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27 Days of Humanity

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Posted 6/4/2010 1:45 PM (GMT 0)
Well Folks, I guess my 27 days of feeling of human are over for right now, but I'm trying to stay optimistic.  I'm in the middle of a huge flare right now.  My hands are really killing me, so I may take a while to finish this.  It's easier in Word anyway.  Last Tuesday I woke so tired, dead tired, the old tired, oh crap. Wednesday I hurt, and woke up to urine that looked more like milk then anything else and a huge sense of panic.  I had my blood work drawn on Tuesday, but by the time I saw my doc on Thursday the urine was clear of anything, so who knows what that was all about.  But Thursday, my hives were back and today they are raging.  From the back of my neck to the top of my thighs, wrapping around my waist, over the tops of my shoulders and under my arms.  It's like they're creeping around to the front of my body.  They itch, hurt and burn all at once.  I was down to 5mg of Pred, now I'm back to 15mg.  I have to admit I did it to myself.  I look back and I know I did.  I don't think it was the running around.  It was either the sitting outside watching the kids play for an hour on Sunday and Monday or it could have just been the 10 miniutes I was standing in direct sunlight in the grocery store parking lot talking to a friend from church.  Wouldn't it be funny if I ruined it all for for a ten minute chit chat, but I could feel my skin cooking.   Anyway, I've gotten to the point of feeling good and will do whatever they tell me, take whatever they me to to get back there, because I really enjoyed living again.  I know I can get back there.  THIS FIGHT DOES NOT END HERE!!  I'm going to have to try to nothing for the next to weeks because somehow I've got to be well enough to make to it to Miami on the 19 of thin month.  My doctor made the comment about this trip, "Well at least you'll be able to enjoy the night life", like he doesn't want me even out of doors in the day time, I don't really see that happening with two little kids to entertain, but I certainly won't be going to the beach. LOL  I'll ya posted.  Thanks for being so very dear and kind.
Posted 6/4/2010 1:55 PM (GMT 0)
Jennifer I feel so bad for you. Raising children and staying out of the sun just don't naturally go together. If that 20 minutes was the sole reason you flared, then at least you know what not to do. I hope you'll get back to the 27 days of feeling good. And remember, if you take care of yourself, flares can be short lived.

Take care of yourself sweet friend, and feel better!

Pat
Posted 6/4/2010 2:29 PM (GMT 0)
I certainly hope so, this one is certainly a bad one. I never get hives this bad unless I run out of Plaquenil. I would love to sit in an oatmeal bath, but I'm afraid I'd have 2 sea monster diving in with me with their sharp little claws. LOL
Posted 6/4/2010 3:27 PM (GMT 0)
Oh no Jennifer, I was hoping you would continue to feel better. My prayer to you is I hope this is just a short bump in the road and you can get back to feeling so much better!!! Sending gentle hugs your way!!

Could you can have someone watch your seamonsters (lol) for a few hours while you can relax in a nice oatmeal bath!
Posted 6/4/2010 5:10 PM (GMT 0)
Hi Jennifer-I'm new to posting here but I've been reading for quite a while. Like you, I've had hives
off and on for years with SLE and vasculitis. My rheumy has me on Dapsone. Supposedly it is good
for skin issues. I'm also on the standard immunosuppresents-plaquenil and methotrexate.
It can certainly be miserable.

Anne
Posted 6/4/2010 6:43 PM (GMT 0)
Thank you, Anee and Amy. Can you believe I'm still in diagnosis limbo? But at least I'm getting treatment. I had 27 wonderful day and I know the sun will shine if only metaphorically, I know I spelled that wrong. I just have to beat this flare down in 2 week or less in order to be ready to haul the family off to blistering ot Miami to see all the Grandparents. I sure wish they would move to Alsaka. Wait, maybe I should move to Alaska, 6 months of night? wouldn't have to worry about the sun, oh but then it's light for 6 months and thta would drive me batty. And what would that do to the 2 year olds finally somewhat normal sleeping pattern? Never mind. Anyway, Thank you all for your kind words, prayers, and thoughts. I will be trying to do as little as possible, which means I will probably be posting more. So I will be talking at you soon. Thanks again. God Bless.
Posted 6/4/2010 6:52 PM (GMT 0)
I'm sorry you have fallen off the (human) wagon again! The starts & stops of this disease are enough to make you crazy all by themselves. I am glad you are getting treatment -- I know you don't have a diagnosis but addressing the symptoms is much more helpful than naming them.

