still do because my friend has leukemia and she gets her hair done about ever 2 months and they use it on hers. Any salon should have it but you might try calling around. I lived in phoenix az when I was getting my done. let me know how it comes out! Nothing like a good perm to make us ladies feel nice and sexy! yeah hugs

carol


God Bless
Lupus like symptoms, with pbc symptoms, stage 4 COPD w/CHF,  Cancer survivor.  Osteoporosis,osteoarthritis
Prednisone,Plaquanil800mg,vicodin 4x5mg,Evista60mg, Effexor 150mg, HCTZ25/Triamterene37.5mg,Xanax x3,Singular,nitro spray, aciphex, diovan. 
Only two defining forces have ever offered to die for you: 1. Jesus Christ 2. The American G. I
 
 
 


Dakota0917
Regular Member


Date Joined Oct 2007
Total Posts : 100
   Posted 1/22/2008 8:11 AM (GMT -7)   
ok - I'll do a little research on the hair stuff...

I have two (more) questions...

1: What is with the weight thing? I got up today and had put on two more pounds since yesterday! I seriously do not eat a bunch of junk all day. Here's a typical day: Breakfast = Oatmeal, Lunch = Ham/Cheese Sandwich, Sun Chips, fruit & diet pop, Dinner = last night was taco salad. Flavored water through out the day. I might have had a couple cookies waiting on dinner.

I'm currently weaning off prednisone. I'm at 12 mg/day (from a high of 30 mg/day in November). I guess I didn't expect the weight to fall off as I weaned off - but I certainly didn't expect it to keep climbing.

Thoughts?

2: Does lupus affect your teeth? This morning I noticed a little chip in my front tooth and I have no idea when/how I did it. (Which, isn't abnormal for me these days to not remember).

Thanks for any insight you can share!

~Kim
SLE: 07/07, Irritable Bowel Syndrome, migraines
400 mg. plaquenil, 25 mg. prednisone, 2400 mg. ibuprofin, 15 mg. methotrexate, folic acid, asacol, caltrate-D, wellbutrin, paxil


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 1/22/2008 8:30 AM (GMT -7)   
Hi again, Yes lupus can cause teeth problems. It usually causes receeding gum prbems. (i've had to have most of my teeth pulled because they were so loose.) I wouldn't rule out that it would cause the enamel to become brittle either. You should see a dentist that knows somthing about lupus/teeth.
As for the weight gain, we all have a tendency to loose and gain a few pounds. It might be gone tomorrow. If you continue to gain you may need to discuss it with your doctor. with the joint pain we have a tendency to swell up with fluids with will also gain tempory weight. I have to keep an eye on my weight gain and loss. because I have a tendency to get fluid around my lungs and heart. I am on triamterene which is part high PB med and part diuretic to keep the fluids moving. I know your tired of being sick I can diffinently relate. I'm sorry you have to go thru this. It is so over whelming especially in the beginning. You might try watching your salt intake. I know ham has a lot of salt in it.
keep asking, I'm sure others will have another take on it so hopfully you can get it figured out.
hugs
carol
God Bless
Lupus like symptoms, with pbc symptoms, stage 4 COPD w/CHF,  Cancer survivor.  Osteoporosis,osteoarthritis
Prednisone,Plaquanil800mg,vicodin 4x5mg,Evista60mg, Effexor 150mg, HCTZ25/Triamterene37.5mg,Xanax x3,Singular,nitro spray, aciphex, diovan. 
Only two defining forces have ever offered to die for you: 1. Jesus Christ 2. The American G. I
 
 
 


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7023
   Posted 1/22/2008 9:06 AM (GMT -7)   
With prednisone any carbohydrates you eat are quickly converted directly to fat. So it is best to limit carb intake to "good carbs" - veg & fruit, rather than "bad carbs" - breads, fried things, chips, sweets.

You might want to put your ham sandwich on whole wheat bread, exchange carrots/celery for chips, fruit/diet pop to water....I've done that recently and it's made a big difference.

That said - we normally fluctuate 2-5 lbs a day as water weight comes and goes, so you may not have actually gained anything.

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Cellcept, Prednisone, Trazodone, Fosamax, Wellbrutrin SR, Valtrex
Links: DIAGNOSING LUPUS(4of11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions


Dakota0917
Regular Member


Date Joined Oct 2007
Total Posts : 100
   Posted 1/22/2008 9:09 AM (GMT -7)   
Just read something interesting about Migraines... They can cause fluid retention...didn't know that. Also didn't know you have fluid retention with joint pain...which I'm also having at the moment.

And, since I had a migraine Friday & Saturday of last week and another one yesterday & today...perhaps that is contributing to the weight gain.

Boy...we just can't win, can we?

I've decided that God only let's the strong people get lupus. This is going to sound awful...and I'll preface this with: I love my sister-in-law to death...BUT

Saturday evening she was complaining about how tired she was and how she just wanted to go home and get in her jammies (we were at a niece's birthday party). I wanted to slap her! I'm thinking to myself...I've had a migraine for two days, I'm exhausted, I hurt...yet I still had to deal with everyday life...and YOU want to go get in your jammies!?!?!?!?

She can't deal with a lot of stress in her life. (ie: She wouldn't let her daughter be on a jump rope team because of all the practices). So - I'm really glad she doesn't have an illness to deal with.

Oi VAY!

~Kim
SLE: 07/07, Irritable Bowel Syndrome, migraines
400 mg. plaquenil, 25 mg. prednisone, 2400 mg. ibuprofin, 15 mg. methotrexate, folic acid, asacol, caltrate-D, wellbutrin, paxil


Dakota0917
Regular Member


Date Joined Oct 2007
Total Posts : 100
   Posted 1/22/2008 9:15 AM (GMT -7)   
Lynnwood...WOW

Didn't know that little fact about prednisone... {BIG SIGH}

~Kim
SLE: 07/07, Irritable Bowel Syndrome, migraines
400 mg. plaquenil, 25 mg. prednisone, 2400 mg. ibuprofin, 15 mg. methotrexate, folic acid, asacol, caltrate-D, wellbutrin, paxil

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