Living with Lupus

A fairly normal week

By on February 26, 2013 1:17:44 PM from JoeUser Forums JoeUser Forums

KarmaGirl

Join Date 03/2001
+119

Wow, has it really been almost 3 years since I wrote anything on here?  

As a little background, I have had Rheumatoid Arthritis since I was 12.  Later in life, I was diagnosed with Lupus with secondary fibromyalgia.  I'm pretty much an auto-immune nightmare, but I still try to function as much as normal.

Anyway, a while ago (right before Christmas), I posted a "week of lupus" on FaceBook, and a few people said that I should blog it somewhere so that others could see it.  So, here it is, a week of living with Lupus:

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For the fun of it, I am going to post each day for the next week about what it's like having Lupus. I don't think many people understand how random it can be. So, this is today: (day one): Awakened at 2am with a strange sensation in the hand that was under my face. Soon to realize that it was filled with blood from a wicked nose bleed. Half hour later, back to bed. Woke up to back pain, hip pain and chilblains on my toes (look it up if you don't know what it is) Probably from walking on the cold floor while dealing with nose bleed. Got moving- add stiff neck to the list. Any of it slow me down? Nope- nothing new for having lupus. Sleep total for the night = 6 hours (pretty good!)

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A week of what it's like to have Lupus-day 2: couldn't fall asleep. Another nosebleed at 4am. Fell asleep at 5am, then woke up at 8. Weird rash for no reason. dizzy feeling + the sensation of boiling water running down my thighs + my typical joint pain. Sound weird? Not to me. Sigh. Total sleep last night: 3 hours. (Typical)

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A week of what it's like to have Lupus-day 3: So, this is my third day of posting about the typical life of somebody who has Lupus. To be clear: this is just normal for me. This isn't a "flare", this is just typical life that most people never see because it's usually not visible. 

Ok, so I actually fell asleep at midnight last night...but that lasted an hour. Was too tired and cold to get out of bed. Slept a little off and on. Tried to imagine Dorothy looking at the animals sleeping at Sasha Farm. Started thinking of little Louie the pot bellied pig and how fast his tail wags...that didn't help me fall asleep, but it made me smile. Got up at 6:20, felt like I was running a fever....temp was 97.1. WTF? Not a fever, so off to the shower. At this point, I realize that the new shoes that I wore yesterday took chunks out of my heels. My pain tolerance is stupid and I didn't even know..until soap ran over them. Ouch. Out of the shower- I'm purple from being cold, have hives and feel hot. Lupus, go home, you're drunk. OK, hands and feet were hot from shower, and now cold- they turn almost black (thank you Raynaud's). It's a good thing my husband doesn't shower with me- he'd probably think I was undead and stab me in the head.

Blow dry hair- chunk falls out. Looks like it had a lot of grey hair in it, so I have mixed emotions over it falling out. Start getting dressed and realized that my right knee doesn't want to bend. Go through PT routine to get it working, get dressed and head downstairs.

Typical pain for the day is there (joints, back, hips, some muscle groups). Knee not happy. Burning sensation in thighs still there (better get the liver checked out) and stabbing pain in back (freakin' spongy kidney yelling at me). Off to work! 

Arrive at work to super awesome assistant with Starbucks (thanks Emily Ellis Fraley!) Which is good since I only had about 3 - 4 hours of broken sleep last night.

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A week of what it's like to have Lupus-day 4: If you haven't been reading these, these are just posts of what my normal life is like. Read 1-3 before these if you really want to, LOL.

Body temp was low all night, so I was cold all night. Jeff wasn't cold, and he's always cold, so it was just me. Fell asleep at about 2am. Woke up at 3:36 sweating like crazy. Nice. Got cooled down, got back to sleep as Jeff's alarm was going off at 5am. Stayed awake until he got out of bed at 5:30. Fell asleep at 6am and slept through my 6:25 alarm. Crap. Body temp: 97.8 - at least it's higher than yesterday. What causes that? Probably thyroid related. Even though I had it removed, it's decided to grow chunks back and screw up my hormones again. Sweet!

