10-16-2007, 10:56 AM
Lovely to read you. How are you doing today? Sounds like you were doing 50/50. Is that a good thing or bad? I was just being silly when I said about typing to myself.
Mean? Medicine? Me? Oh, heavens yes. :bad-words: I feel quick to anger inside, but if I do let it escape usually it is a snip. Ultracet only or combined with the lack of a restful night of sleep. The two mixed is a g-r-r-rr-r moment waiting to happen. When I feel like an irritation mode is festering I go do something tedious. Usually bang on the PC or draw, paint, retouch photos, call my father, nephew, sis, brothers. It helps me to prevent an argument, or if in a snippy mood it keeps it from elevating into an argument, because I know in either case it isn't warranted. I'd say 95% of the time I am successful. If all attempts fail, I say I am not feeling well, I need to lay down and watch some mindless program or the Discovery Channel.
When not on pain killers do you think also maybe the nasty comes from Lupus, children, career, resentment or feeling like your needs, support are not being met from the spouse? That perhaps you want to say more, but like us all we don't want to say the forbidden things. Things a wife doesn't say to/about their husband. Feeling caged, wanting to run, feeling smothered, not being fulfilled as a individual? I do. Or wanting him to know exactly how you feel?
I hear you on sole support being our spouses. Me, we had marital woes before all this came to head, so for me IT is secondary. I wonder... is a wonderful husband a man who caters to his wife's every need without question? Should he put himself on the back burner? Or a man who knows when to step in and step out, and encourages his wife to be independent? To me, no, no, yes.
When I am not in maddening pain, my mind does alright. So maybe an anti-depressant isn't needed. My pain has been, well, barely anything recently except chest stabbing pain. What pauses in my thoughts now, has really nothing to do with Lupus but being 46, no eggs. I wanted children. I am getting that nesting feeling again, but this time of me not through an artificial process. Though I wouldn't mind that process, just not of late. Of me, is impossible. It has been a lapse of three months.
Are you on the brand or generic anti-malarial. Plaquenil. I was reading that people seems to have a better response with the brand name. And I was thinking is that why mine seem to had worked so fast. Especially on my joints. Remember I had commented on it months back. Amazed how it worked so quickly. Also on my diaper rash.
Do you get heat waves? Night sweats? Not like hot flashes when a woman is going through the pause stage. Menopause is just the upper face and neck that has a private summer. My entire body, I can feel all my pores opening up. On my shins, my forearms, face, legs..everywhere. And a dew covers me from head to toe. And when touched by air I get cold. Wondering is it a prescription or a combo of them...
And you know what else, my freakin' feet have been turning blue. Egads.
How was your appointment with your GR and R? Did they address your chest pains? Seems chest pains are running rampant amongst us. I have the same thing. I had three areas. Protonix took one part, a huge relief. But I have this gnawing pain left side and it goes toward my back side. I have a request for an x-ray but haven't stopped at the hospital to have it done. I had planned to go this afternoon, but the lack of sleep kept me here at home. Only two hours last night and they were both before midnight. Yes I have been buzzing about since about 11:45PM yesterday. Who or what put zip in my step. Dunno.
I misplaced my order for an X-ray. Located it, now today I am so exhausted, not from IT but haven't slept yesterday before midnight. I slept about 2 1/2 hours. Egads. Perhaps tomorrow I'll run to the hospital and get in line.
Have you obtained any books on IT? Do you do Halloween, candy for the treaters? Carve pumpkins? B is in Cleveland again. Fives day a week.
10-16-2007, 11:30 AM
It is good to read you again. I was actually just checking to see if you were here, when there you are with an actual post! So happy to see it!
I think the anger thing is all of the above, spouse, children, IT, medications, frustration at work, not sleeping, etc.
I don't know what the perfect husband would be. I think I go for the last one in your list as well. I like my independence, need my alone time. My husband is mostly immediately responsive to my every need, but I don't want that most of the time. Do you know what I mean? I know that is confusing, but seriously...when I said could you stop on the way home and pick something up, I didn't mean come home right now because I need it. I know it is confusing for him, he just wants to help, but AAHHHHH!!!
The GP told me absolutely nothing. Really wasn't helpful at all. The Rheumatologist gave me lots of options including an acupuncturist's card and a medical neuromuscular massage therapist's number. I had never even heard of such a thing. She thinks much of my pain/sleeplessness, etc is FMS, not IT right now. For some reason this makes me feel more in control. So odd. I guess I've just lived with the FMS for so long that I think I can handle it better. It is so hard, though. Because I had FMS first, everything that doesn't show up on a blood test that is a symptom is automatically FMS instead of Lupus. I don't care as long as it gets better.
I have to run...
10-16-2007, 01:21 PM
I hear you the husband thingy. Either too much or too little. I felt your AHHHHHHH. I feel that way too at times.
