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View Full Version : Feeling good even with grocery list of symtoms or infections...



bunny28
05-31-2011, 05:34 PM
LOL!

Okay so this would probably sound weird to just about everybody in my life but it is a thought I had yesterday and giggled to myself. Then I figured just about the only people who would get what I meant were likely in here...

So I will start by saying, I still consider myself a "lucky" lupus patient. My symptoms have not really been scary in the past and aren't now.

I have now been on Plaquinil for 4 mos and I really am starting to feel better. I no longer have almost daily migraines and my energy leve is improving.I can participate in family life after a full day of work. I am more involved in my son and husband's evening routines, etc. Yeah me!

Then about two and a half weeks ago, I started getting hit with infections, laryngitis, an ear infection, etc, etc. I took anti-biotics and got my voice back but things have been a little haywire ever since.

So yesterday I was in my room taking "inventory" and here is my current shopping list of issues, (sorry for the TMI re: female stuff later in list)

Pink eye
Mouth ulcers
Ear pain
Swollen lymph node in neck
Sore throat/trouble swallowing
Raspy voice
Rash (sun-related despite SPF 60) over forearms
Yeast infection
Seperate rash of unknown origin on my toes - extremely itchy

And after taking "inventory", I thought to myself and yet, this is a good day! I feel so much better than I did 6 months ago and before my diagnosis. LOL....It's amazing how one's perspective changes isn't it?


Thanks for letting me say it to someone!

(Just a note, I saw my GP when it all started and I go back to my rheumy in about 2 weeks for a check-up so I am just rolling with it for now.)

tgal
05-31-2011, 05:50 PM
LOL Isn't it funny how our perceptions changes ans what become to see a a "good day"? LOL Lovin you right now Bunny!

Bonita
05-31-2011, 06:12 PM
Every day seems to be a surprize. Bonita

lovedbyHim
05-31-2011, 09:40 PM
When people ask me, " How are you doing? I honestly say, "Good! How about you?" Then I walk away and remember, my feet are swollen, I gained 30 pounds in months, I'm so brain fogged and on so many pain meds I can't remember I am sick! Lol

tgal
05-31-2011, 09:43 PM
When people ask me, " How are you doing? I honestly say, "Good! How about you?" Then I walk away and remember, my feet are swollen, I gained 30 pounds in months, I'm so brain fogged and on so many pain meds I can't remember I am sick! Lol

LOL I am so glad I am not the only one that does that! Then I wonder why people don't get that I am sick!!

Shaztwirl
06-01-2011, 01:43 AM
I think it's a natural response to say "I'm fine" if people ask us how we are. Mainly cos if we really told them they'd look at us funny and suddenly remember something important they had to do!

lovedbyHim
06-01-2011, 02:36 AM
Lol this is solo true! Imagine our true response, "well let's see...my gums are bleeding, I have ulcers in my mouth, my hair is falling out, joint ache, muscle spasms, head hurts & rash that won't heal. How about you?"

steve.b
06-01-2011, 06:30 AM
when people ask me how i am feeling.....
i like to reply with...............

do you really want to know?
or are you just being polite!

tgal
06-01-2011, 07:34 AM
Long long ago I worked in a residential drug rehab facility and there is an actually definition for FINE. Aerosmith actually wrote a song about it. I think of it every time I say that I am "fine" Please don't get offended I just had to share because of this thread.

F****D up
Insecure
Nerotic and
Emotional

Fits me on some days! LOL

rob
06-01-2011, 10:21 AM
For me, truly pain free days are a rarity, but over time, I guess I've just learned to ignore the milder stuff. The joint pain and other minor aches just get pushed to the back of my mind, like they are just background noise. And after having dealt with the hell that is a Trigeminal Neuralgia Flare, my perception of what real pain is, has changed dramatically. Many things I used to find excruciating, have been bumped way down the list of what really hurts.

Rob

tgal
06-01-2011, 11:33 AM
You explained that perfectly, Rob. Once you have something for so long you develop a tolerance for it. While I began typing this and thinking of which things am I like that with I realized I have a headache. Not a migraine just a headache. I noticed it earlier today but I had forgot about it. I think we all have to do that or we would whine all the time! Back in 98 I had an accident skating (my family has bad luck with skating) and I broke the tibie on my right leg. I 3/4 piece completely broke off and I was told then that a break like that was one of the top 5 pains a person could have. Yep. It hurt but once I had a my bouts with Trigeminal Neralgia nothing that I have ever had compares.