It's very very easy to do too much when we're feeling good, especially when several good days are strung together. I try to remember to stop when I think I'm 60-75% of the way towards tired. nono Or if I've had lots of good days, I might have a 100% day, but it's important to make the next day a 40% day!

Hang in there, I'm on your side even if I don't always post - I read at at minimum twice a day. turn
Posted 6/4/2010 7:27 PM (GMT 0)
Thanks Lynnwood. It was that blasted sun. Talked to a friend for 15 minutes in a hot parking lot and here I am. Dumb, dumb, dumb. Well, we'll get on top of this one and get back on top. I've been there once and I'll find my way back. Thanks again.
Posted 6/4/2010 7:40 PM (GMT 0)
Repeat after me until it sinks in: "The SUN is NOT my friend, the sun is NOT my friend, stay away from the SUN, it's HOT, it's BRIGHT, it hurts me. The sun is NOT my friend!"

lol
Posted 6/4/2010 8:00 PM (GMT 0)
Yeah, Tell it to my kids. That's when it gets tough. My poor DH works all day in the hot sun then comes home to two boys that have have been cooped up with boring old Mom all day. My 2 almost 3 year old pounces on him at the door. "Joey play outside, Joey play outside, Joey playside?". The poor man is red wiped and flithy and just wants to shower and eat and drop, but he turns around and takes them out anyway. Sigh. I tried to sit in the shade with them, but I don't know if that's part of what got me this time or not.
Posted 6/4/2010 8:09 PM (GMT 0)
If you can stay in the shade -- look around you & see if anything is reflecting back at you. Perhaps take a small floor fan out with you. Keep a cooler beside you with ice water, and wipe your face and back of the neck often. Apply ice to inside of wrists as well as back of neck. Drink ice water - keep body temperature down however you can.

Use the highest sunscreen you can find - best if it has zinc in it. Even in the shade, maybe get one of those lawn chairs with an umbrella attached. If you can, use the sunscreen treated clothing (I don't, can't stand it, plus pricey) - maybe an old white long sleeved mans shirt (thrift store) to cover arms & another to toss over your legs. There is a laundry soap option that adds sun protection - I've never used it, but might be nice.

Maybe take the boys outside when the sun isn't so direct? Early morning/late afternoon, never between 11 & 3...it's not that great for them, either.

But very definitely move out of parking lot sun next time you see a neighbor!! It's direct, it burns PLUS it reflects back off of the hot tar burning even more. "I'm sorry, I can't stand in the sun, catch you later" works great.

Cheers
Posted 6/4/2010 8:23 PM (GMT 0)
Also try to spread out the sun exposure. Like first try 1/2 hr one day, then wait 3-4 days before trying again. Give your body a chance to decide how it's going to react, and figure out what kind of recovery time you might need. Just a little bit at a time.
Posted 6/5/2010 4:11 AM (GMT 0)
Oh Jennifer, I am so sorry the good times had to end (at least for now). Here's hoping that you feel better quickly. Oh, and DH sounds like a great dad!
Posted 6/5/2010 4:16 AM (GMT 0)
Thanks guys, advice heard and taken to heart. Gonna try to find a side without hives to sleep on now. nighty night.
Posted 6/6/2010 6:04 PM (GMT 0)
Well, Everyone, Still feeling pretty crappy. The hives are starting to fade a bit, but the joint pain is still pretty bad. Dummy pain doc has decided that there is no justifiable reason to continue my Lortabs at 10mg 4 times a day. He was going to cut me back to 5mg 3 times a day but after a long battle and many tear I really didn't need yeaterday , he fianlly agreed to call in a script for the 10mg but only 3 times day. So here I am in big flare having to cut back on pain meds. It's really not fair. It always happens on the weekend. This is a new doctor, and I'm not impressed. Plus besides the fact that I wrote my pharmacy number on their forms, gave it to them on my med list, and reminded them when I left they called it into the wrong pharmacy and I have no idea where and I'm almost out. I have just enought to through until Monday morning, Thank God. But I'm stressed andd this doesn't help the whole flare thing, nor does the 60mg of Pred my doc put me on. This is goin to be tough. Send me some happy thoughts, guys or my family might pack up and hide from me for a week. No wait, go ahead and let em. LOL Lord, help me get this without actually hurting anyone. Thank you, needed that little vent. Now I'm off to see what that big CRASH was in the other room and what the kids are up to. Take care and talk to you soon.
Posted 6/8/2010 10:35 PM (GMT 0)
Well, here's the latest. My PCP, an angel by the way, said we've got enough documented on the chart for him to be ble to tak eover on the pain meds. I can have my 4 Lortabs a day back. WHEW. I really hate being ttreated like a druggy when I feel my worst. It makes my DH want to Druggy huntin'. LOL MY Doc says it's a shame because even drug addicts need to be treated as sick people and it seems that all the gov't wants to do is criminalize everyone. I still feel pretty run down, but the hives are gone. Hands hurt bad, really really tired. I still got to get ready for the trip a week from Saturday and I just hope I'll be well enought to get everything done. Whew, just tireed thinking about it all. I've got no idea about dinner tonight, I'll let DH deal with it,mmmmm maybe Breakfast would be good. Take care everyone and GOd Bless.
Posted 6/12/2010 2:15 PM (GMT 0)