Mine evolved because I said he did very little, now it is I am coming, here I am. Let me carry you upstairs. Telly ringing every hour while in Cleveland..I just say thank you for calling, hey.. call me after you have enjoyed your dinner and are settled in for the night at the hotel and let him carry me upstairs. Indeed, feast or famine. I am hoping B will find his middle.
In a sense he is finding his way through Lupus too. Living it too. I can see it has been stressful on B and still is. Trying to be that thoughtful person. Trying not to expect too much of me. I think he is afraid I will leave so at times he does an overkill.
I also make sure I ask how he is doing, despite him being very closed about his feelings. Sometimes he shares. I've seem him let out a fury..not words..just a huge...growl....teeth clenched, eyes big and go into his office over something small..so I know he is under a tremendous amount of stress too and it wasn't because of the something small. Too much, too little...he is trying to find his middle. It is something he is new at. I understand his struggle...and I have to be patient with him..just as much as he has to be patient with me.
He can't make me well but together we can make the time more enjoyable, with patience, understanding and being understood. Rotten days will come, bad days too. I hope we can find our way not just through IT but also our martial woes.
Finding a balance even if today I am 20% or tomorrow 75%....sometimes it maybe 50/50...50% from each of us...B and Me.
10-17-2007, 04:48 AM
I'm sure we will find it through our marital woes. I had my wrapper appointment yesterday and it really does seem to be helping. We are more responsive. We spent a long time talking about his needs emotionally and I think I have a clearer understanding. He has a very stressful couple of weeks starting today so I'm just going to be supportive!
I meant to mention yesterday that I do get the hot thing. I know I'm not having hot flashes, I'm just too young, but I feel hot all over. From my head to my toes. It seems to happen suddenly. I will be sitting and all of a sudden I feel like I need to step into a deep freeze. The thing is if I put something cool on my skin it feels like it is freezing, but I can still feel myself emanating heat. So bizarre.
I'm alone (more or less) at work today, so I"m hoping to get loads done. I have a presentation on Tuesday that I need to get some serious work done on...
Have a great morning!
10-17-2007, 06:56 AM
Yea, aren't those private spurts of summer (sweating) weird. No, it isn't menopause or peri-. Least I don't think it is either. That only involves the upper trunk, chest and head. I've had those. I think it is the Plaquenil. Since I have been paying attention to it...I dew up everywhere. Especially when frazzled too.
I had a list of many things I would like to do today, and I cut the list down by half so, by the end of the day I am not ragged and can enjoy another day, tomorrow. Try that today on that serious work load you have if you can.
My half list, get my X-ray, purchased paint for two more rooms and take the dog to the park, my exercise too for the day...and that's about it.
I feel when I give of myself, be it understanding, support, compliments, encouragment the reward is twice. Their responsiveness, feeling better about themselves, being understood, feeling loved can create even a greater day for us. A round of happy for everyone...cheers.
Enjoy your day, and what a lovely day it is out there...I just started mine, off to the hospital.
10-18-2007, 05:11 AM
10-18-2007, 06:41 AM
Morning Ashley B,
Isn't it amazing to see your body on your PC. When I had my disk for my spine, head to toe, I was like that is me...different than seeing an X-ray hanging on a wall infront of a white lighted screen.
I hope the CT-Scan read divulge the secret. Wasn't there a dictated document in the packet from the Diagnostic Radiologist...
I did get my X-ray..result unknown when. I forgot to ask. Probably the usual, wait for the call if it is anything. Otherwise if no word by Tuesday I give my PCP a jingle juist to confirm it is indeed nothing was noted on the X-ray and what will be our next avenue in solving this mystery pain.
At this moment the pain is small potatoes...Oh, I have to remember to mention to him my blue feet. I am feeling realy really nice.
Slept well. Started this morning at 6AM with some low impact aerobics. More like dancing...and when they did the lunges I did movements from what I remember when I was so fit. Seems eons. Felt freeing..the body coming to life. I do enjoy yoga and pilates but moving without structure, to a beat is so much different. Hey , shake that body..woohoo. Dancing should be on the doctors orders for Lupus..any kind, Jazz, Ballet, Waltz, Two Step, Ballroom, Street.
Took pictures of the morning dew on my flowers, putzing about, tidying up...preping the walls for paint and after I post this I am going to hang some wood blinds that finally arrived. Custom takes forever...and I like them, can't wait to see what they will look like, three in a row.
Then later..gee so many items. I will choose wisely though...
As you can read..I am doing grand. I hope soon you can feel this way too. I pray, even for me, it will last..but I will enjoy it as it is given. In moderates amounts, reserving in hopes tomorrow just might be another great day.
Wishing all good things at your reading meet.
10-18-2007, 08:49 AM
Hi! I'm so happy to read that you are feeling grand. I am sleepy, but otherwise I think I'm actually doing okay. I haven't had to take a pain killer in a number of days now so I really do think I'm doing better.