As I was putting on my all cotton clothes, it reminded me of one of the things about Lupus that drives me nuts- skin allergies. I am allergic to most perfumes, cloth unless it's at least 95% cotton, acrylic (which means that getting my nails done can end up in swollen fingers if they don't keep them away from my skin), a lot of hair products, most lotions, and various things that nobody would even think of. Oh, and I can only wear gold earrings/nose ring or my body will swell up and reject it (learned that the hard way with a piercing- thought it was infected only to find out it was a reaction to the surgical steel). The kicker is in the summer- I burn and get sun rash, but I've yet to find a sunscreen that I don't have a reaction to that is worse than a burn/sun rash.

Pain is at a fairly normal level today. The only exception is that I woke up with a stiff neck. That on its own isn't bad, but I have a nerve issue in my neck which causes partial blindness in my left eye when I get a stiff neck. If I was smart (which I'm not) I would have brought my heat pack with me to work. Oh well, gives me an excuse to sit with dogs and watch TV when I get home, right? Sure....that's after I go to the store, make dinner, and do whatever else needs to be done. Then maybe 1/2 hour on the couch before bed. LOL

Sleep total for the night: Maybe 3 hours?

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A week of what it's like to have Lupus-day 5: Wow, 5 days already? Doesn't feel like anymore than 10.

Since we were up at the Pied Piper working on it all last weekend, we didn't get our tree up like we normally would, so we put it up last night. In hindsight, that was stupid. I mean, what was I thinking moving at all at night? Jeff did put the tree skirt on for me, and at one point looked like he was passed out under the tree. So, I started signing John Denver's classic "please daddy don't get drunk this Christmas". That had nothing to with Lupus, but I just thought I'd share.

So, went to bed about 11:30, fell asleep at a little after midnight and didn't wake up until Jeff's alarm went off at 5am. Didn't sleep after that, but it was nice not waking up. Tried to get out of bed at 6:15. Hips decided that putting up the tree was too much for them and that they no longer wanted to move. Bastards.

Finally got out of bed at 6:40. Stumbled through the shower, knocked my nose ring out when washing my face, couldn't bend over to pick it up. Left it there until later. Started getting ready- realized that I had what looked like zits all over my face. It seemed like a good idea to squeeze the one that was right between my eyes (zit bindi)......that was not a good idea. Not a zit at all, and all it did was cause blood to run down my face. Looked like I got shot. Thought of taking a picture, then remembered that I was still naked. Obviously a new rash, so I slapped make-up on and moved on. Went to put deodorant on (I can't use antiperspirant, BTW, as I end up with plaque like rashes from it) and realize that the rash on my face is also under my arms. Great, no deodorant today. Sorry co-workers.

At this point I think I am ready, but then I remember the nose ring that is in the tub and not in my nose. I stumble around like an 80 year old on meth and finally get a hold of that little jerk. Instantly realize that my grip strength is missing today and drop it down the drain. Fuuuuuuuuuu.......glad I have a couple spares. Sigh.

Off to work I go. Get on the expressway and feel something warm on my face. Crap...another nosebleed. Stuff tissue in my nose and keep driving. Start getting funny looks from people passing me. Decide that the only thing to do is crank up the Christmas music and start singing so that I look like a complete tard when people drive by. Funny looks turn into people laughing, so at least somebody had a funny story about their commute.

Pain level is higher today. Back and hips are very much not happy with me. Liver and kidney seem to be happier today, though, so that is good. Total sleep last night = ~5 hours. Pretty good!

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A week of what it's like to have Lupus-day 6: Hey, we're getting close to a week already.

Had a pretty chilled out night. Volunteered at Sasha Farm, went home, ate dinner, did some paperwork, then sat on the couch and watched SNL Christmas until I was told to go to bed.