Hi! Jennifer,

Beaches are fun at night, too. Once the sun gets really low in the sky, like between 5 and 7 pm, that's when we planned our outside play. The kids can scoop water from the edge and play in the sand. Don't go in the ocean past toe depth, because the big fish follow the little fish into shallow water at dusk to eat them, especially baracuda. My UV resistant Coolibar jacket helped me alot when I went to visit my daughter. I didn't even feel the usual prickles and itchy hives that attack me even through the car windows, or standing in shade. Please don't exhaust yourself getting ready for your trip, I highly recommend my travel plan: KISS, keep it short and simple, pack light, play clothes can quickly be washed/dried in hotel washer or hung over a balcony with beach towels. DON'T get into a cleaning frenzy before you go. Remind yourself: If you do THIS, you can't do THAT!

Rest alot, play, rest, play, rest, you get the picture yeah hugs, and have fun, suetoo

'

Posted 6/12/2010 3:41 PM (GMT 0)
Jennifer, so so sorry you're feeling bad again. Sometimes I get mad when I've had some good days in a row because those days remind me of what I'm missing most of the time. Luckily, I've been having more and more. Let's just hope that the same happens to you. Take care,

Love,

Pat
Posted 6/12/2010 8:52 PM (GMT 0)
Well, unfortunately, I've got two big dogs and a cat that need looking after while we're gone, so we've got people staying in our house while we're gone.  So, of course we have to clean before we go and put clean sheets on all the beds and towels up etc etc etc.  They are a lovely family that we've known for years and they across the street crammed in a little house with 6 adults and 3 kids.  So 2 of the adults and 2 of the kids are staying at our house on mini vaca.  Taking care of things for us and keeoing our doggies and kitty company, while enjoying a little extra space for a change.  By the way the little  almost 3 year old got a hold of the syrup bottle this morning and now the carpets in his room need cleaning again.  But DH is borrowing on from a friend tonite so we can take our time with it. Fun, fun.    Like I said the hives are gone, but the joint pain is still pretty bad, it just makes it tough to get things done.  I've had a cough ever since back when I started this thread talking about the kids getting sick, well turns out I now have bronchitis and now I'm on Cipro.   So it's 2 yogurts a day for me to keep the yeasties away.  I'm really tired and trying to manage my pace and trying to keep the prednisone psychos at bay that seem just under my skin ready to snap if someone says just the wrong thing to me.  I keep trying to laugh off each new thing that seems to pile on top of me, like if you only knew what I was dealing with right now you'd probably be really scared to dump that on me right now. Heh heh heh. That'a an evil laugh.  So I know I'm rambling, but I'm sitting down and that's pretty close to resting.  Keep ya posted, it time to vaccum up Daddy's pipe tobacco that just got dumped in the living room.  See ya.
Posted 6/14/2010 1:12 AM (GMT 0)
turn  Well, Ya'll will be happy to know I'm taken it real slow. Didn't do much today.  Coulnd't do much today.  Movin' like a slug.  Between sun sensitivity, MTX, pred and Cipro, I can't even walk past the kitchen window.  I need one of those rings they've got on Vampire Diaries so I can go out in the sun again.  Kid's got swimming lessons tomorrow, so I'll be sliming myself up and putting on the long sleeves in 90 degree weather.  I'll let you know how it goes, but at least it's only an hour.  Off to bed,  Take care. Nighty, night.
Posted 6/14/2010 6:05 PM (GMT 0)
Here's the latest folks. Turns out I've had Strep for, oh about 4 weeks. That explains alot. So at least I can look forward to feeling better soon and hopefully kicking the snot out of this flare too. Coooked my but off in 91 degree heat at swimming lessons today, but stayed out of the sun. So it's lay down time. Talk to ya'll soon.
Posted 6/14/2010 6:29 PM (GMT 0)
Sometimes a good 91 degree sauna will cook the virus right on out of ya!
Hope that helps, feeling human is so very helpful!
Posted 6/14/2010 11:39 PM (GMT 0)