I have always had a high tolerance for pain (just ask my OBGYN. I freaked him out often) but i have learned that, for me, dwelling on my issues or my disease drives me crazy and it depresses me. Yes, there are days I can't get off the couch but there are days that every inch of me hurts but on the days that things are a bit milder I try to live. I really can't go outside much now that summer is here so i go out as the sun starts going down. Susie called us vampires and I like that. I still enjoy life just in a different way.

Speaking of, I don't know which thread I am highjacking but my family (extended) is taking a trip to a fabulous and huge waterpark the 14-16. We have cabins actually in the park and there is a shaded area at our cabin so I can sit outside. There are 3 pools and a 2 hot tubs where were are so there is water that I can enjoy. I KNOW there is no way I can spend all day at an amusement park but I would LOVE it if I could find a way to be able to go at least one day to the park. The park opens early and stays open late for people who are guests there so I know I could do it then. I need suggestions though on ways that I could go enjoy the water park and the sun without killing myself.

I know about sunscreen and hats but does anyone have any other tricks? (I guess this isn't really hijacking the thread because I did ask my doctor about a drink while we were there LOL)

Thunda
06-03-2011, 04:08 PM
After reading this thread I could do nothing but smile and laugh.

I finally found people that get it! 

If we really told people how we really felt either one or two things would probably be the outcome, they'd feel sorry for us or think we're complaining. Even on my bad days my automatic response is to say I'm fine just because I know they won't get it.

You guys are great!! 

rob
06-03-2011, 04:51 PM
I've been thinking about this thread, and wondering how I learned to ignore certain levels of pain. I think it started when I was in basic when I first enlisted in the Army. We had to go on progressively longer road marches (walking with a full 60lb ruck and weapon) which ended with a 30k march where we were allowed only 1 break at the halfway point. This was a biggie, because if you didn't finish this one, you didn't graduate. Fort Knox is really hilly, and some of the hills have names like Agony, and Misery (how fitting). At some point, it's like I would go on autopilot, like I disconnected myself from the fatigue, burn, and pain.

That's what it's like when I say that I relegate the daily pain I have to the back of my mind where it becomes "background noise", as I call it. I still don't really know how I do this, I wish I did so I could tell others how to do it. Of course, it doesn't work every day, and for every kind of pain-oh how I wish it did. Anyway, I'm just rambling and thinking out loud.

Rob

Gizmo
06-03-2011, 05:17 PM
I've been thinking about this thread, and wondering how I learned to ignore certain levels of pain. I think it started when I was in basic when I first enlisted in the Army. We had to go on progressively longer road marches (walking with a full 60lb ruck and weapon) which ended with a 30k march where we were allowed only 1 break at the halfway point. This was a biggie, because if you didn't finish this one, you didn't graduate. Fort Knox is really hilly, and some of the hills have names like Agony, and Misery (how fitting). At some point, it's like I would go on autopilot, like I disconnected myself from the fatigue, burn, and pain.

That's what it's like when I say that I relegate the daily pain I have to the back of my mind where it becomes "background noise", as I call it. I still don't really know how I do this, I wish I did so I could tell others how to do it. Of course, it doesn't work every day, and for every kind of pain-oh how I wish it did. Anyway, I'm just rambling and thinking out loud.

Rob

I often think about athletes and how they must get to a place where they just block out the pain. Do they feel pain less if they have surgery or get a chronic illness, I wonder? If we were able to exercise enough to get that endorphin release, would we hurt less? I know I hurt more when I am active, so it's hard to imagine.

Gizmo
06-03-2011, 05:24 PM
Speaking of, I don't know which thread I am highjacking but my family (extended) is taking a trip to a fabulous and huge waterpark the 14-16. We have cabins actually in the park and there is a shaded area at our cabin so I can sit outside. There are 3 pools and a 2 hot tubs where were are so there is water that I can enjoy. I KNOW there is no way I can spend all day at an amusement park but I would LOVE it if I could find a way to be able to go at least one day to the park. The park opens early and stays open late for people who are guests there so I know I could do it then. I need suggestions though on ways that I could go enjoy the water park and the sun without killing myself.
I know about sunscreen and hats but does anyone have any other tricks? (I guess this isn't really hijacking the thread because I did ask my doctor about a drink while we were there LOL)

If you can afford it, there are sun protective swimsuits out there that look kind of like a 2 piece wetsuit made out of lycra. Heaven knows I would create a panic I showed up in something like that, but I bet you could pull it off, Mari. If you don't care about getting in the water, then the sun protective pants and shirts are great. You can find them at golf pro shops and Columbia stores (outlet mall if you have one). Solumbra has the lightest weight ones, with sides that zip open to reveal fine sun protective mesh that breaths. I owned a pair in white about 10 years ago and LOVED them, but they are not cheap.