Actually fell asleep and stayed asleep for 4 hours. Woke up, then fell asleep for another hour. Seems like after that I'd wake up feeling good. Nope. Woke up to my entire body hurting for no good reason. And, by "hurt", I mean that it was hard to even move.

So, off to the shower (if you haven't noticed, that's a habit of mine). Figured the warm water would help me out. Take a nice deep breath and realize my lungs feel like somebody started a campfire in them. To be honest, it's been a few months since I was smacked around with Pleurisy. I've yet to have the bacterial version, so I'll just wait it out. It's weird the things that people with auto-immune diseases tend to get. I have a feeling that a lot of people get Pleurisy, but it never manifests to a degree that they view it as anything but part of a cold. However, with Lupus, nothing is ever simple. Your body over reacts and tries to kill off everything- including your own cells.

So, today I have general pain everywhere and my lungs feel like they are being exfoliated with a cheese grater. Not the best day I have had, but definitely not the worst. At least I didn't get another nose bleed today, so there's that.

Total sleep: about 5 hours (pretty good!)

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A week of what it's like to have Lupus-day 7: We've finally made it a week!

I did a whole lot of nothing last night. Was just tired and worn out feeling. Dogs appreciated me sitting on the couch with them. The only thing I actually got done was ordering a crate liner for the dog's crate. I also complained that I ordered a leg lamp and Amazon lost it, so I had to order it from the Christmas Story Museum store, which ended up costing less. However, I don't have it and I'm angry. Why? No good reason at all.

Went to bed at 10:30. Fell asleep at about 12. Woke up after having a really weird dream. Really shouldn't have watched Fargo last night. Felt sorry that I sent Brad (my BIL) through a wood chipper. Fell back asleep and pretty much stayed asleep other than the part where my snoring disturbed the dogs and they started growling at me. I must have sounded like a badger or something....

Woke up with a headache behind my right eye (it's still there). It's the kind that you get when your sinuses are really stuffed up. The problem is that mine aren't. I hate headaches more than anything. It's the one pain that I have yet to figure out how to deal with. My body is all like "hey! your knee is swollen and inflamed, I'll just ignore it" but with headaches, it's all like "Code red! There's a headache! All pain on deck! We're taking her down for the count!" I hate headaches. And, this one has no reason for being there. I can only assume that it is blood gathering up there so that it can let loose on my way home. I think I better prepare for the great nosebleed of 2012.....or I'll just let it run all over my face and take pictures of people's reactions as they drive by. One of the two.

Still tired and achy this morning. Not really sure what my general pain level is today because the ONLY pain my body will pay attention to right now is this freakin' headache. Even a nice warm shower didn't help it. (My day just isn't right without starting off with a shower). I thought about drilling a hole into my head, but I only own drill bits for wood and metal, none for skull. Sigh. I need to work on that. I'll add that to my Christmas wish list, right up there with a new hip.

Total sleep last night: About 4-5 hours. Not bad. 

Hope you enjoyed my week of living with Lupus, I know I didn't! Hehe

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February 26, 2013 3:59:50 PM from WinCustomize Forums WinCustomize Forums

All I know, KG is that the disease sucks, but that you've kicked ass since day 1 on WC. Thanks for all you do.

Special shop dedicated to you.

 

 

I wish we M.D.'s had more exposure to a journal like yours, KG.

I also wish we were farther along in curing it.

 

 

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February 26, 2013 4:32:54 PM from WinCustomize Forums WinCustomize Forums

Angie....since we are the sum of our parts.....would you be the nice person you are without it? ....

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February 26, 2013 5:12:01 PM from WinCustomize Forums WinCustomize Forums

I'm always impressed that some people can learn to live with something like that always present in their lives. I don't think that I'd be very good at it. May it just go away.

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February 26, 2013 8:51:58 PM from WinCustomize Forums WinCustomize Forums

Now I feel bad about going for my disability. I'm such a wimp. 