Thans Lynnwood, Actually it turned iton a brief steam room when it stormed briefly, then it just started cooking again. Went to the store, got ice cream, snacks and dinner, came home and washed off the 27 layers of sunscreen from me and the kids and haven't left the 71 degrees house since. Nothing to do tomorrow except a little tidy cleaning, resting and early packing fo the trip. Gotta start setting up my med boxes making sure I've got enough of everything down the last little pill and making arrangements for what etras I'll need of what. That's about it. Take care all and to all a good night.
Posted 7/2/2010 3:11 PM (GMT 0)
cool  Greeting Everyone!!  I'm back from Miami and Thank God!  Think of the hottest you've ever been and multiply it 20.  That's Miami in June.  I set my Mom's A/C at 71 ad the house still never cooled off lower then 78.  With all the concrete and asphalt, all the cars and people all the tall building blocking any ocean breezes there might have been, it is absolutely unbearable and the sun just bakes you.  If it rain for a little while, it is totally like walking into a steam room.  I would take a cold shower, step out and the water would just evaporate because my body was so hot.  So enough about the heat.  While I was down there I had to have a third round of antibiotics called in because the Strep was still not going way.  It finally started going away last saturday.  We did mostly family mostly family visiting, since all the Grandparents live down there, although I wouldn't be suprised if they are actually aliens from Mercury or some other extremely hot planet that have replaced all life in Miami, since it is surely no longer suitible for human habitation.  I got home on Tuesday and since we had house sitters, I hd a lot of house cleaning to do, unpacking, laundry etc., but my doggies are well cared for and seem very happy.  The kids had fun and went swimming in Grandma's pool everyday.  I couldn't go in as much as wanted.  It was way to much sun in the daytime and in the evening, I just didn't have the energy.  They have a fantastic children's museum in Miami, where everything is hands on.  The kids had a blast, it was just me and my Mom and he two kids.  At one point, the kids wanted to go in different directions so Mom took the olderone (7) and I took the soon to be 3 year old.  Well, my little Joey decided to take off running at full blast away from right into a school group.  I went running after him at full blast up a ramp and tripped diving after him.  I caught him, but also landed on my hands and knees.  My poor inflamed hands turned purple and swelled up, I had to go to the first aide station and get ice, my whole body hurt.  Miami was just full of Mommy getting hurt in one way or another.  I couldn't wait to get home.  Of course now in the midst of party planning because Joey's 3rd Birthday is Saturday.  I thought I would get a chance to rest after that, but last night my DH informs that my 16 year old step son is coming a week earlier then he origianlly told me, so he'll be here on Sunday instead of next week and he'll stay for about a month.  I feel a major flare on the winds, it's looming, my skin has been tingling with hives just below the surface for a week, my hans are killing me.  I'm so tired I could sleep for a month.  I've had migraines almost everyday since we landed in Miami and it seems they followed me home.  All I can think about is those glorious 27 days and how much I want them back.  Yesterday I drove another 2 hours, leaving the house at 6:00 am, to see a Rheumy at the Emory Clinic in Atlanta.  This Doctor seems very good and is a Professor of Rheumatology at the University of Emory as well and has been published for works on early treatment of AI diseases.  So at this point it looks like I have a really nasty case of Sjogren's.  The Rheumy said that it can make all you other blood work go screwy, make Rf and Anti-dsdna go positive so AI blood tests become somewhat useless.  Discovering if there is any other disease overlap will be a matter of waiting for definitive symptoms to show.  I hope that doesn't mean I'll be kicked out the group, though. LOL  Sorry this is so long, Had a lot to update.  I'm off to get back to my party planning.  No rest for the weary and all that.  Take care everyone and God Bless.
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