I'm very frustrated at work...being harassed and not knowing quite how to handle that. I seem a bit schizophrenic lately. I'm on the board in the morning complaining, then on at mid day in misery, then back before I leave work feeling better again. I'm all over the chart physically. I'm at work though and that is always a sign that I'm doing a bit better.
It is so funny lately I've been talking in such extremes. My husband pointed out that I've been saying "...in the history of time" a lot and since he pointed it out, I've said it about a million more times. (extreme again!) So this is the best conversation in the history of time, this is the slowest computer in the history of time, etc. I've begun to stop mid-history of time and changing my sentence end. This is the best cup of coffee in the entire state of north carolina, but of course it comes out, "in the hi-entire"
We've been laughing a lot lately. He is very stressed at work, but he is confiding in me about it again, which means the wrapper is working! Actually, I think he might be there now...hmmm should have paid more attention.
The rheumatologist suggested I try acupuncture so I have an appointment next week. We'll see how that goes!
I did go to the Urologist today and he says I'm all clear. Who knows what that actually means except that there doesn't seem to be any clear cause for my bizarre symptoms, however, it also means that kidney and bladder function are completely normal, which as I'm sure you know is a huge relief.
Okay, back to work...
Oh, wait, I lied. I wanted to ask about your blinds. I desperately need some custom blinds for my kitchen. I'm surprised to hear you say yours "arrived" today. Does that mean that they arrived at a store and someone is coming to install them, or does taht mean that you ordered them somewhere online by doing the measurements yourself? Do tell!
10-18-2007, 10:05 AM
Gosh those screws are hard to screw in. Taking another break.
Okay, I'm telling. Blinds. I guess the word custom is inappropriate. Made to order is what they say. Penneys 2" Basswood. I would rather not have to have them made to order, but our windows are such an odd size, so it seems. 34" x 70" . If already made, the sizes usually are 33, 35, 36..and no 34..why I wonder. And if you do come across a 34..only 64" in length. Egads.
I find it is more economical to do it myself then hire out. I just can not phantom spending over 10K for window dressings. This way when I change out I won't feel so guilty for wasting. Being married I now think about those things.
And if you need a coupon code I can find one. I am very thrifty at shopping on the Internet since being ill. Rarely do I pay for shipping. I work the numbers. Gives me something to do.
I was even thinking about ordering the JCP bamboo roman shades. Light, airy and not like a wall.
Acupuncture...I liked it. It worked well for my lumbar. She brought it to a tolerable pain level. Which is now superseded by Lupus and SS and it's cronies. So, the sciatic, the electric shocks are barely noticed. I have my days..but to me it is secondary to all this other crapolla. Check out the place before you go..so it will be a good experience for you. I also had cupping done and she also light the needles, with flame in some fashion.
Have you tried stopping your urine in mid stream regularly for exercise for your symptoms...?
My phrase lately has been...Ah, but then I really don't know anything or such is my life. Words of being nonchalant I guess. Oh and the word weird. With it drawn out on the Wee..e..e with lips puckered like Donald Trump's when he says huge.... That is what I feel I look like...without the comb over and the narcissism.
B hasn't been to his shrinker in a spell since traveling 5 days a week. He will be home for have the week during the week of Halloween. He like when we get dressed up for the treaters. I think this year I will paint a skelton look on our faces and drape ourselves in white shites. Something simple. I hope I have will power and don't go one candy for you, the treater and two for me. Maybe I need to buy some sour powdered worms and rolled fruit...yucka..but kids love it.
I've been on this PC so much lately. Probably because I am alone 5 days a week. Keeps me from nibbling. Waiting for more printer ink and photo paper in the mail, so I can print out more snaps. I go through it so fast. I make cards also. I would send you an invite to my online albums but it has to be through an email...if you want to see..send me a PM with it. Or I can send them as a download with your favorite colors of flowers.
I email this one woman in Denmark, who I met in this forum a few months ago. She is a delight and we share pictures often. She does the outdoor snapping like me...close ups, nature and etc. Denmark is beautiful. Reminds of the Midwest, the prairie states all rolled into one.
Breaks up..12 more to go.
10-18-2007, 10:21 AM
Your thriftiness is exactly why I was asking. Trust me, I do not want to have to have custom blinds, but we have the same problem in our kitchen. Two windows that are 32 inches wide!!! What the heck. We've had serious trouble finding blinds for them, so this is a great tip.
I have tried the mid stream pee thing and all my controls are working just fine. It is the feeling that I'm going to be incontinent, not that I have ever actually been incontinent! Isn't that weird?
Speaking of weird, I love your Donald Trump description. It was a perfect visual!
I'm pm'ing you my email address...My favorites are red and yellows and oranges and blues. I love them all, but the deep blues that look like purple and the daisy yellows make me the most happy