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February 26, 2013 10:03:55 PM from Stardock Forums Stardock Forums

Thanks for all the support!  There is a big difference between me and people who develop a disease later in life - I don't remember a time without it.  I doubt I would deal as well if this would have been instantly dumped on me as an adult.  I don't know what it's like not having pain, so i've learned to deal with it on a different level.  However, I have also ignored it too much and ended up in the ER, so that's not always good.

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February 26, 2013 10:09:37 PM from WinCustomize Forums WinCustomize Forums

I have many of the same symptoms and a few others, though not for the same reason.  I don't have Lupus, but I do have osteo arthritis and fibromyalgia, so I know how you feel in that regard.

I also suffer with constant vertigo and profuse sweating, so not only do I hurt like buggery most of the time, I feel ill and nauseous to go with it.

As for the headaches, I wake with one most mornings, but mine are caused because 3 of the vertebrae in my neck have no discs so it's just bone grinding on bone and pinched nerves.  Got the same thing in my lumbar spine, and some days it's all I can do to get out of bed because my legs don't want to work so well.

My sister, who is also named Angie [actually Angela], is afflicted with it also, as is my mother, although not as severely as we are.  It seems we inherited it from my great grandmother Southcott, who was/is a direct descendent of Joanna Southcott, the famed British prophetess [1750 - 1814].

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February 26, 2013 10:32:39 PM from Stardock Forums Stardock Forums

Spine pain is a bugger. I have arthritis in my spine, and I feel paralyzed sometimes.

My legal name is Angela, BTW.  I think my issue is that my ancestors were hanged for witchcraft, he he

 

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February 26, 2013 10:34:59 PM from Sins of a Solar Empire Forums Sins of a Solar Empire Forums

My mother-in-law will soon by dying of Lupus. But I will tell you this. She lived far beyond what even the doctors believed possible. They gave her six months. She has gone almost 16 years. And she lived life to the fullest possible. When she had to change her diet (she makes vegans look like pigs) she learned to enjoy it, finding ways to make good fun meals out of her restrictions. She has enjoyed her grandchildren when she had her high points. And yes, she has had her low points. And she is currently in the lowest point of all. But she keeps fighting and she keeps trying to love life around her.

So keep fighting, keep living, keep loving. Especially at the lowest points.

 

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February 26, 2013 10:45:46 PM from WinCustomize Forums WinCustomize Forums

My second wife's name is Angela. She's in prison for murder.

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February 26, 2013 10:46:06 PM from Stardock Forums Stardock Forums

Diet can really can do a lot.  I'm a vegetarian mainly due to health.  I think my liver would be shot by now otherwise. I also don't drink, even though I really want to some days.  Coffee is something that they will have to pry out of my hands....or maybe just bury me with it.  I hear about people dying suddenly from lupus, so I try to live for the day.  Enjoy the small things and don't sweat what you can't change.

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February 26, 2013 10:50:29 PM from Stardock Forums Stardock Forums

Yikes, Redneckdude!

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February 26, 2013 10:58:11 PM from WinCustomize Forums WinCustomize Forums

Quoting RedneckDude,
My second wife's name is Angela. She's in prison for murder.

I had this urge to say...."but...but...but...you're still alive!!!"

...but I resisted...

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February 26, 2013 11:05:29 PM from WinCustomize Forums WinCustomize Forums

Angie, a great insight into what is quite a debilitating condition. Chin up, lady. Good to hear from you. Miss seeing you around here on WC. 

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February 27, 2013 3:05:18 AM from Sins of a Solar Empire Forums Sins of a Solar Empire Forums

I feel like a sap when I complain of my arthritic knees from driving buses which will be 18 years in June. God bless you Angela. You too Starkers, had no ideal. No wonder your wit is so strong... And Ryat, spreading the love to your family as well...Red Neck Dude, that's one way to de-rail a train, gonna assume she killed after you parted ways, otherwise there is a ISP cable draped over cemetery plot just like that classic Twilight Zone episode...

