I was so surprised the first time it happened--I was at the Timberline Lodge at the beginning of a 2 week vacation/tour of Oregon, and a big flare was starting... they happened to have a sauna (steam), and I love them, so I went in... and stayed for about 30 minutes or so... trudged back to the hotel through the snow... and the next morning, my symptoms were "gone" and I had a tremendous 2 week vacation. (I had been SO worried about this flare happening at this precise time... nothing better to ruin a well-planned vacation...) I am not sure if the remission of symptoms ended because I got home and "relaxed" (you know how it 'all catches up') or what... but I look forward to seeing if I can get relief at all from this infrared one.
I'll definitely keep you all posted.
hey chichibug, im so sorry ops: i just now realze that you asked me how the lupus effects my daily life. i was rushing to get my ladybug, who's a hotshot kindergartener, off to school that day, and all heck was breaking loose! so i at least was trying to respond, but i was too hasty :?
yes, as everyone here knows, it can be hard, but it so much better than it was! it began with me having breathing problems and they kept saying it bronchitis, then pneumonia, then BANG! i collapse and was in icu and ccu for 2 months before they moved me to oncology. i was very lucky because they diagnosed it so quickly. only 5 month. so i bumped along, ups and downs, until another BANG! i had siezure and fell down a rather large flight of stairs this past oct. next thing i know, its in my brain.
so here we are...
it's not so bad at times, and just awful at others. i injured my brain along with the lupus being there, and have serious problems with my mobility, speech, and aphasia (where i cant remember the words for things-like spoon. i know what it is and for, but cant tell you what it is), and (not so significant now, but still bad enough) short term memory loss, where i cantt really remember what i had for dinner last night - nothing, blank. that's the hardest i think. especially for dear hubby. we have the same conversations over and over. very frustrating. working is hard (dern near impossible!), i cant drive, which i love to do! driving is freedom to me. thre are days i cant talk, walk, type, nothing, and i sound like a 2 year old. just today i was told by a customer service rep that i should stop playing on the phone and then hung up on. waa, waa, waa.. :lol:
i could ramble on and on, and say that it has truly wrecked havoc on my life, but, at the same time, it has truly been a blessing. it has totally changed my life - for the good! im still having my issues dealing with this, and there are days when i just want to holler and throw up both my hands! but im just so blessed. it has brought dear hubby and i so closer, i get to see just how resiliant my ladybug is, and i have some wonderful friends and family (this site included!) that have kept me going.
i know i went on and on, but there you go. and yes, it really did take almost 2 hours for me to finish this.
be well friend
Wow, and thanks for writing :)
I am amazed by your story, your spirit, and your determination. I am honored that you took the time to write to me.
I can relate to the inability to recall common words/names, and the short-term memory loss (and long term, for me, too). It drives me nuts! Also, sometimes my heart freaks out and I just get diarrheah of the mouth and just talk and talk and talk... very fast, and sometimes makes no sense, even to me. I know how much that can frustrate.
You are lucky to have an understanding husband. I too am lucky in this way. My husband is actually the spearhead of finding things that help me... I try to ignore things, and push off any idea of "help", while he is always reading, studying, and researching new ideas like nutrition, medications, alternative therapies, etc. I hate that I need that sort of attention, and fight it tooth and nail at times.
You have a kindergartener? I miss those days! My daughters are 19 and almost 18... They are awesome. I love your term, "hotshot" for her--that is so appropriate for kids that age. Enjoy each minute--for it will seem like just a few months goes by and she'll be preparing for college. (My older one is finishing her second year at the University--Engineering major, and my younger one leaves in August for the University--Psych major with intentions on Law School.) It leaves just me and my husband. It will be a whole new world, as we married when my kids were 8 and 10... it will be our first time "alone".
What do you do to help you keep track of things? I try to write notes, but then I misplace the notes.. I bought a handheld computer/phone combo that uplinks with my Outlook in my kitchen computer--it has all of my contacts, calendar, lists (grocery, etc), etc... So they do synchronize and most of the time I can keep track of things that way... I use GPS so I don't get lost when I do drive. (But unlike you, I can't stand driving... I feel like I could get myself lost in a second...) When someone tells me to "remember to do XXX" or "in the morning, can you please XXX" without writing it down, I am toast. I will have every intention on doing what ever XXX is, but I will forget. I feel like I am a very bad friend sometimes. Birthdays? Ha. I can't remember them. For my daughter's 10th birthday, I got her an 11th birthday card. "D'Oh!"
I think I am going to learn a lot by coming here. First and foremost, I need to learn to accept my husband's care and attention.