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February 27, 2013 4:41:56 AM from WinCustomize Forums WinCustomize Forums

holy f*ck Angela!!!!   I had no idea at all you were living like this....

all i can say is, you got some tough spirit there girl... I admire your strength so much!!! (goes to show what i bitch about is NOTHING)

God.. all i can do i just shake my head in bloody awe....

well you get major hugs and luv  from me! !!!!

 

luv kitty

 

oh and ps, yeah dont you just HATE it when you lose a piercing down the drain??? lol one time i was in a shopping mall and just purchased a new labrett, so i decided to go into the toilets to change it.... ha, down the drain it went, i swore like hell for about 5 minutes and finally decided to just go buy another one.

 

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February 27, 2013 11:11:58 AM from WinCustomize Forums WinCustomize Forums

Quoting Jafo,



Quoting RedneckDude,
reply 9
My second wife's name is Angela. She's in prison for murder.


I had this urge to say...."but...but...but...you're still alive!!!"

...but I resisted...

LOL...resisted, not for long tho, huh.

Nut...lol!! 

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February 27, 2013 11:19:41 AM from WinCustomize Forums WinCustomize Forums

Quoting KarmaGirl,
Yikes, Redneckdude!

I'm fairly certain my first wife, now deceased, had Lupus. Along with RA and some other problems.

She had a lot of the same problems you have, but she was a drinker too, ended up losing a lot of weight, in and out of the hospital, finally losing a leg, then shortly after passing away.

 

She got Lupus after our divorce, so I don't have any specifics, but she went through some hell, like you are.

 

I have a lot of respect for you, dealing as well as you seem to. I whimper over a little arthritis, diabetes, and a few bulging discs...again...I'm such a wimp.

 

You, Karma Girl, are SuperWoman.

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February 27, 2013 12:12:41 PM from WinCustomize Forums WinCustomize Forums

Quoting KarmaGirl,
Spine pain is a bugger. I have arthritis in my spine, and I feel paralyzed sometimes.

That's what I mean when I say my legs don't want to work, not that it stops the pain like people say paralysis does. Still, I'm more fortunate than my sister.  She has had both hips replaced, but one leg is now longer than the other and her issues with walking are in some ways worse.  My right hip needs to be replaced, but the medicos won't touch it until I'm 65 at least, meaning I've another 5 years to wait.

Quoting KarmaGirl,
My legal name is Angela, BTW. I think my issue is that my ancestors were hanged for witchcraft, he he

Yeah, it's a nice name, and I'm not saying that because of my sister.  It really is a name I like.  As for the witchcraft stuff, if my great, great, great granny Southcott had been around Salem in the day, I reckon they would have burned her at the stake for her beliefs... and prophesies.  The fact that she foretold things that actually took place would have scared the c**p out of 'em and got her baked, I'm sure.

Quoting G_Bison,
You too Starkers, had no ideal. No wonder your wit is so strong.

I believe that it helps immensely if one can maintain a sense of humour when afflicted/in pain/suffering illness.  It's not always easy, though.  Some days I can't see the funny side for the pain, so I take some meds and curl up in bed until it passes.

Quoting Vampothika,
i swore like hell for about 5 minutes

What, you swearing?  Nah, don't believe it!  Not you!

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February 27, 2013 6:59:26 PM from JoeUser Forums JoeUser Forums

I'm sorry to hear about this Angie... you're one of the nicest people I've ever met on any forum. My Aunt Ella had Lupus. She never really talked about what it was like or anything, but I know it was a tough thing. Wishing you to feel better.

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February 27, 2013 8:43:46 PM from Stardock Forums Stardock Forums

Starkers, a sense of humor is a must, though it isn't always easy.  I have had total breakdowns that required my hubby to talk me back to my senses.  He keeps reminding me that this is the only body I have, so even though I'm far from perfect, all I can do is make the best of it.

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February 28, 2013 4:12:06 AM from WinCustomize Forums WinCustomize Forums

Quoting KarmaGirl,
Starkers, a sense of humor is a must, though it isn't always easy. I have had total breakdowns that required my hubby to talk me back to my senses. He keeps reminding me that this is the only body I have, so even though I'm far from perfect, all I can do is make the best of it.

Yes, being able to laugh in the face of adversity can have such an uplifting and positive effect.  Even on worse days than others I try to think of something amusing to make me smile, if not laugh... and Shaunna is a great source of amusement when I'm finding it hard.  She has the ability to come up with something funny to distract me.  So yes, having a supportive and caring partner with a great sense of humour is not just a bonus but an asset.

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February 28, 2013 7:30:32 AM from WinCustomize Forums WinCustomize Forums

that's an informative plus insight into a disease most people know little about....appreciated knowing more about it not just in text book fashion... but how it affects a person personally day to day...... kudos to you for the way you handle living with it fulltime and don't let it get the better of you...just get on with life...

 

just read this story highlighted by World Rare Disease Day today... link   ...it's very sobering to think of all the people, including yourself, who cope with these things on a daily basis... all their lives, with little hope of a cure because it's not one of the more common diseases that get the bulk of research money...  

let's not forget supportive parters... and family carers too.... so often their loving care and invaluable, quiet contributions go unrecognised.....

sounds like you have a very supportive hubby to help you through...  

 

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February 28, 2013 1:07:30 PM from WinCustomize Forums WinCustomize Forums

My sister has suffered from Lupus for nearly 40 years, & has always led a very active life in between lengthy spells in hospital, the diease has affected many parts of her body over the years, her most recent problem being her kidneys, & is only a whisker away from dialysis. Last week we celebrated her 70th birthday, and she is remarkably fit for her age, despite the Lupus, horse racing is her passion, and she has trained them despite her illness, and still rides out for her friend, who has a training licence.

I do know a bit about living with an illness that causes problems 24/7, as I suffer from a rare metabolic disorder, the main reason I do skinning is because I can get totally immersed in it and I forget how miserable I feel, I have always been able to push on to do things, but every time I do, it's as if a piece of me has gone, and I am unable to reach the same levels again. I am going through a particularly bad patch at the moment and I cannot concentrate on skinning, every time I try I end up a complete wreck, and take days to get over it, and is the reason I have not uploaded anything for a long time.

I agree that humour helps you through the bad times, I have two daughters that have the most amazing sense of humour, in fact my family is great, they always know when not to talk to me, as I get so worn down that I cannot talk to anyone, my wife certainly drew the short straw when she promised to look after me in "sickness and in health" nearly 42 years ago.

 

 

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March 1, 2013 10:04:01 AM from Stardock Forums Stardock Forums

I think I feel more sorry for my husband than myself- he has to put up with me!  Haha.  He knew that I had arthritis and thyroid problems before he married me, but Lupus was diagnosed after I had our daughter.  I went completely bald and was quite sick, so they finally figured out why all the weird things happened to me over the years.  Poor guy has to deal with a lot.  As much as I hate him telling me I'm doing something I shouldn't (like drinking 2 Starbucks in one day) he really helps me keep on a healthy track and focused on just living.

Celebrating a 70th birthday with Lupus is great!  There are many that never get that old.  Has she given up meat yet?  It can take a huge strain off your liver and kidneys since your body won't have to deal with all the ammonia that is caused from digesting meat.

I think I'll write another post about what I do to keep as healthy as possible.  It's been trial and error, so maybe it will help some people.

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March 1, 2013 10:24:02 AM from WinCustomize Forums WinCustomize Forums

Quoting KarmaGirl,
I think I'll write another post about what I do to keep as healthy as possible. It's been trial and error, so maybe it will help some people.

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