I am so grateful for your reply.
thanks so much kristin, anytime i no different than everyone here, including you. yes, it hard for me to accept help too. i was the one who took care of everyone and everythng. the go to person. then, BAM like i said. yes, it hard for you because all of a sudden now you have to be this different person. you not prepared for that. so of course, it hard to accept the help from your dear hubby. im sure he see that and understand.
how's the handheld thingy working foryou? i use a planner system by franklin covey. i have used it for years, at least 12, so i think it in my head no matter what! it really great and i have converted many people to it, and it can sync to outlook and most other computers and smart phones. my dh (dear hubby) is a network and systems engineer (computer geek) so im luky to have the latest and greatest technology around the house. actually, in my business email he has a program running that catches all my mistakes and it voice command. it like spell check on steroids times 10! it know what andhow i want to say thinks. it great because of my aphasia. i have to send lot of time thinking about what i am saying, then i have to type it... :?
so back to your question.... like i say i use the franklin covey planner and it has systems of checks and cross checks. and then i use a big calender that you can get from staples or other office supply it by day runner. this is whats important. i use a system of color coding - ladybug is green (her school colors), anything medial (doc appts, lab, therapy, etc..) is orange, and so on. it's great for me, and i guess it great for other people too because several of my neighbors saw it and wanted me to show them how to do it. i can take a quick glance at the board (as we call it) thats up on the fridge, and know what is what. now because of my significant memory loss, i cross off each day as it paesses becasuse dont always know what day or month it is. but i think thta hs nothing to do with lupus, i have a kindergarener and im just getting old!! :shock: :lol: :lol:
have one of those 'smart' phones too. i use it to help me with my medication. i set alarms on it to help me remember to take my meds, anduse the recorder when i cant write something down. i set the alarm for me tocheck the recorder every 2 hours. the phone has 3 differnt types of alarms settings for me to use.
so with all that said, i wish you well my friend
now i also
i carry my pick book (planner) wth me just aout everywhere, and i
Update on the IR Sauna--
I got it yesterday (2 weeks earlier than expected) and we got it put together in about an hour. (It was really easy!) I had it fired up and was in it within the next 30 minutes. Well, at the beginning, I thought it was "okay"... nice and warm... that felt good... but after about 20 minutes, I started sweating like crazy (something I "don't" do) and kept it up until it hit about 140 degrees--about 25 more minutes. I got out and was soaking wet-- took a shower, and let me tell you--I have never felt more "clean" in my life. I felt GREAT. My joints didn't hurt, my muscles didn't hurt--nothing. My hands were a little swollen, but that went away in the shower.
I did it again this morning, and again, I feel great. If I could, I would do this twice or three times a day!
My doc says that the IR sauna will bring me relief--and he is right. So far, so good. And if it keeps up, was worth every penny.
This particular sauna is FAR-infrared (see above explanation), and I'm not sure if I'd find this sort of relief from a ceramic IR sauna, but who knows?
For now, I'm very hopeful!!
I'm sorry, I don't know how I missed your post--I'd have replied earlier.
It sounds like you have a hubby like mine (my dh is an aero engineer and also has all the latest techie stuff). It was through my hubby that I figured out how to sync everything together.
Oh yeah--the colors on the calendars are TERRIFIC. (My medical stuff is also orange LOL) I have a computer in the kitchen (the actual computer tower is mounted in the hallway, and it's all wired through the back of the wall) with a wireless keyboard and mouse... I store them in the drawer... Anyway, on the screen is the Outlook calendar (full screen) and it has everything on there in the various colors. I can put it on weekly, daily, or monthly (usually it's on either weekly or monthly), and I can see it from across the room. There are alarms for anything (today the alarm went off for the dogs' heartworm medication--every 30 days), and I can share the calendar with my hubby at his work (or invite him to an event that I schedule) via email. (I have one email address for the kitchen, 3 upstairs, and on on my phone.) I also have the calendar synced on the upstairs computer, with alarms and everything, so I can do things here and not get too distracted from the "need to do" list. Anyway, everything sync's with everything else. Even my phone telephone has a USB cable that I sync with Outlook contacts--so all of my phone numbers (and addys) are automatically saved in the cordless phone at home. It makes things very easy.
I do have the internet on all computers (including wifi on the smartphone) and I check things like weather, school calendars, news, etc., on there too. I have messenger programs on each computer that allow my kids to message me wherever I am, too. (And often I will send a message to myself from one computer to another, to remind myself what I need to do... because sometimes I will go upstairs to "check on something" and will forget before I get upstairs what I was supposed to do... That helps a LOT.
On my smartphone/handheld computer (It uses Windows Mobile 5), I use the Outlook things and also have IGuidance software to link to the GPS. The IGuidance allows you to select addresses from your Outlook contact list as destinations, and will direct you there. If I drive my suburban, I have OnStar, so they will also do the same if you press the button.
It sounds like you and I have similar ways of dealing--and I feel like I have a whole new lease on life. I was overwhelmed at first when I started to set it all up, but it wasn't that bad, and now that it's in place--well, I couldn't live without it.
(And I don't lose the notes like I used to...)
Have a GREAT day,
Where do you get the UVA-1 long wave therapy? is there some sort of salon that provides this? or do you have to buy something? thanks
I don't know about the UVA-1 therapy--maybe you can ask your doctor?
Update on the FAR Infrared: For the first time in years I am able to close my right fist completely and without pain. My skin looks terrific, and my pain is MOST definitely lowered all over.
I use the sauna for one hour a day, followed by a shower and lots of water (but no more than I usually drink--I'm a heavy water drinker).
I just found an interesting site with a report on UVA-1 therapy:
It's a really great site.
Great to hear Kristin. That is weird about the sweating - I don't sweat either and I do think its bad because the body isn't releasing toxins. I am going to make an appt. to try the sauna at the health clinic.
Keep us posted on how things progress...good for you...all the best